Question for Jellybelly

Discussion in 'Fibromyalgia Main Forum' started by Sindy-Uk, May 4, 2003.

  1. Sindy-Uk

    Sindy-Uk New Member

    Hi jellybelly,

    I just wanted to know is it too late to do a bio now? I presume it is. I have been seeing your thread and I think it is such a wonderful thing you are doing. I just have not been feeling well enough lately to do it.

  2. sujay

    sujay New Member

    Hi Satin,

    I'm not Jellybelly, but I can't figure out how to post my own message, so I hope it's OK with you if I tag along.

    I'm trying to get hold of her because I see she's got ISAC and mycoplasma. I'm a Family Physician in Western Washington and have had good results identifying and treating those problems in my own patients, but I'm having trouble finding a doctor who's willing to treat me and my 12 year old son.

    I think a lot of FM/CFS patients like Jellybelly and I have a variant of a coagulopathy first described as Anti-phospholipid Antibody Syndrome by Dr. Graham Hughes (in the UK) back in the early 1980s. Since you live in the UK you might have an easier time following up on this, and I hope your doctors have tested you. It's also known as Sticky Blood Syndrome, and has been associated with infertility, among a host of other nasty problems, including seizures and strokes.

    At least those are problems that you'd think doctors wouldn't be able to ignore. Maybe we CSFers just aren't dramatic enough (or we're just too tired!) to really get our doctors' attention. It looks a whole lot different from the other side; I know I've gotten a lot more insight and support from fellow patients than from my medical colleagues.

    I'd like to work to change that, but I've got to figure out how to get better myself before I'll be much help. I'd like to get involved in research, but I've had to close my practice to new patients (except for consults from other physicians) until both my son and I have recovered completely. I've learned a lot, but some of the things that I think need to be done need to be ordered by another licensed health practitioner, as I can't ethically treat my son or myself.

    I hope you feel better soon. Above all don't give up hope. I have been amazed at all the research that IS being done by concerned and conscientious doctors, and I've seen a lot of good tips on this board, even though I've only been viewing it for a short time. Be sure to check things out with your own doctor before you try anything new. Even if he doesn't agree with you, he should know what you're up to, and have an opportunity to give you his opinion. None of us physicians know everything (though some of us seem to have a hard time acknowledging that) but he's spent a big part of his life learning what will help you, and he may be willing to learn more with your help and encouragement.

    Thanks for helping me get my message through to Jellybelly.

    Best wishes,

  3. Sindy-Uk

    Sindy-Uk New Member

    Jelly- thanks I will do my bio now.
    Sujay- I asked my current CFS specialist, whether I might have hypercoagulation problem and if I could have the test. He said he could see when he did the live blood analysis, that I did have this problem. He thinks it is probably the mycoplasma infection that is causing this. He is treating me with dioxychlor/sulfoxime infusions for this. If they don't work then I might have to try the antibiotic therapy. I do feel that this was the cause of my unexplained infertility. Anyhow, I think I will inquire about the ISAC test and see if I can have it done.

  4. sujay

    sujay New Member

    Thanks so much for responding to me. I knew you would. George MacDonald said "Few delights can equal the mere presence of one whom we trust utterly." Thanks also to the people who run this message board so we can be present for each other.

    I think I will ask Madwolf if he'd be willing to treat me and my son. We're both doing pretty well right now, and I truly am grateful for all my blessings, but I want to get this mycoplasma (and any of its friends) OUT OF MY HOUSE.

    Did you get your testing done through Hemex Labs? I have a lot of difficulty negotiating their website, but Dave Berg is a real sweetheart, and never seems aggravated when I drag him to the phone with another question.

    Oh, and of course I see that button now. Did I mention I also have ADHD? I can't use that as an excuse much anymore, as my original CFS doc sent me for QEEG. (Wasn't much else I could do at the time, so I thought I'd give it a shot. G-d works in mysterious ways. I just pray I'll notice when He's trying to alert me to opportunities to receive His grace.)

    I'm looking forward to seeing what you come up with next. Sending the bios out seems like a great idea, and we all appreciate the effort you put in to make it work. I would like to have a chance to talk to your doctor, 'cause I've still got a lot to learn. Could you give me his name and number, or would he rather I communicate with him by email? Thanks for helping me get in touch with him.

    Thanks again. Be well.

  5. sujay

    sujay New Member

    We use a test called an ISAC panel. It's done at a lab in Phoenix, Arizona, so the blood has to be frozen and air-lifted after it's prepared (which is a time-consuming operation). I think it's worth it, though, because we get a lot of very helpful information in terms of directing treatment. Dave Berg, the Director, will be happy to talk to your doctor. He had to do a lot of explaining to me when I first started ordering the test, and I was amazed by how much he could tell from the results. I don't have access to live blood analysis, though I've seen it demonstrated, and it's really intriguing. I don't think it gives as much direction about where to go with therapy, but I suspect it might be helpful as a way to monitor your response to therapy in a timely manner; it might be less expensive, too.

    I've got sticky blood and mycoplasma, too, so I'd love to share notes about what you've tried and how you responded. I seem to be getting addicted to this, and I'm figuiring out how to maneuver around, so I should be able to get back to you soon. Let me know if you want any further information.