Cort and other members....on pyruvate and lactic blood work

sheri

Member
Hello Cort and others
I had read a month or so ago on this forum about the pyruvate and lactic acid blood test for those with CFS
After having CFS and Fibromyalgia and MCS for 30 some years I decided to ask my internist about these tests
and he said this was interesting..to him and wrote me a pres to go to the hospital lab to have them done..
I have seen this internist group for 20 years...and of course there is nothing they can do but treat pain or
symptoms ...so I never ask for anything...when I go once a year.. I just get normal blood work done...

SED rate, red blood cells test and WBC count and normal blood workup..once a year..

My SED rate is 30 top of the chart...Red blood cells irregular and low WBC count
every year...for 30 years...
The SED rate started out real low then it rose to 30 the last few years...

I called medicare and after holding the phone for one hour and just totally exhausted they said the doctors office needs to call with the prices of each test and code not you..
So my question is..are these test covered by medicare totally as all other blood work is ...when ordered by your doctor?
Has anyone had these test done and does it show how much oxygen is traveling through the body and cells
or what benefit would it be to have these two test done for a person who has CFS or myalgic encephalomyelitis?

My wanting to have them done is to show my internist that I do not get enough oxygen and have not for 30 years
with cfs...

I am breathless most of the time and just want some proof...as all heart test have been done
and nothing shows up...I can not stand still because I feel like I will pass out...but if I move fast
when walking it seems to pump blood upwards or get more oyxgen to the brain and heart area..

What time of day would be best to show the least amount of oxygen in the blood if these test show that
you do have to fast 4 hours before the blood is drawn...

I plan to go next week if the tests are covered...with medicare only no supplement with medicare..

anyones thoughts on whether these tests show anything that is going to be enlightening to the internist
or to those wanting to get diagnosed with CFS that can not get a diagnosis ?

Husband and I both have CFS, Fibromyalgia and multiple chemical sensitivity illnesses.

Thanks
Sheri
 

sheri

Member
do you think the test would be of any benefit at all to have these two test done?
Would they show anything helpful to an internist concerning CFS?
Sheri
 

sheri

Member
Cort
do you have an opinion on whether the two blood tests would help an internist
learn anything about CFS or not from me the patient having these 2 blood
tests done?
Sheri
 

sheri

Member
Just to say I had both tests done at a hospital lab here in Alabama.
I have not heard from my internist yet..but I will.
I hoped to find someone who had the test done since I read about it on this forum and
that is what made me decide to ask my internist could I have those done
I may not understand what the results are in relation to having CFS...
Perhaps someone on here will respond so that I know who to tell the outcome
of the two test to..and ask them their opinion...
December 14 , 2015
Sheri
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Hello Cort and others
I had read a month or so ago on this forum about the pyruvate and lactic acid blood test for those with CFS
After having CFS and Fibromyalgia and MCS for 30 some years I decided to ask my internist about these tests
and he said this was interesting..to him and wrote me a pres to go to the hospital lab to have them done..
I have seen this internist group for 20 years...and of course there is nothing they can do but treat pain or
symptoms ...so I never ask for anything...when I go once a year.. I just get normal blood work done...

SED rate, red blood cells test and WBC count and normal blood workup..once a year..

My SED rate is 30 top of the chart...Red blood cells irregular and low WBC count
every year...for 30 years...
The SED rate started out real low then it rose to 30 the last few years...

I called medicare and after holding the phone for one hour and just totally exhausted they said the doctors office needs to call with the prices of each test and code not you..
So my question is..are these test covered by medicare totally as all other blood work is ...when ordered by your doctor?
Has anyone had these test done and does it show how much oxygen is traveling through the body and cells
or what benefit would it be to have these two test done for a person who has CFS or myalgic encephalomyelitis?

My wanting to have them done is to show my internist that I do not get enough oxygen and have not for 30 years
with cfs...

I am breathless most of the time and just want some proof...as all heart test have been done
and nothing shows up...I can not stand still because I feel like I will pass out...but if I move fast
when walking it seems to pump blood upwards or get more oyxgen to the brain and heart area..

What time of day would be best to show the least amount of oxygen in the blood if these test show that
you do have to fast 4 hours before the blood is drawn...

I plan to go next week if the tests are covered...with medicare only no supplement with medicare..

anyones thoughts on whether these tests show anything that is going to be enlightening to the internist
or to those wanting to get diagnosed with CFS that can not get a diagnosis ?

Husband and I both have CFS, Fibromyalgia and multiple chemical sensitivity illnesses.

Thanks
Sheri
I wish I knew more but it seems like you are on the right track. Have you been tested for POTS or done any tests for autonomic dysfunction?

This really jumped out at me " if I move fast when walking it seems to pump blood upwards or get more oyxgen to the brain and heart area.." That sure sounds like OI and dysautonomia to me. It could be that the blood vessels in your legs are not constricting when you stand. That's sending the blood slamming down into your legs. It may be better when you walk faster because something called the muscle pump is locking down your blood vessels a bit when you exercise. Thus you're getting a bit more blood to the brain.

Let us know how it turns out.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort
do you have an opinion on whether the two blood tests would help an internist
learn anything about CFS or not from me the patient having these 2 blood
tests done?
Sheri
I think a positive result from those tests could be valuable for an internist who is interesting in learning what they mean. I imagine it could open up a lot for the right doctor...
 

sheri

Member
I think a positive result from those tests could be valuable for an internist who is interesting in learning what they mean. I imagine it could open up a lot for the right doctor...
Hi Cort
thank you for your thoughts and taking time to talk to me on here.
I got the results of the lactic acid test yesterday and they were normal
I will get the other test results this week and I think they will be normal
on the pyruvate test..
so the Pots or orthostatic intolerance most likely is the reason I have
difficulty for so many years standing still with such weakness and out of
breath...I may not go get tested for that..since they do an entire heart workup
and that is expensive..and then they can not do much about it from what
I have read...
Thank you again, SheriT
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
That's too bad about the expense. It would be good to know about POTS. Nothing is certain but some things do work for some people. There's a nice summary here.

Let us know about pyruvate....
 

loki

Well-Known Member
hmmm... i experienced these 'standing still and out of breath' symptom for 15 months after my Interferon treatment. When i walked i felt like passing out all the time! It was horrible. What really made a difference was curcumin in a lipid emulsion formulation 48mg q.i.d. I'm still weak but nothing in comparison to the 15month nightmare after treatment!:dead::woot:
 

sheri

Member
Hi Cort
and other members
I have the results from the pyruvate test ..Does anyone work in the medical field in a lab
or a doctor on the forum that could give some thought if this low score shows
the fatigue being the reason...of the low score..or does it possibly indicate other
illnesses.. My results were 0.1 on a scale of 0.3-0.7

the lactic test was within normal range..mid way on the scoring...scale..

I hope to learn something as to if this is related to the cfs illness or
something else..I read about these two test on this forum Health Rising
and decided to pursue getting them done 90 miles from here at a hospital..
Any thoughts from anyone is appreciated
Anyone else ever had these two test done and for what illness?
thank you
Sheri
 

sheri

Member
Hi Cort
and other members
I have the results from the pyruvate test ..Does anyone work in the medical field in a lab
or a doctor on the forum that could give some thought if this low score shows
the fatigue being the reason...of the low score..or does it possibly indicate other
illnesses.. My results were 0.1 on a scale of 0.3-0.7

the lactic test was within normal range..mid way on the scoring...scale..

I hope to learn something as to if this is related to the cfs illness or
something else..I read about these two test on this forum Health Rising
and decided to pursue getting them done 90 miles from here at a hospital..
Any thoughts from anyone is appreciated
Anyone else ever had these two test done and for what illness?
thank you
Sheri
I did find out on line that my results indicate that my Red blood cells are not able to carry enough oxygen to the vital organs....so the test did prove that....

this would be a good test to aid in diagnosing CFS or myalgic encephalomyelitis...same illness...
I have had the illness for over 30 years...but at least I found one t est mentioned on this forum
and I had it done concerning my breathlessness and fatigue.
 

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