Friday, January 16, 2009

Muscle disease/neurologist/CDC

I am always thrilled to see patients walk into my office with classic signs and symptoms of chronic Lyme disease. I am not always that lucky. More patients have been presenting with atypical syndromes. A 40ish year old man has complained of muscle pain and fatigue after limited physical activity. This has increased over the past one year. He has been a life long athlete. Every time he exercises his muscle enzymes(CPK) become very elevated. After some rest the enzyme levels return to normal. Recently, he has experienced low grade, persistent pain in his muscles without weakness. He has also experienced some fatigue and numbness and tingling.
There are well documented cases of Lyme disease causing myositis (muscle disease).
His Lyme WB shows 4 IgG bands and meets the IgeneX criteria for Lyme exposure. His excellent neurologist has done a thorough job of working him up. He has been unable to establish a diagnosis. He has referred the patient to Johns Hopkins for a muscle biopsy. He asked the neurologist if his symptoms might be due to Lyme disease. He showed the WB report to the neurologist.

The neurologist with whom I have been friends for over 20 years said "Dr (me) is a nice guy, but I don't what is wrong with him. Over the past several years he thinks that everyone has Lyme disease." The neurologist informed the patient that he has only 4 positive bands and that the CDC required 5 bands for a positive diagnosis- case closed- he does not have Lyme disease.

In 2001 the "Lyme Disease Initiative of 2001" was introduced in the House of Representatives. H.R. 1254 was passed. The stated goal was "To establish a program to provide for a reduction in the incidence and prevalence of Lyme disease." The Bill called for the creation of a LYME DISEASE TASKFORCE (sec. 4). Based on this bill a task force was created. Public Law 107-116 was passed by the senate(11/06/01) and was signed into law by president George Bush on January 10, 2002. I quote a portion of that bill:

The Committee is distressed in hearing of the widespread misuse of the current Lyme disease surveillance case definition. While the CDC does state that 'this surveillance case definition was developed for national reporting of Lyme disease: it is NOT appropriate for the clinical diagnosis,' the definition is reportedly misused as a standard of care for healthcare reimbursement, product(test) development, medical licensing hearings and other legal cases. The CDC is encouraged to aggressively pursue and correct the misuse of this definition. This includes issuing an alert to the public and physicians, as well as actively issuing letters to places misusing the definition.

Not only have these recommendations been ignored, but the misuse of the CDC test has become more ingrained in medical institutions and academic medical practice.

Neurologists may point to the new guidelines developed by the American Academy of Neurology. These guidelines are a repackaged version of the disputed IDSA guidelines. Three coauthors, including the lead author were also authors of the IDSA guidelines!

I do not know if this patients signs and symptoms are related to ongoing infection with Lyme disease- but it is a distinct possibility. Unfortunately suffering patients frequently find themselves caught in the cross fire between the two waring factions. I am afraid it is ultimately the patients who suffer in this situation. I will request that the muscle biopsy specimen have a good Lyme PCR and sensitive culture on special media. Unfortunately, such requests from me have always been ignored.


bitten said...

I have never met a doctor who is familiar with the Federal law Bush signed. Once again, as patients, if found in the position this man was found in we must say (and I have said this to a doctor) "You know that by Federal law you cannot use _____ for diagnostic purposes" You have to put it in their face. They may not know about it but it will let them know that you know a lot about Lyme, symptoms, legislation, ect and the doc may dump you but at least you have stood up for yourself. Everyone read the Public Law LymeMD cites and USE it when a doctor is 1- not believing you 2- belittling you or your doctor 3- any reason you need to. I do not know if doctors do not know about this bill or they just ignore it but we patients need to use all we have at hand and this is one tool. Its a fight.

Thank you LymeMD again for believing in us, being an ethical doctor and a decent person. I hope you can stand up to the stress. We will help as you have helped us.

Paula said...

I am new to this. Been diagnosed w/ CFIDS - high EBV levels. I just don't buy that it's the whole story - too many neuro symptoms. Can anyone tell me of any neuro symptoms that might distinguish Lyme from CFIDS. My Dr. says it's all the virus. hmmmm....

Lyme report: Montgomery County, MD said...

It is a lot like the story of the three blind men. It depends which part of the elephant you feel.

Doctors want to neatly put everything into one box.

The reality may be a bit more sloppy.

Could be: CPN, Myclplasma, EBV, HHV6- or none of the above.

Your doctor need to consider all the variables, and then perhaps admit he is not sure- and then discus either further diagnostic tests, treatments or second opinions.

Claire said...

I have resorted to keeping a copy of US Public Law 107-116 in my daughters medical file. From the look on many doctors faces, I can tell they have NEVER seen or heard of it before.

Doc, my daughter is undergoing a muscle biopsy in 6 weeks, her Neurologist is convinced that she cannot be as ill as she is from a "bug bite." Even though she tests CDC positive.

Where can I tell our doctor to send a sample of this biopsy (If they would be so kind to do it..) Igenex or Clongen? Or is there somewhere else you recommend?

Thanks in advance.

Lyme report: Montgomery County, MD said...

Samples can be sent to top notch institutions for a pathological evaluation, but a sample should also be sent to a lab like Clongen for PCR testing for Lyme and Babesia and B. duncani. I am sure that IgeneX could do a good job as well.

Anonymous said...

Exactly the same, bitten 2006 as evidenced by bulls eye rash, mercy doctor in Portland Maine wouldn't treat as elisa negative. Told me lots of people get rashes. I had no idea. Eventually, muscle pain/weakness bad in 2009, elevated creatine after exercise. neurologist could visibly see twitching, defined as healthy. muscle biopsy 2011, normal. Seeing a specialist through Columbia. Why won't mainstream medical believe this?