Posted by TENA/ DIAMOND on 1/2/2009, 3:41 pm, in reply to "Re: Chronic fatigue syndrome fibromyalgia chronic lyme[/b"
Diagnostic Tests
Tests for Lyme disease, like tests for other infectious diseases, are often confusing and circumstantial, and their analysis and interpretation has often been flawed. In infectious diseases you do a Western blot test to see if you have a specific reaction. Western blot separates out proteins antigens of an organism you are looking for. It tells you if a person has been exposed. It is not a direct measurement of the organism. It is a measurement of whether the person has antibodies to it. Antibody tests are useful in the early stages of illness as with other acute infectious illnesses. Once the illness is in a chronic phase, antibody tests are not useful.
Just as viruses change from year to year, we know the Lyme bacteria mutates. There are a number of organisms that can shift their surface protein in a matter of hours and that is how they evade detection and patients test negative. These organisms attach themselves to proteins and conceal themselves-- creating a cloaking mechanism that defies detection. This allows them to get where they want to go-- the nervous system. Once they are inside a cell, the immune system can't see them.
That said, Dr. Donta explained that lab tests have been helpful is some patients with Lyme disease, especially those with arthritis, in whom there are stronger antibody responses than in those with the chronic, multi-symptom form of Lyme. The criteria for the laboratory diagnosis has been patterned after the arthritic form of the disease, and not the chronic form; as a result, there are many physicians who are misinformed about the test's lack of value in chronic Lyme disease. The Lyme Western Blot is helpful when it shows reactions against specific proteins of B. burgdorferi, but can be negative in 25-30 percent of patients who otherwise have chronic Lyme disease.
PCR-DNA tests for Lyme in blood, urine and spinal fluid are rarely positive, most likely because the bacteria and their DNA are not present in those body fluids, but inside nerve cells. Additionally, PCR-DNA studies are very easy to contaminate.
In chronic Lyme disease, the MRI exam of the brain is positive in about 10-20 % of patients. It can show some white spots (unidentified bright objects- UBO) in various areas, similar to those seen in multiple sclerosis (MS), a neurologic disease of unknown cause that has some overlapping symptoms with Lyme disease, CFS and FM, such as the numbness and tingling or paresthesias. (There are also positive MRI findings in CFS and FM patients as well.)
Dr. Donta reported that the brain SPECT scan shows some changes in blood flow to various parts of the brain, primarily the temporal (cognitive processing) and frontal (mood) lobes in about 75 percent of patients with chronic Lyme disease. Patients with CFS have also been reported to have some brain SPECT scan changes, frequently involving the occipital lobe. No comparative studies have been made among patients with chronic Lyme disease, CFS and FM. The mechanisms underlying these changes remain to be defined, but may be due to a mild vasculitis (inflammation of blood vessels) or to a signaling problem within the nerve network of the brain in those specific areas. It is promising that these changes are reversible in most patients treated with antibiotics that appear to be effective in treating the chronic Lyme disease. These MRI changes are often slow and may take a year to reverse themselves.
These are covert organisms we are dealing with. We need more direct detection methods for blood, spinal fluid and other body fluids. How do you detect organisms in spinal nerve roots or brain? Right now we can't. Nobody is going to biopsy patients. We need an illness registry so we can do direct detection studies, particularly of the brain, after death.
Treatment: Persistence Pays Off
Dr. Donta reported that there are lots of drugs that are active against the Lyme bacteria in the test tube, but the big question is whether the drug can get to the bacteria? Lyme bacteria lives in the cells of the nervous system, perhaps other cells. Dr. Donta has experimented with various intracellular- type antibiotics. He reviewed his journey through various antibiotics. After listening to his patients he decided that some antibiotics were better than others. He then looked at clarithromycin (Biaxin) and azithromycin (Zithromax) which he found had powerful activity against Lyme bacteria in a test tube.
But the antibiotics, by themselves, did not seem to do any good. He found that you need to change the cellular pH (the degree of acidity or alkalinity), making it more or less acidic, to maximize the effectiveness of the antibiotic. This allows the antibiotic to work better i.e. doxycycline seemed to work better when the pH was higher. Dr. Donta has experimented with various agents to adjust pH i.e. amantadine (used to treat flu) and plaquenil (used to treat malaria). He just submitted proposals to NIH to study various agents to determine which is most effective.
Dr. Donta emphasized that the most important aspect of treatment is that it must be long-term-- 12-18 months, sometimes 24-36 months. This length is not unusual in the treatment of infectious diseases i.e. TB. In the first few months of treatment patients can expect an adverse reaction, symptoms will increase and you'll feel worse. You need to be able to hang in through this period, and allow 3-6 months of a treatment trial to determine if it is working. The earlier in the disease process that you start on treatment, the more successful it is. The more chronic the condition the less successful it is, and you'll need to treat over a longer period of time. This treatment resulted in substantial improvement and cures in 80-90% of patients with chronic Lyme disease. There are 10-20% who do not respond-- generally those with a strongly positive Lyme test.
Dr. Donta reported that similar results have been found in some patients with CFS and FM of unknown cause, supporting the hypothesis that some patients with CFS and FM have an underlying infection responsive to those antibiotics. Antibiotic trials in CFS and FM have been limited to one month, a duration that is inadequate to properly evaluate the potential of certain antibiotics to have a positive effect on the disease. Additional studies, examining both potential etiologic agents of CFS and FM as well as treatment trials should lead to a better understanding of both the cause and treatment of patients with CFS and FM.
While this is an interesting theory, this is not the conventional "party line." However, the findings certainly bear attention.
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TENA/DIAMOND
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