IVIG UK

[Inez]

Hi, does anyone know if there is anywhere in the UK that offers IVIG privately? I'm looking to try it out as a POTS treatment which seems to be autoimmune in my case. It seems it is only offered on the NHS for immune deficiency and, whilst I know i'm immune deficient (low white blood cells and NK cells), it isn't recognised by NHS doctors as being 'deficient enough'.

 

[Learner1]

Hi, does anyone know if there is anywhere in the UK that offers IVIG privately? I'm looking to try it out as a POTS treatment which seems to be autoimmune in my case. It seems it is only offered on the NHS for immune deficiency and, whilst I know i'm immune deficient (low white blood cells and NK cells), it isn't recognised by NHS doctors as being 'deficient enough'.

The Immunodeficiency Foundation (IDF) might be able to help you. It is for people with primary immunodeficiencies, but they at least could help you understand where the resources are near you.

Have you done the Cell Trend test for pots antibodies? This would help you to determine if it's autoimmune. Some people have thiamin deficiency which can create pots as well.

And, have you tried pyridostigmine, Huperzine A, beta blockers, fludricortisone, or saline, as appropriate?

You might find the attached useful

 

[minimus]

I have a chronically low white blood cell count too. As is the case in the UK, you won’t be diagnosed as immune deficient and in need of replacement antibodies through IVIG based on a low WBC count alone.

Usually, your blood work has to show abnormally low levels of immunoglobulin production. If your immunoglobulin levels are within the normal range, you need to exhibit deficient antibody production in response to a provocative vaccine (e.g. the Pneumovax vaccine), as well as frequent use of antibiotics as evidence that you are prone to opportunistic infections.

Bottom line is that you probably will need to get more blood work done before a specialist will prescribe IVIG for immune deficiency. Also, keep in mind that IVIG dosing is lower for immune deficiency (usually 0.4 grams per kg of body weight) than it is for autoimmune and neurological illness like POTS (typically 1.2-1.5 grams per kg of body weight per month).

But good luck - IVIG does seem to help some POTS patients.

 

[Inez]

The Immunodeficiency Foundation (IDF) might be able to help you. It is for people with primary immunodeficiencies, but they at least could help you understand where the resources are near you.

Have you done the Cell Trend test for pots antibodies? This would help you to determine if it's autoimmune. Some people have thiamin deficiency which can create pots as well.

And, have you tried pyridostigmine, Huperzine A, beta blockers, fludricortisone, or saline, as appropriate?

You might find the attached useful

Thanks Learner1 I'll look into the Immunodeficiency Foundation but from what I can see they are based in US.

I have been considering doing the Cell Trend test. However, today this lecture suggests 90% of POTS patients have at least A1 adrenergic autoantibodies so I am assuming I do. Plus my symptoms are hyperadrenergic which tends to be autoimmunme. Its interesting that he says auto antibodies can be controlled by controlling inflammation in the innate immune system, including mast cells. I have MCAS too. This might finally explain the link between the two syndromes -MCAS comes first so treating that might bring me some relief.

 

[Inez]

I have a chronically low white blood cell count too. As is the case in the UK, you won’t be diagnosed as immune deficient and in need of replacement antibodies through IVIG based on a low WBC count alone.

Usually, your blood work has to show abnormally low levels of immunoglobulin production. If your immunoglobulin levels are within the normal range, you need to exhibit deficient antibody production in response to a provocative vaccine (e.g. the Pneumovax vaccine), as well as frequent use of antibiotics as evidence that you are prone to opportunistic infections.

Bottom line is that you probably will need to get more blood work done before a specialist will prescribe IVIG for immune deficiency. Also, keep in mind that IVIG dosing is lower for immune deficiency (usually 0.4 grams per kg of body weight) than it is for autoimmune and neurological illness like POTS (typically 1.2-1.5 grams per kg of body weight per month).

But good luck - IVIG does seem to help some POTS patients.

Thank you that's helpful. I'm on a load of antibiotics for lyme and bartonella but considering NICE don't recognise these as being persistent I don't think I've much hope there. I will keep searching for something private

 

[Learner1]

Thanks Learner1 I'll look into the Immunodeficiency Foundation but from what I can see they are based in US.

They may know of UK resources.

I have been considering doing the Cell Trend test. However, today this lecture suggests 90% of POTS patients have at least A1 adrenergic autoantibodies so I am assuming I do. Plus my symptoms are hyperadrenergic which tends to be autoimmunme. Its interesting that he says auto antibodies can be controlled by controlling inflammation in the innate immune system, including mast cells. I have MCAS too. This might finally explain the link between the two syndromes -MCAS comes first so treating that might bring me some relief.

Mast cell activation is usually treated by H1 and H2 antihistamines and mast cell stabilizers such as quercetin, curcumin, and Neuroprotek. Mast cell activation can be triggered by infections, oxaluria caused by antibiotic use, mycotoxins, iron overload, other toxicity, and genetics. Working in it can help but it won't cure POTS.

Yes, adrenergic and muscarinic antibodies cause POTS. Most patients do have them. I was suggesting you get tested because it would show doctors you have autoimmunity, and possibly help you get IVIG.

Thiamine deficiency can also contribute to dysautonomia so worth checking your level.