LOOKING AT LYME DISEASE

UNDULATORY IMMUNE RESPONSE IN EUROPEAN LYME BORRELIOSIS

2012-02-04T02:59:00.000-08:00

Course of Antibody Response in Lyme Borreliosis Patients before and after Therapy

Elisabeth Aberer¹ and Gerold Schwantzer²

¹Department of Dermatology and Venereology, Medical University of Graz, Auenbruggerplatz 8, 8036 Graz, Austria
²Institute for Medical Informatics, Statistics and Documentation, Graz, Medical University of Graz, 8036 Graz, Austria

Received 27 September 2011; Accepted 27 October 2011

Academic Editors: A. Clayton and S. Devi

The early immune response (IR) in European Lyme borreliosis patients has not yet been studied in detail. The aim of the study was to analyse retrospectively the antibody development in 61 erythema migrans (EMs) patients depending on the duration of infection from tick bite by using a whole-cell lysate B. gariniiimmunoblot. The evolution of antibodies proved to be undulatory in untreated patients with two peaks for IgM at weeks 5 and 9 and for IgG at weeks 4 and 8. The analysis of IR courses after therapy identified patients constantly seropositive or seronegative and patients with repeated seroconversions with a switch, disappearance, or reappearance of anti-23 kD or anti-39 kD antibodies during the one-year period. We suggest that the antibody production in EM patients may be missed due to an undulatory IR. This phenomenon might be an as yet insufficiently researched aspect in Lyme borreliosis.

Go to this link for access to the full paper here

extract from study

Although the undulatory character of the IR before therapy in our patients could not be determined in every single patient, the findings after treatment might reflect a similar situation also in untreated patients before therapy. So, we suggest that a single serological finding is a snap shot and gives evidence of an infection. On the other hand, the true infection might be missed by negative IR, as might be the case in the ~40% seronegative EM patients.

Serological findings do not distinguish between active and previous disease. Borrelia DNA can persist in urine for even 1 year after treatment [11], and antibodies to Bb may persist for up to 20 years after appropriate therapy [12]. Bearing in mind the characteristics of cyclic patterns in other bacterial infections, the undulatory IR noted in our study may be an as yet insufficiently researched aspect in Lyme borreliosis.

COUNTESS OF MAR QUESTIONS IN THE HOUSE OF LORDS - LYME DISEASE

2012-02-02T09:50:00.000-08:00

The Countess of Mar who has for some time represented and supported the ME/CFS patients has recently taken an interest in helping patients with Lyme Disease.

Questions in the House of Lords.
Q. To ask Her Majesty's Government whether the Lyme Unit at the Health Protection Agency has always been fully compliant with all aspects of the Data Protection Act 1998, particularly with respect to retention of patient information, using patient information for purposes for which it was not originally intended and passing patient information to third parties without consent from the patient.[HL13893]

A. The Parliamentary Under-Secretary of State, Department of Health (Earl Howe): I am informed that the Health Protection Agency and its Lyme Borreliosis Reference Laboratory complies with all aspects of the Data Protection Act 1998.

Asked by The Countess of Mar

To ask Her Majesty's Government whether, in view of the statement on the Medicines and Healthcare products Regulatory Agency website that their decisions

7 Dec 2011 : Column WA173

will be "based on robust science" and "fact-based judgments to ensure that the benefits to patients and the public justify the risks" of new scientific research, they have conducted a recent risk assessment of the ELISA test for Lyme disease.[HL13895]

A.Earl Howe: We are advised by the Medicines and Healthcare products Regulatory Agency (MHRA) that manufacturers of in vitro diagnostic devices such as the enzyme-linked immunosorbent assay test should ensure they conform to the safety, quality and performance requirements of the European Commission In Vitro Diagnostic Devices Directive before they CE mark their products and place them on the European Union and United Kingdom market. This involves setting out their performance characteristics for the test and being able to demonstrate that it performs to the accuracy level claimed for it. The MHRA has a mainly post-market surveillance and enforcement role under the directive and would investigate any problems with the use of such a test that comes to its attention. Depending upon the results of any such investigation, the MHRA has a range of legal powers open to it that include removing the device from the UK market.

Q. To ask Her Majesty's Government why the Lyme Unit of the Health Protection Agency does not publish full details of its in-house immunoblots including the name, origin and specificity data of the antigens used and the criteria used to determine whether a result is positive, together with all the evidence from the peer-reviewed literature validating those criteria.

A. Earl Howe (Parliamentary Under Secretary of State (Quality), Health; Conservative)

The Lyme Unit of the Health Protection Agency (HPA) does not use in-house produced immunoblots in the investigation of Lyme and has not done so since 2005. The HPA's Lyme borreliosis unit currently uses commercially produced and CE-marked Trinity Biotech EU Lyme western blots as supplementary (second stage) tests in the investigation of suspected Lyme borreliosis.

House of Lords: Health: Lyme Disease (25 January 2012)

Q. The Countess of Mar: To ask Her Majesty's Government whether the Lyme Unit of the Health Protection Agency regard the 41 internal antigen on the Mikrogen immunoblot as highly specific or non-specific for the detection of Lyme disease.

A. Earl Howe (Parliamentary Under Secretary of State (Quality), Health; Conservative)

The Lyme Unit of the health protection agency (HPA) does not use Mikrogen immunoblots. The HPA currently uses commercially produced and CE-marked Trinity Biotech European Union Lyme western blots as supplementary (second stage) tests in the investigation of suspected Lyme borreliosis..

House of Lords: Health: Lyme Disease (25 January 2012)

Q. The Countess of Mar: To ask Her Majesty's Government whether Lyme disease is still being studied at Porton Down for its potential as a biological weapon.

A. Lord Astor of Hever (Parliamentary Under Secretary of State, Defence; Conservative)

Dstl (or its predecessor organisations) has not looked at the potential for Lyme disease to be used as a biological weapon and has never had a programme of research to evaluate either the causative bacteria or its potential as a weapon.

Details can be found in 'They work for you' here

LYME DISEASE INCREASING IN THE UK - UNDER THE RADAR

2012-01-25T01:58:00.000-08:00

Estimating Lyme disease risk using pet dogs as sentinels.

Comp Immunol Microbiol Infect Dis. 2012 Jan 16. [Epub ahead of print]

Estimating Lyme disease risk using pet dogs as sentinels.

Smith FD, Ballantyne R, Morgan ER, Wall R.

Source

School of Biological Sciences, University of Bristol, UK.

Abstract

The reported number of cases of Lyme disease, Borrelia burgdorferi sensu lato, is thought to have increased in the UK over the past decade, but consistent surveillance data are lacking. Here the prevalence of B. burgdorferi in ticks attached to pet dogs was examined - using them as sentinels for human disease risk. Dogs give a good indication of the exposure of their human owners to infected ticks, since they largely share the same environment and visit the same outdoor areas. PCR was used to test 739 tick samples collected from 3534 dogs selected at random as they visited veterinary practices over a period of six months. Overall, the prevalence of infected ticks on all dogs was 0.5% giving an estimated 481 infected ticks per 100,000 dogs. The data suggest that the prevalence of Borrelia in the UK tick population is considerably higher than most recent estimates indicate.

PMID:: 22257866; [PubMed - as supplied by publisher]

Full article can be accessed here

Excellent to see this published and lets hope it opens the door to much

needed research here in the UK on not just Lyme Disease but other tick borne

diseases.

Faith Smith presented the earlier stages of her research at Lyme Disease Action conference in 2010

Lyme Disease Action discussing this research with a link to an earlier video interview

with Faith here

BBC discusses the research here

'A spokeswoman from the Health Protection Agency said it was important that people realise the risks and remain "tick aware".

"They are out there in woodland areas." She said it was best to keep to footpaths and avoid long grass where possible when out walking and to cover up the skin.

Also, brush off clothes and pet's coats before returning indoors to remove any unattached ticks that might later seek a feed.'

So how come Doctors are still saying to patients no that can't be Lyme Disease we don't have Lyme Disease here in the UK?

COMMENT ON THE PERSISTENCE OF BORRELIA BURGDORFERI IN RHESUS MACAQUES FOLLOWING ANTIBIOTC TREATMENT OF DISSEMINATED INFECTION

2012-01-22T02:29:00.000-08:00

Well found, Joanne.

I thought I would comment on this report.

Firstly I noticed that the introduction says:

"The clinical progression of Lyme borreliosis may be divided into early-localized, early disseminated, and late stages. During the early-localized phase, the disease's most prevalent sign is an erythematous skin rash known as erythema migrans. Subsequently, patients may develop early-disseminated disease with dermatologic, rheumatologic, cardiac, and neurologic involvement."

Progression may indeed be divided into stages as stated, but there is no scientific basis for so doing. This is only a result of an initial belief that Lyme disease was similar to syphilis as the bacterium had the same shape. This division initially was merely made as an analogy. Involvements may indeed develop, but there is no scientific basis for this development only occurring `subsequently'. This assumption has led to many of the problems in treatment as MDs do not know whether to treat for possible `subsequent' disease at once, or to wait until the patient manages to self-diagnose `subsequently', i.e. later.

In the report 'Introduction' Lyme disease is first described as a time-based or phase-based disease while it is then described as a disease based on the following categories:

a. Local or spreading, i.e. range of disease in body.
b. Skin or heart involvement, i.e. organ involvement.
c. Rheumatologic, `any disorder of the extremities or back, characterized by pain and stiffness', involvement, i.e. involvement of disorders so general that a cause could not be given. `rheum' in Greek means `stream, current'.
d. Neurologic involvement, i.e. a system involvement.

There is no mention of an infection in the brain or the casing covering the brain although this is common. It might be that this is included and implied in `neurologic involvement', but this is not what `neurologic' usually means in medicine. It is a somewhat vague term anyway.

The Introduction continues:

"The Infectious Diseases Society of America (IDSA) has issued
guidelines for Lyme borreliosis therapy [2]."

In `Background' in the IDSA it states:

"Clinical manifestations most often involve the skin, joints, nervous system, and heart. Extracutaneous manifestations are less commonly seen than in earlier years."

Here there is not only a time-basis for Lyme disease, but further types of division. `joints' are included which may perhaps be the same reference as that to `rheumatologic involvement'. Once again, there is no mention of the brain or the casing covering the brain.
IDSA then briskly moves on to describe other infectious agents transmitted by ticks.

The Rhesus Macaques study in the 'Introduction' sets out the following hypotheses:

"Signs and symptoms of putative failure of antibiotic treatment in late disease or ineffectiveness of repeated treatment in patients with PTLDS may be formally attributed to several causes, including: 1) spirochetes that persist in the tissues, likely in small numbers, inaccessible or impervious to antibiotic; 2) inflammatory responses to residual antigens from dead organisms; or 3) autoimmune responses, possibly elicited by antigenic mimicry [10]."

Putative means `supposed' and is therefore superfluous as the statements already are said to be hypotheses. Putative is perhaps written to weaken the hypothesis before it is even tested.

PTLDS stands for `post-treatment Lyme disease syndrome'. A syndrome is a condition without known cause, etiology. Hopefully, by the end of the report it will be called `too-short treatment Lyme disease progression'.

This Rhesus Macaques study first deals with `experiment 1'.

Rather oddly this experiment is about what is called `Antibiotic treatment in the late, disseminated phase of infection'. I say `oddly' as I expected the first experiment to be about the early stage of Lyme as Embers et al. introduced the disease in that order. The rationale for this order may be that the Klempner et al. study dealt directly with Lyme disease in patients where three or more treatment regimes already had failed.

24 rhesus macaques were infected with borrelia burgdorferi. 12 were treated with antibiotics, 12 were not treated. 4 animals were used as uninfected controls. 2 of these were treated with antibiotics, 2 were untreated.

This design is similar to that used in medical studies on humans.
The 24 infected animals were left for 27 weeks and checked for infection which was positive.

12 of the infected animals were treated with intra-venous, IV, ceftriaxone from week 27 to week 31, i.e. for four weeks, in fact for 30 days. From week 31 to week 39 the animals were then treated with doxycycline, for 60 days.

It is hard to see why the animals were treated for 90 days. The IDSA guidelines are 14 days of doxycyline for Lyme in the presence of an EM, and 28 days of doxycycline for neurological Lyme `without clinical evidence of neurological disease'. I have no idea how you would obtain treatment without providing clinical evidence of neurological disease. The IDSA guidelines deal with the matter of persistence after their treatment guidelines either as a co-infection or as a `rare patient'.

This Rhesus Macaques experiment 1 therefore is a study of long-term treatment and not a study of any treatment currently recommended by the IDSA. The IDSA guidelines are polemical and tendentious. It is worth repeating them as they have caused so much suffering and ill-health throughout the world:

"The etiology of residual patient complaints after treatment may include an inflammatory response unrelated to active infection or may be due to alternative disease processes. The possibility that these symptoms may have been related to a tick transmitted coinfection was not evaluated in any of the studies. Importantly, failure rates were not considered in the context of the high frequency of background complaints present in an otherwise "healthy" population. Both of these factors have likely contributed to a misconception by some that recommended treatment courses are associated with a relatively poor outcome. This has helped to foster highly speculative theories on how B.burgdorferi might survive in patients treated with a standard course of antimicrobial therapy. These issues are discussed in greater detail below in the section on post–Lyme disease syndromes."

"Background and diagnosis of patients with post–Lyme disease syndromes. Shortly after treatment with conventional courses of antibiotics for Lyme disease (tables 2 and 3), a minority of patients continue to report symptoms or signs. On the basis of numerous studies of patients with erythema migrans, it can be expected that few—if any—patients who are compliant with antibiotic therapy will have persistence or recurrence of the skin lesion. A rare patient, however, will develop an objective extracutaneous manifestation of Lyme disease, such as a new seventh nerve palsy or meningitis [138, 142]. Seventh nerve palsy typically occurs during the first week of therapy and, in most cases, appears to be benign; in an otherwise stable patient, this event does not mandate a change in treatment
[138]. In contrast, if Lyme meningitis develops during or shortly after completion of a course of oral antimicrobial therapy, the patient should be re-treated with ceftriaxone or a comparable
parenteral antibiotic (table 2) [142, 256]. In some patients treated for objective extracutaneous manifestations of Lyme disease, there will be slow or even incomplete resolution of that manifestation. This is well illustrated by the treatment of patients with neuroborreliosis who have seventh nerve palsy. A small proportion of such patients will have mild residual weakness of facial muscles [155]. A similar phenomenon can probably occur with any other site of neurologic impairment, attributable not to persistent infection but
to residual, irreversible neurologic damage. In ∼10% of patients with Lyme arthritis, joint swelling (usually of a single joint) will persist after recommended antimicrobial treatment courses (table 3) [153, 205]. Chronic joint swelling in these circumstances, if not treated with other approaches (such as synovectomy) [235], will eventually disappear, but it has lasted for up to 4–5 years in a few patients [236]. B. burgdorferi has not been demonstrated to persist in such patients. Objective clinical manifestations are uncommon after treatment of patients with Lyme disease. A much more likely scenario after treatment is the persistence or development of subjective symptoms without any residual or new objective manifestation. In patients treated for early or late Lyme disease,
the frequency of subjective symptoms is at least partially dependent
on when after treatment the patient is assessed [142,227]. On the basis of an intention-to-treat analysis of 1 study of patients treated for erythema migrans, subjective symptoms were present in 35% of patients at day 20, in 24% at 3 months, and in 17% at 12 months (P ! .002, for the comparison of the frequency of symptoms across the 3 time points) [142]. The presence of such symptoms during the first several weeks to months after treatment most often appears to be due to slow resolution of an inflammatory process associated with a highly
symptomatic or disseminated B. burgdorferi infection [257]. Furthermore, evidence from 3 randomized trials [137, 142, 227] and 1 retrospective study [144] of patients treated for either early or late Lyme disease indicates that a more prolonged initial treatment course of antibiotics does not improve the rate of resolution of symptoms (see the sections on early and late Lyme disease above for more details)."

The answer to the choice of treatment regimes in this Rhesus Macaques experiment 1 study lies in the Klempner et al. study of 2001. It was the intention of the Klempner study that "not-cured" Lyme patients be given 30 days IV cefriaxone followed by 60 days of doxycycline followed by a further 90 days of doxycyline. However, after 30 days IV ceftriaxone and 60 days of doxycyline patients appeared on median values to be no better. At that time: "However, two patients in whom a study-related serious adverse event occurred were both in the antibiotic group. During intravenous treatment, one had a life-threatening pulmonary embolism and the other had fever, anemia, and gastrointestinal bleeding." "After a planned interim analysis, the data and safety monitoring board recommended that the studies be discontinued because data … indicated that was highly unlikely that a significant difference in treatment efficacy between the groups would be observed …"

30 days of IV ceftriaxone and 60 days of doxycyline in the Rhesus Macaques study was therefore chosen to enable a comparison with the Klempner et al. study. Would there still be borrelia burgdorferi bacteria or would they all be eliminated if you killed the animals and subjected them to autopsy tests?

The ceftriaxone treatment was 25 mg/kg. Adult males weigh about 7.7 kg so this is a dose per day of 154 mg. This is a similar dose per kg to that given to humans, but the great difference in weight is a potential source of error. MIC and MBA were not measured, but by comparison with other studies it was considered that:

"Therefore, it is likely that the concentration of ceftriaxone in the rhesus circulation remained above the MIC and the MBC for a significant portion, if not all of the 24-h interval between consecutive doses of this antibiotic."

The doxycyline given was 2 mg/kg, twice a day. This was thus 30.8 mg per day for a 7.7 kg animal. MIC and MBA were noted.

The animals were killed starting at week 63. This was stated as: "Animals were kept for a minimum of 6 months after treatment termination." The reason for this is not given. It may be to allow time for any remaining bacteria to multiply, but this is speculation. In the Klempner study screening was carried out after 90 days and after 180 days, the latter perhaps because this was the period of antibiotic treatment planned before the experiment was discontinued. There was thus a period of waiting in Klempner after the end of treatment, but this was not 6 months.

Tests were carried out with five methods:

C6 ELISA; Inflammation by taking tissue samples; immunofluorescence assay; RNA; and DNA samples.

0/12 of the C6 ELISA tests were positive in no animal, 3/12 of the inflammation tests were positive in heart tissue in 3 animals, 7/12 of the IFA tests were positive in the heart and meninges, 4/12 of the RNA tests were positive in the heart and brain, and 1/12 of the tests was positive in the meninges, bladder, spleen and lung.

This demonstrates that even after 90 days of treatment borrelia bacteria remained in the heart, meninges, brain, bladder, spleen and lung, or at any rate multiplied and invaded those organs. All the organs found are in the main blood circulation path while peripheral organs might be expected to be invaded at a later time.

This also demonstrates the value of taking as many different types of test as you can, whether they be approved of or not.

The inadequacy of the advanced C6 ELISA test in Lyme disease which has been present for a while is demonstrated.

This experiment is unrealistic in that an animal cannot tell anyone that it is tired or that it has a headache or that it hurts when it urinates. On the other hand, infection in organs in Rhesus Macaques can be objectively observed as in the experiment by killing the animals while this is not ethical in humans.

Conversely if a human tells a doctor they are tired the doctor merely treats that as a subjective indication. The doctor writes; "Pat says she is tired". The patient cannot say, "Look, I think I have Lyme disease. I was bitten by a tick sixty-three weeks ago and a large, expanding, red ring appeared. I did not think much of it at the time. Can you kill me and do some tests on me, mostly on my brain and the brain cover? When you're finished please resurrect me and we will look at the results?"

The Rhesus Macaques study clearly demonstrates that bacteria are present after 90 days of antibiotics. You either believe germ theory or you don't. I believe germ theory and I therefore believe that prolonged treatment of Lyme disease is indicated by this research.
When I get the time I will look at experiment 2 as well. This deals with treatment in the early, disseminated phase of infection, as they choose to call it.

A major failing in the study regarding experiment 1 is that the hypotheses set out are not declared to be true or false.

'Explanations' are discussed, though solely in terms of the C6 ELISA test. It is as though the failure of this test must be definitive, i.e. that the C6 ELISA test is the disease. Page 8: "We therefore favor explanation #3 and seek to determine the level of transcriptional/metabolic activity, and pathogenicity of persistent organisms. If, for example, spirochetes that are recovered by xenodiagnosis from treated animals turned out to be non-pathogenic, this would validate the decline in C6 titer as a measure of successful treatment outcome." I assume #3 refers to 3) at the top of page 2.

A semantic comment on this study is that the title includes the concept: "Persistence". I hope this does not presage new IDSA guidelines such as: "Persistence of symptoms without objective signs of disease is often presented by patients. This is called Persistent Lyme Disease Syndrome, PLDS."

Peter Travis ( permission given to re post )

The above was too long to post on the comments of my original posting about this study.

IDSA DEPEND ON OUTDATED LYME DISEASE GUIDELINES

2012-01-22T01:52:00.000-08:00

LYMEPOLICYWONK: Congressmen Call For Removal of Outdated IDSA Guidelines from National Guideline Clearinghouse

- from Lyme Disease.org

Treatment guidelines are tremendously important in determining your medical treatment options. All important treatment guidelines are listed by the NGC. NGC requires that guidelines be updated every 5 years.

The IDSA has not revised its guidelines for more than 5 years. Nevertheless, the NGC recently permitted them to continue listing the guidelines without updating them because the IDSA guidelines had been reviewed in the antitrust hearing settlement hearing.

This is wrong because:

1. The IDSA antitrust review panel was not empowered to revise the guidelines;

2. The IDSA antitrust review panel only had authority to review the guidelines for compliance with the legal standard set for them in the settlement agreement.

3. The IDSA antitrust review process recommended over 25 changes to the guidelines—none of which have been implemented. You might recall that there was a split vote on the settlement panel regarding whether lab testing should be mandatory for a diagnosis of Lyme disease.

4. The 2006 guidelines do not reflect new science including the Barthold mouse study and the Embers monkey study, both of which demonstrate persistent infection—a fact denied by the 2006 guidelines.

The IDSA guidelines result in patients being denied necessary care. They are used by insurers to deny patients reimbursement for care and by the IDSA as a club to drive out its competitors in unprofessional conduct actions.

Go to the link here to read in full.

PROOF OF PERSISTENCE - CHRONIC LYME DISEASE

2012-01-13T09:26:00.000-08:00

Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection

Abstract

The persistence of symptoms in Lyme disease patients following antibiotic therapy, and their causes, continue to be a matter of intense controversy. The studies presented here explore antibiotic efficacy using nonhuman primates. Rhesus macaques were infected with B. burgdorferi and a portion received aggressive antibiotic therapy 4–6 months later. Multiple methods were utilized for detection of residual organisms, including the feeding of lab-reared ticks on monkeys (xenodiagnosis), culture, immunofluorescence and PCR. Antibody responses to theB. burgdorferi-specific C6 diagnostic peptide were measured longitudinally and declined in all treated animals. B. burgdorferi antigen, DNA and RNA were detected in the tissues of treated animals. Finally, small numbers of intact spirochetes were recovered by xenodiagnosis from treated monkeys. These results demonstrate that B. burgdorferi can withstand antibiotic treatment, administered post-dissemination, in a primate host. Though B. burgdorferi is not known to possess resistance mechanisms and is susceptible to the standard antibiotics (doxycycline, ceftriaxone) in vitro, it appears to become tolerant post-dissemination in the primate host. This finding raises important questions about the pathogenicity of antibiotic-tolerant persisters and whether or not they can contribute to symptoms post-treatment.

To read the full article in Plus one here

IDSA, HPA and all other Health Authorities can no longer justify ignoring Chronic Lyme and the possibility of persistent infection, particularly when faced with improvements on long term antibiotics.

Thanks to Camp Other for the posting here

UPDATE OF MY LYME DISEASE

2012-01-10T13:22:00.000-08:00

This blog is not really about my Lyme Disease but more about raising awareness looking back I realised that I needed to give a brief update.

My story is in the right hand side column of this blog but was posted here

It was about February 2011 that I again stopped taking antibiotics, so far none of the Arthritis or muscle weakness symptoms have re appeared and although some symptoms continue such as facial tingling and sinus problems (which may or may not be Lyme related) I am doing really well. Apart from a couple of weeks clarithromycin for ear infection September time, I have not needed any medication since February 2011.

How many people so disabled with Arthritis and muscle weakness that they get retired early on Ill health grounds make such an amazing recovery on just oral antibiotics?

Winning the Lottery is nothing compared to regaining my health and life.

Daily I am thankful for all those Lyme Advocates who have helped raise awareness of the controversy of Lyme Disease that leaves our Health Departments in ignorance of the science that supports ILADS view and opposes the restrictive Guidelines produced by the IDSA , leaving so many patients Worldwide without diagnosis and treatment that can help them.

ANGRY

2012-01-09T04:41:00.000-08:00

'ANGRY'

Written in September 2011 by Lyle from London.

I am sure I am repeating what many people feel, but I wanted to say this:

I am angry that the combined forces of the world's medical and pharmaceutical
powers haven't seen fit to carry out concerted research to establish a test that
provides a 100% proof of the existence or non-existence of Borellia bergdorferi
in the human body

I am angry that that same vastly wealthy, knowledgeable and powerful collection
of people has done little effective research into finding a drug or treatment
that definitively removes borellia bergdorferi

I am angry that significant numbers of the world's medical profession do not
even know of the existence of Lyme diease, and would not recognise a bulls-eye
rash as a definitive diagnosis of Lyme disease, let alone consider Lyme disease
as a diagnosis for the multitude of other symptoms it can cause

I am angry that significant numbers of the world's medical profession adhere to
the belief that 2-4 weeks of docycycline will remove borellia bergdorferi from
the human body despite the massive and continually increasing evidence that this
is not true

I am angry that there are doctors in our supposedly enlightened culture who
disdain their patients when they express the concern that they may have Lyme
disease

I am angry that multitudes of doctors believe that the results from simple tests
for the presence of Lyme disease are 100% accurate, despite evidence and
statements to the contrary from the organisations carrying out those tests

I am angry at the ignorance of medical practitioners who believe that Lyme
disease only exists in limited geographic areas, despite extensive evidence that
ticks will attach themselves to any warm blooded creature, including birds who
are self-evidently not limited to specific geographic areas

I am angry that my joints are unbelievably painful if challenged by any but the
most mundane movements despite one month of intra-muscular penicillin and oral
Cefuroxime supported by Allicin, Banderol/Samento in sequence and a mass of
supplements

I am angry that there is not a clear path that can be taken by all suffers from
Lyme disease that will clear their symptoms and allow them the lives they used
to lead - therefore saving society/insurers/government the vast ahnd rapdily
growing amounts of money required to help alleviate their pain, inability to
work, need for support

I am angry that there are people far worse off than me who have struggled for
years to return to some semblance of a quality of life and I can do nothing to
help

I am angry that my healthy and active life has been taken away from me and the
only avenue back is a long, very slow, very expensive and very painful clawing
back using drugs and supplements that both I and my doctors hope will work,
because none of us really knows for sure what the answer is or what the problem
is - we just know that 2-4 weeks of docycycline is not the answer

I am angry that there are thousands of people out there who cannot afford the
same treatment and have to stumble along without the medical help they so sorely
need

I am angry that there are people on this earth, let along doctors governing
medical organisations, who cannot see the tsunami that is growing around us all
and who insist on prosecuting the medical professionals who are trying to help
us get well

To those doctors I say the following:

- The current tests for Lyme disease are known to be inconclusive - why are you
not urging your profession and academe to focus on research to develop effective
testing regimes?

- If Chronic Lyme disease does not exist then please tell me and thousands of
other sufferers, what it is that is causing our symptoms - we are not depressed,
and we are not imagining them.

- In the absence of conclusive tests - why do so many of your profession blame
the patient rather than treating the symptoms?

- Evidence exists that long term antibiotic treatment has been successful in
large numbers of cases. Why do you not pursue that path? Why do you attack it
when the 'accepted' path has not demonstrated success? The 'accepted' treatment
for ulcers was reduction of stomach acid until Barry Marshall and Robin Warren
proved in 2005, by infecting and then treating themselves, that ulcers were
caused by helicobacter pylori. Does this not suggest that we could face a
similar situation with Lyme disease?

- Why are you wasting even a moment of your lives attacking doctors who are
trying to treat us when you could be focussing on helping us, the patients who
suffer every day?

Thank you Lyle from London for giving permission to re post your comment which you posted on Eurolyme.

Your experience was not dissimilar from my own, a history of my illness is in my right hand side bar of this blog.

Your recent post 'Improvement there is hope' starts by saying 'Six months ago I couldn't put my socks on or sit down without pain. When I stood up it was like a 90 year old creaking out of a chair, hobbling along for a while until the joints loosened up again.'

ending :-
'Just wanted to say that the right treatment really does seem to work - if I continue to improve at the very slow but steady pace of the last two months then the future is bright. Yesterday I ran up the stairs - haven't been able to do that for the last 8 months!
Lyle'

How many patients with arthritis and muscle weakness and many other symptoms could in fact be suffering with an undiagnosed case of Lyme Disease and like you and I and many hundreds of others get well on long term antibiotics. It is like winning the lottery but actually even better what price can be put on regaining a healthy, pain free and without disability body.

IDSA ASKS WHAT WE WANT? WILL THEY LISTEN?

2012-01-05T13:35:00.000-08:00

The Infectious Disease Society of America asks on it's Facebook page - 'What would you like to see from your society in the coming year?' see here and leave your comments.

At the time of writing this there are 719 comments from patients suffering with Lyme Disease. Heart felt comments - will they listen?

Can they really afford to keep ignoring the science that is there for all to read.

In the day of the Internet and social networking sites they can no longer deny this disease in it's chronic form and expect us all to accept their restrictive guidelines, especially when so many thousands of us have the lived experience of finding that long term antibiotics improve our health and give us our life back.

The denialists might well hoodwink the media and fool doctors who are too busy to do their own reading around this controversy but they can't/didn't stop this going viral and thanks to IDSA Questions- undeleted comments Facebook, even if they do decide to delete all our comments they have been recorded elsewhere here

Lyme Disease.org posted about it here

MULTIPLE SCLEROSIS INFLAMMATION, INFECTION - FOR HOW MANY LYME DISEASE?

2012-01-01T04:14:00.000-08:00

Anyone with a Multiple Sclerosis diagnosis or anyone with neurological symptoms or a Lyme Disease diagnosis will find this radio interview interesting and enlightening. Starting about 10 in it is the U tube of a radio interview the second of two with Tom Grier. Originally heard on Coast to Coast

Very interesting to hear Tom talk about recent research done by MAYO Clinic confirming that the very early stages of MS show signs of inflammation/Infection in Cortex and Meninges before white matter lesions develop in the brain. This so fits with what is being found in Lyme and especially MS/Lyme.

Tom Grier has lectured on this subject many times and posts of some of his lectures can be found in my right hand side bar of this blog.

The photo is of the book Ending Denial which can be found through Can Lyme and is worth every penny and far more, it is relevant to a World wide audience not just for Canada.

CONCERN OVER INCREASING LYME DISEASE IN UK

2011-12-18T12:46:00.000-08:00

Annual Report of the Chief Medical Officer for Scotland 2010

Zoonoses
One concerning trend in zoonoses, i.e.
diseases that can be transmitted from
animals to humans, is that shown by the
increase in lyme disease, a tickborne
disorder. The rise cannot be accounted for
purely by changes in laboratory protocols
or in the number or demographics of
patients tested. Variations in climatic
conditions and alterations in clinical
presentations may have contributed to
this continuing rise year on year. This is
also likely to be impacted by improved
recognition and clinical suspicion.

http://www.scotland.gov.uk/Publications/2011/12/13153419/0

In England and Wales, the provisional figures for the first 3 quarters of 2011 have just been released. The laboratory confirmed cases for weeks 1-39 (approx. Jan – Sept) rose from 768 in 2010 to 968 this year – an increase of 26%.

http://www.lymediseaseaction.org.uk/latest-news/concern-about-rise-in-lyme-disease-cases/

THERE WAS NO MORE INFLAMMATORY DISEASE WHEN THE BACTERIA WERE ELIMINATED

2011-12-09T01:42:00.000-08:00

In some genetic backgrounds of mice, acute inflammation is sufficient to fight off infection and resolve disease. In other mouse strains, the pathogens, or in this case the bacteria, get past TLR-induced inflammation and remain symptomatically undetectable in cells and tissues (Barthold, etc); Barthold et al. have found that no matter how severe or mild the disease in any of the genetically inbred strains of mice, there was no more inflammatory disease when the bacteria were eliminated. If bacteria find a new disguise, and then come out of hiding, does the process start over again, resulting in chronic, or relapsing remitting, symptoms of inflammation, until the pathogen finds a new disguise or a new hiding place? Or, even if the Borrelia remain dormant, does exposure to a different pathogen that also produces TLR agonists re-trigger the expansion of latent pro-inflammatory cells that were initially stimulated by Borrelia TLR binding proteins?

From Dr Karen Newell Rogers presentation at 2011 Lyme and Tick borne Diseases National Conference details here

SYMPTOM GRAPHER

2011-12-07T08:35:00.000-08:00

With Chronic Illnesses it is difficult to present our symptoms to our Doctors in the short time allotted. It is also difficult to keep a diary of patterns and trends, I know I kept a daily diary for about 5 years.

I had seen one or two charts available at a cost on the Internet but this free access one is definitely the best I have seen so far.

Although designed by a Lyme Disease sufferer I can recognise the value of it for many other Chronically ill patients and in particular those with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome ME/CFS.

I am assured that there will be no data stored other than the e mail addresses for the log in and that can be as fictitious as you choose.

One tip - if after many months a four weekly pattern emerges, that is typical of Lyme Disease so if you haven't considered Lyme as a differential diagnosis then seek a good Lyme Literate Medical Doctor's opinion. Lyme symptoms cycle about four weekly on treatment but also when not on treatment although not everyone is aware of these cycles and when we are at our sickest it is particularly difficult to see a pattern.

Here is the link to the Symptom Grapher here

FOUR UK DOCTORS FAILED TO DIAGNOSE SAM STOSUR WITH LYME DISEASE

2011-12-01T11:19:00.000-08:00

Four Doctors in Wimbledon Failed to diagnose Sam Stosur ( tennis champion) with Lyme Disease.

Neighboring Richmond and other London Parks have been known endemic areas for Lyme Disease for many years according to HPA, what hope us mere mortals of getting timely diagnosis and treatment if such athletes as Stosur and Mel Clarke ( para Olympic champion archer) struggle for diagnosis and proper treatment in endemic areas.

Stosur was fortunate to finally be diagnosed from ID consultant in Florida which led to a couple of months intensive antibiotic treatment including IV, something which is also denied patients in the UK following current restrictive UK guidelines even if patients are fortunate enough to get a diagnosis.

click here

Mel Clarke talks about her difficulties getting treatment in the UK at the House of Commons meeting on Lyme Disease PDF available of the meeting if required.

My latest letter from Department of Health via my MP Anne Milton says 'A diagnosis of Lyme Disease can be made by a clinician on the basis of typical symptoms and known exposure to a tick bite ---' Interestingly our GMC seems to have confirmed this despite our 'expert' at HPA reporting doctors to GMC for not following HPA restrictive Guidelines.

'The controversy over Lyme Disease is the biggest medical disgrace ever' quote from a UK consultant.

Thankfully the Department of Health initiated 'The Information Standards Scheme' has now accredited the Lyme disease Action charity.

'Lyme Disease Action has been certified as a provider of high quality health information by The Information Standard scheme. This scheme was developed by the Department of Health to help the public identify trustworthy health and social care information easily. At the heart of the scheme is the standard itself – a set of criteria that defines good quality health or social care information and the methods needed to produce it.

To achieve the standard, organisations have to show that their processes and systems produce information that is

accurate
impartial
balanced
evidence-based
accessible
well-written

Accredited organisations have to show that where there are alternative views these are considered and presented; that information is truly evidence based and thoroughly researched from reputable sources.

Balanced, reliable information on Lyme disease is hard to come by, but LDA has achieved it. Doctors and patients can now use the information on this website secure in that knowledge. If someone quotes other sources of information be sure to ask whether those sources are also fully accredited.'

click here for link

LYME DISEASE IN THE UK

2011-11-20T09:15:00.000-08:00

Although the introduction is not English the presentation is in English.

These presentations were at the Lyme Disease Action Conference in 2008
slides available here

LYME RESEARCH UK AND IRELAND - RESEARCH

2011-11-18T04:13:00.000-08:00

New survey of the experience of health services of people with tick-borne infections in the UK and Ireland (Eire). This is set up by a group called LymeResearchUk and Ireland in conjunction with the charity Tick Talk Ireland.

This is survey by an independent group of researchers, led by Kate Bloor. She is fully registered with the Social Research Association, and this project adheres to their ethical guidelines.

The easiest way of filling it in is via this link;

http://www.lymediseaseaction.org.uk/latest-news/health-services-survey/

There are several OTHER ways of getting access to the survey.
You can be sent a direct link to the on-line survey, by email contact
lymeresearchuk@btitnernet.com

and/or a copy of the paper version (either email or sent to you in the post, UK or Ireland only).

We need to recruit people far and wide, including those who might not be on websites, have been treated and are better, those who were treated quickly etc.

Please ask permission of contacts before you pass this information on.

If you want an example of the kind of research that has been done, please find the link below. You can also sign up for information via social network sites
(link below).

http://ticktalkireland.wordpress.com/2011/02/14/lyme-policy-uk/

Many thanks for your help and interest.
Kate Bloor

Find Lyme Research UK on
Facebook: http://www.facebook.com/pages/Lyme-Research-UK/

THESE PATIENTS ARE SICK!

2011-11-17T12:29:00.000-08:00

The Emperor’s New Clothes, Chronic Lyme Disease, and the Infectious Disease Society of America

Burton A Waisbren Sr. M.D. FACP
Founding Member and Fellow of the Infectious Disease Society of America

Waisbren Clinic

This essay will start with a definition of Chronic Lyme disease: Chronic Lyme disease is a syndrome that results when individuals who have been inoculated with multiple microorganisms by infected ticks and who have not responded to an initial course of doxycycline develop extreme fatigue, intermittent fever, joint pain, muscle pain, brain fog, concentration difficulties, skin rashes, and in many instances symptoms of autoimmune disease to the extent that they impinge upon their quality of life.

When one comes face to face with patients of this type in whom other diseases are ruled out, it is obvious that something serious is amiss.

It’s a conundrum why a group of respected physicians who are members of the Infectious Disease Society of America have not recognized this and have, instead, written a guideline that essentially denies that the syndrome exists. This guideline has resulted in literally hundreds of patients unable to be treated for Chronic Lyme disease.----------------------

go to the link for the full article here

continued and my favorite piece of research -

'Phillips, in a brilliant critique of the IDSA guidelines, has separated out numerous observational studies that suggest the occurrence of chronic Lyme disease as described in this essay.'

-----------------------------

Treatment of Chronic Lyme Disease: Fifty-One Case Reports and Essays in ...

By Burton A Waisbren Sr MD Facp Fidsa, Burton A. Waisbren, Sr.

This new book written by this brave IDSA doctor is available to buy but also read the first 34 pages here

IN MEDICINE WE DO NOT HAVE POPES OR FLAWLESS SAGE MENTORS.

2011-11-13T14:07:00.000-08:00

Well argued presentation of traditional, conservative, IDSA Approach,November 1, 2011 link here

James Schaller "Physician" (USA) - See all my reviews

Amazon Verified Purchase(What's this?)

This review is from: Lyme Borreliosis in Europe and North America: Epidemiology and Clinical Practice (Hardcover)

Frankly, I am stunned I am doing the first review of this textbook. It shows immense sweat, effort and presents its position very clearly. The authors want to offer hope for cure and to make one tick infection, Lyme disease, seem managable. They are concerned with over treatment, and express common but useful concerns.

I have read most of the references in this book for my own new 7TH tick and flea infection text, and for others on TBD coming. While I would appeal that EMERGING DISEASE and AUTHORITATIVE cannot be in the same chapter, and that in tick and flea infection medicine triumphalistic speech is not possible, it is good that liberty allows scientists, such as these with doctor of medicine degrees, to publish freeely on what they feel is the best approach and why. They are clear and readable. The "why" is clear.

Of course Kuhn and dozens of others have shown objectivity in medicine and science is an illusion, and we bring so much of our inner self, our presuppositions, to how WE handle over ten thousand references and over 50,000 diagnosed patients who are positive with a tick infection. This does not apply to any single position, but to every position related to these emerging infections.

I love difference, and feel fear of difference is sad and in dealing with fully trained doctors of medicine, it is not the place to report or threaten traditional physicians or ones that take soberly what we all see--some people are not better after a solid treatment of one or two infections. Meaning, some people are very sick, and fail every type of treatment model.

I appreciate any hypothesis of what we should do with patients still not better after 2, 4 or 8 weeks.

I will defend any doctorate of medicine to write and present a plan that makes sense to them and thier study and experience.

LET ME BE VERY CLEAR. I TREAT OR EXAMINE PEOPLE TREATED BY EVERY SCHOOL OF THOUGHT IN TICK AND FLEA INFECTION MEDICINE. WE ALWAYS FIND THINGS THAT SHOW MORE IS GOING ON THAN PREVIOUSLY REPRORTED.

I LEARN FROM ALL, AND AM IMMENSELY CAREFUL DUE TO CONCERNS EXPRESSED BY EVERY GROUP AND CAMP.

AND FEEL THIS IS EMERGING AND GROWING AND WE NEED TO ADMIT THAT "CO-INFECTIONS" ARE NOT CO--ANYTHING, BUT ROUTINE, AND ROUTINELY MISSED.

LYME ALONE WITH NO VIRUSES, OTHER BACTERIA AND PROTOZOA IS QUESTIONABLE AFTER A DEEP READING OF 4,000 ARTICLES AND THE UNDERSTANDING OF THE PETRI DISH GUTS OF THE I. SCAP. TICK.

The doctor who says I am wrong on position 230 serves me, and makes me want to listen. The doctor that wants to remove someone's practice is niave, fascist, and has no understanding of power, contacts and influence of people to act against

They also do not see what they do not know. This is not science. It is gang warfare. We cannot do it another month to any MD.

We need to drop the raving and hate speech. It is not science. It is not medicine. It is not even a 200 level college class of the philosophy of knowing or modern philosophy of science.

I have seen every position of the dozen approaches used all over the world, help and harm people. This medicine covers at least fifteen specialties, and if that is new, your clinical knowledge of the domino effect in systems of the body needs a tune up.

IN CONCLUSION, I AM ALWAYS IMPRESSED BY THESE AUTHORS, AND WOULD FIGHT FOR THIER RIGHT TO HOLD THESE POSITIONS. I ONLY ASK THAT THEY APPRECIATE THAT current science IS OUTDATED IN SIX MONTHS EVEN IF THEY DO NOT KNOW--THE FLOOD OF PAPERS REQUIRES 50 HOURS OF READING A WEEK.

THANK YOU. YOU DO NOT NEED TO EMBRACE MY MODERATE POSITION. AND IT IS LIKELY WE ARE SEEING EACH OTHERS FAIURES, WHICH CAN CREATE A FALSE VIEW OF IDEAL TREATMENTS, AND THE MOTIVES OF TICK AND FLEA INFECTION INTERESTED DOCTORS OF MEDICINE.

Good job. I am sure it was not fun to write this position. IT WAS FUN TO READ AS A THINKER AND I COME TO MY OWN CONCLUSIONS. IN MEDICINE WE DO NOT HAVE POPES OR FLAWLESS SAGE MENTORS. Something most of use should recall?

Again, clear and fine writting.

ILADS CONFERENCE TORONTO - A SNIPPET BUT SIGNIFICANT NEVERTHELESS

2011-10-30T13:54:00.000-07:00

Dr Horowitz Talks about Babesia Treatment - presenting at ILADS conference in Toronto 2011

Not included in this video but Dr Horowitz started his presentation talking about his recent visit to China to discuss Babesia with the CDC in China - good to know China is taking not just Babesia but other tick borne illnesses seriously and not being fooled by the IDSA restrictive guidelines.

Dr Jemsek, Dr Jones and Dr Raxlen at ILADS conference in Toronto 2011
Dr Jones touches on pregnancy and Lyme Disease.

Management of Ixodes scapularis bites — Dr Maloney

More information and DVD's will be available from the ILADS website here

WALK IN THE WOODS

2011-10-30T10:01:00.000-07:00

Critical Needs and Gaps in Understanding: Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes: Workshop Report.

Editors
Committee on Lyme Disease and Other Tick-Borne Diseases: The State of the Science.
Source
Washington (DC): National Academies Press (US); 2011.
The National Academies Collection: Reports funded by National Institutes of Health.

Excerpt
It was obvious to participants at the workshop that a significant impasse has developed in the world of Lyme disease. There are conflicts within and among the science; policy; politics; medicine; and professional, public, and patient views pertaining to the subject, which have created significant misunderstandings, strong emotions, mistrust, and a game of blaming others who are not aligned with one’s views. Lines in the sand have been drawn, sides have been taken, and frustration prevails. The “walk in the woods” process of conflict resolution or a similar process seems necessary for creating a new environment of trust and a better environment for more constructive dialogue to help focus research needs and achieve better outcomes. Such a process does not imply a compromise of the science but rather is needed to shift to a more positive and productive environment to optimize critical research and promote new collaborations.

Go to the link here to read this excellent report laid out into easily accessible sections.
______________________________________________________

WALK IN THE WOODS - this process is so long overdue and aptly named in more ways than one, I spent the weekend listening to the ILADS 2011 Toronto conference streamed live - so much research is available and has been from 20,30+ years, even written by the IDSA denialists themselves, showing Lyme Disease and other tick borne illnesses to be difficult to test for and capable of persistent infection despite several courses of antibiotics - why do our Health Departments choose to ignore such a body of evidence?

It makes no sense which ever way you consider this - the health burden costs in themselves would make economic sense in ensuring that people are early diagnosed and treated not to mention adequate treatment for those of us who develop a chronic Lyme Disease, that's without the most obvious need to improve the quality of life for so many patients who like me have an antibiotic responsive illness following a tick bite.

It was a walk in the woods next to my home where I was bitten by ticks that caused my Lyme Disease illness and there is a growing number of my neighbours also infected, here's hoping this process of 'Walk in the Woods' - helps to get our doctors really working hard together to reduce this growing burden of ill health.

DOCTORS IGNORING SCIENCE

2011-10-18T02:15:00.000-07:00

This was on the MEASSOCIATION website here

Dr Andrew John WRIGHT
GMC Reference Number: 2825184

Area of practice: Lancashire

Planned dates: 17 October to 25 November 2011
St James’s Building, 79 Oxford Street, Manchester, M1 6FQ

The Fitness to Practise Panel will meet at St James’s Building, 79 Oxford Street, Manchester, M1 6FQ to consider a new case of impairment by reason of misconduct.

The Panel will inquire into the allegation that between 2003 and 2006, Dr Wright, a General Practitioner, ran a private practice specialising in the management of fatigue disorders. It is alleged that Dr Wright instructed the Bowen Research and Training Institute, Florida, to test samples of six patients’ blood despite the Institute not being licensed for clinical laboratory testing. It is also alleged that in respect of a number of patients Dr Wright made diagnoses which were based upon inadequate evidence and subsequently initiated treatment.

The above reflects the allegation as it stands at the start of the hearing. The allegation may be amended as the hearing proceeds and when findings of fact are made by the Panel. If you require up to date information regarding the allegation throughout the course of the hearing, please contact the GMC’s Press Office.

In accordance with Rule 41(2) of the General Medical Council (Fitness to Practise) Rules 2004, the Panel may decide to exclude the public from the proceedings or any part of the proceedings, where they consider that the circumstances of the case outweigh the public interest in holding the hearing in public.

This was my response I would have liked to say so much more infact I'd have liked to throw all my blog posts at the MEAssociation and the GMC:-

There has been a concerted effort by our HPA to take out any doctor that dares to diagnose or treat patients for Chronic Lyme Disease regardless of whether patients have benefited from that treatment.

D of H reply to me recently ‘The Department is well aware of certain medical practitioners in the UK whose diagnosis and inappropriate treatment for Lyme disease puts patients at risk.’ Seems to me decisions were made even before these doctors come before a GMC hearing.

I was one of the fortunate patients who was given a clinical diagnosis of Lyme Disease (not by AW) and treated on long term antibiotics in line with International Lyme and Associated Diseases Society. I have recovered from painful debilitating arthritis and muscle weakness which was initially diagnosed as Fibromyalgia and then ME/CFS and later Polymyalgia Rheumatica until a chance course of antibiotics led to significant improvements. I was retired early on the grounds of ill health from the Civil Service but now I have my health and my life, with no pain and no disability.

Our Health Authorities are disregarding the wealth of research that shows this illness like other Borrelia to be a relapsing remitting illness capable of evading our immune system and short courses of antibiotic treatment. Visit the ILADS website for more information and Lyme Disease Action Website for information related especially to us here in the UK.

Last year the Institute of Medicine held a workshop on Lyme Disease and other tick borne illnesses their findings ‘Significant Gaps Remain In Understanding of Lyme Disease.’

Dr S O’Connell presented at that workshop and her presentation is still available to watch and listen to on their website. Dr O’Connell says in her presentation ‘we all agree we need improved diagnostic tests for all the tick-borne diseases.’

Current NHS tests for Lyme Disease can, according to some research, miss 50% of cases, they are antibody tests and the makers of those test kits used by our NHS – Trinity Biotech says that a ‘Negative results (either first or second-tier) should not be used to exclude Lyme disease.’

Dr O’Connell reported our doctors specialising in treating patients with Lyme Disease to the GMC, she will be called as the ‘expert’ witness, she is very well aware of the controversy that shows this disease to be far more complex than HPA accept following the restrictive and discredited IDSA guidelines.

At the IDSA review hearing the final report threw out any research that was done in Europe for the reason that in Europe we have several different species of Borrelia than in the USA, because they presented differently and had different illness patterns – information can be found on LDA website. We need clinical guidelines that are appropriate for us here in the UK.

For further reading see ILADS website for presentations given to IDSA review hearing in particular Steven Phillips presentation of 25 studies on seronegativity and persistent infection on 18 occasions the authors of the IDSA contested guidelines were involved in those studies and yet chose to ignore them in their restricted guidelines.

The GMC are being mislead into thinking they just have a bunch of wayward doctors out to make a fast buck- in reality we will find one day that they are very courageous doctors realising that this is the biggest medical disgrace of all time and struggling against all odds to find ways to help their patients get better and get their lives back.

We don’t know all the answers and they will be the first to acknowledge that, but we do know that some of us do respond well to long term antibiotic treatment.

If those denying this disease in it’s Chronic form would put as much effort into looking at the thousands of research papers (over 19000) then science could move on and make a significant contribution in helping patients who have an antibiotic responsive illness following a tick bite.

I hope others will comment on the ME Associations website and tell it as it is for patients with chronic Lyme Disease. here

NEOLITHIC MAN HAD LYME DISEASE

2011-10-17T14:23:00.000-07:00

Iceman Autopsy finds Borrelia - Lyme Disease - 5,300 years ago this Neolithic Mummy was frozen and preserved.

Read the full article in the National Geographic here

'Perhaps most surprising, researchers found the genetic footprint of bacteria known as Borrelia burgdorferi in his DNA—making the Iceman the earliest known human infected by the bug that causes Lyme disease.'

Hmm! somewhat more to this than IDSA with their restrictive Guidelines would have us believe.

SOME PATIENTS WITH ME/CFS RESPOND TO TREATMENT FOR CHRONIC LYME DISEASE

2011-10-10T01:57:00.000-07:00

I have been wanting to update on the situation re XMRV but have been busy reading what has been unfolding which is so complex, I decided Ken Friedman's podcast gave a good summary but with so much more of interest.

Earlier post here about Ken.

(Partial/near complete?) Transcript of Ken Friedman's recent podcast on IACFS/ME conference
by XMRV Global Action on Sunday, 09 October 2011 at 18:43

[lp:Great thanks to Jane Clout for the transcription and for sharing it & to Tom Kindlon for posting it to co-cure.org]

[TK: Jane Clout took the time to prepare this (partial/near complete?)
transcript and posted it today on mecfsforums with permission to
repost. @XMRV_GA yesterday found an alternative link that may work in
all browsers for those who want to listen:
http://www.radio4all.net/index.php/program/54805 . I can't listen at
the moment so can't comment on accuracy . Tom (@TomKindlon) ]
----------------------------------------------------------

http://bit.ly/qZPapF i.e.
http://www.radio4all.net/files/dialogue@radio.fm/1763-1-disRKenFreedmanChronicFatigue59m52s.mp3

Dr Ken Freidman on the future for Chronic Fatigue Syndrome research
and treatment - thoughts from the IAME conference.

This recording doesn't play properly until 12:00, and even then there
are breaks in the recording until the second half. I'm transcribing
that section, because Ken has some important stuff to say there. I
just wish I could hear it all.

Having played it right through and gone back to the start, it seems to
be playing ok now. Loading problems.

Disrespect welcomes Dr Ken Friedman.

04:00 Ken: "In the United States there was just a very recent - I'm
going to use the term battle -with regard to the ICD because the US
government was going to place Chronic Fatigue Syndrome as a somatoform
disorder as opposed to maintaining it as a neurological disorder so a
group of organisations banded together and wrote a long, very
scientific argument as to why Chronic Fatigue Syndrome should not be
considered a somatoform disorder but rather a neurological disorder,
and went to essentially an appeal hearing in Baltimore, Maryland on
September 14th and presented their argument, their document, and what
we were told is that based upon the strength of that document, and the
scientific arguments, that in fact Chronic Fatigue Syndrome would be
retained as a neurological disorder and not moved into a somatoform
disorder. So we are very pleased with that but we certainly want to
maintain that from this point going forward.

05:17 Interviewer: Asks question about difference between Neuro and
Somo disorders... Ken explains. Talks about prejudice against people
who work in the field, the difficulty in getting disability insurance
payments, and doctors under investigation for treating biomedically,
including Myhill, and one other whos name is not yet in the public
domain and is not given here either.

10:00 Talks about his SOK presentation April 6th this year and the
prejudice against researchers and patients and doctors. "The
underlying thing (belief) is that if you don't have a test for it,
then it doesn't exist" Goes on to talk about sectioned patients in
England and forcibly removed children in the US

15.30 Music break

18:44 Interviewer: "Did the conference hold out hope for any of
these situations in its attempts to change the view of CF and of new
research?

Ken: I think there is - um - I think we all, both patients and
researchers and healthcare providers left the conference with a much
more positive attitude, and I think that because we all left knowing
that it is still a puzzle and that we do not have all the answers or
know all the pieces of the puzzle but that we are divising a method or
methods of working with the pieces of the puzzle. For example, there
are now at least four different definitions of Chronic Fatigue
Syndrome, and we think we have a pretty good research definition of
Chronic Fatigue Syndrome and a pretty good definition for diagnosing
and treating Chronic Fatigue Syndrome.

Interviewer: Care to share any of those?

Ken: Well the research definition that seems to be used is something
called the Fukuda case definition, Fukuda et al, which dates back to
1994, and that definition has been used since that date forward. It
is much more restrictive a case definition than one would like to see
used on patients, but it helps to define a patient population that is
relatively suffering from similar symptoms and so therefore for
research purposes you are apt to get results that are clearly defined

Interviewer: So it's a conservative definition

Ken: A conservative definition that may exclude some patients and
therefore is not workable in a clinical situation.

In the clinical situation, you want something that is more relaxed, or
a more inclusive definition, and there are actually a couple of
those. There's what's called the Canadian case definition, which was
developed in 2003, 2004, and that seems to be very good at identifying
patients and their key symptoms, and having them diagnosed as having
Chronic Fatigue Syndrome and then there is a brand new one that has
been developed in 2011 that is called the International case
definition, and that one is essentially too new for anyone to have any
sense of how it will fare, as either a patient case definition or as a
research case definition.

But what seems to have happened at this meeting is that there seems to
be agreement that we will collect data or get information from each
patient that will permit us to diagnose patients using several of
these case definitions, (interviewer: really?) so that the information
will not be lost, and so that we will then in retrospect be able to
see which case definition works best, both in the clinical situation
and in the research situation, and that's a much more intelligent
approach than trying to squeeze all patients into one case definition,
and obviously excluding some patients from treatment because they
don't fit this particular case definition.

(i.e. suck it and see. This bit really worries me. jc)

One of the interesting papers that was presented at this meeting was
by a clinician, I believe he's at GW, near Washington DC, was sort of
a courageous thing, what he did was he took his Chronic Fatigue
Syndrome patients, and he treated them for Lyme disease, and
approximately a third of them improved, their physical condition
improved when treated for Lyme disease. Its not sure exactly what
that means. We're not sure whether that means that approximately one
third of the patients in his patient population had Lyme disease, and
were just missed with the Lyme disease diagnosis, but when they were
treated for Lyme disease actually improved, or whether the actual, or
their particular kind of Chronic Fatigue Syndrome is susceptible to
the same sort of treatment with anti-biotics that are used in the
treatment of Lyme disease, so that there is at least potential overlap
between Chronic Fatigue Syndrome and other illnesses, and this is
something that needs to be looked at much more carefully.

24:15 Interviewer: And you spoke of multiple causes too, or multiple origins?

Ken: Yes, I do believe that there are multiple origins, and I
believe that the majority of clinicians and researchers at this
meeting were coming to this point of view. Because there are a number
of infectious agents that have been found to be initiators of the
illness cycle in patients. One of the names, former names of Chronic
Fatigue Syndrome was chronic Epstein Barr Virus, and now there is work
to show that patients that get sick with other viruses also develop
Chronic Fatigue Syndrome. HHV6 for example, and enterovirus. If
patients do not recover from these viral infections they can develop
Chronic Fatigue Syndrome. So it would appear that Chronic Fatigue
Syndrome is essentially the body's response, or perhaps the body's
immunological response to an infection that isn't cleared from the
body, which might argue that the people in whom this occurs have
immune systems that are unable to clear these infections and therefore
Chronic Fatigue Syndrome represents an immune system abnormality or
defect because these patients lack the ability to clear these
infections from their body.

Interviewer: And they have an immune system what? Inability?

Ken: Inability or defect to clear these infections from their body
and so they persist.

Interviewer: Yes, I think immune abnormalities have long been found in
Chronic Fatigue patients haven't they?

Ken: Immune abnormalities have been found. The problem is that there
isn't one consistent finding. And perhaps the reason for that is that
there are these sub-categories of Chronic Fatigue Syndrome patients
and that if we define the right subcategory of Chronic Fatigue
Syndrome patients then we may be able to find a clear, uniform,
distinct pattern of immunological abnormalities in a subset - in this
particular subset of Chronic Fatigue Syndrome patients.

Interviewer: So then the job becomes defining the subsets?

Ken: Absolutely. And researchers are beginning to turn their
attention to that, and some of the questionnaires that are being
developed to screen Chronic Fatigue Syndrome patients are beginning to
ask questions that will assist us in being able to differentiate the
subgroups and perhaps the infective agents that are precipitating
Chronic Fatigue Syndrome in these patients.

27:20 Interviewer: So this is a hypothetical, broad immune response
to neurological agents of possibly many origins with a common human
adaptation to it which involves fatigue and neurological abnormalities
and consequences - am I correct? Is this what's hypothesized?

Ken: Well the agents are believed to be infective, and they don't
necessarily have to be neurological, although some of them may be.
There is another theory that's beginning to go around now, and that is
that if infectious agents are not cleared from the body they can
establish themselves in one or more of what's termed the body systems,
for example the gastrointestinal tract or the central nervous system
or in the cardiovascular system so that we are now beginning to see at
least the suggestion that things like cardiovascular disease or
hardening of the arteries or the deposition of plaque in the arteries
is not only caused by the deposition of cholesterol, but might also be
the reaction to some bacteriological agent that has been deposited in
the blood vessels and therefore the plaque is an attempt to cover up
or seal off those kinds of infections. And so Chronic Fatigue
Syndrome in an analogous manner may be a reaction that is akin to that
kind of mechanism

29:15 Interviewer: Yes, there are so many effects, and now you are
saying there are so many agents

Ken: Well, the idea is to tease them out. I'm pretty exited by it
because I think what we are beginning to see is a whole new area
opening up to us about how infection invades the body and the
consequences of it. And so that what we discover about chronic, what
I would call hidden infections in the body will be applicable to a
whole variety of diseases and answer a lot of questions that have been
around for a long time but have never been answered before. And this
will give us a tool, a mechanism of possibly providing answers to
these questions.

30:00 Interviewer: What else came out of the conference that you took away?

Ken: What I took away from the conference is first of all the
willingness to work with multiple questions that lead to the
possibility of diagnosing patients by multiple case definitions. I
think there is a renewed excitement in the involvement of the brain in
Chronic Fatigue Syndrome because there is more evidence of different
kinds. I think there is also a lot more work in the area of genetics
and Chronic Fatigue Syndrome. People are looking ate genes being
turned on, being turned off in what I call the subsets, or some
subsets of Chronic Fatigue Syndrome versus "normal subjects". They
are being able to find differences, or particular genes being turned
on and turned off. And based upon that they are looking for proteins,
or protein differences, or differences in concentrations of proteins
between patients and normal controls. And so we are beginning to see
what the differences are between normal controls and patients with
Chronic Fatigue Syndrome. And this is all very exciting because
eventually we will be able to understand the differences between
normal healthy people and Chronic Fatigue Syndrome patients by
understanding the difference in the molecules that they are producing.
And once we do that, we should be able to alter, or change back, or
normalise the molecules that they are producing that are producing
their symptoms.

32:15 Interviewer: Wow! And that sounds quite in line with current
research too, it doesn't sound far afield

Ken: No, it's not far afield, and what it means is that there is
new excitement, and that the field of Chronic Fatigue Syndrome is
keeping up with the more advanced technologies and people are
beginning to apply those technologies to the field of Chronic Fatigue
Syndrome. Not only are they beginning to apply it to the field, but
they are also obtaining results, significant results that will
eventually lead to better treatments.

http://www.radio4all.net/files/dialogue@radio.fm/1763-1-disRKennethFreedmanChronicFatigue59m52s.mp3

Dr Kenneth Freidman on the future for Chronic Fatigue Syndrome
research and treatment - thoughts from the IAME conference.

music break until
36:25 Interviewer: Where's the leading edge of the research and the
treatment right now:

Kenneth: I believe the leading edge of research and treatment will be
in two area. One will be in the neurological, in the involvement of
the brain, and the other will be in the genetics and the proteins, or
what's called the proteanomics of Chronic Fatigue Syndrome, those to
me at this point seem to be the two most promising areas. And again,
those are the areas that are keeping up with the most sophisticated of
treating all diseases, and trying to make gains in all diseases

Interviewer: Which is why you said that it's keeping up - in other
words, its in the mainstream of research to treat diseases

Kenneth: That's correct. At the meeting we had people, granted mostly
from the United States, some from Canada, some from Norway, Japan,
Australia, New Zealand, there was one fellow there from France, I'm
afraid I'm going to leave someone out and I may be chided for it but
essentially the research is coming in from all over the world.
There's a fellow there from Spain, who presented a lovely paper in a
session there that I chaired, so I believe that it's all over the
world.

38:00 Interviewer: There's an initiative, the Chronic Fatigue
initiative, that's attracted prominent professionals that have been
treating Chronic Fatigue Syndrome some of them for as long as 20 - 25
years, can you tell us anything about that?

Kenneth: Well the Chronic Fatigue Initiative is relatively new, and I
don't think that they are at the point where they are actually
expending grants. The board of the IACFS/ME did meet with the folks
that run the initiative, and what we were told is that they wish to
stimulate Chronic Fatigue Syndrome research, and they are at the point
where they are gathering information to essentially determine the
status of Chronic Fatigue Syndrome research, and what they will be
doing is formulating a series of questions which they believe will
most quickly and expeditiously provide initial research results that
will stimulate other research that will provide treatment and get at
the cause of Chronic Fatigue Syndrome.

Once they have formulated those questions, they will put out a request
for proposals to address those particular questions about Chronic
Fatigue Syndrome. It's going to be a very targeted program based upon
what they feel will be the most productive research challenges that
need to be addressed in order to quickly get to treatment and
potential cures of Chronic Fatigue Syndrome.

And I should add that there is another organisation that is coming out
of the gate, if you'll permit me to use that term, and that is called
Simmeron Research which is headed up by a group of people who are of a
similar mind, namely to promote research into Chronic Fatigue Syndrome
that will yield results in a short time-frame, and the director of
this program is a well-known internist by the name of Dan Peterson.

Dan has been working with Chronic Fatigue Syndrome patients for I
guess somewhere between twenty-five and thirty years. (int: He's in
Nevada, isn't he?) Yes, yes, Incline Village. So he has been I guess
the resource that is responsible for the formation of Simmeron and
again, this is another venue for stimulating research.

And of course we also have the Whittemore Peterson Institute where
Annette Whittemore, also with the assistance of Dan Peterson have
established a research institute, and they certainly have shaKenneth
up the field of Chronic Fatigue Syndrome and stimulated a lot of
research about Chronic Fatigue Syndrome with their initial finding of
XMRV in a large percentage of a defined patient population with
Chronic Fatigue Syndrome.

These are new players, I would call them, to the field of Chronic
Fatigue Syndrome that will bring an element of excitement, and
hopefully will accelerate Chronic Fatigue Syndrome research, not only
by virtue of their own investments into Chronic Fatigue Syndrome
research, but also by stimulating the Federal Government to pay
attention and to also put in more funds to Chronic Fatigue Syndrome in
order to balance out these private research efforts.

42:10 Interviewer: You hear that? Federal Governments everywhere,
pay attention!

You mentioned XMRV too, and I think that was dealt with ambivalently
at the conference wasn't it - there was one rese...

Kenneth: Oh, I would not characterize it as ambivalence, I would
say that there are a number of findings that put the initial 2009
Science paper into doubt. The Whittemore Peterson Institute and, I
would characterize her as the lead researcher, Judy Mikovits, still
maintain that there are many questions generated by their initial
finding that have not been addressed by the papers that have come out
subsequently, that tend to characterize their initial findings as
being negative,

and that before the issue of XMRV is fully understood, that much more
research has to be done, that the WPI is continuing to do research on
XMRV, and so are many other laboratories, in an attempt to understand
what is the relationship of XMRV to Chronic Fatigue Syndrome, and now,
if the results presented at this particular conference are to be
believed, the relationship of XMRV to a lot of cells in culture, and
possibly even to a lot of vaccines that are currently being used
throughout the United States and throughout the world.

The situation is far from resolved. It begs to be resolved. And
hopefully it will be resolved.

44:30 Interviewer: So what I describe as ambivalence, is described by
people like Judy Mikovits as a need to resolve unresolved implications
that the research has uncovered. (Kenneth: Correct.)So ambivalence
would not describe the researchers attitude at all.

Kenneth: No, I don't think there is ambivalence. It depends upon how
you wish to view Judy's data. If you look at it one way, it pertains
to Chronic Fatigue Syndrome, if you look at it another way it has
consequences throughout the world and throughout laboratories who do
tissue cultures throughout the world.

And there was one report there that XMRV is a contaminant that has
contaminated commercial products that are used in tissue culture. And
if that's the case, if that proves to be the case, then the
implication is of tremendous impact and of tremendous consequence to
tissue culture and all the research that is done using tissue culture,
and if that is the case then Judy Mikovits needs to be applauded for
what she has done in terms of uncovering this contamination, which is
far beyond anyone's initial expectation.

45:50 Interviewer: OK, so the relationship of XMRV to chronic
fatigue is still unestablished

Kenneth: The relationship to Chronic Fatigue Syndrome is still
unestablished, and the initial - I would go as far as to say the
initial hypothesis has been called into question, but it remains
unresolved

Interviewer: What would you like to summarise your experience at the
conference with before we close?

Kenneth: I think it was a great conference. I think that the world
is paying more attention to Chronic Fatigue Syndrome. I think that
Chronic Fatigue Syndrome as demonstrated at this conference is there
is a huge amount of very promising data. There was a summary of the
conference provided by Tony Komaroff, which is a name for people that
have been following Chronic Fatigue Syndrome research will be familiar
with.

He's a well respected Chronic Fatigue Syndrome researcher and
commentator, and he provided the overall summary, and at the end of it
he was asked "Which of these projects do you think deserves the most
attention" and his statement in response was that they all do. They
are all exceedingly promising results and I agree with that.

The only thing I would add is that these are all exceedingly promising
results done on relatively few patients with relatively or
comparatively relative small budgets and that there needs to be an
infusion of much more money into these studies, now that their promise
has been shown. I think that as we have now all learned, based on the
jumping in of these few new benefactors to Chronic Fatigue Syndrome is
that we cannot rely solely on federal governments to support Chronic
Fatigue Syndrome.

That we need benefactors but benefactors are few and far between, and
so I believe that the patient population, or patient populations
throughout the world really do need to get more involved and support
these kinds of research. And now with the advent of what is termed
social media, people are getting on social media and saying "tomorrow
is my xx birthday, and instead of sending me gifts because I am a
patient, send money to this or that research institute or send money
to this organisation to fund clinical care services.

And that I think is the only way that we will be able to achieve the
magnitude of funding that we will need to be able to make Chronic
Fatigue Syndrome understood in terms of pathophysiology, to make it
treatable, with definitive treatments in a time frame that will
benefit the patients who have it now

49:25 Interviewer: I appreciate that point of view, it's quite
compelling. Perhaps, only perhaps because I'm not personally
acquainted, I understand the attitude with our federal government is
that we are not going to be able to meet our need for skilled workers
in the near future by immigration alone, that we need to expand the
number of people who work past retirement, and that in that light they
might be willing to look at something like chronic fatigue as limiting
a great number of the population who could contribute to the workforce
and the tax base in the future

Kenneth: Well it would be wonderful if any federal government would
be willing to put more money into Chronic Fatigue Syndrome. I think
that in most countries it's the patients who have to advocate for
greater federal funding. Not only do we need to keep older
researchers working in Chronic Fatigue Syndrome but we need to somehow
stimulate new researchers into the field of Chronic Fatigue Syndrome
which raises the whole issue of how do you do that?

Unfortunately Chronic Fatigue Syndrome because it is an underfunded
area of research, most young researchers when looking for a career in
research, are not going to go there, they are going to go to the
better funded areas because that is where they see that they can earn
a living. I think that we need to address the concern that Chronic
Fatigue Syndrome is a viable area of research by demonstrating that
there is funding for it and consistent funding for it. In the United
States several years ago we had five centers of excellence, and then
precipitously the government said "We're not doing this any more".

51:22 Interviewer: And they were centers for research, for
promoting research?

Kenneth These were centers for research, for research and clinical
care, spread throughout the United States, and the federal government,
the National Institute of Health who funded it, decided they were not
going to do it anymore, and so the centers closed. The people who did
the research in the centers, who were senior researchers, junior
researchers laboratory research associates and technicians, were then
without funds, were without salary, so what were they to do? They
were forced to go into other areas, and I suspect that if one ever did
this study they were loath to coming back

Interviewer: Well I understand we established a new center in BC in
British Colombia in Canada for chronic fatigue, but I don't know..

Kenneth: Yes, and when it was done, I clipped the announcement of it
that I received, and I sent it to the Center for Disease Control and I
said "If British Colombia can do this, why can't we?" (int: yes
exactly, exactly) so I applaud the province of British Colombia, and
I hope that other provinces can do the same. And I hope that the
Canadian experience will embarrass governments in other countries to
do the same

Interviewer: I hope you're right! I appreciate all the time you've
spent with me, it's been a very thorough interview.

Kenneth: Well I hope that I have been able to both illuminate, and
also to provide hope and to provide inspiration and to provoke
enthusiasm of the Chronic Fatigue Syndrome community that you serve,
in Chronic Fatigue Syndrome research and patient care, and to please
not give up on us - the educators, the researchers, the clinicians
because we really are trying our best to meet the needs and advance
the field of Chronic Fatigue Syndrome.

Interviewer: And again, I thank you for your time.

Kenneth: You're quite welcome.

Permission to repost both parts granted.

------------------------------
---------------

DOCTORS PUTTING TOO MUCH RELIANCE ON NEGATIVE TESTS FOR LYME DISEASE

2011-10-02T04:17:00.000-07:00

Lyme disease: the next decade

Raphael B Stricker and Lorraine Johnson

The full article is here

Below is just one section regarding testing of Lyme Disease, from this excellent article.

Testing for Lyme disease

As we enter a new decade, clinical testing for Lyme disease remains abysmal.–115 The two-tier algorithm recommended by the Centers for Disease Control and Prevention utilizes a screening enzyme-linked immunosorbent assay (ELISA) or immunofluorescence assay followed by a confirmatory Western blot. Although this approach has a high test specificity, the sensitivity of the two-tier approach in Lyme disease patients tested at least 4 to 6 weeks after infection is only 44% to 56%, which is inadequate for a clinical diagnostic test and, by comparison, far below the 99.5% sensitivity of diagnostic HIV testing.,114,115 Furthermore, the misconception that two-tier testing is highly sensitive for Lyme disease patients with persistent arthritic or neurologic symptoms derives from a study that selected patients based on positive Lyme testing and then showed high levels of two-tier test positivity.115 This circular reasoning is a systematic problem with the evaluation of Lyme testing.

There are a number of reasons for the inaccuracy of Lyme testing, including use of less antigenic laboratory spirochetal strains in the commercial test kits, elimination of important spirochetal target proteins from those kits, and lack of standardization of the commercial Lyme assays.– Gender bias may also be a factor: while chronic Lyme disease is reportedly more common in women, the two-tier test system yields positive results more often in men. Although a newer ELISA targeting the conserved VlsE or C6 peptide of B. burgdorferi has been developed, this test system does not appear to be more sensitive than the two-tier approach.,While molecular testing has been useful for diagnostic confirmation and treatment monitoring in other illnesses, molecular testing for B. burgdorferi has been unreliable, and newer molecular techniques targeting tick-borne agents remain unproven and expensive., Assays for more accessible surrogate markers of Lyme disease have yet to be accepted by the general medical community.– Thus testing for Lyme disease remains problematic.

A newer approach to Lyme testing involves the use of proteomics., Based on the known genetic make-up of the spirochete, numerous proteins can be generated in vitro and tested for antigenicity using Lyme patient sera. In this manner, novel target proteins can be identified, and conceivably new test systems based on these proteins can be developed without even knowing the function or location of the antigens within the spirochete. Work on these proteomic-based test systems is already in progress, but extensive clinical validation will be required to bring those tests to market. Nevertheless the proteomic approach to Lyme testing holds great promise for more accurate serological diagnosis, and development of proteomic testing for tick-borne diseases provides a useful diagnostic model for other chronic and elusive infections. Beyond proteomics, novel test systems that exploit electromagnetic signals generated by bacterial DNA sequences may also prove to be effective in the diagnosis of chronic Lyme disease.,

TWO TESTIMONIES ON CHRONIC LYME DISEASE

2011-09-11T14:13:00.000-07:00

Dr Harold Smith's excellent testimony to the Pennsylvania Public Lyme Hearing August 30 2011

Dr Yost testimony

There are a growing number of doctors who are learning from personal experience or that of a family member about the complexities of Chronic Lyme disease.

When will our Health Authorities really listen to all the evidence about this dreadful disease instead of parroting what the IDSA restrictive and discredited Lyme Disease Guidelines say.

See Lyme Aware Blog for more information here

INTERPRET SEROLOGIC RESULTS WITH GREAT CAUTION

2011-09-02T23:43:00.000-07:00

Large differences between test strategies for the detection of anti-Borrelia antibodies are revealed by comparing eight ELISAs and five immunoblots.

Ang CW, Notermans DW, Hommes M, Simoons-Smit AM, Herremans T.

Source

VUMC, Amsterdam, The Netherlands. w.ang@vumc.nl

Abstract

We investigated the influence of assay choice on the results in a two-tier testing algorithm for the detection of anti-Borrelia antibodies. Eighty-nine serum samples from clinically well-defined patients were tested in eight different enzyme-linked immunosorbent assay (ELISA) systems based on whole-cell antigens, whole-cell antigens supplemented with VlsE and assays using exclusively recombinant proteins. A subset of samples was tested in five immunoblots: one whole-cell blot, one whole-cell blot supplemented with VlsE and three recombinant blots. The number of IgM- and/or IgG-positive ELISA results in the group of patients suspected of Borrelia infection ranged from 34 to 59%. The percentage of positives in cross-reactivity controls ranged from 0 to 38%. Comparison of immunoblots yielded large differences in inter-test agreement and showed, at best, a moderate agreement between tests. Remarkably, some immunoblots gave positive results in samples that had been tested negative by all eight ELISAs. The percentage of positive blots following a positive ELISA result depended heavily on the choice of ELISA-immunoblot combination. We conclude that the assays used to detect anti-Borrelia antibodies have widely divergent sensitivity and specificity. The choice of ELISA-immunoblot combination severely influences the number of positive results, making the exchange of test results between laboratories with different methodologies hazardous.

Comment in

Eur J Clin Microbiol Infect Dis. 2011 Aug;30(8):1033-4; author reply 1035-7.

link here

Serologic Tests for Lyme Disease Yield Disparate Results

When serum samples were tested for anti-Borreliaantibodies using eight commercially available ELISAs and five immunoblot assays, intertest agreement was only modest.

Current guidelines for diagnosing Lyme disease include a two-tier testing algorithm: an enzyme-linked immunosorbent assay (ELISA) for detecting anti-Borrelia antibodies, followed by immunoblot confirmation of positive ELISA results. Commercially available tests are based on sonicated whole-cellBorrelia antigens, recombinant antigens, or a mixture of the two.

To compare the performance of these assays, researchers in the Netherlands tested serum samples for anti-Borrelia antibodies using eight commercial ELISAs and five immunoblots (4 commercial, 1 investigator-made). The 89 samples were from 59 patients with suspected Lyme disease, 14 healthy controls, and 16 patients with syphilis or Mycoplasma pneumoniae infection — conditions associated with highly cross-reactive antibodies.

Of the 89 samples, 35 (39%) tested negative — and 16 (18%) tested positive — on all ELISAs. The remaining 38 (43%) tested positive on one to seven ELISAs. The proportion of samples with positive results on any one ELISA ranged from 34% to 59% for patients with suspected Lyme disease and from 0% to 38% for patients with cross-reactive antibodies. Samples from healthy controls almost always had negative ELISA results.

Thirty-one of the samples from patients with suspected Lyme disease were also tested with all immunoblots. Interblot agreement was low (IgG, 30%–84%; IgM, 0%–46%), and it was no higher for recombinant antigens than for whole-cell antigens. Some samples that tested negative on all ELISAs showed blot reactivity; some that tested positive on all ELISAs tested negative on all blots.

Comment: These findings are sobering and, unfortunately, do not facilitate diagnosis of Lyme disease. Clinicians should rely on a precise clinical determination of Lyme disease, interpreting serologic test results with great caution. Clearly, several possible ELISA/blot combinations do not work together very well. Furthermore, there are true Lyme cases with positive ELISA but negative blot results (depending on the test used), and even a few with negative ELISA but positive blot results.

— Thomas Glück, MD

link here

DR BRANSFIELD SPEAKS OUT TO PA LYME DISEASE HEARING

2011-09-01T14:53:00.000-07:00

Testimony for Public Hearing on Pennsylvania House Bill #272 – Lyme Disease and Related Tick-Borne Disease Education, Prevention(From Dr Robert Bransfield, distinguished psychiatrist, and the President of ILADS:)

Thank you for the opportunity to testify today. I am the President of the International Lyme and Associated Diseases Society, President of the New Jersey Psychiatric Association, a member of the Board of Trustees of the Medical Society of New Jersey, an Associate Professor at RWJ-UMDNJ Medical School, a researcher and a physician who treats patients with Lyme disease, including many from Pennsylvania. I represent the physicians who have the long term responsibility of treating patient with Lyme and associated diseases. I am in strong support of House Bill #272 and reference is made to my August 22, 2010 letter supporting this legislation last year.

In the 1600s Dr Thomas Wynne, William Penn’s physician and the first speaker for the Pennsylvania Assemblies who was also my ancestor treated a smallpox epidemic threatening the early immigrants to Pennsylvania. Today we have a different epidemic—Lyme disease. The recently released CDC Lyme statistics lists Pennsylvania and New Jersey as the two states with the most reported and confirmed new cases of Lyme disease in 2010 (PA: 3805, NJ: 3712 reported & PA: 3298, NJ: 3320 confirmed). The CDC and others recognize the formally reported cases are a small fraction of the actual cases which, according to the CDC, may be 10X the number of reported cases while the research of Boltri demonstrates the actual number of cases may instead be 40X the number of reported cases which would represent over 150,000 new cases of Lyme disease in Pennsylvania in 2010. Clearly prevention has failed. Some will be effectively treated, however a significant that are not adequately treated will progress into chronic illness resulting is a burden of disability, illness and suffering that could have been prevented by earlier diagnosis and treatment. Four National Institutes of Health (NIH) trials documented the severity of chronic Lyme disease symptoms these patients report. One trial described the pain as severe as post surgery patients and fatigue as disabling as seen in multiple sclerosis.

We in mainstream medicine strongly support any program that promotes advancement of public awareness, physician education, research, more accurate diagnosis and adequacy of treatment. As a psychiatrist I often see the failures of our medical system, the most severe late stage symptoms of Lyme and associated diseases are neuropsychiatric and that is why I became involved with Lyme disease. The psychiatric consequences of inadequately tick-borne diseases include a number of severe and disabling mental illnesses, autism, developmental disabilities, dementia and violent behavior. There are some infectious disease physicians and others in the medical community who have minimal training in psychiatry and do not understand that most mental illness is physical injury that impairs brain functioning and many of the so called ―subjective and non-specific∥ symptoms of Lyme disease are objective with adequate testing and are symptoms of sickness syndrome associated with chronic infection. No one on the IDSA guideline panel was knowledgeable about psychiatry and they inappropriately dismissed patient’s symptoms as the –―“aches and pains of daily living”. Refer to the attached list of over 250 peer reviewed medical journal articles supporting this statement.

The National Institute of Health, the CDC and scientists studying the etiology of disease all recognize a growing body of peer reviewed studies published in mainstream scientific journals that demonstrate many common diseases of unknown origin are in fact the result of the presence of slowly acting infections caused by viruses, bacteria or protozoa. Infections are often a cause of many chronic illnesses. Evidence presented during the legally mandated review of the restrictive Lyme guidelines of the Infectious Diseases Society of America (IDSA) has confirmed the potential for persistent infection with the Lyme spirochete, Borrelia burgdorferi, as well as the complicating role of multiple tick-borne coinfections and failure of short-course antibiotic therapy. In addition evidence was submitted that there are mechanisms of persistent infection that allow parasites to evade the immune system and complex interactions between multiple infections. We need to progress forward in medicine and not be hampered by outdated beliefs.

There are two opposing standards of care regarding Lyme disease which are supported by two opposing views and two opposing sets of guidelines—ILADS and IDSA. ILADS, the International Lyme and Associated Diseases Society, is evidence based and defines Lyme disease in a broader and more comprehensive manner and recognizes the limitations of current testing and the complexity of treatment while the IDSA definition is restrictive and places greater confidence in current testing and short courses of antibiotic treatment and a recent review by Lee and Vielemeyer ―found a relative paucity of good quality evidence behind current IDSA guidelines. We academicians, researchers and clinicians within ILADS and those following our guidelines that bear the responsibility to treat these patients recognize the limitations of current testing the complexity, chronicity and seriousness of these problems. The average physician inappropriately uses the CDC surveillance case definition as diagnostic criteria. The CDC website clearly states ―This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis. The Lyme ELISA has only a 46-56% accuracy rate and the Chair of the recent Virginia Task Force on Lyme Disease and Other Tick-Borne Diseases recently stated: "Doctors here in Virginia are committing malpractice by saying the ELISA test is sufficient. Their report is submitted with my testimony. There are multiple other problems with lab testing that I can expand upon. Evidence based medicine recognizes all treatment decisions are a risk vs. benefit clinical assessment that is made using the best scientific evidence available, clinical judgment and patient considerations. There is evidence some patients clearly benefit from longer courses of antibiotics and inadequate treatment of infectious diseases encourages antibiotic resistance. Although all medical treatments have risks, there is considerable evidence that inadequate treatment has been linked with autism, serious neurological, psychiatric, and other disease and death. Acne is treated for years with some of the same antibiotics used for Lyme disease. What gives distant third parties the right to oppose medically necessary treatments for Lyme disease?

We have a serious problem that cannot be ignored. It is puzzling why there is opposition to a bill that establishes a task force to investigate Lyme disease and other tick borne infections, to develop a program of public and professional education and to allow adequacy of treatment and insurance coverage. An increasing number of physicians are successfully treating patients with chronic Lyme and associated tick-borne disease with treatments that are effective and beneficial – allowing patients to have a better quality of life. As physicians we took an oath to protect our patients from harm. Laws, governmental policy and insurance mandates should complement our oath and not oppose it. Texas recently passed Lyme disease legislation because Senator Harris required 17 months of treatment and the previously restrictive IDSA based regulatory policy only allowed one month. As a senator he was able to circumvent regulations by receiving his antibiotics from 17 different physicians, but the average working person lacks this capability. This issue is best summarized by Dr. Benjamin Rush, signer of the Declaration of Independence and personal physician to George Washington who stated—―Unless we put medical freedom into the Constitution, the time will come when medicine will organize into an undercover dictatorship to restrict the art of healing to one class of men and deny equal privileges to others: The Constitution of this Republic should make a special privilege for medical freedom as well as religious freedom. Although it has been stated politicians should not meddle in medical matters, government has a responsibility to protect basic freedoms including the freedom to access to medically necessary care.

Sincerely,

Robert C Bransfield, MD, DLFAPA

President International Lyme and Associated Diseases Society

President New Jersey Psychiatric Association

Board of Trustees Medical Society of New Jersey

Clinical Associate Professor Robert Wood Johnson UMDNJ Medical School

Associate Director Psychiatry Riverview Medical Center

Chair of Psychiatric Quality Assurance Riverview Medical Center

Board Certified American Psychiatry and Neurology in Psychiatry

Certified in Psychopharmacology by American Society of Clinical Psychopharmacology

Distinguished Life Fellow American Psychiatric Association

MEDICAL FREEDOM - THE RIGHT FOR DOCTORS TO TREAT CHRONIC LYME DISEASE PATIENTS

2011-09-01T09:03:00.000-07:00

Dr Bransfield speaks out at Lyme Hearing in Pennsylvannia

PA Public Hearing Lyme Bill HR272 Recap

“House Bill 272 directs the Department of Health to establish a task force to address the issues surrounding Lyme disease. This task force will make and implement recommendations regarding the gaps in education, prevention and surveillance of Lyme and other tick borne diseases in Pennsylvania. The bill will also ensure that Physicians can apply the two different standards of care that exist today for the diagnosis and treatment of Lyme disease. Insurance companies have “cherry picked” which standards of care they will approve – effectively “practicing medicine” instead of doctors. With this bill, physicians will be able to apply longer-term therapies to treat Lyme disease that does not respond to shorter courses. Research has long demonstrated persistence of these infections which are related to syphilis. Lastly the bill ensures that insurance companies will pay for the treatment the physician prescribes, putting medical decisions back in the hands of physicians and patients where they should be made.”

click here for a link

ANTISCIENCE OR SCIENCE OR DESPERATION TO DENY LYME DISEASE PATHOGENSIS

2011-08-23T02:21:00.000-07:00

Antiscience and Ethical concerns associated with Advocacy of Lyme Disease

Summary

Advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments. Some activists portray Lyme disease, a geographically limited tick-borne infection, as a disease that is insidious, ubiquitous, difficult to diagnose, and almost incurable; they also propose that the disease causes mainly non-specific symptoms that can be treated only with long-term antibiotics and other unorthodox and unvalidated treatments. Similar to other antiscience groups, these advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science. The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health.

No prizes for guessing the authors of this poorly presented article.link here

A threat to Public Health? not sure that the authors of the many science articles I have posted on this blog would concur with their Summary.

Now what we really need is more of the following:-

Findings that shed new light on the possible pathogenesis of a disease or an adverse effect
Lyme disease following a dog bite - was there a tick?

David Owen

Summary

Lyme disease is the most common tick borne infection in temperate zones and the reported incidence of the condition is increasing. Erythema migrans is one of the few clinical signs of Lyme disease and is usually indicative of recently acquired infection. A case is presented of Lyme disease with erythema migrans which followed shortly after a dog bite. The author is not aware of any previously reported similar case. The author considers that the development of Lyme disease in the case was most likely due to a coincidental tick bite which was not noticed by the patient but an alternative possibility is that the disease was activated from a latent form. Patients with Lyme disease may not give a history of tick bite and clinicians should be aware of this.

Link here

ANXIETY OR PANIC ATTACKS

2011-08-12T02:41:00.000-07:00

Here's how to gauge whether your anxiety is linked to Lyme disease or other tick-borne diseases:

• Know how different panic attacks work. Panic attacks spurred by Lyme disease or other tick-borne infections are generally different than non-infectious-based panic attacks, explains Dr. Bransfield. A regular panic attack lasts a few minutes, but he says those brought on by tick-related ailments can go on for more than a half hour. If your panic attack symptoms grow worse while on once-effective antianxiety treatment, it's another sign that Lyme or a related infection could be causing the attacks.

• Know when to consider tick-borne diseases. Don't rely on finding a tick attached to your body to gauge your Lyme disease risk: Many people don’t recall being bitten at all, while others notice migrating rashes or red or black-and-blue splotches shortly after being bitten. Other early Lyme symptoms sometimes pop up a few days to a month after infection and include fatigue, fever, and chills. If the disease becomes more established in your body, it could cause cardiac and neurological problems. If you think you've been recently infected with Lyme, ask your doctor to perform blood tests, and if negative, have them repeated about six weeks later. If the results are still negative and you still suspect Lyme, you may want to see a doctor who specializes in treating Lyme aggressively. Doctors should first test to rule out other conditions with similar symptoms.

• Fight with your doctor if you need to. Lyme disease is a contentious subject, with two different schools of thought: Some consider to be a short-term infection, others believe it can be chronic. Some doctors take the threat of chronic Lyme seriously, and believe it should be treated with longer courses of antibiotics; others believe chronic Lyme doesn't exist. (Read Lyme Hearing Highlights a Broken System and Lyme Disease Treatment Guidelines: All Wrong? for more background.) Until more doctors recognize the severity of the disease, if you believe you have Lyme it's best to advocate for a clinical diagnosis using the strategy above.

The above is an extract from a recent article on Rodale to read the full article click here

There are many other interesting posts on work done by Dr Bransfied which searching in the search box on the right of this blog will find or looking at flipcard link top right may help.

ALZHEIMER'S DISEASE - A NEUROSPIROCHETOSIS

2011-08-07T12:57:00.000-07:00

Alzheimer's disease - a neurospirochetosis. Analysis of the evidence following Koch's and Hill's criteria.

Judith Miklossy

Correspondence: Judith Miklossy judithmiklossy@bluewin.ch

Journal of Neuroinflammation 2011, 8:90 doi:10.1186/1742-2094-8-90

Published: 4 August 2011

Abstract (provisional)

It is established that chronic spirochetal infection can cause slowly progressive dementia, brain atrophy and amyloid deposition in late neurosyphilis. Recently it has been suggested that various types of spirochetes, in an analogous way to Treponema pallidum, could cause dementia and may be involved in the pathogenesis of Alzheimer's disease (AD). Here, we review all data available in the literature on the detection of spirochetes in AD and critically analyze the association and causal relationship between spirochetes and AD following established criteria of Koch and Hill. The results show a statistically significant association between spirochetes and AD (P = 1.5 x 10-17, OR = 20, 95% CI = 8-60, N = 247). When neutral techniques recognizing all types of spirochetes were used, or the highly prevalent periodontal pathogen Treponemas were analyzed, spirochetes were observed in the brain in more than 90% of AD cases. Borrelia burgdorferi was detected in the brain in 25.3% of AD cases analyzed and was 13 times more frequent in AD compared to controls. Periodontal pathogen Treponemas (T. pectinovorum, T. amylovorum, T. lecithinolyticum, T. maltophilum, T. medium, T. socranskii) and Borrelia burgdorferi were detected using species specific PCR and antibodies. Importantly, co-infection with several spirochetes occurs in AD. The pathological and biological hallmarks of AD were reproduced in vitro. The analysis of reviewed data following Koch's and Hill's postulates shows a probable causal relationship between neurospirochetosis and AD. Persisting inflammation and amyloid deposition initiated and sustained by chronic spirochetal infection form together with the various hypotheses suggested to play a role in the pathogenesis of AD a comprehensive entity. As suggested by Hill, once the probability of a causal relationship is established prompt action is needed. Support and attention should be given to this field of AD research. Spirochetal infection occurs years or decades before the manifestation of dementia. As adequate antibiotic and anti-inflammatory therapies are available, as in syphilis, one might prevent and eradicate dementia.

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It is good to see further research by Judith Miklossy to visit her website click here and to read the full paper click here

I have posted about Alzheimer's before here of course those of us who have been following the information about Lyme disease are already aware of the work of Alan Mac Donald interviewed in Under Our Skin Documentary visit their website here or watch a Turn The Corner Foundation U Tube where Alan Mac Donald was interviewed. here

ONE IN FIFTY EIGHT CHILDREN IN THE UK WITH AUTISM- HOW MANY CAN BE PREVENTED?

2011-08-02T08:22:00.000-07:00

A new study claims that almost double the number of children could have autism as previously thought.

An unpublished piece of research by Cambridge University's Autism Research Centre (ARC) found that as many as one in 58 children could suffer from the condition, which can affect speech, understanding and communication.

The above article was in the Telegraph in 2007 here

A recent paper by Robert C Bransfield MD

Preventable Cases of Autism : relationship between chronic infectious diseases and neurological outcome.

I don't have the fascility to copy and paste any of this paper but it is a must read, he talks about many chronic infections and their affect on the developing fetus. Access this paper here

CONGRESS ADDRESSES LYME DISEASE ISSUES

2011-07-17T23:03:00.000-07:00

Congress Addresses Lyme Disease Issues

LDA Press Release

July 18, 2011. The all volunteer national Lyme Disease Association (LDA) is pleased to announce the introduction of a bill and proposed legislative actions that focus attention on the growing concerns surrounding Lyme and tick borne diseases.

Congressman Christopher Smith (R-NJ) introduced HR-2557, the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2011, on Friday, July 15, 2011, along with cosponsors Frank Wolf (VA), Tim Holden (PA), and Chris Gibson (NY).

Congressman Smith's bill, HR-2557, requires the Secretary of Health and Human Services to establish a Tick-Borne Diseases Advisory Committee to address a variety of important issues. The Committee will be charged with advising Federal agencies on priorities related to Lyme and tick-borne disease issues and will be composed of scientists, representatives from government agencies, health care providers and patient representatives. The Committee is charged with ensuring that a broad spectrum of scientific and stake-holder viewpoints are represented in public health policy decisions and that information disseminated to the public and physicians is balanced.

Congressman Smith, Chairman of the Congressional Lyme Disease Caucus for the past seven years, has worked diligently to foster greater knowledge about tick-borne diseases over the years. Amongst his many Lyme-related endeavors, he hosted a Lyme and Tick-Borne Diseases Forum last summer in Wall Township, NJ, for health officials, medical professionals and the public, with over 300 people in attendance. Pat Smith of the LDA was one of the guest speakers.

Senator Richard Blumenthal (D-CT) has plans to highlight legislation to combat the spread of Lyme disease. He will meet with volunteer patient advocates from the Connecticut based Lyme disease group, Time for Lyme (TFL), an affiliate of the Lyme Disease Association, at the Connecticut Agricultural Experiment Station in New Haven on Monday, July 18, 2011.

Senator Blumenthal, who served an unprecedented five terms as Attorney General in Connecticut, is known for his efforts to make real and lasting difference in the lives of the people. He has been a long-time public defender of Lyme disease patients rights.

The Lyme Disease Association (LDA), an organization that seeks to eliminate tick-borne diseases by funding research, educating the public, and providing scientific conferences for doctors, is grateful to Congressman Smith, Senator Blumenthal, the bill cosponsors and staff for their enduring commitment to improve the health of countless patients suffering from Lyme and tick-borne diseases.

For more information please visit the LDA website www.LymeDiseaseAssociation.org

Contact Pat Smith, President, Lyme Disease Association, Inc. PO Box 1438, Jackson, NJ 08527. Toll free information line: 888-366-6611. Fax 732-938-7215.

Email president@LymeDiseaseAssociation.org

ANTIBIOTIC SUSCEPTIBILITY - LYME DISEASE

2011-07-16T02:51:00.000-07:00

Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi.

Sapi E, Kaur N, Anyanwu S, Luecke DF, Datar A, Patel S, Rossi M, Stricker RB.

Source

Lyme Disease Research Group, Department of Biology and Environmental Sciences, University of New Haven, New Haven, CT, USA;

Abstract

BACKGROUND:

Lyme disease is a tick-borne illness caused by the spirochete Borrelia burgdorferi. Although antibiotic therapy is usually effective early in the disease, relapse may occur when administration of antibiotics is discontinued. Studies have suggested that resistance and recurrence of Lyme disease might be due to formation of different morphological forms of B. burgdorferi, namely round bodies (cysts) and biofilm-like colonies. Better understanding of the effect of antibiotics on all morphological forms of B. burgdorferi is therefore crucial to provide effective therapy for Lyme disease.

METHODS:

Three morphological forms of B. burgdorferi (spirochetes, round bodies, and biofilm-like colonies) were generated using novel culture methods. Minimum inhibitory concentration and minimum bactericidal concentration of five antimicrobial agents (doxycycline, amoxicillin, tigecycline, metronidazole, and tinidazole) against spirochetal forms of B. burgdorferi were evaluated using the standard published microdilution technique. The susceptibility of spirochetal and round body forms to the antibiotics was then tested using fluorescent microscopy (BacLight™ viability staining) and dark field microscopy (direct cell counting), and these results were compared with the microdilution technique. Qualitative and quantitative effects of the antibiotics against biofilm-like colonies were assessed using fluorescent microscopy and dark field microscopy, respectively.

RESULTS:

Doxycycline reduced spirochetal structures ∼90% but increased the number of round body forms about twofold. Amoxicillin reduced spirochetal forms by ∼85%-90% and round body forms by ∼68%, while treatment with metronidazole led to reduction of spirochetal structures by ∼90% and round body forms by ∼80%. Tigecycline and tinidazole treatment reduced both spirochetal and round body forms by ∼80%-90%. When quantitative effects on biofilm-like colonies were evaluated, the five antibiotics reduced formation of these colonies by only 30%-55%. In terms of qualitative effects, only tinidazole reduced viable organisms by ∼90%. Following treatment with the other antibiotics, viable organisms were detected in 70%-85% of the biofilm-like colonies.

CONCLUSION:

Antibiotics have varying effects on the different morphological forms of B. burgdorferi. Persistence of viable organisms in round body forms and biofilm-like colonies may explain treatment failure and persistent symptoms following antibiotic therapy of Lyme disease.

Link to paper here

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This excellent study may add to why some LLMD's are finding results with starting with cyst busters early in treatment. What a pity the denialists can't be bothered to read such research but instead insist they know that Lyme is easy to diagnose and simple to cure. Let them go live with our symptoms after inadequate treatment.

GERMAN GUIDELINES FOR LYME DISEASE - A SLIGHT CHANGE IN DIRECTION.

2011-07-15T07:47:00.000-07:00

At last a slight change in direction from the overly dependence on the IDSA Guidelines, well done to these doctors for producing these new Guidelines and referencing to more of the doctors who specialise in Chronic Lyme disease and have a better understanding than the narrow minded doctors who only see an acute form and thus they believe we can all be cured in just a couple of weeks antibiotics!

Most of the patients I am in touch with failed the IDSA's treatment of a couple of weeks antibiotics but have made significant progress on longer courses of treatment.

Deutsche Borreliose-Gesellschaft e. V.

Diagnosis and Treatment of Lyme borreliosis

Guidelines here

Just a few points mentioned

Chronic Lyme

Latency 8 years before symptoms developed.

50% not aware of tick bite

50% no EM

Seronegativity following early anti-biotic treatment therefore does not rule out Lyme borreliosis in any way.

Chronic stage

Lyme borreliosis can lead to numerous symptoms. The following are particularly frequent:

• fatigue (exhaustion, a chronic feeling of illness)

• encephalopathy (impaired cerebral function)

• muscular and skeletal symptoms

• neurological symptoms (including polyneuropathy)

• gastrointestinal symptoms

• urogenital symptoms

• ocular symptoms

• cutaneous symptoms

• heart diseases.

The success of treatment must be assessed clinically

A negative serological finding does not rule out Lyme borreliosis

There may be a disease requiring treatment even without the detection of antibodies. (Causes: e. g. antibi-otic treatment starting early but inadequate with immunodepressants, including cortisone, exhaustion of the immune system, masking of the causative agents, genetic disposition.)

Co-infections can be transmitted by ticks or by other routes of infection

The scientific basis for antibiotic treatment is still inadequate at the present time, with the exception of the localised early stages (EM). The considerable shortcomings in the scientific-clinical analysis are reflected in therapeutic guidelines, which are severely limited in the reli-ability of their recommendations and in their evidence base in the international litera-ture,(159) and they do not meet the requirements from the medical and health-policy aspects.

Successful antibiotic treatment is possible only if the individual has an effective immune sys-tem. With regard to antibiotic treatment, problems also arise with Borrelia due to natural or acquired resistance. The causative agent of Lyme borreliosis can evade the immune system by what are known as “escape mechanisms”

ANTIBIOTICS FOR PATIENTS WITH ME/CFS?

2011-07-14T00:42:00.000-07:00

RETROSPECTIVE ANALYSIS OF A COHORT OF INTERNATIONALLY CASE DEFINED CHRONIC FATIGUE SYNDROME PATIENTS IN A LYME ENDEMIC AREA

Samuel Shor¹, MD, FACP

ABSTRACT

Background

Chronic fatigue syndrome is a diagnosis of exclusion for which there are no markers. Lyme disease is the most common vector borne illness in the United States for which chronic fatigue is a frequent clinical manifestation. Intervention of patients with Lyme disease with appropriately directed antimicrobials has been associated with improved outcomes.

Methods

An arbitrary date was chosen such that all patients registered in the database of the practice of the PI, which is located in the Lyme endemic area of Northern Virginia area were reviewed. The diagnosis of clinically significant fatigue > 6 months was chosen. Inclusion criteria required fulfilling the International Case Definition for CFS.

Results

Of the total 210 included in the analysis, 209 or 99% were felt to represent a high likelihood of “seronegative Lyme disease.” Initiating various antimicrobial regimen, involved at least a 50% improvement in clinical status in 130 or 62%. Although not achieving the 50% threshold according to the criteria discussed, another 55 patients subjectively identified a beneficial clinical response to antimicrobials, representing a total of 188 or 88% of the total identified as having a high potential for seronegative Lyme disease.

Conclusions

A potentially substantial proportion of patients with what would otherwise be consistent with internationally case defined CFS in a Lyme endemic environment actually have a perpetuation of their symptoms driven by a persistent infection by Borrelia burgdorferi. By treating this cohort with appropriately directed antimicrobials, we have the ability to improve outcomes.

Link to the study here

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Of course here in the UK a growing number of areas are being found to have ticks carrying Lyme Disease so depending on having been infected in just the known Lyme Endemic areas is just not the best way forward. What we need is much more research relevant to the situation in the UK.

Meanwhile anyone with ME/CFS symptoms should at least consider the possibility that it could be Lyme Disease, not everyone is aware of the sometimes poppy seed sized tick that can infect us and currently research shows that blood tests can miss up to 50% of cases, with about 50% of those infected not seeing a typical Bulls eye rash.

ENGORGED TICK

2011-07-04T14:14:00.000-07:00

Look what I found crawling on my kitchen floor today!

An engorged tick not something you want to find when you have spent years suffering with Lyme Disease and years regaining your health.

I suspect it has dropped off our dog Beth a Springer spaniel and not my husband or myself.

Beth has been struggling with arthritis although she is an elderly lady. As she has often had ticks attached and engorged I suspected her arthritis like mine could be as a result of Lyme Disease although the blood tests were negative but I guess as they do an ELISA only then no surprises there to get a negative result.

I couldn't face another battle with vets for antibiotic treatment

so just in case a few months ago I tried her on Samento. What a difference she bounces around now as she did a few years ago with not much sign of arthritis and no need for anti inflammatories.

So here's hoping that if this tick was attached to her and infected her Samento will take care of any infections.

I will be keeping an eye on myself and husband too.

Just shows you can never be too careful even when you are Lyme aware.

DO YOU HAVE SYMPTOMS OF LYME DISEASE?

2011-06-30T04:36:00.000-07:00

Lyme Disease masquerades as many different illnesses you may have it and not know it.

My symptoms were migrating arthralgias, arthritis, muscle weakness, peripheral neuropathies, but many others suffer cognitive difficulties, depression, confusion, neurological illnesses.

I was diagnosed with Fibromyalgia, ME/CFS, Arthritis, muscle Weakness, musculoskeletal Disease, Polymyalgia Rheumatica before finally after 4 years Lyme Disease. Patients I am in touch with here in the UK have been diagnosed with depression, MS, Parkinson's, Motor Neurons before being diagnosed with Lyme Disease.

Turn the Corner has done and is doing research on our behalf and training doctors so that others can be diagnosed earlier and treated adequately and not have to go through years of hell living with this dreadful disease.

Thank you Turn the Corner, visit their website here

THE TORTURES OF THE DAMNED - AUTISM

2011-06-27T11:22:00.000-07:00

The tortures of the damned

Blog The Age of Autism just published an excellent article that should be read by every parent or parent to be infact by everyone as we all have a responsibility to learn what is going on.

The simple idea -- on September 18, 2010, Joan Campbell posted the following note to parents of autistic children: "I am compiling a list of children who were adversely affected by any vaccine. Please if you could say in about 4-6 sentences what that vaccine was, how they reacted, how they are today and what city the vaccine was administered."
To date, more than 900 responses have been received. The cumulative effect is simply devastating.
Over the past few months, as we all know, the medical establishment and the mainstream media have taken to calling the concern that vaccines can and do cause autism "discredited" -- a "myth" based on fraudulent science, Internet rumors, hysterical parents looking for something, anything -- someone, anyone -- to blame. These reports tell a very different story -- children vaccinated in good faith, on time and in full by caring parents who then watch, often within hours, the physical and mental collapse of their beloved baby.
in this case, the plural of anecdote is the truth. The truth that we're talking about is much more than autism here -- everything from sudden death to seizures, acute allergies to horrible gut problems, arthritis to ADD.

Now click here to read on and also here to read the growing list of parents experiences of their children following vaccination.

What has this to do with Lyme disease you may well ask or even ME/CFS well if you have followed this blog you will see from earlier posts that some children with Autism also suffer with Lyme disease and can improve on appropriate treatments and there are posts about parents with ME/CFS whose children suffer from Autism. Using the search box on the right you will find earlier posts related to Autism.

Please share this.

LYME DISEASE AND MENTAL HEALTH

2011-06-26T14:44:00.000-07:00

Borreliosis (Lyme Disease) and its known involvement in Mental Health
by Denise Longman

Borreliosis (Lyme Disease) and its known involvement in Mental Health

Scientists and physicians across the world have discovered that the growing numbers of people with mental illness and diseases of the nervous system are being cured or improved by treatment with antibiotics. In other words, it is now known that bacteria can make you mentally ill as well as physically ill!

From Croatia to California, from Sweden to Sicily, conditions such as Schizophrenia and Multiple Sclerosis, even Alzheimer's disease and Stroke, are being found to have common to all one of the most insidiously infective bacteria on the planet, namely Borrelia.

This organism is similar to the bacterium that causes Syphilis, which was once the major cause of mental ill health before the days of penicillin. Both bacteria are large and spiral in shape, but Borrelia is turning out to be far worse than its cousin. Syphilis could be detected fairly easily and then killed with antibiotics, but Borrelia is harder to find, and then it is even more difficult to eradicate. Because it causes such a wide range of symptoms, from mild 'flu-like fever to a rapid onset of psychosis, or from strange rashes to sudden heart-block, this nasty bacterium has spread without most of us realising it, around the world, in what is now being called a pandemic.

Perhaps its most miserable victims are those with hallucinations, panic disorders, manic depressive illness and ADHD, as well as those with the labels of Chronic Fatigue Syndrome and Myalgic Encephalomyelitis; for although the latter two conditions are recognised to be of a bacterial / viral cause by the World Health Organisation, the British medical establishment employees predominantly psychological intervention alone. Imagine being confined to a secure mental hospital, or treated with powerful antipsychotic drugs, or living for decades struggling to maintain normal memory and behaviour patterns, when all along there has been an infection secretly living in your brain and nerves. This bacterium may sometimes be the cause of anorexia, while in some of its victims it has been known to cause episodes of uncontrollable rage.

Other bacteria and viruses can wreak similar havoc: some of the ones that live harmlessly in our throats and on our skin are also able to invade our brains. Doctors and scientists are quite ready to acknowledge and search for things like HIV, Streptococcus and Herpes. But it is only recently that they are becoming aware that the Borrelia bug, one of the hardest to positively identify because of its so-called "stealth " behaviour, must be high on the list for diagnosis.

European countries such as Austria, Germany, Holland and France, have alerted their GPs and specialists to the growing problem of Borrelia. Germany has twice polled every doctor in the country to determine the probable infection rate, and has found that it has doubled in the last 10 years. The Dutch have carried out similar surveys. In Austria, every GP's waiting room has warning signs about Borreliosis. The disease is being spread by ticks that are carried on birds, on wild animals and on pets such as cats and dogs, even on horses. It has been found inside the stomachs of biting flies such as horse flies and cleggs and also in mosquitos and mites.

We present here several medical studies published in recent literature, which link mental illness and brain disease to known Borreliosis infection. There were few to be found that had been carried out in Britain; those quoted here are from the rest of Europe and the United States.

a) In a controlled study undertaken at Columbia University Department of Psychiatry, 20 children were examined following known infection of Borrelia burgdorferi (Bb), and were found to have significantly more psychiatric and cognitive difficulties. Their cognitive abilities were found to be below that of 20 matched healthy control subjects, even taking into account any effects due to anxiety, depression and fatigue during education. The study also discussed the long-term effects of the children’s infection with Borrelia, which had brought about neuropsychiatric disturbances and caused significant psychosocial and academic impairment.

b) An elderly lady treated at the Emperor Franz Josef hospital, Vienna, was initially admitted with suspected Motor Neuron Disease. Testing of fluid from her spinal column indicated the presence of Bb. Following antibiotic treatment, improvement was seen in the patient’s clinical symptoms, and further testing of spinal fluid demonstrated a positive response to the antibiotic treatment. The preliminary diagnosis of amyotrophic lateral sclerosis (ALS) was revised to one of chronic neuroborreliosis, the term given to infection of the central nervous system (CNS) by Bb.

c) A 64-year old woman was admitted to the psychiatric ward of the Sophia Ziekenhuis at Zwolle, in Holland. She was suffering from psychosis, with visual hallucinations, disorientation in time and space, and associative thinking. Psychotropic drugs failed to produce any improvement in her condition and further, neurological, symptoms developed. A lumbar puncture revealed the presence of Borrelia burgdorferi and after treatment with penicillin all of her psychiatric and neurological symptoms were resolved. From the history, which the woman was then able to communicate, it appeared she had been bitten by ticks. Her husband, aged 66, passed through a similar episode of disease

d) In a comparative study carried out at the Prague Psychiatric Center, the blood of 926 psychiatric patients and that of 884 healthy control subjects was screened for four different types of antibodies to Borrelia burgdorferi. Of 499 matched pairs (meaning of similar age and gender but from patient and control group respectively) 166 (33%) of the psychiatric patients and 94 (19%) of the healthy comparison subjects were seropositive in at least one of the four test assays for Bb. This study supports the hypothesis that there is an association between an infection of Borrelia burgdorferi and psychiatric morbidity.

e) It has been well documented in numerous published medical studies of Borrelia’s ability to cause many recognized personality disorders and forms of depression; such as anxiety, depression, confusion, aggressive behaviour, mild to moderate cognitive deficits, fatigue, memory loss, and irritability. As such, the American Psychiatric Associations recommends that specialist doctors and councillors alike should seek to rule out Borreliosis as a possible differential diagnosis before commencing with any form of psychological intervention.

f) At the University of Rostock in Germany, a 42-year old female patient presented with schizophrenia-like symptoms but a complete lack of neurological signs. A brain scan and investigation of the spinal fluid led to the diagnosis of Lyme disease. There was complete relief of symptoms after antimicrobial therapy.

g) In a study of patients at a Boston, MA, hospital, scientists looked at patients with a history of Lyme disease who had been treated with short courses of antibiotics. As well as many physical symptoms, such as musculoskeletal impairment, the Lyme sufferers were found to have highly significant deficits in concentration and memory. Those who had received treatment early in the course of the illness had less long-term impairment.

h) At the Kanazawa University School of Medicine in Japan, a 36-year old woman with severe chronic Encephalomyelopathy was shown to have a very high level of antibodies to Borrelia burgdorferi. She showed severe cerebellar ataxia (walking and balance difficulties due to disease in the cerebellum) and profound mental deterioration. The disease had probably been acquired while she had been in the USA. The autopsy 4 years later showed the presence of spirochaetes throughout the brain and spinal cord, which together with the antibody evidence, demonstrated that the Lyme bacteria had caused this encephalitic form of neuroborreliosis.

i) Dr B. A. Fallon and his team at Columbia University Medical Centre in New York have done extensive studies on both adults and children with Lyme disease. They describe numerous psychiatric and neurological presentations of the disease, and show that it can mimic attention deficit hyperactivity disorder (ADHD), depression and multiple sclerosis. In another study, the same team found panic disorder and mania could be caused by Borrelial infection.

j) Scientists from Vancouver, Canada, and Lausanne, Switzerland, recently looked at post-mortem brain tissue samples from 14 patients who had had Alzheimer’s disease and compared them with 13 controls. All of the Alzheimer’s brains had infection with Borrelia-type organisms, compared to none of the controls. From 3 of the Alzheimer’s cases, they were able to carry out genetic and molecular analyses of these spirochaetes to prove beyond a doubt that they were Borrelia.

k) Following the detailed statistical analysis of all published literature on schizophrenia, (with the criterion that each study had to have detailed histories for at least 3000 patients), Swiss scientist Dr Mark Fritzsche was able to demonstrate that: "globally there is a striking correlation between seasonal and geographical clusters of both Multiple Sclerosis and Schizophrenia with the worldwide distribution of the Lyme bacteria." Yearly birth-excesses of such illnesses were found to mirror, with an intervening nine-month period, both the geographical and seasonal patterns of various types of Ixodes tick. He also went on to further state “In addition to known acute infections, no other disease exhibits equally marked epidemiological clusters by season and locality, nurturing the hope that prevention might ultimately be attainable.”

l) Chronic fatigue syndrome has been found to be associated with infection by Borrelia. A study by the Department of Neurology at the University Hospital of Saarland in Homburg, Germany, investigated blood samples from 1,156 healthy young males, without knowing which ones were suffering from CFS. They saw a significant number with CFS sufferers who had Borrelia antibodies even though there were no other signs of borreliosis symptoms. They state that antibiotic therapy should be considered in patients with Chronic Fatigue Syndrome who show positive Borrelia serology.

m) Dr R. C. Bransfield in New Jersey, has found a significant number of Lyme patients exhibit aggression. Patients were described with decreased frustration tolerance, irritability, and some episodes of explosive anger which he terms “Lyme rage”. In relatively rare cases, there was uncontrollable rage, decreased empathy, suicidal tendencies, suicide, homicidal tendencies, interpersonal aggressiveness, homicide and predatory aggression.

The World Health Organisation has warned that mental illness appears to be increasing globally, and that depression will soon become the second biggest cause of disease on the planet. In Britain, it is estimated that new-onset psychoses have reached the annual level of 30 per 100,000 of the population. According to recent announcements, although there are at present about 900 consultant psychiatrists employed in the UK, with 400 posts vacant, there are plans to recruit 7,500 new psychiatrists in the next 5 years, a massive 5-fold increase.

The European Committee for Action on Lyme Borreliosis (EUCALB) has published epidemiological studies showing that there is a serious problem with tick-borne Borreliosis in Europe. For example, the UK’s nearest neighbour, Holland, has found 73 cases per 100,000 of the population per year, with an unknown number of missed diagnoses. The published figures for England, Ireland and Wales appear to be nearly 2 orders of magnitude lower than this, with only 0.3 cases per 100,000. Are cases of Lyme disease / Borreliosis not being found in Britain because it is still regarded as a rare disease in this country? Or do we genuinely have the lowest incidence in the world? Diagnosis of borreliosis is difficult, with tests for antibodies to the bacteria being the subject of great controversy at present. If a consultant has to look at a suspected case of the disease and believes it to be rare, and blood tests are unreliable, then the diagnosis will be biased, quite understandably, towards the patient having some other condition.

It is hoped that health professionals at all levels, and in all disciplines, will come to realise that Human Borreliosis is the fastest-growing, most prevalent zoonotic disease in the world, and has been called a modern pandemic by several authors, including epidemiologists, rheumatologists, neurologists and infectious disease experts. There seems to be little awareness in the UK at present about this situation, but we urge that it be recognised sooner rather than later, in the hope that both mental and physical illnesses due to Borrelia are successfully diagnosed and treated.

References

a) A Controlled Study of Cognitive Deficits in Children

with Chronic Lyme disease.
Tager, F.A., Fallon, B.A., Keilp, J., Rissenberg, M., Jones, C.R.,
Liebowitz, M.R.
J Neuropsychiatry Clin. Neurosci. 2001; Fall; 13(4): 500-7.

b) ALS- Like Sequelae in Chronic Neuroborreliosis.

Hansel, Y., Ackerl, M., Stanek, G.
Wien. Med. Wochenschr. 1995; 145(7-8): 186-8.

c) Lyme Psychosis.
van den Bergen, H.A., Smith, J.P., van der Zwan, A.
Ned. Tijdschr. Geneeskd. 1993; 137(41): 2098-100.

d) Higher Prevalence of Antibodies to Borrelia burgdorferi in Psychiatric Patients than in Healthy Subjects.
Hajek, T., Paskova, B., Janovska, D., Bahbouh, R., Hajek, P., Libiger, J., Hoschl, C.
Am. J. Psychiatry 2002; 159(2): 297-301.

e) Highlights of the 2000 Institute on Psychiatric Services
Guardiano, J.J., von Brook, P.
Jan. 2001, 52(1): 37-42.

f) Borrelia burgdorferi Central Nervous System Infection
Presenting as Organic Psychiatric Disorder.
Hess, A., Buchmann, J., Zettel, U.K., et al.
Biol. Psychiatry 1999; 45(6): 795.

g) The Long-term Clinical Outcomes of Lyme disease. A Population-based Retrospective Cohort Study.
Shadick, N.A., Phillips, C.B., Logigian, E.L., Steere, A.C. et al.
Ann. Intern. Med. 1994; 121(8): 560-7.

h) Borrelia burgdorferi Seropositive Chronic Encephalomyelopathy: Lyme Neuroborreliosis? An Autopsied Report.
Kobayashi, K., Mizukoshi, C., Aoki, T., Muramori, F.et al.
Dement. Geriatr. Cogn. Disord. 1997; 8(6): 384-90.

i) (1) Late Stage Neuropsychiatric Lyme Borreliosis.
Fallon, B.A., Schwartzburg, M., Bransfield, R., Zimmerman, B. et al.
Psychosomatics 1995; 36(3): 295-300
(2) Functional Brain Imaging and Neuropsychological Testing in Lyme Disease.
Fallon, B.A., Das, S., Plutchok, J.J., Tager, F. et al.
Clin. Infect. Dis. 1997; Suppl.1: 557-63.

j) Borrelia burgdorferi Persists in the Brain in Chronic Lyme
Neuroborreliosis and may be associated with Alzheimer disease.
Miklossy, J., Khalili, K., Gern, L., Ericson, R.L., et al.
J. Alzheimer’s Dis. 2004; 6(6): 639-649.

k) (1) Chronic Lyme Borreliosis at the root of Multiple Sclerosis - is a cure with
Antibiotics attainable?
Fritzsche, M.
Med Hypotheses 2005; 64(3): 438-48.
(2) Geographical and Seasonal Correlation of Multiple Sclerosis to Sporadic
Schizophrenia.
Fritzsche, M.
Int. J. Health Geog. 2002; 1: 5.

l) Chronic Fatigue Syndrome in Patients with Lyme Borreliosis.
Treib, J., Grauer, M.T., Haas, A., Langenbach, J. et al.
Eur. Neurol. 2000; 43(2): 107-9.

m) Aggression & Lyme disease.
Bransfield, R.C.
14th International Scientific Conference on Lyme Disease and other Tick-borne Disorders. April 22-23, 2001, Hartford, Connecticut.

THE SUBVERSION OF MODERN MEDICINE THROUGH THE PROLIFERATION OF TREATMENT GUIDELINES

2011-06-16T08:08:00.000-07:00

The Subversion of Modern Medicine Through the Proliferation of Treatment Guidelines

Jerry Leonard

Presented at the Physicians Round Table 2011

Jerry has given permission for me to post on my blog, of course I can not post the whole presentation due to it's size so there is a link here

This helps us to understand the politics and denial of what is happening with illnesses especially the controversy about Lyme disease and pages 287 to the end deal specifically with Lyme Disease.

There is so much more of interest in this presentation, those patients with ME/CFS, Fibromyalgia, who have seen the power struggles going on determined to deny XMRV even without replication studies will also find this interesting as will many other fields of medicine particularly Autism.

Many thanks to Jerry for sharing this presentation which must have been the culmination of many hours of work.

THE LYME PATIENTS DEFENCE GROUP

2011-06-12T07:51:00.000-07:00

FOR ATTENTION OF UK LYME DISEASE PATIENTS
Please share.

Dear Lyme patient

The lyme patients defence group is a group of people with lyme, who have had difficult or negative experiences of the advice from the Southampton reference lab, and its impact on their diagnosis and treatment for tick-borne infections.

We seek other people ( irrespective of who, or how, diagnosed ), who have also had a bad experience. Carers are welcome to contact us if patients are too sick to do so.

It is a group supported by a member of the House of Lords, who has recently taken action in support of lyme patients. At present it is a self-organised group that is independant of all clinics, doctors and lyme charities. Further action is planned.

All people wishing to join this group, will be confidential. No personal information on participants will be circulated, and names and identity will not be divulged either. Information about the group will not be posted online, for ethical and other reasons.

If you want to help in these efforts, please contact the co-ordinator. I will need to talk to you about your experience as a patient.

katrina - katarinita@btinternet.com 12th June 2011

Sorry I have just edited the above e mail hope it now works ok may have to copy and paste.

MISTS AND MYTHS SWIRL AROUND INVERNESS

2011-06-10T14:10:00.000-07:00

Letter to the ME/CFS/FM community in response to comments under the heading "Lyme disease - let’s dispel the myths", by Dr D. Ho-Yen, October 2006 ME Essential, published by the ME Association, UK.

Mists and Myths swirl around Inverness
By Annie Drummond

Scotland is a land of mists, mountains, and malicious ticks. Sorry Scotland, I love your beautiful country and your hospitable, friendly people, but it is where I was bitten by a tick which gave me Lyme disease (also known as borreliosis.)
Several researchers have found that many patients diagnosed with myalgic encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM) (1,2,3) and Multiple Sclerosis (4,5,6,7) have borreliosis, as do a certain proportion of psychiatric patients (8,9,10).

Scotland has its very own Lyme diagnostic laboratory at Raigmore Hospital in Inverness, while the rest of the British Isles relies on one reference laboratory at Southampton in England. At Raigmore, Dr D. Ho-Yen is the chief microbiologist and has been interested in ME for many years. In fact, he published the first "How to treat ME" book in 1985. He maintains that only a small minority of ME/CFS patients could have Lyme disease as the cause of their illness (11). But is he right?

Lyme disease was brought to worldwide attention in 1975, but its history goes back further (12). However, Ho-Yen in 2006 still feels that he must call Lyme an "emerging disease". Perhaps the pandemic levels (13) that have now been reached have allowed the illness to "emerge" from the cloak of silence that has covered the spread of the disease in the UK. Yet as far back as 1989, i.e. over 17 years ago, the World Health Organisation was aware that the whole of the British Isles, plus Scandinavia, Germany, Austria, half of France, California, areas South of the Great Lakes, and other areas, were endemic for Lyme disease (14).

Ho-Yen has recently admitted that his laboratory missed 33% of Lyme cases (15). He retested old serum samples for the year 2003 to 2004, using different methods of interpretation, and found that previous negative tests were becoming equivocal or strongly positive. One is left to speculate how many suspected victims over the last 30 years have been retested, if any, using these new criteria, and how many patients have been recalled for further investigation. It is admirable that Ho-Yen has published these results, but they sit uncomfortably with his latest pronouncements on the ME/Lyme question.

The ME charities, Action for ME, the ME Association and the TYMES Trust, have relied on Ho-Yen to inform the ME community on the relationship between Lyme and ME in the October and November 2006 issues of their recent magazines. Many scientists and commentators, while not disputing his personal findings and his integrity, would wish to respond to some of the statements he has made in these articles.

There are 6 so-called "myths" that Ho-Yen identifies as current in the Lyme world; each one will be discussed in the light of knowledge available. A very different picture from the one he paints will emerge.

Myth 1: The Internet has the best information on Lyme disease. Verdict: True. This is not a myth. The Internet is the source of millions of archived peer-reviewed scientific reports. We all use the Internet; most of us would be lost without it. The data is more accessible and available to be used more readily; researchers no longer have to physically retrieve dusty documents from medical or university libraries.

To be fair there is a lot of rubbish on the World Wide Web, but it is the easiest place to look for the very latest research. Ho-Yen suggests that it is almost impossible to discern the rubbish from the good material, and at first it can be difficult. However, a recent peer-reviewed paper from 2005, authored by several of the most experienced doctors and scientists working in the Lyme field (16), gives a very useful overview of the data available on the Internet and how this relates to their clinical experience.

Myth 2: Doctors are ignorant of Lyme disease.
Verdict: True. This is not a myth and is definitely true in Britain. Please ask your GPs, whether rural or urban [(Richmond Park, as well as other London parks, has been found to harbour Lyme-carrying ticks (17)] if they have heard of Lyme, or of borreliosis, or of the latest infection rates being reported in Europe?

Most doctors, and members of the public too, think of it as an American disease, (that is, if they have heard of it at all!). But the increasing number of cases across Europe is a cause of concern. For example, in Holland (18), the incidence of the "bull’s eye" rash, Erythema Migrans, (EM), which is pathognomic for Lyme disease, was estimated at 39 per hundred thousand in 1994, which doubled to 74 per 100,000 in 2001, and tripled to 103 per 100,000 in 2005. In southern Sweden (19), the mean annual incidence rate in 2005 was 464 cases of EM per 100,000 inhabitants. The incidence was significantly higher in women than in men, 505 and 423 cases per 100,000 respectively.

These are epidemic rates of infection. Britain’s approximate incidence figures, quoted from the Health Protection Agency (20) are no greater than 1.1 per 100,000. It is difficult to rationalise figures that are 2 orders of magnitude lower than those in Holland for example. The island status of the UK will not have protected it from migratory birds, which are well-documented carriers of Lyme-infected ticks (21,22,23,24). It is also not necessarily true that rural doctors are aware of Lyme disease. There have been several cases in my own rural area of the so-called "well recognised" EM rash being labelled as ringworm and others have been told that they were suffering from shingles or allergies. How many GPs will recognise the condition Acrodermatitis Chronica Atrophicans (25), which is a skin disease associated with Lyme?

Ho-Yen has stated himself that the number of cases in Scotland
is underestimated by as much as a factor of 1 in 10. The point is
• if Lyme is continually labelled as one of "those obscure foreign diseases" doctors will not even bother to test for it. The head of the UK’s Lyme reference lab continues to inform the medical world that the disease is rare in Britain (26) and that positive tests are to be ignored in non-endemic areas.
With the exception of Scotland, Lyme is yet to be made a notifiable disease in Britain. Currently the Health Protection Agency (HPA) website (20) gives the estimated incidence as 1000 to 2000 additional cases per year. This is to be added to the figure for the lab reports for the year, which was 585 cases in England and Wales. The true incidence is unknown.
If the laboratories testing for Lyme are not aware of the many reasons for negative antibody tests in the presence of the disease, and do not inform consultants that the patient could still have Lyme, despite the serology being negative, then the situation is perpetuated.

Myth 3: Most ME is Lyme disease.
Verdict: Open. But it is likely to be true for a high proportion of ME/CFS/FM cases, and not a myth at all, according to many Lyme specialists (27,28,29). Most open-minded people agree that not all cases of ME/CFS/FM would be due to Lyme but there are now thousands of people with these conditions who are finding out that they have Lyme borreliosis or other tick-borne infections.
Recent research in the UK points to the fact that biochemical and immunological markers are very similar in Lyme and ME. In a presentation to the Edinburgh ME group in September 2005, Professor John Gow of Glasgow University stated that gene expression regulation in those with ME is identical to that seen in Lyme patients.

In contrast to Ho-Yen’s assertion that the EM rash of Lyme is an easily recognised indicator, half of those bitten do not show the rash and those that do may have atypical presentations (30,31). Seventy percent of Lyme patients who responded to a poll by the Internet group EuroLyme stated that they were previously diagnosed with ME/CFS. The UK government has stated that Lyme can cause Chronic Fatigue Syndrome, but has not broadcast this statement as an important issue. While there is a heated dispute between specialists who believe that Lyme infection is easily cured by a short course of antibiotics and those who say it persists, nevertheless, both sides agree that the "post Lyme syndrome" often presents as fibromyalgia and chronic fatigue syndrome. However, many studies have shown that there is persisting infection, and that this is treatable (32,33,34,35).

Late Lyme is also hard to distinguish from many other diseases, and is more often under-diagnosed than over -diagnosed (36,37,38,39). Most importantly, although Ho-Yen has listed cardiac, joint and skin manifestations of Lyme, he has omitted to mention the devastating neurological symptoms manifest both in ME/CFS/FM and Lyme (40), unless he is implying that the term "fatigue state" encompasses all of the central and peripheral nervous system deficits that may occur in neuroborreliosis, (e.g. encephalopathy, facial paralysis, vertigo, light and sound sensitivity, tinnitus, meningitis). Ho-Yen fails to state the source of his belief that only 10% of late Lyme patients show this "fatigue state". Most people with late Lyme are crippled by a "fatigue state", as are most people with ME/CFS/FM.

Ho-Yen contends that only 5% of Scottish ME patients studied by him had Lyme. However, he does not state which criteria were used for diagnosing Lyme (as mentioned earlier, blood tests cannot be relied upon to rule out Lyme.) Neither does he mention the length of time of follow up of these patients, despite the fact that Lyme, like ME, is known to be a relapsing-remitting disease (41).

Myth 4: Antibiotics can cure Lyme disease.
Verdict: True. This is not a myth. Antibiotics and other drugs in combination or in series can cure many cases of Lyme disease. The treatment needs to be under the supervision of an experienced Lyme specialist and sometimes must be carried out for months or even years.
According to Ho-Yen "the very need for such prolonged treatment with antibiotics suggests that the success rate is not good". Applying his criteria we would refuse to treat TB patients and leave them to their misery. The longer that Lyme disease remains untreated or under-treated, the worse the potential for permanent damage. In some cases, antibiotics may merely lessen the progress of the disease. However Lyme patients across the world who can access appropriate medical care may recover their health or at least have partial remission. (42).

Ho-Yen states "Indeed, it is difficult to separate the natural improvement that occurs with chronic disease from the effects of antibiotic treatment". His solution is to treat ME/CFS as if it were a viral illness, but this is not appropriate knowing the bacterial causation of Lyme. Viruses and bacteria are quite different biologically, needing completely different treatment approaches.

Myth 5: All laboratories produce dependable results. Verdict: False. This is perhaps the only myth on which we have a point of agreement: if all laboratory tests were reliable, Ho-Yen would not have published his 2005 paper, saying that his lab had had to reinterpret a third of its own tests.
Two comprehensive reviews of the accuracy of standard tests for Lyme, in Europe (43) and the US (44), showed that the same sample of blood could test positive or negative depending on which lab it was sent to, or even if tested again in the same lab. Worse still for those with suspected Borrelia infections, the Polish National Institute of Health has reported that patients with low or negative antibody levels have tested positive using other more sensitive techniques. Specific DNA capture and culturing showed that there were live bacteria in their body fluids (45) indicating that those with negative blood tests could be even more ill than those who have circulating antibodies. The problem of co-infections with other organisms is another complicating factor.

In 2003 Dr Lowes, head of microbiology at Southampton, where the Lyme reference laboratory is housed, promised that an internal audit would be conducted into the lab’s operations. He made that promise following complaints that inaccurate testing and interpretation procedures were being carried out at the Lyme lab. The results of that audit have never been made public to this day.

We agree with Ho-Yen that commercial motives could compromise the quality of lab diagnostics. However, nowhere is this more reflected than in the vested interests of the Lyme committee of the Infectious Disease Society of America (IDSA), which as mentioned below, is currently the subject of an anti trust investigation by the Attorney General in Connecticut, where there is one of the highest rates of Lyme infection in the world.

Dr Susan O’Connell, the head of the UK’S Lyme Reference Laboratory, was a consultant to that committee, and both she and the Department of Health promote its viewpoint as a model for diagnostic and treatment policy in this country. Ho-Yen’s recent article demonstrated that he too has adopted much of that view.

Myth 6: There is misleading expert comment
Verdict: True. This is definitely not a myth. As alluded to earlier, in November 2006, Connecticut Attorney General Richard Blumenthal ordered a Civil Investigative Demand under the anti-trust laws concerning the recently published guidelines produced by the Lyme committee of the IDSA. This group of 14 scientists have been the most vociferous in stating that Lyme disease is never chronic and that treatment, beyond a few weeks of antibiotics, is not indicated. (46).

In a press interview (47) Blumenthal voiced his fear that the guidelines were being used by the powerful US insurance industry to deny health coverage to Lyme patients. In addition to the close ties with the insurance industry held by some members of the committee, a number of them have significant conflicts of interest due to their involvement with companies producing Lyme vaccines or test-kits.

Two of the members, Gary Wormser, lead author of the guidelines, and Allen Steere, admit to receiving money from the multi-national Baxter corporation, which is currently developing a vaccine for the European market. A restrictive approach to Lyme diagnosis serves the interests of vaccine manufacturers as it can cover vaccine failure. It is also difficult to conduct clinical testing of vaccines without using antibody tests to rule out the disease. However, all the evidence indicates that the tests are not sensitive enough to be used in this way. The end losers are the patients.
Clinicians associated with the International Lyme and Associated Diseases Society (ILADS) oppose the IDSA, and treat thousands of patients in the US and across the world with long-term antibiotics if necessary (48).

How many Infectious Disease experts in the UK know about the many reasons (49) why both chronic and early Lyme disease can show no antibodies in blood tests (seronegative)? Why does the Health Protection Agency’s Lyme Reference Laboratory inform doctors that a negative ELISA test rules out Lyme in all but the earliest stages, when there is documented evidence (50) that this is not the case?

Conclusion
A combination of the facts above, and the lack of openness surrounding the topic of Lyme borreliosis, has left many thousands of Lyme patients undiagnosed and untreated.

There are many people who suffer for long periods of time, decades in some cases, who have never been tested for Lyme or who have had negative tests. Years later, they find that the antibodies can be seen in their blood or that other more precise tests reveal the DNA of borrelia in their bodies.

A Lyme diagnosis means virtually nothing here in Britain since there are very few doctors who know how to proceed. The persistence of borrelia infections (51,52) means that antibiotic therapy must be extended in order to reduce the bacteria to a low enough level for the immune system to take over.

There is also the problem of co infections, with growing evidence that many Lyme patients may be infected with anaplasma, babesia, bartonella and mycoplasma species (53,54,55,56).

If the patient has been ill for years, thousands of generations of bacteria will have multiplied and spread throughout the body. They may then lie dormant until the immune system is challenged by other events - perhaps by toxicological insult from organophosphates and other poisonous chemicals in the environment, or by catastrophic life events such as automobile accidents etc.

In other patients, the bacteria may rampage continuously and may cause ME/CFS/FM, heart disease, arthritis, MS, ALS, thyroid disease, and visual defects. They may endure pain and vertigo and brain fog, arthralgia and arthritis, endocrine problems, endometriosis, irritable bowel and bladder disease, skin rashes, rapid heart beats, heart failure, hearing loss, seizures, temporary or permanent paralysis, muscle spasms, tendonitis, memory loss and panic attacks. There is even some evidence to suggest that borrelia infection may lead to bipolar disorder, schizophrenia and Alzheimer’s disease (6, 57,58).

On and on the list goes, making many doctors certain that it is an impossible mixture of symptoms to have and therefore must be all in the patient’s mind. Victims of Lyme disease, like those with ME/CFS/FM, have consequently been called over-emotional yuppies with personality problems, stressed-out under-achievers, or over-anxious and depressed individuals.

Now Ho-Yen has exacerbated this situation by accusing British Lyme patients of hysteria. Lyme victims are hysterical, and demand antibiotics. They are hysterical, and say they know more than doctors. Worse still, people with ME/CFS/FM are catching the hysteria, and phoning him up in hundreds to ask if they have Lyme.

Patients with ME/CFS/FM are advised to beware of this hysterical label and to remember how the two hundred or so nurses, doctors and patients in the Royal Free Hospital came down with a nasty epidemic of so-called "hysteria" in 1955. Many of them never recovered from the disease, and never recovered from the stigma attached to that label.

Over the last 30 years Lyme patients have received the same sort of treatment as people with ME/CFS/FM, - ridicule, contempt, disbelief, denial of investigations and treatment, and the ignominy of a psychosomatic label.

Unfortunately, over the last 20 years, there has been a concerted effort by a small but very influential group of psychiatrists to inundate both the scientific literature and the ordinary press with tales of "psychosocial" causes of ME/CFS/FM (59).

We are all being confused by myths, according to Ho-Yen, but is it possible that he has himself been myth-taken? His suggestions that "fatigue" is only shown by the minority of Lyme patients; that antibody tests can rule out the disease; and that chronic Lyme responds to palliative rather than antimicrobial therapy, are all unproven. They are especially unhelpful in the present situation.

Now the common sense of decent people and the integrity and honesty of certain doctors and scientists, such as Kenneth Liegner (60), will unearth the truth about the causes of ME/CFS/FM. These may be multiple. However, in every case, patients are entitled to full information about their diagnosis and prognosis.

Ho-Yen concludes with "In the end, it is a matter of what makes you better" and urges patients to take responsibility for their own illness. We contend that ME/CFS/FM patients struggle heroically to cope with their condition and are forced to take responsibility for their illness every day. Patients will never get better until there is clarity (61) over the issues surrounding Lyme, ME/CFS/FM and other chronic infections.

References
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(40.) Shadick, N.A., Phillips, C.B., Logigian, E. L., Steere, A.C. et al. The long-term clinical outcomes of Lyme disease. A population-based retrospective cohort study. Ann Intern Med. 1994; 121: 560 - 7
(41.) Omasits, M., Seiser, A., Brainin, M. Recurrent and relapsing course of borreliosis of the nervous system. Wien Klin Wochenschr. 1990; 102(1): 4 - 12
(42.) The ILADS Working Group: Cameron, D. et al. Evidence-based guidelines for the management of Lyme disease. Expert Rev Anti Infect Ther. 2004; 2(1): S1 - S13
(43.) Hunfeld, K.P., Stanek, G., Straube, E., Hagedorne, H-J., et al. Quality of Lyme serology. Wien Klin Wochenschr. 2002; 114(13-14): 591 - 600
(44.) Bakken, L.L., Callister, S.M., Wand, P.J., Schell, R.F.
Interlaboratory comparison of test results for detection of Lyme
disease by 516 participants in the Wisconsin State Laboratory
of Hygiene/ College of American Pathologists
proficiency-testing program. J Clin Microbiol. 1997; 35:537 – 43
(45.) Tylewska-Wierzbanowska, S., Chmielewski, T. Limitation of serological testing for Lyme borreliosis: Evaluation of ELISA and Western blot in comparison with PCR and culture methods. Wien Klin Wochenschr. 2002; 114(13-14): 601 - 5
(46.) Wormser, G. et al. IDSA Guidelines Clin Infect Dis. 2006; 43: 1089 - 1134
(47.) http://pqasb.pqarchiver.com/courant/access/1164183821.html?dids=1164183821:11641\83821&FMT=ABS&FMTS=ABS:FT&type=current&date=Nov+17%2C+2006&author=ELIZABETH+HAMI\LTON&pub=Hartford+Courant&edition=&startpage=B.1&desc=LYME+DISEASE+GUIDELINES+FO\CUS+OF+ANTITRUST+PROBEArticle by Elizabeth Hamilton. Lyme disease guidelines focus of antitrust probe. Connecticut News November 17th 2006 edition.
(48.) ILADS op cit.
(49.) Harris. N. An understanding of laboratory testing for Lyme disease Journal of Spirochetal and Tick-borne Diseases. 1998;Volume 5, Spring/Summer http://www.igenex.com/labtest.htm
(50.) http://www.lymeinfo.net/medical/LDSeronegativity.pdf
(51.) Lawrence, C., Lipton, R.B., Lowy, F.D., Coyle, P.K.Seronegative chronic relapsing neuroborreliosis. Eur Neurol.1995; 35: 113 - 7
(52.) Bradley, J.F., Johnson, R.C., Goodman, J.L. The persistence of spirochetal nucleic acids in active Lyme arthritis.Ann Intern Med. 1994; 120: 487 - 9
(53.) Krause, P.J., McKay, K., Thompson, C.A. et al. Disease-specific diagnosis of co-infecting tickborne zoonoses: babesiosis, human granulocytic Ehrlichiosis and Lyme disease.Clin Infect Dis. 2002; 34: 1184 - 1191
(54.) Benach, J., Coleman, J.L., Habicht, G.S., Grunwaldt, E.,Giron, J.A. Serological evidence for simultaneous occurrences of Lyme disease and babesiosis. J Infect Dis. 1985; 152(3): 473
(55.) Eskow, E., Rao, R.V., Mordechai, E. Concurrent infection of the central nervous system by Borrelia burgdorferi and Bartonella henselae: evidence for a novel tick-borne disease complex. Arch Neurol. 2001; 58(9): 1357 - 63
(56.) Nasralla, M., Haier, J. Nicolson, G.L. Multiple mycoplasma infections detected in blood of patients with CFS and/or Fibromyalgia. Eur J Clin Microbiol Infect Dis. 1999; 18: 859 - 65
(57.) MacDonald, A.B., Miranda, J.M. Concurrent neocortical borreliosis and Alzheimer’s disease. Hum Pathol. 1987; 18(7): 759 - 61
(58.) Miklossy, J., Khalili, K., Gern, L., Ericson, R.L., Darekar, P.,
Borrelia burgdorferi persists in chronic Lyme neuroborreliosis
and may be associated with Alzheimer disease. J Alzheimers
Dis. 2004; 6(6): 639 – 49
(59.) Document prepared for the Countess of Mar by Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, University of Sunderland UK, in collaboration with members of the ME community. The mental health movement: persecution of patients? A consideration of the role of Professor Simon Wessely and other members of the "Wessely school" in the perception of myalgic encephalomyelitis (ME) in the UK. Background briefing for the House of Commons Select Committee. December 2003.
(60.) Kenneth B. Liegner, M.D., P.C. Remarks before the NYS Assembly Committee, chaired by Richard Gottfried. Albany, 2001, November 27th.
(61.) Stricker, R.B., Lautin, A. The Lyme Wars: time to listen. Expert Opin Investig Drugs 2003; 12(10).

_________________________

Not a lot has changed in how patients are left undiagnosed and undertreated since this was written although there has been considerable research published that supports ILADS views. This is still ignored by our so called experts as they continue to put their personal spin when they publish papers that illustrate their view rather than a comprehensive view of all the research.

NIH RESEARCH ON PERSISTENCE OF LYME DISEASE

2011-06-09T03:38:00.000-07:00

Lyme disease bacteria take cover in lymph nodes, study finds

See UC DAVIS news and info here

Barthold and co authors once again publish research that puts IDSA Cabal of Lyme denialists opinions into serious question. Time they bowed out and let the real science take over.

The bacteria that cause Lyme disease, one of the most important emerging diseases in the United States, appear to hide out in the lymph nodes, triggering a significant immune response, but one that is not strong enough to rout the infection, report researchers at the University of California, Davis.

“Overall, these findings suggest that B. burgdorferi hinder the immune system from generating a response that is fully functional and that can persist and protect after repeat infections,” Baumgarth said. “Thus, the study might explain why people living in endemic areas can be repeatedly infected with these disease-causing spirochetes.”

Lymphoadenopathy during Lyme Borreliosis Is Caused by Spirochete Migration-Induced Specific B Cell Activation

Acute Lyme Disease is one of the most important emerging diseases in the US.

People with acute Lyme disease often develop swollen lymph nodes, or lymphadenopathy, but we do not know why this happens or what effect it has on the course of the disease. We show here that when mice are infected with live Borrelia burgdorferi spirochetes (the bacteria that cause Lyme disease), live spirochetes collect in the lymph nodes. These lymph nodes then swell up and start producing large numbers of antibody-producing cells. Although many of these antibodies can recognize the bacteria, they apparently lack the quality to clear the infection. We hypothesize that by moving into the lymph node, usually a site in which strong immune responses are induced, Borrelia evades the immune response: it goes to the lymph nodes and tricks the immune system into making a very strong but inadequate response. here

This study is only on the acute phase of Lyme Disease but those of us who went on to develop Chronic Lyme Disease know from first hand experience how many Lymph nodes are involved and swollen.

NEW CLINIC- LYME DISEASE, CHRONIC FATIGUE SYNDROME, FIBROMYALGIA

2011-06-07T23:44:00.000-07:00

One very small step in the right direction Chief Medical Officer promises new clinic will look at better diagnostics and treatment in cases of Fibromyalgia, Chronic Fatigue Syndrome and Lyme Disease.

The big question is how they approach this study do they really want to consider all the evidence that supports Chronic Lyme Disease or will they once again look only from the perspective of the IDSA Guidelines view?

SIGNIFICANT GAPS REMAIN IN UNDERSTANDING OF LYME DISEASE

2011-05-10T01:03:00.000-07:00

Nat Cap Lyme do an excellent summary of the Institute of Medicine report on “The Critical Needs and Gaps in Understanding Prevention, Amelioration and Resolution of Lyme and Other Tick-Borne Diseases."

'Significant Gaps Remain In Understanding of Lyme Disease.'

Animal models that explore mechanisms of pathogen persistence following antibiotic treatment. Note acknowledgement of persistence!

A diverse group of scientists and physicians with expertise in tick-borne infections discussed a breadth of scientific topics. Some profound insights shared by several of these presenters include:

“Science is not belief, but the will to find out” (Benjamin J. Luft, M.D.)

“Everyone is studying the early stage of this infection, no one is studying the persistent phase of this infection.” (Stephen Barthold, D.V.M., Ph.D.)

“You do not require an antibody response to develop this disease” (Janis J.Weis, Ph.D.)

“Treat the patient, not the test” (Juan Olano, M.D.)

“[For the child] long-term effects last 50-70 years” (Richard F. Jacobs, M.D.)

“…the poor understanding of the true incidence and geographical distribution…I don’t think we have a clue” (Richard F. Jacobs, M.D.)

“How can you say, ‘I’ve treated you for four weeks and therefore you no longer have Lyme disease.’ The fact is, we don’t know!” (Sam T. Donta, M.D.)

“Under-powered studies which purport to demonstrate universal efficacy need to be viewed with circumspection” (Sam T. Donta, M.D.)

“All that shouting drowns out all the complexity and the nuance and the work that needs to be done” (Pamela Weintraub, senior editor at Discover magazine, and author of Cure Unknown: Inside the Lyme Epidemic)

To read Nat Cap's summary of the report click here

To read Gregg Skall's presentation from an earlier post click here

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I was diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculoskeletal disease and Polymyalgia Rheumatica before my doctors realised that I was actually suffering from Lyme disease.

LOOKING AT LYME DISEASE

UNDULATORY IMMUNE RESPONSE IN EUROPEAN LYME BORRELIOSIS

Course of Antibody Response in Lyme Borreliosis Patients before and after Therapy

Abstract

COUNTESS OF MAR QUESTIONS IN THE HOUSE OF LORDS - LYME DISEASE

LYME DISEASE INCREASING IN THE UK - UNDER THE RADAR

Estimating Lyme disease risk using pet dogs as sentinels.

Estimating Lyme disease risk using pet dogs as sentinels.

Source

Abstract

COMMENT ON THE PERSISTENCE OF BORRELIA BURGDORFERI IN RHESUS MACAQUES FOLLOWING ANTIBIOTC TREATMENT OF DISSEMINATED INFECTION

Re: Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection

Saturday, 21 January 2012, 9:43

IDSA DEPEND ON OUTDATED LYME DISEASE GUIDELINES

LYMEPOLICYWONK: Congressmen Call For Removal of Outdated IDSA Guidelines from National Guideline Clearinghouse

PROOF OF PERSISTENCE - CHRONIC LYME DISEASE

Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection

Abstract

UPDATE OF MY LYME DISEASE

ANGRY

IDSA ASKS WHAT WE WANT? WILL THEY LISTEN?

MULTIPLE SCLEROSIS INFLAMMATION, INFECTION - FOR HOW MANY LYME DISEASE?

CONCERN OVER INCREASING LYME DISEASE IN UK

THERE WAS NO MORE INFLAMMATORY DISEASE WHEN THE BACTERIA WERE ELIMINATED

SYMPTOM GRAPHER

FOUR UK DOCTORS FAILED TO DIAGNOSE SAM STOSUR WITH LYME DISEASE

LYME DISEASE IN THE UK

LYME RESEARCH UK AND IRELAND - RESEARCH

THESE PATIENTS ARE SICK!

Treatment of Chronic Lyme Disease: Fifty-One Case Reports and Essays in ...

IN MEDICINE WE DO NOT HAVE POPES OR FLAWLESS SAGE MENTORS.

ILADS CONFERENCE TORONTO - A SNIPPET BUT SIGNIFICANT NEVERTHELESS

WALK IN THE WOODS

DOCTORS IGNORING SCIENCE

NEOLITHIC MAN HAD LYME DISEASE

SOME PATIENTS WITH ME/CFS RESPOND TO TREATMENT FOR CHRONIC LYME DISEASE

DOCTORS PUTTING TOO MUCH RELIANCE ON NEGATIVE TESTS FOR LYME DISEASE

TWO TESTIMONIES ON CHRONIC LYME DISEASE

INTERPRET SEROLOGIC RESULTS WITH GREAT CAUTION

Source

Abstract

Comment in

Serologic Tests for Lyme Disease Yield Disparate Results

DR BRANSFIELD SPEAKS OUT TO PA LYME DISEASE HEARING

MEDICAL FREEDOM - THE RIGHT FOR DOCTORS TO TREAT CHRONIC LYME DISEASE PATIENTS

ANTISCIENCE OR SCIENCE OR DESPERATION TO DENY LYME DISEASE PATHOGENSIS

Summary

ANXIETY OR PANIC ATTACKS

ALZHEIMER'S DISEASE - A NEUROSPIROCHETOSIS

Alzheimer's disease - a neurospirochetosis. Analysis of the evidence following Koch's and Hill's criteria.

Abstract (provisional)

ONE IN FIFTY EIGHT CHILDREN IN THE UK WITH AUTISM- HOW MANY CAN BE PREVENTED?

CONGRESS ADDRESSES LYME DISEASE ISSUES

ANTIBIOTIC SUSCEPTIBILITY - LYME DISEASE

Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi.

Source

Abstract

BACKGROUND:

METHODS:

RESULTS:

CONCLUSION:

GERMAN GUIDELINES FOR LYME DISEASE - A SLIGHT CHANGE IN DIRECTION.

ANTIBIOTICS FOR PATIENTS WITH ME/CFS?

ENGORGED TICK

DO YOU HAVE SYMPTOMS OF LYME DISEASE?

THE TORTURES OF THE DAMNED - AUTISM

LYME DISEASE AND MENTAL HEALTH

THE SUBVERSION OF MODERN MEDICINE THROUGH THE PROLIFERATION OF TREATMENT GUIDELINES

THE LYME PATIENTS DEFENCE GROUP

MISTS AND MYTHS SWIRL AROUND INVERNESS

NIH RESEARCH ON PERSISTENCE OF LYME DISEASE

NEW CLINIC- LYME DISEASE, CHRONIC FATIGUE SYNDROME, FIBROMYALGIA

SIGNIFICANT GAPS REMAIN IN UNDERSTANDING OF LYME DISEASE