Had lyme disease as a child, want info on chronic lyme

Discussion in 'Lyme Disease Archives' started by ScottInCalifornia82, Jul 1, 2007.

  1. ScottInCalifornia82

    ScottInCalifornia82 New Member

    When I was 9 I was diagnosed with lyme disease and apparently successfully treated with antibiotics. I am now 24 and am experiening many symptoms associated with CFS including fatigue, confusion and lighheadedness along with IBS. I've seen about 6 specialists, all of which cannot explain my symptoms.

    I did a lot of reading and collected a lo of reading material on CFS but I know virtually nothing about Lyme disease or chronic Lyme disease. Can anyone recomend a good place to start learning about chronic lyme disease? I strongly prefer to read maerial written by reliable doctors and scientists.

    Thanks.

    Scott
  2. ScottInCalifornia82

    ScottInCalifornia82 New Member

    According to my parents I did not exhibit any unusual symptoms, such as fatigue, directly after my treatment of the Lyme disease. However, I believe many of the symptoms I am experiencing today started a few years after I had Lyme. Does anyone know if my symptoms could still be related to Lyme disease? Any references would be highly appreciated.

    Thanks!

    Scott
  3. mollystwin

    mollystwin New Member

    Your symptoms are most likely due to your lyme disease. Many people were not adequatly treated for their lyme and even if they feel better at the time, will become sick at a later date. This is Chronic lyme disease.

    For more information do a search on Dr. Burrascano who is the leading physician expert on chronic lyme disease. Also google Columbia University Lyme Research Center. It opened in April 2007 and is dedicated to research of chronic lyme disease.

    See if you can find a doctor who is knowledgeable about lyme disease who will give you an igenex western blot to test for lyme. The sooner you get treated, the better off and easier it will be for you.

    Contact your state's lyme association, or lyme net dot org to get more information.

    Good luck!!!
  4. ScottInCalifornia82

    ScottInCalifornia82 New Member

    Thanks for the information and advice. It has become more and more clear to me that finding a doctor who specializes in CFS/Lyme is necessary to get a reliable diagnosis and treatment plan. So far none of the specialists that I've seen have mentioned CFS or chronic Lyme to me, but rather I brought it up to them. The only thing they could offer me was that I should see a psychiatrist.

    I found a good practice in the area (The Holtrof medical group) which specializes in CFS/Lyme and I have an appointment for next week. It will certainly be a relief to see a doctor who will not automatically assume that I'm crazy!

    Scott
  5. mollystwin

    mollystwin New Member

    I went to one of the clinics Dr. Holtrof founded in my state. They are called Fibro and Fatigue Centers and they have centers all over the country. They do treat lyme, but they failed to diagnose me. After spending $12,000 there being treated for CFS, I began to realize that something else was wrong with me. My twin sister had lyme, so I asked for an igenex test. They had already given me a quest western blot which was negative, so they would not give me an ignenex test and said I didn't have lyme disease.

    So I switched doctors, got an ignenex test and lo and behold, I do have lyme disease! I've been in treatment since Feb and feel so much better!!!

    So my advice to you would be to insist on an Ignenex test, not just a quest western blot. Based upon your history, they should do that for you. In the state I live in the FFC doesn't treat lyme appropriatly, but I know of others in different states are getting good treatment. So hopefully this center will know what to do and treat you accordingly.

    And go prepared! Do your lyme disease research before you go. Especially the part about unreliable testing. You could save time an money if you do that first!!


    [This Message was Edited on 07/02/2007]
  6. floyd000

    floyd000 New Member

    Hi Scott,

    I would recommend finding a Lyme Doc as well as someone who treats chronic fatigue and related issues. I am seeing a Lyme literate doctor but he really doesn't know much about chronic fatigue which I find a bit bothersome. For example, many of my symptoms I believe to be related to Lyme such as high mercury levels, low magnesium etc he sees as separate issues rather than the effects of Lyme or chronic fatigue.

    Andrew
  7. victoria

    victoria New Member

    I posted to your post on the CF/FM board, will repeat it here... I agree with the advice about educating yourself about Lyme...

    IGenex Lab only became 'controversial' when the NY Times ran an article questioning it... but it is fully certified just as any other lab like Quest. They just happen to do the Western Blot the best, altho reliability is only about 70%. That's why even the CDC says a patient should be treated based on the 'clinical picture', ie, symptoms.

    "Chronic Lyme' vs 'post-Lyme autoimmune disease' has become a very highly controversial/politicized debate. The IDSA (Infectious Disease Soc. of America) and now the Neurological Soc. has come out saying that 28 days, possibly 60 days, of antibiotics is ALL that's needed, ever, and if symptoms persist it becomes a mysterious autoimmune disease. Thus insurance companies are using these 'guidelines' to deny anything more than that.

    However, the Conn. Att'y Gen'l has filed initial papers regarding an anti-trust suit so that he can look at their papers. As you know, it seems few doctors these days don't consult with drug or insurance companies. Hmmmm.

    Actually what is really interesting is that these doctors who are speaking out against 'chronic lyme' were publishing papers in support of it 15 years ago. They've basically 'cherry-picked' what studies backed up the position they now want to support, ignoring the vast number of studies that show otherwise.

    There's a Lyme board here (look under 'message boards' up above); also I strongly suggest ilads.org as they have a lot of info and links as well. And in the reference library here (look up above again) under CF/FM there are papers about it.

    While I've not been tested, my son got all my symptoms of CFIDS and then rapidly FM by the time he was 16-17; after all his regular blood tests were 'normal' and his internist had no idea of where to send him altho it was agreed there was something wrong as his pulse was 48 and his BP below normal etc...

    I took him to the closest 'Lyme-Literate MD' (LLMD); he was positive on the Western Blot even according to the CDC's 'surveillance standards'. He's now about 75% better after 26 months of oral antibiotics. His doctor figures it will likely be another 2 years. He is turning 20 this summer.

    Our best guess is that symptoms have been around since he was 12, altho he never had a rash or anything obvious like bell's palsy. Co-infections are more the rule than exceptions; it is suspected he also has bartonella and babesia, due to sweats and neuro symptoms, but unfortunately tests are extremely unreliable for these.

    Many doctors willing to treat patients with long-term antibiotics are being persecuted, including my son's doctor; he is having to move to another state in order to practice, even tho he was recognized by the state of NC in the 1980s for his pioneering work with HIV/AIDS! Many NE states have passed laws requiring insurance companies to pay for long-term antibiotics for Lyme despite the controversy, by the way, that is how bad it's gotten.

    Also, as you might know, Lyme can go inside one's cells, even the white blood cells, can cross the barrier into your brain, can form cysts that helps it hide from antibiotics in the blood stream...

    all of this are good reasons why it may not show up in your bloodstream on a blood test, but doesn't mean it isn't wreaking havoc within your body.

    Good luck, I hope you get tested, AND hope you find a really good LLMD who is willing to treat based on your clinical picture rather than test results alone...


    All the best,
    Victoria
  8. floyd000

    floyd000 New Member

    Yes you are lucky. At about the same time my health was deteriorating I had 3 cracked amalgams that needed to be replaced. I was aware enough to have all replaced with composites but it certainly wasn't done by a dentist sensitive to mercury exposure. I am sure this hasn't helped my situation.

    As I stated above, my biggest advice to someone starting down this awful path is to find someone that is sensitive to all the issues surrounding CFS.

    One of the awful things about this is that affects so many different parts of the body and most docs these days are so specialized that they seem unable to deal with symptoms or diseases outside their specialty.

    I actually saw a top CFS researcher but didn't get much help from him. He seemed to be more interested in the research and not so much the treatment.

    Andrew
  9. victoria

    victoria New Member

    Just wondering if you could give us an update at all...

    Hope you're improving!

    all the best,
    Victoria

  10. mrdad

    mrdad New Member

    Have your noticed that Scott's Post was made in July 2007??
    I don't know what is happening here? Things like this have happened b-4. I'm really frightened!! Too close to Halloween
    to be witnessing things like this. Ya know what I'm sayin?

    Huggles,
    MRDAD
    [This Message was Edited on 10/10/2008]
  11. kellyann

    kellyann New Member

    Hi all,

    I am so sorry some of you had bad luck at some of the Fibro and Fatigue Centers. I know the one I go to in Atlanta is very good. Dr. Bullinton is wonderful, kind, and compassionate. She is a very smart cookie too! She is the one who diagnosed me with lyme. And I sure was not expecting it.

    Kellyann