Got my hypercoagulation test results, now I need HTRP

Discussion in 'Fibromyalgia Main Forum' started by kalina, May 8, 2003.

  1. kalina

    kalina New Member

    My endocrinologist submitted samples to HEMEXto run an ISAC panel to confirm suspected hypercoagulation. Well, the results are back. A nurse called last week to tell me the results were "VERY abnormal" and that my doc wants permission to run another test by HEMEX, the HTRP (Hereditary Thrombosis Risk Panel).

    This is a very expensive test, but I told her to go ahead with it. I've done some more research since then, and I hope I did the right thing. The problem is that I cannot talk with my doctor about what the ISAC test results show so far until my next appointment, three weeks from today (office policy).

    From what I have read so far, I am assuming this is only the beginning of a barrage of tests to determine exactly what is causing the hypercoagulation.

    If anyone else who has been through all this testing can tell me what I can expect, I would appreciate any advice.

    Kalina
  2. sujay

    sujay New Member

    You're lucky you've found a doctor to look into this for you. I'm a family physician who had this same testing done when I realized I was having the same symptoms as my FM/CFS patients. Dave Berg, the director of the lab, was wonderful about answering all my questions, and I know he'll be just as helpful to your doctor. (He's got an interview on file in the archives on this site.) You might also pick up some useful information by running a search on ISAC on this site. If it's too confusing you can just wait until you see your doctor, but he should have a lot of useful information for you when you see him again.

    I had to close my office for 4 months when I first realized I was ill. It's been a struggle ever since, and I still don't feel I've completely recovered, but my practice is going again, and my 12 year old son (who also became ill and missed nearly 4 months of school last year) is running and playing basketball and riding his bike as much as he wants. (It was particularly scary when his fibro was so bad he couldn't even walk, and I'd have to carry him out to the car and drag him into my office because I was scared to leave him home alone.) I'm convinced that those days are definitely behind us now, and I hope you will find your way to recovery soon, too. Hang in there! Let me know if you have any more questions for me. I'll try to help out however I can.

    Best Wishes,
    Sujay
  3. kalina

    kalina New Member

    This is incredible. For the first time in five years, I'm really stoked about the possibility of getting better. I think the treatment could very well be the closest thing a lot of us have to a "magic bullet" at this point. It would certainly explain all the strange test results I've been getting (and the great difficulty the nurses have had just getting enough blood to test).

    After reading the hypercoagulation interview with David Berg posted on this site several weeks ago, I had to show it to my husband -- it was like a piece of the puzzle fell into place for me. But I must have been really brainfogged because by the time my last doc appointment rolled around, it had slipped my mind, and I had forgotten to add any mention of it to my notes. Fortunately my hubby was there with me, and he remembered to bring it up (he does come in handy sometimes). Now that the results are back and they're positive, he is so proud of himself! Of course he deserves all the credit if this proves to be the answer. :)

    Yes, I am very lucky to have a doctor who is willing to look into this. She doesn’t have a lot of experience with CFIDS/FM, so there are times I wonder if I should try to find a specialist. But she is willing to think outside the box and seems to be doing all the right tests. I also feel that she truly cares about doing whatever it takes to help me. I know that she's had a detailed conversation with David Berg at HEMEX about my case.

    I tried to search through some of the older posts that I hadn't seen yet, but I was having a hard time reading them all. I did see some of your wonderful explanations that helped me to understand more about this condition. I've been to the HEMEX web site too, and I'll continue to do more research. But I still have some questions that I hope you won't mind answering where your experience comes in.

    Jelly, you said I cold probably hold off on the HTRP for now. Unfortunately, it's too late, since I already gave them the green light to proceed earlier this week. Now I'm second-guessing my decision, even though it was David Berg who suggested it. I just wish I could have had more information on the ISAC results, and to know the reasons why it was decided this particular panel was needed. The nurse I talked to said it was to determine treatment. Does that make sense? I know you've tested positive for mycoplasma. Did you have the HTRP before you found the myco's? Is heparin the only thing you're taking for this? I'm really encouraged to know that it's working for you. Great news about the nasal spray, too!

    Anybody: The recent article I read on the possible harmful effects of heparin is another thing that concerns me -- what is your opinion on this? The cost is another matter. It sounds expensive, and my insurance coverage for meds is the pits. Can you tell me how much a month's supply costs? This will all have to come out of my pocket for the rest of 2003, so I'd like to know if I need to start selling off the family heirlooms... if I can find any.

    Sujay, are you and your son both using heparin? If so, do you think that's the main reason you've improved after four months? What type of symptom relief did you get? My primary symptoms are fatigue, cold sensitivity, cognitive and sleep problems. I was one who was hit very suddenly with this DD, and I remember how scary it was. I can't imagine what it must have been like with you and your son both ill at the same time! I'm so glad to know you're both feeling better.

    Sorry for writing a novel with so many questions, but I'm just so excited about the potential for improvement here, and just want to learn as much as I can about this before I go in for my next appointment on the 29th so I can make some informed decisions. Thanks again! I appreciate your input!

    Kalina
  4. sujay

    sujay New Member

    Neither my son nor I have used much heparin, mostly because I've had a hard time finding a doctor who would prescribe it (and I'm not sure my 12-year-old would take it). I did use it briefly during a recent flare, when I noticed I was getting run-down again; I think it was tremendously helpful . I had similar symptoms to yours (fatigue, cold sensitivity, cognitive and sleep problems), but now manage to keep them under control most of the time. Red flags I've learned to watch for include a scratchy sore throat, then low back pain, and a weary feeling in my back that's hard to explain, but makes me feel like my back is too tired to sit up. This sounds petty compared to what a lot of other people have to deal with, but I won't feel I've conquered this illness until ALL my symptoms resolve.

    Regular aerobic exercise is about the only thing that doctors agree seems to consistently help people with chronic fatigue. Problem is, a lot of us with more severe illness aren't in any position to get out of bed at times, let alone consider exercise beyond the very minimum required to maintain life (get to the dinner table, etc., even if someone else does the cooking. Ever been so tired you couldn't even lift a fork to your mouth?) Of course, the CDC Guidelines allow a lot of other overlapping syndromes in the door, and that may also skew results of these studies (that show regular exercise helps). However, I'm convinced that ANYTHING that improves circulation may help our condition since I believe impaired circulation (and reduced transfer of oxygen and other nutrients) is responsible for a lot of our symptoms; also, many of the pathogens that may play a role in stimulating the coagulation system to overproduce proteins that gum up the works thrive in a low oxygen environment. Exposing them to oxygen (and white blood cells and other components of the immune system) is probably a good thing.

    People with ME/CFS (and FM) need to be careful nor to overdue exercise or physical activity (not to mention other sources of stress!) However, I am convinced that regular aerobic activity can be tremendously helpful. When I first realized I was ill there were severeal weeks that I was barely able to get out of bed. (In fact, I learned how it felt to barely be able to lift an eyebrow.) When I fist started exercising it was limited to 5-minute sessions of walking in place by my bed (so I'd have a soft place to fall.) These sessions were initially followed by kup to 4 hours of complete exhastion. Gradually (and with the hwlp of a walking partner who has become a dear friend) I was able to work up to 45 minutes of brisk walking followed by no more than 30 minutes in bed. I reached that point about 4 months after I first realized was ill, and that's when I was able to reopen my medical practice, though only on a part-time basis.

    That being said, I've used a lot of bromelain. That, along with colostrum and REGULAR physical exercise (that's the part that comes easily for my son) have been the mainstay of my treatment. He also uses colostrum (and reminds me to dose us before bed, when sometimes all I can think about is my pillow). He has more GI complaints, and relies on probiotics to keep those under control. Our HTRPs showed that we have more of a problem with excess prothrombin production, so when I can find someone who'll get serious about tackling our mycoplasma infections, I'm hoping he'll also consider using lumbrokinase (which I prefer to nattokinase because it has extravascular as well as intravascular activity). I'll probably want to go on low-dose heparin as well, because as pathogens get uncovered we may get into more trouble with soluble fibrin monomer deposition, and our symptoms might get worse.

    Well, you can probably see it's pretty complicated. Don't worry if you don't understand all the technical details right away. Some of the main points I try to get across to my patients are:
    1. You need to work closely with your doctor.
    2. Properly balanced nutritional support is essential.
    3. Regular aerobic exercise is tricky but invaluable.
    4. You must patiently and persistently advocate for
    yourself and your loved ones.
    5. You must NEVER GIVE UP HOPE.

    Dave Berg will continue to be a good resource for you and your doctor; working together I'm confident you'll be able to make progress. I'll look forward to seeing where you go from here.

    Love and peace,
    Sujay
  5. sujay

    sujay New Member

    Where do you get your heparin? Sounds like a reasonable cost, if the bottle lasts all month. We have a compounding pharmacist up here, but I'd like more information before I talk to him. Also, any chance you could arrange for me to talk to your doctor? (I've been trying to get Dave Berg to set up a messageboard for treating physicians, but I don't think he's done that yet.) Thanks, Sujay.
  6. kalina

    kalina New Member

    I'm bumping this up for for Jelly regarding Sujay's question.

    Yes, $45/mo. for the Heparin is very reasonable. I was afraid it was going to be a lot more! I'm going to make sure my doc knows about the compounded nose spray.

    I appreciate all the info, you two. I can hardly wait to find out exactly what my ISAC and HTRP test results reveal. I'll keep you posted. Thanks!!

    Kalina