Ehlers Danlos comorbidities and treatment?

nogluten

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My girlfriend and her mother both suffer from hEDS.
Both have seen lots of doctors but I'll mainly address my girlfriend.
I think her true underlying condition is just hEDS and it's comorbities, but doctors have diagnosed her with Fibromyalga, Pain??, and said her joints look arthritic in her late teens(she's 20 now). An important note is that all these issues really started to become more significant at puberty, making me think the rise of estrogen is reinforcing the issue.

Her symptoms:
- Migraines: she gets severe migraines a couple times per week that get worse with light exposure and are more common if she hasn't eaten is some time.
- Body pain: if under stress(mental of physical) she'll get flare ups where she'll experience pain(nerve pain?) in her whole body often accompanied by the migraine.\\
- Extreme fatigue: she regularly gets very fatigued, can't focus and doesn't want to do anything
- Long and sleep: she sleeps roughly 12hrs a day and still doesn't feel well rested after, frequently wakes up at night
- Joints ache: especially before a storm her knees will hurt
- Joint dislocation: due to the hEds joint dislocation happens sometimes

My theories:
- hEDS: I think this one is obvious, I think the joint paint and dislocation can at least by partially explained by this genetic disorder
- MCAS: I've read that this is a very common issue for people with eds. She gets very bad reactions to high histamine foods like alcohol and she regularly uses antihistamines to relieve her pain.
- Hypothyroid: This might be a stretch but after her mother got Lyme disease she developed Hashimoto's, this could be unrelated but I wonder if my girlfriend is predisposed to be hypothyroid since she presents a lot of the symptoms. I'm insisting she test for it.
- Nutritional deficiency: This one is more vague but I wonder if genetic/epigenetic changes have led to a distorted mineral balance or hormonal state that could be addressed with supplimentation
- Endotoxin: I think it could explain some of the waking up at night and bad mood
- Depression: She experienced significant depression in her life because of these medical issues

Drugs/Supplements she currently takes:
- Norethindrone: A progestin for birth control, I don't think it's great to take but she wants to be on it and said that it actually alleviated her symptoms so I assume some of the overlapping effects with Progesterone might be calming her nervous system in some way
- Cymbalta: Apparently this was the game changer for her and made the biggest change from her symptoms being unbearable to just bad. Significant reductions in pain, apparently SSRI's had no effect and apparently as a norepinephrine reuptake inhibitor this is commonly useful for hEds and works on nerve pain?
- Hydroxozine: Antihistamine, alleviates some of the pain, similar to benadryl but a bit better. Makes me suspect some sort of histamine intolerance like MCAS
- Magnesium: Recently prescribed, no noticeable benefit yet
- Vitamin B2: Recently prescribed, no noticeable benefit either
- Vitamin D: Takes it occasionally but she hasn't mentioned it helping, although she gets very little sunlight

I was thinking that Thyroid supplementation and switching to a low histamine diet could help but I'd appreciate any other ideas, anything that lowers serotonin probably helps too. These symptoms seem to be very common in people with Ehlers Danlos but I can't find much on the subject. I don't think ray has even touched on it in any of his videos or articles at least.
 

youngsinatra

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Low bioavailable copper. Check her serum copper AND ceruloplasmin. The latter is needed for collagen and elastin synthesis.

 

youngsinatra

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youngsinatra

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nogluten

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This one is about the absolute importance of bioavailable copper in relation to EDS.
I had this article saved a long with a couple dozen other decent resources, has there been any anecdotal benefits and should I buy her the MitoSynergy suppliment? I'm not concerned about the cost if it works.
 

Peatress

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By the time anyone gets to the point of being diagnosed with ehlers danlos they’ve been through many exploratory procedures and imagining. Multiple x-rays/ct scan/MRI and the use of contrast dye is now routine. Check medication history including the use of antibiotics? The chances are these symptoms are a result of energy failure due to some sort of poisoning which may have caused increased requirements for certain nutrients. Poor dietary choice is also a consideration but in my experience it’s more likely going to be due to some sort of poisoning be it radiation or drug, including vaccines. What action you take depends on what the poison is. This is just my opinion.
 

youngsinatra

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I had this article saved a long with a couple dozen other decent resources, has there been any anecdotal benefits and should I buy her the MitoSynergy suppliment? I'm not concerned about the cost if it works.
You could check out the facebook group „Bioavailable Copper“ for anecdotal successes.
I think bioavailable copper is even part of the famous Cusack Protocol for EDS.

I personally prefer Global Healing Cu1 over Mitosynergy, but both work. Part of the reason is that Global Healing‘s capsules don‘t seem to oxidize, even when I am not so careful with handling them, while MitoSynergy tends to oxidize more easily if not carefully handled (or if there are extreme temperature changes during transportation), but you always get your money replaced, so no worries. GH Cu1 is also cheaper.
 

Nokoni

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Excess TGF-β, an inflammatory cytokine, seems to be part of the problem with Marfan's type illnesses. Might be true in your case too. MD's prescribe losartan, an ARB, which is known to counteract excess TGF-β, to help control it. But simple taurine also inhibits TGF-β, so maybe try supplementing with taurine.

Defibron, from idealabsdc.com, is a remarkably effective anti-inflammatory that also has notably positive energy and mood effects. It might be worth a try. Just apply it topically, especially on the joints, including the neck and spine. Morning is best because it can interfere with sleep. Anti-histamines, especially cyproheptadine, can help with sleep if needed, as can the taurine.
 

Andrea Lucia

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My girlfriend and her mother both suffer from hEDS.
Both have seen lots of doctors but I'll mainly address my girlfriend.
I think her true underlying condition is just hEDS and it's comorbities, but doctors have diagnosed her with Fibromyalga, Pain??, and said her joints look arthritic in her late teens(she's 20 now). An important note is that all these issues really started to become more significant at puberty, making me think the rise of estrogen is reinforcing the issue.

Her symptoms:
- Migraines: she gets severe migraines a couple times per week that get worse with light exposure and are more common if she hasn't eaten is some time.
- Body pain: if under stress(mental of physical) she'll get flare ups where she'll experience pain(nerve pain?) in her whole body often accompanied by the migraine.\\
- Extreme fatigue: she regularly gets very fatigued, can't focus and doesn't want to do anything
- Long and sleep: she sleeps roughly 12hrs a day and still doesn't feel well rested after, frequently wakes up at night
- Joints ache: especially before a storm her knees will hurt
- Joint dislocation: due to the hEds joint dislocation happens sometimes

My theories:
- hEDS: I think this one is obvious, I think the joint paint and dislocation can at least by partially explained by this genetic disorder
- MCAS: I've read that this is a very common issue for people with eds. She gets very bad reactions to high histamine foods like alcohol and she regularly uses antihistamines to relieve her pain.
- Hypothyroid: This might be a stretch but after her mother got Lyme disease she developed Hashimoto's, this could be unrelated but I wonder if my girlfriend is predisposed to be hypothyroid since she presents a lot of the symptoms. I'm insisting she test for it.
- Nutritional deficiency: This one is more vague but I wonder if genetic/epigenetic changes have led to a distorted mineral balance or hormonal state that could be addressed with supplimentation
- Endotoxin: I think it could explain some of the waking up at night and bad mood
- Depression: She experienced significant depression in her life because of these medical issues

Drugs/Supplements she currently takes:
- Norethindrone: A progestin for birth control, I don't think it's great to take but she wants to be on it and said that it actually alleviated her symptoms so I assume some of the overlapping effects with Progesterone might be calming her nervous system in some way
- Cymbalta: Apparently this was the game changer for her and made the biggest change from her symptoms being unbearable to just bad. Significant reductions in pain, apparently SSRI's had no effect and apparently as a norepinephrine reuptake inhibitor this is commonly useful for hEds and works on nerve pain?
- Hydroxozine: Antihistamine, alleviates some of the pain, similar to benadryl but a bit better. Makes me suspect some sort of histamine intolerance like MCAS
- Magnesium: Recently prescribed, no noticeable benefit yet
- Vitamin B2: Recently prescribed, no noticeable benefit either
- Vitamin D: Takes it occasionally but she hasn't mentioned it helping, although she gets very little sunlight

I was thinking that Thyroid supplementation and switching to a low histamine diet could help but I'd appreciate any other ideas, anything that lowers serotonin probably helps too. These symptoms seem to be very common in people with Ehlers Danlos but I can't find much on the subject. I don't think ray has even touched on it in any of his videos or articles at least.
After reading everyone's comments, I can't help but say, you can try what they suggest, but you had it when you mentioned the thyroid. She can take all the supplements in the world, but without the thyroid functioning optimally or at least begin to function well enough to absorb the rest of the stuff. I would make that the priority and let the rest fall into place. Everything you wrote in your theory is accurate!

BTW, most of her symptoms were min, too. The only one I did not have was the joint falling out of place. The rest I had and I can't tell you how screwed up the doctors had me by putting me on Levothyroxine only. That was a huge no no. I suffered to the point of near death, until my son pointed me to Ray's work and got me going on cynomel & cynoplus, pregnenalone, progest-e and A, D, E, K and calcium. The pain I would suffer in my lower extremities where my muscle would cramp to deformity, excruciating pain I thought would never end. And so much more that I don't need to say here.

Anyway, I would point you back to your own feeling and get that thyroid taken care of and I would recommend cyproheptadine from Georgi's site, help with her serotonin, endotoxins and estrogen levels.

I wish you well....
 
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Nokoni

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until my son pointed me to Ray's work and got me going on cynomel & cynoplus, pregnenalone, progest-e and A, D, E, K and calcium.
This is a great point. Every bit of advice should start with "First do all the things that are right for pretty much everyone, then do the following if issues remain." Good diet, adequate thyroid support, necessary supplements. To be fair though it would be redundant for many on this board.
 
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nogluten

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After reading everyone's comments, I can't help but say, you can try what they suggest, but you had it when you mentioned the thyroid. She can take all the supplements in the world, but without the thyroid functioning optimally or at least begin to function well enough to absorb the rest of the stuff. I would make that the priority and let the rest fall into place. Everything you wrote in your theory is accurate!

BTW, most of her symptoms were min, too. The only one I did not have was the joint falling out of place. The rest I had and I can't tell you how screwed up the doctors had me by putting me on Levothyroxine only. That was a huge no no. I suffered to the point of near death, until my son pointed me to Ray's work and got me going on cynomel & cynoplus, pregnenalone, progest-e and A, D, E, K and calcium. The pain I would suffer in my lower extremities where my muscle would cramp to deformity, excruciating pain I thought would never end. And so much more that I don't need to say here.

Anyway, I would point you back to your own feeling and get that thyroid taken care of and I would recommend cyproheptadine from Georgi's site, help with her serotonin, endotoxins and estrogen levels.

I wish you well....
Thanks for the response, can I ask how much the treatment helped? I want to gauge what's possible. Her mother is on thyroxine only and from what I can tell still obviously hypothyroid. Is cynoplus good or a something like a 1.5:1 2:1 t4/t3 better? And is the calcium from food or supplements?
 

Andrea Lucia

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Thanks for the response, can I ask how much the treatment helped? I want to gauge what's possible. Her mother is on thyroxine only and from what I can tell still obviously hypothyroid. Is cynoplus good or a something like a 1.5:1 2:1 t4/t3 better? And is the calcium from food or supplements?
Yes, cynomel & cynoplus helped me immensely. I did it in small doses as suggested by Ray Peat. So on the bottles they indicate the amount of T4/T3 which helps me a lot. For the Cynoplus: it has Levothyroxin: 120mcg & Triiodothyronine: 30mcg and on the Cynomel: 25mcg. So I started with 1/4 ( I cut the tiny pill into 4) and I did this for two weeks, recording my vitals (temp. & pulse) and I took 1/4 T3 through out the day. I understand the T3 stays in the system for about 2-3 hours and let me tell you, I felt it when It was down, so I took another 1/4. I did the same with Ray's protest-e. I took it throughout the day when my body felt like it was dropping. Every two weeks, as long as my temp and pulse was below the normal level, I continued to up the dose by 1/4 and now, I take one full tab of cynoplus and cynomel and I will bite the cynomel throughout the day as needed. As for the calcium, I use NOW calcium powder as it is clean without any additives and I take it with almost every meal if I'm not drinking milk. Her Progesterone and Pregnenalone is just as helpful right out the gate, so I would be using those with the cynomel and cynoplus and of course, aspirin.
hope that helps.
 

Vileplume

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Yes, cynomel & cynoplus helped me immensely. I did it in small doses as suggested by Ray Peat. So on the bottles they indicate the amount of T4/T3 which helps me a lot. For the Cynoplus: it has Levothyroxin: 120mcg & Triiodothyronine: 30mcg and on the Cynomel: 25mcg. So I started with 1/4 ( I cut the tiny pill into 4) and I did this for two weeks, recording my vitals (temp. & pulse) and I took 1/4 T3 through out the day. I understand the T3 stays in the system for about 2-3 hours and let me tell you, I felt it when It was down, so I took another 1/4. I did the same with Ray's protest-e. I took it throughout the day when my body felt like it was dropping. Every two weeks, as long as my temp and pulse was below the normal level, I continued to up the dose by 1/4 and now, I take one full tab of cynoplus and cynomel and I will bite the cynomel throughout the day as needed. As for the calcium, I use NOW calcium powder as it is clean without any additives and I take it with almost every meal if I'm not drinking milk. Her Progesterone and Pregnenalone is just as helpful right out the gate, so I would be using those with the cynomel and cynoplus and of course, aspirin.
hope that helps.
Hey Andrea, do you mean you take 1 tablet of cynoplus and 1 tablet of cynomel?
 

Kray

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You could check out the facebook group „Bioavailable Copper“ for anecdotal successes.
I think bioavailable copper is even part of the famous Cusack Protocol for EDS.

I personally prefer Global Healing Cu1 over Mitosynergy, but both work. Part of the reason is that Global Healing‘s capsules don‘t seem to oxidize, even when I am not so careful with handling them, while MitoSynergy tends to oxidize more easily if not carefully handled (or if there are extreme temperature changes during transportation), but you always get your money replaced, so no worries. GH Cu1 is also cheaper.
Do you still take this supplement? I'm wondering if it's something to take long-term. Don't find much on this brand compared to Mito. Thanks for any help.
 

youngsinatra

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Do you still take this supplement? I'm wondering if it's something to take long-term. Don't find much on this brand compared to Mito. Thanks for any help.
I changed my mind on this supplement after it failed to improve my labs (it did nothing) after close to 6 months on it. I spent a small fortune on this product unfortunately..
 

Kray

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I changed my mind on this supplement after it failed to improve my labs (it did nothing) after close to 6 months on it. I spent a small fortune on this product unfortunately..
Sorry to hear, but thanks for your feedback. Did you decide on nothing to replace it, or finally consider using the alternative (Mito)? Wanting to try good copper source for gray hair, overall health benefits.
 

youngsinatra

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Sorry to hear, but thanks for your feedback. Did you decide on nothing to replace it, or finally consider using the alternative (Mito)? Wanting to try good copper source for gray hair, overall health benefits.
Oh I tried Mito first and then Global Healing.

After about 1 year where supplements (Copper-2-bisglycinate, MitoSynergy, Global Healing) and copper-rich foods did nothing to my copper status (and actually became intolerant to them — got liver pain and felt off after taking them) I started taking thyroid (T4/T3) and that finally raised my copper out of deficient into the normal range.

I think poor hepatic utilization and export is a problem with copper. I think my liver contains plenty of copper, but couldn’t utilize it.
 

Kray

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Oh I tried Mito first and then Global Healing.

After about 1 year where supplements (Copper-2-bisglycinate, MitoSynergy, Global Healing) and copper-rich foods did nothing to my copper status (and actually became intolerant to them — got liver pain and felt off after taking them) I started taking thyroid (T4/T3) and that finally raised my copper out of deficient into the normal range.

I think poor hepatic utilization and export is a problem with copper. I think my liver contains plenty of copper, but couldn’t utilize it.
Wow, very interesting! Would you feel free to share the thyroid product you are using, and what schedule/dosing you found to be helpful? How long before you noticed improvement?
 

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