Any Personal Recoveries From CFS?

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Soot192
New Member


Date Joined Jun 2006
Total Posts : 1
   Posted 6/28/2006 8:22 AM (GMT -7)   
Have any of you personally recovered from CFS after having it for several years? If so could you please tell your story and how you became healthy again? I have had CFS for about 30 years and see no end in sight.

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/28/2006 3:21 PM (GMT -7)   
Welcome Soot. I'm really sorry you have been battling cfs for so long. Have you had any periods of time where you got any relief from your symptoms?

I did have a period of about 9 years where I felt like my symptoms went into remission, but why it happened is a mystery. I just gradually started feeling better over time and I was able to resume a pretty much "normal" life. Even in remission my body would crash about once a month and I'd spend a few days resting and then about twice a year I would go to the doctor because my fatigue got really severe again. But overall, I was able to be really active and I got into running and other sports. Then in Dec. 2003 I got really sick again and now I'm dealing with suspected lupus. I'm not able to excercise, I've had to cut back on my already part time job and there are days I can barely function.

I really don't have a clue why I got better for that time period, but I still hold out hope for another remission.

I'm sorry I couldn't be more specific. I'm glad you joined and just know that we are here for support.

Take care
Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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ruggedtoast
Regular Member


Date Joined Apr 2006
Total Posts : 44
   Posted 8/15/2006 2:53 PM (GMT -7)   
What have you tried so far? Ive found antidepressants and diet to be the most effective thing but i think it depends on the person.

musicgirl
Regular Member


Date Joined Jul 2006
Total Posts : 23
   Posted 8/17/2006 10:07 PM (GMT -7)   
Hi,
I've had CFS/FMS since 1995, dx in 1997.   I've tried just about everything and nothing worked.  Then in Jan. 2005, I went to see a doctor I had heard about on another CFS site.  His research has shown that CFS is caused by several viruses from the Herpes family.  He found that these viruses attack the heart causing the intense fatigue.  This is called viral cardiomyopathy.  What makes this type of heart infection different from others is that the fatigue is so great that the person literally CAN'T overdo it to the point of destroying their heart and needing a heart transplant.  That's great news. 
 
However, it's still a heart infection.  Dr. Martin Lerner is the name of this infectious disease doctor.  In his research, he actually biopsied patients' hearts and isolated these viruses. 100% of the research patients had these viruses in their biopsies.  What he found in his research was that if a person had elevated viral titers AND T-wave abnormalities on the Holter monitor test, and certain abnormalities on the cardiac ultrasound, then they also had this infection and he didn't need to biopsy their heart.  He discovered that patients usually had either an infection from Epstein Barr, Cytomegalovirus, HHV-6, or any combination of the three.  He then treated them with the appropriate anti-viral therapy for usually 6-12 months, depending on how long they had been sick before coming to see him and of course how quickly their symptoms improved.  Interestingly, he had CFS himself which is what got him interested in it.  He became very sick and had to give up his teaching post at the University, but, he cured himself and now has his practice, is head of the internal medicine dept at the university and does his research.  Recently, Dr. Paul Cheney, a noted CFS researcher, has joined Dr. Lerner in saying that CFS is a form of cardiomyopathy.  Dr. Cheney isn't as sure of it's origins, however, I'm confident in time,that he too, will agree with Dr. Lerner's research.
So...am I better?  I started taking Valcyte the beginning of Feb 2005, by August of 2005, I was feeling better than I had felt in years.  I was able to start exercising again.  I was able to start singing again.  I was doing things I haven't done for years.  And I continue to improve. 
 
The key is finding out what the cause of YOUR CFS is.  Mine is viral, I know that.  And, thank God, I am lucky enough to live about 45 mins from Dr. Lerner's office.  He has a website, if I am allowed to say that here.  It is:  cfsviraltreatment.com  or .org, I can't remember.  Anyway, try them both. 
 
Good Luck!
Musicgirl
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