my fibromyalgia is really Lyme

Discussion in 'Fibromyalgia Main Forum' started by mesmall, Apr 17, 2006.

  1. mesmall

    mesmall New Member

    After going from Dr. to Dr. with my symptoms of brain fog,memory loss,muscle twithching,sleep problems,anxiety,muscle aches and cramps,I've finally been diagnosed with Lyme.My tests are negative as many others are,but there are over a hundred different strains of lyme and coinfections that there are no tests for.Lyme is a clinical diagnosis and very few Lyme specialists are actually Lyme literate.I have been taking antibiotics for 6 months now and most of my symptoms are gone,except for twithching,and aches and pains here and there. I actually put myself on Doxycycline to see if anything would happen(usually you get worse,which is a sign that things are dying,)the aches and pains started getting better and the brain fog lifted.It took me 3 months before I could see a lyme expert,so I begged some from the vet!!He treats lyme often for several months and tried to help.
    I would like to suggest to you to get tested through Igenex labs,and find a Lyme literate Dr. to rule Lyme out.You have nothing to lose.Most people don't remember ever getting bit by a tick.In my case I was bit by a tick,started doxy for 4 days and was told by my Dr. the test was negative so I discontinued the meds.This happened 3 years ago.A year later my symptoms started.
    I read these boards many times when I thought I had fibro,and needed to share this info with you all.The symptoms are similiar. I wish you all well!

    Mesmall
  2. sydneysider

    sydneysider Member

    Thanks for posting.

    I'm wondering if any of your symptoms were different from those of FM. Is there anything (apart from puting yourself on doxycycline) that tipped you off that you might have Lyme, and not FM?

    Hope you get full recovery.
    Robyn
  3. mesmall

    mesmall New Member

    Sydneysider,
    What tipped me off was I met a customer(Angel?)at work.I don't know how the subject of fibromyalgia came up,but I told him about my ordeal.I told him about the pains(knee,shoulder,neck,leg cramps,memory loss,brain fog,anxiety attacks etc.and he said "YOU"VE GOT LYME!" His wife was in a wheelchair diagnosed with MS for 3 years before they found a REAL lyme expert in New York who diagnose her with lyme.This man has been a part of a large support group of lyme patients,most of whom were diagnosed with fibro and cfs.The fibro and cfs is a symptom of lyme.The good news is that lyme is treatable.It is a long process and can take years of antibiotics,but recovery is very possible. I went over to the Lyme message board and found people just like me(and you) with the same symptoms.I contacted a person from my local lyme support group and told her about my symptoms and going from Dr. to Dr. She had the same story! She told me to get my hands on antibiotics wherever i could until I could get in to see the Lyme Dr.(The REAL expert,I saw 2 others who said I had nothing!)She suggested I ask the vet as their very knowledgeable about Lyme and may help,or order online.If you get worse or better it's doing something.If you stay the same,at least you tried.It took about 10 days before I had chills and shakes (herx).I'd have a few good days and then a bad one.Eventually I had more good days.The neck,knee and shoulder pain disappeared.I told my Dr. about my progress and he gave me 3 weeks of doxy,and said "THAT"S IT".He's one of those Dr.'s that doesn't believe in longterm antibiotics.Funny though,I brought my teenager to the dermatologist for acne,and he prescribed Doxycycline 2x dailey for the rest of his adolescent years!!!GO FIGURE???
    It wouldn't hurt to look at the lyme boards and see who the real lyme experts are and see if your symptoms are similar to many lyme people.Did you know that there are 90 different symptoms of Lyme????
    I'm not saying that everyone here has lyme,but I have a feeling many do and were like me,misdiagnosed and ignored for 2 years while the lyme multiplied.If I believed the Rheummy,I'd be taking antidepressants right now,thinking I was having a bad fibro day! I absolutely knew it was lyme when someone posted about their eye twitching,and how only 1 antibiotic stopped it.I had a nerve under my right eye twitching for 3 months!When I put myself on Doxy,it went away after 1 month.Then I knew it was bacterial!!!When I finally got to the real lyme expert,he diagnosed me with "classic late stage neuro Lyme" I burst out crying I was so releived.He told me it could be a long process trying to kill it,but I WILL get well.I'm actually lucky,I only had it in my system for 2 years,many people have had it for 10 or more years.The reason many really sick lyme patient are diagnosed with mS is because both diseases cause the exact same scarring on the white matter of the brain as seen on an MRI.To the untrained eye,it looks like ms,and is treated as such,leaving the lyme to grow and worsening the symptoms as many lyme patients report.Lyme loves the central nervouse system.
    I simply could not forget about the fibro people here.If 1 person is helped from this info,it's worth it.If someone hadn't told me,I would have never known and not gotten my life back!
  4. Countrymom

    Countrymom New Member

    Mine too, I have been in treatment for the lyme only since December, so I have a long way to go, I also have hypercoagulation, Ebstein Barr, and a couple other chronic infections so I am pretty messed up.

    I hate that I have lyme but at least is a step forward and knowing what to treat instead of "you have fibromyalgia, take a sleeping pill and get some exercise!"

    Good luck,
    Dani
  5. toronto133

    toronto133 New Member

    I also went through an FMS diagnosis before testing positive for Lyme.

    8 months of antibiotics has gotten me about 80% better and now that I have found a doctor that treats Lyme, I expect to recover fully.

    It completely amazes me that "the system" lets people languish in a disabled state for want of some readily available medication.


    Denise