Best place to get sensitive virus tests in Uk

[Ronagrenade2020]

I am working with an infectious disease specialist and so far I am negative for
Cytomegalovirus
Coxackie a and b
Enteroviruses(negative for numbered entorviruses)

Will be getting
HHV 6 HSV 1 and 2, EBV next week
Lyme
Parasites

My suspected primary infection is covid but I haven't made antibiodies which isn't uncommon for longhaulers and 3 doctors have diagnosed longcovid.

I am assuming the herpes viruses will throw up something and if high enough I can treat.

Are these tests sensitive enough? I get them all done through bupa at the top hospitals in London.

I am also trying to persuade an immunologist to run my cytokines and lymphocyte subgroups to look at NK cells and T cell counts as I hear that certain deficiencies are present in ME patients.

Plans aee
A) treat any high titers with antivirals
B) look at ivermectin or possible longcovid treatment
C) assess cytokines and see if fatigue producing, sickness behaviour inducing one's are raised and treat with supplements or drugs
D) support the regeneration and repair of damage done to the brain, nervous system and mitochondria
E) if th1 response or NK cells are low, look for treatments to strengthen th1 response

Anything I have missed?

 

[Hip]

I am working with an infectious disease specialist and so far I am negative for
Cytomegalovirus
Coxackie a and b
Enteroviruses(negative for numbered entorviruses)

Will be getting
HHV 6 HSV 1 and 2, EBV next week
Lyme
Parasites

For coxsackievirus B, it is only antibody test via the neutralization method which are sensitive enough to detect the chronic CVB infections often found in ME/CFS, according to Dr John Chia. If your CVB antibody test was by the CFT, ELISA or IFA methods, it will likely not be sensitive enough to detect an active CVB infection. So you have negative result, but could still have coxsackievirus B.

To my knowledge, we do not have any labs that offer antibody neutralization tests for CVB in the UK, but there are labs in Germany, Greece and the US which offer this. See the CVB and echovirus section of my roadmap document for details of these labs.

For cytomegalovirus, Dr Lerner says the IgG antibody test is required (IgM he says is not appropriate for ME/CFS). Do you know if your cytomegalovirus test was IgM or IgG?


Generally, infectious disease specialists interpret viral tests results in a different way to ME/CFS specialists. For example, if IgG is high but IgM is low, an ID specialist will say that is a past infection which is now dormant. But an ME/CFS specialist will view high IgG as evidence of active infection, and may then treat with antivirals or immune boosters.


The way IgM and IgG antibodies normally work in an infection is this:

During onset of acute viral infection, IgM antibody levels are acutely raised. As the infection is brought under control, these levels of IgM go down to zero, and at the same time, IgG antibodies comes into play. IgG antibodies against that particular virus will remain for the whole life of a person, or at least for a decade or two (except in the case of coronavirus, where we know antibodies can diminish rapidly after some months).

My suspected primary infection is covid but I haven't made antibiodies which isn't uncommon for longhaulers and 3 doctors have diagnosed longcovid.

Yes, unfortunately with coronavirus antibodies rapidly diminishing over time, it may be harder to get antibody evidence of being hit with coronavirus some months earlier.

Do you know if your antibody tests for coronavirus are IgM tests or IgG tests?

 

[Ronagrenade2020]

Thanks for the response Hip, I thought that might be the case.

I think the cytomegalovirus test was just "negative" and for some reason the PDF file from the doctor is now corrupted so I can't see for sure. The coxackie test was just IGM though.

Interestingly my immunoglobulin showed rasied IGM and IGA but high normal IgG, the notes said that they suspect some sort of pathogen still active but it was hard to say what, that's when I was referred to the ID specialist and I am getting those bloods done when I am well enough to travel to London (my step count envelope before PEM is currently quite low so will have to get a taxi or be driven)

Re coronavirus, I had the finger prick IgG test at 14 weeks in, I have heard of patients only getting positive results when the virus is cleared so potentially I could still be using IGM and IgG will appear later, I am skeptical of the accuracy of the current availabile testing and there is still an unanswered question of evidence of chronic viral Persistance.

I understand re the role of IgG, I can also see from. A chronic perspective that if tieters are high its probably worth treating.

Let's say for example my EBV and Hhv6 comes back high, would my immune system be able to use my immunoglobulins more efficiently for covid if they weren't using them to neutralise other viruses or does it not work like that?

Seoje mentioned IVIG treatment in Germany, would that have any therapeutic effect if my immunoglobulin is already rasied?

 

[Hip]

Re coronavirus, I had the finger prick IgG test at 14 weeks in, I have heard of patients only getting positive results when the virus is cleared so potentially I could still be using IGM and IgG will appear later, I am skeptical of the accuracy of the current availabile testing and there is still an unanswered question of evidence of chronic viral Persistance.

Yes, the sensitivity of these coronavirus tests for any persistent low-level infection that might exist in long COVID patients remains open to question.

Let's say for example my EBV and Hhv6 comes back high, would my immune system be able to use my immunoglobulins more efficiently for covid if they weren't using them to neutralise other viruses or does it not work like that?

It does not work like that: immunoglobulins (aka antibodies) are specific for each infectious pathogen. When you catch a pathogen, the immune system will "custom design" a new antibody which specifically targets that microbe (it takes a few days for the immune system to perform this custom design).

The immune system will then remember how to make that particular antibody for the rest of your life (or at least for decades), so that if you ever encounter the same pathogen again, you have an antibody which can immediately target it. This is why normally you do not catch the same pathogen twice.

So for example any antibodies you have that target EBV will be different to the antibodies which target cytomegalovirus.

Seoje mentioned IVIG treatment in Germany, would that have any therapeutic effect if my immunoglobulin is already rasied?

IVIG treatment works well for ME/CFS linked to active parvovirus B19, but for other viruses, its efficacy is less, and it only works for around 1 in 5 ME/CFS patients.

Here is some info:

Intravenous immunoglobulin (IVIG) and subcutaneous immunoglobulin (SCIG) has had mixed results, but can bring benefits (cost is around $25,000 for a course of treatment).

Dr Chia finds 20% or so of his ME/CFS patients respond to IVIG.1 He says for ME/CFS patients with severe pain, the pain will go away within 24 hours of an IVIG infusion (see this video at 3:33). Dr Chia says low-dose IVIG is often more effective than high-dose.1

A study found ME/CFS patients with low CD4 counts before treatment are more likely to do well on IVIG.1 2

More info: IVIG - MEpedia, IVIG and ME/CFS.

Source: ME/CFS roadmap.

 

[Ronagrenade2020]

Thank you for explaining.

I have noticed on one of the covid groups, drugs like abilify and LDN are helping covid patients with fatugue and brain for caused by inflammation, some have reported less PEM too which is positive.

Another drug that has cropped up is Mestinon.

Others have said using antihistamines for supposed MCAS closes the porous blood brain barrier in mast cells and reduces the amount of cytokines getting into the brain thus reducing overall fatigue?

Another curiousltu I have is a lot of folk are saying PVF takes 18 months to "heal" from and exertion is impeding the healing process? Is the nervous system damaged or is it simply due to the over production of cytokines post virus that keep pumping into the body creating this centralised inflamed, fatigued state?

 

[Hip]

I have noticed on one of the covid groups, drugs like abilify and LDN are helping covid patients with fatugue and brain for caused by inflammation, some have reported less PEM too which is positive.

Another drug that has cropped up is Mestinon.

Yes, these are all known ME/CFS treatments. But they don't work for everyone with ME/CFS: they will work for some people, but not others. This is the norm with ME/CFS patients. So usually it's just a case of trying as many ME/CFS treatments as possible, in order to find ones which work for you.

Others have said using antihistamines for supposed MCAS closes the porous blood brain barrier in mast cells and reduces the amount of cytokines getting into the brain thus reducing overall fatigue?

I've not come across that before. If you know of any studies which support this idea, I'd be interested.

Another curiousltu I have is a lot of folk are saying PVF takes 18 months to "heal" from and exertion is impeding the healing process? Is the nervous system damaged or is it simply due to the over production of cytokines post virus that keep pumping into the body creating this centralised inflamed, fatigued state?

Yes, post-viral fatigue can take up to around 18 months to recover from. If you don't recover by the 2 year point, the PVF has probably become ME/CFS. There's very little understanding of why some people recover from PVF, whereas others never recover, and they are then classed as ME/CFS patients.


For ME/CFS patients who are moderate or severe on the ME/CFS scale of: mild, moderate and severe, exercise can definitely make your illness worse, if you try to push yourself. For severe patients, even a 10 minute walk can be pushing it.

If you are mild, I would think exercise is more acceptable, but you'd probably still not want to overdo it.


There's usually not much in the way of nervous system damage in ME/CFS. It's not like multiple sclerosis, where there are observable lesions in the brain.

The cause of ME/CFS still remains a mystery to medical science; but there are theories, and certainly chronic low-level brain inflammation is one hypothesis. This inflammation may be due to the presence of a low-level viral infection in the brain (which has been observed in ME/CFS patient brain autopsies).


In the case of SARS-CoV-1, this is known to be able to infect the brainstem in both humans and animals. The brainstem is an area of the brain often implicated in ME/CFS. I've not seen any studies indicating that SARS-CoV-2 can infect the brain, but it's quite plausible that it's able to.

SARS-CoV-1 also caused an ME/CFS-like condition in humans, called chronic post-SARS syndrome.

A 2011 study found one year after their initial infection, 87% of Toronto patients with SARS-CoV-1 were still symptomatic, the symptoms being pain, reduced vitality, physical, mental, and social functioning. And 17% were still severe enough with chronic post-SARS syndrome that they had not returned to work.

A 2009 study found psychiatric morbidities and chronic fatigue persisted and continued to be clinically significant among the SARS-CoV-1 survivors at the 4-year follow-up.

 

[Ronagrenade2020]

Interesting that not being able to walk for 10 minutes is considered severe, I crashed after 3 days of walking and I'd say those walks were between 10 and 20 minutes each. Every time I try to start walking again after a few days I get a severe crash to original fatigue levels of virus and I have to stay in bed all day, I've been in bed all this week because of this. I have been this way from day 1 of the virus and I've never been able to get beyond 2k steps a day around the house and I still get brain fog from too much screen time.

I thought I was moderate, I am slightly concerned about being severe as I see people at that level seem to deteriorate or end up unable to look after themselves.

I am kinda hoping some of the neuro inflammation reducing drugs will help me, I also am kind of hoping that this may be post viral fatigue and I may get better.

I've seen some (not many) long haulers who were house /bed bound really improve quickly and are now put walking several thousand steps and increasing their PEM threshold.

Does starting severity play a role in potential recovery? Should I be concerned that I am severe compared to a lot of longcovid folk who can work, walk and are doing a lot better?

 

[Hip]

I thought I was moderate, I am slightly concerned about being severe as I see people at that level seem to deteriorate or end up unable to look after themselves.

I believe ME/CFS severity level is gauged on the basis of your normal days, rather than those days where you have been made worse due to PEM. So if on normal days you are out of bed during the day, but more-or-less housebound, except perhaps for a few excursions out of the house per week, then that would be moderate.

Severe ME/CFS is when you are in bed all night and most of the day, except for a few hours up and about around the house. Very severe is when you are in bed 24/7, except to go to the bathroom.

I am kinda hoping some of the neuro inflammation reducing drugs will help me, I also am kind of hoping that this may be post viral fatigue and I may get better.

That is certainly a possibility at this stage, that you might recover.

Does starting severity play a role in potential recovery? Should I be concerned that I am severe compared to a lot of longcovid folk who can work, walk and are doing a lot better?

In ME/CFS, everyone has their own level. On this forum you find people from very severe to mild.

I am not sure if severity level has a bearing on who recovers from post-viral fatigue; I've not seen any studies on this. And it's rare to get PVF patients on this forum, so I've not seen many anecdotes. The only PVF person I've come across, in my 11 years on this forum, was a guy who was bedbound with severe PVF, but he recovered (he credited his recovery to home mild hyperbaric oxygen therapy).

 

[Pyrrhus]

You have some great ideas for plans @Ronagrenade2020 and fortunately @Hip had some great input on those plans!

My suspected primary infection is covid but I haven't made antibiodies which isn't uncommon for longhaulers and 3 doctors have diagnosed longcovid.

Yeah, it seems some people don't develop antibodies to the novel coronavirus, which is obviously of great concern. If your body doesn't develop antibodies, then the viral infection can go on and on.

But it's great to hear that 3 doctors have diagnosed Long Covid- unfortunately, a lot of Long Covid patients struggle to get any helpful diagnosis.

I have heard of patients only getting positive results when the virus is cleared so potentially I could still be using IGM and IgG will appear later,

Fingers crossed!

I've not seen any studies indicating that SARS-CoV-2 can infect the brain, but it's quite plausible that it's able to.

This thread describes the studies that found brain infection with the novel coronavirus:
https://forums.phoenixrising.me/threads/neuroinflammation-in-long-covid.81396/