Thread by @exceedhergrasp1

My niece is Going Through It, & she agreed to use her suffering for educational purposes! So strap in, #NEISvoid & #MedTwitter for a #CaseStudy on "early ME" or "peri-onset ME".

This is what your patient may look like if they are developing ME but don't YET have PEM.

(1/19) 🧵

Recent history of sometimes overlapping infections you normally see in immunocompromised individuals.

Our pt (over ~3 mo):
~ COVID-19
~ MRSA (!)
~ Strep
~ Cutaneous infection - pathogen unclear. Ablation required.

(2/19)

Following lab values are often clinically low or borderline; in our case's case, borderline.
~MCV
~MCH
~MCHC
~B12

Together these indicate potential anemia. Check ferritin, iron, B6 as well. (3/19)

If iron or ferritin is low in post-viral/peri-onset ME folks, consider using lactoferrin in place of iron supplements or injections. Reasoning laid out here:

https://twitter.com/exceedhergrasp1/status/1466491046875918336

(4/19)

If B12 and folate are low (or low-normal), supplement. These are water-soluble vitamins and it's okay to supplement if doing so mitigates symptoms -- which at least one small study showed was the case, regardless of deficiency status. (5/19)
pubmed.ncbi.nlm.nih.gov/25902009/

Hypovitaminosis D, sometimes on the extreme low end, is common in post-viral, peri-onset pts.

It's out of range in our pt, low 20s. (6/19)

Here's one that needs some context: our pt's cholesterol, which has always been normal, is now high w/no change in diet: 255-mg/dL.

This is also common in peri-onset pts.

Less common (but we see it) is out-of-range low cholesterol: 140-mg/dL or thereabouts. (7/19)

High cholesterol should be seen as a warning: a sign of systemic, often cardiovascular, inflammation. The body makes more cholesterol during inflammation. (8/19) journals.sagepub.com/doi/full/10.11…

...LDL cholesterol is an anti-inflammatory agent. If you get inflammation down, you may well see a drop in cholesterol w/o the use of statins. Which we would want to avoid in this early 20s pt. (9/19) ncbi.nlm.nih.gov/pmc/articles/P…

WBCs in pt are overall high (11.1 k/uL); notable borderline-highs in neutrophils (7226 cells/uL), leukocytes (3053 cells/uL).

At least we don't see the hypo/hyperglycemia in this pt, which is common as well. (10/19) pubmed.ncbi.nlm.nih.gov/34686519/

We see TSH borderline low, and CO2 borderline low in our case study, which is also common. (11/19)

Now, apart from the cholesterol & perhaps the WBCs & Vit D (which UK folks generally scoff at supplementing), nothing else is in the 'alarm range'. So what's presentation like? (12/19)

Previously healthy 23YO ♀️ who has managed "slow onset" ME w/diet, exercise, multivitamins

~Profound OI
~Profound fatigue, brain fog
~Increasing food intolerances/allergies
~Carousel of new infections

Missing work, often. This is PERI-ONSET. She doesn't "have ME" yet. (13/19)

So, "peri-onset" pts present with:
~"Anemia of chronic illness" - low iron/ferritin/B12
~Low Vit D

Sometimes:
~High (or, less commonly, low) cholesterol/ triglycerides
~Low CO2, low TSH

When you see these patterns, include ME in your differential dx. And think Pacing. (14/19)

Early pts are often still able to exercise & feel better with it. Don't discourage them if they still feel good! But do educate re: keeping an eye out for the often-24-hr delay between overexertion & symptoms that would indicate PEM is now part of presentation. (15/19)

Even healthy folk can benefit from learning how to pace themselves, so there is no harm in educating on pacing early. Consider starting on supportive supplements, where applicable.
Pacing Guide: meaction.net/wp-content/upl… (16/19)

Remind them to rest/recover fully between infections before returning to work/school: taking the full time to feel back to their old selves and then a day or two 'extra' to reach full recovery. (17/19)

(I want people to think carefully about why her demographics and disease presentation went LAST. It matters.)

As always, I'm not a dr & this should not be taken as medical advice, despite "case study" format. (18/19)

I've just seen the same data in early pts so often that I feel it should be said what tends to be 'off' or 'borderline' in standard bloodwork.

Even standard bloodwork can help diagnose if you consider values as part of the whole picture, rather than isolated factoids. (19/19)

Oof! and of course WBCs are elevated around onset, almost always, from the repeated infectious hits. How could I have left that out? 😅

(As is often the case for these long threads, I now need a break on monitoring replies; but I'll be back down the road.)

(Oh, & if you've noted I'm less engaged lately, Twitter is only showing me some replies these days? May happen once you get a certain # of interactions.)

OOF. Just learned those WBC values are after… ready for this? Four weeks of abx.

Interested in why someone would have low cholesterol? Check this thread:

https://twitter.com/exceedhergrasp1/status/1553583018559713281