I may sound paranoid but

Discussion in 'Fibromyalgia Main Forum' started by Lasso, Jul 31, 2003.

  1. Lasso

    Lasso New Member

    For a very long time now I have believed that somebody HAS come up with, if not a cure, a successful treatment for CFS. When I first got the internet ...mmmmm...about...5 years ago, I looked CFS up right away. I found several statements from people telling about treatments that really gave them back their lives. All I remember about the treatment is that it was EXPENSIVE ...like I believe $5.000 for a six month supply.
    I didn't know at the time how to *save* anything from the internet or bookmark it so I eventually lost the page.
    I recall calling doctors and asking them about it. None that I spoke to had ever heard of the stuff ( I no longer recall the name).
    I tried looking it up again not to long ago, but couldn't find any info on this stuff that supposedly helped several CFS patients get on their feet.
    I had found several web pages with people talking about *miracle cures* for CFS that they had used. I tried to find info on the product in question, no luck, and suddenly the name of the treatment was taken from the internet.
    I've suspected for a long time that somebody has found something to help CSF, but they are keeping it for the RICH!
    As I said I know it sounds paranoid and all, but I do feel that there are successful treatments - if not cures out there. But if *who ever* was to let it be know that THEY have a cure/treatment for CFS, they'd be forced to sell it at a price that the *less than rich* can afford.

    Note: I heard a few years ago that there was a very possible cure for cancer found, BUT it couldn't be released to the public until it was tested further. If a person only has a few weeks left to live, they don't exactly have anything to lose by trying the *cure*. Again, I just feel that some greedy fat cats are keeping the stuff quiet and selling it *under the table* at a high price to those who can afford it.
    .....Now, feel free to tell me how PARANOID I am! ;)
  2. klutzo

    klutzo New Member

    You asked for it, so I have to say that this does sound pretty paranoid, and I hope you are just kidding about what you said. If not, I would seek a therapist, since being in a constant state of mistrust and fear like that will cause your muscles to tense up like crazy, not helpful to those of us with FMS/CFS.
    For one thing, doctors hate us and would love to get rid of us, so they would jump right on to a cure for this, so they could go back to treating broken bones, colds and other easy, uncomplicated stuff.
    I have read just about everything that has come along in the past 17 yrs., and the only treatment I can think of that I know for sure has put several folks on their feet may be injections of human growth hormone (hGH). It is very expensive, but you can get it, if you can convince a doctor or go to one of the clinics or get into the study currently being done by the Eli Lily Pharmaceutical company. There are some clinics (at least there are here in Florida) who will send one of their doctors right to your house to examine you and run the proper blood tests, and will then send you the injection kits through the mail. Insurance does not pay for this, but if you can get into the Lily study, it's really cheap. You can probably get insurance to pay for an IGF-1 blood test to see if your hGH level is too low (most of us do have low levels), but if you want to get into the Lily study, you need to have an hgh Stim test, which costs about $800 and is not convered by insurance. The reason ins. will not cover it, is that it is a pallative treatment , meaning it must be continued forever to maintain the results, and most ins. will not cover any pallative treatments, or will only pay for 12 treatments per year, so yes, the rich are the only ones who can get these benefits, but that is nothing new, and not confined to our illness. The American medical system, more than any other in the developed world, gives different care to different economic classes.
    If it was not hGH you heard about, it may have been one of the many Internet scams out there. There are so many of them!
    IMO, I do think it is possible to recover from FMS/CFS, but it takes tons of hard work, self-discipline,a good holistic doctor, and years of fine tuning the treatments, and (hardest of all) a willingness to leave the current American lifestyle and diet behind, permanently.

    [This Message was Edited on 07/31/2003]
  3. Mikie

    Mikie Moderator

    I will send you the cure.

    OK, now please forgive me. I couldn't help myself. Sweetie, there are all kinds of scams for every illness out there. There are also urban legends of all kinds. If it sounds too good to be true, it probably is.

    I do believe that the mycoplasmas which triggered my CFIDS was from contaminated vaccines given to Gulf War Vets prior to leaving for the Gulf. I also believe the contamination stemmed from germ warfare projects being done by our own Dept. of Defense. Dr. Nicolson says the mycoplasmas causing our illnesses are not found in nature and have to have been biologically engineered. I have seen a copy of the patent on one of these mycoplasmas held by a doc with close ties to the Dept. of Defense. Am I paranoid? Maybe. Maybe not.

    Is it because our own govt. is trying to cover up its involvement in our illnesses that there is so little govt. recognition of our illnesses and funds being spent on cures? Again, I don't know, but after doing a lot of research on this a couple of years ago, I have come to the conclusion that there is a whitewash of this. Dr. Nicolson believes this as well. There is too much evidence to back up this conspiracy theory.

    I just read an article about the obstacles which have prevented the cures we all though would be coming for cancer. They are real and are due to the complexity of our bodies. I do not believe there is a cure being withheld.

    Love, Mikie
  4. Lasso

    Lasso New Member

    *sigh* ..I said I would sound paranoid - but it does seem that there are so many *possible* treatments that hit the news then seem to vanish.
    I know about the scams too - like "buy my book, it tells you how to get well from CFS".
    I probably get more ticked off than others over this. Where I am, there don't seem to be any doctors to really help me.
    My specialist diagnosed me about 8 years ago with CFS. He prescribed B-12 shots with something else I can't pronounce for several weeks. It didn't help - and besides muscle relaxants, I haven't received any more medical help for CFS. My specialist has not found anything new to try in these 8 years. In all the time I have been looking, I found 1 other CFS specialist who was way to expensive.
    I have asked my regular doctor if she knew of any specialist that would take me - no.
    I finally gave in to just using herbs that help. I know that are other treatments out there, but so far, for myself, no affordable ones.
    I finally gave in to just using herbs that help. I know that are other treatments out there, but so far, for myself, no affordable ones.
    I live in Mid. Missouri, if anybody else is from around this area and knows of specialist for CFS - I would be grateful for the doctors name and Phone No.
  5. elaine_p

    elaine_p New Member

    but to me it seems that using antibiotic and antiviral protocol is new. If your doc isn't a specialist, it's not surprising that he isn't aware of it. My doc isn't a specialist either, and I have no idea where he heard of using antivirals (except I did give him some info on stealth viruses and something about Dr. Lerner's theory). It will be interesting to see what he thinks about using antibiotics as well.

    Plus, I think Dr. Cheney's use of Klonopin is newish.
  6. selma

    selma New Member

    I want to know what herbs you use?
  7. Lasso

    Lasso New Member

    I have tried many herbs over the several years. I try to take care that they are safe and go together. Right now I am using Ginseng and - don't bite my head off for this - Guarana. They are the ONLY thing I have found that help me.
    I had not taken herbs at all or anything with caffeine in it for about 2 years at one point and was bed ridden for it. I tried health diets, vitamin and mineral supplements - that did help a bit, but still I was bed ridden.
    I take the Ginseng and Guarana is *small* doses. Infact, I get Guarana tablets for I can break them up and take a *very* small amount at a time. The directions say I can take about 4- 6 tablets a day, I take 1 - 2 tablets a day and I break them in half and take the first 2 halves about 30 minutes to an hour apart, wait about 2 hours and do the same with the other 2 halves so that it gets into my system steadily.
  8. Mikie

    Mikie Moderator

    With your location in the title and ask for docs in the area. Our members are really good about recommending good docs.

    I didn't have a specialist for ages and didn't know there was a good one here whom I now see. I just did all my own research, including the Klonopin, Guai and antibiotics treatments, and present printouts of papers to him with the important info highlighted and annotated. He has been wonderful about working with me on these treatments. When I finally did find a specialist, he told me my treatment plan is perfect and that he would not have done anything differently than what my PCP and I had done if I had been seeing him all along.

    If we can find just one doc willing to work with us, we are not helpless. It means really getting involved in our own treatment and taking a lot of responsibility for our own healing, but I believe that's the way it should be. The people who have gotten better are the ones who do this.

    Good luck to you.

    Love, Mikie
  9. beckster

    beckster New Member

    summary of Dr. Lerner's theory and treatment? I haven't heard of him. Also which antivirals (the names) are you talking about. I am trying to find a doc who is willing to use an antiviral treatment. Thanks--Beckster
  10. beckster

    beckster New Member

    I also agree with Klutzo in that of the developed countries
    we have the most disparity of treatment by class. Its a fact (and getting worse as the middle class disappears).
    I also agree with Mikie that the government developed a microbe which is, in part, making us sick, and is probably slowing up research into this area. But I have wondered myself if there isn't something which (if not cures then) really successfully treats EI/CFIDS/FMS etc. that only the elite have access to. So many of us are ill--why hasn't it hit some of the elite--especially those connected with the military and defense (given what we know about the illness inducing microbes like mycoplasma, and also about illness inducing vaccines, a whole other story).(The vaccine story in a sentence: many career pilots refused to be vaccinated and gave up their careers and pensions because they saw so many of their fellow pilots and their families become sick after vaccination--I saw this on C-SPAN of all places!) Why doesn't someone in the Bush family have it, or Rumsfeld family, or Pentagon families, etc etc???? Do you honestly think they would be sick for decades and decades with no or trvially effective treatments? Hmmmm. I wonder

    THE GOOD NEWS: There are several good lyme/cfids/fms doctors in middle Missouri. I don't know where you live.
    But one is Dr. Carol Ann Ryser in Kansas City, phone #
    816-763-9165. Another doctor in Springfield is Dr. Charles
    Cristo and his number is417-886-8995. They both should have some of the cutting edge treatments (lymeliterate,
    anticoagulation therapy, antibiotic therapy, cortisol, etc).
    This is the best we peons get!!! If you start treatment please post and let us know how it goes. --Beckster
  11. beckster

    beckster New Member

  12. klutzo

    klutzo New Member

    A partial list: Cher, Stevie Nicks, Blake Edwards, Leann Rimes, Cathy Crosby.
    I don't know about big-wigs in the military, but the entertainment business has not been immune. I read in Osler's Web that in the early to mid 1980's one out of every 3 Hollywood Producers had come down with CFS.
  13. cureforpain

    cureforpain New Member

    I'm paranoid too. But my paranoia is about the link between health and the environment. Try reading scary books like "Fateful Harvest" by Duff Wilson, and apply the knowledge that a lot of the food we are eating is grown with fertilizer made from "recycled" toxic wastes. "Our Stolen Future" is another scary one about how many chemicals mimic estrogen and other hormones, and how little we know about the long term consequences of constant exposure to them. We do know that some of these synethic estrogen mimics get stored in body fat for life, accumulate over time and disrupt the reproductive cycle.

    I have no way of knowing if my CFS is hormone-related, or caused by ingesting heavy metals and other toxic chemicals. But I'm sure it doesn't help me!

    I get so annoyed when I look at the kinds of research studies that are being done, particularly about how so many grants are given to study "coping skills," SSRIs and "graded exercise." Why don't they check the levels of heavy metals and various chemical pollutants in our systems? If they don't know how, that would be a good place to start. Sheesh.

  14. mrcpvls

    mrcpvls New Member

    How could someone like me with FMS have gotten any of these engineered mycoplasmas when I haven't had any shots for around 25 years. I also live in Canada. I appreciate your candidness on the subject.
  15. pam_d

    pam_d New Member

    .....represents a line of products. I actually had an appointment with her at one time, when I first moved here, then cancelled it because of this. Call ME paranoid, but I am a little bit suspicious of a doctor who exclusively touts a specific company's products----to the point where that doctor's picture is on the company site. Other people may not have an issue with this; that's fine, everyone is entitled to his or her own opinion on this subject. One thing I loved about my allergist was that he suggested TYPES of supplements, not specific product names.

    Beckster, who mentioned Dr. Ryser, I'm not saying no one should use her; if you've gotten satisfaction & better health from using Dr. Ryser, more power to you & I'm happy for you!! I'm just saying, I'm too much of a skeptic, I imagine, to be happy with a doctor who represents any one line of products. Who knows, maybe I'm the one missing out!

    Hugs & better health to all,
  16. pam_d

    pam_d New Member

    ...about Dr. Carol Ryser....just investigated her new & improved website. Doesn't specifically name a product line as her old website did, just types of supplements. My apologies, Dr. Ryser.....perhaps I wasn't the only one who had a problem with this....
  17. elaine_p

    elaine_p New Member

    I posted a separate message with the info on Dr. Lerner.
  18. beckster

    beckster New Member

    that kind of thing either. I haven't seen her personally; was going to but then found someone much closer to me.
    I got her name from calling Hemex Labs; they will recommend docs who are trained in treating the coagulation/microbe problems, and there are not that many in a given area who are trained in this. I believe she is also very lyme literate; another hard thing to find. I didn't like her earlier websites much either. But, I am very pragmatic; I read up on the newer treatments and find someone doing it.
    You might notlike the first doc you try; or, s/he may only get you half way to where you want to go. Then you go on to the next; maybe they have an additional treatment or two. Sure wish it wasn't like this--wish there was one doc who could treat all of my problems--but at least for me it hasn't been ideal like this, just a pragmatic process of trial and error.
    [This Message was Edited on 08/02/2003]
  19. elaine_p

    elaine_p New Member

    I'd assume if you have been infected with an engineered mycoplasma it was from having contact with someone.

    I haven't been tested for mycoplasmas yet, but always figured I got sick after getting pneumonia during jury duty. And after seeing the recent post on chlamydia pneumoniae (sp?) I'm even more convinced. Of course, 6-1/2 years after the fact it's probably impossible to know for sure.
  20. Lasso

    Lasso New Member

    Thanks for the info on the doctors. I'll check into them.
    And you folks will have to forgive me if I suddenly don't post for long periods of time. One of the LOVELY effects CFS has on me is not being able to focus on anything at times. I may sit down in front of my computer, be on the internet for all of 5 minutes and become edgy and unfocused - often do to brain fog, I guess. So please don't think it's because I'm not interested in the forum. I has looked for a forum on CFS for a LONG time, gave up hope of finding one, then found this one by accident. :)