Treatment for CFS

[halbashes]

This may be a broad question, but what is the recommended treatment for Chronic Fatigue Syndrome?

[PlateletGal]

But it is in our heads... (you'll love this !)


Below is the link to Dr. James Baraniuk's presentation on cerebrospinal fluid proteins in Chronic Fatigue Syndrome and Gulf War Illness patients. This information was presented at the Chronic Fatigue Syndrome Advisory Committee (CFSAC) in Washington, D.C.

My favorite quotes from Dr. Baraniuk is when he said, "’It’s all in your head.” That’s now the mission statement for our laboratory,” said Dr. Baraniuk. “It’s all in your head because that’s where most of your nerves are. And that’s where the problem lies, I believe.”   ; ^ )   HIGH FIVE, DR. BARANIUK !!!!!

Dr. Baraniuk is recommending that physicians treat migraines in CFS patients.

"Migraines plus CFS suggests: Autonomic abnormalities Neurogenic inflammationvery likely contribute to the high level of overlap between migraines and CFS. From a treatment perspective, if you identify migraines in 88 percent of your CFS people, you should get them started on appropriate therapy."



http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac20081028min.html



http://www.medhelp.org/posts/Fibromyalgia---CFS/Dr-James-Baraniuk-presentation-on-cerebrospinal-fluid-in-CFS-and-GWI--CFSAC/show/723670

[lvfrogs]

Thanks PlateletGal for telling me about the other supplement. I believe I read about that in Dr. T's book. I will check out the site you sent. and you are so dead on about the doctors. Most doctors blow it off as stress or all in our heads. I am so glad that you have a specialist that has been treating that long. I am still searching but in the meantime will keep researching. Thanks for everything!

[PlateletGal]

oops --- I forgot to add an important supplement that I recently started taking... glutathione.

For more information on glutathione deficiency in CFS... visit: http://www.phoenix-cfs.org/GluAACFS04.htm

[PlateletGal]

It helps and works... doesn't it ? You know I'm concerned that the average physician, who probably believes that these conditions aren't real and/or are psychological conditions, are prescribing medications for fibro & CFS. I've learned to follow the physicians that keep up to date and KNOW about these conditions and are interested in the causes and treatments for fibro/CFS. Some of these physicians, like Dr. Shaw and Teitelbaum, have fibro & CFS themselves. So I choose to listen to what they have to say and my specialist (but only because he's been treating CFS since the '70s ; ^ )   )

[lvfrogs]

PlateletGal gave you all the supplements that I take, so that is good. She is right on about that. I buy my D-Ribose at the health food store and even online if I am not feeling well. I believe in the book that I mentioned, they said to take the D-Ribose for only about 4 months. I haven't been on it that long to know whether or not I feel better yet. I had a minor setback in finding out that I have heart disease - Cardiac Spasms and am undergoing treatment for that now too.
Finding a good doctor is key but doing your own research is essential. Good luck and keep in touch!

[PlateletGal]

Magnesium is vital (IMHO) in people who have CFS or fibromyalgia. I think this article here sums it up pretty well. It also explains the role of magnesium and calcium:

http://web.mit.edu/london/www/magnesium.html

Since many of us have digestion issues, I purchase the powered magnesium and take the recommended dosage.

Are you also taking B12 drops ? If not, I would also recommend those for nerve help.

I hope this helps ! !

[supermomma531]

Good Morning Everyone! I hope that everyone are having a good morning! It's unfortunately raining here so my fingers are as stiff as boards. I figured that maybe a little typing might help to normalize them. Anyhow, I was just reading that indigestion problems come along with the fibro. I was sort of surprised cause I've had this problem for years. It's gotten to the point where I can hardly finish a meal anymore. I'm on Zantac and have been for a little over a year. I used to be on Lozec but now have no insurance so now am stuck taking this stuff that hardly works. So here's my questions, what else is there that can help with this problem. Also too, I heard that calcium magnesium is suppose to do something for fibro but what is it suppose to do? And how much of it is suppose to be taken? Is it suppose to be taken as 1 pill or 2 separate pills?Any kind of info would be greatly appreciated. Thanks in advance.

[PlateletGal]

P.S. ~ I also had POTS (postural orthostatic tachycardia syndrome), but after several months on my pathogen killing treatment, it started to slowly GO AWAY ! I rarely have problems now and my blood pressure is finally somewhat stable !!!

[PlateletGal]

If you can't find D-Ribose at your local health food store, then you can purchase it online. I used to take D-Ribose (and then after about 6 months, it didn't work so well), so now I'm taking (in addition to the pathogen killing treatment that I'm on:

COQ10
magnesium (powered)
ACTYL Carnitine
B12 Complex (sublingual)
Omega 3 Fatty Acids (Flax Seed Oil or Fish Oils)
Vitamins C & E

I'm finding out more and more how picky you need to be with purchasing the right brands. Since most of us have digestion problems, try to pick gel tabs, liquid or powered form (over tablets).

[halbashes]

Thank you for the constant flow of information!  Regular exercise is a bit difficult for me because of my Dysautonomia, but it's something I'm working on.

I will be sure to ask my doctor about supplements.  (It will be six months or more before I'm able to see a CFS specialist.)  I've actually heard of D-Ribrose, but couldn't find it at my local pharmacy.  Is it normally difficult to find?

Thank you for the book recommendation as well!  :)

[lvfrogs]

Halbashes,
I take both those supplements plus L-Carnitine and D-Ribose, both of which I take after reading that book "From Fatigued to Fantastic" by Dr. Teitlebaum.  That book is wonderful. If you don't have it, you should read it. It cost me $10 from Amazon.

PlateletGal's ideas are dead-on. I also suggest that if you exercise, you don't overdo it. I walk and I also line dance, although not like I used to. On the day after I take my line dance lessons, I am completely wiped out. They usually recommend mild exercise, just for that reason. Anything more and it can affect you for days.

Good luck and keep in touch!

[PlateletGal]

1. Pace yourself
2. Ask your physician about other supplements that many CFS specialists recommend
3) Keep your stress levels as low as possible and do whatever you need to do to make that happen.

Good luck and please let us know how your appointment goes !

[halbashes]

Thank you again for the information.  Is there anything I can be doing in the meantime, before I find a CFS specialist?  Right now I'm taking a multivitamin and Co-Enzyme Q10, along with my regular medication.

[PlateletGal]

CFS is a very complex immune disorder and it affects every organ in your body. What I've learned and I believe Prof. Nicolson said this himself when he was here, is that if you have CFS or fibromyalgia... you often will need to educate your physicians on your disease.

These are just a few of the CFS/fibro experts.... so these are the people that I listen to and I list reasons why. Several of these physicians listed have a chronic illness (or should I say, "had") themselves:


http://www.medhelp.org/user_journals/show/44526?personal_page_id=1064

[lvfrogs]

To halbashes,
I don't think there is anything "simple" about CFS. I wish there were. If you can find a doctor who actually believes in it and is willing to help you, that is the first step. Don't give up trying!

[halbashes]

Thank you both for the information.  I guess I was hoping there was something "magically simple" that worked for everyone.  I appreciate your responses.

[lvfrogs]

I would do what she recommended, google the Co-Cure list and also, I bought a book called "From Fatigued to Fantastic" that I have found helpful so far. I have just started the procedures he recommends so can't tell you if they work or not, but just reading the book was helpful. Good luck!

[VaBreeze]

http://www.medhelp.org/health_pages/Fibromyalgia/Treatments-for-Chronic-Fatigue-Syndrome/show/453?cid=39

We have some options in our Health Pages.  I hope something here can be of help to you.  You can also Google Co-Cure's good doctor list to see if there is someone in your area that specifically treats CFS.  

Take care.