Triggering agents/factors for CFS: While early studies of CFS sought to identify a single agent that caused the illness, most researchers now appear to agree that CFS can be “triggered” by a number of different insults including microorganisms (bacteria, viruses, etc.), environmental exposures and severe injuries (such as closed head trauma). At this conference, researchers reported data on a number of agents that set off a CFS-like illness.
My physician has me addressing the bacterial issues (mycoplasmas, etc) that is the underlying cause of my illness (my opinion along with some other physicians) and is waiting for the results from the next Valcyte trial. Since I am making progress on my current treatment, I may decide to stick with it, although it takes years.
My doctor wants me to start Valcyte for my elevated HHV6 and EBV antibody levels. I will post them and if anyone here has any thoughts on them I would very much appreciate it. I know this isn't an HHV6 forum but I will post the test results as well.
HHV6 Ab IgG 21.44 (range 0.1-1.1)
EBV Early Ag IgG - 40 (no range was listed on either of these)
EBV Anti VCA IgG - 640
The mono screen was negative as was the EBV Anti VCA IgM
It all began with "flu" symptoms almost 7 years ago.
Hi Frank,
Welcome aboard ! You know Michelle Akers, the soccer player ? She has CFS.
There is a lot of good information on this board and don't give up.... there are treatments for chronic EBV & CFS. Feel free to check out my entire profile and visit my website. I list the treatments on my website recommended by the fibro/CFS experts. I strongly suggest you check it out because one thing I've noticed with having this condition is that you have to be pro-active.
There is one antiviral, Valcyte, that apparently is either curing or putting some CFS patients in remission... but the risks involved with Valcyte are too risky for me.
(about Valcyte: http://www.drpodell.org/chronic_fatigue_syndrome_hhv6.shtml )
Knowing that the majority of CFS patients have mycoplasma (L-form bacteria) infections, I prefer the pathogen killing treatments over the antiviral treatments.
Dr. Jose Montoya at Stanford University had a successful outcome for his first research trial using Valcyte. I believe the results of his second study are still pending.
Lastly, two-thirds of CFIDS patients have bacterial infections. Another thing to think about is if you are one of these people who have L-form bacteria, then it probably wouldn't be a good idea to take antivirals. Testing for this sub species (and others) mycoplasma is not easy and insurance may not cover the expense.
It is working, although it takes years and can make you feel worse. But it is intended to cure CFS... just like the drug Valcyte. But Valcyte is an immunosuppresant and has some very toxic and possibly deadly side effects.
If you have any questions for Dr. N... zip them my way before 5 PM (Pacific Time) today. Send them via PM or note.
Many people may have a high EBV titer and perhaps symptoms of EBV for years.... I honestly think these people should see a CFS physician and get it addressed ASAP. Of course CFS symptoms are :
A CFS diagnosis should be considered in patients who present with six months or more of unexplained fatigue accompanied by other characteristic symptoms.
It sounds like you have EBV virus induced CFS. EBV is notorious for causing peripheral neuropathy and autonomic system disorder which are the symptoms you describe. I had all this tested at a special neurodiagnostic lab and that's what I have. It sounds like you're taking all the right meds. There's also these stocking you can wear. google peripheral neuropathy treatments. Also check out a dr who'll treat your ebv/cfs with anti virals such as valacyclovir or valcyte.
I am convinced this stems from the EBV when I had mono. I have been reading about CAEBV and CFS. My feeling is that the EBV has triggered CFS or it has lead to a persistent illness in my system.
I do not know where to go from here. I have been to my family doctor several times and he has ruled out other causes of fatigue (e.g. depression, testing thyroids), but I don't seem to be getting any solid answers.
I have been diagnosed with cfs for a few years now, the dr told me then handed me anafranil which is for people with narcolepsy, i couldn't take it at all, it made ten time more drowsy and weak, so since then my dr has done nothing. my other dr in the surgery told me it was all in my head as he doesn't believe in cfs/fm/depression or generally anything you cant actually see!! so i tend to avoid him like the plague!
CMV is the most common infection is post transplant patients which is why we recipients are prescribed Valcyte for a period of months after our transplants as part of the anti- fungal, anti-bacterial and anti-viral regime of meds along with out immunosuppressants.
In the vast majority of patients, CMV disease responds to treatment with intravenous Cytovene/ganciclovir.
I had chemo for Hep C and got FM. I don't think there are any Chemo's out there for fibromyalgia. The only thing that is supposed to be the FM drug is Lyrica. It works for me. I have been off chemo for a year and have terrible flares of FM, but the Lyrica does help a lot!
However, there is no evidence that fibromyalgia is caused by stress. I would consider asking your physician for the research to back up her claims.
Hi my son has fm/cfs and has had for 4 years he seems to be getting worse or at least the attacks seem to. Some days he seems like my old son he is 31 by the way but the next day he can be in as much pain as ever. I appreciate all of you who suffer with this will have as many and varied painful and irritating symptoms as he, but he has started to twitch in bed at night. His legs have started to jerk and he cannot control it. It has frightened him as this is new.
However after about a week and a half to two weeks the pain went away. I was started on Valcyte about 2-3 weeks after all this. I also had a blood vessel rupture in my eye towards the back making it almost impossible to see anything when I went to try and find out what was going on (Have been seen by three different optometry clinics). I Have also been using Predisonal 4-6 times a day and Cyclopentalate 2 times daily.
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