Anyone else here have MCS too?

[Still Here]

My MCS came on concurrently with my CFS. I'm just curious how many others on here have them both?

 

[Wayne]

My MCS came on concurrently with my CFS. I'm just curious how many others on here have them both?

Same here. I used to have HORRIBLE MCS--my body could suffer really badly for weeks after a particularly noxious exposure. Now the MCS is just really bad. In other words, it's a bit better than it was in the past. I think getting rid of all the metal in my mouth, and numerous other things have helped me make modest improvements.

 

[IrisRV]

I'm just curious how many others on here have them both?

MCS was the main symptom that kept me housebound early in my illness. I had a number of near-sycope events in public. The only reason I didn't pass out completely is that I had enough warning that I could lay flat and call for help to get away from whatever was causing the extreme reaction.

It got to the point where I couldn't even go outside. Everywhere I went, including just outdoors, I reacted to something. I had to carry an epipen and sudafed with me everywhere.

For me, the Pall Protocol gave a very large improvement. I have no idea what part of it did the trick or whether it was a combination effect. After that, I still had reactions, but they were much milder and to many fewer things. Some years later I got dysautonomia treatement -- fludrocortisone and verapamil through my ME/CFS specialist, which also helped.

My GP thought they helped the MCS because my primary MCS rxn appeared to be extreme vasodilation followed by extremely high HR. The lack of adequate blood flow from extreme vasodilation was exacerbated by my low blood volume.

Over time I reacted to less and less to the point where I don't seem to react to anything except tree oils -- tea tree oil, eucalyptus, camphor, and the like. Vick's VapoRub and Hall's cough drops will knock me flat very quickly. Fortunately, most tree oils have a strong enough scent that I can smell them and run like hell before I react. And believe me, I do. I've been known to drop my items in the checkout lane and hightail it out of the store.

 

[Farmgirl]

Same here. I used to have HORRIBLE MCS--my body could suffer really badly for weeks after a particularly noxious exposure. Now the MCS is just really bad. In other words, it's a bit better than it was in the past. I think getting rid of all the metal in my mouth, and numerous other things have helped me make modest improvements.

Sorry, but what is MCS?

 

[Wayne]

Sorry, but what is MCS?

Hi Farmgirl,

MCS is Multiple Chemical Sensitivity. It's also referred to as Environmental Illness (EI). People who are severely affected by it can have extreme reactions to various kinds of toxic exposures, including stroke, anaphylactic shock, being bed-ridden for weeks afterwards, etc.

 

[Cort]

My MCS came on concurrently with my CFS. I'm just curious how many others on here have them both?

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.

 

[Cort]

MCS was the main symptom that kept me housebound early in my illness. I had a number of near-sycope events in public. The only reason I didn't pass out completely is that I had enough warning that I could lay flat and call for help to get away from whatever was causing the extreme reaction.

It got to the point where I couldn't even go outside. Everywhere I went, including just outdoors, I reacted to something. I had to carry an epipen and sudafed with me everywhere.

For me, the Pall Protocol gave a very large improvement. I have no idea what part of it did the trick or whether it was a combination effect. After that, I still had reactions, but they were much milder and to many fewer things. Some years later I got dysautonomia treatement -- fludrocortisone and verapamil through my ME/CFS specialist, which also helped.

My GP thought they helped the MCS because my primary MCS rxn appeared to be extreme vasodilation followed by extremely high HR. The lack of adequate blood flow from extreme vasodilation was exacerbated by my low blood volume.

Over time I reacted to less and less to the point where I don't seem to react to anything except tree oils -- tea tree oil, eucalyptus, camphor, and the like. Vick's VapoRub and Hall's cough drops will knock me flat very quickly. Fortunately, most tree oils have a strong enough scent that I can smell them and run like hell before I react. And believe me, I do. I've been known to drop my items in the checkout lane and hightail it out of the store.

Thanks. I wish more research was being done on this.

 

[Wayne]

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

Hey Cort,

You may want to check out this 3-MIN VIDEO. It's by a woman who claims to have recovered completely from MCS, and other CFS-type symptoms. She started her own health clinic after she recovered, in Madison, WI.

She focuses on three major things that helped her recover. At the end of the video, there's a picture of Lake Mendota--which is within the Madison city limits. I had the opportunity to live right on that lake for a couple years or so. Was great!

 

[Cort]

Hey Cort,

You may want to check out this 3-MIN VIDEO. It's by a woman who claims to have recovered completely from MCS, and other CFS-type symptoms. She started her own health clinic after she recovered, in Madison, WI.

She focuses on three major things that helped her recover. At the end of the video, there's a picture of Lake Mendota--which is within the Madison city limits. I had the opportunity to live right on that lake for a couple years or so. Was great!

Thanks Wayne. Come to think of it I think neural retraining program has helped some people. I think its one of those things that works for some and not for others.

 

[Farmgirl]

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.

Cort, maybe, if you feel good enough, you could put a poll up for this issue? I have had this a long time, but it has gotten a lot worse as I moved through life changes. Thanks for all you do! FG.

PS I want to learn to post a poll, but it us too much to learn right now.

 

[Farmgirl]

Hi Farmgirl,

MCS is Multiple Chemical Sensitivity. It's also referred to as Environmental Illness (EI). People who are severely affected by it can have extreme reactions to various kinds of toxic exposures, including stroke, anaphylactic shock, being bed-ridden for weeks afterwards, etc.

@Wayne. Thanks for filling me in. I can tell you for sure u have this! I dropped a bunch of bad symptoms and rashes when I read Food Babe's book and got food with chemicals out if my diet. I also make my own soap, cleaning supplies, etc. This helps, too. Thanks for bringing up the topic!

 

[Wayne]

Thanks for filling me in. I can tell you for sure u have this!

I believe the closest I ever came to dying was from a toxic exposure at an airport in January, 1994. I was exposed to jet fumes when a small plane from Madison, WI landed at O'Hare in Chicago, and we were (unbelievably) forced to walk across the runway with thick amounts of jet fuel fumes in the air.

I almost immediately began to get a headache, and on the ensuing flight to NC, intense pain began to "seep" down into my neck, upper back, and then entire spinal cord. By the next morning, I decided try to take a hot bath to see if I could alleviate some of that pain.

After soaking for a few minutes, the pain actually became much worse. I was barely able to pull myself out of the bathtub, and onto the bed. I thought about calling 911, but realized I was so close to the edge, that any type of activity might be the end of the line for me.

So I decided to calm myself as much as possible. While doing this, I noticed there were no rhythms left in my body. It's not that I'd been aware of these rhythms prior to this experience, it was that once they were gone, I then became aware that I had them at all.

I began "talking" to my body in various ways, letting it know it was going to have whatever assistance I could give it in re-establishing those rhythms. After about 20 minutes, I began to faintly feel the rhythms returning. I now think that jet fuel exposure sent me into a belated anaphylactic shock episode. The consequences of that exposure are still with me today.

Though I'd had ME/CFS for years before this, the shock I experienced sent me into a downward spiral from which I never recovered. I began to work fewer and fewer hours in the ensuing months, and by the fall of that year, I could barely crawl across the floor to the bathroom upon waking up in the mornings.

My last day of any kind of steady employment ended on October 21, 1994. -- It feels almost kind of surreal recounting this experience. But thought I'd do so because it exemplifies pretty dramatically how even one exposure to someone with MCS can have life-altering consequences.

 

[Cort]

I believe the closest I ever came to dying was from a toxic exposure at an airport in January, 1994. I was exposed to jet fumes when a small plane from Madison, WI landed at O'Hare in Chicago, and we were (unbelievably) forced to walk across the runway with thick amounts of jet fuel fumes in the air.

I almost immediately began to get a headache, and on the ensuing flight to NC, intense pain began to "seep" down into my neck, upper back, and then entire spinal cord. By the next morning, I decided try to take a hot bath to see if I could alleviate some of that pain.

After soaking for a few minutes, the pain actually became much worse. I was barely able to pull myself out of the bathtub, and onto the bed. I thought about calling 911, but realized I was so close to the edge, that any type of activity might be the end of the line for me.

So I decided to calm myself as much as possible. While doing this, I noticed there were no rhythms left in my body. It's not that I'd been aware of these rhythms prior to this experience, it was that once they were gone, I then became aware that I had them at all.

I began "talking" to my body in various ways, letting it know it was going to have whatever assistance I could give it in re-establishing those rhythms. After about 20 minutes, I began to faintly feel the rhythms returning. I now think that jet fuel exposure sent me into a belated anaphylactic shock episode. The consequences of that exposure are still with me today.

Though I'd had ME/CFS for years before this, the shock I experienced sent me into a downward spiral from which I never recovered. I began to work fewer and fewer hours in the ensuing months, and by the fall of that year, I could barely crawl across the floor to the bathroom upon waking up in the mornings.

My last day of any kind of steady employment ended on October 21, 1994. -- It feels almost kind of surreal recounting this experience. But thought I'd do so because it exemplifies pretty dramatically how even one exposure to someone with MCS can have life-altering consequences.

Wow....

 

[Adelle]

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

Hi Cort. Wow, not being able to sleep inside must add much more work for you, sorry.
I just recently bought a new bed which is apparently making me sick (shouldn't be, it's natural latex and organic cotton). But I've seen my aunt using a sleep apnea machine, and I seriously considered getting one so that I could sleep comfortably without symptoms. She said that people who use it have their allergies (airborne of course) reduced or cleared up. You've probably considered this, but just in case you hadn't I wanted to share that. Take care.

 

[Wayne]

Here's one of the better articles I've ever read on MCS...

Extreme Chemical Sensitivity Makes Sufferers Allergic to Life

Its sufferers were once dismissed as hypochondriacs, but there's growing biological evidence to explain toxicant-induced loss of tolerance (TILT).

 

[Vaporization]

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

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.

 

[Vaporization]

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.

Have a look at the petrochemicals that we are inadvertently exposed to on an almost daily basis.
Pharmacological and Chemical Effects of Cigarette Additives

We investigated tobacco industry documents and other sources for evidence of possible pharmacological and chemical effects of tobacco additives.
Our findings indicated that more than 100 of 599 documented cigarette additives have pharmacological actions that camouflage the odor of environmental tobacco smoke emitted from cigarettes, enhance or maintain nicotine delivery, could increase the addictiveness of cigarettes, and mask symptoms and illnesses associated with smoking behaviors.
Whether such uses were specifically intended for these agents is unknown. Our results provide a clear rationale for regulatory control of tobacco additives.

Here is a movie about this same subject.

 

[Merida]

I read some interesting stuff about hypothyroidism causing MCS. Do a search on that. Viral thyroiditis is not a rare phenomenom. And, it is appreciated that thyroid tests can be totally normal, yet people respond to T3 or T4 meds. Stop the thyroid Madness is an interesting site.

 

[pbyr]

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.

If the immune system is sucking up all the glutathione then these leaves lower levels for the detoxification pathways. The liver becomes congested and toxins can no longer be moved out and with toxin buildup the body becomes less efficient. The comparison would be that your air filter on your car becomes clogged so the engine will no longer run at optimal levels or may not run at all. The Chinese call this liver stagnation.

Another term that is used is methylation in which glutathione is involved along with other nutrients such as b vitamins and some amino acids (methionine, taurine and cysteine which are the sulfur containing amino acids).

Supplementing with glutathione was not effective until I used the liposomal form. However, I would caution using the recommended doses (1 tsp) which caused a strong purge, which set me back. Reducing the dose to 1/8 to 1/4 teaspoon worked. I found it important to use some type of vacuum that would sweep out the toxins which includes charcoal (bulk), chlorella (Clean Chlorella) and rLipoic acid.

Magnesium plays a key role in the production of glutathione. Magnesium comes in many forms and I found the best to be magnesium lysinate and magnesium glycinate (Doctor's Best). I also found that the b vitamins are essential, most of these support methylation. Vitamins B6 and B2 are always needed in larger amounts.

There are a number of other supplements that I used which support liver health including phosphatidylcholine, milk thistle and acupressure points. Doing this multi pronged approach resolved the MCS issue for me.

disclaimer: the information provided should be considered educational, check with your healthcare provider before starting any treatment.

 

[Wayne]

There are a number of other supplements that I used which support liver health including phosphatidylcholine, milk thistle and acupressure points. Doing this multi pronged approach resolved the MCS issue for me.

Hi @pbyr

Thanks for your informative post, and congratulations on resolving your MCS; that's QUITE an accomplishment.

My MCS has gotten better over the years, but I still deal with it on a regular basis. A couple things that helped me are milk thistle seed tea (which I buy on Amazon by the pound), and NAC. I also do various other things to support liver function and health (like castor oil packs).