I stumbled onto the FATIGUE of CFIDS

[AndrewL]

@Mother-Margaret

I do think that there could be trace blood in urine, and the doctors dismiss it (not mention it) as it doesn’t match what they see in the blood work ups.

My wife’s urine has been tested, repeatedly, to the extent of having a catheder put in her bladder to directly sample the urine there. No blood. No hemoglobin. None of the indications you would get if bood cells were dying at an unusual rate. Hemolytic anemia can be ruled out in this case.

The retic rate doesn’t help that much either. This one woman who was in the medical field & interested in it said that it only spikes at 2.5 days after exposure. So it would be a good test for doctors to consider when they don’t know whether the FLU is the flu or this particular chemical poisoning. But after that it doesn’t help. Whatever it’s doing, it is doing in normal ranges. One man who had the pattern of harm, and the possible exposure in 1989 shared what the doctor found who did order a reticulocyte count. It was below the normal range … and still his RBCs were borderline normal, but just barely.

If the reticulocyte count is “It was below the normal range”, then he doesn’t have autoimmune hemolysis, which would cause an elevated reticulocyte count as the bone marrow pumps out cells to make up for the ones being destroyed. Maybe if the autoimmune disorder was affecting the bone marrow, but then you’d expect the total red blood cell count to be low as well.

Somehow I suspect that if the blood looks normal or nearly normal, the cause of the disease is not the blood. Just saying. There are a LOT of things which can cause flu-like symtoms other than the flu, and doctors do consider this.

Doesn’t your wife have FATIGUE, Andrew? That is a primary symptom of CFS & CFIDS.

Of course. That’s what got us to have the blood tests, urine tests, and other tests done. Since CFIDS is largely a proces-of-elimination diagnosis, you end up testing for a lot of other things first before declaring it CFIDS. Fatigue can be caused by a lot of things.

I am not disputing that my wife has CFIDS, or that autoimmune hemolytic anemia can cause fatigue, or that exposure to an environmental toxin can mess you up. I am disputing that CFIDS is a disease caused by autoimmune hemolytic anemia. Hemolytic anemia has clear symptioms which CFIDS lacks.

Once I thought - check for these things because not all symptoms are present at the same time … there is a different ‘look’ in the beginning years vs the later years.

From the page you link:

Is there blood in urine? Tested repeatedly, none present.
**Check the kidneys. ** Also tested repeatedly, completely normal.
Check pituitary Also checked. Fine.
**Bacteria in blood & urine would not be uncommon ** Not uncommon in a lot of people, and I wouldn’t be suprised to see it in someone with an immune disorder.

I think it would help to LOOK at the red blood cells, as the key is there somewhere AND there is an actual test for hemolytic anemia.

Looking at the blood cells is exactly what we’ve had done! She’s had repeated blood tests. Size and count of red blood cells normal. Normal except for the white blood cell counts. Hemolytic anemia ruled out due to normal blood cell count and size, and lack of blood or hemoglobin in the urine.

One woman shared all about her mother’s tests for AIHA she had saved her mom’s medical records from 1975. She was about 38 and was married to a gulf war vet. They both had the symptoms. I felt so sorry for her, but had a look at information that was helpful in understanding.

You know, as interesting as that may be, anecdotal data on individual people isn’t going to establish the overall cause of a disease. So my wife’s condition, though an interesting contrast to your theory, doesn’t determine anything one way or the other. So I ask again: Do you have any data showing that CFIDS sufferers show symptoms of hemolytic anemia, or that people exposed to 2-butoxyethanol have a greater chance of developing CFIDS? Data, not scattered anecdotal reports.

I think good nutrition and glyconutrient food supplements is the best help for this group, more than medications, unless the meds are essential. They say for the chemically poisoned they should avoid other chemicals as much as possible

“avoid other chemicals” - dearie, water and oxygen are chemicals. To avoid all chemicals you’d have to be hurled into deep space away from all other matter. I presume you mean artificial or man-made chemicals. I’d point out that there are a lot of quite harmful naturally ocurring chemicals, and man-made chemicals which can actually help you when you’ve been poisoned.

We have found some sucess with her diet. Food high in potassium seems to help; I have heard some indication that unusual ion channel activity might be involved in CFIDS. But nothing has helped her as much as medication. It took a while to find the right combination of drugs, but when we did it was like night and day; after just a few days on amytriptlyne she was sleeping soundly and had much less pain during the day.

[Mother-Margaret]

What you share is a mystery to me.

When did her symptoms start, and does she have for sure CFIDS?

No, I am saying that 2-butoxyethanol causes hemolytic anemia. Find good MSDS info and that is undisputed. But it is not waving any ‘red flags’ and I still believe this is the fatigue that is evading medical science and THE KEY to proof of this chemical’s harm (along with blood in urine). And I suspect it causes an immediate and continuing autoimmune immune system.

When I say look at the red blood cells, I am not saying get the tests on red blood cells, I am suggesting that the lab techs put the blood under a microscope and LOOK at them. In the very beginning the red cells should look like they have ‘bites’ out of them (immune system attacking them). Over time, the become small-sized. I don’t know what that means … A couple of years later there should be ‘fragility of red blood cells’ … membranes not acting right.

Lab Techs only do just what the doctor orders, so maybe a list of things to check would be helpful.

In Slim’s case, I suspect he is close to collapsing from wearing out an overactive bone marrow. Both making of red blood cells and immune cells has been working overtime, until they ‘wear out’ He has been to the doctor multiple times in recent years from collapsing. They can’t find out what’s wrong with him. Once they put him on an expensive heart monitor machine and found that 3 of his 4 heart chambers were double their normal size.

Swollen glands & organs is also another sign of this chemical’s harm.

If he’s even still alive (haven’t talked to him in several months) … & should he collapse again, it will just be ruled a heart attack, as many times is the case.

Well, I think I’ll get back to NIH as they were interested in my theory on 2-butoxyethanol harm … but I have to find a researcher to work with, they said. All we need to do is find the Exxon Valdez oil spill cleanup workers with known exposure to 2-butoxyethanol: Inipol EAP 22 was 12% strong; Corexit was 38% strong (Since sold to the Dept of Defense … isn’t that great? … and not even selected for use on the oil spill cleanup)

I know this, there have been so much more cancers & brain tumors, & diabetes in Valdez since 1989 … and I’m sure the contrast to the 17 years prior to 1989 would verify that 2-butoxyethanol has harmed the citizens of Valdez, too. Not even our 3 local doctors are interested in this. Why should they be? They are busy just patching people up, and why should they do anything differently.

Does anyone have any idea why Sandy’s red blood cells have ‘spikes’ on them? She was harmed by photo-printing chemicals. But she explained about using a strong cleaner, as yet unidentified which I think would have a strong amount of EGBE or 2-(2-butoxyethanol). You can buy triple & quadruple 2-butoxyethanol in the Orient. With all their industrialization & lack of caution in use of chemicals, it’s no wonder they are concerned about 10,000 children with Autism in Shanghai.

[nameless]

@Mother-Margaret

No, I am saying that 2-butoxyethanol causes hemolytic anemia. Find good MSDS info and that is undisputed. But it is not waving any ‘red flags’ and I still believe this is the fatigue that is evading medical science and THE KEY to proof of this chemical’s harm (along with blood in urine). And I suspect it causes an immediate and continuing autoimmune immune system.

So are you now saying that CFIDS patients do not exhibit hemolysis? I just want us to be clear here.

When I say look at the red blood cells, I am not saying get the tests on red blood cells, I am suggesting that the lab techs put the blood under a microscope and LOOK at them. In the very beginning the red cells should look like they have ‘bites’ out of them (immune system attacking them).

Blood smears (a test where blood is drawn and looked at under a microscope) are a common blood test. In fact, it’s probably been done repeatedly on anyone with CFIDS symptoms. Furthermore, your contention that red blood cells with “bites” taken out of them is a sign of an autoimmune reaction is just hilarious.

Look, it’s pretty clear that you have a hypothesis and you want it to be true… so you’re contorting the evidence to show that 2-butoxyethanol is the culprit. AndrewL has shown you a pretty reasonable theory (autoimmune dysfunction), and you’ve responded by saying that 2-butoxyethanol probably causes that too. Where does it end?

[AndrewL]

@Mother-Margaret

What you share is a mystery to me.

It’s not a mystery to me. My wife has CFIDS. She does not have hemolytic anemia. Hemolytic anemia is readily detectable by blood and urine tests, and is not associated with CFIDS. CFIDS does not appear to be caused by hemolytic anemia.

When did her symptoms start, and does she have for sure CFIDS?

They started in the spring of 2000, although she’d had periods of mysterious fatigue and illnesses as a child and has always had a compromised immune system. She has been diagnosed with CFIDS, as her symtoms are completely consistent with the disease and every test for anything else that might cause them has come up negative. Of course, the true cause of the disease still has not been conclusively determined, and it’s possible that there might be several different things that can cause chronic fatigue, so saying that someone has CFIDS doesn’t really nail down the definite cause of their illness.

No, I am saying that 2-butoxyethanol causes hemolytic anemia.

That may well be; I’m not familiar with the chemical. And I don’t dispute that hemolytic anemia can cause fatigue, or that there might be a lot of people in the world with damaged immune systems or blood caused by exposure to toxins who have fatigue as a result. But hemolytic anemia will cause readily detectable changes to the blood and urine, which are not seen in CFIDS. I think you’re barking up the wrong tree here, possibly making the mistake of identifying a real condition and then falsly concluding that it’s associated with or the cause of CFIDS. CFIDS has been studies, it appears to be an immune system disorder, but it is not associated with hemolytic anemia. I suspect that it’s a genetic condition, possibly aggrivating by environmental stress, but the jury is still out.

[Mother-Margaret]

… which I suspect is autoimmune hemolytic anemia.

It was my doctor who told me that hemolytic anemia is easy to find, that the red blood cells would have ‘bites out of them’ Well, maybe initially, but I think it must look different over time.

If there comes a time when there is no blood showing in urine, but someone has had fatigue for a LONG, LONG time, then check the peripheral blood.

There is also a possibility of paralysis with this type of damage to the bone marrow. Red blood cells can be made where other organs have stem cells, like the spleen & liver.

I would like to know if all doctors give an accurate diagnosis for CFIDS?
Although some believe there is such a thing, others do not.