We need a breaktrough...

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

  1. DADI

    DADI New Member


    I'm suffering already 10 years with this condition...i'm fed up,i need something (other than CBT) to be proposed....

  2. richvank

    richvank New Member

    Hi, DADI.

    I'm sorry to hear about your longstanding illness.

    I would say that the new understanding about the partial methylation cycle block coupled to glutathione depletion in CFS (based originally on autism research) is sort of a breakthrough. If you have CFS, I suggest that you have the methylation panel from Vitamin Diagnostics run (requires an order from a doctor or chiropracter and costs $300, Phone (732) 583-7773; Fax: +1 (732) 583-7774). This panel will tell you if you have a partial methylation cycle block and/or glutathione depletion. If you have a partial methylation cycle block, which most PWCs seem to have, I suggest that you consider, together with your doctor, the Simplified Treatment Approach for lifting the methylation cycle block in CFS. You can read about it in a post I made to this board on July 18, 2007. This treatment is currently helping over two-thirds of the PWCs who are trying it. If you search on the word "methylation," you can find reports from people on this board who have tried it or are still on it, going back to February, 2007.

    I hope this helps.

  3. Leaknits

    Leaknits New Member


    You're right. We DO need a breakthrough.

    FDA has recently approved the practice of drs going off-label and in some cases totally off-symptom in prescribing Lyrica & Zyprexa for treatment of ME/CFS/Fibro.

    Then FDA stepped up and told truth re Zyprexa which is a psych drug and which creates horrible effects in many too many patients. Please consider checking out www.YouTube.com and running search there re Zyprexa. And/or: go to a trusted medical site such as WebMD.com or Medicinenet.com and read what the original Big Pharma-INTENDED uses of Zyprexa were.
    Unless they have been removed from the internet you will find a couple videos at YouTube telling Truth about this med that is a horror-drug for too many people.

    Ditto Lyrica. Please also check out the medical sites and read the original intended uses of Lyrica. One effect drs seem to mainly think is small is unreasonable weight gain. Drs lie and tell patients "Oh you are just eating more and you don't remember."
    This is a jaw-breaking slap to the faces of people with ME/CFS/Fibro who have memory issues.

    I hereby apologize to those people who have so far been able to use these substances with no adverse effects. I do believe that falls under the ME/CFS/Fibro Rule One: Everybody's Different.

    Truth: Lyrica alters a person's metabolic makeup. Metabolically-healthy people, also people who have hypoglycemia (low blood sugar) can "flip" and become diabetic.

    I don't trust anything current dr wonderful orders up until I can run search about it.

    Some days back a name-forgotten person (my apologies to the name-forgotten person) suggested that we use the European Drug Search-for-info site since Euro drug search info seems to be much more comprehensive & truthful.
    I apologize but the name of the Euro site has been forgotten. All I remember is that the name is a three-consonant something dot com and I'm sorry. Had a note about the name taped to my monitor here but it's vanished.

    I'll see if I can find it in the current jumble of my past posts and, if I can locate it, I'll come back here and post the name.

    Anybody else have the name of the thing, please?

    Another person wrote on this board she doesn't accept any med that has been on the market for less than 5 years, therefore hasn't gotten all the "bugs" worked out. EXCELLENT idea.

  4. monicaz49

    monicaz49 New Member

    Amen DADI! I hope somethng wonderful is lurking around the corner for us all. :)
  5. ladybugmandy

    ladybugmandy Member

    for those of you w/out health insurance..perhaps obama will help you. i pray he will.

    i pay for everything out of pcoket too but my mother helps me. w/out her i would be out on the street or worse.
  6. mindblower

    mindblower New Member

    "All indications are that the methylation protocol(s) are headed for the scrap heap, as are all of the anti-viral protocols..."

    I wish those said to be having treatment breakthroughs with these would post online at a large ME/CFS information exchange site like this if they are actually having remarkable and sustained benefit from them. Quite damning, however, at this point and what flys in the face of not unreasonable expectation is there seems to be little if any of this type of posting here as a result of such treatments and their promise, too, seems to be fading to clearly failed based on direct anectdotal reports, as I can gather, backchannel or off line.

    Even the latest scientific report on Valcyte treatment make continued use of it in ME/CFS seem quite questionable to futile. Same goes for the endless use of antibiotics for said ME/CFS causing infectious diseases diagnosed based on non-diagnostic tests, the Western Blot test for Lyme(from any lab) being one example.

    I can hear the all too common "there must be something to it though" statement in response to these available treatments. This is based on experiences of momentary blips of improvement(that recede, the part of this scenario too often left out) and the drama of continued herxing or herx-like reactions while on a treatment with some tale of some unknown's complete recovery doing the same YET no real recovery for you nor those you know doing them, only the drama.

    This is what there seems to be to them unfortunately, not much of anything else, and more than just CBT needs to be eliminated as a serious treatment to consider for ME/CFS that's for sure.

    MB[This Message was Edited on 11/08/2008]
  7. winsomme

    winsomme New Member

    you never know when we are going to get the breakthrough we are looking for.

    here is the link to that U Nevada video for those that may have missed it.


    [This Message was Edited on 11/09/2008]
  8. aftermath

    aftermath New Member

    Nofool's post is dead on accurate.

    We need SCIENCE BASED tests and treatments. This means those created by traditional allopathic medicine.

    It makes me sick when I see posters who argue that mainstream medicine has ignored us because the cures for our illness are natural and cannot be patented.

    Candida, live blood cell analysis, etc were remnants of the day when only MDs on the fringe (I've seen them called "hippie doctors") would treat us.

    The fact is that no one has been able to show improvement in a placebo-controlled study is testament to their lack of efficacy.

    WPI is certainly a great start. Does anyone have a date on that video?
  9. winsomme

    winsomme New Member

    I believe it was from mid September...very encouraging to me.

    but i also want to say that the Glutathione angle (long proposed by Rich) was largely addressed by alt medicine practitioners and may be able to help PWCs or even be a part of a bigger treatment program and is science based for sure....

    I'm basically for anybody that wants to help figure out what exactly CFS is....I'll take all interested parties at this point.
  10. winsomme

    winsomme New Member

    Posted: Sep 17, 2008 06:28 PM
  11. bigmama2

    bigmama2 New Member

    the lack of effective cfs treatments and lack of knowledge and acceptance of cfs as a real illness- makes me sick!!!

    i think there should be soooo much more money towards research of causes and treatment. i would want to see science based (double blind controlled) studies of both traditional western medicine AND holistic/alternative treatments. whatever helps cfs patients get better, who cares if it is traditonal or alternative?

    there should be scientific studies on alternative theories such as candida, etc etc.

    by the way, so far the thing that has helped me the most is treatment for "adrenal fatigue" which is totally an alternative/holistic treatment. this should be studied more. what if this could help many of us. i have seen various reports on this board of others who have been helped by this treatment.

    remember, a person w cfs or fibro can choose to try both regular and alternative methods. i sure do. i take various medications long term, i have also tried Valtrex, low dose naltrexone. i also take various vitamins, minerals, and herbs. and i have improved substantially. i have also tried things that did not help at all.

    i am rather frustrated with the fact that most people w cfs do not join an advocacy group. there are several ones. international cfids assoc, or cfids assoc of america, or a group called PANDORA. if we dont stand up for ourselves, who will????? no one, that's who.

  12. winsomme

    winsomme New Member

    but the reason that some people go to alt med DRs is to try treatments that traditional DRs are not willing or ready to try.

    i agree that rigorous trials are needed to ultimately prove efficacy and at that point move into the mainstream, but many people want to try treatments before they have gone through that process.

    Glutathione treatments are one such example of a treatment that people really need to go to an Alt med DR or a really open-minded traditional Doc in order to investigate.

    maybe one day it will be validated by the types of rigorous trials, but that is not the current state of things.

    I'm not advocating this treatment, mind you (i find the theory very interesting). I'm just pointing out (whether it is proven to be of significant value down the road), willing people want to have access to it before that process has been completed.

    there are definitely risks of trying something that hasn't been fully studied, and we all need to be aware of that too...
  13. doxygirl

    doxygirl New Member

    Iam so tired and worn.....and just continue to deterriorate as the years pass...

    The only quality of life I have is due to my pain medication..and that gets old,

    I just want to get better.....and have the life back that I once had....i used to be so fun and energetic...now Iam sad and lifeless!

    I can barely stand myself anymore!

  14. stschn

    stschn New Member

    Bottom line is I have seen improvement on Valcyte and I have been in touch with others who have as well. In fact much more so than I. It seems odd to me that some people seem to trash talk even when they don't know what they are talking about. I would suggest that we wait until the Stanford/Montoya trial results are published. There is no question in my mind that while it will not be all the answers it will give us many of them. We know that what has held up the publication was the slow process of gathering all the information from the many experts involved with doing the analyzing of the blood which was sent all over the place. I've lived with this DD for 21 years now and while I don't have the life I would like to have I am blessed in so many ways and remembering that is what keeps me going.
  15. libbyann

    libbyann New Member

    You said it for me, I just want my life back.

    God Bless

  16. aftermath

    aftermath New Member

    I'm not a pessimist--but I am also a realist.

    Take your pick of any other illness with a KNOWN etiology (AIDS, Cancer, ALS, etc). For years, they have had research budgets literally one thousand times larger than what is spent on ME--and they are next to nowhere with regard to cures. Except for AIDS, they are next to nowhere with regard to effective treatments. Even the illnesses that are less well-defined (Autism, MS, etc) have huge budgets compared to ours--and progress has been slow.

    It is a cold, hard, unpleasant fact that that the ME research budget (both in the US and around the world) couldn't buy the toilet paper and office supplies in the labs for most other illnesses. It’s not likely to change considering the cold responses I got when I asked which persons on this board are members of the few organizations that lobby for funding on our behalf. With no money being spent, it’s really tough to draw a logical conclusion that a big break will come soon.

    With regard to pathogens, there is no firm agreement that an active pathogen causes this illness. One prominent researcher, Dr. James Baraniuk (Georgetown) believes that an abnormal stress response that creates protein misfolding in the brain is the cause.

    I really hope that I'm wrong.
  17. mindblower

    mindblower New Member


    None of us are actually being negative. Calling a spade a spade where others see hearts, in which still after decades there remains no evidence for in ME/CFS, is not being negative.

    You also likely would have achieved your admitted modest improvement, which is common in ME/CFS and not evidence of a primary infection being treated, by any of a few other measures besides valcyte treatment. Nondenatured whey, ampligen, and antibiotics too sometimes have produced similar if not the same result in PWME/CFSers, at least temporarily, as mentioned.

    These all likely knock down opportunistic infections as opposed to some extremely unlikely primary infection in ME/CFS. This is old news and something we as a community seem to too often get headfaked by, distracting from potentially more powerful research/treatment avenues.

    The writing is on the wall really and before and after lab values in such treatment cases, among the probable few that have bothered to test as such, would likely reflect the silencing of these secondary activations in the form of lowered EBV or HHV6 titers, lower RNase L upregulation, etc.. One ME/CFS specialist's in clinic study of those testing positive for mycoplasma infections showed complete flat lining on their labs, attained negative values for mycoplasma, after months of whey protein use.

    But did they get well, symptom relief achieved? Mostly no to some just modestly, the common tale, but nothing suggesting breakthrough.

    Nothing representing what we might expect as the crux of ME/CFS having been successfully addressed happened despite the labs. And stories about suggested "many" successfully recovered PWME/CFSers as a result of things like valcyte pale in comparison if we were to ever get direct reports from them here, if they do indeed exist.

    Am I being negative in pointing these things out or just spotting spades? Then further, infectious disease specialists remain uninterested in ME/CFS still, in late 2008, a HUGE red flag.

    Are they simply being negative or is there some point in their behavior worth considering?


    [This Message was Edited on 11/11/2008]
  18. stschn

    stschn New Member

    I see them as two different things. Yes we are far behind in research and the money for it is a drop in the bucket no question there. But this is the life that we have so I feel it is really important to find what is good about it and feel fortunate that we have what we have. That doesn't keep us from wanting more but I find that for me anyway it keeps me off the pitypot. There are things I can change in this life and things that I can't. I donate what I can and get involved with what my energy allows me to do. Yes I've had "modest improvements" before who with this DD hasn't? And yes I worry that they may not last but the good news is it looks like I will be able to celebrate the holidays with my family this years where as I couldn't last year. There is I believe a gift in every thing if we look for it.
  19. mindblower

    mindblower New Member

    Thanks for hearing my point and your response to my question, stschn. I appreciate your commitment to a positive outlook despite your symptoms.

    It's important to steer clear of pity potting if anyone is doing this. I have no doubt there are different degrees of severity of ME/CFS symptoms in those diagnosed with it and some posting who are most severely suffering may unintentionally come off as pity potting when they just need to be heard.

    We all want to be heard and when we do this for each other I think it provides a strong foundation for more quickly cutting past failing ideas regarding theory, research, and treatment for this condition to beyond the good, to the excellent ones.

    Authentic and unprecidented breakthroughs for ME/CFS are possible from this place.

    [This Message was Edited on 11/12/2008]
  20. Catseye

    Catseye Member

    The treatments for us ARE natural and can't be patented. Please show me somewhere where a drug company says they are actively looking for treatments that can't be patented. No company is that stupid. People don't do things for free, even health research. Some people just assume there are people sitting around figuring all this out and doing it so we can all get better. Patents make people money. Research without patents makes other people money. This is how our free market system works. Just look on websites for disease research. They all talk about patents. Even the American Cancer Society says they only give grants for patentable substances - and they want a piece of the patent. Do you think somebody made this up to sound ridiculous on purpose? It's right there on their website. Why do you think they say that? Why do you think that drugs get patents in the first place? It makes me sick that virtually nobody believes it when they can go look it up themselves, but they're just too lazy.

    I've been proving it to myself that these treatments work if you figure out what you need, which isn't impossible. You can get a simple permeability test to show you have leaky gut. And I don't know why seeing candida and parasites in your own blood under a microscope is so "primitive". You don't trust your own eyes? There they are and they shouldn't be there. But if you get the intestinal permeability test, (a scientific test, not voodoo) then you can be sure you have bugs in your blood.

    I guess all my improvement using nonstandard tests and unpatentable substances is all just coincidence and I just don't know what the heck I'm talking about. It's really very simple and it's no secret - virtually all of us have gut dysbiosis and the resulting leaky gut and you can't get well until the gut/immune system is healed. It takes a very restricted diet, a long time and a lot of supplements. And there will not be any scientific tests regarding these supplements in our lifetime because whatever drug company would do it will have no protection for the money they spend on the research. This is spelled out everywhere if people would bother to look. Research is done with profit in mind, we don't have obligatory rights to this knowledge. Why would you think we do? Because it's morally correct? Well, government doesn't use morals to govern and economies don't follow any moral codes, either. If you don't believe in gut hyperpermeability (leaky gut) then you can't possibly fix it.

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