Poll What Have You Not Been Tested For?

What Have You NOT Been Tested For.

  • Lyme Disease (Other than the ELISA test)

    Votes: 39 59.1%
  • Mold Toxins

    Votes: 47 71.2%
  • More Specific Thyroid Tests (T3, Parathyroid)

    Votes: 23 34.8%
  • Small Intestinal Bowel Overgrowth (SIBO) - breath test

    Votes: 51 77.3%
  • Gluten Sensitivity (By cutting off gluten totally)

    Votes: 27 40.9%
  • Candida

    Votes: 36 54.5%
  • Herpesviruses

    Votes: 22 33.3%
  • Sjogren's Syndrome using a lip biopsy

    Votes: 56 84.8%
  • MTHFR Mutations

    Votes: 45 68.2%
  • Testosterone

    Votes: 33 50.0%

  • Total voters
    66

Folk

Well-Known Member
Hello.
Blood-in-test-tubes.jpg


This is about some of the more controversial tests that some ME/CFS/FM experts use. My question is - how many patients have gone through these tests? (I'm certainly forgetting some - please suggest others in the comments below.)

Thanks!
 
Last edited by a moderator:

tatt

Well-Known Member
if you are in the UK you may not have been tested for lupus or RA or had a coeliac blood test. You probably won't be tested for low vitamin D levels either, one you might want to add to the poll.
 

Folk

Well-Known Member
if you are in the UK you may not have been tested for lupus or RA or had a coeliac blood test. You probably won't be tested for low vitamin D levels either, one you might want to add to the poll.
:eek:
Really!?!? That's scary..
But the insurance will cover it if you go after won't it?

Well the point of Low Vit D is that it's not excluding. I've been tested for it and had low levels, but that didn't change the Diagnosis (just went through that whole chicken or the egg stuff).
 

corinne

Member
I've done all but two...all negative except for herpesviruses. I'm probably one of the few who has done the wonderful lip biopsy. I say wonderful because 1 1/2 years later that side of my lip is still numb :( .
 

Patty May

Member
I haven't had any of the tests, but vitamin D testing is a must! I live in Washington state, most of us here need supplements. Not everyone is aware of that. My Dr. actually advised the tests at our annual physicals several years ago. My husband and I were both really low! We took prescription strength vitamin D for several months, then could take over the counter. He said that the test should be more regularly done here. The symptoms were a lot like ME/CFS. with fatigue and an exhausted feeling all the time.
 
:eek:
Really!?!? That's scary..
But the insurance will cover it if you go after won't it?

Well the point of Low Vit D is that it's not excluding. I've been tested for it and had low levels, but that didn't change the Diagnosis (just went through that whole chicken or the egg stuff).
I was tested for Vitamin D and told to take 50,000 mg for 2 weeks. Didn't notice a difference and no one ever followed up on it so. So much for that
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I haven't had any of the tests, but vitamin D testing is a must! I live in Washington state, most of us here need supplements. Not everyone is aware of that. My Dr. actually advised the tests at our annual physicals several years ago. My husband and I were both really low! We took prescription strength vitamin D for several months, then could take over the counter. He said that the test should be more regularly done here. The symptoms were a lot like ME/CFS. with fatigue and an exhausted feeling all the time.
Thanks Patty - I'm going to make a list of tests patients should consider - so thanks for mentioning Vit D. Did you notice any difference after taking it?
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I've done all but two...all negative except for herpesviruses. I'm probably one of the few who has done the wonderful lip biopsy. I say wonderful because 1 1/2 years later that side of my lip is still numb :( .
It's Corinne!

(Sorry about the lip biopsy!)

Good to see you on here :)

Where is my next blog? :jimlad:
 

justME

Active Member
it took ´em 10 years and 3 neurologists to offer me a spinal tap which is, looking back and having a viral onset and neurological issues like fuzzy vision, ridiculous

like it is that that´s not on your list :wacky:
 

goldenapple

Member
it took ´em 10 years and 3 neurologists to offer me a spinal tap which is, looking back and having a viral onset and neurological issues like fuzzy vision, ridiculous

like it is that that´s not on your list :wacky:
What was the spinal tap for? A spinal tap won't diagnose ME, so just curious what the benefit would be
 

Prashanti

Member
Thanks Patty - I'm going to make a list of tests patients should consider - so thanks for mentioning Vit D. Did you notice any difference after taking it?
I would LOVE to see a list of test patients should consider. I've had CFS for over 20 years and really didn't consider testing for anything until the last couple of years when I got medical insurance...yeah medicare. The doctors I have gone to over the years and even recently are clueless, but usually will order a test if I suggest it.
 

Shanti

Member
Definitely Vitamin D

Natural Killer Cell count and activity...tends to be low in people with ME/CFS

Ferritin, iron levels are basic

B12 the urine test is best forget the initials for it at the moment.

Cortisol levels would be interesting and may be relevant.

Free T4, Free T3, and thyroid antibodies, not just the TSH
 

Folk

Well-Known Member
Well the point of the thread is not about those tests that are an indication of ME/CFS as much as something that can exclude ME/CFS

If you have Lyme, Mold, Sjrogren than you don't have ME/CFS technically. Even though you might have the same (or simmilar) symptoms.
 

Linda B

Active Member
Hi,
Pyrroles, or Pyroluria is a disorder which can be checked quite easily. Not sure if it's blood or urine test. Causes the person to be unable to fabricate and utilise B vitamins and , I think, Zinc. This of course has knock on effects on copper levels and energy levels etc. you all know the drill.....the thigh bone is connected to the knee bone ....and all that! Worth have a read up about this. I am about to have my daughter tested soon since I have read about this from a friend who had thought she had a form of chronic fatigue for many years but has been now working to deal with high pyrroles and feels somewhat better for it!
 

kerry d

New Member
Hi,
Pyrroles, or Pyroluria is a disorder which can be checked quite easily. Not sure if it's blood or urine test. Causes the person to be unable to fabricate and utilise B vitamins and , I think, Zinc. This of course has knock on effects on copper levels and energy levels etc. you all know the drill.....the thigh bone is connected to the knee bone ....and all that! Worth have a read up about this. I am about to have my daughter tested soon since I have read about this from a friend who had thought she had a form of chronic fatigue for many years but has been now working to deal with high pyrroles and feels somewhat better for it!
My daughter has this illness and is improving by seeing a dietician who specialises in it as well as CFS. I've just started seeing her too so hoping for at least some improvement in my CFS.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Definitely Vitamin D

Natural Killer Cell count and activity...tends to be low in people with ME/CFS

Ferritin, iron levels are basic

B12 the urine test is best forget the initials for it at the moment.

Cortisol levels would be interesting and may be relevant.

Free T4, Free T3, and thyroid antibodies, not just the TSH
Thanks Shanti!
 

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