Please friends, talk to Dr. about Lyme, get tested

Discussion in 'Fibromyalgia Main Forum' started by hopeful4, Nov 15, 2005.

  1. hopeful4

    hopeful4 New Member

    NOW I find out I have Lyme Disease, after 5+ years of being too ill, after a DX in 2000 of CFIDS, in 2003 breast cancer, in March 2005 FM, and NOW it's Lyme Disease.

    I believe that Lyme is at least a very strong contributor to my illness, perhaps even the underlying cause. I must have been infected many years ago, and will never know exactly when or where I got it.

    It's a patient little bugger, waiting around for my moment of vulnerability (surgery) for a "sudden onset" of debilitating fatigue and cognitive difficulties. It took hold when my immune system was weakened, and proceeded to upset my hormones, thyroid, brain function, and encourage candida overgrowth, and dormant mycoplasma to pop up. It caused a cascading effect on one system of my body after another, and lowered my NK cells making me vulnerable to breast cancer.

    Chronic Lyme is a formidable foe which can take months or years to treat, sometimes resulting in "cure" sometimes we have to "manage" it.

    This is why, my friends, I urge you to please discuss the possibility of Lyme infection with your doctors. So many of us have overlapping symptoms. The Western Blot from Igenex is supposed to be the best test.

    My first test through Quest came up negative in March. It's possible that the doxycycline I started to take (about a week before the Igenex test) for the mycoplasma "irritated" the Lyme and kind of kicked it up so that the test came back positive (IGG was Igenex positive, CDC negative; IGM was Igenex positive, CDC positive). This, my doctor said, could help in diagnosing it.

    Wishing you all well!
    Hopeful4

  2. 57Wagon

    57Wagon New Member

    Thanks for the info, I'm going to ask the doctor about Western Blot next week
  3. hopeful4

    hopeful4 New Member

    Please see my posts under your "Question to those who have Lymes disease or CFS"

    It's shocking to get the diagnosis after many years of illness, but then, it's a blessing to know what's causing so much illness, and treat it.

    What doctor do you see? How is that going? What part of the country do you live in? The reason I ask is that it's important to work with a Lyme Literate Doctor (LLD), one who has treated over 500 patients with it, or at least one who is Lyme Friendly, willing to learn and work with the current guidelines.

    Speaking of guidelines for treatment, see:

    DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES by Joseph J Burrascano, Jr., M.D. at iliads.org

    Take care,
    Hopeful4
  4. karatelady52

    karatelady52 New Member

    I've been ill since I was a teenager with heart palpitations (nothing was found), after that it was one thing or another-- sinus surgery, allergies, TMJ, IBS. In my 30's and 40's fatigue that worsened as time went on and pain that moved around but mostly in back of neck and shoulders.

    I had all the classic symptoms of FM/CFS and for years I thought I would have to live with it.

    Then I get a positive Western Blot back and now know, all of this was from lyme disease. I never had the bull's eye rash (a high percentage don't) but remember being around ticks since we always had dogs and cats.

    My nurse at the FFC told me a very high percentage of patients who come in there for CFS/FM have viruses and/or lyme.

    I don't understand why doctors don't see that chronic lyme disease is a growing problem.

    Sandy
  5. hopeful4

    hopeful4 New Member

    I'm so sorry that you were so ill from such a young age, you have been through so much. What part of the country did you live in when you believe you were first infected with Lyme?

    It seems that the awareness of Lyme is more prevalent on the east coast and parts of the midwest. Detection is also not that easy.

    Even though I've been on this board for a while now, I really didn't think that I had Lyme. My first test came up negative (Quest), but the persistence of my symptoms, and putting together some puzzle pieces by my Dr. got me to the Igenex test.

    Now we can be treated, and hopefully, with time and good care we can regain our lives.

    Here's to your healing and recovery!
    Hopeful4
  6. redsox10

    redsox10 New Member

    Thank you Hopeful4 for spreading the word on Lyme. My daughter was very ill for 2 years before we found out she had Lyme. She was first diagnosed with CFS.

    After 13 months of being treated for Lyme we see improvement. She has a long road ahead of her but she is better than a year ago. My son was just diagnosed with neuropsych Lyme.

    I can not stress enough how important it is to see a LLMD. Lyme is a very serious and complicated illness.
  7. karatelady52

    karatelady52 New Member

    You won't believe this ---- I lived in Florida all of my childhood and we spent summers in Highlands, N.C.

    I don't think any of those areas were hot spots.

    I do remember my dog having paralysis in his back legs and the vet said it was from a tick.

    Sandy

  8. 57Wagon

    57Wagon New Member

    Hi hopeful4. I have been seeing a doctor who is supposed to specialize in CFS/FM. I live on the west coast of Canada, BC.

    I have been suffering from fatigue since I was a teenager but the serious fatigue with brain fog and loss of memory started three years ago. When I was a kid I always played in the woods, I loved it out there so there is a good chance I was exposed to ticks.

    Is the Western Blot and the IGenexe Western Blot test the same test?
    Is the expanded Western Blot and the IGenexe Western Blot test the same test?
    Is the IGenexe Western Blot only offered by IGenexe or can any lab perform the test?

    Thanks
  9. hopeful4

    hopeful4 New Member

    Hi neighbor,
    I am also on the west coast in WA. The woods are so beautiful here, I grew up in Ohio. Who could not love the Rainforest!!

    I have to say, the Lyme Disease DX is all new to me, so I'm learning as we go along. As far as I know, the test is called "Igenex Western Blot". Igenex is the lab, and they have their own protocol for doing the Western Blot. I don't know what "expanded" is, maybe someone else here does.

    Other labs do test for Lyme, but they are not considered reliable. To the best of my knowledge, Igenex is the premier lab for testing Lyme. I believe the test costs about $350 through Igenex. My medicare will pay for it.

    I was previously tested through Quest lab, and it came up negative.

    There is a lot of info online for Lyme. I just found Washington Lyme at walyme.com, it has loads of info. A little hard to digest it all with this amount of brain fog, but I'll do what I can.

    Wishing you the best,
    Hopeful4



  10. jsshutt

    jsshutt Member

    57wagon: I was just in your 'neck of the woods' visiting family from Hopeful4's 'neck of the woods' who met me in Vancouver for a weeks reunion.

    My Mom and sisters got to see my 2 yr old son for the first time. We all have either Lyme and FyBro and CFS. Talk about Brain Fog Reunion!

    It was a hysterical sight to watch us in downtown Vancouver during the VIFF with 100's of film producers, writers, etc.
    Trying to park, find our way around, a bunch of clowns!

    I look at them and say: "Man, do I look that pathetic, too?"
    LOL Sometimes you have to just laugh at yourself.
    I have been sick ever since. Never traveling internationally with a toddler and no husband again!

    Stephanie in Connecticut
  11. happygranny

    happygranny Member

    I went to see a Lyme Literate doctor in Hope BC and after a lot of questions etc, he said I have the profile of someone with Lyme.

    He ordered a number of blood tests, none of which will be the Western Blot. I can have that later if I feel the need.($$$) First I will wait and see the results of these tests.

    It was good to hear him say he would be surprised if I didn't have the disease, I really want to test positive to at least the co-infections if not the Borrelesiosis (sp?).

    Once I start on the ABX there is a good chance I will get some of my life back.

    It won't be easy, but at least it is doing something for me that is promising.

    Wish me luck,
    happygranny
  12. karatelady52

    karatelady52 New Member

    You should post this separately on the board so others can see it. I read about so many in distress who think they have FM/CFS and believe they can't do anything about it.

    I think a lot of people have lyme and could be working on getting well instead of living with a FM/CFS "diagnosis."

    I'm so glad you went to an LLMD. They know their stuff.
    A good website (if you haven't already found it) is Lymenet dot org. I've learned a lot there.

    Sandy
  13. pepper

    pepper New Member

    if you were possibly a Lyme disease sufferer? I have done the check list of symptoms and have 42 out of 75 but so would everybody else with CFS/FM.

    There are so many CFS/FM sufferers who turn out to have Lyme disease that I wonder if it is worth pursuing. But I came down with CFS right after a short bout of mono. Wouldn't that make me a typical CFS case?

    If you were me, knowing how I contracted CFS, would you be tested? It would probably require flying from Ottawa to B.C. to see the same doctor that happygranny just saw. If it were at all possible that I have Lyme disease it would be worth it!

    Pepper
  14. karatelady52

    karatelady52 New Member

    Just the fact that your Epstein-Barr (mono) is active is an indication that something is going on in your system.

    If it was me, I'd be making an appt. with the LLMD and getting a diagnosis one way or the other. Maybe he will run the Igenex blood test for lyme.

    Remember, CFS is a syndrome and not really a diagnosis so its good that you are looking for the root cause of why you have CFS.

    Sandy

  15. pepper

    pepper New Member

    for your input. I have been following the Lyme posts with interest but just never thought that it applied to me since there is such a strong mono/CFS connection.

    I will start researching lyme-literate doctors!
    Pepper
  16. ilovecats94

    ilovecats94 New Member

    I am interested in talking to my doctor about the Western Blot test from Igenex, but how much did you all pay for it?

    I don't think it would be covered under my insurance. I'd like to at least have an idea how much it would cost before I ask my doc about it. It is possible that he has never heard of this before.

    I would really appreciate any info you would have about the cost of this test and whether or not your insurance paid for it. I don't think mine would.

    Hugs,
    Faye
  17. hopeful4

    hopeful4 New Member

    Pepper,
    So many of the symptoms of CFIDS/FM overlap with the symptoms of Lyme it is really difficult to say for certain whether you have it or not without the test. That is my feeling after being sick for so long and just getting the Lyme DX.

    I'm not sure what the checklist you used was, but 42 of 75 symptoms sounds like a lot to me! Having mono does not neccessarily give you CFIDS. CFIDS/FM is/are a syndrome, made up of many dysregulated systems in our body, as well as underlying infections.

    I don't know that any of us can point to one thing that caused our illness, like you are suggesting that your CFIDS/FM was caused by mono. Perhaps the mono weakened your system and that was the "crisis" that brought about CFIDS symptoms, but there's more to it.

    I asked my Dr., if I now have a Lyme DX does that mean I don't have CFIDS/FM? She said no, I've got it all!

    I'm not saying that you have Lyme. I am saying that your health, your life are worth finding out. If you have it, it can be treated.

    I'm learning that Lyme has most likely caused my candida, kicked up a mycoplasma infection, bottomed out my NK cells, created neurotoxins which have given me extreme cognitive problems, etc. No wonder I can't function!

    Let us know what you decide to do.

    Take care,
    Hopeful4

  18. happygranny

    happygranny Member

    If you go to the canlyme.com site, register and go into the live discussion place, you can ask for an Ontario doctor. They have made reference to a Dr. B in Ontario, but they cannot put doctor's names on the mesage board.

    What happens is someone will message you privately, that is one of the things I did when trying to find a doctor in Manitoba.

    The cost for the Western Blot test that a friend of mine in BC paid was $500.00, and that included the shipping costs.

    All the best

    happygranny
  19. hopeful4

    hopeful4 New Member

    Although I haven't gotten my statement yet, I was told that the Igenex Western Blot costs around $350. I'm pretty sure that my Medicare will cover it.

    If you are uncertain about your lab coverage, try calling your insurance company to find out ahead of time.

    Good luck, take care,
    Hopeful4
  20. pepper

    pepper New Member

    I didn't realize that was what happened. Now you have it all at once! Good grief!

    You are right - I should check it out. I went on the Canadian Lyme Site tonight and emailed a lady asking for a lyme literate doctor around here. If there isn't one, I guess I'll have to pack my bags and head out to B.C.

    I may ask for doctors on another post on this site.

    Thanks so much for this post.
    Pepper