Dr. Lesley Fein Calls for an End to the Ignorance & Arrogance Surrounding Research & Treatment of Tick-Borne Illnesses
by Dr. Lesley Fein, MD., MPH
Tick borne infections are now much more complicated than just exposing hosts to the risk of Lyme disease. Eva Sapi has studied 1,000 ticks and the current number of potential infections is 12 or more, including organisms for which testing is currently not even available.
In addition, the lonestar tick has made it's way to the Northeast. This needs to be addressed since it carries Rocky Mountain Spotted fever (RMSF). On review of ticks sent out for testing from my office in 2009, 50% carried RMSF, a number higher than any other infection.
Guidelines For Treatment of Early Infection
Despite these data, Health Departments follow the "CDC guidelines" when advising their citizens. What are these guidelines? Do NOT test the tick (throw it away) and take ONE DOSE of Doxycycline! Of course, the Health Departments are eager to tell you to "follow up with your doctor", but if they are proposing "guidelines" why should citizens not believe them?
After studying tick borne infections, I would like to offer alternative suggestions:
1. Always test ticks which have been identified as engorged deer ticks or lonestar ticks. Test for all strains of Borrelia, Bartonella, Babesia, Anaplasma, Ehrlichia, Mycoplasma species and
RMSF.
2. Learn how to identify ticks. there are pictures on line, but to see a nymph I use an Ophthalmoscope which provides outstanding magnification. Look carefully at the shape of the lonestar because the male does not have the classic white dot.
3. If the tick is engorged, take at least 3 weeks of Doxycycline 100-150mg twice a day depending upon your size. Children who do not have all of their adult teeth may not get this drug.
4. If you develop symptoms suggestive of Lyme or the other tick borne nfections, play it safe and continue for a full 6 weeks.
5. Perform serological testing after one month but, do NOT be reassured by negative testing when it comes to Borrelia. Also never do ONLY the ELISA. Always include a Western Blot because frequently the very first antibody is the 23 on IgM Western Blot.
Why Is it Important to Treat Early?
Why is it important to eradicate Borrelia early on in the infection?
1. Data from Sweden and the U.S. have shown that the motile form of Borrelia "morphs" into "round bodies" which are intracellular and do not respond to most of the antibiotics currently prescribed. They have the ability to "morph" back into the motile form. Inadequate treatment early on can result in the formation of the resistant forms resulting in chronic infection, including infection with forms resistant to most antibiotics currently prescribed.
2. Data from Dr. Trevor Marshall have shown that of all bacterial species, Borrelia has the highest affinity for the VDR receptor. This receptor is responsible for immune function. In other words, Borrelia severely inhibits immune function. Dr. Miklossy has shown similar immune blockade in the brain.
3. By treating early, you can prevent Borrelia from "tricking" the immune system and inducing auto-immune diseases.
4. Data presented in New Haven have illustrated that the motile forms from colonies which then secrete biofilms which completely protect them from immune detection.
5. Data from Dr. Judith Miklossy have shown that not only are spirochetes isolated from the brains of patients with Alzheimer's disease (AD), but has also directly proven that infection in animals results in the production of the identical proteins by brain cells which are found in AD brains.
6. Borrelia is associated with Multiple Sclerosis.
7. Borrelia is associated with vasculitis.
8. Borrelia is associated with auto-immune diseases such as Rheumatoid Arthritis, Lupus, Polymyalgia Rheumatica, Bechets disease and others.
In my practice I have seen infection with Borrelia result is very quick and dramatic induction of auto-immune diseases. In one case this past month, I saw a patient who went from a normal sedimentation rate in early April to a sedimentation rate of 97 by the end of April after a tick bite, and had symptoms identical with Polymylagia Rheumatica. She was diagnosed with this disease and treated with steroids. She did have early bands on a Western Blot from April. She was seen this week. Her steroids are being tapered significantly and her sedimentation rate is less than 10. She has no symptoms but fatigue. Of course, I put her on antibiotics when she was first seen at my office one month ago.
9. Borrelia has been known to precede the development of both ALS and Parkinson's disease. Once initiated, I have found these difficult to reverse and patients often end up with permanent neurologocal damage.
10. Borrelia is associated with deafness, loss of vision and total disability. It is estimated that 25% of cases of chronic fatigue syndrome are initiated by Lyme disease. There are 1 million cases of reported CFS in the US and 2 million in Europe.
Other Tick-Borne Infections
What about other tick borne infections?
1. Bartonella is not detected in 50% of cases even by CDC estimates. It causes hemolytic anemia, vasculitis, brain and spinal cord lesions. In a New Jersey tick study in 2001, this was present in more ticks than was Borrelia. There are laboratories attempting to improve the diagnostic accuracy.
2. There are protozoan infections other than babesia which are not currently being tested for routinely. Even babesia is difficult to diagnose with testing. This infection can cause cerebral vasculitis as well as hemolytic anemia.
3. Ehrlichia/Anaplasma/ RMSF can cause severe acute illnesses and even death, but there is no current evidence that they become chronic. A member of my family presented to an emergency room with high fevers, chills, a seriously low white cell count, low platelet count, extremely elevated liver enzymes and severe pain in the splenic area. She looked like she was going into shock. She was treated for "sepsis" but an infectious disease physician in New Jersey diagnosed acute Ehrlichiosis with the highest titers I have ever seen in my years of practice. She subsequently had high testing for Lyme on both ELISA and Western Blot and became bedridden for close to a year. This diagnosis would have otherwise been missed. We were lucky to receive the correct diagnosis and treatment, and I am happy to say she is healthy and without symptoms 18 months after treatment ended.
Why Are These Diseases Being Ignored?
Why are these diseases still minimized and ignored by the majority of Infectious Disease physicians, Neurologists and Health Departments, as well as the
CDC?
The financial aspects including relationships between "experts" and insurance and pharmaceutical companies, receiving huge research grants while writing insurance criteria excluding the diagnosis in most cases, seems to me as a lay person, to be an obvious conflict of interest. Of course a person of no conscience will say whatever is required to an insurance company for ample reimbursement. The same person will also embellish their resume and be granted enormous amounts of research dollars for work which has essentially done nothing to further our understanding of the complexity of these diseases. Yet the same person will also be an "advisor" to the CDC creating criteria which are rigid, and have been found in vast amounts of world wide literature to be completely un-validated. The U.S. is way behind in this area of research as a result.
I do not blame the practicing physicians for following guidelines which are issued by "experts". How should they be expected to know differently?
I blame the "experts" for perpetuating the myth that tick-borne infections are trivial and easy to treat. I blame the leaders in the neurology field for not even knowing that there are "cystic" or "round body"
forms of Borrelia, because they do not attend the conferences where this is discussed. I blame them for not reading the brilliant research presented by Dr. Miklossy, Dr. Sapi, doctors at Hadassah who published vasculitis articles, and I blame them for their arrogance in insisting that it has not yet been "proven" that chronic Lyme exists. The persistence of this organism has been exquisitely "proven". I blame them for insisting that there is no "proof" that treatment with antibiotics "cures" these chronic neurological diseases. This may be true, but the fact that Dr. Fallon has demonstrated statistically significant improvement after IV Rocephin in all groups suggests that there is, indeed, a response, but that patients relapse! This is not the same as showing no response at all. Now that we know about the "round bodies", it makes perfect sense that people relapse after only Rocephin! Not only does Rocephin induce the round bodies, but it has no ability to kill them. They lack a cell
wall.
It is time for this community to unite. It is time to stop a potentially curable disease from becoming a disabling one because of ignorance and arrogance. It is time for patient groups, physicians with knowledge of these diseases, and those with biased views and the CDC to collectively work together to prevent, detect and eradicate what is now an epidemic. There is no place for arrogance and bickering. People are suffering, becoming disabled and getting horrible neurological diseases like Alzheimer's disease! Enough is enough!
About Dr. Fein:
Lesley Fein grew up in South Africa where she obtained her Bachelor of Science with Honors degree. She was one of 5 founders of a clinic for indigent farm laborers and is proud that this center has now been integrated into the medical school curriculum in Johannesburg. Dr. Fein holds both an MD (George Washington University Medical School) and an MPH (Columbia University, NY). She is Board Certified in Internal Medicine, following a three-year residency program at Mt. Sinai Hospital in NYC, and she completed her Fellowship in Rheumatology at New York University. She has been in practice since 1988 and has taught Epidemiology to medical and public health students at Columbia University and Mt. Sinai Hospital, NY. She has also taught General Medicine at Mt. Sinai and NYU.
Dr. Fein has served on several committees, inclusive of S296 under Senator Bennet (Majority Leader of NJ Senate) regarding Lyme disease, the National Health Legislation Task Force, and is Vice President of the Neuroendocrine Center recently voted through both the NJ Assembly and Senate with 100% positive votes.This center will be studying all of the causes of myeloencephalopathy and neuroendocrine dysfunction. She is both an experienced researcher and a seasoned public speaker and has published articles, co-authored a book, written a forward to a book, and has been integral in wording government legislation on Lyme disease and other tick borne illnesses.
