OMG! OMG! CFS/Fibro person diagnosed with lyme disease!!!

Discussion in 'Fibromyalgia Main Forum' started by ceili, Dec 27, 2005.

  1. ceili

    ceili New Member

    I can't tell you how excited I am about this!! I have had CFS for over 10 years, and Fibro for over 2. My doc said there is a new test being done by the Bowen Institute that detects lyme disease that other tests don't show!!

    I showed ++ positive for lyme........doc is immediately sending me to the hospital for first treatment with antibiotics later this week. A visiting nurse will come each week to work with me.

    I knew I wasn't crazy for all of the pain, fatigue and mental blurriness I've been fighting for years!!!

    I pray this is true...and I've found the answer finally. My doc told me that they believe that all CFS, Fibro sufferers really have lyme disease but until now they couldn't prove it clinically. Now they can!!

    I am so excited......though not too thrilled that I have spirochetes running through my body (muscles, organs, bones, brain included!)

    This may be our answer friends!! :love:

    Here is the link if it is allowed:
    http://www.bowen.org/site/technique/lyme.html
    [This Message was Edited on 12/27/2005]
  2. ceili

    ceili New Member

    Her PA's brother was diagnosed with Fibro years ago....he was in a wheelchair for now reason they could name and the PA dedicated her life to finding out what was really causing this. She found the Bowen Institute......had his blood checked and they started him on antibiotics for lyme as he tested positive with this test.

    2 months later....he was walking and got his life back! Doc looked into it and told me that she has 10 patients of late where they couldn't find an answer to their pain and fatigue but proved positive for lyme after this test. Now all of them are at least 80% better!! I live in PA, one of the high lyme places and tested negative, even though multiple docs thought I had this and tested me for it.

    I hope to be the 11th success with my GP's office. ;)
    [This Message was Edited on 12/27/2005]
  3. mbofov

    mbofov Active Member

    Thank you for posting this - am going to ask my doctor about it. I had one of the other tests for lyme and it came out negative and I never followed up on it.

    Mary
  4. rockyjs

    rockyjs Member

    I also had Bowen testing, which is controversial in the medical community, but after a lot of research seemed the best to me because you can continue to measure the titers and see how the therapy is working.

    One of my friends had advanced Parkinson's Disease and couldn't feed himself, walk, etc...after just a few weeks of treatment (he used Samento) the symptoms were reversing and he is doing great.

    We also have a doctor in our town who was diagnosed with ALS and told he only had about a year to live. He saw a lyme specialist after reading about it on the Internet and now has recovered and opened a clinic to treat lyme.

    My titers were very low 1:2 so I didn't need any treatment. My body seems to have done a good job fighting the spirochetes - I have had thousands of tick bites in my life!

    Jan
  5. Dee50

    Dee50 New Member

    Is this the Q-Rib test for lyme?
    Going to the site now:)
    Does anyone remember the cost of this test?
    I see it is the Q-Ribb test for lyme.
    Dee50
    [This Message was Edited on 12/27/2005]
  6. lolee

    lolee New Member

    Do all of you who have been dx with lyme remember having a tick on you?

    It just seems so spooky . . . . that so many people would have this only find it out after such a long time of suffering . . . . if someone remembered getting a tick, I would think that would be one of the first things they would be tested for . . . . ???
  7. victoria

    victoria New Member

    statistically it is reported that fewer than 50% ever experience the "bulls-eye" rash...

    Deer ticks are so tiny, they are about the size of the period at the end of this sentence. Bloated, they're about the size of a 'O'...

    If they're in your hair or part of your body you can't see easily, one could easily be missed.

    My son has active/chronic Lyme, never had a bulls-eye rash, never saw any deer ticks on him either even tho I checked him when he was little and his Dad checked him when he got older as he spent a lot of his time out on our land; we also told him to check himself for ANY type of tick, deer ticks included --

    we were extra vigilant as his older sister got Rocky Mtn. Spotted Fever when she was 9 and almost died.

    all the best,
    Victoria
  8. lolee

    lolee New Member

    WOW . . . . . .thanks for the info! I never knew! I live in a wooded area but the only ticks I have ever seen were on my dog and they were HUGE!! so very very gross when you have to pull those little suckers off! Making sure you get the head, etc.! GROSS!!

    I'm so sorry about your kids, what a major a$% bummer . . .it's hard enough on us grown ups, but I hate hearing about the little ones going through stuff!!

    I hope the treatment is good for these kind of things!!
    luv, & THANKS AGAIN!!!!

    Lolee
  9. karatelady52

    karatelady52 New Member

    Igenex and Bowen are the best labs for testing for lyme. Lyme is also a clinical diagnosis from an LLMD (lyme literate MD).

    A good website where you can learn all you need to know about lyme is Lymenet dot org. They will give you a lot of help with questions and problems you encounter.

    Its a very long, hard road getting well from Chronic Lyme Disease. Many have been on abx for a couple of years before seeing some positive results.

    Most don't believe antibiotics alone will completely rid the body of lyme. There are a number of alternative methods you can look into after you've been on abx for a year or so.

    I know you're excited right now but just get yourself geared up for a tough ride. I was excited too when I was first diagnosed but now that I'm my 5th month, I'm having a very difficult time with herxing and all the ups and downs that go with lyme.

    Believe me when I say I'm not in any way trying to discourage you. It is exciting to finally have some validity to our sicknesses. Like you, I went to doctors who didn't have a clue as to how to help me.

    So welcome aboard the lyme train and hopefully, I'll see you over on the other website.

    Sandy
  10. ceili

    ceili New Member

    Not only deer ticks cause this...even dog ticks can carry it, as well as fleas and other insects. I always get a bad rash from mosquitoes and fleas. Never put 2+2 together.

    My dh just came home from the local supply company and several people there said it is an epidemic in PA and NE, and now going all over the country. The owner's wife was so bad and was seeing the local doc I went to before....and he put her on anti-depressants....same as he did me.

    I quit him when he refused to help me with LTD and found this wonderful doc that I'm seeing now. She's the one who said the current tests don't measure lyme accurately and wanted me to take the newest one at the Bowen center. Yep, came out ++positive for lyme.

    Dh also told me the first week of antibiotics wreak havoc on your system, so I know I'll get worse at first. But he also said the week after his friend's wife suffered, it was like she was on speed, feeling good and trying to do everything at once. Downside is, the longer you have it, the harder it is to rid yourself of the lyme disease. She still has to go for additional antibiotics every few months as the virus can come back. I'm ready to deal with this...as needed.

    Because the Bowen Center is a research institute you have to pay for the test. For me, it was $250 plus the cost of shipping ($88 on the 22nd of December). Doc's can't take or ship the blood, so I had to do it via Fedex to them. The answer came in 48 hours that I had lyme.

    Today, I am the happiest woman alive because I may have an answer to years of suffering. :)

  11. victoria

    victoria New Member

    besides the LLMDs opinion that other ticks and possibly mosquitos can carry it, as far as deer ticks are concerned, don't go sitting on fallen trees/logs, leaning against trees, or even hugging them...

    highest incidence of deer ticks is on the trunks and picked up when you're doing any of the above.

    Another interesting fact is that dogs can get Rocky Mtn or Lyme... we've always had at least 4 dogs, and over the past 18 years have had probably about 20+, but not one ever got any kind of mysterious disease or died mysteriously... go figure, they were all outside dogs except for the current 4.

    V
  12. hopeful4

    hopeful4 New Member

    Hi Ceili,
    Isn't it kind of crazy, Lyme Disease being the answer to one's prayers! So, congratulations on finding the cause of your illness. I was just DX w/Lyme recently as well, and many of us on this board are finding we have Lyme.

    Wishing you well throughout treatment, it's going to be a "process".

    Take care,
    Hopeful4
  13. ceili

    ceili New Member

    This could be your answer, as it might be mine. Don't hold on to the label docs have given you. I've been told I have chronic fatigue and fibro and nothing can be done to help it. I always thought this was CRAP by doc's who don't have a clue..........so they give us antidepressants. :rolleyes:

    I will definitely post my lyme protocols and solutions that they offer me over the next few weeks.. Doc actually told me that Bowen believes CFS, Fibro, MS, LGD and others will be found to be in reality lyme disease.

    Never give up hope for an answer and subsequent cure for all you have gone through for years as I have. I just hope
    my diagnosis helps you all and it is correct.

    :pray:[This Message was Edited on 12/27/2005]
  14. Kimelia

    Kimelia New Member

    I had rocky mountain spotted fever well over 10 years ago. Makes sense that I could have gotten lyme too. I lived in the country, ticks were everywhere. I used to play with the dogs that lived outside and certainly carried the little buggers.
  15. meowchowchow

    meowchowchow New Member

    It's wierd to say congrats, but congrats! At least you have an answer and can begin to feel better. I am anxious to be tested for lyme soon.

    I have been doing a lot of reading on the lyme org website and was surprised to learn that lyme can be transmitted by mosquitoes, horse flies, and fleas! Who hasn't been bit by a flea in their life???

    Meow
  16. jbennett2

    jbennett2 New Member

    I was clinically diagnosed with Lyme in Sept. My dh and daughter also have it. We live in Vermont. I blame it on my dh who spends tons of time in the woods and always comes home with bites on him, tics in his clothes...
    There are other ways of getting Lyme than by a deer tick bite. Check out Lymenet for lots of interesting info.
  17. Wittum4

    Wittum4 New Member

    Ceili,

    My mother is in severe pain also. She was bitten by tick and it was attached on her for a month. She developed the rash and her dr. put her on antibotics for awhile. This has been 5 years and she has had problems since. The drs. all say now she has Fibro. I think different. I want to get my mom these test. What actually are the test and can any hospital perform them. I would appreciate any help we can get.
    I'm losing my mom more and more every day.
    Thanks Sher
  18. MaryCecelia

    MaryCecelia New Member

    I'm sure glad for you that you have some answers! Also, it sounds like your Dr. knows how to treat it, so that's a real plus. What will be your treatment protocol? I had the Bowen test, too, and was positive for Lyme. I've been on Tetracycline since May but have experienced no changes. I'm seeing my dr. today and plan to tell him it's time to try something else. I get the feeling my dr. doesn't know how to treat it. Again, congrats and keep us informed!!!
  19. sapphire

    sapphire New Member

    Ceili, that is good news. You finally have something that can be treated. I think we would all be surprised at the number here that would come up lyme positive if they were tested with the right test and the right lab. I'm another one. I've probably had it since I was a teen and my daughter has congenital lyme and hubby has it, too. We are all in treatment. I had tick bites on me when I was a kid a lot but don't remember anythng specific.

    Someone here mentioned that they weren't getting better and that maybe their dr didn't know how to treat lyme. If you aren't seeing an LLMD then I doubt he does know how to treat it. More than likely you will be undertreated. Go to lymenet dot org and ask for a dr nearest you. They will help you there. I'm so glad to see so many here getting the correct diagnosis.

    Sapphire
  20. karatelady52

    karatelady52 New Member

    I just saw your post about your mother. Get her to a LLMD (lyme literate MD) even if you have to travel.

    Either that or a Fibromyalgia and Fatigue Center as they will get her the proper test for lyme. She probably does have lyme from what you've described. Most doctors put you on a 4 week abx treatment which isn't nearly long enough. Many become very ill after a tick has been on them a short period of time, much less a month!

    I hope you come back on this forum and read this or go to Lymenet.org for further information.

    Sandy