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  • Fibro caused clotting/clotting caused Fibro - or Something Else?

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    Old 12-19-2006, 07:47 AM   #1
    Sisyphus3
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    Question Fibro caused clotting/clotting caused Fibro - or Something Else?

    DW has had some mysterious health challenges recently, and I'm wondering whether any of the people who frequent the Fibro board see themselves (or someone they know) and can shed any light. I'm not thinking Lyme but I didn't want to leave out the tick detail.

    DW developed a DVT on Veteran's Day (11/11). We had found a partially-fed tick high on the bedroom wall about a week before (say 11/2 we live in a new exurban subdivision in a formerly rural area--don't know who the tick bit: her, me or the toddler, and there are no public health warnings about ticks on the West Coast of Florida, we also haven't been able to positively ID the tick based on photos online and what we remember about it), and in the days just before that find she had experienced mildly flu-like symptoms without a lot of respiratory involvement--but other strange symptoms came and went the first week of November ... and I need to mention she had done some heavy yard work 10/22 or so (clearing and grubbing grass killed by take-all root rot).

    She had been feeling increasingly achy and run down for a year (basically, these were CFS/Fibromyalgia-type symptoms--also I had noticed that the skin of her body was always cool to the touch). Professional massage was necessary every week or two to keep her at all functional. And the 10/31 massage was the one that really exacerbated her flu-like problems.

    She also had a DVT during pregnancy nearly three years ago (Valentines day '04)--same spot, left leg. She was getting "run down" and somewhat achy before it happened too... Also eating a lot of McD's sausage biscuits due to cravings ... ordinarily she avoids meat and non-aged dairy due to sensitivity to something bovine (maybe casein?).

    When she received heparin in the ER on 11/11, her neck & shoulder pain and stiffness unexpectedly vanished (she noticed it in her wrist first) within about 15 minutes. The next morning she awoke in her hospital room without fatigue and rarin' to go. When she got home her skin was also nice and warm (but has cooled slightly from a "been lying on the beach" type warm to a "normal" type warm).

    The Lovenox (home heparin treatment) was withdrawn, but she's still on coumadin/warfarin, and the aches, etc. have only returned a little bit--so far.

    Everything they've been testing her for is coming back normal ... many genetic tests were done a couple of times in the past, and the hospital found only mildly elevated liver enzymes.

    Her doctor's round of tests found nothing in the way of thyroid problems and the sed rate wasn't high. The exotic frozen stuff (MTHFR gene, etc.) was only recently done and isn't back yet. They haven't looked for Lyme, Babesia, etc. because they don't really suspect it.

    We've been doing a lot of reading and research online and there are certainly tick-borne (Lyme and Babesia and Erlichia, etc.--and I suspect others undiscovered) candidates for creating hypercoagulability, along with mycoplasmic infections and viral infections. Some doctors believe infections trigger antiphospholipid syndrome.

    There are sufferers who have received relief from low-molecular weight heparin (brand name Lovenox) prescribed by doctors on the theory that these disease-producing microbes are anerobic and either make their own fibrin or use fibrin circulating in the body to make coverings for themselves as they move into endothelial (lining of veins) tissues so that they are protected from exposure to oxygen and from discovery and destruction by the immune system. The fibrin buildup allegedly deprives muscle cells of oxygen and results in pain and stiffness.

    The fibrinogenic and fibrinolytic proteins and enzymes in the healthy body exist in an exquisitely delicate balance and a slip in either direction results in bleeding or clots.

    Other doctors point to Vitamin D deficiencies and defects in the processing of Vitamin D ... suggesting supplementation from 2 to 6 times the RDA (800-2400). We're at 800 right now.

    Our working hypothesis for her is fibromyalgia/CFS/CFIDS, but that could change... One thing we've discovered is that guaifenesin (pure form, not off-the shelf cough syrup) is a popular treatment for fibro that is unknown to many GP doctors.

    There is a nearby doctor we haven't been to yet who prescribes it, and it turns out the pharmacist I already use for my HRT testosterone/chrysin compound also makes a guaifenesin preparation for many patients and even ships it out of state.

    No one quite knows how it works, although it's main proponent claims that it has to do with helping the kidneys handle some phosphate compounds. Others think it has a lot of different effects, most of which are helpful for fibro. We haven't used any of the guaifenesin yet--whether we go on it will depend on whether her pain comes back.

    So does this sound more like thyroid, fibro/CFS, or something else (maybe tick-borne)?

     
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    Old 12-19-2006, 10:55 AM   #2
    elmhar
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    Re: Fibro caused clotting/clotting caused Fibro - or Something Else?

    Quote:
    Originally Posted by Sisyphus3
    So does this sound more like thyroid, fibro/CFS, or something else (maybe tick-borne)?
    Sounds like you've got a good handle on the theory behind why anticoagulants are sometimes helpful for fibro/CFS. If you haven't seen the section entitled, 'The Role of the Blood Clotting System,' in the most recent edition of From Fatigued to Fantastic by Jacob Teitelbaum, MD, you may find it interesting reading.

    It's possible that the 'something else' is triggering both the DVTs and the CFS/Fibro type symptoms. May even be interacting with the whole HPA axis. It's my belief that our bodies function in a much more interconnected, interactive way than most 'diagnoses' suggest.

    I'm not sure how long it will take allopathic medicine to turn from symptomatic treatment to recognition & treatment of cause. It's very discouraging, since the money is in management of symptoms, not eradication of their causes. And if symptoms can be treated with side effects resulting from the treatmentthat necessitate even more pharmaceutical management, so much the better. Excuse my cynicism, pet peeve.

    For example, it's been known since the 1930s that mycoplasma is the causative agent of much autoimmune illness, and that this can be treated/suppressed rather simply, elegantly & effectively with few downsides; vetted through NIH studies ... but the average doctor & even specialist is so besotted with their perks & 'continuing ed' courtesy of big pharma that they won't even consider looking at the research. Our medical system glorifies those who benefit financially from the suffering of others in the name of healing. Bass-ackwards & evil if you ask me.

    If you can get the proper PCR testing done for borrelia, babesia, mycoplasma, & the likely viral culprits, IMO that may be cutting to the chase. Personally I would pursue that route before the guai. Although I know it helps some people significantly, there are many who seem to suffer along with the St. Armand program for years ... and I do believe that the majority of the testimonials indicate a fair bit of suffering.

    Best wishes, & I hope you will let us know how this all turns out.

     
    Old 12-23-2006, 04:26 AM   #3
    Sisyphus3
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    Re: Fibro caused clotting/clotting caused Fibro - or Something Else?

    Quote:
    Originally Posted by elmhar
    Sounds like you've got a good handle on the theory behind why anticoagulants are sometimes helpful for fibro/CFS. If you haven't seen the section entitled, 'The Role of the Blood Clotting System,' in the most recent edition of From Fatigued to Fantastic by Jacob Teitelbaum, MD, you may find it interesting reading.
    DW was at the local health food and supplement store yesterday to see a clerk there she had heard was very knowledgable. She came home with that book (which I had planned to pick up for her at the bookstore for Christmas).

    Quote:
    It's possible that the 'something else' is triggering both the DVTs and the CFS/Fibro type symptoms. May even be interacting with the whole HPA axis. It's my belief that our bodies function in a much more interconnected, interactive way than most 'diagnoses' suggest.
    I actually wonder as well. I know too many people with conditions that doctors label "autoimmune" and treat as chronic rather than remediable. For big pharma, the former is where the profit lies. They can dominate the world of studies and medical journals if they conveniently ignore elephants like h. pylori in the room. Anyone who questions such a notion should read up on the long battles of the researcher who discovered that one.

    Quote:
    I'm not sure how long it will take allopathic medicine to turn from symptomatic treatment to recognition & treatment of cause. It's very discouraging, since the money is in management of symptoms, not eradication of their causes. And if symptoms can be treated with side effects resulting from the treatmentthat necessitate even more pharmaceutical management, so much the better. Excuse my cynicism, pet peeve.
    I think the tide is about to turn. A couple of weeks ago, the GreeneChip was announced. 30,000 diseases tested for on a single slide for $125. Now we'll find microbes and microbe constellations that produce particular conditions.

    And if that doesn't do the trick, it's likely that "shotgun sequencing" will find bugs in the 200 nanometer range that nobody thought to look for because they were believed to be too small to exist.

    Quote:
    For example, it's been known since the 1930s that mycoplasma is the causative agent of much autoimmune illness, and that this can be treated/suppressed rather simply, elegantly & effectively with few downsides; vetted through NIH studies ... but the average doctor & even specialist is so besotted with their perks & 'continuing ed' courtesy of big pharma that they won't even consider looking at the research. Our medical system glorifies those who benefit financially from the suffering of others in the name of healing. Bass-ackwards & evil if you ask me.
    I tend to think they didn't quite know how to find the microbial culprits in a reliable way, so they turned to palliative care, and got comfortable with the income stream from doing it. Now they're going to need to go back to the drawing board and do it right.
    Quote:
    If you can get the proper PCR testing done for borrelia, babesia, mycoplasma, & the likely viral culprits, IMO that may be cutting to the chase.
    Looks like there may be something even smaller out there to look for ... I wonder how long before patients will be able to have doctors look for it?

    Quote:
    Personally I would pursue that route before the guai. Although I know it helps some people significantly, there are many who seem to suffer along with the St. Armand program for years ... and I do believe that the majority of the testimonials indicate a fair bit of suffering.

    Best wishes, & I hope you will let us know how this all turns out.
    Thanks for the wishes. She came home with kelp, cod liver oil and magnesium malate to add to our standard mix of supplements. The guy at the health food store was surprised that she was already drinking a little vinegar.

    She's holding her own right now, so all this should move her into making progress.

     
    Old 12-23-2006, 11:14 AM   #4
    elmhar
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    Re: Fibro caused clotting/clotting caused Fibro - or Something Else?

    Thanks for your thoughtful & informative comments. I'm going to look into that Greenechip test. Glad to hear your DW is holding her own.

     
    Old 01-05-2007, 10:21 AM   #5
    Sisyphus3
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    Post Re: Fibro caused clotting/clotting caused Fibro - or Something Else?

    Quote:
    Originally Posted by elmhar
    Thanks for your thoughtful & informative comments. I'm going to look into that Greenechip test. Glad to hear your DW is holding her own.
    The latest is that even though she was taking a good bit more warfarin than was prescribed to her (due to a misunderstanding regarding a half-dose versus a half tablet), her INR had only made it to 1.6 ... doc reduced the dose regardless, and shipped her off to a hematologist. The hemo sent her for a abdominal & pelvic CT with contrast, and ran some other tests. Apparently the hemo said there were a couple of genetic issues (nothing that has a particular name worth telling my DW, so presumably they're just polymorphisms rather than frank defects). There are some other blood tests the hemo had run ... don't remember them off the top, but I do remember that they were tests I was surprised had not already been run at the hospital back in November. So far the phone hasn't rung with any startling news.

    In the meantime, her condition is perhaps a bit better. But she's not sitting still waiting for the doctors she has now to give her answers, nor is she running to the guaifenisen doctor ... she has found a doctor in Ormond Beach who does phone consults and knows a whole lot about treating problems like hers.

    I think one of the great tragedies about boards like this may be that people who get relief are either gone immediately, or move on with their lives within a few weeks or months, leaving behind people whose problems are either entirely intractable, or who have received only partial relief, not long-term remission or even cure.

    Every once in a while, some doctor or former sufferer writes a book or sets up a website, but often they focus on what fixed the problem for them or for a subset of their patients rather than evincing a recognition that battling a syndrome may be a pursuit requiring idiosyncratic regimens.

    If we find something that's a dead-bang solution, we'll try to stick around at least long enough to leave a strong record of what we've learned.

     
    Old 01-10-2007, 08:44 AM   #6
    Sisyphus3
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    Post Re: Fibro caused clotting/clotting caused Fibro - or Something Else?

    In the last few days DW felt twinges enough in one or both of her calves to dip into the dwindling stash of long out-of-date lovenox we have left over from her first DVT (during the pregnancy about 3 years ago).

    Meanwhile, we still haven't heard anything back on the CT.

    She had a phone consultation this morning with the fibro doctor in Ormond Beach, who called her "textbook" and will be running about $1500 in blood tests. He said her blood clots were autoimmune, and that the hemo would not find a known cause and that because it's fibro the warfarin isn't helping. He told her to get off the warfarin.

    He also told her that she needed to be taking melatonin to enhance her sleep, and also aspirin (which she has been off since the second DVT). He says lovenox is helpful only symptomatically, it's no cure (oh, but is it ever helpful against the symptoms!) and it's expensive (I'm thinking Canada could be helpful here--at least for purposes of having supplies on hand in case of flare-ups).

    The Doctor said she is early enough in the disease process and otherwise healthy enough that she can expect a complete cure.

    He is surprised more did not go wrong after the Halloween-day massage session that was just a day or so into her flu-like illness (and which preceded DVT #2 by about 10 days).

    Last edited by Sisyphus3; 01-10-2007 at 08:47 AM.

     
    Old 01-10-2007, 09:29 AM   #7
    elmhar
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    Re: Fibro caused clotting/clotting caused Fibro - or Something Else?

    I would be very careful to treat incipient DVTs adequately. You are probably aware that an embolism would be a Very Bad Thing.

    On the other hand, aspirin can sometimes potentiate other blood-thinners. Not sure about the Lovenox. A pharmacist would be a good resource on that question.

    Personally, I would be uncomfortable self-treating DVTs with Lovenox, etc. without getting regular clotting times done. Perhaps you have a way to arrange for that.

    BTW, I think you are correct in your analysis of who stays 'on board' here. Those who have experienced healing are generally eager to get on with life.

    Best wishes to you & your wife.

    You are sure about your consulting fibro doc? Melatonin can enhance sleep, but is usually contraindicated in autoimmune disorders ...

     
    Old 02-21-2007, 12:53 PM   #8
    Sisyphus3
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    Lightbulb Re: Fibro caused clotting/clotting caused Fibro - or Something Else?

    DW has yet to get the blood tests done. She hasn't had a chance. I went down in Mid-January with something mono-like which had effects that lasted a month. I think it was Q Fever because levoquin actually knocked it out. I also had some exposures to strange and wonderful animals (alive and dead--circus and roadkill) in the week before this happened. Search the word "guignol" on HB if you want more detail.

    Meanwhile she's discovered nattokinase, which does for her pretty much what the low-molecular weight heparin (lovenox) was doing. And a whole lot cheaper and easier (capsule versus shot). She's also taking a lot of Vitamin E. Avoiding aspirin.

    The leg has been very well behaved since she began the nattokinase.

    Her supplement regimen is controlling most of her fibro symptoms, and the melatonin lets her sleep.

    YMMV

    Last edited by Sisyphus3; 02-21-2007 at 02:29 PM. Reason: Forgot to mention DW wasn't taking aspirin.

     
    Old 02-25-2007, 04:45 AM   #9
    Sisyphus3
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    Lightbulb Re: Fibro caused clotting/clotting caused Fibro - or Something Else?

    DW worked all day around the house and went to the fair last night with our almost 3-year old. So far, no ill effects. Also, she does not have to think about the leg.

    I'm going to post her vitamin regimen in detail, but here are the basics:

    Women's multivitamin
    Vitamin C (500)
    Vitamin D (400)
    Vitamin E (1200)
    Magnesium Maleate
    Nattokinase (2 every morning)
    Cod Liver Oil (small capsule)
    Garlic (small capsule)
    Kelp (150?)
    Acidophilus (4 strain, refrigerated)

    Last week she cut back on her Vitamin E after experiencing some symptoms of dehydration although she was getting a normal amount of water. She had been taking 3,000/day. She also tried dividing her dose of Nattokinase (she had been taking 2 every morning) between morning and afternoon, and that was not helpful.

     
    Old 02-25-2007, 10:34 AM   #10
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    Re: Fibro caused clotting/clotting caused Fibro - or Something Else?

    Hello Sisyphus3,

    Thank you for keeping us posted on your DW's progress. It sounds like she's made great strides the past several months! I appreciate your effort in posting the details of her supp regimen.

    Best wishes.

     
    Old 03-07-2007, 08:25 AM   #11
    Sisyphus3
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    Re: Fibro caused clotting/clotting caused Fibro - or Something Else?

    Still doing well. Vitamin E now back up to 2,000.

     
    Old 03-07-2007, 09:51 AM   #12
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    Re: Fibro caused clotting/clotting caused Fibro - or Something Else?

    Sisyphus,

    I'm wondering whether your DW suffered "herxing," a worsening of symptoms when she took the natto? I've heard that this is sometimes a problem, esp. when viral titers are elevated.

    Thanks for your reply.

     
    Old 03-08-2007, 10:27 AM   #13
    Sisyphus3
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    Thumbs up Re: Fibro caused clotting/clotting caused Fibro - or Something Else?

    She just told me she had a bit. Nothing she couldn't handle. Went away soon enough.

     
    Old 04-18-2007, 06:03 AM   #14
    Sisyphus3
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    Lightbulb Re: Fibro caused clotting/clotting caused Fibro - or Something Else?

    Quote:
    Originally Posted by Sisyphus3 View Post
    She had a phone consultation this morning with the fibro doctor in Ormond Beach, who called her "textbook" and will be running about $1500 in blood tests. He said her blood clots were autoimmune, and that the hemo would not find a known cause and that because it's fibro the warfarin isn't helping. He told her to get off the warfarin.
    It took a long time for DW to make time to get in and get the blood tests at a lab that took our insurance. We knew where some convenient locations were, but their waiting rooms resembled the Star Wars bar scene.

    So she finally got in there a week ago, and last night she had a phone consult with the doctor.

    She's positive for 3 out of the four viruses he looks for in the active stage: HHV6, Epstein-Barr, and Parvo B19. She missed out on CMV (cytomegalovirus). Good. That one causes schizophrenia. He's going to put her on an antiviral to suppress all of them.

    She also has sensitivites to lots and lots of foods according to the Sage Medical Lab ELISA test. I think maybe she can only eat alfalfa and marmosets. Just kidding. But milk, casein, soy, baker's yeast, lecithin, eggs and lots of other stuff needs to be eliminated for 6 weeks and then slowly reintroduced. Basically, she can eat chicken, fish, shrimp, pasta, pesto, olive oil, veggies and fruits. Some of the perimeter of the grocery store is OK, most of the interior aisles are verboten. Oddly, they didn't find a red meat problem. We think perhaps because she's so reactive to red meat that she hasn't eaten it in months (and was only eating it during an approximately 1 year period that ended 6 months ago--I had stupidly suggested that a mithridatic approach might allow her to start eating red meat, and she had sheepishly gone along).

    The doctor said that her case was very similar to his case, but he is astonished at how early she got diagnosed, he says the disease is often far gone by the time people get to him.

    He also wants me tested and treated so that we don't just pass the viruses back and forth. I'm going to push for the rickettsial bacteria to be tested for based on both the tick we found early in the course of this and my Q-fever like episode in January. I believe the viruses she has active are typically not active in adults, and my suspicion is that something else is damaging the immune system so that they can get out and party more ... and that might be one of the rickettsial organisms.

    Last edited by Sisyphus3; 04-18-2007 at 06:08 AM. Reason: spelling

     
    Old 04-18-2007, 09:40 AM   #15
    elmhar
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    Re: Fibro caused clotting/clotting caused Fibro - or Something Else?

    Hi again Sisyphus,

    I hope your DW does well with the antivirals & the special diet. I am also one who must shop the perimeter of the grocery store. No gluten, dairy, egg, peanut & limited soy. I am also reactive to many veg. incl. nightshades & the goitrogenic ones. Not all of my sensitivities have shown up on ELISA & conventional allergy testing; and some of the ELISA hits didn't seem to cause a problem when challenged. I'm unconvinced that it's a perfect test, although it is a good starting point for many. I find dietary elim & challenge to be most definitive for my own sensitivities, but then I get really "nice" observable & scorable redness & inflamm reactions to many foods.

    I'm wondering where to go to get more info on serrapeptase & natto. Do you have an author or researcher to recommend? I used Serrapep for a couple of weeks, low dose, with some positive results, however I am unsure whether it can be safely used long-term. The benefits I found quickly disappeared once the enzyme was discontinued. I have some Natto on hand but haven't tried it yet. Do you know whether Natto, like Serrapeptase, 'potentiates' antibiotics? Potentiates isn't really the right word -- the enzymes take out some of the fibrin & other crap that prevents the AB from getting to the cell.

    I got results of an EBV panel yesterday. Waaaay high antibodies, but not a current infection. I've still got the hypergammaglobulinemia, polyclonal. We'd hoped that eliminating food allergens would reduce the gammaglobs, but the effect has not been huge.

    I guess I lucked out, am negative for HHV6. Mycoplasma testing is underway. Haven't done CMV, Parvo or lyme-type testing.

    Thanks for the update. Best wishes.

     
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