D-Ribose & low-carb/Keto?

CoconuttyMummy

As I mentioned in my last post, I was recently diagnosed with M.E. & Fibromyalgia (amongst several linked syndromes such as Raynaulds etc). One of the truck-load of supplements and prescribed meds I have to take to reduce symptoms is D-Ribose.

My dosage is: 5g pure D-Ribose powder 2-3x a day.
As 1g D-Ribose = 1g net carbs, that tots-up 10-15g net carbs before any food passes my lips (arrgghh!).

(ctd below...)

CoconuttyMummy

However, im not sure if I should be counting the carbs in D-Ribose after doing a little research on Google. This is my basic understanding:

D-Ribose is technically a 'sugar' but it's used by the body in a completely different way to other sugars: Rather than being burned for fuel like glucose, fructose etc, Ribose's role is to make ATP, the energy currency of the mitochondria. Basically D-Ribose is sent directly to fuel muscle cells, rather than being burned up as simple energy like other carbohydrates.

I read on several web pages that D-Ribose does not affect blood sugar.

My question is:- *Should I be counting my daily dose of 10-15g of pure D-Ribose as 10-15g of net carbs? Or should I omit logging them as they aren't utilised by the body like regular carbs? (Obviously I would still log the calories if this is the case, just not the carbs)*.

What would you do? Thanks for your opinions. X

baconslave

I've heard of it. D-ribose is my next experiment (I'll be ordering it soon) as everything else, including keto itself, has failed me in the chronic-fatigue dept.

It is supposed to not affect blood sugar. But as you know, everything affects people differently. So you are going to have to try it out and see. Just start out not counting it. If it indeed starts to affect your blood sugar, then you will know you will have to count it. It may end up being a balancing act. You're venturing into n=1 territory.

I'm going to go peek around and see what I can find on the matter. If there's anything.

CoconuttyMummy

Thanks Bacon, let me know if you discover anything more - You will understand all the scientific jargon better than me!

I didn't realise you have CFS. Have you looked into Dr. Jacob Teitelbaum's protocol? He gas a website and a book called "From Fatigued to Fantastic". I was just telling Sunny_Bunny about it on my Potassium thread. I've been using his CFS/FMS treatment protocol for a couple of months now (which includes D-Ribose as a must-have supplement) and I've felt a noticeable improvement in all areas, including the chronic fatigue - not a miracle cure but definitely improves symptoms enough to be valuable.

baconslave

I'll be looking more. Haven't had a lot of time yet, but so far the source I read was a summary of d-ribose research which says that it not only doesn't affect blood glucose, but in some cases may lower it. That's just one source though.

I have not been diagnosed with CFS, but I know I have it. I've yet to find a doc who believes it exists. Most just say "depression" and refuse to go farther than that. It is NOT depression. I tried their nonsense. So I'm tired and pissed off at their idiocy, but not depressed. I tried it their way and went through 4 different antidepressants that didn't help and the last gave me symptoms of bipolar disorder. I managed to figure out why I went manic before more harm was done. There was plenty enough and DH won't let me forget it. And ended up with ADD as a door prize after coming off the SSRIs.

I had a terrible case of mono that lasted 6 weeks when I was 19. I never fully recovered. I gained 60lb within just a few months. Always tired. Needing naps, even after sleeping for 9.5 hours, waking tired. Keto and weightloss did enough for me to scrape myself off the couch and develop discipline to regularly exercise. And despite a handful of vitamins (mulit, B's, C, D, K2), all the electrolytes, good probiotics, fish oil, and various supplements, AND coffee, I sleep poorly, I wake tired even if I sleep well (which I almost never do. Falling asleep isn't a problem-staying asleep is.) I wake about 6 or 7 times a night.) I'm tired all day, and I get smacked with waves of fatigue throughout the day. And now I've developed a severe case of chronic dry eye. I actually feel good briefly after I make myself exercise. But that wears off pretty quickly.

So the next step is Teitelbaum's protocol, I guess. More supplements to take so that I have expensive pee.
After that, if none of that works, I give up. I will have actually "tried EVERYTHING" within my power to try, supplement-wise.

ChoiceNotChance

Hey @baconslave - just throwing this out there- have you ever been tested for sleep apnea?

baconslave

No. We have $4000 premiums yearly and then a $7000 deductible. Isn't going to happen any time soon. Every test is out-of-pocket.
I can't take food out of the mouths of my children to pay for a test that may or may not determine anything. And if I did have sleep apnea, the equipment cost would be OOP as well. So I couldn't afford to do anything about it anyway. There's no such thing as affordable health care. Any treatment within my reach, must be within my reach alone for the moment.

I haven't been to see a doctor other than one at a walk-in clinic for a UTI in over 3 years. And they didn't exactly do much for me then either, years ago, except make things worse. Like I said, they don't believe in CFS, like it were the tooth-fairy or something! I'm not the fool I once was. But I AM terribly cynical now. Doctors don't have a great track record where I live or with my family. The best medical care they've received has been through my own research and implementation (and DH's). Doctors here are medication and vaccine dealers. And that's about all they are useful for.

ChoiceNotChance

OUCH- sorry to hear about that high deductible. That sucks. It hardly seems worth paying the premiums...

I agree with your assessment, though. Most doctors just want to write you a prescription. I went to my doc a while back with a sore throat, cough, chest congestion. Dude didn't even look in my throat or listen to my lungs. WTF.

baconslave

ChoiceNotChance wrote: »

OUCH- sorry to hear about that high deductible. That sucks. It hardly seems worth paying the premiums...

I agree with your assessment, though. Most doctors just want to write you a prescription. I went to my doc a while back with a sore throat, cough, chest congestion. Dude didn't even look in my throat or listen to my lungs. WTF.

Yeah. It isn't worth the premiums. But you have to pay it. The insurance is only of any use to: 1)keep us from paying non-insured rates for everything and 2)to assure we are only out $7000 extra dollars should something catastrophic happen (like an extended hospital stay or major surgery.) If we didn't have children, we wouldn't bother with insurance at all. But their health is a priority, so we throw money away every year just in case something really bad happens. The ins DOES pay for one well-visit/check-up per year and vaccines. That is all. The rest is our responsibility until we he the deductible from hell. We are lucky. I've heard of people with $10,000 deductibles. I estimate that will happen to us within the next few years. In the beginning, 8 years ago, we paid $250/month and everything was covered. We just had a $15 co-pay for visits...how much things have changed in such a short time!

In their defense, it's easier to just write a prescrip. And they have little time to spend with each patient. I don't hate doctors, they just aren't educated well despite all the education they pay for. And the system is just fubarred in the extreme overall.

@CoconuttyMummy sorry for the hijack.

CoconuttyMummy

Baconslave, your sleep issues sound exactly the same as mine - I'm always tired so falling asleep isn't a problem but my body will not allow me to go into deep sleep (without heavy sleeping pills, which I had to fight my doctors for months to get - I was so ill with sleep deprivation before they would prescribe me anything strong enough to help). I've tried going without the sleeping pills many times and I always still keep waking up with a jump LITERALLY every 20 minutes. Before the pills I had to nap like that all day and all night and was still exhausted because I wasn't getting any Delta wave (deep) sleep. It causes so many health problems and flares the Fibro & ME symptoms because your body repairs itself in deep sleep mode - without delta wave sleep your body and brain can't function. This kind of sleep disorder is intrinsically linked to syndromes such as CFS/FMS/ME. It's a chicken-or-egg issue, not sure which comes first, the sleep disorder or the syndromes, but they go hand-in-hand and create a vicious cycle of symptoms, triggering each other.

For me, I've found my night-time meds and supplement routine to be key in solving the lack of deep sleep problem, which has a positive knock-on effect on my Fibro/ME symptoms the following day. My pain & fatigue levels are quartered when I get a good, heavy sleep the previous night.

My night-time meds & supplements are:

- Amitriptyline 70mg (about 8pm to start winding down - I take it when I put my little one to bed, but you can take it anytime before bedtime).

- Magnesium Citrate 400mg, Calcium (to help it absorb), HMB, Glycine, L-Glutamine.

- Transdermal Magnesium Chloride Oil or a hot magnesium chloride flakes bath with de-stress essential oils.

- Aromatherapy essential oils ('sleep blends' on pillow and in an electric oil atomiser).

- 'Sleep' CD playing quietly on repeat all night - delta wave sounds to help train the brain.

- (I also sometimes use guided meditation & hypnotherapy CDs to help my brain get in a more relaxed state on the run-up to bedtime, but that's proving harder to keep up as I need complete peace n quiet to do that so I can really concentrate & relax, which is hard with a noisy hubby moving about or my 4 year old calling out. It definitely helps a little when I do get the chance).

- PM Yoga practice (DVD or app) can help relax the body tension that makes it hard to sleep, too. Again, I don't get to do this as often as I'd like but when I do fit it in my body feels much more prepared for sleep.

- Technology off & lights out 30mins to 1hr before your planned sleep-time (this helps more than I'd believed. I used to fall asleep at my laptop, with the TV on low. Now I even cover up the light on my stereo so my body can sense it's night-time & encourage melatonin production.

- Zopiclone 7.5mg (sleeping pill, taken 30mins-1hr before you want to fall asleep. It used to work within 15mins but it takes a little longer to kick in after using it every night for a couple of months. I only wake up 1 or 2 times a night briefly and I'm able to get back to deep sleep with these magic pills!).

- (Baclofen 10mg - muscle relaxant - only if needed ie. during Fibro' flares, restless legs, tense body, muscle spasms/cramps etc).

Together, this night-time protocol helps big-time. X

CoconuttyMummy

Just thought, I may as well tell you my daytime meds/supps too!

- 'Energy Revitalization System' powder by Enzymatic Therapy (key supplement in Dr. Jacob Teitelbaum's Fatigued To Fantastic protocol) - 1 scoop as soon as I wake.

- D-Ribose (pure, good quality- another key player) - 5g 2-3x a day.

- Co Q10, L-Carnitine, NAC, B-50 Complex, Methyl B-12, MSM, Selenium, Buffered C, Super Strength Omega 3, Vitamin D3, ALA, Potassium, Iron, Optibac Probiotics, Magnesium Citrate, Taurine, HMB, Riboflavin (B-2), Niacin (no-flush B-3), Lugol's Iodine drops (worked-up to 75mg elemental iodine per day; started at 50mg; increasing slowly until I reach 100mg over several months).
- (I also take high strength garlic, hyaluronic acid with bio cell collagen and biotin for hair loss & skin issues due to poor health).

- Baclofen 10mg (muscle relaxant) - as-and-when needed, up to 3x a day, for muscle cramps/spasms, body aches, burning in soft tissues, muscle tension etc. These also help me have a more relaxed mood in general if I'm stressing-out at the nasty symptoms of FMS/CFS/ME.

It's a lot to take (and expensive) but it's this or lying on the settee all day with pain & exhaustion. I can't put a price on my health. I'm 'only' 34 yrs old, with a 4 yr old son, husband & home to look after, as well as a life to lead myself, so I do everything in my power to assist my wrecked body so I can get a few chores done etc. It's not a magic cure - I'm still extremely limited with how far I can push my body; I have to pace myself & rest often and usually by tea-time I've hit the wall & my hubby has to take over making dinner & be head-parent for the evening, but it's a gazillion times better than pre-meds/supps, when I was no use to anyone (least of all myself!).

Exercise is still a problem, though. I love weight-training but my body can't recover from a decent lifting session yet - it takes several days to recover after a good workout, totally wipes me out & causes intense muscle burning, fatigue, cramps & spasms for days after. It seems my muscles can't repair quickly enough after being worked. I'm not giving in though, give me a couple of months and I'll figure out a way I can build muscle without having to cancel life for the rest of the week! Xxx

CoconuttyMummy

P.s. Check out Adrenal Fatigue advice/supplements too. I was under a lot of stress for years prior to contracting CFS/FMS/ME. I didn't realise how damaging it could be to the body. I took bovine Adrenal Gland supplements for a couple of months to help my adrenals repair to balance Cortisol levels.

Many of the symptoms of Adrenal Fatigue are similar to those of CFS, plus a lot of sufferers have both issues anyway. It's just another sign of your body being really run-down. It might be something else to research. X

baconslave

Awesome info! I'm hoping others who suffer see this and can benefit from it.

My coQ10, d-rib, and l-carnitine and the Teitelbaum sleep blend will be here this evening. I'll start with those to see if I can get my body to start cooperating.
And you're right about the adrenals. The more I read, the more I'm thinking I have adrenal issues. We shall see. I'm running out of vit C, D3 and the Bs so I'll look into adrenal support supps to order.

I've been having a resurgence of the fatigue since about 4 mo into this WOE. It's become unbearable recently because I have developed corneal erosion and severe chronic dry eye which makes sleep even more elusive. (Corneal erosion is a weak attachment of the cornea to the eye so that when the eye is dry it adheres to the eyelid. So when my eyes move in my sleep, it rips the cornea from my eyeball. VERY painful.) So I'm struggling with that stress and even less sleep...I just can't cope. Thankfully, I finally got an eye appt yesterday, so hopefully my corneas will heal enough by friday so I can get tear duct drainage plugs and Restasis (urges your eyes to make better/more tears). Unfortunately, once you have corneal erosion, your cornea bonds are always weak, so if I get bad dry eye again, it will happen again. There's nothing quite like being stabbed in both eyes while asleep. Ugh.

I obviously have zero room to whinge over my petty issues compared to what you have to deal with. I know they say it sometimes takes a year or more to see the full benefits. I DO sincerely hope you will keep seeing improvements.
You've probably read this. I wish everyone would.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

And maybe I needed to reread it to realize how far I've come from where I was.

CoconuttyMummy

Ah, Baconslave, thanks so much for appreciating the info. Took me forever to write, what with the Rheumatism & Reynaulds syndrome in my stupid hands & fingers and the brain-fog, but I want to offer any help I can to anyone suffering with my symptoms. I know how debilitating it all can be. At least with my current treatment protocol I'm able to manage the symptoms with a much better quality of life than pre-treatment.

I'm so sorry to hear if your corneal erosion. It sounds very painful. You have every right to whinge along with me. Nobody deserves to suffer. I hope your eye apptmnt goes well and they can offer you the treatment you need for relief.

Btw, I just thought - A cup of Licorice Root Tea a day helps your adrenals (and it has gastro benefits too, which helps my gastric ulcers & acid reflux as an aside). Limit it to 1 cup, though, as it can increase blood pressure a little, in larger quantities. I, like many CFS sufferers, have low blood pressure, so it's a non-issue for me, but frankly I couldn't bring myself to drink more than 1 cup of the stuff - it's got a really strong, naturally sweet taste. I'm not going to lie, I don't enjoy the taste much, but I force it down for its benefits.

Oh, and just to mention again, the Energy Revitalization System powder is possibly the most important daytime supplement in the whole program - closely followed by D-Ribose. The formula was designed by Dr Jacob Teitelbaum (apparently his side of the profits goes to charity) to contain peak effective doses of countless essential nutrients indicated for CFS. There's way more in his cocktail, at highly effective doses, than I've found in any other supplement, and it's all designed entirely for CFS sufferers (who have increased needs for many nutrients). I think he said it's the equivalent of 32 pills. I know it's expensive but it gives complete peace of mind that you have all your bases covered. There's no way I could ingest the right quantity of all of those nutrients every day without it. (N/A btw - just a happy customer!).

CoconuttyMummy

The spoon theory is a great illustration of how CFS/Fibro-fatigue etc affects our lives, agreed. X