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That is interesting and I was wondering how you officially had your blood plasma level measured? Is that a common test or pretty rare?
It's somewhat rare, due to the price (about $2000 when I had it done). For this reason, I've heard ME/CFS doctors say (and I don't recall which ones), "Don't bother getting your blood volume tested - just assume it's low." But it seems that although that's usually the case, it may not always be. The best sign is that if you're thirsty a lot or get dehydrated easily, you most likely have low blood volume. Also, the incidence of low blood volume (either low plasma or low red blood cell count) is more than twice as high in people with severe CFS compared to people non-severe CFS, as documented by
this study (which used the Fukuda criteria).
The test is done in the Department of Nuclear Medicine; any hospital with such a department (i.e., almost all of them, at least here in the U.S.) should be able to do such a test. A fixed amount of blood is withdrawn from your arm, a small amount of the short-lived radioactive isotope chromium-51 is mixed in with the blood, and then the blood is reinjected into your arm. Then you wait about four hours, and a blood sample is withdrawn. By seeing how much the chromium-51 has been diluted, it is possible to calculate the total body blood volume, both plasma and red blood cells.
When the calculations are done, your weight is taken into account, as it affects how your circulatory system is laid out; not all parts of the body get equal amounts of blood. A more precise calculation can be made if your height is also taken into account, as this then determines the body shape and resulting blood distribution more accurately.
I mentioned that when I had my blood volume tested in 2000, the results were 25% below expected for the plasma volume. Both height and weight were used in computing this number; this was in Boston. In 2003, I had this test repeated here in Oregon, but only weight was used in the calculation, so the result was given as a range instead of a single number. Fortunately, the raw data was also present, so I was able to use the formula based on height and weight to get a more exact figure. The figure I got the second time was 30% below expected value for the plasma volume. There's some margin of error in these numbers, but it's not very great when you use both height and weight.
I am going to talk to my cardiologist & endocrinologist as both wanted me to take Florinef.
That sounds like a good idea. I want to respond in more detail to @
SOC's
latest post on this subject, but that will have to wait until tomorrow. Last night, I got something caught in my contact lens, so I took it out, rinsed it in the hydrogen peroxide cleaning solution (which I somehow thought was saline), and put it back in my eye.
Oops.
One of the worst things about doing something like that is that your eye reflexively clamps shut, so you can't get the lens out or flush the eye. I eventually managed to do both, but boy, did that hurt. It wrecked my sleep and I'm still pretty traumatized today; the pain should go away by tomorrow, and my vision is unimpaired. But I'm wiped out more than usual.
Wow, that is awesome that your cardio-pulmonary symptoms have not returned!
Yes, very nice indeed, although mine weren't as severe as yours. Nevertheless, it's really nice not to be gasping for breath all the time.
Because the heart beats all the time, it needs twice as much magnesium as any other muscle. It also needs a lot of energy, which is why fully half of the heart muscle cells are mitochondria.
How does someone get magnesium for a nebulizer?
It's actually very easy. You can get it on Amazon.com (of course). What you're buying is actually Epsom salts - basically the same thing you use for a bath. Epsom salts are actually nothing more than magnesium sulfate, which is exactly the form of magnesium you want for a nebulizer (or for injection). Just be sure to get some that's USP Pharmaceutical Grade, as that's the only kind that's certified safe for ingesting. I got the Epsom salts sold by the
San Francisco Salt Company. These are packaged for the bath; you can figure that each pound of salts will last at least a year if you use it with the nebulizer. That's less than a penny per treatment.
As for the nebulizer, I got a nice little Omron model at ADWDiabetes.com. Surprisingly, it's only $23.
Then you need to know how to actually put this all together and use it. Fortunately, Dr. Sarah Myhill has put together the comprehensive guides
Magnesium by injection and
Magnesium by nebuliser for all of us DIY folks. The nebulizer comes with extremely elaborate cleaning instructions, but these are designed for clinic use, and aren't really necessary for standard home use. Basically, you just have to clean all parts of the nebulizer kit thoroughly after each use.
No prescription is needed for either item.
I have no idea if this is something that could benefit me or even who to ask?
I was already taking a couple of magnesium supplements, and yet this made a huge difference. There are various magnesium tests you can do, but they don't really tell you what effect this will have on you. As this is extremely safe, Dr. Myhill tries the injection (or, more recently, the nebulizer) on all her patients, and the vast majority of them respond positively. It was her emphasis on this type of supplement that got me to try it; before I read her advice, I had no idea that I needed this type of supplementation. A full 80% of healthy Americans are deficient in magnesium; what do you think that number is among us? It's also very possible that we need more magnesium than healthy people to compensate for some of our various metabolic problems. If you follow the directions, you can't OD on the magnesium; as long as your kidneys are healthy, you'll just flush out any magnesium that you don't need.
I guess maybe my ND but she has never mentioned it.
Generally, most doctors know about magnesium by injection (both IM and IV), but very few know about magnesium by nebulizer. My ND didn't know about it.
High dose magnesium is also very good for curing asthma symptoms; it allowed me to completely get off heavy doses of Flovent, an expensive steroid inhaler.
Historically I do not do well with a high-dose of anything and need to start off super low on anything new and build up.
I'm that way too. For the magnesium, you might want to try starting off with half the recommended dose once a week, and gradually build up to the full dose daily. I started off with the full dose once a week and was fine. You would also want to do this right before bed, as it can make you rather sleepy.
If you find you're sleeping more than usual, or more tired than usual the next day, just back off the dose a bit temporarily. You should be able to raise it again after a while - maybe a week or so.
More tomorrow...
