Need some help!

Discussion in 'Fibromyalgia Main Forum' started by kaye37, Apr 26, 2010.

  1. kaye37

    kaye37 Member

    Hi, I have CFS undiagnosed. I have been ill for 10 years with the last 3 in constant bladder and pelvic pain. I had a lyme test done by a lyme doctor and Igenex says positive for lyme but inactive now. I have been to a number of doctors as I have a stack of bills on my counter and don't know where to go. I have tried Neurontin, Lyrica and Valtrex and Nortriptyline and now I have become sensitive. Lyrica helped me but I broke out in a shingles rash so I can't take it now. I also have HSV. My problem is that I have a tooth that needs to be pulled as my body has attacked it. The dentist wants to do a bone graft and I will have to take a Z pack to start. Since Macrodantin set this terrible illness off with a sore throat that I had for 6 months I am leary to do this. It was the worst pain I have ever had and then when it went away I was left with the pelvic pain which got worse after I had a cystoscope. I didn't take the Cipro at the time as I seem to react to antibiotics now. I wanted to get my other issues under control before having the tooth pulled but it doesn't look like that is going to happen. The only thing I take right now is Vicodin. I also do not have Fibro as I went to OHSU to find this out. I do have arm pain and tingling. I just want to know if having this tooth pulled will set this stuff off worse than it already is. Thanks
  2. kaye37

    kaye37 Member

    Thank you for your input.
  3. kaye37

    kaye37 Member

    Thank you for the information. I have never had a problem with dental work and I have had plenty, until I got this DD. I have a lot of agitation now. I called the dentist today and since doing the bone graft is so expensive I might just have the tooth pulled and let it go at that. I am going to be 65 and at this point I could care less about having an implant. I am hoping that this tooth has something to do with my pain but I doubt it. I have let this go on for too long.
  4. kaye37

    kaye37 Member

    Thanks for being so helpful. I used to always have dental insurance but I don't now, it's bad enough that it costs me half of my SS check for medical but that will change in a few months when I go on Medicare. I had all my bottom teeth redone with crown lengthening surgery right before I got sick. I don't know if it was a trigger or if it was the desease. Makes me feel hopeless that I will never get to the bottom of it.
  5. Nanie46

    Nanie46 Moderator

    It's hard to say what might happen. You may feel better or you may feel worse.

    I see you are Igenex positive for Lyme. It sounds like your positive bands were IgG because you say "inactive now".

    Actually, you can have a very active Lyme infection and not show IgM bands. There are many reasons why you may not be making IgM antibodies, such as immune dysfunction due to years of illness.

    It is also very possible that you have one or more of the common coinfections found in Lyme patients, such as Babesia, Bartonella and Ehrlichia.

    These coinfections contribute to the severity of the illness and the symptoms noted.

    If you have many symptoms of Borrelia burgdorferi infection (lyme) then it makes sense that you should be reevaluated by a Lyme literate MD...maybe a different one.

    Here is the symptom list on pages 9-11 of this paper...coinfection info/symptoms pages 22-27...

    The bacteria that causes Lyme can invade every organ and tissue in the body, especially the nervous system. It can cause bladder pain.

    You say you react to antibiotics. It is possible that you are herxing when you take them. A worsening of symptoms when taking antibiotics can indicate a die-off of bacteria that in turn release toxins and make you feel worse before feeling better.

    CFS is likely a symptom of a larger infectious picture. Sound like you should be going in the direction of Lyme and coinfections.

    Here is some more info...

    I urge you to also go to's Medical Questions board. There are many people there who were initially diagnosed with CFS before discovering that the cause of their illness is the bacteria borrelia burgdorferi, along with babesia, bartonella, etc.

    All the best to you.
  6. kaye37

    kaye37 Member

    Thank you for the info. I was supposed to have a human growth hormone test up at OHSU but I thought it would make me sick just doing the test. I just took a round of vitamin D as my level was 7. My GP says it's in normal range now. My daughter has much of the same symptoms and my granddaughter lost all her hair a year ago. I feel like I have passed something horrid on to my family. I am or was trying to get in to see an infectious desease doctor but it's been a month and I called them and still no word. Dr. Bryant up at OHSU wouldn't see me either. I guess they think I need a shrink instead. You have to crawl in on all fours to get someone to help you!

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