Discussion in 'Fibromyalgia Main Forum' started by SoDanca, Jun 3, 2008.

  1. SoDanca

    SoDanca New Member

    Hello Everyone,
    I'm new to this message board. I was diagnosed with CFS (CFIDS) a few days ago. Please allow me to introduce myself and pick your brains for information as I try to wrap my head around this mysterious illness.
    Like many people here, my journey to a diagnosis has been a long, winding one. It started in November 2005, when I came down with the worst cold I have ever gotten in my life! After a few weeks, the runny nose and cough passed, but I was left with an awful sore throat and raspy voice that just wouldn't go away. (I'm sure this story sounds very familiar to those with CFS - I've heard it often starts with a "flu-like viral infection"). I went to an ENT who said I probably had allergies, and put me on prednisone. 2 days later, I ended up in the ER feeling like my throat was closing up. The ER doc put me on even higher doses of prednisone, and sent me home. The prednisone did nothing but make me dizzy, and I couldn't wait to cycle off it. Then, relative calm for the next 3 weeks, except for persistent throat problems. Then, in late January of 2006, the deluge of symptoms began. I'll never forget that day. I was just driving in the car with my husband on a Sunday afternoon, when I began to feel dizzy and off-balance. Along with that, I felt extremely foggy in the head, like I was high or something and could't think straight. Then came the: tingling in my fingers, headaches, sore joints, constochondritis (pain in the chest joints), heart palpitations, etc. And all with that over-arching and persistent fatigue and brain-fog! I ended up having to take short-term disability from work. I've had every test in the book, including:
    - Dizziness: 2 sets of ENG vestibular tests and vestibular rehab therapy
    - Brain: 2 MRI's of the brain, CT scan of my sinuses, skull and cervical ex-rays, and carotid artery tests
    - Heart: "Treadmill" test, EKGs, Holter monitor, echocardiogram, and cardiac CT scan
    - Thyroid blood tests and thyroid ultrasound
    - Chiari Malformation consults with 2 specialists
    - Numerous rounds of allergy tests
    - Rheumatology tests
    - Upper-GI endoscopy and throat exams
    - Full panel of blood tests (twice!), to test for everthing from tuberculosis and Lyme Disease, to autoimmune disease and diabetes.
    ALL OF THE ABOVE TESTS WERE NORMAL! I recently changed primary-care doctors, and my new Primary Care Doctor (PCD) noticed that I had persistent redness and irritation in my upper-nasal passages and fluid in my ears. She was puzzled, because I have no allergies, so she sent me to an ENT doctor. My new ENT sat me down, looked at my entire (long) medical history, examined my ears and throat, and then asked me if I'd ever looked at the possibility of a chronic viral infection or Chronic Fatigue Syndrome. Then, without any prompting from me, he accurately described the onset of my symptoms (the horrible cold virus, sore throat, weakness , etc.) He put me on a 10-day cycle of Acyclovir, and recommended to my PCD start I start treatment for CFS. FINALLY, SOME VALIDATION THAT MY SYMPTOMS ARE REAL, AND THAT I HAVEN'T BEEN NUTS FOR THE PAST 2.5 YEARS!
    I'm still trying to come to terms with having this illness. I'm thankful that my symptoms seem to have stabilized at a somewhat milder level than some other CFS-sufferers. So far, I can still work full-time as an attorney (although, some days, I am flat-lined by the brain-fog). And I can still get out and about, although I get very tired and sore easily.
    My PCD is very well-intentioned, but she readily admits to having limited expertise in treating patients with CFS and similar chronic conditions.
    So, after my long life-story (sorry for spilling my guts!) ...


    I'd prefer to give conventional medicine a shot first, but suggestions of homeopathic practitioners are also very welcome.

    Thanks for listening.
    - Megan.
    [This Message was Edited on 06/03/2008]
  2. mindyandy420

    mindyandy420 New Member


  3. brainfoggy

    brainfoggy New Member

    Hi Megan

    I am being treated at Holtorf Medical Group in Torrance. They are the docs to see and will be able to help you out. Treatment is very expensive, they don't take insurance. As far as conventional meds go these are the guys to see. I take very little pharmaceuticals mostly their own herbal supplements (which are pricey) and bioidentical hormones which they are known for. I have had CFS for a year, and they helped me when I first saw them, but am now sicker than I was then. I am sticking with them for now as I know there is no quick fix for this and it's a long process. They will work with you as far as treatments and testing. Good luck.

  4. Lichu3

    Lichu3 New Member

    I'm not in LA but welcome to the board.

    I'm glad to see that your ENT is knowledgeable about CFS and even somewhat from the viral angle! Good to see a doc who pays attention and that your PCP is trying to help.

    Check into Human herpes virus 6 (HHV-6) and some who are trying antiviral treatments by entering the terms "HHV-6" or "Valcyte" "Valtrex" (both antivirals) in the search box in left upper-hand side. Some antivirals appear to work very well for some folks with CFIDs.
  5. kellyann

    kellyann New Member

    Welcome to the board! I don't know of any doctors for you, but I wanted to say hello!

    Sorry you are sick, but I am glad your doctor gave you the correct diagnosis! Sometimes you can go through doctor after doctor before getting the correct diagnosis.

    Out of curiosity, what type of Lyme Disease test were you given, or do you know?

    Your friend,

  6. SoDanca

    SoDanca New Member

    Thanks for the warm welcome. I don't know exactly what test I had for Lyme. I do remember that it was a blood test, and the term "ELISA" rings a bell. Hope this answers your question.
  7. jasminetee

    jasminetee Member

    Sorry to hear you've come down with CFS as well. Your story certainly sounds familiar.

    It's good that you're still able to work. I don't know of docs down your way but there is a list here that might have someone near you, I don't know if you've checked it or not.

    Personally, the only things that worked for me after trying various protocols and Valcyte are herbal teas like Throat Coat and Chamomile and Psyllium for IBS. However, I'm an old timer and you just caught this the last couple of years so you may find treatments that help bring your symptoms(Sx) down.

    Dr. Montoya of Stanford U is going to be presenting his findings on Valcyte later in June, around the 19 or so. You may want to read about that when it comes out. Some people have responded very well to it.

  8. LenoreR

    LenoreR New Member

    Hi Megan and welcome!!!!!!

    I am an attorney too but had to give up practicing because of the DDs. Kudos to you for the ability to keep going!

    I am being treated by Dr. Jeffrey Galpin in Tarzana. His practice is about 10% CFS patients. He has post polio syndrome himself, so he understands pain, etc similar to CFS. He has also been treating HIV patients for over 25 years, who have similar symptoms. Look in the search box for Galpin and you'll see another thread about him. Also check him out on

    Good luck to you,
  9. kellyann

    kellyann New Member

    The Elisa test is worthless. It really is not a good test for Lyme Disease. If I were you I would get tested again and this time insist on a Western Blot test. It is very important. So many with CFS, and FM turn out to really have Lyme disease which can be treated with antibiotics.
    I was very surprised myself when I tested positive for Lyme Disease. I had never even given it much thought. But then I started reading the list of symptoms and it all started to make sense, finally after so many years of suffering. I am now on antibiotics, it may take awhile for me to get better because I have been sick for so long.
    Anyway, I hope you get the help you need and it doesn't take you years and years to do so!

    Your Friend!

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