Blood work optimization for severe ME/CFS & MCAS (bedridden 6 months)

[Marek Andrzej]

Hello everyone,

In the next few days, we are planning to have blood drawn for my brother (45 years old) and we want to cut down the list of lab values as much as possible to minimize physical stress on his body.

His current condition:
He suffers from severe ME/CFS (triggered by a jaw NICO surgery) and is currently in a massive, acute PEM crash. He has been completely bedridden for about 6 months, lacks all strength, and suffers from severe full-body burning and intense nerve pain. In addition, he is going through benzodiazepine withdrawal (stabilized on 0.1 mg Lorazepam) and there is a suspected MCAS (Mast Cell Activation Syndrome) with extreme CNS hypersensitivity.

His last blood draw was in September.

We have put together the following wishlist of lab parameters:

• Blood Count & Inflammation: Complete Blood Count (CBC), CRP, ESR
• Liver Function: GOT (AST), GPT (ALT), GGT, ALP, Bilirubin
• Kidney Function: Creatinine, eGFR, Urea, Creatinine Clearance
• Electrolytes & Minerals: Sodium, Potassium, Chloride, Calcium, Magnesium, Phosphate, Zinc, Selenium, Copper, Ceruloplasmin
• Iron & Proteins: Ferritin, Iron, Transferrin, Total Protein, Serum Protein Electrophoresis with Immunofixation
• Thyroid: TSH, fT3, fT4, TPO-Ab, Tg-Ab, TRAK
• Vitamins & Metabolism: Vitamin B1, B6 (P5P), B9 (Folate), B12, Holotranscobalamin, Methylmalonic Acid (MMA), Vitamin D (25-OH), HbA1c
• Viruses & Infections: EBV, CMV, HSV, VZV, Borrelia
• Special Values: Omega-3 Index (EPA/DHA), Coenzyme Q10, RANTES (CCL5)
• Heavy Metals (if suspected): Lead (whole blood), Mercury, Arsenic (urine with speciation)

Our questions to you:

1. Which of these values do you think are actually necessary again after only 2 months, and which ones can we safely omit for now given his current shock/crash state?
2. What should we pay special attention to during a home blood draw for such a bedridden, hypersensitive patient to avoid triggering another severe PEM crash?

Thank you so much for sharing your experiences and insights!

 

[SNT Gatchaman]

Hi Marek, I'm very sorry to read of your brother's severe suffering. I won't comment on any potential value or otherwise of the specific tests you listed, but from a practical point of view, drawing blood for one of those tests vs the whole list is probably not that different. Many of those lines would be done from a single vial, eg liver, kidney, electrolytes.

So likely there would be between 2 and say 5 vials depending, but it should be a single puncture and a vacu-tainer collection. So it comes down to whether he can tolerate a needle for 30 s vs say 90 s depending on how well the blood flows.

I would have thought that the major downside would be the activity preceding and the initial puncture itself, with holding for longer a lesser concern, but the degree of pain experienced may change your thinking. The ease of venous access and the blood draw will be partially dependent on how good his veins are on the day, so prior hydration via fluids is a possible modifying factor.

Otherwise, as with any visitor, quietly announced and gentle action on behalf of the nurse/technician will help: "slow is smooth and smooth is fast". They will need to be able to see what they're doing so eye protection is likely mandatory for your brother. However, I think I have seen videos of people shining a phone torch on the area, with the room otherwise relatively dark. Communication with the nurse/tech ahead of time so they are well informed will be the most help I think.

 

[Hutan]

Welcome to the forum Marek, thank you for caring about your brother.

Members can't know specifically about your brother or what test results you already have - and so are not in a position to recommend blood tests for him. In any case, that would be getting a bit close to our rule of 'no medical advice'.

But it is useful to think generally about this sort of situation
1. what blood tests are worth doing for a person with severe ME/CFS and how often is it worth repeating them?, and
2. how can the impact of blood draws on the person with severe ME/CFS be minimised?

 

[Hutan]

On CoQ10, a draft treatment evaluation here noted

It is not yet clear how useful blood tests are in determining if someone doesn’t have enough CoQ10, because CoQ10 is active in tissues. If someone has high levels of CoQ10 in their blood, it might just be because they have eaten CoQ10-rich food or because they have high levels of cholesterol (cholesterol carries CoQ10 in the blood). Reports have varied on whether there are differences in the level of CoQ10 in the blood of people with ME/CFS.

It might seem likely that if people do have a CoQ10 deficiency, then CoQ10 supplements are the answer. However, this approach has sometimes been found to be ‘disappointing’ even when it is known for sure that someone has a problem maintaining adequate CoQ10 in cells. Studies that have successfully increased levels of CoQ10 in the blood of people with ME/CFS have not been able to demonstrate health improvements. It might be that human biology largely relies on the CoQ10 the body produces, and not on nutritional sources, that is, from food and supplements.

It is possible that CoQ10 supplementation can help conditions other than ME/CFS, Long Covid and Gulf War Illness – we haven’t looked closely at the evidence for that. However, the USA government has not approved CoQ10 for any health or anti-disease effect and it does seem that the evidence for other benefits from CoQ10 supplements generally is weak.

That suggests that a blood test for CoQ10 levels is unlikely to be useful if a person has ME/CFS, partly because blood tests don't seem to be good at assessing levels in the tissues where they matter.

(I concluded in that evaluation that there was no good evidence to support the use of CoQ10 supplementation for the treatment of ME/CFS.)