Friday, January 23, 2009

Lyme and the CDC: A tangled web

A 50 year old male came into my office in March 2007 to inquire about Lyme disease. He had been referred by anther patient. He had previously been diagnosed with fibromyalgia, depression and other ailments. He is an outdoors man and recalls many tick bites over a period of many years. His illness became pronounced in 1994, but in retrospect had been ongoing for at least 20 years.

He complained of arthritis, sleep problems, severe cognitive impairments, weakness, a loss of coordination, a loss of balance and diffuse muscle pains and restless leg syndrome.

His previous physician had treated him with the antidepressants Wellbutrin and Elavil. His examination showed evidence of sensory peripheral neuropathy. Initial screening blood work was normal. His "Western Blot" for Lyme with a "mill" lab showed a single IgG band in the 58 position.

A brain MRI showed white matter disease. Based on my experience with many similar patients, I felt he had chronic Lyme disease and presumptive neuroborreliosis. The medical literature is replete with information regarding many well documented cases of seronegative Lyme disease. Today's IDSA/CDC crowd makes that claim that not only is seronegative Lyme virtually non-existent, but seropositivity is narrowly defined by the two step ELIZA/Western Blot test. History has been re-written. The CDC has repeatedly stated that this test is for surveillance/epidemiological purposes, not diagnostic.

This patient had a good clinical response to oral antibiotics. Virtually all of his presenting symptoms improved- except the cognitive impairments. These were marked and threatening his professional and personal life. He had short term memory loss, word finding difficulties, episodes of confusion and disorientation and an inability to concentrate. His depression and mood swings were marked.

By February 2008 he was about 50% better overall. Cognitive symptoms had not improved. A Lyme Western Blot performed at IgeneX showed positivity at bands: 18,34,39,41. He was CDC and IgeneX positive. I have found no literature which discusses the issue of Lyme seroconversion. This phenomenon is well known to physicians who treat Lyme disease. It is not discussed by the CDC or in IDSA guidelines. The CDC still maintains that a positive test is based on the two tier test or now- a Western blot showing 5/10 IgG WB bands. Those of us who treat chronic Lyme know three things: The two tier test is inaccurate, A direct Western Blot which incorporates IgG is unhelpful since the vast majority of seropositive patients have IgM responses only and many patients who test positive for Lyme only do so after Herx responses folowing antibiotic therapy. The IDSA does not address the existence of Lyme related Herx responses. IDSA physicians I have spoken with claim that seroconversion has no meaning; they believe it represents a false positive response. It is also trying(to say the least) that the CDC has failed to inform laboratories and physicians what a positive Lyme CDC test means- despite congressional instruction to do so in 2002- signed into law by President Bush. At the present time, every mainstream infectious disease specialist, neurologist and rheumatologist I interact with has mistaken beliefs about the meaning and use of this test. Furthermore, they believe that my interpretations of Lyme tests are tantamount to quackery.

A SPECT scan from June 2008 showed decrease perfusion to the frontal and parietal lobes in the brain. The Lyme denialist camp has claimed that SPECT scans have no validity. This denial is made in the face of evidence based data from Columbia University. This patient received a 5 month course of intravenous antibiotics, ultimately including Zithromax and Flagyl added to Rocephin.

His response was nothing short of spectacular. All of his symptoms, virtually 100% are gone. His mentation is perfect. He has not functioned physically or mentally this well in over 20 years. He is weaning of his antidepressants. His mood is normal.
His remission is maintained with oral antibiotics.


Tom P said...

I've been reading this blog for about a month now. I have to say that I find it very helpful and informative, and agree with mostly everything that you write. I'm recently diagnosed, (10-08) for lyme and am thought to have been infected for almost a decade. I must say how great it is to read stories like this. I am not as sick as many who have been infected for only year though. Most of my symptoms are neurological, with some minor joint pain, and minor nerve damage. The man who was the subject of this post, you mentioned the last of his symptoms to disappear was the neuro stuff. And it finally did after IV treatment. Does this mean that the white matter legions were also gone? I ask about that because although I've yet to have a brain MRI, I'm guessing I probably have some of that "white matter disease" going on and its probably the cause of my cognitive problems. In other words, does a return of normal cognitive abilities mean that white matter has healed? Is that possible?

Paula said...

Tom P - how were you diagnosed? I am currently being treated for CFIDS, and all Lyme tests have come back neg. Did you test pos, or was your diagnosis clinical??

bitten said...

You know that my case is well documented. I had two bullseye rashes, worked in forested areas daily in an area where Lyme is an epedemic and clinical symptoms down the line. With these factors, I was diagnosed positive for Lyme Disease by an IDSA doctor and I did meet the CDC guidelines for an IDSA doctor to diagnose me positive even though I was seronegative until I came to your office; well over a year after I had the bulls-eye rashes. As you know, with a high dose antibiotic challenge I did "sero-convert" and remain positive on WB tests and a PCR test of fluid from swollen knee. I cannot be the only one but my case is well documeted even having a letter from the IDSA doctor to my lawyer stating that I had Lymes disease and was diagnosed positive due to the above signs and symptoms.
If I had not had the rashes then who knows what might have happened but, since I did, IDSA doctor could diagnose me as positive for Lyme. Yes, this is a terrible mess for so many. Let me be an example to help get documented proof that they are incorrect.

bitten said...

I forgot to say that I have often thought of going back to the IDSA doctor with my positive lab results. When she took them they were negative and the reasoning she wrote down was that it was probably too soon after initial infection for a positive test. Of course they were redone by an ILAD doctor about a year later and also came up negative, completely. It was not until I came there and had high dose antibiotics that I did test positive both by CDC and IgeneX standards. That says a lot.

bitten said...

Also forgot: LymeMD I did not only test positive on IgM but also IgG and had never tested positive on either before. I believe we should work on that paper. I still get IgG and IgM responses-don't forget- and positive PCR

Tom P said...

I guess i'm one of the lucky ones then, in some ways anyway. I presented with a textbook EM, and tested positive for IgM by CDC standards. A month later after the 3week doxy course,I saw a self proclaimed "Lyme&Bartonella&babesia worlds formost expert," who said the EM I had was definately a recurrance of spirochetes in the skin, due to the fact that within 1 week,(the time it took to get to the doctor after calling and reporting the bullseye)there was already another EM about 12 cm in diameter in another location. The "LLMD" also dignosed me with Bartonella from clinical symptoms...

bitten said...

lymemd: Same IDSA doc treated co-worker. Same symptoms as me: rash, work & flu symptoms but negative tests. She diagnosed Lymes Disease. After some antibiotic treatment (he waited longer) he tests positive; after diagnosis. Dr. P.

bbatson said...

so what exactly do doctors do with this information that conflicts with the cdc?

Do you guys send this to them or what? I don't really understand where all this lyme info goes.

Does it just stay in your records?

thanks for answering in advance.

Paula said...

Bitten - did you have any bands show up before the abx? I'm just trying to see if I need a new Dr. to do a clinical diagnosis and try the abx.. thanks..

PatJ. said...

To hear the response this patient had to the antibiotic treatment! God bless you for trying!!! Soo happy for him!!!! hope he is trying to get others helped too!!!
I do not understand why the organizations try to demonstrate things that go against of the sick person; denying it means not helping, means going backwards, means negligence! May God help us having these "wises" in power.
I have an amazing response to antibiotics; but Doctors believe it is a coincidence..! what a joke ah?