Posted by florence on May 12, 2004, at 11:44:39
In reply to Attention - florence - CFS - I may be able to help, posted by jlbl2l on May 10, 2004, at 20:15:46
>I was very happy to read your post. I would appreciate communicating with you. I am having an especially bad week-so fatigued that I can hardly type this message. To simplify: I have been bedridden with fatigue since January. CFIDS was ruled out about 5 years ago when I was experiencing the same relentless fatigue. In hindsight, I am almost POSITIVE that the Lupron shots (leuprolide acetate-GnRh agonist or LH agonist?) I received altered my hypothalamus. I was completely FINE last year while on the Lupron shots. FM is now listes as a possible side effect of Lupron but CFIDS is not. But since many people have both FM and CFIDS, I suspect a Lupron connection. I do not have any joint pain and no immune problems or infections. just the relentless fatigue.I was told by several drs that it was probably depression. But ADs have not really helped; often exacerbated my fatigue. Provigil helped me for a long time but is doing next to nothing now; possibly helping me feel more alert even though I am still in bed. I would be most grateful to you for any insight you can share. I keep very up-to-date on CFIDS and FM research. But Nova Bouknight of the CFIDS (?) info center emailed me that she had never heard of Lupron and was rather surprized that no one had ever inquired about its use. (She has been at the CFIDS (?) Center for over 11 years.. I really have to stop now-my mind is not focusing very well. I am probably going to try Klonopin next but I don't have much hope that it will do much...since nothing else had helped much. Since Sonata (zaloplom) lifted my mood when taken with the provigil..my current research involves the GABA or whatever...but I am too foggy to pursue it any more right now.. Please keep in touch..unlike most people: when I am off the laptop, it is usually becuase I do NOT feel well. Thanks for listening and contributing!
>
> i happen to be an expert on chronic fatigue syndrome. i work with the president of the national chronic fatigue foundation's president (gail kansky) and am HIGHLY knowledgable on all the latest information and theories - including the latest (the ciguatera epitope/& Martin's stealth virus findings). I am in contact with many researchers regarding CFS and FMS. If you would like we can pursue this discussion via email. Let me know.
>
> jlbl2l
poster:florence
thread:345256
URL: http://www.dr-bob.org/babble/20040510/msgs/346144.html