Labwork Ordered - What would these tests show, if it is ME?

[RyeRyeBread]

I saw a new PCP today, and he gave me a referral to a rheumatologist

In the meantime, he ordered these tests:

[ANA w/reflex if positive, C-reactive protein quant, lyme antibody/line blot reflex, sedimentation rate-westergren]

If what I'm dealing with is in fact ME, what results can I suspect from these tests, if any?

Would any result from these "rule out" ME?

Thanks 😊

 

[Judee]

Autoimmune for the first one, inflammation for the 2nd one, possible Lyme for the 3rd, and I think the 4th would go along with the first.

But hopefully one of the brainiacs will be along shortly to give a much better answer to your question.

 

[Pyrrhus]

Anti-nuclear antibodies (ANA) is a test that can hint at autoimmunity.
C-reactive protein (CRP) is a test that can hint at inflammation.
Erythrocyte sedimentation rate (ESR) is a test that can also hint at inflammation.

People with ME typically test low/negative to these, but a high/positive result on any of these would not rule out ME.

(cross-posted with Judee! )

 

[RyeRyeBread]

Thank you to both of you!!

I'm hoping whatever rheumatologist i end up seeing after will see those results and, if indicating anything, won't immediately disregard ME (I have a fear of that LoL). I'm also kind of hoping these tests show something so that there is physical "evidence" of something wrong


We shall see!

 

[Judee]

He might call it Fibromyalgia and try to prescribe something. Just be aware and prepared in case. Have him check your vitamin D levels for sure. Those levels tend to be low in a lot of us.

Also research Cymbalta and Lyrica ahead of time. I think those are their main go-to's for Fibro.

Askapatient.com
Drugs.com

Also if he does bring it up, you could mention this test: https://www.fmtest.com/about-fma/ (They have a brochure you can print out to show him.)

Mine poo-poo'd it, but another member that I haven't seen on here for a while, said that testing positive on that test helped her SSDI case.

I hope nothing I just posted will discourage you and that your appointment will go as you are wanting it to. Let us know how it goes if you can.

 

[RyeRyeBread]

He might call it Fibromyalgia and try to prescribe something. Just be aware and prepared in case. Have him check your vitamin D levels for sure. Those levels tend to be low in a lot of us.

Also research Cymbalta and Lyrica ahead of time. I think those are their main go-to's for Fibro.

Askapatient.com
Drugs.com

Also if he does bring it up, you could mention this test: https://www.fmtest.com/about-fma/ (They have a brochure you can print out to show him.)

Mine poo-poo'd it, but another member that I haven't seen on here for a while, said that testing positive on that test helped her SSDI case.

I hope nothing I just posted will discourage you and that your appointment will go as you are wanting it to. Let us know how it goes if you can.

Thank you! Yeah i was worried that might happen. I wouldn't mind too heavily if they continued verifying ME, but if they stop there and don't look further- ergh

No worries, no discouragement here! Quite the opposite, I feel more empowered when informed of the many possibilities, thank you

 

[RyeRyeBread]

*Update*
Everything was negative/normal lol
no big surprise there, but I was hoping for something to show
At least we've mostly ruled out lyme?
Onwards!!

 

[Judee]

At least we've mostly ruled out lyme?

Did it show any of the bands?

 

[halcyon]

If what I'm dealing with is in fact ME, what results can I suspect from these tests, if any?

Would any result from these "rule out" ME?

None of these tests have ever really showed consistent abnormalities in this disease, with the possible exception of ESR, which can often run "abnormally" low at 0-3mm/hr (this is within the normal range, however it's unusual for people with such a debilitating immune-related disease to have such a low result, but it's a very indirect marker that can be influenced by many things).

In terms of routine/slightly less routine lab tests that can be abnormal in this disease (but don't have to be), potassium is often found to be low (often enough that it statistically shows up in research) as well as phosphate, there can be a mild/intermittent eosinophilia, and the CD4/CD8 lymphocyte ratio/counts can be abnormal (starting off in one direction, then flipping the other direction over some period of time). IgG subclasses can be abnormal (I've seen 1, 3, and 4 mentioned). Viral serologies for herpesviruses or enteroviruses can often be abnormal, the latter being more difficult to obtain the right testing for. Personally I've also had elevated prolactin and elevated LDL cholesterol, though I don't know how common these are.

 

[CSMLSM]

Anti-nuclear antibodies (ANA) is a test that can hint at autoimmunity.
C-reactive protein (CRP) is a test that can hint at inflammation.
Erythrocyte sedimentation rate (ESR) is a test that can also hint at inflammation.

People with ME typically test low/negative to these, but a high/positive result on any of these would not rule out ME.

(cross-posted with Judee! )

Sedimentation rate could be used as a non-specific B12/Folate test. To see if further testing would be appropriate. Whether or not this is the intention here I do not know.

C-reactive protein from what I remember was always super low for me. Comments were made, well the C-reactive protien is low that means you do not have inflammation in your body.

I could cry with laughter right now if im not careful. Doctors lol

Daniel

 

[Pyrrhus]

Personally I've also had elevated prolactin and elevated LDL cholesterol, though I don't know how common these are.

I know of only one study that found elevated LDL cholesterol:

Evaluating Routine Blood Tests According to Clinical Symptoms and Diagnostic Criteria in Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
(Baklund et al., 2021)
https://forums.phoenixrising.me/thr...gnosis-and-treatment-2021.84269/#post-2354112


And for anyone else with high prolactin, there is this discussion:

High prolactin
https://forums.phoenixrising.me/threads/high-prolactin.61624/

 

[RyeRyeBread]

Did it show any of the bands?

I'm not sure, the results i was able to see just gave simple negatives/positives 😕 the doctor who ordered them didn't say anything more other than that they came back normal/not showing anything 🤷‍♂️

I'm going to see a rheumatologist soon so if they suspect anything in that direction I'm sure more tests will be done

 

[heapsreal]

The issue with blood work is there's nothing specific to say you have cfsme. But there are plenty of abnormalities that can be picked up but also not lead to a specific diagnosis.

Certain blood test abnormalities can be good to track and a certain pattern may lead to a diagnosis.

My current GP for last 5 years helps monitoring general health things as well as cfs symptom management but he was initially very hesitant about the whole cfs issue, probably leaning more towards it being depression. But with previous drs prescribing me antivirals as well as years of blood tests showing abnormalities T cell numbers and low neutrophil counts, plus the cfs study I was in that showed low nk function. All that has helped him to lean towards the cfsme being immune/infectious in my case and he has said to me that he knows very little about cfsme and is really being guided by what I say, to a certain degree. If I didn't have all the serial blood , it would be a different story.

 

[Judee]

I'm not sure, the results i was able to see just gave simple negatives/positives

Ah...I wish they would allow patients to see the breakdown.

If he's a decent doctor, you might ask him if he can look it up when your in his office. At least that way you could know what particular bands were positive, negative or indeterminate; even get a printout maybe.

Especially considering that you could technically have 4 positive bands showing some kind of exposure but still be considered CDC negative. It's just important to know especially if you are symptomatic and decide to follow up with an LLMD (Lyme Literate MD) later on.

Of course, don't say all that to your doctor if he is more mainstream. They mostly disagree sharply with LLMD's and will roll their eyes at you.