Got Lyme? Are You Sure? - facebook prikbord

The smart people with Multiple Sclerosis are beginning to realize that CCSVI is more complex than having a "roto rooter" job in your jugular veins. Those who expect to have the angioplasty by any interventional radiologist and jump off the table are going to be disappointed. Many already have been. There are many sides to this issue, but lately we have been discussing Lyme Disease. It's too bad that we aren't being tested for it. There are people who have tested positive for Lyme and CCSVI, but do not meet the criteria for Multiple Sclerosis. This is a long read. If you have ever been tested for Lyme disease and told you don't have it, you might want to reconsider. Very few people actually see the "bullseye " rash commonly associated with diagnosis of Lyme. You don't have to live in the woods, raise reindeer or go camping to be exposed to it. In fact you can be a hermit living in a padded cell and get Lyme Disease. If a doctor tells ypou all you need to do is pee in a cup....find another doctor. If you want to waste a long distance call you can contact the Center for Disease Control. That would be another exercise in futility....ANYONE SUSPECTED OF A NEUROLOGICAL DISORDER SHOULD CONSIDER LYME AS A POSSIBILITY......Linda Rousay

Lyme disease is a worldwide infectious disease caused by microscopic bacteria carried by deer ticks.

There are several species of deer ticks that become infected with the Lyme bacteria, Borrelia burgdorferi. Unsuspecting humans and animals may be bitten by a tick and never know it. The tiny ticks, some the size of poppy seeds, may stay on your body for hours to days. The tick engorges itself with blood, and the Lyme bacteria is transmitted to the bloodstream of the person or animal during the bite.

Early recognition is important. If you find a tick attached to your skin, if you were in a known tick-infested area, or if your symptoms resemble those described below, see a physician with experience in treating Lyme disease.

A red "bulls-eye" rash at the site of the bite is present in 50% of patients. The rash may appear within days to weeks after the bite.

Some patients report flu-like symptoms, fever, aches, fatigue, neck stiffness, jaw discomfort, muscle pain and stiffness, swollen glands, and red eyes. Symptoms may appear, disappear and reappear at various times.

Nervous system abnormalities including partial facial paralysis (Bell's Palsy), migratory joint pains and pains in the tendons, muscles and bones may occur later in the disease. Joint symptoms, if present, usually affect the large joints like the shoulders, hips and knees.
- Lyme disease is a clinical diagnosis. This means that your physician makes the diagnosis using your clinical history and symptoms. Unfortunately, many doctors are unaware of the correct tests or attribute your symptoms to something else. As always: SELF ADVOCACY is the only way to safeguard your health.
- A variety of tests are available. Many doctors who are unfamiliar with Lyme disease may only use the test available in their local laboratory. In many cases this is the Lyme ELISA (EIA) or IFA, often-called “Titer Test”. These tests measure a patient's antibody, IgM and/or IgG, in response to exposure to the Lyme bacteria. By today's standards, these tests are not very sensitive.
- The Western Blot tests (IgG and/or IgM) are much more sensitive and specific than the above titer tests. With the Western Blot, the laboratory can actually visualize the exact antibodies you are making to the Lyme bacteria. In some cases the laboratory may be able to say that your “picture of Lyme antibodies” is consistent with early disease, with persistent/recurrent disease or maybe even with long-term disease. Not all patients have antibodies at all times when they are tested. Antibodies are more commonly detected within the first year after infection, although reinfection may cause a significant increase in antibodies. At most, only 70% of patients have antibodies that are detectable by Western Blot testing.
- PCR (Polymerase Chain Reaction) test detects the presence of the DNA of the Lyme bacteria. PCR tests have more sensitivity early in the disease before patients have received antibiotics. This is a relatively expensive test. The best specimen to test has not been defined. The test can be performed on whole blood, serum, urine, (NOT MY FIRST CHOICE)synovial fluid and spinal fluid.
- Physicians are often asked what is the best test for Lyme disease. That is a difficult question because there is no one best test. Lyme disease is complicated. It may mimic or masquerade as arthritis, muscle aches, flu, cardiac disease, chronic fatigue, fibromyalgia, multiple sclerosis, autoimmune diseases such as lupus and rheumatoid arthritis, or other illnesses. Some of these diseases require multiple tests and so does Lyme.At a minimum, the IgM and IgG Western Blots for B. burgdorferineed to be ordered. If your physician suspects an autoimmune disease (i.e., systemic lupus or rheumatoid arthritis), an ANA or rheumatoid factor test may be needed.
- Patients with neurological symptoms of Lyme disease may need to have a spinal tap in order to study “the blood of the brain,” the spinal fluid. These patients may have negative blood tests and show positive results with spinal fluid. The Western Blot and PCR tests can be performed on spinal fluid
  - Lyme disease can be treated successfully with antibiotics if caught early in the infection. Patients whose disease is caught later often need to be on antibiotics for longer periods of time. There is controversy as to how long and what is the best mode of treatment. In general, oral antibiotics are effective, but intravenous antibiotics may be necessary for complicated Lyme disease.

Lyme can lay dormant for years in to body, and takes prolonged courses of antibiotics once it does flare. In addition, Borreliahas many more genes than does T. pallidium that are dedicated to evading detection by tests and the immune system, enabling the dozens of known subspecies/strains of Borrelia to protect itself, even when finally treated appropriately.

This isn't news, by the way, but most physicians, state medical associations, university hospitals, and public health agencies prefer to keep their heads buried firmly in the sand than admit that Babesia, Bartonella, Borrelia, and Ehrlichia are far more complex than originally thought, making them extremely difficult detect and treat, especially in people who have been sick and improperly diagnosed and/or treated for years.

It is apparent that their egos are more important that the public's welfare, given the many ways these organizations and agencies, charged with informing and protecting the public's health, continue to fail to do so.

Scarily enough, there are still health care providers out there who do not believe Lyme Disease is a real disease. Like those with CFS, FM and MCS, people with Lyme are told they are "just depressed" or "trying to get attention" or that it is "all in your head" (to be fair, since the spirochetes or their toxins can cross the blood brain barrier, it is in your head, though this is not quite what these doctors were implying...). If this typifies the response you got from your doctor, it's time to find a new one.

Most doctors rely on the CDC for information about Lyme disease. bad mistake. Anyone who has watched the CDC in action over the past several years (okay, decades know that whatever it is they are doing, it has little to do with disease control and prevention, especially when it comes to organisms as changeable and adaptive as parasites.

The CDC--and insurance companies--take their cue on what Lyme disease is and how to treat it from the ISDA, a group of self-serving physicians who selectively review only that literature which agrees with their premise: that LD is easily and quickly treated, and if you're still sick, then you're clearly mentally ill.

. http://tinyurl.com/czdxku This is a very good article from the Huffington Post.

http://igenex.com/Website/

Only one out of every 10 cases of Lyme disease is reported to the CDC.

"...Lyme disease has become a permanent part of America's public health landscape. It provides a warning and example of how an apparent state or regionally-centered problem can grow to become a national problem. Instead of implementing a proactive, nationwide animal-borne disease management strategy, the public health response to Lyme disease was left to evolve as the disease spread across country."

When the ELISA or Western Blot tests are positive, they are significant. However, when they are negative, they are incapable of determining the complete absence of active infection somewhere in the body. All it takes to validate this is a single case history of a patient who is sero-negative for Lyme disease (the absence of Lyme antibodies), but is culture positive for the bacteria.

Free antibodies are detectable with the current Lyme tests, but antigen/antibody complexes are undetectable using either the ELISA or Western Blot tests. It has been suggested that complexes are the biggest weakness of both the ELISA and Western Blot tests and yet they are completely ignored when Lyme tests are given.

DNA Amplification or PCR (Polymerase Chain Reaction) Tests:

Every living cell has DNA that is unique to that species of organism. This is true from the simplest bacteria to the most complex mammal. The polymerase chain reaction test is a test that can search for a specific sequence of DNA and multiply that sequence a billion times in less than a day. It is often said that the PCR test is the most sensitive and specific diagnostic test available. However, PCR tests are not without their drawbacks.

Specificity is a big problem with today’s Lyme tests. It sounds good to hear things like, “This is the most specific test on the market!” Those buzz words meant to promote and sell a test, however, should throw up a red flag to anyone who understands this family of bacteria. The family of bacteria that Lyme disease spirochetes belong to isthe borrelia family. Borrelia is the same group of bacteria that cause tick-borne-relapsing-fever. There are more than 40 different disease-causing subspecies of borrelia that are closely related to the Lyme spirochete.

Variability in the borrelia family of bacteria is not only routine; it is actually built into the genetics of the bacteria to add variations its proteins when stressed during division. This is what causes relapses of symptoms in relapsing fever. The bacteria presents one set of proteins to your immune system and then six weeks later, the bacteria adapt and present new variations of surface proteins to your immune system. In turn, your own immune system is what makes you feel sick, sweaty, feverish, and ill with each new set of antigens presented.* The Lyme bacteria uses a slightly more subtle form of this morphogenic antigen variability, but it, too, like its cousins, is capable of changing its outward appearance like a criminal changing his disguise.

Escaping the immune system is very important if you want to survive as a bacterium. Borrelia has several mechanisms to do this, but this mechanism of gene variability and variable proteins make both serology antibody tests and PCR tests less effective.

One could easily make a case that Lyme disease and all of its Lyme-like cousins are nothing more than variations of Relapsing-Fever. In America, we now have at least two geno-species that cause Lyme disease, which are not Borrelia burgdorferi. The truth is, we may have a situation with Lyme disease that is similar to relapsing fever, in that there are dozens of yet to be discovered species of borrelia that cause disease but are not Borrelia burgdorferi.

Would you want to be denied medical treatment, medical coverage, and your good health, all because the test you are given is so specific that it excludes all other borrelia? What we need in America and other Lyme-endemic countries is not a hundred different species-specific tests, but rather one general screening test for Borrelia. This is true for the antibody tests as well as the PCR DNA tests. Suddenly the buzz-word SPECIFICITY has become a dirty word. Specific also can mean exclusionary!

Systemic: Borrelia burgdorferi and other spirochetes in the tick-borne relapsing fever family of bacteria circulate through the blood stream to the entire body. They can find passage through blood vessel walls and invade other tissues and organs, including known target tissues such as skin, tendons, joints, heart, nerves, and brain.

Sequestered: The Lyme spirochete can find haven in areas of the body that are poorly protected by the immune system (the brain), have poor areas of blood circulation (tendons), or where the bacteria can lay metabolically inactive for lengths of time and resist antibiotic penetration (the skin and the brain).

Multi-systemic: The bacteria has affected more than one system of the body, such as: Peripheral nervous system, skin, joints and connective tissues, cardiovascular system and circulatory system, eyes, muscles, liver and spleen, and central nervous system.

Blood Brain Barrier (BBB): The network of capillaries surrounding the brain that selectively let things in and out of the brain. A healthy BBB prevents infections, white blood cells, and many medicines from entering the brain. A breakdown of the BBB is not a good thing, and occurs very early in most animal models of Lyme disease.

Antigen: A protein usually on the surface of the bacteria that stimulates the immune system to make antibodies against that protein. Antigens can also stimulate other immune responses, such as T-cell and macrophage responses.

Serologies: Using the centrifuged serum extracted from blood to look for antibodies against the Lyme bacterium.

Titer: A measurement of antibody content in the serum. Titers are usually reported as dilution series. The higher the dilution of serum where antibodies are still detectable means there are more antibodies present in that patient’s serum. The cut off for reporting a positive is a bit arbitrary and varies from lab to lab. Institutions conservative on the diagnosis of Lyme have raised their cutoffs from 1:256 to 1:1024 Which is rare to see in most Lyme patients.

Infection Load: The actual number of bacteria in a host. If the bacteria remain in the bloodstream, the number of bacteria per unit of blood can be calculated, but this number is meaningless if the infection has moved beyond the bloodstream. In Lyme disease, there is no accurate way of determining true infection load. If the bacteria out pace antibody production then there is no FREE ANTIBODY only ANTIBODY COMPLEXES

Lawrence C, Lipton RB, Lowy FD, and Coyle PK. Seronegative Chronic Relapsing Neuroborreliosis. European Neurology. 1995;35(2):113-117

Cleveland CP, Dennler PS, Durray PH. Recurrence of Lyme Disease Presenting as a Chest Wall Mass: Borrelia burgdorferi was present despite five months of IV ceftriaxone 2g, and three months of oral Cefixime 400 mg BID. The husband was seronegative for Lyme and highly symptomatic. The wife had a high tier of antibodies, but had mild symptoms. The excised fibrous mass was culture positive for Borrelia burgdorferi despite eight months of continuous high dose antibiotics. Poster presentation, LDF International Conference on Lyme Disease Research, Stamford, CT, April 1992 *

Preac-Mursic V, Wilske B, Schierz G, et al. Repeated Isolation of Spirochetes From the Cerebrospinal Fluid of an Antibiotic-treated Patient with Meningoradiculitis Bannwarth’ Syndrome. Eur J Clin Microbiol 1984;3:564-565

Preac-Mursic V, Weber K, Pfister HW, Wilske B, Gross B, Baumann A, and Prokop J. Survival of Borrelia Burgdorferi in Antibiotically-treated Patients with Lyme Borreliosis. Infection 1989;17:335-339

Schmidli J, Hunzicker T, Moesli P, et al. Cultivation of Bb from Joint Fluid Three Months After Treatment of Facial Palsy Due to Lyme Borreliosis. J Infect Dis 1988;158:905-906

Stanek G, Klein J, Bittner R, Glogar D. Isolation of Borrelia Burgdorferi from the Myocardium of a Patient with Long-Standing Cardiomyopathy.

Abstract # D654: J. Nowakowski, et al. Culture-Confirmed Treatment Failures of Cephalexin Therapy for Erythema Migrans. Two of six patients biopsied had culture-confirmed Borrelia burgdorferi infections despite up to 21 days of Cephalexin (500 mg TID) antibiotic treatment.

Abstract # D655: Nowakowski, et al. Culture-confirmed Infection and Reinfection with Borrelia Burgdorferi. A patient, despite antibiotic therapy, had a recurring Erythema Migrans rash on three separate occasions. On each occasion, it was biopsied and revealed the active presence of Borrelia burgdorferi on two separate occasions, indicating reinfection had occurred.

Abstract # D657: J. Cimperman, F. Strle, et al. Repeated Isolation of Borrelia Burgdorferi from the CSF of Two Patients Treated for Lyme Neuroborreliosis. Patient 1 was a twenty-year-old woman who presented with meningitis, but was seronegative for Borrelia burgdorferi. Subsequently, six weeks later, Bb was cultured from her CSF and she was treated with IV Rocephin, 2 grams a day for 14 days. Three months later, the symptoms returned, and Bb was once again isolated from the CSF. Patient 2 was a 51-year-old female who developed an EM rash after tick bite. Within two months, she had severe neurological symptoms, but her serology was negative. She was denied treatment until her CSF was culture positive, nine months post-tick bite. She was treated with 2 grams of Rocephin for 14 days. Two months post-antibiotic treatment, Bb was once again cultured from her CSF. In both of these cases, the patients had negative antibodies but were culture positive, suggesting that the antibody tests are not reliable predictors of neurological Lyme disease. In addition, standard treatment regimens are insufficient when infection of the CNS is established, and Bb can survive in the brain despite intravenous antibiotic treatment.

Abstract # D658: F. Strle et al. Reinfection with Borrelia Burgdorferi in Endemic Areas. Conclusion: Even despite high antibody titers, as seen in ACA patients, 7% of 2273 patients with previous Lyme disease became reinfected and presented with an EM rash and late symptoms after a recent tick bite.