Diagnostic Lab Results Poll

[Valentijn]

Someone on the Methylation board asked if there were compiled results of the methylation lab results for people with ME/CFS. So here's a poll asking that, and everything else too. Please only indicate "abnormal" results if the results were outside of normal range (not low-normal or high-normal). And please only include results from actual lab tests (not the "poor man's tilt table test", etc).

Please answer "normal" or "abnormal" for each test you have had. Voting for multiple options is enabled.

 

[dannybex]

Thanks for starting this poll. I just realized I didn't fill in "normal" results for a couple of questions...but guess I can't go back in to redo it. Oh well...

Edit: I've had palpitations quite a few times, but every time I'm at the doctor's...everything's "normal".

 

[Valentijn]

Yeah, I didn't see an option for letting people edit their choices later.

 

[drex13]

With regards to Methylation, are we talking polymorphisms found in genetic testing (Yasko or 23andme) or abnormal results from the Methylation Pathways Panel testing ?

 

[Valentijn]

I'd think just from the Methylation Pathways Panel (and similar tests). The problem with genetic testing being that (if I understand correctly), it only indicates a disposition for things to go wrong, while they may actually be functioning normally. The polls are limited to 20 options, so couldn't cover everything.

 

[jimells]

The sleep study report was rather interesting. The 'findings' of the study was 'primary snoring', even though I seldom snore, including during the test. I was told 'everything's normal', in spite of the fact the report details include 'mild alpha sleep ... suggestive of norestorative sleep', 'markedly reduced sleep efficiency', and 'significant increase in REM sleep'.

I had the impression all they really cared about was obstructive sleep apnea (I don't have it) and narcolepsy. Beyond that, anomolies were ignored. So is the study 'normal' or 'abnormal'? I guess it depends on what one is looking for.

 

[WillowJ]

what if some heart, vitamin, hormone tests are fine and some are abnormal?

 

[Valentijn]

what if some heart, vitamin, hormone tests are fine and some are abnormal?

I'd call it abnormal. The main purpose of the poll is too see what's likely to be a useful test in finding our various problems, so I'd say any abnormal result in one category would be more relevant data than some results being normal in the same category.

In retrospect, I could have phrased the options better ... maybe "completely normal" or "nothing abnormal" instead of the "normal" option.

 

[WillowJ]

it's just that, for example, my heart tests were said to be normal for years, but I actually have SVT/IST (depends on the day or who interprets, not sure which), so it kind of depends which heart test and what they are looking for.

They ignore my rapid heart rate for a dozen years, then finally do something because I fly 2/3 of the way across the country to see a very kind ME doctor who diagnoses SVT (supraventricular tachycardia) and prescribes a med to slow my heart rate. Back home, they (this is a new "they" because I have once again fired all my doctors) refer me to cardiology, do more tests, rule out atrial fibrillation, diagnose IST (inappropriate sinus tachycardia) and continue prescribing med to slow my heart rate.

But they've been giving me an EKG now and then for the past dozen years (sometimes because I call and the advice nurse totally panics and then wants me to rush down and make sure I'm not having a heart attack--which I know I'm not; I just knew there was something that needed attention but wasn't an emergency) and pronouncing me perfectly healthy, which is hogwash. I even had an echocardiogram and it came back normal.

So on heart tests, it really depends 1) which test you are doing and 2) who interprets and what specifically they are looking for.

Generally, Holter monitoring is considered useful for PWME, but needs to have someone reading who knows how to read PWME's results (see the CCC for full discussion). Nuclear testing is, in general, considered more accurate than plain echocardiogram (for any cardiac condition). I think nuclear testing is similar to/same as the Peckerman protocol, although I'm not certain. Then there's a new procedure from Hollingsworth.

Same story on infections: requires ME doctor. On this one, tests for infections by standard doctor are a no-go (hello, no elevated WBC, no tests for infection), and in my experience, having results from ME doctor not especially helpful to non-ME doctor (this HHV-6 infection means what? but you do not have MS. I did not learn about this in medical school, nor in continuing education or professional conferences, sorry)

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