HELP....with ES and EMF/....any support groups out there?

Hello everyone I am pretty new on here. I currently work as a companion to a woman who sufferes severely from ES..she cannot be near any light at all (not even a candle or a lanter) and is very sensitive to smells as well. She had me come on the computer (becasue she cannot) and see if there are any support groups in the CT area? Is anyone on here homebound as well? any peer support groups anyone knows of? any help or advice would be much appreciated!!!

Welcome to the group!

Being sensitive to light can sometimes be a simple vitamin deficiency.
One of the symptoms of a Vitamin B2 (Riboflavin) deficiency is an
abnormal sensitivity to light.  You could check on the foods known
to be high in this vitamin, and see if she is eating any of these.

I think there are also prescription drugs and also nutritional
supplements that can cause sensitivity to light.

I don't know of any ES support groups in Connecticut, although maybe
there are others here who know about such things.  Generally it seems
like there are NOT local support groups for ES, although perhaps there
are for more well-known similar problems, like chemical sensitivity.

If you have any local practitioners of alternative medicine
(e.g. naturopathic doctors, chiropracters who also do nutrition, etc.)
in your area, they might know of support groups, or also help solve
the cause of these problems.

Marc

On Tue, 08 Mar 2011 20:24:47 -0000, "j_nesdale" <[hidden email]> said:
> Hello everyone I am pretty new on here. I currently work as a companion
> to a woman who sufferes severely from ES..she cannot be near any light at
> all (not even a candle or a lanter) and is very sensitive to smells as
> well. She had me come on the computer (becasue she cannot) and see if
> there are any support groups in the CT area? Is anyone on here homebound
> as well? any peer support groups anyone knows of? any help or advice
> would be much appreciated!!!
>

thank so much! Yes I do know there is very little in CT-but do you know of any support groups maybe in the U.S or outside of CT but not overseas perhaps?

--- On Tue, 3/8/11, Marc Martin <[hidden email]> wrote:


From: Marc Martin <[hidden email]>
Subject: Re: [eSens] HELP....with ES and EMF/....any support groups out there?
To: [hidden email]
Date: Tuesday, March 8, 2011, 4:05 PM


 



Welcome to the group!

Being sensitive to light can sometimes be a simple vitamin deficiency.
One of the symptoms of a Vitamin B2 (Riboflavin) deficiency is an
abnormal sensitivity to light. You could check on the foods known
to be high in this vitamin, and see if she is eating any of these.

I think there are also prescription drugs and also nutritional
supplements that can cause sensitivity to light.

I don't know of any ES support groups in Connecticut, although maybe
there are others here who know about such things. Generally it seems
like there are NOT local support groups for ES, although perhaps there
are for more well-known similar problems, like chemical sensitivity.

If you have any local practitioners of alternative medicine
(e.g. naturopathic doctors, chiropracters who also do nutrition, etc.)
in your area, they might know of support groups, or also help solve
the cause of these problems.

Marc

On Tue, 08 Mar 2011 20:24:47 -0000, "j_nesdale" <[hidden email]> said:
> Hello everyone I am pretty new on here. I currently work as a companion
> to a woman who sufferes severely from ES..she cannot be near any light at
> all (not even a candle or a lanter) and is very sensitive to smells as
> well. She had me come on the computer (becasue she cannot) and see if
> there are any support groups in the CT area? Is anyone on here homebound
> as well? any peer support groups anyone knows of? any help or advice
> would be much appreciated!!!
>








     

[Non-text portions of this message have been removed]

taurine is supposed to help somewhat with the smells issue
i have had it at different times and Cutler (Amalgam illness) presensts a graph from genova I believe that illustrates phase 1-phase 2 of the liver phases.

according to cutler, people that have fast phase 1-slow phase2 liver processing suffer the most from mcs-mult chem sensitivites. i was tested as having this liver activity

what worked quite well for me with the fumes/smells and brain fog was niacinamide NOT Niacin, they are very different and niacin actually speeds up phase 1 while niacinamide slows it down, which is want you want to try to do.

'you may want to try this

has she ingested a lot of silver such as collidal silver..it can apparently affect you eyesight

personally u might want to get a hair test done...to see what heavy metals seem to be evidenced in her body. I believe directlabs will allow you to order directly. i will check and post tomorrow

take care
michael

--- In [hidden email]
, "j_nesdale" <j_nesdale@...> wrote:
>
> Hello everyone I am pretty new on here. I currently work as a companion to a woman who sufferes severely from ES..she cannot be near any light at all (not even a candle or a lanter) and is very sensitive to smells as well. She had me come on the computer (becasue she cannot) and see if there are any support groups in the CT area? Is anyone on here homebound as well? any peer support groups anyone knows of? any help or advice would be much appreciated!!!
>

She may have an eye problem like Glaucoma she may need to
see a doctor and get checked out and get her pressures checked.

Best wishes Xyz



--- In [hidden email], "j_nesdale" <j_nesdale@...> wrote:
>
> Hello everyone I am pretty new on here. I currently work as a companion to a woman who sufferes severely from ES..she cannot be near any light at all (not even a candle or a lanter) and is very sensitive to smells as well. She had me come on the computer (becasue she cannot) and see if there are any support groups in the CT area? Is anyone on here homebound as well? any peer support groups anyone knows of? any help or advice would be much appreciated!!!
>

Hi Jacquelyn,

I'm familiar with this phone support group - The Electrically Sensitive Group.  I've participated a few times and found it helpful.  I just heard that the moderator is stepping down and I hope that the group is still continuing with a new moderator.  The next scheduled meeting is this coming Monday, so you could check in then to see what the group's status is....

(The following info about the group is from an email posted on EMF Refugee Yahoo group in December.)

"This groups meets the second Monday of every month at 7:00pm eastern(US)time which is 4:00pm Pacific time,5:00pm mountain time and 6:00pmCentral Time.  

We talk about living with electrical sensitivity - symptoms, limitations, workarounds, ideas, what's still possible in a microwave encroaching world, etc.
If you're interested,the call in number is: (712)432-1402 and the access code is:780308# It's the Chemical Injury Information Network's conference line.
Speaker phone people are welcome.

Also it's free!!!"

Best regards.
Debbi


--- In [hidden email], "j_nesdale" <j_nesdale@...> wrote:
>
> Hello everyone I am pretty new on here. I currently work as a companion to a woman who sufferes severely from ES..she cannot be near any light at all (not even a candle or a lanter) and is very sensitive to smells as well. She had me come on the computer (becasue she cannot) and see if there are any support groups in the CT area? Is anyone on here homebound as well? any peer support groups anyone knows of? any help or advice would be much appreciated!!!
>

Hi Jacqueline,
 
I was (a few years ago) in touch with a local MCS group leader who was also looking to include people with ES in her group, tho at the time they had nobody in the group who was ES.  So I would say you could probably find a local CT group for multiple chemical sensitivities.  This also, in the CT area, might go under the name "TILT" ("toxin induced loss of tolerance") or the name "EI" ("environmental intolerance").  I do also have MCS/EI/TILT, so that is how I ended up talking with the group's leader.  It is not that unusual for a person with ES to also have MCS.  Usually MCS develops first and then, after one too many exposures to a toxin of any type, the person becomes also ES.  (For me it was the other way around, sort of, since I had a type of ES from early childhood, and became increasingly environmentally sensitive as time went on.)

Hope this helps,
Diane

--- On Tue, 3/8/11, Jacquelyn Nesdale <[hidden email]> wrote:


From: Jacquelyn Nesdale <[hidden email]>
Subject: Re: [eSens] HELP....with ES and EMF/....any support groups out there?
To: [hidden email]
Date: Tuesday, March 8, 2011, 4:11 PM


 



thank so much! Yes I do know there is very little in CT-but do you know of any support groups maybe in the U.S or outside of CT but not overseas perhaps?

--- On Tue, 3/8/11, Marc Martin <[hidden email]> wrote:

From: Marc Martin <[hidden email]>
Subject: Re: [eSens] HELP....with ES and EMF/....any support groups out there?
To: [hidden email]
Date: Tuesday, March 8, 2011, 4:05 PM

 

Welcome to the group!

Being sensitive to light can sometimes be a simple vitamin deficiency.
One of the symptoms of a Vitamin B2 (Riboflavin) deficiency is an
abnormal sensitivity to light. You could check on the foods known
to be high in this vitamin, and see if she is eating any of these.

I think there are also prescription drugs and also nutritional
supplements that can cause sensitivity to light.

I don't know of any ES support groups in Connecticut, although maybe
there are others here who know about such things. Generally it seems
like there are NOT local support groups for ES, although perhaps there
are for more well-known similar problems, like chemical sensitivity.

If you have any local practitioners of alternative medicine
(e.g. naturopathic doctors, chiropracters who also do nutrition, etc.)
in your area, they might know of support groups, or also help solve
the cause of these problems.

Marc

On Tue, 08 Mar 2011 20:24:47 -0000, "j_nesdale" <[hidden email]> said:
> Hello everyone I am pretty new on here. I currently work as a companion
> to a woman who sufferes severely from ES..she cannot be near any light at
> all (not even a candle or a lanter) and is very sensitive to smells as
> well. She had me come on the computer (becasue she cannot) and see if
> there are any support groups in the CT area? Is anyone on here homebound
> as well? any peer support groups anyone knows of? any help or advice
> would be much appreciated!!!
>

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[Non-text portions of this message have been removed]