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JazTee

Member
Joined
Aug 25, 2020
Messages
20
Hi all,

I recently posted a thread here: (Feeling Terrible at 22) where I basically listed all my symptoms and recieved some amazing advice for my metabolism, overall dietary health etc. I suggest reading this post first to get an insight into my lifestyle and health.
(TL-DR; I basically starved & binged most of my childhood, ****88 up my metabolism, ate 95% PUFA diet, over-exercised & under-exercised, traumatic childhood, basically the recipe for disaster).

I went to the hospital today (rheumatology dep) to see about my severe joint pain and fatigue. The Dr did a very thorough physical examination and has diagnosed me with Hypermobile Ehlers-Danlos Syndrome. I have also had bloods taken to double check the inflammation they found in my blood 6 weeks ago - just to see if I have an inflammatory condition or something ontop of the hEDS. I have spent the past 2 hours doing research into the condition and, yeah, all of my symptoms match up. It's nice to know that I'm not just being sensitive and that my pain is actually real and I do have a condition that causes me to be exhausted and that I'm not just lazy.

Though, I can't find much information about its treatment. It's a connective tissue disorder - so I'm just wondering, should I try increasing my gelatine/collagen intake to see if it'll help? I'm also on the way of healing my metabloism at the same time so I am eating about 2,000+ calories a day and trying really hard to nourish my body and not over-excercise. So I have a lot to think about in terms of my health at the moment. Kinda freaking out a bit, but trying to use this diagnosis as direction and motivation and not a burden.

If anyone has any suggestions about what I could possibly do to help my hEDS that would be great. I really love hiking and walking - and I don't want to get to the point where I can't walk anymore because I'm already suffering with my joints and energy and currently spending 2-3 days in bed or on the sofa every week. I really need to fix this and I need to be active and healthy - just as we all want to on here. I'm extremely nervous that I am more prone to developing arthritis and could end up with arthritis in my 30s. So kind of feel a lot of pressure to fix myself while I'm in my 20s.

Thanks so much everyone.

Have a great day!

-Jaz
 

dilantinoid

Member
Joined
Mar 27, 2015
Messages
308
I have this too. Not the most severe form.

Have you tested TGB BETA 1 & MMP9 levels ?

minocycline helps me
 

5-HTupid

New Member
Joined
Sep 16, 2016
Messages
2
Hi Jaz,

I'll offer my own experience in case it might help you. I was diagnosed with hEDS a while ago after many years of chronic fatigue, pain, gut problems, orthostatic intolerance, etc.

B1/Thiamine has been a huge help and I wish, wish, wish I had experimented with high doses (500mg+ daily) years ago. I guess I never suspected a deficiency as I always took some kind of B complex supplement, but apparently I need hundreds of times the official RDA (which is about a mg). I add the pure powder to my drinks throughout the day, as the whole dose in one go can irritate my stomach. I've found this makes a big difference to my energy levels and crucially has, I believe, allowed me to tolerate thyroid. Having known I was "sub-clinically" hypothyroid for as long as I've been unwell, I first experimented with thyroid supplementation years ago and persisted with it over the years, but any more than a small amount always made me feel worse, sometimes much worse. The vitamin deficiency seems to have been the problem – I interpret that my adverse reactions to thyroid were due to increased metabolism creating too great a need for B1 that I didn't have.

This experience has rammed home the dangers of supplementing with thyroid in the presence of nutrient deficiencies, but has also finally confirmed to me first-hand that thyroid really is as much of a heavy lifter as I'd always read it was. I am still increasing my dose – slowly – with great results. Not cured by any means (I also have MCAS and have to be very careful to avoid triggers) but no longer debilitated and still improving.

Progesterone is certainly very helpful, I take it during my luteal phase and on the occasions that I've been without it, my PMS is dramatically worse. It seems to me that EDS people are very estrogen dominant in general.

K2 is another thing that seems to help. If I remember correctly, Peat has recommended K supplementation and a little DHEA for EDS. He has said that in elderly people, DHEA can help rebuild the connective tissue.

You probably are more prone to developing arthritis and I would try not to worry too much about this. The great thing about viewing health from a "bioenergetic" perspective is seeing that disease states are not fixed or irreversible. True, the environment is very bad and in reality chronic conditions are most often not reversed, but physiology is fluid and imo just understanding this can go a long way to reduce the sense of helplessness that often accompanies diagnosis and keeps people sick.
 

Recoen

Member
Joined
Jun 8, 2020
Messages
605
I was diagnosed with hEDS, POTs, and MCAS among other things. The things I described in your other thread have helped me the most.
 

Elie

Member
Joined
Oct 30, 2015
Messages
351
Hi @JazTee, this was posted close to a year ago. I wonder if you tried the suggestion of high dose thiamin from @5-HTupid ?

Hi @5-HTupid , thank you for your suggestions. How much DHEA and Progesterone would you recommend for post menstrual woman?

thanks
 

5-HTupid

New Member
Joined
Sep 16, 2016
Messages
2
Hi @drk.

My experience with DHEA is limited but it seems that up to 5mg per day would be a safe starting point. I believe it was 15mg that Peat said could be beneficial in older people.

As for progesterone, I don't know what would be a standard/average therapeutic dose for a post menopausal woman, but a simple progesterone/tocopherol mixture like Progest E should be safe to experiment with quite freely, dose wise. Just bear in mind that it can had a sedative effect in higher doses (no problem if you take before bed) and that large amounts of vit E can antagonise vit K. It's good to have a regular break from the progesterone (to reset your tolerance, basically) even if you aren't menstruating. Personally I probably use (for half my cycle) up to 150mg a day topically, which is about 40 drops of Progest E.
 

Peatness

Member
Joined
Oct 12, 2020
Messages
10,091
I came across this blog about Stephanie Seneff's work on glyphosate. In this passage quoted in the blog Seneff associates glyphosate with collagen damage

I feel confident that glyphosate is messing up collagen,” Seneff says. “Collagen has a beautiful triple helix structure, which gives it really special properties of tensile strength and flexibility to hold water. Collagen has long, long sequences called GXY, GXY, GXY, where every third amino acid is a glycine. Those glycines hook together to form that triple helix.
There are people who have mutations in those glycines that cause joint and bone diseases, and I think glyphosate is causing that. Ehlers-Danlos syndrome is associated with glycine mutations in collagen, and there’s an increase in the prevalence of that syndrome recently.
Of course, you have many more people getting hip replacement surgery, and people have back issues, back pain and shoulder surgery, knee and foot problems. All these different problems with the joints, I suspect, are being caused by misfolded collagen because of glyphosate messing it up.”

 

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