More than 250 people from all over the United States and Canada gathered together in Farmington Connecticut on May 7, 2005, to learn about Lyme Disease and its co-infections. Sponsored by The Greater Hartford Lyme Disease Support and Action Group, the main theme was misdiagnosis and the interconnectedness of our many chronic autoimmune illnesses.
The key organizers of this special event, Randy and Laura Sykes and Chris Montes, worked together with other members of the group to bring together a wonderful collection of the most respected doctors and researchers, specializing in the diagnosis and treatment of Lyme Disease, mycoplasma and other co-infections. The overall atmosphere of this meeting was electrifying. There was such a sense of unity and purpose .The first speaker, Dr. Whitaker, specifically mentioned the special collective aura which exuded from those in attendance.
Dr. JoAnne Whitaker, the President and Director of Research of the Bowen Research and Training Institute, opened the meeting with her presentation focusing on ALS and it's possible connection to Lyme Disease. Dr. Whitaker has developed a critically important test for Lyme Disease called the Bowen QRIBb Test . It uses the fluorescent staining technique to identify the actual L or cyst form of the Lyme disease microbe....Borrelia burgdorferi (Bb). This patented test identifies the antigen of the bacteria and not the body's antibodies. One receives a microphotograph of the actual microbe identified in their body.
Dr. Whitaker stated that they rarely find Bb in the blood in the spiral corkscrew form but almost always it is in its L form. Because this microbe can change it's form or shape, it is very adept at avoiding detection by the body's immune system and antibody testing. This could be one of the reasons why the diagnosing and treatment of Lyme Disease is so controversial.
Dr. Whitaker postulates that ALS could be the end stage of Lyme disease. She talked about the many ALS signs and symptoms which exactly mirror the symptoms of Lyme Disease....and of course the most important fact is that her test has found that most if not all ALS patient bloods which were sent to her were positive for Lyme.
The Bowen Lab receives blood samples from all over the world. The patients who send their blood to Bowen have previously been diagnosed with conditions such as ALS, Alzheimer's, Lupus, Chronic Fatigue Syndrome, Fibromyalgia, Bell’s Palsy and more. Almost all of these patients test positive for Lyme using the Bowen Test. Some doctors and researchers feel that this means the test is inaccurate....too many positives. But others are beginning to realize that these findings are most likely representing the true proportions of this epidemic we are faced with. That it is not SARS, West Nile Virus and Anthrax we need to be worrying about, but rather the microbes such as mycoplasma, bartonella, babesia and borrelia burgdorferi that are already in our midst, spreading slowly but steadily throughout the population and causing untold suffering, disability and death.
Our next illustrious speaker was Dr. Lida Mattman. She graduated from Yale, with distinction, receiving a PHD in immunology. She has published 75 journal articles and a book entitled "Cell Wall Deficient Forms - Stealth Pathogens". She was also nominated for the Nobel Prize in medicine.
One of the most important points she presented was the fact that spirochetes are among the best at disguising themselves. In order to reliably detect the presence of this organism, one must look for the pleomorphic forms and not the classic form. This is also true for other types of bacteria. Spirochetal diseases, in general, tend to become very widespread and then endemic, which she believes has happened with Lyme Disease.
Dr. Mattman also showed evidence that spirochetes of several different types, including the Bb strain, are involved in Multiple Sclerosis. Spirochetes, which were found in autopsied brains of M.S. patients looked more like borrelia in morphology. Spirochetes were also found in the spinal fluid of M.S. patients. Dr. Mattman also mentioned a relationship between Lyme, ALS and Parkinson's. Those Parkinson's patients who were treated for Lyme all improved.
(Writer’s Note: After listening to Dr. Mattman's presentation, I concluded that we need to look for the L or cyst form of these microbes when testing those with chronic illness. In order to do this, direct detection methods must be used.)
Dr. Bernard Raxlen, a neuropsychiatrist, spoke about the many patients who are being misdiagnosed with somatiform conditions (all in the head), who, when tested for Lyme Disease, all tested positive. Doctors are being presented with many medically unexplained symptoms and when they find no organic causes, they label the patient's problem as psychosomatic. To borrow a quote from the conference program, "Dr. Raxlen is the only psychiatrist in the tri-state area (N.Y., N.J, CT) to initiate a total comprehensive treatment program utilizing both oral and IV antibiotic treatment intervention in conjunction with neuropharmacology and stress management for depression, panic disorder, bipolar mood disorder and prefrontal lobe deficit syndrome. He has uniquely integrated these treatments with supportive modalities from his work in psychoneuroimmunology and nutritional medicine."
Connecticut State Attorney General Blumenthal gave a short speech commending the activists in the Lyme community for working so hard to get the information about Lyme Disease to the public. He also gave an award to Polly Murray for being the pioneer of Lyme Disease. She was a housewife and mother who, along with her children and neighbors, experienced the devastation of Lyme Disease before anyone knew what it was. She wrote the book, "The Widening Circle", which told of her struggle.
A second award went to Dr. Jones, one of the only pediatricians in the state of Connecticut who openly treats chronic active Lyme Disease in children. (Dr. Jones could not be there in person to accept his award because, though it was Saturday, he still had children to treat.)
Our next speaker was Dr. Richard Horowitz, a physician with twenty years of experience in treating complicated cases of Lyme Disease. He practices in Hyde Park, N.Y and has treated over 8,000 cases of chronic tertiary stage Lyme disease.
He spoke about the many factors which contribute to the whole chronic Lyme Disease scenario: environmental toxins, neurotoxins, poor diet and co-infections which all pile on top of each other to form the total chronic Lyme picture. He told us of the over 100 strains of Bb in the United States and the over 300 strains worldwide. Only several of these strains are currently being tested for, and this is one of the obvious explanations for the lack of proper treatment, or any treatment at all. It is becoming more and more apparent that many of these chronic or so called autoimmune diseases do have an infectious cause ...or several infectious causes.
Disseminated Lyme Disease can affect all of the following systems in the body: the dermatologic, neurologic, cardiovascular, opthalmologic and musculoskeletal systems. Dr. Horowitz spoke extensively about co-infections and how they play a major role in the patient's lack of ability to get well. It was mentioned that the Lyme/Babesia combination was the most serious and difficult to eradicate. As with borrelia, there are also many different strains of Babesia not currently being tested for. Dr. Horowitz said that although everyone is different, it usually takes at least a year of treatment or more in typical cases of chronic Lyme. The general rule of thumb is to treat the patient for two additional months after all symptoms have resolved. The reason given for extended treatment is that Bb is a very slow replicator and can hide out intra-cellularly. The Bb organism can only be killed when replicating. It was also brought up that different strains require different types of antibiotics. Thus, in many cases treatment consists of experimenting, and trial and error. Spinal taps are often negative for Lyme disease because of circulating immune complexes in the spinal fluid, which means that a negative test on spinal fluid cannot rule out Lyme disease as the patient's problem.
The Lyme microbe can change its structure and can also cloak itself to hide from the immune system. Dr. Horowitz made it clear that very few "chronic" Lyme patients test positive on the Western Blot and in fact the actual percentage who test positive may only be 1%.
(Writer’s Note: I have heard from certain researchers that most of those with chronic Lyme do not produce antibodies to the germ. In other words, those who are the sickest with Lyme disease do not test positive and therefore do not get treatment. This makes such a definite statement that diagnosis needs to be clinical, based on symptoms, patient’s history, and the doctor's ability to discern the general symptom complex. The only way a doctor can acquire this discernment is through experience. This is why the world of science should be learning from our Lyme-literate doctors, and not attacking them.)
Professor Garth Nicolson is President and Chief Scientific Officer for the Institute of Molecular Medicine (http://www.immed.org). A main interest of his is researching the role of chronic infections in many different chronic diseases such as Chronic Fatigue Syndrome, Gulf War Illness, Fibromyalgia, Rheumatoid Arthritis and autoimmune diseases.
One of the first things that Prof. Nicolson mentioned was that a large subset of Chronic fatigue patients actually have Lyme Disease. Nicolson feels that Chronic Lyme involves viruses, bacteria and fungus. He says that this chronic state evolves over time. The Lyme infection can weaken the system and allow for these additional microbes to accumulate. It is also possible that it could work the other way around. A collection of other microbes, besides Lyme, could weaken the immune system, which could then allow Lyme to become chronic.
Nicolson discussed co-morbid states, explaining that most patients with chronic illness are infected with more than one pathogen. Each disease causes its own problems and this could be the reason why so many signs and symptoms keep shifting. Some of the culprits he mentioned are: mycoplasma, chlamydia, rickettsia, brucella, borrelia, coxiela, EBV, HHV6, CMV, enterovirus, Hepatitis C and fungus.
Each patient has their own unique overlap of symptoms. Because of this they end up going to different specialists who hand them a specific disease label to match their set of symptoms. There are usually no definite tests, causes or cures for all the subsets; only symptomatic treatments are offered. In the meantime, these infections continue to weaken the body.
Fatigue is the most common symptom of all those diseases because the pathogenic intracellular bacteria attack the mitochondria or battery of the cell. Lipids are the insulation for these mitochondria, and when the lipid membranes are stripped off, this depletes the energy and this is why fatigue is the most common complaint. One of the keys to improvement then would be to somehow restore the mitochondria of the cell in order to restore energy. Some nutritional supplements can restore mitochondrial function and therefore improve energy.
Nicolson also advised checking for dental infections in chronic illness, as this is a very efficient means of transporting germs into the body. And he noted that being bitten by a tick is not the only way to acquire these infections. Some are sexually transmitted, and some can be passed through the placenta, breast milk, tears and other bodily fluids.
One of the most important bits of advice he shared with us was to keep your immune system in tip top shape. He suggested reducing alcohol, caffeine, sugar and fats. Some of the immune enhancements he spoke of were: natural antimicrobial products, hyperbaric oxygen treatment, hydrogen peroxide baths, ozone therapy, Infrared saunas and sublingual B vitamins. Vitamins C, E and CoQ10 were also thought to be needed. Helpful minerals mentioned were zinc, chromium, magnesium and selenium. He stressed the fact that antibiotics by themselves will not cure you. It is up to the patient to follow appropriate healthful suggestions.
Professor Nicolson also spoke about Gulf War Illness and how it's symptoms mirror Chronic Fatigue Syndrome, Lyme, Fibromyalgia and certain other diseases. For more detailed information, read the abstract of the following study: “Mycoplasmal Infections in Chronic Illnesses: Fibromyalgia and Chronic Fatigue Syndromes, Gulf War Illness, HIV-AIDS and Rheumatoid Arthritis”.
Trevor Marshall, PhD, is the chairman of the Autoimmunity Research Foundation. He has developed The Marshall Protocol for the treatment of Th1 diseases, including Borrelia. Trevor Marshall was originally working with Sarcoidosis and eventually discovered that the solution for Sarcoidosis was also the solution for Lyme disease and other chronic infections.
The Marshall Protocol focuses on curing the disease itself. He uses a drug named Benicar in his protocol and avoidance of sunlight. For a deeper discussion and explanation of this treatment please visit his site.
Dr. Lesley Ann Fein was the Master of Ceremonies at the conference. She holds both an MD and an MPH, and completed her Fellowship in Rheumatology at New York University. She is an experienced researcher and a seasoned public speaker.
She spoke mostly about Bartonella, or Cat Scratch Disease. But first she raised the question, " Why do doctors get into trouble for treating Lyme disease?" She listed insurance statistics which pointed to why the insurance companies are playing a major role in the persecution of doctors who treat Chronic Lyme and as to why patients are not receiving treatment..
Regarding Cat Scratch Disease or Bartonella, Dr. Fein told us that the disease has been recognized since 1950. Most of us think of it as being transmitted solely by the scratch of a cat. However, it has been postulated that it can also be transmitted by a tick. According to a recent article published by Drs. Eskow and Mordecai, there have been several identified cases where Lyme Disease and Bartonella co-exist in the same patient, which raises the question: “Can Bartonella be another infection transmitted by ticks?”
We were told that 70% of the ticks in the Netherlands were positive for Bartonella and that in New Jersey more ticks tested positive for Bartonella than Lyme. Bartonella cases also correspond to the same time of year as Lyme cases, which suggests that Bartonella can also be passed by ticks.
The Central Nervous System (CNS) symptoms of Bartonella are very similar to those of Lyme. There were 327 patients initially treated for Lyme and 92% of them tested positive for Bartonella. Fein said that Bartonella is difficult to diagnose and treat and becomes chronic in an unknown number of people.. She says that further studies should be initiated to better understand this issue. Testing for this infection is very important because Bartonella requires different treatment than does Lyme. Some antibiotics which work best for treating Lyme would not work well in the treatment of Bartonella.
Dr. Steven Phillips wrapped up our conference with a comprehensive and informative presentation concentrating on the connections between Lyme Disease and Multiple Sclerosis. He is the President of the International Lyme and associated Diseases Society (ILADS), www.ILADS.org and has been researching Lyme Disease for the past 15 years.
Dr. Phillips spoke of the cyst or L form of the Lyme spirochete and how the approved current testing does not look for these forms. The Lyme organism can change forms according to the condition of the body. The proteins on the spiral forms are very different from the proteins on the cyst form. He made some interesting points; he believes that most people with Lyme are asymptomatic and that Lyme can have a long latency period - neurologic symptoms can present themselves many years later after the initial infection or bite.
He went on to say that Multiple Sclerosis is a chronic central nervous system infection similar to Lyme. Every feature you see associated with M. S. can also be found in Lyme. Lyme testing is badly flawed, but even with these drawbacks, it has been found that M.S. patients are twice as likely to test positive for Lyme.
Phillips said that when the spiral form of Bb was injected into the spinal fluid, there was 100% conversion of Bb from the spiral form to the cystic or L form. The cyst forms of the Lyme germ are being found in the spinal fluid of M.S. patients. He then made the following crucial point: steroids are frequently used to treat M.S., but steroids can increase bacterial growth and make Lyme much worse. Lyme testing is very inaccurate, especially in those with a long-term chronic illness.
Dr. Phillips presented study after study which support the fact that chronic Lyme is not a "post Lyme" autoimmune condition but rather an ongoing chronic infection. He also showed us an extensive number of studies which link M.S to Lyme Disease, and explained that one of the clues that Lyme can be a chronic infection is the herxheimer reaction. A herxheimer reaction is a worsening of symptoms when initially being treated with antimicrobials. This indicates that the treatment is working, -that the medicines are hitting the target and creating a type of cleansing reaction.
Phillips strongly suggested that Bb may be one of the causes of M.S. He stressed that persistent infection can occur despite long-term antibiotics. He also mentioned that brain and cervical cord lesions are found in both Lyme and M.S. Phillips called for a large-scale treatment of antibiotics in Multiple Sclerosis.
This conference was not concerned exclusively with the Lyme bacteria but was revealing to us that Borrelia burgdorferi, along with many other co-infections may be at the root of many of our autoimmune diseases.
You can view this whole conference on DVD. For more information on how to order please contact Randy Sykes at 1-860-658-9938