Tuesday, March 3, 2009

Chronic Lyme disease- The debate- Rephrased

Lyme disease symptoms can persist after IDSA recommended antibiotic therapy.
The argument that this represents a post-infection syndrome rather than a continuing infection has become the crux of the debate as framed by the IDSA.
This disagreement is really a sidebar. Let us put this particular discussion aside for the moment and look at things from a different perspective.

Across the board, physicians agree that late disseminated Lyme disease is a real entity. The IDSA argument claims that MOST Lyme patients present with an acute easily discernible syndrome. The IDSA would agree that some patients with well documented Lyme disease present differently.

Let's look at a comparison with syphilis once more. Syphilis starts with a painless lesion in the genitalia, called a chancre- the acute syndrome. Many patients with syphilis can recall no history of such an exposure. For decades syphilis has been called the great imitator. It has the ability to disseminate widely after a quiescent stage and mimic many other medical disorders. We know that syphilis has 3 stages. In the second stage, years or decades may pass without the appearance of symptoms. When syphilis finally shows itself, stage 3, we can see a devastating, multi-system disease. We know that late syphilis of the brain and central nervous is frequently associated with dementia and death and that no satisfactory therapy is reported in current medical literature/guidelines.

Lyme is now referred to as the new great imitator. Does initial Lyme infection always cause features consistent with an acute case? Clearly the answer is no. The most common vector is the nymph forms of the hard body Ixodes ticks. These tiny arthropods are the size of a poppy seed. They are stealthy vectors, and more often than not are unobserved by their victims. Many patient do not develop the tell tale rash. There is some disagreement about the frequency of EM rashes, but there is no dispute that they are absent in some or many patients. Bites frequently occur in areas which are hidden, for example,the back of the neck. If the classic rash does occur it can easily be missed by the patient. Some patient, newly infected with Bb develop acute flu like symptoms; but as we have seen, such symptoms are frequently dismissed as viral.

Lyme may enter into a prolonged asymptomatic phase, just like syphilis. These latent spirochetes can quietly disseminate. Symptomatic disease may not appear for many months or even years. A great imitator like Lyme disease can cause a protean array of symptoms and syndromes. This may be a point of disagreement between ILADS and the IDSA. This dispute can also be put aside for the moment. There is no debate that Bb is very neurotropic: It has a known proclivity for infecting both the brain and nervous system.

Penicillin treatments for neurosyphilis are known to be unsatisfactory. The treatment of established spirochete infection in the brain is known to be very difficult.

Many late stage patients with Lyme disease present with neuroborreliosis. This is clearly established and accepted by all groups familiar with the disease, irrespective of their IDSA/ILADS bias. Neuroborreliosis patients have concrete, object findings: Alterations of mental status, abnormal MRIs and abnormal SPECT scan. Forgive my verbiage- It is "no brainer".

Fallon has shown: patients with neuroborreliosis improve with IV Rocephin. The improvements regress with cessation of therapy. The improvements return when therapy is started again. What does this tell us??

I don't think you have to be a physician (or a rocket scientist) to imagine what might be occurring here. The antibiotics temporarily keep the infection at bay- patients improve; antibiotics are stopped- patients worsen- because the offending germs have not been eradicated. Fallon did not continue patients on oral antibiotics when the IV Rocephin was stopped. Many LLMDS, myself included have found that this approach frequently maintains the improvements gained from Rocephin. This begs the question: Why is there a controversy- at least regarding documented neuroborreliosis.

If something is working why stop therapy ? Why is this considered good medicine?


Moosie said...

Hi Doc,

Nice post, and I appreciate your effort to sidestep and get to the point where IDSA can't disagree with the basic issue.

You ask: "This begs the question: Why is there a controversy- at least regarding documented neuroborreliosis."

I have neuroBb, and had a rash, abnormal SPECT, LLMD and neuropsychologist confirm lyme-relate neuro issues. I'm currently extremely disabled, yet I can't convince non-literate docs (including the ID doc at our local hospital in CT), or insurance companies, that I have a bacterial illness. They talk of psychiatrists and therapy. I HAD lyme, but it was CURED with 3 weeks Rocephin. Not so.

So, isn't your fine argument going to suffer from the same kind of schoolyard "I know you are, but what am I" kind of non-logic?

Lyme report: Montgomery County, MD said...

The truth does seem obvious. Some physicians seem to have become automatons, having lost the ability to think critically. I personally see this as an ill of our society. Very few individuals possess the ability to reason in a logical or critical manner. Our education system does not promote this most important skill. Medicine is to be practiced by physicians- hopefully thoughtful and skilled ones. If insurance companies are going to take over and set all the rules then I would rather go fishing. I love fishing- but that would be an incredible disgrace.

You will have to be proactive to be treated appropriately.
Get another opinion- go to another doctor or state- what is your life worth?

Seibertneurolyme said...


Hubby has been in the same boat as you. Neurologists say his abnormal MRI's are not significant since he does not have MS or a tumor or any recognized neurological disease. They also say that a brain SPECT is only a functional test and doesn't prove anything.

And to top it off I have had hubby in several different ER's and hospitals where they missed his encephalopathy. I had to repeatedly tell them he was confused -- he didn't know his name or my name (we have been married for 16 years). But he was talking and making sense -- unless they asked him direct questions they totally missed just how confused he was.

I hope you have a spouse or family memeber or friend who can advocate for you because a sick person on their own is at a great disadvantage.

Moosie said...

Hi again Doc,

Thanks for the reply. I am being treated. I'm under the excellent care of your peer Dr. P. who you mentioned presented at ILADS last October. It's taking time, of course, but I couldn't be in better hands, IMO.

I appreciate your blog. I haven't written to anyone in Maryland about your case as I live in CT. Could you offer some links, and perhaps the few key points you think someone from out of state, who's not your patient should address? It would give me a starting point.

Thanks again.

Katie said...

Wow, what a find this blog is.

I have had neuro lyme for around 10-11 years now with ongoing treatment(fluctuating)for around 9 of those years. I have seen all the tops docs but since none were/are "specialists," obtaining IV meds from my insurance companies was impossible(even with an attorney)over the years and oral antibiotics only made me far worse-for months on end. I FINALLY received IV Rocephin two years ago and after 9 weeks began to feel better. Unfortunately at week 11, I had to have my gallbladder removed due to the sludge that resulted from the meds. Shortly thereafter I got pregnant with my second baby so treatment discussions stopped until now. My question for you is...after reading Fallon's study results (several months ago), how do we know how much(in terms of duration) IV therapy is enough? Is 6 months enough? 12? Therein lies the $64,000 question, I imagine.

I'm just now 37 with 2 beautiful daughters that keep me alive and fighting. Though I must admit, it's not been easy.The past 10 years have been absolute hell. I am now fortunate to have an infectious disease doctor(after many, many years) who is willing to treat accordingly.

Thanks for taking the time to blog your experiences. It's appreciated on so many levels.