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

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

I take high dose benfo, thiaminHCL seem to crash my bg hard. But it's a long road, my digestion is so poor, continuous bloating and get really dizzy and week from food

I want to suggest that you spend some time over at Dr. Costantini's website. He was a neurologist in Italy who successfully treated thousands of Parkinson's Disease patients with thiamine hcl. He treated his patients mainly with injections of thiamine hcl, but he also used oral thiamine hcl. His Therapy page provides the information needed to convert the dose of 100mg thiamine by injection into what is needed if taking thiamine hcl by mouth. You see, thiamine hcl has a very poor absorption rate via the intestine so a massive amount needs to be taken orally compared to if taking it by injection.
links:
Who was Dr. Costantini
Therapy
Frequently Asked Questions
Patients' before and after videos
Dr. Costantini's research papers

Dr. Costantini said that people should not have any negative reactions to high dose thiamine hcl if the dose is calibrated correctly for them. The information provided on the Therapy page gave me the courage and understanding to increase my oral dose to 1 gram of thiamine hcl, taken 2Xday, with water only, 30 minutes away from consuming food.

The only time I had a negative reaction to taking high dose thiamine hcl was when I tried taking 2.5 grams of it in one day. That night, I experienced shooting electrical zapping pains in my thighs when I went to bed. That experience told me that I had overdone it so I resumed taking 1 gram of thiamine hcl, 2Xday, with the understanding that this indeed is my optimum dose.

notmcas

@frankincense I’m suspicious of mycotoxins for sure. But the tests aren’t very accessible, I have to argue with the doctors to insist they do them. They seem to not want to test anything.

notmcas

@mostlylurking Have you had any experiences with sublingual thiamine to avoid risk of digestive upset? I know it’s not fat soluble but maybe it could work in a ethanol solution or something?

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

Have you had any experiences with sublingual thiamine to avoid risk of digestive upset? I know it’s not fat soluble but maybe it could work in a ethanol solution or something?

I did try it. I was aware that it did get into my brain. It gets rave reviews from people who have tried it. Daphne Bryan's book is a good read and worth the money.

My problem with it is that I was having tremendous positive results via oral high dose thiamine hcl and I was having a hard time reconciling the dosage I should take of the sublingual versus my optimal dosage I had already worked out for thiamine hcl. By that time, I had gotten used to the taste so it didn't bother me anymore.

From memory:
2 grams of thiamine hcl, taken daily for 7 days equals to one 100mg of thiamine hcl taken by injection per week.
and
One 100mg tablet of sublingual thiamine mononitrate equals to one 100mg of thiamine hcl taken by injection.

I simply couldn't get it square in my mind that a single sublingual 100mg tablet per WEEK was going to do for me what 2 grams of thiamine hcl taken daily was doing for me. Thiamine doesn't stick around in the body very long because it is water soluble. Even the so called "fat soluble" thiamines are water soluble. So I don't understand it well enough and so I went back to taking the 2 grams of thiamine hcl daily. Thiamine hcl is considered a "safe" supplement and has been around for decades. Even Ray Peat considered it a "safe" supplement.

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

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.

I consume a LOT of gelatin too; I do think it is very helpful.

I managed to get my hypothyroidism corrected with the help of a good endo in 2015. But I still had many problems with my health. I got my thiamine function blocked summer of 2020 via Bactrim antibiotic and had started adding some thiamine that fall, but I developed hypothyroidism symptoms (low body temp, brain fog, zero energy). I got my thyroid panel run 2 months early because I thought I'd gotten a bad batch of NP Thyroid by Acella. The test results showed that my free 3 was was through the roof.

Evidently, my thyroid gland had awakened via the thiamine supplement and I no longer needed so much thyroid hormone supplement. My doctor lowered my dose of NP Thyroid from 180mgs down to 135mgs and explained to me that taking too much thyroid hormone causes hyperthyroidism, and hyperthyroidism causes a thiamine deficiency. So I began taking 135 mg of NP Thyroid and continued to increase my thiamine hcl dosage to 1 gram, 2Xday. I've been doing very well on this combination for 3 years. My connective tissue is good; my joints are good. My energy level is good. I'm 74.

Reconciling how much thyroid supplement you need to take with how much thiamine you need can be tricky because a deficit in either one of them can cause very similar symptoms. This is because lack of either T3 or thiamine will block oxidative metabolism. This reduction in my thyroid med dose happened December of 2020; I have continued to take (and need) 135mg of NP Thyroid and I have been taking 1 gram of thiamine hcl, 2Xday since February of 2021. This combination seems to be what I need. My doctor though, has been making noises that make me think he wants to lower my thyroid med again, because of my age. I may actually be able to lower it now with no problem because my body seems to be working so well with the addition of the high dose thiamine hcl. Maybe my thyroid is able to crank out more hormone on its own now because it's getting the thiamine it needs? Maybe.

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

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.

Have you banished polyunsaturated fats (PUFA) from your diet? According to Ray Peat, PUFA is very bad for the connective tissue. It is my understanding that the body can use vitamin E to saturate PUFA so it's not so toxic. So it may be that you have PUFA stored in your fat cells and when it gets into circulation as free fatty acids you get symptoms. Niacinamide can be very helpful by keeping free fatty acids low. I take 100mg 4Xday. It is water soluble so it only sticks around maybe 2 hours so it works better if you take smaller doses more frequently.

Ray Peat on polyunsaturated fats
Ray Peat on niacinamide
Ray Peat on vitamin E

edit: Please note that an article shows up on one of the linked lists about caffeine. I found that coffee and black tea are things that I cannot tolerate at all because both of these block thiamine function.

notmcas

I remember Ray saying something along the lines of vitamin e products not being as good anymore. I’m not sure where the one in progeste e is sourced from because that could be useful

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

I remember Ray saying something along the lines of vitamin e products not being as good anymore. I’m not sure where the one in progeste e is sourced from because that could be useful

This company's vitamin E products are good. I've used them to dissolve progesterone in and the E is high enough quality to dissolve the progesterone completely and it stays in suspension fine. I'm pretty sure that Ray Peat also singled out this company's vitamin E as being good. Of course now I can't find that quote. I'm not affiliated with the company.

If memory serves, I think that the problem about the vitamine E that Ray was talking about was that people were cutting corners when making his progesterone product to the point that what they were using was "almost" vitamin E and "almost" progesterone in order to make more money on the product they were supposed to be manufacturing. So Peat severed that relationship with whoever that business partner was. This was a long time ago. There's no problem with the current Progest-E.

skywxlker

I've long suspected EDS in myself after seeing some links between EDS and ME/CFS.

Some casual tests on myself show I am mild on the EDS scale. However I also have mild tissue deformities like a crooked rib, slight underbite, semi-flat feet, difficult to gain muscle, Osgood-Schlatter's in both knees growing up...

I suspect a glycine, vitamin A and K deficiencies along with any number of B vitamin deficiencies. Zinc, copper, manganese, possibly iron and cholesterol.

High estrogen, low androgens.

Idk if Weston A. Price ever talks about this specifically, but he emphasizes the importance of these nutrients coming from animal foods and organs.

And in my casual observations, it seems quite clear that deficiencies in these nutrients, create for a weak, feeble, dysgenic body as opposed to the strong archetypical high androgenized bodies.

Growing up I played sports and I was the runt of the pack while on the other hand I had some friends were absolute beasts. My body was flimsy, theirs were sturdy and built. Thick skinned as well. Never lifted weights but strong and powerful. And I noticed those friends ate beef and butter, home cooked meals. While the runts like myself ate processed foods and grains.

Personally I've getting success eating 5-6 eggs yolks, beef liver, cheese and supplementing with vitamin K, A, E, zinc picolinate, selenium, manganese, coq10, shilahit, raw honey and ghee.

cleaning up your environment, avoiding zeno-estrogens, soy, plastics, pesticides. living a more wild lifestyle, ie nature/hiking.

EDS people simply appear low T, low androgens. while the opposite are usually the strong among us... faster wound repairs, can take on more damage, not flexible, more gravitas in their physique.

LinDaiyu

This post lowkey been popping off

Ecstatic_Hamster

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

@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.

You may have to up it to a gram a day for this condition.
I can’t see why high cholesterol is a problem, frankly.

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

You may have to up it to a gram a day for this condition.
I can’t see why high cholesterol is a problem, frankly.

Well, I didn't understand why my 250mg of pregnenolone would spike my cholesterol level either. But it made sense to me that it might be the cause of my higher cholesterol (total 236). I've never had that issue before and I take 135mg of prescription desiccated thyroid daily (NP Thyroid by Accella, great stuff). Increasing my thyroid prescription dose was clearly off the table as a solution.

My higher cholesterol really didn't bother me but it really got both of my doctors' attention and threats of statin drugs to lower it got my attention as statins are really dangerous. I had doubled my pregnenolone dose when I got so sick in 2020 from taking Bactrim antibiotic which blocked my thiamine function. My cholesterol was around 203-208 for a long time and the jump to 236 that got the doctors' attention happened in 2022. By then I had recovered my health (re. the thiamine functional blockage/deficiency). I didn't notice any negative symptoms when I lowered my pregnenolone dose back down. Maybe I simply didn't need the higher dose of it anymore.

The body converts cholesterol into pregnenolone as the first step on the way to other beneficial things like progesterone, etc. I reasoned that if my body felt that I had plenty of pregnenolone (from supplementation) that it wouldn't bother converting more cholesterol into pregnenolone. So I cut the dose of pregnenolone and my body resumed converting cholesterol into pregnenolone which normalized my cholesterol level.

Ray Peat on pregnenolone, written work
Ray Peat on pregnenolone, interviews

notmcas

@mostlylurking I'm surprised that they'd give you such trouble at a total of 236. Mine was 300 and my doctor wouldn't even consider thyroid despite my tsh being ~3 and I'm still young. I was able to game tests by upping selenium, vitamin A, and taurine pretty high but they still just call it a fluke and won't consider any kind of thyroid which I bet would lower it. My dad has the same issue of high cholesterol and temps around 95-96 and doc is constantly threatening statins and yelling at him, his tsh is about 3.8. Did you have to have an over range tsh to get thyroid? My temps are okay if I eat often but drop otherwise so I suspect low sustaining t4.

Ecstatic_Hamster

@mostlylurking i suppose it depends on your relationship with the health “professionals.” I wouldn’t have budged and that isn’t high at all. I know a physician who has dealt with Ehlers Danlos in his patients and he and I have talked for hours about it, and high dose pregnenolone is very helpful.

Also low dose naltrexone is something I would be all over:
https://www.ldnscience.org/research/low-dose-naltrexone-in-the-management-of-ehlers-danlos-syndrome-associated-pain

This is a case of a 35 year old female with history of Ehlers Danlos syndrome, small fiber neuropathy in her left lower extremity, and lumbar radiculopathy who presented to our pain clinic suffering from chronic widespread muscular and joint pain along with persistent neuropathic pain in the lower extremity. Her pain regimen included anticonvulsants, narcotics, and NSAIDS. Over time, her pain regimen as described was inadequately controlling her pain. She was weaned off her narcotics and started on the low dose naltrexone therapy (4.5mg per day). The patient had excellent response with reduction in her pain severity and increase in her daily functionality. At 12 months follow up, she continues to report excellent symptom control without any escalation in adjuvant medications and has resumed her occupation. The patient has tolerated the therapy without any adverse side effects.

Ecstatic_Hamster

@Ecstatic_Hamster I would also be probably using cannabis, CBD + THC. Rectal suppositories are easy to make and don’t make you high.
https://projectcbd.org/health/ehlers-danlos/

notmcas

@Ecstatic_Hamster Couldn't you dissolve the cbd+thc in tocopherols and avoid the whole suppository? My girlfriend does say it helps quite a bit during a flare up. Pregnenolone seems useful, I assume dosed a few times a day. I'm a bit more nervous about naltrexone, she is reliant on barbiturates for bad flare ups but doesn't seem to experience serious withdrawl since she's careful. And naltrexone isn't really solving the underlying issues?

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

I'm surprised that they'd give you such trouble at a total of 236. Mine was 300 and my doctor wouldn't even consider thyroid despite my tsh being ~3 and I'm still young. I was able to game tests by upping selenium, vitamin A, and taurine pretty high but they still just call it a fluke and won't consider any kind of thyroid which I bet would lower it. My dad has the same issue of high cholesterol and temps around 95-96 and doc is constantly threatening statins and yelling at him, his tsh is about 3.8. Did you have to have an over range tsh to get thyroid?

I suspect that they were just itching to find justification to put me on something; I'm 74 and all I take that is prescription is my NP Thyroid by Acella.

"Mine was 300 and my doctor wouldn't even consider thyroid despite my tsh being ~3 and I'm still young."
This clearly points to a problem with hypothyroidism. If your doctor won't consider prescribing a good desiccated thyroid product like NP Thyroid, you probably should be looking for a better doctor. Asking your local pharmacists which doctors are prescribing NP Thyroid by Accella would shorten your search. Your father probably has the same problem so would also benefit from your effort to find a competent doctor.

Ray Peat on hypothyroidism
Read this one first.

"Did you have to have an over range tsh to get thyroid?
No, I don't. My tsh has always been around .01-.001. TSH really isn't a helpful test. The range is way to broad on the test. TSH is short for "thyroid stimulating hormone" which is released by the pituitary. My current endocrinologist said he had seen that almost zero TSH before and said he would ignore that part of the test and rely more on my symptoms.

Read this one by Ray Peat for better understanding.

I added 200mcg of selenium last summer and the numbers on my blood tests noticeably improved. Selenium is needed to convert T4 into T3 via the diodinases.
"Selenium plays a crucial role in TH metabolism due to its location in the catalytic site of the three deiodinases [76]. Since the thyroid gland, with its capacity to store selenium, maintains a high concentration of this element, it is not easy to evaluate the immediate benefits of dietary selenium supplementation on selenium-containing enzymes [77]. Nonetheless, clinical data suggest that selenium deficiency is associated with an increased risk of a high anti-thyroid antibody titer, whereas selenium supplementation decreases thyroid peroxidase antibody titer, which could allow routine selenium supplementation as an additive tool to permit a reduction in the levothyroxine dose required for hypothyroidism therapy or to prevent progression of subclinical hypothyroidism [78–80]."

I was very low in selenium because of my mercury toxicity. Mercury causes problems with selenium.

notmcas

@mostlylurking That's interesting, I'd like to see her do a selenium test too. She reacts very bad to shots so maybe it's a consideration of heavy metals. For me I wanted to get something like NP Thyroid or even just levothyroxine since I actually think I convert pretty good I just cannot tolerate fasting without my temp bottoming. My doctor will not even consider it unless tsh goes above 5 though so I'd basically have to game it by fasting a while or consuming too much iodine or whatever trick to get it over the threshold for a test...

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

My girlfriend does say it helps quite a bit during a flare up. Pregnenolone seems useful, I assume dosed a few times a day. I'm a bit more nervous about naltrexone, she is reliant on barbiturates for bad flare ups but doesn't seem to experience serious withdrawl since she's careful. And naltrexone isn't really solving the underlying issues?

Vitamin E and progesterone work in similar ways.
Ray Peat on vitamin E and progesterone, interviews

Has your girlfriend removed all polyunsaturated fats (PUFA) from her diet? The body stores PUFA in the fat cells for years. Taking some niacinamide (smaller doses, several times/day) help with the PUFA problem.
Ray Peat on Niacinamide, written work
Ray Peat on niacinamide and free fatty acids, interviews

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

That's interesting, I'd like to see her do a selenium test too. She reacts very bad to shots so maybe it's a consideration of heavy metals. For me I wanted to get something like NP Thyroid or even just levothyroxine since I actually think I convert pretty good I just cannot tolerate fasting without my temp bottoming. My doctor will not even consider it unless tsh goes above 5 though so I'd basically have to game it by fasting a while or consuming too much iodine or whatever trick to get it over the threshold for a test...

Does your girlfriend have any silver fillings?

NP thyroid (a prescription natural desiccated thyroid product) would work better for anyone, I think. Synthetic T4 is really lousy stuff. Personal opinion. Your doctor sounds clueless. Trying to "game the test" really is a terrible idea. If you are not happy with the doctor, (I wouldn't be from what you've said here) you should find a better one. Think of doctors as shade tree mechanics (that's probably an insult to shade tree mechanics).
See this Ray Peat article