Friday, May 30, 2008

What is Chamydia pneumonia, CPN, and what does it have to do with Lyme disease?

What I have not yet discussed is the controversial notion that Lyme causes "everything." Well, not everything, that's a slight exaggeration. This version of the Lyme paradigm suggests that chronic fatigue syndrome is really Lyme disease. Fibromyalgia is really Lyme disease. Lyme infection triggers autoimmune disease in persons who are genetically inclined such as MS, Lupus, and Rheumatoid arthritis. And many are convinced that Lyme is the key to Alzheimer's disease. Their are a group of physicians who are doing parallel research. They believe that Chlamydia pneumonia, or CPN, is the cause of everything. This group of devotees believes CPN causes fibromylagia, chronic fatigue syndrome, Alzheimer's disease and a host of autoimmune and chronic inflammatory disorders. These two infections intersect at the word L-form. Both exist as intracellular organisms called L-forms. CPN has a 3 phase life cycle which is somewhat reminiscent of Lyme. CPN is very hard to kill. Studies show that it takes months or years of combination antibiotic therapy to eliminate this organism. CPN is ubiquitous. It is common respiratory pathogen, not to be confused with its cousin Chlamydia trachomatis, a sexually transmitted pathogen. Most of the research on CPN has been done at The Vanderbuilt School of Medicine. The chief expert in this area is Dr. Charles Stratton. Dr. David Weldon, a researcher and clinician in England has provided compelling evidence showing a link between CPN and MS. He reports anecdotal evidence of his success in treating MS patients. More startling is the work of Dr. Martz, a victim of ALS, Lou Gehrig's disease. He was shown to be infected with Lyme. Intravenous treatment with Rocephin caused a remission of his otherwise fatal illness. He has treated both ALS and MS patients for Lyme and met with some success. However, his findings have not yet been published. Protocols for treating CPN include Amoxicillin, Docycyline, Zithromax and Flagyl. Interesting. These are all Lyme drugs. Dr. Stratton has also recommended Rifampin, which at times is very effective as a Lyme therapy. He also recommends INH, an anti-Tuberculosis drug, which most physicians avoid because the risk of liver toxicity is substantial. Many patients evaluated for Lyme have high antibody titers to CPN. Since it is an intracellular germ it is difficult, like Borrelia, to prove it is causing active infection. However laboratory experiments attest to its hardyness and its uncanny ability to defeat both the immune system as well as antibiotics. These two areas of research and treatment have been sparate from one another. Again the commonality is the idea of chronic L-form infection leading to a host of consequences. Patients with a high L-form burden may be more likely to have vitamin D dysfunction with reversal of normal levels, as described by Marshall. The importance of CPN may be that simultaneous infection with Borrelia makes treatment more challenging. It may help direct the choices of antibiotics as well as the likely duration of treatment. CPN is not a Lyme co-infection because it is not tick borne. It may ultimately be of much greater importance than the usual co-infections that are stressed by most "Lyme" doctors. Most "Lyme literate MDs" do not discus CPN. Doctors who specialize in CPN, there are not many of them at this time, seem to be unaware of Lyme literature. I believe the integration of these two areas will eventually lead to newer thinking and treatment for what is becoming rather than just Lyme disease, but the Lyme complex syndrome.

What do you think about supplements and alternative and complentary treatments for Lyme

It is very hard to find doctors who treat chronic Lyme disease. Many physicians use a lot of supplements, herbs and experimental therapies. There is not a lot of science which supports these treatments. Many of them have no benefits and some may be harmful. I have treated many patients who have spent years taking all sorts of alternative remedies, having spent many thousands of dollars who have not improved. I have found that Lyme itself is so controversial. So I try to stick to therapies for which there is some scientific evidence or at least rational mechanisms of action which seem very reasonable. It is my job to make sure I cause no harm to my patients. Patients have been treated with intravenous hydrogen peroxide, vitamin C and colloidal silver. These treatments are extreme, unproven and may be very harmful. Dr. Burrascano, for whom I have the utmost respect, considered the father of the chronic Lyme discipline recommends a host of vitamins and supplements. He does not back up these recommendations with any studies which prove that these things make a difference. My patients get better without a plethora of supplements. The cost of these things is not insignificant. I will address some of the supplements and give comments about them. Multivitamins: no evidence that they help. Alpha-lipoic acid: No evidence that it helps. Co-enzyme Q 10: There is evidence that this drug, supplement helps patients with congestive heart failure; there is no evidence that it helps Lyme patients. L-carnitine: Serum levels may be low. This can be documented with a blood test. It may help with muscle pain. In my experience this supplement has not been helpful and I do not recommend it generally. Magnesium: This is an important mineral for muscle and nerve function. Serum levels do not correlate with tissue levels. The red blood cell level of magnesium may be a better surrogate marker for deficiency in tissues. Certainly patients who take diuretics are magnesium depleted. Magnesium has been clearly shown to help patients with muscle cramps. With all this said, I have not found that Lyme patients with muscle pain benefit from this supplement. But it is benign, inexpensive and worth trying. Be aware it also acts as a laxative. Omega-3 supplements, like fish oil and flax seed oil: These supplements may have many benefits, particularly with regard to cardiovascular protection. Some psychiatrist report improvement in a variety of psychiatric symptoms with these supplements. They are reported to have inti-inflammatory and anti-0xident properties. My experience: Not helpful. Take them if you have a cholesterol or cardiovascular issue. Vitamin B12: Many Lyme patients have low levels of this vitamin which is critical to nerve functions. When levels are below 350 the assay may not be accurate. I do recommend treatment for patients with B12 levels under 300. I have not seen that it makes a difference clinically, but it seems a prudent preventive measure. Usually 1000ugm orally per day is sufficient. Methyl-Cobalamin, a special injectable form of B12 is also recommended by Dr. Burrascano. It is expensive and I see no reason to recommend it. Folic acid: This vitamin can also be low in Lyme disease. I prescribe it when lab test show deficiency. It also essential to the nervous system. Vitamin C: Of no clear value, I do not recommend it. I will talk about mega C with NaCl later. Many patients are on Plaquenil to cause alkalinization of tissues. Vitamin C may cause acidification and counteract this medicine. Also, because vitamin C exists in both a reduced and oxidized state it may promote oxidation in tissues rather than acting as an anti-oxidant as advertised. Zinc: May help to prevent colds when used topically as "Cold-eze" , it has been shown to enhance wound healing. There is the notion that short courses of zinc may boost immune function in certain scenarios. However, long term use of zinc has not been shown to beneficial and I do not recommend it. Vitamin D: I do not recommend this at all. It may be harmful and have deleterious effects on the immune response to Lyme. There are many other vitamins and supplements taken by many patients. I have no evidence to support any of them. Herbal medicines are a different matter.

I have a lot of respect for Herbal medicines. They have been around for thousands of years. Indian Aruvdedic therapies are supported by a long tradition. The same can be said for Chinese and native American herbal therapies. Herbs are real medicines which cause a real pharmacological response in patients. The truth is that there is very little scientific research to support the use of these therapies. Most medical research is sponsored by pharmaceutical companies who are able to patent their inventions. There are no financial incentives to fund research on natural medicines. Still, there is good evidence that many herbs work. In Germany, St. John's wort is more likely to prescribed for depression than Prozac, because it works. Many patients with Lyme have been treated extensively with herbs. I am concerned. These preparations are unregulated and of unknown effectiveness and safety. Perhaps my patient sample is biased, but I have treated many patients who have failed expensive alternative herbal therapies. The most touted herbal remedy is Cat's claw. Some patients report that it has been a little helpful, but it has not altered the amount or duration of antibiotics necessary to get patients into remission. My patients have been kind enough to give me some books. The book "Healing Lyme" by Buhner has a brilliant summary of basic science surrounding the Lyme issue. He offers a host of complex herbal protocols which he claims can used in various ways. There are no studies or scientific verification of any kind to validate these recommendations. I am opened minded, but somewhat skeptical about these therapies. There are non vitamin or mineral based, non herbal supplements which I think are useful. They will be described below.

Bile acid binders for neurotoxins appears to be very effective; this was discussed elsewhere. In the book "The Top 10 Lyme Disease Treatments" I was introduced to the concept of systemic enzyme supplementation. The concept is that much inflammation seen in Lyme and other disorders causing joint and muscle pain is due to circulating immune complexes. These are antigen and antibody bound complexes which stay in circulation for some time and provoke immune responses characterized by inflammation. Enzymes which "digest" unwanted proteins can be taken which speed up the removal of these unwanted protein complexes. The enzymes are primarily digestive enzymes but also include Bromelain, a component from pineapple which may reduce inflammation. Whether or not this purported mechanism of action is real I cannot say, but these therapies do seem to work. They are used extensively in Germany and other European countries, and there is a body of research which supports their efficacy. The primary preparation which has been studied is called Wobenzym-N. It is enterically coated to avoid uptake in the gastrointestinal tract and promote adsorption into the bloodstream. It is taken twice daily between meals. I cannot say the effects of this preparation are overwhelming, but many patients do seem to have modest therapeutic benefits. It is particularly helpful with pain. It is not an anti-Lyme therapy, but an adjunct which may safely provide symptomatic relief.

There are many herbs and supplements which I know very little about. Perhaps over time I will feel more positive about recommending others.

Salt and vitamin C seems to be strange therapy for Lyme. It is talked about on a website called and in Rosner's book, "The Top 10....". I have patients who have tried it. It has not been very successful. I do think it has seem de-worming properties. If patients are infected with parasitic worms such things may be expressed in the stool when this treatment is used. Some Lyme patients think there is a relationship between Lyme and micro-fillarial infections of the intestines. I am open to the notion that there may some parasitic infections about which medical science currently has no knowledge. It may be possible that there is a tie in with Lyme. Although this is highly speculative some interesting ideas will be discussed in a section dealing with a disturbing and thankfully rare illness, called Morgellons disease. Morgellons patients appear to all be infected with Lyme as well as a mysterious parasite.

Thursday, May 29, 2008

What does gluten have to do with Lyme?

One of my colleagues, an ILADS member, who treats many chronic Lyme patients told me that her patients all had Celiac disease. That's interesting. None of my patients had this problem. Doctors are conventionally taught that Celiac disease can be reliably diagnosed by a blood antibody test called tTG of the IgA class. Celiac disease is caused by an allergic reaction to a protein found in wheat products called gluten. The gold standard for the diagnosis is a small bowel biopsy, generally obtained via an endoscope, passed through the mouth into the duodenum, which shows the characteristic pathological changes of a loss of villi. The disease is associated with gastrointestinal symptoms including diarrhea, maladsorption of nutrients, abdominal pain and bloating and weight loss. There are also non gastrointestinal manifestations of the disease which may be variable, but include fatigue, muscle and joint pain, peripheral neuropathy or numbness and tingling and cognitive impairments including brain fog. These symptoms are identical to the ones seen in chronic Lyme disease, is there a connection? Celiac disease is supposed to be present in 1% of the general population. I tested all my Lyme patients. None were positive. What's the rub? I did a little more research. Another paradigm bending idea is out there. Gluten sensitivity may be a disorder which exists on a continuum. Perhaps Celiac is the tip of the iceberg. There may be many patients who do not have full blown Celiac but still have gluten sensitivity. Perhaps many of these patients have an exacerbation of "Lyme" symptoms because they have another disorder which dovetails its symptoms with those of Lyme disease. Perhaps gluten sensitive individuals were not terribly symptomatic until they developed Lyme disease. And then the non gastrointestinal symptom complex becomes prominent. Many Lyme patients do in fact have gastrointestinal symptoms. Many patients with gluten sensitivity are diagnosed with such things as irritable bowel syndrome, non-specific or microscopic colitis, gastrointestinal reflux and a host of related disorders. Research has shown that this group of patients has a much higher incidence of gluten sensitivity. So how is this diagnosed. The standard blood test and small bowel biopsy will be normal. A specialty lab, called Enterolab, has pioneered a stool test which detects small amounts of antibodies directed against gluten. Primarily, this is the stool anti-gliaden antibody test. The test can only be ordered on line by patients and costs about $100.00. Again, the concept is that these patients do not have Celiac disease. None the less, they have a gluten allergy or sensitivity which causes many symptoms which overlap with those of Lyme patients. When such patients go on a gluten free diet they feel better and many of their symptoms improve. This is not a replacement for treating Lyme, but may be a helpful adjunct filling in a piece of a complex puzzle. I should caution the reader that this is a difficult diet. Symptom relief may not be seen for about two months. The diet must be continued indefinitely since there is no cure. Gluten has nothing to do with Lyme. A new paradigm suggests that many folks suffer with gluten sensitivity which is not Celiac disease, who may benefit from a gluten free diet.

Wednesday, May 28, 2008

Why doesn't my doctor believe in Lyme disease?

This really is a key question. Most doctors accept the reality of acute Lyme disease. It is seen as a minor nuisance which is easy to treat. They accept that a few patients have serious complications, such as cardiac conduction problems which may be life threatening. But they do not believe in chronic Lyme disease. They have been informed that it doesn't exist. Doctors who take chronic Lyme seriously find themselves to be a small devoted minority. Most of them have probably stumbled into the field because a family member or they themselves have suffered with Lyme. To those who treat it every day it is a clear as the nose on your face. To those that do not, it is simply not real, period. Lyme physicians and their patients find themselves incredibly frustrated. The symptoms are real. The abnormal physical examinations are real. The abnormal labs are real. The Herx is real. The improvement is real. And what do these non believers have to say about any of it. Nothing. Is there an alternative explanation or diagnosis. No. They are quick to say what it is not. It is NOT LYME. What is it? we don't know. To these "mainstream" doctors chronic Lyme is just another fad which will over time become discredited. They point to such past popular diagnoses as "the yeast connection" or chronic Espstein Barr infection, and lump chronic Lyme into the category of such things that are destined to be thrown in the waste bin of medical history. This gets up the dander of "Lyme" docs. What do these mainstreamers say about hundreds of peer reviewed scientific papers, published over more than a decade which validate the notions of chronic Lyme? Nothing. They haven't read them and they don't have to. The "experts" say is hogwash, and that's good enough for them. Of course it depends which "experts" you are talking about. So the "Lyme docs" have called themselves LLMDs (Lyme literate Medical Doctors). I don't think this has helped the cause. This makes this group of physicians appear almost cult like, outside the mainstream, more arrogant, zealots on a mission and therefore easier to marginalize and dismiss. The discussion frequently becomes personal, vitriolic. Anger does not help with communication. It causes the message to be lost. In actuality the message that chronic Lyme is a canard has been pushed by a single organization. The IDSA. The Infectious Disease Society of America. I will step out on a limb. I do not mean to cast any aspersions, but the names Wormser and Steere seem to surface whenever this position is pushed. The CDC is in lock step with the IDSA, but the CDC does not do any research here. They have deferred to the opinions of the IDSA. Even the IDSA posts a disclaimer with its guidelines. It essentially admits that they are guidelines, IE an opinion. They are not carved in stone. Perhaps the whole argument is about something basic, something for which there is much precedent in the history of medicine and science. Perhaps it is about the process of a paradigm shift.

Thomas Kuhn, a physicist and Historian of Science coined the term paradigm shift in the middle of the 20th century. The essence of his thesis was that normal science involves work which incrementally adds pieces of data to an established paradigm. A paradigm being a basic theoretical construct that researchers can generally agree upon which forms the foundation of their work. Scientist by in large are not creative. They are methodical. It is their job to add to the paradigm. to prop it up. Evidence which goes against the prevailing paradigm tends to be discarded. Worse, it has been common for the source of that unwanted information to be discredited. If the new information is indeed correct, then the old paradigm might have to be torn down and a new one constructed. What an unpleasant thought!
If scientist were to jump on the band wagon of every new idea that comes along it would be disruptive, and nothing would ever get done. Most revolutionary ideas are wrong. But not all. Every revolutionary, paradigm shifting idea that comes along is science or medicine is crazy, a crackpot theory, ridiculous and so on, until they day it becomes accepted. And then it is BRILLIANT. Paradigms do not shift without a paradigm war. Many have spoke of the "Lyme wars." Paradigms do not fall easily. Without paradigm shifts we would have a flat earth with earth the center of the universe. There would be no Newtonian physics, no germ theory of disease, No Einstein's relativity and no germ which causes peptic ulcers. By the way, the two researches who made this absurd claim were ridiculed for years and then ultimately awarded a Nobel prize in medicine.

Another notion has to do with a theory in psychology caused cognitive dissonance theory. Roughly, it states that when someone is presented with evidence which contradicts a deeply held belief it creates a lot of unhappiness or anxiety in the individual. The individual wants to quickly resolve the matter. Either the deeply held belief must change or the facts must change. People don't like to change deeply held beliefs, so the facts are changed. A non medical example of this theory explains some incredible behavior of prosecuting attorneys. Someone has been put in jail for murder. The person has languished there for 20 years. New DNA evidence proves beyond any shadow of a doubt that the accused is innocent and has been falsely imprisoned. The prosecutor refuses to reopen the case. He knows he a good and kind person and that he serves the welfare of the community. To consider that he had erroneously imprisoned a man for life would challenge his most fundamental beliefs about himself. This is unacceptable. He refuses to reopen the case. The prisoner will spend another 20 years languishing in a hell he doesn't deserve. This example describes a basic principal which governs much human behavior. If a physicians has spent 25 years practicing medicine according to a particular paradigm and a new paradigm suggests that he has been doing everything wrong, he might just resist that new paradigm with every fiber of his being.

That is why I believe that your doctor does not believe in Lyme disease. As it has been said: There is none so blind as he who will not see.

Tuesday, May 27, 2008

What is a Herxheimer or Herx reaction?

This is a key piece of the chronic Lyme puzzle. The terms goes back to the early treatment of syphilis. Drs Jarish and Herxheimer noted that when patients were first treated for syphilis they frequently experienced a toxic, dramatic deterioration in their symptoms, after which the patients would show signs of improvement. This response was named the Jarish-Herxheimer reaction. Over time it was shortened to Herxheimer and then Herx reaction. The term has even become a verb. Patients frequently speak of "herxing." It turns out that only a small number of infectious diseases are know to be associated with a Herxheimer reaction. In addition to syphilis and Lyme, it is limited to several obscure spirochetal diseases such as relapsing fever, rat bite fever and to anthrax. It is a short list. Having a Herxheimer reaction when treated for Lyme is considered good evidence that the diagnosis was on the mark. A Lyme Herxcheimer may not be as severe as that seen with other diseases such as syphilis, but is usually not subtle. It typically starts several days or a week after antibiotic treatment is started in earnest. The primary symptom is profound fatigue, which can at times be disabling. Patients may experience low grade fevers, chills, flu like symptoms and joint and muscle pains. A brain Herx occurs when cognitive and or neurological symptoms temporarily get worse. They are many variations of the Herx response. The bottom line is that there is a worsening of pre-treatment symptoms. The typical Herx reaction lasts for 3 t0 4 weeks, but it can persist for months is some cases. Usually after the Herx abates the patient starts to suddenly feel better and have more energy. The primary Lyme symptoms may not start to imrove for weeks or months yet to come. There are different theories about how to manage a Herx reaction. Some physicians start patients off with very low doses of antibiotics and gradually ramp them up over many months in an effort to stave off the Herx response. I have not found this response effective. I have seen patients treated by other physicians who have still not reached a therapeutic dose of antibiotics based on this method. In my experience a Herx is something the patient is going to have to deal with, so I prefer to jump right into regular doses of medicines. If a Herx is excessive, then the antibiotic(s) can be held for 48 hours and re-introduced at a lower dose. I still try to ramp up quickly. Other methods have been used to mitigate the Herx. A low dose of prednisone can be used. Many physicians would avoid this. Vitamin D can be used on a short term basis because of its anti-inflammatory properties, although I do not recommend long term use of this supplement. Other strategies are used by other clinicians.

A Herxheimer reaction probably occurs for a couple of reasons. First, there is probably a huge number of spirochete organisms present in the body if killing them is causing a systemic reaction, experienced throughout your entire body. Second, there may be something unique about the immue reaction to the organism. The intensely red rash which can been seen with early infection indicates a marked inflammatory response. Apparently, the killing of the organisms is also associated with a dramatic inflammatory response. This is medicated by special proteins called cytokines, which mediate the functions of various aspects of the immune response. Lyme may be associated with a greater amount of cytokine release than is typically seen with other infectious processes. These cytokines are categorized into various classes, such as interferons, interleukins, tumor necrosis factor and others. Specifically, it may be the germ fighting molecule interferon which causes much of the Herxheimer reaction. When you have the flu, it is not the germ which makes you feel so sick. It actually the release of cytokines, like interferon which causes the so called "flu like symptoms." This is pretty much what happens with a Herxheimer reaction. It just lasts longer than the flu does. It also is not associated with a high fever like the flu. With the flu it is probably the particles themselves which become pyrogens and trigger the germ killing response of elevating your body temperature.
Herxheimer reactions are seen by some as a good thing. It means the buggers are being killed. It is also associated with an increased immune response to Lyme. Frequently while it the throws of such a reaction, a repeat Lyme serological test, like the Western Blot test will become positive when it was previously negative. This is called sero-conversion. This is excellent news which confirms the accuracy of the diagnosis and the correctness of the treatment.

Friday, May 23, 2008

What are co-infections and why are they important?

It turns out that our friend Ixodes, the deer tick, carries other germs which it can transmit to us, not just Borrelia, Lyme. These other tick borne germs are referred to as co-infections. Evidence of these co-infections can be significant in one of two ways. It adds supporting evidence to the Lyme diagnosis; or the co-infections themselves may be complicating the disease, making you sick or sicker, perhaps the reason why you are not getting better when Lyme alone is treated. In the usual sense the term, co-infection is reserved for other germs carried by the tick vector. Your doctor may look for evidence of other infections which are not tick borne. Although they are not strictly c0-infections, they may be other chronic infections which act in concert along with the tick borne germs, as if things weren't already bad enough. Some writers speak of Lyme as the "gateway" germ. It lowers your body's immune defenses to the point that previously contained organisms now gain the ability to cause illness. This of course is conjectural. The primary co-infections are: Ehrlychiois, which comes in two varieties. It is a small bacteria, will a gram negative cell wall (bacteria are divided based on two different cell wall types, the gram negative nomenclature indicates that the cell wall does not take up the gram stain). These germs live inside the vacuoles inside the cytoplasm of cells(they are only intracellular). Infection is usually mild and found incidentally when patients are tested for Lyme; however, Ehrlychia chaffensis, also called HME (Human Monocytic Ehrlychiosis) has rarely reported to be fatal. Lyme is generally not considered a fatal disease. Although many "Lyme docs" would dispute this assertion. HME can cause symptoms which mimic those of Lyme disease. It typically has more fever and headache. It may have more atypical symptoms, including nausea, vomiting, diarrhea as well as cough. It also can cause confusion. Fulminating infection with shock has been reported. HGE, Human Monocytic Ehrlychiosis is also caused Anaplasmosis. They names are annoying and redundant, sorry about that. It is very similar to HME. The kicker is that many labs only test for HME, so your doctor must specify a test for HGE as well. I use Labcorp a lot. They give me antibody levels for HME, which I find more accurate, but tend to give me PCR testing, which looks for the DNA form HGE which I find less reliable. This is one test where Quest labs does a better job. Both are treated with Doxycycline, which is convenient since this is a good Lyme drug as well. If Doxy can not be used, Rifampin has been used second line. The best bet is to find a tetracycaline if possible. The duration of therapy of course is controversial. Standard texts suggest that only a short course of therapy is needed. I like to treat with Doxycyline 200mg twice daily for two months.

The second co-infection is Babesiois. This is more controversial. There may be many strains, but tests are available for B. microti and B. WA. Most doctors get an antibody test. Many infectious disease specialists insist the disease is not present unless it is seen in a blood smear or by PCR DNA/RNA testing. Lyme docs don't think is shows up this way once it is chronic. It infects red blood cell, but very few cells may be infected so microscopic screening of blood smears is inaccurate. The DNA test may be better. But it only works if you know what strain you are looking for. And again, in chronic infections if may be associated with false negative results. Babesia is not a bacteria. It is protozoan. A larger one cell organism of the kind frequently lumped in with the term parasite. It is malaria like, because it attacks red blood cells. Many experts believe the normal immune system is usually able to clear it without medicines. Some infections can be life threatening, but this is rare. It causes a lot of Lyme like symptoms. But it is more typically associated with a malaria like pattern. Patients tend to have recurrent fevers and chills, weakness and muscle pains which occur on a daily or frequent cycle. When low antibody titers are present in the absent of such symptoms, I may defer treatment, viewing this more a sign post of likey Lyme exposure. Many other doctors always treat it aggressively. The usual therapies are either quinine and clindamycin, which I avoid because it is toxic, or Mepron and Zithromax, which is effective, but very costly. Quinine frequenly causes hearing loss and clindamycin is associated with a high incidence of diarrhea. The dose of Mepron is 750mg twice daily and the dose of Zithromax is 600mg daily. The Zithromax is a good Lyme drug so you get two for the price of one. A three to six week course may suffice, although I find that many of my colleagues prescribe it for 2 to 4 months. All of this causes apoplexy to most infectious disease specialist, since they believe it should be treated for only a week or so. They also believe it should only be treated if there is a positve blood smear or PCR test. Oy vay.

The last co-infection is Bartonella. This surprisingly is the bacteria which causes cat scratch fever. The usual culprit is B. henselae. Cipro is commonly used. I find this a good Lyme drug, although most of colleagues seem unaware of this. Other drugs including Zithromax, Rifampin and Doxycycine are also reported to work. So it seems that any treamtment for Lyme is likely to cover this pathogen. I do not find it often. It may be associated with more brain symptoms and it probably is fairly easy to irradicate in most patients. A month of Cipro, 250mg to 500mg twice daily for 30 days should dispatch this germ. In my next piece I will discuss germs which are not co-infections but may complicate the scenario.

What are probiotics?

A significant problem with taking long term antibiotics is that they kill good bacteria called normal flora, in your gut. These are necessary for proper functioning of you gastrointestinal tract as well as immune functions. A new concept in medicine is that some people with gastrointestinal disorders have "dysbiois." This refers to an imbalance in the normal gut flora. Some physicians use special antibiotics to kill off unwanted bugs in the gut and add back desirable microbes for non Lyme patients. It is important that all patients treated for Lyme with chronic antimicrobial therapy supplement with probiotics. The most feared complication of antibiotic therapy is called pseudomembranous colitis. This occurs when antibiotics change the balance of normal gut flora permitting the overgrowth of a nasty bacteria called Clostridia difficile. This can make you very sick. It can cause severe diarrhea, bloody diarrhea, fever and a high white blood cell count. Most patients have a mild form and easily recover with the removal of antibiotics and sometimes Flagyl or Vancomycin orally. Once a patient has had this disorder I get nervous about continued antibiotic treatment. At that point I have to carefully weigh the risks and benefits. Other complications of antibiotics include yeast overgrowth, Candida, which may require the use of ant-yeast medications like Diflucan. Diets that are low in sugar and carbohydrates may help inhibit yeast growth as well. Most probiotics are related to bacteria called Acidophilus or Lactobicillus. Some contain a mixed variety. You can't take to much because it is impossible to replace all the bacteria that the antibiotics kill. I like the Probiotic complex sold at Whole Foods. The usual dose is one to two tablets twice daily. It is recommended not to take these products with the antibiotics although I am not convinced this makes a huge difference. If this is the only way you can take them then don't worry about it. Another type of probiotic appears to be more effective. These are Sacchromyces species, marketed by such names as Florastor. These can be taken anytime. I think a combination of Acidophilus and Sachromyces probably works best. Both can be taken twice daily. Sachromyces is more difficult to find and you may have to order it online. In general probiotics seem to have many beneficial effects. They may help with irritable bowel syndrome as well as reduce lactose intolerance. Please do not omit this supplement if you being treated for Lyme disease. Taking yogurts which are fortified with probiotics is a plus, but this does not eliminate the need to take supplements.

Thursday, May 22, 2008

What's the deal with Vitamin D?

This took me a long time to figure out. It is an interesting story. Maybe only if you are a Lyme nerd like me. Patients with Lyme disease have weird vitamin D levels. Most are diagnosed with vitamin D deficiency. In fact patient have come to me saying they have a severe vitamin D deficiency which never corrects no matter how much vitamin D their doctors give them. Strange, isn't it? Everyone knows that vitamin D is a nutrient that is essential for bone health, your body needs it adsorb calcium and build strong bones. Wait a minute. Its not a vitamin at all. Its a hormone. Vitamins are co factors needed in trace amount to facilitate the actions of enzymes in the body. Hormones are messenger molecules. Vitamin D is stored like a fat soluble vitamin, but it doesn't act like one. Other vitamins are taken in via the diet. Vitamin D is mostly manufactured in the skin due to the action of the sun. It turns out that vitamin D is a busier hormone than we thought. It also has important regulatory effects on the immune system.
And do these Lyme patients really have a vitamin D deficiency? NO. Some are vitamin D toxic! Doctors are looking at the wrong thing. Vitamin D exists in several chemical forms. The major circulating form is the OH,25 form. This is the form that doctors generally measure. It should exist in the highest concentrations in the blood. This form has little to no biological activity. When you measure the 1,25 form of vitamin D the level is usually in the high normal range or even in the toxic range. This is the form of the hormone that is biologically active. Something funny is going on. A value which should be high, inactive vitamin D is low; a value which should be low, active vitamin D is high. The patients are definitely not vitamin D deficient. We better stop giving them all this vitamin D. What does vitamin D do in the immune system. High levels of vitamin D bind to receptors in immunologically active cells, including a group of cells called helper T cells. When these receptors are turned on by vitamin D it causes a response call a Th2 response and it shuts down something called a Th1 response. This is not as complicated as it sounds. Give me a minute. These two different helper T cell responses are associated with two different potential actions of this aspect of the immune system. The Th1 response is associated with chemicals and peptides which are pro-inflammatory and lead to an attack against intracellular germs, like Lyme L-forms. The Th2 response reduces inflammation and shuts down the germ killing response. These buggers are smart! Somehow, by altering the balance of a hormone called vitamin D, the germs have manipulated our immune system in a way which improves their chance of survival.
Normally this conversion of vitamin D to the active form occurs in the kidney. Some observers think that the germs are making this process occur on a cellular level. In other words, infected cells cause the change by some local effect.

Well, what do you do about it? And what does it have to do with a guy named Marshall. Dr. Marshall is PhD doctor, not an MD. He claims he cured himself of a disease called Sarcoidosis, not Lyme by using his methods. He argues that the same vitamin D abnormality is present in Sarcoid as well as other autoimmune, inflammatory diseases. He believes it occurs because a collection of L-form bacteria are in the host cells. The L-forms are not just Lyme. Other bacteria are known to be L-forms, including Chlamydia and Mycoplasm species. All of these L- forms together, conspire to cause this anomally which shuts down a critical immunological response. The theory then goes that if you can get vitamin D levels very, very low, then the Th1 response predominates and the Th2 response becomes negligible. Once this occurs, very low doses of antibiotics are all that is needed to kill the L-forms, which he and his followers claim are causing all the trouble. In order to make this happen you have to live a miserable cave like existence for about two years. You avoid all light and all dietary sources of D. Then you take a medicine which inhibits the vitamin D conversion which occurs in the kidney. When I read some of his reports I saw a claim that 30% of his chronic Lyme patients were cured. Heck, 90% of my patients are cured and I don't have to torture them. Most docs who treat a lot of Lyme have abandoned the so called Marshal protocol. But let's not throw out the baby with the bath water. I think Dr. Marshall makes some excellent points. One problem with the approach is that we clearly know that when treating Lyme patients, L-form infection is not the only issue. This is made clear by the remarkable effectiveness of drugs like Rocephin, which are unable to kill L-forms. It seems reasonable to assume that this aspect of the immune system normally functions with some balance between the Th1 and Th2 responses. Normal folks with properly functioning immune systems do not have super low vitamin D levels. So I think it is reasonable to not give extra vitamin D if the levels are normal. I think it is reasonable to reduce vitamin D levels which are clearly toxic. Such patients should avoid the sun and dairy products. I do wonder if bile acid drugs like Questran help lower vitamin
D. And in some patients the drug Benicar seems to help. It is really a blood pressure medicine of the angiotinsin receptor blocker class. But it has a nifty side effect of inhibiting renal conversion of vitamin D from the inactive to the active form. So it can help correct the imbalance of vitamin D seen in these individuals. One would hope that patients would fair better when there is a physiologic balance between these two aspects of this immune function. The truth is we still know very little about this. It is worth looking at. If nothing else, the mixed up vitamin D levels may have its greatest utility in helping to make the diagnosis of chronic Lyme disease. That's all for now.

What about neurotoxins?

Doctors who are not versed in adjunctive therapies for chronic Lyme patients are likely to be surprised by some of medications used. One class of medicines is used to remove neurotoxins.
Toxins may accumulate in the blood stream which are made by the chronic infection. These toxins are filtered by the liver, but are recycled and not removed from the body. Medicines called bile acid sequestrants can remove these toxins along with bile acids. The primary non Lyme use of these medications is to lower blood cholesterol levels. The two drugs are Questran and Welchol.

The exact nature of these toxins is not undestood. Clinically it has been observed that these medication can help with neurocognitive symptoms and occasionally help with other Lyme related symptoms. These meds do not active systemically; so they are safe to try. The only common complication is constipation. They should not been given with other meds because it may decrease their adsorption.

Doctor, Do I have to take antibiotics for months? Aren't they bad for me? Won't I be resistant when I really need them?

Let me answer the last part first. You don't become resistant, the germs do. When germs are bathed in an antibiotic environment they have the ability to evolve and become resistant. It goes something like this: Suppose you present a germ killing antibiotic to a large population of bacteria. Normally this antibiotic is known to be effective against these germs. Perhaps the antibiotic kills one million bacteria, but there is one that is left behind. A random gene mutation has occurred in that one bacteria which protects it from the germ killing properties of the antibiotic. That resistant germ then goes on to reproduce and create a whole population of "super bugs" which are resistant to the previously effective drug. One theory which is bandied about is that partial treatment of the germ population makes this more likely to occur. In other words, if you kill 90% of the bacteria present then the surviving 10% are more likely to posses some relative genetic protection which can be refined as this group continues to reproduce. Bacteria do not share pieces of DNA so this theory seems improbable to me. The theory goes on to suggest that continuous antibiotic pressure against the germ population doesn't leave any stragglers behind who can then mutate and become resistance. Again, this theory doesn't make any logical sense. The truth is that antibiotics do in fact makeit more likely that resistant bacteria will emerge.But there are other important issues you need to keep in mind. Germs can only become resistant if you are infected with them. If you do not have a Staph infection then you cannot become a factory for MRSA. These mutations primarily occur in hospitals because that is where you find lots of sick people who are infected with things like Staph. You have to weigh the theoretical good of society against the needs that you have as an individual. We don't know for sure that you taking antibiotics will increase the population of resistant germs in the community; but we sure as hell know that you need the antibiotics and that you will probably become sicker without them. If you don't need them you shouldn't be taking them.

Borrellia burdorferei, the bug that causes Lyme is a nasty critter. A lot of science has been done to prove how hard it is to exterminate. It can change it outer proteins to fool your immune system. It can acquire host proteins and display them on its surface to camouflage itself from you immune system. It sequesters itself in hard to get at places. It morphs into three different forms. It widely disseminates to many tissues throughout your body. It changes your body's chemistry in ways that subvert your immune responses, as will be discussed later. Animal studies prove that dogs who have been treated with huge doses of antibiotics still have the spirochetes in their systems. Patients who have gotten better after long courses of antibiotics frequently relapse soon after the antibiotics are stopped. And they start getting better when the antibiotics are started up again. ILADS reports that chronic Lyme patients require antibiotics for one to four years. Dr. Jones, the 81 year old pediatric authority on Lyme reports that his patients have required treatement for three to seven years. Here is the rub. It is very hard to cure. Still, many of my patients get better in 4 to 9 months. I have one patient in my practice who has been on antibiotics for 12 years, he is stable but unfortunately his Lyme is still quite active. I don't know any doctors who want to prescribe long term antibiotics. We just want to make our patients better, symptom free without relapse. And we are willing to do whatever is necessary. That is why we became doctors.

Basic treatment of Lyme

Acute Lyme is easy to treat. Chronic Lyme is very hard to treat. A new case with an observed tick bite, a rash and acute flu like symptoms is usually fairly easy to treat. A four to six week course of Doxycyline, Amoxicillin or Ceftin should be adequate. If the patients appears fairly sick combination therapy with Doxycyclin with Amoxicillin or a similar mix may be used. Patients who present with a severe, acute form of the disease are manged differently. Patients for example may have acute meningitis and or encephalopathy. Such patients require aggressive treatment with intravenous antibiotics. My primary concern is treatment of patients with more typical chronic Lyme disease.

Long courses of antibiotics are usually necessary. Let me by explain the major classes of antibiotics and their mechanisms of action. Antibiotics can be classified as those which are bacteriocidal, those which kill bacteria, and those which are bacteri0static, those which stop replication of the germs. The clinical significance of this point with regard to Lyme therapy is not clear. Medications can be given either intravenously, requiring the placement of catheter called a PIC line, or they may be given orally. The choice of route is determined by many factors.

Cell wall antibiotics. This group of medicines inhibits the ability of the germ to assemble its cell wall. They are considered bacteriocidal. These are highly active against spirochetes. This class of antibiotics is effective against intact spirochetes, not L-forms or cyst forms.

Drugs that kill the cell wall deficient L-forms works within the cytoplasm, or interior of the bacterial cells. Drugs in the tetracycaline and erthromycin family work by inhibiting protein synthesis in structures called ribosomes. Tetracycalines, like Doxycyline and Minocin are popular. Macrolide drugs, related to Erthromycin work by the same mechanisms. These drugs are frequently combined with Plaquenil which has been shown in clinical studies to enhance their effectiveness.

Anti-parasitic medicines have been shown to kill Lyme cysts. These include Flagy and Tindamax.

Quinolone antibiotics, especially Cipro have also have been used for Lyme.

Rifampin is occasionally used. It inhibits bacterial RNA synthesis.

Antibiotics for Lyme are usually in combination. Different meds seem to work best for individual patients. The reason for this is unknown. Trial and error may be the only way to decide which antibiotics are best for a given patient.

Wednesday, May 21, 2008

My test was negative: What makes you think its Lyme?

Lyme is a clinical diagnosis. No laboratory test can be absolutely relied upon. Even the CDC agrees with this. There are many studies to support this. Check out the ILADS website regarding this issue. I believe the diagnosis can be reliably made. Most of the diagnostic approach I used is unpublished. Some of it is published as fragments. What I try to present here is the whole, based on my experience and careful thought about this puzzling illness. The diagnosis must be suspected when patients live in regions where the disease is known to be endemic. Most patients present with an array of symptoms that are typical of the disease. Again, for the most part I am speaking of chronic Lyme disease, not the acute forms. Fatigue, pain, numbness and tingling are almost always present. Headaches and a loss of balance are very common. But it is the cognitive aspects of the illness which grab my attention. The online brochure available from the ILADS website entitled "What psychiatrists should know about Lyme disease," is very instructive. Lyme readily attacks the brain and central nervous system. The brain symptoms of Lyme disease are thought to be mediated by three effects: direct invasion by the bacteria, local inflammatory effects from the elaboration of neurotoxins, and autoimmune effects caused by the infection. Physicians call Lyme affecting the brain neuroborreliosis. A review of Lyme related medical literature might give one the impression that this is relatively rare. In my experience it is the rule, not the exception. The most consistent symptoms are problems with word retrieval, trouble with concentration, short term memory loss, brain fog, episodic confusion, a generalized slowing of cognitive processing necessary for critical thinking, analysis and problem solving. Frequently only the patient is aware of these symptoms and not observed by family members. Psychometric tests available at research institutions such as Columbia University can demonstrate these sometimes subtle changes.

Chronic Lyme patients with neuroborreliosis have abnormal physical exams. This appears to be universal. The abnormalities my be subtle and easily missed. Lyme does not effect only the brain; it affects all the parts of the nervous system, including the cranial nerves and the peripheral nerves. Cranial nerve abnormalities include some of these signs: A partial Bell's palsy may be present, which is drooping on one side of the face, the eyes may not move all the way laterally when the patient is asked to look all the way to the side, the tongue may deviated to one side.the uvula may be deviated to one side or the soft palate may move poorly and there may decreased sensation on one side of the face when tested with a sharp object. All of these findings are abnormal, common and frequently seen in Lyme patients. Abnormal reflexes including the Babinsky response and the Hoffman response may be frequently seen in Lyme patients.
A common finding is a decrease in sharp sensation seen in the distal arms and legs. This is referred to as a stocking and glove pattern of sensory loss. Many patients have a loss of vibratory sensation seen with a tuning fork test. History and physical findings can by themselves strongly suggest the diagnosis of chronic Lyme or a similar condition.

Abnormal lab findings may be more common than thought.. The expanded Western Blot test from labs like IgeneX is more accurate than results obtained through other labs. The C6 peptide antibody test for Lyme is a new test. I find this test helpful. I interpret the results differently from most physicians. The explanation for this is complex. The CD57 (Stricker panel) measures a subset of natural killer T cells which are typically depressed in chronic Lyme. Complement activation, an immunological response to infection and inflammation can be demonstrated with measures of C3a and C4a. Vitamin B12 and folic acid levels are frequently depressed. Vitamin D levels may show a reversal pattern. The inactive form is low and the active form is high. This may be due to a compex action of L-form, intracellular bacteria which suppresses normal immune responses. This is complex an will discussed elsewhere.

Imaging tests including a contrast brain MRI and a SPECT or SPECT scan may show abnormalities associated with Lyme involving the brain.
Diagnosing Lyme is complex, but can be reliable when a mix of tests and methods are combined.
The presence of co-infections is another important clue to this disease.

Tuesday, May 20, 2008

Why is Lyme different from other bacteria

This is the $64,000 question. What makes it special. Bacteria are either pathogenic, meaning they have the ability to cause disease, or they are non pathogens: they don't make you sick. Some bacteria are a little of each. For example, Group A Beta hemolytic streptoccoci can live peacefully in your throat, a situation doctors call colonization, or it can make you sick as hell with a raging tonsillitis, rheumatic fever or worse- necrotizing fasciitis, the dreaded "flesh eating germ." Bacteria can behave in unpredictable ways. For the most part, they either make you sick or they don't. They don't cause something in between. Or do they? Chronic Lyme is about a new paradigm in infectious diseases. Here the germ just makes you a little sick, to varying degrees. It is well established that some bacteria are hard to eradicate. Colonization with Strep or Staph, including MRSA is difficult to eradicate. The mycobaterium which causes tuberculosis is notoriously difficult to treat. Infectious disease specialist here have no qualms about recommending a two year course of three antibiotics to treat the problem. Of course with TB you are either sick or not, not somewhere in the middle. Most persons harboring tuberculosis are considered not sick. The germ is walled off and dormant. Medication to prevent activation is not warranted if you are past a certain age because the risk of liver toxicity from the medicine exceeds the potential benefit of treating a germ which is not currently making you sick. Physicians must follow the dictum: First do no harm.

The whole notion that germs which do not make you obviously sick are making you sick in subtle, less obvious ways is not accepted by current medical paradigms. In other words, the germ is not causing a raging fever or causing you to cough up horrible foul colored and foul smelling sputum. In fact to the casual observer you do not look sick at all. But you know something is wrong. You have symptoms. The process is frequently insidious. It waxes and wanes. You frequently dismiss the symptoms and try to push through them. You chalk it up to the normal aging process, even if you are only 25 years old.
The notion that chronic bacterial infections cause illness is not described in medical texts. It is not included in standard lecture series given to medical professionals. Diseases are categorized for physcians into clear groups. They are inherited disorders, neoplastic disorders, degenerative disorders, automimmune disorders, disorders particular to an organ system, disorders of the glandular system, disorders of self-regulation or homeostasis, degenerative disorders, disorders of aging, disorders of an unknown cause, neurological disorders or infectious disorders which present with a very specific set of symptoms. Specific diagnostic tests and treatment protocols are codified in conventional medical texts. (I am sure I have left out many other categories of disease, this list is only for informational purposes). Slow viral diseases are well accepted. HIV has a long latency period. Hepatitis C may be present for 30 years before your liver begins to fail.But there is no category of chronic bacterial infections which make you sick in subtle ways. Enter Lyme disease.

The immune system left to its own devices is unable to eliminate spirochetes, the cork screw shaped germs which include Borrelia, the Lyme species. We know this from the Tuskeegee experiment. This is a horrendous chapter in the history of medicine. A cohort of African Americans with syphilis, not treated and followed over time, ended up with the ravages of third stage syphilis, including brain and other end organ damage. Lyme is like syphilis on steroids.

Lyme is bigger, badder and smarter than T. pallidum, the syphilis germ. It has a lot more genes: 132 vs 20. It has the ability to mold its surface proteins to avoid the immune system and to morph into three distinct forms in a fashion reminiscent of a shape shifting alien monster from science fiction stories. It is known to have a proclivity for attacking the brain and the nervous system. It reproduces slowly and spreads throughout the body without much interference from that pesky immune system. And this is no mean feat. The human immune system is a remarkable highly evolved and effective masterpiece of biological engineering. For a bacteria to so effectively ignore these defenses is no mean feat. And yet it does these things. And much research has been done showing just how it does it.

The spirochete starts its tricks shortly after the tick bites the host, you. When your blood flows into the tick it carries antibodies which would normally destroy the germ. It has the ability to upregulate and down regulate surface proteins to help it avoid the immune system. In other words, it can make proteins on its surface appear and disappear at will in order to provide the optimal protection from your immune system. Once it enters your tissues it drills into tissues and cells where it is relatively protected. It spends very little time out in the open, in fluid compartments like the blood stream where it could fall easy prey to the immune system. When conditions are right it becomes an inhabitant of the inside of your cells. When it is intracellular it looses it cell wall. It stops being a spirochete and becomes something called an L-form. At other times it quickly converts to a cystic, spore like structure which also protects it from the immune system. Over time, as the infection becomes firmly established it makes other changes in your immune system. It somehow lowers the numbers of Natural Killer T cells, an important part of the germ killing cell mediated immune response. It increases the amount of active vitamin D which suppresses an anti-germ response of the helper T cells. It sequesters itself in various niches which are difficult to access. . Germs evolve in ways to ensure their survival. Some bacteria, viruses and parasites make us sick, others do not. Lyme is a parasite which ultimately can make us very sick over time.

My blood test says I don't have Lyme disease.

Unfortunately, many of the patients that I see have been worked up by other physicians and told they do not have Lyme disease. Usually the physician is unfamiliar with the symptoms of chronic Lyme disease and may have ordered a blood test at the urging of the patient. The blood test is negative, so the patient is told they don't have it. When doctors order the usual blood test for Lyme disease they get a test called an ELISA, which looks for antibodies against Borrelia burdorferi, the bacteria responsible for Lyme disease. Without going into the technical details, this test provides a color reaction when these antibodies are present and react with Lyme bacteria. The amount of color change is read by a device which provides a numerical index. If the index exceeds a predetermined threshold the test is read as positive. If it is less than the threshold the result is negative. When the index is in the positive range a second test called a Western Blot if performed to confirm the diagnosis. This test looks for specific antibodies against Lyme which settle out on a diffusion medium based on their weights. These individual antibody-antigen reactions are called bands. They are labeled based on their molecular weight in kilodaltons or their position on the medium. All of this gets quite technical, but it is necessary if I am to explain the issue.

When the test for Lyme was first developed it was found that many control sera (blood samples) from the control group of patients thought not to have Lyme showed a great deal of color change, indicating antibody reactions for Lyme. It is known that some antibodies are non specific and can react to a variety of foreign proteins. For example, some of the antibodies which react to the Lyme bacteria can also react to other germs which the individual may have been exposed to, including such viruses as Epstein Barr virus and Hepatitis C virus. It was believed by the early researchers that Lyme was a relatively rare disease; therefore, it was assumed that the widespread antibody reactivity in the control group was due to non-specific cross reactions to other germs the individuals may have been exposed to. A panel of experts was assembled to decide what the cut off point was to be for a positive test. This was a best guess based on information available at that time. The ELISA was supposed to be a screening test. Initially there was concern that this widespread cross reactivity might cause many false positive reports for Lyme disease. This test was meant to be sensitive, but not specific. This means that it was supposed to pick up all blood samples which tested positive for Lyme exposure but would also find false positives: individuals who did not have Lyme exposure but a nonspecific cross reaction.. A second tier test was put in place to make sure all the ELISA positives were truly positive. This is called the Western Blot.

There is a problem with all this. Although it sounds good in theory; it doesn't work. Most patients who test positive by the Western Blot, the more accurate test, are negative by the ELISA. This means the scientists who set the bar for positivity for the ELISA had made a critical error. They set the bar too high and were screening out many patients who in fact had been exposed to Lyme. Instead of providing some false positive results, the ELISA was providing false negative results. This is the exact opposite of what the test was supposed to do! It was incorrectly calibrated. It is hard to fathom, but most physicians, including infectious disease experts, fail to understand the significance of this point. The bottom line is that most patients who are told their Lyme test is negative have only had an ELISA test, a test which can be clearly shown to be inadequate and insensitive. What about the Western Blot? This is also an imperfect test.

The Western Blot (WB) identifies small proteins circulating in the blood called immunoglobulins. Specifically, two classes of immunoglobulins are tested. The are called IgM and IgG. All things being equal, IgM shows up early in infections and IgG shows up later later. There are 14 IgM bands and 14 IgG bands for a total of 28. Most labs only report 13 bands. What happened to the other 15? This goes back to 1994. The CDC (Center for Disease Control) created what is called a national surveillance criteria. These particular bands were chosen for epidemiological, research purposes. They were never studied for the purposes of creating a definitive diagnostic test. And there is another reason. The Lyme vaccine which was being developed at that time would cause reactions at some of the key bands, so they were omitted from the assay. Hold on. The vaccine has been off the market for many years. No one has ever bothered to add back these key markers to the lab assays! With the WB we are only getting half a loaf. The most important bands react with proteins on the outer surface of the Lyme bacteria called. These proteins are called outer surface proteins, or Osps. Three key Osps have been identified. OspA, OspB and OspC. The 13 test WB only looks for one of these three key antibodies directed against Lyme! It seems the standard WB performed by most labs is quite lacking.

Doctors who are better informed about these issues order WB Lyme tests at specialty labs such as IgeneX, and get all 28 bands: better, but not perfect. Even this test probably misses about 30% of the cases. Frequently, IgeneX will report results which are borderline and recommend further testing. Why does this happen?

Doctors who are familiar with chronic Lyme disease know that it suppresses the immune response. Over time, patients who are chronically infected have lower and lower antibody responses, which over time may disappear.
This means that the sickest patients frequently have the most negative lab results. What to do?

It is a clinical diagnosis. Even the CDC says that lab reports cannot be relied upon. The physician actually has to reach into his black bag and pull out his stethoscope. A careful history and physical is the best way to make the diagnosis. There are other labs and radiographic tests which help as well. There are specific abnormalities on the physical exam which are very useful. The diagnosis can be tricky. It requires an understanding of the pathophysiology of the disease, the symptoms and all the diagnostic tests which add up to making the diagnosis. The diagnosis can be made reliably by a physician who is versed in many of its mysteries.
As controversial as diagnosis is, treatment is a whole other can of worms.

Lyme symptoms

Lyme disease follows from the bite of in infected Ixodes (deer) tick. Tick bites are usually not observed. These ticks are very small. The tick has a two year life cycle. It starts out as a larvae, the size of a period at the end of a sentence. These forms are sometimes infected and may transmit the illness. The second state, the nymph, is the size of a poppy seed, and is probably the most common form of the tick to transmit the illness. Even the adult ticks are quite small with the female somewhat larger than the male. People look for a classic "Bulls Eye" rash but this is rare. The Lyme rash is called Erythem Chronicum Migrans (ECM) and typically looks like a red patch resembling a sunburn, which can take any shape. Central clearing as in a bulls eye is usually absent or may occur after the rash has been present for many days. The acute illness may be associated with flu like symptoms, stiff neck, headache, fatigue and generalized aches and pains. A rash is frequently absent. So the disease has been called the "summer flu" at times. Initially typical blood tests used in the diagnosis are absent, so your physician will only make the correct diagnosis is he/she is astute and has a high index of suspicion. Acute Lyme has many other presentations as well, but what I am interested in here is chronic Lyme.

Patients with chronic Lyme can have symptoms all over the map. However, there is a consistent pattern, a recurring theme that I see in the vast majority of patients. It is this symptom complex that I would first like to describe. Typically, patients have had symptoms form many months, or more often years. They have seen a variety of physicians without a clear cut diagnosis having been made. Patients are frequently labeled with fibromyalgia, reactive arthritis, depression or non-specific chronic pain disorders. These patients complain of fatigue which does not improve with sleep. They generally have poor exercise tolerance, although this is a variable feature. They complain of generalized pains, which frequently move from location to location. The pains may be focused on joints, both small and large, muscles, tendons, ligaments or some combination of the above. The most consistent symptoms have to do with the nervous system. Lyme attacks all parts of the nervous system, including the brain. Patients may have headaches, a loss of balance, numbness and tingling of the extremities and progressive cognitive impairments. It is the cognitive impairments which most concern me as a clinician. It seems to start with word retrieval problems. Patients cannot recall names and numbers and other facts which previously were easily at their disposal. They complain of difficulty with concentration and short term memory. In some cases it seems like they have suddenly developed symptoms of attention deficit disorder. ADD is a lifetime disorder and does not develop suddenly. Patients describe "brain fog". Their cognitive processing slows down. They may have episodes of frank confusion and disorientation. Mood symptoms, including depression and irritability are common, but these symptoms frequently clear with antibiotics, not with psychotropic medication. A wide array of psychiatric symptoms have been linked to Lyme disease. Work related to this has been extensively published by Dr. Fallon, a psychiatrist and Lyme researcher at Columbia University in New York. These are the patients which I see over and over again in my practice. I will discuss patients with less common symptoms at a later point.

Lyme controversy

The IDSA (Infectious Disease Society of America) has reached an agreement with the Attorney General's office in Connecticut. They have agreed to re-convene a panel, with new physicians, to revisit the Lyme guidelines put forth in October, 2006. Lyme disease may be the most controversial disease in the history of American medicine. Mainstream medicine, as represented by the IDSA and the CDC have failed to acknowledge the existence of chronic Lyme disease. Chronic Lyme disease is an epidemic of untold proportions which affects a large chunk of the US population. The symptoms are insidious, progressive and disabling, and are generally not recognized by most physicians practicing in this country. The cause has been promoted by the Lyme Disease Association, a consumer advocacy group, and ILADS (International Lyme and Associated Disorder Society), a professional organization for health care providers.

Lyme is vector borne zoonosis. This means it is an animal based disease which is transmitted to humans by a third organism. Lyme is named for the town in Connecticut where the first cases were described in the mid 1970s. It is an infectious disease caused by a spirochete, a small spiral shaped bacteria, similar in configuration to the germ which causes syphilis. It is known to be transmitted by ticks, mostly known as deer ticks, predominantly Ixodes scapularis.

The Lyme spirochete bares the name Borrellia burgdorferi. It is named after Willie Burdorferi who was the first scientist to see the microbe under the microscope in 1981. It is called a new and emerging disease because we have known about it for such a short time. However, most researchers believe the disease has been around for thousands of years.

The IDSA model believes that Lyme is rare, hard to catch, a mild illness and easy to cure with short courses of antibiotics. The ILADS model believes that it is common, frequently causes a systemic multi system disease which is often disabling and progressive and that it is extremely difficult to treat.

Physicians who take chronic Lyme disease seriously are hard to find. They are scoffed at by their professional colleagues and frequently subject to lengthy investigations by state medical boards stemming from complaints by other physicians. Most doctors who treat chronic Lyme do not accept insurance plans and charge very high fees.

Two states have passed laws protecting doctors who treat chronic Lyme and their patients. These are Rhode Island and California. Physicians who treat this disease in other states do so at their professional peril. Many Lyme advocates see this as a witch hunt against Lyme physicians. Physicians who treat chronic Lyme frequently refer to themselves as Lyme literate physician, or LLMDs. They point out that hundreds of publications in well respected medical journals back up their positions with regard to the disease. I am a physician who treats hundreds of patients with Lyme disease. AT this very time the medical board in my state is investigating my treatment of patients. I have opened this blog to vent my frustrations and to perhaps help some patients who may encounter my thoughts.

Let me really start this blog with the story of the first patient I encountered with what I call chronic Lyme disease. I first met this patient over 10 years ago. He was in somewhat desperate straights. He had suffered with what was clearly diagnosed as acute Lyme with serious neurological complication. In fact he collapsed in an airport when he became nearly paralyzed on one side of his body. An examination of his blood and spinal fluid clearly showed acute Lyme involving his central nervous system. He was admitted to a hospital and given a course of IV antibiotics. He improved and was sent home. He developed recurrent neurological symptoms some days later and was treated with oral antibiotics. In fact, every time he stopped taking antibiotics he experienced a return of numbness and weakness and was concerned that his initial symptoms were recurring. Despite this, his infectious disease physician pronounced him cured and refused to give him further treatment. His primary care physician continued the antibiotics for some time but ultimately discontinued them insisting that he must be cured. When he came to my office for the first time he was desperate to a find a physician who would continue prescribing antibiotics. I had been informed, like my colleagues, that chronic Lyme was a myth, not real, much like chronic Epstein Barr infection. Nonetheless, I believe my patients unless there is compelling evidence to the contrary. I have continued his antibiotics for all these years and he has generally done well. Recently, as I have increased my knowledge of the disease I have begun an effort to cure him, if possible, using a "cocktail" of medications. More to come.