Many types of immunodeficiency

[Treeman]

I'd love to know their political affiliation but I guess it's the personality of the person that is all that counts.

Rachel Maskell MP, she's been very supportive of ME/CFS patients. Homepage | Rachael Maskell MP - Rachael Maskell - Labour and Co-operative MP for York Central

Treeman there were some typos in your sentence about vaccine challenge

Sorry for my typos, I'm dyslexic, then add in brain fog, it's a bad and challenging situation. It takes me a life time to type and read.

The vaccine I had was Menitorix. On the net it says Menoitox is, "a vaccine that can be given to children after the age of 2 months up to 2 years to prevent infectious diseases caused by Haemophilus influenzae type b (Hib) and Neisseria meningitidis group C (MenC) bacteria."

I believe it's a standard test to see if the immune system mounts a response.

Thanks for you kind words, back at you.

 

[godlovesatrier]

Hey,

I'm dyslexic too! Although I think I must have got most of the typos out of me by writing 5 novels...between the ages of 16 and 24. Anywho from one dyslexic to another no apology needed! ME does make it worse. Totally agree.

Thanks for that. I wonder if they test antibodies then or just give you the vaccine and see how you fair with it.

Go figure she's a labour MP. Ok thanks for the link might contact her.

 

[Treeman]

Thanks for that. I wonder if they test antibodies then or just give you the vaccine and see how you fair with it.

Immunology tested me. I tested positive for ANA and TPO antibodies

 

[Learner1]

. He said my IGg would have to be around 4 (the reference range here is, 6-16, mine is around 5.1). He also said that I hade strong vaccine response.

The range here is 7-16. I qualified with a value of 5.7. 5.1 is not normal, around 11-13 is.

I have some blood tests coming up to retest my immunoglobulin levels

Good plan. It might be wise to also do PCRs for herpes viruses like Epstein-Barr, HHV6 or 7, cytomegalovirus, etc.

And, were the subclasses measured? IgG subclasses 1 through 4?

I once again explained my personal circumstances, my wife has long covid/severe ME/CFS and spends most of the day in bed. And my fatigue was disabling (I'm severe) and I also spend most of the day in bed. We have a 12 year old whose going through some challenging changes and we just cant help her and she needs it. He appeared to just switch off....

I'm sorry you are in this circumstance and that the doctor wasn't empathetic. What is the matter with these people? Can you find a new doctor? It definitely sounds like you need help.

I still have a few options up my sleeve, but to be honest I don't think they will improve my chances. The NHS is in disarray. My story is just one of thousands of failings by the NHS.

Be persistent. You deserve to get help and it sounds like you do need the immunoglobulins. Or perhaps you have some infections dragging your immunoglobulin level down that need treating.

The NHS is failing everyone but the situation for us is different because they don't provide any treatment for ME/CFS patients. We are denied medical treatment even for things we have and can be treated, that isn't the types of failure everyone else is experiencing.

The problem with the diagnosis of ME/CFS is that there's no treatment. I find the other 15 ICD10 codes to be far more useful in getting help.

If a patient with ME/CFS had a broken leg, they wouldn't set it? If this patient were in atrial fibrillation, they wouldn't treat it? If this patient had appendicitis, they'd do nothing?

 

[Learner1]

Immunology tested me. I tested positive for ANA and TPO antibodies

So, did they look at TSH, Free T3, Free T4 and reverse T3? Did they suggest trying Cytomel?

What will they do about the ANA? Will they look further for other antibodies?

 

[Treeman]

It might be wise to also do PCRs for herpes viruses like Epstein-Barr, HHV6 or 7, cytomegalovirus, etc.

And, were the subclasses measured? IgG subclasses 1 through 4?

I have EBV, VZV and they tested and said negative for, CMV, HHV7, HHV8, Entrovirus, Coxsackie B

No they don't measure sub classes within the NHS.

So, did they look at TSH, Free T3, Free T4 and reverse T3? Did they suggest trying Cytomel?

Yeah, all ok

What will they do about the ANA? Will they look further for other antibodies?

They did "a panel" of anti bodies, they are going to tell my what they are. Monitor the ANA and TPO anti bodies at this stage.

 

[wastwater]

Someone in my rare genes group mentioned they have this
In the video Fibromyalgia is mentioned

 

[wastwater]

Can IGM deficiency be easily tested for and is it something you are born with

 

[Osaca]

Someone in my rare genes group mentioned they have this
In the video Fibromyalgia is mentioned

Interesting, possibly also links with Prusty's low nIgM "findings". Would be interesting to know what exact tests she had done and what the proposed future treatments are.

 

[wastwater]

Is IGM like the virus early detection system,I guess if it is low by the time you mount a response you will be royally infected.
Is this routinely measured in the UK

 

[pamojja]

In the US, my insurance runs $15,000 per year, then I have an out of pocket maximum for things they will cover of $6,500. So, $21,500 plus spending for anything my insurance thinks is "experimental" or "not medically necessary."

What a contrast! Earn now about €24.000,- brutto a year for a part-time job (60%). For obligatory healthcare (I use for regular blood-testing only, since I abhor pharmaceuticals and invasive interventions) and social-security 4300,- is automatically subtracted from monthly salary, along with upto 700,- taxes/year. Leaves around 19.000,- netto a year.

I shouldn't complain about my high natural supplements costs of about 6.000,-, which along with life-style changes where responsible for my remissions, or as much a year for my rent..

 

[Treeman]

Can IGM deficiency be easily tested for and is it something you are born with

Yes it can be easily tested. Immunologist can do it. Here in the UK it can be done by a GP if you ask.

It can be something your born with or can develop it as you grow.

Is IGM like the virus early detection system.
Is this routinely measured in the UK

I don't think so.

In the UK it's not routinely tested.

 

[Osaca]

Yes it can be easily tested. Immunologist can do it. Here in the UK it can be done by a GP if you ask.

It can be something your born with or can develop it as you grow.

I don't think so.

In the UK it's not routinely tested.

Your total IgM levels can be tested quite standardly, but I would assume that isn't entirely what this woman is talking about here or is it (since she describes how long it took for them to figure it out and how the immunologist had to do extra tests)? Perhaps some people also look at different subclasses of IgM or is that wrong?

 

[Treeman]

Perhaps some people also look at different subclasses of IgM or is that wrong?

That can be done, but in the UK with the NHS, they don't do it.

 

[wastwater]

It was an IGA deficiency suspected in my rare genetic group but IGM seems to be relevant as well maybe there was a paper mentioning both