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bbear 06-18-2004 01:04 PM

Swelling in legs, (pain) anyone else???
Hello my hubby was in the gulf war! ......came back and has had swelling in his legs....He is very active! Not over weight...He is 41 yrs old...this has gotten worse over the yrs......He went to Doc to find out whats wrong! Of course nothing???? I have to disagree with the Docs....He feet and lower legs swell up really bad! He has been having pain and a really odd rash that comes and goes.....Does anyone else have or know someone who has heard of this??? Its worse in the left leg then the right.....Some times the pain is unreal for him..I feel so help less....he has unexplained min he is fine..the next burning up with fever.......I'm upset, confused and have gotten no answers...! Help! :confused:

Dear Maggie 06-19-2004 01:24 PM

Does he have other 'symptoms?'
... that have come to be known as the 'gulf war syndrome' symtpoms?

First off, the blood organ regulates body temperature. I suspect there is fatigue, too and that that is because the red blood cells have been affected, most likely by an immune system gone awry. Check the reticulocyt count (are there too many immature red blood cells? 'retic' ratio) It is only about a $50 add on blood test; then ask for size and shape of red blood cells; the differentials with CBC.

This I believe to be the first sign of harm from a chemical exposure to 2-butoxyethanol (may be in jet fuel, the solvent in gun cleaner, etc, maybe in some pesticides)

What did your husband do in the military serice during this time?

Swelling of organs is common place with this chemical exposure: spleen, gall bladder, testes, liver, so maybe other things, too

Endocrine disruption would be going on.

Even odd readings for blood pressure and blood sugar

What is his blood sugar reading, with diabetes (or this type of endocrine disruption) high blood sugar can cause feet/legs to bloat up and have pain when walking, too (neuropathy); there could be concerns with autoimmune pancreas (so be careful if you are prescribed medication, as it can affect the kidneys and liver ... and this chemical exposure harms them,too)

Did you know that the pancreas has enzymes or digestive juices besides just making insulin for blood sugars? (I didn't know that until Attorney General John Ashcroft had an attack and eventually had his gall bladder out. Other people are harmed by these same chemicals)

Thyroid can be off and lead to kidney stones.

But when there are too many immature red blood cells other tests can be off. Check under hemolytic anemia & look for info under 2-butoxyethanol

Does he ever have chills? ... rapid heart beat? and other signs of hemolytic anemia? One vet shared the following on a discussion forum, "several times in the last few weeks I have been shivering (its almost like I was so cold i was shivering from it but I am not cold) this has lasted anywhere from 10 minutes to an hour." There is a particular type of hemolytic anemia that can cause such.

Dear Maggie 06-21-2004 07:05 AM

PS - Maybe liver problem?
As to the rashes they are a sign that he is currently being exposed to some kind of chemical that is too much for him. Rashes are one indicator of such ... but there are others, such as cough, headache, sore throat, flu-like symptoms.

There are 3 things that regulate one's body temperature that I've heard of: besides the blood, the sweat glands (per instructions of the nervous system) and the thyroid? (not sure on the thyroid except that someone commented a person could have subnormal temp with that)

Now I wanted to share with you another cause of swelling in the legs. Sue in our town is diagnosed with a rare liver cancer. She is on medicaid so gets very good testing, etc. She has undergone chemo and it didn't do any good as her liver is swollen the size of a watermellon and the doctor is not going to do any more chemo. (There are a lot of tumors in the liver.) Right now her legs are badly swollen and she was told that it was from her liver failing.

Now I met Sue about a year ago. She is about 50 and has the 'horse whisperer' gift with children ... can gently lead them to into thinking that doing the right thing is what they want to do. Anyway, she seemed to want to get to know me better, and now I believe there is information I've learned that will be helpful to her.

I have seen her turn white as a sheet as she has one of her debilitating headaches. She was diagnosed also with thyroid problem which she shared brought a different type of fatigue. Yesterday, she shared, that "yes, she knows first hand that a transfusion of whole blood will help you feel much, much better ... as when she was half way through her first chemo therapy treatment she reacted badly and almost died right then; but the transfusion of whole blood made a remarkable difference."

She had shared with me that her mother died of kidney cancer and that when she (Sue) was only 5 years old her parents took her to the emergency room more than once for severe, horrible headaches. (So was she affected by this chemical before she was born? Or was her mother affected & breathed out the solvent into her child's eyes?)

Now Sue has started having kidney stones (which could be the non-text book cause of a metabolic imbalance related to the thyroid)

I said, Sue, you have a lot of signs that are more than just liver cancer, do you know whether you have too many immature red blood cells, and that underlying all of this you might also have hemolytic anemia caused by this 2-butoxyethanol that does all of these things?

She asked a fill-in doctor for her cancer doctor, he found out that, yes, she does have too many immature red blood cells.


Why do doctors sometimes not find liver cancer in cases where there are too many immature red blood cells? Many times the liver cancer is not found by the normal tests that are given, because when there are too many immature red blood cells they offset the liver tests in which certain counts drop ... because for too many immature red blood cells the liver counts rise.

You see, they offset each other! That is why the fatigue isn't found, too.
Although the CBC and hemoglobin and hematocrit seem OK, it is only because the bone marrow is compensating for loss of red blood cells ... by making more red blood cells. But these don't last the 4 months they should; they are low functioning. They do not help you store and utilize your iron appropriately. They do not help store and carry the oxygen appropriately.

This is the fatigue that has been eluding the medical profession for many, many years, or why would there be such definititions for CFS, CFIDS, ME and others that in essense say you are fatigued alright, but the doctors do not know why

A yahoo search for hemolytic anemia will share a lot of types of it; and the tests that are given; and the tests that won't be accurate when there are too many immature red blood cells. (I theorize that this is some kind of auto-immune situation in which a person's own immune system is destroying the red blood cells. Later the immune system can affect the other organs, too)

We had our local chiropractor die this January. He saw a lot of workers in 1989 who could have exposed him to 2-butoxyethanol second-handedly through their breath getting in his eyes. First he had melanoma eye cancer in about 1992. Then he came down with liver cancer, but it eluded the normal tests that would show such. Not until they inserted a camera at his naval area and looked around did they find that he was full of cancer in his liver and his stomach. There was nothing they could do. His wife shared how he became so grouchy, 'unlike himself' One doctor said his cancer was from benzene. I doubt that because although benzene causes leukemia, it doesn't cause liver cancer, per info on the chemical. But the blood would tell the truth. If he had aplastic anemia, then consider it! If on the other hand, he had too many immature red blood cells (or if they didn't take the 'retic' ratio ... a decline only in the red blood cells) consider 2-butoxyethanol poisoning.

jayblaze7OO 06-21-2004 12:19 PM

Re: Swelling in legs, (pain) anyone else???

You may want to have your husbands ANA level checked. Skin rashes can be a sign of multiple chemical sensitivity or it can also be a sign of auto-immune disease (aka. lupus). the ANA level checks the amount of toxins your body is releasing. AIDS is an auto-immune disease. A high level of ANA in the blood causes the body to be unable to fight off infection very well. You would want to see a rheumatologist at your local VA to get this testing. Your primary care provider may also do it if you request.

auto-immune disease would explain the fevers, rashes, and pain in joints and muscles. Lupus is in the CFR as presumptive for SC. The least you could do is to rule it out, then we can go from there.

DeadManWalkin 06-22-2004 10:26 AM

Sorry to here of your husbands health bbear. I've had the V.A. do the "Million Dollar" blood work-up on me and a battery of other tests too. They haven't found anything wrong yet, big suprise! Hopefully you have Medical Insurance as well as getting V.A. care too. I have re-thought the health care the VA provides in the last few days, not that its any good, just jump through their hoops so if they, which I doubt, find anything wrong it's a bonus. But, if your primary physician outside the VA finds the problem with the help of a specialist, this will give you some fire-power against the VA down the road with disability compensation if need-be. I fortunately now have a outside the VA doctor who was our family doctor when I was a child. He couldn't belive what had happened to me and my condition from what he remembered from my childhood, I was a pretty good athlete. He went on to say the VA was a terrible system and Veterans deserve the best health care availible, which we don't get. If you have any other questions concerning Gulf War veterans health, feel free to ask. I've been researching alot over the last year, probably have a couple hundred sites bookmarked for reference if I need to find something for me or someone else. Matt S.

DeadManWalkin 06-23-2004 09:12 AM

Maggie, I had those test you mentioned in your post above and they were normal too. My girlfriend is a phlebotomist and she handled those test herself. Nothing there, worth a try though................................Matt S.

opossumprincess 09-10-2004 05:06 PM

My husband also has had edema in his legs & feet since last Aug. He was in the Gulf War and has been diagnosed with CVID (Common Variable Immune Deficiency). His dr's have tried to figure out what the swelling is from and have ruled out almost everything. It all points back to the mysterious CVID. Does your husband also have gastro-intestinal problems? My husband's dr's think that his edema may be the result of his GI/digestive problems...not being able to metabolize food properly resulting in not enough protein in his blood vessels which then causes an imbalance in fluids with more fluids ending up in the tissues. I would love to compare notes with you about all this. I just joined this board and I also posted a message on the Immune Disorders board under the CVID thread. Hope to hear more about this from you.
Erica in MD

Dear Maggie 09-10-2004 07:49 PM

Does he have this?
[QUOTE=DeadManWalkin]Maggie, I had those test you mentioned in your post above and they were normal too. My girlfriend is a phlebotomist and she handled those test herself. Nothing there, worth a try though................................Matt S.[/QUOTE]After checking for blood in urine (look back at old urinalysis & see if there is at least a trace of blood in urine) then since we are so many years out, what is the peripheral blood smear show?? Evaluate the 'retic' ratio over time ... and check this post

I've been studying a chemical that causes a lot of the 'gulf war syndrome' symptoms all by itself. (And troops were exposed to it.) One person was exposed to ethylene glycol monobutyl ether in our town by getting the breath of others who were exposed ... in his eyes. He ended up with a hard to diagnose liver cancer. They had to insert a camera at his naval and look around. (He was a chiropractor, but dentists & others are at risk for second hand exposure, too, even those who live in the same household)

If I am right about 2-butoxyethanol being the primary cause of harm to those like your husband, they will all have this in common:

1-Traces of blood in urine
2-Red blood cells are mostly immature (this causes other tests like WBC and liver to not read right ... maybe even the basic blood work, because there is no indication in the blood workup that there is anything wrong)

What is going on, best I can tell, is autoimmune hemolytic anemia.

For digestive problems look at the pancreas. Not only insulin, but also digestive juices are part of what the pancreas provides. Many times blood sugar and blood pressure are abnormal, either high or low due to endocrine disruption of this PESTICIDE, SOLVENT, POISON.

Is there a test to determine the age of the red blood cells? They are supposed to live to about 120 days, aren't they? They should be abnormal in their size and shape and the membranes may show fagility.

So, now I realize that it's not just the 'retic' ratio that matters like I thought last month. It will be elevated at first, and drop back into normal range, and then over time, people won't even be making enough red blood cells AND still the other blood info looks OK except the Red blood cell count will be barely borderline normal.

If you find any traces of blood in urine, and that the red blood cells are not that old or mostly immature, would you share with us?

babaloo 11-22-2004 09:39 AM

I have severe swelling --came on overnight. No dr's can find anything. My husband and I are trying to figure it out and have come up with edema, and protiens as well.--but it is my upper body and face. Have you found any answers--besides the diuretics? thank you so much.
