Tuesday, March 09, 2010

Trial of D-Ribose

Feeling a little better today but still had bad OI and very limited stamina. The boys are both doing well, though, and the sun is still shining (the rains come tomorrow), so I'm not complaining. I love the sunshine!!!

I'm trying something new, for the first time in a while. I've been in such bad shape this winter that I held off on trying anything new, waiting (in vain) for some kind of steady state. At my last visit, my Lyme doctor (I got Lyme last year, on top of CFS) suggested I try D-ribose. I already had a bottle at home, so I decided to give it a try. It's a sugar that our cells need in order to produce energy, one of many energy pre-cursers in short supply in those of us with CFS. It's also supposed to help with exercise intolerance, which would be the ultimate ecstasy for me right now, as my stamina is terrible.

Here's a recent study of using D-ribose for CFS that had excellent results. The most comprehensive information I found on treating CFS with D-ribose was in this article on Dr. Teitelbaum's website. Many of you remember that I had some major problems with Dr. Teitelbaum's appearance on the Dr. Oz show where he talked about CFS. I do strongly object to the way he portrays CFS in his writings and public appearances - his burring of the line between chronic fatigue and CFS, his overzealous promises of recovery (which we all know is not that simple), and his promotion of his own line of supplements. HOWEVER, all that said, he is knowledgeable about certain aspects of CFS, and his website does contain some good information (if you can get past the sales pitches).

In my own limited experience, I haven't had much luck with other energy supplements I've tried. I think it's because the problems with our cells not producing energy efficiently are effects of CFS, not causes. The root causes lie in our dysfunctional immune systems, our messed up autonomic nervous systems, and our poorly functioning endocrine systems, and I believe that energy supplements won't have much effect until those underlying problems are dealt with. Unfortunately, no one yet knows how to fix our dysfunctional immune systems, though treating underlying infections seems to help.

So, I'm interested to see if the D-ribose helps at all, but I'm not too optimistic. I hope I'm pleasantly surprised. Most studies show it takes about 10 days to see results; I just started on Friday. I do suspect that it's already interferring with my sleep - I've had trouble sleeping at night the last couple of nights and falling asleep for my nap today. I'm going to try changing my dosing schedule to see if that helps.

I'm very interested to hear whether anyone else has tried D-ribose and what your experiences have been.

P.S. Did anyone catch House last night on TV? The featured patient was an obsessed blogger!


At Home on the Rock... said...

Hi Sue, I really want to try D-Ribose but haven't as of yet...mainly because the two stores I've tried did not carry it. I know Dr. Myhill highly recomments CFS patients use it though ( http://www.drmyhill.co.uk/drmyhill/images/7/76/Cfs_book_27.pdf )

Renee said...

Hi Sue
My brain is not working too well today but I have heard of this for Lyme too...but also read something about long term affects. Since I cannot remember or give backup for this negative info I would just say to research it thoroughly concerning both Lyme and CFS ~ which is really not necessary to say since I know of no one else who is as good at research as you are! Sure hope it helps you! Sorry this continues on....did it get worse with the placquinal? Joel is back on that now. it helps his arthritis pain, too.

Sue Jackson said...

Thanks for the heads-up, Renee. I have an appointment with the lyme doc this week, so I'll ask him about any adverse effects long-term.

I think the Plaquonil is helping. I don't think this is herx, just CFS. I think the lyme doc will probably go up on my Plaquonil dose this time - I'm still only taking a half pill.


Toni said...

I tried D-Ribose and it didn't help, but then none of the energy boosters help me (whether it be low-dose anti-depressants or provigil). They just make me wired. That said, it's definitely worth a try because some people do experience improvement on it. I agree with your plan to increase your dose very slowly so as to minimize the sleep disturbance.

dominique said...

I'm actually thinking of adding this next month. I was interested to see how it works.

As for Dr. T, I can't stand to listen to him anymore for the reasons you stated. But also, because I tried his products. Wow! I felt horrible after using them. The crash was awful.

This idea that sugar will make us feel better is beyond me. If I recall correctly, many of his products contained a lot of sugar. I do very little sugar so it really did a number on me.

Anyhoo, I'm sorry to hear you are still struggling. Sending you a BIG gentle hug! :-)

Sue Jackson said...

Dominique -

Very interesting to hear your reaction to Dr. T's supplements! I agree with you on sugar in general (though there's nothing wrong with s little treat!), but from what I;ve read D-ribose is a very specific sugar that our cells use to produce ATP aka energy. I read the label to Jamie, who's taking Biology right now, and he said, "Hey! I understood all that stuff!" I keep telling him all that he's learning about the Kreb's cycle and mitochondria, etc. is at the heart of CFS.

We'll see what happens - I skipped the dinnertime dose today and will hopefully sleep better tonight.


Dusty Bogwrangler said...

Again so informative! I'll watch and learn. Yeah, I take Teitelbaum with a pinch of salt too.

I hope you are feeling better. (())

Sue Jackson said...

Jo -

Since we have OI (which Tetelbaum barely mentions in his book) maybe we should take him with a LOT of salt!!
ha ha

Definitely slept better after skipping the dinnertime dose. Now I have to adjust the timing of my afternoon dose to see if it helps my nap...


kimberly said...

Hi Sue-
I also tried D-Ribose for about 6 months and it didn't do much for me.
I tried again last year for a couple months and still nothing.

I am willing to try just about anything the doctor suggests though.

I hope you have better luck with it!

Lori P said...

I've always wondered just how much those supplements help. Hope you get good results and can feel better soon.

Anonymous said...

My friend tried D-Ribose just last week... it didn't help him much, but considering another brand before giving up on it completely. Hopefully it doesn't end up on the same stack as the CoQ10, the L-Tyrosine, the Modafinil, the Cordyceps, the green tea extract, the adrenal extract, the heavy dose vitamin C, the oregano oil and the valerian root... (We've tried a lot of things...!)

Still want to try DHEA and LDN. (You need a px for DHEA up here in Outer Canada :D )

Yes, a LOT of salt for some of these treatment regimens. Your sense of humour is great!


Annie said...

I've tried D-Ribose for multiple periods of time and I can't really say it's worked for me. I think it has some brief pick-me-up effects but it really didn't change anything in terms of pain or overall functioning.

Hope it works for you!!

Sue Jackson said...

D -

Yes, I have my share of tried-and-failed supplements, too! Though often, I have to give up because a supplement upsets my stomach (vitamins B12, C, D, etc.), and so far D-ribose seems to OK in that regard.

The articles I read said it may take at least 10 days to start to see an effect, so your friend may want to hang in there longer. I just picked up some more today so I can give it a solid try...I'll let you know how it goes!


Kerry said...

Looking forward to hearing if the D-ribose helps Sue. This is the first time I've heard of it. Glad you are feeling a little better.

Appreciate the way you explain the underlying problems of CFS and how there is no magic bullet for tx. We have to tx. the underlying causes first.

Didn't know that you also have Lyme. The number of people that have both is something. I have yet to have my western blot testing, due to cost...but my rx. is in hand and I hope to be tested soon.

Enjoy the sunshine before the rain rolls in and hope the feeling a bit better keeps up.

greenwords said...

Just a quick note to say I find d-ribose helpful. Good luck with it!

Anonymous said...

Intersting to read about the trial
of various supplements - kinda of
like hunting for a pebble in a
huge haystack. When I see there
is something approaching universal
perhaps I'll re enter the hunt for
something that truly helps CFS

Georgina said...

Hello Sue,

I was prompted to drop by your blog as I am receiving your Good Reads updates :-)

I tried D-Ribose in combination with L-Carnatine. It really disrupted my sleep - I ended up tired but wired and my sleep meds wouldn't. If you have trouble with insomnia then I would be cautious. I do want to try it again but I've been waiting for that elusive 'stable' phase (just like you!) Happily I do know people that D-Ribose helped but they weren't so wonky in the sleep department.

I do hope that it helps you.

All the best,


Anonymous said...

D-Ribose helped my energy levels and helped me cope mentally with paperwork at work. I feel almost back to normal.

The side effect was waking early in the morning, sometimes as early as 2am and not being able to get back to sleep. This causes side effects which offset the gain in energy levels.

Sue Jackson said...

We've had similar problems with D-ribose. I found I couldn't take it later in the day or it would disrupt my sleep at night. So, when I take it, I only take it first thing in the morning, just 1 dose a day - maybe that would work for you, too.


joe said...

d-ribose has been a life saver for me. i feel well and have hardly no more brainfog. I FEEL CURED after day 2. it works for most so PLEASE try it if you havent

Salford Lad said...

The correct dose for for D-Ribose is 5g 3 times a day. If taken with the same amount of creatine ,it enhances the effect.
In association with Magnesium, Aceyl L-carniteine, COQ10. I have found it effective. Sleep can be a problem, do not take late in evening.

Sue Jackson said...

True - that is the recommended dose, but I was never able to tolerate that much. Each patient needs to find the right dose for him or herself, especially people with ME/CFS who often react over-strongly to medications and supplements.

I discovered the same thing about taking it too late in the day (see comments above).

Thanks for the tips!

Anonymous said...

Melatonin and sleep cycles and sun exposure have something to do with fatigue. Cortisol, blood sugar, thyroid, hormones: all of these things factor in.

As early as you can manage to wake up every morning, expose yourself, especially your head (glands) to the sun. Direct sun is best but even sun through the screen of a window may help. Taking a little melatonin at night may help as well.
Recalibrating the system takes time and persistence. It's taken me a year to give up all grains (except oats and occasionally rice) but my weight fell off within months. It wouldn't budge at all before that. Blood sugar came down and I don't huff and puff climbing stairs. Chest pains have decreased dramatically.

Good luck to everyone!

annkaren74 said...

I realize I'm a little late to this party but I have to say D-Ribose is an absolute no for me. It's effects were far from giving me energy. I crashed so bad that I was afraid I wasn't going to wake up.

Sue Jackson said...

Sorry to hear that! We didn't stick with it, though I still use it from time to time when I've been exercising. That plus a scoop of creatine seem to help avoid crashes.


Anonymous said...

I find D Ribose with Carnitine and B3 & B12 to be excellent. I never slept at night anyway. I have so much energy now. 1 month ago I was bed ridden, Now I can get up for 2 hours a day. After 40 years of ME , It s` a definite improvement. Amazon has most vitamins and Supplements.

Sue Jackson said...

Yes, we get all our supplements through Amazon! Best prices & selection :)

Glad you found something that it helping!