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Hi Sue - What about slowly worsening symptoms over decades with this disease and any experience with low HGH and treatment?


Posted by zanzabi

I've had CFS or something since the early 90"s.  At that time I was tested for EBV, Lupus, MS and finally told I had sysemic candidiasis.  Years creep by with constantly feeling like I'm swimming up stream and losing ground.  finally diagnoses a low cortisol and went the naturopathic route.  In 2003, I think, I finally took 6 weeks off and wentof by myself and just read and slept and meditated.  Since then I've gone through a relationship break up and a major job change with a schedule now of 4 ten hour days ( impossible)  2 years I ago I mde my first visit to a hospital becasue they thought I had had a stoke or seizure - very mild.  They ended up discharging with the diagnosis of haveing had a "spell."  (how victorian of me!)  Since then my fatigue and depression have been worsening slowly but steadily.  Now I've been diagnosed as having low thyroid, low cortisol and low HGH by and Endcrinologist.  It feels as if this disease is almost opportunisticalllly progressive.  Do theres expreience worsening over the years - Of course I'm 60 - but life is pretty limited to my job and resting.  They're working on putting me on HGH - but I'm a bit leary.  Lots of things seem to work for a while and then fail.
 
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Dear Zanzabi -

 

I'm sorry to hear you've had such a difficult time lately and that your CFS seems to be getting worse.   In some people, CFS does tend to get progressively worse, but the latest research suggests that if you're getting worse, it may be due to underlying infections that have been left untreated.  have you ever been tested for Lyme disease and its co-infections?  Lots of people have been misdiagnosed with CFS when they actually had Lyme - the symptoms are very similar.  If you have any joint pain and/or severe cognitive dysfunction that has worsened over time, then you should definitely be tested for Lyme.  here are a couple of blog posts I wrote about CFS and Lyme and Lyme testing:

http://livewithcfs.blogspot.com/2008/09/lyme-disease-cfs.html

http://livewithcfs.blogspot.com/2009/03/cfs-and-lyme.html 

(My case is less typical - Lyme was ruled out for me when I first got ill.  I had CFS for 7 years and just recently got Lyme disease).

You should also be tested for common viruses that are known to reactivate in people with CFS, including EBV, HHV-6, and CMV.  if you test positive for any of these, you can be treated with antivirals which should stop the progressive worsening (though the antivirals will make you feel worse at first before you improve).  Here's some information on viruses and CFS:

http://www.davidsbell.com/LynNewsV3N1.htm

http://www.vicd.info/index.html

As for treatment with HGH, I've heard of it but have no personal experience with it.  It is well-known that CFS messes up the entire endocrine system.  Are you being treated for the hypothryroidism?  That often helps a lot. Treatment with cortisol is controversial - some think it helps; others think it doesn't help and may even be harmful.

 

Here's what I could find on HGH:

Several forum discussions between people on HGH:

http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1350563

http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1339689

Also, this CFS clinic uses HGH and has an article about it:

http://www.hormoneandlongevitycenter.com/growthhormone/

If you need help finding a knowledgable CFS doctor who can run the virus tests and also look at other potential treatments for you, here are two good databases:

http://www.co-cure.org/Good-Doc.htm

http://www.chronicfatiguetreatments.com/wordpress/treatments/chronic-fatigue-doctors/

I hope this information helps and you are able to finally get some relief -

 

Sue Jackson

www.livewithcfs.blogspot.com 

 

 

NOTICE: The information provided on this site is not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on Wellsphere. If you have a medical emergency, call your doctor or 911 immediately.
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