Expert: Candy - 4/24/2005

Question
Hello Candy,

I read your "expertise" description and wanted to ask you some questions.  I was considering being an AllExperts.com volunteer in the field of Alternative Medicine since I have also had CFS for many years and have had my battles with doctors, as I'm sure you have too.  I was forced to strike out on my own in an attempt to find out what was wrong with me since I couldn't find a doctor who was interested in treating anything but the symptoms on the surface.  Very frustrating, as I'm sure you know.  

Anyway, I was wondering what types of symptoms you are/were experiencing?  And what have you done so far to help you start getting better ?  

Also, have you read anything, or heard anything that suggests that CFS or any of the closely related "syndromes" may be caused by yeast fungus?  Or specifically Candida ?  In my research I have ran across this repeatedly, but it is hard to find people who believe it...especially doctors !

I'm very interested in what you've been through, and still going through, because I am still fighting it myself.   I have learned a lot over the last several years, and mostly what I've learned is that it's VERY hard to find a doctor to diagnose CFS, let alone treat it.  And that goes for all the related conditions that usually go along with it.  

If you have time I would love to hear your story.  

Thanks.  

Answer
I'm sorry that it has taken me so long to respond to your question, but as you know, we have our good days and bad and I find the change of seasons brings on more bad than good.

When I was younger, I was what they refer to as a Type “A” personality (an overachiever and workaholic).  This combined with the fact that I had been exposed to Mononucleosis when I was a teenager, attributed greatly to my becoming ill in later years.

I started experiencing symptoms in 1992.  At first they were just little annoyances.  I would tire easily while doing things I had done with no effort for years.  I became forgetful, forgetting things I knew I knew and especially forgetting things someone would have told me only moments before.  These symptoms became more severe as time moved on.  

I contracted a severe kidney infection that landed me in the hospital for a week.  I never returned to full health afterwards.  After a few weeks of still not feeling “up to par”, my doctor at the time, became concerned and started running tests.  I was poked and prodded, x-rayed and viewed and, yet, he was unable to find anything to explain why I was so severely fatigued and had lost 20 lbs. in a 2 week period of time.  I'm not sure why he chose to run an Epstein Barr blood test on me, because after the results came back positive, he admitted knowing very little about the illness.

So, to not only help him to help me, but to better understand my own illness, I began doing extensive research on the subject of Chronic Fatigue Immune Dysfunction Syndrome.  Unfortunately, that particular doctor ended up selling his practice not long after my diagnosis and the doctor who replaced him informed me that he did not believe CFIDS was a legitimate illness.  So, I left him.

I started seeing a county clinic doctor and got lucky.  He not only believed in CFIDS, but had several CFIDS patients and knew how to treat their symptoms (since you can't treat the illness itself).  He assisted me in applying for my Social Security Disability.

That was an ordeal.  I was turned down twice and actually had to go through an appeals hearing. It took me 1 ˝ years to get to that point and by that time my symptoms had increased and I started experiencing grand mal seizures.

During that time I started a CFIDS support group in my community, which led to me receiving a newsletter from the National CFIDS Association with an article about a lawyer who had actually got a Supreme Court Judge's denial over turned (and once a Supreme Court Judge says, “no”, it's supposed to be final).  So I called him.  He was surprisingly willing to take my case and, thankfully, won my appeal.

Since then I have had to change doctors 3 times.  I am still on disability.  I now have asthma on top of everything else.  

As for what we, my current doctor and I, are doing to help me?  My doctor has me on the usual asthma medications, Depakote for the seizures (they are called Non-epileptic seizures), iron and B12 shots once a month and Naprosin for pain.  I take several vitamins, herbal and mineral supplements that seem to help my energy level and memory.  I try my best to avoid stress, have learned to control negative emotions (anger, sadness, etc) because they use up so much energy and I need every bit I have.  

I have been in “remission” for 1 year this time (was in remission 1 other time that lasted almost 2 years).  I have learned to not let myself get frustrated on the days I can't get out of bed and things don't get done and I've learned to not try and make up for those days on the days I can get out of bed, otherwise I wear myself out too much.  

I hope this helps to answer your questions.  Feel free to ask me any further questions you might have.  I wish you the best of luck.

P.S.  Yes, a CFIDS patient can get more yeast infections.