Anyone with Ehlers Danlos and chronic pain flare ups find a solution?

Ecstatic_Hamster

@notmcas some people do well with up to 500mg or even more pregnenolone per day for Ehlers Danlos.

@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 .

@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.

notmcas

@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?

Granbien

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.

@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.

notmcas

@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.

@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.

@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.

notmcas

@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.

@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

notmcas

@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.

@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

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.

The birth control (pills? IUD?) is exacerbating the problem. Please listen to the progesterone audio shows.

Yes, a constant daily dose of progesterone will stop cycling; the body equates it to being pregnant.

Is she taking birth control pills that include estrogen + progestin? Progestin (patented synthetic "progestin") is estrogenic. Estrogen is an abortifacient. Yes, birth control pills are abortifacients.

Estrogen is stored in the fat cells. When you first start taking progesterone, the stored estrogen will come out of storage and cause some worsening of symptoms for a little while until the liver can successfully detox the estrogen out of the body via the bowel. Good liver function and good bowel function are very important because constipation can result in the estrogen getting reabsorbed through the gut wall.

For your consideration, about gaba and thiamine deficiency:
https://www.cambridge.org/core/journals/british-journal-of-nutrition/article/brain-glutamate-and-aminobutyrate-gaba-metabolism-in-thiamindeficient-rats/81D4E736E723E588A8E8BD8CA0BADFE6
also:
https://www.sciencedirect.com/science/article/pii/S0304394016300593

I think that high estrogen results in high inflammation/oxidative stress which would use up more thiamine so it is possible that some thiamine supplementation could be helpful. Although I believe that Ray Peat would agree with me about estrogen increasing inflammation and oxidative stress, this is a difficult topic to research because of the power of the estrogen industry.

https://www.hormonesmatter.com/depression-anxiety-chronically-hypoxic-brain/

I am not a doctor and this is not medical advice.

@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

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.

It is my understanding that a little too much dhea taken will turn into estrogen. It is much safer to simply take some pregnenolone because doing so will normalize the dhea level safely. Taking pregnenolone (no dhea taken) normalized my own dhea level, proven by lab testing.

Getting her off the estrogen and supplementing with progesterone should help with her state of mind. Supplementing with some thiamine might also be helpful.

https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2019.00207/full

notmcas

@notmcas Shes on norethindrone only. I know they're estrogenic but no periods are a such an extreme non negotiable for her with how painful they are. I'm very hopeful on progesterone doing it as well, I'd just take her current daily dose of norethindrone, see the affinity and try to match it with a similar dose of progesterone. The problem is I haven't seen any information online if that actually does stop the cycle like a progestin and haven't seen anyone claim it works?

For the detox I think carrot salad and something like calcium glucarate I think is good. Like you can probably imagine she's actually had worsening symptoms from suggestions like SSRI's from doctors so her patience is extremely low right now so I can't comfortably push her on anything that could make her worse. My current ideas are to try some colostrum and flowers of sulfur for the digestion a few days, and then unless that works great(in the case of maybe fungal growth) then I want to explore the very high dose thiamine along with magnesium(if it's an important cofactor). If that makes a substantial improvement then I think she'll be more open minded to progest-e. Again the cycle is the main thing holding her back, she's mortified of it returning so I'd just need to know that progest-e can do it just like a progestin.

@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

I'd just take her current daily dose of norethindrone, see the affinity and try to match it with a similar dose of progesterone. The problem is I haven't seen any information online if that actually does stop the cycle like a progestin and haven't seen anyone claim it works?

Articles by Ray Peat on progesterone and estrogen

Keep in mind that synthetic "progestins" are patented pharmaceuticals; they are NOT bio-identical progesterone because if they were, they could not be patented.

The best way to determine the ideal dose of progesterone is for your friend to take some (3 drops) and wait 10-15 minutes to determine her response to it. If no response happens, the take a second dose. If no response happens, repeat the dose yet again. Keep track of how many drops have been taken so you will know how many are needed to get a response. From my own experience, this response is pleasant and similar to having soaked in an epsom salts bath for an hour. This testing should be done in the evening so sleep can occur conveniently. I posted a link to the instructions that are provided with progest-e earlier. You might want to print them out for future reference.

"I'd just take her current daily dose of norethindrone, see the affinity...." What do you mean by that?

"her current daily dose of norethindrone":
Norethindrone:
https://www.mayoclinic.org/drugs-supplements/norethindrone-oral-route/description/drg-20137986

"Norethindrone is used to prevent pregnancy. It works by stopping a woman's egg from fully developing each month. The egg can no longer accept a sperm and fertilization (pregnancy) is prevented.

Norethindrone is also used to treat secondary amenorrhea (absence of menstrual periods in women who have previously had a menstrual period who are not pregnant), endometriosis, and irregular menstrual periods caused by hormonal imbalance. "

also this:
https://www.drugs.com/mtm/norethindrone.html
Norethindrone side effects

Get emergency medical help if you have signs of an allergic reaction: hives; difficult breathing; swelling of your face, lips, tongue, or throat.

Norethindrone may cause serious side effects. Call your doctor at once if you have:

sudden vision loss, bulging eyes, or severe headache;

swelling, rapid weight gain;

unusual vaginal bleeding;

missed menstrual periods;

pelvic pain (especially on one side);

a breast lump;

a light-headed feeling, like you might pass out;

increased thirst, increased urination;

liver problems--loss of appetite, stomach pain (upper right side), dark urine, jaundice (yellowing of the skin or eyes); or

signs of a blood clot--sudden numbness or weakness, problems with vision or speech, chest pain, shortness of breath, swelling or redness in an arm or leg.

Common side effects of norethindrone may include:

irregular vaginal bleeding or spotting;

headache;

breast pain or swelling;

stomach pain, bloating, nausea, vomiting;

hair loss;

depressed mood, trouble sleeping;

weight gain; or

vaginal itching or discharge.

This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

(more here)

Please note that "liver problems" are included in the list above. This means to me that this drug puts a burden on the liver. Livers need to be in good shape in order to detox estrogen.

notmcas

@notmcas According to wikipedia norenthindrone has 150% affinity for the progesterone receptor. I'm going to assume this is what's having the main effect in preventing the egg from fully developing each month. I assumed that if she takes 1.5x the progesterone of the norethindrone daily that it would work the same to prevent periods.

I already know the norethindrone isn't safe but she says she can't stand the periods no matter what. I want to just give her some to see during a flare up but I'm afraid it will interfere with the norethindrone and cause a period? It's really challenging to make suggestions when the person is traumatized by horrible pain that started early so I'd essentially have to promise her that the progesterone will keep the cycle from occurring. Otherwise she'll stay on it and have to try something else like the thiamine until hopefully she's feeling well enough to change her mind.

@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

For the detox I think carrot salad and something like calcium glucarate I think is good. Like you can probably imagine she's actually had worsening symptoms from suggestions like SSRI's from doctors so her patience is extremely low right now so I can't comfortably push her on anything that could make her worse. My current ideas are to try some colostrum and flowers of sulfur for the digestion a few days, and then unless that works great(in the case of maybe fungal growth) then I want to explore the very high dose thiamine along with magnesium(if it's an important cofactor). If that makes a substantial improvement then I think she'll be more open minded to progest-e. Again the cycle is the main thing holding her back, she's mortified of it returning so I'd just need to know that progest-e can do it just like a progestin.

Although I don't know what colostrum would do for detoxing, I have taken it myself and it seems to be OK.

Flowers of sulfur may be a REALLY bad idea. She could determine following your advice is a dangerous thing to do.

I personally found thiamine hcl to be very helpful; I started at around 300-350mgs, divided into 2 doses/day, taken with water only, 30 minutes away from food. Mid morning and again mid afternoon works well. Avoid taking it late in the day because it will lower blood sugar which can interfere with sleep. An alternative to the thiamine hcl might be the sublingual thiamine discussed here. One of these sublingual tabs is said to equal a 100gm injection of thiamine hcl. This can be too high a dose to take every day; some people take it every other day. The tab can be easily broken in half or in fourths. It has to be taken correctly; there's a link to more info at the link I provided.

I take magnesium glycinate; I've found it helpful. However, care must be taken not to take too high a dose. Some people have a hard time tolerating magnesium; epsom salts baths (1 cup in tub, long soak) can prove very helpful if the intestine can't tolerate oral magnesium. Supplementing with thiamine can improve tolerance for magnesium.

https://www.youtube.com/watch?v=pBxWivhBdpA

https://www.hormonesmatter.com/why-thiamine-supplementation-requires-magnesium/

"If that makes a substantial improvement then I think she'll be more open minded to progest-e. Again the cycle is the main thing holding her back, she's mortified of it returning so I'd just need to know that progest-e can do it just like a progestin."

I think you're getting the cart before the horse. I think both of you should take the time to listen to the 3 hours of audio shows about progesterone that I provided earlier. I think getting off the pharmaceutical poison that she is now taking is primary. I think taking progest-e is a very good and reasonable alternative and should be foremost in your mind. Some thiamine and some magnesium are reasonable ideas. Thiamine and magnesium would be beneficial for her digestive tract. I wouldn't try to nuke her gut with flowers of sulfur, she just might walk out on you.

@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

According to wikipedia norenthindrone has 150% affinity for the progesterone receptor. I'm going to assume this is what's having the main effect in preventing the egg from fully developing each month. I assumed that if she takes 1.5x the progesterone of the norethindrone daily that it would work the same to prevent periods.

This is a hopelessly clueless statement from wikipedia. Please listen to the Ray Peat audio shows about progesterone. Wikipedia is not a reliable source.

The point of the progesterone is to counteract/lower her estrogen levels and get them to normalize. It's the estrogen that causes painful heavy periods. Forget about trying to manipulate the formation of eggs, I think that's just promotional advertising yak yak created by Big Pharma .

notmcas

@mostlylurking Thanks I’ll avoid the flowers of sulfur. I know Ray has suggested it for fungal overgrowth for a couple days and she’s had mold exposure

I personally do not tolerate magnesium glycinate it destroys my stomach. She seems to like epsom salts. Maybe the thiamine is the best first thing to try. I know you mean well but you have to understand she is just not open to the possibility of having periods, even if I told her they won’t be painful the trauma is so bad that I could pay her a million dollars and she’d refuse. The only way is if something like the theamine lowers her pain to the point where she’s a bit more open minded, OR if the progest-e works the same daily to prevent any bleeding. I mean I’m desperate at this point just understand that no matter what I say or she listens to that if getting a painful period again is on the table she’s out. So I’m really grasping for straws. The carrot, Cyproheptadine, and aspirin have at least helped along with vitamin d.

I really appreciate the help I’m just saying I’ve wanted her to try it for over a year. She’s beyond traumatized by the week long heavy bleeding and agonizing pain. I know the stuff is bad I just have no way of getting her off without her feeling better first. The only other option is to surgically remove it which is a last resort to me.