Have you seen this article?

Discussion in 'Fibromyalgia Main Forum' started by Junegal, Jun 13, 2008.

  1. Junegal

    Junegal New Member

    My friend was getting her hair done and came across this article in Self magazine. She called me and told me it was the story about a girl who was misdiagnoed for years with CFS. She finally found a doctor who ran some new labs and came up with new findings...and gave her her life back.

    Interesting article. If your doctor hasn't tested you, it is something to pursue.

    I went to my doctor 2 weeks ago requesting this test and I came up positive. While I was upset at first, I am glad because it is more hopeful that I can regain a good portion of my life now if they can treat it.

    Not sure if you all saw this but wanted to throw it out there. If it can help even one person it will be worth it...

  2. Junegal

    Junegal New Member

    I bet there are many of us carrying around the CFIDS diagnosis that actually have Lyme. My diagnosis never totally fit (I have done 19 rounds of antibiotics in 1.5 years--I can't get out of bed without antibiotics) I kept hearing I have high EBV numbers but it all didn't add up.

    I was upset too that I wasted 1.5 years of my life trying to "accept" CFIDS and I truly hope the Lyme doctor (I haven't got in yet either, just a positive test) can help me regain my life, even if part of it back. I've tried not to focus on the negative because I need all the fight I have in me to fight the Lyme. By the time I got to the CFS doctor with that diagnosis, I had probably seen 10 doctors. One of them should have tested. The CFS doctor managed me as best she could and was always throwing new medications in there to control my symptoms, but I am not a band-aid type of girl, I want answers and things to be fixed. I am grateful for all the CFS doctor has done for me but at this point I need to move on to an LLMD who can fight the Lyme and see then where I end up.

    I'm glad they did the Today show with the same info from the article. I bet it will help a lot of people to pursue more answers and hopefully get well.

    Good luck with your appointment!
  3. msbsgblue

    msbsgblue Member

    No, that is not me unfortunately. I have FM/CFS, arthritis.
  4. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Maybe one of the problems is that Lyme can be the trigger that causes CFS in predisposed individuals. Just like one of the other viruses or stressors that can trigger the syndrome.

    So a person could conceivably have both.

  5. wld285

    wld285 New Member

    I agree with suthrngirl. I had been diagnosed with CFSsince the 80's. Since finding out I had Lyme, have been trying to learn all I can.

    There are more and more ppl with a cfs and fibro diagnosis finding out they have lyme. Lyme is more of an epidemic than ppl realize. Unfortunately, when it takes yrs before a diagnosis it then becomes chronic lyme. That means treatment takes alot longer.

    I had a 3 mo wait but will be seeing a llmd in aug. and hopefully after all these yrs. will be on the road to recovery.

    Luck to you all,
  6. Junegal

    Junegal New Member

    A person can certainly have both, Lyme and CFS/FM.

    But if someone has Lyme and can treat it, that might give them a portion of their life back. A portion is better than nothing at all.

    I don't think everyone with CFS/FM has Lyme, but I do think there are people walking around with the wrong diagnosis and have been told they'll never get better from their CFS/FM. I certainly hope I am one of those people. I now know I have Lyme (thanks to that article, I was able to pursue testing) and once I get treatment, I'll see if I feel better. If not, I probably do have both. But I can't turn my head to a chance to get better to some degree. I can't imagine anyone would.