Physicians/scientists are a conservative lot. They operate within a paradigm- a construct of ideas the theories which form the basis of the reality or truth from which they operate. Unfortunately, physicians sometimes confuse a working paradigm with absolute truth. A blurring of this distinction makes it easier for physicians to treat patients on a daily basis. A popular metaphor is "the box." People are said to think within the box or outside the box. Physicians who treat chronic Lyme disease are challenging the conventions. They challenge not only the prevailing paradigm, but they challenge the process which creates and massages the paradigms which form the basis of contemporary medical practice. It is also a story of the few taking on the many, a tale of David versus Goliath. Both sides, IDSA and ILADS, can become very determined, arrogant and angry as they posit their points of view. This has the effect of pushing the other side into a defensive posture. The defensive posture does not lend itself to listening or collegiality; instead, it can create a more bellicose tone. I think some readers have a hard time understanding the vitriol found in the IDSA-ILADS paradigm war.
As the war between the IDSA and ILADS has played out, the IDSA has become more dug in. The guidelines have become more rigid, less flexible. The mainstream has clung tenaciously to its Bible. I would argue that the "Bible"- Harrison's textbook of medicine and other iconic sources allows for more lee way than the mainstream opinion would have one believe. History has shown that minority opinions frequently turn out to be correct.
The fight has morphed into a populist movement. Patients and Lyme treating physicians have tried to sway governmental politics. Those who do not know, a prior, that chronic Lyme does not exist, can easily see the "truth" to this side of the argument. Physicians who do not have a dog in the fight, those who don't know enough about the issues to have an opinion, stay mute on the sidelines. The political machine of mainstream medicine, with its certainty and arrogance, sits tight in its opposition, ever convinced that it will prevail. The fate of Lyme patients, many of whom are desperately ill, and their physicians, many of whom are passionate in their mission to heal- hangs in the balance.
Chronic Lyme is a very real medical issue. This is why I push for a mainstream look at the issues, which avoids CAM and other medical practices for which organized medicine has nothing but disdain. Whether or not herbs and accupuncture work is another fight for another day. My fight is about germs, antibiotics, physiology, immunity, molecular biology and medical practice.
Thank you for treating Lyme patients.
That is why you are my doctor, thanks for everything. By the way, fellow Lyme friends of mine are being treated with colloidal silver by other doctors.
There is no room for colloidal silver- known to be very toxic- intravenous hydrogen peroxide- which has been associated with fatatlaities and at least on doctor convicted of homicide- or EDTA- which is very questionable.
We have established medicines that work.(antibiotics). The use of adjunctive therapies such as plasmapheresis, IViG, and HBO, are established therapies with a safety record and sensible mechanism of action. These are still considered experimental. When medical boards threaten medical licenses for simply prescribing Amoxicillin, these things are off the board for the present time.
As an outsider to the medical community, the issue that I do not understand is the firm insistence of the IDSA that there is no objective measurement to confirm chronic Lyme disease. There are many other types of physicians that routinely treat patients based on subjective symptoms, with no objective measurements. In some cases those therapies may carry at least as much risk as the typical long term antibiotic therapy that is used with Lyme disease, and in many cases the patients are not as disabled in subjective terms as chronic Lyme sufferers.
If rheumatologists can treat Fibromyalgia and SLE and generalist physicians can treat depression with anti-depressants based mostly on subjective symptoms, then why is the ISDA justified in demanding objective evidence for chronic Lyme?
There is plenty of evidence of chronic infection in human and animal models despite treatement.
It is amazing that its ignored.
There is not however significant evidence (controlled studies, peer reviewed literature, etc.) that long term antibiotic treatment is effective in humans. Fallon shows some improvement but then relapse. However, we all know plenty of clinical and anecdotal evience it works and is needed.
I just don't understand how the IDSA can deny the existence of chronic infection based on the evidence above. There has to be some answer here - it just doesn't make logical sense.
LymeMD - what do recommend patients/interested parties do beside lobby government? The new IDSA panel has been announced - do you recommend letters to them? Anything else?
Staris, I agree that there is plenty of information regarding the continuing presence of infection, but my impression of the IDSA is not that they outright deny that chronic infection could exist, but that there is no objective way to say that it does exist in any particular patient. What I am curious about is why that standard of proof is required for Lyme disease when there is general agreement about treatment in other areas of medicine where the evidence is mostly subjective as well.
It is impossible to understand the IDSA's position. Can they prove that a person is cured of Lyme disease? I don't think so. Why can't it just be "the infection is still active" like other diseases when patients still have symptoms regardless of test results. Like you say, the treating physicians and patients are paying a very high price for this. Sometimes it just seems too high but I don't know what we can do either. I'm willing to rally and march alongside others.
IMPT : IDSA just posted this about public input.
I hope the new IDSA board looks at everything. I encourage people with medical backgrounds to comment on the proposal.
The public hearing is in DC - LymeMD - want to present??
Pseudonymity - I agree with you - I just misinterpreted your previous post. Many other disease are treated without objective evidence. Its a pity it has come to this.
This is in the IDSA's Q&A re: Lyme:
"Can’t Lyme disease sometimes become on ongoing problem?
In rare cases, people who have been diagnosed with Lyme disease and properly treated have lingering symptoms, typically generalized pain, joint pain and fatigue. These symptoms have been interpreted by some to suggest the presence of chronic Borrelia burgdorferi infection.
However, an extensive review of scientifically rigorous studies and papers available to date, has determined that there is no convincing biologic evidence to support a diagnosis of chronic Lyme disease after completion of the recommended treatment.
There is no doubt that patients with persistent symptoms are suffering, but many report non-specific symptoms that also are associated with a number of other medical conditions. To be certain they receive the proper medical care, people who continue to have symptoms that persist after appropriate antibiotic treatment for Lyme disease should talk to their physicians about whether the original diagnosis of Lyme disease was accurate or if they may have a different or new illness."
Sounds to me like they don't beleive in persistent infection notwithstanding the evidence.
nothing very toxic about colloid silver! jah loves silver. there is nothing amazing about antiboitics except complete digestive failure. but i am willing to give the right mix a shot, ha. 4 years of mycoplasma hook a brother up. it's tuff here getting thru the $$ hustle of getting ill.
It may be old news (May 2008) the Connecticut Attorney General office:
"May 1, 2008
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter...."
Help! My LLMD has me on colloidal silver. Can someone please post some info about why it's toxic or not. I do not want to be taking this if it's harming me.
I would never prescribe it or take it. Do your own research. There are effective, science based treatments. You need to find out why your physician is recommending this therapy. As a general rule, heavy metals like gold and mercury are toxic. Silver may discolor the skin and can also have some neurotoxicity.
The first antibiotic for syphilis was made of arsenic. I wouldn't recommend this either.
Physicians may treat Lyme with CAM and marginal therapy to stay under the IDSA radar. It is unfortunate that borderline practices tend to be associated with immunity from Board actions. Physicians who use science based methods are targeted by Medical Boards.
I had the EM rash all over my body in 1984 and was diagnosed with a "blood infection."
In 1996 I had optic neuritis and a confirmed attached nymph tick. Lyme was suspected (after MS)and I was given IV antibiotics. I was well until last year.
A year ago in January I got very ill. The lymph nodes in my neck got very large and painful. One was removed and tested for lymphoma.It was sent to Mayo for a second opinion, but was pronounced negative.
I was exhausted,cold,and having trouble sleeping. I developed GERD and began to grow strange lumps/cysts under my tongue. The site where the tick bit me in 1996 began to grow scar tissue. The sides of my thyroid gland became tender, and I clenched my teeth so hard at night that my jaw hurt in the morning.
Around the time that I became ill, a cat scratched my hand. I only recall this because I got a pimple at the scratch site. I was tested for cat-scratch disease; it came back negative.
They tested my thyroid,and tested for "viral and bacterial" infection. All tests confirmed that I was the picture of health.
I was put on Lexapro for my "depression". I couldn't stand it and went off in August.
I have been getting a little better after 13 months.
I went to see a dermatologist to have the growing mass at the tick bite site removed. She turned out to be receptive to the idea that Lyme may recur, and she put me on a long course of Minocycline. (I don't believe she would admit it was to treat Lyme if she were asked.)I've been on it for 2 weeks.
I live in Colorado, and "there is no Lyme in Colorado" according to the 3 General Practitioners, the allergist, the ENT and the OBGYN I saw last year.
I lived in Minnesota when I had the EM rash in 1984, and found the attached 1996 tick on my back in Thailand.
The dermatologist will remove the growing mass at the 1996 bite-site in mid-April. Is there any reliable test that can detect Lyme in this tissue? Could you recommend a lab?
I am grateful for any suggestions.
I should have mentioned that I have had on-and-off bouts of "water on the knee" since 1985.
Would testing this fluid be more effective? How do I find someone in Colorado that is willing to do it?
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