This is part 1 of the Connecticut Lyme Disease Conference Summary. Are any of you having problems getting diagnosed...you know something is seriously wrong with you or a loved one but no doctor can pinpoint it? Maybe you have been diagnosed but with something obscure such as Chronic Fatigue Syndrome, Fibromyalgia, Multiple Sclerosis, Alzheimer's, Mental Illness, ADD, ALS or Lupus. If so...you may want to bring this summary to your doctor. Part 2 will be forthcoming. We need to spread the word as to the interconnectedness of our many so called "autoimmune diseases"
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.
Red Flags - Online Conference Center
May 15, 2005
Report From the 30th Anniversary of Lyme Disease -
'With No Compassion Observed!'
May 7, 2005 - PART ONE
Summary by Marjorie Tietjen
Common Cause Medical Research Foundation
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.