I needed to disable self sign-ups because I’ve been getting too many spam-type accounts. Thanks.
Constipation Etc.
Hey @puddleduck , did you ever get to try D-ribose? I read on reddit that it helped someone who had a lot of muscle knots, which I struggle with right now. But then they stopped needing it once they increased their thyroid meds.
@leap7 hey leap! 🙂 Yeah, I did try it for a short time—then I saw this and it kinda scared me away from it so I stopped:
https://www.reddit.com/r/cfs/comments/frv2us/dribose_warning/ (quoted below)
- * - * - * -
vanilla-candle on reddit says:
Hi everyone! I want to make you all aware of something I've learned since it's related a supplement many ME/CFS patients take.
I had good results last month from a combination of pacing and D-ribose. However, I stopped taking it when I found some articles linking it to Alzheimer's/dementia:
https://www.ncbi.nlm.nih.gov/pubmed/31933261
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4741441/
https://onlinelibrary.wiley.com/doi/full/10.1111/acel.12355
There's also a reference to this concern in a study (about ME/CFS, unlike the ones above) summarized on Heath Rising: https://www.healthrising.org/blog/2015/05/26/mitochondrial-depletion-could-underly-energy-problems-in-chronic-fatigue-syndrome/
I messaged my doctor, who isn't a CFS specialist but treats a lot of CFS patients, and she said that she think D-ribose's effect on glycation is a legitimate concern and recommended NAC and ubiquinol instead. I've switched to ubiquinol and am feeling better than I did when I went downhill some after stopping D-ribose. My husband, who is a medical student, agrees that it doesn't sound great after looking at some studies, although he said there are other studies that show conflicting information. I've decided that it's a significant enough risk that I can't continue taking it, and I want to make other patients aware so those of you who are taking it or are interested in it can make an informed choice. I wish this information was more available because it's so often recommended to us.
- * - * - * -
I didn’t notice any symptom changes while I was taking it, but I was feeling pretty unwell in general at that time.
I do take ubiquinol, which apparently improves muscle strength... Not sure about the knot issue though! 😕
I have never really had much muscle or joint pain the way most people with CFS/ME do, fortunately, which always confused me... But since listening to Dr. Smith, I wonder if it is because I had a fairly low-calcium diet (dairy-free) most of my childhood and some of my adulthood also? Someone I know with Fibromyalgia symptoms ate a dairy-heavy diet their whole life, and struggles a lot with joint and muscle pain.
From what I understand, too much vitamin A and D can push excess calcium into the soft tissue:
https://www.health.harvard.edu/womens-health/calcium-beyond-the-bones
So I don’t have proof that is what is going on in CFS/ME or Fibromyalgia, but it is something I’m curious about and want to research a bit more at some point.
I hope the muscle knot issue improves for you before too long. 🤞It is fascinating that thyroid meds improved it for that reddit user!
@puddleduck is Dr.Smith using B1 supplements with his CFS/adrenal fatigue clients? B1 deficiency has basically the same symtpoms as chronic fatigue/adrenal fatigue.
"The many signs of thiamine deficiency are GERD [gastrointestinal esophageal reflux disease], bloating, constipation, delayed gastric emptying, gastroparesis, visceral hypersensitivity, undigested food in stools due to lack of pancreatic enzymes from low stomach acid, gut pain, dizziness, POTS [postural orthostatic tachycardia syndrome] & visual disturbances, low/unsteady blood pressure, tachycardia, central fatigue or systemic fatigue, fibromyalgia, chronic fatigue syndrome, carbohydrate/alcohol intolerance, neuropathy/pain tingling, poor temperature regulation, insomnia, low/high appetite, inability to gain weight, Raynaud's/poor circulation, EMF/light sensitivity, brain-fog/anxiety, breathlessness or air hunger, sleep apnea, etc.)"
This is also very interesting, because it is exactly my case. Bodybuidling diet heavy in white rice for years and ended up with the same symptoms basically..
"Case Study 1. Male mid-twenties with a Medical history of {Neuropathy, Severe Constipation (once every 2-3 weeks), GERD & constant bloating, Severely underweight 116 pounds [53kg] at 6 feet tall and inability to gain weight, Unexplained low blood pressure, Autoimmune issues, Extreme fatigue, dizziness, breathlessness, and low blood pressure}. This client has had a very high and long consumption of white rice as a staple in his diet. And he has his Trigger being hospitalized 10 years prior. He tried multiple diets, even a strict PKD Carnivore diet for around 6 months, which helped with autoimmunity but not most of the other symptoms. He saw Elliot’s videos and got in contact with him. As he looked at it, he had this individual take TTFD (bioavailable thiamine titrating up to 150mg a day), high dose B complex, vitamin C, and magnesium malate."
"After an 8-week follow-up after one day, daily bowel movements. GERD, bloating, and indigestion almost disappeared after a few weeks. Gained 17.63 pounds (8kg) for the first time in nearly 10 years. Enjoys working out and is building muscle rapidly. Fatigue improved greatly, with no daytime sleeplessness. Overall immune symptomatic improvement in a short time frame. This all changed with just the suggestions of TTFD Thiamine with the co-factors listed above. Just another example of how some simple changes can drastically alter someone’s life."
"Case Study 2 Male mid-twenties with a Medical History of {Severe fatigue, and mental sluggishness, depression (feeling dissociated from the body), Chronically cold, and poor circulation, Chronic burping, and bloating, poor gastric motility (explaining that it felt like a rock was in his stomach) & constipation/loose stools, Terrible recovery from exercise, Previous neuropathy, palpitations (cardio abnormalities) and twitching."
"History continued: Long consumption of white rice/bodybuilder diet & alcohol during university. Antibiotics & infection trigger. Lost tolerance to carbs, coffee, and alcohol. Multiple variations of keto/carnivore for 18 months with some improvement, but still struggling."
"Therapy Worked up to 500mg TTFD Thiamine w/ Magnesium malate (he got worse initially, then got better, as this fluctuates due to increasing metabolic machinery to adapt to thiamine levels rising so titrate gently). With every subsequent increase in the dose, his symptoms got worse initially then better. Body heat increased like a furnace. Periods of feeling euphoric, better concentration, and energy. Bloating, burping, and digestive system made major improvements. Sometimes it can take 6-8 months to recover the machinery necessary to restore health from chronic thiamine deficiency."
Here you have videos from a guy who knows more about B1 than most people..
https://www.youtube.com/c/EONutrition
Elliot has done some really interesting stuff on B1. I’ve email chatted to him about vA toxicity. B1 reacts with aldehydes. VA toxicity depletes B1 as does excessive alcohol - retinaldehyde & acetaldehyde. All interconnected. Lots of ways to deplete B1 but I think that vA toxicity is a significant & under appreciated way. Therefore high doses of B1 should help vA toxicity (retinaldehyde form). This is what I said to Elliot (from EO nutrition). Work in progress 🤣
I have a theory that vA toxicity is a necessary but not sufficient pre requisite to CFS/ME. This theory is built on only N=2 so a theory is what it is. Both my family members with CFS/ME had inadvertently poisoned themselves with vA supplements before developing other symptoms. This seemed to be at the base of the ill health pyramid with layers of stress & other things on top of that. The vA toxicity imo sets the scene for all sorts of knock on deficiencies & disrupted cycles in the body. The sulphur cycle is an important one I think. B1 deficiency is a key problem too. I’m trying to apply this theory to help family members.
@jaj Stress, alcohol, coffee, sugars/carbs they all deplete B1 fast. So it makes sense that most people run low on B1, become vit A toxic etc.. Will see how B1 will work for me. I would like to try TTFD form, but it is not available here. So for now I am taking benfotiamin + some hydrochloride and I will try to limit sugar, white rice intake and also keep stress low..
@jiri hey great case studies! Thanks for sharing them. 🙂
Have you been supplementing with thiamine? If so, how have you found it?
Dr. Smith focuses more on the mineral side of things, although that may have been because I was already taking B1 before my consult with him since I have been experimenting with it since February with good results. Have actually been able to reduce my dose of B1 since working with Dr. Smith, even though I eat refined carbs fairly often, which surprised me.
@puddleduck that's good if you take it. I think all people with CFS/adrenal fatigue or whatever have B1 deficiency.. Yes I take benfotiamin + hydrochloride version.. It takes months of taking higher doses to saturate the body so will see..
@puddleduck Thanks for sharing! I won't be taking the d-ribose then. This supplement thing is so tricky.
And yes, it's interesting that thyroid meds changed their muscle knots. This is their post:
"I have had really good luck with a supplement called d-ribose. I know, I know, it's just a sugar! But it really worked for me. I took 5g/day in a glass of milk. I had severe hypotyroidism, and because my metabolism was basically fucked on a cellular level, I got muscle knots everywhere. Like, knots in my face, from smiling. The ribose really helped with that until my thyroid meds got adjusted properly and it stopped happening.
I also have a device called the "back buddy"-- It's an s-shaped bar with little knobs on it that helps you hit the trigger points. It's awesome."