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/