Connective Tissue Disorders/Ehler Danlos, the ECM and Chronic Issues - MCAS, CIRS, POTS, CFS, IBS, Dystonias, Pain, Proprioceptive Disorders, ETC.!

[Persej]

I remember that Gaby mentioned that coffee gave her pain:

With time, I developed arthritis symptoms after coffee due to the aflatoxins. It didn't happened with organic aflatoxin-free coffees though. The aflatoxins create cross reaction with gluten-like proteins if I remember correctly.

Maybe it's aflatoxins and not caffeine. In my father's village many people have bone pains and that place is famous for high humidity which stimulates mold which creates aflatoxins.

 

[Fluffy]

I remember that Gaby mentioned that coffee gave her pain:



Maybe it's aflatoxins and not caffeine. In my father's village many people have bone pains and that place is famous for high humidity which stimulates mold which creates aflatoxins.

It could be, thought I drink organic it’s already expensive and I’m certain mycotoxin free coffee is even more so, so I’ll just quit.

And this from the article I posted caffeine might just simply be nasty!

Exposure of the fibroblasts to different concentrations of the alkaloid led to the inhibition of the newly synthesized collagen by 48.04% (2.38% ± SD; n=3), 72.90% (3.60% ± SD; n=3), and 92.12% (3.81% ± SD; n=3), respectively

 

[Persej]

Since you mentioned coffee, I tried today to drink again instant coffee with milk and to pay attention to how I would feel. I felt some positive effect on my mind that I don't feel when I drink plain coffee, and it had a strong diuretic effect, that I also don't have when I drink plain coffee. This was happening before, but I never paid attention to it. So I searched to find if it activates PPAR-α, and it does:

Caffeic and Chlorogenic Acids Synergistically Activate Browning Program in Human Adipocytes: Implications of AMPK- and PPAR-Mediated Pathways - PubMed

Caffeic acid (CA) and chlorogenic acid (CGA) are phenolic compounds claimed to be responsible for the metabolic effects of coffee and tea consumption. Along with their structural similarities, they share common mechanisms such as activation of the AMP-activated protein kinase (AMPK) signaling...

pubmed.ncbi.nlm.nih.gov

So it seems that polyphenols from coffee can also activate PPAR-α, but there is a problem with bioavailability with plain coffee. Just like with green tea where I also noticed the diuretic effect when taken with milk.

Cinnamic acid, found in cinnamon, also activates PPAR-α:

Cinnamic acid activates PPARα to stimulate Lysosomal biogenesis and lower Amyloid plaque pathology in an Alzheimer's disease mouse model - PubMed

The response of the lysosomes, the waste clearance machinery of the cell, to different environmental stimuli is coordinated by a gene network with a master regulator Transcription factor EB (TFEB) at the core. Disruption of multiple facets of the lysosomal and autophagic network has been linked...

pubmed.ncbi.nlm.nih.gov

 

[Gaby]

instant coffee with milk

Dairy products are DEADLY for people with conjonctive tissue anomalies to the extent that if they persist in consuming those products, they will not recover their health. It also favors an ill psychic hygiene. We came to call it "the dairy demon" as mirth. I noticed it actually depicted the reality pretty good : externally it looks like an uncontrolled addiction, but the energy favored is that one of "take over" or more spirit attachments. Normalization of behavior often is seen with the withdrawal of dairy.

People in this spectrum, and it's very evident in Ehler Danlos, are like the veritable canary in the coal mine.

Not saying this for you, but in general, synthesizing decades of experience witnessing the pattern among vulnerable people. Dairy is the one subject that you can always expect defenders and their multiple narratives to explain it's okay to consume it. Obviously, they're genetically resilient to it, or not: Did Civilization Arise to Deliver a Fix?

 

[Persej]

Dairy products are DEADLY for people with conjonctive tissue anomalies to the extent that if they persist in consuming those products, they will not recover their health. It also favors an ill psychic hygiene. We came to call it "the dairy demon" as mirth. I noticed it actually depicted the reality pretty good : externally it looks like an uncontrolled addiction, but the energy favored is that one of "take over" or more spirit attachments. Normalization of behavior often is seen with the withdrawal of dairy.

People in this spectrum, and it's very evident in Ehler Danlos, are like the veritable canary in the coal mine.

Not saying this for you, but in general, synthesizing decades of experience witnessing the pattern among vulnerable people. Dairy is the one subject that you can always expect defenders and their multiple narratives to explain it's okay to consume it. Obviously, they're genetically resilient to it, or not: Did Civilization Arise to Deliver a Fix?

I understand. My logic is if dairy can help with the absorption of polyphenols, and I can feel the effect of it, then I can go and try other things to see what else can be used to improve the absorption of polyphenols and give me the same effect. I plan to do that, but for now I use dairy as a reference point, because I don't feel the same effect with plain water.

 

[Yas]

I've been taking PEA for a couple of weeks now and what I can say about it so far is that it is certainly energizing. I am having a bit of trouble sleeping with it and, unfortunately, I bought one that has a high dose in just one capsule so I can't reduce the dosage. What I'm trying now is to take breaks from it to see if that works better, otherwise I think I'll get one with a lower dosage per capsule.

I mention this because perhaps it is better to buy one with a lower dose per capsule so you can manage the dosage better at the beginning at least.

 

[Mrs. Peel]

I've been taking PEA for a couple of weeks now a

I'm on my second bottle, and I can't really say anything about an effect. The bottle says 600 mg but it says serving size is two capsules, so I guess each capsule is 300 mg. I'm taking the EuroMedica brand. I've been taking one capsule on an empty stomach first thing in the AM, then the second capsule between lunch and dinner, about 4:30 PM. One day I tried taking two capsules in the AM, and all I noticed later was a bit of unexplained agitation. Sometimes I skip a day or two if I don't have time to wait a half-hour before eating in the morning, and I won't take any at all. I also tried not the second pill in the afternoon, but my sleep is whacked no matter what I take (or don't).

Maybe I need some Acetyl-L-carnitine also.

 

[Cassis]

I came across a functional medicine doctor who recommended taking L-theanine to help with sleep, but not on a daily basis. I haven't tried it yet; I'm waiting because I occasionally have a sleepless night for no apparent reason... to be continued!

 

[Persej]

I tried instant coffee with coconut milk and it didn't work. I will have to try other things.

I've been taking PEA for a couple of weeks now and what I can say about it so far is that it is certainly energizing. I am having a bit of trouble sleeping with it and, unfortunately, I bought one that has a high dose in just one capsule so I can't reduce the dosage. What I'm trying now is to take breaks from it to see if that works better, otherwise I think I'll get one with a lower dosage per capsule.

I mention this because perhaps it is better to buy one with a lower dose per capsule so you can manage the dosage better at the beginning at least.

You could try taking just a part of the capsule. Not everything needs to be protected from digestive system. This is what they recommend for PEA powder:

Blend It into Your Morning Smoothie: Start your day on a high note! Mixing PEA powder into your morning smoothie is one of the easiest and most palatable ways to consume it. Whether your smoothie is fruit-based or green, PEA powder is virtually tasteless and won't alter the flavor—just the health benefits.

Stir It into Your Coffee or Tea: For many, the day doesn’t start without a cup of coffee or tea. Add a health kick to your caffeine ritual by stirring in a dose of PEA powder. It dissolves well and is a seamless way to incorporate it into your routine without much effort.

Upgrade Your Post-Workout Shake: After a grueling workout, your body needs all the help it can get to recover. Adding PEA powder to your post-workout shake can support your body’s natural inflammatory response, potentially reducing soreness and aiding recovery.

Mix with Yogurt or Applesauce: Looking for an afternoon snack that soothes and nourishes? Mix PEA powder into a bowl of yogurt or applesauce. This combination is perfect for those who prefer not to drink their supplements and offers a texture-friendly alternative.

 

[Cordillera]

Thank you Gaby for the above information which makes total sense to me now. I've pondered on what you've wrote above and I sense that, and I hope to be right this time, during all these years I've got so used to having oftentimes heightened anxiety levels that I've mistaken it for OCD tendencies, mostly thoughts related and much less behavior related.

The below excerpt from your previous message rings a loud bell for me, wondering for how many of our members this could apply as well:

I just wanted to thank you for this link between the psychiatric and psychological aspects of Ehlers-Danlos syndrome. It makes a lot of sense to me in relation to the patterns of the people who take my Qi Gong and Tai Chi classes, and it also helps me focus the support I can offer them with these exercises and with Somatic Experiencing.

 

[Cordillera]

I have been on guard for so long, which alone is very exhausting, I’m tired a lot and have days where my functionality is limited so I do very little- as little as possible anyway. I don’t beat myself up about it or feel useless often anymore either, that just makes it all worse. I’m doing the best with what I’ve got.

I experience something very similar. I try to be more compassionate with myself on those days when I feel low on energy and mentally confused. I have good days and bad days. I try to use the good days to complete my pending tasks and connect with my friends and family. On bad days, I give myself more time and focus more on my body awareness, to recognize the parts that don't feel so good so I can take care of them, and to recognize the parts that are better so they can help me emerge from the lethargy with a little activation of the sympathetic nervous system. I try not to push myself to do what I can't, but I do things that take me out of my dorsal parasympathetic activation. So I do the cleaning, wash the dishes, make my bed, do gentle Qi Gong movements, gentle somatic activations, etc.

What also helps me is using "positive stress" agents that facilitate a dopaminergic "reset." These include fasting or cold showers (or just wetting my face and arms). They also recommend the Wim Hof breathing method.