IDSA GUIDELINE AUTHOR ON FAILURE OF LYME DISEASE TESTS

Alan Barbour's patent tells the tale

This one statement is powerful, contradicting the stance that Barbour and the IDSA Lyme Disease Guideline supporters have made for years.

Alan Barbour in one paragraph summarizes strain variation, immune system evasion, persistent infection, failure of Lyme tests and the uniqueness of Borrelia amongst other pathogens.

"This mechanism of genetic switching appears to be different from any other antigenic variation mechanism described in bacteria or protozoa and has important implications in Lyme disease. By combining different regions of the silent vls cassettes, it is possible for many different vlsE serotypes to coexist the same patient. It may be impossible for the host to mount a protective response against any one of these clonal populations, because of the small number of each type. Even mounting a response against one serotype would not protect against rapidly evolving, new serotypes."

Read an excellent report on this patent by Camp Other Blog, helpful for those who are not able to understand the technicalities, at the link here

To access the full patent click here

Another extract:-

[0006] These organisms are closely related and cause similar manifestations with multiple stages: an expanding rash at the site of the tick bite (erythema migrans), fever, lymphadenopathy, fatigue, and malaise; effects of disseminated infection, including carditis, meningoradiculitis, and polyarthritis; and chronic manifestations including arthritis and neurologic disorders. Lyme disease is often difficult to diagnose because of shared manifestations with other disorders, and it can also be refractory to treatment during late stages of the disease."

My Chronic symptoms of Arthritis, Muscle Weakness, Fatigue and peripheral neuropathies turned out to be Lyme Disease and on long term antibiotics have all resolved, how many more patients with similar symptoms as a result of a tick bite could be helped on just simple antibiotics?

I posted earlier on Barbour here

XMRV A WAY AROUND THE POLITICS OF LYME DISEASE AND ME/CFS

So much has been happening I am not sure what to blog about and what to leave out so I will list a few things.

Lannie in the Lyme light reporting back on PART 1: 1/17/11 XMRV presentation by Dr. Judy Mikovits and Annette Whittemore
'In the research she had performed, simply trying to help her daughter, she saw the glaring similarities amongst CFS, Fibromyalgia, Gulf War Syndrome, Autism, Multiple Sclerosis, Parkinsons. These neuro-immune dysfuctions were common in families and in geographical cohorts. They knew they had something very important on their hands, and they’ve been committed to the neuro-immune cause ever since'

PART 2: 1/17/11 XMRV presentation by Dr. Judy Mikovits and Annette Whittemore
As a Chronic Lyme Disease patient, I found it very interesting that much of this conversation seemed to go back to Lyme again and again. During the presentation and the Q&A session. In the presentation they referenced a study where 65 Chronic Lyme Disease patients were tested for XMRV, and 100% came back positive. This was the most reactive group the WPI has seen. That is a higher rate than ME/CFS! I thought Annette Whittemore said it best, “Every time we hear something new about XMRV, we find a similar finding within Lyme. It’s amazing!"

Paula Carnes on Testing Negative staying positive

If you have any of these labels you may find you are XMRV positive: Lyme, MS, Parkinsons, ALS, peripheral neuropathy, autonomic neuropathy, dementia or Gulf War Illness.
http://paulacarnes.wordpress.com/2011/01/20/testing-negative-staying-positive/

XMRV Could Likely Be an emerging zoonotic disease
http://cfidsresearch.blogspot.com/2011/01/xmrv-could-likely-be-emerging-zoonotic.html

Early Events in Retrovirus XMRV Infection of the Wild-Derived Mouse Mus pahari

These data support the use of Mus pahari as a model for XMRV pathogenesis and as a platform for vaccine and drug development against this potential human pathogen.

http://jvi.asm.org/cgi/content/abstract/85/3/1205?ct=ct

I can't quite get my head around this following research. Why such a push for a vaccine when they still can't test properly for what the infections are, seems something dodgy to me, what are they frightened of?


A new approach to a lyme disease vaccine.
Livey I, O'Rourke M, Traweger A, Savidis-Dacho H, Crowe BA, Barrett PN, Yang X, Dunn JJ, Luft BJ.
Baxter Innovations GmbH, Biomedical Research Center, Orth an der Donau, Austria. ian.livey@baxter.com
Abstract
A single recombinant outer surface protein A (OspA) antigen designed to contain protective elements from 2 different OspA serotypes (1 and 2) is able to induce antibody responses that protect mice against infection with either Borrelia burgdorferi sensu stricto (OspA serotype-1) or Borrelia afzelii (OspA serotype-2). Protection against infection with B burgdorferi ss strain ZS7 was demonstrated in a needle-challenge model. Protection against B. afzelii species was shown in a tick-challenge model using feral ticks. In both models, as little as .03 μg of antigen, when administered in a 2-dose immunization schedule with aluminum hydroxide as adjuvant, was sufficient to provide complete protection against the species targeted. This proof of principle study proves that knowledge of protective epitopes can be used for the rational design of effective, genetically modified vaccines requiring fewer OspA antigens and suggests that this approach may facilitate the development of an OspA vaccine for global use.

http://www.ncbi.nlm.nih.gov/pubmed/21217174

Perhaps the most positive take home from all of this was included in Lannie in the Lyme light's second presentation where she quotes Judy Mikovits over the question of politics- Very confidently, and quickly she retorted, “I think the politics will go away shortly.”

A video will shortly be available on the WPI website of their presentations.

MY LYME DISEASE IS NOT THE IDSA LYME DISEASE

My Lyme disease is not the IDSA Lyme disease

In response to various articles in the Chicargo Times and other newspapers found here
a number of patients posted their experiences with the above heading.

Blogger Lymenaide: says this:-

Do a Google search for "My Lyme Disease is not the IDSA Lyme Disease". See what pops up! Keep writing and posting your stories. Let's get the first few search pages to be filled with our stories. Keep the existing stories at the top of the list by reading them, commenting and sharing them with your friends and family.

Below is what I added to my side bar of both my blogs.

LYME LIFE

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks, 4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. I have been retired early from the Civil Service having lost my job not to mention my earning potential.

My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said, but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer at the time I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area.

Thus started my very lengthy search about Lyme Disease leading me through http://www.lymediseaseaction.org.uk/ to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite the Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work.

Life is such a joy.

Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses.

Look at UK charity http://www.lymediseaseaction.org.uk/ if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one.

One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.
ME/CFS, Fibromyalgia, Polymyalgia Rheumatica, Arthritis, Bell’s Palsy, MS,MN, ALS, Parkinson’s, Alzheimer’s, Heart Block, Stroke, Psychiatric, gastric problems the list is endless. Not all suffering from Lyme Borrelia but how many are even properly assessed for it.

Monday, 25 January 2010
ME/CFS, FIBROMYALGIA, LYME DISEASE UPDATE

An update on my journey from ME/CFS, Fibromyalgia, Arthritis and Muscle weakness, Polymyalgia 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 Clarithromycin. I tried many times to reduce the Clarithromycin 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 Clarithromycin 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 Polymyalgia 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.

As of December2010

Sadly after a 5 month break off antibiotics my symptoms deteriorated sufficient for me to once again start antibiotics. Some of these symptoms are those described as Peripheral Neuropathies, facial, tingling and twitching, problems with vision, flashing lights and blurred vision, and tingling and numbness in legs and feet. Thankfully they responded well to antibiotics and whilst remaining on them I remain virtually 100% with only one or two remaining symptoms that have continued to improve month on month.

THE CONSEQUENCES OF IGNORANCE

The first video is just a handful of the many thousands of patients suffering with Lyme Disease throughout the World.

For every patient that knows they are suffering with Lyme Disease there will be many more who are unaware that their symptoms or Arthritis, Muscle weakness, peripheral Neuropathies, gastric problems, psychosis, heart block could be connected to an undiagnosed case of Lyme Disease.

They will have been diagnosed with a variety of illnesses Fibromyalgia, ME/CFS, Arthritis, Poly Myalgia Rheumatica, Parkinson's, Multiple Sclerosis, Motor Neuron's, Alzheimer's, Psychosis, Chronn's disease and the list is endless.

Even if their doctors test for Lyme Disease they will say that a negative test means you don't have Lyme when infact even the makers of those test kits say that a negative test can not rule out Lyme Disease.

The second Video made based on the experiences of a ME/CFS patient is in reality something that most of us with Lyme Disease experience to.

Infact about 30% of us actually get diagnosed with ME/CFS before we finally find a doctor that diagnosis Lyme Disease.

This video should be watched by the doctors and therapists who see us so that they can consider what foolish things they say to patients.

INFECTIVE CAUSE OF NEUROLOGICAL ILLNESS

Multiple Sclerosis, Parkinson's, Motor Neurons, Alzheimer's, Peripheral Neuropathies, twitching, tingling and other Neurological illnesses have all been diagnosed in patients with Borreliosis commonly referred to as Lyme Disease.

Sadly with the controversy which has developed over the last 30 years not all the important information is easily available to our doctors and consultants, so it is necessary to get well informed so that you can best advocate for what is right for you.

It is significant that those doctors and consultants are the first in line consulting the specialist Lyme Doctors following ILADS when they or their family member is thought to have a Borrelia infection, Lyme Disease and the many co infections that often accompany this chronic infection.

“Lyme on the Brain”
Lecture notes Part 2 of 4
by Tom Grier
Microbiologist
August 2010

The heart and soul of the mechanism of infection, or the pathogenesis of Borrelia bacteria that cause Relapsing Fever and Lyme disease is its ability to attach to the lining of blood vessels and cause gaps or holes to appear between the endothelial cells.

The endothelial cells themselves release digestive substances, as well as our own white blood cells releasing blood-born immune factors such as tissue plasminogen, TNF-alpha, IL-1, Il-6, histamines, vaso-active amines and MMP-9 that facilitates cell penetration through any and all blood vessels, but especially important is the immediate transit of Borrelia burgdorferi through the blood-brain-barrier.

Animal models including dogs and primates show conclusively that this is not just a random occurrence, but rather a very specific mechanism that facilitates both the immediate and long-term survival of Borrelia within mammalian systems.

In dog-models, the uninfected dog’s blood protein albumin was tagged with radioactive Iodine, and then traced using radio-detection of entering the brain and spinal-fluid.

After infected ticks were allowed to feed on the dogs, this “leaky-brain-effect” took less than 24-48 hours to reach its full potential.

We can measure and observe this leaky-brain-effect in dogs, hamsters, rabbits, and primates within hours, and we can see and detect in many other animal models including guinea pigs, mice, hamsters, and rabbits the actual transit of Borrelia into the brain of these animals within days of tick-bite, yet our own USA health-care experts are saying without equivocation that infected ticks have to be attached for at least 36-48 hours.

(YALE Medical Report, IDSA-Lyme Treatment Guidelines)

Why is there such an absolute dictatorship in our guidelines when we have direct animal studies since 1989 that suggest that not only does Borrelia bacteria penetrate blood vessels and enter the brain, but once the blood-brain-barrier closes up 10-14 days after initial infection; the sequester bacterial infection within the brain is undetectable by serology tests.

Our current serology tests that detect antibodies to the Lyme bacteria; require at least 4-6 weeks after exposure to produce significant antibodies to the Lyme bacterium.

By then the infection can be resting dormant and quiescently within the host’s brain, undetected, undetectable, and creating changes within the brain that are subtle and perhaps for awhile negligible.

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Consider these other short-comings of the
Current antibody based Lyme serology tests:

1. To create these tests we need a representative source of the wild bacteria as a source for specific antigens that can be used to detect the specific antibodies that patients produce as a result of an infection from their local area.

Since Borrelia bacteria are genetically equipped to change their antigenic appearance (strain variation) it is important to use tests that are designed using the best representation of the bacteria that is found in the local area.

There can be tremendous variation in Borrelia isolates even those found within close proximity to each other.

There are well over 1000 Borrelia isolates of Borrelia burgdorferi that are strain variations in the USA alone.

This is not even counting the greater variation that we see if we look at other related geno-species; such as,

Borrelia lonestarri in Missouri, or Relapsing Fever Borrelia in the SW USA,
or the genospecies Borrelia garinii and Borrelia afzelii found in Europe,
or the dozens of other related bacteria in the world that cause Lyme-like or Relapsing-Fever-Like diseases caused by various variant strains of Borrelia bacteria.

Once you see this global picture you can never look at Lyme as an isolated disease ever again. It is part of a global-pandemic called Borreliosis.

But the tests that have been chosen for us, and dictated that we use are not based on any Borrelia found in nature! Why?

Since Borrelia identity changes quickly by inserting variant plasmid genes into its larger linear chromosome, the bacteria will always have built in variation unless you eliminate plasmids.

(Borrelia burgdorferi has about 31 circular or linear plasmid-chromosomes that facilitate genetic variation,
it is estimated that over 60 genes can insert in at least three different chromosome loci resulting in over sixty to the 3rd power variations in the bacteria
or potentially over 200,000 possible variations that could be predicted based on what we currently know.)

This creates an economic and practical dilemma for manufactures of Lyme serology tests who want consistency and reproducibility without the expense of isolating local bacteria from local ticks and growing them in the lab which is very difficult, time consuming, inconsistent and expensive.

For this reason manufacturers use a strain that was developed in a lab that resists variation.

Strain B-31 that was originally isolated from the NE USA ticks, and was created through high-passage selection until it remained consistent from division to division.

B-31 is never found in nature,

and when B-31 tests were compared and tested by independent researchers in Madison WI, France, Austria, and United Kingdom, B-31 had short comings and never had the essential antibody detection that the tests developed from local wild-strains produced.

One can make an argument for B-31 consistency, but never for its local strain selectivity.

What makes this discussion about what strain we use to make Lyme serology tests completely moot; is the one fact that we completely ignore in the United States:

Once Borrelia bacteria breach the brain’s defenses, absolutely no Lyme serology test short of an autopsy can rule out infection within the human brain!

Here are some other considerations about Lyme test shortcomings:

2. Dr. Lori Bakken, Madison WI tested 516 labs across the USA using Lyme ELISA tests, and found them seriously lacking and only about 50 % accurate in consistency of positive tests.

3. She used triple paired identical blinded samples.

4. This independent test illustrates the fallibility of the Lyme ELISA test yet incredibly the ELISA is demanded by so called experts and medical authorities to be used as one of two screening tests used for the diagnosis of Lyme disease.

(Bakken LL, Callister SM, Wand PJ, Schell RF. Interlaboratory Comparison of Test Results for the Detection of Lyme Disease by 516 Participants in the Wisconsin State Lab of Hygiene/College of American Pathologists Proficiency Testing Progrm. J Clin Microbiol 1997; Vol 35, No 3:537-543
Bakken LL, Case KL, Callister SM et al. Performance of 45 Laboratories participating in a proficiency testing program for Lyme disease serology. JAMA 1992;268:891-895

Now consider the second screening test:

The Western Blot was once a useful tool for diagnosing Lyme disease when used properly, but the National Western Blot Criteria meeting held in Dearborn MI changed this test from somewhat useful to useless and the logic and science behind it is so poor we have to ask ourselves what agenda did the committee of state epidemiologists and concerned patent-owners have?

Yes people and institutions who had conflicts of financial interest had input into the two-tiered system of diagnosis that we currently use.

The nearly arbitrary decision to eliminate species specific antibody-bands from the reporting of the Western Blot tests definitely made the Western-Blot test less accurate.

This change in accuracy did not come about from changing the actual test but rather by enforcing a reporting-bureaucracy that made the test less sensitive.

Make no mistake the labs that do this test still see the positive bands that are banned from reporting, but are legally unable to report them.

Then to further cloud the already muddy waters of accuracy it was decided that all laboratories across the USA have to report all Western Blots as either positive or negative and not report the essential bands.

Not reporting significant Western Blot Band is to a scientist, tantamount to saying: There are no contaminates in your drinking water, so please don’t waste your time testing the well water.
If you do test the waters and find something that we haven’t reported, we have already deemed that the contaminates are unimportant and benign.

Well the contaminates (bands 31, and 34) aren’t as benign as we are told.

Let’s look at the old Western Blot reporting criteria on 66 kids with a tick-bite and bull’s-eye rash compared with the new reporting criteria.

This is the same test and same patients, but we are now using the Dearborn MI “Dressler” criteria for Western Blot reporting.
Western Blot and False Negatives in Children:

1995 Rheumatology Symposia Abstract # 1254 Dr. Paul Fawcett et al.

This abstract showed that under the old criteria, all of 66 pediatric patients with a history of a tick bite and, Bull’s Eye rash who were symptomatic, were accepted as positive under the old Western Blot interpretation.

Under the newly proposed criteria only 20 were now considered positive.

That means 46 children who were all symptomatic, would probably under the previously mention YALE Criteria be denied treatment!

That’s a success rate of only 31%.

66 Children with Bull’s Eye rash Old W. Blot Criteria 100% positive

New NIH Criteria 31% positive

The number of false positives under both criteria was ZERO %.

* Note: A misconception about Western Blots is that they have as many false positives as false negatives. This is not true.
False positives are rare.

The conclusion of the researchers was: “the proposed Western Blot Reporting Criteria are grossly inadequate, because it excluded 69% of the infected children.”

More issues with serology testing in Lyme:

3. The human body starts to make IgM antibody at 4-6 weeks after exposure to the pathogen, and does not make IgG antibodies for many months, yet some “Lyme Experts” want to eliminate IgM Western Blot reporting completely.

4. This would almost certainly mean less early Lyme disease detection because most doctors who use “Two-Tiered” testing protocols will test within the first two months of tick bite and the negative Western Blots will demand that they not treat. (See Yale treatment protocols above)

D) The Lyme bacteria can hide almost immediately within the human body.

Without a large enough number of bacteria (infection load) that remains in the bloodstream for a sufficient time for the immune system to recognize the pathogen, the human immune response will be minimal or absent.

Intracellular localization of Borrelia burgdorferi within human endothelial cells. Ma Y, Sturrock A, Weis JJ. Infect Immun 1991 Feb; 59(2): 671-8. PMID:

Characterization of Borrelia burgdorferi invasion of cultured endothelial cells. Comstock LE, Thomas DD. Microb Pathog 1991 Feb; 10(2): 137-48. PMID:

Penetration of endothelial cell monolayers by Borrelia burgdorferi.
Comstock LE, Thomas DD. Infect Immun 1989 May; 57(5): 1626-8. PMID:

Although the antibody tests would be negative possibly for years, the infection can still be alive and cause problems where it survives such as in the:

joints, heart, inside endothelial cells, and inside the brain and more specifically inside brain neurons and glial cells.

These bacteria cannot be detected with indirect methods like Lyme antibody test including ELISA and Western Blots, nor is it likely that DNA-PCR can detect these infections without heroic efforts to obtain proper sampling that goes far beyond just blood and urine.

Time, money and expediency have forced doctors to use tests that are inadequate for the task of determining the worst possible scenario which is a persistent infection within the brain.

For the simple reason that most patients are not obviously or immediately affected by their neurological infection, the medical system has ignored these ticking time-bomb patients that are seronegative, and symptom free.

But the neuro-lyme patients will pay a severe price for having doctors who refuse to go back and connect all the dots after these patients reappear in their offices with severe disabling symptoms.

Untreated and improperly treated tick bites can lead to patient disasters. Yet the treatment guidelines are so black and white that we have to now ask ourselves:

Are we going to hold the users of these treatment guidelines accountable for their lack of any flexibility?

Patients are not paid to be experts in any disease, but when an entire medical community has limited all the options for sick patients both in diagnosis and treatment, then can we not hold these professionals to the same standards we would expect from a plumber?

If the pipes leak, at least try and understand why?

Here is an example of unrealistic expectations from the medical community.

In Valhalla, New York a temporary Lyme treatment center was created that used the ELISA test to screen patients.

Using this inadequate test it was determined that about 30 % of all walk in patients had Lyme disease.

But here is what one of the coordinators had to say about it:

There is great hysteria about Lyme disease... less than a third of the patients who walked in to our center actually had Lyme disease.

Would we hold the same standards of accurate self-diagnosis to cancer patients, or heart patients?

Do we publicly chastise patients walking into a sexually transmitted disease center and say:

“These people are wasting my time! Only a third of them have VD!!!”

Why then is there a double standard for people who are losing their jobs, their marriages and quality of life who are just seeking answers.

No wonder so many patients turn to alternative treatments. The options for Lyme disease patients to get diagnosed and aggressively treated in America is extremely limited and only getting worse every year!

Now consider this:

Recently a Lyme disease expert stated nationally that there is no evidence of transplacental transfer of active infection from mother to fetus.

We have actually observed in culture Borrelia burgdorferi penetrating umbilical vein.

We also have nine case histories 1987-1989 that confirmed by either culture or direct tissue staining that in fact Borrelia burgdorferi does cross the placenta, and has caused still-births including infections within the fetal brain.

(See work and photo by Dr. Andrew Szycpanski Stony Brook Dept. of Pathology New York of
Borrelia creating holes in umbilical vein.)

If I was a Obstetric Nurse or OB-GYN and told to repeat this factoid that Lyme does not cross the placenta as stated by our guiding experts on Lyme disease concerning pregnant patients, and then to also be forced by clinic administrations, insurance companies and peer pressure to rely on two-tiered testing, and follow published treatment guidelines that ignore our entire encyclopedia of knowledge on spirochetes, I would be worried!

I would be worried that when the next fetal autopsy is done that I would be called to be accountable.

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This is a silver stained image of a Borrelia burgdorferi penetrating a fetal brain neuron at necropsy of a still-born fetus from a mother thought to be at low risk for Lyme disease and seronegative for Lyme antibodies on several Lyme serology tests. Alan MacDonald
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If Lyme disease patients have early undetectable neurological infections that resist current antibiotic treatment regimens, then why haven’t we seen evidence of this?

First of all if you define treatment success by merely saying that the patient’s Lyme tests are now negative after treatment, you will by virtue of incredibly bad science never see treatment failures.

This is because eliminating the infection from the blood is not the same as eliminating it from the heart, brain and joints.

But serologist will fail to detect these areas of sequester infection where the bacteria fails to stimulate antibody production.

Next you have to look at follow-up.

If you do a study that compares doxycycline to IV ceftriaxone and the only symptom is a bull’s-eye rash and your only determination of cure is the absence of rash and a negative ELISA test, and your only follow-up post treatment is two weeks.

You will probably conclude that doxycycline is as effective as IV ceftriaxone, and insurance companies will smile and love you. (See M. Eckman )

Two things have been consistently true in nearly one dozen antibiotic treatment studies:

The longer you treat the fewer relapses you have, and the sooner you treat after tick bite the better, and the longer you follow patients after treatment the higher the relapse rate will be.

We have patients from Nantucket Island that were followed over five years after months of antibiotic treatment and still relapsed and it didn’t matter if intravenous drugs were used.

What was more important was How long you treated and how soon after tick bite you treated.

Overall the relapse rate after 5 years approached 50 %, but to get all the facts you had to go to a Lyme Conference because this final relapse rate was never published and conveniently left out.

How antibiotics work:

In most cases bacterial lethal exposure occurs only during cell division.

For a spirochete like Borrelia that is a slow divider (24 hours under good conditions) to get the same lethal exposure during cell-wall synthesis as say treating strep bacteria, you would have to treat for one year and five months.

Using the old microbiology formulas for tuberculosis from the 1950s, we would expect both TB and Lyme disease to require in many cases over one year of antibiotics including combination therapy.

Well we learned our lesson with Tuberculosis but not yet with Lyme disease.

Relapse or Failure %

Logigian (1990) 37% After 6 months, 10 of 27 patients treated relapsed or failed treatment.

•17 (63%) improved,
•6 (22 percent) improved, then relapsed,
•4 (15%) had no response.”

Pfister (1991) 37%,
33 patients with neuroborreliosis treated.

After a mean of 8.1 months, 10 of 27 were symptomatic and borrelia persisted in the CSF of one patient:

Asch (1994) 28%, 3.2 years after initial treatment:

28% relapsed with major organ involvement;
18% were reinfected.

Persistent symptoms of arthralgia, arthritis, cardiac or neurologic involvement, were present in 114 (53%) patients.”

Shadick (1994) 26%,
10 of the 38 patients …relapsed within 1 year of treatment and had had repeated antibiotic treatment.”

Shadick (1999) >37%,
69 of 184 previously treated patients (37%) reported a previous relapse.

Treib (1998) >50%,
After 4.2 years, more than ½ of 44 treated patients with clinical signs of neuroborreliosis and specific intrathecal antibody production were symptomatic.

Valesova (1996) 38%, At 36 months, 10 of 26 had relapsed or progressed:

complete response or marked improvement in 19, relapse in 6, and new symptoms in 4.

End of Lecture Notes for Lyme on the Brain Part 2 by Tom Grier

***********************************************************************

The above is posted by permission of Tom Grier the author. Tom requested that I make available the supporting references, these total over 100 pages. I can't seem to add links to this post but should anyone wish these references I will e mail them with attachments so contact me, my e mail can be found in my profile in the right hand column of this blog.

Thanks to Madison Area Lyme Support Group for posting here
and thanks to Betty G for contacting me with details on MD Junction here

INFECTION=CHRONIC DISEASE?

Emerging Infectious Determinants of Chronic Diseases


Evidence now confirms that noncommunicable chronic diseases can stem from infectious agents. Furthermore, at least 13 of 39 recently described infectious agents induce chronic syndromes. Identifying the relationships can affect health across populations, creating opportunities to reduce the impact of chronic disease by preventing or treating infection. As the concept is progressively accepted, advances in laboratory technology and epidemiology facilitate the detection of noncultivable, novel, and even recognized microbial origins. A spectrum of diverse pathogens and chronic syndromes emerges, with a range of pathways from exposure to chronic illness or disability. Complex systems of changing human behavioral traits superimposed on human, microbial, and environmental factors often determine risk for exposure and chronic outcome. Yet the strength of causal evidence varies widely, and detecting a microbe does not prove causality. Nevertheless, infectious agents likely determine more cancers, immune-mediated syndromes, neurodevelopmental disorders, and other chronic conditions than currently appreciated.
Infectious agents have emerged as notable determinants, not just complications, of chronic diseases. Not infrequently, infection may simply represent the first misstep along a continuum from health to long-term illness and disability. Preventing or treating infection or the immune response to infection offers a chance to disrupt the continuum, avoiding or minimizing a chronic outcome. To capitalize on these opportunities, clinicians, public health practitioners, and policymakers must recognize that many chronic diseases may indeed have infectious origins.



http://www.cdc.gov/ncidod/eid/vol12no07/06-0037.htm

The above research is of interest to those of us who have had or currently suffer with chronic illness. In my case Arthritis, muscle weakness and Peripheral Neuropathies all improved since being diagnosed with Lyme disease and treated on long term antibiotics. Many patients suffer from Psychosis, brain fog, gastric problems and neurological problems and then find that Lyme disease was the cause.

Diagnosis can be made for Multiple Sclerosis, Parkinson's, Alzheimer's, Motor Neurons , Autism spectrum disorders or like me Fibromyalgia, ME/CFS, Polymyalgia Rheumatica, Musculo skeletal disease. How many patients with these diagnosis are ever properly checked for Lyme Disease or other infections but instead given sympomatic treatments rather than investigating the cause?

A LYME WARRIOR

Dr. Joe Jemsek “Speaks the Truth” Speech

Dr. Joe Jemsek (www.jemsekspecialty.com) discusses the controversy surrounding Lyme disease and what action needs to be taken to provide patients with better care.

Lyme Disease is more generally associated with Arthritis by the general public, that is if they think about it at all. In fact my main symptoms were arthritis and muscle weakness but as my illness progressed I developed various Peripheral Neuropathies. It is interesting to read what Dr Jemsek has to say about the Disease and the Patient.

THE DISEASE
A tick bite can expose a person to a variety of bacteria and other microorganisms that may make one sick. This can occur after a single bite or through multiple tick bites. In this overview, we will focus on the particular bacteria called Borrelia Burgdorferi (Bb) that is known to cause Lyme disease and is acquired from a tick bite. If antibiotics are not taken or are inappropriately administered soon after a bite from a Bb-infected tick, the patient is at higher risk for illness, which may occur suddenly or surface at a later time.
Finding the attached tick is difficult because the tick that carries this bacterium is very small and tick bites may occur where they are not easily seen. Often times, the tell-tale rash that can result from a tick bit, called erythema migrams, does not develop. Hence, a patient may not know they were bitten by an infected tick. They may soon begin to feel symptoms such as fatigue, muscle pain and spasms, sensory aversion, gut and bladder problems, bizarre neurological symptoms and memory loss. It is not unusual for cognitive difficulties to progress to the point that patients experience the inability to find their way home from everyday places, such as the grocery store and post office.

THE PATIENTS
Most patients that come to the Jemsek Specialty Clinic have seen 5 to 15 doctors for the symptoms listed above. They have seen neurologists, psychiatrists, rheumatologists, cardiologists, gastroenterologists, and internal medicine specialists. They have often been treated for one of more of their individual symptoms without knowing the cause of those symptoms. When treatment for their symptoms is stopped, the symptoms typically re-emerge. This is not unusual if one stops taking high blood pressure medicine, the blood pressure usually rises again.

On the matter of the IDSA review

http://www.jemsekspecialty.com/shownews.php?id=30

IDSA Review Panel Results Called Highly Suspect

"There is no justification for relying on flawed science for continuing its recommended guidelines and arming insurance companies to deny health benefits to insured Lyme victims. If the panel was not prepared to recognize the studies that support longer courses of antibiotic treatment for chronic sufferers, it should have included a call for continued scientific study of this topic among its suggestions. It is time for the IDSA doctors to stop defending their reputations and get back to the work of helping sick people to get well."

Although the above video was of 2009 Into The Light Gala I had not started this blog then and it is something I wanted to post about. I remember Dr Jemsek saying 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? Already Lyme disease is a greater epidemic in the USA than HIV.

BBC NEWS LYME DISEASE WARNING

BBC NEWS York & North Yorkshire

Lyme disease threat to walkers on North York Moors

Walkers on the North York Moors are being warned to check their skin carefully after being out on the moors.
Ticks, from deer and sheep, infected with Lyme disease are said to pose a serious risk to health as Peter Lugg found out.

To watch the clip click here

Ticks can be found throughout the UK so it is important to be vigilant. It is easy to miss the sometimes poppy seed sized tick and not everyone gets the bulls eye rash. Not all ticks carry Lyme Disease, Borrelia, but ticks which feed off any small mammal such as rats, mice or birds etc., can carry a multitude of infections most of which are never even tested for. We can't exactly ask the tick if it picked up an infection in it's last feed and if so which infection. By the time we are really sick it is often too late to treat as an early stage infection and if that opportunity is missed then longer courses of treatment are sometimes needed to clear the infection according to the ILADS Guidelines.

It is good to see an increasing awareness in the media but so much more needs to be done. If only I had known 7 years ago that we could catch Lyme Disease in the UK, I had thought it unique to USA. If only the doctors I saw with bites, rashes , summer flu' like no other I had ever experienced, migrating arthralgias, not to mention the doctor I asked if it could be from an insect bite, who firmly said no with the shake of her head, if only they had known.

To think that all that arthritis pain and disability, muscle weakness, dysphargia, fatigue, peripheral neuropathies could have been avoided with more doctor and patient awareness. 6 1/2 years of chronic illness could have been avoided with just a few weeks antibiotics.

Shocking isn't it but what is more shocking is the children who suffer undiagnosed and untreated and they are the most vulnerable.

Thankfully there are a growing number of doctors here in the UK who are realising there is more to this controversy over Lyme treatment than they have been led to believe. Where I live in Guildford there are an increasing number of patients I am getting to know with Chronic Lyme Disease but also an increasing number of patients who are seeking and receiving early medical attention.

For more information look at UK charity website Lyme Disease Action

TICK BITE

I have only just come across this excellent article written in the Telegraph by a vet Peter Wedderburn. It is good to see more awareness in the media here in the UK.


Have you ever been attacked by a tick?

By Pete Wedderburn Health and lifestyle Last updated: May 13th, 2010



short extract

I’ve blogged about Lyme Disease before, and I’ve had lengthy comments from people who’ve suffered from the condition: they have a huge amount of concern about under-diagnosis of this disease, with many patients not being diagnosed, despite classical symptoms, until their body has been too badly damaged for treatment to be fully effective. It seems that in the UK, we’re far too casual about the risk of contact with ticks; in other European countries, there’s a much higher level of awareness of the disease threat.
Well, if you’ve read this blog, you’re that little bit more aware now. Please spread the word.



The full article can be read here



Pete's blog article can be seen here



and his blog link here



The person Pete refers to had a very similar experience to myself, my symptoms were mainly Arthritis, Muscle Weakness and Fatigue but with some Peripheral Neuropathies, Dysphagia being the scarriest symptom all gone now since following ILADS treatment on long term antibiotics.

FDA AND NIH HAVE INDEPENDENTLY CONFIRMED THE LOMBARDI GROUP FINDINGS

There will be many patients suffering with ME/CFS celebrating today after the release of information confirming FDA and NIH have confirmed the findings of the Lombardi group.

Already some patients with Lyme Disease are finding they also have XMRV so it will not just be the ME/CFS patients but also Lyme Disease patients following these developments with great interest.

So many of my symptoms of Arthritis, muscle weakness, swallowing difficulties and Peripheral Neuropathies are found amongst patients with Lyme disease but also with ME/CFS diagnosis. I was diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo skeletal disease, Polymyalgia Rheumatica as my symptoms deteriorated over several years, until finally quite by chance my symptoms improved on a chance course of antibiotics and led my GP to suspect Lyme Disease. I was lucky and have regained my health after many months of antibiotics, others are not so lucky as myself.

'We ( FDA& NIH )have independently confirmed the Lombardi group findings'

Dr. Alter's presentation at the 2010 IPFA/PEI workshop "Surveillance and screening of Blood Borne Pathogens" (A PDF of his presentation):

Page 10 of 30 pasted below

Comments on the Agent Du Jour -XMRV

•The data in the Lombardi, et al Science manuscript are
extremely strong and likely true, despite the controversy.
Not only have they detected gag and envelope XMRV
sequences, but they have infected prostate cell lines and
recovered gamma retrovirus particles and have transmitted
XMRV to rhesus macaques by the IV route and demonstrated
infectivity
•Although blood transmission to humans has not been
proved, it is probable
•The association with CFS is very strong, but causality not
proved
•XMRV and related MLVs are in the donor supply with an early
prevalence estimate of 3%‐7%.
•We (FDA & NIH) have independently confirmed the Lombardi
group findings

The above was discussed on Osler's web by Hilary Johnson details found here

and the original press release here

Original Press Release from the Netherlands: FDA and NIH confirm 'XMRV findings'

Gendringen, NL (MMD Newswire) June 22, 2010 -- The FDA and the NIH have independently confirmed the XMRV findings as published in Science, October last. This confirmation was issued by Dr. Harvey Alter of the NIH during a closed workshop on blood transfusion held on May 26-27 in Zagreb. Two journalists from the Dutch magazine for health professionals, ORTHO, who have been working on XMRV stories for several months, were able to obtain a copy of the Alter lecture.
In the October 8, 2009 issue of Science Express, the Lombardi-Mikovits group at the Whittemore Peterson Institute (WPI), the Cleveland Clinic and the National Cancer Institute (NCI) reported that 67% of 101 chronic fatigue syndrome (CFS) patients tested positive for infection with xenotropic murine retrovirus (XMRV). Only 3.7% of 218 healthy subjects tested were positive for this gammaretrovirus. Since that time, a number of research groups have proved unable to independently confirm these findings.
On Friday last, the AABB released an Association Bulletin recommending that its member blood collectors actively discourage potential donors who have been diagnosed with CFS from donating blood or blood components. This interim measure was proposed by the AABB Interorganizational Task Force on XMRV. This Task Force includes representatives from several government agencies, including the Center for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA) and the National Institutes of Health (NIH).
The fact that the measure was introduced suggests the presence of information not yet published. The ORTHO journalists were able to obtain a pdf document of the lecture given by Harvey Alter at the IPFA/PEI 17th Workshop on 'Surveillance and screening of Blood Borne Pathogens' in Zagreb. The International Plasma Fractionation Association (IPFA) represents the not-for-profit organizations around the world involved in plasma fractionation. The IPFA is based in Amsterdam, the Netherlands.
The highly-experienced Dr. Harvey Alter is Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. "The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy", was one comment on the XMRV findings reported by Alter in Zagreb. "Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings."
ORTHO contacted Dr. Harvey Alter today for a reaction. He did not want to comment, but confirmed that a paper is soon to be published.ORTHO is a Dutch magazine for health professionals focusing on nutrition and dietary supplements. ORTHO has been publishing reports on CFS since 1988. Editor-in-chief: Gert E. Schuitemaker (PhD). Tel: + 31 (0) 315 695211 / + 49 (0) 170 808 9484. E-mail: ortho@orthoeurope.com.