Anyone with Ehlers Danlos and chronic pain flare ups find a solution?
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Poor digestion, bad arthritis flare ups, swollen lymph nodes etc...
Only thing that seem to make a huge instant difference is prednisone but it doesn't seem like a good idea long term.
Already tried thyroid, carrot salad, and cyproheptadine with some ok results but still far from better.Anyone have this?
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@notmcas i would try THC and CBD suppositories. Another thing to try is low dose naltrexone. Both could work very well.
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I have it, although less pain and more hyper mobility poor digestion. Your name says notmcas. A lot of the times EDS is related to MCAS.
I would look into the b vitamins and solve any nutrient deficiencies. I'm still trying to fix this as well.
DAO enzymes helped me
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@Ecstatic_Hamster notmcas was just a quick joke name, I know MCAS is a factor. But DAO enzymes only work before meals? Which b vitamins have worked?
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@notmcas Although I have experienced many to the symptoms that you list, I have never been officially diagnosed with Ehlers Danlos and I have not had genetic testing. I gave up on doctors years ago after several unfortunate experiences.
My digestive tract symptoms, chronic pain, hypermobility, scoliosis, etc. resolved with high dose thiamine hcl (1 gram, 2Xday), magnesium (3100mg/day, divided into 2 doses), niacinamide (100mg, 4Xday), and riboflavin (100mg, 4Xday).
Suggested reading: https://www.hormonesmatter.com/tag/ehlers-danlos-syndrome/ This is a collection of articles; click on each title so that you can also read the Comments.
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@mostlylurking Interesting, any recommendations on sources or how to take them? I tend to get digestive issues from supplements and Ray seems to think that most supplements aren't pure enough. I've had better success mixing with something like orange juice but it's still irritating to the digestive system
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@notmcas There are multiple types of thiamine available. Dr. Chandler Marrs, Dr. Lonsdale, and Elliot Overton all like to recommend TTFD thiamine. I was unable to tolerate TTFD because my glutathione level was very low. I think that the low glutathione was the result of long term high oxidative stress which was the result of mercury toxicity from mercury amalgam fillings placed when I was a child.
I learned from Elliot Overton that thiamine hcl is known to normalize glutathione levels so I stuck with thiamine hcl. I chose to follow Dr. Costantini's protocol because he always used thiamine hcl to treat his Parkinson's Disease patients and at that time (winter of 2020), I had developed a hand tremor and couldn't walk straight (kept bouncing off the walls).
I get my thiamine hcl and other pure powder supplements from purebulk.com. They have a good reputation and I've been pleased with their products. These are pure powders, with no excipients. I just mix them into plain water and drink it down. I know that Ray had concern for supplement purity and in a perfect world I wouldn't take them. But I'm dealing with long term mercury toxicity and it's not just going to spontaneously go away. I've experienced excellent results with these supplements.
Thiamine needs to be taken with water, never with juice (per Dr. Costantini) because the sugar in the juice cancels out the thiamine. It should also be taken 30 minutes away from eating.
I experienced major digestive upheaval in 2020 after taking Bactrim antibiotic which is known to block thiamine function. Ray Peat advised me to take thiamine and magnesium to heal my gut. It worked. I'm still taking it. I started with around 300-350mgs, 2Xday and worked up to 1 gram, 2Xday over a period of 4 months. I never experienced any negative effects from taking thiamine hcl orally.
Another option that you could consider is the sublingual type of thiamine which is absorbed under the tongue and so bypasses the intestine completely. Daphne Brian wrote a good book about it which you may find helpful.
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@mostlylurking Interesting I'll look into this. And you say your other symptoms resolved too like chronic pain? And Ray recommends an amount of mag glycinate then?
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@notmcas some people do well with up to 500mg or even more pregnenolone per day for Ehlers Danlos.
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@notmcas Yes, my other symptoms resolved too. I take 1 gram of thiamine hcl, 2Xday. I also take 3100mg magnesium glycinate (equals 400mg magnesium), divided into 2 doses per day, 100mg niacinamide, 4Xday, 100mg riboflavin, 4Xday. I also take about 100mg pregnenolone, 1Xday, about 35-40mg progesterone/day, 10,000iu D3/day. This is what works for me. I get my calcium from dairy and also ground eggshells.
I think that the magnesium is very important; taking high dose thiamine hcl has vastly improved my tolerance for magnesium. I get my magnesium glycinate from bulksupplements.com .
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@Ecstatic_Hamster I was taking a higher dose of pregnenolone (around 200-225mg/day). However, my cholesterol spiked up and my normally sane endocrinologist threatened me with statins. So I cut my dose of pregnenolone in half and my cholesterol normalized within 6 months.
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@mostlylurking That's a lot of supplements, is the thiamine and magnesium the main ones that you saw benefit from or is it important to take that full stack?
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I have some sort of connective tissue disorder and am currently going very hard trying to fix my thyroid, promising results but to be seen what happens. But in my experience stock, mainly thick home made beef stock, has been the single best thing for me by far. Another and I was surprised by this recently is Vitamin E, I have been ingesting tons of it from food sources and been noticing huge effects instantly.
I think people in this thread may be having the same kinds of responses to changes in health. If you try to 'build yourself up' like with thyroid or something, you'll start doing better but then fall apart soon after. I'm currently going in extremely hard trying to max out basically every nutrient I can think of while eating thyroid and it seems like it may be working.
But does anyone here deal with extremely low amounts of energy and have any kind of solution? I can never really figure out what causes low energy and what helps me raise it occasionally.
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@notmcas I can't tell you what you need to take. I'm not inside your body; you are. All I can do is make suggestions. #1 on the list is to read Ray Peat's articles, hard copies, with pen in hand like you're back in school. That's what I did for at least 4 years, maybe 5. I also downloaded his radio interviews, burned them to CDs and played them continuously; my short term memory was pretty trashed. I did not spend time on the forum.
I've been at this supplement thing in earnest since January of 2015 when I searched out Ray Peat's wisdom via his articles on his website. I've read a lot of them 10+ times. I printed hard copies with 2 column formatting because I couldn't get my eyes to track across a full page, I made notes. I learned the things that Peat suggested for what was ailing me at the time which included: estrogen dominance, hypothyroidism (inadequately treated for years), rheumatoid arthritis (inflammation run amuck), brain fog including memory loss, inability to learn new things (see # of times I read Peat's articles). I was suffering from heavy metal poisoning including lead poisoning and mercury poisoning. I was in big trouble.
So in February of 2015, I looked for and found a really good 80+ year old endocrinologist who was willing to work with me and prescribe desiccated thyroid; he changed the brand from Armour to NP Thyroid and over the course of 9 months doubled my dose I had taken for 10 years from 90mg to 180mg. I got a whole lot better. During this time, I added these supplements that I learned about via Ray Peat's articles: progesterone, pregnenolone, niacinamide, riboflavin, a little magnesium, some
calcium in the form of milk and ground eggshells, and 100mg of thiamine hcl (too low a dose,which I took incorrectly with orange juice). My endo found me intriguing; he said his focus for his thesis was riboflavin and if I wanted to supplement these things it was OK, they wouldn't hurt me. Except for the progesterone because he said it was carcinogenic. I said, "no it's not", and his head almost exploded.I shuffled along for 5 years. Then I got a UTI summer of 2020 and was prescribed Bactrim antibiotic which nearly killed me. I didn't understand why I got so sick but I did understand that I had lactic acidosis really bad and that my oxidative metabolism had stopped working.
In October 2020, I remembered that Haidut had said that thiamine could resolve lactic acidosis. So I tried taking some, 300-350mg with some water around 2:00pm. Within 45 minutes, my body temp went up a full degree to normal for the first time in months, my inflammation cleared, and my brain fog lifted. I was euphoric because I believed I had stumbled upon a major key to my long term illness which indeed I had.
So I went back to studying. Ray Peat had told me via email that I should take thiamine and magnesium to heal my gut; he just didn't mention how much. But he did say that I should keep it below 1500mg but didn't say why. He also said if I had heavy metal poisoning "all bets were off".
I found Dr. Costantini's website several months later. I was trying to learn how much thiamine hcl would be OK for me to take. I had developed a tremor in my right hand and I couldn't walk a straight line. The videos of Dr. Costantini's patients made a really big impression on me. Dr. Costantini's Therapy page had conversion info regarding how much thiamine hcl taken orally equaled to one 100mg injection of thiamine hcl. I decided to follow his protocol.
I increased my thiamine hcl to 1 gram, 2Xday; within 2 days, my entire digestive tract normalized. I could swallow normally. My stomach acid normalized and I craved a steak. So I ate one, no problems. My intestinal function normalized and I could poop normally for the first time in 8 months. It made a really big impression.
So, yeah, I take a lot of supplements because I believe they help me. You may not need all the stuff that I've chosen to take. I've got mercury poisoning. Oh, another thing that I take is 200mcg of selenium because of the mercury load that I carry. I've learned that if you are deficient in selenium you can't convert T4 into T3; so this is probably part of my thyroid problem
I found a post by Elliot Overton recently. I think it's this one, but I could be mistaken. At any rate, somewhere he said that taking a little niacinamide and some riboflavin corrects some things that are also tangled in with what thiamine does. So I consider this confirmation of what I learned from Ray Peat's work that what I'm doing is appropriate for my health problems.
Sorry for the novel length I just wrote. Perhaps it will help someone else.
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@mostlylurking Thanks for the info, I've read through most the articles and listened to him on generative energy and his interviews. I think mold exposure is a factor and very allergic to shots, probably the aluminum in them. I"m just nervous about jumping on a protocol with so many supplements, maybe the thiamine, magnesium, and pregenolone is a good start and add from there. I was just trying to see what's the baseline for the protocol. I think that's a good writeup that will hopefully help anyone else with EDS who searches for this.
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@notmcas you're welcome. I like to try to help people and to share experiences. My own story is somewhat complex so it is hard for me to simply say "take what I'm taking". I think it is really important to try to discern that for yourself as much as possible.
I found Ray Peat's interviews on Politics & Science to be my favorites, mainly because the interviewer was very good and simply let Peat talk most of the time.
Here's a link to the Ray Peat interviews; you can scroll through and see what catches your eye.
https://www.selftestable.com/ray-peat-stuff/sites
Here's a link to search Peat's articles:
https://www.toxinless.com/peat/search Use the search cell that only searches Peat's articles/written work.
Here's a link to search Peat's interviews:
https://bioenergetic.life/I went through many years of being almost universally reactive to all environmental toxins and to almost all food. But I'm not that way anymore. Maybe I'm better because of the thyroid medication, or perhaps it's because my oxidative stress is better now, but I don't know. Thiamine is needed for the immune system to work properly as it is part of the autonomic nervous system.
Yes, mold is a really bad one, especially if you inhale the spores.
I don't think that you should jump on any protocol that you haven't researched yourself and feel comfortable with. I think it is important to take one step at a time and evaluate how your body responds to one supplement. That's what I did. Use the links I included in this post to look into the supplements that I'm taking. If it strikes you that thiamine, magnesium, and pregnenolone are where you are interested in starting, then follow your instincts. But read about each of them first.
Ray Peat wrote a lot about pregnenolone so I think his work is the most important about that topic. Although Peat did recommend thiamine multiple times, I don't believe it was his main focus. I've found Elliot Overton's articles and youtube videos to be very helpful regarding thiamine and also magnesium. I found a really good article about magnesium that I'd like to share with you here.
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@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
I think mold exposure is a factor and very allergic to shots, probably the aluminum in them.
re. shots: it might be the aluminum, but it might also be the mercury in them. Just don't let them stick you with anything. It's just not worth the risk. Except at the dentist's. I did make an exception for the shot before the filling(s) a few weeks ago.
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@notmcas Again thanks for the info, I've looked through a lot of those. I should actually mention this is my girlfriend who's having these issues I'm just looking for her. Are you a woman? It seems like it's almost always women who experience the chronic fatigue, pain, migraines, etc from EDS or similar issues. I'm going to assume that the unopposed estrogen is causing a lot of it since a lot of people improve on testosterone.
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@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
Are you a woman? It seems like it's almost always women who experience the chronic fatigue, pain, migraines, etc from EDS or similar issues. I'm going to assume that the unopposed estrogen is causing a lot of it since a lot of people improve on testosterone.
Yes; I'm female, age 74. Yes I think the unopposed estrogen is a very big problem. Have you and your girlfriend listened to the Ray Peat audio interviews on progesterone? I found them to be enormously helpful. The information provided gave me the backbone to stand up to my endocrinologist when he told me progesterone is carcinogenic (I burned him a CD with these audio shows and handed him printed Peat articles about it). I've found bio-identical progesterone to be a tremendous help. I've been taking it for 9 years. Progest-E is an excellent product. I personally need a pretty high dose. Instructions are provided to guide you through determining your dose.
Politics & Science: Progesterone Part 1
Politics & Science: Progesterone Part 2
Politics & Science: Progesterone Part 3 -
@mostlylurking Well I've wanted her to take progest-e for some time. I use it in small doses as a male and like it a lot. The problem is shes on birth control to not have a period because it was so painful. If I knew cycling progest-e would also prevent it I could convince her. She's afraid that supplimenting progest-e could start the cycle again. Although I thought that at a constant dose daily that it should suppress the cycle just like her progestin? If that were the case she'd just take it now. I'm sure it will help because she feels by far best on a barbiturate which activates the GABA system, so I assume the Glutamate/Gaba balance is really bad along with MCAS causing these random flare ups where everything is inflamed. The flare ups are most common before rain. Carrot salad has helped the digestive pain.
I guess other options are dhea and pregnenolone which she's more open to trying. I've thought about brewers yeast as well for it's nutritional content but I'm afraid of gut irritation or too much estrogen. Shes young and very depressed about the situation, and I don't want her getting too used to barbiturates or prednisone already.
