Fibrin Monomer Test borderline - what to do?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by allthumbs, Nov 6, 2010.

  1. allthumbs

    allthumbs New Member

    I was wondering if anyone could help.

    I have been doing Dr. T's protocol for over a year and have some things straightened out. For instance, My thyroid is better, as well as Vitamin D levels, iron, B-12 and hormones. I have periods of wellness, but seem to still get bladder, sinus and lung infections. I take prophylactic anti yeast and fluconozole. I have EBV, persistent mycoplasma pneumoniae and mid-grade HHV-6.

    We are about to start a 3 month course of azithromycin. My question is, would the antibiotic treatment be useless without either the earthworm supplement or heparin to dissolve fibrin? What do borderline results mean? The test literally said "borderline" with no values. All other tests of the thrombotic marker panel appear to be within normal ranges. I have had CFS/FM for at least 10 years, probably closer to 25 as some things started in my teens.

    So, with a borderline result, do I need to take steps to dissolve any fibrin? Also, my Dr. says we are running out of options to treat me with. I am very disappointed, nearly heartbroken at this, but on the other hand I am more determined than ever to find the right treatment for me.

    Thank you so much for reading and any insight you can offer! Hugs to you all!
  2. allthumbs

    allthumbs New Member

  3. Mikie

    Mikie Moderator

    Is no longer available in the small vials nor in larger vials for individuals--only for hospital use. What we do have is Lovenox, a low-molecular-weight form of heparin. It comes preloaded in syringes. My co-pay for a month would have been $1,500. Yes, you read that right--$1,500!!!

    I did some research and found that the enzyme nattokinase is even more effective in getting rid of the fibrin. I think it's important because even small amounts of fibrin can trap platelets and provide "clumps" where pathogens can hide out from one's immune system.

    I have had to control almost the same pathogens as you, taking ABX, AV's and transfer factors. Even after all that, I had more Herxing, and Herx-like reactions, when the pathogens, which had been hiding out in these clumps, were dumped into my bloodstream. That was when I was doing the Heparin. I now use the nattokinase with vitamin E and it keeps the fibrin down in my blood.

    An indicator for fibrin for me is my sed rate. If it is low, a two or three, there is fibrin built up in my blood. If it is a more normal seven or eight, all is well. I take the nattokinase every day and so far, it is working like a charm. Benefits are the low cost and not having to give myself injections twice a day.

    Good luck to you.

    Love, Mikie
  4. allthumbs

    allthumbs New Member

    Thanks so much for the reply!

    Ouch, $1500!!! That is not something I can do, even for a few months.

    I have read about Lovenox, that a lot of ladies with infertility or clotting issues take this. In fact, I think I had Lovenox in the hospital profylactically.

    You and I are on the same page! :) I think that even smalll amounts of fibrin can hinder one's ability to heal, too! I just do not want to go through taking the ABX's and not going the extra 10% or 200% with the fibrin inhibitors.

    That is good to know about the sed rate.

    I have noticed that my platelet count has gone down in the last several years. It is around 215,000 (normal 140,000-400,000) at present , but used to be consistently in the 300,000's. I am guessing that clumped platelets can't be counted?

    Thank you so much for your reply!

    :)
    V-tude
  5. Mikie

    Mikie Moderator

    Yes, we are on the same page. I don't think the ABX, AV's, and TF's can finish the job. I will always believe that pathogens are smart enough to actually cause the excess fibrin growth in order to give them a low-oxygen environment in which to thrive and hide out from our immune systems.

    When my sed rate was low, so was my platelet count. It is possible to paradoxically hemmorhage while having thick blood. I did following my facial surgery. That was before I knew about the whole fibrin thing.

    I take the Nattokinase every day, along with 2000 mgs. of fish oil pills. I no longer bruise easily. I figure that with the history of heart attacks on my Mom's side of the family, all this is good for my heart too.

    Best of luck to you. Despite these things having been around for a few years, you are really on the cutting edge of treating our illnesses. Very few PWC, or even our docs, realize just what it takes to heal once we have been sick a long time with a lot of stealth infections.

    Love, Mikie
  6. Jonsparky

    Jonsparky New Member

    Hi,
    I just started Heparin for a 3 month cycle to get rid of the Fibrin sludge. I am a little woozy...
    I tested positive with the Fibrin monomer. I also had a high count on the C4a it is at 6124 with a range of 0-2830, but my C3a is normal. I am also taking Holtorf's Fibirnex which is a fair price, (surprise!) I shop price on his stuff now... I am also taking pharmaceutical Fish Oil EPA-1700 DHA-690 a day.

    I have been going to Holltorf for 4 years, seeing Dr Wightman. I am at the clean out stage, they have helped me a lot!
    Jon
  7. Mikie

    Mikie Moderator

    Is what I called my "mop-up" treatment. It was the last thing we addressed but only because I found out about it after everything else. I do think it is an important part of any regimen to rid the body of chronic stealth infections.

    Love, Mikie
  8. Jonsparky

    Jonsparky New Member

    That was the same experience I had. Even with the all inclusive treatment package of Holtorf's group, it took 4 years to realize there was another step to take! I think we have so many problems to deal with, I had 5 "isms" that when I got those taken care of, I mentioned, "By the way, I still have pain in just about every part of my body...."
    Probably best to do the final mopping up after the infections are under control anyway, otherwise you just end up starting the cycle all over again! For me, the main trigger was out of control Candida, in the gut and beyond. That took abut 2 years to get under control. Years ago I had lived in Mexico, and picked up 3 different amoebas, along with staph infection. I didn't get that resolved until the late 90's. I am just wondering what is hiding, "laying in wait" behind the webs of fibrin? It is like a surprise package!
    Take care,
    Jon
  9. Mikie

    Mikie Moderator

    I agree with you about the wisdom of waiting until everything else has had a chance to work. The Herxing with the heparin was the worst I experienced. If all those pathogens were unleashed while there were still a bunch of them in the bloodstream, there could be danger of a toxic-shock-like Herx reaction. Transfer Factors also can cause some very strong immune responses and, now that I think about it, it may be a toss-up between the heparin and the TF's. I'm doing a "booster" of Transfer Factor 200 right now and am glad I did. My immune response means the TF's are working and waking up my immune system to get rid of any stragglers in my system.

    I have taken probiotics for more than 20 years and, now that I likely have Sjogren's, I've added digestive enzymes. My dry mouth doesn't alowl for enough saliva to provide enzymes to start the digestive process. Since immunity begins in the gut, I try to keep mine as healthy as possible. Still, with the stealthness of many pathogens, it isn't enough.

    Until there is a known cause and a known cure, it will always be something we are dealing with.

    Love, Mikie
  10. Mikie

    Mikie Moderator

    It isn't necessary to spend the $1,500. The store here sells the Nattokinase and it is even more effective than the heparin or Lovenox. It is taken orally so you don't have to self-inject. This reduces the swelling and bruising around the belly from the injections.

    I did a lot of research on the nattokinase and studies have shown it to be effective. Good luck.

    Love, Mikie
  11. inprog

    inprog Member

    You do need a prescription from your doctor and they only sell it in boxes of 10 and it does not cost a $1000 dollars. I have not tried lately. Still lots in my box as I use it slowly. I think I bought my box in 2010. Do an on-line search. Your doctor needs check you for clotting factors every so often. I think my box was around $100 dollars. I pay out of pocket anyway. Health plan won't do this. I will be using Nattokinase/lumbokinase buying alacarte because the doctors formula has something in there that messes up my joints and B.P. Hope this helps you. I did not do well on Fribrinex. It raised BP and affected my joints. That is not true for everyone.

    [This Message was Edited on 02/16/2012]
  12. healing7

    healing7 New Member

    Hi,

    I have gone to Dr Whitman at Holtof clinic since 2003 7 currently March 2012.
    He is overly generous with giving scripts for meds I think & a little loose with medicine in his monitoring your liver & body reactions to meds.

    But he will allow any blood test I want to be tested for so that is important to me.How I found many of my problems!! So I have to research myself & keep up my own monitoring.

    I have spoken to other patients in waiting room who were in ER from say too much Diflucan for Candida!! So if you are sensitive, only take what your body can handle!!

    This was the one & only place that tested for & found my reverse T-3 & dangerous hypercoagulated blood problem. I went to multiple costly specialists with no help they only used antiquated AMA therapy.

    So I did get huge help with T-3 Thyroid, progesterone, testosterone & thick blood!!. I complained about the rude office staff & so did others after I got the courage to speak up. They fired the rude ones year or so ago & have really nice ones now. They do not bill ins, but they will provide all the bills needed, you must go over every detail before you leave there to assure you have what you need if you are lucky to have INS>

    I agree with other posts about too expensive supplements. I buy them at other places. I get my Heparin from www.canadadrugs.com Dr Whiteman fax prescription to them. box of Heparin 10 vials for $474.00
    Takes up to 3 weeks to get. 1 800 CAN- DRUG. He had me to start at 50 1/2 cc. However, I know my body I have to start way small!!

    I started with only 5 units baby tiny dose as I am super duper sensitive. Slowly increased over 6 months to what I could tolerate with hex symptoms. my blood test improved with such little dose he was stunned! Now I am up to 50 1/2 CC. been about a year.

    Did not get to root cause of low immune system, FM etc. I have multiple fungal, bacteria, parasite, viral infections.. BUT I do not give up. They really do not address/test/treat the leaky gut, gluten connection very good, not their specialty.

    I saw DR Michael Valentine, he found t I was GLUTEN, SOY, MILK food allergy intolerance which I see has created my many auto immune diseases!!!! Leaky gut is one main cause of all my above disease caused by gluten grain intolerance. Please see link below if you are interested. That allergy test was near $200 saved my life!! He is sensitive & very caring reasonable, not too expensive like Holtorf! I still buy my own supplements other places, DR Valentine does have some very good ones.
    www.valentinechiropractic.com/doctors-bios.php

    Great info on leaky gut is:
    http://www.glutenfreesociety.org/gluten-free-society-blog/leaky-gut-syndrome-is-gluten-at-the-root/

    Took nattokinase by nutricology, 6 a day for fibrin it worked great! Bringing blood levels & symptoms down.************ I had mini strokes this worked!!!! *********. But was sky high allergic to soy!! So I went off the Nattokinase (soy based-sever allergy) I felt much better! Now I am taking KRill oil, & Cayananne pepper capsules, getting my FIBRIN tested again.

    Awaiting the Lumbrokinase earth worm to come from vitacost to replace what the natto did for Fibrin. I called my compounded pharmacy, found they had lactose in my progesterone, (severe milk allergy) I felt much better off it!! Even got my female vitality back! I found my T-3 meds o,k use wood pulp & not any grain based for fillers & capsules. I have reduced my T-3 from 150 to 75 now, as it is healing leaky gut on the grain free diet.

    BEST NEWS IS I FOUND FROM DR MICHAEL VALENTINE IN COSTA MESA, THAT MY MAIN PROBLEM SEEMS to be from GLUTEN!!!! i HAD STOOL TEST SHOWING INHERITED GENE FROM BOTH PARENTS TO HAVE VERY HIGH INTOLERANCE TO GLUTEN.

    GLUTEN IS IN ALL GRAINS!!! JUST DIFFERENT NAMES for them. SO AFTER i WENT 100% GRAIN FREE, I EAT ONLY GREEN STARCH FREE VEGTABLES/ organic chicken, turkey little fish, i AM SO MUCH BETTER & FEELING AMONG THE LIVING AGAIN. Not planning my cremation, been so sick so long.

    http://trulyglutenfree.co.uk/ explains a lot about grains & causes of CF/ FM all illnesses & testing for it.

    Also, I still see DR Whiteman as very few DR.
    s will use the DR BERGMAN protocall to clean up the blood with Heparin.
    But I am very hopeful with new life, as difficult it is on me to stay home eat only the clean gluten free foods.

    By the way "GLUTEN FREE LABELS ARE FALSE". They contain 40 parts per billion, when FDA admits in only takes 1 part per billion to damage the intestines!! They do not count the other types of gluten in all the other grains, nor if below 40 parts !!!

    God bless you in your healing journey!!
  13. inprog

    inprog Member

    healing7,
    I am sorry I have not been here for awhile and likely you will not see my post here as I see you have not posted for a long while here but maybe someday if you come back. Thank you for your well-written post that is a big help. I was Dr. Holtorf's patient for 4 years and did use the non-low dose heparin (the other one that really is available and not just to hospitals) It does require blood clotting checks every 6 months or so though and I understand the low-dose expensive one does not. They sell that at the clinic at a reasonable price to patients. After 8 years of using heparin with great results, I started to have problems and it may have to do with the biofilm I was not addressing. According to Dr. Holtorf, I do believe that each has its forte, the heparin, does such and such, the lumbokinase does such and such and the nattokinase, such and such; all different and all acting on different phases of the clotting cycle. I wish I could state it as eloquently as he does. It is possible I may have scleroderma as I am having some symptoms. I current see doctor Laufter within that same clinic and have been very happy with their helps. I also have Lyme disease.
    Best of healing and thank you, again for your lovely post here.
    inprog