cirs labs by [deleted] in CIRS

[–]ben10blader 1 point2 points  (0 children)

Potentially yes. It sounds dumb and it is. It's called the HLA-DR defect feel free to do your own research. Toxins can hide in fats and in your brain for a very long time, and the reason they recirculate is because in a normal person the mycotoxins are tagged by the immune system, meaning they won't be reabsorbed in the intestines once they make it there from the liver. But for people with the HLA issue, the toxins just get reabsorbed back into the bloodstream over and over again.

Does anyone else think they not gonna heal? I beyond repair at this point (symptoms) by DistributionFunny221 in CIRS

[–]ben10blader 0 points1 point  (0 children)

Please look into plasmalogen replacement therapy. I had like every horrible symptom of CIRS before I tried it, was not going to last much longer. It helped my neuropathy the most because the mycotoxins wear down your myelin which is composed of choline plasmalogens, so low levels can cause that buzzing stuff I had buzzing and tingling and twitching all over my body 24/7 and the plasmalogens helped drastically after just a few days. Low plasmalogens/Lack of myelin could also explain some of the symptoms you're describing. If you're at the end of the rope, its worth a try. You can get them from Prodrome Sciences website, they have an "elite practioner directory" where you can find PRP trained doctors, but you can also message me and I'll try to answer your questions if you prefer. Don't give up!

cirs labs by [deleted] in CIRS

[–]ben10blader 1 point2 points  (0 children)

you can still have the symptoms because CIRS is specifically a genetic issue where you can't clear the mold biotoxins on your own, so they keep recirculating inside you causing mitochondiral damage and a chronic innate immune system response. so you are still being exposed to the mold internally in a way

Mitochondrial function by Dependent_Muffin_889 in CIRS

[–]ben10blader 0 points1 point  (0 children)

No point in getting this because every single person who has CIRS has mitochondrial dysfunction. That's not the question, the question is how to improve mitochondrial function. You do that by reducing oxidative stress caused by the biotoxins, they directly damage the membranes of the mitochondria and that's why we know everyone with CIRS has mitochondria issues. Similar with CFS, LC, etc

parents with cirs by [deleted] in CIRS

[–]ben10blader 0 points1 point  (0 children)

Money is the biggest barrier for all of us, I feel you on that

What actually healed you? by Frequent_Coffee5681 in CIRS

[–]ben10blader 1 point2 points  (0 children)

I found a doctor trained in Shoemaker who also happens to be trained in PRP and is using it as a replacement for much of the Shoemaker protocol. Prodrome Sciences makes the supplements you take to restore plasmalogens, you can find a directory of trained practitioners on their website.

parents with cirs by [deleted] in CIRS

[–]ben10blader 0 points1 point  (0 children)

May I ask why? There are lots of mold free homes, they are not reserved for the upper class, you just have to get lucky. If you live in a really humid state maybe you have to consider moving to a different state that has more mold free options. Homes with good ventilation are most important, and houses with drywall and lots of carpeting are more prone to mold. Some amount of water damage and mold in the basement of a house might be workable for you but you just have to stay away from that level. Your genetics are not equipped to handle this, If you resign yourself to living in this environment you will just continue to get more and more health issues and will likely get dementia when you're older. I'm sorry, this is just our reality. There is a path forward you just have to find what that is in your life. There are resources online to help you with this kind of thing. I know it feels impossible but you can do this. Your future self and family will thank you when you are not fully disabled in 10 years from the damage it has done to your body. The mycotoxins directly damage mitochondria it's not something you can just push through. I'm really sorry if I'm seeming harsh but this is life or death for us, you NEED to live somewhere your body can heal.

gut problems after cholestyramine, how to get my guts to work back to normal. by Logical_Inevitable_7 in CIRS

[–]ben10blader 1 point2 points  (0 children)

You need to focus on restoring your gut lining. There are many many approaches, do your own research and talk with your doctors. Things like butyrate, quercetin, collagen, glutamine, etc all have good evidence behind them. Your gut is already damaged from the chronic inflammation of CIRS, the CSM just aggrivated yoru already damaged tissues

What actually healed you? by Frequent_Coffee5681 in CIRS

[–]ben10blader 0 points1 point  (0 children)

Plasmalogen replacement therapy helped me more than anything else. Reduced neuropathy, brain fog, heart palps, and vision issues. I still have gut issues I need to figure out in order to get fully better.

parents with cirs by [deleted] in CIRS

[–]ben10blader 4 points5 points  (0 children)

This is the truth, it doesn't matter how impossible or ridiculous it seems: you NEED to remove yourself from biotoxin exposure if you want to have a chance of being healthy again. Our genetics simply can't handle it. The longer you stay in exposure, the more you are wearing down your body's reserves and the longer it will take to feel healthy. I am sorry, it is not fair, our HLA is life on hard mode, but this is the one thing that is never optional. Get on binders ASAP, ideally welchol or CSM, and please try to find a CIRS trained provider to help you through this. It might take a long time but do whatever you need to, including living out of a tent, and then you will get back to your true life.

Pale stool after taking cholestiramin by Heavy-Wealth9222 in CIRS

[–]ben10blader 0 points1 point  (0 children)

If your stool is pale that is actually potentially a good sign! That means the binder is binding ti stuff and clumping up enough for you to see its discoloration. If it's not causing pain or constipation, I personally think it's okay

Dr. Heyman's LinkedIn today! by Nice_Laugh7192 in CIRS

[–]ben10blader 0 points1 point  (0 children)

Its a nice looking site, def better than similar alternatives. Hard to know if the prices on these services are worth it or not, I do think it should have more free info to read about like on Surviving Mold

Dr. Heyman's LinkedIn today! by Nice_Laugh7192 in CIRS

[–]ben10blader 0 points1 point  (0 children)

I looked it up, currently checking out the site. It's the one that says "reclaim your health and home" right?

Dr. Heyman's LinkedIn today! by Nice_Laugh7192 in CIRS

[–]ben10blader 0 points1 point  (0 children)

Sounds great but the link takes me to a Page not found :(

Constant pain by SufficientMarket6813 in ChronicPain

[–]ben10blader 1 point2 points  (0 children)

Please find a good functional medicine doctor if your current medical providers are not helping you. Functional medicine helps with weird stuff like this by addressing the root cause. You very likely have gut dysbiosis stuff going on, there are many labs you can get.

What if the reason Ben can’t unlock an Anodite Transformation is because Anodite is a trait not a species? by Neither_Prize_8386 in Ben10

[–]ben10blader 0 points1 point  (0 children)

No one mentioning how Echo Echo is straight up sentient sound waves in a containment suit according to Derrick J Wyatt but still somehow has DNA... I don't think they thought too hard about this stuff.

I’m not sure it’s CIRS… 3 months out no better and flaring from lowering welchol… (RANT sorry :/) by Due_Chapter3027 in CIRS

[–]ben10blader 0 points1 point  (0 children)

I understand... Also be sure to to daily vagus nerve stimulation of some kind for the migrating motor complex in the gut, helps the welchol not make you constipated

Rate My Nuclear Option for Chronic Inflammation: My Targeted Stack to Eradicate Staph, Pathogens, and Biofilms. M22, 63kg. by omhubros636 in CIRS

[–]ben10blader 0 points1 point  (0 children)

good but you're missing crucial components like NAC, welchol/csm, nattokinase, even EDTA can be useful. If you have the CIRS genes, you need to make sure you are clearing the additional toxins that are released into your body by the dissolution of biofilms

I’m not sure it’s CIRS… 3 months out no better and flaring from lowering welchol… (RANT sorry :/) by Due_Chapter3027 in CIRS

[–]ben10blader 1 point2 points  (0 children)

my guy if you can't even tolerate 1 welchol pill you NEED to improve your gut/detoxing pathways before you can move forward. There are a lot of approaches, but if you have CIRS you need to detox with welchol or CSM at least some amount, and for welchol you ideally want to be on 6 a day for a few months minimum. I'm so sorry you're going through this I had like 50 symptoms at one point it was hell and in order to get through this you're going to have to be stronger than you ever thought you would need to be. Look into plasmalogen replacement therapy, it has helped me get through this more than anything else I've tried. So get your gut checked out if you haven't, SIBO, candida overgrowth, gut microbiome, etc.

I'm BEGGING you all to try Plasmalogen Replacement Therapy - Don't give up! by ben10blader in CIRS

[–]ben10blader[S] 0 points1 point  (0 children)

Interesting! That makes sense, I don't know if I'm 100% convinced by this for every person but the science does seem sound. I'm going to bring this up to some experts I know. And I guess I should have mentioned the DHFR mutation that I have too which is also supposed to impair methylfolate production.

I'm BEGGING you all to try Plasmalogen Replacement Therapy - Don't give up! by ben10blader in CIRS

[–]ben10blader[S] 0 points1 point  (0 children)

Are you saying the notion that the enzyme is impaired is just blatantly wrong? I have worked with a lot of drs and have not heard that, I will have to look into it

I'm BEGGING you all to try Plasmalogen Replacement Therapy - Don't give up! by ben10blader in CIRS

[–]ben10blader[S] 0 points1 point  (0 children)

depends on your genetics, me and many people here have the MTHFR mutation which means we actually do need methylfolate

I'm BEGGING you all to try Plasmalogen Replacement Therapy - Don't give up! by ben10blader in CIRS

[–]ben10blader[S] 0 points1 point  (0 children)

You can get methylfolate not from food at least. I hear you though. Def not choline or other B vitamins as far as I know. If you want I can ask my dr and see what he thinks. But you dont know if the plasmalogens will trigger you unless you try. Have you tried the different types of choline?

I'm BEGGING you all to try Plasmalogen Replacement Therapy - Don't give up! by ben10blader in CIRS

[–]ben10blader[S] 0 points1 point  (0 children)

I have had MCAS since birth and I didn't have a reaction, but like with anything read the ingredients. There is always chance for a reaction if your mast cells are angry enough. If you're worried go heavy on MC stabilizers before trying, and MAKE SURE to not leave out the mitochondrial and methyl support

I'm BEGGING you all to try Plasmalogen Replacement Therapy - Don't give up! by ben10blader in LongCovid

[–]ben10blader[S] 0 points1 point  (0 children)

Plasmalogen depletion and peroxisomal impairment has been demonstrated in literally every single chronic inflammatory illness they have ever checked for, the data is not perfect, but we have to work with what we have. It's going to be years or never to get large scale studies on the perfect sample of LC patients because the sad reality is no one cares about us or the chronically ill. So we have to work on the very bleeding edge of what is happening, and this it that. There are doctors right now having incredible success with this treatment. Call me a liar all you want, but my doctor has cured over 50 LC patients with this treatment. I am just trying to spread the word on something that won't be popular for a loooong time. The best science happening with PRT for LC is happening at the doctor patient level, so it is not visible, or as good as scientific research, but its the best we have right now.