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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Multiple drug and chemical hypersensitivity

Messages
66
Location
Cornwall, UK.
DESPERATE RANT
I am a 54 y/o male suffering from multiple drug and chemical hypersensitivity and myalgic encephalomyelitis for 8 years + and it's sending me crazy! Every time I breath any household or commonly used chemicals or take any drug and the wrong type of food I have a severe reaction consisting of nose, eye irritation, headache, lung burning, massive adrenaline release with extreme anger which means I have to keep away from people including my carer, light intolerance, noise intolerance/misophonia and rapidly moving itchy skin all over my body which prevents any beneficial sleep and that excludes all my other symptoms Cluster headaches, migraine, sciatic nerve compression pain and a whole heap of common ME symptoms. I am told I am complicated by medical professionals with no real answers. I find living like this is intolerable and my conditions make me very isolated and I seek to make communication with similar people or any potential helpful answers please.
 

Alexi

Senior Member
Messages
124
Location
UK
Apart from the extreme anger.....throw in bowel and gastric issues and we can start our own support group !
 
Messages
66
Location
Cornwall, UK.
Oh yes. Being told you are a medical conundrum isn't very helpful is it ?
So true.......how do you cope do you have any tips or advice? as the only thing that I have found that helps is to stay away from every thing that effects me and that is difficult to say the least.
 

pattismith

Senior Member
Messages
3,947
Hello xak, how bad is your situation...

Do you know if you had a toxic exposure of any kind before these symptoms started?

(pesticids, formaldehyde, solvants, acids, flamme retardants, or any other)
 
Messages
66
Location
Cornwall, UK.
Hello xak, how bad is your situation...

Do you know if you had a toxic exposure of any kind before these symptoms started?

(pesticids, formaldehyde, solvants, acids, flamme retardants, or any other)

Not in the last 13 years but I worked for a pharmaceutical company 38 years ago and was exposed to any number of dangerous chemicals and drugs and I also used to work with toxic paints and chemicals when I was a builder 13 years ago particularity wood preservative so yes and thinking back I was frequently ill after using wood preservative and took many sick days which led to me stopping work through ill health ..........and my situation is bad say 8.5 out of 10.
 
Messages
66
Location
Cornwall, UK.
I don't know if this is a relevant answer, but your symptoms sound an awful lot like MCAS. Here's a link to an article which may give you some insights on whether this is the case for you... Good luck finding something that helps you address some of your sensitivity problems!

The agony of mast cell activation syndrome (MCAS)

Thank you Wayne MCAS looks like yet another possibility for my chronic conditions it fits very well and I will be doing my sherlock holmes self investigation.
 

pattismith

Senior Member
Messages
3,947
Not in the last 13 years but I worked for a pharmaceutical company 38 years ago and was exposed to any number of dangerous chemicals and drugs and I also used to work with toxic paints and chemicals when I was a builder 13 years ago particularity wood preservative so yes and thinking back I was frequently ill after using wood preservative and took many sick days which led to me stopping work through ill health ..........and my situation is bad say 8.5 out of 10.
it may be that toxic exposure have been triggering co-factors in some of us. They can activate allergies, disrupt hormons, immune function, etc.

If you are able to identify some of your exposures, it could help understanding your condition.

The first time I was seriously exposed to formaldehyde, I was a student, 30 years ago. I was again exposed to it more heavily when I started to work, and also to organophosphates.

Do you know what kind of wood preservated you were exposed to?
 
Messages
66
Location
Cornwall, UK.
Formaldehyde was def one of the chems in wood preserver plus lots of Titanium Dioxide, epoxy polymers, VOCs, toluene, xylene, ethyl acetate, methylene, chloride, and glycol to name but a few.
But also when I worked for Syntex pharmaceutical company I had exposure to naproxen, estrogen progesterone and so many more drugs breathing the dust in the air often with no respirator and I just read this below about syntex. Now I am thinking !!
And organophosphates for you is a particularly nasty chem associated with Nerve Agents or Chemical Weapons and pesticides as I expect you know.

[Syntex's submission of a fraudulent toxicology analysis of naproxen largely led to the Food and Drug Administration's uncovering of extensive scientific misconduct by Industrial Bio-Test Laboratories in 1976]

They never told us about any of the below health warnings and I was frequently covered in naproxen dust and breathed lots of it and went to the poison center twice for breathing problems this was around 1980 and the drug had just been invented.

Description of First Aid No data available. Measures: Hold eyelids apart and flush eyes with plenty of water for at least 15 minutes. Have eyes examined and tested by medical personnel. In Case of Eye Contact: Immediately wash skin with soap and plenty of water for at least 15 minutes. Remove contaminated clothing. Get medical attention if symptoms occur. Wash clothing before reuse. In Case of Skin Contact: Wash out mouth with water provided person is conscious. Never give anything by mouth to an unconscious person. Get medical attention. Do NOT induce vomiting unless directed to do so by medical personnel. In Case of Ingestion: Remove to fresh air. If not breathing, give artificial respiration or give oxygen by trained personnel. Get immediate medical attention. In Case of Inhalation: 4.1
https://www.caymanchem.com/msdss/70290m.pdf
 

pattismith

Senior Member
Messages
3,947
"Toluene elevates corticosterone on inhalation 42 . The effects of several drugs and chemi- cals on the structure of adrenal gland were described by Ribelin 43 . Benzene and toluene exposure stimulated hypothalamic pituitary adrenocortical activity. Elevated corticosterone has also been reported to inhibit IL-2 production and impair immunocompetence."
"Toluene inhalation induces the adrenocortical hypertrophy in rat"

"An adrenal dependent leucopenia aftershort term exposure to air borne irritants viz. acetic acid, benzyl chloride, 1,1-dichlorobenzene, ethyl acetate, ethyl acrylate, formaldehyde, isophorane, mesityloxide, phenol, styrene, toluene and vinyl toluene was reported by Brondeau"

"Gasoline containing benzene, toluene 1,3-butadiene, ethyl benzene, xylene, trimethyl pentane, methyltertbutylethane (MTBE) produced the cancer of pancreas in workers engaged in oil refinary and petrochemical industry"

"Effects of various occupational agents’ viz. benzene, dioxane, styrene, tetrachloroethylene and toluene on the endocrine glands including pituitary were also reported"

etc...you may have a lot to investigate with all the chemicals you were exposed to....:thumbdown:

https://pdfs.semanticscholar.org/7d61/228b35d65c41499bf06098415bc96b367918.pdf
.
 

Wayne

Senior Member
Messages
4,310
Location
Ashland, Oregon
Thank you Wayne MCAS looks like yet another possibility for my chronic conditions it fits very well and I will be doing my sherlock holmes self investigation.
Hi @xak53,

I just got an email which gives links to two other articles connected to the article I linked for you. Thought I'd pass it along...

Calming the immune system
Part 3 of LYME SCI blogger Lonnie Marcum''s series on mast cell activation (MCAS), which can make Lyme patients allergic to many foods and other environmental factors. READ MORE.

Part 1: Intro to MCAS--when the immune system goes haywire.

Part 2: The agony of MCAS: when my daughter appeared to be in a death-spiral.
 
Messages
66
Location
Cornwall, UK.
Hi @xak53,

I just got an email which gives links to two other articles connected to the article I linked for you. Thought I'd pass it along...

Calming the immune system
Part 3 of LYME SCI blogger Lonnie Marcum''s series on mast cell activation (MCAS), which can make Lyme patients allergic to many foods and other environmental factors. READ MORE.

Part 1: Intro to MCAS--when the immune system goes haywire.

Part 2: The agony of MCAS: when my daughter appeared to be in a death-spiral.
Thank you Wayne I will read and report back.
 
Messages
66
Location
Cornwall, UK.
"Toluene elevates corticosterone on inhalation 42 . The effects of several drugs and chemi- cals on the structure of adrenal gland were described by Ribelin 43 . Benzene and toluene exposure stimulated hypothalamic pituitary adrenocortical activity. Elevated corticosterone has also been reported to inhibit IL-2 production and impair immunocompetence."
"Toluene inhalation induces the adrenocortical hypertrophy in rat"

"An adrenal dependent leucopenia aftershort term exposure to air borne irritants viz. acetic acid, benzyl chloride, 1,1-dichlorobenzene, ethyl acetate, ethyl acrylate, formaldehyde, isophorane, mesityloxide, phenol, styrene, toluene and vinyl toluene was reported by Brondeau"

"Gasoline containing benzene, toluene 1,3-butadiene, ethyl benzene, xylene, trimethyl pentane, methyltertbutylethane (MTBE) produced the cancer of pancreas in workers engaged in oil refinary and petrochemical industry"

"Effects of various occupational agents’ viz. benzene, dioxane, styrene, tetrachloroethylene and toluene on the endocrine glands including pituitary were also reported"

etc...you may have a lot to investigate with all the chemicals you were exposed to....:thumbdown:

https://pdfs.semanticscholar.org/7d61/228b35d65c41499bf06098415bc96b367918.pdf
.

Wow that's a read and a half.....very interesting but where do I start with so many drugs and chemicals that I have been exposed to?? most of them will cause health problems I think it will be neigh on impossible to nail it down to 1 or 2 chems/drugs/ME/madness but I will keep on looking and reading as it's all I can do with a case so complex as mine is and medical professionals have not got the time/money required to find the truth/source.
Thank you for taking the time it has helped somewhat.:nervous:.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
MCAS can be autoimmune, triggered by a viral or bacterial infection. Attached is some info on diagnosing and treating it.

However, given what you've said above, removing toxins from your body can be quite helpful, but challenging to do.

Getting an excellent functional medicine or naturopathic doctor to help you could be extremely helpful. It would involve opening/feeding Phase I and II detoxification pathways, increasing glutathione, ensuring liver and gallbladder are working properly and being able to bind and eliminate toxins.

Given your sensitivities, it would have to be done carefully, so as not to trigger anaphylaxis, but in the long run, you'd likely have a much higher quality of life.
 

Attachments

  • Afrin Drugs for MCAS.pdf
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  • Afrin 2014 Presentation of MCAS.pdf
    1.9 MB · Views: 8
Messages
66
Location
Cornwall, UK.
MCAS can be autoimmune, triggered by a viral or bacterial infection. Attached is some info on diagnosing and treating it.

However, given what you've said above, removing toxins from your body can be quite helpful, but challenging to do.

Getting an excellent functional medicine or naturopathic doctor to help you could be extremely helpful. It would involve opening/feeding Phase I and II detoxification pathways, increasing glutathione, ensuring liver and gallbladder are working properly and being able to bind and eliminate toxins.

Given your sensitivities, it would have to be done carefully, so as not to trigger anaphylaxis, but in the long run, you'd likely have a much higher quality of life.
Looks like a very interesting read and thank you, but regarding toxins I have taken Homeopathic Sulphur @ 30c 200c and 1m potency this will clear the toxins out on the deepest cellular level in fact it made me very ill for about 4 months and I decided NOT to take Homeopathic remedies any more as it is entirely possible that I have made myself even more hypersensitive (a strong remedy reaction) and I had a similar reaction with Homeopathic Petroleum before the Sulphur. In addition I eat only the highest quality ORGANIC food and drink only bottled spring water so I am at a loss to the root cause/s at this point :balanced:
 

jason30

Senior Member
Messages
516
Location
Europe
MCS is a fast phase 1 and slow phase 2 liver pathway. I second the advice of Learner1.
Invest time to balance phase 1 and phase 2. And study phase 2 ( methylation, vitamins/minerals associated with phase 2, glutathione and more).
Choline and calcium-d-glucarate will alleviate the MCS symptoms.
 
Messages
66
Location
Cornwall, UK.
MCS is a fast phase 1 and slow phase 2 liver pathway. I second the advice of Learner1.
Invest time to balance phase 1 and phase 2. And study phase 2 ( methylation, vitamins/minerals associated with phase 2, glutathione and more).
Choline and calcium-d-glucarate will alleviate the MCS symptoms.
I take organic vitamins and minerals but I am perticulary interested in the vitamins/minerals mentioned and Choline is very intresting but I have to say we/you are assuming that I have MCAS and I may well have something else? The problem I face is to find the cause rather than treat the symptoms but I do think we/you are on the right track even though I may arrive at a different station if you get my meaning.
Thanks for your input it is appreciated.