To lisapetrison

Discussion in 'Fibromyalgia Main Forum' started by wld285, Oct 10, 2006.

  1. wld285

    wld285 New Member


    Iwould be very interested about yourTeitelbaum experience.

    Did you go to Fcc, or did you do everything on your own? I am interested to know about hypercoagulation, how it was treated and the outcome.

    Hope to get some pointers from you.

    Thanks!!!!
    Linda
  2. wld285

    wld285 New Member

  3. Slayadragon

    Slayadragon New Member

    This is so frustrating, because I spent about 90 minutes yesterday detailing _everything_. I'm happy to answer whatever questions you anyone has, but I just don't know what happened to the post.

    I've never seen Teitelbaum, but I've been to a number of doctors who are specialized in or extremely knowlegeable about this illness over the past years. We've discussed basically everything in the book, and I've tried literally everything except about four of the substances (and except the wide range of possible antibiotics...I obvioiusly don't use those unless I need them for something specific) over the past 11 years.

    I think of Teitelbaum's book as a "Textbook 101" for the disease. It's not that the book is the "answer".....it just compiles all of the current theories about the illness, along with all the treatments that have been hypothesized to work, in one place.

    Hypercoagulation is something that I looked into about 8 years ago. (My doctor at the time specialized in hormones but had CFS herself---she worked with a few patients by telephone from home---and so knew about such things early.)

    We talked briefly about the theory. She said that if I were going to do this for very long I could get tested, but in the meantime I could try the heparin shots for about two weeks and see if they helped.

    She said that generally speaking, she had found that if you get large bruises at the place where you insert the shot, you probably do not have coagulation. The bruises should be no larger than pea-sized, I think she said.

    She also said that she thought that hypercoagulation was exacerbated by food allergies and that if she used the shots directly after eating a food to which she was allergic, she would feel better.

    I tried the shots as directed. The bruises were smaller than pea sized. However, I noticed a very slight if any improvement regardless of when I took the shot (e.g. just after eating allergic foods or any other time). Aspirin gave me about the same effect, which is to say a minimal one.

    Based on that experience, we didn't do the test and I discontinued the drug.

    Based on what I know of CFS and my heparin experience, I think that hypercoagulation is one of the many things that go wrong with the body as a result of the disease, but that it is not at a root cause of it.

    It may be that I might have indeed been helped somewhat by measures for hypercoagulation but that this relatively small improvement was masked by other more major factors, specifically (I now believe) my extremely high viral load (as measured on a new state-of-the-art test).

    Perhaps if I were to get rid of the viruses, I would note a higher improvement from using the heparin.

    Then again, maybe if I were to get rid of the viruses, the hypercoagulation would go away on its own. It seems possible that it's being caused by a virus, not yet identified by researchers, that CFS sufferers tend to acquire easily. (This is based on a related conversation that I had with my CFS doctor just last week.)

    Strictly hypothesizing, if this is the case, then it's possible the some CFS patients have extremely high infestations of this virus (and thus benefit substantially from the heparin) while others have lower infestations (and thus benefit less.

    Of course, if this is the case, then it is possible that individuals will sometimes benefit a great deal from heparin (when their loads of this particular virus go up) and less at other times (when other viruses have taken over). If so, it might be useful to try the heparin (or have the test) repeatedly over time, since the usefulness of anticoagulants might vary.

    It's hard to tell at this point in CFS history.

    Personally, I now am limited with regard to heparin since I have developed a latex allergy that prevents me from having shots if the needle is passed through a rubber stopper in order to access the liquid inside the bottle. (Too many of such shots over the years was the cause of the latex allergy, by the way.) I may experiment with aspirin again to see if it seems to make a difference, although I'm hesiitant since that could increase intestinal permeability (which, especially considering my multitude of food allergies, may be more important).

    Does this make any sense? My mind is running slow so far today.

    I just got a response from the board staff saying that none of my posts have been deleted recently. I gave them some information on this post and the thread. Perhaps they will find it and put it back up.

    Please let me know if you'd like my experiences on anything else. I'm happy to give you my thoughts.
  4. cherylsue

    cherylsue Member

    Very interesting theory about viruses and some we don't know about.

    I always suspected my sudden onset with an awful viral illness that put me in the hospital in 2000 began with babysitting two toddlers.

    My brother had friends that were visiting from an army base in Kentucky (lots of kids and viruses there) and asked my to babysit the guests' two toddlers while they went to a Sox game. I was changing dirty diapers all day. I felt very tired that day and I was dragging for a few weeks when BAM this whole thing started. I always suspected I picked up something from one of the kids who was slightly sick.

    I thought it was CMV and had the purple tube top PCR test done at the Univ of Chicago. Negative. But when I talked to the lab technician she said there was a remote chance I still could be positive.

    Who knows? But I definitely feel the malaise and fatigue of viral discomfort even as I write. I feel a virus is just dragging me down. How do I reduce this viral load?

    The only thing about virals is that after awhile, they don't work anymore. Valtrex loses its efficiency.

    However, it's worth trying if your doctor agrees. Keep me posted.

    CherylSue
  5. Slayadragon

    Slayadragon New Member

    I don't think of the idea that there are viruses that we don't know about as a theory---it's just plain common knowledge. For example, it took about 2 years for scientists to find the AIDS virus, and they knew they were looking for something. Plus the best scientists in that field in the world were racing to try to find it so that they could get famous. (Read or watch "And the Band Played On" if you want more history on this.) So obviously there are other ones that haven't been found that no one haas been looking for. A lot of scientists now think that viruses are one of the key components--along with lifestyle and heredity--that cause almost all diseases, including things like cancer, heart disease and obesity. It takes a lot of work to find them, though.

    I don't know why people don't talk about this with regard to CFS. This field is really screwed up.

    After that Stanford guy presented his results on the "risen from the dead" patients with the use of Valcyte, my doctor has been giving it a try. He said he's put 18 people on it in the past 3 months and has had really good success. He's also had success with famvir and amantadine. I'm going to shortly be trying Famvir, and if that doesn't work, valcyte. I will post the results on this board. (He used to do transfer factor, but seems to have moved on from that for the most part. I tend to think everything but the prescriptions are pretty wimpy for this disease.....it's as serious in its own way as AIDs, even though cleverly it doesn't actually kill you.)

    I think the most revolutionary thing to happen to CfS ever is the a new immune system/viral load test being done. I just got my results back, and they were horrible. I thus have the belief that antivirals are necessary if I am to regain my health (although whether the antivirals that will work are currently available is another story). Fixing my immune system seems a less likely option, considering that the genetic testing that I had done a couple of years ago revealed that it was all messed up. Kind of hard to fix genetic problems, most of the time.

    Anyway, if you want to learn about the immune system test, you can check my recent posts. It's pretty obviously titled and just a week or so back.

    I'm not sure about the idea of antivirals not working after a while. That may be true. If so, I tend to think the solution will be to use them like a lot of people use yeast remedies---to rotate several of them so that a wide variety of them can be killed off (rather than however many are killed off by just one). I haven't gotten that far yet, though. I'll see if I can find any antiviral that works, and then perhaps experiment with others.

    I'm not on this board a lot these days, but I will stop by once in a while and write progress reports as I progress.....
  6. cherylsue

    cherylsue Member

    I assume it was Dr. Guyer who did the viral panel. Dr. Papernik says he does not test for viruses.
    Maybe I can get my local doc to run the test.

    Thanks for your input.

    CherylSue
    [This Message was Edited on 10/12/2006]
  7. Slayadragon

    Slayadragon New Member

    No, it's not a viral panel. It's a test that measures a) the efficacy of the immune system and b) the total viral load that the body is carrying. Specific viruses are not mentioned.

    This seems to me important in a way that I didn't think about before the test. All those other tests say, "Yes, you have CMV" or whatever. But that doesn't seem the point.

    The point seems to me to be the number of viruses in total that have overrun your body. It seems clear that, for instance, a little HHV6 isn't terrible. Lots of people have that. And so on for the other viruses. They're not the cause.

    Based on this approach, it seems that the real issue is that the immune system is in such bad shape that it is unable to keep any viruses at bay. This includes things like cmv and hhv6, sure. Everybody has some of this. But also "mystery" viruses.....there are a ton of viruses out there that haven't been identified. (It took top scientists 2 years to find the AIDS virus.)

    Then there are regular cold and flu viruses. CFS patients apparently do not "get colds." I recently was struck by another person's post that it's not necessarily that we don't get the viruses that cause cold or flu. We know we don't get the reactions---fever, diahrrhea, congestion. But (and I think there's some dispute over this) those are not _caused_ by the flu, but rather are the body's defense mechanisms with regard to trying to get rid of the flu. Generally speaking, most Americans try to get rid of these symptoms. The Danish, on the other hand, believe that these symptoms are useful in helping to get rid of the flu---e.g. germs are eliminated through diarrhea and congestion, the fever burns some off. So if we don't get those reactions, it may be because our bodies have given up. With that kind of viral load, the body is going to feel tired anyway, and so one more visitor doesn't necessarily seem like an especially eventful occurrance. I haven't thought about that a lot, but it's certainly a possibility. Most CFS patients seem to believe they feel like they have the flu all the time, except without any of its overt symptoms. I tend to think that is true.

    That last hypothesis is not one I've read about elsewhere or discussed with anyone or thought about. It is a novel thought and thus kind of fascinating to me..

    Anyway, the panel shows a range of normal values on four measures. The first three gauge how well the immune system works. The fourth is total viral load of any kind.

    I'm going to mail my results to Papernik (he asked for them when he drew the blood), and so if you ask about the Immunosciences CFS test, he should know about it. (Look at my post on this to find out what the test names are.) I will let him know about my response to anti-virals as well. He certainly does not seem to be closed to new ideas.....he's just not an innovator. Early adopter, but only of technology and treatments that seem to have been helpful to some people.

    I will keep you informed.....
  8. Slayadragon

    Slayadragon New Member

    I wrote a new post caled "Dr. Teitelbaum Treatment Approach." It lists all the treatments that I am currently using (or intend to use in the future if necessary), with explanation of what they are for.
  9. cherylsue

    cherylsue Member

    Was it Dr. Papernik's office that drew the blood and sent it to Immunosciences CFS lab?

    I did see your post with the test results. How are you building up the NK level? I tried taking the Maitake D faction but it makes me feel ill. ImmPower makes me feel very tired. Do you know of ways to build this NK killer cell level up?

    Also, what is your dosage of St. John's wort and L- Theanine? I've order some Pure Encapsulations online. I am getting more depressed by the day, and I can't seem to tolerate most RX's.

    Thank you, as ever, for your valuable input.

    CherylSue
  10. Slayadragon

    Slayadragon New Member

    SJW: 600 mg capsules, 2-4 per day sounds right. I've experimented with different amounts. I'd expect it to have an effect in a week or less... It may make you more photosensitive, and so don't be totally surprised if you need sunglasses more. You could burn more easily too. I've not noticed these effects, but one other person pointed them out (without knowing of them in advance).

    L-Theanine: 200 mg capsules, 2-4 per day (depending on how wound-up I feel). This should start working almost immeediately, within a day (maybe two). If you don't get an effect on the lower amount, maybe try increasing and see how you feel.

    Dr. Papernik did not order the test, but one day I came to an appointment and brought the box with me to ask if he knew where I could get the blood drawn. He then just drew it himself, and I sent in the box.

    I tried the MGM stuff for a couple of months. I think the recommended amount was something like 3 capsules a day, 3x a day? In any case, quite expensive. It definitely felt a herx, even a fever. But after this went on for a couple of months, I gave up. Maybe that meant it was killing off viruses and I should have stayed with it. Hmm. Maybe this would be a good thing to try in combination with the antivirals. If the viral load were to go down, maybe the NK cell activation would be helpful. As it was, my guess is that there were too many viruses and that the NK cells didn't have a chance to really make progress no matter how hard they worked. What do you think? This is a really good thing to think about, actually.
  11. cherylsue

    cherylsue Member

    Interesting. Do you up the NK killer cells, or do you fight the viruses? You may kill some of the viruses, but your body has to fight them off. (I don't believe in Transer factors for most people.)

    Have you read any of Dr. Cheney's theories and the RNase factors? There's an article in the library here on the 3 phases of CFS.

    Proboost is supposed to help the RNase activity. Check out the studies on ProBoost. I plan to be on it for 6 months. It has helped some others on this board, too. Dr. Verchota in Minnesota uses it, as well as Dr. T. and the FFC's.

    Ampligen is supposed to work on the RNAse, too. That's where it is effective.

    Have you been tested for mercury poisoning? I'm wondering if that doesn't contribute.

    If they spent as much money on CFS research as they do on AIDS, we'd have an answer by now.

    At least you have the answer in your panel. You know exactly what is wrong. Good luck in your research, and please share.

    CherylSue
  12. Slayadragon

    Slayadragon New Member

    Why do you think Transfer Factor isn't right for most people? I keep hearing about it, but my own experience was that it did absolutely nothing.

    I can't remember how it's supposed to work; I used to know, but that was five years ago and my mind is fuzzy right now. I will have to look it up.

    Slept about 11 hours last night. I've been feeling extremely depressed this week (more so than years), which has been worrisome since I have nothing to be depressed about. But now my husband and another close friend started feeling depressed, and so I'm wondering if it's something like a "depression flu." I bet there is such a thing, too. Anyway, hope I get overi it.

    I think the MGM does do something to the immune system (and the literature seemed sure it was NK cells). But if my usual activation is only 1/4 what it's supposed to be, and the other immune levels are off too, it may not be enough to do much. It keeps killing viruses, but not all the viruses at once. And so the herx goes on forever. That certainly was my experience. I wonder if it _ever_ would kill off enough viruses for the die-off reaction to stop.

    The more I think about it, the more I like the idea of doing a strike with the anti-virals and then following it with MGM. This is similar to what I do with depression---using one mood drug along with a couple of natural anti-depressants (st. john's wort, DLPA and l-theanine). That seems to work well enough that I don't even think I'm bopolar any more (unless I stop the drug for a day or two. So It kind of makes sense this strategy could work with antivirals too.

    Of course, the MGM-3 is expensive, but if it really contributed in a major way it would be worth it.

    By the time I go back to the Indpls. doctor, it might be time to try that sort of supplementation. I'll ask him. I did the MGM-3 stuff on my own (and he wasn't surprised at my experience when I informed him), but this may be a different situation altogether.

    I thought ProBoost was related to Rnase, although (admittedly) I'm not totally clear on what the different components of the immune system are. There must be a decent primer on that somewhere. Now I'm thinking that ProBoost might be useful as an adjunct to an antiviral too.

    ProBoost does seem to work, although far less dramatically for me than for my non-CFS friends when they're in the early stages of fighting off a cold or flu. That would make sense too. Usually their viral load is (assumedly) low, and so getting rid of a cold would have a noticeable effect.

    On the other hand, for me, if my throat starts to get scratchy, the ProBoost does stop it. But even if I don't take it, I don't really "get sick" the way they do anyway. I may feel slightly more tired than usual (like this past week), but that's all.

    I never could understand this before. Then someone on the board floated the theory that if your body is overrun with viruses already, it isn't going to bother to go to a lot of trouble to get rid of that one more. And then someone else noted that some at least anecdotal (medical) experience had noted that as CFS patients start to get better, they tend to "get" more colds.

    I kind of do subscribe to the theory that the symptoms of colds are to dump out some of the viruses (through diarrhea and mucus) and to burn some of them off (with fever.) I've never seen studies on this, though.

    The Danish do not believe in trying to stop those symptoms.....anti-congestion and cough preparations are not even available over the counter there. In America there's a perceived need to get rid of the symptoms since they interfere with working (you can hardly go to the office if your nose is really running).

    That may indeed contribute to the length or severity of colds. But for most people, the immune system can fight them off themselves with the immune system, and so the dumping factor (which also takes energy to create) isn't crucial. It's possible all those drugs make colds last longer, but in the end they are beaten.

    I don't know if this is true. But if it _is_ true, it would explain what happens with me. My body just says, oh, what the hell, what's a few more viruses. Why bother to expel them? And then I feel a little worse than usual.

    Anyway, the ProBoost is slightly useful for me.....I think maybe especially if I'm fighting off something important (like a severe flu that my husband has). It's not been a huge hit though.

    Teitelbaum says you need to take three packs a month for three months to get rid of deep-seated viruses. I don't know if that would work either. Again, now that I think about it, you'd have to increase the Rnase a lot for it to make a dent in all those viruses (well, all my viruses). And the NK count would still be low.

    Well, maybe ProBoost another thing to think about in combination with anti-virals and the MGM-3. That would be even more expensive (another $4 dollars a day). But conceivably worth it.

    How much ProBoost per day are you planning to take?

    I don't know anything about Ampligen. I will try to look it up. I didn't realize how bad my own problem was until recently. And it always has seemed to me that natural antivirals were probably on the wimpy side. They hardly would work for AIDS, for example.

    So I didn't investigate thoroughly before, and during the past 10 days I've been too busy and then tired. I will soon.

    Mercury poisoning was one of the first things I did. Removed all my fillings by this special dentist, with the dental dam and the the that covers your nose so you don't breathe it in.

    Got a--chelation test, is that what it's called, where you take some kind of substance (can't remember what) that loosens the mercury from your body. Then you save your urine and they analyze it. That was only slightly elevated, I think--I might have done that oral chelation treatment one more time for good measure, though, can't remember.

    Also had a hair sample done to test for other heavy metals. None was a particular problem, I don't think. I have all those tests, could look them up. That was about 9 years ago. I was extremely sick then.

    That immune system panel I just got back is not very expensive to do, I found out. Only about $350, supposedly insurance coverage is pretty easy to get. If I give the panel to Papernik and then report some success with an anti-viral drug, my guess is that he would let you try it too. He's not unreasonable, certainly not against prescription drugs, and not against the idea of using drugs (like Strattera) for purposes other than their approved FdA approval.

    He's just not a pioneer. Hopefully I'll be able to give him a solid report by sometime in January. (If one of the antivirals does indeed work.....if not, I will have to try others, I think.) Your sick-well-sick-well pattern (from your profile) is not exactly like mine (sick all the time, somewhat better most of the time if I cling to my variety of band-aid treatments), but it does sound viral to me.

    if so, the viruses should (now that you're actively sick show up on the test. So perhaps if you wait a bit, getting him to proceed with it won't be difficult at all.

    Good luck to you too....
    [This Message was Edited on 10/14/2006]
  13. cherylsue

    cherylsue Member

    You certainly give me food for thought. What is MGM-3? Is that the mushroom supplement like ImmPower or Maitake D-Faction? Where do you buy it? I thought it may not be available anymore.

    I like your plan of trying the antivirals and then building up your NK levels. This is what the FFC's do. They also give some supplement for the fibrin -leuko...(sp?).

    The Immune test is not very expensive. Did you order the kit online? I may even talk my local pcp into doing it. She's pretty cooperative. Dr. Papernik is a bit of trouble to get to because he is a distance. I'm hoping when Ampligen is released in pill form, he will let me have a crack at it, though.

    It certainly sounds like your "depression" is the "fighting a bug" kind. Cold viruses have been going around my house, and I've been sleeping a lot more and feeling the malaise more keenly. My ProBoost, Sambucol, and the FFC's herbal antiviral have been my friends.

    It's funny how you don't get the full blown cold or flu. I certainly do get them with my bouts, and this just puts me into a deeper relapse - sort of rolls me back to the beginning. Last year, I found that taking my army of supplements prevented me from getting sick during the school year as I am exposed to sick students and staff. It worked.

    My relapse this summer has a different feel to it. CFS does not exactly feel like anything else. I know when it is about to strike, and it comes on quickly with a fever.

    Do you have to wait until January for the antivirals? Why not send Dr. Guyer your test results and perhaps he can start you on them sooner? Or, maybe Dr. Papernik can start you on Valtrex. I believe DeliaRose said he prescribed that for her.

    Maybe work on getting the NK levels up. Do you know chocolate and sweets can lower them? This may not apply to you though because you seem to be careful in this area. Chocolate can precipitate a relapse in me, and this may be indicative a Herpes infection such as Epstein Barr, CMV, or HHV6.

    Regarding transfer factors, there's too much herxing and misery involved. This disease is miserable enough. I read that it takes 2 years for them to be effective. There has to be an easier way.

    I am desperate to get well, and ruminate about what I've researched and experienced. I sense that you are as diligent and intelligent in your approach to this disease as well, and I appreciate your input. I am a skeptic of quick fixes, and I go by the motto "do no harm." If, and when, I get to the end of this relapse, I don't want to have taken anything that has messed my system permanently. This disease has done enough of that.

    BTW, have you heard of Naltexone LDN? My college doctor friend in California recommended this, but I've seen mixed reviews. She has a colleague who made a complete recovery, but her colleague had more physical pain. I don't have pain as one of my symptoms. Maybe, this is something you'd like to investigate, as well.

    I had my one amalgram removed 5 years ago, and my second amalgram in my wisdom tooth pulled two years ago. Can't say it helped either way. However, living in the Chicagoland area with coal firing electric plants and garbage landfills is probably not the healthiest environment. I like to eat a lot of fish, too, but have cut down on tuna, shrimp, etc. We really can't avoid mercury.

    Hope you can get on the antivirals soon. It sounds like a plan.

    CherylSue
    [This Message was Edited on 10/14/2006]
    [This Message was Edited on 10/14/2006]
  14. Slayadragon

    Slayadragon New Member

    First, I got the name wrong. It's MGN-3.

    I just did a quick glance on the Internet. This is what I found.

    MGN-3 is a derivative of mushrooms and rice bran. It seems to have been removed from the market by the FdA a short time ago, apparently because its manufacturer was making claims that it was useful for cancer. I didn't see anything that said it was dangerous.

    If I thought about it hard enough, I would have told you that the brand that I took was called ImmPower, and that it contained MGN-3, and that (I now recall) was supposed to be extremely popular in Japan (where this disease is, of course, called something like "Natural Killer Cell Dysfunction Disorder)." Whatever it was, I feel almost certain I ordered it off of the store associated with this board. (xxx.immunesupport.xxx)

    I looked at the ingredients of ImmPower (which has a somewhat different label than I remember), and it contains an ingredient with a different name but that sounds like the MGN-3 (e.g. made of mushrooms extract, same characteristics of increasing NK cells etc. , popular in Japan). One Web site said that the stuff that's in it is "even more powerful than MGN-3."

    So I'd assume that this stuff works in the same way as the MGN-3 and at about the same level of effectiveness. Maybe they changed the formulation slightly and stopped promoting it in the same way to get around the FdA ban, and some of the brands that used to use the MGN-3 switched to the new stuff. All just guesswork on my part. I feel pretty safe in assuming it's basically the same.

    I don't know what an FFC is.

    I also don't know what a fibrin-leuko is. Maybe I used to know these things and am just not remembering the names at this moment.

    I haven't looked up the Ampligen yet.

    I guess I will take some ProBoost and see what it does. Do you find Sambucol helpful? What kind of herbs are in your antiviral mixture?

    Your immune system sounds like it might be semi-functional......like it does okay unless it's too stressed, after which it has a blow out. Hmmm. Mine seems not to be functional at all. Not sure what the difference is. I suspect it's just genes. I had genetic testing of several immune genes once, and my Indpls. doctor said that the results were very bad. Maybe yours are slightly better.

    No, I'm going to start Famvir as soon as I can get it.....which is to say as soon as i get the prescription in the mail from the doctor (the Indpls. doctor's office is kind of slow) and then send it in to my mail-order prescription company. He said to give that a month and then, if it's not working, switch to Valcyte (which is more powerful but also has a few more side effects.....it's the one the Stanford doctor used to lift CFS patients from the dead). By the beginning of January I should have been on these drugs long enough that I can give Papernik (and my Indpls. doctor) a good idea of whether they've done something. They're both expensive, but the Indpls. doctor says people get good coverage. I hope so.

    I had no idea about the chocolate and sugar affecting NK levels. That's another reason to avoid them scrupulously,, in addition to the yeast. Extra motivation is always a good thing. Thank you.

    I didn't get _any_ effect with transfer factor. In any case, based on that test, I think those natural drugs are no match for my viral load.

    I'm a bit past the point of "do no harm," I think. If there's a reasonably high chance something will help and a very small chance it might harm me, I'm willing to try. There is almost nothing on the market that has the potential of causing permanent harm, anyway. Maybe the fact that you are well some of the time (with relapses) whereas I am never really well accounts for the difference in attitudes.

    I don't know Naltexone LdN either. Thank you for giving me these possibilities to look up.

    I will keep you informed--please do the same for me....
    [This Message was Edited on 11/26/2006]
  15. Slayadragon

    Slayadragon New Member

    I looked up some stuff on Ampligen, which I hadn't thought about for a long time. Do you think it has potential? Have you heard any positive stories?
  16. cherylsue

    cherylsue Member

    Regarding the mushrooms, that's pretty much what I thought. Thanks for clarifying that. What does Dr. Guyer say about boosting the NK levels? What does he suggest?

    Regarding Ampligen, Drs. Lapp, Bateman, and Petersen are running a phase 3 trial. These doctors have been involved with CFS patients over the past 20 years. Dr. Papernik said there were remarkable recoveries with these patients - 100% even for the worst. It doesn't help everyone, but the statistics are pretty good. Very expensive. Right now it is only available in IV. But Dr. P told me that he heard a rumor it might be available in pill form someday. It's awaiting FDA approval. It may take 3-5 years, though.

    If you check under Dr. Lapp's Huntington Clinic in Charlotte, NC, he gives these IV's. However, it costs about $1200 out of pocket per month. I think the minimum 6 months, and you'd have to live nearby because I think the IV's are given often.

    Ampligen works on the RNase situation. Dr. Papernik would be the one to ask about this.

    How desperate are you? Maybe try the antivirals first, and see how you do. That certainly looks promising.

    I just take some herbal anitviral (very expensive) from the Fibro and Fatigue Center online site. There's plenty on the FFC's on this message board. Dr. Teitelbaum is now medical director of these centers. You are doing his protocol anyway, so it would be a waste of time for you. The Immunoscience Lab test is your ticket to treatment. You now have PROOF.

    There's certainly some promise for you, and I think you are on the right path.

    Then there's gene therapy and stem cells someday...

    Wishing you the best,

    CherylSue

  17. cherylsue

    cherylsue Member

    I agree totally with your comments on developing more antiviral RX's, and I certainly feel the malaise I always feel is viral related.


    Try visiting the website of the Fibro and Fatigue Centers. Go to their online store. In the leftside menu select "anti-infectives." I purchases the Ultraceutical Anitviral. Click to see the ingredients. Also, click to see what it is supposed to do. It's pricy stuff, but the ingredients have been mentioned on the CoCure site to help with CFS.

    Does it work? I don't know. But given the few choices I have, I want to give it my best shot. The only supplements that I felt ever helped me were ProBoost, Sambucol, and D-Mannose (UTI's).

    My Pure Encapsulations St. John's Wort arrived the other day. It has been helping me with sleep. I wanted to thank you for that suggestion.

    CherylSue
  18. Forebearance

    Forebearance Member

    I just wanted to post something to this thread so I can find it later. I tend to forget things I've read!

    Hey, Cherylsue, I can't take transfer factor either. It wipes me out completely.

    I have to stick to natural things, too.

    Forebearance
  19. cherylsue

    cherylsue Member

    I agree. Natural is better for me. If I remember, you have recovered subtantially. How do you rate yourself on the CFIDS scale?

    Thanks,
    CherylSue
  20. deliarose

    deliarose New Member

    reactions/opinions to transfer factor.

    I know Mikie says she has the herx from hell, but I've been on one for 2 months now.. and while I experienced an increase in fatigue at first, now I feel almost terrific.

    Or at least terrific compared to a couple months ago.

    I wonder if the brand makes a difference?

    Maybe some brands are weaker or differently calibrated than others? Or maybe it depends on your viral load?

    I take Immunity Today's brand which is $135 a bottle (i think.. it's expensive anyhow).

    Worth every penny. Although if I wasn't worried about having children....I could probably use Valcyte and get this thign over with much faster.

    Or at least, that's the impression my doc gave me. Joe Brewer.

    He didn't say how long I would have to be on the TF.. but I've heard 2 years from others...

    At this rate, I feel I could be ready to join the workforce again in 6 months to a year.(I hope ! touch on wood.)

    delia