Anyone else here have MCS too?

[pbyr]

Thanks Wayne for the compliment - your post provides good information. So the protocol is similar, as others may not know, NAC is a converted form of cysteine which is involved in glutathione production.

 

[TJ_Fitz]

Gluthathione (gsh) plays a big role in this (MCS). Glutathione has a 2 way action, it supports immunity and secondly, it is involved in liver support (detoxification). The immune system holds the first priority in the body so all the support goes to immunity, glutathione plays a key role in immunity.

N-acetylcysteine can boost GSH levels, too.

 

[pbyr]

I forgot to include turmeric which can support liver health. Turmeric also protects the cardio system, neurological, can kill some infectious organisms and a whole host of other things likely due to the strong antioxidants it possesses.

http://naturalsociety.com/turmeric-repairs-damaged-liver-tissues-promotes-liver-health/

 

[TJ_Fitz]

I suspect that MCS comes about because there's already a high level of toxins being produced endogenously that have to be cleared, so most of the liver's detoxification capacity is already being used, which leaves little to handle more toxins coming in from the outside. My MCS has improved significantly as I've worked on getting my systemic candidiasis under control. I'm fairly certain that mycotoxins are the main culprit in my particular case of ME/CFS.

pbyr, I've also found turmeric to be an excellent supplement. I've been very please with the Turmeric Curcumin Complex from Sam's Club (surprisingly!). It uses a more absorbable form of curcumin.

 

[pbyr]

Your observations are correct, when the immune system is activated, there are very strong toxins produced by it. For example there are oxygen and nitrogen compounds produced, these are used to lyse the pathogens. Lyse means these compounds literally poke holes into organism walls which kills them.

The problem is the compounds toxify us and we need to clear them up. These compounds attack cell membranes which weaken the functions of the cells which leads to lower energy, lower resistance, weakened immunity, lowered ability to detoxify etc. Antioxidants negate the harmful effects of these oxidants and will protect the cells from further damage. And I should mention that pathogens themselves produce toxic byproducts as you have suggested (mycotoxins).

I have gone from being bed ridden to nearly functional by addressing the infection and toxin issues.

Thanks for the tip on the turmeric compound.

 

[Merida]

Another idea: My son ( second child) was delivered via suction. When they brought him to me, his jaw was very retracted and quivering and his face was abnormally red and not "right." Now I appreciate that these are indications of high neck trauma He had multiple sensitivities as a baby and boy - to everything. How many people with MCS have "neck issues?"

 

[max_yazhbin]

I have MCS too. Background: Hashimoto's confirmed with high anti-TPO ab (max 190), no anti-Tg ab, no anti-TRab, thyroid hormones consistent with hashimotos. Full body MRI showed thyroid nodule, thyroid nodule biopsy showed goiter. Liver ALT above 100 4x in the last 3 years, AST corresponds with ALT and AST never went above 40. Full body MRI showed liver cysts, not consistent with tumor and not consistent with hydadtic cysts. Additional MRI findings: slightly enlarged spleen. Swollen lymph nodes under jaw that started after taking itraconazole back in 2019 and still present today. Krebs cycle is broken with <dl succinate as determined by nutreval testing. Tinnitus upon using a new teflon coated frying pan in China, still present today.

Emeramide really helped for about a month, I thought I was cured but my MCS went back to the way before treatment. ALT lowered from 120 to 40 in a week. anti-TPO ab not affected, lymph nodes got slightly smaller but then went back to before emeramide size.

Ebselen almost completely got rid of my MCS but I still had my chronic fatigue. No effect on anti-TPO ab, made my lymph nodes permanently smaller but they're still there.

Feel free to directly contact me, you'll find my email address in my signature.

 

[TJ_Fitz]

Many in the mold illness/CIRS community (including myself) find that our chemical sensitivities wax and wane in proportion to the amount of exposure we have to water-damaged buildings.

 

[Pops]

I have it. It came on about 10 years in when I was really pushing it with exercise.

Got horribly bad for a couple of years - impacted just about everything - and is better now but I still cannot sleep inside...

If anyone has found anything other than avoidance that helps I would love to hear it.

Dr. Cheney used to use Neurontin.

Hi Cort, (thanks for helping me become a new member) I also pushed exercise way too hard back in 1997, which I think contributed to my immune system deteriorating and wicked MCS. But ironically it is now light resistance exercise that is helping me.
After 25 years of the mcs monkey on my back, I finally found not a cure, but a way to manage my symptoms by MAXIMIZING LYMPHATIC DRAINAGE to remove toxins from my body.
I found out about it in a book by an MD who says any kind of brain injury, whether it is traumatic or even gradual injury from eating too much sugar can damage the lymphatic system so that you do not clear toxins well. She says that to keep it working well, you need to drink lots of water and exercise - especially resistance exercise. She says even approx 10 minutes of resistance exercise increases lymph flow 300 to 600 percent.
I have found that doing simple squats without weights, 3 sets of 12 reps has been able to clear my mcs symptoms. Of course I am keeping very hydrated too. She also said the rebounders/small trampolines are also very good for lymph flow. I also found on YouTube how to do some face and neck
self massage for lymph flow. Dry skin brushing is also good for lymph flow - health stores have natural-bristle skin brushes and also coconut fiber skin brushes.

 

[CantosMaria]

Miyarisan has almost completely stopped MCS for me.

I was suffering severely from laundry perfumes, cigarette smoke (even third-hand), kerosene fumes, "air fresheners". Now I avoid them because I know they're harmful, but I don't get strong reactions.

Three weeks off of the Miyarisan and the severe reactions came back.

What conditons do you have besides MCS?

 

[Vaporization]

What conditons do you have besides MCS?

ME/CFS, complete with PEM, POTS/Orthostatic Intolerance (Never have really understood the difference), IBS, brain fog.

Miyarisan is not even close to the only thing I'm taking, but it seems to be the one that holds the most control over my slipping back into very severe MCS. The only symptom I have now almost went unnoticed. My blood pressure goes up when I'm exposed to chemicals.

 

[TJ_Fitz]

Here in Japan, the prevailing attitude is that MCS is some sort of flaw in the sufferers. Like an allergy, an improper immune response. However, there is much research that suggests that though MCS is clearly a hypersensitive response, it is not improper.

That makes sense to me nowadays. I have CIRS (aka "mold exposure illness"), which is essentially what happens when you have a chronic biotoxin exposure but your immune system fails to respond appropriately, i.e. fails to produce sufficient antibodies against the toxin. The biotoxins (especially mold toxins) impair your ability to detoxify many other things, hence MCS. And the biggest reason for having a crippled immune response is chronically elevated SNS/trauma/stress hormone levels, which is why some people make remarkable recoveries with neural retraining or other stress-reducing approaches: their immune systems start working properly, the biotoxins are destroyed by the immune system, and things start working properly again.

I'd be interested to see, when ME/CFS patients have been sorted out by root causes (biotoxin illness vs. post-viral illness vs. others), if MCS is statistically more prevalent among the biotoxin crowd than among those with other causalities.

TLDR: Chronic elevated stress response -> suppressed immune system -> inadequate antibody production -> chronic biotoxin load -> MCS

 

[CantosMaria]

That makes sense to me nowadays. I have CIRS (aka "mold exposure illness"), which is essentially what happens when you have a chronic biotoxin exposure but your immune system fails to respond appropriately, i.e. fails to produce sufficient antibodies against the toxin. The biotoxins (especially mold toxins) impair your ability to detoxify many other things, hence MCS. And the biggest reason for having a crippled immune response is chronically elevated SNS/trauma/stress hormone levels, which is why some people make remarkable recoveries with neural retraining or other stress-reducing approaches: their immune systems start working properly, the biotoxins are destroyed by the immune system, and things start working properly again.

I'd be interested to see, when ME/CFS patients have been sorted out by root causes (biotoxin illness vs. post-viral illness vs. others), if MCS is statistically more prevalent among the biotoxin crowd than among those with other causalities.

TLDR: Chronic elevated stress response -> suppressed immune system -> inadequate antibody production -> chronic biotoxin load -> MCS

I also have severe CIRS but I am not going to agree with your interpretation. I was healthy CALM child till boom one day everything changed. This is when i likely got lyme and since then my stress response has been horrible. Now i have everything, MCS, MCAS, organ damage, extreme inability to fight infections.