Maggies Thread

[Dear Maggie]

Could there be a glyconutrient trial for ALS? nasopharyngeal cancer?

For doctors interested in glyconutrient trials:

As you pick things for the glyconutrient trials ... I suspect you are selecting autoimmune types of things that could be from the harm of 2-butoxyethanol - predominately. That is why I have taken such an interest in each of your trials & would like to continue to be updated on the progress.

Could there be a trial for ALS?

I think that this would be the prima-dona health ailment for someone woth a LOT of exposure to 2-butoxyethanol ... and this group would benefit also from glyconutrients - to help the immune system work properly & stop attacking them.

There is also a lady whose husband was a fuel handler in the military for 12 years ... she has come down with nasopahryngeal cancer NPC ... one of the ailments for the Vietnam vets ... & I suspect from the harm of 2-butoxyethanol. She wants to be part of a glyconutrient trial for her group. How many people do there have to be for a trial? Can you have a few people added in different categories ... along with the trials that are being done now?

Following is the list of harm that is known & suspected for the Vietnam vets ... I would suspect it for the gulf war vets, too, if more info were available: ... or for someone who lived in a remodeling house project & continuously got the paint and varnish chemicals in their eyes: (for housewives who clean a lot, etc)

[Dear Maggie]

8-4-05
Hello margaret,

I am somewhat back online. We have moved since our last talk. I have the website up. www.gulf-war-crisis.com and will be working alot on it soon. I leave today to go to VA for surgery. They found a mass up in my left sinus and they are operating today. Not sure when I will be released, but I will email you shortly.

Sorry for the lost time. I had to bury my very close friend that I served with in the gulf. Steve Sack 35 years old back in November. Our story is long, but I need to tell someone.

my email:
chadpagel@gmail.com

Thank you for always being there. How are things on your end?

Best wishes,
Chad Pagel

My reply:
So glad to hear from you!

Please ask the doctors if you can take these glyconutrients.
dr. REg will do a trial with them for gulf war vets....

How many gulf war vets would be interested?

www.valdezlink.com/pages/couldtherebe.htm

I'll contribute to your site

Margaret

PS
Sorry to hear about need for an operation for a sinus, tumor, Chad - will be praying for you.

Seems that an autoimmune immune system is the major culprit and that glyconutrients offer the best hope for help. Several trials in the works

Chad, Hawk - we can get a trial of glyconutrients ... for gulf war vets ... You need to be taking these NOW. Please ask your doctors to check this out

Well, I was thinking that lef.org would be a good group to fund research, as they seem to be noticing the autoimmune aspect of Type 2 diabetes and ALS ... So In checking around, I posted a couple of comments on their discussion forum as 'Mother Margaret' ... a couple of comments on fatty tumors and on depression/anger.

[Dear Maggie]

... all that said ....

They say that doctors who examined many of the gulf war vets came down with 'the syndrome' too. That is very possible. A doctor I 'met on Patriot Files' sounds like he has the harm of this chemical, but I don't suspect it entered his mind that it could have been from one or more of his patients.

Let me give you an example of 2nd hand solvent exposure I suspect in our town last week: Two ladies of our BnB Assoc came by our house for a 'peer BnB review' It was for a singular item, so they weren't there long, but in the process, one lady was talking about how she never slept. It started up recently. And she talked about being so sick in June with a 'flu' that she just couldn't get rid of.

They had about a 30 minute round ride in a car to the next place - which was a full review and would take longer. Well, right away, the other lady became so ill that she was in the hospital with the 'flu' for several days. (I didn't hear about it until the end of the week.) She said she was shaking and so TIRED. I asked her a couple of questions. Nothing stood out. She said that their neighbor had the same thing and 2 weeks prior the Doctor said he had seen it. Must be a virus - they just had the flu. I suspect that the companion lady who never sleeps, in 4 months will have 'THE FATIGUE' that never leaves & that no rest helps. (Red blood cells used to live 4 months - but no more - if it is this autoimmune hemolytic anemia)

Margaret e-mail margaret.realhelp@gmail.com

There is a pattern with the harm of EGBE
It is NEVER just one thing. www.valdezlink.com/scenario.htm

The pattern is not identical - but as to the core pattern, very similar
Some comments on health changes
http://www.valdezlink.com/evos/health_changes.htm

Robin had her spleen & pancreas removed http://www.valdezlink.com/evos/other...h_concerns.htm

The reason the Exxon Valdez oil spill workers are vital to medical science is because the chemical of harm for them was primarily 2-butoxyethanol. Many have been hurt.
http://www.valdezlink.com/study_needed.htm#groups
Some comment today: http://www.valdezlink.com/evos/summary.htm

My firend in IL who died 6-24-05 had the 'pattern' and was getting Procrit shots weekly for her diagnosed low red blood cell anemia. She was only a hardworking housewiife. I wonder whether she could have lived longer with a transfusion of whole blood at the right temperature, given slowly? Until she could have been given glyconutrients, too

http://www.valdezlink.com/2-bmsds03.htm
This is the BEST MSDS-research I have found. A doctor can go to the original web site and request other info - not available to me
I am interested to know whether they mean something like breast cancer when "Other female effects" is mentioned


Remember, worst exposure is vapors in one's eyes (also at cuticle area)

Maybe Dr Rea and Dr Patrick Garrett & Dr. Reg could work on a trial for the EVOS workers & many in Valdez with 'diabetes' In the meantime you will identify what a group of PEOPLE looks like who has been harmed by 2-butoxyethanol

I'm looking forward to the day when Congress bans these n-butyl ethers ... and no more people will be harmed by their exposure

PS Dr. Reg is willing to supply glyconutrients for free to gulf war vets &/or other groups ... ALS, such as his company is now doing for those starting the scleroderma trial Still time to be added in!

When I first heard about glyconutrients it sounded too good to be true, and I dismissed it. I have heard more about it now, from various respected sources, and I believe it is a natural help for arighting an autoimmune immune system, and REAL HELP for many, many people.

[Dear Maggie]

You are right.

Exxon was wanting to look like they were doing OK, a PR event ... with little regard for human life. Of all the things they've checked in on ... with the environment ... those in charge of 'checking it out' have avoided or neglected to find out what health ailments existed for the workers. Over half of the 11,000 reported 'flu-like symptoms' which the doctors (as usual, just said was a virus, or like living in tight quarters).

Right now there is 100 million dollars on the table for workers to come forward. But they are intimidated. You know, Exxon lawyers, I've been told, made a big deal about the chemical, 2-butoxyethanol, being in so many everyday products, "How do you know it was ours that caused your health concerns?"

Believe me they would know. Worst of all, EPA did ax the Inipol EAP 22 at 12% strength 2-butoxyethanol, but gave Exxon a worse product to sell & promote ... and they have: Corexit. It is 38% 2-butoxyethanol and it has been sold to the Dept of Defense, to Australia, to Karachi. I suspect some of it was in the 1990-1991 gulf war for soldiers to move around and to smell the fumes when the walked into the arms room.

AND there had been pretty poor warnings on products, now there will be none at all: EPA has 'delisted' 2-butoxyethanol and diethylene glycol monobutyl ether. No limits for plastics or dry cleaning businesses on how much they can put into the air. Sad, sad story. I thought things were bad. Since 2003 they are worse.

[Dear Maggie]

"Do I have CFS?"
I was wondering if those of you out there could maybe confirm for me if I have CFS, since im sure many of you have been dealing with it for a while. Around a month ago I was feeling healthy as can be, on a trip in california with my buddies. When one day I suddenly felt like I had the flu. It came up out of nowhere and completely took me down. Since then I have gotten every blood test you can name, ive gotten an MRI on my head. And ive done skin tests, you name it. And nothing has helped, this is what has led me to believe I have CFS. My symptoms include:
-Really bad brain fog, confusion.
-Extreme fatigue, I am constantly tired and never up for anything.
-I feel hot, mostly at night...but to the touch of someone else they say I feel cold. Which is confusing.
-When I wake up from sleeping over 10 hours Im still dead, haven't felt refreshed in over a month.
-Not as social as I used to be, depressed...and really frustrated.

This has not been letting up at all, the doctors have no answers for me...I have an appointment setup to see a Neurologist. Should I even be going? Thats the next doctor my main doctor suggested I go see...mainly because of my bad brain fog. What Im asking is do these symptoms relate to what you guys started off with? The fatigue is relentless and I basically feel useless 24/7. Im 18 years old, decent physical condition. Dont see how this could have came up on me. Also when it hit, I started off with a swollen gland in my throat...and ive been reading on here about that sometimes being part of the problem.

Thanks for any help you guys can give me. Since im heading off to college very soon, I dont want this to be a burden my whole time there.

Thanks again for any information you guys can help me out with.
Sincerely,
Trevor

getting my family to believe I have CFS isn't going really as planned. I dont think they understand exactly what im feeling. Plus its hard to explain what the Brain fog feels like, and the constant feeling of not wanting to do anything. Anyway im heading to Hi Health today to pick up some of the vitamins, ill buy some herbs to that stormsyke listed, and give those a try. Also when when I came down with it, I felt like I had the flu at first...this was a month ago. I came down with strong nauseau the first day, then the brain fog and fatigue came quickly after. About a week after this happened the symptoms were still strong

Trevor, you say, "one day I suddenly felt like I had the flu."

What was different on this day?

This looks like exposure to 2-butoxyethanol

I suspect it is the cause of CFS or actually, more correctly, CFIDS

Even if someone new entered onto the scene ... with you and your buddies that day ... because the 2nd hand solvent exposure (getting in your eyes the vapors that someone can expel in their breath - is an exposure too!) Did anyone else get 'the flu?' If not, what did you do differently than they?

Definitions on CFS etc www.valdezlink.com/cfid_share.htm

and more about what I'm talking about. I added links to this basic page on what this chemical can do
www.valdezlink.com/acute.htm

... hoping doctors will check more in the blood in immune system. This chemical damages the Central Nervous System, so in my opinion you can skip the neurologist -

But I would find a doctor to do some of these other checks to find the fatigue. I suspect it is compensating autoimmune hemolytic anemia. That's what this chemical causes. www.valdezlink.com/why_fatigue.htm

PS

I would be concerned for the person you are sharing your dorm room with. I learned about this chemical because someone in my family was harmed by it. Right after the 'bioremediation experiment' of the Exxon Valdez oil spill cleanup, 1989 there were 1,000 young men that returned to college, or like you, went to college for the first time.

Now that I've learned about this chemical & how someone can be affected 2nd hand from someone else, I would surely watch carefully how your dorm room person is doing. Maybe even ask for a private room for health reasons.

So, sad that EPA has 'delisted' EGBE. The chemical companies successfully lobbied them saying that 2-butoxyethanol does not bioaccumulate & NOW there is not need to put the pesticide EPA registration number on Lysol Tub 'n tile or disclose in anything. No limits on how much of this chemical can be released from manufacturing plants such as in dry cleaning and plastics industries, etc etc

Thanks for giving me this extra info Mother ill look into it for sure. When I came down with the flu feeling it started as real bad nausea in the afternoon, I had dranken alot of beers the night before so I thought maybe just a bad hangover. But by the 3rd day it was still strong, so I knew it wasnt a hangover. I cant recall anything different I did that day, and no one else got sick. Im still awaiting a lyme diesase test. And im on my second day in the dorm and I feel incredibly bad. I had to expel alot of walking energy today around campus, and this whole night ive felt like I have a severe flu. Also last night I couldnt sleep to save my life. I was up from 6 am to 10am just looking at the clock rolling side to side. Im going home tommorow to hopefully make a doctors appointment to get my lyme test and rule it out. Im gonna have to get out of the dorm there is no way I can pull this off. Constant partying and staying up...I just can't do it with my condition. And its hard because of all the peer pressure to stay here with my buddies so I dont know what im gonna say... But ill look more into your information Margaret and tell that to my doctor. I want to thank you guys for all the help youve been giving me. Its makin it easier to figure this out. The frustration now, is immense. Ive been this way almost two months now and you do get suicidal tendencies. Im holding in there though and plan to beat this anyway I can and still go to school. Ill keep you guys updated. Take care, Trevor

I think that you may have been sitting next to someone that was strongly exposed. In a bar situation, you may have gotten exposed to the chemical I'm concerned about .... second hand

Did your eyes burn and hurt?

Please ask your doctor to check the retic count. It might be elevated & a clue early on, that there is autoimmune hemolytic anemia - the fatigue (biomarker of 2-butoxyethanol poisoning)

http://www.valdezlink.com/check_blood.htm#retic

Ask if the red blood cells look 'ragged and beat up'

Personally, I wouldn't be concerned with Lyme disease test. Lots of other things like that and thyroid go on to add the signs of 2-butoxyethanol poisoning. The signs are there, in my opinion, because they are a 2ndary effect of this chemical, too ... so of course, the other signs are noticed.

Ive made the decision to move out of the dorm. With my condition there is no way I can attempt to take it easy and rest. So the way I see it im just killing myself trying to live there. I will move back home and take it easy. Still attending school, this way Ill be able to get more sleep and also eat healthier. Trevor

An example of 2nd hand solvent Exposure:

Trevor .... THINK .... who were you sitting next to a lot that night? Or did you spend time with someone different than the group? What kind of work did they do?

I can give you an example of 2nd hand solvent exposure:
http://www.valdezlink.com/gwv/2nd-hand.htm

http://www.valdezlink.com/hb/allergic_eyes.htm
Do you remember your eyes burning and hurting?

Also, please air out the house so your mom and dad don't get a chemical exposure 2nd hand also. I was visiting with a lady who commented to me that her CFS started in 1989. I exclaimed, "Peggy, did your son who worked on the Exxon Valdez oil spill cleanup come to live with you after that job he did in 1989?" Her answer, "YES"

[Dear Maggie]

hello I just had lots of specialized blood work due to a 5 yr toxic mold exposure. The way my DR. explained it to me was that everyone has epstein barr in their body but if all is working well it stays in check. a regular count is 20. Mine was over 170 that means that my body is being overtaken by candia "yeast" I have lots of auto aummine things wrecking havoc in my body. I always feel tired and have everything you described and more. I also have post lyme disease syndrome. What was your number for epstein barr? shu37

If the immune system is autoimmune, maybe it is ignoring bacteria & that is why bacteria is in blood, urine?

The less medications the better
And avoid any exposure to 2-butoxyethanol
They hold out great hope for use of glycontrients to help immune system not be autoimmune.

Share this with your doctor:
www.valdezlink.com/acute.htm

This chemical causes headaches - Extreme Irritability - CNS Depression
Part of CFS - CFIDS - FM is central nervous system damage & serious irritability.
That makes being kind & not grouchy a hard thing to do?!

Iron low? You need iron to make red blood cells:
http://www.valdezlink.com/pages/iron.htm
http://www.valdezlink.com/rbc_size_shape.htm

Tired of being tired?
http://www.valdezlink.com/pages/annijones.htm#tired

CAN YOU GET CFIDS - SECOND HAND?
This lady shared with me that she remembers THE DAY her CFS/FM started a day during a convention she was attending, 1991 http://www.valdezlink.com/pages/anot...dhand.htm#want

Still looking into the harm of EGBE 2-butoxyethanol ...

It appears to be a CFIDS, diabetes, autoimmune metabolic causing
chemical:

Note other examples of 2nd hand solvent exposure, etc

Scleroderma trial starting up- using glyconutrients

http://www.valdezlink.com/pages/look...rticipants.htm

FUN WEB PAGES:
http://www.valdezlink.com/fun/7wonders.htm turn on music

http://www.valdezlink.com/fun/freckles.htm

http://www.valdezlink.com/fun/careshare.htm

e-mail: margaret.realhelp@gmail.com

[Dear Maggie]

Never thought of it as being something like that ... but here are 2 definitions of gout: and I suspect it for being one of the things that are autoimmune metabolic dysfunction things, such as could be caused by 2-butoxyethanol exposure/s

Gout is caused by buildup of uric acid in the body. When uric acid levels rise in the body, it crystallizes and causes sharp needlelike pain, particularly in the toes and feet. The immune system then attacks the crystals and causes pain and swelling. Could this sometimes be part of an autoimmune metabolic problem?

"Gout is a type of arthritis that results from too much uric acid in the body. Rather than being flushed by the kidneys and through the urine, as it normally is, it forms crystals and deposits in the joints. These deposits give rise to inflammation of the joints, causing pain, swelling, redness and tenderness of the area."

... a discussion forum on this and other topics along the lines of arthritis