I am new to this message board. We have a 7 year old diagnosed with a leukodystrophy of unknown origin. Would love to hear from others in our situation. All the tests have been done and are negative for all of the known leukodytrophies. - lovejacob98  11-17-05

 

I strongly suspect that an exposure to 2-butoxyethanol which would cause Chronic Fatigue Immune Dysfunction Syndrome may be in the family line.  It is a very common chemical exposure from WWII days to the present.  www.valdezlink.com/hemoglobinuria.htm
 
It is much more probably the cause of harm to the Vietnam vet ... than dioxin, etc, etc
 
I wrote to the Myelin foundation regarding ALD and shared that this is the kind of thing that this chemical would do. It causes harm to the X chromosome sometimes, and that is part of what you are looking for.  Actually it could cause the whole group of them.  The exact variation of type wouldn't matter.  I also suspect it causes many cancers that have tumors in them ... I believe if you look at all the soft tissue sarcomas, for instance, as a group ... they aren't all that rare
 
They are finding great success with many birth defects and autoimmune issues (which I suspect that this chemical causes) by using good nutrition and glyconutrients.  The nutritional discoveries of Roger J. Williams, PhD is what they are based on.  I've also found another book by Jordan S. Rubin, N.M.D., PhD  (nutritionist) who has some good helps with glyconutrients being a part of it.  Patient, Heal Thyself
 

11-22

more thoughts

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11-26-05

You say, "We have a 7 year old diagnosed with a leukodystrophy of unknown origin. Would love to hear from others in our situation. All the tests have been done and are negative for all known leukodystrophies ... "
 
So that means you have no damage to X chromosome?
 
I have heard that that is a requirement for ALD ... others, too?
 
I found a site that had a list of what seemed like 50 varieties of leukodystrophies.  AND one was found ONLY in those who had been in Auschwitz during WWII.  I thought, this is very interesting.  It couldn't be just what they 'deloused' the prisoners with ... because that would be the same for all the camps.

 
Then today on the History Channel they were having a documentary on Krupp family who produced the munitions during the war.  After being bombed, they moved the detonation munitions manufacturing to Auschwitz in 1942.  Under Speer, head of munitions eventually, they later required prisoners, even women to work there, part of their forced labor force.
 
This would fit what I suspect causes the soft tissue sarcomas and the  leukosdystorphies, as a group:  what are in bombs & the exposures to those in manufacturing and war zones of WWII to the present?

12-2-05

 
So, contrary to believed medical opinion, it appears possible to get enough exposure to a chemical (which I suspect is 2-butoxyethanol) to come down with one of the leukodystropies.
 
When I find the article I was reviewing, I will let you know which leukodystrophy it was that the Auschwitz Jews of WWII came down with.
 
Did your child have a flu that was very severe, but it wasn't the flu?  What was he doing then?  What was going on around him?  Who arrived at your home at that time, that wasn't there otherwise?  What is the baby sitters health like, and what exposures to this chemical could be in that home?
 
Do you recall a time when you had flu-like symptoms or do any of you have the package of Chronic Fatigue Syndrome symptoms?  For direct exposures check some of these things  Only medical clues to the autoimmune hemolytic anemia that should be there would be blood in urine and red blood cells that are small-sized
 
You need to add up all the possible exposures to this chemical that either of you could have had before your child's birth ... even your parents... and what exposures the child could have directly.  It could be a combination of several ... or only one.
 

Avoid 2-BE for Health - MM   -  more info on 2-butoxyethanol

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