My immunologist (researcher, not practicing) said something along the lines of: "There's something going on there, but I'm not familiar with the pattern, so I can't help you." The immune system is very complex, with lots of interactions, so it's not as simple as: "CD4:CD8 ratio is high, so here's a prescription for CD4:CD8 ratio reducer (which affects absolutely nothing but that ratio)".
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Does anyone here NOT have EBV, HHV-6, or CMV?
- Thread starter sometexan84
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My immunologist (researcher, not practicing) said something along the lines of: "There's something going on there, but I'm not familiar with the pattern, so I can't help you." The immune system is very complex, with lots of interactions, so it's not as simple as: "CD4:CD8 ratio is high, so here's a prescription for CD4:CD8 ratio reducer (which affects absolutely nothing but that ratio)".
EddieB
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The hematologists I saw said the same thing about my screwy lymphocyte and iron levels. Something going on but don’t know what...
sometexan84
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It's important to try and open up the mind a bit, and to try looking at like you're solving a crime. The more clues you have, the more likely you are to unravel the sequence of events, and see the bigger picture.
If you find abnormal results for something, it can help in finding out some of the root causes. Or it could lead you to discovering other conditions you might have, which would then be another great clue. It could also be normal results, in which case you can rule out other things, which is also helpful. It can also be used as a potential benchmark for measuring improvements after treatments.
That said, you do need to somehow be able to interpret the results, or find out yourself through research.
I tried that for quite a few years. Whenever I had a new hypothesis, I'd check those cytokine abnormalities and see if they fit. Still looking for a pattern...
sometexan84
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I really am sorry, I'm very aware of how frustrating it can be. And angering. For me, I've mostly had feelings of being pissed off. PO'd that doctors can't help, and PO'd that this condition has stolen 2 yrs of my life.
So then I said enough is enough. 4 or 5 mo ago, I decided to buckle down and fix it.
I'm getting close to 100% now. And hopefully you can get something useful out of the write-up I do, which I'm not going to do until I'm literally at 100%.
EddieB
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I talked to the immunologist today. She said she could prescribe 1000 mg per day of valcyclovir, on going, but no more.
Is 1000 mg a day a waste of time? Or I guess I could try and buy more somewhere?
Is 1000 mg a day a waste of time? Or I guess I could try and buy more somewhere?
heapsreal
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Have you ever had blood work comeback saying you have hemolytic anemia?
Ive had hemolytic anemia a couple of times but my iron levels to seem to vary alot and usually low to.midrange which suprises me as im mostly on a low carb diet which involves alot of meat.
heapsreal
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In my early days of cfs after the original ebv infection i tested positive for life long igg. About 7 years later this igg test was negative. I dont have access to the other more advanced ebv testing with tires etc
EddieB
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No, no one has mentioned that. I saw two different hematologists and had a bone marrow test. The second guy was pretty thorough, did live blood slides, ordered extra tests, etc, but didn’t find anything conclusive.
He suggested I try an iron supplement anyway. Pills made me horribly sick. I did have success with trans dermal patches. My iron levels increased, but I didn’t feel any better, and maybe a little worse.
I don’t know what to make of it. There have been times where I felt pretty good and had poorer test results, and times where blood work was improved and felt awful. I’ve lost a lot of faith in test results.
I’ve also read about the body’s ability to hide iron from circulation when it detects (or thinks it detects) a pathogen. I question whether or not this could alter test results. Haven’t been able to find an answer to that one.
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