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Old 06-03-2019, 03:14 PM
 
6,220 posts, read 4,718,283 times
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Quote:
Originally Posted by brightdoglover View Post
...... To hospital tomorrow to rerun tests. Thank you all for your good wishes.
Glad to hear many issues appear to have been ruled out. What tests are being redone and why?

 
Old 06-03-2019, 03:31 PM
 
13,314 posts, read 25,546,272 times
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Quote:
Originally Posted by jrkliny View Post
Glad to hear many issues appear to have been ruled out. What tests are being redone and why?
My doc is squirrely about the tests being done by a non-MD, and also said that a couple of them need to be done in a hospital lab setting for proper handling (ice) and I don't remember my FM doing that.

iron deficiency anemia Iron + TIBC + Ferritin, iron deficiency anemia secondary to chronic blood loss
Fatigue ANA titer and pattern
Erythrocyte sed rate Westerngren
CRP

Hyperhomocysteinemia Homocysinuria
B-12
MMA (Methylmalonic acid)
Homocysteine

I offered to pay for any tests not covered but she said the above are covered.
 
Old 06-03-2019, 03:47 PM
 
Location: Idaho
1,451 posts, read 1,153,086 times
Reputation: 5472
Quote:
Originally Posted by Windwalker2 View Post
In the early 90's I was working at a medical school. A group of us began having odd symptoms, including fatigue and short term memory problems, asthma, etc. It turned out that the air in our offices was contaminated with higher levels of formaldehyde, xylene, toluene, and other chemicals. It's not an IgE type allergy, it's a toxic reaction because we lost the ability to break down chemicals. Formaldehyde is common in medical facilities, and in furniture, paint, carpeting, clothing from the Far East, vehicle exhaust, etc. etc. We never recovered from it, and have to continue to keep our homes very chemical free and avoid exposures elsewhere.
Windwalker2,

I raised the possibility of chemical allergy when BDL first reported her recurred fatigue problem shortly after moving to her new house in Colorado.

BDL,

You have my utmost sympathy. I hope that some specialists come up with the correct diagnosis or find a cure for your fatigue problems.

Have you had a chemical sensitivity test done or have a house air sample analyzed? One possible way to rule out the contribution of your new home to your CFS is to take a vacation. If you stay in an older building with wood floor, no new carpets or materials, and the symptoms subside, this may indicate that certain material in the new home is the cause.
 
Old 06-03-2019, 06:03 PM
 
6,220 posts, read 4,718,283 times
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Quote:
Originally Posted by brightdoglover View Post
......

I offered to pay for any tests not covered but she said the above are covered.
Don't pay for any tests not covered. Don't sign a lab ABN (Advanced Beneficiary Notice) which will obligate you to pay. You will be charged full price which is often many, many times what Medicare would pay. If the test is that important and critical to a diagnosis or care, there is almost always a proper ICD 10 code which will apply and result in Medicare coverage.

BTW, I hope you are not going to accept a diagnosis of Chronic Fatigue Syndrome. CFS has no diagnostic criteria, no know cause, no treatment, no cure. Those are just words that mean they have not determined the cause of your fatigue.
 
Old 06-03-2019, 06:15 PM
 
13,314 posts, read 25,546,272 times
Reputation: 20486
Quote:
Originally Posted by jrkliny View Post
Don't pay for any tests not covered. Don't sign a lab ABN (Advanced Beneficiary Notice) which will obligate you to pay. You will be charged full price which is often many, many times what Medicare would pay. If the test is that important and critical to a diagnosis or care, there is almost always a proper ICD 10 code which will apply and result in Medicare coverage.

BTW, I hope you are not going to accept a diagnosis of Chronic Fatigue Syndrome. CFS has no diagnostic criteria, no know cause, no treatment, no cure. Those are just words that mean they have not determined the cause of your fatigue.

Thank you, I signed nothing and the issue was moot.

I think that thinking about CFS has come a long way since I had what I think was a second and very severe bout of mono in 1990 and I read about "Yuppie woman flu" aiming at white women in the 30s or so, usually middle-class. The doc today said that current work is implying that it might be nerve-related and is not considered auto immune. CDC/NIH put it together with fibromyalgia (which I am not experiencing) with the understanding that they might well prove to be totally separate issues.

I think I generate the diagnosis of CFS. I know I am not imagining this fatigue and the doc agrees that chronic fatigue is a real thing, not "in one's head." Aside from getting treated for the low ferritin, I do not know what else to do. I will continue to follow the functional medicine supplements (which include iron/C) but I don't have much faith in the FM approach, however cellular it may be explained to me.
 
Old 06-03-2019, 06:36 PM
 
6,220 posts, read 4,718,283 times
Reputation: 12730
And recurrent EBV was totally ruled out?

Anyway, my wife had a CFS diagnosis. Years later she found out she has Celiac Disease. She has been totally off gluten for years but if she gets any by accident she is hit with fatigue, aches and pains and just plain feels bad. Her latest round of fatigue was finally diagnosed as babesiosis. It took months to arrive at a diagnosis. She was treated twice and it has recurred again so she is being treated again with antibiotics and antimalarial drugs for 3 weeks, then a week off and then 3 more weeks.

Maybe there is some undiscovered, nerve related, no fibro disease that is waiting to be discovered. I still bet a whole lot of people have fatigue due to causes that could be identified and possibly treated.

Anyway, best of luck. Hang in there and don't give up.
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