MCs/mcas?

How do you tell the difference between mcs and mcas? I’ve had mcs for years. But due to recent events think maybe I have mcas.
I used to get violently ill when exposed to perfume, cologne, or lavender. But for whatever reason it toned down over the years to only being headaches and occasional nausea. This was without official Lyme treatment, just a super clean diet.
However, lately my face has been turning red when I am exposed to chemicals (laundry detergent, cologne, perfume, cleaners). It calms down overnight when I’m home (squeaky clean environment). But the exposure happens at work every day (although they switched some things for me and yesterday I didn’t react). I did react at church this morning though.
So is mcs the same as mcas? Why do I tolerate raw goat dairy just fine? That’s supposed to be high histamine. I’m currently on aip with raw goat dairy, coffee and chocolate allowed. I’m very confused. My symptoms seem mild compared to most people with mcas. But maybe they can be? I had a week long flare after cleaning out my barn last week. Could be exercise intolerance or mold, although the bedding wasn’t really moldy this time.
Experienced thoughts appreciated.

Multiple chemical sensitivity

I don't really see what symptoms/tiggers you are describing that might be MCAS? You mention the chemicals again which all seem like normal MCS triggers.

There are people who believe MCS is just on the same spectrum as MCAS, namely Dr. Afrin/Dr. Dempsey, and this would make sense because there is a lot of crossover. I have sensitivities to some chemical scents, but I have MCAS and have many more triggers aside from this, including sunlight, exercise, and many foods. Generally I'm okay with natural scents like essential oils though.

This thing with MCAS is that while some people might react to things like dairy, as you mention, not everyone will. And even people who react to it might react differently or not at all to the same trigger at different times. It's very individual. Also, a low histamine diet doesn't help everyone, and some people can actually handle eating histamines. It depends on your unique situation, perhaps histamines aren't such a problem for you. I can eat chocolate sometimes but not other times, generally dark chocolate triggers me moreso, and bigger amounts. For a while I was able to tolerate avocado just fine but then I started reacting to it.

GoatLady,

Hello! I just went back and read your other posts. You sound very similar to me in ways that most here don’t experience or talk about.

I have also had MCS for years with fragrance being the biggest offender. At my worst, some fragrances (probably Axe and some laundry stuff) would send me into a near homicidal rage. Fragrance and other chemicals would feel like someone had poured battery acid on my brain. I would get burning, numbness, pain, rage and more.

I had an unusual sense of smell since childhood and could smell things others could not, but it wasn’t disabling then. When my illness first started in 2009, the sensitivities to smells increased to the point of being bothersome. I removed fragrance from my body, home, and car but was increasingly bothered by it at work and would avoid certain stores because of it. I also stopped wearing any makeup then.

I also developed redness and burning in my face that would usually start around 1 pm, peak around the time I got off work, and dissipate around 8 or 9 pm. This started in some fashion a couple years before the sudden onset of symptoms in 2009 and suddenly vanished in 2016 after starting what turned out to be a 6 month treatment of Nexium and Zantac. To this day, I have no explanation for what caused the flushing or why Nexium and Zantac together brought it to an end. I suspect it was MCAS related, but I had never heard of MCAS back then.

Then, in 2015, my immune system went off the cliff and I was full blown debilitated from then on. By 2016, I was diagnosed with CIRS from mold and moved in with a relative and started detoxing mold. That was when my MCS fragrance/chemical sensitivities went bonkers. At times it was so bad I wanted to die.

about 10 months later, I slowly started my own mix of Buhner’s protocols to cover Lyme, bartonella, and babesia. I had a hard time tolerating treatment but continued with it. I did have some improvements but was still very debilitating with joint/muscle stiffness/pain, numbness, and mold and chemical sensitivities.

The following are what I credit for noticeably improving my chemical sensitivities, burning, pain, and widespread numbness:

- Antifungals - Nystatin and Fluconazole
- TUDCA - 1 capsule 3x day before meals
- Antiparasitics - Ivermectin, Alinia, Mimosa pudica - multiple rounds

As far as MCAS, I am sure I have that, too. The symptoms that I suspect have been from MCAS:
- numbness when eating
- itching around my nose when eating
- tachycardia
- sudden bouts of weakness and feeling like I was going to pass out (this was connected to increasing mold exposure)
- severe fatigue when eating
- UTI symptoms that are culture negative (coffee, chocolate, nuts, sugar are triggers for me but not all the time)

I recently restarted Megaspore probiotics with MegaPre prebiotics and Sacchromyces boullardii. I have been feeling better since starting them.

I hope you make good progress. As far as supplements go, TUDCA has helped my sensitivities more than anything else. I regret that I waited so long to try it.

I also started Serrapeptase and then added Boluoke lumbrokinase not long ago. I suspect they are helping, but the effects are more subtle.
There are a couple of well known doctors who use them with their bartonella and mold patients.

From all that I have experienced, I believe my MCS, MCAS, and mold issues are due to some genetic problems detoxing and from dysbiosis in my gut. I have had unresolved IBS-C since 2015. Yeast, parasites, bacteria - they are all involved.

P.S. - I would strongly suspect mold sensitivities in your case.

Post Edited (WalkingbyFaith) : 4/24/2022 7:27:49 PM (GMT-6)

My Lyme/mold doctors (2) have smelled mold on me, too. They both had been sensitized to mold. I am sure I smell like mold now. I am living in my car for the second time and replaced all my clothes again, but they get washed and dried in the house. The washer and dryer are new. They were brought in new after we bought the house and had it remediated. Still, they get toxins on them from the dryer, I think. After a few washings, I can smell/detect it.

When I have a bad mold exposure or repeated exposures, my mold sensitivities spike and I can smell it on everything and everywhere and react to mycotoxins very much the same as I react to fragrance and chemicals. My MCS will usually spike after mold exposures, too.

If the doctor smells it on you, that’s a strong indicator that it’s in your house and maybe your car, too. Cars can get cross contaminated with mycotoxins when you live or work in a moldy house.

The only way to really confirm the house situation is to do an ERMI test from Mycometrics. You’ll need a test kit for each floor of the house. If there’s any visible mold or past or current water damage, there’s really no need to test. Mold is a given in that case.

Mold exposure is known to be a major cause of MCS, especially if the MCS is not obviously from occupational exposure.

Honestly, I found the guy who told me to be creepy so I wasn’t sure I believed him.
My parents own the house. I live here because it’s the only way I can afford land so I can keep my goats. I’m not opposed to buying my own place, but everything I see for sale is huge and too expensive. I want a couple acres and a 2 bedroom house. Plus how could I figure out if the house is moldy?
Temporary housing would only work for 6 months. I’m in Wisconsin and it’s freezing half the year.
I’ve read a lot about mold. I gave up on living a mold free life because I want to be with my family and I want to be able to visit friends. I don’t want to do the extreme mold avoidance thing, and that’s the only way to really avoid mold entirely. Even new clothes can be moldy.
Does ec3 work to remove mold from clothes in your experience?

“I gave up on living a mold free life because I want to be with my family and I want to be able to visit friends. I don’t want to do the extreme mold avoidance thing, and that’s the only way to really avoid mold entirely.”

- Same here. My mom and I talked and prayed about it, but all our family is here or nearby. I really can’t imagine going by myself to some part of the country I’ve never been in and tried to live essentially off the grid with no support system. I am not the worst case person, but I have been pretty badly affected and have lived in my car twice now - 11 months and 12 months and counting this go around with no end in sight.

I live in SE Georgia. Mold is a way of life in these parts, so avoidance here is nearly impossible. However, both my docs had other patients here who remediated or moved and recovered, according to them. I am an extreme case. I am more sensitized than their other patients.

Yes. Mold has always been around and has always been a problem according to the Bible. God gave Moses remediation instructions in Leviticus 14:33-48. Modern building construction is a problem and especially housing construction. Beyond that, our bodies are more dysfunctional than ever because of toxins in the air, water, food, and medicine. All that impairs the body’s natural detoxification processes. Plus, if our gut bacteria really are the fortress of our immune system, like doctors believe now, our gut bacteria have been assaulted by pesticides, herbicides, fungicides, antibiotics, and probably by GMO’s in the food chain plus the drugs we have taken. We don’t live in the same world our grandparents did.

I’m glad you’re high functioning and getting reasonable improvement with herbs. Don’t discount supplements and other non-Lyme and co specific treatments, though. I actually got the most improvement from those. Now I tolerate much higher doses of herbs than I did before.

I forgot to answer your question about EC3. I bought stuff to use in the house after we did remediation. I used the spray in my car. It made the air smell cleaner for a few minutes until it dissipated. I sprayed some directly on some green mildew growing on the vinyl siding of the house. It literally did nothing, so not sure how it claims to kill mold. I burned the candles in the house, but it didn’t have any effect that I could tell. I never did use the laundry stuff, but my current doc thinks it works.

I had an IQAIR in my relative’s house, and it kept me alive for 3 years there until a leak was discovered and the house became unbearable. I bought a new one in this house we bought and had remediated. I couldn’t tell it helped much here. This house is by far the worst of the three houses I have fled, but I still don’t know why. I never did another ERMI after remediation, although I bought the test kit. I can’t even go inside with a HAZMAT and respirator now. My mother is still living in there. Every time anyone comes there, I ask if they can smell or detect mold. They all say no but also say they can’t smell mold. Most contractors can’t smell or detect it if its not visible. If they could, they probably wouldn’t be able to do their lines of work without getting disabled mentally or physically.

Yesterday I visited a church I hadn’t been in before. I was hopeful as the building looked clean from the outside and not terribly old.

As soon as I walked in, I knew the air wasn’t good, and I smelled fragrance - not on people but in the building like air fresheners all over the building. I made my way through the building to the bathroom, where fragrance was even stronger and noticed water stains on the ceiling in the bathroom. I got into the sanctuary. At first, I thought I might feel better in there, but then I started feeling increased symptoms - burning in my face and head. I kept looking at the ceiling and finally spotted two areas of water damage. I left. I knew if I stayed it would only take much longer to recover. I was only there about 5 minutes total. Took two hours or so to recover from that 5 minute exposure.

Even though I am significantly better than I was a year or even 6 months ago, it was a confirmation that I have to be healed. I have been praying for God’s supernatural healing from all this. It’s time. I spent years trying to fix myself, but I failed. This is a God sized job, and He is well able.

Edit: One thing I noticed during my journey with this is that fragrance in general is much more tolerable to me if it’s in a mold free building. If the building has fragrance and mold, I react much worse than I would to one or the other.

Post Edited (WalkingbyFaith) : 4/25/2022 9:29:07 AM (GMT-6)

What dose tudca do you take?

- Microbe Formulas TUDCA Complete - 1 capsule before each meal. I originally took their TUDCA Plus which they replaced with TUDCA Complete. Their CellCore line that you can only get through your doctor still has the original formula and is called TUDCA Advanced. It has more TUDCA per capsule. I have also taken Nutricost TUDCA 500 mg at 1cap 2x day. I don’t think it’s as effective, but it has good reviews and is way cheaper.

Could my being more sensitive the last few months be due to the temperature/moisture changes because it’s spring here?

- Yeah, sure. I notice fluctuations in my sensitivities to mold and smell it more at certain times that I believe is due to changes in temperature, humidity, and precipitation. You really should be wearing some sort of inhalation protection when working around mold. If a half face respirator seems overkill, at least wear a cone shaped COVID face mask that is rated KN95. I use these that my grocery store carries - https://www.al-shields.com/product/kn95-solid-white-disposable-soft-shell-face-mask-with-hidden-metal-adjustable-nosepiece-and-ear-loops-for-civil-use-5pc-pack/15.

Those masks are comfortable and easy to breathe in and will filter out mold spores. I wear them when I cut the grass or clean the vinyl siding. They were not sufficient for cleaning out the mold filled gutters, though. It took weeks for me to recover from that job. Next time I will probably break out the respirator.

I do have MCS reactions to the masks themselves from the chemicals in them. I get numbness in my face. Once I wash my face, it starts to dissipate.

The KN95 masks and N95 filters will only filter mold spores, not mycotoxins or gases. You need filters like the 3M P100 Respirator Cartridge/Filter 60926 (Helps Protect Against Organic Vapors, Acid Gases, Ammonia Methylamine, Formaldehyde and Particulates) for that.

I am of the opinion that inhalation is the primary route of mycotoxins into the body, brain, nervous system, bloodstream, and gut.

Criceny09,

Have you ever been tested for Lyme or other tick borne infections? Some of the symptoms you described are common with babesia - head pressure, brain fog, dizzy, cognitive problems, anxiety/depression, possibly the feeling in your chest.

Not sure what the red, scaly patches might be, but pretty much all the other could easily be from any combination of infections.

Can you explain more about the feeling in your chest? Babesia is frequently suspected when a person has what is called air hunger. It’s a feeling like you can’t get a satisfying breath. Can be very unnerving and anxiety provoking.

Some people feel tightness like a belt across their rib cage. Others feel stiffness in their chest wall that feels like their chest cavity won’t expand when they try to breathe. Like the constriction isn’t that their lungs won’t expand, but rather the chest wall won’t expand. Tight feeling in the chest when coughing or laughing or taking a deep breath. Can feel like you have asthma.

What I described in the last paragraph could be from bartonella or possibly Lyme. I believe bartonella has been known to cause stiffness in the chest wall.

I experienced all the chest symptoms I described.

Post Edited (WalkingbyFaith) : 5/28/2022 7:08:11 AM (GMT-6)

My last post was directed to Walkingbyfaith. Not sure if I replied correctly.

Hi! So sorry for the delayed reply! The Lyme test was done through NorthWell Health. It was actually a couple of years ago when this all started. Maybe I should get tested again. And can look at those markers you mentioned. Also I moved to another home and I was feeling better so maybe my old house had mold. And now maybe my new house has it! You are so kind for helping me with this. Its crazy how we have to figure things out for ourselves. At least with the Crohns I know what it is. I know you can relate its so frustrating.