CFS and CFIDS different?

Discussion in 'Fibromyalgia Main Forum' started by Renae 2, Sep 20, 2003.

  1. Renae 2

    Renae 2 New Member

    We took daughter to Dr. W., specializing in immunology, infectious disease, and he would take you if other doctors can't figure out your problem. He claims to understand and help CFIDS. When tests results didn't show what he was looking for (certain immune problems), he totally didn't understand my daughter and treated her unkindly. He said her not looking at him attentively was because she was tired of doctors, and she had better talk! I told him she has visual disturbance, cognitive difficulty and terrible nausea that was heightened by just walking to his office, that she isn't against him!! He thought the irritable bowel was a separate issue. If anything, he said, her body seems to be fighting! (He never said, that this too could be a problem of her body fighting even if the enemy is gone, but I think this occurs with some patients.) Because the tests didn't show what he was looking for, He said she doesn't have a TRUE case!! I disagree!

    A psychiatrist afterward told us the immune system along with the Brain (limbic, etc) & Central nerveous system, etc is all dysregulated with a "post-viral syndrome" (his diagnosis of her)and tests just don't reveal it. I agree! Based on British sites and other articles I've read, M.E. or CFS is like that, without physical test findings, and I read that irritable bowel,nausea, visual and other sensory disturbance goes along with it. That's my daughter's form of CFS!!!

    Therefore, can we conclude that CFIDS and CFS are two separate but similar conditions, with CFS being more brain & CNS based and CFIDS being more immune based?
  2. Renae 2

    Renae 2 New Member

    How do you treat my daughter's form of CFS?
    The psychiatrist says "nutrition", drink lots of water, etc.and make the body less acidic and try to achieve homeostasis.

    I hear that antidepressants exaserbate symptoms. D just tried Lexapro last month, one day, and got worse (effects continue).She tried Celexa over a year ago and side effects were bad. She took Paxil for several months and we're not sure how much it helped and if it was one of several possible triggers to make her worse now. My x-H has her trying a dietary supplement called PS 100 (phosphatidyl serine)...and I don't see results.

    She has never been to a rheumatologist; how could he help? Isn't that for inflammation, or can he help if the muscles ache because of sleep disturbance?

    Should she see a sleep specialist? Can he help?

    Does a naturopathic/homeopathic dr. test for what your body needs nutritionally to heal? Or should I take D to the nutritionist for autoimmune diseases that I found?

    The psychiatrist wants her to try homebound school, but D is afraid she can't do it with all her cognitive, depression, and other problems. She crashed and couldn't complete school last year and has alot of grief about that. Actually, she's missed too much school, so they might prep. her for a GED. and let her graduate that way eventually.

    Any advice would be appreciated!

    [This Message was Edited on 09/20/2003]
  3. kalina

    kalina New Member

    Hi, Renae, and welcome to the board!

    CFS and CFIDS are the same thing. I can't make a diagnosis, but it does sound like your daughter has many of the symptoms. (Irritable bowel isn't part of the diagnostic criteria, but it is NOT a separate issue.) How long has your daughter had these symptoms? Was onset sudden or gradual?

    Can you tell us what kind of tests the first doctor ran on your daughter? We are all so different, and what doesn't show up on one test may show up on another, depending on what has triggered her illness. For example, if her illness was triggered by a virus, there is a test that can identify it.

    Your daughter is very lucky to have your support.

  4. annepat

    annepat New Member


    Please also tell us which labs were used, and tell us if the testing was PCR testing.

  5. Renae 2

    Renae 2 New Member

    Gradual!... from 6th grade until now at age 16.

    It all started with a stomach virus...rough vomitting, etc. Feb. 1999. For months she had alternating days of diarrhea & constipation. By Aug. she had spells of gagging lasting as long as an hour. We urged the doctors to do exploratory surgery, and the surgeon said it is very common after a severe virus to have ongoing symptoms from the appendix...and sure enough, they removed it and she was better! But 2 weeks later, nausea came back and has never left.

    She has gone through the medical system, ruling out all conditions....

    After reading an article this summer, I asked her pediatrician to test for mycoplasmic blood infection, and YES, she did have that though it is not active now. I suspect this caused or contributed to her CFS. What test do you recommend?

    [This Message was Edited on 09/20/2003]
  6. Renae 2

    Renae 2 New Member


    I don't have all the lab names in my memory, but the immunologist looked at her history and wanted to use a different lab. He claims that he covered all the bases, but after the way he mistreated D, I think he doesn't know everything.

    Could you tell me which lab and test might be helpful?

    There have been so many tests, I can't remember PCR (what is that?)[This Message was Edited on 09/20/2003]
    [This Message was Edited on 09/20/2003]
  7. Hinemoa

    Hinemoa New Member

    who claimed to know about CFS/FM but didn't really.

    One doctor on learning that I was on pain meds, (very mild ones) told me to stop taking them because CFS is not about pain, it's about fatigue. And that was really the only symptom she wanted to address.

    My long-time and much lamented, retired Dr. took regular and complete LIVER FUNCTION tests. There are several results that show up, after a few years, that are peculiar to CFS/FM.

    I'm afraid that the CDC diagnostic requirements are sadly lacking and restrictive. Your whole system tends to be out of whack and all sorts of problems can be part of the over-all picture.

    I've found a Dr. that is kind and willing to work with me even though this is not his field.

  8. annepat

    annepat New Member

    Pretty foggy today, so bear with me.

    PCR is polymerase chain reaction-it splices a small portion of dna and then amplifies the replication of the DNA splices

    There are several different tyes of Mycoplasma species, and strains can develop within the various species. Myco. is very difficult to diagnose and difficult to treat because some of the species lack cell walls.

    The species also tend to be anarobes, and enjoy hiding out in the nervous system. It is also common to have Myco co-infections.

    This site has several excellent Myco articles-I would print them for your physician. Nicolson does great testing-but I kn ow thta although I have a PPO, my health insurer won't reimburse appropriately (maybe that's why thye are being sued by the AMA). I used Mayo clinics PCR Myco pneu.testing, and based on previous ABX and +tests, I was clinically diagnosed w/co-infections.

    For viral titers and NK cells, AAL eference labs in CA is good, and tghey accept lots of insurnace co.'s. Immunescience is also good and particiaptes w/some PPO's. Make sure thta you check on health insurance reimbursement BEFORE the test.

    Have you also been tested for Lyme by IGeneX and C. pneumonia by PCR? Chronic Strep also attacks us frequently.

  9. Renae 2

    Renae 2 New Member

    info about Nicholson, asked our pediatrician to test to see if my daughter has/had mycoplasmic blood infection. He said she HAD it but not active now. I read that 60% of folks with CFS have had it.