Just got checked positive for chronic fatigue syndrome

Discussion in 'Fibromyalgia Main Forum' started by poopedout, Jan 29, 2006.

  1. poopedout

    poopedout New Member

    Hi,,,i just recently got checked positive for this chronic fatigue syndrome,,epstein barr disease...I had it for so long,,and now i know what it is...Its just so new to me,,what should i do,,anything special i should be taking...my doctor gave me soma tabs,,but they don't seem to work...after a couple hours on my feet,,i am so tired,,i can't even stand up...i don't sleep at night...I am so tired and all my joints are killing me...my neck is constantly swollen...i need advice on how to cope with this.
  2. Banka8

    Banka8 New Member

    Hi Pooped,

    I love that name but of course hate being pooped and I'm sorry that you have CFS. I've had it for 19 years.

    I am on the Marshall Protocol. It is working for me and many others. Do a search of this site and you will see postings about it. It is important to note that the Marshall Protocol is not about using supplements which in my opinion will not bring about a cure or anything close to it.

    The Marshall Protocol uses FDA approved medications used in a unique way. There is alot of imformation on the Marshall Protocol website. You can read the progress of the members on a daily basis and ask questions there.

    I've been on the complete Marshall Protocol now for six months and my symptoms are clearing up gradually.

    Come to the website and decide if the MP is right for you.

    I think there is a article by Dr. Trevor Marshall on this website. He also has a peer reviewed paper in Pubmed you might want to read.

    Take care and I hope you feel better soon.

    Judy
  3. jarjar

    jarjar New Member

    I was diagnosed with CFS with Epstein Bar titers back in 1988 also...I suggest you test for Lyme and mycoplasma infections. Be sure you find a Lyme Literate M.D. This could save you years of trying to get well.

    Good Luck!
  4. poopedout

    poopedout New Member

    Thanks alot for your message...i will definely check all those sites out...it would be great to get a good night's sleep...and also its good to have this kind of feedback from everyone..no one in my family thinks i am feeling sick,,,its like its in your head.
  5. pamsue

    pamsue New Member

    Hi poopedout, I like your name too, lol

    I have a couple questions I am sortof new so please forgive me.

    My doctor thinks I may have CFS along with my FM. I thought that epstein barr was different from CFS though because he says I am negative for epstein barr

    Is it possible that I could still have CFS?

    Thanks so much

    Sorry about all your pain it is very tough to deal with these illnesses

    pamsue
  6. zerped

    zerped New Member

    Reading your post just now brought back something I haven't thought about in the four years that I've been dealing with CFIDS. In 1982 I had a REALLY bad case of Epstein-Barr Virus. I was jaundiced and my liver was so week I had to get by on juice mixed with protein powder for a week or more. Once I eventually did get better, my doctor told me that I couldn't get it again, but if I got sick, it would probably trigger a much milder version of the Epstien-Barr.

    Now I can use this to describe to others what's going on with me now. If anyone's had "mono" and they imagine that fatigue never going away, they can get a handle on what this is like for us.

    Like others have said, find out as much as you can, and try everything! You'll find some things that others do here will help you also, and there will be things that are either costly or uncomfortable that don't work worth a hoot. Like the song says, "Take what you need and leave the rest."

  7. pamsue

    pamsue New Member

    Hi Cindylu thank you for your explanation. This helps me.

    I am so confused with all the different symptoms and diagnoses or non diagnosis.

    Thank you
    pamsue
  8. Angel6801

    Angel6801 New Member

    Sometimes mono and ebv can be related... When I told my new dr that my blood test showed positive for EBV. He asked when I had mono.. He said that many times they are related... My other dr said I do have CFS but... The kind of symptoms you guys explain do not fit CFS. He also explained that sometimes EBV positive can just to build up as antibotic to prevent from having mono again... But in your case, it did sound like you do have CFS. My cousin has EBV and gets so tired like you do. But now she is doing fine. SHe had to exercises, watch what she eats. I am not sure how she did it.

    I hope that... YOu will find a way. Sorry that I can't help much. I am not sure how to treat or give you advice so you will not be soo tired all the times.

    Take care
  9. poopedout

    poopedout New Member

    hi,, i am also confused too,,,is chronic fatique also ephstein bar? i can't seem to get any answers about this one...can anyone out there help me? I to am like that,,after grocery shopping or anything being on my feet for 4 or more hours,,i am totally drained,,i come home i can't even stand up,,,then i am getting such bad lower back pain,,is that also part of this? my right arm albow is so sore, i can't even bend it,,so is my right knee.. I also need tons of advice on how to cope...
  10. hopeliveshere

    hopeliveshere New Member

    I am not sure about what you mean by this:

    "Now, some respond to Dr. Marshall's protocal, but Drs Paul Cheney and Bell say our heart dysfunction (systolic cardiomyopathy) do not do well on this Marshall protocol, so you need to do lots of research here and elsewhere."

    I am researching the marshall protocol please tell me more about what you said above.

    Jeanninehope
  11. hopeliveshere

    hopeliveshere New Member

    I am looking to get in contact with Banka8....Can anyone tell me how to reach her? I have tried to find her on the marshall protocol website. I would love to chat with her about the MP....

    BANKA8 ...Please contact me...You can ask Mikie for my email addy....

    Thanks,
    Jeannine