Many types of immunodeficiency

[Learner1]

This recent YouTube video by the Immunodeficiency Foundation explains various types of immunodeficiency, testing for immunodeficiencies, genetic testing, and treatment.

The experts discuss acquired immune deficiencies, immunodeficiency without low immunoglobulins, immunosenesce, and different presentations of immunodeficiency.

 

[godlovesatrier]

Thanks I'll give this a watch.

 

[heapsreal]

Thanks, I've now put it on my list to watch👍

 

[godlovesatrier]

So I wonder if ebv and other viruses could cause a lack of igg or even the subclasses. Even at low replication levels.

I also wonder what effect antivirals might have on igg levels.

I really do think a lot of ME patients could be mis diagnosed and actually have PID or SID because it's so hard to diagnose anyway. I mean my GP did check but he didn't do subclasses. Thing is most GP's do NOT check. And igg and subclasses isn't enough to check this anyway.

I know Joan on the s4me forum has PID low igg subclasses. She started bactrim 4 years ago and went from very severe to remission within about 2 years. Obviously bactrim is broad spectrum with some nasty side effects. But for her that's worked to correct a lot of the issues that her doctors tell her is caused by PID. Yet she was diagnosed with ME for 12 years originally.

 

[Learner1]

So I wonder if ebv and other viruses could cause a lack of igg or even the subclasses. Even at low replication levels

Yes, I think so.

I also wonder what effect antivirals might have on igg levels.

Maybe so, though hard to tell if one is getting gammaglobulin replacement.

I really do think a lot of ME patients could be mis diagnosed and actually have PID or SID because it's so hard to diagnose anyway. I mean my GP did check but he didn't do subclasses. Thing is most GP's do NOT check. And igg and subclasses isn't enough to check this anyway.

There are a fair number of us with low immunoglobulins. And many of us of us that have had gammaglobulin replacement along with anti infectives have improved. However, many of us also have autoimmunity, so that needs to be treated too.

Given your history, your GP should be checking subclasses - one can have a barely adequate total IgG but be low in the subclasses that fight bacteria and viruses.

I know Joan on the s4me forum has PID low igg subclasses. She started bactrim 4 years ago and went from very severe to remission within about 2 years. Obviously bactrim is broad spectrum with some nasty side effects. But for her that's worked to correct a lot of the issues that her doctors tell her is caused by PID. Yet she was diagnosed with ME for 12 years originally

Obviously Joan had a chronic bacterial infection of Bactrim helped her. I'm allergic to it, it wouldn't help me. But treating the 5 active viruses I had with antivirals and 2 atypical pneumonias with a triple antibiotic (azithromycin, rifampin, doxycycline) combo given IV after oral abx failed, along with IVIG helped. Then dealing with the oxalate problem in my gut that the antibiotics gave me also helped. Wonder what's left in Joan's gut after all that Bactrim?

 

[godlovesatrier]

Suspect as soon as Joan cannot get any she will not only be back to her severe bedbound state but yes I suspect opportunistic pathogens would run her down. Not nice.

My GP out right refused to do subclasses after promising to do otherwise. It's become clear now that if you are in the UK you need private medical insurance. So I think I will be getting a policy for non ME issues. So yeah I would have to pay to get both done again. Cost £500 to me. Just spent £500 ruling out mycoplasma and asot.

At any rate I was in hospital for 8 hours yesterday getting myself checked over because my kidneys hadn't felt right. I had persistent right flank pain and ache (felt like someone had kicked me in both kidneys both sides) for about 4 days. But they did a CT and bloods and the only thing they find was a tiny stone in my kidney. Now I assume that's crystalluria from the valtrex. As I've never had or felt anything like that swelling/ache in my life.

Antivirals have worked well for me anyway. Haven't taken any for 5 days at present and fatigue levels on exertion appear to be much lower. Crashes at not as pronounced. Although I did crash after Easter and I'm still not sure what happened. Pollen maybe. Anyway they've helped a lot. So just goes to show.

 

[Learner1]

My GP out right refused to do subclasses after promising to do otherwise. It's become clear now that if you are in the UK you need private medical insurance. So I think I will be getting a policy for non ME issues. So yeah I would have to pay to get both done again. Cost £500 to me. Just spent £500 ruling out mycoplasma and asot.

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."

However, it's extremely costly to not know what the problem is and be trying to solve the wrong problem, so having good data is worth every penny.

I don't know if you can get tests from the German lab, Lab4More, but they have an extensive roster of helpful tests.

But they did a CT and bloods and the only thing they find was a tiny stone in my kidney. Now I assume that's crystalluria from the valtrex. As I've never had or felt anything like that swelling/ache in my life.

Have you looked into oxalates? See the thread I started on them...

Antivirals have worked well for me anyway.

Good for you!

 

[hapl808]

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."

Yep. Our system is inexcusably cruel. It's remarkable to me that we pretend that everyone has the same access to healthcare regardless of their financial situation - one of the many fictions Americans and their politicians perpetuate. If you're really financially restricted, then you're left with emergency room visits where you don't pay the bill and likely get minimal help, and then those with middle incomes and mediocre insurance still end up paying thousands for their ER care.

For one of the richest countries in history, the remarkable part isn't really that we've created a dystopian society where your health is literally tied to your paycheck, but that we've become complacent that it's the only way things can 'work' despite every other civilized country doing it differently.

 

[Learner1]

Yep. Our system is inexcusably cruel. It's remarkable to me that we pretend that everyone has the same access to healthcare regardless of their financial situation - one of the many fictions Americans and their politicians perpetuate. If you're really financially restricted, then you're left with emergency room visits where you don't pay the bill and likely get minimal help, and then those with middle incomes and mediocre insurance still end up paying thousands for their ER care.

For one of the richest countries in history, the remarkable part isn't really that we've created a dystopian society where your health is literally tied to your paycheck, but that we've become complacent that it's the only way things can 'work' despite every other civilized country doing it differently.

I agree. From a US perspective, it is very hard to understand people in other countries complaining if they have to pay for healthcare, because all we do is pay for healthcare - we pay for the right to have healthcare, we pay for the healthcare, and we pay the highest costs in the world. Not because we want to, but because that's the way big company lobbyists want it.

 

[wastwater]

Complement deficiency
https://en.m.wikipedia.org/wiki/Complement_deficiency

https://complement.org.uk/

 

[wastwater]

I do wonder if a viral liver injury is effecting immune complement levels leading to under reactive to bacteria (subtle) over reactive to virus
An aquired immunodeficiency of sorts

 

[Treeman]

I have been diagnosed with panhypogammglobulinamei. also had tpo and ana antibodies, but in the last 3 years the antibodies have disappeared.

I also wonder what effect antivirals might have on igg levels.

I've been taking acyclovir for around 3.5 years and my health and fatigue levels have improved in that time but my igG, IgM and IgA levels haven't improved.

However, many of us also have autoimmunity, so that needs to be treated too.

I understand that there are over 100 autoantibodies and they've probably only tested me for a handful. I feel it's possible that an undiagnosed antibody / antibodies are interfering with the production of energy.

From a US perspective, it is very hard to understand people in other countries complaining if they have to pay for healthcare, because all we do is pay for healthcare - we pay for the right to have healthcare, we pay for the healthcare, and we pay the highest costs in the world

I'm in the UK and we have the NHS. Its in deep trouble. They have 93,806 vacancies. The funding for the NHS has been cut for over 10 years and made it a place where its a very undesirable to work. We pay for it by taxes and those taxes are about to go up but the level of service is still going backwards. My last immunology appointment was a year ago and they said I would be seen within 6 months. Even in the UK, good health care is something for the very wealthy. We pay and still don't get the care we need. I need immuno therapy, but they wont give me it.

 

[Learner1]

. I need immuno therapy, but they wont give me it.

You might try joining the common variable immune deficiency FB group. UK patients there tell me there's no problem getting gammaglobulins in the UK. Maybe they can tell you how they do it. Or try contacting the Immune Deficiency Foundation, IDF. Maybe they can help advice you on how to get it.

 

[godlovesatrier]

Just in case anyone needs the info.

You can get immunoglobulins tested at medichecks without having to leave your house assuming you can get the blood out of your finger!

You can get subsets at doctors lab London or any available spire hospital via bluehorizon private blood tests. Just make sure that the hospital is actually accepting patients for blood draw. My closest one is 35 minutes away by car so I'm going to try and get that done in 2 or 3 weeks all being well.

As for immune function tests you can only really get a good set of immune cell tests for NK, t, b etc Inc func at doctors lab London. Blue horizon don't do the full panel which is extremely annoying. As a trip to London is just a huge problem even for me these days.

 

[Treeman]

You might try joining the common variable immune deficiency FB group. UK patients there tell me there's no problem getting gammaglobulins in the UK. Maybe they can tell you how they do it. Or try contacting the Immune Deficiency Foundation, IDF. Maybe they can help advice you on how to get it.

Hi, I followed your advice and also joined the FB group, Hypogammaglobulinemia: An Official IDF Facebook Group which was very useful. However it is as I thought it was, your life has to be, "under threat" to get immune therapy in the UK. I've spent the last 5 years mostly in bed, but the fact that I can't care for my family who desperately need me is meaningless to get the treatment.

 

[godlovesatrier]

I haven't got a hope in hell of getting it either.

We're pretty adrift for actual treatments in the UK.

 

[Learner1]

Hi, I followed your advice and also joined the FB group, Hypogammaglobulinemia: An Official IDF Facebook Group which was very useful. However it is as I thought it was, your life has to be, "under threat" to get immune therapy in the UK. I've spent the last 5 years mostly in bed, but the fact that I can't care for my family who desperately need me is meaningless to get the treatment.

That sounds pretty significant.
I don't know about that group. I belong to the Common Variable Immune Deficiency (CVID) group, where the UK patients claim it's plentiful. Perhaps the ICD10 code is the key. In any case, you might try contacting IDF directly and see what help/advice they can give.

Can you also talk to your elected officials?

 

[Treeman]

That sounds pretty significant.
I don't know about that group. I belong to the Common Variable Immune Deficiency (CVID) group, where the UK patients claim it's plentiful. Perhaps the ICD10 code is the key. In any case, you might try contacting IDF directly and see what help/advice they can give.

Can you also talk to your elected officials?

Hi, Thanks for your comments.

I contacted my local Member of Parliament (MP) who wrote to the CEO of the Hospital were I'm a patient. However, she did say she was not able to influence clinical decisions.

I had an appointment this Monday and the consultant immunologist said he didn't know anything about any communication from my MP. I felt dehumanised. I contacted the MP today and informed her.

I saw a consultant I'd not seen before and he was slightly more open then the others. 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.

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

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. These failings are in the press daily, and the NHS openly admit their failing. This has been caused by 12 years of government funding cuts and the pandemic. But, I'll only give up when I'm dead.

 

[BrightCandle]

This has been caused by 12 years of government funding cuts

In the case of ME/CFS it goes deeper than funding cuts, its systemic prejudice and its been driven by a cabal of Psychologists who have fabricated data for their treatments over decades. 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.

 

[godlovesatrier]

Good on you for going to your MP. I'd love to know their political affiliation but I guess it's the personality of the person that is all that counts.

Not sure who my new mp is but I may be in luck. Just moved house.

My GP refused to do immunglobulin tests she said my family gp had falsified the reasons for them. Something about him lying and said he suspected cancer. She said she wasn't comfortable with that. Sounded like bullshit to me if I'm honest. She had promised to do the tests after my prolactin had been checked. They love to blame the patient as well or disbelieve them.

In some good news I found out my GP has tested me for igf1. Which means I should be able to rule out growth hormone being low. But honestly doubt that's me. Good to rule these things out tho.

Im really sorry about your experience Treeman. I'm also very sorry you and your wife are so severe. That's just gruelling. My sympathies hugely even though I know it doesn't help.

I've been told Dr Bansal will do all the tests I need. I am hoping it only involves a trip to a local spire hospital.

Treeman there were some typos in your sentence about vaccine challenge. Would you be able to tell me more about exactly what they said? I'm intrigued because I respond really badly to vaccines. Always have. There's only one other type of event that does that - usually the intimate sort!

I'll pm you for more info I think. Thanks again.