info for sujay: ADHD=CFIDS

Discussion in 'Fibromyalgia Main Forum' started by sb439, Jun 4, 2003.

  1. sb439

    sb439 New Member

    This was posted a while ago. I asked for the source, but never found out. Susanne



    "the syndrome results from dysfunction in a system of bilateral neural structures that includes the ring of mesolimbic cortex located in the mesial frontal and temporal lobes, the neostriatum, and the anterior and medial nuclear groups of the thalamus." (Noteworthy, is that much emphasis is put on the medial temporal lobe).

    In adolescents and adults, this dysfunction may manifest itself as CFIDS (Chronic Fatigue Immune Dysfunction Syndrome), ADHD, and various other atypical auto-immune disorders associated with neuro-immune dysfunction. In older children, it is seen as variants of ADD (Attention Deficit Disorder) / ADHD. And in younger children/infants, it appears as autism, autistic syndrome and PDD (Pervasive Development Disorder).
    One patient had high serum herpes simplex titers.

    Schizophrenia is another--where temporal lobe dysfunction is found.
  2. sb439

    sb439 New Member

    Dr Myra Preston & co at siberimaging do neurofeedback with people with CFIDS, autism, ADD and ADHD, and their brain pattern is, they say, similar in its dysfunction, CFIDS, however (unfortunately) being by far the worst. (I got this orally, from her assistant.)
  3. sujay

    sujay New Member

    Thanks so much for tracking that down for me. I'm going to get lazy with other people doing so much work for me. I'd heard about the connection with autism/PDD, and had caught rumors about the connection with schizophrenia, but the ADD just hit me because people talking about brain fog seemed to be describing something with which I was very familiar, haveing struggled with it most of my life. I should put in a plug for QEEG treatment, as I think it really helped me, though the nutritional supplements (and improved circulation) probably play a big role, too. (I wonder how much of that neuro-immune dysfunction might be due to hypercoagulation and proor circulation.)

    I see you teach philosophy. I graduated from St. John's College (in Annapolis) a long time ago. I find that the education I managed to get there really helps me keep things in perspective, and I know it has helped me confidently keep asking questions and trying to figure things out even if they aren't in my field (whicn has been life-saving.) I can't imagine wrapping my mind around Hobbes or Kant any more, though I have developed an appetite for history, so who knows what I could do? First things first, though, and right now that means scrounging something up for dinner. My 12-year-old is growing so fast I worry that I won't recognize him when he comes home from school at the end of the day. I've found I have to start throwing food into his mouth as fast as I can as soon as he walks through the door. Well, the philosophy books will still be there when he's grown and out of the house, and I believe his grandmother when she tells me I'll miss these crazy times. I hope you have all kinds of comforts like I do. This disease can be really isolating, and I think that's the hardest part to take.

    Thanks for sharing,
  4. AnnG

    AnnG New Member

    I came on tonight because I just couldn't handle my darling 17 yr old ADD son anymore and needed a break. I was wondering how many people here have a history of ADD in their family and I found this thread.

    I am reading a great book right now called:"Teenagers with ADD, a parents' guide". On page 14 there is a photo of a PET scan on a non-ADD adult and an ADD adult brain. Although both "brains" performed the tasks equally well, the non-ADD brain shows over 20 white high brain activity areas compared to ONE WHITE AREA IN THE ADD BRAIN. Think how brilliant the ADD group would be if we used more of our brains like the "normals"!

    So many of us here use a stimulant med that I wondered what the connection is! And, to those of us raising ADD kids, bless us, bless us, bless us! I've never done anything harder in my life!
  5. Plantscaper

    Plantscaper New Member

    I responded to stimulant medication in the paradoxical way one is suppose to respond, if one has ADD..Cylert helped me to some extent for a year or so..but then, seemed to stop working well for me..

    Well, then, I read what Dr. Cheney indicates about stimulants, that one could further damage an already compromised brain, so I did not pursue it farther...Do you, Sujay, feel the same as Dr. Cheney, or that one should pursue treatment for ADD if you have ADD and CFS..or might they be one in the same?
  6. sb439

    sb439 New Member

    I enjoyed reading your reply. So you had neurofeedback treatment, too. I slowly start believing that it helps me (I'm a sceptic by nature and profession), but don't want to sing its praises on the board before I haven't made some more progress.

    Yes, I believe an education in the humanities tends to make doctors better doctors in many respects. I have difficulties reading Kant these days, too (though I used to publish on his philosophy), and am facing disability, which I really don't want, but it seems there is no choice. And how right you are about the isolation. I can't be in places with background noise/music since my left temporal lobe has given up its ghost, and that rules out almost all public meeting places these days, moreover can't see people for more than an hour, otherwise I develop pain, and few people understand that. My old friends, who do understand, as they know me from when I was healthy, are all in the UK and Europe. But I do have "all kinds of comfort", mainly because I have educated myself taking comfort in lonesome activities, and then there is the 11 year old cat (not quite as comforting I imagine, as a 12 year old son, but still great company.)
    All the best,
  7. sujay

    sujay New Member

    plantscaper - ADD, CFS or Are they one in the same?

    I've only just started thinking about this, but here are my thoughts. I suspect both conditions may be caused by reduced blood flow to the brain, and perhaps people with ADD (or family histories) may be more at risk for CFS. People with ADD don't have sore throats or fevers or swollen glands as part of the syndrome; they just seem to have the same type of "brain fog". I'm not sure where these speculations should/will take us, but it sure is an interesting topic.
  8. Plantscaper

    Plantscaper New Member

    Whereas, Dr. Cheney totally is against use of Stimulants with CFS, indicating it would be harming a compromised brain that tends towards slight seizure state..I have read other doctor's opinions that suggest their use, as more helpful than harmful..recently read an opinion that indicated stimulants would not do what Cheney suggested..

    What do you think as regards this matter? I don't understand why the Cylert stopped working for me, but wondered if it would be wise to look for other alternatives..Do you know about Strattera, or some other stimulant?

    Thanks for any help...
  9. Mikie

    Mikie Moderator

    I now know that I had ADHD as a child. One of my daughters did as well. My other daughter had annorexia, which is being looked at as possibly being connected to our illnesses. Both have FMS.

    Love, Mikie
  10. sb439

    sb439 New Member

    ... is a NON-STIMULANT norepinephrine reuptake inhibitor which "works differently from the other ADHD medications available".
    I asked my doctor to prescribe it to me for that reason (i.e. it seems not to fall into the class of stimulants, although Cheney may of course have other reasons against this one too (there are many ways to fry one's brain ...).
    Also, Strattera comes in small doses, so you can experiment with what's right for you. (I have 10mg capsules at home now, but haven't started yet, as I have just started the Naltrexone, and two new meds at the same time are generally a bad idea.)
    My doctor emphasizes that Strattera (like all norepinephrine reuptake inhibitors and all similar brain meds) is in the category of 'band-aids', i.e. it doesn't make you any better, but has an effect just during the time when you take it. (Takes some weeks for the effect to show, though.)
    [This Message was Edited on 06/06/2003]