I'm Starting Nattokinase

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Nov 4, 2008.

  1. Mikie

    Mikie Moderator

    Some of y'all may remember that I did Heparin injections a couple of years ago and they really helped me to rid my body of excess fibrin and clean up pathogens which had been hiding out in the fibrin clumps. It is believed by the experts that it is the pathogens themselves which cause the body to produce the fibrin in order to give them a place to hide from the immune system and to provide a low-oxygen environment in which they thrive.

    A year ago last July, I got Klebsiella Pneumoniae and it had started to go into pneumonia when the doc caught it. I eventually got over it but then, I had a series of UTI's which cultured as the Klebsiella. I finally got the UTI's under control but got severe food poisoning. It was from hamburger and there is a possibility it was e-Coli but we will never know because the doc was anxious to get me on ABX immediately and didn't wait for a stool sample or blood tests. It took a while but I eventually got over that too.

    Recently, I have noticed numb spots, tingling, and pain in my lower legs and feet. My last SED rate was 1. This indicates to my doc and me that the hypercoagulation from excess fibrin may have returned.

    Becuase the Chinese contaminated Heparin used in the large vials in hospitals during manufacture, there are no small vials availalbe. They are all being used by institutions. The alternative, Lovenox, comes preloaded in syringes. My doc ordered it but when the pharmacy called, I found my co-pay for injectibles is 33 percent. That was more than $400 for the first month. I would have hit the donut hole in my part D Medicare and would have had to pay about $1,500 for the next two months.

    Since that is out of the question, I ordered some Nattokinase from ProHealth's store here. I started taking it today. According to my research, it is as effective as the Heparin/Lovenox and a lot safer. In the past, I haven't done well on enzymes because they had to be taken on an empty stomach. The nattokinase is taken with food and so far, I have had no problems. In fact, the enzymes should assist digestion.

    I'll let y'all know how it goes with the nattokinase. I will take it for three months and see how the leg/feet symptoms are doing. Then, my doc and I will do another SED rate to see whether it has gone up a bit. My insurance would never pay for the ISAC panel, so we are doing this empirically.

    Love, Mikie

    LEFTYGG Member

    i see this is made from soybeans. will the soy cause any hormone problems.

    this sounds like a good supplement. love gail
  3. Mikie

    Mikie Moderator

    The nattokinase is a "last resort" treatment option. I doubt I will have to take it more than three months. It is supposed to clear the fibrin. I am taking Acyclovir and Doxycycline to help clear the pathogens as they are exposed to the bloodstream and immune system. My biggest fear is that the soy could block my Guai.

    Most docs are thrilled when the SED rate is low, but a very, very low rate could indicate excess fibrin. For me, that, combined with the tingling, pain, and numbness in my feet and lower legs, is a signal that the pathogen overgrowth has caused my body to produce the fibrin.

    Guess we'll just have to wait to see. Thanks again for your interest.
  4. bct

    bct Active Member

    Hi Mikie, I hope the natto helps you! I used to heaqr a lot about the use of Bromelain for fibrinolysis, but haven't seen it mentioned lately. I believe it was SUJAY who was using it in her practice for hypercoagulation, but may be mistaken.

    My question for you is how much doxy you are taking, and for how long. I have doxy available at all times, but only use it in case of divertic flares, which are seldom. So I've got a lot of doxy! I've been thinking of doing a course of it; I understands some CFSrs really benefit from it, even if they have no known infections. What do you think?

  5. Mikie

    Mikie Moderator

    Thank you both for the feedback.

    Kelly, I had to stop taking it just until we find out why my blood pressure has skyrocketed. I am having headaches and retaining fluid. The Natto should actually help the situation. After my food poisoning, when I had nonstop diarrhea for three weeks, my potassium got low. I am thinking this is causing the high BP. I have a call into my doc. I am supplementing with the potassium supps to see whether it will help. As soon as I talk to the doc's office, I will probably go back on the Natto. I tried the bromelain before but it was too hard on my stomach. The Natto is supposed to be taken with food and it doesn't bother me. I'm glad to hear that the Natto helped you, even if it didn't help as much as you would have liked it to. Thanks for the info.

    Barry, yes, it was Sujay who used Heparin in treating patients. Bromelain was an alternative. My CFIDS was triggered full blown by a mycoplasma infection. At the time, no one knew just how long one had to take ABX to beat the bacterium into latency, so mine went chronic and stealth in my system. I was on the Doxy for 2 1/2 years before we were able to get it controlled. If I get run down or sick, it will try to reactivate and I will usually do a week or two on the Doxy to get it back under control. I keep the Doxy around all the time. I take 100 mgs. twice a day. When the fibrin dissolves, the pathogens are exposed in the bloodstream and taking an AV and an ABX helps the immune system to control them before they can invade host cells. I took Acyclovir and Doxycycline when I started the Natto and on the third day, I had a Herx, or Herx-like, reaction. It is almost always on day three for me. BTW, outdated Doxy is toxic so we have to always make sure it doesn't get old. My IBS cleared up when I started taking Doxy. Interesting!

    I'll let y'all know what I find out from the doc. Thanks again for your input.

    Love, Mikie
  6. tansy

    tansy New Member

    Hi Mikie

    Once one has obtained a degree of symptomatic relief through treating ISAC, as described by David Berg at Hemex, one becomes aware of when this problem returns so I think you are wise to give natto a try. Natto worked for me: post operatively I used it alongside serrapeptase since the latter can also help prevent the formation of scar tissue a known possible complication of the procedure I had.

    Natto is generally safer to use and I have never had any bleeding problems despite having had low platelets/thrombocytopenia. I did take mine on an empty stomach though.

    tc, Tansy

  7. Mikie

    Mikie Moderator

    Kelly, my BP fluctuates, but I take it throughout the day. The systolic is anywhere from low 130's to low 150's. Diastolic is anywhere from the 80's to low 90's. Used to be in the 120's over the 70's.

    I still haven't heard from the doc's nurse. Two docs left the practice and I know they are swamped. All the Snowbirds are bringing colds and viruses down with them. Oy! I'm hoping the potassium, and magnesium, will help. I'll call in again tomorrow. I'd make an appt. but I really don't want to sit in their Petri dish of a waiting room. It's bad enough that they come through my lines in the store.

    Tansy, I wish I could take the Heparin or Lovenox injections, but the Natto appears to be a safer alternative. It should eventually cause my BP to go down. I've gone back to taking it because not taking it didn't affect my BP at all. Perhaps the potassium will do the trick. It was low when I had my blood work done. I imagine all the diarrhea from the food poisioning caused that.

    Thanks again for your input. Keeping you, and everyone here, in my thoughts and prayers.

    Love, Mikie
  8. Waynesrhythm

    Waynesrhythm Member

    Hi Mikie,

    Just a note this morning to thank you for this post on using Nattokinase for fibrin buildup (which I believe results from your ongoing low-grade mycoplasma infection). Having been recently diagnosed with several different types of Lyme bacteria, it is a timely subject for me. I just read in a bood entitled, "Beating Lyme Disease", by David Jergen, the following:

    "When the Borrelia burgdorferi are in their L-form phase, the morphology (appearance) cannot be distinguished from that of Mycoplasma organisms."

    Apparently, at any given time, about half the Lyme bacteria are in their L-form (which I believe means it is at a stage where it has no cell wall). Even though this particular book does not have fibrin listed in the index, I believe it is a very important thing for me to address. I suspect it could also an important thing for many others on this board to address as well.

    I seem to remember you mentioned a really interesting (and important) thing about mycoplasmas on one of your posts in the past. It might have had to do with their life cycles or something like that. I'm hoping that by bumping up this post, you might end up repeating some of this information.

    Thanks for all the information you post. Not only is the information valuable, but your methodical approach to addressing your health issues is a good example for many of us as well. Do you have a Nattokinase update for us?

    Kind regards, Wayne[This Message was Edited on 12/02/2008]
  9. Mikie

    Mikie Moderator

    I am so sorry to hear about the Lyme. I hope your doc has a good plan to treat it. Thank you for your kind words. Everything which has helped me is something I first heard about on this board so I try to keep the info going. It might help others.

    Mycoplasmas and Lyme have some things in common and one is that the bacteria are cell-wall deficient. You are correct in that they cannot survive in that form and must invade cells in the body in order to replicate. When they are in the bloodstream, before they have infected cells, they are vulnerable to the ABX. Both mycoplasmas and Lyme can deposit cysts deep inside the body's tissue and these cysts can reactivate when one becomes run down, has surgery, gets sick, or is injured. Lyme can also, like Syphlis, be in the form of spirochettes. I do not believe this is the case with the mycoplasmas. The half-life of mycoplasma DNA is 24 hrs. If one has PCR DNA testing done, it must be done within 24 hrs. of the blood's being drawn or half the DNA is too degraded to be of value. I do not know the half-life of Lyme.

    From the research I have done on the fibrin problem, any chronic infection in the body can cause the excess fibrin in the blood. I see my specialist on Fri. and will likely see him again in another six weeks or so. I am doing really well on the Natto. It isn't upsetting my stomach, so I am tolerating it well. The numb area on my lower leg is all but gone and so is the pain and tingling in my legs and feet. My BP is still elevated, though, and I'm seeing my PCP on the 12th to address that. Moderately high BP runs in our family and my guess is that I've just reached the age where it has become a problem for me. I'm hoping to wait on BP meds until I do another six weeks on the Natto, but I don't want to take a risk with the BP either. I'll let y'all know what the docs have to say.

    Please let us know how your Lyme treatment is going. The HEMEX Lab website used to have a lot of info on the fibrin issue. If you search on Nattokinase, you can find more info.

    Love, Mikie
  10. findmind

    findmind New Member

    So glad the natto helps you.

    I have a question: what kind of dr. do you have, that will first, know about this stuff, and second "treat you empirically"?

    I had either a sonogram (fast scan of my legs) or something on my legs, which are cold, numb, tingle, hurt, all of it. It was "normal", with doc saying "for your age, they look great!" of all things.

    I have had simple clotting factor tests done (Fibrin 1?) because of a bleed in my eye, these too were "normal".

    What test(s) can I TELL (shouting at him works really well) my PCP to do that might show the fibrin problem? I too, have had PCR testing that showed 3 mycoplasmas, as we've discussed before, but I have not asked my new dr. anything about this.

    Or, should I just try the natto to see if it help me? if so, I'll order it now.

    So proud of your courage thru all of these terrible "other" illnesses and your striving to feel better...and may you fully recover and just have the "normal" HBP, LOL!

    Love and hugs,
  11. Mikie

    Mikie Moderator

    First, thank you for your kind good wishes. I really appreciate them. I hope and pray you can get some help for your legs.

    It was my original PCP who was happy to treat me empirically if I would do the research and bring my findings to him. He understood the problems with getting HMO's to spend money on expensive tests. If you go to the HEMEX Labs website, I believe they have info on the ISAC panel of tests for fibrin.

    I heard a doc, a physiatrist (a doctor of physical medicine) who spoke at a meeting on FMS at our local hospital. He had become quite knowledgeable about FMS and CFIDS because he had so many people coming to him with pain whose lab tests were "normal." He became my specialist for these illnesses. He was the one who prescribed the Heparin after I showed him all the info on infection and the fibrin connection. Unfortunately, Heparin is no longer available by Rx and the Lovenox costs about $1,500 a month. The Nattokinase sold here also contains vitamin E. I do think it a good idea to let one's doc know if one is going to take something like this. I found info on treating fibrin with Natto online and gave it to my doc.

    I have a different PCP but he knows my specialist and trusts what we are doing. He has been so good about continuing my prescriptions. The good thing about treating empirically is that one can see the improvements without having to go through all the testing. My docs have been very impressed at my improvements, even though it has taken years. They have seen patients who never improve or even get worse. This helps to get their cooperation. It also helps their other patients who might be helped by what has helped me. Most docs, especially PCP's, have no idea of what our illnesses entail and even less of a clue as to how to treat us. Of course, nothing works for everyone but at least, it gives them some options to try.

    I was lucky that I stumbled on my specialist and that I have had PCP's willing to help. I know the Natto is helping but it isn't as dramatic as the Heparin. Actually, I prefer this as it isn't as disruptive to my system. It may take a bit longer but it seems to be just as effective. The research I have read online suggests that it is even better than the drugs. I am not having bruising or bleeding problems on the Natto either. So far...so good.

    Again, best of luck to you. Let us know what you find out.

    Love, Mikie
  12. Waynesrhythm

    Waynesrhythm Member

    Dear Mikie,

    Thanks so much for your helpful post and information. Your mentioning that mycoplasmas and Lyme can deposit cysts deep inside body tissue was the piece of information I was trying to recall, so I’m glad to familiarize myself with that piece of information again.

    I got tested for Lyme just before leaving Oregon in September and found out the test results in early October. I’ve not been back to Oregon yet, so have not had a chance to discuss my treatment regimen with my ND yet, though he did say he would try to treat it without antibiotics if I tested positive.

    Thank you also for your “condolences” regarding my Lyme diagnosis. I still have not completely sorted out yet how I feel about it. In some ways it feels like a relief, knowing for years I’ve had 80% of Lyme symptoms (especially serious cognitive issues), but always testing negative on traditional tests. It is concerning to me however that much damage has been done that will likely be hard to reverse. Having this knowledge however will allow me to focus on possible therapies that should be beneficial.

    Then there’s the issue of having a Lyme diagnosis and wanting to share my experiences on this board. In the context of having had a diagnosis of CFS for many years, I feel it would be quite pertinent and appropriate to post freely about it. But with the Lyme situation as it is here on this board, I almost feel like an outcast, and feeling the need to be quite circumspect in my posts so as not to offend others or even the moderators. Sigh.

    Congratulations on your doing so well on the Natto. It’s sounds pretty miraculous that you’ve been able to dramatically reduce the numbness, pain and tingling you’ve been experiencing. Best of luck to you on addressing your BP concerns. It seems I’ve read so many good therapies in the past for high BP, but having had more of a problem with low BP, I can’t remember them at this time. You’ve probably read about and tried many therapies already. Sometimes our genes just end up having the final say. Not sure if that’s fair or not! :)

    Thanks for the heads up on the HEMEX Lab website. I’m going to plan on doing some research over there. Thanks again for all the information and the update on the Natto. It seems highly likely I’ll be moving in this direction once I get back to Oregon.

    Best, Wayne
  13. dannybex

    dannybex Member

    Hi Mikie,

    Before I saw your post, I just posted on the old 'klonopin tapering' thread...wondering how you are doing? You might want to click on my name/posts to find that thread. :)

    But now seeing here how your tingling/numbness is better, and you're taking the natto, do you think it was a circulation-related neuropathy...or what? I was thinking perhaps it was a symptom of tapering off the klonopin (which is what I've had off and on during my taper.)


    Glad to hear you're doing better!


    p.s. Someone asked if natto was a problem because it is made from soy. It's my understanding that it doesn't affect the thyroid, etc., because it's made from FERMENTED soy.

    And you can get it at health food stores, in little tubs. People have described it as tasting bad, but I think it just tastes kind of salty...like soy sauce! Except that it's thicker and I usually thin it down with water. Makes a nice 'gravy' for potatoes, rice, etc.
  14. dannybex

    dannybex Member

    In my p.s., I confused natto with MISO. Miso, also made from soybeans or fermented rice, has a salty taste. Whole natto, which usually comes frozen at asian grocery stores, does taste kind of 'funny', and is very sticky, gluey. :)
  15. Mikie

    Mikie Moderator

    Wayne, I think that GWI, Lyme, and CFIDS/ME have so much in common that it is virtually impossible to separate us into defined categories. It is the Lyme bacterium which caused you to get sick; it was the mycoplasma which caused my illnesses to be triggered full blown. The treatment for Lyme and mycoplasmas is basically the same.

    BTW, I have heard of people who have reached full healing and they, too, feared that there had been too much damage to ever recover fully. They have even recovered all their memories and no longer have the cognitive issues. Sooooo, I don't think we should give up on recovery. I always said if I were 80 percent of where I was before getting really sick, I would consider it a success. Many days, I reach that 80 percent, but I simply cannot sustain it continually. I only work three days at a time before I take a day off to rest. I also never work more than six hours a day. As my healing progresses, I am able to do more and more for longer periods.

    This last year was especially hard due to having picked up the Krebsiella Pneumonia with the walking pneumonia for weeks, even with the ABX. Then, it went into chronic UTI's with the same Krebsiella as the culprit. Finally, I got the food poisoning and we never tested to see what it was. It was from beef and I do suspect e-Coli due to the severity of symptoms and length of time to recover. I still occasionally have pain near the organs in my midriff area. Thing is that I continued to work throughout most of this and I recovered about as well as a "normal" person would. I'm not sure a "normal" person would have had so much infection but, at least, it didn't make me bedriiden again. I am getting better. Sometimes, we have to look back a bit to see how far we have come.

    I hope and pray for your recovery. I think it's a good thing to have a diagnosis so you and your docs can be more specific in how you are treated. It is my feeling that people with Lyme have CFIDS...a rose by any other name... Again, best of luck.

    Danny, once again, I had to resume my 1 mg. dose of the Klonopin. It's strange but this time, I never got the jitters when I got to 75 percent of my dose. Unfortunately, I had a lot of pain and was being overtaken by exhaustion. The dark circles under my eyes confirmed that I wasn't sleeping well without the Klonopin. My specialist said that Klonopin really helps with pain and that is why the pain was so bad. All this time, I had credited the Guai with relieving my pain. The Guai does work for me, but it works with the Klonopin to address the pain. I simply cannot continue to work without adequate sleep and pain relief. Sooooo, I'll try again later on as my healing continues. At some point, I may be able to wean off of it. If not, I'm prepared to take it for the rest of my life, if necessary.

    The Natto is made from soy but I don't believe there is concentrated soy in it because it doesn't block the Guai. That was my biggest fear. When the Guai gets blocked, the pain comes raging back.

    Wayne and Danny, thank you both for your interest. I am seeing my specialist tomorrow morning but I doubt he will have much to say except to keep on the Natto and watch for any bruising or bleeding. The legs just feel better and better. I have started wearing the support knee-high hose/stockings which are supposed to help with circulation. They really do help my legs to feel less fatigued after standing at work. Honestly, I never thought I'd get to this point even while I was hoping and praying for the healing. I am so very thankful that the treatments have helped. I hope at least some of what has helped me will help others. It seems to take a whole orchestrated treatment regimen for us to heal. It has to be tailored for each of us.

    In the meantime, we are just as suspeptible as the "normal" people to the conditions which come with age and genetics. I am eight years older now than when I got too sick to work and had to just stay in bed. In view of this, I feel especially blessed to be doing this well. I pray for all of us every day because I know how hard it is to attain and maintain our health.

    Love, Mikie
  16. Mikie

    Mikie Moderator

    He is pleased with the progress on the Nattokinase. He said I don't need to come in again unless there is a change or problem. My PCP can take it from here. I see him next week. The big question is how long to take the Natto. The one I bought from here has vitamin E in it so I am carefully watching to ensure I don't start bruising or bleeding easily. I suspect in another six to eight weeks, my PCP should run another SED rate. In many cases of excess fibrin, the SED rate is an early indicator, although it isn't definitive. It certainly seems to corrolate with the symptoms I have when it drops. There also seems to be a relationship to whether I've had a lot of infection in my system. This last year has been unusual for difficult infections.

    As a side note, my doc today asked me whether I still have any pain in the midriff or rib area from my food poisoning. Strangely, I ocassionally do have pain which seems to be internal. I was concerned that the food poisoning had damaged some organs. My specialist said one of the strains of e-Coli can damage the organs and he suspects that may have been what I had. It appears that I am healing from the poisoning episode and it may just take some time. I'm not in pain every day and it's unusual for it to still bother me so I'm hoping there was no permanent damage.

    Love, Mikie
  17. Jude

    Jude New Member

    Hi Mikie

    The soy will not block your guai so you don't have to worry about that. I've been waiting for this board to get the search feature straightened out as I don't have time to read every message. So I reply to very few messages. In 2005-2006 I used heparin for a different medical issue, completely unrelated to FMS. Is it not available at all in this country now?

  18. Mikie

    Mikie Moderator

    Good to see you posting. I figured the Natto, made from soy, would not block the Guai and it hasn't. I'm glad for that.

    The large bottles of Heparin, made in China, were contaminated and several people died. The FDA banned it. The pharmacist told me that the small vials, formerly used by patients, are now being used in hospitals and clinics so that none are available for patient use. Evidently, it was only the large commercial bottles which were contaminated. Lovenox is considered a better form of Heparin-low molecular weight-and most hospitals are using it now, even though it is more expensive. The Lovenox available for patient use is pre-loaded into the syringes and is very expensive. It's the only form available to patients.

    Sooooo, my choice was to pay between $400 and $1,500 a month for the Lovenox, depending on where I am in relation to the "donut hole" in Medicare Part D, or taking the Natto. I'm glad the Natto seems to be working. The research I did indicated that the Natto was just as effective as Heparin or Lovenix and is cheaper and safer. I don't take the full dose described on the bottle. That way, I can control how severe the detox and purging are as the fibrin is more slowly dissolved. It may take longer this way but it allows me to do the treatment without missing work.

    I'm having some kind of reaction today. It feels like the start of a Herx or purge/detox but it could also be my immune system fighting off the colds going around. After I saw the doc and shook his hand, he told me he had a cold. Oy! There are so many sick people coming through my lines at work too. Sometimes when I'm around someone who is sick, I get like this as my own immune system goes on a killing spree.

    Again, it's good to hear from you. Thanks for the heads up on the Natto and the Guai. I recently tried to wean off the Klonopin and I had some severe FMS pain. I had always assumed that the Guai was the only thing handling the pain. My specialist told me that the Klonopin stops pain messages in the brain. Even if I increase the Guai, it doesn't have any effect. I just do my maintenance dose. Between the Guai and the Klonopin, I am doing well with little pain most days. If I get run down, sick or injured, the pain can return. Still, I regard the Guai as a God send in my overall treatment regimen.

    Love, Mikie