Co-Infections of Lyme Found In Me! You may want to be tested

Discussion in 'Fibromyalgia Main Forum' started by HppeandMe, Jan 17, 2006.

  1. HppeandMe

    HppeandMe New Member

    Hi Friends-

    I thought from the beginning of time that I had Lyme. In fact, about a week after my exposure to ticks. I had many Lyme tests come back negative and one come back equivalent. I was diagnosed by a rheumatologist over 2 years ago with Fibromyalgia and a well known Fatigue doctor with CFID's a year and a half ago. I still pursued Lyme because it just seemed so cooincedental. I went to a horrible LLMD in PA who only tested me for Lyme, I also went to another doctor who seemed mighty nice and thought I might have Lyme but he did not test for that he tested for another co-infection. I also had many other Lyme tests done by doctors. Then I decided to pursue one last LLMD who was referred to me by another doctor who was no longer taking patients. This doctor tested me for every co-infection available not just Lyme. I went to get the results today and come to find out I have 3 of the co-infections! I have Bartonella, Babsiosis, and Human Ehrlichiosis. Why didn't any other doctors run these tests on me. Why did it take me to get to this point or this wonderful doctor before these tests were run. I asked the doctor and she said most docs only check for basic Lyme however, the LLMD should have known better. There have been known deaths for 2 of the co-infections. Why am I telling you all of this? Demand, if you have any thought what so ever that you have Lyme disease to be tested for all of the co-infections known. I feel like if I had been tested almost immediately I would not be as sick as I am today. I am in the process of now losing my career, home & husband and it could have very well been avoided. They now consider it to be late stage and I will hopefully begin IV antibiotics in a few weeks with my insurance companies permission. You see most insurance companies won't approve the IV antibiotics unless your Lyme comes back positive but this doctor is going to fight for me since I am so ill. In fact, she very well believes that I also have the basic Lyme disease as well but my immune system is so weak she doesn't believe that it can even bring up enough antibodies to show it. This doctor was even able to show me that I had EBV in the past. Because it has been so long I may very well I have the Chronic Fatigue as well and will have to live with that.

    I just hope that maybe someone can be helped faster by reading my story and not have to endure what I have indured the past two and a half years.

    My symptoms at the start came on sudden and were upper back pain, twitching in the legs, twitching of the eye, lower spinal pain. As time passed I became extremely fatigued, malaised, I had sweats and was bedridden at times. As more time passed, I was unable to sleep without really heavy sedating medication and when I wake up I am still tired but could not go back to sleep. I just have to stay awake most days exhausted or take Dexedrine for energy. I frequently mispronounce words, my memory is very bad, and that started last year. I have even at times felt like I was going crazy. I've also lost a great deal of weight and have very little appetite. The majority of the weight was lost within the past year. Before becoming ill I was 170, I am now 132. I just dropped an additional 12 pounds from the last time I was at the doctor, last month. Just like CFID's & Fibromyalgia some people gain and some lose.

    Anyway, I know this has been a long article and I hope this helps at least one of you. You are so important! Don't wait to get to the state where I am. Get help now!!

    Love,
    Hope
  2. meowchowchow

    meowchowchow New Member

    Hope - I'm so sorry to hear you're so ill but am glad you found the reason and a dr. to help you!

    I go to the FFC in Atl. and was just tested TODAY for LYme and the 3 co-infections you mentioned. See my post titled "3rd Visit to FFC today".

    Good luck to you and please keep us posted!

    Meow
  3. HppeandMe

    HppeandMe New Member

    Thanks Meow and good luck!

    I realized because the symptoms seem to come and go that I also suffered for a while with the feeling of having carpel tunnel. I think I mentioned the tingling and sometimes numbness of the fingers and toes. By the way, the doctor also told me that heel pain and tenderness or nodules down the sides of your thigh(s) are also symptoms of Lyme and coinfections. I have had that too. Just a few symptoms I forgot.
  4. CANSADO

    CANSADO Member

    Hi Hope,

    At least you now have some answers about your illness. Could you tell me what labs your latest LLMD used for the coinfections diagnoses?

    Thanks
  5. Countrymom

    Countrymom New Member

    Make sure you register over at lymenetdotorg.

    There are quite a few of us over there from this board whom have lyme and coinfections.

    I'm glad that you have a diagnosis and good luck

    Dani
  6. HppeandMe

    HppeandMe New Member

    Hi Cansido & Countrymom-

    Cansido- My co-infections came back positive from Igenex. My Lyme test from Igenex has come back negative. I was actually exposed to ticks a week before I became ill and had wondered why my tests were coming back negative for Lyme. It was because no one had checked for the coinfections.

    Countrymom- Thanks for the information I will definately do so! :)
  7. laspis1

    laspis1 New Member

    My lyme test have come back inconclusive a number of times, however I did have ehrlichiosis like hope. It was identified a month after I cam down crashing with symptoms I never new had a name. Unfortunately I was not treated. At the same time I was diagnosed with parvovirus and the Infectious Disease specialist felt that my ehrlichiosis was 6 months old and that what was making me so sick was the virus and since there is nothing you can do for a virus, they did nothing and I stayed in bed for months. I was treated with antibiotics a year later by another doctor. I still have ehrlichia antibodies. In retrospective I was too sick to fight and I cannot believe I was not on antibiotics immediately.

    One more thing, for those of you that will ever test positive with lyme and get treated, the treatment is the same, it is the same antibiotic.. This is why I think sometimes they do not bother testing for everything. However, if lyme comes back negative, but you know you have symptoms or know you have been bitten by a tick, you should insist to be tested for other tick born infections, like erlichisis. Come to find out, this one can be deadly. Hope this makes sense.