Anyone with Ehlers Danlos and chronic pain flare ups find a solution?
-
@notmcas okay thanks so much I’m hopeful. I’m really perplexed by the crazy low serotonin levels. I mean she does pretty well in Cyproheptadine so I was thinking maybe it’s blocking the effects of serotonin. Maybe the brain tissue is saturated so the snri keeps the blood level low. It’s definitely strange but we already ordered some thiamine at least. Her doctor wanted her to take serotonin as 5htp but I’ve been steering her away from it with fear that it makes things so much worse
-
@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
okay thanks so much I’m hopeful. I’m really perplexed by the crazy low serotonin levels. I mean she does pretty well in Cyproheptadine so I was thinking maybe it’s blocking the effects of serotonin. Maybe the brain tissue is saturated so the snri keeps the blood level low. It’s definitely strange but we already ordered some thiamine at least. Her doctor wanted her to take serotonin as 5htp but I’ve been steering her away from it with fear that it makes things so much worse
My guess is that the "test" for serotonin levels doesn't really work. Everybody has serotonin; it is mainly in the intestine. Many doctors like to prescribe drugs that increase the level of serotonin because people have been told that it is the "happy hormone". It is not the happy hormone. It is highly inflammatory and causes major problems if elevated. Yes, serotonin will make the situation worse. The SNRI she is taking now increases serotonin. 5htp is very bad also. Learn about the dangers of serotonin by reading the articles I've already posted.
-
@mostlylurking got it, I agree with this but the SNRI was really helping her a lot for a time. Actually I do think Ray meantioned that while harmful SSRI drugs can actually deplete serotonin to some extent contributing to its benefits. I hope now she has reason to get off it at least, and I was looking at that unique-e. Do you like the softgels or topical in oil? Ray's said that it can be a good anesthetic by reducing inflammation.
-
@notmcas I use the pump Unique-E; I mix progesterone in it. I'm not taking just the vitamin E alone. Progest-E is the easy way to take the same thing I am taking.
-
@mostlylurking said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
@Peatly Interesting article, thanks for posting. That photo of the person's thumb touching their wrist area brought back memories; I was like that when I was younger. I'm healthier now since I addressed my estrogen dominance and my hypothyroidism and my need for more thiamine, etc. I tried to see if I could still touch my wrist with my thumb; not even close.
Good to know this can be reversed. That thumb to wrist move used to be a fun party trick now it’s not so funny.
Your posts are helpful, here and the RPF, thank you.
-
@Peatly said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
Your posts are helpful, here and the RPF, thank you.
You're welcome. I'm so glad that I have the opportunity to try to help other people with what I've learned along this health journey.
-
I just remembered some research I did last year on Ehlers Danlos. It may be caused by inability to utilize folate, and the solution is methylated folate.
https://www.sciencedaily.com/releases/2023/04/230410111650.htm
Researchers at Tulane University School of Medicine have linked hypermobility to a deficiency of folate -- the natural form of vitamin B9 -- caused by a variation of the MTHFR gene.
"You've got millions of people that likely have this, and until now, there's been no known cause we've known to treat," said Dr. Gregory Bix, director of the Tulane University Clinical Neuroscience Research Center. "It's a big deal."
Those with this genetic variant can't metabolize folate, which causes unmetabolized folate to accumulate in the bloodstream. The folate deficiency may prevent key proteins from binding collagen to the extracellular matrix. This results in more elastic connective tissue, hypermobility, and a potential cascade of associated conditions.
The discovery could help doctors more accurately diagnose hypermobility and hypermobile EDS by looking for elevated folate levels in blood tests as well as the MTHFR genetic variant.
"Hypermobility is widespread and unfortunately under-recognized," said Dr. Jacques Courseault, medical director of the Tulane Fascia Institute and Treatment Center. "I'm excited about being able to treat the masses where people aren't going their whole lives being frustrated and not getting the treatment they need."
—
You could try this
https://www.amazon.com/Opti-Folate-L-Methylfolate-Capsules-Optimized-Activated/dp/B07KPJ5PXS -
@Ecstatic_Hamster said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
Researchers at Tulane University School of Medicine have linked hypermobility to a deficiency of folate -- the natural form of vitamin B9 -- caused by a variation of the MTHFR gene.
Thank you for this article. I'll take a look at it. I went over to the supplement that you provided a link to. I also compared the product to others at pureformulas.com. I found this one which has the same amount of methyfolate for a whole lot more money. But it has fewer "added ingredients"; just 200mg of glycine, no excipients. I always like to read the product reviews for new supplements that I'm considering so I also read the reviews for both.
I'll mull this over a while before I purchase. Thanks again.
-
Well, doesn't seem like the B1/Thiamine does much. Shes tried it for a bit, maybe it's best to explore a b complex. Also she got immediately worse after low dose naltrexone so she's pretty unwilling to go through with it.
Maybe a high dose of daily aspirin/k2 is a good idea? -
Thiamine need is driven by heavy metals
Treating symptoms with thiamine is allopathic thinking
-
@questforhealth said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
Thiamine need is driven by heavy metals
Treating symptoms with thiamine is allopathic thinking
What do you mean by that?
Multiple things cause problems with thiamine function and multiple things exacerbate thiamine deficiency. It is a complicated topic.
Hiding in Plain Sight: Modern Thiamine Deficiency
Cell damage through pentose phosphate pathway in fetus fibroblast cells exposed to methyl mercury
Fatty acid signatures connect thiamine deficiency with the diet of the Atlantic salmon (Salmo salar) feeding in the Baltic Sea This one shows that PUFA (causes oxidative stress) causes thiamine deficiency in spawning salmon. Adding thiamine to the water saved the salmon egg hatch.
My own mercury toxicity exacerbated my thiamine deficiency. Mercury causes high oxidative stress. Thiamine quenches oxidative stress. But continuously high oxidative stress can use up the available thiamine, causing deficiency. So high dose thiamine hcl has been extremely helpful for me. Since there is no safe way to get rid of the mercury, it seems to me that addressing the thiamine issue is a positive thing to do.
-
@mostlylurking
Look at our thread about citrus pectin. I've been taking it and probably feel better than I have in years
-
@questforhealth said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
@mostlylurking
Look at our thread about citrus pectin. I've been taking it and probably feel better than I have in years
link?
-
@mostlylurking
Bit sad to see learned helplessness on this forum, nature gave us all we need
no reason we should have to swallow b1 for our whole life
-
Do you think she should take citrus pectin? It's been a week using thiamine and she's not feeling any better, maybe worse actually? Although I made a salve of progesterone and dhea which actually works pretty well. I've been thinking high doses of aspirin + k2 could be useful too
-
post deleted
-
wat I was just trying to help