Connective Tissue Disorders/Ehler Danlos, the ECM and Chronic Issues - MCAS, CIRS, POTS, CFS, IBS, Dystonias, Pain, Proprioceptive Disorders, ETC.!
- Thread starter Gaby
- Start date
FWIW, I've been taking it on an empty stomach and/or when I eat my bacon.
You can find it on Amazon:
Nullure Palmitoylethanolamide Pea Supplement | 400 mg Capsule | Pure Pea | Third-Party Tested in Germany | Vegan | No additives | Anti-inflammatory · Pain Management | 90 Capsules | Made in Barcelona : Amazon.co.uk: Health & Personal Care
Nullure Palmitoylethanolamide Pea Supplement | 400 mg Capsule | Pure Pea | Third-Party Tested in Germany | Vegan | No additives | Anti-inflammatory · Pain Management | 90 Capsules | Made in Barcelona : Amazon.co.uk: Health & Personal Care
www.amazon.co.uk
Ah, sorry - misread. Can't find any with the serrapeptase included. You can buy that seperatly.
Str!ke
Jedi
I'd like your thoughts on my brother's case. We would greatly appreciate your help.
My brother is 37 years old. He’s underweight
He’s had this problem for about 7 or 8 years and has kept worsening.
Symptoms:
If he drinks water, he feels fatigue
If he pees, he recently mentioned his heart rate increases and then crashes. So, I think Dysautonomia
If he drinks milk, he feels an increased pressure of needing to go to the bathroom, maybe almond milk doesn’t.
So, he can’t drink many liquids and is dehydrated. Only drinks about 2 glasses of coconut water per day.
He’s had 2 leg ulcers for about 2 years, that is only closing more recently. His ulcers used to not hurt, but now they do. The ulcers get more uncomfortable and painful whenever he eats meat or eggs; it’s worse when it has salt, although pistachios, which have salt, don’t make him hurt as much as well as with fruits. So, now his food is low in salt. Previously, when he walked, they hurt a lot. He has mentioned that if he drinks more water, his pain in the ulcers lessen.
Before this, he’s had OCD for more years that has also kept worsening to a point it severely disrupts his daily life. It’s such that it’s not uncommon for him to be in the bathroom for 8-12 hours severely anxious and fatigued, and traumatic with mind and body unstable and with nightmares.
Moving his body is a very difficult task, he can’t know well his spaces and distances surrounding him. And his anxiety is very very high and his nervous system is dysregulated.
He also feels that he doesn’t have energy on his brain and feels exhausted.
So, he tried MCT oil, ketones for his brain -- without a ketogenic diet, for a few days if not a few weeks, and still had severe OCD and spending hours in the bathroom, but did mention it felt like another energy, more subtle. And that he would try it again at some point.
He has a lot of itching, I think it’s also related to OCD, called excoriation. That or related to MCAS, because I gave him once one capsule of Histaquel and Bromelain and had mild itching, however he can’t try it again to know whether it will have the same effect again. Because of this, it makes me think it's related to MCAS.
But he has also mentioned that if he takes more water he feels less pain on his ulcers and less itchiness on his skin. For example, when he ate fried potatoes with salt, he had much more trouble on his skin itchiness. So he drinks coconut water. He stopped eating pork, maybe because of the high salt it has.
He used to have, or still have -- I’ve been unable to ask him, dermatographism prior to these years being here.
He also has itching of the eyes and tears that obstaculize opening his eyes.
He has mentioned that before his eyes start tearing, his stomach is very tense, as if that tension is released by tearing his eyes.
He also complains of a lot of fatigue and crashes during the day. So, I think he has CFS
[Although, I’m not sure how he feels when he’s awake and eating, while we’re sleeping, but most likely very bad.]
I think lowering his histamine could lower his CFS, unless it has another cause.
He’s always been a good sleeper, meaning he has no troubles falling into sleep and sleeping all what he needs. But I’ve noticed recently, it seems to me that he’s not sleeping well nor the amount that he needs.
Diet:
His diet, currently, is about 2 or 3 tacos of bistec with 2 tacos of avocado and salsa. Sometimes more tacos, sometimes less. Maybe cheese sometimes. With 2 glasses of Cranberry juice and Coconut water. Almost everyday two slices of breads with honey or strawberry jam.
He has noticed that when he eats fruits or nuts he has less anxiety for a bit and less pain in the ulcers, but then feels he needs the meat for sustained energy.
He feels better if he doesnt eat chocolate, kombucha.
He has yet to try the ketogenic diet, but he knows that that is on his mind.
Things that are laxative for him: is maybe oats, wheat or seed oils. However, he can eat certain cookies without trouble and doughnuts. Granola is laxative for him. Yogurt gives him more pressure to urinate.
We don’t know if he has SIBO. I think he does or if he doesn't, then he has dysbiosis, because he’s always had problems on his skin. He’s starting to try to eat SIBO Yogurt from William Davis with L. Gasseri, B. Coagulans, B. Subtilis without the L. Reuteri because it can produce more histamine, also just recently I found that B. Subtilis can produce histamine, so we’ll take that out. Or maybe he can’t take this type of yogurt. I’m not sure because he mentioned milk and yogurt gives him more pressure to go to the bathroom, but when he ate this SIBO yogurt, which is a smaller quantity, he didn’t have troubles with the bathroom.
Maybe he will try at some point a new method for SIBO which is taking lactulose titrated slowly (because it can have a laxative effect) until you reach 10g in two divided doses to acidify the gut and change the microbiome positively. They say to do it for 3 months. Preferably with immunoglobulins to bind to the die-off toxins and PHGG fiber to aid in changing the microbiome.
So maybe SIBO is where the MCAS problems are originating from. Either that, or from mold exposure from living in a house with water leaks. And for that there is a doctor, Andrew Campbell, that claims that his method is the one that works unlike Shoemakers’ and others that use binders and more tests. His method consists of stopping the mold exposure, itraconazole 100mg BID, 8 supplements from detoxpure.com, a low histamine diet and retesting in 6 months. He says the treatment lasts 6 months, but that sometimes people take 1 year or more.
He’s only taking one capsule of bromelain (500mg) as antihistaminic, antiinflammatory, to reduce edema or increase circulation.
There are many things he could take (antihistaminics, DAO enzyme, supplements) and diet changes (low histamine diet and/or ketogenic diet), but for some reason, he doesn't yet want to until the moment comes. He suffers too much, it pains us to see him like this and that we are unable to reach him to help him.
So, we don’t know how to reach him and help him and my mother as well – she’s still struggling with many of the infections and metabolic dysfunction, inflammation, dysbiosis/chronic diarrhea, insomnia, atherosclerosis (unsure if it has gotten better), fatigue, hypertension – she’ll have a consultation with Dr. Cheng, so maybe you’ll know how that goes and whether she gets better -- I hope so.
My brother is 37 years old. He’s underweight
He’s had this problem for about 7 or 8 years and has kept worsening.
Symptoms:
If he drinks water, he feels fatigue
If he pees, he recently mentioned his heart rate increases and then crashes. So, I think Dysautonomia
If he drinks milk, he feels an increased pressure of needing to go to the bathroom, maybe almond milk doesn’t.
So, he can’t drink many liquids and is dehydrated. Only drinks about 2 glasses of coconut water per day.
He’s had 2 leg ulcers for about 2 years, that is only closing more recently. His ulcers used to not hurt, but now they do. The ulcers get more uncomfortable and painful whenever he eats meat or eggs; it’s worse when it has salt, although pistachios, which have salt, don’t make him hurt as much as well as with fruits. So, now his food is low in salt. Previously, when he walked, they hurt a lot. He has mentioned that if he drinks more water, his pain in the ulcers lessen.
Before this, he’s had OCD for more years that has also kept worsening to a point it severely disrupts his daily life. It’s such that it’s not uncommon for him to be in the bathroom for 8-12 hours severely anxious and fatigued, and traumatic with mind and body unstable and with nightmares.
Moving his body is a very difficult task, he can’t know well his spaces and distances surrounding him. And his anxiety is very very high and his nervous system is dysregulated.
He also feels that he doesn’t have energy on his brain and feels exhausted.
So, he tried MCT oil, ketones for his brain -- without a ketogenic diet, for a few days if not a few weeks, and still had severe OCD and spending hours in the bathroom, but did mention it felt like another energy, more subtle. And that he would try it again at some point.
He has a lot of itching, I think it’s also related to OCD, called excoriation. That or related to MCAS, because I gave him once one capsule of Histaquel and Bromelain and had mild itching, however he can’t try it again to know whether it will have the same effect again. Because of this, it makes me think it's related to MCAS.
But he has also mentioned that if he takes more water he feels less pain on his ulcers and less itchiness on his skin. For example, when he ate fried potatoes with salt, he had much more trouble on his skin itchiness. So he drinks coconut water. He stopped eating pork, maybe because of the high salt it has.
He used to have, or still have -- I’ve been unable to ask him, dermatographism prior to these years being here.
He also has itching of the eyes and tears that obstaculize opening his eyes.
He has mentioned that before his eyes start tearing, his stomach is very tense, as if that tension is released by tearing his eyes.
He also complains of a lot of fatigue and crashes during the day. So, I think he has CFS
[Although, I’m not sure how he feels when he’s awake and eating, while we’re sleeping, but most likely very bad.]
I think lowering his histamine could lower his CFS, unless it has another cause.
He’s always been a good sleeper, meaning he has no troubles falling into sleep and sleeping all what he needs. But I’ve noticed recently, it seems to me that he’s not sleeping well nor the amount that he needs.
Diet:
His diet, currently, is about 2 or 3 tacos of bistec with 2 tacos of avocado and salsa. Sometimes more tacos, sometimes less. Maybe cheese sometimes. With 2 glasses of Cranberry juice and Coconut water. Almost everyday two slices of breads with honey or strawberry jam.
He has noticed that when he eats fruits or nuts he has less anxiety for a bit and less pain in the ulcers, but then feels he needs the meat for sustained energy.
He feels better if he doesnt eat chocolate, kombucha.
He has yet to try the ketogenic diet, but he knows that that is on his mind.
Things that are laxative for him: is maybe oats, wheat or seed oils. However, he can eat certain cookies without trouble and doughnuts. Granola is laxative for him. Yogurt gives him more pressure to urinate.
We don’t know if he has SIBO. I think he does or if he doesn't, then he has dysbiosis, because he’s always had problems on his skin. He’s starting to try to eat SIBO Yogurt from William Davis with L. Gasseri, B. Coagulans, B. Subtilis without the L. Reuteri because it can produce more histamine, also just recently I found that B. Subtilis can produce histamine, so we’ll take that out. Or maybe he can’t take this type of yogurt. I’m not sure because he mentioned milk and yogurt gives him more pressure to go to the bathroom, but when he ate this SIBO yogurt, which is a smaller quantity, he didn’t have troubles with the bathroom.
Maybe he will try at some point a new method for SIBO which is taking lactulose titrated slowly (because it can have a laxative effect) until you reach 10g in two divided doses to acidify the gut and change the microbiome positively. They say to do it for 3 months. Preferably with immunoglobulins to bind to the die-off toxins and PHGG fiber to aid in changing the microbiome.
So maybe SIBO is where the MCAS problems are originating from. Either that, or from mold exposure from living in a house with water leaks. And for that there is a doctor, Andrew Campbell, that claims that his method is the one that works unlike Shoemakers’ and others that use binders and more tests. His method consists of stopping the mold exposure, itraconazole 100mg BID, 8 supplements from detoxpure.com, a low histamine diet and retesting in 6 months. He says the treatment lasts 6 months, but that sometimes people take 1 year or more.
He’s only taking one capsule of bromelain (500mg) as antihistaminic, antiinflammatory, to reduce edema or increase circulation.
There are many things he could take (antihistaminics, DAO enzyme, supplements) and diet changes (low histamine diet and/or ketogenic diet), but for some reason, he doesn't yet want to until the moment comes. He suffers too much, it pains us to see him like this and that we are unable to reach him to help him.
So, we don’t know how to reach him and help him and my mother as well – she’s still struggling with many of the infections and metabolic dysfunction, inflammation, dysbiosis/chronic diarrhea, insomnia, atherosclerosis (unsure if it has gotten better), fatigue, hypertension – she’ll have a consultation with Dr. Cheng, so maybe you’ll know how that goes and whether she gets better -- I hope so.
Has he actually seen a doctor or had any tests performed for everything you describe?
EmeraldR
The Living Force
The pattern of symptoms—especially autonomic fluctuations triggered by eating, drinking, and bladder activity—strongly supports a diagnosis of dysautonomia.
A tilt table test, autonomic function testing, and evaluation for underlying causes (e.g., autoimmune, connective tissue disorders like Ehlers-Danlos) might be recommended next steps.
Str!ke
Jedi
Thank you very much for your answers. Unfortunately, he's unable to see a doctor, psychiatrist, try therapies or supplements nor has any tests performed, he says until the moment comes. I want to do an online consultation about his case, but he doesn't want to. I'd still do it regardless, but they both tell me to wait until it's time. So, it ocurred to me to ask you for your help.
I do think he has dysautonomia, but could that be from MCAS/histamine intolerance? I can't do the tests for hypermobility on him; I do have some laxity on mine, but I don't think it's to the point of hypermobility. I'd like to think he doesn't have overt hypermobility either.
I do think he has dysautonomia, but could that be from MCAS/histamine intolerance? I can't do the tests for hypermobility on him; I do have some laxity on mine, but I don't think it's to the point of hypermobility. I'd like to think he doesn't have overt hypermobility either.
That's very sweet of you, but you can only lead a horse to water.
It never works when a person doesn't want to get help. I think half of his problems or more might be resolved if he ditches the dairy and eats a low histaminic/MCAS friendly diet. And since he doesn't want to, then perhaps the core issue here is that he's really addicted to his pain and suffering.
Usually, you start with steps towards healing the body because it's the most feasible thing to do. In his case, he might benefit from doing cognitive behavioral therapy first or similar, so he can finally start taking care of his body.
Wow! Thank you Gaby for condensing and posting all of this information and to all others who have contributed. I've displayed at least 75% of the symptoms listed here. The few that stand out are:
1. "West point neck" or straight neck: this was just confirmed by x-ray from my chiropractor. I do not suffer from hypermobility, but I'll be careful nonetheless. I haven't had issues with chiropractic care in the past.
2. Being simultaneously hot and cold: I always feel cold, especially my hands and feet, yet according to my acupuncturist, who I firmly believe is one of the good ones, I have excess heat in both my chest and head. This was also apparent on my tongue which shows signs of excess heat and dampness/cold which left her somewhat perplexed. I have an aversion to cold weather and cannot tolerate any spicy foods.
3. Psychic, sports, and stumbling - "The proprioceptive paradox": I was a fairly gifted athlete growing up, yet always had terrible balance. I quickly excelled at every sport I picked up, but was beyond pathetic at skateboarding, rollerblading, and ice skating. In high school, as a goalkeeper, I knew I has some psychic gift - long before I even believed in such things - simply because when I was "zoned in", I frequently knew where the ball was going before it happened. It made me one of the top three goalies in the state, and my team was nationally ranked. The other two goalies went on to get signed onto MLS junior teams. Pain, injuries, and fatigue brought my career to an abrupt end. Womp womp.
4. Recent covid hospitalization
I wish I had read this thread earlier, as it gives great context to the C's hint that "genetics" made me vulnerable to being severely impacted by Covid. I'll add PEA to my morning bowl of supplements and report back.
1. "West point neck" or straight neck: this was just confirmed by x-ray from my chiropractor. I do not suffer from hypermobility, but I'll be careful nonetheless. I haven't had issues with chiropractic care in the past.
2. Being simultaneously hot and cold: I always feel cold, especially my hands and feet, yet according to my acupuncturist, who I firmly believe is one of the good ones, I have excess heat in both my chest and head. This was also apparent on my tongue which shows signs of excess heat and dampness/cold which left her somewhat perplexed. I have an aversion to cold weather and cannot tolerate any spicy foods.
3. Psychic, sports, and stumbling - "The proprioceptive paradox": I was a fairly gifted athlete growing up, yet always had terrible balance. I quickly excelled at every sport I picked up, but was beyond pathetic at skateboarding, rollerblading, and ice skating. In high school, as a goalkeeper, I knew I has some psychic gift - long before I even believed in such things - simply because when I was "zoned in", I frequently knew where the ball was going before it happened. It made me one of the top three goalies in the state, and my team was nationally ranked. The other two goalies went on to get signed onto MLS junior teams. Pain, injuries, and fatigue brought my career to an abrupt end. Womp womp.
4. Recent covid hospitalization
I wish I had read this thread earlier, as it gives great context to the C's hint that "genetics" made me vulnerable to being severely impacted by Covid. I'll add PEA to my morning bowl of supplements and report back.
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