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Holy crap -- IgM deficiency

Sea

Senior Member
Messages
1,286
Location
NSW Australia
Just what I was thinking -- why have a reference range if being outside it is meaningless? Have you tried taking the info to another doc to see if you can get treatment?

The doctor I have now is the most helpful of any I've seen and he is the one who ran the tests. I don't know anyone else to try.
 

SOC

Senior Member
Messages
7,849
The doctor I have now is the most helpful of any I've seen and he is the one who ran the tests. I don't know anyone else to try.

**Sigh** I guess the idea is that an IgA deficiency is not a problem if there are no symptoms. But with ME/CFS, it should be hard to say we have no symptoms, but docs still manage to do so. This sounds like another of those "healthy people do not have problems with ____ abnormality" stories. They keep forgetting we are not healthy people. Yeah, healthy people can have high EBV titres or low IgA numbers and still be healthy, but if we're sick, those those abnormalities probably mean something. :rolleyes:

If you've had lots of respiratory or gut infections, or UTIs, you might be able to push the issue with the doctor.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
**Sigh** I guess the idea is that an IgA deficiency is not a problem if there are no symptoms. But with ME/CFS, it should be hard to say we have no symptoms, but docs still manage to do so. This sounds like another of those "healthy people do not have problems with ____ abnormality" stories. They keep forgetting we are not healthy people. Yeah, healthy people can have high EBV titres or low IgA numbers and still be healthy, but if we're sick, those those abnormalities probably mean something. :rolleyes:

If you've had lots of respiratory or gut infections, or UTIs, you might be able to push the issue with the doctor.

Yep recurrent sinus, respiratory and ear infections. Almost deaf in one ear with sensorineural hearing loss which the specialist put down to "some virus" after he ruled out a tumour. It seems though that unless you're at death's door, needing urgent hospitalisation for these infections they don't count.
 

SOC

Senior Member
Messages
7,849
Yep recurrent sinus, respiratory and ear infections. Almost deaf in one ear with sensorineural hearing loss which the specialist put down to "some virus" after he ruled out a tumour. It seems though that unless you're at death's door, needing urgent hospitalisation for these infections they don't count.

Don't I know it! Years, decades actually, of recurrent sinus, respiratory, and ear infections and no doctor thought to check for immunoglobulin deficiencies. Sheesh!

My doc did suggest that I go back on Equilibrant when my recurrent respiratory infections came back. I was doing well on the low dose of only 1 pill daily (The usual dose is 6 pills daily). Might be worth a try for you.

I'll let you know what my doc says about my immunoglobulin tests.
 

Symptomatic

Senior Member
Messages
197
Still, it's a chicken or egg situation -- did some primary immune dysfunction allow persistent infections to then burn out other parts of the immune system, or did some infection cause the immune dysfunction in the first place?

This is the same question I've been asking myself, and my doctor. And of course the frustrating thing is that we don't have an answer...
 

SOC

Senior Member
Messages
7,849
Doctors seem to only want to treat lab results...in range, you're normal and out of range is meaningless. Tell me again why med school is 4 years?

I've been wondering the same thing lately. ;) In engineering we distinguish between technicians and engineers. The doctors I've been working with locally -- NOT my ME/CFS specialists -- act like technicians, not professionals. They are not problem-solvers. For the life of me, I cannot figure out why these people think they are worth so much more to society than most other people. A good 2-year technician degree would be enough to do what these docs are doing -- take some data, compare it to established norms, apply standard procedures.

Rant over.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I've been wondering the same thing lately. ;) In engineering we distinguish between technicians and engineers. The doctors I've been working with locally -- NOT my ME/CFS specialists -- act like technicians, not professionals. They are not problem-solvers. For the life of me, I cannot figure out why these people think they are worth so much more to society than most other people. A good 2-year technician degree would be enough to do what these docs are doing -- take some data, compare it to established norms, apply standard procedures.

Rant over.

Maybe all the extra time is spent learning to be condescending and developing the God complex.
 

SOC

Senior Member
Messages
7,849
Maybe all the extra time is spent learning to be condescending and developing the God complex.


:rofl: :rofl: :rofl: But of course! Here I was thinking they came by all that sense of superiority naturally, but it makes more sense that they had to put some serious training into developing arrogance to that level.

Let me be clear -- I believe there are some amazing, caring, thoughtful, hard-working, thinking doctors. There's just too many of the other kind.
 

xks201

Senior Member
Messages
740
IGA-G 570 (700-1600)
IGA-A 78 (91-414)
IGA-M 87 40-230

Are my results I just got back. I consult with a vet who has identified this syndrome and some of its causes in thousands of animals and now quite a few people. Basically he told me that as long as these IGA numbers are this low there is a high probability I'm not absorbing oral medication or supplements properly and need to switch to transdermals.

Pretty crazy. I have a very clear idea of my problem now.

I read somewhere that as long as these numbers are low, the total antibody numbers for food allergy testing like celiac can be unreliable. lol
 

SOC

Senior Member
Messages
7,849
IGA-G 570 (700-1600)
IGA-A 78 (91-414)
IGA-M 87 40-230

Are my results I just got back. I consult with a vet who has identified this syndrome and some of its causes in thousands of animals and now quite a few people. Basically he told me that as long as these IGA numbers are this low there is a high probability I'm not absorbing oral medication or supplements properly and need to switch to transdermals.

Pretty crazy. I have a very clear idea of my problem now.

I read somewhere that as long as these numbers are low, the total antibody numbers for food allergy testing like celiac can be unreliable. lol

So what is this syndrome that your vet o_O has identified? And what kinds of treatments does he consider?

I think I'm glad my IgA is normal.....
 

xks201

Senior Member
Messages
740
My vet says the igas in healthy people should be the top 50 pct of the reference range. These reference ranges are the averages of basically sick people getting their blood drawn. Reference ranges can lie. I have seen this multiple times in just about every hotmone blood test there is.

His protocol involves lowering estrogens in men and increasing free cortisol and free thyroid. He mostly uses synthetic corticosteroids to do this. When testing hormones you have to look at the free hormone levels...reverse t3....etc.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
IGA-G 570 (700-1600)
IGA-A 78 (91-414)
IGA-M 87 40-230

Are my results I just got back. I consult with a vet who has identified this syndrome and some of its causes in thousands of animals and now quite a few people. Basically he told me that as long as these IGA numbers are this low there is a high probability I'm not absorbing oral medication or supplements properly and need to switch to transdermals.

Pretty crazy. I have a very clear idea of my problem now.

I read somewhere that as long as these numbers are low, the total antibody numbers for food allergy testing like celiac can be unreliable. lol

Any idea how IgA affects absorption? I do have malabsorption and my doctor is aware that the tests for Celiac are unreliable with my low IgA, borderline IgG
 

xks201

Senior Member
Messages
740
Any idea how IgA affects absorption? I do have malabsorption and my doctor is aware that the tests for Celiac are unreliable with my low IgA, borderline IgG
I have been in communication with a vet named Dr. Plechner who says that his animals do not absorb medications orally when their IGA/IGG/IGM levels reach a certain low. He says that our reference ranges are artifically high, meaning that basically being in the bottom 30% of the reference range still means there is a deficiency. He says that basically since the immunoglobulins aren't functioning there will be inflammation and destruction of the villi causing malabsorption. I tried switching my meds to transdermals and this helps a lot. He basically puts his animals on injectable long acting glucococorticoids for adrenal replacement when needed when the IGxs are low. It seems to be a vicious cycle where cortisol gets low, and then the body makes excess estrogen which further blocks cortisol and T3 receptors. He has coined this syndrome Plechner's syndrome and it is probably going on in many chronically ill people. Also T4 trends to converting to reverse T3 in the above circumstance a lot of the time.

I didn't completely pick his brain on the subject but he seems to think that the immunoglobulins are necessary directly for absorption as well - telling me that even sublingual absorption would be impacted since IGxs are involved on all mucous membranes. I do notice a major increase in wellbeing when taking my meds and hormones transdermally instead of orally.

He is also big on the idea that even if hormones are showing good on blood results this doesn't mean they are being used properly. For example - most endos don't test free levels of hormones or the rev t3 to t3 ratio.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I've been wondering the same thing lately. ;) In engineering we distinguish between technicians and engineers. The doctors I've been working with locally -- NOT my ME/CFS specialists -- act like technicians, not professionals. They are not problem-solvers. For the life of me, I cannot figure out why these people think they are worth so much more to society than most other people. A good 2-year technician degree would be enough to do what these docs are doing -- take some data, compare it to established norms, apply standard procedures.

Rant over.

Yes! The same issue occurs in science, particularly with a modern emphasis on the cramming of technical knowledge into students over principles of problem solving.
 
I found this as I was just looking on Google again at IgM deficiency which I found I have last year, so haven't got my results to hand here but IgA and IgG were within normal range.

My ME/CFS turned out to be Lyme Disease and I have had long courses of antibiotics and made huge progress but when I stop antibiotics I slowly relapse but never anywhere near as bad as initially, this is common with chronic lyme disease anyway but I do think my IgM deficiency could be connected.

I have read that Dr Horowitz one of the best Lyme doctors in US finds IgM deficiency in a number of his patients - he says Lyme is the only disease he is aware of that this is found.

Another bit of information I found was that with Relapsing Fever Borrelia it is necessary to have a good IgM response to clear the infection.

Thought provoking but not a lot of help.
 

SOC

Senior Member
Messages
7,849
I found this as I was just looking on Google again at IgM deficiency which I found I have last year, so haven't got my results to hand here but IgA and IgG were within normal range.

My ME/CFS turned out to be Lyme Disease and I have had long courses of antibiotics and made huge progress but when I stop antibiotics I slowly relapse but never anywhere near as bad as initially, this is common with chronic lyme disease anyway but I do think my IgM deficiency could be connected.

I have read that Dr Horowitz one of the best Lyme doctors in US finds IgM deficiency in a number of his patients - he says Lyme is the only disease he is aware of that this is found.

Another bit of information I found was that with Relapsing Fever Borrelia it is necessary to have a good IgM response to clear the infection.

Thought provoking but not a lot of help.
My ME/CFS specialist said the low IgM along with my other immune abnormalities suggests my immune system has been fighting a chronic infection for a long time.

I still have suspicions of chronic Lyme (or other related pathogen) in my case, but my tests keep coming back negative. I may need to find my way to a doc more knowledgeable about tick-borne diseases, if Lyme might explain my low IgM.

Did your IgM increase with abx for Lyme? And did it go back down when you stopped the abx?
 
Sadly we have no expertise in UK for tick borne diseases except maybe Breakspear clinic which I can't afford, the specialist I did see some years ago is very conservative in treatment and not sure he even sees Lyme patients these days.
My GP persuaded a Rheumy to give me hydroxychloroquine plus my clarithromycin which has always helped and it was Rheumy who did rigorous testing before treatment. It was in fact after years of antibiotics but a 3 year break from lyme treatment, except that I had persistent ear infection which necessitated several course of antibiotics each time my lyme like symptoms improved hence the desire to try the combination which GP needed Rheumy to prescribe Hydroxychloroquine.

Another abnormality was MCV in red blood cells was high.
After 4 months treatment MCV was within normal range but didn't get the IGM test done even though I asked for it.

However I still have inflammation especially in legs and so may need repeat courses of antibiotics now and then to maintain good health which is not uncommon with Lyme.

Some lyme doctors will treat on clinical diagnosis and then empirically depending on response to treatment. Staying as sick as I was or maintaining current functioning is a no brainer - I'd rather be dead than live with the incapacity and pain I had years ago, small price to take antibiotics now and then to maintain present position.

Good luck in getting the necessary help - listening to information coming out from recent Stanford meeting, good to hear more in depth research on Tick borne diseases on the agenda - several ME/CFS specialists are finding more of their patient groups with TBD's we just need better tests, although the Advanced Laboratories culture test is sounding good for those in USA, not available here in UK.