Guest guest Posted January 21, 2000 Report Share Posted January 21, 2000 I just wanted to let you all know that I FINALLLY got the hypercoag test from HEMEX lab. All my coag factors were VERY elevated. For example fibrinogen - average for controls was 180, average for CFS/FM was 350 (from memory), mine was 400! Almost all my levels were high even compared to other PWCs. NO WONDER so many things work for others that don't work for me! With blood that thick and sticky an aspirin and Ginko just ain't gonna cut it. Berg says that when you have hypercoagulation at such a severe level you probably aren't going to be able to counter with natural supplements (at least in anything less than a year). (recall that I got all the Gulf War vaccinations - Berg said this probably caused such high activation in me) If you've read the info at www.hemex.com you will see that the issue is not JUST thick, sticky blood, but that fibrin is deposited on the walls of the capillaries (DIFFERENT from atherosclerosis). This makes it more difficult for blood to get to the tissues and for nutrient to diffuse across the vessel walls into the tissue cells. (and for toxins to diffuse out) ALSO, bacteria and viruses " stick " onto the vessel walls and get covered with fibrin so that your immune system can't " see " them. the fibrin also decreases the amount of oxygen that gets to the tissues. So, even IF you manage to thin the blood, if you have lots of deposition (which I do), then you will see little effect from the thinned blood unless and until the fibrin deposits dissolve - and this can take MONTHS, even if you are taking heparin. Also, some people have some sort of genetic defect, that once the fibrin is deposited, they cannot dissolve it. At the moment these people may be SOL. I went ahead and ordered the genetic tests to see exactly what challenges I have to overcome. I will have to wait another week or so for those results. I can't get a doc in Denver to treat this, so will visit the doc in the desert for treatment. FYI - my sed rate was NOT low (0-3) - I think mine was 12. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2000 Report Share Posted January 21, 2000 I tend to believe that all of the best researchers are the blind men describing the same elephant (I won't comment who is feeling where the sun don't shine)... Prof.Nicolson finds that long course antibiotics are need or else relapses happen -- and your explanation below appears to reinforce that. I wish the two would cooperate with each other and have some of Prof. Nicolson patients have the ISAC panel periodically on the abx treatment, and have some of Dr. Berg's patients tested periodically with PCR -- the results could be very interesting... Of course, getting some of Cheney's Whey patients tested for ISAC and for PCR to see what the effect is on both of those measurements would be the ideal completion! Ken, Mr. PlayItSafe (Whey, Antibiotics and Anticoagulant (Bromelain) - the Whole Trinity ) ---- Original Message ----- From: Skari, M ALSO, bacteria and viruses " stick " onto the vessel walls and get covered with fibrin so that your immune system can't " see " them. the fibrin also decreases the amount of oxygen that gets to the tissues. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2000 Report Share Posted January 23, 2000 In a message dated 1/23/00 3:31:52 AM Eastern Standard Time, onelist writes: > and I think it is normal for everyone to be somewherebetween > hypercoagulation and being a hemopheliac.[Patti:] Uh... duh! Just like there > is normal variation on the CMI/HMIspectrum, its just when you get too close > to the extreme ends that you haveproblems. First of all, this message from Patti came thru in the digest form very strangely. The format was completely different and came in continuous prose instead of broken into paragraphs as Patti's well written messages usually are. OK, now my response to the 'duh' comment. Here is what I mean. The NORMAL healthy population has various 'thickness' of blood thereby giving different people different sed rates. Where is ANY proof that hypercoagulation causes any symptoms? It could easily be that aspirin, bromelain and other blood thinning agents are simply lowering nitric oxide, and not thinning blood. The idea that the little bug that is at the center of CFS is 'hiding' in the fibrin caused by the thickened blood seems only remotely plausible. For those without thick blood, where is their little bug hiding? This is my THEORY and since so few respond positively to aspirin, ''thick blood' could be a problem for only a very small subset of PWCs. Look, everyone wants to think, " hey, this is my problem so it must be everyone else's " . Well, it's not. And to make statements that purport to say, " take care of your thick blood and you will get better " misleads a lot of folks. If you want to fully disclose that blood thinning may be effective for only a few, I have no problem with that. Since I'm going to get flamed anyway, I also think that Hemex will go down as a footnote in the struggle to find a treatment/cure for CFS, being akin to the company that brought us that wonderful treatment Enada NADH. Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2000 Report Share Posted January 23, 2000 In a message dated 1/23/00 1:32:06 PM Eastern Standard Time, onelist writes: > mike have you been to the hypercoag site? I am naturally skeptical but they > seem happy with their results. I have tried various levels of aspirin and > never had any results -- but I hate to argue > with success Steve, are you referring to the Hemex site? I plan on reading it again. Nobody, however, has addressed my point that aspirin MAY be reducing nitric oxide (NO) levels. Has anyone done a Medline search with 'aspirin and nitric oxide'. I bet there is something there. As said before, NO is really being studied more and I would BET (don't want to argue) that more people are eventually helped by reducing NO than hypercoag. However, I would NOT discourage anyone from trying a trial of aspirin/bromelain or getting the hypercoag test. As Ken has said, for $300 you can find out IF a treatment MAY help. Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2000 Report Share Posted January 23, 2000 mike have you been to the hypercoag site? I am naturally skeptical but they seem happy with their results. I have tried various levels of aspirin and never had any results -- but I hate to argue with success. I have been having good luck getting my brain going with klonopin,neurontin, amantadine, and ritalin. But getting my body going is another problem. With human growth hormone and testosterone I have good physical strength but still I have little physical energy of endurance. As far as history is concern much of what we do will be seen in a similar to the practice of bleeding in the 17th century. Unfortunately we live in the present & must muddle through the best we can. MCamp10139@... wrote: > From: MCamp10139@... > > In a message dated 1/23/00 3:31:52 AM Eastern Standard Time, > onelist writes: > > > and I think it is normal for everyone to be somewherebetween > > hypercoagulation and being a hemopheliac.[Patti:] Uh... duh! Just like > there > > is normal variation on the CMI/HMIspectrum, its just when you get too close > > to the extreme ends that you haveproblems. > > First of all, this message from Patti came thru in the digest form very > strangely. The > format was completely different and came in continuous prose instead of broken > into paragraphs as Patti's well written messages usually are. > > OK, now my response to the 'duh' comment. Here is what I mean. The NORMAL > healthy population has various 'thickness' of blood thereby giving different > people > different sed rates. Where is ANY proof that hypercoagulation causes any > symptoms? It could easily be that aspirin, bromelain and other blood > thinning > agents are simply lowering nitric oxide, and not thinning blood. The idea > that the little bug that is at the center of CFS is 'hiding' in the fibrin > caused by the thickened > blood seems only remotely plausible. For those without thick blood, where is > their > little bug hiding? This is my > THEORY and since so few respond positively to aspirin, ''thick blood' could > be > a problem for only a very small subset of PWCs. Look, everyone wants to > think, > " hey, this is my problem so it must be everyone else's " . Well, it's not. > And to > make statements that purport to say, " take care of your thick blood and you > will > get better " misleads a lot of folks. If you want to fully disclose that > blood thinning > may be effective for only a few, I have no problem with that. Since I'm > going to get > flamed anyway, I also think that Hemex will go down as a footnote in the > struggle > to find a treatment/cure for CFS, being akin to the company that brought us > that > wonderful treatment Enada NADH. > > Mike > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2000 Report Share Posted January 23, 2000 > Nobody, > however, has addressed my point that aspirin > MAY be reducing nitric oxide (NO) > levels. Has anyone done a Medline search with > 'aspirin and nitric oxide'. I believe DW has. I haven't been to his site in awhile, but I'm sure he has lots of info and abstract links on aspirin and NO. (He has links on how just about everything affect NO. The latest I think is that glutamine decreases NO) If I remember correctly he says one way to tell if you have an NO problem is to take 5 aspirin and see if you have a noticeable difference in your symptoms. Also aspirin is recommended in some of Berg's protocols. I think some people are started on heparin and later maintained on aspirin. If I understand Berg correctly, his main treatment suggestions are heparin, coumadin, warfarin and aspirin. Each of these target a different aspect of the hypercoag immune cascade and are suggested based on which specific parts of the cascade have gone awry. > BET (don't want to argue) that more people are > eventually helped by reducing > NO than hypercoag. This could very well be true. I think DW talked about some research that shows some substances decreasing NO in the brain but increasing it in other parts of the body. So it may not be a matter of increasing or decreasing NO, but of WHERE NO should be increased and where it need to be decreased. Patti -- Angelfire for your free web-based e-mail. http://www.angelfire.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2000 Report Share Posted January 24, 2000 I remember DW recommended also Plaquenil for decreasing NO Stania >From: " Patti Skari " <merlion1@...> >> Nobody, >> however, has addressed my point that aspirin > MAY be reducing nitric oxide (NO) >> levels. Has anyone done a Medline search with > 'aspirin and nitric oxide'. > >I believe DW has Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2000 Report Share Posted January 24, 2000 just say no to NO Stanislava Mužíková wrote: > From: " =?iso-8859-1?B?U3RhbmlzbGF2YSBNdZ7ta2924Q==?= " <stanislava.muzikova@...> > > I remember DW recommended also Plaquenil for decreasing NO > Stania > > >From: " Patti Skari " <merlion1@...> > >> Nobody, > >> however, has addressed my point that aspirin > MAY be reducing nitric > oxide (NO) > >> levels. Has anyone done a Medline search with > 'aspirin and nitric > oxide'. > > > >I believe DW has > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.