What blood tests would you get?

Joan

Joan

Established Member (Voting Rights)
Im looking for some advice please.

If you had an opportunity to get specialist blood tests carried out what ones would you suggest? My young lad is 17, formally diagnosed with M.E. by Dr. Nigel Speight in 2014 but ill since 2012. As he moves forward into adulthood and into our adult health services (which are practically non existent where M.E. is concerned) Im wondering what blood tests would be useful to have done so that we can establish a current baseline of where things might be amiss in his system.

Im thinking here of viral testing, T cell testing, NK cells, immunological workup and whatever else you think would be useful to look at. The sky is the limit.... Lets pretend money is no object (we can all dream eh?)
 
Has he had all the basics looked at? Minerals, vitamins, looking for anaemia of various kinds, full blood count, liver function, kidney function, cortisol & DHEA levels, sex hormones, thyroid hormones (and I don't just mean TSH), thyroid antibodies, H. Pylori, parasites, gut dysbiosis.

Edit : Typo
 
great q. answers might be useful in the library or on mepedia. certainly cbc/cmp. maybe viruses?

in particular, i'd really like to know what constitutes a good and thorough immune and autoimmune workup. this drives me crazy.

i have been tested for [and positive for] anti-ds-dna, intrinsic factor, ana, igg subclasses [1 and 3 low]. but to my non-doctor self, it feels like stabbing in the dark, which i hope can be improved on to be more comprehensive. what would be logical?
 
Hello @Joan after 10 years with ME, I'm trying to work this out too. I've dragged my feet in pushing forward to get deeper testing which could lead to trying treatments that are out of the NHS type of box.

Definitely get him tested for everything @Arnie Pye listed, plus a comprehensive panel for Autoimmune diseases and tick bourne diseases, (not just Lyme, there's the Rickettsial infections, and more).

I'm thinking of seeing Professor Kenny de Meirleir in Belgium. Having testing done without a doctor to interpret them and suggest treatment seems a frustrating way to do things.

There is debate, over at Phoenix Rising, about whether his treatment approach is too incautious with antibiotics given too frequently, and that he sees too many patients to followup properly, but the general impression I get is people are satisfied - at least with getting thoroughly tested at last.

Treatment is individually tailored. My opinion is that his clinic looks like the best place to go in Europe to get an accurate picture of one's health. We are intelligent adults who can take or leave his advice and treatment plans, or get a second opinion on the treatment from another doctor if concerned.

I'm trying to find the comprehensive list of tests he orders, over at Phoenix Rising, but haven't got it yet.

He definitely tests for all of the above mentioned. NK cells, I think T cells too, (but not certain), a large range of viral, bacterial, and tick bourne infections, food intolerances, leaky gut...

From what I've read, Prof Meirleir does a cardiac test, a gut health microbiome test

@Justy and @Valentijn can you help with any info, please?
 
Arnie Pye said:
Has he had all the basics looked at? Minerals, vitamins, looking for anaemia of various kinds, full blood count, liver function, kidney function, cortisol & DHEA levels, sex hormones, thyroid hormones (and I don't just mean TSH), thyroid antibodies, H. Pylori, parasites, gut dysbiosis.

Edit : Typo
Click to expand...

Thanks a million for the response. He has had some of the basics but no minerals or vitamins as far as I know. He hasnt had cortisol or DHEA levels or thyroid hormones so thats good advice. They actually discovered last year he had H. Pylori while performing an endoscopy so he was treated for that. He has terrible gut problems so actually concentrating on the gut stuff is a good idea.
 
Samuel said:
great q. answers might be useful in the library or on mepedia. certainly cbc/cmp. maybe viruses?

in particular, i'd really like to know what constitutes a good and thorough immune and autoimmune workup. this drives me crazy.

i have been tested for [and positive for] anti-ds-dna, intrinsic factor, ana, igg subclasses [1 and 3 low]. but to my non-doctor self, it feels like stabbing in the dark, which i hope can be improved on to be more comprehensive. what would be logical?
Click to expand...

Thanks Samuel. He had some viral testing with Armin Labs and he has active CMV, HHV6, Coxsackie A and B viruses but yet has never been offered any anti virals here. Very frustrating. I might redo those tests as that was two years ago. And yes I fully agree - I would love to know what a thorough autoimmune workup looks like! I imagine starting with the ANA would be useful and Im guessing further testing all depends on symptoms? Maybe @Jonathan Edwards has some advice here?

By the way I thought Anti dsDNA was very specific for Lupus? I have lupus and have those antibodies in fairly high numbers (though they have reduced since being on treatment). I also have anti Ro antibodies and a high ANA which started my own journey of diagnosis with Lupus. I think the extractable nuclear panel might be a good idea now that I think about it. It tests for a number of different antibodies
 
Squeezy said:
Hello @Joan after 10 years with ME, I'm trying to work this out too. I've dragged my feet in pushing forward to get deeper testing which could lead to trying treatments that are out of the NHS type of box.

Definitely get him tested for everything @Arnie Pye listed, plus a comprehensive panel for Autoimmune diseases and tick bourne diseases, (not just Lyme, there's the Rickettsial infections, and more).

I'm thinking of seeing Professor Kenny de Meirleir in Belgium. Having testing done without a doctor to interpret them and suggest treatment seems a frustrating way to do things.

There is debate, over at Phoenix Rising, about whether his treatment approach is too incautious with antibiotics given too frequently, and that he sees too many patients to followup properly, but the general impression I get is people are satisfied - at least with getting thoroughly tested at last.

Treatment is individually tailored. My opinion is that his clinic looks like the best place to go in Europe to get an accurate picture of one's health. We are intelligent adults who can take or leave his advice and treatment plans, or get a second opinion on the treatment from another doctor if concerned.

I'm trying to find the comprehensive list of tests he orders, over at Phoenix Rising, but haven't got it yet.

He definitely tests for all of the above mentioned. NK cells, I think T cells too, (but not certain), a large range of viral, bacterial, and tick bourne infections, food intolerances, leaky gut...

From what I've read, Prof Meirleir does a cardiac test, a gut health microbiome test

@Justy and @Valentijn can you help with any info, please?
Click to expand...

Thanks for the reply Squeezy. He got tested for tick borne stuff with Armin and it was all negative. He got his NK cells tested as well and they were very low. He's been on Multi Messenger since to bring these back up and I'd love to see if they have worked (he is feeling somewhat better than he was so maybe they've helped). Im actually interested in food intolerances as well as he vomits regularly although its hard to see any specific pattern to it. Im sure though that certain foods are playing a part in it. Thanks again. If you find out any more info I really would appreciate hearing from you
 
@Squeezy - sorry im too unwell to reply right now, other than to say my expereince of his testing is good. some treatments are very cheap at clinic (IV abx etc), but he does not have enough time to spend with patients so care can be patchy. Ive met a lot of people at the clinic very happy with treatment and doing well.
 
Joan said:
Im looking for some advice please.

If you had an opportunity to get specialist blood tests carried out what ones would you suggest?
Im thinking here of viral testing, T cell testing, NK cells, immunological workup and whatever else you think would be useful to look at. The sky is the limit.... Lets pretend money is no object (we can all dream eh?)
Click to expand...

Dear Joan,
There is no point in getting immunological testing for ME because none of these things have held up as being abnormal in ME. Immune testing may be relevant if there are specific clues pointing to other conditions, but not based on typical features of ME.

I would advise against making use of labs like Armin and Red. There is no reason to think they have anything to offer not provided by a good university hospital lab. And I am increasingly convinced that physicians using these labs are providing phoney medicine.

Actually have some reliable scientific evidence.
 
Joan said:
Thanks Samuel. He had some viral testing with Armin Labs and he has active CMV, HHV6, Coxsackie A and B viruses but yet has never been offered any anti virals here. Very frustrating. I might redo those tests as that was two years ago. And yes I fully agree - I would love to know what a thorough autoimmune workup looks like! I imagine starting with the ANA would be useful and Im guessing further testing all depends on symptoms? Maybe @Jonathan Edwards has some advice here?

By the way I thought Anti dsDNA was very specific for Lupus? I have lupus and have those antibodies in fairly high numbers (though they have reduced since being on treatment). I also have anti Ro antibodies and a high ANA which started my own journey of diagnosis with Lupus. I think the extractable nuclear panel might be a good idea now that I think about it. It tests for a number of different antibodies
Click to expand...

Those viral tests mean nothing.

An ANA is always a reasonable thing to check with unexplained illness but any competent rheumatologist can judge whether lupus is even remotely unlikely based on clinical findings and basic blood count and chemistry. I actually think it is a wild goose chase trying to get tests done unless through a competent doctor.
 
What tests, would you suggest Dr Edwards? Are there any treatments you would suggest? I no longer know what to do.
 
Joan said:
Im looking for some advice please.

If you had an opportunity to get specialist blood tests carried out what ones would you suggest? My young lad is 17, formally diagnosed with M.E. by Dr. Nigel Speight in 2014 but ill since 2012. As he moves forward into adulthood and into our adult health services (which are practically non existent where M.E. is concerned) Im wondering what blood tests would be useful to have done so that we can establish a current baseline of where things might be amiss in his system.

Im thinking here of viral testing, T cell testing, NK cells, immunological workup and whatever else you think would be useful to look at. The sky is the limit.... Lets pretend money is no object (we can all dream eh?)
Click to expand...

I'd not go for a blood test but maybe something else like a Tilt Table Test for POTS if he has any signs of dizziness or fainting that could be related.

The reason is that none of my ME blood tests done privately are taken seriously by NHS doctors or the benefits people. My TTT Pots test however was enough to get a blue badge for parking without having to go through the normal no-and-appeal process. For PIP it was also taken seriously.

Other alternatives would be the 2 day exercise test if you could cope with (and if you can find someone to do it) that or Dr Myhill's Mitochondrial Function Profile. Certainly Dr Myhill's test is one I've heard of people using for benefit assessments.
 
The blood test I would want doesn't currently exist, as stated above, at least in the UK nothing else is considered as evidence of anything, so unless it's for personal information, that potentially leads to some form of treatment.......
 
V
Inara said:
@Jonathan Edwards
Why is that? (If this was answered elsewhere, maybe you would be willing to link to it?)
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Viral antibody levels rise after an acute infection and then may stay high life long. High levels just indicate a past infection. Some tests like IgM titres may point towards recent infection but not ver reliably. It seems that these tests have been over interpreted by 'ME physicians' in the past.
 
Not quite accurate. High levels MAY just indicate a past infection, but not necessarily.

In a natural explanation, elevated IgG values may simply suggest a past infection or exposure. However, there may be a more fundamental or common sense alternative. Some believe high IgG levels may suggest current infections - as evidenced by sero-positive Lyme patients.

It is actually normal to go from IgM positive to IgG positive for continued infection.

It blows me away how clinicians forget this.
 
We are talking about viruses. And the whole point is that yes high levels may just indicate past infection- so they provide no discrimination and are useless. The fact that it is theoretically possible that tests might have meant something else is irrelevant if in reality they have turned out to be unhelpful. We are interested in reality, not speculations sold to unwitting patients by physicians either out to make a living or maybe just as gullible about popular science as some patients may be.

In the past a number of ME physicians have used high viral titres to justify using antiviral but without any reliable evidence of benefit. I personally think it is time we took a more scientific approach. We now have three or for more groups recently failing to find any evidence of ongoing viral infection in ME.
 
Jonathan Edwards said:
We now have three or for more groups recently failing to find any evidence of ongoing viral infection in ME.
Click to expand...

I have read this too, and trust these researchers to know what they are doing.

Would it be possible that there could be, for example, ongoing viral infection in brain or other tissue that is not detectable by tests done by these researchers?

And is it possible that when some people with ME find they seem to improve on antivirals, it might be some other biochemical/physiological effect of the drug that is helping, unrelated to its antiviral properties?
 
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