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MS/Lymes--Anyone have them? How do you get a diagnosis?
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<blockquote data-quote="Josie" data-source="post: 281326" data-attributes="member: 1792"><p>Chronic Lyme Disease, which is what you would possibly have, is very controversial. The prevailing viewpoint, from IDSA doctors, is that Lyme can be cured with 4 weeks or less of antibiotics and whatever symptoms you are left with are an autoimmune response to the infection. They do not acknowledge chronic Lyme.</p><p> </p><p>The other viewpoint is that an infection can remain after antibiotics and that long term antibiotics can help. These doctors are a smaller group and belong to an organization called ILADS. These doctors diagnosis Lyme clinically and use Western blot test from a lab called IGeneX as a support for their diagnosis. This IGeneX test is viewed to be the most accurate by the ILADS doctors, but even it is only 80% (I think) accurate.</p><p> </p><p>A Western blot test done by a lab other than IGeneX does not test for as many bands and will not detect Lyme as frequently. On the other hand, the IDSA doctors feel IGeneX has too many false positives.</p><p> </p><p>Most neurologists have aligned with the IDSA doctors. If I were you, I would ask the neurologist for a Western Blot Lyme test, preferably from IGeneX. They probably won't want to use that lab, so you could start with the regular test. If is positive, then you won't have to spend the extra money on the IGeneX test. My insurance paid only a small part of this test.</p><p> </p><p>If you really want to rule out chronic Lyme, you should go to an ILADS doctor. Generally, they do not take insurance. You can read a lot of bad things about them on the intenet, but the ones I have met seem honest and educated to me. They will spend a couple of hours on the first appointment and rule out other illnesses before diagnosis'ing Lyme. Many of them started treating Lyme when someone they knew had chronic Lyme and they could see that treatment helped.</p><p> </p><p>It is hard to know which side of the chronic Lyme debate is right. However, I have Lyme diagnosis with a few symptoms of Lyme (muscle twitching, shortness of breath, and joint pain are the main ones) and a positive IGeneX test. When I take antibiotics, these symptoms are mostly gone so I think the ILADS doctors have more to offer. My regular doctor thinks stress is causing my shortness of breath so I haven't found her to be very helpful. I am certain that my shortness of breath is not an anxiety attack, especially since it goes away on antibiotics. </p><p> </p><p>I always thought MS was a clinical diagnosis, too, and that there was no known cause. At least some of the ILADS doctors believe MS can be caused by Lyme. The MS and Lyme symptoms have a lot of overlap as you have seen.</p><p> </p><p>I hope you can get some answers and some help.</p></blockquote><p></p>
[QUOTE="Josie, post: 281326, member: 1792"] Chronic Lyme Disease, which is what you would possibly have, is very controversial. The prevailing viewpoint, from IDSA doctors, is that Lyme can be cured with 4 weeks or less of antibiotics and whatever symptoms you are left with are an autoimmune response to the infection. They do not acknowledge chronic Lyme. The other viewpoint is that an infection can remain after antibiotics and that long term antibiotics can help. These doctors are a smaller group and belong to an organization called ILADS. These doctors diagnosis Lyme clinically and use Western blot test from a lab called IGeneX as a support for their diagnosis. This IGeneX test is viewed to be the most accurate by the ILADS doctors, but even it is only 80% (I think) accurate. A Western blot test done by a lab other than IGeneX does not test for as many bands and will not detect Lyme as frequently. On the other hand, the IDSA doctors feel IGeneX has too many false positives. Most neurologists have aligned with the IDSA doctors. If I were you, I would ask the neurologist for a Western Blot Lyme test, preferably from IGeneX. They probably won't want to use that lab, so you could start with the regular test. If is positive, then you won't have to spend the extra money on the IGeneX test. My insurance paid only a small part of this test. If you really want to rule out chronic Lyme, you should go to an ILADS doctor. Generally, they do not take insurance. You can read a lot of bad things about them on the intenet, but the ones I have met seem honest and educated to me. They will spend a couple of hours on the first appointment and rule out other illnesses before diagnosis'ing Lyme. Many of them started treating Lyme when someone they knew had chronic Lyme and they could see that treatment helped. It is hard to know which side of the chronic Lyme debate is right. However, I have Lyme diagnosis with a few symptoms of Lyme (muscle twitching, shortness of breath, and joint pain are the main ones) and a positive IGeneX test. When I take antibiotics, these symptoms are mostly gone so I think the ILADS doctors have more to offer. My regular doctor thinks stress is causing my shortness of breath so I haven't found her to be very helpful. I am certain that my shortness of breath is not an anxiety attack, especially since it goes away on antibiotics. I always thought MS was a clinical diagnosis, too, and that there was no known cause. At least some of the ILADS doctors believe MS can be caused by Lyme. The MS and Lyme symptoms have a lot of overlap as you have seen. I hope you can get some answers and some help. [/QUOTE]
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MS/Lymes--Anyone have them? How do you get a diagnosis?
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