I am not kidding–this is THE MOST balanced–research focused and EVENLY PRESENTED information about Lyme disease that I have EVER SEEN online!!! I believe ANYONE considering, curious about, wondering for themselves or someone else or who might have a question would find quality and balanced answers on this site. It explains the controversy and is FAIR to both sides.
An extremely valuable resource—
Here’s why I went to it–I thought I had Lyme at one point early in my story–I had good reason to think so some of which having to do with the fact that I live on the East coast of the US and live an at risk lifestyle when it comes to tick exposure. I was treated for more than 8 months but when I was treated for migraine and had success with topamax I decided that MAV was the better diagnosis. I have now been diagnosed with some level of myelitis confirmed via MRI, and so I’ve begun to wonder about the LYme connection again–though I will say that the topamax has continued to keep me well grounded and away from the dizzy side of life.
I’m not saying that we all have lyme, nor am I saying we all have MAV. I’m saying that the resource above is well balanced and RESEARCH BASED. Worth a look if you are at risk of having been bitten by a deer tick or other lyme carrier.
Dolf – that is a very good indeed. Thanks for posting.
FINALLY, something that is rational and believable instead of the hyperbolic bullshit we have been hearing occasionally here. This, for example, is the sort of thing I like to see and exactly what I suspected:
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What is the significance of band 41 on the IgM and IgG Western Blot? There is much controversy over this band. I know it is not a Lyme specific and the CDC requires more bands to be present before making a diagnosis. However, it is a band that is for bacteria, so what else could cause that to be positive if not Lyme (and you do not have syphilis or an auto-immune disorder)? Thank you.
The 41 kd band is often found on the Western blot. We did a study where we looked at the banding patterns of patients with chronic Lyme disease and healthy controls from the inner city of NY who have never had Lyme disease. [size=120]We found that a large percentage of the healthy controls tested positive on the 41kd band[/size]. For that reason, we don’t feel the 41kd band has much clinical signfiicance in guiding us as to whether a person has been exposed to the agent of Lyme disease. One reason a positive 41 kd band might emerge is that our mouths contain non-pathogenic spirochetes; it is conceivable that some may seed the blood stream periodically and lead to the positive 41kd immune responses.
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So you have to wonder what other bands are found in healthy controls and what Igenex reports as unhealthy.
Yes band 41 is defo not Lyme specific. It tests for antibodies against flagella. Obvs loads of bacteria have flagella. Igenex do state this on their results. They also detail 3 other bands that can cross react with other bacteria. It is the outer proteins specific to Lyme that people should look for a reaction against. Good site thank u. Xxx
Here is what I find most valuable on the site. It explains the controversy in such a balanced and FAIR way–no anger, no defensiveness, just the facts and the understanding behind what and how this all came to be. With this sort of debate–versus the heated, emotional and unbalanced debates I’ve seen in many cases–progress could actually be made!!!
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The Lyme Disease Controversy
The CDC clinical criteria for Lyme Disease which exist for the purpose of monitoring the rate of Lyme disease nationally are quite narrowly defined in order to ensure a high degree of specificity in the diagnosis. These criteria are mainly useful for the early stages and rheumatological presentations of Lyme Disease, such as when a patient appears with an erythema migrans rash, arthritis, a Bell’s palsy, or early central neurologic Lyme disease (meningitis or encephalitis). The CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease. For example, the most common manifestation of late neurologic Lyme Disease is cognitive dysfunction (often referred to as “encephalopathy”). A patient who presents with new onset encephalopathy and a positive blood test for Lyme Disease would not be considered by the CDC to be a case of Lyme disease. Although the CDC recognizes that Lyme encephalopathy exists, encephalopathy is not part of the “surveillance case definition”. Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease; in these cases, the patient’s treatment will either not occur or be delayed. Such delay in treatment may result in an acute treatable illness becoming a chronic less responsive one.
Other physicians who use a broader more inclusive set of clinical criteria for the diagnosis of Lyme disease will make the diagnosis of Lyme Disease and initiate treatment. The latter group of doctors, by treating some patients for “probable Lyme Disease”, will make use of antibiotic responsiveness to confirm their diagnostic impression. These physicians, by erring on the side of not letting a patient with probable Lyme Disease go untreated, will help many patients who otherwise would not get treatment; undoubtedly, however, because of the inclusiveness of their diagnostic approach, these physicians will also treat some patients with antibiotics who do not have Lyme Disease. These physicians would argue that the serious consequences for physical, cognitive, and functional disability associated with chronic Lyme Disease outweigh the risks of antibiotic therapy.
**Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles, although the therapeutic approaches differ considerably stemming from the narrow vs broad criteria for diagnosis. **This is the essence of the medical controversy surrounding chronic Lyme disease. Until medical doctors have a test that definitively identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue.
Scott - I wanted to add that you are correct about band 41. It is NOT Lyme specific. It IS sometimes one of the first bands that appear when someone has Lyme Disease, but it is definitely NOT Lyme specific. When looking at western blot results, what one needs to look for are Lyme Specific Bands. those are the ONLY bands that count.
I’m not sure if you saw, but I mentioned numerous time to read, “Cure Unknown,” by Pamela Weintraub. It has 40+ pages of references. Discusses Fallon’s research from Columbia University, as well as the research that you talk about. I know that you like when people are “level headed” when discussing Lyme Disease, and I can tell you without a doubt that she is level headed. What is good about this book, is it goes through years and years of research in chronological order and discusses the research in context. She can explain things way better than me. I cannot help but be passionate about all of this, as this is very personal to me, as this is my life.