Mentally dealing with Hypogammaglobulinemia (a rare Common Variable Immunodeficiency (CVID))

This is rare (1 in 25,000 to 1 in 50,000 people) and there are no adult forums for this that I'm aware of yet. The two I found are mainly for parents whose children have this.

This is a whole body "under immune" condition that also comes along with autoimmune conditions at the same time.

https://www.ncbi.nlm.nih.gov/books/nbk563134/

https://en.wikipedia.org/wiki/common_variable_immunodeficiency

During lyme treatment my white blood cells tanked and so did my globulin's and total protein. Few Drs act on these findings - they don't know what it might be. Don't ignore it.

Immune cells are parts of our total proteins. I diagnosed myself with this five years ago by asking for certain tests from a functional MD after my CD-57 results never normalized. My guesses were correct. My sub classes of IgG and IgA are under the limits, as well as B-cells.

Ive been a problem solver my whole life, from health to vehicles, to athletic endurance events; i'm the guy that never gave up when others did. Im floored at how many "professionals" dont dig very deep in problem solving for their patience, and customers. Then we have to do it ourselves, unfortunately proving them wrong sometimes.

This is not something that is curable, only manageable at best once the symptoms start. The whole body can go wacko in the worse case scenario limiting life expectancy.

I finally feel I've finally met a wall, that I must keep climbing ... and 60 is approaching,....not what I expected from a life of "clean and athletic living". I did my best, but it wasn't good enough I guess. I'm doing OK for now with a few autoimmune conditions.

I realize this may sound very negative, but Im a realist. It is what it is.

Writing this cause I usually have an answer for everything, this has to many possibilities and unknowns.

In addition to treating individual issues, the only "wide range" treatment for this is IVIG once it reaches that point ( a matter of time I'm told). .

*****For those few that had IVIG this, what is the cost?**** (they cant do anything for low IgA)

Im just thinking out loud here. There are helpful people here. If you have and ideas or tips, Id appreciate it.

I have the ultra rare condition of isolated igM deficiency. It is so rare that most doctors dont even know it.

Its actually so rare scientists have Problems finding people to investigate.

So i would say I am In a similar boat except i dont get offered iV Therapy because Most doctors dont even know what it is

I am trying to get it since 3 months. If i am finally able, i can Post you about it.

Exactly! I'm trying to get the IVIG Product with IgM also! So far only 1 doctor said i have deficiency. By definition I also have:

My Level is around 30-33 with 40 being the lowest acceptable. 3 Doctors dismissed it and the 1 is to afraid to prescribe it but reasured me I am not mentaly ill - lol.

And also yes, dcd is right - as far as my doctor told me a IgG deficiency is even worse than an igM-def. I would seek for a insurance covering... I'm trying to get one aswell ....

in many spheres - often when one has reached a wall - its useful to question past assumptions and consider new possibilities.

so here are some questions that come to my mind for brainstorming purposes - just as an outsider looking in ( i think this is what you intended when posting so i hope its taken as intended)

what causes CVID ?

if the cause is genetic - i.e. driven by mutations - is it possible to test for those SNIPS and determine if they are indeed present
if the cause is not known - how do we know its not some acquired condition? - ie was fine until some thing happened in your life

if acquired - what might do that? - ( infections come to mind - we know lyme infects the germinal centres of the lymph nodes early in infection and disrupts the hosts ability to produce antibodies - as it is in the germinal centres that the handover from the innate immune system to the adaptive immune system happens and where it learns what antibodies to make)

and a follow up question would be - if acquired - and by infection - can it in fact recover when the infection is cleared - i suspect this may be possible as this area of the lymph nodes seem to be naturally very plastic in terms of adaptation during and after infections naturally rebuilding themselves.

in terms of testing such a possibility - i suspect infections testing is of limited benefit - as you have unusual immune markers - and testing in very long standing illness seems the least reliable -
but what about a therapeutic trial of something like a broad spectrum antimicrobial and maybe a biofilm, agent like xylitol - Dr J said almost every one of his high functioning lyme patients reported back strong symptoms flare when he put them on xylitol - so i think the majority of people with an occult infection would herx from that

if acquired - but not from infection - what is the explanation / mechanism for it being a progressive condition - ( i think your initial post indicates this is expected to worsen over time) - but if not from infection there needs to be some explanation for some other progressive process at work

overall, i am a bit wary of conventional diagnoses these days - when its evident there are not real world root causes known for the vast majority of chronic human conditions - and we get the "its just something that happens in some people, i am afraid you will just have to live with it" face saving explanation -
nature does not work like that - there are always reasons and mechanisms - "it just happens to some people" is really just code for "we do not know - but we don't like to admit that".

OK

hope its of some help!

Garzie said...
in many spheres - often when one has reached a wall - its useful to question past assumptions and consider new possibilities.

so here are some questions that come to my mind for brainstorming purposes - just as an outsider looking in ( i think this is what you intended when posting so i hope its taken as intended)

what causes CVID ?

if the cause is genetic - i.e. driven by mutations - is it possible to test for those SNIPS and determine if they are indeed present
if the cause is not known - how do we know its not some acquired condition? - ie was fine until some thing happened in your life

if acquired - what might do that? - ( infections come to mind - we know lyme infects the germinal centres of the lymph nodes early in infection and disrupts the hosts ability to produce antibodies - as it is in the germinal centres that the handover from the innate immune system to the adaptive immune system happens and where it learns what antibodies to make)

and a follow up question would be - if acquired - and by infection - can it in fact recover when the infection is cleared - i suspect this may be possible as this area of the lymph nodes seem to be naturally very plastic in terms of adaptation during and after infections naturally rebuilding themselves.

in terms of testing such a possibility - i suspect infections testing is of limited benefit - as you have unusual immune markers - and testing in very long standing illness seems the least reliable -
but what about a therapeutic trial of something like a broad spectrum antimicrobial and maybe a biofilm, agent like xylitol - Dr J said almost every one of his high functioning lyme patients reported back strong symptoms flare when he put them on xylitol - so i think the majority of people with an occult infection would herx from that

if acquired - but not from infection - what is the explanation / mechanism for it being a progressive condition - ( i think your initial post indicates this is expected to worsen over time) - but if not from infection there needs to be some explanation for some other progressive process at work

overall, i am a bit wary of conventional diagnoses these days - when its evident there are not real world root causes known for the vast majority of chronic human conditions - and we get the "its just something that happens in some people, i am afraid you will just have to live with it" face saving explanation -
nature does not work like that - there are always reasons and mechanisms - "it just happens to some people" is really just code for "we do not know - but we don't like to admit that".

OK

hope its of some help!

I need to look back again on yearly physicals that had Globulin, total protein (not all include these) and White blood cells count since those are the more common markers and "links" on regular tests in my case (and other people with this too). All those are obviously red flags once you know their relation. My regular Dr didnt even mention that immunoglobulins are in fact, parts of the total protein test values.

My past Lyme Dr hit the road...gone. Hoping to get an appt with a (new to me) functional MD who actually takes insurance. I lost my insurance coverage on my last one three years ago. I hope it goes well and she can help out with my new immune "investigation".

Yep, the immune clinic just said "we dont know why this happens" (as usual).

Post Edited (astroman) : 8/9/2023 11:43:39 AM (GMT-8)

Hmm...

"Fatigue Is Common in Immunoglobulin G Subclass Deficiency and Correlates With Inflammatory Response and Need for Immunoglobulin Replacement Therapy"

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc8785394/

And I re-charge with a nap after work almost daily. But ive been that way my whole life. It was worse with lyme or when my thyroid is off, but I see this can do that too.

saraeli said...
I have low immunoglobulin subclasses and low CD-57, but I don't know if any of the rest of this applies for me because I'm fairly sure I have not had the relevant tests. Doctors wave off the low subclasses because they say it's variable for people, even though my test results are always the same. What I do know is that even a cold will disable me for months at a time. My family and I live our lives as though I must avoid viruses at all costs, and it's honestly pretty awful in a world that doesn't value the medically vulnerable.

Yes, now I remember you mentioning this.

Are your subclasses low in range, or...under the range.

Finding a Dr who will test:

https://primaryimmune.org/about-primary-immunodeficiencies

remember many Drs now do tela/remote appts and will just send test orders to a hospital near you.

These most likely can be low too; WBC, total protein and globulin protein- youve prob had these done in the past

astroman said...


Let me know how it goes. As I previously mentions, my clinic must be a little behind the times, I was told there is nothing one can do for low IgM (Which I also have.). And they are one of the few immune clinics in my multi state region.Gees.....

Is Pentaglobin in IV form too? First I heard about it.

They always try to tell you that. It was true 15 years ago. Now we know that giving IVIG is actually helpful If the mixture contains igM.

Scholar medicine is very bad, old and everything is from 15 years ago. I hate it...

Here a Case Report https://www.ncbi.nlm.nih.gov/pmc/articles/pmc9634333/