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A disease with two faces? Re-naming ME/CFS
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I need your advice :)

Discussion in 'General Treatment' started by Buster, Apr 5, 2012.

  1. Buster

    Buster

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    edit: doh! it's advice not advise --can't edit the title :)

    Hi all, this is my first time posting here. I've had CFS/ME for almost 5 years. This forum has been a great source of information, so I want to thank Cort for what he is doing. And I want to thank all the participants here --I've been lurking here forever, and I've learned a lot.

    I do want to admit to one thing however: I am overwhelmed by the vast amount of information here at times, and by the sophistication and knowledge of the posters. I generally think of myself as relatively intelligent, but I have a lot of trouble understanding some of the information, maybe I just don't have the science background, but so many posters here are much more informed than me. It makes me feel that I've been negligent to learn, and/or in denial about my illness. Early on in my illness, I'd spend hours here, and I'd sometimes feel I was going down the rabbit hole and coming out the other end more scared than ever. This is in no way a criticism of this forum, just the reality of the illness.

    I say all this in an attempt to explain why I am coming to you all, to ask for your advice. It's because I respect your knowledge, and feel in over my head about something that has come up --I've been given an amazing opportunity by a friend who has the financial resources to help send me almost anywhere I want to try for treatment. So, I want to ask you, if you had around $50,000 - $70,000 to try to get help, would you go for it? More importantly, who would you see,? What would you try? I know that treatment for CFS/ME is a long shot, but what would you do? Not an easy question to answer I know.

    Thanks so much for reading this, and for any help you can provide.
     
  2. SickOfSickness

    SickOfSickness Senior Member

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  3. Ocean

    Ocean Senior Member

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    Sorry I don't have any suggestions but I just wanted to thank you for giving voice to the exact same thing I often feel. It's good to know I"m not alone. Although of course I'm not happy that you too feel that way, I'm just glad to know that experience isn't unique to me. I hope you get the info you need to make a good decision. How very fortunate to have a great gift like that from a friend.
     
  4. ukxmrv

    ukxmrv Senior Member

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    If I had a huge amount of money to throw at this disease (and I don't) I'd probably see one of the experienced USA doctors and try their current treatment regimes.

    My guess is that there are lots of long-term patients here who have tried a number of different things and been well enough / motivated enough / had help to read up on the science behind them. I went from never having read a medical journal to teaching myself how to read and understand research but I'm lucky to have medical and scientific people in my family.

    It takes time to do this though and many if us just don't have the brain power we used to. Thanks to all the patients who share their knowledge here. We stand on the shoulders of the doctors, researchers and expert patients who want to understand these diseases.
     
  5. taniaaust1

    taniaaust1

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    Dont be harsh on yourself, many of us have had this illness for much longer then you have so have had a lot more time to try to learn everything we can about it... and yes, many of us have some science background behind us (eg I studied nutrition and biochemistry at college).

    umm your question is a big one. For myself if I had that much money, I'd fly somewhere to see a specialist who agrees with me trialing anti virals or even that drug used in chemo which is being investigated now.

    What would be best thou for me may not be best for you.. all depends on how bad your ME/CFS is and what subgroup you are in.. and what you have previously tried and how your ME is progressing.

    Try all the cheap and easier options out there first, there are many things out there which are less dangerous and could help some which you could try first. eg methylation protocol etc
     
    Googsta likes this.
  6. Buster

    Buster

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    Thank you SickOfSickeness - i feel the same as your name suggests :)
    You mentioned ARV's/HIV drugs --would you include trying Ampligen?
     
  7. Buster

    Buster

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    Ocean, thanks for your reply. I'm glad to know I'm not alone with that feeling. I am lucky to have the opportunity to try something, CFS is likely one of the few illnesses where one asks themselves if there is really anything worth trying --given the risks ;worsening illness), and the crap-shoot nature. cheers.
     
    Ocean likes this.
  8. Buster

    Buster

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    taniaaust1, thanks for the info! I am going to try to get the help from others on this forum who can help with the science, I've always been a believer in deferring to subject matter experts anyway, and this site is probably one of the best resources in the world really :)

    do you know where I can find a good resource to figure out my ME/CFS subgroup? Does that include the illness onset type, as well current symptoms?
    Also, when you say anti-virals - does that include ARVs? Where does Ampligen fit into this group, or does it?

    Thanks again for your help :)
     
  9. Xandoff

    Xandoff Michael

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    Where to go for Treatment

    Buster, (My free Irish advice)

    If I had $50,000.00 I would go to Dr. Dereck Enlander (sp) at Mount sainai in new York, or KDM in Belgium for GcMaf. There is the Whittemore Peterson Insitute in Nevada or Dr. Nancy Klimas in Broward County Florida.

    I had my Nagalase levels tested (my ME CFS Doc in Western mass sent my blood to belgium in March) and I am waiting to hear. If I have higher levels of Nagalase I might be a good responder to GcMAF. I am very excited about GcMAF. Read up on it.

    Good Luck. Get the best help you can. If you need a bud to go to Belgium at KDM for GcMAF Tx let me know!

    Have ME CFS
    Will Travel
     
  10. madietodd

    madietodd Senior Member

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    Hi, Buster. If I were sicker, I would see Dr.Enlander or KDM. They have access to drugs that are hard to get elsewhere.

    I have a relatively mild case of CFS (26 years, though), so if I had lots of money, I'd go see Dr. Klimas. I don't think I need a "big gun."
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Buster,

    It is wonderful that you have the opportunity to get some good treatment--so glad for you. And yes it is very confusing to know where to go and what kind of treatment to get. Of course knowing where you fit among all the subsets would probably help you, as different specialists have better success with different sets of symptoms and onsets.

    One way to do this is to contact people on different threads who report success with different treatments and to try to gauge whether you are "like them" or not.

    I have to second Xandoff though, as I am one of the members here who made the huge effort to see a specialist who was very experienced in giving GcMAF and it has helped me a lot. I was thoroughly (extremely thoroughly!) tested to see where the abnormalities were and GcMAF and Nexavir (and a lot of other things) seemed like they would help--and they did.

    Of course they don't for everyone--no treatment does. But way over half the patients who try this (and are screened ahead of time for possibilities that might make them poor candidates) do respond (get better) to a greater or lessor extent.

    I can't speak to the other successful treatments offered by other specialists because I haven't had them. But I hope others who have tried them will report their response here to give more ideas of where you might fit with a certain specialist.

    Best wishes,
    Sushi
     
  12. Buster

    Buster

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    Hi Sushi, thanks so much for taking the time to reply. Can you suggest how I can determine my subset - i.e is there a thread which lays out the subsets and the symptoms that define them?

    I've been ill for nearly 5 years. In my case I had sudden onset (flu-like symptoms), and I get very ill (tired, foggy, headaches, body aches, sometimes a fever-like feeling) when I do too much physical stuff (but mental activity can be a trigger as well) - on good days I can walk 20-30 minutes, on bad days I need to be in bed all day (rare). Before I knew about CFS/ME, after about 1 year of being ill, I decided to try to exercise my way "through" the fatigue and nausea, it made me bed-ridden for 1 week, and I never got back to the level I was at before making the bad call to work-out. But I have gotten a bit stringer over the past 2 years. I can not work, but can take care of myself, cooking, grocery shopping, I can get together with friends sometimes. On a good day I've got maybe 2-3 hours of doing non-stressful stuff like chatting, or reading before I burn out, but I can't have too many back-to-back days of maxing out, or I go downhill. I've seen a doctor here is Canada (Dr. Bested) who is a major name for treating CFS/ME here. She has done a lot of blood tests (initially) and asked questions to diagnose me with CFS/ME. After that though, she mainly gives advice on diet, some basic vitamins, probiotic, and pacing -we haven't tried to be any more proactive. So that's my background :)

    Can one tell me my subset with that basic information, or is there more to it?

    Can I ask what specialist you saw to try the GcMAF? Did you do all your testing through him/her?

    Thanks again for your help, Sushi.
     
  13. Buster

    Buster

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    Thanks Xandoff, I'll let you know about needing a bud for Belgium! I will read up on it for sure. You mentioned that Dr Dereck Enlander or KDM in Belgium would be good if one is a good candidate for GcMaf. Is there a particular type of patient that would be suited for Whittemore Peterson Insitute or Dr. Nancy Klimas?

    Best of luck with your testing, hopefully you'll update us all with your Nagalase test, and if you end up trying GcMAF.
     
  14. Buster

    Buster

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    Thanks for the info Madietodd - I've asked others, but what is Dr. Klimas best at vs. Dr.Enlander or KDM? You mention she is not a "big gun", but I'm not too sure what you mean.
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Buster,

    If you sign into chat (bottom right hand corner and click on chat next to my name) it would be easier to have a "back and forth" discussion.

    Best,
    Sushi
     
  16. madietodd

    madietodd Senior Member

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    Sorry if I confused you. As far as I know, Dr. Klimas isn't involved in clinical trials of CFS drugs like Dr. Enlander, and doesn't have access to GCMaf like Drs Enlander and KDM. Since i don't think I need such 'big gun' drugs, I would choose a doctor working with patients like me.

    Dr. Klimas has an excellent reputation in terms of comprehensive testing and working well with patients. It's also easy and cheap to fly to Florida from here, and it's cheaper to stay there than New York. I would assume that healing would be a process involving multiple trips and possibly expensive treatments, so I would conserve my money where I could.

    Good luck!

    Madie
     
  17. taniaaust1

    taniaaust1

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    Probably would be a good idea if someone set up a thread to discuss subgroups.

    There isnt any set agreed on subgroups .. different ME/CFS specialists/researchers have broken us down in different groups depending on different things...some only choose certain ME/CFS patients to be in some studies based on certain findings. Always best to check if you match the choosen study partipants when reading the results of a study.

    One (I think it may of been a CFS mitochrondrial study) came to the conclusion there are seven different subgroups (they found that CFS patients with certain mito? findings were of certain symptom groups). I remember there was one subgoup there in which the FM side of things played a huge part and for another group brain symptoms played a big part in their illness overall. The blood test could tell which group the person would be.

    With the subgroups often mentioned thou, one often fits into several different subgroups cause there may be overlap

    Most would agree that there is like a viraly/immune issue subgroup.. who have reactivating viruses and other immune findings may be found eg low NK cell function, low white blood cell count/ borderline low neutrophils which can indicate chronic infection, high lymphocytes etc

    This subgroup may crash with viral like symptoms (actual fever, sore throat, swollen glands etc).. classical flu like symptoms. Some ME/CFS studies are now only recruiting those who have some actual test result abnormal immune findings too (I think the WPI in its study partipants only uses ones with certain immune findings too). Id think classical ME would be this subgroup.

    For this subgroup .. Valcyte and other anti virals may be used or I'd think that cancer drug which kills off the B cells could well be help to this group. ARVs have been used in some patients of this subgroup.

    Other ways ME/CFS people can be subgrouped are
    - the sub group who has a lot of endocrine issues going on
    eg thyroid issues (hypothyriodism with ME/CFS subgroup)
    - the low cortisol group who may have cortisol insufficincy (hypothalamic-pituitary-adrenal axis issues subgroup)
    This subgroup "may" respond some to hormonal treatments.
    There is a subgroup of CFS..forgot exactly which symptoms come under that group, in which I think it was 18% of them have end up developing a rare thyriod kind of cancer.

    - Autonomic dysfunction subgroup which includes those who have POTS and NMH. (things like low blood volume may be involved in this group)

    - ??? Maybe the group which responds to the Methylation Protocol is its own subgroup of our illness?

    - The Multiple chemical sensitivity group.. could be seen as its own subgroup with its own specialised issues

    ....

    Your question on Ampligen.. I myself would not try that, I would be more likely to trial chemo drugs then Ampligen.

    Thou it did work miracles for some WHILE they were on it (most crashed back to how they were originally or worst once they stopped it), over the years.. Ive heard so much bad stuff about that company and that drug, so many of the patients on it ended up worst, I wouldnt trial that.

    Here's something I havent read in the past but just another story like the many stories Ive read before from a person who was on it

    "Before I took Ampligen I read everything about it available to me and spoke with as many previous patients and physicians as I could. I discovered far more negative experiences than positive ones, but I persevered because I thought that I could not get any sicker believing that, at worst, the stuff would have no effect. Many others felt the same way. But I was wrong. We were wrong. Some were dead wrong."

    " It was not until week 22 that I was told by 2 separate Heb employees that in candidates for whom pain is a prominent symptom that Ampligen should always be avoided as it is likely to exacerbate pain. Often permanently! Which it did. At the end of my therapy, I was considerably sicker than I ever had been before Ampligen; many other patients had the same experience. Thirteen years have passed, and I remain sicker than I was before Ampligen, right through today. My experience is far from uncommon."

    above quotes were from http://www.ncf-net.org/forum/2011fall2.htm
     
    SaraM likes this.
  18. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I would just keep doing what I am doing. Buying my supplements, getting my blood tests and seeing integrative doctors. :D
     
  19. Buster

    Buster

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    taniaaust1, thanks for the info. you have really peaked my interest here, I have had thyroid cancer (total thyroidectomy done a few months after I got ME/CFS), and I have multiple chemical sensitivity. I am mainly curious about the thyroid cancer aspect of what you wrote. Any idea where you read about that? I seen an endocrinologist, and all my hormone levels are normal with the use a Eltroxin. Still, I'd be interested to learn more about a sub-group who have high rates of thyroid cancer.
     
  20. SaraM

    SaraM Senior Member

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    Tania, very interesting info. Thanks a lot. Starting a thread on subgroups is a wonderful idea.
     

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