Discussion in 'Fibromyalgia Main Forum' started by deliarose, Aug 25, 2005.
I saw yr post to Richelle, and was interested in your DIY treatments..
Can you share?
I'd be happy to share whatever I know. That's the beauty of this place. Someone shared with me, and I try to pass it on.
Is there something specifically you had in mind or would you like to know what I do to try and combat these ilnesses on a daily basis ?
Is there anything you are taking right now .. rx or natural ? Just curious as to how you are feeling.
Let me know what you are interested in and we can go from there.
Well, u tell me what u think I need to know.. Here's a little background:I am 37,female, have had CFS for 10 yrs. I take Klonopin for restful sleep ...0.25mg ....and 50mg of Zoloft for cognitive function.
I recently began taking a supplement called VegEpa from England to improve mitochondrial function. That has made a big difference to my energy levels.. and ties in wiht a lot of the research i am reading about at the moment.
(more on that later if you're interested)
But I still really struggle with brain function.
So I'm interested in anythg to improve overall physical conditioning, but specifically anythg that could improve cognitive function.
I know of several things that can help clear the mind.
I even take some of them !LOL
Firstly , let me apologize for taking so long to get back to you. Work and then not feeling well got in the way of my message board time.
L-tyrosine is for fatigue and depression. It works on
dopamine. US military is researching it's effectiveness in fighting fatigue related memory impairment. DMAE has been used quite successfully for alzheimer's disease and ADHD.
Choline, phosphatidylcholine ,lecithn, and alpha-GPC all help in the CRS (can't remember stuff) disease.
Thiamine disulfide diisobutyrate ... synonyms are = sulbutiamine, and arcalion. Precurser to the vitamin thiamine. 2 thiamine molecules are bound together by a disulfide bridge. It crosses the blood brain barrier and has about 5hr half life. Will feel effects in 1-2 hours.
It is Good for increased resistance to physical fatigue, improved memory and learning effeciency, improves metabolic function in cerebral cortex. Has been used successfully for mental clearity, mood elevation, ADHD, verbal recall .... improved word re-call and to speak more clearly.
One of my all time favorite supplements is called Power Drive. It has l-tyrosine 3000mgs, b-6 20mgs, phosphatidlcholine 1000mgs and DMAE 200mgs. It comes in powder form and you mix it up in 1/2 to 3/4 cups water. Taste like a tang or orange cream. Being amino acids, you have to take it on an empty stomach. Can be taken 2xd .. which I do.... and it works. 200 mgs of DMAE is not enough so I supplement it with more. Recommended dose is 1000mgs.
You can goggle Power Drive by BiotestEdge.
I also take lecithin ... which is easy to find at a dose of at least 1200mgs.
I have 2 other supplements I take that have alpha-GPC in them at 1000mgs.
I have received the thiamine disulfide supplement. You can google those long words or sulbutiamine. I can't say yet how effective it is for me .... I will keep you posted though.
I do have an rx for provigil that I have been taking for about two years now. It helps a great deal with the fatigue, but I truly feel I can do better for myself with amino acid treatment. I am VERY glad I have that prescription, but I would be also very happy to not have to rely on them. Have not used provigil for almost three weeks now ! YEAH !!
I hope this helps you some. I don't believe I would trade my power drive and DMAE for all the gold in Fort Knox. I might end up with all the gold, but be too fibro-fogged to spend it!! LOL
I would love to hear more about your mitochondria research and treatments. I very much believe we have mitochondria disfunction. I could use your in-put.
I hope you find this helpful. Again, please forgive me for taking so long in getting back to you. That was rude of me and I try to respond to folks rather quickly.
For Deliarose ......
Bumping once more for her .....
just got back from N.Carolina where I was seeing Dr Charles Lapp.. so just saw yr message now... Tuesday nite...
Some useful stuff there ....and I will get back to u on the mitochondrial thing..
After you rest up, I'd love to hear about your appointment with Dr.Lapp... along with your mitochondria news. Take care of yourself. Traveling can wear us out...
It was interesting. He pretty much stuck to the protocol that he has outlined elsewhere..
I had already been taking all 3 prescriptn meds he recommended,but at lower doses. He said the results of a sleep test I had done previously indicated a major sleep problem, so he increased the meds for that.
He also recommended Vit B12 intravenous injections, pacing, graduated exercise, and Efamol.. which i think is Omega 3 and 6.
I was already taking a supplement from England called VegEPA, and he said that was fine.
One thing he recommended that I have not tried yet is cognitive therapy.
I was under the impression that CBT was an exercise in accepting yr limitations, but it turns out it's more about using exercises to stimulate yr brain.
I may pursue that.
Ultimately, my own primary care doctors had all recommended these things at one point or another.. but had not been v. skilled at tailoring them to me, or reading my progress.
Jury is still out, but I'll keep u posted.
I could say more, but am reluctant to in such a public place. If u want to hear more, probably best to use email.
Thank you so much for taking the time to let me know what you thought. I've been lucky so far with my doctor's
treatment plan. After reading much about Dr. Lapp, I
appreciated his expertise in CFS/FM.
Like you, my doctor seems to follow the same path. I hope you continue to feel better and thanks for keeping me updated.
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