Help with questions about EBV and CFS

[lvfrogs]

Hello all,
Very long story here about going to doctors for about 3 years and not getting any answers. Finally, got one answer and that was that I have chronic EBV and they think CFS.  My question to anyone who can help is this, where do I go from here? I haven't found a doctor yet that can help.  Also, I believe that my other symptoms are indicative of hypothroidism and think there is a link. Any help on that also. It has been a long 3 years of trying to get answers and no one listening. I am very depressed about it all because I just want to feel better. I also have some gyno issues going on and need a hysterectomy. It is sometimes overwhelming. I found this through being on the ovarian cyst/ovarian cancer forums and I did read some posts that were informative. Thank you for that.  If anyone can help, thank you!
Colleen

[lvfrogs]

Hello PlateletGal,
I will consider joining that forum as well. It has been very hard for me to be on the computer lately, just busy with work and the kids. I am so grateful for your knowledge and those of others and all the advice/links that you share. It will be invaluable, I am sure.  
I am just starting this journey and am still somewhat overwhelmed and at a loss but I will be up to speed soon!
Thank you for everything!
Colleen

[PlateletGal]

I hope that you will stick around and consider joining MedHelp's fibro/CFS board (I am one of the Community Leaders in the forum). We keep our members up to date on the latest research and treatment options. Many CFS patients are (in my opinion) not diagnosed yet and/or getting proper treatment. So it is good to keep track of the latest research and also.... get the support you need from people who share your diagnosis. We have a great bunch in the forum !

You may want to consider googling, "The CFIDS Association of America". This wonderful organization has been fighting for us and getting us the government funding that we need. The more members they have.... the more power they have in Washington and the more funding we will get to fight this complicated disease.

[lvfrogs]

Thank you for responding. You are a wealth of information. I do appreciate it. I already went to the doctor site and found a doctor in my area who treats CFS. I don't know yet if he is on my insurance, but will be checking. I just recently changed insurance so have to see my primary for referrals first. It is almost like starting over.  I will start reading and researching because I want to feel better! Thank you!!

[PlateletGal]

Hi ! I'm glad you are here. Being diagnosed with "Chronic Fatigue Syndrome" can be a big pill to swallow, but I can tell you that this disease is very real and very similiar to lyme disease and autoimmune conditions. And like people who have autoimmune diseases, two-thirds of CFS patients have bacterial infections ! The regular labs do not test for the type of mycoplama we have (there are various species), so if you have CFS... it is crucial to do your research on this often disabling condition.

Here are some links that you might be interested in. I hope that you will stick around.  There are more people with CFS in this country than MS and 80% of them are still undiagnosed. = (

http://www.immed.org/ ---- click on "fatigue illness research".  "clinical testing" and "treatment considerations".

Health Pages on CFS:

http://www.medhelp.org/health_pages/list?cid=39

Treatments for CFS:

http://www.medhelp.org/health_pages/Fibromyalgia/Treatments-for-Chronic-Fatigue-Syndrome/show/453?cid=39

Antiviral Treatments for CFS:

http://www.medhelp.org/posts/show/724564

Physicians Who Deserve Our Attention --- I included a few of the experts on CFS.. those who successfully treated their own disease.

http://www.medhelp.org/user_journals/show/44526?personal_page_id=1064