Misdiagnoses of CFIDS and Fibro for 26 years

Discussion in 'Fibromyalgia Main Forum' started by kali_omalley, Apr 24, 2009.

  1. kali_omalley

    kali_omalley New Member

    I'd like as many people as possibe to know about this as possible. I was diagnosed 26 years ago of having CFIDS, and Fibromyalgia. I also have degenerative disc disease and many issues wth my spine. But after 3 decades of severe and recurring upper respiritory infections, asthma and bronchitis I was alonst always ill. Each time getting worse and worse, weaker and weaker. My life passing before my eyes. After 9 consecutive months in the last year of being very very ill with nervous system symptoms, blinding headaches spine pain severe coughing, bronchitis etc. I pleaded with my doctors to not guess anymore and quit bombarding me with antibiotics. I sought out a Pulmonologist who ran pumonary function tests, a high resolution MRI and told me she thought I was on the road to recovery as all the tests came back negative...She also ran a Gram stain ..Negative. I then wen to my 3rd Infectious dieases Doc. After being off antiniotics for about 3 weeks I asked him (as I had the other Infectious Dieases docs ) to run a blood culture. Actually grow the blood in a petri dish and see what shows up. This doctor FINALLY did it ..It was returned with 3 forms of walking pneumonea that have gone systemic. Many Docotrs I saw were ina real box not delving deep enough becasue I did not run a fever. I hurt as badly as I do because ithe infection is in my joints, I have asthma and chronic respiritory infections because it's also in my lungs, I have neurological infections because it's in my spinal column and brain. The pathogens are most pften missed as they are very small, not shaped like a normal cell but are referred to stealth pathogens. The cross the blood brain barrier,they are also gram negative so they don't show up in a gram strain. The pathogens I refer to are Mycoplasma Pneumoniea, Chlamydia Pneumonie, and Chlamydia Trachomatis. Left untreated these bacteria can cause dibilitating symptoms that mimic MS, CFIDS, Fibromyalgia, Gillian Barre Symdrome and other Auto Immune diseases..I feel that more people need to know about this.I also think more physicians need to be running thse culotures vs bombarding one with antiobiotics when they do not know what pathgen they are treating... PLEASE Google these bacteria. Educate yourselves about them and ask for blood cultures..My Doc says 1-3 years on Azithromyacin.. But it's HOPE and it's also validation. 2I won't get 26 years of my life back but I may feel better. WOW!!! ..

    Contact me by reply if I can clarify anything for you..

    With Hope in Health,

  2. ulala

    ulala New Member

    congratulations on your tenaciousness to get to the bottom of what was wrong with you. I don't think many doctors order a blood culture. It certainly seems to make sense. Have you been to the web site cpnhelp.org? It's a whole site dedicated to C. pneumonie. Many of us have had tests with high titters to c.pneumonie. I have, and doxycycline has helped me a lot but has not made me well. I think yo have to take 3 different antibiotics to eradicate c.pnemonie.

    There's a lab in Arizona called Fry labs and they seem to be doing blood smears for different tick borne diseases.

    Please keep us posted on your protocol and your progress. Godspeed to getting your life back.
  3. Shananegans

    Shananegans New Member

    I was also misdiagnosed with FMS. For 10 years, I too lost my life. Now I am healthy and doing better than I ever could have imagined. I have Celiac disease, not Fibromyalgia.

    I hope you do as well as I am doing. The overuse of these diagnoses needs to stop. Doctors either need to start caring and paying attention or stop being doctors. It's actually quite disturbing the amount of people I have run across that have been misdiagnosed with these syndromes.

    Keep the awareness!
  4. kali_omalley

    kali_omalley New Member

    Thanks very much for your reply, I really do appreciete it. And yes indeed I did find cpnhelp.org a few weeks ago. It has been a tremendous help to me anyway giving me verification of my myriad symptoms.

    I'm having a hard time for all the specialistis who I have on my
    " medical team" to even understand their particular part of this widespread disease. All I can say is that for years and years I KNEW this was not fibromyalgia or CFIDS asnd I too an glad for my tenacious personality.

    Now, to get my Infectious Diseases Doc to understand the protocols and the unique life and die off cycle of this bacteria...

    I'm Hopeful although still feelling really grim.

    Thanks Again :)

  5. kali_omalley

    kali_omalley New Member

    I really appreciete your reply and for your feedback regarding overuse of thse diagnoses. Just think of how the drug companies would have profited, If I'd taken even a 10th of the medications I'd been prescribed ! Instead of taking a simple blood culture, listening to the patient ( wow there's a new one ) so much suffering and loss of quality of life could be avoided.

    I'm glad you got to the root of your problem as well..I look forward to the day that I can say I feel better.. Right now it's pretty grim. Im trying to educate my Infectious Diseases Doc about the CAT (combined antibiotic therapy) that shows the most promise in this bacteria. Ya thi nk I could get him to pay me for all my research???LOL

    Thanks Again,
    In Hope and Health
  6. kali_omalley

    kali_omalley New Member


    You are SOOOO right! When I was much younger in nursing school I learned that there CAN INDEED be serioius infection without fever. I also had Osteomylitis of my jaw 30 years ago and MRSA 5 years ago. Neither time did I run a fever. These Doctors know this. This is not rocket science, and yet they go along in there " happy little boxes" while people loose the quality of their lives. It literally took me 20 years to get someone to run a blood culture. Thats just SICK.

    Better Days Ahead and thanks again Glen.

  7. munch1958

    munch1958 Member

    Congrats! You now have some things to treat and can begin to get well.


    You will find lots of people just like you on the cpn site.

    I've been dealing with Lyme Borreliosis, Bartonella, Babesiosis, Candida, EBV, mycoplasma pneumonia and chlamydia pneumonia. I'm in my 3rd year of Abx and Anti-fungals. Just started AVs for the EBV 6 months ago.

    So hang in there -- it's possible for the Fibro symptoms and muscle pain to GO AWAY. You don't have to live with this crud. Any doctor that tells you that you just have to learn to live with fibro is an ignorant idiot or worse.... I've got some Lyrica for you -- like that's ALL you need to do -- take it and viola you'll be well.

    Get all of your hormones checked too! Just to make sure that the chronic infections that you've had all of these years have not shut off anything important like growth hormone, adrenals or thryoid.

    Also, get a test for hypercoagulation. This is a common problem with many of these infections. The most common test is the MOCHA panel or markers of coagulation.



    Good luck! Expect to feel worse and even worse before you get better. When you find the right Abx you'll feel bad for a few days then start to feel really great.

  8. kali_omalley

    kali_omalley New Member

    Thanks so much for your reply. I woke today feeling particularilly horrible and you helped. See my ID doc Tuesday and I just hope he's willing and knowledgeable enough to do spomeothing other than this Azithromyicin...

    Thanks Again,