Holy crap -- IgM deficiency

[heapsreal]

@SOC - That's really interesting stuff! For one, it's amazing that you found a hematologist willing to treat an ME patient with serious medicine!

Dr. Jay Goldstein's first effective treatment for ME patients was IVIg. He used it on a lot of patients with very good results until he got too much pushback from the insurance companies - but it did seem to work.

Broadly, it's an anti-inflammatory. it's the treatment of choice in Guillain-Barre syndrome, which is the diagnosis I've gotten from a few neurologists.

Definitely keep us updated - I'm very curious to see how it works.

I dont think soc was being treated with ivig for her ME but for her immunoglobulin defiency .

 

[minkeygirl]

@Eeyore IVIG and Guillian-barre. Treatment but not proven that effective.

http://www.ncbi.nlm.nih.gov/m/pubmed/20396937/

 

[SOC]

For one, it's amazing that you found a hematologist willing to treat an ME patient with serious medicine!

He's not treating "an ME patient" , he's treating an immune-deficient patient. He knows nothing about ME, and doesn't appear to care to learn anything about it. As far as I can tell, he's treating a lab result, not an illness.

I brought up the issue of ME as a possible autoimmune disease today and he shut me down before I got two sentences out. He simply didn't want to hear about it. I chose not to push it as CFS is considered a psych condition by my local medical monopoly (of which he is a part) and I don't want to threaten my access to medical treatment. I'm getting the IVIG based on lab results and that's sufficient for now.

 

[Eeyore]

@SOC - I feel your pain.

No one else but an ME patient could understand why you would go to a doctor, know what you have wrong with you (ME), and yet describe the illness w/o using the name at all, or describe other symptoms, for fear that using the actual name of the illness will prevent you from being treated with respect - or treated at all!

Nonetheless, Dr. Goldstein had excellent results with IVIg in ME - so I'll be quite curious to see how your symptoms respond, although it won't be easy to tell if it's unique to you and some other immune deficiency or ME - or both.

It does make more sense though that you'd be able to get treatment under a different name.

I have so much anger towards a very large chunk of the medical profession - in part because they've screwed up my life so much, and in part because as a scientist I'm appalled by their complete lack of scientific thinking - and at the same time they have all the power! It's so frustrating.

Fortunately, there are some really good docs out there - I have several (PCP, ME doc, Endo, others). They aren't that easy to find though, and I do a lot of driving to get to mine. Of all the docs and specialists I have, not one is in my own town. Most are between 45 mins and 2 hrs away.

 

[JaimeS]

Update on this:

I was (FINALLY!) re-tested for IgA, five years after my first low test. IgE is actually higher than before. (Lovely.) Every IgG class is almost exactly the same: that is, IgG1 and IgG4 are on the low side, but IgG2 and 3 are dead-center normal. UNLIKE before, my total IgG ended up pretty normal. I guess they must all be up a bit except for IgG4.

IgA = 65-mg/dL
IgE = 313
IgG1 = 409 (this lists the range as being 382-929)
IgG4 = 4.0 mg/dL (this lists the range as being 4.0-86.0)

Values are actually flagged, so I may have infusions in my future.

-J

 

[wastwater]

I wonder if I may have some inherited immune anomoly like this,I've had bad reaction to measels vaccine and EBV.I don't seem to get any infections at all now.I saw a mention of sensorineural deafness I have that.

 

[out2lunch]

Update on this:

I was (FINALLY!) re-tested for IgA, five years after my first low test. IgE is actually higher than before. (Lovely.) Every IgG class is almost exactly the same: that is, IgG1 and IgG4 are on the low side, but IgG2 and 3 are dead-center normal. UNLIKE before, my total IgG ended up pretty normal. I guess they must all be up a bit except for IgG4.

IgA = 65-mg/dL
IgE = 313
IgG1 = 409 (this lists the range as being 382-929)
IgG4 = 4.0 mg/dL (this lists the range as being 4.0-86.0)

Values are actually flagged, so I may have infusions in my future.

-J

Jaime: I'm going to bump this thread with your post because I'm in the same boat regarding immunoglobulins. And I strongly feel these protein anomalies are connected to the blood flow/viscosity issues we're currently discussing on the other thread.

I haven't had my IgM and IgG tested for two years, but here's what Nichols Institute found in June 2014:

IgM: 28 (48-271 mg/dL)
IgG1: 384 (382-929 mg/dL)
IgG2: 354 (241-700 mg/dL)
IgG3: 37 (22-178 mg/dL)
IgG4: 20.8 (4-86 mg/dL)
IgG: 755 (694-1618 mg/dL)

IgA and IgE have always tested middle of the range; it's IgM and IgG that have been the problem children.

It's interesting that my main stream docs get a bit weird when they see IgM deficiency and low IgG, but the functional medicine docs do not. It's like they almost expect it.

I know that low IgG isn't uncommon in our patient population. What about IgM deficiency?

And to what extent do these two go hand-in-hand? In other words… does anyone ever have IgG in the upper half of the range who is also IgM deficient? Or is the IgM deficiency always seen with IgG in the lower 25% of the range?

Is this another indicator of our disease that's being ignored?

 

[JaimeS]

What about IgM deficiency?

Supposedly super-rare. You're one in a million, @out2lunch !

Or, well, you're 3/10,000. That's the estimated prevalence.

Secondary SIgM deficiency is much more common than primary SIgM deficiency and may be seen in association with malignancy, autoimmune disease, gastrointestinal disease, and immunosuppressive treatment.
Some patients are asymptomatic, whereas others (often infants and small children) develop serious infections. Patients may develop prolonged or life-threatening infections caused by both encapsulated bacteria and viruses, especially in infancy. In older children and adults, SIgM deficiency is usually discovered during the investigation of other conditions, such as autoimmune disease or malignancy.

Serum immunoglobulin levels are controlled by intricate immunological regulatory mechanisms, and heterogeneity is believed to exist in the pathogenesis of SIgM deficiency. Little is known about the pathological features of SIgM deficiency at a cellular level, given that the condition is so uncommon. Processes that control the survival of IgM in the circulation and may otherwise regulate its concentration in serum have not been well described; alterations in clearance mechanisms, in addition to altered production of IgM by lymphocytes, may contribute to selective deficiency of this immunoglobulin isotype.

From Medscape, here.

Additionally, IgM deficiency is often secondary to 'autoimmune' conditions.

-J

 

[JaimeS]

And to what extent do these two go hand-in-hand? In other words… does anyone ever have IgG in the upper half of the range who is also IgM deficient? Or is the IgM deficiency always seen with IgG in the lower 25% of the range?

Generally speaking, if your IgA is low, your IgM or IgE will be high -- possibly it's compensatory.

I'm going to guess that the 'normal' IgE and IgA are actually elevated : as in, that's as high as your body can get them.

You may be one of those people that would really benefit from rituximab. It looks like your WBCs are falling down on the job.

 

[out2lunch]

Supposedly super-rare. You're one in a million, @out2lunch !

Or, well, you're 3/10,000. That's the estimated prevalence.

Actually, I suspect that number is much higher, more like 100/10,000. And I'm basing that on...

Additionally, IgM deficiency is often secondary to 'autoimmune' conditions.

… this. Autoimmune diseases are on the rise. Big time.

So if IgM deficiency stems from autoimmune syndromes, then 3/10,000 is way too low.

 

[out2lunch]

Generally speaking, if your IgA is low, your IgM or IgE will be high -- possibly it's compensatory.

I'm going to guess that the 'normal' IgE and IgA are actually elevated : as in, that's as high as your body can get them.

You may be one of those people that would really benefit from rituximab. It looks like your WBCs are falling down on the job.

I've thought about Rituxan. But I'm not sure I could afford this without Medicare. And I'm pretty sure they wouldn't approve it for ME/CFS or SIgM Deficiency.

 

[JaimeS]

So if IgM deficiency stems from autoimmune syndromes, then 3/10,000 is way too low.

IgM deficiency may stem from autoimmune conditions, but not all autoimmunity leads to IgM deficiency. The article that cited that figure was recent.

-J

 

[undiagnosed]

Jaime: I'm going to bump this thread with your post because I'm in the same boat regarding immunoglobulins. And I strongly feel these protein anomalies are connected to the blood flow/viscosity issues we're currently discussing on the other thread.

I haven't had my IgM and IgG tested for two years, but here's what Nichols Institute found in June 2014:

IgM: 28 (48-271 mg/dL)
IgG1: 384 (382-929 mg/dL)
IgG2: 354 (241-700 mg/dL)
IgG3: 37 (22-178 mg/dL)
IgG4: 20.8 (4-86 mg/dL)
IgG: 755 (694-1618 mg/dL)

IgA and IgE have always tested middle of the range; it's IgM and IgG that have been the problem children.

It's interesting that my main stream docs get a bit weird when they see IgM deficiency and low IgG, but the functional medicine docs do not. It's like they almost expect it.

I know that low IgG isn't uncommon in our patient population. What about IgM deficiency?

And to what extent do these two go hand-in-hand? In other words… does anyone ever have IgG in the upper half of the range who is also IgM deficient? Or is the IgM deficiency always seen with IgG in the lower 25% of the range?

Is this another indicator of our disease that's being ignored?

Same here, low ESR 1-2, IgG1 deficiency, IgG4 deficiency, borderline IgM, normal total IgG. I also think there may be a connection as you mentioned.

On a different note, has anyone here with IgM deficiency or borderline IgM had Oral Hairy Leukoplakia? I found a paper here that associated low IgM to this lesion, although, the patients were also taking inhaled steroids which is also a factor.

 

[Pyrrhus]

Poll:

Poll on Immunoglobulins - Please respond if you've been tested!
https://forums.phoenixrising.me/thr...ns-please-respond-if-youve-been-tested.39673/

 

[Pyrrhus]

Related discussion:

Do low IgM levels affect our ability to make antibodies against infections?
https://forums.phoenixrising.me/thr...-to-make-antibodies-against-infections.84390/