Body-wide endothelial inflammation/damage

[artist]

@artist do you have a recent complete blood count?

Im not sure, the only doctors I’ve been able to see recently have been ER because my insurnace sucks and they canceled my doctors appointment, the first I’ll see a proper doctor in over a year will be at the end of this month depending on what you’re curious about they did run the basic blood panel at the ER? I think I have access to those

 

[artist]

Have you looked into EDS (Ehlers Danlos Syndrome) ? I finally found out I some how "acquired" the EDS somehow. This can happen with a virus/Lyme or whatever. Of course there's a genetic component. But people can get the symptoms and when there is hypo metabolism it's hard to get out of.

I am interested in that..The fact that I already had MCAS and got POTS/collagen problem at the same time is pretty coincidental. How did the EDS manifest for you? I actually have always had hypermobile joints but I’m not sure how it works and whether that would be related

 

[artist]

That's amazing the lactoferrin is working. I bought some but my anxiety has prevented me from trying it. Garrett Smith was marketing the crap out of it to help solve toxic bile/liver issues. I don't know that much else about it.
Edited to add: he believes toxic bile is the root of things like histamine intolerance.

Interesting! As far as bile goes I did find TUDCA seemingly helpful at one point but it didn’t solve my problems generally. Funnily enough I have a bottle of TUDCA that I’ve also been too scared to try just because supplements I used to tolerate sometimes make me sick now. Lactoferrin has so many mechanisms of action that it’s hard for me to even tell exactly why it is helping me. I also have to say that I drank a lot over the weekend which I rarely do (kind of was unavoidable) and it canceled some of the benefits but overall I’m much better off than I otherwise usually am. Of course alcohol is terrible when it comes to histamine AND endotoxin and my problems all circle around those kinds of things… I’m excited to resume this protocol. I’ve heard some people with post viral issues say that lactoferrin cleared it for them but the benefits didn’t even kick in til the two week mark for them. Also someone on phoenixrising said lactoferrin put her CFS in complete remission for 5 years.

 

[artist]

Yah I am done with trial'ing and error'ing... potatoes and oatmeal taste good but ain't worth the suffering. I am getting off the starch/no starch rollercoaster. It's not fun anymore. I H A T E the feeling of starch poisoning; feeling sick with the 'starch flu', a general malaise, CFS flareups, weak, lethargic, depressed/low motivation, skin issues etc, etc. Makes me want to throw out all the rice out of my house.

I was also thinking about iron overload because no starch diets often means a larger intake of calories from meat, which means a lot of iron. If you have gene mutations for heraditary hemochromatosis then eating even small amounts of red meat daily will slowly build up over time. But as you have figured already it sounds more like a MCAS/histamine intolerance issue. I had no idea lactoferrin was such a powerful anti-histamine substance

For sure, it’s hard to say why lactoferrin is working becuase it has so many benefits. Maybe I have a bit of a perfect storm going on with copper/iron, viruses, gut permeability and mast cell instability and it’s hitting multiple targets which is why the benefits were more noticeable. I originally got the guts to try it because of its apparent TLR4 blocking ability, and I’m always looking for more of those (low starch being imo the best functional “TLR4 blocker” there is)

Avoiding starch makes me feel super human (compared to my feeble baseline ) However I don’t feel good if I OD on fructose either (like I can’t do 100s of grams like some people on here, I start to get what I think are ammonia symptoms) so having dextrose as an option if I wanna make a big glass of lemonade or something helps me with adherence to low starch at the moment. I also find I can get away with a periodic starch meal as long as there’s no gluten but only really one or two times and I start having problems again. Moderate carb and MUFA makes it much easier than when I was trying to be either high or low carb and relying solely on saturated fat. I like my Lara bars and olive oil lol.

 

[Zsazsa]

they did run the basic blood panel at the ER? I think I have access to those

Was everything within normal range? Or too close to upper/lower limits?

 

[artist]

Was everything within normal range? Or too close to upper/lower limits?

The one thing that was flagged as low is CO2 was below range. All the other numbers seem normal. I know that raising CO2 is a big deal around here and I’ve been helped with bicarbonate in the past but I’m not sure how else to act on that information….

 

[Bart1]

I am interested in that..The fact that I already had MCAS and got POTS/collagen problem at the same time is pretty coincidental. How did the EDS manifest for you? I actually have always had hypermobile joints but I’m not sure how it works and whether that would be related

I suddenly got hypermobile, after taking thyroid. I didn’t know I had chronic lyme and was living in a moldy house. My core/hips suddenly becamd very flexible, neck and skin very thin. I first thought it was cortisol, because I also developed a small buffalo hump. I still think cortisol is involved but my hump might also have come from cranial cervical instability, which developed from collagen depletion and bad CSF flow. I also have hemochromatosis which interferes with copper.

A lot if mast cells are located in collagen so EDS and MCAS go hand in hand as well as POTS

 

[artist]

Thanks @bart1, conceiving of this vein stuff as primarily a mast cell issue makes a lot of sense to me. Have you found anything particularly helpful for your case? I’ve been looking at the RCCX mutation theory recently and it’s pretty interesting to me.

I also said previously that I didn’t have gum recession with all this, but I don’t think that was true. I do think I had some additional gum loss in the last 6 months but I was very focused on the veins and didn’t realize.

So serrapeptase, lactoferrin and horse chestnut seem to be keeping me pretty stable. I’m now exploring B1 as a potential root cause, but tolerating TTFD (Thiamax 100mg) has been a bear. It jacks my histamine levels way up and gives me severe fatigue so I clearly either need to lower the dosage and titrate or choose another form. It’s funny how people recommend taking molybdenum to help tolerate the sulfur from TTFD Although maybe B1 is the nutrient that molybdenum pushed too hard on for me in the first place. Still have no idea, which is maddening.

I’m gonna try regular Hcl form for a few days and see how that goes. I’ve been taking B2, B3, magnesium as cofactors but I might also need selenium. It starts to get a little scary the more cofactors I have to add because I don’t know if I’m reacting to them. I know I love B2 and magnesium but the rest I’m not as sure. I’ve returned glycine to my routine and I take it in the mornings, I’ve noticed I’m much calmer in general. Hopefully that will help with the B1 as well since it might increase glutathione.

 

[Zsazsa]

people recommend taking molybdenum to help tolerate the sulfur from TTFD

It just occurred to me that {moly + B1 + sulfur} (+potassium +folate +histamine) tend to occur together in nature (beans), so it probably makes sense that if one takes too much of one nutrient there will be a higher need for the others.

Just a warning regarding supplemental (unbalanced) folate: it lowers cortisol and raises histamine.

 

[Bart1]

Thanks @bart1, conceiving of this vein stuff as primarily a mast cell issue makes a lot of sense to me. Have you found anything particularly helpful for your case? I’ve been looking at the RCCX mutation theory recently and it’s pretty interesting to me.

I also said previously that I didn’t have gum recession with all this, but I don’t think that was true. I do think I had some additional gum loss in the last 6 months but I was very focused on the veins and didn’t realize.

So serrapeptase, lactoferrin and horse chestnut seem to be keeping me pretty stable. I’m now exploring B1 as a potential root cause, but tolerating TTFD (Thiamax 100mg) has been a bear. It jacks my histamine levels way up and gives me severe fatigue so I clearly either need to lower the dosage and titrate or choose another form. It’s funny how people recommend taking molybdenum to help tolerate the sulfur from TTFD Although maybe B1 is the nutrient that molybdenum pushed too hard on for me in the first place. Still have no idea, which is maddening.

I’m gonna try regular Hcl form for a few days and see how that goes. I’ve been taking B2, B3, magnesium as cofactors but I might also need selenium. It starts to get a little scary the more cofactors I have to add because I don’t know if I’m reacting to them. I know I love B2 and magnesium but the rest I’m not as sure. I’ve returned glycine to my routine and I take it in the mornings, I’ve noticed I’m much calmer in general. Hopefully that will help with the B1 as well since it might increase glutathione.

I’m in the same boat. RCCX could you briefly explain? Generally I try to stay away from looking too much into genes, because I might have some issues but now their much worse, I follow Peat’s line and looking to improve metabolism to solve things.

An explanation could be low ATP, mitochondrial disease. In that state whatever “genetic weakness “ one might have will cause you trouble. Also lyme and especially co-infection bartonella have it out for collagen. Other viruses too. Also once you have a nervous system in overdrive things like mcas and pots get into the picture.

I also focus on Thiamin but it’s hard, it will bring too light all other deficiencies you might have and need to address, a little like taking thyroid

 

[artist]

I’m in the same boat. RCCX could you briefly explain? Generally I try to stay away from looking too much into genes, because I might have some issues but now their much worse, I follow Peat’s line and looking to improve metabolism to solve things.

An explanation could be low ATP, mitochondrial disease. In that state whatever “genetic weakness “ one might have will cause you trouble. Also lyme and especially co-infection bartonella have it out for collagen. Other viruses too. Also once you have a nervous system in overdrive things like mcas and pots get into the picture.

I also focus on Thiamin but it’s hard, it will bring too light all other deficiencies you might have and need to address, a little like taking thyroid

There’s a website RCCXandillness.com where the originator (sort of) explains it. She is an Ivy-educated doctor who developed CFS and a host of other problems (including hyper mobility, which she talks about a lot) as an adult. I’m not married to the details but I think she correctly theorizes that there is some kind of genetic priming that enables one to develop a stress-induced illness. This is something that has bothered me for a long time, because while I didn’t have the best childhood, the idea that I have had such a uniquely difficult life being an upper middle class American kid whose parents happened to fight a lot is just absurd to me. Many people live through wars and don’t get a chronic illness. However the connection between my seemingly natural inability to turn stress off or control it, the high adrenaline personalities in my whole family, the related illnesses throughout my family tree (her example of the father with MS and mom with PTSD happens to match my situation exactly), etc does seem to point to something genetic. She thinks the basement level of the problem (beneath the mast cells and mitochondrial problems etc) is hormonal. Regardless, thinking more along these lines does help me conceptualize my problems better. Even my emotional landscape (being drawn to dramatic/cosmic concerns, thinking in life or death terms, finding the world a hostile place) seems to fit with the idea of a brain wired for danger, which she talks about.

Thiamine is super hard to handle. I still get a ton of benefit from B2 and I’m wondering if I should just stick with that for a while before I try again. I honestly wish I could find a low dose multivitamin that had the right forms of stuff and not random things like 1000% of the RDA of chromium. I feel like I’m deficient in everything.

 

[artist]

It just occurred to me that {moly + B1 + sulfur} (+potassium +folate +histamine) tend to occur together in nature (beans), so it probably makes sense that if one takes too much of one nutrient there will be a higher need for the others.

Just a warning regarding supplemental (unbalanced) folate: it lowers cortisol and raises histamine.

That’s a really good point. Molybdenum is a hard nutrient to get otherwise and I have avoided beans most of my life so perhaps there is a connection there. I also react to folate like almost no other nutrient in that it gives me severe almost instant depression.

 

[Bart1]

There’s a website RCCXandillness.com where the originator (sort of) explains it. She is an Ivy-educated doctor who developed CFS and a host of other problems (including hyper mobility, which she talks about a lot) as an adult. I’m not married to the details but I think she correctly theorizes that there is some kind of genetic priming that enables one to develop a stress-induced illness. This is something that has bothered me for a long time, because while I didn’t have the best childhood, the idea that I have had such a uniquely difficult life being an upper middle class American kid whose parents happened to fight a lot is just absurd to me. Many people live through wars and don’t get a chronic illness. However the connection between my seemingly natural inability to turn stress off or control it, the high adrenaline personalities in my whole family, the related illnesses throughout my family tree (her example of the father with MS and mom with PTSD happens to match my situation exactly), etc does seem to point to something genetic. She thinks the basement level of the problem (beneath the mast cells and mitochondrial problems etc) is hormonal. Regardless, thinking more along these lines does help me conceptualize my problems better. Even my emotional landscape (being drawn to dramatic/cosmic concerns, thinking in life or death terms, finding the world a hostile place) seems to fit with the idea of a brain wired for danger, which she talks about.

Thiamine is super hard to handle. I still get a ton of benefit from B2 and I’m wondering if I should just stick with that for a while before I try again. I honestly wish I could find a low dose multivitamin that had the right forms of stuff and not random things like 1000% of the RDA of chromium. I feel like I’m deficient in everything.

Very interesting, but we need to be careful to not get stuck the state of helplessness.

I found someone who fixed the hEDS, MCAS, etc just my diet and high dosing b vitamins.

So that’s what I’m trying. Interesting about the B2, I do well with it as well are you taking plain b2? How much?

 

[artist]

Very interesting, but we need to be careful to not get stuck the state of helplessness.

I found someone who fixed the hEDS, MCAS, etc just my diet and high dosing b vitamins.

So that’s what I’m trying. Interesting about the B2, I do well with it as well are you taking plain b2? How much?

Definitely, I don’t mean to bring up genes to be fatalistic but I would rather understand what I’m dealing with so I can know better how to procede. I feel that in my case there is a strong genetic component but it just encourages me to focus on doing what works for me instead of trying to be “normal” or whatever. I’ve already gained a lot of control and made improvements in my health through my own interventions but I have a ways to go. I am also getting the impression that B vitamins are the most promising area of supplementation for long term healing. Speaking of which. B2 is one of the best things I’ve ever tried and it’s new for me as of this year. It especially lowers the feeling of being poisoned (ammonia? It does regulate homocysteine) that I used to always experience in the mornings, and lowers my chemical sensitivity. I feel much lighter, sturdier and just healthier taking it. It feels like something I have been missing for a long time. And yes I use plain riboflavin, ~20mg (i open a capsule and take a little) I have R5P I bought this week but I didn’t notice anything special from taking it, in fact it lacked the small instant boost I usually get from plain riboflavin, even though it’s a double dosage (50mg).

 

[Bart1]

Definitely, I don’t mean to bring up genes to be fatalistic but I would rather understand what I’m dealing with so I can know better how to procede. I feel that in my case there is a strong genetic component but it just encourages me to focus on doing what works for me instead of trying to be “normal” or whatever. I’ve already gained a lot of control and made improvements in my health through my own interventions but I have a ways to go. I am also getting the impression that B vitamins are the most promising area of supplementation for long term healing. Speaking of which. B2 is one of the best things I’ve ever tried and it’s new for me as of this year. It especially lowers the feeling of being poisoned (ammonia? It does regulate homocysteine) that I used to always experience in the mornings, and lowers my chemical sensitivity. I feel much lighter, sturdier and just healthier taking it. It feels like something I have been missing for a long time. And yes I use plain riboflavin, ~20mg (i open a capsule and take a little) I have R5P I bought this week but I didn’t notice anything special from taking it, in fact it lacked the small instant boost I usually get from plain riboflavin, even though it’s a double dosage (50mg).

Yes I feel you. From what I've gathered the genetic research on it is very inconclusive. There definitely seem to be a genetic predisposition but for me the fact that even with the "faulty" genes, we should be able to get back from it, especially if you're not born with it.

I've read that multiple people with hyper mobility do well with B2. According to Chris Masterjohn, plain riboflavin is better that r5p, some people do well/better with r5p so I'm not sure.

 

[redsun]

@artist If you still are trying to reduce bulging veins I have some new suggestions. Though again these are not health suggestions but specifically about reducing vasodilatory signalling in the smooth muscles as well as increasinf vasoconstrictive signalling. I recall you mentioned consumed a lot of salt. Not sure exactly how much but Salt is very effective at reducing RAAS activity and thus all the vasoconstrictive effects of RAAS are reduced (aldosterone, angiotensin). I would not eat a very low salt diet but if you are willing to try and if your sodium intake is very high, you can try dropping it down but personally I would not go lower than 3g sodium for testing this. As long as you don't get side effects of course. If you do dont stick with it.

Also I have noticed retinol reduces vasodilation strongly which happens to me from eating a serving of liver which is very high in retinol. This is likely because retinol reduces glutamate activity. Glutamate is very much needed for nitric oxide production, lowering may reduce bulging veins. Though I would not recommend liver really. If possible It would be better to get more retinol from dairy products, eggs, which have decent amounts but are not likely to lead to eventually vitamin A toxicity compared to liver.

Acetylcholine also increases vasodilation by increasing nitric oxide production and also prostaglandin release. B-vitamins can generally increase Ach synthesis and may increase vasodilation though this is not so clear cut since B-vitamins do a lot of things but I would be wary of that.

Remember this is mainly about raising intracellular calcium levels in the smooth muscles. Most vasodilators work by reducing intracellular calcium. Some also work by dephosphorylation of myosin (epinephrine, histamine, and prostaglandins do this for example). I am not sure about this, but I have seen (not researched heavily though) omega 3s help reduce the production of the inflammatory prostaglandins which also vasodilate like D2, and E2 and not just antagonize the inflammatory effect. So Omega 3 can be something else you can try.

 

[artist]

@redsun thank you so much for your thoughtful reply. I read it earlier and was thinking about what I was going to respond and it actually made something occur to me…I have been thinking about how odd it is that I had ZERO visible veins prior to all this happening. Like actually an odd lack of vascularity like a child would have. This was part of why it seemed like such a big deal, but when I look back the initial veins I developed were actually fine and pretty typical. Since then they have gotten worse and I am now definitely overly vascular and bruisy, but it was a long journey to get to this point from having nothing.

I was also always extremely intolerant of calcium (would get severe joint/muscle pain and anxiety within a day of taking 500mg) and always had a lot of typical high acetylcholine and high glutamate mental health issues (severe anxiety, catastrophizing, tired but wired, adhd type feelings etc) I respond very well to glycine and horribly to glutamine. Considering that molybdenum made me feel mentally so much better and also that I have now attained the ability and even necessity for taking calcium, I’m wondering if the molybdenum unblocked something that was keeping my intracellular calcium excessively high. I know this is a state that in excess is associated with a lot of pathologies so it makes sense to me. It could be that once this was unblocked it made my veins vulnerable to the mast cell havoc that has been wreaking destruction on my body otherwise, even if perhaps the molybdenum itself wasn’t damaging. I will definitely try your suggestions.

 

[artist]

Well B1 was a huge setback for me that may have led to more permanent damage. A single Benfotiamine pill put me in a spiral for a solid week…histamine shot way up, I got trigger points for the first time in years, I got some visible gum loss, I was crying 5 hours a day for several days, became so so depressed…scary stuff. My veins went nuts and some are much more visible, especially around my eyes and the major one on back of right forearm lactoferrin was no match in the midst of this.

I do extremely well with moderate amounts of B2 which I think I’ve mentioned in this thread. I’ve resumed just taking that, calcium/magnesium, and the “vein stack” if you will (horse chestnut, serrapeptase, lactoferrin). I wound up reading the entire 67 page “B2 I love you” thread on phoenixrising and it gave me the idea to give manganese another shot. I think I’m going to give it a solid trial because my skin has become so much less dry in just the past few days and I just feel much better, and nothing else had been working. In hindsight a manganese deficiency is just as plausible as copper had been. It’s involved in collagen but also in GAG formation, bone, not to mention just general cellular energy. It aligns with my symptoms and I could imagine molybdenum inducing a manganese deficiency through a few possible mechanisms. I’m now trying to untangle if lactoferrin is a good idea to take with a theoretical manganese deficiency or if it’s counterproductive.

 

[artist]

Okay…when people say manganese is estrogenic they aren’t fcking around. Or at least, that’s how I interpret its effects on me this week. I was taking the upper limit of the safe dose (10-15 mg) because its really not impossible to achieve that through diet (if you eat a lot of stuff that I can’t eat so has been excluded from my diet for years), so I figured it was safe. I got some benefits immediately: more mental calm (supposedly it helps manage glutamate?), much moister plumper skin, higher dopamine feelings (curiosity/inspiration), kind of a return of a “spark” that I’ve felt went away after the first molybdenum episode in 2019. I quickly regained some of the fat on my hips that I had seemingly lost in the last 6 months on boron, which I ultimately find to be anti estrogen. And my veins seemed to be a bit less visible.

However, after about 4 days (beginning day 28 of menstrual cycle) things started to take a turn. My knees started to become hypermobile in a way I hadn’t experienced in years (I used to dislocate my knee caps all the time.) same with my knuckles. My back started to hurt a bit and I started getting unusual pelvic pains (not like normal menstrual cramps) and referred pain into my thighs, and then bruising all over. And then, aches in my arm crooks, and new veins (!!) there and on the fronts of my hips. I started feeling vertigo in low light settings. This escalated over the course of like 24 hours.

I stopped the manganese when I realized what was going on but it was basically too late. I’m still waiting for the effects to wear off several days later. I think that’s the last egg im going to break trying to make an omelet, if you will. I suspect I am actually deficient in manganese but I have to go low and slow, my body just can’t maintain homeostasis like it used to in the face of heavy duty supps. I still can’t tolerate even 100% of the RDA as supplemental vitamin c. I have achieved decent stability with just the lactoferrin, B2 and serrapeptase and I think I may just need to be patient or accept my situation as it is. I’m not sure nutritional solutions are going to work for me. Anti inflammatories and blood thinners seem like the only things that work for others on these systemic veins and that’s what incidentally has worked for me.

 

[allan442]

Okay…when people say manganese is estrogenic they aren’t fcking around. Or at least, that’s how I interpret its effects on me this week. I was taking the upper limit of the safe dose (10-15 mg) because its really not impossible to achieve that through diet (if you eat a lot of stuff that I can’t eat so has been excluded from my diet for years), so I figured it was safe. I got some benefits immediately: more mental calm (supposedly it helps manage glutamate?), much moister plumper skin, higher dopamine feelings (curiosity/inspiration), kind of a return of a “spark” that I’ve felt went away after the first molybdenum episode in 2019. I quickly regained some of the fat on my hips that I had seemingly lost in the last 6 months on boron, which I ultimately find to be anti estrogen. And my veins seemed to be a bit less visible.

However, after about 4 days (beginning day 28 of menstrual cycle) things started to take a turn. My knees started to become hypermobile in a way I hadn’t experienced in years (I used to dislocate my knee caps all the time.) same with my knuckles. My back started to hurt a bit and I started getting unusual pelvic pains (not like normal menstrual cramps) and referred pain into my thighs, and then bruising all over. And then, aches in my arm crooks, and new veins (!!) there and on the fronts of my hips. I started feeling vertigo in low light settings. This escalated over the course of like 24 hours.

I stopped the manganese when I realized what was going on but it was basically too late. I’m still waiting for the effects to wear off several days later. I think that’s the last egg im going to break trying to make an omelet, if you will. I suspect I am actually deficient in manganese but I have to go low and slow, my body just can’t maintain homeostasis like it used to in the face of heavy duty supps. I still can’t tolerate even 100% of the RDA as supplemental vitamin c. I have achieved decent stability with just the lactoferrin, B2 and serrapeptase and I think I may just need to be patient or accept my situation as it is. I’m not sure nutritional solutions are going to work for me. Anti inflammatories and blood thinners seem like the only things that work for others on these systemic veins and that’s what incidentally has worked for me.

Funny, I was looking on the forum to see if manganese was Estrogenic and I found your post. I also find it to be Estrogenic (good mood, returned libido, joints aren’t scraping past each other) although I’m a different case with nearly undetectable E2 naturally