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 he already has - 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.)

 

[Jonathan Edwards]

Our questions to you:

Hi Marek,

I think this is basically a question of medical management and we have no information about why a blood draw is wanted so I don't think we can comment. But a large proportion of those tests look to be unlikely to be relevant other than in very unusual circumstances and certainly not worth repeating if done recently.

 

[bobbler]

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!

I have no expertise.

I was told with my blood tests that relate to iron and haematocrit/haemoglobin etc that they aren't done more regularly than every 3months because that's how long rbc's etc take to turnover (never fully know what is heuristic/storytelling simplified for 'the patient' of course). But those are done for my specific situation and the specialists requirements so that is specific to that context. Tricky thing is that if you are looking at measures where they will want those alongside (eg iron, ferritin) it can often feel like as a snapshot you might want to delay those to be done at the same time perhaps but I don't know enough to know how that works if this is the window timing useful for those etc. so it is probably worth checking with the person who would actually be reading them/wanting the tests done.

 

[bobbler]

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.

From a purely patient perspective I'd agree with your first para up to a point.

Everyone is different and so my situation might be unique and to be taken with a pinch of salt as I have my own complications to factor in that affect blood draw, but I've had a phlebotomy where - agreeing with the principle of 'all the rest of the stuff' is most of the exertion - I saved up a request from a GP to go with the ones my specialist was asking for (and maybe another one too) and didn't know until I handed it to the person drawing that the total would be 8 vials.

Even having drunk water before hand, downed a can of lemonade seconds before and then having to eventually drink water actually during one vein collapsed after about 4 vials and the rest of the test got hard (I won't go into details).

Since then I became a bit more fussy about asking someone who sends me a form/request for a blood test if an old one is recent enough to do for their purposes (the systems aren't as joined up as we think so they might not as that medic be able to eg see that there is one from 2months ago for that already if it is on a different part of the system as they all have different access, and if it is a GP but it was done at a hospital then they might go into a login to look at that, and maybe vice versa) and how often/when they need it by, rather than just adding it knowing I had to do a blood draw for something else soon anyway etc. to try and avoid the same situation.

I do agree that if refining the list it's worth talking to the medics who want them. Maybe is worth also asking if you know there is an old one that is recent enough, whether they can access it and that would be recent enough for their purposes just in case they didn't know it was already there etc. But obviously there might be all sorts of good reasons that they might have for saying they need it done at that time given the situation etc so I would not assume anything.

 

[Kitty]

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?

I'd say it depends what his doctors are testing for. There's no treatment for ME/CFS, so I'd be asking them how likely it is that blood tests would discover anything that would help improve it. If they're looking for something else, could it wait until he's less crashed?

If the doctors thinks the tests are urgent, fair enough. But if it is only a repeat of a routine screening, there's a risk of worsening your brother's crash for no good reason. Doctors unfamiliar with severe ME/CFS don't always realise how little it takes.