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Monday, November 23, 2009

Why doesn't my doctor believe in Lyme disease?

Scientists do research. They work in labs, at Universities. They work with bugs and test tubes; develop hypotheses, and design experiments to prove or disprove their theories. Sometimes they do basic science research-- to discover the basic structure and function of things. They publish their findings in prestigious, peer reviewed journals like Science and Nature. Such scientists have discovered much about the spirochete, Borrelia burdorferi, the causative agent of Lyme disease. This data is called "in vitro." Many doctors will claim that such results may not apply to the "in vivo" processes inside the body.

Physicians do not read these journals. They operate in parallel. They also have hypotheses. They evaluate their hypotheses with controlled clinical trials. Frequently medical trials provide confusing and contradictory data. In such cases the investigators can draw varying conclusions, sometimes informed by pre-existing biases.

Physicians(practitioners) are not scientists, although some may disagree. There are a few exceptions to this rule. Physicians work within the box of their trade. In medical school they are busy learning basic rules: structure and function of the body, types of disease--causes and treatments. Much of this is complex and ever changing. Evidence based medicine has helped physicians develop protocols and algorithms. The evidence is based on an analysis of the published studies in prestigious journals such as The New England Journal of Medicine and others. At times there is no or little data to support diagnoses and therapies. In such cases a body of "experts" informs the public of physicians regarding the best diagnoses and therapies. Even where no "science" exists, these opinions are surrogates for "science" and become-- "evidence based medicine." The waters are muddied. The distinctions between fact and opinion can become blurred.

The field of medicine is vast. It is broken down into various boxes. Some of these would include disciplines such as: internal medicine, orthopedics, rheumatology, neurology and infectious disease. (Of course this is a tiny selection of medical specialties for purposes of this discussion).
Perhaps readers do not know that all infectious disease specialists start out as generalists--internist or pediatricians, followed by a 2 year fellowship in infectious disease medicine. An infectious disease doctor has done: 4 years of college, 4 years of medical school, 3 years of residency and two years of training in infectious diseases. Note: for the first 11 years, the internists or family practitioner has had basically the same training as an "ID" doctor. Infectious disease doctors see sick hospital patients. They familiarize themselves with a wide range of esoteric infections: bacterial, viral, fungal, parasitic and others. They learn by reading text books, rounding with mentors and performing consults on sick patients, generally in hospitals. They spend very little time in an office setting. They become experts. They do not treat patients with chronic, "low grade" illnesses. They do not treat patients with fibromyalgia, depression, chronic fatigue syndrome and a whole other array of syndromes which they sometimes like to diagnose (in lieu of Lyme disease). Of course, they were generalists before they became specialists.

Each specialty has its own box. It works from a list of common diagnoses. Keep in mind--if you are a hammer, everything looks like a nail.

For example, a patient has joint pain. The orthopedist considers: tendinitis, a torn cartilage, a ligament injury, a mechanical injury--or something--not in his specialty, requiring referral to another specialists. The patient may be referred to a rheumatologist who considers: rheumatoid arthritis, lupus, Reiter's syndrome, post-infectious arthritis, gout and Lyme disease and others. He may conclude it is not in his field. He may refer on to an infectious disease specialist where considerations may include: an infected joint with something like gonorrhea, viral synovitis and perhaps Lyme disease. The Lyme results are negative for Lyme by the IDSA /CDC screening test. No answer is found. The patient is referred back to his primary care doctor. Physical therapy and pain medicines are recommended. If the patient asks about Lyme disease he is told this has already been excluded.

Lyme disease--LLMD style-- is outside the normal boxes. It is rejected by practitioners of the traditional boxes. It is foreign and rejected. After all, the true experts have spoken. These new practitioners outside the box, are easily labeled quacks. Paradigms do not change easily.

And in a nutshell, that is why your doctor does not believe in Lyme disease.


Treya said...

Great post! Thanks.

Anonymous said...

Very well put

Max said...

I would put it more bluntly and cynically : in every field there are narrow minded ,short sighted and ignorant self serving "experts" .

More regulatory bureaucratic boards and agencies regulate the field the worse it usually is . Medicine is a perfect example of a such a field. They are more concerned of keeping the status quo intact which provides a huge amoutn of income for AMA doctors, insurance and pharma companies. They have de fact monopolies on how people can get treated

They are not interested in patients health - regulatory boards and organizations (by their own nature -not by some conspiracy) are naturally interested in only ever increasing regulatory powers . The other side is only interested in ever increasing profits -working in tandem they achieve that goal. One side gets ridiculous profits by gaining monopoly ,enabled by regulations of other side

that would be me said...

I just found your blog and have been catching up on your posts. Thank you for revealing your frustrations, your knowledge, and your drive to help those who have fallen into this medical abyss called Lyme. I will be reading from hereon with great interest.

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Anonymous said...

I just want encourage all Docs to keep fighting for us Lyme Patients we love you for you courage to help us. We are so sick and Late Stage Lyme is a living nightmare, this a little poem i wrote about Lyme literates you guys are Hero's.

nancy said...

I lived in Ct for 35 years, 8 of them near Old Lyme. I had severe Lyme for 15 months, went thru many, many expensive (to me - no ins @ the time). All results were neg except for a pos "Lyme test". I was treated w/2 months of doxy. and told that I was "over" Lyme Disease. I have since (in the past 18 years) been dx w/fibromyalgia, chronic pain syndrome, osteoarthroritis, high thyroid and low thyroid (from bloodwork), chronic depression, GERD, Meniere's Disease, tachycardia, peripheral neuropathies all four,and the list goes on. Recently I had another EMG with a neurologist I had not seen before. After testing me he said that I didn't need all of those diagnostic labels - just say that I had chronic Lyme Disease....

Anonymous said...

sorry Nancy but Lyme is very persistent hard to diagnose and hard to treat because it is a very tricky Disease. Many Lyme patient relapse because they never were treated right in the first place and some Docs believe untreated Lyme turns into things much worse.

MJ said...

It is so weird... I just called to an office of "Infectious Disease Consultants", and I asked which of their Doctors treat Lyme Disease? the answer was, "none of them do." I was so shocked I said, would you mind if I ask why? she said: "No idea why, I just know they don't".

These is a group of Physicians from different parts of the country, some with specializing studies done in South America...
They just don't treat the very first most infectious disease of this Country, just not, punto!

Unknown said...

Happy holidays for everyone!
Doctor when eve you can, would be interesting to hear what to do with "Lyme Carditis"? I think it is the most difficult symptom...

Unknown said...

Very Nice Stuff!!

Unknown said...

I think this best article about Lyme disease. Being a Lyme disease doctor I can say this because there is lot of information about Lyme and its causes.

Douglas said...

I have a bad case of Lyme and 12 other nasty bugs that were not found for over 4 years. In and out of hospitals. ACTUALLY physically thrown out of Sedona Hospital. Not one doctor, including an Infectious disease doc ever tested me for any bacterial or viral infections. Finally a natural path doctor found it right away. Lyme and 12 other nasty diseases. All found at Igenix labs in Palo Alto. I took these tests back to my infectious disease doctor who still refused to admit I had Lyme. Since my AMA trained doctors refused to admit all 12 infections existed I had to pay for treatment out of pocket.. Over $130,000 of my own money!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Since these "idiot AMA trained docs never found all these bugs, it took another 4 years of suffering and severe permanent damage to my body to find out about these infections. I now have severe peripheral neuropathy. I do not have much of a life. I cannot go out for more than an hour, since my symptoms are so severe. Most of my day revolves around treating my symptoms. I have little social contact, even with my family. No one wants to watch anyone with so much pain. I just wanted to say to these AMA trained doctors and emergency rooms in Arizona. FUCK YOU