Chronic Lyme: Real or imaginary?
One of the more surprising observations made while filming Lyme sufferers for UNDER OUR SKIN, was that almost all had been misdiagnosed as having “hypochondriasis,” or, “it’s all in your head” syndrome before receiving a Lyme diagnosis.
The SPECT scan above shows the brain of a Lyme patient before and after treatment with IV antibiotics. The healthy orange areas of the brain are receiving adequate blood flow. The black and blue areas are starved for oxygen due to inflammation caused by the Lyme bacteria. (Photo courtesy of Dr. Robert C. Bransfield, MD, and Psychiatric Times.) A person with that much of their brain out of commission may exhibit any number of neurological symptoms, including depression, rages, seizures, and even hallucinations.
Though it’s fairly obvious that this brain is impaired, SPECT scans are not mentioned as a diagnostic tool in the latest Infectious Disease Society of America (IDSA) Lyme disease guidelines, despite a number of promising studies out of Columbia University.
Instead, the IDSA Lyme guidelines endorse an indirect antibody testing protocol that misses well over half the truly ill patients, and attributes ongoing Lyme disease symptoms to the “aches and pains of daily living.”
At the 2008 American College of Rheumatology (ACR) Scientific Meeting, the IDSA Lyme Guidelines foot soldiers were out in force, armed with more “evidence” that chronic Lyme disease is an imaginary disease.
Among the presenters was Leonard Sigal, M.D., R&D Director of Immunology at Bristol-Myer Squibb, and a contributor to both the 2000 and 2006 IDSA Lyme Guidelines. Calling ongoing Lyme symptoms, “Post Lyme Disease Syndrome” or PLDS, Sigal’s poster presentation said:
“After adequate antibiotic treatment, very rarely do patients continue to manifest objective evidence of ongoing infection, yet it has been estimated that over one third of Lyme disease patients report chronic physical, cognitive, and psychiatric symptoms or PLDS. There is no evidence that PLDS patients have ongoing infection with B. burgdorferi.”
“Close to 45% of patients with Lyme disease will manifest the chronic symptoms characteristic of PLDS.”
“Further, psychological factors such as depression and maladaptive belief systems could be significant risk factors for PLDS”
The problem with this study is the potential for bias. Isn’t it possible that these patients are suffering from treatment failure due to inadequate doses of antibiotics? Is Dr. Sigal really qualified to diagnosis these patients with a “maladaptive belief system,” when he is not a psychiatrist—he’s a rheumatologist? And what about his affiliation with Bristol-Myer Squibbs?
Though Sigal’s studies are cited 5 times in the 2006 IDSA Lyme guidelines, and he’s listed as a reviewer, nowhere is it mentioned that:
-
–Sigal’s employer, Bristol-Myers Squibb (BMS), sells two blockbuster drugs, Orencia ($129M in 2008), which treats rheumatoid arthritis and potentially Lupus, and Abilify ($606M in 2008) which treats depression. Many sufferers with late-stage, undertreated Lyme disease exhibit joint pain and depression, and are misdiagnosed with these syndromes of unknown cause.
–Both Orencia and Abilify have recently received approval for use on children, and Bristol-Myers Squibb recently donated $5 million to the Bristol-Myers Squibb Children’s Hospital at Robert Wood Johnson University Hospital (RWJUH) to create three new clinical centers, including a new center for the treatment of Rheumatic Diseases in Children. As the former chief of the Rheumatology at RWJUH, Sigal is a volunteer lecturer at the RWJ medical school, and he publishes jointly with his former collegues at this medical school.
—Dr. Sigal is a reviewer of insurance case files for Prudential, Aetna, Anthem, MetLife, Metro Health, and BCBS. He typically earns over $500 per hour as an insurance expert witness in workers compensation cases that involve Lyme disease.
Could these commercial interests, which are not disclosed in the IDSA guidelines, create bias among front-line physicians, in diagnosing hypochondria, RA, or depression over chronic Lyme disease? Maybe. (For more on the influence of pharmaceutical companies on prestigious academic medical centers, see the “Harvard Medical School in Ethics Quandary” article in the New York Times.)
Because these types of conflicts muddy the evidence-based medicine waters, we applaud Connecticut Attorney General’s efforts to remove conflicted panelists from the new IDSA Lyme Guidelines writing committee.
Based on our research in the film, we tend to support this take on chronic Lyme disease, by Stricker et. al in Future Microbiology:
“…there is growing scientific evidence that chronic Lyme disease does exist, and that this clinical condition is related to persistent infection with B. burgdorferi as shown by microbiological and molecular studies. Persistent infection occurs in animal models and humans because the Lyme spirochete is able to evade both the host immune response and short-course antibiotic therapy to establish chronic infection in protected tissue sites, much like TB. This chronic infection leads to persistent musculoskeletal, neurologic and cardiac symptoms that are the hallmark of chronic Lyme disease. By contrast, the leading theory for persistent symptoms owing to ‘post-Lyme syndrome’, namely an autoimmune response triggered by the eradicated spirochetal infection, has not been supported by scientific evidence.”
For more on Chronic Lyme, see the video clip, “Patients Abandoned,” on the UNDER OUR SKIN site.
| 17 comments |
 |
17 Comments so far
Leave a reply
“B. burgdorferi as shown by microbiological and molecular studies”(Stricker et. al in Future Microbiology)….that to me seems a more reliable determination of chronic Borrellia infection than Sigal’s non-quantified over reaching statements.
Argh the corruption in the medical community is terrifying.
[...] Chronic Lyme: Real or imaginary? [...]
According to consumer advocate Ralph Nader, Over 100,000
people a year are killed by doctors.
How can I believe anything doctors have to say with a reputation like that.
The vast majority of Physicians go into medicine for the Money and prestige. Helping people is something they have to do to keep it that way.
You either have lyme or you don’t; Whoever PROVES this wins.
When I got lyme I was the healthiest I’d ever been.
I went birding at Brigantine, NJ and got a bunch of tick bites. One of them got the telltale rash around it, after a few days. As soon as I got back I went right to the doc- they prescribed 6 weeks doxycycline 200mg/day. which I faithfully took. Two months later, in I suddenly got slammed with a horrible illness- some synmptoms were: 103+ temperature, pain in shoulders and hips, nausea. This was the beginning of a more-than-two-YEAR nightmare with Lyme Disease. But wait it MUST have been ‘….hypochondriasis’… after all, they um, uh, ..’tested’…(yeah, RIGHT) me for lyme and it was …’negative’…(yep-yep)!! As you can see, the IDSers are so full of ‘it that it’s coming out of their ears as well as spewing out of their mouths.
(…so probably, from a “legal” standpoint, this deadwhiler duck owes me about $2 million… But this is amerika…you only get that much or more if you spill macDonald’s coffee in your lap….)!
hcfdave
PLDS does not make any sense. It is a convenient diagnosis for those who want to continue the farse that a short course of antibiotics will “cure” lyme disease. It seems so obvious, that, if someone continues to have the exact same symptoms after a short course of antibiotics, then they continue to have the infection.
The medical community admits that antibiotics fail on a number of other bacteria, and yet, they will not budge on lyme. I have a friend who had a sinus infection for years, which antibiotics never cured, until she had surgery to remove the infection. I didn’t hear any MD’s say that she had “post sinus infection syndrome”. It’s unbelievable.
I have been treated with YEARS of antibiotics-oral, IV, and intramuscular. I was then retested by the lyme antigen flow cytometry test, which tests for the actual bacteria (not the host’s immune response). Well, it came back positive. So, there’s your evidence of persistent infection!
Wow, unbelievable and yet quite believable at the same time! I am sickened by the background history of Sigal. Talk about conflicts of interest!! This only further confirms the points made in your film. These are some brazen, corrupt people.
Thanks for doing the research and telling us about it!
Theresa
This article is absolutely great, thank you so much for keeping on top of the publications!
This is a very nicely designed and laid out site, and it is not very often I have the chance to be the first to comment.
Having Lyme, or similar disease twice over a period of nearly 15 years, in Michigan where Lyme is “not endemic”, I have become very aware of the very odd intensity of some doctors’ efforts to deny that people (like myself) have a chronic condition after infection and delayed first treatment.
On the other hand, many doctors I have visited, and their nurses, in casual conversation about Lyme, as long as I am not there complaining or looking for treatment for Lyme, candidly discuss how they have friends, relatives, and acquaintances who have or have had Lyme disease.
I don’t trust any physician who is a “thought leader” for Big Pharma.
As a Lyme patient with significant cognitive impairment, I am thrilled to see that the SPECT scans are showing the mechanism of cognitive impairment in the brain, helping support the validity of Lyme patient’s claims in this area and most importantly- Improvement!! Thank you for sharing.
A sensible solution to settling the chronic Lyme question is to involve Dr. Sigal and the other members of the IDSA in a study where they would be infected with the Lyme spirochete and receive the IDSA recommended treatment protocol involving a few weeks worth of antibiotics. To keep the study as close to the real-life course of the disease as possible, several of them must be denied treatment for years or decades. Despite having bull’s eye rashes and other clinical signs of Lyme, if their blood tests are negative, they would not receive any antibiotic treatment whatsoever. We need to be sure they understand that the spirochete is a second cousin to the syphilis spirochete and without treatment can cause neurological problems, heart problems and mental disorders. They would be required to travel from doctor to doctor, and have the experience of being told their illness is a psychological problem. If they still don’t feel well, they must be exposed to ridicule at the hands of professional organizations and sarcastic practitioners. Even though $10 worth of antibiotics might resolve their illness, they must not be given treatment because such treatment might be “dangerous.” Let the research begin. I’m not kidding.
Great article Kris! Make sense to me that there’s some pretty clear underlying bias present here. Thanks for your post!
Thank-you anon (hv808ct) for joining the discussion on chronic Lyme.
Open Eye Pictures would like to address your points, one by one. (Some portions of your post were deemed to be libelous, so we removed them.)
RE: “Instead, the IDSA Lyme guidelines endorse an indirect antibody testing protocol that misses well over half the truly ill patients, and attributes ongoing Lyme disease symptoms to the “aches and pains of daily living.”
hv808ct: Right. People are really going to waste time and money on a 50:50 assay. How about some references for the above statement??
Open Eye: The missing citation: A Johns Hopkins 2-yr study (2005) finds that the CDC 2-tiered testing procedure misses 75% of positive Lyme cases. Coulter, P, et. al. 2005. “Two-Year Evalution of Borrelia burgdoferi Culture and Supplemental Test for Definitive Diagnosis of Lyme Diesease”, J Clin Microbiol. 2005 Oct;43(10):5080-4. (You have to read the body of the article for these stats.) And if you don’t believe Johns Hopkins, the NY Dept. of Health (1996) told the CDC that its 2-tiered testing procedure misses 81% of positive Lyme cases. Source: (Source: Fritz, C. 1996.)
hv808ct: “But Len wasn’t one of the Guidelines authors.”
Open Eye: But Dr. Leonard Sigal is listed as a contributor to the IDSA Guidelines: “The Expert Panel also wishes to express its gratitude to Paul G. Auwaerter, Michael A. Gerber, and Leonard H. Sigal for their thoughtful review of an earlier draft of these guidelines.” Dr. Sigal was a lead author on the 2000 IDSA Guidelines and was in a business relationship with Dr. Wormser. Dr. Wormser was the founder of the company, Diaspex, which was a subsidiary of and co-located with Cenogenics, which has patented a Lyme peptide that would be compatible with upcoming SKB, Baxter, AZ vaccines. Dr. Sigal is an inventor on that patent.
http://www.patentstorm.us/patents/7045134.html
RE: “Sigal’s employer, Bristol-Myers Squibb (BMS), sells two blockbuster drugs, Orencia ($129M in 2008), which treats rheumatoid arthritis and potentially Lupus, and Abilify ($606M in 2008) which treats depression. Many sufferers with late-stage, undertreated Lyme disease exhibit joint pain and depression, and are misdiagnosed with these syndromes of unknown cause.
hv808ct: BSM had sales totaling $20.597 Billion in 2008. Sales of Orencia and Abilify make up about 3.5% of total sales. Big deal; they could have made more money pushing antibiotics.”
Open Eye: If you read BMS’s annual report, both Orencia and Abilify represent big growth areas for BMS, and they are currently running multimillion dollar TV ad campaigns for these drugs. The point is, everyone agrees that Lyme can be **cured** with an **early**, inexpensive dose of antibiotics. The IDSA guidelines require that non-rash patients have a positive ELISA and Western Blot before receiving treatment. According to the IDSA, the ELISA isn’t reliable in the first month, and once you wait two months for all these test results to come back, a person can have entrenched neurolyme that can’t be cured by IDSA’s recommended two weeks of antibiotics. Once a person has late-stage undiagnosed Lyme, they may have to take anti-inflammatory drugs or anti-depressives or MS drugs for life. It’s a gold mine for Big Pharma. I’m not saying it’s some evil conspiracy, I’m saying they’re just following the money.
hv808ct: Dr. Sigal is a reviewer of insurance case files for Prudential, Aetna, Anthem, MetLife, Metro Health, and BCBS. Yeah, the last time was in the mid-1990’s.
Open Eye: So, has Dr. Sigal told you he’ll never review Lyme case files, write insurance guidelines, or testify against Lyme patients again?
RE: Could these commercial interests, which are not disclosed in the IDSA guidelines, create bias among front-line physicians, in diagnosing hypochondria, RA, or depression over chronic Lyme disease? Maybe.
hv808ct: “Maybe guys are biased, seeing Lyme everywhere they look. And looking for it among the foolish and desperate members of the LDA, the Turn the Corner Foundation, the Morgellons Foundation, and the Lyme-induced Autism Foundation. I think this is called trolling for patients.”
Open Eye: Most of the Lyme clinicians we have met are overwhelmed with patients, in light of an epidemic that has increased 37% in 2007. A few have waiting lists over a year long, and would welcome “competition.” (No physician likes to turn away desperately sick patients.) We’re not saying there aren’t some charlatans out there, but IDSA has created opportunities for the quacks by frightening legitimate physicians away from treating Lyme patients. The IDSA Lyme authors have been active participants in the well publicized condemnation of well-meaning Lyme physicians, such as Dr. Jones and Dr. Jemsek.
[...] and may persist in a large number of patients, requiring prolonged antibiotic therapy to eradicate persistent infection with the evasive Lyme [...]
[...] UNDER OUR SKIN Blog Chronic Lyme Real or imaginary Posted by root 16 minutes ago (http://underourskin.com) This chronic infection leads to persistent musculoskeletal and it is not very often i have the chance to be the first to comment many sufferers with late stage undertreated lyme disease exhibit joint pain and depression theme fspring design by fredrik fah Discuss | Bury | News | UNDER OUR SKIN Blog Chronic Lyme Real or imaginary [...]
Sherrill,
Brilliant Thought! I’m right there with you!!!!!!!!!!!
Give them the same treatment they are giving us. If they are so sure of themselves and how chronic Lyme does not exist, then how can they even be afraid of being bitten themselves??? Or their family? I think it would be a whole different story if one of them was infected and had to go through the whole rigomorole (sp?) that we do. And to get the type of treatment that they are giving us. Things would be different in a heartbeat!
The most informitive and comglamitive information compiled here of any site I’ve seen…I have been on two meds and truelfully have not received to much information from my Doctor as I go though this illness and depressed state…Not a great feeling …Slows you down so much…Not like the flu where you get sick for a week or two and your back on your feet …Every day I hope it’s the last day of feeling sick and the next day follows in the same manner…
Chris