YES! Hypercoagulation test results back! Starting heparin!

Discussion in 'Fibromyalgia Main Forum' started by kalina, Jun 1, 2003.

  1. kalina

    kalina New Member

    Hi, all. I haven't been posting much lately because I've been flaring for the last few weeks, but I such good news I have to share!

    I was just tested by HEMEX Laboratories (ISAC and HTRP test panels) for hypercoagulation. Something clicked when I read the article about HEMEX and director/cofounder David Berg in the library section of this site, and when I mentioned it to my doctor, she agreed that we should do the tests.

    After what seemed like forever, I finally got a chance to sit down and talk to my doctor about all the results last Thursday. Dr Berg had consulted with my doc regarding my case. Dr Berg said that my test showed "THE MOST ABNORMAL RESULTS HE HAS EVER SEEN." Well... that would certainly explain a lot of things!

    So beginning Thursday, I've been giving myself injections of heparin twice a day. I was really hoping I could use the nasal spray form, but since my case is so severe my doc says I have to "stick" with the injections, at least for a while. I'll also be adding lumbrokinase later this week in addition to the heparin.

    My doc said that sometime in the next 1-3 weeks, the effects of the Heparin and lumbrokinase will cause my symptoms to become worse (!) because the pathogens will have no place left to hide, and I will start Herxing. When that happens, I have to go back in for yet another test panel, and the lab will then try to identify those pathogens so we can find a way to eradicate them. Whoo-hoo! We have a plan of attack!

    As far as I know, Jellybelly is the only other person on this board who has been on heparin therapy for hypercoagulation. (If there's anyone else here, I'd really like to hear about your experience!) I believe she said she began to feel better after a couple of days, but if anything, so far the heparin has only made me more tired. I'm not supposed to start Herxing yet, but the last few days I've been sleeping a LOT. Maybe it's just because I'm starting this on top of a flare.

    Hey, if I have to feel worse knowing that I will eventually feel better, I can deal with that. I am SO excited about this, and the possibility of getting my life back! There IS HOPE!

    Kalina
  2. Applyn59

    Applyn59 New Member

    Hi Kalina!

    Wow- that is great. I can tell how excited you are
    by your enthusiasm in the post. I want to get
    checked for this, too, but doubt my dr. will go for it.
    However, maybe he will.

    What was it that made you and your dr. think it could
    be your problem? I know they say many of us have
    this problem - was that the only basis for the test.
    What kind of dr. is she? Sorry to pick your brain.
    Was it hard to convince your dr? Did she know about
    the problem or did you bring her attention to it?
    Thanks and good luck!
    I will be reading your future posts with much
    interest.

    Lynn
    The one with the low growth hormone! LOL
  3. Princessraye

    Princessraye New Member

    I do hope this is your answer and you will be getting back to feeling good soon. I would also like to know the answers to the questions Aplyn59 asked !
  4. sofy

    sofy New Member

    It is so wonderful they have found something real to treat. Now lets just hope you start to feel as good as our Jelly.
  5. tansy

    tansy New Member

    Thanks for this info. First jellybelly then sujay really worked at getting me to see and understand this problem; with my history too, it really is important to get it checked out.

    I live in the UK so have e-mailed Hemex to see about the tests. A few indicators might be available through my GP, just hope she takes it on board when I see her on Wednesday.

    For me this is the only explanation as to why despite everything I went seriously downhill 5 years ago and why I'm not responding to diet, supplements etc.

    Please do keep us up informed as to how it goes.

    Cheers

    Tansy


    [This Message was Edited on 06/02/2003]
  6. bluejai

    bluejai New Member

    Hi -
    I have a coagulation issue as well, and after those tests came back, the haematologist requested a DNA test to check for genetic factors ( I have two different ones against me in the clotting dept.)

    I was on heparin injections until I got stabilized but now I am on warfarin and get my blood checked once a month.

    Just wondering why heparin for long-term therapy?

    Jai
  7. scottabir

    scottabir New Member

    once on heparin than eventually coumadin because my tests from Hemex came back abnormal. This was back in 1999. Now I have moved to another state and my Drs here REFUSE to put me back on. I have been to 4 Drs in all different specialties and not one of them will put me back on the blood thinners. They don't seem to care that I felt better.

    Congrats to you! I hope you have wonderful success!
    Abi
  8. Applyn59

    Applyn59 New Member

    bumping for more specifics from Kalina or Tansy
    Why to think it could be the problem????
  9. kalina

    kalina New Member

    Hi, Lynn and Princess! :) I don't mind answering your questions:

    *What was it that made you and your dr. think it could be your problem?* All my hormone levels -- estrogen, testosterone, DHEA… -- that have been tested are low, and they are barely responding to supplementation. I have frequent chronic infections, or sometimes only symptoms of chronic infections, that do not respond to treatment. I have a pituitary condition called hyperprolactinemia that has not responded to treatment. I have hot/cold flashes, chronic migraines and IBS, and I'm losing hair. I learned that these are all symptoms of hypercoagulation. I've also had tests in the past that indicate that my immune system is overactivated, and my EBV (one of the pathogens that could be responsible for activation of the immune system and hypercoagulation) was positive.

    *What kind of dr. is she?* She is an internist and board-certified endocrinologist.

    *Was it hard to convince your dr? Did she know about the problem or did you bring her attention to it?* I mentioned the article on HEMEX and Dr. Berg, and pointed out all the symptoms mentioned in the article that seemed to match mine. I could just see the lightbulb flash on above her head! She was somewhat familiar with the hypercoagulation theory, and she seemed very excited about it, and said this could explain everything I am experiencing. We drew the blood for the test that afternoon.

    Sujay said that I am very lucky to have a doctor who would do this for me. She's been great. She's even going to Arizona to attend HEMEX's physician seminar in a few weeks to learn more about it! It's so refreshing to have an open-minded doctor who is behind me with this.

    ***

    Tansy,

    I wish you all the best with getting your doctor to run the tests you have available on the other side of the Big Pond. It sounds like you know this could be the answer for you, since you know your symptoms fit. You've probably read the David Berg article on this site -- do you think your GP would read it and/or talk to Dr. Berg? For what it's worth, my impression was that he is willing to help educate physicians about this. If that doesn't work, is there any possibility you could swing a trip to the U.S. for testing by HEMEX?

    ***

    Jai,

    I'm not sure how long I'll be on the heparin and lumbrokinase. I know my doctor had a detailed consultation with Dr. Berg about my case, and I believe she trusts his judgment regarding my treatment. Knowing my doctor, though, she won't have me on any medications that aren't absolutely necessary! I think Jellybelly has been taking heparin for quite some time, but she uses a nasal spray. (I wish she were here to tell us how long she's been on this treatment.) Do you know if there are any long-term problems with taking heparin? If you don't mind, how long did you do the heparin injections before you stabilized (and how do you feel now that you've stabilized)?

    ***

    Abi,

    I'm so sorry to hear the doctors there are so hard-headed! That's awful that they choose to ignore the fact that you were feeling better on the Coumadin. If they won't let you have that, is there another type of anticoagulant that might help? If not, maybe there's a more sympathetic doctor out there for you. Best of luck!

    You guys are great. Thank you so much all for the good wishes!

    Kalina
  10. Applyn59

    Applyn59 New Member

    for the reply, Kalina!

    I see an endocrinlogist for polycystic ovarian disease and he ran some hormone tests, but not all of them.
    I was not tested for DHEA. I had a fasting 24 hr
    cortisol test that was okay and my estrogen is fine
    and my testosterone is low. I think it's in range, but it
    was something like 7. Do you think that hormone
    problems are the only reason to be tested? I asked
    him to do the growth hormone test and he did it with
    no problem.

    Am wondering if I should broach the
    subject with him. I have read that those with PCOS
    are more prone to blood disorders so maybe the fact
    that I could have two reasons to wonder would spur
    him to do it! I love him and wish he were my
    FMS doctor.

    You had to pay for Hemex testing out-of-pocket, right?
    I hope you have great success with this treatment.
    Sorry for all the questions! Just curious as to why
    some think that this is the answer for them to see
    if I should think so, too.

    Take Care,
    Lynn
  11. kalina

    kalina New Member

    I'm not sure if your hormone abnomalities would be the only reason to be tested. Sorry, I'm kinda new at all this, and I'm definitely still learning!

    Have you tried to get your hormone levels up to a normal range without success? That could indicate a hypercoagulation problem, since medication isn't absorbed easily. By the way, if you've experienced pelvic pain as a result of your PCOS, that's another clue. And if blood disorders are something that goes along with this, then you have something else to consider.

    I'm still waiting to hear from my insurance company, and don't know yet if the tests will be covered. They're a bunch of nincompoops, but sometimes they surprise me and approve some of my claims! If you know yours won't cover the test, I understand your hesitation, because the tests are pretty expensive. All I can say is that I just read that article and KNEW I had to go for it. Just a gut feeling that I've come to trust, and with the symptoms I had, it was a no-brainer for me. Even if my insurance company doesn't come through, it was well worth it if the treatment helps!

    Have you read through Jellybelly's posts on this subject? If not, she's done a lot of research and writing about it here, and there might be some more useful info there for you if you run a search.

    It certainly don't think it would hurt to talk to your endocrinologist about this to see what he thinks. He may be your best bet if your FMS doc isn't as interested in trying this sort of thing. Maybe he could help you decide if it would be worth it for you to try the testing.

    And now my bed is calling my name. I'll probably check in again tomorrow evening. Hope this helps you.

    Kalina
  12. tansy

    tansy New Member

    Hypercoagulaton really does seem to anwser lots of questions for me. My past history makes it all the more likely so I think I might have grounds for pushing this forward. If I have no joy I will consider using nattokinase since digestive enzymes don't appear to be the answer for me. Can't get it the UK but I know someone who lives in Tokyo so might be able to source some there. My only concern is that I'm already having to be careful because I'm thrombcytopenic, I imagine any doc is going to need some real convincing to thin my blood as well.

    If I had the physical and financial resources I would fly over and go to Hemex.

    Did source some of the specialised DNA tests for chronic infections in the UK, very expensive but worth it providing lab is good. Will get brother to check out their reputation etc. Trouble is I will need to choose each potential microbe seperately and they don't seem to cover all the ones mentioned in articles on these. Clearly these have to done once the blood becomes less sticky.

    Pat Palmer has come a long way since starting her regime, and feels it has changed her blood. Klutzo has also emphasised the need for digestive enzymes with and between meals too. Pat thinks she has managed what we want to achieve with self help only.

    Hope it all goes well and that you regain your health and life, even if it does take time.

    Cheers

    Tansy
    [This Message was Edited on 06/03/2003]
  13. sujay

    sujay New Member

    I'm so excited for you. I think you and your doctor are really on to something here. Please keep us all posted ; it may encourage other patients to look into this and give them real hope for improvement. Even if we can't really CURE this problem, I think some of us may finally have a chance to control our symptoms and GET OUR LIVES BACK. If your doctor would like to talk to me, Dave Berg could give her my phone number. (I'll give him permission.) I'm always happy to talk to another medical professional who is willing to explore the concepts involved; it's all basic physiology, but a lot of us were glad to think we were putting the classroom behind us when we graduated from medical school.
  14. Mikie

    Mikie Moderator

    Is a wonderful thing, especially if it is based on good medical sense, tests, and logic. I am very happy for you. So many of us here are really spearheading what I beleive will someday be standard treatment for our illnesses. We should feel proud that we are pushing ahead and paving the way for others to come. Good for you and for your doc!!!

    Love, Mikie
  15. tansy

    tansy New Member

    I couldn't agree more. Thanks to the many contributors to this board we are all learning so much, between us we are coming up with so much valuable information and treatment options. We're way ahead of the majority of the medical profession.

    By the way Sujay I looked up Hughes Syndrome on the UK site but no mention that I could find of stealth infections or hypercoagulation's effect upon the cells generally. The advice seems to be just heparin, warfarin or small doses of aspirin.

    Cheers

    Tansy
    [This Message was Edited on 06/03/2003]
  16. DonnaG

    DonnaG New Member

    Ok I'm just so confused as to what to believe, or what type of treatment is right for myself, but my Dr. mentioned to me that he believes I have Rynauds as well. He has told me to start taking the 81mg of Bayer each day. Could this be a clue that he may believe I have hypercoagulation? I don't have any of the other symptoms such as hair falling out etc..Any suggestions?
    Thanks,
    Donna
  17. kalina

    kalina New Member

    But I wanted to check in anyway...

    Sujay and Mikie, thank you so much for the encouragement!

    ***

    Sujay,

    I promise to keep you all posted on my progress! I'm sending my DH to my doctor's office tomorrow to pick up supplements, and I will pass along your invitation to discuss this with her. If she doesn't talk to Dr. Berg in the next couple of weeks, she will probably see him at the seminar at the end of the month. You know, after hearing from you and reading some of the other posts from people who have had problems getting their docs to check into this for them, I thought I 'd also include a note of appreciation.

    ***

    Donna,

    Jellybelly posted an article here a while back that says (in part):
    "David Berg of Hemex Laboratories has been studying the hypercoagulation often found in patients with chronic disease. This list currently includes CFS/FMS, myofascial pain syndrome, osteonecrosis of the jaw, fetal loss, multiple sclerosis, Crohn's disease, Sjogrens' syndrome, IBS, Lyme disease, autism, gulf war illness and ADD."

    It didn't mention Reynaud's, but doesn't that have to do with decreased blood flow? I'm not all that familiar with it, but if this is the case, I would definitely discuss the Hemex panels with your doctor (bring supporting articles if you can!).

    Kalina
    [This Message was Edited on 06/03/2003]
  18. Applyn59

    Applyn59 New Member

    You know what can be so annoying in all of this?
    Don't know if this is the right thread, but I find that
    I can physically exhaust myself preparing for
    doctors appts. Between researching online and
    gathering materials, printing them up, getting your questions written down, etc. It is no small task
    those of us severely compromised and it can be
    so overwhelming.


    Kalina - I think you misunderstood me or I was
    unclear. I have low growth hormone but
    my estrogen, prog, and testosterone
    are all within normal range.

    Thanks for taking the time to answer our questions!
    Lynn
  19. DonnaG

    DonnaG New Member

    Thanks Kalina I will check out JellyBellys posts.
    Donna
  20. kalina

    kalina New Member

    How cool that we have the same doctor! You're right -- our doc is still learning about this, but I think we are fortunate that she is open-minded enough to try. I'll be sure to catch up with you on your other post. And welcome to the board -- I'm so glad to meet you!

    I also have an update on my treatment: Our doc must have had a recent conversation with Dr Berg, because I was taken OFF the heparin after 5 days. One of her nurses called me and told me to stop because they were still working on getting the lumbrokinase in, and then a nurse called to say that I needed some tests first:. In addition to a DEXA scan, I need a baseline CBC, PT, PTT and platelet count. (The PTT and platelet count will have to be repeated every two weeks for two months.) So I'm going in on Wednesday to get all my tests, and hopefully they will have the lumbrokinase by then. Looks like I'll be restarting treatment at about the same time you will be beginning yours!

    Kalina