Maybe someone could explain????

Discussion in 'Fibromyalgia Main Forum' started by carouselsb3, Jan 9, 2007.

  1. carouselsb3

    carouselsb3 New Member

    Hi all...I have posted before, my 9 year old daughter was diagnosed with CFIDS.

    We went to the pediatric neurologist on Monday for a follow up visit. He had run a bunch of lab work on her prior to the visit. He said some of the rare diseases that he tested her for (just on the off chance that she was suffering from something bizzare) all came back negitive. One thing he did mention what that her Epstein-Barr virus titer was extremely high.

    He didnt go on to explain this, but then talked more about transfering her care to a pediatric neurologist at Cleveland Clinic. He said that about 1-2 cases a year he feels that he cannot do anything further and that this was the best he could recomend.

    He also wants a follow up with him next Monday, and we are headed off to Cleveland next Friday!

    Thanks for all your help,
    Sandra & Kathryn
  2. u34rb

    u34rb New Member

    The pediatric neurologist is saying that your daugter's got an active infection called Epstein-Barr virus (EBV). It's a type of human herpes virus, (HHV). It's commonly contracted when young.

    About 80 - 90% of the population get it at some time. It's rarely fatal. You would more likely than not test positive for having had it. So if she is being refered to a specialist then she should recover soon.
  3. u34rb

    u34rb New Member

    MCD56,

    I would suggest that when carouselsb3 says that her daughter's "Epstein-Barr virus titre was extremely high", that she is referring to the viral load of an active infection, presumably established by a PCR assay. And not to the values of IgM and IgG, which would only indicate the presence of antigens indicating past or present infection, without any expression of severity.

    An active infection would account for the symptoms of CFS.
  4. AllWXRider

    AllWXRider New Member

    The doc is probably talking about a Chronic infection. Active EBV causes Infectious Mononucleosis "Mono". Swollen lymph nodes and spleen, extreme fatigue.

    Chronic may only exibit fatigue. When I started taking Transfer Factors [Prohealth's TF System 100], I got the "active" symptoms big time. We call it herxing. Transfer Factors paint targets on the virus so the white blood cells can engulf these bugs.

    My neurologist did MRI brain scans. Called my condition probably viral and sent me back to my regular doctor. Neurologists don't treat viruses.

    See if there is a D.O. on your insurance plan. An M.D. won't treat EBV since there is no cookbook, standarized treatment. Armed only with a prescription pad, he can't help you...sorry, but BEEN there, tried that.
  5. connieaag

    connieaag New Member

    My daughter, Kathryn, was referred to Riley Children's Hospital in Indy after her doc couldn't figure out anything and she continued with the 'mono-like" infection. She first saw an Infectious Disease doc, then 3 months later was dx'd with FM/CFS by a Rheumotologist at Riley.

    Although she made the dx, she basically said she would have to live with it since there wasn't much 'approved' for children. Since then, I found she also told that to AT LEAST two other families with the same situation.

    I think Children's Hospitals are great for childhood diseases, but some MAY NOT consider this a CHILDHOOD DISEASE or be willing to treat it aggressively.

    Long of it --we now see a WONDERFUL family practitioner to treat her. We, and the other families I mentioned, wouldm't take 'live with it' as an answer for our children from the so-called SPECIALISTS.

    Good luck, and keep us posted. I am always interested in what other docs say abou children with this.

    Connie
  6. u34rb

    u34rb New Member

    MCD56: I understand that “titre” means a measurable value. So I would understand that “Epstein-Barr virus titre” means ‘virus value’ or ‘virus expresssion’; what I call the viral load. If it meant the IgM and IgG values then wouldn’t it be called the ‘Ig titres’, or ‘antigen titres’.

    Allwxrider: carouselsb3 hasn’t said that the referral to a neurologist was to treat the virus. Maybe it was to consider the neurological implications?