Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by juniemarie, Jan 22, 2010.
My kid's doctor is willing to see how many more tests (than the standard ones eliminating suspicion of thyroid trouble or mono spot etc) she can get approved for him. So I thought for a few minutes that what I would do was compile a list of tests, with next to each test a list of the specialist clinics, doctors or publications that recommend that test. It was the thought of a moment but of course would be the work of weeks for me in my current state. So here I see the beginnings of such an effort, hooray!
I write a blog called VLG on VALCYTE blog. iF YOU SCROLL DIWN A FEW BLOGS....I give information as to what laboratory tests to have doneAT QUEST LABS ONLY, I LIST THE ACTUAL TEST CODE numbers and the insuranxe code Billing numbers.yOUR md CAN GIVE YOU A LAB SLIP TO TAKE TO QUEST LABS TO HAVE THESE RUN. I also spell out or road map positivity values to determine if you are 3X OR higher positivity for EBV and HHV-6A, then you are a candidate for antiviral therapy.Also...co-infectionsare listed as well as ARE test Codes for these. I'ven given a measurement scale so you can read your own labs, as most MD's are unable to do this. Best of lUCK,jULIA
one more Mitochondrial function test by Acumen Ltd Tiverton Devon England Including DNA adducts, and mitochondrial membrane TL protein studies
Great thread ... The level of intelligence on this board is sooo re-assuring ... : )
I was wondering though if someone has a top down approach to this ? As in, if we tested positive for problem x, then tests 1,2,3,4,5 and 6 were going to be positive too so there's no need to get these run. It might save us some time and money ... not to mention all that blood !!!!
I'm still what I consider a newbie to all of this but if I were going to look at this from the top down, I'd start with a CDSA, hormones, and nutritional deficiencies test but that's only because that's how my integrative doc did this ... The idea being that the problems found in these tests would cause 1,2,3,4,5 and 6 ...
My GTT + insulin was helpful too though since it showed that I was producing too much insulin. It just serves to remind me that if I eat too much sugar of any source, my body is going to send out an army to try to KILL it ... lol ...
thanks in advance ... x
Xchocoholic Excellent idea. I am still at a loss as to where to begin with testing. Money is tight and I dont want to test willy nilly........need more of a plan so I can spend wisely
I bumped an article about cytokines that was on PH a few years ago thinking that may help us here. I need to reread it myself but I really need to vacuum and bath my dog today ... so I'll have to get back to it ...
BTW ... Did you know that Medicare will pay for some of our tests ? That's certainly saved my life ... : ) ... They've paid for my CDSAs, Spectracell nutritional tests, Hormone tests and of course all those regular tests ... I'm not sure how this relates to our diagnosis though. I know when I have my labs drawn that the lab ensures that Medicare will pay for them though ...
This thread is really a GREAT idea ... I was SOOOOO ANGRY when I learned that I'd wasted all those years by not having the right tests ... grrrrrrrr ... tc ... x
Xchocoholic Thats great and timely news as I am in the process of getting Medicare right now.......the bewitching hour is Jun1 and now thanks to you I know I can look forward to being able to do some testing I have never been able to afford! At least 1 plus for turning 65 lol
I hope these haven't already been mentioned -
CT w/ contrast
Trans-Cranial Doppler (to look for large ASDs and PFOs)
30-day Cardiac Monitors
King-of-Hearts Event monitoring
Tilt-Table test (for POTS/OI)
Observational neurological testing (can you walk a straight line w/ your eyes closed, etc.?)
Psych. Eval. (These are always fun.)
Hormone testing (usually spit test) followed by:
Ultrasounds for the girls (to rule out [or in] comorbid contitions such as cancer, PCOS etc.)
Bronchoscopy (for those of us who have lungs that refuse to do their job well)
Sleep studies (including, but not limited to pulse ox. overnights and sleep behavioral studies)
It's such fun to be ill. E.
I had a lot of different heart tests included in my tests to really rule out heart issues (due to bouts of unconsciousness)
- Exercise stress test
- Ultrasound on my heart
- 24 hr monitoring which did both the BP and the heart rate at same time.
Something which I dont think has been mentioned but is handy to know is if you have a polymorphism which causes hypercoagulation eg MTHFR polymorphism (16% of people in some countries have it, this also affects the methylation cycle). I had that confirmed by a Thrombophilia genotypes test .. after my specialist noted my homocystine was in the upper ranges of normal.
For testing insulin.. make sure it is at least a 2 hr Glucose tollerance test with insulin (one can be tested after ones breakfast to see how ones body responds to what you eat). (anyone who who has missing periods or abnormally long menstrational cycles say over 32 days should really consider this as insulin issues are the norm with PCOS which causes both those things.. insulin issues arent uncommon in ME/CFS).
Rickettsia test (up to half with CFS have Rickettsia in some places).
Hair tissue mineral analyses testing for toxic metals and trace essential minerals etc. (In Australia I highly recommend it getting done throu InterClinical Laboratories which you can send sample from anywhere in Australia.. I guess they'd do overseas too?.. its about $130 throu a doctor or $150 without a doctor and comes with a very intensive report and treatment plan suggestions to follow). www.interclinical.com.au
They've already been mentioned but tests you can do yourself are Romberg's http://en.wikipedia.org/wiki/Romberg's_test
and also POTS testing (poor mans test POTS test) by taking heart rate when one has been laying a while and then on standing over a 12min time period http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
You may also want to leave some urine out in the sun for a while to see if it under goes strange colour changes .. as that can pick up some Porphyria cases (some have said that some CFS cases are undetected Porphyria.. which causes sensitivity to chemicals, certain foods, constipation and IBS, tachycardia, mental health issues and other symptoms) http://en.wikipedia.org/wiki/Porphyria
Though briefly mentioned I would like to know how many have been tested for chlamydia pneumoniae (or other variants). Here in the bay area there is a lot of undiagnosed walking pneumonia and often people end up in the ER after having been misdiagnosed with asthma etc. It also has the potential to become chronic and has been linked to CFS/FM by stealing ATP from the cells (methylation anyone?), see this article from 2007: http://www.prohealth.com/library/showarticle.cfm?libid=12763
Maybe we can have a sticky poll how many tested positive/negative?
Why not start a poll? I test positive for a past infection (apparently not reactivated). Not sure how to construct polls here--can you only choose one option? If possible it might be interesting to break it down into "active," "reactivated," and "past"--and if you could include "not tested" some way. I'd guess the majority of us have not been tested.
Tests listed here
http://forums.phoenixrising.me/show...Repository and Treatment Review Project:Tests
ER is Emergency Room
I took the ESR test and ruled out Chronic Fatigue for myself based on that. Here is one website that covers it, but there are others that say this is THE test. (Don't know what y'all think of that?) http://www.emedicinehealth.com/chronic_fatigue_syndrome/page3_em.htm
I actually have adrenal, thyroid, and anemic conditions (all minor but all contributing to fatigue) so no one would ever look any further.
Have you all found the ESR lab to be out of range?
You cant rule out ME/CFS based on ESR. My ESR is fine (well just, its nowdays borderline..but it took 7 years to get to that point as it only increases by one each year Ive had this illness).
You do need to treat any other conditions you actually have thou and rule those out from being the cause of your symptoms, before ME/CFS can be considered.
What's ESR and what are the correct parameters for you?
here are basic CFIDS tests from Stanford http://www.treatmentcenterforcfs.com/FAQ/index.html#Tests
we use a lighter version from Quest as published on the VLG on Valcyte Blog and if the HHV-6, EBV and CMV plus a few pathogens come back poistive, then we do all the tests. Metabolic Comp. Panel is crucial. We add DHEA-S and TNF-Alpha (a measurement of NK cells) and C-reactive protein as well.
Hope these help....
Which tests are sufficient to support disability and also help determine a plan of action for improved function. What I have gleened so far is:
Methylation Pathways Panel (Heath Diagnostics Lab NJ) $189 US
Yasko or 23andme to ident SNPs $495/$207 prepaid
Metobolic profile from Genova (is that the NutrEval FM or a different test) $??
24hr Urine tst fr Direct Labs $??
How about the gut anyone want to weigh in on a good gut test? $??
Is mitochondrial dysfuntion addressed by one of the tests I listed or is another test needed?
Is this the minimum to help verify CFS and get a plan in place?
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