Karatelady52 Update at FFC July 26-LYME not FM

Discussion in 'Fibromyalgia Main Forum' started by karatelady52, Jul 26, 2005.

  1. karatelady52

    karatelady52 New Member

    Hi All,

    Today was a big day for me. I got back the virus panel and here's what came back positive:

    CMV (Cytomegalovirus)

    Epstein-Barr Virus

    Chlamydia Pneumoniae (not same as sexually transmitted
    disease Dr. B. pointed out)

    LYME Positive --- 5 bars were positive!

    I just took my first Heparin shot. I'll also be taking Samento, Cumanda and Burbur (helps with herxing). She also wrote me a prescription for Doxycycline. Dr. B. said some of these will help with more than one virus.

    I'll start with just the Heperin and slowly add the others.

    The best part of the day was meeting and having lunch with Lynn Coleman. She is such an encourager. I liked her immediately!

    Sandy




    [This Message was Edited on 07/26/2005]
  2. ANNXYZ

    ANNXYZ New Member

    and boy was the lyme a surprise . Looking back it should not be as I had strange rashes early on - weird looking
    red streaks that were funny shapes under the skin that would last thirty minutes and disappear . I never had a bullseye rash , nor classic arthritis symptoms . I have always felt intuitively that an infection was responsible , as my health went from great to bad very rapidly .

    I tend to think the body's inability to fight the lyme by itself taxes the immune system and the other infections reactivate because the immune system white cells are having the life sucked out of them by while lyme parasites .

    I am glad you have some answers and wish you success in improving .

    I hope yone here seriously makes an effort to get a reliable lyme test from Igenex or Bowen .
  3. ldbgcoleman

    ldbgcoleman New Member

    Sandy

    You made it home and even posted! Sorry you have Lyme but at least you know where you stand and what you have to do. You can take the steps to kick it in the tail. I will continue to think about you and send good thoughts your way.

    Annxyz- I totally agree with you. We have Lyme or im my case EBV and our immune systems are so taxed handleing it we get ill and start to have all kinds of other problems which in turn causes symptoms that add up tp Fybromyalgia. If we can figure this out why can't these Drs??

    I know Lyme is a tough battle Good Luck and Take Care. Lynn
  4. karatelady52

    karatelady52 New Member

    I never had any type of rash or bull's eye on me. Plus, I'm from Florida.

    Yesterday my step sissy went to the VA and told them she thought she had Lyme. She has been feeling bad for years now. The doctor told her she couldn't have Lyme because it was only in the Northeast. He treated her so horribly she left crying. I hope she can find a doctor who can help her. She lives in Chattanooga, TN.

    I did my first shot Lynn, how long until the bruising starts? I'm ready to tackle these viruses!!!

    Sandy

  5. ldbgcoleman

    ldbgcoleman New Member

    I started bruising very quickly. Maybe you won't bruise so bad but I would stll recommend putting ice on it to minumize the bruise and swelling. It can't hurt. Sound like the Lyme had better be afraid you are going after it! Have a wonderful evening. Lynn
  6. karatelady52

    karatelady52 New Member

    I appreciate all your help!

    Sandy
  7. ANNXYZ

    ANNXYZ New Member

  8. ANNXYZ

    ANNXYZ New Member

    Bump

    If you are looking for a reliable lab test for lyme , you may want to check out Bowen Labs or Igenex Labs . They have websites and you can ask your doc to order a test from a RELIABLE lab .

    MANY of us her have recently been diagnosed with lyme and have been told we had FM or CFS for 10 - 20 years .

    Frequently people can have lyme ( like me ) with no classic bullseye rash or arthritis / joint pain . My symptoms ahve been fluishness , disabling fatigue , poor concentration and intense muscle aches. I am glad to have a diagnosis and hope everyone here will rule out lyme as the source of their FM/ CFS with a relaible and accurate test . It could mean the beginning of getting well for you too .

    For more info go to Ilads.org and checklyme basics and treatment .
  9. rosethorn

    rosethorn New Member

    Just writing on a message board for the first time. I was reading about sinus problems & FM and read your profile (God is important in my life as well) and wanted to ask you about what types of products you were using in your salt & baking soda mixture for sinus problems. Have you found that what you are using helps a lot?

    There does not seem to be the help here in Canada for FM like there is there in the States. In reading some of the comments people have written it seems that people are getting tested for different types of viruses, etc. Did your regular physician order these for you?

    Thanks for your help in this or from other readers if they see this.

    Thanks,

  10. karatelady52

    karatelady52 New Member

    My regular doctor only did a few blood tests but when I started at the Fibromyalgia and Fatigue Center, they took 22 vials the first day I went. Talk about thorough!
    Many people fly in from other states to get to one. They are truly wonderful and worth every penny.

    The center is where they did the viral and Lyme test. I've read on here that some people get their regular MD to order the viral testing but I'm sure its hard to find one that will.

    I use 1 t. salt (or less cause it'll burn if you use too much), 1 t. baking soda, a few drops of tea tree oil and sometimes I put a few drops of grapefuit seed extract.

    It does help a lot. When I feel like I'm getting a sinus infection, I start irrigating once or twice a day. It will go away. My allergist told me a long time ago that it's better to irrigate than taking meds because it doesn't have to go through your system before it gets there.

    Hope this helps,
    Sandy
  11. bpmwriter

    bpmwriter New Member


    sorry, i missed something along the way on this sinus routine. the recipe you mention, what do you do with it?
    what's the procedure for irrigating??

    eddie
  12. karatelady52

    karatelady52 New Member

    The basic procedure for irrigating is:

    1 t. salt
    1 t. baking soda

    I tweak it by adding a few drops of tea tree oil and
    a few drops (only a few, its strong) of Grapefruit Seed
    Extract.

    After filling up the irrigation system you put the tip rubber top in one side of your nose, hang over the sink and it will come out the other side. Sometimes I will do that a couple of times. You won't believe the junk that comes out when you have a sinus infection.

    I bought my irrigation system online. Actually its the
    only one I've seen. Its by Grossan. The one I used before that was just a waterpick cleaning system for teeth and I got the tip from my allergist.

    I really like the Grossan better. I think it was around $80 but not sure.

    Sandy
  13. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    From what I see on message boards, the people in the States seem to have a much rougher time finding decent docs and getting credibility than we do here for FM/CFS. It seems to depend on if you live urban or rural too.

    When I lived in BC, they didn't have environmental medicine there covered by medicare, so if you wanted a naturopath you had to pay out of pocket. Here in Ontario though and much of the Maritimes, env. medicine thrives and they work very much like the FFC's, only been around much longer.

    Ottawa is a great city for cutting edge medical research too, and I've rarely encountered any ignorance over the dx. Some oldschool MD's can be dubious about certain aspects of env. medicine, but generally it's respected.


    Jeanne
  14. rosethorn

    rosethorn New Member

    Thank you for the help Sandy. Hopefully you will find help for your Lyme's disease. My cousin's son had a bad case of Lyme's and they spent a lot of money taking him for treatments in a "hyperbarich chamber". (not sure if I spelled that right)...anyway, he seems to be okay now.

    I will look into the irrigator...right now I use salt/water nosespray and my Dr. has me on Fluonase. The specialist said I needed surgery but I'm not sure that I agree since a lot of it seems to come from allergies...and I didn't realize FM could be a cause either.

    In answer to you Jeanne-from Canada...I'm from the Western prairies...basically the specialist told me, Ï have good news and bad news, "You won't die from FM but we can't help you...and I wouldn't recommend support groups because they just complain." So, that's about it...but I have seen a Naturopath Dr. - she has been a wonderful help in finding my food allergies - gluton & dairy, corn, nuts. Anyway, if I watch what I eat it helps a lot.

    Wishing you the bes
  15. lilbird

    lilbird New Member

    I am so glad you are getting some answers. Now you know what needs to be done to start to get better.

    Its getting sort of shocking, all the Lyme dx latly. I just wondering just how many of us have it. Everyone needs to get checked.

    Cathy
  16. dontlikeliver

    dontlikeliver New Member

    I have not read the entire thread, but having caught the end of it just wanted to mention that atypical rashes are actually more 'classic' than the 'classic' bulls-eye. They can be single, or multiple. I had them all over my body, twice.

  17. ANNXYZ

    ANNXYZ New Member

    when I first became ill , I would have BRIGHT red
    streaks shaped kind of like icicles that would appear under the skin for thirty minutes or so . Then they would fade and reappear in another place . They were very strange.
    They did not hurt and my doctor saw them and said he had no idea what they were . During that time I also had
    burning sensations that felt like stinging on my skin .
    These episodes were painful and rather unnerving .

    I think all of this was lyme related .

  18. razorqueen

    razorqueen Member

    and asked for the lyme test, but my doc says we can't do that here. I live in rural Manitoba Canada. We have LOTS of woodticks around here. How do I convince him this is important?
  19. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    Research is saying more and more that most don't ever had the classic bullseye rash, but they get other kinds perhaps. An article posted here recently (I think) described a few alternate rashes and one was a ringworm-like rash.

    Well, my cat does give me ringworm sometimes, he likes to pass on the fungus. Poor buddy, I guess he's entitled because I'm sure I gave him my syndrome, he has all my symptoms.

    So I thought I had ringworm again recently, but it was shaped wrong, a little oblong patch on my wrist. The usual remedies didn't get rid of it though. this stymied me, but a mth later it finally faded. I've been taking Olive leaf, and ALA, and lots of liver/antioxidant support lately, so I thought that did it.

    Last week I got this odd dryness inside my arms in the elbow crease, where the skin is usually softest and sweaty in the summer if anything. Big long patches about 8 inches long. I tried showing my doctor when I went in for that numb arm/heart palpitation scare, he pp'd it. Well it's now discoloring, a very vague blotchy beige, and I'm snow white.

    this is bizarre, I've had similar vague little rashes for years taht came and went, docs just said eczema. Most often under my mouth, same vague discolouring and dry. I'm suspecting more and more taht I have chronic Lyme, no ones ever even tested me I dont' think. Questran didn't help, but hit me like a ton of bricks, which they warned it would if you had untreated Lyme.

    So do these rash thingies sound familiar to anyone?


    Jeanne
  20. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    bump, ?? for those experienced w/ Lyme rashes