The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Over a year of feeling better

Discussion in 'General ME/CFS Discussion' started by Gandalf, Nov 1, 2014.

  1. Gandalf

    Gandalf

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    Hey guys. I just wanted to give you a small update on how I'm doing.

    The last year had been a relief. Everything is just much easier since I don't constantly feel like crap.
    I was able to finish my bachelors and am now starting my master degree.
    After feeling better for so long, its hard to remember how bad I once felt - day after day... This undescribable exhaustion..and many of you still have to live with this.

    I'm very greatful I found this forum. There is a lot of useful information on here. My advice to all of you is to keep educating yourself and to also try everything out - even if you don't think it will work.

    As an example: I had tests done regarding gluten intolerancy via my doctor. The results were negative.
    It was only til after I found out there is a condition called "gluten sensitivity", that I tried cutting out on gluten. And it helped a lot... So you see: Education!

    After feeling better, I have found motivation and energy for other things than just health research ;)
    I have developed an interest in economics and I know this is a bit off-topic - but in your own interest you may want to inform yourself about precious metals and the market situation in general - you should especially look into silver.

    With this said I wish all of you the best luck for your health and finances ;)

    with best regards
     
  2. gregh286

    gregh286 Senior Member

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    Hi gandalf.
    Great to hear.
    What helped you to recover.

    Thanks
    Greg
     
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  3. Gandalf

    Gandalf

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    Well, just the basic stuff. Methylfolate, Methyl-B12 helped the most. But I'm taking a b-complex and also some other supps like potassium and vit d.
     
  4. Martial

    Martial Senior Member

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    Interesting so you used stuff from Fred's protocol mainly? Was it an up and down process for you, or did you just continue to improve until everything resolved?
     
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  5. taniaaust1

    taniaaust1

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    Do you know if you had MTHFR mutation?
     
  6. Cheesus

    Cheesus Senior Member

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    Are you fully well? Like you could go out for a jog then go to dinner and the movies well?
     
  7. Gandalf

    Gandalf

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    I do not have MTHFR mutation. So I really don't really know why it helps - I have some hypotheses though.

    The B12 and methylfolate gave me like 50-70% improvement instantly - especially the B12 shots were great.
    And then I had a few more steps to tweak the supplements I take. Also I tweaked the foods I ate. I found out low gluten, low glycemic index, low fructose and low histamine helps me. I'd say I'm at 90% now. Its just great.

    Yeah its incredible. I can do almost everything without beeing exhausted. I can even walk around the city for 8 hours without feeling a negative effect the next day. (Of course I will be exhausted at the end of that day, which is normal)
    I remember a year ago I got up in the morning and was totally wasted just from driving to my university...It sucked.
     
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  8. Matthew Jones

    Matthew Jones Senior Member

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    That's great to hear you are better, thanks for the update. :)
     
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  9. Helen

    Helen Senior Member

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    Hi Gandalf,
    Good to hear that you have got your health back. What you tell above is really interesting. Would you mind sharing your hypotheses?
     
  10. xchocoholic

    xchocoholic Senior Member

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    Congratulations ! It's always good to hear recovery stories.

    We see improvements like yours all the time in the gf and elimination diet arena. Sure not from everyone but most improve if they really look at what they're eating like you did.

    Since you're heading down the supplement route, I wanted to give you a head's up just in case ... I was actually feeling much better after just making the diet change. In fact most of the improvements listed in my signature were purely from diet.

    I got into using supplements and other stimulants for energy and needed sleep supplements to counteract the insomnia they gave me. Doh ! They both worked great separately and together for awhile tho so I may pulse these.

    I'm still working on this but I feel so much better off these for now.

    Tc .. x
     
    Last edited: Nov 3, 2014
  11. Gandalf

    Gandalf

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    I feel strongly, that the bloodflow to my brain is suboptimal when I lay down - I can feel it. Also I have some issues with my neck. So I think this causes an increase in NO in my brain. The B12 is able to neutralize this and thus make me feel better. I will have to do a functional x-ray of my neck to verify or dismiss my hypothesis.
     
  12. Martial

    Martial Senior Member

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    Ever get checked for POT/S, EDS, or sticky blood issues (genetic/structural abnormalies) , if not then various infections ( Raised inflammation of brain and low blood flow to supply)? I have the hypo perfusion issues from a brain infection and had an abnormal MRI, unfortunately the thousand things I take for it don't help much for the crashes still. Hypo perfusion of the brain can cause a massive array of symptoms that can all be very debilitating for sure. Glad to hear you are on the up mend now and fully living life, that is great and gives people assurance in their own recovery. :thumbsup:
     
  13. zzz

    zzz Senior Member

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    First of all, @Gandalf, congratulations on your recovery! It's not often that we hear of someone who has escaped the claws of the Beast.

    Please be careful, though. As of now, nobody knows whether this illness can ever be completely cured, or whether the best that happens is that it goes into complete remission. It's safest to assume the latter, and increase your activity level gradually. Really overdoing things could result in PEM, and the return of the illness. There are many unfortunate stories of this happening to people here.

    Whenever I hear of someone who has genuinely had ME/CFS and then recovered, the first question I ask is, "How long were they sick?" From your profile, I see that you were sick for four years before recovering. Spontaneous recoveries almost always happen in the first few years of this illness, and in general, ME/CFS is much more amenable to treatment during this time. Treatments that have modest to moderate effect for long-time PWME can often drive the disease into complete remission during the first few years. Estimates vary, but the window where this is most likely seems to last somewhere from two to five years from the onset of the illness. The length of this window may also vary due to personal circumstances.

    I think there's no doubt that what you did for your treatment and your prompt attention to this illness was crucial to your recovery. It emphasizes how important it is to get diagnosed as soon as possible and to start an effective treatment. These treatments can still work for the rest of us, but they can take a lot longer, and it's much harder to achieve complete remission. However, examples like yours are always encouragement for the rest of us, and I wish you continued good health. :)
     
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  14. caledonia

    caledonia

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    Thanks for the update, and congratulations on feeling a lot better.

    I just found out some interesting information that gluten can block B12.

    Question - do you have MTR, MTRR or any of the glutathione mutations (GSTP, GSTT)?

    How about these HLA genes (these are related to celiac and gluten sensitivity).
    HLA rs2858331 - risk allele = G
    HLA DQA1 rs2187668 - risk allele = T

    Any known toxic metal exposure, especially mercury or lead? Did you have mercury fillings, or live in 1970's or earlier when there was leaded gasoline and paint?
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    @Gandalf I apologize if this was already stated and I missed it but what was the suspected cause of your ME/CFS? Was it viral and did you take an anti-viral medication at any point in your treatment? I was also curious what symptoms you had before going into remission? But mostly I wanted to say congratulations and I am always thrilled when I hear these stories and they give me hope!
     
  16. Helen

    Helen Senior Member

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    Thank you for sharing your hypothesis. Good to hear about your recovery from the protocol you described. I agree to all the others; congratulations and best wishes!
     
  17. physicsstudent13

    physicsstudent13 Senior Member

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    does anyone know where to buy cheap vit B injections?

    According to my neurologist professor friend I think you can go as high as 2500mcg a day orally with b12, I'm not sure if the dose is lower for sublingual methylb12. I've been taking b complex injections every day, but I'm running out and I don't know where I can find cheap injections. It does seem to help energy to do b complex and vit C injections and since they are mostly water soluble vitamins they may be ok at this dosage.
    however I didn't have any help to my brain fog with the vitamin injections or the nootropics that I tried including alpha GPC. I did take klonopin+gabapentin with the asv and that helped the fogginess.

    anyways I don't see any cure for my fogginess except maybe tracheotomy
     
  18. chipmunk1

    chipmunk1 Senior Member

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    This is where the majority of the "i got better with positive thinking and you can too" stories that tend to haunt the forums come from.
     
  19. Tammy

    Tammy Senior Member

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    So very happy for you! Yaaaaaaaaaaaahoooooooooooooooo!!!!!!!!!!:thumbsup:
     
  20. jerrymcfadyen

    jerrymcfadyen Senior Member

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    Thanks for giving us some hope.
     

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