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Lyme Disease Support Group
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06/10/2008 19:59
chickiechick
Posts: 44
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 Hi everyone! Well I broke down and emailed my primary doc about the ongoing fatigue. when i went to him last year it was found that i had Mono. I do not believe that it was a new infection. Anyway wrote to him and explained to him that i am at my wits end with the fatigue. I also imformed him that i was never tested for co-infections and asked if it was something that he would consider testing me for. I do not feel that i have any co-infections, just trying to figure out why the on going fatigue. it had been about three years now and i have had enough of it!!!

Teri
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06/10/2008 20:10
tmbro22
Lime Green Ribbon
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 I definitely wish you much luck! Don't give up on it! I suffered for two years before treatment began. I am still incredibly fatigued, and I am calling the doctor tomorrow! I understand your frustration, I think we all do! I was tested for the epstein-barr virus multiple times. I have NEVER had mono, but at the time that I tested positive for Lyme disease I also suddenly tested positive for the Epstein-barr virus. I found out later that the EBV test was positive because the test cross reacted with the Lyme disease bacteria. Maybe you don't have mono, it could have been the Lyme disease all along. Anyway, I think many doctors want to explain the Lyme disease away by blaming it on another ailment. Have you tried seeing an Infectious disease specialist or a Rheumatologist? A rheumotologist found my Lyme disease. Sorry this is so long . . . I have had a lifetime of experiences with doctors at this point!

~ fellow Lymie (tmbro22)
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06/10/2008 20:20
chickiechick
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 Me again, yes saw about 4 infectious docs and one Rhuematoid. Two neurologists ansone orthopediac. My primary at the time (1998) was the one that found the Lyme.

Has anyone treated you for the fatigue? i was given Provigil once for it but when it wore off I totally crashed, and that was before the CMT so i am afraid that if i took it now that the more activity would be worse on my muscles.

I did not know that the test for Mono cross reacted with Lyme bacteria. Intersting!

don't ever worry about your reply being "too long". i really appreciate the time that you and others take for me! Heck i would not care if it was three pages long!! I truly appreciate everything!!

Have you ever been diagnosed with CFS?

Teri
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06/10/2008 21:32
tmbro22
Lime Green Ribbon
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 Many doctors thought I had CFS or Fibromyalgia, but after the Lyme test came back positive (five of them) the definitive diagnosis was chronic or "late stage" Lyme. The symptoms are really similar between all three and its hard to tell where one ends and the other begins! I have not been treated for the fatigue. The IDS was more interested in decreasing my heart palpitations and neurological symptoms. Other than the fatigue I find that headaches and joint pain are the worst symptoms to deal with. Indescribable pain! I can't imagine dealing with this disease for as long as you have! I admire your strength, and I hope I have the same stamina (I think it might be awhile before I experience real relief)! In the mean time I feel really fortunate to be apart of a group of people who are all dealing with the same thing and show such compassion for one another!

~ tmbro22
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06/11/2008 04:56
chickiechick
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 It is great to be able to talk to people who understand what we are going through. It is such a hidden disease like the CMT is for a lot of people. Like the old saying goes....you look good, how can you be sick! I think that is the most frustrating thing, I swear if we all had a deformity people would be more undestanding towards us.

Hope today finds you well!!! Gotta go attempt to look presentable for work!!

Teri
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