Anyone with Ehlers Danlos and chronic pain flare ups find a solution?
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@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.
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@notmcas
"Thanks I’ll avoid the flowers of sulfur. I know Ray has suggested it for fungal overgrowth for a couple days."
Good plan. Keep in mind, your girlfriend is not a lab rat."I personally do not tolerate magnesium glycinate it destroys my stomach. "
Maybe you need some thiamine...."She seems to like epsom salts."
Baths? Maybe she is magnesium deficient...."Maybe the thiamine is the best first thing to try."
It might be beneficial. It's another topic though."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."
She's female, of child-bearing age. Periods/cycling is part of life. I'll suggest one more time: start with listening to the Ray Peat audios about progesterone. This is a non threatening and reasonable way to begin. The first step is to get educated."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."
Listen to the audios about progesterone. You are wringing your hands whilst stiff arming me."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."
It's nice that these things have helped. Now. Relax. Deep breath. Start listening to #1 of the audio shows."She’s beyond traumatized by the week long heavy bleeding and agonizing pain."
I've been there and done that. For many years. I made the mistake of getting a tubal ligation at age 28. It cut off my progesterone production and my periods after that were extremely bad. You know you're in trouble when the doctor says you need to be hospitalized for a blood transfusion because you are so anemic you're going to die without it. But that only kept happening monthly for 22 years (the hemorrhaging, not the hospitalization), then I went through menopause, which increased my estrogen load and created a whole new set of problems.I sure wish I had had some nice person offer me the Ray Peat audio shows about progesterone to listen to back when I was 27, my life would have been a whole lot easier.... Has she ever experienced a decidual cast? I did. In a public restroom. While working at a trade show, far from home. These things can become problematic. Gosh, if only I had had the opportunity to listen to some Ray Peat audio shows about progesterone....
"I know the stuff is bad I just have no way of getting her off without her feeling better first."
So I guess there's no point in listening to some Ray Peat audio shows. Oh, well."The only other option is to surgically remove it which is a last resort to me."
Say hello to a whole new set of problems that last for the rest of your life.How old is your girlfriend anyway?
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@notmcas Yes the baths. She's in her early 20's. Like I said though I agree with you and I've listened to those 3 myself already and tried to get her to and will continue to try to get her to listen to and read up on it. I just want to make it clear that I've listened to hundreds of hours of Ray's interviews and read his website. I'm not dismissing anything you say, I just literally can't make her do something if she's unwilling to, and the moment the prospect of a normal period comes up she won't even consider it. No she's not a lab rat(and the reason is she does show clear signs of mold exposure, Ray made it seem that a pinch of flowers of sulfur is very safe), which is exactly why I can't just make her listen to something or take progesterone. The only reason she's willing to try those things is because there's not the same risk of causing bleeding. I'm not trying to be mean or anything I'm just saying I don't have the means to get her to be interesting in progesterone, I try all the time and I'll keep trying to get her to listen with me and to be open minded. I mean the improvements she's made have made her a little more open minded so I'm hopeful that she just needs a little more to consider the progesterone even if the risk of a cycle exists. I'll talk to her more about it, at least I convinced her to not think about surgery for a while. I really really try my best to get her to look into it. I promise I’ll keep insisting she listen with me, I just know that with every improvement she makes she’s more willing to consider it. Anyway I really appreciate the info, I want nothing more than for her to feel better but ultimately she has to be interested in it too, maybe with time she’ll look more into it
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@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
The only reason she's willing to try those things is because there's not the same risk of causing bleeding. I'm not trying to be mean or anything I'm just saying I don't have the means to get her to be interesting in progesterone, I try all the time and I'll keep trying to get her to listen with me and to be open minded.
I've been married to the same man for 38 years. I've learned a few things along the way. Sometimes it's better to take a step back and stop pushing. Sometimes it works better if you write her a letter about it so she can read it without you being present. So she can mull it over in her own time in her own way.
Burn a CD of the audio shows for her. Buy a little boom box that will play mp3 recordings. You could gift wrap it if you want. Pick out a nice card or write her a letter, don't make it too long and simply encourage her to listen to the CD when she gets time. Woo her.
FYI, I've been strict about my diet forever. I've been NO PUFA since 2015. My husband thinks I'm nuts. He still eats lunch out everyday. His skin looks terrible because of all the lipofuscin. I love him anyway and I'll miss him when he's gone. Honestly, at the end of the day, the only person you can save is yourself.
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@mostlylurking I had a talk with her and I think as long as I’m always supportive it’s something she’ll try after. But she wants to try only a small bit on arthritis flare ups first before on the gums or systemic. I’ll leave her to think about it herself and what she wants like you said. I have couple bottles of progest-e if she ever wants to try
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@notmcas The hard part now is letting her make the next move instead of you.
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@notmcas I left out the part of my story about me getting rheumatoid arthritis and losing the use of my thumbs. Estrogen begets inflammation and inflammation really hurts. She'll come around.
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I supposedly had EDS, symptoms such as scoliosis, weak and loose ligaments, arthritis symptoms, etc. However after some deep digging I came to the conclusion that it was actually being caused by Glyphosate in food which denatured and negatively affected collagen (can find all studies and relevant info soon which led me to this conclusion if needed).
Entirely solved this when I had took a month long sabbatical to a family home abroad where all food was farmed themselves and therefore not sprayed with toxic pesticides, first thing I noticed was improvements in posture and then joints "sitting" better, I'd hear things crack and pop back into the right place. It never returned after that. My thoughts are that it can heal itself but only as long as the gut is able to stay in good condition for long enough time, another factor is during this time I had relatively low stress levels whereas usually mine are high.
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@shedim I’ve read about that theory before. Supposedly supplemental glycine could offset the glyphosate. Have you tried this or has your improvement stuck around after returning to your typical lifestyle?
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@shedim I searched for "thiamine" and "glyphosate" and found this interesting article:
Evidence that glyphosate is a causative agent in
chronic sub-clinical metabolic acidosis and
mitochondrial dysfunction
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"Well-established is the fact that ingesting large
amounts of glyphosate causes metabolic acidosis and other
pathophysiologic changes. Clinical signs of acute
glyphosate poisoning include severe acidosis determined
by low blood pH, hyperkalemia, hypernatremia, raised
creatinine and blood urea levels, hypotension, hypoxemia
and reduced serum bicarbonate. Severe poisoning causes
dehydration, pneumonitis, oliguria, altered level of
consciousness, hepatic dysfunction, pulmonary edema and
dysrhythmias. 1,2,3 We submit by logical extension that
ingesting low levels of glyphosate on a continuous basis
can contribute to sub-clinical, low-grade acidosis. We have
identified several mechanisms by which glyphosate can
cause metabolic acidosis and acquired errors of
metabolism and have presented the data and citations in
the Background section of this paper.
Lactic acidosis is a high-ion gap metabolic acidosis
caused by overproduction and/or underutilization of
lactic acid. Lactic acid is overproduced when tissues
are deficient in oxygen, forcing the conversion of
pyruvate to lactate in anaerobic glycolysis
(fermentation). Pyruvate, the sole precursor of lactic
acid, is utilized by the mitochondria in aerobic cellular
respiration. Lactic acid can be converted to glucose via
pyruvate dehydrogenase (requires thiamine and other
nutrients that are commonly deficient) or oxidized.
Lactate is oxidized in the liver via bicarbonate. The
kidneys also dispose of lactate, albeit to a lesser extent.
The possible causes of lactic acidosis are oxygen deficit
(tissue hypoxia) resulting from pulmonary or circulatory
problems, thiamine deficiency, liver disease, renal
failure, and uncoupling of the oxidative phosphorylation
(OxPhos) step in the Krebs cycle. Prolonged acidosis
leads to multiple organ failure and death.4"If you search the page for "thiamine", you will find the article Hiding in Plain Sight by Dr. Chandler Marrs and Dr. Derrick Lonsdale, (quote provided):
"... Rounding out the modern threats to thiamine status in developed countries, pervasive exposures to environmental chemicals and industrial pollutants, damage mitochondrial functioning, even at low, and what are considered, non-toxic exposures [152,[177][178][179][180] accelerating the need for thiamine and other mitochondrial nutrients. ..." -
@notmcas improvement has definitely stuck around, before that I had a rotator cuff injury which was chronically recurring (kept dislocating) and just wouldn't heal, however now it is entirely healed. Where I previously felt "holes" in my infraspinatus, no such holes exist anymore. PT helped considerably but up until that point, even PT wasn't really making much of a difference.
I also do take a multivitamin which contains D3, Calcium, magnesium, Zinc, Maganese, Copper, K2, Selenium & Boron. Besides this, I took Lornoxican and Thiocolchicoside daily under recommendation of a doctor back in my families country, it was for two weeks. I have also been putting a lot of conscious effort onto repairing my posture as well as this, mostly using a foam ball for my back, physio bands for mobility exercises, and also laying flat on the floor for about 20 mins a day (also ensure sleeping posture is good and you have a good pillow).
What I will say is that any issue I faced before is gone, even now back to my "normal life" which has pretty high stress exposure I've noticed my skin doesn't flare up with spots or get flaky anymore either, so for now I'd assume this to be "permanent" fingers crossed.
Suffering from EDS is definitely not a fun thing to experience but I have faith you can get past it and solve it.
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@mostlylurking Great find, I think a proper supplementation & detoxification protocol could solve many "genetic" and "lifelong" issues people face today, since things like this are so prevalent everywhere. Glyphosate is honestly poison and it's utterly criminal that so many people are being exposed to it on a daily basis without even knowing the danger behind it.
Fun fact, the same company who produce this pesticide in bulk today used to produce Agent Orange during the Vietnam war, seems like they never stopped making chemical weapons
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@shedim said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
Glyphosate is honestly poison and it's utterly criminal that so many people are being exposed to it on a daily basis without even knowing the danger behind it.
Fun fact, the same company who produce this pesticide in bulk today used to produce Agent Orange during the Vietnam war, seems like they never stopped making chemical weapons
I may be mistaken about this, but it is my understanding that glyphosate and agent orange are pretty much the same thing.
https://www.hillandponton.com/weeds-not-worth-killing-with-roundup/My husband is a disabled Vietnam War vet, with Agent Orange exposure. A couple of years ago, the VA admitted that Agent Orange exposure causes hypothyroidism. When that info came out, my husband finally got on board with my efforts to address his hypothyroidism. He's taking NP Thyroid now and acts like he is 15 years younger. He also takes 200mg of TTFD thiamine daily.
So I believe that glyphosate damages oxidative metabolism multiple ways: it causes hypothyroidism and it also wreaks havoc by exacerbating the need for thiamine which causes thiamine deficiency.
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@mostlylurking I’m always a bit nervous about multivitamins, I’m relatively healthy myself but sometimes I’ll try one and I get an absolutely horrible reaction. I’ve tried brewers yeast with boiling water and it was much more tolerable to me but still I prefer to just drink lots of milk with liver and shellfish. But I think she might need doses that aren’t realistic with food. Maybe a month retreat to a high altitude cabin is good for people too
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@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
I’m always a bit nervous about multivitamins, I’m relatively healthy myself but sometimes I’ll try one and I get an absolutely horrible reaction. I’ve tried brewers yeast with boiling water and it was much more tolerable to me but still I prefer to just drink lots of milk with liver and shellfish. But I think she might need doses that aren’t realistic with food. Maybe a month retreat to a high altitude cabin is good for people too
I'm not a fan of multivitamins either. It seems they always put things in there that I don't want to take. So I take individual pure powdered vitamins that I get mostly from purebulk.com . These don't have any excipients and I can test a single thing alone to evaluate how I react to it.
A month retreat to a high altitude cabin sounds fabulous. Ray Peat has said that it will increase the carbon dioxide level in your body's tissues. Carbon dioxide is very beneficial; it is anti-inflammatory. Taking a thiamine supplement optimizes oxidative metabolism which results in the end product being carbon dioxide (anti-inflammatory) instead of lactic acid (inflammatory).
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@notmcas I found a study that you may find of interest:
Thiamine Deficiency and High Estrogen Findings in Uterine Cancer and in Menorrhagia
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The finding of abnormal estrogenic activity coupled with thiamine deficiency in cases of menorrhagia and uterine cancer suggests a possible etiological correlation between the dietary deficiency, the abnormal estrogen level, and the pathological lesion. The specific element deficient in these cases was thiamine, while the other B factors were normal. Preliminary report of the evidence is made in this small series while more extensive studies on a large series of cases are being pursued. Cornification in cytology smears was used to study estrogenic activity, since the present study was prompted by cytological findings; the method is simple, practical, and reasonably accurate. The urinary estimation measures only the amount excreted, and if liver impairment actually is present, the quantity excreted would not give a true index of the amount retained in the body. Further studies are being undertaken in which estrogenic, urinary, and cornification levels are being compared before and after thiamine administration in cases proven to be deficient.
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This study shows up a LOT in search results; you may be able to find the full study posted somewhere on line. -
@mostlylurking Thank you, I'm very keen on her looking into the high dose thiamine, she's tried ALLITHIAMINE(TTFD) before for a few days but didn't notice anything substantial and stopped, maybe hcl is the best route.
I think a full estrogen test is definitely warranted in these cases. Unfortunately it's not an uncommon a story anymore, and even more unfortunate is that doctors seem pretty unwilling to order a test for even estradiol at least in the US. I think I want to order one for total e, estradiol, and progesterone. Another big thing is that progesterone can remove estrogen from the cell/tissues but like you noted it's possible to get a detox reaction from the freed estrogen especially with an impaired liver.
Maybe I'm wrong on this but it makes me think that to detox from estrogen quickly someone would want to take some calcium d glucarate since attaching glucaronic acid to estrogen is how it's made water soluble and excreted in the urine... and to either so something like a milk fast prior to this to heal up the liver or take an aromatase inhibitor to block some of the estrogen activity while detoxing similar to how bodybuilders will use PCT's?
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@notmcas It's my understanding that thiamine resolves inflammation by lowering lactic acidosis.
I've also read that thiamine "modulates" nitric oxide (NO), meaning that thiamine deficiency can cause cardiovascular disease and thiamine deficiency also can cause increased brain endothelial nitric oxide synthase (brain inflammation). Nitric oxide is inflammatory; the right amount at the right place at the right time is helpful; too much for too long is dangerous. It is important to understand that thiamine deficiency derails the control of nitric oxide release. It makes sense that thiamine deficiency would do so because thiamine is required for the autonomic nervous system to function properly.
additional links:
Ray Peat audios about nitric oxide
Ray Peat's written work about nitric oxide
Thiamine and magnesium deficiencies: Keys to disease -
@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:
I think a full estrogen test is definitely warranted in these cases. Unfortunately it's not an uncommon a story anymore, and even more unfortunate is that doctors seem pretty unwilling to order a test for even estradiol at least in the US. I think I want to order one for total e, estradiol, and progesterone. Another big thing is that progesterone can remove estrogen from the cell/tissues but like you noted it's possible to get a detox reaction from the freed estrogen especially with an impaired liver.
According to Ray Peat, all estrogen is carcinogenic; they vary a little in how strongly each is carcinogenic, but the fact that each can morph into another makes me think that simply focusing on things that lower estrogen in general is the important thing. PUFA (polyunsaturated fats) are all estrogenic so banishing it from the diet is very important. There's lots of toxic estrogenic pollution floating all around us. Lots of plastics (all?) are estrogenic. So purging the pantry and the bathroom of iffy items would be a really good idea.
The role of environmental estrogens and autoimmunity
Ray Peat on estrogen in his written work
Ray Peat on estrogen in his interviewsLiver function is very important
Ray Peat on liver function, audio shows
Ray Peat on liver function, written workalso this one may be of interest:
https://www.functionalps.com/blog/2012/07/05/menstrual-cycle/ -
@notmcas based on what you’re describing and you mentioning that prednisone brings relief, have you considered that mold exposure could be contributing? Have you been tested for mycotoxins?
