Dr just called....positive for Lyme..

Discussion in 'Fibromyalgia Main Forum' started by gypsysoul, Jun 8, 2009.

  1. gypsysoul

    gypsysoul New Member

    I have been sick for many years. I was told I have Fibromyalgia. I might even have that also. I wonder how he feels now, after telling me for over a year now (new Dr) that its all in my head. That my brain chemicals were not functioning properly. He said that is what FM is....

    Going to start antibiotics for a month, get blood checked again. Dr thinks I may have to be on them for 6 months. We do not know yet. This information was given to me only one hour ago. This is Monday 12:45

    Now I feel afraid.
  2. frickly

    frickly New Member

    I am very sorry you have lyme. I think the positive side is that you now have confirmation and know how to treat it. I went for years knowing I was sick but not being able to do anything about it. I hope the antibiotics help. This might be the start of your recovery and a new life!
  3. Nanie46

    Nanie46 Moderator


    I understand how you feel.

    I had a FMS diagnosis for 21 years before discovering the cause of my symptoms is the bacterial infection, borrelia, burgdorferi....lyme.

    Many people here have also discovered the same thing...their names can be found on a post on the lyme board.

    The best thing you can do is educate yourself about lyme and associated coinfections that many people also have.

    I am glad you are getting answers, since you can't really recover until you know the cause of the illness.....and that is what is so frustrating about being labeled with FMS or CFS....they always say there is "no known cause".

    I find that to be aggrevating since everything has a cause.

    Lyme can cause a fibromyalgia syndrome or a chronic fatigue syndrome.

    I urge you to post on the lyme board and also go to lymenet.org.

    Lymenet.org is a very busy lyme board with lots of intelligent people who will support you.

    You can go to lymenet.org....click on flash discussion....sign up for free like you did here....click on the Medical Questions board...then create a new post.

    Most people with lyme cannot read long paragraphs where the words seem to run together, so break up posts there with only 1 or 2 sentences per paragraph.

    It takes a good lyme literate MD (LLMD) to really treat lyme properly and to evaluate for associated coinfections like babesia, bartonella and ehrlichia, among others.

    I am glad to see that your Dr is talking about Rx for 6 months, however, it takes long term combination antibiotic therapy and treating coinfections too....plus addressing adrenal and other hormone issues.

    Many people with chronic lyme have to treat for 1-2+ years. It is possible to relapse later.

    It is also important to follow a special diet...gluten free, dairy free, sugar free, no sugar substitutes except stevia, no soy....no allergenic foods.....high protein, low carbs...no processed food.......candida diet.

    When taking antibiotics, it is necessary to take alot of high quality refrigerated probiotics at least 2-3 hrs after the antibiotics. Also many supplements are helpful. Fish oil is very important.

    Supps with magnesium, calcium, iron, etc, which many do contain, should be taken at least 2 hrs away from antibiotics.

    Getting a blood test in a month will not show that you are "cured", but your Dr could misinterpret it and tell you that...only to have symptoms return.

    Chances are that one month of antibiotics are not enough for you to notice any difference in symptoms......it takes a very long time....and many people take 2-3 antibiotics and antimalarials at once.

    I will add some links here with very important info for you to read.......





    I can be found on lymenet.org as Dekrator48.....hope to see you there...it's a great site.
  4. loto

    loto Member

    I know i've spoken to you before about my lyme test. I did not have the igenex lab test my blood, and the only thing that showed up on my lyme results was that the borrelia thing was "highly present". I got a second opinion from a doctor who laughed at me, asking me why I came to her. I told her I wanted the second opinion because of the borrelia being present. Well then she got a call on her cell phone and left the room! I was so upset for her laughing at me twice during the appt, and then taking a personal call that I left. I haven't had the courage to find another doctor for a 3rd opinion yet, do you think I should? The only thing I'm diagnosed with at this time is FM. Oh, and, on another subject I am having my uterus removed in a couple of weeks because of a baseball sized fibroid.
    So, could you please advise me what to do? in the meantime, i'll check out those sites listed.

    gypsysoul, I am sorry for your diagnosis, but, like other people have said, maybe now you can get the correct treatment and your quality of life will improve. Good luck to you

  5. cfsgeorge

    cfsgeorge New Member

    Lyme disease is treatable and curable. FM and CFS are not. Be happy that your competent doc found out you don't have FM. good luck to you!

    Can i ask you if your initial diagnosis of FM was based on the minimum 11/18 tenderpoints?
  6. Nanie46

    Nanie46 Moderator


    Could you please post your test results on the lyme board for me...just as they are written on your lab report?

    I am not sure what test you had or what the result actually was.

    Remember that lyme is never ruled out by just a negative test....a lyme diagnosis is based on history and symptoms.

    We have all been there....Dr's laughing at us, or telling us we are crazy, etc.

    Just forget about them and move on. It will be your own persistence that will eventually lead to a diagnosis of what caused your illness.

    99% of Dr's will not understand lyme anyway. They will only discount you and tell you that you don't have lyme.

    Read as much as you can and educate yourself. It is the best thing you can do to help yourself.

    Please post the details of your test on the lyme board and I'll try to help you.
  7. norris2

    norris2 New Member

    Saying that lyme is generally treatable or curable is only true if you don't have the chronic form. All you have to do is look at lymenet.org and read about all the years of suffering, go to a lyme specialist (LLMD) or go through it yourself. I would say that if you have chronic lyme there is a decent chance that a long course of antibiotics might lead to improvement, which it did with me, but only a minority really get out of the woods.

    Also, chronic lyme often doesn't come alone. Usually there are other infections and cfs/neuro stuff that may or may not be directly related to a lyme infection.

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