Are there many with CFS/Fibro/Epstein-Barr?

Discussion in 'Fibromyalgia Main Forum' started by michellemariewalls, Jul 1, 2009.

  1. michellemariewalls

    michellemariewalls New Member

    I do and was just curious. It is a bad combo to have.
  2. bunnyfluff

    bunnyfluff Member

    and I wanted to tell you I 'had' all of those things. I say 'had', because technically what was actually wrong is that I had undiagnosed Lyme disease for at least a decade, causing all of that misery.

    I never saw the tick, or had the rash. This is NOT UNCOMMON.

    Mosquitoes can also spread lyme.

    I just couldn't understand what was wreaking havoc on my immune system.

    It took the insistance of someone else that had Lyme to get me to go back and get *properly* tested- I had tested negative prior and thought that meant I did not have it.

    I have since been tested with Igenex and another test which both were positive for Lyme and mycoplasma fermentens.

    You an download some exellent info here:

    It was not until I understood that the immune system is like a teeter-totter that I got down to the nitty gritty of what was *really* wrong.

    The EBV is the by-product of an immune system under attack which allows virus's that other's can keep in check, but allows our immune system to let it 'come thru' so to speak.

    I had active EBV with incredibly high numbers (over 2500) for a year and a half.

    It is very common for people with Lyme to have high EBV titers.

    I want to tell you that I am much better now, after almost 2 years in treatment, but until you find out what the *real* issue is, you are just throwing stones at it.

    Many here have found Lyme, it's co-infections, or mycoplasmas to be the culprit.

    Sorry you feel badly, and I hope you can discover the source of your misery. The testing is a must.

  3. michellemariewalls

    michellemariewalls New Member

    I had no idea that mosquitos carry lyme. I luckily do not venture outside at all except to walk to my car. But it only takes one bite. what kind of treatment did they do for you? Thank you for the reply and advice. Michelle
  4. ladybugmandy

    ladybugmandy Member

    michelle..have you tried antivirals?

    i am not a good person to give antiviral advice since i am still very sick, but i have heard of quite a few people improving and even recovering with antivirals. if you have EBV alone, valtrex is used. if you have HHV6 and/or CMV, valcyte is used as well.

    best of luck
  5. michellemariewalls

    michellemariewalls New Member

    Hi Sue-
    yes, I have tried both. I do have EBV w/ HHV-6 and CMV. It was very tough for me to take those. They seemed to really drain me of what little energy I had and after many months on them, had no effect..... I will keep searching for relief. Thank you so much for your reply.
  6. Engel

    Engel New Member

    Isn't Epstein Barr CFS? I get really confused on this stuff ... fibro fog!
  7. jasminetee

    jasminetee Member

    I came down with Chronic EBV in the 80s and developed severe FMS in 2000. It is awful having both.

    Engel- some folks seem to get CFS after getting EBV but others with CFS test negative for EBV and seem to have had either other viruses or it came on slowly and they don't know why.

  8. bunnyfluff

    bunnyfluff Member

    Lyme can lie dormant for decades- that's the part that is really crummy. Hard to tell where I picked it up, that is the case for lot of folks.

    I did anti-virals for quite awhile before the lyme test to no avail. I have been mostly doing Abx for the lyme, but also treating low thyroid and drained adrenals. Lyme likes to invade both, as well as large joints.

    You know- it was one reason originally when I saw a rheumy 10 yrs ago I was so sure it was not Fibro- my knees dodn't hurt just on the sides- they hurt and locked up deep inside- if that makes sense..... if I ride in the car for 20 mins, for example, I can hardly stand up to get out my knees are so stiff. It wasn't a 'tender point'. It was like the diagnosis didn't quite fit, but I was being lumped in.

    Also, my hands hurt so much in the large joints I was sure it was RA..... I was already having late life onset of Celiac's so I figured auto-immune, right? WRONG! The lyme had attacked my intestines, but no one put it together at the time.

    How far are you from Kyle, TX? The Texas Lyme Disease Association headquaters is there.

    Anyway- please get checked for the mycoplasmas, as well. They really wreak havoc on the immune system as well. Mikie, who has been on this board for a long time has mycoplasma infection as well, and can share some good info with you if you find out that is your culprit.

    Just don't give up! Your answer will be there if you just keep pushing and questioning.

    I hope you get to feeling better!
  9. michellemariewalls

    michellemariewalls New Member

    I too have Celiac's ! I just found a new infectious disease doctor yesterday but had to have all new bloodwork done. I am not sure where Kyle, Texas is but I live in Spring, close to The Woodlands. Thank you so much for your advice.... michelle