My body can't tolerate any medication?

[xak53]

Sorry I've taken so long to get back and answer your question. My mom and I both have MCS (multiple chemical sensitivies) and when we did the 23andme we both show a lot of polymorphisms (if that is the correct word) in both the stage 1 and stage 2 liver detox areas so I suspect that along with some candida and metal toxicity issues may be to blame.

MCS is a living hell at times as I am sure you will know one of my worst triggers is perfume i.e washing powders/liquid, soap, air fresheners, toilet cleaners and that's just one chemical I have a seemingly inexhaustible list of chemical that send me into terrible reactive states and some people think just making up stories which is so frustrating as you may know?

 

[Judee]

I know and people just layer themselves and their homes in all these smells and don't even realize what they are doing. In addition to the toxins in the fragrances, I think there's an addictive feature to them as well.

I feel so sad about your mom. It's so frustrating when doctors make things worse when they are suppose to make things better.

 

[Wayne]

I have a seemingly inexhaustible list of chemical that send me into terrible reactive states

Hi @xak53, Hi All,

I thought this was one of the best (but long) articles I've read on MCS. Contains in-depth descriptions of what can happen when the body and/or brain become traumatized by "toxicants", and how this can lead to an inability of the brain/neurological system(s) to restore homeostasis...

Toxicant Induced Loss of Tolerance​

 

[Judee]

I remember reading this article before. What always makes me mad is when I get the to point where the psychiatrists she was working with were lining up to dispute her findings. Even Dr. Andrew Weil who is an Integrative Medicine Doc had an article where he thought MCS was something psychological instead of physiological. So frustrating!!!

Anyway, to get off my soapbox, I really like Andy Cutler's explanation about what is happening in stage 1 and stage 2 detox for people with MCS:
http://www.livingnetwork.co.za/chelationnetwork/food/liver-detox-pathways/
http://www.livingnetwork.co.za/chelationnetwork/food/liver-detox-pathways/

...also I know we have sulfur/thiol issues that seem to compound it.

I will say one more thing. I did get relief one time when I was trying to do my own version of the the Wilson Temperature protocol using an old t3 prescription we had on hand and lowering the dose to probably a 20th of what Dr. Wilson prescribes. Even on the minute doses, my low body temperatures were coming up and I was feeling better.

During that time I went into our Chiropractor's office which is usually pretty saturated with perfume from the patients and even though I could smell the heavy odor, I felt no ill affect at all. It was really a strange sensation.

Unfortunately, it was an old prescription so I didn't have enough to keep going with the protocol and even though I found a doctor in my area who said he has used that before he prefers try other things instead.

I hope you don't mind me adding that. I know you are super sensitive to medicines so that last part probably wouldn't be helpful to you but I thought maybe someone else with MCS might find it helpful.

 

[Judee]

I just noticed you have another thread on this topic. Reading some of that, I'm afraid there may be a bit of overlap in my comments. Hope something will be helpful to you in all this. I'm so glad for this website.

 

[outdamnspot]

MCS is a living hell at times as I am sure you will know one of my worst triggers is perfume i.e washing powders/liquid, soap, air fresheners, toilet cleaners and that's just one chemical I have a seemingly inexhaustible list of chemical that send me into terrible reactive states and some people think just making up stories which is so frustrating as you may know?

Do you mind me asking what a 'reactive state' looks like for you? I've noticed that as my physical state has gotten worse lately, even air fresheners etc. will trigger a 'crash' in me; I was cleaning up dog pee using bleach once and almost thought I was going to faint. I've read about this occurring with severe CFS, but was wondering if MCAS is somehow different.

 

[xak53]

Hi @xak53, Hi All,

I thought this was one of the best (but long) articles I've read on MCS. Contains in-depth descriptions of what can happen when the body and/or brain become traumatized by "toxicants", and how this can lead to an inability of the brain/neurological system(s) to restore homeostasis...

Toxicant Induced Loss of Tolerance​

Very good read ! this is how my life is to and it's nice to know there are others out there with similar conditions ty.

 

[xak53]

Do you mind me asking what a 'reactive state' looks like for you? I've noticed that as my physical state has gotten worse lately, even air fresheners etc. will trigger a 'crash' in me; I was cleaning up dog pee using bleach once and almost thought I was going to faint. I've read about this occurring with severe CFS, but was wondering if MCAS is somehow different.[/QU

Do you mind me asking what a 'reactive state' looks like for you? I've noticed that as my physical state has gotten worse lately, even air fresheners etc. will trigger a 'crash' in me; I was cleaning up dog pee using bleach once and almost thought I was going to faint. I've read about this occurring with severe CFS, but was wondering if MCAS is somehow different.

Thanks for your interest ..........my reactive states consist of breathing a chemical such as "chemical fragrance" the volatile organic chemicals (VOCs) emitted by fragrance products cause me to have headaches; eye, nose, and throat irritation; nausea; forgetfulness; loss of coordination inability to communicate clearly, fragrances are respiratory irritants and sensitizers, which do trigger an anaphylactic like reaction in me consisting of tightening of throat and wheezing also I get extreme irritability that can make me feel very angry as I get an adrenaline (Epinephrine) rush which of cause is the "fight or flight protection hormone" and then this is followed by a cardiac arrhythmia event making me feel like I ‘am going to have a heart attack after all of this I become very exhausted and tied but unable to sleep leading to an aggravation of all my ME/PVFS symptoms.

 

[xak53]

I know and people just layer themselves and their homes in all these smells and don't even realize what they are doing. In addition to the toxins in the fragrances, I think there's an addictive feature to them as well.

I feel so sad about your mom. It's so frustrating when doctors make things worse when they are suppose to make things better.

Judee it is a crazy world out there and I find most people are like headless chickens!
And yes I think there is an addictive feature in some of the commonly used chemicals.
Thank you for your words about my mother.

 

[Wayne]

And yes I think there is an addictive feature in some of the commonly used chemicals.

If I recall correctly, @brenda has some interesting insights and knowledge on the addictive aspects of certain chemicals and/or heavy metals. I hope she can respond, as I would be interested in reviewing this topic again.​

 

[brenda]

@Wayne

I cannot recall posts from me about the addictive qualities of certain chemicals/metals, though that might be my memory at fault, but I have spoken about my own mcs which was very severe. It started in childhood mercury poisoning and suddenly worsened when I was poisoned with pesticide (carbamate) and then even worse when I contracted Lyme. It got so bad that I could not wash from the tap (faucet) due to chlorine and had to use bottled water.

It is now very much better since I improved my overall health through diets, first the macrobiotic, which saved my life, then just very healthy till the autoimmune protocol and finally, the low fat high carbo, no oil sugar or salt, plant based, which has restored my sense of small after 4 weeks and is shifting obstinate weight therefore improving insulin sensitivity.

Now I don't react to most chemicals or only a bit.

 

[Lalia]

Hello - sorry to hijack this post but I wondered if anyone else has seen this happen with food instead of chemicals?

I became intolerant to gluten/ dairy/ sugar after a barium swallow procedure and then my body seemed to ‘lock down’ after trying a herbal protocol to treat SIBO. The foods and supplements I was taking at the time are fine, and I haven’t lost any further tolerance, but trying to introduce any new foods or supplements gives me toxic reactions (fatigue, SOB, nausea etc). It’s like my body is locked into place and won’t let anything else in.

This post caught my interest because I’ve read the article @Wayne posted before, and thought it was similar to my situation. As usual, all the doctors and NDs I’ve seen have been stumped.

 

[Wayne]

anyone else has seen this happen with food instead of chemicals?

Hi @Lalia

Sorry to hear how your body has gotten locked into place regarding the foods you can tolerate. Unfortunately, that seems to be a common condition amongst us with ME/CFS.

Recently, I feel I've gotten "locked" into a new situation, which is an onset of severe, life-altering tinnitus and hyperacusis on Feb. 3 of this year. Because of this development, I'm now feeling more motivated than ever to try to "unlock" the patterns of interplay between the brain and various critical functions of the body. Such as the ears, or immune system, etc.

I've read some people with tinnitus have success with various energetic therapies, such as homeopathy, neurofeedback, essential oils, etc. I'm currently focusing on reflexology and tuning forks to try to reset some of the interconnecting brain/inner ear rhythms in some beneficial way.

Severe tinnitus or and/or hyperacusis are generally speaking, notoriously difficult to treat. Because of that degree of difficulty, I'm feeling somewhat hopeful that if I can find something that works for unlocking my tinnitus patterns, I can do the same with my ME/CFS patterns. -- I guess I'm just an eternal optimist!

Good luck in finding some solutions for yourself!

Best, Wayne​

 

[Wolfcub]

I have a strong aversion/dislike of commercial perfumes. I can just about tolerate Dior "Eau Sauvage". But I don't even wear it. I can just about handle the scents in detergents. They don't bother me, and am okay generally with some essential oils but not all of them. Some absolutely throw me backwards to get away from them!
Natural scents, like flowers, herbs etc I love and can handle very nicely. Even the smell of garlic and onions.

But pharmaceutical drugs....I could never tolerate. I had a very bad reaction once on an antibiotic. I thought I was having a heart attack. The only one antibiotic I can manage is amoxycillin. It makes me feel nauseous but I can handle it. Another drug I can manage to handle is Ibuprofen. Everything else....I am so sensitive to. But I always have been, it's not new.

That's the reason I always use herbal medicine. I only once had a bad reaction to a herb, and that was Siberian Ginseng. I can't take that. It gives me splitting headache.