Lyme and Alzheimer's Disease

Dr. Alan McDonald, a a pathologist and leading Lyme researcher, has studied autopsied brains of Alzheimer victims. He hypothesized that Lyme like late stage syphilis could cause a late stage dementia 40 years after infection. He has cultured Lyme spirochetes from the brain tissue of
Alzheimer victims. He has discovered colonies of spirochetes called biofilms. These biofilms help promote the survival of spirochetes in hostile or adverse conditions. In these colonies the spiral form is replaced by cystic forms, granular dot forms and L-forms. Dr. MacDonald does not believe that all cases of Alheimer's ware caused by Lyme disease. However it may be a significant cause of the disease. His web site: www.molecularalzheimer.org shows images of his work and links to his research. Dr. MacDonald has also done work on the vertical transmission of Lyme disease from mother to infant. He has demonstrated Lyme in autopsies of still born infants. This research has tremendous implication and needs to be introduced into the public arena.

Babesia revisited

Lab testing is unreliable. Antibodies against Babesia strains are considered very significant by most Lyme doctors but dismissed by infectious disease specialists. The IDSA paradigm looks only at acute Babesiosis while the ILADS paradigm considers Babesia infection as part of the Lyme disease complex associated with chronic Lyme disease. Some patients report that they only improved after intensive treatment for Babesia. The best indicator is a pattern of symptoms. Patient with this co-infection have recurrent chills, fevers, malaise or flu like symptoms. Other patients are those with more typical Lyme symptoms who have not responded to Lyme therapy as expected. Treatment normally should not be for more than two to four months. There may be exceptions. In addition to Mepron and Zithromax, many patients and doctors report that the herbal supplement, Artemesia is very effective. Babesia should be considered in the treatment of Lyme patients but I still feel the focus should be Lyme.

Bartonella revisited

I am getting a lot of questions about Bartonella. Many Lyme docs view chronic Lyme as a complex in which Bartonella and Babesia play a crucial role. This is my take on Bartonella. It is primarily an opportunistic infection. This means it causes infection in persons with significant immunosuppression, such as those with HIV, AIDS. Everyone is exposed to Bartonella on a regular basis. It comes from fleas, flies and mosquitoes in addition to ticks. If one's immune system is functioning reasonably well, I don't believe it should be a major player. It is a typical gram negative bacteria. It does not possess all the tricks of Lyme to circumvent the immune system. It may be hard to eradicate because we are constantly re-exposed to it. The conventional wisdom in Lyme therapy is that co-infections should be addressed when patients do not respond to Lyme therapy as expected. My experience has been that many patients are undertreated for Lyme. For example intravenous antibiotics are not used. And these same patients are extensively treated for Bartonella without getting better. Intensive Lyme therapy should probably include intravenous antibiotics before one starts to look seriously at Bartonella as an explanation for poor clinical response. It may make sense at some point to try Lyme drugs which are also known to be active against Bartonella: two for the price of one. For example Cipro covers both germs whereas Levaquin does not cover Lyme well. Rifampin covers Lyme, Bartonella and CPN. It is a useful add on. Bactrim only covers Bartonella so I do not use it.

Lyme and the gallbladder

This an area of Lyme medicine which deserves more attention. Many Lyme patients end up with removal of the gallbladder. Lyme can infect the wall of the gallbladder and cause chronic inflammation. This appears to happen with increased frequency when there is also evidence of Salmonella infection. In the past most gallbladder disease was related to gall stones. There has been a change. Most patients with gallbladder disease no longer have stones; they have chronic inflammation of the gallbladder. Patients with gallbladder disease have recurrent bouts of abdominal pain which starts out mild but gradually builds up to severe pain. The pain may be located in the right upper abdomen or be generalized to the entire abdomen. Nausea and vomiting may occur. In the past doctors have ordered a sonogram to evaluated the gallbladder. When the problem is related to infection this test will be normal. The diagnosis is made with a nuclear medicine scan called a HIDA scan, with the administration of a hormone called CCK. The hormone injection will likely cause the symptoms to recur and the test will showed a low ejection fraction, indicating abnormal functioning of the gallbladder. Generally, successful treatment requires removal of the gallbladder which can be done with a minimally invasive laparoscope. The fact that intravenous Rocephin is known to cause gallbladder attacks may suggest that this is a sort of Herxheimer reaction involving a gallbladder which is already infected with Lyme bacteria.

What are objective markers of chronic Lyme disease?

• Changes in mental status per physician exam
• Neurological abnormalities on careful exam: These include: a deviated uvula and or soft palate, decreased sensation on one side of the face, asymmetry of the face, restricted movement of eyes with extreme lateral gaze, hearing loss, deviation of the tongue with protrusion, Hoffman or Babinsky reflexes, decreased sensation to pinprick of the extremities in a "stocking and glove" pattern, a loss of vibration sense in the feet compared with the hands.
• A low CD57 count
• Some Western Blot bands which are positive or indeterminate on an IgneX test, in specific double asterisk locations
• A Lyme C6 peptide antibody index which exceeds 0.1
• Antibodies for co-infections such as Babesia, Ehrlychia and Bartonella
• Elevated markers of inflammation, including: sed rate, CRP, C3a and C4a
• Mild elevation of markers for auto-immune disease including: rheumatoid factor and ANA
• Low or borderline low vitamin B12 and folic acid
• A reversal of vitamin D levels with low vitamin D OH 25 and high vitamin D 1,25
• An abnormal brain MRI showing non-specific white matter disease
• An abnormal brain SPECT scan show changes in blood flow in the brain

All of my chronic Lyme patients have some combination of the objective markers for the disease as listed above. If one only considers CDC surveillance criteria as objective confirmation, then I believe more than 90% of cases will be missed. The testing is complex, expensive and cumbersome. It is only indicated when there are clear cut symptoms which suggest the diagnosis of chronic Lyme disease.

ILADS and Lyme symptoms

I am concerned about lists of symptoms listed by ILADS and others associated with chronic Lyme disease. My sense is that these lists are misleading. Lyme doctors are already practicing outside the box of mainstream medicine. I fear that all inclusive lists of possible symptoms diminish the credibility of practitioners of this new paradigm. It provides an opening for critics who will say: those doctors think everyone has Lyme disease. If we look at the symptom list, it includes a huge percentage of patients who are treated in a primary care office, most of whom do not have Lyme disease. The Lyme symptoms listed with the ILADS guidelines include: fatigue, low grade fevers, night sweats, sore throat, swollen glands, stiff neck, migrating joint pains, stiffness, arthritis, muscle pain, chest pain and palpitations, abdominal pain, nausea, diarrhea, sleep disturbance, poor concentration and memory loss, irritability and mood swings, depression, back pain, blurred vision and eye pain, jaw pain, testicular and pelvic pain, tinnitus (ringing in the ears), vertigo, cranial nerve disturbance, headache, hotheadedness and dizziness. There are many causes for most of these symptoms. When doctors evaluate a patient they first ask for a chief complaint. If a patient has a sore throat and swollen glands one first thinks about viral pharyngitis or Strep infection. Doctors in training frequently hear the expression: When you hear hoof beats in Central Park (New York) you think of horses not zebras. When a physician suggest an unusual diagnosis based upon a common complaint he is said to be looking for zebras. I do not deny that these symptoms and many others may be seen in chronic Lyme patients, but such a list is misleading. Chronic Lyme is a multi-system disorder that presents in a predictable way with a clear cut pattern. Of course there are exceptions to every rule, but zebras should only be considered when other diagnoses have been excluded. As has been said regard to science: When all the likely explanations have been excluded that that which remains, no matter how unlikely must be the explanation. Chronic Lyme patients have: fatigue, cognitive changes, numbness and tingling and muscle, joint, tendon or ligament pain. This constellation of symptoms is reliable in my experience. Patients with a chief complaint of a primary Lyme syptom such as joint pain or numbness and tingling should have Lyme diseased moved up on the list of possible diagnoses.Many other symptoms may exist, but they should be in addition to the basic symptom complex. If the only complaint is depression or back pain for example, both listed by ILADS as Lyme symptoms, Lyme disease should not be considered except as a zebra.
ILADS states that these symptoms may present without objective markers. Based on my experience this is not true. I believe that an expanded list of objective markers shows some abnormalities virtually in 100% of cases. In fact, a complete absence of objective markers would lead me to doubt the diagnosis of Lyme disease.

I have Lyme: should my kids be tested?

Only people who are symptomatic or sick should be tested. It can be challenging to decide if your child has symptoms. The symptoms of Lyme disease vary so much. There may be a tendency to over analyze things that are normal or ignore things that are abnormal. Whereas some parents are dismissive of symptoms, others may be overly paranoid. A child may have ADD. If it runs in the family then no further evaluation is required. If it atypical: it comes on later in childhood and seems to be progressive and there is no family history, then Lyme should be in the differential list of possibilities. Psychiatric and neurological symptoms do occur more frequently in children with Lyme disease. I have seen learning disabilities, tics, mood swings. anxiety, depression, OCD behavior and other neurological symptoms improve when Lyme is treated. Kids should not complain of joint pain and excessive fatigue. There is probably no such thing as "growing pains."
This would affect bones and muscles, not joints, if it were to occur. Children without symptoms should never be tested. Remember two things: testing is very difficult, controversial, and unreliable, and when patients are treated for Lyme disease, the treatment is continued until symptoms resolve. Someone who is without symptoms should not be treated no matter what the tests show. There is no way to prevent the appearance of future symptoms by treating a positive test. So testing people without symptoms is without benefit and could be potentially harmful if children are treated when it is not appropriate.

Treatment Plans

For the average patients with chronic Lyme disease I start treatment with two antibiotics. I pick one from column A and one from column B. In the first group are Amoxicillin and Ceftin. Amoxicillin is dosed at one gram twice daily or more. Ceftin is dosed at 500 mg twice daily. In the second group are Doxycyline, Biaxin and Zithromax. The dose for Doxy is 200 mg twice daily, the Biaxin is dosed 500 mg twice daily and the Zithromax is dosed 500 mg daily. In the warmer months Doxy is avoided due to photosensitivity. When Biaxin or Zithromax is chosen I add Plaquenil 200 mg twice daily to the regimen to optimize the effectiveness of these medicines.
Patients are instructed to take probiotics with the regimens. I typically recommend a probiotic complex with Acidophilus, such as that found at Whole Foods, one or two tablets twice daily. Initially I like to see patients back in one month. A Herxheimer reaction is expected and this is explained to the patient. If diarrhea is an issue further probiotic coverage with Sachromyes is useful. If muscle pain is prominent enzyme therapy with Wobenzym-N may be helpful. If cognitive issues are prominent a bile acid resin such as Questran one pack twice daily or Welchol three tablets twice daily may be added. If Vitamin D toxicity is a major issue avoidance of the sun and dairy products is recommended and Benicar 20 to 40 mg may be added. Patients are followed at various intervals to assess progress. When the patient is much improved Flagyl is added for cyst coverage. I typically prescribe 250 to 500 mg once daily and may increase the dose to twice daily. Patients are treated until symptoms resolve 100% and then continued for two additional months. If Babesia is strongly suspected by serology or clinical symptoms which sound malaria like, or when the patient fails to respond to treatment as outlined above then treatment is switched to focus on this co-infection. The best regiment is Mepron 750 mg twice daily with Zithromax 600 mg daily. This is continued for at least 3 weeks and for no longer than 4 months. Yeast infections which occur secondary to antibiotics are treated with Diflucan 100 or 200 mg daily for several weeks. Ehylichia infections are treated with Doxycyline as outlined above for two months. If it does not respond well Rifampin 300 mg daily is added. If Bartonella is clearly present I treat with Cipro 250 mg to 500 mg twice daily for two months. Bartonella should also respond to other drugs including Zithromax and Rifampin. At times adding Rifampin to Lyme regiments as described above may be helpful. When high titers for Chlamydia pneumonia are present I combine Amoxicillin with Doxy or Zithro with Flagyl and frequently Rifampin. If patients have severe disease with significant brain involvement I use intravenous antibiotics. Intravenous antibiotics may also be considered when patients respond poorly to 4 to 6 months of oral antibiotics. Typically I prescribe Rocephin 2 gm daily for at least 3 months if possible. I will continue Zithro, Doxy and Flagyl orally if the patient is taking these antibiotics. When patients are allergic to Rocephin I sometimes use intravenous Zithromax 500 mg daily. Another treatment is intravenous Primaxin. I have not used it since is requires multiple daily dosing. Another drug which may have good activity for Lyme is Cleocin, Clindamycin. Some physicians have used it intravenously and orally. It also has some activity against Babesia. So far I have not used this drug either. It is associated with severe diarrhea, Clostridia difficile. This outlines the general process of treatment. It corresponds roughly with ILADS guidelines and methods used by many ILADS affiliated physicians. I have found that overall the treatments above are effective in the vast majority of patients. The duration of treatment varies tremendously. Some patients may improve after 6 month; most need treatment for between 18 months to many years. The best metric for deciding when to stop therapy is patient symptoms.

Vertical and Horizontal

Vertical transmission of a disease means that it can be passed through the placenta from mother to child during pregnancy. This mode of Lyme transmission makes sense to me. I see a lot of families where many of the children are infected, as well as the mother. Currently, there is family with 4 daughters, all of whom have Lyme disease. Their mother died at an early age of atypical multiple sclerosis. The family always suspected something else was going on. Unfortunately, many doctors diagnosis MS on the basis of MRI findings. Today, on my desk, a brain MRI report states that the findings are compatible with Lyme, but that MS is more likely. The patient has Lyme. Syphilis may be passed vertically from mother to child and cause a congenital syndrome seen at birth. Lyme does not cause obvious abnormalities seen at birth, to the best of our knowledge. It is a slow infection. Symptoms develop over time. Children become symptomatic at various ages from pre-school to early adulthood. Still based on what is known of the biological behavior of Borrelia and other spirochetes, it makes sense that vertical transmission occurs.

Horizontal transmission refers to person to person transmission of an infectious disease. Some believe that Lyme may be sexually transmitted. I believe this is false. Syphilis is transmitted via an open sore on the skin, a chancre with spread of the spirochete through the thin skin or mucous membranes of the genitalia. Lyme generally lives deep in tissues. The rashes which may have active spirochetes near the surface occur on the extremities and trunk. It is nearly impossible to find Lyme bacteria in any body fluids. Other sexually transmitted organisms are present in blood and body fluids. This is not the case for Lyme. Lyme DNA has been shown to be excreted through the urinary tract. After an antibiotic challenge urine PCR testing for Lyme DNA may be positive. This does not mean that intact viable organisms are present in genital secretions. In addition, there are specific factors in the tick bite and in tick saliva which have been shown to be important for infection to occur. Other insects like mosquitoes and flies may be infected with Borrelia, but there is no evidence that bites from these insects transmit the disease to humans. Lyme has a difficult time penetrating the skin barrier. But once it is in the body it has the ability to easily spread to tissues throughout the body. This is why vertical transmission makes sense and horizontal does not.

Lyme and pain management

Many patients who eventually come to see me for a Lyme evaluation have been treated in pain clinics for years. Many take large amounts of opiates (narcotic) medications. Many "Lyme docs" don't want to treat pain and refer patients to such clinics. Pain clinics are typically run by anesthesiologists or rehabilitation specialists. Many of these clinics specialize on injection techniques used to treat localized pain syndromes. Many use medications for chronic pain patients as well. I like to treat pain; so I will also address this aspect of the patent's problem. It is my goal to treat the underlying cause of pain, for example Lyme disease, so that hopeful the pain medicines can be decreased or eliminated. In the recent past many physicians were reluctant to treat non cancer pain with narcotics because of the fear of addiction. Thankfully, this is a paradigm which has largely changed. Pain is one thing that doctors can treat. Lowering pain levels allows for a better quality of life. It frequently allows the patient to increase activity and exercise which is part of the healing in Lyme disease. Chronic pain is associated with adrenal fatigue, cytokine release and immune suppression, all of which are detrimental to healing Lyme. And of course, not treating pain just is not kind. Addiction is a psychological syndrome, not a physical one. Addicts use a substance in a compulsive, detrimental way with a negative impact on the well being of the user. Patients who use pain medications in order to function normally are using pain medications in a therapeutic manner. Narcotics cause constipation this needs to be addressed with bowel stimulants. Narcotics can cause fatigue and this can be countered with stimulants or Provigil.
A patient who is using narcotics appropriately may develop physical dependence. This means that withdrawal symptoms will occur if the medicine is abruptly withdrawn. In this case the dose of medicine needs to be slowly reduced. This should not be confused with addiction which is a psychological disorder. Pain medicines are available in a variety of forms and doses. I will not elaborate further in this Blog. I do feel it is important to have pain managed. This does not cause addiction, except in very rare cases, and is very important in the healing process.

Lyme and sleep

Most discussions about late Lyme mention "sleep disorder" as one of the symptoms. Certainly patients can have a wide variety of psychiatric symptoms including depression, anxiety and mood swings which are typically associated with disturbances in sleep. The use of sleep medicines or hypnotics may be helpful. Good quality sleep is important.
What I am most concerned about is a disorder called sleep apnea. Sleep apnea is more common in Lyme patients in my experience. It is classically associated with obesity, snoring and fatigue. But these signs may be absent. Many Lyme patients have neurologic dysfunction of the palate and uvula which may contribute to this disorder. In addition, brain abnormalities of Lyme may be a contributing factor. Sleep apnea is mostly peripheral, due to floppiness of the soft tissues in the back of the throat; but it may also be central, due to brain dysfunction. Patients with sleep apnea have severe fatigue, a symptom commonly reported in Lyme disease. These patients also have cognitive difficulties which may be similar to those seen in Lyme. Patients with sleep apnea have been shown to have abnormal SPECT scans with decreased blood flow to the frontal lobes of the brain. This is associated with poor executive function. This creates a syndrome which mimics attention deficit disorder, a finding which is also common in Lyme patients. Patients who are chronically deprived of deep sleep called stage 4 sleep, associated with delta waves on the EEG, electroencephalograph, have been shown to develop diffuse muscle pain which resembles fibromyalgia, another common Lyme syndrome. Many researches have described fibromyalgia as a syndrome related to a sleep disorder.Obstructive sleep apnea occurs when patients enter deep sleep, stage 4 and the airway closes off. The individual is unable to exhale. This may causes a decrease in respiration (hypopnea) or complete apnea, a cessation of breathing. The person has an arousal, of which he is unaware, which puts him in a more superficial stage of sleep and allows the closed airway to open again. The condition is frequently associated with low blood oxygen levels. It puts tremendous stress on the heart and is associated with hypertension and heart failure. The fatigue is profound and may cause day time drowsiness which includes falling asleep while driving. Sleep apnea is also associated with activation of the immune system. Markers of inflammation, including cytokines are elevated in these patients.
Patients with fatigue, day time drowsiness, snoring, hypertension and possibly ADD should have sleep studies. If narcolepsy is suspected another test called a multiple sleep latency test is also necessary. A full discussion of this and other related sleep disorders is outside the scope of this Blog. But I recommend that all patients with these symptoms have sleep disorders excluded as part of their evaluation.

Federal law and a disconnect

Thanks again to one of my patients for enlightening me. President Bush signed Public Law 107-116 in 2002. The law states that laboratory testing for Lyme is very poor. It has led to misdiagnosis and delayed therapy. The law says that the CDC case surveillance definition is not to be used for diagnosis. The House of Representatives Committee notes the widespread misuse of the current Lyme disease case definition. The CDC does state that 'this surveillance case definition was developed for the national reporting of Lyme disease: it is NOT appropriate for clinical diagnosis,' the definition is reportedly misused as a standard of care for healthcare reimbursement, product (test) development, medical licensing hearings, and other legal cases. The CDC was encouraged to aggressively pursue and correct the misuse of this definition. To date, these recommendations have been ignored.

99% of practicing physicians misuse the surveillance case definition and are unaware of this law. Mill labs, like Labcorp and Quest provide only the 13 CDC bands. In fact they have thus far been unwilling to provide this missing 15 bands even though the assay contains these values.

It is hard to understand why this information has not been disseminated despite the passage of 5 years.

I hear the new documentary on Lyme disease is very good and plan on seeing it.

Ehrlichia

I apologize for my lousy spelling. I have spelling this one and other things wrong. Sequoia notes a high incidence of antibodies to this Lyme co-infection in Peru. This does not surprise me. Lyme is a world wide epidemic. The vectors vary slightly as does the genus of Borrelia. Ehrlichia serology is probably more reliable than Lyme antibody testing. Testing for Borrelia remains a problem throughout the world. The ELISA has not been validated. The Western Blots are incomplete. Even when all 24 bands are tested it may still miss a third of the cases. The best test is probably the C6 peptide antibody index for Lyme. Unfortunately, it has only been studied for acute, not chronic forms of the infection. If the cut off point for a positive reaction was set at 0.1 rather than 0.9 it might be very helpful.Antigenic variation of the Lyme strains in other countries may make our serological tests completely invalid. The Ehrlichia strain reported in Peru is the same one we see in the US. Lyme is common in places with temperate climates like that of Peru and the US. It is not seen in tropical areas (the same areas which have no MS?). Perhaps the people in Peru are suffering with Lyme and are not being diagnoses or treated.

Rash

It is early summer. I am seeing a lot of Lyme rashes. They are called Erythema Chronicum Migrans. They are not bulls eye rashes. The are generally red rashes with a circumscribed border, but not necessarily round. Most rashes are on the upper and lower extremities or the trunk. They can occur anywhere on the skin.The outside borders or the rashes may be more active and there may be a tendency for central clearing, but is usually not seen until the rash has been present for several weeks. Some rashes have an atypical color. They can appear purplish rather than red. The rashes can be flat, but may be slightly raised. Most of the rashes are large, greater than 5cm in diameter, but the sizes vary. Very rarely is a history of tick bite recalled. Since many if not most cases of Lyme disease do not present with this rash, one can imagining that many folks are presently getting infected without any awareness. Because of the increased awareness in the public, most patients come in early. Most have no symptoms except for the rash. Some have mild flu like symptoms, headache, stiff neck and mild muscle and joint pain. This is stage one Lyme disease. Since there are many patients who have been treated for stage one disease who still develop chronic Lyme down the road I like to err on the side of over aggressive treatment. Although there is no scientific basis for this, I like to treat with Doxycycline and Amoxicillin for 30 days. I would continue treatment if any traces of the rash persist. For patients for whom photosensitivity is likely to be a problem I treat with Amoxicillin or Ceftin alone for 30 days. Since other drugs commonly used for chronic Lyme, the macrolides, Zithromax and Biaxin really require concomitant Plaquenil, I do not use these drugs, it seems like too much for stage on Lyme which should respond to a singe antibiotic agent. Some doctors still treat for 10 days, two weeks or even 6 weeks. I use high doses and treat for 30 days. I tell the patients the symptoms of persistent Lyme and ask them to come back in if any of these symptoms develop. It is a mistake to do blood work in these patients. Lyme antibodies may not turn positive for 4 to 6 weeks. C6 peptide antibodies may turn positive more quickly. Some doctors check C3a and C4a as evidence of acute infection. I think this is a clinical diagnosis and do not recommend lab testing which will be unhelpful or even misleading.

What are the basic facts about Lyme disease in a nutshell?

The Lyme bacteria seen in North America is called Borrelia burdorferi. Borrelia is the genus and burdorferi is the species. It is a small spiral shaped bacteria which has the abitlity to morph into a cystic form, which is spore like, and an L-form or spheroblast, which is intracellular (lives inside cells). It is carried by ticks of the Ixodes genus. The organism resides in mammals like deer and white footed mice. These are called the reservoir. The vehicle, tick in this case, which transmits the infection from the reservoir hosts to the human hosts is called a vector. Since it a bacteria which causes disease it is called pathogenic. Many other species of bacteria do not cause disease in humans. The spirochete responsible for Lyme disease has been around for thousands of years, but Lyme disease is considered a new and emerging illness. In the 1970s a group of children with what looked like an epidemic of juvenile rheumatoid arthritis were studied by doctors called epidemiologists along with other experts. It was determined that the cause was a vector borne illness. The bacteria was not identified until 1982 when Dr. Burderferi first saw the spirochete under the microscope. This initial outbreak occurred in Lyme Connecticut, hence the name. At first Lyme was associated with arthritis and its characteristic rash. Over time there was an increased understanding of its diverse clinical manifestations and it was seen as a multi system disease. Since its discovery in the 1980s much work has been done to study the basic science of this microorganism. Much has been learned about its structure, life cycle and biological features. Thousands of studies have been published in major medical journals over the last 30 years. Much of the science indicates that it is hard to diagnose and is resistant to eradication with antibiotics. There have only been a few clinical studies which address the effects of long term antibiotics on persistent Lyme symptoms. The most recent studies support the use of long term antibiotics.

Co-infections such as Ehrlychia, Babesia and Bartonella are even newer than Lyme. The importance of these infections and the need to treat them aggressively remains an area of much debate.

The tick vectors, Ixodes, are frequently called deer ticks. This is a bit misleading. Adult ticks are frequently found on deer but most human infections are caused by immature forms of the tick called nymphs. The tick itself has a two year life cycle. Larval forms are the size of a dot; nymph forms are the size of a poppy seed and adult forms which are visible, but still very small, may all transmit Lyme disease. It is generally believed that the tick must be in contact with the skin for 48 hours to transmit the infection. But this too is open for debate. In general, the tick bites are not seen. When they are observed it may not be possible to accurately gauge how long the tick was on the skin. For every tick that is seen they may be many more which go unobserved.

How do you know when I'm cured and I can stop my antibiotics?

There is no easy answer. This question comes up every day and I'm afraid the answer's I give leave the patients confused and befuddled. Chronic Lyme is a fuzzy area. There is not reliable indicator of cure. Most clinicians think of remission rather than cure. As a general rule of thumb, antibiotics are continued until the patient feels 100% better, and then continued for two more months. If the patient does not relapse when the antibiotics are stopped then the disease is in remission. If symptoms return then further antibiotic treatment is necessary. When relapse occurs there are differing patterns. It may occur almost immediately, within days or weeks, or it may occur in a more insidious fashion over many months. Relapses vary as well. In some patients cognitive improvements may persist while joint pain returns where in other patient's the cognitive impairments are the only thing to return. It may be difficult to distinguish a relapse from a separate new infection. It is also possible to have relapses triggered by other infections such as mononucleosis. It is impossible to know how long the antibiotics will be necessary for a given patient. Those patients who respond quickly and vigorously to antibiotic treatment are usually able to stop drugs sooner. Combination antibiotic therapy may decrease the duration of treatment. If medications which target cysts are added some patients will go into remission more quickly. ILADS reports that chronic Lyme patients are frequently treated for one to four years. Dr. Jones, the leading pediatric Lyme authority has reported treatment durations of 3 to 7 years. In my experience, treatment has varied from 6 months to indefinite. Many patients are better after 9 months a year, 18 months or two years. Others require indefinite therapy. Labs don't help much. It has been reported the improvement in CD57 levels is a marker of improvement. This has not been the case in experience. Antibody levels and bands are of little help. I like to see improvement in metabolic markers. If vitamin levels, B12, folate and D normalize, this is a good marker that the disease is no longer active. Clinical exams may improve, but this is not a great marker. Peripheral neuropathy may persist when the patient is better. It may continue to improve over a period of months or years after antibiotics have been stopped. Ultimately each patient is different. Many factors come into play: Individual immune responses, duration of illness, organ involvement and other unknown factors. There is no assay which can quantify the amount of spirochete in the bodies of patients. So, duration is individualized and based primarily on the patient's symptoms.

Who are the Lyme specialists?

There is no such thing as a Lyme specialists. There are infectious disease specialists. These physicians believe they are the ultimate authority regarding all infections, including Lyme disease. Nearly 100% f ollow a strict IDSA interpretation. They don't believe in chronic Lyme disease. If you make an appointment at Johns Hopkins, Harvard or the Mayo Clinic to see a "Lyme" specialist, you will see a doctor who doesn't believe in chronic Lyme disease. You will see a doctor who doesn't order Lyme Western blots, Lyme C6 peptide antibody index scores, complement levels, vitamin D levels, CD57 counts or co-infection panels. Physicians who have established themselves as "Lyme literate MDs" are a diverse group of practitioners scattered about the country. They all operate out of paradigms which vary with one another. They generally believe in chronic Lyme, but in other ways disagree. Some use IV antibiotics, others will not. Some use herbs and alternative medicines, others do not. Some focus on co-infections. Some believe that Bartonella is the key to chronic Lyme morbidity, while others emphasize Babesiosis. Others look for a host of other infections including Epstein Barr virus, Herpes virus 6, parasites and others. Some are focused on Chlamydia and Mycoplasma yet others think its all about Lyme, stupid. One thing can be said for IDSA doctors. They all agree; even though they are all wrong! So I am sorry to report; there are no true Lyme specialists. There are doctors out there in the community doing the best they can to treat this vexing disease or disease complex. Patients vary tremendously in their responses to different approaches. For now medicine will remain an art more than a science. Eventually, as there is a consensus and a broader understanding of Lyme a specialty of Lyme medicine will be developed. At this moment this dream is far off.

Fibromyalgia revisited

Case study: A 43 year old woman complains of fibromyalgia for years. She has a complex medical history. She has had fibromyalgia for many years. She has also been treated for ADD, attention deficit disorder. she has a history of bleeding peptic ulcers which has required a partial gastrectomy. Her complaints include: fatigue, anorexia and weight loss, pain- muscles and joints, nausea, brain fog and cognitive dysfunction. She has been on narcotics (opioids) for years to control her pain. One way her fibromyalgia has been treated is with trigger point injections. She comes into the office every two weeks and has her tender points injected with an anesthetic solution. This has offered some pain relief but has not been curative. Numerous Lyme Western Blot tests have been negative. An IgeneX WB was negative, but suggestive. There was a reaction at the 41band with indeterminate reactions at two critical bands, 31 and 39. Her C6 peptide was 0.29. Her Chlamydia pneumonia IgG titer was elevated at 512. Her CD57 levels have been low, ranging from 30 to 60. She has severe vitamin D reversal, with OH 25 less than 7 and 1,25 75. She has a low IgA level of 53. The celiac antibody profile is negative. But the antibodies are not 0. A Lyme co-infection panel showed an elevated IgG titer 1:40 to Babesia microti.

After 2 years of treatment she is finally getting much better. What has worked and why.
Best antibiotics: Amoxicillin, Zithromax, Flagyl. Chronic Lyme is probably a factor. Babesia antibodies show exposure to Ixodes, the Lyme vector. Her WBs are borderline. The C6 is elevated in my experience. Patients who test positive for Lyme by WB typically have a C6 index between 0.2 and 0.3. The higher cut off point0f 0.9 (per lab reports) relates only to acute Lyme disease. No one has studied C6 antibody in chronic Lyme. The test is so specific that any level over 0.1 suggests exposure to the Lyme organism. (This is based on discussions I have had with researches who have developed the test- this of course is unpublished) The vitamin D dysregulation favors the Marshall hypothesis that L-forms of Borrelia contribute to this abnormality which alters immune function to favor the intracellular bacteria. The CPN titer is probably significant. I have observed that patients who test positive for multiple bacteria associated with L-forms tend to have more vitamin D dysregulation. CPN has been highly associated with fibromyalgia as well. This triple antibiotic cocktail is relatively effective for CPN. Adding Rifampin may be helpful. I would avoid Stratton's recommendation to use INH: liver toxic.
Other drugs: Benicar has made a big difference. I use it only at low doses, 20mg or 40mg. It helps balance vitamin D. The higher doses seem potentially dangerous to me.
Mepron: It is hard to know if the Babesia infection is active, but a 2 month course of this agent, along with Zithromax seemed reasonable. I asked about recurrent flu like symptoms and got a positive response. I think it helped.
Wobenzym-N: Has been effective in reducing pain.
Questran (Cholestyramine): Has been effective with improvements in cognitive dysfunction.
Gluten free diet: She never got stool test for gluten sensitivity from Enterolab. She tried this diet on an empiric basis. This has made a huge difference in her symptoms.
She has required pain medications during the treatment, but she is beginning to taper off.
Key Points: Fibromyalgia. Lyme, Babesia and CPN infection. Vitamin D dysregulation. Gluten sensitivity. Treatment as outlined above effective over a period of two years.

Bad luck?

When I was in medical school there were many witty aphorisms tossed about. The eager students voraciously snapped up these nuggets of wisdom. As a third year medical student your introduction to clinical medicine is immersion in a world of critically ill and dieing patients. But we were told that 15% of the population got 85% of the disease. This helped us feel secure that we would not suffer the fate of the unfortunate patients, because we were in the 85%. There were a lot of questions asking for statistics. It was called "pimping." Overtired, anxious students asked questions from our elders the answers to which we had no way of knowing. I think the theory was that anxiety produced by this method would compensate for the inability of a sleep deprived brain to learn well. A sagacious second year resident said the right answer was always 15% or 85%. I met one of those "unlucky" patients in July 2006. She must have been in the mythical 15%.

She was 24 years old. She already had a history of polyneuropathy, pleurisy, pericarditis, tranverse myelitis, migraines, possible seizure disorder, mysterious movement disorder, gallbladder disease requiring surgical removal and a host of other mysterious complaints. When I first met her she complained of vertigo, numbness of hands, face and the lower one half of her body, headaches and joint pain. Subsequently other complaints emerged including profound fatigue and cognitive deficits. She experienced "brain fog" as well as memory loss and slow cognitive processing. Her initial labs showed positive exposure to Babesia microti, but a negative standard Lyme Western Blot.
Her movement disorder seemed typical of Parkinson's. She had rigidity and tremor. Two neurologist felt it was not Parkinson's disease, but a third agreed with my diagnosis. She responded to drugs used to treat Parkinson's. After treatment for Babesiosis she was treated for chronic Lyme disease with a cocktail of antibiotics. She quickly experienced improvement in memory and concentration, joint pain and numbness and tingling. She became pregnant at the beginning of 2007 causing a disruption in her treatment. During the pregnancy she did well. Even the Parkinson's improved somewhat. After delivery everything quickly got worse. The arthritis, forgetfulness, Parkinson's and fatigue were all worse. Repeat lab testing finally confirmed exposure to Lyme by IgeneX criteria. IV Rocephin was given. She had an allergic reaction to the first dose. It was switched to IV Zithromax. It didn't make a dramatic difference, but over time she showed gradual improvement. She has been continued on cocktails of oral antibiotics over this time. I saw her today and she is moving to Washington state in one month. She continues to have fatigue, which comes and goes. Her Joint pain is better, but it also comes and goes. Her memory and cognitive processes are much better. She doesn't remember how bad it was before. Her husbands states that she is almost back to normal. The Parkinson's is stable and controlled on medicine. She feels well enough to go back to work for the first time in years. The most effective antibiotics for her have been: Ceftin, Zithromax, Flagyl and Rifampin along with Plaquenil. Her Babesia has been treated with Mepron. She has Vitamin D dysregulation and was tried on a low dose of Benicar which was discontinued due to excessive "Herxing." In summary she is slowly getting better in every way except the Parkinsons which is static. All of her problems are related to chronic Lyme infection. I have one other patient who developed Parkinson's disease at a young age along with Lyme disease. Unfortunately, this has not responded when the Lyme was treated. I believe the brain damage is permanent in this regard. She has been unfortunate but is much improved since our first meeting. She will need much continued care in Washington state, for how lonng I do not know. Good luck.

Maryland Department of Health: Alternative views

This anonymous blogger, called Sequoia has been a tremendous help to me. It turns out that the Maryland State Health Department commissioned a task force to study the issue Lyme disease and vector borne illness in the state.
The "Lyme Disease Subcommittee of the Maryland Vector-Borne Disease Inter agency Task Force" issued a paper in March 2007. The title was: Recommendations for the Development of a Strategic Plan for Lyme Disease Prevention and Control in Maryland. It lists "challenges" which include: 1) Frequent difficulty in clinical recognition and laboratory assessments of LD, due to absence of typical LD clinical signs at presentation, or presentation with late LD symptoms.
2) Varying approaches within the medical community regarding best practices for the treatment of LD due to the absence of a consensus. 3) PROVIDER RELUCTANCE TO TREAT PATIENTS FOR LD DUE TO CONCERNS ABOUT LICENCING PENALTIES OR ADVERSE LEGAL ACTION. The report discusses both IDSA and ILADS guidelines. It reports that the Maryland Board of Physicians announced in newsletter in 2005 that "it does not target or restrict the treatment of LD."

It is imperative that the general community of physicians become aware of these controversies and recommendations.

Help. I was bitten by a deer tick!

Since a very high percentage of Ixodes ticks carry Lyme and other tick borne germs I believe that all bites should be treated. Some sources have suggested that a single dose of Doxycycine, 200mg is effective. Since I have seen patients develop Lyme despite this Therapy I treat for one week. Typically Doxycline 100mg twice daily or Amoxicillin 875mg twice daily will be effective. Removal of the tick with a tweezers by firmly gripping the head is effective. The wound should be treated with an antiseptic. If there is persistent redness or signs of infection at the bite site I extend the course of antibiotics until this completely resolves.

What is adrenal fatigue?

Another unresolved controversy. This diagnosis is not accepted by mainstream medicine. The adrenal gland manufactures and releases hormones, messenger molecules, which have far reaching effects on other areas of the body. The hormone cortisol regulates immune function, brain function, metabolism and many other body processes and functions. The extreme form of adrenal insufficiency is called Addison's disease This due to a primary failure of the adrenal gland to produce cortisol. The other accepted form of adrenal insufficiency is called secondary adrenal insufficiency. This is mostly associated with excessive use of adrenal cortico-steroids, like Prednisone, which has caused the body to decrease its own production of cortisol. Serum cortisol do not correlate with cortisol deficiency since most of the hormone is bound to tissues. The ACTH challenge is used to make the diagnosis. The adrenal stimulating hormone made by the pituitary gland in the brain is administered by injection. The amount of cortisol is measured to see if the adrenal gland has the "reserve" ability to respond appropriately to this stimulus. Proponents of adrenal fatigue argue that this test is insensitive. They instead do a saliva test, which generally shows low levels of cortisone and confirms their hypothesis. The test is not accepted by mainstream medicine. The adrenal gland makes several hormones. It does respond to stress. These hormones have been called stress hormones. Severe physical stress can place demands on the adrenal gland which exceed its ability to act. Severely ill patients with overwhelming sepsis for example, can experience acute adrenal insufficiency requiring supplementation. There is the notion that chronic stress leads to low level adrenal fatigue. This has been associated with low energy, fatigue, depression, pains and other symptoms which dovetail with those seen in chronic Lyme. The administration of cortisol like medications does give people an enhanced sense of well being and increased energy. The down side is that these steroids have many side effects and cause long term harm to the patient; and the long term use of these drugs can ironically cause adrenal insufficiency, they very disease they are supposed to be treating. Some people take DHEA, a precursor steroid molecule. Measurements of this hormone are sometimes used as a surrogate marker for adrenal fatigue. There is no evidence that this correct. Levels of DHEA normally decrease with age. The levels are quite variable. The use of this supplement is known to give people more energy and is common in Europe. We do not know what the long term consequences of this medicine are. I am sure that chronic illness and stress can require excess production of adrenal stress hormones. I do not know if adrenal fatigue is real or not. If it is, the best way to treat it might be to eliminate the underlying causes. If chronic infection with Lyme is the cause then perhaps effective treatment is to allow the adrenal function to improve naturally. Emotional stress should be minimized. Proper nutrition, rest and exercise should be encouraged. Patients who are profoundly fatigued may judiciously be given cortisol for short periods of time. But in general I am leery of this unproven approach.

Isn't mercury poisoning really the problem. Should I have my fillings removed?

I think this is a bad idea. May physicians who treat Lyme integrate alternative and complementary ideas and methodologies. Many believe that chronic heavy metal poisoning is a big part of the problem. There is no easy way to measure levels of mercury and other heavy metals. Blood and urine levels are not accurate since the metals are bound up in tissues. Some doctors give patients a chelating agent, which mobilizes the tissue bound metals and then collect a urine specimen. The released metals are excreted through the kidneys and can be measured in the urine specimen after a chelation challenge. We do know that heavy metals are toxic to the nervous system. We know that the developing nervous system of neonates and children is especially susceptible. All young children are routinely screened for lead poisoning since this is well know to cause significant cognitive problems in the developing brain. There is a controversy about a possible link of a mercury preservative in the MMR vaccine and childhood autism. There is however very little evidence to support the notion that heavy metals have a major impact on the mature brain and central nervous system unless the level of exposure is truly massive. Doctors who test by the described method find excessive levels of heavy metals in 95% of their patients. There is no evidence that Lyme patients have higher levels than the general population. Unfortunately, we all live in a toxic soup of poisons and chemicals. Our produce from South America is still laden with outlawed pesticides including DDT. Our farm raised fish is full of PCB, our wild fish is contaminated with mercury. Our water is full of toxic perchlorates and other chemicals too numerous to mention and many unknown. It sound bleak, but our bodies are amazingly tolerant and resilient to the affects of these toxins. The healthiest population in the world, with the highest percent achieving life spans that exceed 100 years live in Japan and the surrounding islands. The also consume huge amounts of mercury in their favorite food, tuna. The mercury in our amalgam dental fillings is sealed off. The process of removal creates a lot of mercury dust which is like to radically increase adsorption of this toxin, at least on a temporary basis. I think an approach to chronic Lyme which is too "holistic" is problematic. It is very costly. It takes physicians and patients down the wrong path and it tends to marginalize the relative importance of the chronic infection. It creates the false impression that all these other issues are making the patient ill, when there is no evidence to back up this theory. Most patients treated for chronic Lyme, if the diagnosis is correct get better when the focus is the chronic infection. I see many patients who have years seeing other doctors who have treated everything but Lyme. Sometimes patients are told that all these other things must be treated first. I have found that these patients are poorer, but not better. It is true that heavy metals are toxic. But I treat the obvious before chasing after red herrings which likely have little bearing on that which makes chronic Lyme patients ill.

What is a rife machine. Should I buy one?

This an interesting and controversial topic. I feel I know very little about this topic yet feel the need to mention it. This perhaps is one of the stranger treatments for chronic Lyme disease. The theory makes sense to me, patients tell me it helps. I don't think it cures anyone and it is expensive. The ideas behind this technology are really are very old. The great genius Tesla was said to have invented a machine that could bring down building by the uses of resonant sound waves. All materials have a vibrational frequency. If electrical or electromagnetic energy bombards the object with high levels of the proper frequency the object will eventually shatter. It is common knowledge that some opera singers have been able to hold notes which can shatter glass. In theory, it should be possible to determine the vibrational frequency of any object, including animate objects such as bacteria. It should then be possible to bombard the targeted organisms with high energy electromagnetic waves in the correct frequency which would cause the bacteria to explode. Ostensibly other tissues would not be harmed because they have other resonate vibratory frequencies. According to rife proponents the rife machines produce waves of electromagnetic energy which are sent through your body. The machines are tuned to the proper frequency to target specific microbes, such as Borrelia. They claim that Herx reactions occur with use of the machines and that this is proof of germicidal effects. The machines cost about $3,000.00 according to my patients who use them. They are not FDA approved. This is an example of a technology which makes sense to me based on the purported mechanism of action. Patients state that it helps them but does not cure them. Perhaps, and this is pure conjecture on my part, patients who truly cannot tolerate antibiotics, for example those who have had recurrent C. diff infections, may wish to do their own research and consider this exotic therapy. But remember, there is currently no scientific support for the use of this technology.

I am being treated for Lyme disease. Should I have my kids tested?

No. Not unless they show signs of the illness. Even if people have blood test which show exposure to Borrelia, it does not mean they have Lyme disease. Many patients are exposed but never show signs or symptoms of the disease. Patients who are not symptomatic should not be treated. Therefore, they should never be tested. This only generates information which is confusing, anxiety provoking and potentially harmful. Why consider exposing your child to the risk of antibiotic therapy when they are not ill? Since the child does not have acute symptoms we can never know when the exposure occurred. Since the endpoint of treatment is resolution of symptoms, even if we were to treatment we wouldn't have anything to shoot for. We do not know what percent of exposed individuals will ever develop the disease in their life times. And we don't have a magic formula for a number of days with a particular drug which will guarantee that Lyme will never develop. Clearly there are many patients who experience a full relapse of Lyme symptoms after long periods of antibiotic therapy. No one who is not ill should be tested based on the current state of the art.

What is the role of yeast infections?

Antibiotics displace normal flora, this gives yeast an opening. Yeasts are generally considered opportunistic organisms, they don't become active unless given the proper invitation. Natural systems have evolved over millions of years. There is a normal balance of microorganisms which reside in the tissues of our body. In ecological terms they live in a niche. Colonies of normal colon or vaginal flora create a barrier against expanding populations of yeast,usually Candida species. The Candida are chronically present in small numbers, but unable to flourish due to other microbes which protect their territory as well as host immunological barriers. People who have suppressed immune systems are susceptible as are patients on long term antibiotics. Yeast infections can be problematic in the pharynx, esophagus, colon and vagina. Many doctors recommend low sugar, low carbohydrate diets which deprive yeast of their favorite foods. There is convincing evidence that this strategy work. Although, I recommend low sugar diets to all my patients for other health benefits. Probiotics is the best stategy here as well. Patients may need anti-yeast medications. Since the antibiotics are long term, these drugs may also need to be taken long term. The most often used medicine is Diflucan, which can be given in various doses, usually 100mg or 200mg per day. There have been concerns about the long term safety of this drug and its potential for liver damage. I have found it safe for the vast majority of patients. Liver tests should be monitored. There are reports on the Internet that this drug has anti-Lyme effects itself. This does not make sense to me and to date there is no evidence supporting this theory.

Clostridia difficile and antibiotics

A major concern with long term antibiotics is diarrhea. In its most extreme form it is called pseudomembranous colitis. Patients with this disorder can be very ill. Its hallmark is severe diarrhea which can turn bloody with mucous production. It has a characteristic foul odor. It is related to a displacement of normal flora of the gut with the proliferation of a bacteria called Clostridia difficile. This is an anerobic bacteria, one which does not require oxygen and is in the same family as the germ with causes botulism, related to toxin production. C. diff, as it is called releases toxins, A and B which cause severe inflammation in the colon. Patients may have a high fever and a very high white blood cell count. Patients can have severe abdominal cramps, anemia at times, dehydration and require hospitalization. Although it sounds scary, none of my patients has died from and none have required prolonged hospitalization. If a patient has diarrhea the physician should be notified. The best prevention is taking large doses of probiotics and perhaps eating yogurts with live cultures. Most patients with mild disease improve when the responsible antibiotic(s) are stopped. Many require antibiotics. The most used drug is Flagy. This is also used as a Lyme drug for killing cyst. It is interesting to conjecture that the routine use of this drug along with other Lyme antibiotics might prove effective in the prevention of C. diff colitis. But to my knowledge there are studies to substantiate this theory. Rare cases do not respond to Flagy and require the expensive Vancomycin. The Flagy works by either the intravenous or oral routes. The Vancomycin is only effective when given orally. For Lyme doctors the biggest problem is what to do when the patient recovers from their C. diff. Can antibiotics be restarted? This is a difficult question and each patient is different. It must be decided based on a careful assessment of risks and benefits for each patient. I can report that many C. diff patients have been successfully been restarted on other antibiotics without recurrence when great care is excercised. Patients may need a break from antibotics. This is a time when dabbling with alternative, non-antibiotic therapy options might be considered as the best alternative.

Lyme and Lupus

Lupus and Lyme are two entirely different diseases, aren't they? Lupus, or Systemic Lupus Erythematosis is an autoimmune disease. It is known to be associated with various genetic variations. It is more common with certain HLA types. Multiple susceptibility genes have been identified. It is more common in the female gender. Contemporary texts state that it the interaction of environmental factors with genetic predisposition that leads to disease expression. Epstein Barr virus antibodies are more prevalent in idividuals with Lupus. The hallmark of Lupus is that it is a progressive multi system autoimmune disorder that affects a variety of organ symptoms over time. It is associated with autoimmune antibodies. Many of the symptoms of Lupus also occur in patients who test positive for Lyme disease. Many Lyme patients may also have some positive Lupus antibodies, including the ANA, antinuclear antibody. There can be a great deal of similarities in the two diseases. Many Lyme patients have the same arthritis and muscle pains as Lupus patients. The characteristic rashes, when present are quite different. Both have changes in blood counts with a low white blood cell level frequently seen. Both have a similar neurological picture. The both can have cognitive dysfunction, headache, meningitis and myelopathy (a disorder of spinal nerves). They can have similar heart and lung issues with fluid around the heart and lungs. They can both have eye involvement. The kidney disease of Lupus is not seen in Lyme. It is interesting that Plaquenil is a medication which has been found to be useful in both disorders. Lupus is a distinct inherited autoimmune disease. It is possible that Lyme disease can be a major environmental factor which triggers the disorder in susceptible individuals. At any rate, the two diseases can look very similar and most be sorted out in the process of differential diagnosis.

What does the Montgomery County Health Department say about Lyme disease?

I saw a patient today that had two deer tick bites. She went to the emergency room to have one tick removed. She had a rash at the site of the bite and then developed a red 8cm bulls eye type rash in an adjacent area. When she was treated at the emergency room she was given a single dose of Doxycyline for 200mgs. She developed a host of symptoms. She had fatigue, fever, chills, muscle and joint aches. She had painful swollen glands.She had a severe headache and stiff neck. She went to her primary physician. He didn't know what was wrong with her. He ordered a test for Lyme disease which was negative (after three weeks of persistent symptoms) and told her she did not have Lyme disease.

Doctors are programmed that Lyme is not real by IDSA propaganda topical New England Journal editorials. This has caused an unfortunate backlash.

The following information does not come from ILADS. It comes from the County Health Department. Most Lyme infections are caused by nymph forms of the tick, the size of a pin head. Early symptoms include skin rash which may be multiple. Fatigue. Chills and fever. Headache. Muscle and Joint pain. Swollen lymph nodes. The County website/bulletin goes on to say that some people never develop a skin rash and that the symptoms vary. It also states: "Some signs ans symptoms of Lyme disease may not appear until weeks or years after a tick bite. It list symptoms in late Lyme as including numbness, arthritis, memory problems, fatigue which persist after treatment. It states that: "If Lyme is detected and treated early, symptoms are usually mild and easily treated." It skirts around the issue of chronic or Post-Lyme symptoms, but does not take a stance on the issue (chronic Lyme vs Post-Lyme).

This patient had classic sign and symptom of acute Lyme disease, but it was missed. Perhaps headlines in the Washington Post which state that chronic Lyme doesn't exist per the New England Journal get truncated to, "Lyme disease doesn't exist" in the minds of clinicians.

The CDC has made it clear that Lyme is not to be diagnosed based on their laboratory test which was set up for surveillance purposes only. And even the IDSA admits that the antibody tests for Lyme will not turn positive for 4 to 6 weeks after infection. In this patient the negative blood test was completely meaningless.

Forget about the Lyme controversies. Physicians should be adequately informed so that acute Lyme can be diagnosed and treated properly. Early treatment will prevent most patients from subsequently developing chronic Lyme disease.

New Book

I just got it today. BEATING LYME by Constance Bean looks like a great resource. She covers the history of the illness, her personal experiences as a patient with Lyme as well as the controversies. She covers the major players, the politics and much more. It is a good resource and I highly recommend it.

My knee hurts and is swollen, I did nothing to injure it. Is it Lyme?

Lyme disease frequently presents itself with a single painful joint. It is nice when it is large joint, such as the knee and an effusion (water on the knee) is present. The fluid can be withdrawn by a needle and tested. A positive test for Lyme will only be obtained if the doctors knows what test to order. The test that is accurate is not FDA approved and the standard tests are virtually worthless. The fluid must be sent for Lyme Western Blot antibodies and or a C6 peptide ELISA test for Lyme antibody. The Lyme germ will not be in the fluid, unless the doctor is very lucky. The Lyme bacteria lives in the cartilage and synovial lining of the joint. A culture will be negative. A PCR test for Lyme DNA will be negative. This is a great test but it only works if the specimen contains the actual bacteria. This is a test that most doctors order because they think it is reliable. The bacteria are not in the fluid so it will consistently be negative. The fluid shows an acute inflammatory response. Tests for the usual rheumatological causes of this sort of arthritis will be negative. The doctor will scratch his head. A wrong diagnosis will be made. . This sort of inflammatory arthritis of a single joint could be: gout, rheumatoid arthritis, another bacterial infection, Reiter's syndrome, reactive arthritis of various sorts, psoriatric arthritis and others. A blood test for Lyme may be ordered. But the usual ELISA/Western Blot two step will be negative in the vast majority of cases. These patients frequently do not have a lot of other Lyme symptoms and are in a fairly early stage which is easy to cure. It is unfortunate that most patients will be diagnosed and treated based on algorithms which don't work. These patients can be easy or vary hard, depending on the treating doctor's understanding of the issues outlined here. Test books need to be updated so that physicians will get this one right. When the disease is missed at this stage there may be hell to pay down the road.

Neuroborreliosis is driving me crazy!

Another patient today. This is the bane of my existence. These patients are coming out of the woodwork. This pleasant young man is 41 years old and he can't remember anything (slight exaggeration). He still works. But his loss of short term memory and bouts of confusion are driving everyone in his life crazy. He went to pick up his daughter, but went to the wrong school. He gets lost and confused. All of his critical cognitive processing has slowed down to a snail's pace. He looks like an early Alzheimer's patient. He is 41 years old! He had Lyme disease 11 years ago. His doctors prescribed 3 weeks of Doxycycline and told him he would DEFINITELY be cured. It could of been me. It wasn't. I saw him a year ago for typical chronic Lyme. I treated his with oral antibiotics. His aches and pains went away. His fatigue and other subjective symptoms all cleared up. After seeing me he sought the advice of a practitioner of alternative and complementary medicine. He was chelated for high mercury levels. He brain has gotten progressively worse. Today I sent him for blood studies. I ordered a Brain MRI with contrast and a nuclear medicine SPECT scan. He is going to need IV Rocephin and his insurance company will refuse to cover it for very long. Like similar patients, his MRI will show various degrees of white matter changes in the deep part of the brain. If the radiologist is given a history of Lyme infection, he will report that these changes are compatible with Lyme disease. Otherwise the report will suggests such things as a demylinating process, IE MS, vascular disease of small blood vessels or changes related to migraine disorder. The SPECT scan will show non-specific changes in blood flow to the brain which are compatible with Brain Lyme, but not specific. His laboratory test will show various abnormalities. The ELISA test for Lyme will be negative. The 10 band Western Blot test will probably be negative, but show one or two reactive bands. The 28 band Western Blot from IgeneX will likely be positive, but may only show indeterminate bands at the critical locations. The CD57 count will likely be low. C4a and C3a comlement levels will likely be elevated, but this is not guaranteed. The C-reactive protein level may be high. The vitamin D ratio will likely be abnormal. Vitamin D OH 25 will be low and Vitamin D 1,25 will be high, perhaps in the toxic range. This is the most reliably abnormal laboratory marker of the illness, yet there are no published studies which support this. Co-infection antibodies may be present, or not. High antibodies against Chlamydia pneumonia are very common. If the patient is sent for psychological testing it will show a variety of abnormalities. These tests are expensive, time consuming and generally not covered by insurance. As a practical matter they are generally not done. A simple mental status exam performed by the physician will show abnormalities if the disease is severe, as in the case described above.

Published data from Dr. Fallon and Columbia University from October 2007, show in a placebo controlled trial that long term IV Rocephin makes a difference. Patients were considerably better after 12 weeks. However, all the improvement disappeared in 3 months when antibiotics were discontinued. A repeat course of IV Rocephin was associated with a return of the gains. The suggestion from this study is that very long term IV antibiotics may be the best option for patients with Lyme encephalopathy also called neuroborreliosis or simply Lyme disease affecting the brain.

My patients go the hospital to have a PIC line (percutaneous indwelling catheter) placed into a large vein called the vena cava. A home nursing agency arranges for medicines to be delivered to their homes. The medicine is dripped into the vein from a bag daily. The dose of Rocephin is usually 2grams daily, a substantial dose. Herx reactions can be severe. I like to continue the treatment until the patient improves. The insurance company my have other ideas. 12 weeks is certainly better than 4 weeks which not be at all helpful. Rocephin is great because it crosses the blood brain barrier and needs to be given only once daily. The main side effect is sludging in the gallbladder with occasional cholecystitis (gallbladder disease). A medicine called Actigal can be given to reduce this effect. I have not found this necessary but might use it in a patient with known gallbladder disease. Rocephin inhibits cell wall synthesis. That means it only kills spirochetes. In severe cases I add Zithromax and Flagyl. Both can be given orally or by IV. Typically I add Zithromax 500mg IV daily and Flagyl 500mg daily. There is no literature to support this IV cocktail but it makes good sense and patients seem to benefit. Of course I realize that my anecdotal reports are not a substitute for sound science. One must realize that many studies in medicine will never be done. This is why medicine is an art as well as a science. The Zithromax works by an intracellular mechanism and is able to kill L-forms of Borrelia. The Flagyl targets the cyst forms of Borrelia. It has also been shown that such a cocktail is necessary to treat Chalmydia pneumonia if this is also present. Many patients have incredible responses. But I am unable to predict how an individual patient will respond. Follow up SPECT scans can show improvement in cerebral dysfunction. A prolonged course of oral antibiotics must follow the IV treatment in order to avoid any back pedalling from the gains that have been secured. The total duration of oral therapy is also hard to predict, but is likely to be many months to years.

While all these patients suffer with Lyme dementia doctors are busy fighting about whether or not chronic Lyme exists. Doctors who treat these patients are still targeted for State Medical Board investigations. Most patients generally are never diagnosed and I am afraid the repercussions are horrible for so many that could be helped. I hope to raise awareness so that many of these unfortunate souls can have access to treatments that can be extremely beneficial.

What is P:ost-Lyme syndrome and how is it different from chronic Lyme disease?

This question describes a critical piece of the paradigm war between the IDSA and ILADS. According to the IDSA model, persistent symptoms, such as joint pain or brain fog which persist after standard antibiotic therapy are not related to ongoing infection. They are instead the result of an autoimmune process which was triggered by the infection and which persists after the organisms are cleared from the host. There is precedent for this sort of thinking. Rheumatologists have been proponents of this type of thinking for decades. A common cause of inflammatory arthritis is Reiter's syndrome. This is classically a triad of eye symptoms (uveitis or conjuctivitis) with urethritis (urinary tract disease) and arthritisl. It occurs after infection with Chlamydia( yes, the kind that causes an STD), Mycoplasma, or Ureaplasma. It is interesting that these bacteria are intracellular L-forms which according to chronic Lyme paradigms may be hard to treat. Rheumatologists believe that these infections induce an autoimmune process and that the organisms are no longer present in the patients. Another designation for inflammatory arthritis is called reactive arthritis. It is designated ReA. This is usually associated with infections of the gastrointestinal tract, including, Shigella, Salmonella, Yersinia and Campylobacter. There are all bacteria which cause infections associated with diarrhea. It can also be caused by Chlamydia and similar bacteria. It tends to be associated with certain HLA genetic types, including HLA B27. These organisms also have the ability to exist intracellularly. Antigens, meaning pieces of the germs, as well as DNA and RNA of these organisms has been shown to be present in tissues which line the joints (synovium) and joint fluid (synovial fluid) for years after the initial infection. This "controversial" data comes from Harrison's Textbook of Medicine, the most respected source of information for mainstream doctors throughout the world. Harrison's claims that studies have shown that antibiotics have not shown to be effective and that patients should be treated with anti-inflammatory medicati0ns, like Motrin. The essence of the theory is that the persistent arthritis in these patients is a post-infection autoimmune process. The science demonstrates that viable organisms persist in these patients. In the example of Chlamydia, newer information as developed by Stratton demonstrates that these organisms are very difficult to eradicate and that a specific multi-drug regimen, over a long period of time is necessary. I have found that antibodies directed against Salmonella bacteria can be found in the majority of my patients. This is a hardy organism which is difficult to eradicate and has many tricks to evade the immune system. It can lodge in the gallbladder where it causes chronic inflammation. (There are numerous strains of Salmonella, I am not speaking of the strain which causes Typhoid fever and is rare in the U.S.). The Post-lyme syndrome suggests that the persistent symptoms are not causally related to persistent infection. There is a great deal of medical research and literature which supports the contention that the organism persists despite antibiotic therapy. The argument of ILADS proponents would be that there really is no post-Lyme syndrome. Persistent symptoms equate with persistent infection. Long term antibiotics are required. And patients feel better on antibiotics and relapse when they are discontinued. IDSA proponents argue back that this benefit is derived from anti-inflammatory properties of antibiotics, unrelated to their germ killing affects. ILADS doctors ask why only antibiotics work, which have weak anti-inflammatory properties at best, while potent anti-inflammatory drugs provide no benefit for the patients. Beyond reactive arthritis, symptoms related to dysfunction of nerves, muscles, tendons, ligaments, peripheral nerves, cranial nerves and the central nervous system, all frequently improve dramatically with antibiotic therapy. There is no such thing as post-Lyme syndrome. Patients are suffering with chronic Lyme disease. ILADS doctors can point to laboratory markers of infection and inflammation which improve with antibiotic therapy as well. IDSA doctors are mute on this point.