Update about my recovery...and reply to Jerseydevil

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Update about my recovery...and reply to Jerseydevil

Postby vanislegirl on April 22nd, 2010, 12:05 pm

Hello all....been awhile since I have been here, as I've been doing so well in my recovery. However, I haven't forgotten about how horrible I felt for 5 years with CFS, and am often thinking about what many of you are still going through.

I received a private message from Jerseydevil, but have not been able to reply to him/her through their private message link, for some reason. So I am posting my reply here, as it is also an update of sorts. If any of you are chatting to Jerseydevil, could you please get them to read this post? Thanks!

Hello Shawn.....I haven't been on this site for several months, but received notification of your private message this morning.

I am doing very well, and consider myself to be 100% symptom free. I'm 47, but actually feel better than I did at 35. My husband, who has always been healthier and had more stamina than me, is now telling people that I'm in better shape than he is! That's truly saying something.

I do still take the supplement Immunocal, which is a natural source of cysteine. Cysteine is needed for the body to make an amino acid called Glutathione. This is essential for detoxing the body on the cellular level....tons of scientific data to back it all up, very safe and was the catalyst in my turn around. One drawback that a lot of people (including myself) don't like is that it is sold by MLM....mult-level marketing....and thus turns some people off. I balked at that at first as well, but now I'm so thankful for that product that I wouldn't care if it was sold on the black market.....it's awesome. You have to buy it through a distributor, and you can become a distributor yourself for $40 CDN....after that it will cost you about $63 CDN for 30 pouches. Otherwise, for one-off orders, it is $90/box I took 2 pouches a day for 6 months, then tapered to 1 a day.
This line has been removed as it contained contact information for people wishing to purchase Immunocal....I don't want it to appear here as some might think of it as solicitation.

However, Immunocal was only PART of my recovery, although as I say it was certainly the extra boost I needed to get there. I also completely changed my diet....chiefly giving up red meat and sugar...started exercising every single day (Wii Fit was a huge help there!), weaned off all my medication, and learned to deal with my paralyzing anxiety. My "a-ha" moment came when I read a book by Dr. Mark Hyman ( who has been in the news a lot lately because of his volunteer work in Haiti) called The UltraWellness Solution. In it, he talks all about the different systems in the body, and how everything get screwed up when those systems are toxically impaired.

Immunocal, I believe, helped detoxify my body and get what Dr. Hyman calls the methylation and sulfation trains running smoothly. Then, clean up your eating, reduce your stress as much as you can ( I had to use a little Ativan to do this and get off the Gabapentin), learn to meditate and exercise, exercise, exercise....your brain is broken, and it is telling all your peripheral nerves to make your muscles twitch.

I believe that I had about as bad a case of Cramp-Fasciculation Syndrome as a person could have, and now I am completely recovered, but it was a multi-stage process. A lot of people on this site don't want to acknowledge the role of depression and anxiety in this syndrome, but it is HUGE! It's a chicken vs. the egg argument....does the anxiety cause the twitching, or does the twitching cause the anxiety? I don't know....but I do know that it all starts in the brain, and the body chemistry affects the function of the brain and nervous system. So, for people that said to me "it's all in your head", I said to them, "You're right, it was in my head, and now it's manifesting itself in my body!"

Good luck, and I hope you get on your path to recovery soon. If you have anymore questions, fire away....I can only tell you what worked for me.

Kind regards,
Jeannie
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Re: Update about my recovery...and reply to Jerseydevil

Postby jcrissman on April 22nd, 2010, 12:16 pm

Glad you're better! Just wanted to point out that red meat definitely is not a cause. I'm just shy of 38 and haven't eaten red meat in about 23 years.
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Re: Update about my recovery...and reply to Jerseydevil

Postby vanislegirl on April 22nd, 2010, 1:17 pm

Definitely not saying that red meat is the cause....in fact, I don't think there is any one or even more than one cause of this affliction. I think it's just a general overload on the body from stress, viruses, diet, and environment that manifests itself as twitching....and everyone has a different tolerance level, and a different ability to synthesize all these stressors.
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Re: Update about my recovery...and reply to Jerseydevil

Postby Barbie800 on April 22nd, 2010, 2:41 pm

Thanks for the post. I actually saw one of your messages on a CFS board (or maybe it was Isscas) about that book by Dr. Mark Hyman. I plan on reading it. I also felt great when I was excersing to the Wii Fit. Your story is inspiring since you recoverd. I hope one day I can. Thanks for the input.
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Re: Update about my recovery...and reply to Jerseydevil

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