Monday, November 10, 2008

Book

A patient brought me another Lyme book to look at. This one was written by a well known LLMD. It gives me pause. I am an allopathic doctor. Rather than defining what I am, this appelation says what I am not. I am not: an osteopath, an herbalist, a practioner of homeopathy or a doctor who specializes in CAM (complementary and alternative medicine). I follow mainstream medical paradigms. I treat diabetes with Glucophage, not dandelion roots. I generally work within a box of evidence based therapies and standard guidelines. As is the case with other allopathic physicians, I am afforded some lattitude to occasionally color outside the lines. It's OK to recommend Saw Palmetto for prostatism or St. John's Wort for depression. Now I treat chronic Lyme disease. It is a new world. I use principals of allopathic medicine, but I use them to treat an illness which itself exists outside the box. The ILADS box is ignored by "real" doctors for the time being. The ILADS guidelines look quite familiar to allopathic physcians. They are written in standard doctor speak.

Lyme treating physicians have a bit of an identity crisis. It seems most approach the disease through the lens of alternative, non-allopathic medicine. This is melded with a smattering of allopathic medicine. This leads to the confusion. Allopathic medicine and complementary, alternative medicine are two separate, distinct disciplines. I see chronic Lyme disease as a devastating epidemic of epic proportion. Based on the premises inherent to my underpinnings as a physician, I have an imperative to treat the illness based on the best scientific evidence utilizing reliable tools which have been effective for other illnesses.


Briefly, here is the story of a woman I saw today. She is in her mid 40s and obese. She came to my office three months ago. She was sent by other family members who had suffered with Lyme disease. She had been sick for more than a year. She had drenching sweats, foot pain,joint pain, body aches and flu like symptoms, brain fog and memory loss, numbness and tingling, impaired balance, urinary symptoms and profound fatigue.

Her labs were CDC positive for Lyme. Her B12 and folate levels were low. I prescribed Ceftin and Minocin and asked her to return in 3 weeks. She misunderstood me. Instead she returned in three months. Surprisingly, all of her symptoms had improved, including the sweats and the cognitive deficits. The standard paradigm would have suggested that she be treated for Babesia and ?Bartonella. Self proclaimed "Lyme doctors" who treat such patients would suggest that she could not improve without a plethora of alternative therapies, including: vitamins, supplements, life style changes, diet and exercise. In truth she ate poorly, did not take supplements and did not exercise. Despite this she improved rapidly.

The task before us- that is the task of understanding and treating Lyme disease is daunting. We are general physicians. At once we must understand the complexities of immunology, microbiology and pharmacology. We are at odds with experts who have forgotten more about these disciplines than we can ever hope to know. Immunologist can spend 5 or more years exploring this ever changing discipline and admit they are only scratching the surface. When iconoclasts, such as those of us who treat chronic Lyme disease, take on the establishment, we better make sure we are right.

I suggest: Avoid terms like LLMD and LAMP. Instead we should indicate that we are ILADS practitioners or IDSA practitioners. We should then indicate whether we are allopathic or alternative practitioners.

Patients need to know their options and understand the biases of their physician.
This book is full of useful and intriguing information and ideas. I am sorry to report that its author got some of the basics wrong.

I think it is improper to suggest that Lyme is transmitted by fleas, flies, gnats, mites and mosquitoes. Lyme is an aerobic bacteria, not anerobic, although it may live under microaeophilic conditions. This is not a trivial point. It determines which anti-microbials will be effective. Penicillins and Cephalosporins, just like Tetracycalines and Macrolides all penetrate mammalian cells. It is incorrect to claim that only the later two classes of antibiotics penetrate within cells. What is correct is that the first two classes of antibiotics may be ineffective against intracellular Borrelia organisms which become L-forms and shed their cell wall.

The immune system is extremely complex. This must be acknowledged when one entertains a discussion of its functions. Bacterial antigens are indeed processed by Macrophages and then presented to lymphocytes. Helper T cells (lymphocytes) facilitate the production of antibodies by B lymphocytes. These B lymphocytes can transform into plasma cells which become antibody factories. There are hundreds of cytokines which are involved in the function of the immune system. The Th1 and Th2 balance of helper T cell lymphocytes is an important part of immune function. Th1 activation is associated with inflammatory cytokines, but it also associated with the elaboration of endogenous peptides which assist in the killing of intracelluar pathogens, such as L-forms of Lyme. Immune cells do have endorphin receptors as mentioned. They also have vitamin D receptors(VDRs). Measurements of dihydroxy 1,25 vitamin D are in fact accurate. This form of vitamin D is the metabolically active form. Vitamin D OH 25 is metabolically inactive. Vitamin D dysregulation with increased active vitamin D does in fact cause a tilt towards the Th1 response away from the Th2 response. This is thought to be a mechanism by which intracellular L forms ensure their survival.

In my experience SPECT scans and MRI scans are very useful. A lumbar puncture does not support the diagnosis of multiple sclerosis as stated. I do not find this procedure to be helpful except in rare cases.

The CD57 test has not proved to be helpful in determining when antibiotics can be stopped. Many factors, including stress and cytokines affect the up and down regulation of this parameter(a subset of natural killer T cells).

There are in fact no "Lyme experts." Recommendations to administer Rocephin in 3 day boluses stem from the conjecture of one well known LLMD. The only evidence based medicine related to the use of Rocephin comes from the work of Brian Fallon at Columbia University. In his studies Rocephin was used continuously.

The IgeneX FISH test for Babesia does not test for multiple species as stated. It only tests for B. microti. A new PCR test in development by Clongen Labs will detect DNA found in 15 well categorized species of Babesia.

It is a stretch to suggest that TSH levels over 2.0 reflect low thyroid function. The consensus amongst physicians is that TSH levels up to approximately 4.5 are normal.

According to my allopathic bias, there is no basis, scientific or otherwise, to support the use of the many herbal therapies, alternative therapies or the value of the anti-inflammatory diet discussed.

My concern is that a focus on taking 15 herbs and vitamin supplements may detract from efforts to treat a serious infectious disease with hard hitting antibiotics.
Again, as I hope I have made clear: this is my bias. I ask other physicians to make clear from the start what biases they have.

I laud all doctors who are willing to take on an establishment which for whatever reasons, seems determined to fight our efforts to help our patients. I cannot say that CAM is ineffective. I can say that I personally have treated many patients who had previously received extensive CAM therapy without benefits. Many of these patients have responded very well to vigorous allopathic therapies.

6 comments:

Starlings Preschool said...

Thank you for putting your opinions out there. Would you be ok with my directing my LLMD to your blog? I think he would be interested.

Lyme report: Montgomery County, MD said...

I started writing the blog for my own "therapy."

It is on the internet and open to any interested parties.

I am willing to learn from others as well.

DocJen said...

I have been uncomfortable with the term "LLMD" for a long time. I really like your suggested "nomenclature" regarding allopaths v. CAM docs, ILADS v. IDSA docs. It's not the case that a white coat is a white coat is a white coat....

lymebytes said...

We all want hard science but don't have it. Replacing that with book after book on someone's latest diet, suggestions of needing a "higher power" and all of the alternative medicine just gives the IDSA ammunition. People buy the books out of desperation. As a patient having bought a few of these books I feel like I've been scammed. I too am thankful for the doctors who will stick in this and try to help but this type of book with others only leaves the patients more confused than ever. I too come from a hard science background and hope that we have some soon to write a real "Lyme Disease Treatment book"

Starlings Preschool said...

I, too, am familiar with the book to which you refer. I bought it hearing that it was uplifting, but upon reading it I realized that this particular "LAMP" probably does not treat very ill patients, as he basically says, if you do a + b, you'll get c.

None of his learnings I have found to apply to my own case. That's not to invalidate his practice, patients, or him. It just seems to me as though his patients are pretty straight up. For example, Levaquin to him seems the miracle. I did 4 months of Levaquin with no results. Long term Rifampin too.

ticktock said...

I know of 2 patients who were treated by the physician who wrote that book. Both left after saying they were pushed to spend large amounts of money of supplements sold there and IV treatments performed there. They could not afford them and were skeptical. I had that experience at an office that coordinates with him. I left quickly. Each relapsed badly. I think we must be careful because chronic Lyme patients are a vulnerable group, very sick and desperate for help. I appreciate a sensible approach that I can understand. I know that one day we will have some real answers and until then we just have to hang in there the best we can. If someone has the money and believes it helps then that is their business but I remain careful. Thank you LymeMD for not going in that direction. It would be easy to do.