RELAPSING ILLNESS

Many people with chronic illnesses suffer with relapses, remissions, flare ups - Rheumatoid Arthritis, Multiple Sclerosis, ME/CFS, to name just a few but it is also a recognised pattern in Lyme Disease. 

Ben Luft NIH researcher of many years with the Lyme disease spirochete had something to say on the subject at the Institute of Medicine Workshop on Lyme disease and other tick borne illnesses in 2010 here

But the nature of Lyme disease is it's a relapsing disease.

In 2009 I met a young lady at a Lyme Disease Conference organised by Lyme Disease Action here, she told me of the huge improvements in her health on long term antibiotics.

Recently I was sorry to hear that she had relapsed and once again was struggling to get appropriate treatment from her NHS doctors, even with her history of recovery the first time around. 

An Ecologist/Entomologist/Evolutionary biologist living in Scotland she tells her health story on her new blog here in the hope that it will help raise awareness and help other sufferers of Lyme Disease. 

Her first post is of particular interest because she shows a video of her abnormal or Myopathic gait, symptoms of neurological Lyme disease and I am sure many with Multiple Sclerosis and other Neurological illnesses will identify with this gait - the difference being that with antibiotics this abnormal gait has previously and can again become normal. Link to her first blog post here 

'Toots' as she calls herself goes on to share some Lyme Overview presentations, a good Rant about the denial of this disease and then her latest post about the Four weekly cyclical nature of Lyme disease - I wonder how many patients with Chronic illnesses have documented their symptoms and discovered they too have a four weekly cycle, which is one of the hall marks of Lyme disease.

I look forward to hearing more from Toots on her journey of recovery and wish her all the best, this disease is not for the faint hearted. Our medical authorities marginalize those with Chronic Lyme Disease, without paying due attention to all the emerging science which shows that Chronic Lyme Disease is a very different condition than an Actute case of Lyme Disease.

PROTOMYXZOA RHEUMATICA IMPLICATED IN CHRONIC ILLNESSES

Listen to internet radio with Focus on Health on Blog Talk Radio

1 Step Blood Test Discovers Protozoa under Biofilm Structure

by Focus on Health

in Health

Fri, May 20, 2011 Dr Stephen Fry Interview

Thanks to Better Health Guy for the following  here

Steve Fry MD

• Presented on FL1953 which is now called Protomyxzoa rheumatica.
• Has found Ivermectin, Flagyl, and a low-fat diet to be helpful.
• Studies that have been done on Multiple Sclerosis patients show that patients live longer when on low-fat diets.
• Likes testing from Infectolab from Dr. Armin Schwarzbach for Chlamydia and Mycoplasma.
• Biofilm is an aggregate of microorganisms in which cells adhere to each other or to a surface.  Bacterial biofilms are a structured community of bacterial cells enclosed in a self-produced matrix according to Bill Costerton, a world leader in biofilm research.
• Lipids (fats) play a role in biofilms.
• Biofilms impact teeth, drinking water, paper manufacturing, ship hulls, medical implants, food processing, cooling towers, oil recovery, and much more.
• Iron, calcium, and magnesium all play a role in biofilm formation; be careful about the minerals that you use as these may add to the biofilms.
• There are 1,000 organisms in normal oral flora found in biofilms.
• Biofilms consist of extracellular DNA, proteins, and polysaccharides.
• Biofilms are microbial cells and EPS (extracellular polymeric substances).  EPS may be 50-90% of the biolfilm.
• Microbes are quorum sensing – biofilm communities talk to each other.  Decision making is made by decentralized groups to coordinate behavior.  This is used to coordinate gene expression.
• When microbes come together in a group, it becomes a more complex entity.
• Biofilms play a role in many diseases including ear/nose/throat, dental, respiratory, urology, orthopedic, chronic wounds, medical devices, catheters, chronic inflammation and osteonecrosis.
• Many areas of disease in the body are related to biofilms.  Coronary artery disease, MS, ALS all have association with biofilm communities.
• 46/50 children with otitis media (ear infection) had biofilms.  Chronic rhinosinusitis is a combination of  biofilms and several microbes.
• Biofilm plays a role in cystic fibrosis.
• Nanobacteria can be a cause for kidney stones and generates biofilm.
• In chronic wounds, bacteria is protected from systemic antibiotics and host defenses by biofilms which makes infection difficult to clear.
• Actinomyces, Acinetobacter, Treponema, and others are found in dental biofilms.
• Pseudomonas aeruginosa is a bacteria that is a profound biofilm former.
• Biofilm infections are difficult to eradicate.
• The immune system recognizes the infection, but it cannot eradicate it.
• Items that have been researched in biofilm treatment: Manuka honey, enzymes, multiple antibiotics, bismuth thiols, restricting metals, botanicals, mechanical removal, and EDTA to help chelate magnesium.   Magnesium is a main stabilizing force in biofilms.
• Other substances that are of interest to biofilm researchers include: Lactoferrin, Xylitol, Gallium, Dispersin, Farnesol, RNAIII inhibiting peptide, and Furanone C30.
• Corneal eye disease may be Acanthamoeba infection (protozoan).
• Protomyxzoa rheumatica (FL1953) is an Apicomplexa.
• CCSVI is a very hot topic but is also quite controversial.  One has to suspect biofilm communities.
• Organisms living in biofilm communities are usually not culturable.
• Biofilms are the rule, not exception.  They are ubiquitous.
• Book – "Biofilm Primer" by Bill Costerton.
• There is a Center for Biofilm Engineering at Montana State University - http://www.biofilm.montana.edu/
• Silver is a well known biofilm inhibitor.
• Ozone is used in industry to reduce biofilms.  Not sure if it works in humans, but may break up biofilm communities.
• Fry Labs does microscopy, serology, and molecular diagnostics.
• Protomyxzoa is an inflammatory trigger and vascular pathogen.
• Louis Pasteur believed that all diseases are caused by infections.
• Some autoimmune conditions include Graves, Hashimoto’s, Insulin-Dependent Diabetes Mellitus, Insulin Requiring Diabetes Mellitus, Multiple Sclerosis, Myasthenia Gravis, ALS, Systemic Lupus Erythematosus, Rheumatoid Arthritis, Sjogren's.
• Thomas McPherson Brown suggested that autoimmune disease is infectious in nature; primarily Mycoplasma.  The book “The Arthritis Breakthrough” was written by Brown in 1992.
• Fry has seen Protomyxzoa and biofilm in CFS, Fibromyalgia, Scleroderma, Rheumatoid Arthritis, Lupus, Multiple Sclerosis, ALS, Parkinson’s, Autism, and other conditions.
• In their smear testing, they originally identified Hemobartonella which included Hemoplasma. Today, they suggest that Epierythrocytic bacteria is a better term.  They rarely find actual Bartonella when doing PCR testing but have found cousins.
• Even a single organism can protect itself with biofilm.
• People with parasitic infections are immunocompromised.
• They have found a host of different types of bacteria in biofilms – Ralstonia, Acinetobacter (commonly seen in many patients).
• Protomyxzoa is a slime forming protozoa.  It produces biofilm.
• In ALS, 6 of 6 tested had Protomyxzoa.  5 of 6 tested has Ralstonia which is also a biofilm former.  They see profound biofilm communities.
• When one is infected with Plasmodium as a child, it reduces later incidence of Multiple Sclerosis.  The efficacy of quinine in the treatment of MS supports this connection.
• They are able to culture Protomyxzoa now.  The entire thing becomes like gelatin and they cannot get it off the microtiter plates.
• They have seen filaments as long as 3 or 4 inches in some blood samples.  When sticky stuff is coming out during a blood draw, it may not be a clot, but may be a filament or biofilm.
• In CCSVI, filaments of Protomyxzoa may be involved.  It is a vascular disease and may lead to inflammation of the vessel or vasculitis.
• Protomyxzoa has been isolated from Culex tarsalis and Culex quinquefasciatus mosquitoes.  81% by PCR carried Protomyxzoa.
• Dogs have Protomyxzoa more than cats and the older the dog, the more likely they are to have Protomyxzoa.
• Diseases are infectious and a biofilm forming protozoan could be at the heart of the problem.
• Treatment may include Tetracyclines, Plaquenil, Flagyl, herbs, enzymes, McDougall diet, and mechanical interventions such as CCSVI venoplasty.
• One should generally not consume arginine, folic acid, or magnesium as these may strengthen the protozoan and thus the biofilm.
• As for folic acid supplementation, some breads have 5% folic acid by weight.  Folic acid may increase cancer risk.  Protozoans love folic acid.
• For autoimmune conditions, antimalarials, antibiotics, anti-protozoals, anti-fungals, anti-biofilm agents, biologics, and dietary modifications may be beneficial.
• Enbrel may be helpful in some for reducing the inflammatory response.
• Fry Labs is now working on drug sensitivity studies.
• CCSVI treatment includes a mechanical clearing or balloon procedure.  It runs about 10K.  There was reportedly one death from a CCSVI procedure.
• Stents do not do very well in veins.
• From the Hubbard Study, about 1/3 feel worse, 1/3 feel nothing, and 1/3 get better with some significantly better.  One bedridden runner was running again after the procedure.
• Protozoans love lipids (fats).  The McDougall diet is used as part of treatment.  Doxycycline and tetracyclines may target the fatty acid synthesis machinery.
• Toxoplasmosis is also dependent on fats.
• Protomyxzoa grows 100 times faster with fats than without.
• There is a reduction in relative biofilms with the McDougall diet.
• In some people where they had seen the organism and biofilms, they could not find the organism after being on the McDougall diet.  Unfortunately, after starting to eat higher fat content, the microbe was again present and visible.
• They did a test in people with Protomyxzoa using a 12.5 day water fast and levels of Protomyxzoa dropped to undetectable.  Within 2 days of eating again, it was back.
• Protomyxzoa is found in CFS, Fibromyalgia, Rheumatoid Arthritis, Lupus, Crohn’s, MS, Parkinson’s, ALS, Autism, Scleroderma, and others.
• Protomyxzoa is Public Enemy #1.
• Protomyxzoa loves fat.  It is complex.  It is drug-resistant.
• Antiprotozoals or anthelmintics may be good options.
• Roy Swank Diet – 0 people on a regular diet lived with MS for 30 years.  In those on low fat diets, all but 1 was still alive.
• Protomyxzoa leads to vascular disease and chronic inflammation.  There are coagulation impairments and retrograde venous blood flow.
• Many systemic diseases can be explained as vascular phenomenon.
• Protomyxzoa is likely transmitted by mosquitoes.  Ticks are being analyzed.
• The protozoan is believed to be the foundation pathogen.
• It is not an intracellular bug; it is a big bug.  Likely exists more on the surface of the RBC, not inside.
• Patients often get worse when on magnesium.  He does not support the use of topical magnesium either.
• Bismuth may play a role as a biofilm inhibitor.
• Omega fats from chicken and plants are probably the best.
• Interestingly, it may be that magnesium is sequestered in the body and not always low as magnesium levels seem to go back to normal when the Protomyxzoa is treated.
• Dr. Fry previously had a success rate of over 70% with his patients.  Since introducing dietary modifications, this has now gone to over 90%.
• http://www.frylabs.com

For information about the work of Dr Brown which Dr Fry refers to see The Roadback Foundation here  and an earlier post here  with a video of Dr Brown and his work.

MULTIPLE SCLEROSIS AND LYME DISEASE?

Local Lyme Disease Researcher to Speak in Hermantown

For the past 20 years since he was diagnosed with a MS-like disorder and treated for Lyme disease, Duluth resident Tom Grier has taken a special interest in Lyme patients that present with symptoms similar to Multiple Sclerosis.

Mr. Grier’s interest in investigating his own disease goes far beyond what the average patient would do.

You see Mr. Grier created an organization that registers symptomatic patients for tissue collection and brain autopsies at the time of their death.

His main interest is to find formerly treated Lyme patients that have gone on to be diagnosed with either MS or dementia.

“Since 1975 when Lyme disease was first described in the medical literature, it has always been an assumption that the organism that causes Lyme disease mostly an arthritic disease and easily eradicated with the traditional and current treatment protocols of antibiotics.”

Explains Mr. Grier. “The truth is no serology test or spinal fluid test can accurately detect the sequestered infection within the human brain.

The only way to know for sure is to do brain autopsies, and look directly at the brain tissue with special dyes and stains.

Without special immune-antibody stains developed by the NIH, the bacteria would remain completely invisible under the microscope.’’

“Sadly no one is doing this kind of Lyme research; oddly the medical community seems to be strangely resistant to this kind of medical research and I’d like to know why? ” asks Mr. Grier.

“Pathology is far more definitive than assumptions, and much of our current understanding of Lyme is based on a very flimsy foundation of facts most of which turned out to be completely wrong.”

Something that Mr Grier points out in his talk are the ten facts about Lyme that the experts got wrong.

As examples, Mr. Grier cites that shortly after Lyme disease was first described in 1975 but before we knew what actually caused Lyme in 1981; that the public was told many things as absolute facts about Lyme disease that all turned out to be untrue.

Grier continues, “We were told by the experts of the time that Lyme was only transmitted by a new species of tick found in the NE USA (Ixodes dammini discovered by Andrew Spielman of Harvard) so Lyme was supposed to be a regional and isolated illness.

We were told it was mainly an arthritic disease and it turns out it can cause severe neurological damage.

We were told it was not transmitted transplacentally but several fetal autopsies have dispelled that myth.

We were told by some Lyme experts that the Lyme disease rash has to be the size of a basketball or it isn’t Lyme disease.

The truth is many Lyme rashes are only a few centimeters or not even seen.

We were told that the Lyme organism isn’t an intracellular organism which can help infections hide and remain dormant and safe from the immune system.

But as it turns out Lyme disease most definitely is an intracellular disease of the brain and we have local brain autopsies that prove this to be true despite their being treated aggressively with antibiotics.”

“The basis of our work is the idea that the bacteria enters the brain early in the infection and is trapped in brain tissue and even trapped inside individual brain neurons.

This happens after the protective barrier called the blood brain barrier is broken down by the infection in the first two weeks before the Lyme tests can even detect the infection.

Then after the infection has been cleared from the blood stream either by our immune system or by antibiotics, the blood brain barrier reseals itself weeks later trapping the infection within the brain.”

Mr. Grier explains that the end result is that the immune system stops making antibodies that the Lyme tests are looking for.

All our Lyme tests are indirect tests and have many many pitfalls.

The infection in the brain remains relatively silent for years or even decades until it results in an MS-like condition.

Explains Mr. Grier, “It isn’t a matter of if this happens because we already have individual pathologies that reveal this to be true.

Following these patients for years doing frequent brain MRIs reveals long-term treatment results in a shrinking of the white-matter lesions that look similar to MS lesions in the brain.

The question is how often is it occurring and what kind of treatment strategies do we need to create to detect brain involvement earlier, and how do we best treat longstanding spirochetal infections within the human brain?”

One of the reasons Mr. Grier has decided to do this talk in Hermantown was because of a Lyme disease documentary being filmed in Twig MN by local Duluth videographer Ben Barneveld who uncovered numerous disabled patients in the local area with a history of Lyme disease.

Unexpectedly a large percentage of these treated Lyme patients progressed on after treatment to having such conditions as:

MS, ALS, Parkinson’s, Rheumatoid Arthritis, and enlarged hearts.

Most of these patients only became aware that their neighbors were also sick like themselves, after local Lyme patients organized a showing of a Lyme disease documentary at the Twig town hall.

Now several of those patients from the Twig-Hermantown area have since registered for brain autopsies and have authorized their remains for Lyme disease research.

The lecture is titled: “Lyme On The Brain” and is a talk based almost entirely on autopsy data and pathology.

Mr. Grier’s lecture is

FREE and open  to the general public

Saturday, April 28th

10 AM

Grace Lutheran Church

5600 Miller Trunk Highway

HERMANTOWN, MINN.

All questions should be directed to

donatebrain@gmail.com

Tom Grier 218-728-3914

2000 (Poland): Lyme borreliosis and Multiple sclerosis: Any Connection? PDF here 

 

A Seroepidemic study. Ann Agric Environ Med. issue 7, 141-143

Synopsis: 

10 out of 26 MS patients tested positive for Lyme borreliosis. Notes how it is virtually impossible to make a distinction between late stage Lyme disease and Multiple sclerosis, not even with MRI. Diagnosis of MS vs. late stage neuroborreliosis are guesswork – there are no reliable tests for either. Conclusion: Multiple sclerosis may often be associated with Borrelia infection.

Ann Agric Environ Med. 2000;7(2):141-3.

Lyme borreliosis and multiple sclerosis: any connection? A seroepidemic study.

Chmielewska-Badora J, Cisak E, Dutkiewicz J.

Source

Department of Occupational Biohazards, Institute of Agricultural Medicine, Jaczewskiego 2, 20-090 Lublin, Poland.

Abstract

A total of 769 adult neurological patients hospitalised in clinics and hospitals situated in the Lublin region (eastern Poland) were examined during the years 1997-2000 with ELISA test for the presence of anti-Borrelia burgdorferi sensu lato antibodies. A statististically significant (p=0.0422) relationship was found between the clinically confirmed diagnosis of multiple sclerosis and the positive serologic reaction with Borrelia antigen. Ten out 26 patients with multiple sclerosis (38.5%) showed positive serologic reaction to Borrelia, whereas among the total number of examined neurological patients the frequency of positive findings was twice as low (19.4%). The result suggests that multiple sclerosis may be often associated with Borrelia infection

PMID:

 

11153045

 

[PubMed - indexed for MEDLINE] 

Free full text

'What is interesting here Adam is that they were not looking for MS, they gave ELISA tests to 769 neurologically impaired patients over a 

3 year period and the ones that tested positive for Lyme was only 26 patients but 1/3 of the time they were  MS patients from that group of 769

That is a high correlation considering the 50 % failure rate of ELISA tests.'

LYME DISEASE THE NEXT DECADE

Lyme disease: the next decade

Perspectives
(156) Article views
Authors: Raphael B Stricker, Lorraine Johnson
Published Date January 2011 , Volume 2011:4 Pages 1 - 9 DOI 10.2147/IDR.S15653 -->Raphael B Stricker, Lorraine JohnsonInternational Lyme and Associated Diseases Society, Bethesda, MD, USAAbstract:

Although Lyme disease remains a controversial illness, recent events have created an unprecedented opportunity to make progress against this serious tick-borne infection. Evidence presented during the legally mandated review of the restrictive Lyme guidelines of the Infectious Diseases Society of America (IDSA) has confirmed the potential for persistent infection with the Lyme spirochete, Borrelia burgdorferi, as well as the complicating role of tick-borne coinfections such as Babesia, Anaplasma, Ehrlichia, and Bartonella species associated with failure of short-course antibiotic therapy. Furthermore, renewed interest in the role of cell wall-deficient (CWD) forms in chronic bacterial infection and progress in understanding the molecular mechanisms of biofilms has focused attention on these processes in chronic Lyme disease. Recognition of the importance of CWD forms and biofilms in persistent B. burgdorferi infection should stimulate pharmaceutical research into new antimicrobial agents that target these mechanisms of chronic infection with the Lyme spirochete. Concurrent clinical implementation of proteomic screening offers a chance to correct significant deficiencies in Lyme testing. Advances in these areas have the potential to revolutionize the diagnosis and treatment of Lyme disease in the coming decade.Keywords: Lyme disease, Borrelia burgdorferi, L-forms, cysts, biofilms, proteomics

http://www.dovepress.com/articles.php?article_id=6013

Go to the above link to download the article.

Dr Bransfield talked at the London ILADS conference June 2010 about the Decade of the Microbe.

The sooner researchers and doctors wake up to this the less patients will suffer from illnesses of 'unknown cause' and start getting treatment for the cause of their illness instead of palliative treatments aimed at just managing the symptoms ie Multiple Sclerosis, Fibromyalgia, Rheumatoid Arthritis, Polymyalgia Rheumatica, Autism and so many more.

I have been busy of late and not getting round to posting partly due to the holiday period but also because I seem to be finding so much of interest on Facebook about ME/CFS developments with XMRV, good news that Dr Sarah Myhill has her licence to practise back and lots of interesting information related to Lyme Disease. Much worthy of posting on my blog but I just haven't had time to do so. Anyone interested can follow the link top right of the blog to read some of the latest information there.

RESPONSE TO CHICARGO TRIBUNE-IDSA IGNORE THEIR OWN RESEARCH ON PERSISTENT INFECTION

The following is a letter from Tina Garcia to the editor of the Chicargo Tribune, following the publishing of the article in the links here and here

Thank you Tina for all your efforts.

Link to Response from Tina J. Garcia CHICAGO TRIBUNE SACRIFICES LYME PATIENTSTO PREVENT ANTIBIOTIC RESISTANCE Click on Tribune link at top of left sidebar http://www.leaparizona.com


Mr. Gerould W. Kern,
EditorChicago Tribune
435 North Michigan AvenueChicago, IL 60611

Re: Chronic Lyme disease: A Dubious diagnosis
by Patricia Callahan and Trine Tsouderos

Dear Mr. Kern:

I am a chronic Lyme disease patient and advocate who has struggled with Borrelia burgdorferi infection for twelve years, since 1998. The bacteria ravaged my body for six years before I was finally diagnosed and began antibiotic treatment at the end of 2004. At one point I could barely walk and could not effectively communicate due to encephalopathy, neurological and musculoskeletal involvement. I became disabled from the disease and lost my job and my home.

To this day, it has been a devastating journey, and this debilitating chronic infection caused by the bite of a tick in Arizona has profoundly altered my life. I could not find one doctor on my insurance plan who would provide treatment. Therefore, my insurance denied coverage, and my family had to pay for it. We were never able to afford the intravenous antibiotics that were recommended by my Lyme-treating physicians. The delayed diagnosis and denial of treatment extended my suffering, caused disability and has prevented a full recovery thus far. My case is not unique; thousands have reported the same lack of medical care.

I am not shy to state publicly that the main reason for the denial of diagnosis and treatment and terrible suffering that I have experienced was caused directly by the Infectious Diseases Society of America’s Clinical Practice Guidelines for Lyme Disease and the Centers for Disease Control and Prevention’s (CDC) dissemination of those Guidelines on its website.

Another reason for the medical neglect of Lyme patients is the failure of the National Institutes of Health (NIH) to conduct meaningful treatment studies. To date, the efforts of the NIH have been unconscionably weak in this area. Studies should have been conducted a long time ago to determine the efficacy of long-term combinations of antibiotics (months to years, as is provided for tuberculosis and leprosy infections), in search of an effective treatment protocol to alleviate the widespread suffering and loss of productivity experienced by those who have developed chronic Lyme infection, due to lack of timely diagnosis and treatment.

Of particular significance, the NIH study performed by IDSA guideline author, Mark Klempner, M.D. was a study that was analyzed statistically by statistical scientist Alison Delong and found to be flawed.
http://www.ilads.org/lyme_disease/media/lyme_video_delong.html

It would be considered inhumane to bring up the issue of antibiotic resistance when referring to patients receiving long-term treatment for tuberculosis or leprosy, both of which are bacterial infections. Leprosy and Lyme disease share the ability to damage the nervous system.

Why then, does the Chicago Tribune find it acceptable to publish an article that encourages the denial of long-term antibiotic therapy to Borreliosis patients, based upon the premise that such treatment causes antibiotic resistance? Does the Chicago Tribune endorse the practice of sacrificing Lyme disease patients, who are afflicted with neurological damage from embedded infection and resulting persistent inflammation, on the altar of antibiotic resistance, in an effort to save antibiotic use for others?

Professor Garth Nicolson, a microbiologist who has studied Bb, stated that the antibiotic resistance argument is “particularly lame.” He explained that another reason for antibiotic resistance is the INADEQUATE antibiotic treatment of virulent pathogens, such as Borrelia burgdorferi, the bacterium that causes Lyme disease. If you have ever received a prescription for antibiotics from the pharmacy, you may recall that the sticker on the side of the bottle recommends that all the medication be used according to the instructions – that all of it should be taken by the patient. This recommendation is made because UNDERTREATMENT of bacterial infections causes antibiotic resistance.

http://www.leaparizona.com/nicolsoninterview.htm

Therefore, each time a physician adheres to IDSA treatment guidelines for Lyme disease, they are contributing to the antibiotic resistance of Borrelia burgdorferi. Each time a Lyme disease patient is UNDERTREATED, Bb undergoes antigenic variation. In other words, it changes to evade the immune system and antibiotics. This is another way that the pathogen persists in the tissues (not only the blood) of those who are infected.

http://www.cdc.gov/ncidod/eid/vol6no5/barbour.htm

In addition, there is no definitive test that proves that Bb is eradicated with the recommended treatment set forth by the CDC and IDSA. Numerous tissue samples would need to be collected and tested to determine this, as Bb does not predominantly reside in the blood, at times rendering antibody tests inconclusive. In order to eradicate Bb from the brain, antibiotics must be administered which cross the blood brain barrier to get into the cerebrospinal fluid, and not all antibiotics are able to do this.

The good news for me is that I have made significant progress through the use of intermittent antibiotic therapy (oral and intramuscular injections) for the past six years. That’s a lot of antibiotic, but the antibiotics have allowed me to regain function. I am grateful for the progress I have made, and my hope is to get to a point where I can go back to work as a functioning and productive member of society. However, I am now suffering from small vessel disease in my brain and multiple sclerosis-type symptoms which incapacitate me periodically.

I was selected by Connecticut Attorney General Richard Blumenthal and the Infectious Diseases Society of America (IDSA) Lyme Disease Review Panel to testify on behalf of the worldwide Lyme disease patient community at a legal hearing held in Washington, D.C. on July 30, 2009.

http://ilads.org/lyme_disease/lyme_idsavideo2.html.

As was reported in the Tribune’s article, the hearing was the result of an antitrust investigation of the IDSA and its Lyme Disease Practice Guideline authors, which was conducted by the Connecticut Attorney General.
It was a privilege to speak on behalf of thousands of people suffering from chronic Lyme infection. The outcome of the hearing and the extensive review of submitted medical research, that clearly showed the existence of persistent Lyme infection despite antibiotic treatment, was a rubber stamping of the current IDSA Guidelines, with no immediate changes recommended by the Review Panel. This decision has served the insurance industry by guaranteeing the continuation of diagnosis and treatment denials, as insurance companies base their denials on the IDSA Practice Guidelines for Lyme Disease.

http://www.leaparizona.com/westerntreat.htm

Although the information I am submitting to you is contrary to what was reported in the Chicago Tribune, it is the truth about the medical neglect that Lyme disease patients are experiencing. Lyme disease patients have struggled for more than thirty-five years, due to a complicated web of issues involving inadequate testing methods, ineffective treatment recommendations published by the IDSA and the failure of the NIH and the CDC to perform new and utilize existing patient-centered research.

By definition, screening tests should have at least 95% sensitivity. The ELISA screening test that is recommended by the CDC lacks such sensitivity and falls short in its specificity, thereby missing detection of a significant number of cases. Such a scenario would be unacceptable for HIV, syphilis, hepatitis, tuberculosis, heart disease, diabetes and cancer; it is, therefore, unacceptable for Lyme infection, also.

During the Lymerix vaccine clinical trials, chief Investigator Dr. Allen Steere, did not use the ELISA because of its lack of sensitivity and specificity.

“ELISA’s are commercially available but lack sufficient sensitivity and specificity for use in efficacy trials…The CDC criteria, however, were developed as a surveillance tool, which frequently necessitates a compromise between sensitivity and specificity to reach the optimal surveillance objective….The CDC criteria were therefore deemed to be inadequate for the purpose of conducting a pivotal efficacy trial.”

http://www.journals.uchicago.edu/doi/pdf/10.1086/516167

It is, therefore, obviously inappropriate for the ELISA to be used as a screening test in the clinical setting, for if and only if the ELISA is positive, are patients ”allowed” to progress to the next level of testing -- the Western blot.

“This study confirmed in the reference and research laboratory setting the previously documented problems with accuracy and precision of serodiagnostic tests by using WCS antigens of B. burgdorferi (4-11). The study confirmed that a serious disparity existed between the test results obtained by CDC and those obtained by academic reference centers with the best testing performances. These results guided corrective action and led to the adoption by CDC and ASTPHLD of a two-test approach to serodiagnosis (23), which forms the basis for the future national standardization of Lyme disease serologic testing methods.“

http://www.cdc.gov/ncidod/eid/vol2no2/craven.htm

How many hoops must patients jump through to receive diagnosis and treatment? In the case of Lyme disease, half of the patients cannot make it through the first hoop (the ELISA), and therefore, never get the chance to be tested by way of the second (Western blot).

This testing recommendation leaves approximately half of all patients with no diagnosis or treatment -- that is certainly medical neglect. Due to its fallibility, the CDC’s serodiagnostic testing recommendation for use of the ELISA as a screening test for Lyme disease should be reassessed by an unbiased committee not associated with the CDC or individuals involved in creating the Dearborn recommendation (which would include authors of the IDSA Practice Guidelines that were investigated by the Connecticut Attorney General).

Published research has demonstrated that Borrelia burgdorferi uses antigenic variation to evade the host’s immune system, thereby ensuring its survival and causing persistent infection. Bb has the ability to morph into various forms. It is commonly recognized as a corkscrew-shaped spirochete; however, it can change into a cyst form, a cell-wall-deficient form, a granular form and a bleb form and protects itself with a biofilm that sequesters it from attack by the immune system and antibiotics.

http://www.stcatherines.chsli.org/lifecyclepaper.pdf

Published research indicates that “the interplay between the host and invading spirochetes results in a cascade of signaling events that B. burgdorferi can use to facilitate persistent infection.”

http://www.jimmunol.org/content/167/6/3383.full

Uncertainty about the existence of chronic Lyme infection is a direct result of misleading information and opinions that have been circulated by the IDSA Guideline authors who were investigated by the Connecticut Attorney General, along with other spokespersons for the CDC. This is a small group of researchers who have, for many years, continually received a large portion of the federal research funds allocated for Lyme disease. Their unfounded statements that chronic Lyme infection does not exist directly contradict the research they have already published in which they did, indeed, demonstrate persistent infection. In fact, there is no uncertainty about chronic infection among patients and the physicians who actually treat patients with chronic Lyme disease.

Please see the research excerpts included at the end of this correspondence.
If patients do not receive diagnosis in the early stage, the disease will develop into a chronic, relapsing/remitting illness that becomes even harder to diagnose and treat. Attempting to clear an embedded infection (one that has persisted for several years), with an early-stage, short-term treatment protocol as has been recommended by the IDSA, is ludicrous.

Borrelia burgdorferi colonizes all the organs and tissues of the body, and due to its antigenic variation, its biofilm and its ability to morph into evasive forms, repeated courses of various antibiotics are needed to fight the embedded infection.

http://www.youtube.com/watch?v=a4uNDWdChM8

In the hurried world of practicing clinicians, it is easy for the line between acute and chronic treatment recommendations to appear nebulous, and those who espouse the CDC/IDSA party line are quite adept at smudging the line that should separate acute from chronic treatment. In fact, the Lyme Medical Cartel has continually used the media to accomplish their despicable dissemination of false medical information. However, if one reads the published literature and makes the crucial distinction between the research on acute and the research on chronic Lyme infection, one will see that there actually is no controversy at all. The controversy has been fabricated by the Lyme Medical Cartel.

Patients are in desperate need for government healthcare agencies, such as the CDC, to utilize research that has already demonstrated persistent infection. You will hear so-called “Lyme experts” make statements that chronic Lyme disease does not exist. You will also hear them reference terms they coined – Post Lyme Syndrome (PLS) and Medically Unexplained Symptoms (MUS). There is no proof of the existence of either PLS or MUS in relation to infection from Borrelia burgdorferi; these are merely opinions passed off as consensus.

Once again, much of the research on persistent infection has been published by the individuals who are now calling persistent infection “Post Lyme Syndrome” and “Medically Unexplained Symptoms “ They are, therefore, contradicting their own research. Their contradictions, published in the IDSA Practice Guidelines, have resulted in the wasteful use of federal research funds, caused insurance denials of treatment and the medical neglect of suffering patients.

In my opinion, the NIH and CDC have continually wasted precious funding allocated by Congress, which should instead be utilized for patient-centered research, not pet projects of individuals investigated for their financial conflicts of interest related to Lyme vaccines, patents for diagnostic tests and consulting arrangements with insurance companies.

The General Accounting Office (GAO) previously investigated the matter of research funds for Lyme disease and determined that the CDC did, in fact, spend appropriated funds on Lyme disease research. This determination, although accurate, did not expose the research monopoly that exists between the CDC and the “most powerful IDSA panelists” who authored the IDSA Practice Guidelines for Lyme Disease. Yes, they funded Lyme research, but the majority of the funds have been granted to members of the Lyme Medical Cartel, who in my opinion, take their marching orders from the CDC.

Connecticut Attorney General Blumenthal revealed the following in his May 1, 2008 Press Release:

"The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions.

Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification. The guidelines are also widely cited for conclusions that chronic Lyme disease is nonexistent.”

"This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines," Blumenthal said. "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.”

Blumenthal added, "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.

In today's healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions. As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards.”

Cancer patients are given the choice of chemotherapy with dangerous drugs that not only destroy cancer cells, but cause extensive damage to the rest of the body, as well. Despite the risks associated with cancer chemotherapy, cancer patients are given additional treatment when they relapse, and physicians specializing in cancer therapy are not discouraged from doing so.

Lyme disease patients do not relish using antibiotics for prolonged periods, just as cancer patients do not enjoy undergoing chemotherapy. However, at the present time, antibiotic therapy is the only treatment that provides relief and improvement in symptoms, and the choice of accepting the risks of intravenous infusion of antibiotics should rest with the patient and their treating physician, not the IDSA, which the majority of Lyme patients view as a pseudo-paternalistic medical dictatorship.

For clarification, the majority of Lyme patients do not pursue the dangerous treatments described in the Tribune’s article. It was, therefore, misleading to portray the Lyme patient community as ill-informed consumers. Veteran Lyme patients are quite knowledgeable of the disease they are infected with and most can talk circles around medical doctors who have no experience treating the disease. It is simple reasoning to come to the conclusion that the majority of IDSA member physicians fall into this category, as they deny the existence of the disease.

Therefore, if ID physicians deny the existence of Lyme disease and refuse to treat patients, they don’t have any experience with the disease, correct? So, how can they refer to themselves as Lyme experts? Such a physician would actually be considered a charlatan. The IDSA mantra that chronic Lyme disease does not exist is the blindfold that allows these sheepish IDSA member physicians to fall off the cliff into an abyss of ignorance and arrogance.

Research has demonstrated the remitting and relapsing nature of Lyme disease infection. It is, therefore, inhumane to deny Lyme patients access to long-term antibiotic therapy that is legally prescribed by licensed physicians. If Lyme disease patients are willing to accept the risks of such treatment in lieu of a chronic, debilitating, infectious disease, insurance companies should provide coverage for such treatment and not shirk their responsibility based upon the IDSA Practice Guidelines – Guidelines that were written by those who, at the same time that they publish guidelines for use by the insurance industry, they also serve as insurance consultants and expert witnesses in medical board prosecutions against physicians who actually have experience treating the disease. Now that’s a story your journalists should investigate and publish.

http://www.underourskin.com/

Lyme disease patients expect insurance companies to cover long-term antibiotic therapy, if such therapy is recommended by their treating physicians. In the clinical setting, Lyme disease patients and treating physicians have consistently reported evidence of in utero transmission and suspect sexual transmission, as well. Due to the fact that Borrelia burgdorferi has been found to live in frozen blood for up to eight months, transmission via our nation’s blood supply should also be studied and given serious consideration.

http://www.underourskin.com/

http://www.canlyme.com/blood_supply_lyme_risk.html

Studies on such modes of transmission have not been adequately pursued. I have strongly urged that such research be funded and performed immediately, as our failure to address these important issues of transmission of Lyme disease, a spirochetal disease that is similar to syphilis, may be jeopardizing public health of and perpetuating the pandemic.

The Lyme patient community has requested assistance from the CDC and the IDSA for many years, but patients have been either ignored or publicly ridiculed, the latter being done by the Chicago Tribune in the Callahan/Tsouderos article. Thus the need for me to write this lengthy essay as a public service.

The Lyme patient community no longer relies upon the CDC or the IDSA to be the guardians of our health, as the research and programs that are funded and performed by them and the clinical practice guidelines that are published and disseminated by them are not “patient-centered.” Nor is the research that demonstrates the existence of persistent infection utilized by the CDC and IDSA for the benefit of patients.

Instead, the research is contradicted, or simply ignored, in favor of personal agenda-promoting opinions and manufactured disease parameters. As revealed formerly in the CT Attorney General’s Press Release, these financial conflicts of interest were exposed during the antitrust investigation of the IDSA and its 2006 Lyme Disease Practice Guideline authors. Unfortunately, the Attorney General was not able to extend his investigation into the bowels of the monopoly -- the CDC and its Division of Vector-Borne Infectious Diseases, and possibly, the United States Public Health Service, which if you recall, led the Tuskegee Study of Syphilis from 1932 to 1972.

Despite extensive funding for Lyme disease research, the healthcare needs of Lyme disease patients have been neglected for too long. Precious funds are wasted by those who place their own interests in developing a Lyme vaccine and marketable test kits above the health needs of patients.

Clinical practice guidelines are being written and published to serve the personal agendas of the authors and those who have a stake in the guidelines, barring the most important stakeholders – the patients.
The irresponsible behavior of the IDSA prior to, during and following the investigation and review process of the IDSA Practice Guidelines for Lyme disease, in the form of fraudulent public statements that chronic Lyme infection does not exist and their continued dissemination of other false information, such as,

“no convincing biologic evidence for a Lyme infection that persists”
has caused the majority of their infectious disease member physicians to deny diagnosis and treatment to chronic Lyme disease patients.
The CDC plays a leading role on the world stage of health. The CDC provides a link to the IDSA Practice Guidelines for Lyme disease on its website, and this action has resulted in diagnosis and treatment denial to chronic Lyme disease patients in the U.S. and in other endemic countries around the globe.

At the recent October Institute of Medicine forum on the state of the science of Lyme disease, the patient community suggested that funding be given to other researchers not involved in the Lyme Medical Cartel research monopoly. This monopoly is the one that Willy Burgdorfer, Ph.D., discoverer of the Lyme disease bacterium, referred to when he made the following statement in the film “Under Our Skin”:

“The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing.

Serology has to be started from scratch with people who don’t know beforehand the results of their research.”


http://underourskin.com/blog/?p=191

With regard to the other article in the Chicago Tribune entitled “Behind the curtain on our investigation into dubious medicine,” Trine Tsouderos stated the following:

“Working at a newspaper devoted to digging deep on behalf of our readers, we believe it is our mission to develop well-researched stories as an antidote to all the unfiltered and unreliable information on the Internet. We do that by investing time and resources into stories like these."

Allowing the current Tribune article, with its many flaws, to stand as a factual reference and an example of a well-researched story, is irresponsible journalism that continues the damaging medical neglect of thousands of patients who have been diagnosed with Lyme disease in North, Central and South America, Europe, Asia and Australia. This is an infectious disease pandemic that is disabling people worldwide. A more knowledgeable reflection of the journalists would be cast, if Ms. Callahan and Ms. Tsouderos would cease parroting the following Lyme Medical Cartel misinformation –

“infected ticks live mostly in Minnesota, Wisconsin and the Northeast.”

Many patients who have been diagnosed with Multiple sclerosis, ALS, Parkinson’s, Alzheimer’s, rheumatoid arthritis, fibromyalgia, chronic fatigue and lupus have subsequently been diagnosed with and treated for Borrelia burgdorferi infection. The reason these diagnoses are made initially is because chronic Lyme infection can manifest as all of these conditions.

Published medical research has also shown that Borrelia burgdorferi can cause non-Hodgkin’s lymphoma. If you share this bit of information with Dr. Joseph Jemsek’s former patient, Phillip Moore, Mr. Moore may find it interesting and pertinent.

http://www.ncbi.nlm.nih.gov/pubmed/18424667

A more responsible article would include this information, as it would provide motivation to a very large number of patients, who are diagnosed with these conditions, to seek a possible infectious etiology and treatment that may improve their health. If you figure it out mathematically, the Chicago Tribune holds in its media hands, a way to possibly help a substantial number of people by researching and publishing an article around this information. The choice is yours.

Therefore, on behalf of suffering patients, I request that the Chicago Tribune and its investigative journalists, Patricia Callahan and Trine Tsouderos, publish a follow-up article that incorporates the information I have provided in this correspondence. Such a follow-up article would demonstrate to the public that the Chicago Tribune should not be held accountable, through its complicity with the Lyme Medical Cartel, of perpetuating the inhumane medical neglect of Lyme disease patients that has occurred for more than thirty years.

If you read the Tuskegee Timeline on the CDC website, you may be surprised at the similarities between the Tuskegee Study of Syphilis that was inhumanely carried out by the United States Public Health Service / condoned by the CDC and the denial of diagnosis and treatment for those infected with Borrelia (a cousin to syphilis). There’s another story for you, if your investigative journalists have the courage to tackle it.

The journalist who broke the story of the Tuskegee Study in the 1970’s helped bring closure to that inhumane medical “study” that resulted in a public apology from President Clinton and a financial settlement with the victims and their families.

http://www.cdc.gov/tuskegee/timeline.htm

Thank you in advance for your consideration of the important issues and information I have provided, and I anxiously await your response.
Sincerely,
Tina J. Garcia
Founder
Cc: Deborah Shelton, Health Editor
Patricia Callahan, Investigative Journalist
Trine Tsouderos, Investigative Journalist

Excerpts from Research Published by IDSA Lyme Disease Guideline Authors

With regard to the 2006 14-member IDSA panel and the review of research by those IDSA guideline authors, it is evident that they did indeed deem some Lyme-related research as not meeting “rigorous scientific standards.” It is astounding that some of the research the IDSA panel members chose to ignore was their very own. The IDSA Review Panel also ignored the guideline authors’ research and more than 1600 pages of research and analyses submitted by the International Lyme and Tick-Borne Diseases Society (ILADS).

Here are but a few examples of the 2006 IDSA Guideline Authors’ research:
This is an abstract from a published article co-written by Allen C. Steere, one of the authors of the 2000 and 2006 IDSA Treatment Guidelines, in the New England Journal of Medicine, Nov 22; 323(21):1438-44, which refers to a study of Borrelia burgdorferi:

“These chronic neurologic abnormalities began months to years after the onset of infection, sometimes after long periods of latency, as in neurosyphilis…The typical response of our patients to antibiotic therapy supports the role of spirochetal infection in the pathogenesis of each of the syndromes described here…The likely reason for relapse is failure to eradicate the spirochete…This last article is one of many studies that show continuing symptoms are most likely due to persistence of the spirochete.”

The following is from another published article by Dr. Allen C. Steere:
Steere, AC., 1995, Musculoskeletal manifestations of Lyme disease. American Journal of Medicine, 1995, 88:4A-44S-51S.
“…a 1-month course of oral antibiotics may not always eradicate viable spirochetes.”

Also from Steere:
Steere, AC., et al., 1994, The long-term clinical outcomes of lyme disease. A population-based retrospective cohort study. Annals of Internal medicine, 121(8)560-7.
“Ten of the 38 patients with Lyme disease reported relapses within 1 year of treatment…and had had repeated antibiotic treatment (5 patients with intravenous ceftriaxone). …Patient 4, in addition, had had second degree atrioventricular block with acute Lyme disease that resolved with penicillin treatment. Her irregular rhythm recurred 2 years later, resolved temporarily with ceftriaxone treatment, but progressed to complete heart block requiring a pacemaker. …Patient 12…was treated with 2 weeks of parenteral penicillin. She later developed a progressive speech disorder, bradykinesia, and abnormal ocular motor function. Magnetic resonance imaging of the brain showed scattered white matter lesions in the hemispheres and pons…she was re-treated with 2 weeks of parenteral ceftriaxone in 1989 that had no effect on her neurologic symptoms. During the time of observation, this patient died. At autopsy…[using] Dieterle silver stain, a spirochete was present in the cortex and another was exterior to a leptomeningeal vessel.”

From Raymond J. Dattwyler, another author of the 2000 and 2006 IDSA Treatment Guidelines:
Dattwyler, RJ., et al., 1988, Seronegative Lyme disease. Dissociation of specific T-and B-lymphocyte responses to Borrelia burgdorferi. New England Journal of Medicine, 1988, 319(22):1441-6.
“We studied 17 patients who had presented with acute Lyme disease and received prompt treatment with oral antibiotics, but in whom chronic Lyme disease subsequently developed.”

This scientific published research by Drs. Steere, Dattwyler and Klempner, members of the IDSA panels, for some odd reason does not meet the IDSA’s “rigorous scientific standards” and does not support the IDSA hypothesis that chronic Lyme disease does not exist.

The IDSA Guideline authors demonstrated that chronic Lyme disease is caused from persistent bacterial infection. So, they not only ignored a worldwide body of published research, but they ignored their very own research in the formulation of the 2000 and 2006 IDSA Guidelines for the treatment of Lyme disease.