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