chronic lyme

Discussion in 'Fibromyalgia Main Forum' started by kasilou, Feb 18, 2006.

  1. kasilou

    kasilou New Member

    Hi,
    Received some replies on FFC question and was very interested in reply from Hopeful4. She said that she was diagnosed with chronic lyme disease. What is that? I had lyme disease back in the early 80's but was never diagnosed until late 80's or early 90's(can't remember)Anyway when I started with all the fibro symptoms I made the comment that I felt similar to when I had Lyme(but worse). Doc said that it couldn't be Lyme. Any info on the Chronic lyme, type of physician seen,treatment, etc. would be appreciated.
    Thanks, Kasilou
  2. kasilou

    kasilou New Member

    Any info on Chronic lyme and Dx would be helpful. What is the diff between Lyme and Chronic Lyme.
    Thanks.
  3. hopeful4

    hopeful4 New Member

    I'm sorry to hear that you are dealing with this, but glad to know that you have some idea about the relationship between your symptoms and the possibility of chronic lyme disease. There is treatment for it, many people recover, but the road can be bumpy.

    I'm the first to say that I'm new at this, and not an expert. Please do some research, and ask a lot of questions.

    If you had lyme disease in the 80's but not diagnosed until years later, then, by the time you were diagnosed and treated, you had chronic lyme. It had been in your body for some time, traveled to different parts of your body, and caused damage.

    A number of things are possible. One is that the treatment you had for lyme did not "cure" you, so the spirochetes were driven into hiding, only to resurface at a later time. Another possibility is that co-infections were present and not treated fully. And another is that perhaps you have been re-infected.

    There are many overlapping symptoms for CFIDS, FM, Lyme, and many other illnesses. You may find some of these lists by searching in the box above, or by googling.

    By what evidence did your doctor say that "it couldn't be lyme"?? What type of doctor is he/she? Many doctors do not have the facts about lyme disease. Case in point...it took me almost 6 years to get the diagnosis!!

    Lyme Disease is a clinical diagnosis, therefore a very knowledgeable doctor is needed. It is best to see a Lyme Literate Medical Doctor (LLMD). You can find one at lymenet dot org. Click on Flash Discussion. Click on Doctors. People do not post doctors names, but will either directly email you, or give you their personal email address. Another idea is to find a lyme support group in your state.

    Treatment is complex. Co-infections must be identified and treated as well. Antibiotics are often used, but used alone will probably not cure chronic lyme. There are different protocols you can read about.

    Strongly suggest googling for Dr. Burrascano's "Advanced Topics in Lyme Disease: Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" September 2005.

    Book: "Healing Lyme" by Stephen Buhner

    Google for WildCondor's Lyme Links, you will find tons of info including Dr. Burrascano's.

    More info lymenet dot org.

    Best wishes on your healing journey.
    Hopeful4



  4. hopeful4

    hopeful4 New Member

    Here's just a quick overview for you, I only pasted in part of this document.


    TREATING CHRONIC LYME DISEASE

    J. J. Burrascano, MD April 24, 2004
    Board Member of International Lyme and Associated Diseases Society
    East End Medical Associates, P.C.
    East Hampton, New York

    TYPES OF LYME DISEASE
    . Early Lyme Disease ("Stage I")
    - At or before the onset of symptoms
    - Can be cured if treated properly
    . Disseminated Lyme ("Stage II")
    - Multiple major body systems affected
    - More difficult to treat
    . Chronic Lyme Disease ("Stage III")
    - Ill for one or more years
    - Serologic tests less reliable
    - Treatment must be more aggressive and of longer duration

    DEFINITION OF CHRONIC LYME
    . Ill for more than one year, regardless of whether treatment has been given
    . Disease changes character
    . Involves immune suppression
    . Less likely to be sero-positive for Lyme
    . More likely to be co-infected
    . More difficult to treat

    CHRONIC LYME DISEASE
    Why are patients more ill?
    . Higher spirochete Load
    . Development of alternate forms
    . Immune suppression and evasion
    . Protective niches
    . Co-infections

    SPIROCHETE LOAD
    . Low Spirochete Load-
    - Inapparent infection
    . Increased Spirochete Load-
    - Symptoms
    - Seropositive

    ALTERNATE MORPHOLOGIC FORMS
    . Spirochete form- has a cell wall
    - Penicillins, cephalosporins, Primaxin, Vanco
    . L-form (spiroplast)- no cell wall
    - Tetracyclines, Erythromycins
    . Cyst?
    - Flagyl (metronidazole), tinidazole
    - Rifampin


    IMMUNE SUPPRESSION BY Borrelia burgdorferi
    . Bb demonstrated to invade and kill cells of the immune system
    . Bb demonstrated to inhibit those immune cells not killed
    . The longer the infection is present, the greater the effect
    . The more spirochetes that are present, the greater the effect

    PROTECTIVE NICHES
    . Within cells
    . Within ligaments and tendons
    . Central nervous system
    . Eye

  5. dontlikeliver

    dontlikeliver New Member

    Those Fibro symptoms, if you know you had Lyme previously as you do, would be chronic Lyme. The symptoms of chronic Lyme are Fibro symptoms if you get my drift.

    Sounds like you know the cause of yours already.
  6. hopeful4

    hopeful4 New Member

  7. dontlikeliver

    dontlikeliver New Member

    www.ilads.org

    It's in the Articles and Presentations section
  8. kellyann

    kellyann New Member

    I have found two wonderful books on lyme disease:
    "Everything You Need To Know About Lyme Disease" by Karen Vandenhoof-Forschner And "Coping With Lyme Disease" by Denise Lang
    Both are very imformative books and should help with any questions you have about Lyme. I found book books on ebay really cheap! You might look there too, haha!
    Take Care!
    Kellyann