Sticky Blood Heparin anyone?

Discussion in 'Fibromyalgia Main Forum' started by tjsmom, Apr 10, 2007.

  1. tjsmom

    tjsmom New Member

    Hi all, Kim here, TJ's mom.
    We had a great visit with Dr. S in Poulsbo - she was awesome - still trying to absorb all the info.
    One of the things she educated us about is TJ's sed-rate, which is low....her experience is that many of her patients have "sticky blood" - as evidenced by the low sed-rate. This is like a bacterial-induced form of Hughe's Syndrome, which, by the way, also mimicks MS... Anyway - she has started TJ on a very low dose of Heparin - he holds the liqued under his toungue for 15seconds, no injections - so far, this in conjunction with no added vitamin D seems to be having a very positive impact - increased energy or at least more intermittment fatigue vs constant fatigue, and his mood has gone way up!
    Anyone else taking heparin?
  2. sturg1

    sturg1 New Member

    Hi Kim,

    I was put on Heparin shots (5000 ml 2 xs/day) in July. My belly got a little sore so the dr. said I could take a "vacation" from them and see how I do.

    When I went back for my follow-up, I could hardly walk my muscles were so tight and sore. So, I'm back on them and already see improvement in the tightness.

    Hope you have success with TJ's!
  3. Defor

    Defor New Member

    Hi Kim,
    I was so interested in your post as I am going to have a blood test for Hughes Syndrome soon. I'd never heard of it before but I consulted a private doctor who, after asking about my case history, advised me to ask my GP to test for it.

    Two days later there was an article in the newspaper about a guy who'd been told that he'd got MS. He'd been ill for over thirty years and he was in a wheelchair. After treatment he is now well on the road to recovery.

    I looked it up on the Internet and it said that it can be misdiagnosed as MS or ME so it's worth checking out.
    I've never heard of the 'bacterial induced' type of Hughes Syndrome but it makes sense.

    Les Simpson, a New Zealand researcher who'd been looking at ME cases for 34 years said that we'd all got 'sticky blood' and it was unable to pass around the body properly.

    I hope that TJ continues to improve and send best wishes to you both,
    Kindest regards,

  4. Mikie

    Mikie Moderator

    Sounds like the doc is using low-molecular-weight Heparin. That is the way to go. My doc had no experience with it so he would only prescribe the injectible type. I had a Sed Rate of 2 (it had been down to 1 at one point). I did not have the ISAC panel for hypercoagulation at Hemex Labs. We just tried it empirically. A low sed rate is an indicator of hypercoagulation but it isn't definitve. I'm in an HMO and it's unlikely they would have covered the tests. Everything my docs and I did was done empirically.

    The type of hypercoagulation we often have accompanies chronic infections. It is fibrin overgrowth in the blood. This can trap platelets in the fibrin and keep them from getting to wound sites to clot the blood. Therefore, a person can paradoxically easily bruise and/or hemmorhage while suffering from hypercoagulation.

    There's a lot of info on this at the HEMEX website. Good luck with the treatment.

    BTW, I had the biggest Herxing from the Heparin as it destroyed the ares where pathogens can hide out in the fibrin clumps. I stopped bruising so easily and a large numb spot on my leg regained feeling.

    Love, Mikie
  5. Slayadragon

    Slayadragon New Member

    Hi Kim,

    You also might consider natural blood thinners. I use nattokinaise, which is made from soybeans. There's another one called lumbrokinaise (?), which is made from earthworms.

    It could be worth a try, just to see how they work compared to the heparin.

    I tried heparin for a short while early in my illness but didn't have a response.

    However, recently I have been taking an antiviral (Famvir). When eventually I added the natto, I got a big additional die-off response. Apparently viruses hide in the fibrin in the blood, and so you can't get rid of them unless you thin down the fibrin.

    It's interesting to hear that the decreased fibrin is having such an impact on its own. I'm glad that you found something that's working.

    Best, Lisa

  6. Mikie

    Mikie Moderator

  7. Rnclegal

    Rnclegal New Member

    Very interesting. Typically, Sed rates remain normal during Fibro which is why its so difficult to diagnose. I will also be checking with my doctor about this.

    Please remember that while on heparin or herbals that react as heparin, you will bleed even with the slightest cut so if you are going to have surgery make sure you tell everyone that you see that you are on heparin. Although you get asked the same questions over and over prior to a procedure, it doesnt appear to me that anyone actually reads the notes by the nurses or listens to the patient. <Sigh>

    Carolyn Bowen, RN, HFEN (Ret)
  8. wld285

    wld285 New Member

    Was going to just ask if people knew what their fibrinogen count was, if they were treated, and if it helped. Mine was 328. I have a very high tolerance to meds , and was wondering if treating this would make a difference.

    Hi tj'smom and thank you for posting this.
  9. pawprints

    pawprints New Member

    Just to add...I was also put on Heparin shots and did them for about 7 months until my stomach became too sore. I thought they helped. I am now on natural blood thinners to help with the sticky blood. This board was very helpful when I had questions regarding the Heparin. I'm glad your doc is doing without injections. It becomes a pain, but worth it.
  10. roge

    roge Member

    highly suspect this for me as I have a SED rate of 0!

    and will be asking for a fibrinogen test very soon. is that an accurate test or is the more sensitive Hemix panel better , just hemix costs around $500, I guess first step is get the fibrinogen from OHIP funded lab as doesn't cost me anything and if tests high, then fair to say I have thick blood, if not, maybe not 100% sensitive test, and then use hemix lab i guess? Other option I suppose is to assume I have it and treat empirically.

    someome mentioned for FM, sed is usually normal, well ya normal in the sense that is not high but Dr. Teitelbaum and I agree says FM and would think CFS patients have very low sed rates , he didn't quantify but I would say many have <3. and so why would this be, well could very well be as we have thick blood.

  11. Mikie

    Mikie Moderator

    In all these years, no doc has ever taken note of my low sed rates. All they seem to care about is whether they are too high.

    The Heparin was just part of my overall regimen. Seems that people with chronic infections often have fibrin overgrowth. Pathogens like to live in low-oxygen environments. I have often wondered whether they are able to manipulate the body in order to thrive unencumbered.

    Getting control over the infections and rebuilding the immune system were other important parts of my treatment plan.

    Love, Mikie
  12. kellyann

    kellyann New Member

    My doctor is putting me on heparin injections very soon due to "sticky blood." I am very nervous about it too. I just had a nurse teach me how to do the injections yesterday. I am going to have to do two injections per day in my belly. I hope it makes me feel better. But it is so scary. My aunt is on heparin shots,and she has lupus. I often wonder if I don't have lupus also. She has some type that is called type IV? Or something like that, I am not sure.
    Has anyone ever heard of a lupus type IV? or type 4?

  13. pawprints

    pawprints New Member

    My sis has Lupus but I don't know about the type you mentioned.

    No need to be scared of the injections. Here's advice someone on this board gave me and I am passing it on....get a bag of frozen peas or carrots, etc. and ice your belly prior to the injection. This helps the shot not hurt. Hold the ice there for awhile after each injection and this helps the bruising.

    Good luck!
  14. Juloo

    Juloo Member

    My FFC doc had talked to me about my blood results which showed that my blood was 4X the top of 'normal', and decided to put me on lumbrokinaise and see how I'd do. I think I managed around 6 - 8 weeks, and didn't even make it up to the full recommended dose. I herxed something awful...lots of pain. She's asked me to take a break for a couple of months, and I was happy to. In the meantime, I've had two really bad colds w/sinus infections (and I haven't been sick very much in the last couple of years).

    So it is clear that treating this is having a big effect in my body. I'm probably going to go back on the lumbrokinaise after a bit more of a break. I'd prefer to wait until after our family vacation so I can enjoy it with as little pain as possible!
  15. tjsmom

    tjsmom New Member

    Hi all! - after only two months with the sublingual heparin - TJ's SED rate has come up 2 points!!!!!
    Yeah - hoping to get the clear to take him off, and then start the MP meds!
    thanks all for the info shared.
  16. elliespad

    elliespad Member

    One of the first treatments I did after starting with FFC was Heparin Injections, twice a day. Did them in a clockwise pattern around my bellybutton. They were not painful, but did leave bruises.

    I immediately had almost complete relief from muscle and tendon pain. AMAZING. Only did these injections for one month, then the doctor switched me over to Lumbrokinase, an enzyme product derived from earthworms. My pain gradually returned and he has never put me back on the heparin.

    I am now doing the Methylation Unblocking protocol, and have gone from a level 8 or 9 pain, down to a 1 or 2, again, AMAZING. I have 2 threads going.

    I hope this heparin proves really helpful for your son.
  17. Mikie

    Mikie Moderator

    Can be indicitive of excess fibrin in the blood but the ISAC panel from HEMEX Labs can be more definitive. Most docs, like mine, will try the Heparin emprically. My Sed Rate was down to 1 at one point. Now, it's a more normal 7.

    The Heparin can cause strong immune reactions and Herxing as it clears the blood of places for pathogens to hide out from the immune system.

    You can do a search on Heparin and read our old posts on it.

    Love, Mikie
  18. Waynesrhythm

    Waynesrhythm Member

  19. munch1958

    munch1958 Member

    I did heparin shots for 10.5 months for treatment of hypercoagulation. My Hemex test came back high (results are in my profile) and my sed rate was 1. I have also tested positive for both active and latent multiple infections.

    I had tried Lumbrokinaise while at patient at the Detroit FFC. I quit taking Lumbrokainse after about 6 weeks. It was $100 a bottle and my insurance didn't cover it. I got NO positive response from it and felt NASTY all day every day.

    My insurance covered the cost of heparin ($10) and the syringes ($17) a month. My dose was 12,000 units 2x a day. My doctor monitored my clotting times (PT) every week to get the right dose for the first month. Then I went in once a month for monitoring.

    I noticed an immediate effect of heparin on brain fog. It was sort of like the feeling of using a nasal spray for a clogged nose. My brain just kept on getting clearer. I felt an immediate difference with the first dose. My Fibro (muscle) pain got much better and has since disappeared. The pain has not come back.

    When you have hypercoagulation, you will bleed MORE from a cut on the finger than the average person when the sticky blood is not treated. In the beginning, I was worried about bumping into things and bruising but I found that I bruised LESS when on heparin. Before treating my hypercoagulation issues, I had mystery bruises from things I don't remember knocking into.

    I noticed my menstrual cycles were very light the entire time I was on heparin too. Now that I'm off of it they're back to being more on the heavy side. Overall, I thought this effect was bizzare but my doc said my experience was very typical.

    Here is more info about infection based "sticky" blood: