Saturday, 30 January 2010


By keeping a careful diary of our symptoms of illness whether it be ME/CFS, Arthritis, or Neurological it helps us to discuss with our doctors and can highlight patterns in our symptoms.

One of the occurrences with Lyme disease, that is well documented, is the Jarisch Herxheimer reaction.

'Several days after the onset of appropriate antibiotic therapy, symptoms often flare due to lysis of the spirochetes with release of increased amount of antigenic material and possibly bacterial toxins. This is referred to as a Jarisch Herxheimer-like reaction. Because it takes 48 to 72 hours of therapy to initiate bacterial killing, the Herxheimer reaction is therefore delayed. This is unlike syphilis, in which these reactions can occur within

The above is an extract from the Burrascano Guidelines there is also a link from my sidebar into these Guidelines.

In an earlier post I mentioned that it was an improvement in my Arthritis and Muscle weakness symptoms that led to my diagnosis, but it is important to realise that that improvement can be followed by Herxheimer reactions as mentioned above and can also fall into a cycling pattern. Many patients reactions, if extreme can be thought to be an allergy to the medication, so this is something to research and carefully discuss with doctors.

For those with ME/CFS, Arthritis or Neurological illnesses it is important to be aware of the above patterns when treated with antibiotics, who knows like me it could be an indication of an underlying infectious origin such as Lyme Disease.

Thursday, 28 January 2010


It is sad to read in the news about Lynn Gilderdale's diary, but sadder still to know that so many people suffer oblivious to what has caused their suffering.

One of my aims with this blog is to get the message out that many patients like myself could have an underlying infectious cause to their ME/CFS . The news about XMRV retrovirus is amazing and of significance but in my case like many more my ME/CFS was found to be Lyme Disease and on long term antibiotics I have recovered 100%.

I am so disappointed that our Health Protection Agency does not do more to raise awareness of Lyme Disease in the UK. In a recent article written by Dr Sue O'Connell and published last year she says:- Prevention measures focus on tick and disease awareness, avoidance of tick-infested areas where possible, use of insect repellents, frequent skin inspections for attached ticks, particularly at the end of the day, as early removal minimizes the risk of infection transmission. Yet when my MP Anne Milton wrote to the Health Secretary asking about raising awareness, the reply was that the HPA had updated their website with information.

What we need is public awareness especially in areas where we walk but other than a very few areas there is hardly any public awareness.

If we do not know we can catch Lyme disease in the UK from a tick bite why in blazes would we even think to look at HPA website. Not even our doctors are properly aware, even when presented with tick bites, bulls eye rashes, summer flu' and migrating arthralgias.

I thought the following interesting it was quoted in the Sperling research article which I posted about recently but which also came up on the Calda blog http://www.lymedise lymepolicywonk/ 327.html

http://www.publiche althjrnl. com/article/ S0033-3506(03)00067-2/ abstractVolume 117, Issue 4, Pages 264-273 (July 2003)

Lyme disease—what is the cost for Scotland?A.W.L. Jossa, M.M. Davidsona, D.O. Ho-Yena, A. Ludbrookb Received 28 January 2002; received in revised form 29 August 2002; accepted 9 September 2002.

Abstract This paper analyses likely Lyme disease costs incurred by patients tested in the authors' laboratory over an 18 month period, based on patient histories and test results relating to 2110 samples submitted from laboratories serving 59% of the Scottish population. Cost analysis takes account of the direct costs of consultation, laboratory tests, antibiotic treatment and management of any sequelae, as well as indirect costs of the loss of healthy time through illness. Standard costs for each element are derived from published information, and the proportions applied to each patient category are estimated from studies described elsewhere in the literature. Of the sample, 295 patients had evidence of early Lyme disease and 31 had late Lyme disease symptoms. Based on these figures, the total annual cost for Lyme disease, when projected to the whole of Scotland, is estimated to be significant at £331,000 (range £47,000–615,000). The range is inevitably wide because it was not possible to document complete clinical and management histories on individual patients. In addition, some late Lyme disease sequelae will require management for more than 1 year, and costs are also identified that could justifiably be included for all the other patients who tested negative for Lyme disease. These data raise the question of whether there is sufficient focus on prevention and the best management of this disease.

Tuesday, 26 January 2010


Dr. Sam Shor, MD, FACP is an internist in Reston, VA had a practice with a focus on the treatment of Chronic Fatigue Syndrome (CFS). His journey later introduced him to the significant overlap between CFS and chronic Lyme disease and he began to think outside the box, way outside the box in the eyes of many.

Dr. Shor realize that he was likely dealing with a phenomenon that was "minimally similar to if not actually responsible for“ what he had been characterizing as Chronic Fatigue Syndrome. He further believed that the difficulty in testing for, and making a diagnosis of, Lyme disease perpetuated the problem of characterizing CFS.

One of Dr. Shor's patients was a 42 year-old lawyer that had carried the diagnosis of CFS and was on disability and out of work for over two years. The patient was intent on going back to work but had fatigue, cognitive impairment, and difficulty sleeping along with many other symptoms. He fulfilled the international case definition of CFS but after exploring his case with newfound insight, Dr. Shor felt that he actually had Lyme disease.
Dr. Shor put together an ILADS-approved protocol and started treatment. Recognizing that treatment is a process that takes time, over the next 12-15 months, the patient improved so much that he is today back at work full-time. Dr. Shor notes that the process was a gradual one and that those patients with chronic Lyme disease generally do not improve overnight. Using the questionnaire that Dr. Shor had created, clear evidence of patient improvement was seen every 4-8 weeks at his regular visits and overall sense of well-being improved. Today, the patient is off all antibiotics and continues to work full-time with an herbal protocol.

A second patient was a 16 year-old high school student that had been home-schooled because she could no longer tolerate the normal rigors of a student schedule. Initially, she was diagnosed with CFS and Fibromyalgia, but she also fit the paradigm for chronic Lyme disease. Dr. Shor started treating the patient with antibiotics and within three months, she was back to school full-time. In fact, she felt so well that she stopped the antibiotics but she quickly got worse and her symptoms score significantly raised. She was put back on antimicrobials and within three months, she was again back to a state of good health.

The experiences that Dr. Shor was having with his own patients were supportive evidence that what he was doing and what was being recommended by ILADS was in fact "valid and appropriate". Dr. Shor recognized, however, that publishing case reports would not be enough to convince the larger medical community of his findings. He knew that there had to be a more randomized, controlled approach to studying the matter further.

Questions and answers.

What percentage of the previously diagnosed CFS patients that you see may actually be dealing with chronic Lyme disease?

Confidently, 50% or more of my CFS patients may have Lyme disease as the underlying cause of their illness.

What is your preferred treatment for Borrelia?

In my study, I am using Omnicef and Biaxin. This was a combination that Dan Cameron, MD had used in a paper to show statistically significant improvement in chronic Lyme disease. I find this combination to be high on my list, though it depends on a number of different issues. I consider whether or not a particular co-infection may need to be addressed. For example, if the patient has Ehrlichia, then I lean more towards Doxycycline.

Which co-infection would you say causes your patients most severe symptoms?

Either Babesia or Bartonella. Both can be very profound. Profound neuropathic pain is identified with Bartonella. Profound fatigue, profuse sweating, and headaches are indications of Babesia. In terms of difficulty in treating, Bartonella is more difficult. Babesia usually responds to treatment with a macrolide, Mepron, and artemisinin. It may require high doses and require treatment for protracted periods of times. Babesia is easier to track as the majority of people have some sweating and this is an easy symptom to track in patients and adjust treatment. Following Bartonella is more difficult.

The above are extracts from :-
From IDSA to ILADS: A Journey Toward Reconciliation
by Scott Forsgren

Monday, 25 January 2010


An update on my journey from ME/CFS, Fibromyalgia, Arthritis and Muscle weakness, Poly Myalgia Rheumatica, to Lyme Disease and a cure for my illness which started in 2003.

I have details of my story on the right hand column on my blog and decided it was time to post an update.

I originally started Joanne's Cottage Garden as a record of my garden, I was able to enjoy gardening once again after an illness of 6 years. Those who followed that blog will notice my mention of my ongoing Lyme Disease symptoms, mainly in my legs.

A few months ago I started Looking at Lyme Disease blog in order to post information that interested me.

Over the last year my symptoms have continued to improve. My scariest symptom was swallowing problems which improved on Doxycycline but returned on Amoxycillin and improved again on a combination of Amoxycillin and Clarythromycin. I tried many times to reduce the Clarythromycin and always my arthritis and muscle weakness would deteriorate but by week three the worst symptom, the swallowing problems were the ones that would push me back into taking Clarythromycin again.

In November 2009 I stopped antibiotics. I still had some symptoms in knees, feet and facial tingling and twitching, I was never sure what was just muscle problems and what was peripheral neuropathies. My GP had discussed the Chief Medical Officers letter with me (details of this on Lyme Disease Action website). I had mistakenly thought she was going to refuse any further prescriptions and so decided to stop antibiotics whilst still having some in hand for emergency (Lyme patients would understand this, others not familiar with the problems getting treatment may not).

It is now week 13 since stopping antibiotics. So far my symptoms have deteriorated, weeks 4, 8 and 12 being the worst and symptoms picking up in between. Symptoms have appeared in a variable way in calf muscles, knees, wrists, feet, face and rt hip. So far I am delighted that my immune system seems to be coping and within a few days of any new symptom appearing, my immune system seems to get on top of it. This is what we are aiming for the immune system in control.

I did see my LLMD and he confirmed I still had Lyme like symptoms and at some point more or less definitely would need antibiotics again, but not just now. He advised me that many of the USA Lyme doctors would treat more aggressively and for longer. This I know, many would treat with cyst busting drugs, we discussed this and decided not to do so at present. The reason for my cycling symptoms is thought to be the dormant infection (which goes into cysts) replicating usually on a 4 weekly cycle.

So at present I am not as well as I was when last on antibiotics, fatigue being another of my problems but not the chronic fatigue that doesn't improve with rest. I am delighted not to be popping pills and delighted that generally my health is still improving so fingers crossed.

Discussing my situation with my GP she is as always very supportive and if the time comes when I need further treatment I am fortunate to have both my doctors there to support me.

I have to say that I have been very very lucky, so many Lyme Patients are far sicker than I ever have been even though there was a time three years ago when I did not want my life to go on because of the endless unremitting pain. It has been a very long and difficult recovery nearly three years of antibiotics, I suspect the 20 months of steroids given for the Poly Myalgia Rheumatica Diagnosis would have compromised my immune system and made my recovery more protracted.

For now it is a joy to be pain free and no longer on any medication.

Sunday, 24 January 2010


Sam Donta a ME/CFS doctor realised the similarity of the symptoms in his patients with those of patients with Lyme disease. Now he treats ME/CFS and Lyme Disease patients and has presented on the subject on a number of occasions.

This list below was at one of his presentations found as a pdf through Google. This program won't allow the columns to space but it is still possible to see the many likenesses.

Chronic Lyme and Lyme-like Illnesses
Symptom Lyme CFS Fibro GWI
Mood Changes++++
Sore Throat++?+
Lymph Nodes++?+
Sleep Disorder++++
Abd pain/Diarrhea+??+
Urinary Frequency+???
Weight Gain++?+

DIAGNOSIS - The diagnosis rests heavily on the clinical symptomatology. When there are clinical signs, e.g. rash, aseptic meningitis, optic neuritis, arthritis, an appropriate differential diagnosis must be pursued. On a clinical basis, "chronic fatigue syndrome" or "fibromyalgia" cannot be readily distinguished from chronic Lyme Disease. Indeed, accumulating experience suggests that Lyme Disease may be a frequent cause of fibromyalgia or chronic fatigue (8,12). Other microbes have been proposed as causative agents of multisymptom disorders that are being termed chronic fatigue and fibromyalgia, especially more recently recognized mycoplasma species such as M.fermentans and M.genitalium, but definitive proof of cause and effect has not yet been established (6, 23).

Dr. Sam Donta: The Interface of Chronic Lyme Disease, CFS and FM
by Bonnie Gorman RN
found at

Questions and answers
Q: If the Lyme lab tests are inadequate and the symptoms are the same as CFS and FM, why not just treat all CFS and FM patients with the Lyme protocol?
A: You want to be conservative with your medicines. I think we have enough info now to tell CFS and FM patients to consider going on a 3-6 month trial of antibiotics and see if you're better. Consider all the other meds you are already taking that just treat symptoms and not the cause of your illness. They all have side-effects that can be hazardous. Is it worth it to you to consider a primary treatment aimed at a cause? There will be resistance from some MDs. They need to be educated. Your primary MD will need to consult an LD specialist re the treatment protocol.
Q: Do patients with Lyme disease also have bowel and bladder problems like interstitial cystitis (IS) and irritable bowel syndrome (IBS)? How are they affected by treatment?
A: Yes, many patients with Lyme have IS and IBS. He was surprised how much the bowel disorders affected treatment. Tetracycline generally helps the IBS. Plaquenil can sometimes irritate the bowel.
Q: I have received different results for the Western blot Lyme test. Why?
A: Lyme test results are not reproducible from one lab to the next. You will get different findings from different labs. The Western blot is not a great test for Lyme since the responses to Lyme bacteria are already very small responses.
Q: I've been sick for 15 years with CFS and my Lyme test was negative. Is there any value in treating now?
A: If the test was negative but you have the complex of symptoms and there is no other obvious answer, why not give antibiotics a try?


Patients with Chronic Lyme disease as with many patients with ME/CFS have symptom flares.

With Lyme Disease or Borreliosis, a subject often talked about is symptoms flare ups and herxing (which happens during use of antibiotics) . A few of us however get symptom flares even when we're not on antibiotics - just what is going on?

Marie Kroun, MD Founder and webmaster of LymeRICK did her own study based on patients symptoms charts of those she was treating and therefore able to follow closely. A summary of her observations are below:"It soon became apparent to me that the pattern of symptom fluctuations is the very best clinical indicator of ACTIVE Borrelia infection, i.e. that active Borreliosis fluctuate in two patterns:
1. very active Borrelia infection, i.e. when the new growth is not under control by either the hosts immune-system or by antibiotic treatment => weekly flares at 8-10 (6-14) days or
2. flares come at monthly (3-5 weeks) interval, which indicate that new growth is suppressed / under control either spontaneously by the hosts immune system or by antibiotic treatment.

The observed patterns are very consistent with Brorsons observation, that young "cysts" of Borrelia burgdorferi will revert back to spirochete form in about 9 days, while older "cysts" will take about 4 weeks to revert into spirochete form again!

The weekly symptom relapse pattern is also consistent with old knowledge about fluctuations in "relapsing fever Borreliosis" , so it seems that Lyme borreliosis is not very different from relapsing fever Borreliosis, clinically!

That Borreliosis symptoms fluctuate over time with monthly relapses is not a new observation either. Indeed, the monthly Borrelia relapse pattern during antibiotic treatment, was described by Dr. Burrascano already in the early 1990ies; he also found that monthly flares may continue for more than a year despite continuing the antibiotic treatment, and this finding was also confirmed by my study!"http://lymerick. net/newsite/ viewpage. php?page_ id=3

For those who are statistically minded there's a brillaint study on flares following a Lyme patient during treatment for over a year which tested the theory of Burrascano on the monthly flare. The link is:Lyme Disease: Statistical Evaluation of a Symptom Log and an Empirical Theory of Flare Cycles http://www.lymenet. de/symptoms/ cycles/statistic s.htm

Saturday, 23 January 2010


Many patients who have been diagnosed with ME/CFS will empathise with this list below. These are remarks made by doctors and consultants who stick rigidly to the IDSA 2006 discredited Guidelines.

These excuses are so pathetic you will probably be bored reading them and wonder how doctors who we have spent vast sums of money and so long educating them could possibly come out with so much rubbish.

a.) People in the community (advocacy groups, media publicity,sympathetic physicians and prominent individuals in society) are able to convince patients they are still sick when they really aren’t(functional somatic syndrome);
b.) Stress can be the cause of remaining physical symptoms after being bitten by ticks;
c.) Secondary gain (patient has hidden motive for wanting to remain ill);
d.) Prior undiagnosed psychiatric disorders (some from as far back as childhood) that don’t appear in individuals until after they have a tickbite;
e.) Even while living in endemic areas, having a tick bite, EM rash, positive lab work and showing improvement on antibiotic therapy- many of the IDSA supporters claim, without examining patients, that they never actually had Lyme disease in the first place so they can’t possibly have chronic Lyme disease;
f.) They feel patients experience improvement due to the placebo effect, so those with continuing symptoms are just easily influenced into believing they are still sick when they aren’t;
g.) If tests don’t support the IDSA’s position, they are being labeled as producing too many false-positives by the IDSA and therefore, theLyme symptoms remaining must be discounted because the lab tests are inaccurate and the patient can’t have Lyme disease;
h.) Patients that are well-documented, even those house-bound or in the hospital, must have had another tick bite at some point that is causing the continuing symptoms;
i.) A pre-infection emotional state that was never detected or diagnosed is suddenly discovered after getting Lyme disease;
j.) The “no one else had these symptoms before you did, so you can’t have Lyme” theory;
k.) IDSA feels other doctors are not as versed as they happen to be and are part of the problem because they are telling patients they have Lyme disease and they treat them for it when they don’t actually have it;
l.) Patients often decide on their own they have chronic Lyme disease because they don’t like the stigma attached to having unexplained chronic symptoms after having a tick bite and contracting Lyme disease;
m.) There is not enough research being done on how to explain to patients that they aren’t suffering from Lyme (when they really are) and more research ($$) is needed by the IDSA so they can figure out how to explain that to patients so they believe what they are being told;
n.) Patients have symptoms but they aren’t the same symptoms the IDSA authors have listed in their Guidelines, so it can’t be Lyme disease;
o.) You are a female or you are getting older and the symptoms you have just became noticeable to you since you got Lyme disease;
p.) Your symptoms aren’t bad enough to be Lyme disease, or the opposite,the symptoms are too severe to be Lyme disease;
q.) People in the general population can have those symptoms, so they can’t be Lyme related;
r.) Doctors treating children in endemic areas don’t know the difference between mosquito bites and tick bites and falsely label patients who are experiencing Lyme symptoms with having Lyme;
s.) Anxiety about the illness, derived from reading information on the Internet, causes patients to remain ill and think they have chronic Lyme disease;
t.) The authoritative “you are not sick because I said so” theory;
u.) Patients develop an unexplained personality disorder, or fibromyalgia, or depression, but only after having a bite from a tick infected with Lyme disease, so it is a coincidence and is unrelated.

In my case a Professor of Rheumatology at a top London Hospital wrote to my GP, she had referred me to him as he had been recommended by the HPA as someone taking an interest in Lyme Disease. In his letter to my GP he wrote that I was someone suffering from 'Lyme Neurosis due to her reading around the subject. Her condition is chronic fatigue syndrome.' He had found signs of arthritis in hip shoulders and bursitis. Having found these signs during examination he asked me, what I had done to sprain my wrists. DUUR! I was there saying that I had these symptoms in all my major joints and had done so for several years.

What was his recommendation
1. wean herself off antibiotics
2. Consider Amitriptyline or Dothiepin therapy.
3. Consider cognititive behaviour therapy.

How must my GP have felt when she read his letter, in view of the fact that it was her not me who had suspected Lyme Disease and I had responded to the antibiotics used to treat Lyme Disease. Thankfully she did not accept his diagnosis or his recommendation. I have to add that depression had never been one of my symptoms throughout my illness although I have since learnt that it can be a symptom that Lyme patients suffer with. As to CBT well I think those chronically sick learn far better coping strategies than any therapist can dream up.

So where am I now. Well many months of antibiotics have returned me to nearly full health better than for many years. I have no arthritis or muscle weakness. I still have a few Lyme like symptoms that cycle four weekly but my immune system is coping for now. Most importantly I am not currently on antibiotics.

My LLMD was amused by the Lyme Neurosis diagnosis clearly the Professor had invented a new illness.

What else you might say, well at the time of my consultation I did not have access to a computer so was not able to read information on the internet as he had suggested to me during my appointment, but since going on line I have made up for lost time. I will happily accept I now have 'Lyme Neurosis' but no pain, what a pity that the Professor hasn't got Lyme Neurosis too, he might learn something of the successes of his medical colleagues who do take time to properly research this illness.

Sadly how many more patients have been through this Professors hands and been denied treatment that could help them, some I have since met through the internet and they like me are recovering. What a pity these consultants don't get to see the outcome of their mistakes whilst we the patients can be left to suffer the consequences.

Does this all sound familiar to people with ME/CFS especially now in the light of the discovery of this new XMRV retrovirus.

Friday, 22 January 2010


Neurological symptoms are many and varied and can be diagnosed as many different illnesses, ME/CFS, MS, MN, ALS, Parkinson's, Autism and Alzheimer's. Some chronically sick patients of each of these illnesses have later been diagnosed with Lyme Disease or Lyme Borreliosis or Neuroborreliosis. That is not to say that everyone with these symptoms has Lyme Disease, but with the state of the controversy how many patients are properly assessed for Lyme Disease.

Dr. Daniel Cameron, (Past)President of ILADS (International Association of Lyme and Associated Diseases), describes neurological symptoms, the severity of the disease and its long term effects. Also covered is the difficulty of treatment, prevention recommendations and co-infections. The high costs to society are also discussed.

The presentation was made at a Lyme disease seminar on October 6, 2009 in the Candlewood Inn, Brookfield, CT. It was hosted by the Rotary Club and the Lyme Disease Task Forces of Brookfield, Newtown and Ridgefield, CT.

UK charity Lyme Disease Action has much useful information on Lyme Disease.

On their website from their Leaflet Lyme Borreliosis in Neurology and Psychiatry:-

Information on Involvement of the Human Brain and Central Nervous System
As more becomes known about the possible long-term effects of neurological Lyme disease, also known as Lyme borreliosis, it becomes imperative that both the general public and medical professionals are made more aware of this disease.
The organisms that cause Lyme disease in Europe include at least three species within the bacterial genus Borrelia. These are Borrelia burgdorferi sensu stricto, Borrelia garinii and Borrelia afzelii.
People with this disease may develop an extensive range of symptoms that affect both the body and the mind. In many cases these symptoms are similar to those that may develop in the disease syphilis. This is because these bacterial (spirochaetal) diseases are closely related.

Main symptoms indicating nervous system involvement:
Symptoms of cognitive loss such as:
Memory impairment or loss (‘brain fog’)
Word-finding problems and Dyslexia/ problems dealing with numbers
Visual/spatial processing impairment (losing things, getting lost, disorganisation)
Slowed processing of information
Poor abstract reasoning
Losses in fields of attention/executive functions such as inability to maintain divided or sustained attention
Poor auditory and mental tracking and scanning (loss in ability to follow daily affairs, which is complicated by persistent distractibility)
Neurological symptoms and signs including:
Neuralgia, i.e. nerve pain
Panic attacks
Facial palsy, numbness and tingling, especially of the face
Cranial nerve disturbances such as - Optic neuritis, trouble swallowing, distortions of taste and smell, visual disturbance, certain movement disorders
States that mimic other defined neurological disorders such as Parkinson’s disease or MS
In children, indications of neurological involvement include behaviour changes, learning disabilities, school phobia, hypersensitivities of the skin and headaches.
Some patients have developed Lyme-related:
Psychoses including hallucinations and delusions
Violent behaviour, irritability
Rage attacks/inability to control impulses/out of context crying spells
Anxiety/Panic attacks
Rapid mood swings that may mimic bipolar disorder (mania/depression)
Obsessive-compulsive disorder (OCD)
Sleep Disorders
An Attention deficit/hyperactivity disorder (ADD/ADHD)-like syndrome
Autism-like syndrome
A progressive dementia
Further Sources of Information.
*More information on treatment is available at the website of The International Lyme and Associated Disease Society (ILADS), a professional medical and research society. The document ‘Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne
Illnesses’ by Dr. Joseph Burrascano is recommended.
*The Lyme Disease Research Program at Columbia University, New York has further professional information upon the role of neurology and psychiatry.
Available at
*Dr. Robert Bransfield, a psychiatrist who specialises in infectious causes of neuropsychiatric illness, has developed a structured clinical interview to assess Lyme seronegative patients.


I posted last year about ME/CFS, XMRV .
I will be interested to see how many ME/CFS patients have a cocktail of XMRV retrovirus and Lyme Disease.

The following was copied from The Lyme and Tick- Borne Diseases Research Centre at Columbia University.

'A fascinating and potentially very important study has recently come out in the journal Science. The study reports on the discovery that 68% of patients with Chronic Fatigue Syndrome (CFS) carry the XMRV virus as compared to 3.7% of those without CFS. Further work reported in the New York Times indicates that the virus has been found in 98% of patients with CFS. The discovery of this retrovirus, if confirmed by other research groups, suggests that this virus is either the cause or an important secondary factor in CFS. This finding has implications for Lyme research as it is possible that patients who carry this virus when co-infected with Lyme go on to have persistent symptoms because: a) of activation of the latent virus; b) infection with Lyme or another tick-borne disease lowers the immune surveillance making the individual more susceptible to "catch" the virus; or c) the presence of the virus and the spirochete together act synergistically to induce an array of illness symptoms or to prevent eradication or control of either organism. In any case, given that the symptoms of CFS are so similar to the symptoms of patients with chronic persistent Lyme symptoms, especially shared problems with fatigue and cognition, research in this area may shed important light on the mechanisms underlying the perpetuation of chronic symptoms. In terms of treatment, if this virus is thought to be causal, then retroviral treatments that are used for treating HIV may be very helpful for patients with chronic persistent symptoms.'

Many of you will have seen Laurel's presentation to the CFSAC meeting.

On her blog Dreams at Stake, Laurel says she is co infected with Lyme Disease.
In a later post of Laurel's , she says she has now tested positive for XMRV .

I wish Laurel well and hope now that her doctors know what she is facing they are more able to help her recover.

It will be very interesting to see if other Lyme Disease patients are similarly co infected clearly not all but perhaps some that have not responded well to Lyme Disease treatments. It will also be interesting to see how many ME/CFS patients who do not have XMRV do infact have Lyme Disease and like me respond well to simple antibiotics.

Thursday, 21 January 2010


The following was sent as a comment to my previous post. I have decided to copy into this post because we need to know that there are some amazing success stories once the cause of ME/CFS has been diagnosed and treated correctly.

Many thanks for forwarding this about your daughter and sharing it publicly, we have had many a private chat about your daughter's ongoing good health and her experiences have helped many a ME/CFS sufferer to get themselves properly assessed for Lyme Disease through an expert and get on their road to recovery.


For me this is a sad time. I think of Kay Gilderdale and the hell she is going through. It is hard to know just how many sick young people there are with an ME diagnosis who are just left to rot away.
My child was a young teenager when she was diagnosed with ME. She had already been ill for a number of years by then. She only ever had one lot of blood tests carried out on her right at the beginning of being ill. We were told it was post viral blues.

Once the ME label had been given it became carte blanche for the medical profession to metaphorically shrug its shoulders however ill she became. Somehow it was HER fault that she was ill.

What really struck me was that in spite of the advice from the ME charities that in time with rest she should improve, she in fact deteriorated year on year. I was made to feel responsible for that, because she had pushed too hard and done too much - in fact she had done pretty much sod all.

What child in their right mind would go from being fit and active to lying in bed for days on end. My daughter had lots of friends and hobbies, she was always busy. She had a great time.

She lost all that because she couldn't manage to do anything apart from going to school when she could. She would have done anything to be more normal, but she couldn't do it.

In the few months before we got a proper diagnosis she was far worse. I was pretty convinced she had neurological ME. I used to look at the 25% ME website. On the front of that site there was a young woman - it was Lynn Gilderdale. My teenager looked just like her. Neurological ME frightened me. Seemingly nothing can be done for it. I felt that we were facing a terrible chasm. She was in bed nearly all the time, noise and light sensitive and her swallowing reflex was no longer working properly.

Thank heavens I was told about Lyme Disease and was able to find a doctor who didn't just think, without testing or examining her physically, that it was in her head. She had lots of tests, some very basic, which should have been done by her GP's who didn't care, and these showed how ill she was.

As Joanne says there are doctors out there who are finding that a good proportion of ME patients have an underlying viral or bacterial infection. If these are addressed then improvements are possible. At the very worst the decline in health is very often stopped which in itself is quite something.

Getting well was not easy, but worth every bit of the hard work. She is now fit, well and leading a normal life. Without the diagnosis I dread to think where we would be today.

Again as Joanne says don't just accept that there is nothing to be done, trawl the net and educate yourself. Increasingly this is what people are doing and quite a number of people who had been written off medically are doing much better when they embark on treatment.

Wednesday, 20 January 2010


At this sad time our thoughts are with Kay Gilderdale as she faces her trial, although I suspect this ordeal will be nothing compared with her anguish over the years of helping her sick child. Lynn had been left by the medical profession to fall deeper into the clutches of ME/CFS. There are plenty internet links and newspaper articles discussing the trial, but where was everyone when Kay needed support?

My thoughts also go out to Criona Wilson the mother of Sophia Mirza Sophia died in 2005 after struggling with her ME and the Medical World for many years this must also be a sad time for Criona. Tests done on Sophia's spinal cord found signs of inflammation, although Sophia had been sectioned and treated for a psychiatric illness against her families wishes. Do look at the horrific struggles Sophia and her mother were subjected to, details in the link above.

At the CFSAC meeting in October Dr Bell did a presentation on Factitious disorder and CFS in Adolescents. In all the excitement of the XRMV retro virus I think the significance of Dr Bell's presentation was overlooked.

Anyone who follows this blog will know I was diagnosed with ME/CFS Fibromyalgia, Poly Myalgia Rheumatica, Arthritis and eventually it turned out to be Lyme Disease and on long term antibiotics I got my health and my life back.

During my involvement with Lyme advocacy groups I have met several parents who have had problems with the authorities when the parent has tried to pursue private health care that was different than current main stream doctors would prescribe ie. antibiotics nothing too radical!! I had heard that patients with ME/CFS had had similar problems and so I realise that the presentation Dr Bell made may well be of some use to parents of young children whether it be ME/CFS or Lyme Diagnosis that they are trying to get their child treated for.

Following the CFSAC meeting in October I e mailed Kenneth Friedman this was his reply

'In the United States, two studies indicate that approximately 30 percent of CFS/ME patients actually have Lyme Disease.Getting physicians to re-check their patients is not easy.'

This is a link into my earlier post here

In the UK there is a similar problem not only do doctors rarely consider Lyme disease before diagnosing ME/CFS even though the NICE guidelines specifically say it should be excluded before a diagnosis of ME/CFS but the ME charities are remiss in raising awareness of the problems of mis diagnosis.

To cloud the issue further the blood tests NHS use are considered to miss up to 50% of cases and currently HPA and thus most of the NHS doctors follow IDSA guidelines which are currently being reviewed due to a legal challenge.

However I am in touch with some ME/CFS and Lyme patients that have been helped by private doctors.

As my previous post says Taking Control is so important.

Tuesday, 19 January 2010


Chronic illness is often treated with many misconceptions by other people and doctors.

Interestingly Dr Jemsek said that of the top 20 chronic illnesses in the USA they only know the cause of two Helicobacter Pylori a bacterial infection causing stomach ulcers and HIV a viral infection. How many patients went under the knife for a stomach ulcer unnecessarily and how many AIDS patients died before HIV was accepted?

The remaining illnesses are manged by a barrage of medications the main ones being anti inflammatories, pain killers, anti depressants and steroids all of which are doled out like smarties.

Many people I know, like me were diagnosed with ME/CFS and later found their illness to be Lyme Disease and on adequate treatment of antibiotics get their health and their lives back.

Now with the internet we have the power to investigate our chronic health and help steer our path through the minefield of information available to us and discuss options with the many doctors along the way. The more you read the more you realise that sitting back putting 100% faith in our doctors is not always going to bring us to a successful treatment and many illnesses have so many common symptoms. When do you treat as an auto immune illness and suppress the bodies inflammatory response or when do you dig deeper and find out why the immune system responds with inflammation and actually get to a cause whether viral, bacterial or otherwise?

Through Google alerts I came across this which is a perfect photograph of a Bulls Eye or Erythema Migrans rash and yet Alex Wade had the usual run around with doctors not recognising it. Alex also has had a major operation recently for Cervical Myelopathy, both conditions could be the cause of his many symptoms, although the proximity of the rashes to the Cervical Myelopathy and the fact that Cervical Myelopathy can be caused by infection makes one wonder. Good luck to Alex.

Another case that came up in Google Alerts was Ruth's diagnosis of Lyme Disease after living with a diagnosis of Rheumatoid Arthritis for years. Ruth and I have been in communication because her Arthritis symptoms are so similar to mine although I also suffered from muscle weakness. At one point I was diagnosed with Poly Myalgia Rheumatica and put on steroids (a complete no no for Lyme disease). I had X rays of hands which showed signs of Rheumatoid Arthritis now 100% recovered. I also had scans showing Osteoarthritis in hips and knees which may well still be there, but I no longer have pain or disability there.

Ruth is still in the early days of antibiotic treatment but clearly it is having a significant benefit. Ruth first started being ill at 16, such a waste of her life with so much pain, which could have been managed differently if only doctors would get informed more about Lyme Disease.

Ruth saw mention of the use of Minocycline for treatment of patients with Arthritis on Roadback forum and although I have not had chance to check this website out this is what they say on their homepage.

'You have reached a unique resource. The Road Back Foundation's (RBF) Website includes information and support regarding an important and often overlooked treatment option for rheumatic and related diseases. The particular focus here is antibiotic therapy, proven safe and effective in NIH-sponsored clinical trials. Thousands of patients have reported successfully using antibiotics for conditions including rheumatoid arthritis, scleroderma, juvenile rheumatoid arthritis, lupus, dermatomyositis, ankylosing spondylitis, Lyme disease, Reiter's syndrome, mixed connective tissue disease, fibromyalgia and psoriatic arthritis. Results of an international survey of patients documented dramatic results including relief of pain, the lessening of swollen joints and an overall successful return of quality of life.'

Now I know Doctors will say that we shouldn't believe all we read on the internet but Doctors are human they make mistakes, we are just one of many patients. We only have one body and we need to get as informed as we can about our health and what is available, then we need to discuss with the experts and make our decisions on what works for us. We do not have to listen to just one opinion. Knowledge is power.

Good luck to all those seeking the cause of their chronic ill health.

Monday, 18 January 2010


The University of Montana have produced this explanation of how Biofilms work to explore it properly go to this site here and click on the writing to bring up more detail.

Many thanks to Lorraine Johnson for posting the above on the CALDA website at Lyme Policy Wonk

Biofilms are implicated in Lyme Disease Dr Alan MacDonald and Dr Eva Sapi published on this recently. I listened to a lecture by Klaus Eisendle at the Lyme Disease Action conference in 2008 which discussed biofilms, unfortunately Klaus' excellent presentation is not available on the LDA website.

Friday, 15 January 2010


I was interested to read this research on infection times following tick attachment. We are so frequently told that the tick needs to be attached more than 24hours to pass infection on and yet there are many documented cases where people have been infected in a lesser time frame.

Sadly in reality we are not able to ask if the tick has fed prior to attaching to us and those of us with pets who could and do bring ticks indoors, may be interested in reading this article. So in reality relying on 24 hour attachment is not always sensible, particularly when about 40% of people do not get the tell tale bulls eye rash.

http://www.ncbi. pmc/articles/ PMC266148/

Accelerated transmission of Lyme disease spirochetes by partially fed vector ticks.C M Shih and A SpielmanDepartment of Tropical Public Health, Harvard School of Public Health, Boston, Massachusetts 02115.This article has been cited by other articles in PMC.AbstractTo determine how rapidly Lyme disease spirochetes (Borrelia burgdorferi) can be transmitted by partially fed vector ticks (Ixodes dammini), attached nymphs were removed from their hosts at various intervals post-attachment and subsequently permitted to re-feed to repletion on non infected mice. We confirm previous reports that ticks deposit Lyme disease spirochetes in the skin of their hosts mainly after 2 days of attachment. Those that have been removed from a host within this interval can reattach and commence feeding. Spirochete-infected nymphs that have previously been attached to a host for 1 day become infectious to other hosts within another day. Non infected nymphs acquire infection from spirochete-infected hosts within a day of attachment and become infectious to other hosts 3 to 5 days later. Virtually all ticks transmitted infection when reattaching after first feeding for 2 days. We conclude that partially fed nymphal ticks transmit spirochetal infection more rapidly than do ticks that have never been attached to a host and that infected ticks become infectious before they molt.

Tuesday, 12 January 2010


Everyone with ME/CFS, Fibromyagia, MS, Psychiatric illness, Arthritis, Muscle problems, ALS, Parkinsons, Alzheimer's, Autism should watch this video through to the end. The controversy over Lyme Disease is such that patients are not properly assessed to exclude this illness and those who are diagnosed with Lyme disease are not always adequately treated so that years later their array of symptoms are not often linked back to the tiny tick bite.

Although this video was made in USA and includes Canada, Lyme Disease is also a big problem in Europe and that includes the UK. For more information check out my side bar.
More than 75% members of Eurolyme were previously diagnosed with ME and or CFS, some current members were diagnosed with Motor Neurons and Multiple Sclerosis on long term antibiotics our symptoms improve and we get our health and our lives back.
Blood tests for Lyme disease are only a 50/50 chance of a positive.
Do your own research and check this out.

Monday, 11 January 2010


Once again IDSA have let Lyme Disease patients down. Carol Baker said at the review presentation on July30th 2009 that their decision would be announced at the end of the year but to date no announcement has been made as to their decision.

Patients have struggled with their illnesses years unable to get properly diagnosed and when they do having difficulty to find doctors to adequately treat them. This is not a USA problem it affects the World because most of the World follows these rigid IDSA 2006 guidelines.

Have a look what Under our Skin say in their recent blog

How long must IDSA spin things out while so many patients suffer the investigation time line

should make IDSA members involved with this disgrace hang their heads in shame.

Thankfully I had a GP prepared to treat me on long term antibiotics following Burrascano Guidelines and I am now well and no longer needing any medication. But sadly I am in touch with many patients who are very sick and struggle to get adequate treatment even when they know that treatment improves their symptoms.


Where I live in Guildford Surrey UK I have got to know well over a dozen people who have/are suffering with chronic Lyme Disease. All have NHS and or private testing supporting their diagnosis which is something surprising considering the 50/50 chance of getting positive blood tests.

No doubt there will be many more people who I don't know about and many people who haven't been checked to see if they have Lyme Disease which could be causing their symptoms. My diagnoses were Fibromyalgia, Poly Myalgia Rheumatica, ME/CFS and my symptoms were Chronic Arthritis and Muscle Weakness it took 5 doctors and 3 Rheumatologists 4 years to diagnose me. However symptoms of Lyme Disease can be many and affect every system and organ in the body.

The countryside around Guildford consists of chalk downland and woods, very beautiful but sadly rather over run by deer. To the side of my neighbouring woods the landowner breads Pheasant in Clandon Park. Consequently the surrounding countryside is also awash with pheasants which are also frequent visitors to our gardens.

It was some time ago that I came across research done that showed Pheasants as competent hosts for Borrelia(Lyme Disease).

Competence of Pheasants as Reservoirs for Lyme
Disease Spirochetes

Ticks feed on the blood of just about any bird or mammal and some reptiles too. They pick up Lyme disease and other infections from these animals, e.g. mice, voles, squirrels, blackbirds, pheasants and seabirds, which naturally carry the diseases. Ticks carry more diseases than any other invertebrate host. If an infected tick subsequently bites you, it may transfer one or more of the diseases into your bloodstream.
A tick can be born with the disease that its infected mother tick carries. So, all three stages of the life cycle, larva, nymph and adult, are capable of transmitting disease.

Sadly despite my and my MP Anne Milton's efforts with the Local Authority there is not one public notice or awareness leaflet available to the general public in this locality advising of the risks of contacting Lyme disease and many of my neighbours are oblivious to these risks. Children play in the fields bordering the woods and on the Downs with no protection and I have heard of several cases of tick bite and bulls eye rash where treatment was not offered by doctors.

There is a widespread lack of knowledge and awareness in Britain regarding tick-borne diseases. Many people with typical symptoms will not actually be tested for the presence of even the most common of the diseases. For those who are tested for one or more of the possible diseases, a negative (and thus inconclusive) test will generally result in further investigation being abandoned. Few people will be lucky enough to see a GP with sufficient knowledge to give a clinical diagnosis, i.e. based on symptoms, knowledge of a tick bite event, etc.
For many years, criticism has been aimed at the clinical unreliability of laboratory tests. It is suggested that official statistics for prevalence of tick-borne diseases in Britain are an underestimate of the true picture.
It is likely that the majority of people suffering from tick-borne diseases do not receive treatment at all because they remain undiagnosed or misdiagnosed.

Awareness still remains the best strategy.
You should make it more difficult for a tick to reach your skin by wearing shoes rather than sandals and tuck long trousers into socks.
Ticks can be more easily seen on white or light-coloured clothing.
Avoid a tick's favourite places by walking in the middle of paths and check yourself after sitting on logs or leaning against tree trunks.
Use a light coloured blanket for picnic, it is then easier to check for ticks.
Check your pets for ticks when they come into the house and especially keep them off bedding and soft furnishings. Consider using anti-tick pesticides for pets, consult your veterinary surgeon for advice.
Consider spraying your clothing with an effective anti-tick pesticide. There are a variety in outdoor shops and chemists. Make sure you follow the instructions carefully.

Further information can be found at

Saturday, 9 January 2010


This is the Brorson Brorson Margulis et co article referred to in my earlier post Lyme Disease research held back again

Biological Sciences - Evolution:
Øystein Brorson,
Sverre-Henning Brorson,
John Scythes,
James MacAllister,
Andrew Wier,
and Lynn Margulis
Destruction of spirochete Borrelia burgdorferi round-body propagules (RBs) by the antibiotic TigecyclinePNAS 2009 106:18656-18661; published online before print October 20, 2009, doi:10.1073/pnas.0908236106
...Information Supporting Information Brorson et al. 10.1073/pnas.0908236106 Fig...normal. (TEM; scale bar: 500 nm.) Brorson et al. (TEM; scale bar: 500 nm.) Brorson et al.
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Persistence of tissue spirochetes of Borrelia burgdorferi as helices and round bodies (RBs) explains many erythema-Lyme disease symptoms. Spirochete RBs (reproductive propagules also called coccoid bodies, globular bodies, spherical bodies, granules, cysts, L-forms, sphaeroplasts, or vesicles) are induced by environmental conditions unfavorable for growth. Viable, they grow, move and reversibly convert into motile helices. Reversible pleiomorphy was recorded in at least six spirochete genera (>12 species). Penicillin solution is one unfavorable condition that induces RBs. This antibiotic that inhibits bacterial cell wall synthesis cures neither the second “Great Imitator” (Lyme borreliosis) nor the first: syphilis. Molecular-microscopic techniques, in principle, can detect in animals (insects, ticks, and mammals, including patients) helices and RBs of live spirochetes. Genome sequences of B. burgdorferi and Treponema pallidum spirochetes show absence of >75% of genes in comparison with their free-living relatives. Irreversible integration of spirochetes at behavioral, metabolic, gene product and genetic levels into animal tissue has been documented. Irreversible integration of spirochetes may severely impair immunological response such that they persist undetected in tissue. We report in vitro inhibition and destruction of B. burgdorferi (helices, RBs = “cysts”) by the antibiotic Tigecycline (TG; Wyeth), a glycylcycline protein-synthesis inhibitor (of both 30S and 70S ribosome subunits). Studies of the pleiomorphic life history stages in response to TG of both B. burgdorferi and Treponema pallidum in vivo and in vitro are strongly encouraged.

Biological Sciences - Microbiology:
Anne Gatewood Hoen,
Gabriele Margos,
Stephen J. Bent,
Maria A. Diuk-Wasser,
Alan Barbour,
Klaus Kurtenbach,
and Durland Fish
Phylogeography of Borrelia burgdorferi in the eastern United States reflects multiple independent Lyme disease emergence eventsPNAS 2009 106:15013-15018; published online before print August 14, 2009, doi:10.1073/pnas.0903810106
...States reflects multiple independent Lyme disease emergence events Edited by Barry...mouse reservoirs intervenes in the Lyme disease cycle. Proc Natl Acad Sci USA 101...States reflects multiple independent Lyme disease emergence events. Since its first...
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Since its first description in coastal Connecticut in 1976, both the incidence of Lyme disease and the geographic extent of endemic areas in the US have increased dramatically. The rapid expansion of Lyme disease into its current distribution in the eastern half of the US has been due to the range expansion of the tick vector, Ixodes scapularis, upon which the causative agent, Borrelia burgdorferi is dependent for transmission to humans. In this study, we examined the phylogeographic population structure of B. burgdorferi throughout the range of I. scapularis-borne Lyme disease using multilocus sequence typing based on bacterial housekeeping genes. We show that B. burgdorferi populations from the Northeast and Midwest are genetically distinct, but phylogenetically related. Our findings provide strong evidence of prehistoric population size expansion and east-to-west radiation of descendent clones from founding sequence types in the Northeast. Estimates of the time scale of divergence of northeastern and midwestern populations suggest that B. burgdorferi was present in these regions of North America many thousands of years before European settlements. We conclude that B. burgdorferi populations have recently reemerged independently out of separate relict foci, where they have persisted since precolonial times.


Peer Review or "Cycle of Submission"?
Turmoil at the NAS

"Grants are awarded by your colleagues who sit in Research Councils and Foundations. Most of us, in any establishment, tend to be conservative and to follow what is called the paradigm. This creates a cycle of submission. . . . The disregard for science’s ethical principles is widespread."
– Antonio Lima-de-Faria, Professor of Molecular Cytogenetics, Emeritus, Lund University
Does a science peer review system based on secret submission policies benefit the American public who fund science? A review by this author of correspondence between the prestigious Proceedings of the National Academy of Sciences of the United States of America – the print weekly and online daily research journal (paid subscription) of the National Academy of Sciences – and the authors of several recent scientific papers, most eventually published by PNAS, reveals a nasty back story about submission procedures that in some cases work against the best interests of the public as well as sound science.The uproar had to do with three papers submitted to PNAS several months ago by NAS member Lynn Margulis, a recipient of the US Presidential Medal for Science. One of them, "Destruction of spirochete Borrelia burgdorferi round-body propagules (RBs) by the antibiotic Tigecycline", the authors say involves an excellent candidate antibiotic for possible cure of the tick-borne chronic spirochete infection Lyme Disease in the US, recognized as "erythema migrans" in Europe and elsewhere. However, the paper was held up because PNAS said it had issues about the way Margulis chose her reviewers on the first (unrelated) paper she presented, that is, Donald Williamson’s "Caterpillars evolved from onychophorans by hybridogenesis". As a result, all three papers were stuck. The last of the three, also on spirochetes, which Margulis says was properly and favorably reviewed, has not yet been approved for publication as this story goes to press.Margulis is one of 2,100 US members of the NAS. She does not receive government funding and has further distinguished herself by refusing to take DARPA (Defense Advanced Research Project Agency) money. Margulis admits she is viewed by some within the NAS as "contentious" but says she "only wants to see that real science, open to those who want to participate, is well done, discussed critically without secrecy and properly communicated".NAS promotes itself as a private, non-profit organization of distinguished scientists that serves the "general welfare", although it was actually incorporated in 1863 by Congress during the Lincoln presidency with a mandate to further the investigation of and report on science and art whenever called upon by any department of government. And in 1884, it was authorized "to receive and hold trust funds for the promotion of science, and for other purposes" (emphasis added). NAS is joined at the hip to the National Research Council, National Academy of Engineering and Institute of Medicine – collectively called, the National Academies.When a reporter for Times Higher Education in London asked PNAS why the Margulis-introduced papers were on hold, she was told: "The submission process is confidential and we cannot comment on any papers currently under consideration." In reality, a paper on advice to the editor by anonymous expert reviewers can be pulled at any point on its way to PNAS publication.One of the reviewers Margulis selected for the Williamson paper reported receiving an intimidating call from an editor at Nature magazine and commented, "It sounded like he was trying to discredit the work and that I might have been a weak link."Margulis then learned that one of these anonymous expert PNAS reviewers was blocking publication of the Williamson paper, although she suspected that this was just the tip of the iceberg. She wrote me to say that she was always surprised that they ever had let her into NAS (elected in 1983). She wondered what the qualifications of the anonymous reviewer were and noted that the delay "was cruel . . . when so many people are suffering Lyme arthritis and this Brorson microbiology paper (that I actually co-author) provides a fine clue to eventual adequate treatment. . . ."Margulis who had just returned to her teaching position and lab at the University of Massachusetts-Amherst from Oxford University, where she'd spent the 2008-2009 academic year as Eastman Professor, then advised PNAS managing editor Daniel Salsbury of her course of action:
". . . If [PNAS editor-in-chief] Randy Schekman or you or anyone else at the PNAS continues to pit Williamson’s, Robert Higgins's, Professor Mark McMenamin's, Oxford Professor Martin Brasier's and my authority about marine larval evolutionary history against an anonymous expert reviewer and refuses to be satisfied with my reviewing procedure and therefore to block the entirely unrelated Brorson et al. paper, I am going to be forced to request a signed legal statement that Randy Schekman, you and the anonymous outraged reviewer in fact have more authoritative knowledge than we do about these evolutionary lineages. I humbly request that you do not force me into this position as I am not a litigious person. . . . The PNAS arguments are from authority and procedure and not from science. . . . I insist that Dr. Schekman speak to me directly about the quality of the science, that, in the end, you are trying to protect"
While Margulis won the PNAS battle on both the Williamson and Lyme Disease papers, and one outraged critic came to light in a PNAS-published letter -- Harvard University's Gonzalo Giribet -- questions remain about just what kind of science is promulgated at PNAS. (Giribet told me by phone he was not a "reviewer" on the original Williamson paper but also that he would never admit to being an "anonymous reviewer" if he were an anonymous reviewer.)
Another NAS member (foreign) has been in the process of suing PNAS for the same sort of last-minute expert board member rejection over a paper of his on nitrite in the water supply and cancer victims in China.Harvard scientist Richard Lewontin, considered by many to be the "most important evolutionary biologist of the passing generation," resigned from NAS, describing the Academy as a "political organization which is almost quasi-governmental" and "not about to refuse the DOD and military establishment" (2003 interview with Harry Kreisler of the Institute of International Studies at the University of California, Berkeley). Lewontin left NAS because its operating arm, the National Research Council – funded by federal agencies – had committees that were doing secret war research.We have no way of knowing if anything has changed regarding secret war research. In 2008, US government agency grants and contracts to the National Academies totaled $192.3 million with unspecified funding from private and nonfederal sources at $52.7 million. Some of those federal grants and contracts came from myriad branches of the Defense Department, Office of the Director of National Intelligence, National Security Agency and the Executive Office of the President (George W. Bush).
Suzan Mazur's reports have appeared in the Financial Times, The Economist, Forbes, Newsday, Philadelphia Inquirer, Archaeology, Connoisseur, Omni and others, as well as on PBS, CBC and MBC. She has been a guest on McLaughlin, Charlie Rose and various Fox Television News programs. Email:

Saturday, 2 January 2010


“My twin sister had Lyme disease years ago. She lived in upstate New York and I just remember she was always sort of sick and tired and that she was complaining she couldn’t get help. And I just thought that she was sort of staring to lose her marbles maybe.” That’s how director Andy Abrahams Wilson describes his recollections of his sister’s sufferings, which became the catalyst for his documentary film, Under Our Skin. In making the film, Andy discovered that if the consensus of the medical establishment is to be believed, then his sister more than likely had lost her marbles. After all, Lyme disease, as they say, is hard to contract and easy to treat and chronic Lyme disease symptoms are only experienced psychosomatically. Short-listed for the 2009 Best Documentary Feature Oscar, Under Our Skin chronicles the struggles of multiple Lyme disease sufferers across the country and years as a debate rages in the medical community about what Lyme disease is and how best to treat it – issues that are dictated by highly politicized, private organizations. Wilson spoke to Zoom In Online by phone about the advent of the film, the mind-boggling controversy that has cost hundreds of thousands of people so much money and pain over the years and the hope he has for his film to educate audiences. For more information on Lyme disease and how to take action, visit the official Under Our Skin website.