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A long road and getting longer

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Old 08-30-2004, 02:16 PM   #1
Join Date: Jul 2002
Posts: 3
Medavis HB User
A long road and getting longer

I have followed these postings for years and am now ready to post. I was just recently deemed 40% disabled for GWI. I have been getting progressively worse over the past 4-5 years and as it goes downhill the whole ball of wax picks up speed and I am scared. My daughter of 17 is now showing all of the symptoms I have and that is what scares me the most. I am hoping to get her some relief before she goes off to college. I hate for her to have to deal with a severe stomach problem and school at the same time. We both have IBS and cannot eat dairy, wheat, onions, peppers, etc... We also have fibromyalgia, Multiple Chemical Sensitivites and so on... I am working with a great VA doc that is willing to do the tests I need to beat this thing. I have read a lot of DR. Nicolson's research and was tested for a Mycoplasma infection. It came back positive, as have a lot of other soldiers. Hopefully I can be treated with antibiotics and at least slow down the progression of this illness. I feel like I am going to die a lot of days, yet I go on for my family. I have had no cancer show up yet but I am waiting for that next. I have so much difficulties with memory and concentration, my family just laughs it off now. We'll see how this progresses and I hope that every one of you can get the answers and help you need. I have been searching for 13 years and finally this year am on the right road.
Good luck in your quest for the truth

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Old 09-02-2004, 06:19 AM   #2
Dear Maggie
Join Date: Jan 2004
Location: Valdez, Alaska
Posts: 343
Dear Maggie HB User
Thank you for sharing

There is an exposure to 2-butoxyethanol that troops both deployed and non deployed have. If you were harmed by this chemical (which does cause all of the 'gulf war syndrome' symptoms all by itself), you will have still at least a trace of blood in your urine.

The autoimmune hemolytic anemia doesn't show up in the regular blood work, which is very hard to understand the doctors don't know what to do with 'the blood in urine' information. One so exposed had very normal readings on the hematology info 15 years after his exposure; however, he wasn't even making enough new red blood cells. Since there was rapid weight loss in his case, it could have been a liver problem starting up & some nutrition lacking; however, it most likely was that the bone marrow was having difficulty making the normal number of new red blood cells at all ... and ALL of the red blood cells were immature ... none were mature, thus the fatigue.

So glad that your doctor wants to help. Many are not interested. Share this info with your doctor... on 'retic ratio'
What is the retic ratio test? How is the information derived from it useful for someone with CFIDS (the correct terminology)? In other words, what protocol, if any, is administered with this information? Thanks! 'Peregrine'

Reply, "I'm not a medical person, however, I have studied this chemical ... 2-butoxyethanol also known as ethylene glycol monobutyl ether and talked to many, many who were exposed to it. These workers, and those who stood nearby, were only exposed to this chemical during the Exxon Valdez oil spill cleanup of 1989.It is interesting to note that the Gulf War Vets of 1990-1991 were exposed to it PLUS diethylene glycol monobutyl ether. So, at the present it is a theory I have; but I believe it is provable, starting with the Reticulocyte Count (percentage of juvenile red blood cells to the whole of red blood cells)In studying this chemical you learn that it affects all these body system starting with premature destruction of red blood cells. This would have to underlie all other symptoms that pile on top of it. That's why I feel harm from this chemical is provable.Says Patricia Wilcox, M.S. "There can be significant hemolysis which is invisible if all you do is a standard blood count, but shows up nicely as an elevated reticulocyte count, about 2.5 days after exposure ... This is called compensated hemolytic anemia.

"According to Robbins' Pathologic Basis of Disease, 5th Edition (1994), Chapter 13 (Diseases of Red Cells and Bleeding Disorders), page 584:"With an increased demand for blood cells in the adult, the fatty marrow may become transformed to red, active marrow. Moreover, this is accompanied by increased productive activity throughout the marrow. These adaptive changes are capable of increasing red cell production (erythropoiesis) seven- to eight-fold. Thus ... such loss of red cells as may occur in hemolytic disorders produces anemia only when the marrow compensatory mechanisms are outstripped."So a reticulocyte count might be a good screening tool for red blood cell damage/destruction due to exposure to certain types of solvents, e.g. glycol ethers, in patients who are not so badly damaged that they can no longer replace red cells as fast as they are losing them (i.e., they still have normal red blood cell count, hemoglobin, and hematocrit).

Mark Cullen et al. looked for changes in peripheral blood and bone marrow in solvent-exposed printers and spray painters, and found substantial bone marrow abnormalities that were undetectable in peripheral blood counts -- they focused on glycol ethers as a likely suspect ..Cullen et al. found a one-to-one correspondence between blood/bone marrow abnormalities and red blood cell pyruvate kinase (PK) deficiency in solvent-exposed workers.Does this help? PS - I share this info on web pages ... so if you were interested it is not hard to find more information. Just search for 2-butoxyethanol for starters.

It is also interesting to note that the CDC definition of CFS looks just like the list of symptoms the Gulf War Vets have ... and that was written in 1988. It is also interesting to note that DOW chemical has been pushing such butyl ether chemicals on the Dept of Defense since before this time and in 1988 in particular - pushing 2-butoxyethanol in very strong concentrations. No one, not even the military, should even handle such chemicals.
If it turns out that you do have too many immature red blood cells, other tests can be off such as the WBC (must be taken manually, not by computer) and the liver looks OK, when it may not be, etc, etc.

Your daughter was just a little girl when you came back from the military service? This chemical is easily transmitted from the breath of one person to the eyes of another ... There are multiple examples of second hand exposure. Have her checked for any traces of blood in her urine, and whether or not the ratio is right for mature to immature red blood cells. These would be the key markers of 2-butoxyethanol poisoning.

Since it is also a pesticide it disrupts the glandular system. Digestion is a function partly of the pancreas ... at least it supplies digestive juices. This gland seems to be particularly at risk: many have very high blood sugar (or very low) & it is an expression of endocrine disruption, not diabetes per se.

Any time you have too much exposure to one chemical, it can make other allergies start up, etc. Is there a way you can manage your health issues with a minimum of medication? They, too, add to your chemical load.

Part of the confusion of the 2-butoxyethanol chemical is that it leaves the body in 24-48 hours, it doesn't bioaccumulate, so chemical companies say it isn't harmful and they should be able to emit more in the air. EPA, please, "NO and triple NO" This is a tornado chemical. It may leave quickly, but the devastation left behind no one should have to endure.

Please share when you noticed the fatigue start.... and what you were doing then. Many people can go to the exact day of too much exposure to this chemical. Please share with us what your doctor finds in these 2 areas. I do suspect this chemical, but need to know if my theory is correct & worth checking more people for.

Last edited by Dear Maggie; 09-02-2004 at 06:38 AM.

Old 09-02-2004, 03:35 PM   #3
Junior Member
Join Date: Jun 2004
Location: Missouri
Posts: 22
DeadManWalkin HB User
Re: A long road and getting longer

Well Medavis, I sure hope you do get some help. My V.A. doctor told me "off the record" that Gulf War 1 Vets. are kinda screwed and his hands are tied as far as getting me the right pain meds, diagnosis and treatment. He and I both know the system and what we're up against with this whole GWI. The Govt. won't admit to anything so........ I had to apply for state Medi-Caid to get any real relief for my pain, Oxycotin Ir and 50 microgram Duragesic transdermal patches. The VA was throwing Vicodin at me but wouldn't go any farther as far as Narcotics were concerned. Feel free as you get better at using this board to go through all of OUR "adventures" with the VA on here. Maybe you have a VA physician that isn't concerned about his standing with the Veterans Admin. and will get you some real help!! Matt S.

Old 09-03-2004, 05:08 PM   #4
Senior Member
Join Date: Jun 2004
Posts: 109
ShatteredLife2 HB User
Re: A long road and getting longer

I'm sick too and spent 7 days in an army hospital where I came very close to death it wasn't funny at all... I followed my orders to take the vaccines! I would have died for the U.S. Army if need be! The antibiotics didn't do anything for any of us soldiers (11B) so they had to up the strength because I wasn't improving. I personally believe it was the " Last Line of Defense Pill ", which is the strongest antibiotic known to man. I was up out of bed the next day up and walking around but it was too late because my body was already trashed. This is permenant damage done to us! There is no getting better as far as I can see. We're talking nervous system damage! Cognitive damgage, etc. Irreversible damage done to over half the military. My advice to anyone that is suffering like I am is to go to [url][/url] it may help you learn more about your gulf war syndrome... I say syndrome because that truly explains what we have got more accurately!

Last edited by ShatteredLife2; 09-03-2004 at 05:12 PM.

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