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Constipation Etc.
@puddleduck Thank you for the links puddleduck. I apologize for the confusion though on what I must have implied about biotin. I didn't mean to communicate that I thought biotin was key in what is going on with me, though maybe it is. However, I think the keys for me and many are some of the other Bs namely B1. I was just listing all the Bs I'm taking which includes biotin. I don't know for sure what to take though and I am just experimenting at this point with them. I have been sleeping longer and getting fewer headaches. I *think* it must be one, some, or all of the Bs I'm taking as supplements that are helping. I tried to increase them with food sources but didn't get anywhere though I'm going to still eat those foods until hopefully the supplements catch me up.
I'll read those links. There is certainly more I can still learn about this!
@puddleduck. I forgot to clarify something else. I didn't get bad reactions from the sun until after I started taking vitamin A supplements. A couple of years after taking A supps I started getting rashes after sun exposure then this past summer (about 9 months after stopping vitamin A supplements) I got really fatigued, insomnia got worse and headaches increased. Seems like this last set of worsening symptoms were more indicative of a very profound thiamin deficiency. Though I think everything I am experiencing now is related to the vitamin A supplements I took from January 2015 to September 2108.
Oh my gosh, this is the perfect example of my level of brain fatigue... 😶😐 @romaine and @rachel I swear I know you’re two different people! LOL. 🤣 It’s the green avatar and the Rs that got me mixed up. Apologies to both of you, but my last two comments were (mostly) meant to be directed to @rachel 😂 Except for that bit about the vitamin D, since you’re the one who said you might test that out, Romaine. 😝 Oh dear, I’m so sorry I feel awful. I remember you gave me some information about C60, Romaine, but I haven’t read a progress thread from you. I’ve read Rachel’s progress log, though, which is why I knew she had hemochromatosis.
Anyway... ☺️ There are a few more links regarding biotin that I’ve posted in this thread, if either of you are interested (it affects more than the skin, apparently they’re seeing it improve myelin in MS): https://ggenereux.blog/discussion/topic/repairing-white-matter-of-the-brain/z
Also in that thread, I link to Dr. Costantini’s work on thiamin (he uses high dose thiamin HCL for Parkinson’s patients). I thought I’d try it out on my CFS. Basically, for over a month now, I’ve been increasing my dose of thiamin HCL. I got to 3500 mg (yes, 3.5 grams, that is not a typo 😂) and then quit for a week because I got scared 😆 (my period was awful and I wondered if I went too high on the thiamin).
When I stopped it, the POTS aspect of my CFS really flared up (I had to stay mostly horizontal for that time). Dr. Derrick Lonsdale says POTS is closely linked to thiamin deficiency.
Buuuut I’m on day three of 3000 mg again, and I think that’s the sweet spot for me because I’ve been getting these “soothing/cooling/water-flowing” sensations in my gut and brain (normally my head has uncomfortable “heat/crawling/pressure” sensations pretty much constantly). This happened before when I reached that amount.
Not sure how to explain those sensations, but feeling hopeful they’re a good sign!
Crazy what a profoundly negative effect vitamin A supplementation can have, Romaine! And yeah, if the body is burning through thiamin to get rid of the vitamin A, it all makes perfect sense. I still am a bit confused about why the detox reaction is so strong in some people (like, why Rachel is so sensitive to the thiamin), but maybe it has to do with multiple deficiencies all contributing to weakness in other areas (if the gut is weakened by multiple deficiencies it can’t handle the vitamin A leaving the body due to the thiamin, OR maybe in some cases thiamin is causing oxalate dumping—I read about that on the TLO facebook group).
About the oxalate dumping thing, my kidneys hurt super bad one day after ramping up the thiamin. The next day I had that “soothing/cooling” sensation in my kidneys as well. So who knows what that was (I haven’t eaten many high oxalate foods for 6 years, unintentionally).
Oh also Romaine, I know I saw multiple studies about B2 and migraines the other day... Here are some of them:
- https://pubmed.ncbi.nlm.nih.gov/26780280-supplementation-with-riboflavin-vitamin-b2-for-migraine-prophylaxis-in-adults-and-children-a-review/
- https://www.ncbi.nlm.nih.gov/pubmed
But I think you’re right that all the vitamins work synergistically, and that food alone isn’t always enough to correct a deficiency.
Yep, good old brain fog! Don't worry. Thanks for the previous links.
I'm not sure what the source of my sun sensitivity is. My mum is the same and my sister developed it in her late teens. I've often puzzled over how I could have become so VA toxic at such a young age - if indeed that was the case. I know my mum was given CLO at school in the post war years. The thing is I was a pretty healthy child. I had the usual illnesses (mumps, chickenpox etc) but I wasn't often off school. I wasn't one of those kids that was always getting colds and sorethroats etc. No allergies or ezcema.
I struggled since my late teens with eating disorders and mood problems so I suspect poor nurishment and psychiatric drugs that impeded my detox pathways have been a big part of the picture for me. It wasn't until I actually developed CFS and had a severe worsening a few years later that I got into alternative healing modalities and dietary measures that likely created a sharp increase in my VA intake and I was already pretty ill at that point. So I see that as exacerbating things but not necessarily causing them.
I find it frustrating not being able to track things back more definitively as I would like to know whether VA toxicity is my main problem or a compounding factor.
I am hoping the biotin supplementation makes a noticable difference. If I can only improve my gut then I would be able to better address other possible deficiencies (I suspect low molybdemun). At the moment I have held off doing testing because I have to be able to tolerate any recommended supplements which I can't right now. I've been down this path before where I've spent loads on testing only to be unable to take the recommended supplements. That's my main problem with thiamine. I can only take it once every 5 - 7 days which is not really frequent enough. I think more would really help. I take high dose benfothiamine but would like to take allithiamine. I've tried the allithiamine and get a headache from it which suggests to me that it is doing something that the benfothianime isn't (I've read that the allithiamine crosses the blood brain barrier whereas the benfo doesn't) but I would need to take little and often which my gut won't permit. It's really frustrating - I'm holding off the worst of the deficiency symptoms but not really getting enough of it in me for real progress.
It's interesting about your POTS. We have so much in common! I'm glad the thiamine is helping here. I got mine under control using salt, tilting my bed and using a heart rate monitor. I think being mostly bed bound for a couple of years was a major factor for me and I used the HR monitor to gradually more to a more sitting position and then more upright. Standing regularly, once I was able to helped as well. Since I've had my somewhat erratic thiamine supplementation in place it has improved more and I have been able to decrease the amount of salt I use. If find that if my CFS worsens and I have to rest more lying down then that in itself worsens my POTS. Then trying to do more again is exhausting because my racing heart. It's a vicious circle.
@rachel How interesting you, @romaine (she mentioned this in another thread), and I all were severely restricting calories at one point (either ‘cause of EDs or dieting). I’d love to know how common that is amongst people with CFS.
Due to a study I read, I got the idea that people who have been restricting food are more vulnerable to toxicity in their brains than the average person, because the lack of nourishment breaks down the systems that are in place to protect the brain above every other part of the body. Basically the study explained how high lean body mass combined with high transthyretin levels both have a protective effect on the brain, which might explain why some people get inflammation practically everywhere else in their body before it gets to their brain (whereas I got it in my brain first—I think this might partly be due to having such low body fat for much of my life as well).
We do have such similar experiences! I had mood issues as well, but luckily never went on many meds for them (except lithium for a short time). I took EMPower+ (has vitamin A), Cod Liver Oil, and “healthy foods” (like liver and sweet potato) instead lol. 😆 But I was consuming extra vitamin A before I got sick anyway, and had an extremely high beta carotene intake as a child (even though I was healthy and didn’t have allergies either).
Another factor for me was likely glyphosate exposure, as I grew up on a commercial grain farm. When Dr. Smith posted something about glyphosate on his network, I remembered that I suddenly “came down with” CFS and clinical depression around harvest season, just as the spraying was going to stop for winter... It made me think that all of this has an explanation, it wasn’t a coincidence, just layers of toxicity and a point where the body couldn’t cope.
There are detectable levels of glyphosate in so many foods now, and it’s been in use since the 1970s.
Yeah your sunlight sensitivity history makes me curious, too. (As a child, I spent an enormous amount of time in the sun, and I tanned easily and burnt rarely, so I figure the vitamin D I got as a result must’ve been protective.) And your question about if vitamin A toxicity is the primary cause, or just a part of what’s going on, is something I wonder as well. (The endocrine system is involved, too, but again, does vitamin A cause those problems or does the hormonal imbalance raise the vitamin A leveles?)
What kinds of fats did you eat as a kid? My Mom was a health nut, so I wasn’t given butter/dairy, processed oils, or margarine (she made us kids take “Udo’s Oils,” and we had “soya lecithin” for our bread if we wanted it). So overall I was on an extremely low fat diet as a kid. I wonder if that is something that improved my sun tolerance. (I’m not sure it was the best thing since some fats are essential, but it may have been helpful not to have loads of hydrogenated fats, especially as fat increases beta carotene absorption.)
Oh right! Rachel, I have been reading pubmed because on Dr. Smith’s network everyone was talking about “the bean protocol” by a nutritionist named Karen Hurd (here’s someone who improved her health using it and who explains what it is: https://www.youtube.com/watch?v=TmkcdgWplag).
Anyway, Karen Hurd basically says that the fibre in beans removes bile from the digestive tract (otherwise it gets recycled), which means that it is removing fat soluble waste products (like VA I wonder?) and toxins from the body: https://www.youtube.com/watch?v=bKohKjwfyTo
On pubmed, it mentioned oats being good at doing that, as well! I also read that the fibre in beans lowers the absorption and bioavailability of vitamin A,* which makes me wonder if the lutein content of oats isn’t such a big deal when fibre is present (I haven’t confirmed that for oats, I’m not sure how it differs from beans). But I thought you might find that interesting!
Oh also: beans are SUPER high in molybdenum—so another bonus.
Yes, I think headaches are a good sign, too (I have gotten some since starting the thiamin HCL, which is unusal for me). But ugg, it’s extremely frustrating that your tolerance for the allithiamine is so low. I want to know why that is, because it seems common for people with CFS (and fibromyalgia too). But yeah, maybe an additional deficiency problem here, or an increase in the detox... Could be both, I guess. How to make the detox easier and more gentle, is the million dollar question. Your gut seems like the biggest barrier at the moment for you.
I’m going to try upping my beans and meat protein intake as much as I can and see if that changes anything. Right now I’m not sleeping well, and getting more constipation for some reason (likely detox). We’ll see if the beans can help. So far, I’m just getting supper gassy lol. 😆 But I’ll let you know.
I’m glad that even though you can’t take much thiamin yet, that it has actually allowed you to lower your salt intake. That’s pretty cool! I’m also glad you’ve good results with the bed tilting and standing! I just have a mattress the moment, but I will think about that whenever I buy a bed frame and will look for something that’s easily tilt-able. A vicious circle indeed! That’s why this thing is so difficult to figure out—there are so many things at play, and if even one piece falls apart, it messes up the rest.
*ETA: Here’s the source about beans lowering VA absorption/bioavailability: https://pubmed.ncbi.nlm.nih.gov/30920145-the-presence-of-pulses-within-a-meal-can-alter-fat-soluble-vitamin-bioavailability/
@puddleduck That is interesting about the calorie restricting. My CFS was gradual onset and didn't follow an obvious viral illness. I did have some travel vaccines in the 6 months before so that may have been a factor. I was getting well and was more weight stable when it started but I think it was propably a perfect storm type of scenario and something just tipped me over the edge.
It's interesting what you said about brain toxicity because I do believe that is a problem for me. My typical detox reaction is a headache. I say detox, but I think it would be more accurate to say tox. I think that "detox" things mobilise toxins that I can't deal with and I get a stonking headache as a result. Along with this I turn into Hyde of Jeckyll and Hyde. I get anxious, bad tempered, my mood plummets and I'm pretty horrible to be around. I feel like I'm taken over. It's all head and mood / emotional stuff. My energy drops as well. My CRP on blood tests is always low which puzzles me. Does CRP pick up inflammation in the brain?
As well as the starving myself from my late teens onwards, I was a skinny child and did a lot of sport so never much in the way of body fat.
I was on a variety of antidepressants, mostly venlafaxine (effexor) and a high dose for many years. It was nasty to withdraw from too. It took me about 3 years and I had to do it painfully slowly. I also took antipsychotics in low doses for anxiety. Not good for the detox systems in the liver. I was also given carbomazapine (tegretol) for a while as a mood stabiliser and that is nasty stuff. Add a few overdoses into the mix of various drugs and I can see how my ability to detox became pretty compromised. I suspect genetically it wasn't that great to start with so was probably pretty susceptible to damage from these things.
I don't think my endocrine system has ever been great. I had painful periods right from the start. Not every month but some had me in so much pain I didn't know what to do with myself. This has got worse as I've got older and my health has declined. My mood is affected pre and post cycle and I get a dip at ovulation so I often feel ruled by my hormones.
I had a pretty good diet as a kid. Mostly home cooked meals. I remember my mum had a cup of dripping in the fridge so she must have used that and we had butter not margarine. Full fat milk. There would also have been vegetable oil, probably sunflower in the 1970's. Then came along the staturated fat is bad brigade and my mum trying to do the right thing switched to margarine, semi and skimmed milk etc. The beef dripping disappeared. This change was likely sometime around 10 - 13 years of age for me. Still compared to what people eat now, I think it was a pretty good diet.
It was one of bludika's posts on here that put me onto Karen Hurd and beans. I've been concerned for a while that I'm likely just recycling toxic bile and I thought it was worth a go. I've been having them for nearly 2 weeks now and although I have some gut pain it is not escalating in the way that usually happens with problem foods and I'm hopeful that I will be able to keep them in. I have struggled with bloating and wind but am using charcoal to help with that. I don't know if you've tried that for the bean induced gas. It seems to be easing a little now so I hope that it will resolve itself with time. That's an interesting thought about oats (the soluble fibre maybe binding to the leutin). I had taken them out of my diet but have added a small amount back in. It (beans and oats) is definitely helping with my BM's which is a relief.
If allithiamine does cross the blood brain barrier and I have brain inflammation then maybe that is why I react to it so strongly. It would help if I could split the capsules and gradually build up a daily dose but I rely on a bigger once a week dose at the moment. Maybe the beans and biotin will help my gut and then I will better tolerate the thiamine. Would be nice.
There are so many things that I can see as contributing towards me becoming VA toxic and having poor detox but I am puzzled about things that appear to have predated those like the sun sensitivity. I do wonder if I was becoming toxic even at a young age but that my growth kept it from manifesting in any major way until I was adult. I wonder if I was affected by childhood vaccines.
I'm doing some homeopathic detox therapy. I struggle with the concept of homeopathy but decided to give it a whirl. I feel so hamstrung but my gut problems which stop me using many potentially helpful supplements and foods. Maybe this will help.
Thanks for the links, I shall have a watch of the youtube ones later.
It's nearly a year for me now and 6 months since I updated my log. I'm planning on doing that in another week or so, not that there is much to add.
That's interesting about growing up on a farm. I can see how that could have been a factor for you. I seem to remember Dr Myhill saying that she sees a lot of farmers with health problems due to the chemicals they are exposed to. I've always lived in towns so although I will have had the usual exposure from foods, I don't think I've had anything on top of that.
I think a big problem with chronic illnesses like CFS is once you energy gets so low, your body can't keep up with even regular housekeeping jobs as it were let alone tackle additional jobs and you just get worse. It is so hard to get out of this situation. Still people do recover and hopefully we are on the right track.
I am new on here and don't know where to start but I too grew up on a farm (UK!)
@rachel I had just gained a bit of weight before I got “sick” (it wasn’t viral either) as well (going from super skinny teen, to a skinny teen who could do push-ups lol—I started working out more to get better at ballet 😝). But I guess the weight gain wasn’t enough to protect us from the “tipping point.”
It’s interesting to read your reflections and musings, as well as to see the similarities and differences. I also was a skinny child, who grew into a skinny teen with extremely bad period pain and PMS as well. I am so sorry you have it still! 😕 It’s horrible to deal with that every month.
And the “tox” symptoms you get as well... I’m sorry that’s how your brain and body are reacting. Mood issues are the WORST. 😫 Does it happen often? That makes everything so, so, SO difficult... I can deal with fatigue a lot easier than mood issues. A few of my past mood problems came up for me for just a short time earlier in the detox (and later, too, I had a manic episode from insomnia, which was a bit embarrassing—oh dear—but luckily it was a simple fix 😆), and it reminded me how absolutely AWFUL it was to feel no control over your own thoughts and emotions—Clinical Depression is such a frightening illness. ☹️ I really feel for people suffering in that way.
You have been through a lot with those medications and the withdrawals, wow! Mad respect to you for making it through all of that. I’ve heard of how tough it can be to get off of psych meds... Sounds terrible. I’m sorry for the damage that was done.
Neat that you’re trying the homeopathy. I haven’t tried it, but I don’t really get the hate towards it since it seems absolutely harmless (although yeah, I do struggle with the concept a bit 😝). My parents and sister swear by it, though! It makes sense that it would be easier for your digestive system to tolerate. I hope it results in some positive change for you!
About the brain inflammation stuff, Jarred Younger researches it in CFS/ME and Fibromyalgia patients:
He says there can be inflammation in the brain that isn’t detectable with regular blood tests (so I assume that includes CRP, but I don’t know). He came up with a way to identify the inflammation using thermometry (I don’t fully understand it, but it has something to do with elevated lactic acid levels in the brain, too).
”I think a big problem with chronic illnesses like CFS is once you energy gets so low, your body can't keep up with even regular housekeeping jobs as it were let alone tackle additional jobs and you just get worse. It is so hard to get out of this situation. Still people do recover and hopefully we are on the right track.”
YES, 100% ^ That is the struggle. I’ve just found out that my ferritin is super low (the same level it was when I first got CFS symptoms 😵), so I figure that might be responsible for the POTS stuff going on lately... Hopefully I can bring those levels up quickly (fingers crossed my doctor will let me have injections or an IV infusion) and make it easier for my body to keep up with everything.
Oh one more thing about the beans—apparently taking them with fat can increase flatulence. You may have already come across that, though!
I need to update my log, too. Despite the setbacks, there have been improvements as well.
Quote from Adrienne on March 7, 2020, 11:30 amI am new on here and don't know where to start but I too grew up on a farm (UK!)
Hello @adrienne ! 😁
Are you the gal I met on Facebook who has trouble tolerating thiamin? Either way, welcome here! 🙂 It’s cool to meet another farmer’s kid.
In the “Progress Reports” category, whoever feels like it can make a log to record how things are progressing with the diet. Rachael’s log is here: https://ggenereux.blog/discussion/topic/rachels-log/?part=1
I haven’t updated mine in a long time... 😝