Wednesday, November 19, 2014

Why your doctor does not believe in Lyme disease

In his new book, Dr. Horowitz gently discusses the issue. He talks about a paradigm change. This doesn’t answer the question for patients on a visceral level.

I surveyed some physician friend colleagues asked them if they can think of another disease that has been as divisive as Lyme disease.  They always come up empty-handed.  

Your doctor is being bashed by medical boards, ridiculed by other medical professionals, even shunned and ostracized and generally not having a good time (in some arenas, not globally).

You are angry, infuriated, incensed, bellicose or just pissed off. 

Patients new to this world all ask same question .Why?

There is a war going on. Years ago, I had a conversation with an infectious diseases specialist I thought it was collegial; at the end of the discussion I said “I guess we’ll just have to agree to disagree.” She said no we won’t and proceeded to report me to the Medical Board. Doctors don’t usually report their colleagues to Medical Boards. Most follow the rule, “people who live in glass houses shouldn’t throw stones”

Phenomenologically, Dr. Steere and is infectious diseases specialist saw a Lyme as a vectorborne illness causing joint pain or rash: something straightforward. Something easy to treat.

Phenomenologically, Dr. Burrascano and primary care colleagues, saw patients in Lyme endemic areas as poly-symptomatic; patients had every symptom in the book.

Dr. Steere, Dr. Burrascano, myself and likely all the physicians I can think of were taught that there is no disease that causes so many disparate symptoms. These has a “positive review of systems,” meaning they has a psychiatric disorder. Easy one.  

Lyme breaks the mold.

Dr. Burrascano and others thought all these patients cannot be crazy; something else is going on. The cohort of sick patients lived in rural areas known to have a lot of Lyme, they enjoyed outdoor activities, they had a history of previously treated Lyme disease, they had a history of tick bites, the had a history of rashes and summer flus, or they just had an insidious, progressive disease. 

First impressions are important. Dr. Steere’s first impression was that Lyme causes joint pain and is easy to treat.

Dr. Burrascano’s first impression was that these were very sick patients, commonly referred to a “train wrecks.” These patients got better when given antibiotics; symptoms returned when antibiotics were stopped; symptoms got better again antibiotics were restarted. The first impression was that Lyme is a complex multi-system disease which is hard to treat.

These two groups were describing something entirely different, something universes apart. Both were called Lyme disease. 

The war began. Steere  was reported to a Medical Board. Burrascano was doomed. Once the war broke out the truth didn’t matter. Since Steere and his colleagues are associated with Ivy League institutions they won the battle. They have created educational programs for doctors espousing their point of view point and ridiculing the views of the other camp.

I hop the answer to the big question is contained in the above narrative. 

In this war I see the IDSA crowd is calling lymies and their doctors crazy and “antiscience.”  Lymies believe the IDSA crowd is involved in some vast conspiracy. Get a grip.

It comes down to stubbornness, hubris and ego. They call me “antiscience.” A friend once told me: “watch what they call you; that is what they are.”


crf said...

Dr, I appreciate what you do.
there are so few.
and yes, hubris and ego.
but there is another part of this equation, and that is the power of the insurance industry, that has left many disabled.
and there is the bayh dole act, that made our gov agencies and their employees financial stakeholders in scientific ideas that may be limiting patient access to treatment.
it is unquestionably complicated by the dimension of ego, but it has an institutional component.
many thanks for what you do, and your brilliant mind, and willingness to share your knowledge.

Diana said...

I couldn't agree more with crf. There are other factors also:
* State and Federal governments have hundreds of thousands of employees at very high risk of Lyme disease, those employed in fire control, forestry and the State and National parks.
* State and Federal governments are the major underwriters of health insurance through Medicare and Medicaid.
*Federal government underwrite Social Security disability.
By sweeping this problem under the rug and championing the Steere camp governments stand to save millions.
I don't really think physicians, even Steere and his camp, have a great deal of power when it comes to dictating matters that have such enormous financial consequences. They have merely been recruited, and for them it IS ego, but it is truly about money.

Lyme report: Montgomery County, MD said...

It has always been my intention to be apolitical. nonetheless, I feel the need to throw my hat into the ring.

It is hard to believe that the mess is the product of the minds of a few old men. The Harvard, Hopkins etc. crowd live in a bubble. Their beliefs are reinforced because like minded colleagues think the same way. No Harvard professor wants a legacy of disaster. Such types are beholden to no one. There are not lackeys. Allen Steere does not want to go down in history as a hated figure who cost many people their lives and caused untold misery and disability. He wants to be remembered as the hero who saved the word from crazy Lymies.

The cost issue does not hold water. It would be cheaper to treat thousands of patients misdiagnosed with: MS,lupus, fibromyalgia, CFS etc. if they were instead diagnosed with and treated for Lyme disease. Insurance companies want to spend as little as possible, so of course the ride on the coattails of the IDSA. The IDSA drives the entire machine, led by a few stubborn old men. Steere and his camp have all the power. Folks at the CDC are IDSA members and drink the same cool-aid.

It is hard to believe that a few can wield so much power: welcome to American Medicine.

When the concept of evidenced based medicine came to the fore in the 1990s, insurance companies saw it as a way to save money; Ivy league institutions like Harvard saw it as a way to consolidate power and control, based on ego and arrogance. This control is intellectual control. They want to tell the peons of doctors how to behave, after all they know what is best.

The concept of peer reviewed literature sounds good; but in truth the peers are cronies who cover for one another. This is a corrupt system.

Evidence based medicine to a very large extent depends on the opinions of expert panels to decide optimal care. Enter IDSA guidelines, 2006.

It feels like a conspiracy of untold magnitude. The government. The CDC. The insurance companies. Acting together in some diabolical plot.

I am afraid the explanation is more pedestrian.

Many think the CDC can't be that stupid. Some people would rather live in a country in which the CDC is all knowing but acts diabolically.

Actually, the CDC can be that stupid, and it is that stupid.

If you haven't noticed, the same is true for other branches of the government.

If anyone should be paranoid it is me, constantly under the eye of the Medical Board. Docs (for the most part) on the Board are good people trying to offer a service. Few are malicious. They are unduly motivated by the IDSA and its brainwashed clones.

Docs on Boards get riled up by IDSA academic types who fill their ears with dreadful information.

IDSA misinformation is like a virus infecting the body of the collective doctors in the US (and elswhere). The virus, could be Lyme, has insinuated itself in every organ in the infected victim.The damage is widespread. The patient is very ill. This is the enemy which must be driven out.

crf said...

I dont think it is a conspirancy as much as a convergence of interests. Cdc and fda officials who want to finish a career at merck or baxter in the vaccine division for example.
and as for insurance costs, in pam weintraubs cure unknown: "the cdc's unpublished school study said it all:treating a case of late-stage disseminated lyme disease could cost $100,00. And as in our family, where one lyme patient existed, a sibling or parent who'd dabbled in the same ecosystem and was likewise infected might not be far behind".
The immediate burden to the system is always a stronger political force than tha long term.
during the aids crisis fda sided with blood banks against testing blood donations because of the immediate costs
I think we may have to respectfully agree to disagree.

Diana said...

$100,000 wouldn't even come close to the costs I have incurred over the past 27 years that I have had Lyme. I had good insurance when I was diagnosed, and spent at least that much in the first three years myself for tests and treatments that insurance didn't cover. My illness (and I am a physician myself) has eaten up virtually all the money I have ever earned. I am fortunate in that being able to manage my treatment myself to some degree I have been able to continue to work, although not in medical practice any more.
I agree with the 'convergence of interests'. Steere may appear to have all the power, but only because it is being handed to him and he is being given a voice. Of course he doesn't want to go down in history as a hated figure, but why is his position on chronic Lyme supported by CDC and the popular press, and little is heard about the host of research that indicates late stage Lyme as a chronic infection?

lucyinskyw/lyme said...

--Actually, lately, the all-famous Alan Steere appears to place the burden of the blame upon the poor oak trees, and their overabundance (in some years) of those cantankerous acorns...Then the mice come along and breed like mad for there is oh so much to eat....Meanwhile, the birds are EVERYWHERE, and he never seems to go there! Although, I will say that in an 70s paper written by the early Yale camp of Lyme "researchers," (of which I can dig up upon popular request), our feathered friends are given a slight nod at the end of the early white-footed mouse explanation, as a potential transmitter through their interstate-travels...I've wanted to shout to the world that they understood the bird-component then; yet, we never hear them refer to that FACT now...

Lyme and Company said...

Such a wonderful post, Dr. And such great comments—I agree with all the other readers, here. My additional thoughts:

The CDC has recently launched a campaign that does nothing other than exacerbate the current storm, fueling a fire against overcoming the ridiculously failed lyme diagnostic and treatment protocol. Why? Follow the money…

Our tax dollars were spent to create a marketing campaign featuring one guy who was diagnosed with lyme yet later found out he had a life-threatening tumor. He sought appropriate treatment and lives to tell the tale against lyme.

What his anecdotal experience has to do with the other million people who have lyme and aren't getting dx or tx properly is irrelevant, because that is not the CDC's interest. And let us take one of his statements, "Had I been diagnosed sooner, I wouldn't be going through what I'm going through right now." I hear ya, dude. So do the million+ people suffering needlessly. MANY of those people have lyme. All other conditions are being taken seriously and being treated with gusto. Except lyme and co-infections.

This is mind-bloggling that tax-payers are funding this type of convoluted marketing. And the CDC has no business getting involved in promoting health issues like this—they are a reporting body for trends in health occurrence or in other words, reporting on disease stats.

I was on the fence about a conspiracy—and from various statements I've read, I really don't think there is a bonafide, broadly based conspiracy because that would take far too much coordination. Instead, I think it is a shocking combination of a perfect storm:

- a completely overwhelmed medical industry, several cultural trends that put Big Pharma in control of the government, the insurance companies, RESEARCH, the entire medical industry and our fate as patients.
- Certainly the carelessness of the biochemical weapons research played a role.
- And all this crashing into global climate change that has allowed these species to mutate and spread.
- And out dated notions that it's only a problem for certain geographical areas certainly gets no one's attention. The timing is absolutely horrible for us.

I agree with all the statements made here by commenters—there are many factors influencing this mess. But I seriously doubt there is any faction in government or in the medical profession capable of organizing a broad conspiracy. We will limp along until major changes can be made and will rely on specialists like our good doctor here, microbiologists like Holly Ahern (listen to her fantastic interview here:
… other intelligent and diligent proactive patients and supporters like the good readers here, and changes at grassroots level.

People are healing from lyme in spite of all the forces against us. And many of us, once healed, will be strong enough to move some mountains against this travesty. I'm not afraid of any medical board. I had nothing more to lose.

I think there is no coincidence that the progress made at the state levels (and Canada!) in loosening the punishment for alternative care has spooked the powers that be (prompting this suspicious CDC campaign). I want to know where the grant money came from for this ridiculous campaign. Follow the money…