Lyme Disease (new/additional diagnosis) ... Help

Discussion in 'Fibromyalgia Main Forum' started by balletdancer74, Nov 29, 2006.

  1. balletdancer74

    balletdancer74 New Member

    Hi Everyone,

    I usually do a lot of research on my own, but I'm in a bit of a CFIDS/M.E. relapse (no FM flare for once! lol), and I was literally just diagnosed with Lyme (Band 41 KD - IGG). I've NEVER been bitten by a tick even though I'm from CT (tick central!). I learned from a young age how to avoid exposure and what to look for, etc.

    Anyway, I always came out "borderline" for Lyme since I became full blown sick seven years (yes, everything started years earlier) ago, but now I'm suddenly testing positive for this particluar band (41 KD) which could explain my relapse (haven't had one like this in years), sudden hot/cold flashes again, worsened sleep (going for a sleep test next week), never improved anemia (had since childhood - always iron and sometimes B12 as well), worsened joint pain (mostly shoulders - had bursitis which has changed into 'something else' according to orthopedic surgeon who is familiar with my illnesses - says there is inflammation but not from bursitis anymore, no ability to absorb chromium ("none detected" according to every test! lol) despite my weekly myer's cocktail (tailored drip) and daily liquid chromium picolinate...etc.

    Since no one knows when I contracted Lyme (could be years ago or recently - who knows - I get all sorts of rashes, but I don't recall, and I don't have brain fog, a tick rash as I know what they look like), I am wondering if taking amoxycillin will be worth it since Lyme, if not caught early, becomes chronic. I was prescribed 500mg for one month.

    If wondering, yes, I still have FM/MPS and M.E. I'm a "classic" case.

    Note: I was infected with parvovirus three years ago from a cat - twice - so re-infected...triggered flare, relapse and more. I've read that sometimes that can lead to Lyme...who knows. People w/ compromised immune systems CAN, indeed, contract parvo from an animal like a cat, dog, etc. I feel like a character from a Stephen King novel! lol

    Any experiences with this situation? Sorry for the verbose and convoluted post.

    Thanks, in advance, for any advice, information and/or assistance.

    Hugs,
    LB32 (Leeza)

    p.s.
    Please pardon typos, but I have chronic, incessant, 24/7 head pain (rare even for people like us), so looking at the computer screen can be difficult...to think that I was an English major! LOL Hard to believe... *grin* :p
  2. victoria

    victoria New Member

    There is a Lyme board here that has a lot of info for you... click on message boards up above. Also there is a lot of info at ilads.org including a lot of links. And if you do some searches on Lyme in the search box above on this board, you will find info as well.

    If you've had it for more than a week, one month probably won't work. But this is a huge politico-medical debate right now unfortunately... so it will pay to educate yourself as much as possible. I would find a good doctor who calls himself LLMD (lyme-literate MD) to treat you, my personal opinion. My son has chronic lyme, and is slowly getting better.

    I wish I could write more, but overwhelmed myself with things... but please take the time to visit the lyme board here and ilads.org.

    all the best,
    Victoria

  3. balletdancer74

    balletdancer74 New Member

    Hi Victoria,

    Thanks for the information. I guess I asked about Lyme on the CFIDS/M.E & FM board since I wanted to know who has all of them.

    I'll look into the links you suggested. I'm happy to hear that your son is on his road to "recovery." I'm being careful with my words after the whole message board "discussion/debate" regarding "cure" and "remission" and "recovery" recently. :)

    Again, thanks for taking the time to respond to my post. Basically, one month of antibiotics isn't going to do much for me (my opinion), so I'm going to research some more even though my doctor also specializes in everything I have...including Lyme.

    To Better Days,
    LB32 (Leeza)
  4. Nimzovich76

    Nimzovich76 New Member

    band 41 is reactive to the antibody correspondent to the antigen/protein expressed in the flagella of spirochetes.

    A positive IgG 41 only tells you if you ever had a spirochete infection.

    Very often people have spirochetes living in their mouth specially in cases of gingivitis.
  5. balletdancer74

    balletdancer74 New Member

    Hi,

    I figured that if only one band came out as reactive, I must have just been exposed so to speak to Lyme.

    Nevertheless, I have been feeling worse and relapsing more than usual with CFIDS/M.E. (I've got FM, a small pituitary tumor, etc.) the past couple of months. I simply wonder if there's a connection.

    My immunologist is only putting me on antibiotics (one month of amoxicillin) to see if anything changes, but she knows that chances are not much will happen.

    Any suggestions or thoughts on treatment, if any?

    Thank you again for your response and feedback.

    Best,
    LB32 (Leeza)
  6. kellyann

    kellyann New Member

    Chronic,incessant,24/7 head pain is a major symptom of Lyme. It is one of my worst gripes. Mine is at the front of my head. Feels like the temples and behind my eyes,like my eyes will just bug out from the pressure. The pain is horrid, the whole front, top half of my head. Where is your pain?

    Where ever it is, I hope you find relief. I woke up at 4 a.m. this morning with a migraine and was unable to go back to sleep for the pain.

    Good luck to you! May God bless you!

    Take Care!
    Kellyann
  7. balletdancer74

    balletdancer74 New Member

    In some "twisted" way, it's "comforting" to know that I'm not alone with the perpetual head pain. I WISH I could say that I get headaches or even classic migraines! lol I'm sorry to hear you're in the same boat.

    My head pain is ubiquitous and leads into my neck...It's there ALL the time. When I get the head pain attacks (HPAs), however, I want to blow my head up (lol) which I'm sure you can relate to.

    I do acupuncture, myofascial massage, cranialsacral work, heat on neck, ice on head unless muscular or neuropathic...neuro/biofeedback helped for a bit but insurance stopped paying...

    Thanks for responding. I know a lot of people who have full blown Lyme and who suffer from migraines, but no one has ever said that it's 24/7 head pain/pressure...I only three people with FM and M.E./CFIDS who have the same type of incessant head pain like us.

    Here's to head pain free days!
    LB32 (Leeza)

  8. Gail8899

    Gail8899 New Member

    My husband tested positive for Lyme at the same time I did, but he did not have as many symptoms. Dr put him on 3000mg daily of amox for 6 months. (no, that is not a typo) What we did not know at the time was that amox can cause the Lyme to form protective cysts around itself that amox can't get through.

    The very least treatment you should have for later stages of Lyme is 200mg doxycycline a day for several months. Also you need tested for other tick borne pathogens.
  9. balletdancer74

    balletdancer74 New Member

    Thanks for the information. Yes, at first I thought the 3000mg of Amoxi was a typo. :)

    I've been placed on 600mg a day of amoxicillin for a month to see if anything positive happens. If so, I would continue.

    At this point, new diagnoses never seem to surprise me. Tragically funny but true.

    Thanks again for responding...I'm saving all of the information being sent my way for my doctors...

    To better days,
    Leeza
  10. victoria

    victoria New Member

    The cysts protect immature spirochetes. Flagyl should be routinely pulsed for this reason, as it is what is used to dissolve the cyst-form. Anyone who did not take Flagyl should find a knowledgeable LLMD...

    Also to be considered is the fact that, since there are at least 100 varieties of Lyme in USA alone, 300 world-wide, a different abx may work better on the lyme... but don't forget the flagyl...

    Also it is likely that if one has Lyme, there are co-infections that should be tested for (altho those tests are even less reliable than the lyme tests unhappily) and strongly suspected if symptoms are persistent...

    It pays to educate yourself... truly... read as much as you can!

    all the best,
    Victoria

  11. Nimzovich76

    Nimzovich76 New Member

    My advice is to get tested through either lab (MDL is willing to work with your insurance) Western Blot and perhaps PCR.

    Most controls (people without lyme) tested positive for band 41 in a study aimed to define the criteria for considering a positive current/past Bb infection in blood serum.

    In other words band 41 is not specific to lyme, only to spirochetes. It would be more likely to be positive in IgG than IgM since it would imply past exposure to spirochetes (in the case of gingivitis for example).


    MDL and IGenex will include other bands, including band 31 which is speculated to be very specific to Bb. Furthermore, the vaccine against Bb uses OspA (band 31) to generate antibodies.

    You should rather consider better testing. Is not a bad idea to do a trial abx, the problem is that at this point if you do have lyme, you'll probably need much more agressive treatment than amox. The good news is that if you do have lyme you could make a remarkable recovery.

    Try to get tested before you get on abx.




    [This Message was Edited on 11/30/2006]