Photo Essay on SEVERE MCS

[Dreambirdie]

This amazing photo essay on MCS ran in the NY Times back in September. The author had it herself and recovered by doing experimental neural retraining.

Does anyone know anything about this? or have any personal experience with it?

I have been living with both MCS and CFS for a few decade, and though I have never been homeless, I have at times been driven from my home by neighbors spraying toxic chemicals.


http://www.nytimes.com/interactive/2011/09/18/opinion/sunday/20110918_OPINION_ALLERGYGOBIG.html#1

 

[xrayspex]

intriguing, I googled around and found this, it involves cbt which is dicey to mention with cfs. I have a friend learning about brain spotting, a type of therapy that works with real physical and emotional pain that is from both physical and emotional trauma, she thinks all sorts of things can get cured from it. for desperate people perhaps its something to try when nothing else is being offered up......as long as the govmt keeps trying to figure out the retrovirus part

Gupta is another example probably of neural retraining

 

[xrayspex]

oh here we go, just found this, really addresses the question:

Q: What is your opinion of the Dynamic Neural Retraining Program?

A: From an integrated medicine standpoint, the Dynamic Neural Retraining Program (DNR) may be useful for some people with MCS as a complement to the work of Pall, Ziem, Miller, Bell, and others. However, we must keep in mind that the DNR is only a partial explanation of MCS and is based primarily on anecdotal evidence.

(more at: thetruthaboutmcs.blogspot.com/2010/10/what-is-your-opinion-of-dynamic-neural.html


and then I found this which is excellent at explaining one aspect that can be related to mcs which is very organic and physical, I have suspected porphyria in myself of some sort after I learned about it, and this is where I get stumped at how a brain retraining approach could completely help if one has an issue like this...sort of like when you have diabetes, thinking positive thoughts wont be enough to regulate yr blood sugar:

http://www.mcsrr.org/factsheets/porphyri.html

 

[Dreambirdie]

Thanks xrayspex. I am going to bookmark that porphyria info. I already follow most of the guidelines, but there were a few good reminders.

 

[xrayspex]

hey dreambirdie
do you tend to eat a lot of carbs, and sugar even? Even before I had CFS when I was in my late teens I had recontracted mono or something and after that when on the adkins diet and I got sick again! I realized that every time I restrict my caloric and carb intake I tend to get sick or feel rotten, so its my excuse to indulge in sugar. And before I realized couldnt handle sun in last 10 years when I pushed it and spent time out in 90 degree heat and got like sunstroke a couple times having sugary shakes helped me a little. What I dont like tho is trying to figure out how to get off this weight I have put on in last few years if I feel better with more carbs. I am even able to talk walks and thats not cutting it to keep weight down.

 

[Dreambirdie]

No, I stay away from sugar and stick to an all organic Paleo type of diet. I do include some occasional yams, potatoes or rice, especially when I am more active. And I eat berries and other fruit that is in season during the summer.

Eating refined carbs has never worked well for me. I quit eating sugar in 1977 and haven't had any since.

 

[xrayspex]

dreambirdie you're amazing! I have tried and would always fail feeling sick, it was unbearable, so I gave up trying, try to limit it and eat other healthy stuff most of day to make up for it but after reading about porphyria I thought that might explain why I feel better to include generous carbs daily.

 

[Dainty]

That's quite the picture! I actually have that exact porcelain mask. I'm surprised she was able to tolerate what appears to be a plastic tube with it rather than the stainless steel tubing.

Edit: just found the little button to view the other pictures. Thanks so much for sharing, dreambirdie, these are really powerful.

intriguing, I googled around and found this, it involves cbt which is dicey to mention with cfs. I have a friend learning about brain spotting, a type of therapy that works with real physical and emotional pain that is from both physical and emotional trauma, she thinks all sorts of things can get cured from it. for desperate people perhaps its something to try when nothing else is being offered up......as long as the govmt keeps trying to figure out the retrovirus part

Gupta is another example probably of neural retraining

Interesting info on the brain spotting. Cranial osteopathy is another modality that focuses on releasing traumas that have been "locked in", from a timeline going all the way back to fetal development in the womb. It's done through physical manipulation by the osteo. Bones harden with trauma, and when my osteo felt my head he said I was literally hard-headed. Ha! The effort is to release that and gently what's misaligned back to the proper positions.

I'm new to it but so far as a treatment it's looks quite promising. I don't really care whether or not it's the answer, so long as it continues to fix problems resulting in tangible improvement then I know something's going the right direction.

 

[merylg]

Hi Dreambirdie,
Thanks for sharing this powerful Photo Essay on MCS. As a sufferer it certainly struck a chord with me! One pic I really related to was the girl trying to fill her car with petrol
That could be me!!! It knocks me for 6 (like hitting a cricket ball so far that it goes over the boundary on the full to score 6 points!)
I try to con a family member into doing it for me

I also relate to wanting to sleep out in the open for "fresh air"...and being too weak to take a bath, 'cause you can't get out of the tub...and the tiled room with no exposure to timber or painted walls.

 

[Dreambirdie]

Thanks Everyone for chirping in on your experiences.

Meryl--I never fill the gas tank anymore, just let my partner do it.
Dainty--cranio-sacral work has helped me a bit too.
Xrayspex--I would get much too sick from junk food, so there is no temptation at all about eating it.

What really irks me is the amount of toxins that people unconsciously slather on their bodies and wash their clothes with. Really not any different than second hand smoke. It makes being in public impossible for me. It's just appalling to read about them.

http://lewrockwell.com/mercola/mercola164.html
http://www.sciencedaily.com/releases/2008/07/080723134438.htm
http://www.naturalnews.com/001061.html
http://www.jonbarron.org/natural-health/bl110906/toxins-laundry-detergent-dryer-sheets
http://www.safelaundryguide.com/Detergents_with_Dioxane.html

 

[Annesse]

Thanks for this Dreambirdie. The photos are unreal. And thanks for the info on Porphyria xrayspex. Lots of good info on the link you posted. I think the info on porphyria and burning skin on exposure to the sun is very interesting. Here is an additional link that shows the heme pathyway.
http://www.lifescript.com/Health/A-...Aodnn8b0Q&trans=1&du=1&ef_id=SOFN8328gVkAAI69

Heme is a Fe2+ complex. The biosynthesis of heme occurs in all human cells. During this biosynthesis, toxic compounds called porphyrins are formed. Under normal conditions, these toxic compounds (porphyrins) are quickly transformed into heme, which is not toxic. These porphyrins then accumulate in the cell itself and then in extracellular tissue causing porphyria. The following information describes how testing is done for porphyria.

"Two other suggestive indicators of pophyria which don't require the more challenging 24 hour collection of specimens in measuring B12 deficiency both directly and also from blood elements which are affected by B12 such as methyl malonate levels and homocysteine levels." Without B12, the heme pathway cannot be completed.

I know that pophyria can be caused by other conditions. Sometimes, it is genetic. But, if you are already suffering from a disease that has a known B12 deficiency at its core, then that is the first thing I would suspect.

 

[Annesse]

The inability to regulate iron would also play a role in porphyria. Here is an amazing study that shows the same enzymes responsible for iron regulation in the body (proteases) are also responsible for transport and absorption of B12.

http://ndt.oxfordjournals.org/content/23/10/3063.extract

 

[Annesse]

Here is some more info from the Townsend Newsletter on why the lack of enzymes would cause a person to be unable to adapt to chemical exposure.

"The body adapts to chemical exposure by producing enzymes, which are used in the process of detoxification. The detoxification works though enzyme reactions in every cell in the body. A healthy person with a high detox enzyme level can handle 40 times the amount of a toxic chemical as someone with a low enzyme level."

 

[Dreambirdie]

Here is some more info from the Townsend Newsletter on why the lack of enzymes would cause a person to be unable to adapt to chemical exposure.

"The body adapts to chemical exposure by producing enzymes, which are used in the process of detoxification. The detoxification works though enzyme reactions in every cell in the body. A healthy person with a high detox enzyme level can handle 40 times the amount of a toxic chemical as someone with a low enzyme level."

My enzymes are undoubtedly shot. I struggle with detoxification constantly. Having such extreme MCS limits my life enormously.

Here's my latest toxin disaster: I ate some fish last Saturday evening, something I rarely do because fish cannot be "organically" raised, at least not to my knowledge, so it's like Russian roulette to know if the fish is toxin-free. As it turned out, the fish I ingested must have been swimming through pesticides, PCB's or other hideous toxins. Within 8 hours I was very ill from it, and ended up bedridden for 4 days with a severe MCS reaction. After that my immune system crashed, and now I have a cold. This has happened before when I've eaten fish, but not every time, and not ever this badly. Sometimes it's been perfectly okey dokey, no problem at all. But at this point, after what I went thru this week, fish will be banned from my food list forever. Unless it is grown in a tank with filtered water, I will not ever eat it again.

 

[Dreambirdie]

Basically what you are doing is training the brain out of conditioned responses. Some MCS may be a spreading phenomenon based on an overactive stress response and or underlying genuine disease (that's my interpretation--not theirs. They claim the whole thing can be cured kit and kaboodle). The exercises, I don't know exactly what they are, but I get the impression they are a specific repeatable form of self directed neurofeedback, so that you create good endorphins and calm/connect parasympathetic states during exposures, helping retrain the neurological system so that it can tolerate things. People are posting on Planet Thrive about being able to tolerate a cut lime on the restaurant table, or stand in the laundry detergent aisle, or sit in a tire place and feel okay.

I've tried exercises like this in the past, and they never worked for me. On top of it, the practitioners who were instructing me got a bad attitude about it, as if it was MY FAULT their schtick didn't work. No thank you, I guess I will pass.

What helps me more than anything is being by the ocean, for at least an hour or more. Ocean air is my favorite detox agent. It's also a very good anti-depressant.

 

[Nielk]

The one thing that I have found helpful at times is neurofeedback. You need to go to a practitioner though. It only helps me when I'm not at my worst and it does hold for a while but after a few months I need some more sessions.