Hello to All: I'm very frightened...last spring my doc discovered that I have suspected IgM deficiency - 38 (lab range 60-363). I chose not to pursue IGIV because, at the time, I didn't feel that unwell. I also have Hashimoto's Disease and a recent diagnosis of hyperparathyroidism. I had to leave my doc, who was out of network on my insurance, and my new doc either doesn't believe that I have this diagnosis, or doesn't choose to pursue it. I have had three illnesses in the last five weeks; a cold that didn't respond to two courses of antibiotics, an intestinal flu that lasted for four days, and now completely inexplicable chills and fever, malaise that has lasted nearly 24 hours. I have a history of pneumonias and sinus infections. What can I do next? I'm hesitant to return to my good doc, since he can't make referrals that would be covered by my insurance, nor can he treat me with IVIG with any confidence that it will be covered by insurance. Is there some way I can convince my new PCP that this is something that cannot be ignored?

Does anyone have any links to IgM deficiency? I am an inveterate 'net researcher but I have been able to find almost nothing on IgM Deficiency.

Thank you ahead of time for any responses.

Best,
Laurie

I was diagnosed with selective Igm deficiency in 1992 I have lived with this for 12 years. I was told by many physicians that IVIG does not help with Igm. It is more for Igg deficiency. I have had sinus surgery due to chronic sinusitis had caused major damage to my sinuses. I use to spend more time on antibiotics than off. I have had meningitis multiple times, and just generally sick of being sick many times. I have just recently had pnuemonia then cat scratch fever. After multiple trips to multiple doctors I went to a Infectious Disease specialist. I think I am finally going to get some answers to why it has been even worst lately.
A immuglobulin lab study showed my Igm as usual 15. However, this time my Igg was low. The first test subclasses were not performed, therefore more lab work was drawn last Friday. If Igg subclasses are low then I will be a candidate for IVIG.
Many years ago I went to a physician from John Hopkins, He along with a physician who used to be at the National Jewish Immunological Society in Colorado stated that IVIG infusions would not help me. They did however state that I would have to be on antibiotics longer than customary lengths of time.
I went to a immunologist last year that stated Igm defiencies did not do anything. Bull you know what. I immediately changed doctors. I definitely trust the specialist from John Hopkins, and NJIS more than a local doctor.
There is a Primary Immune Defieciency Society, but as you have probably found Igm is usually left out. Igm ONLY is rare. Igm with Igg or IgA is not as rare and can be treated.
I hope this helps. Look under WHO. World Health Organization and see what they say. I faintly remember reading something before on their website.
When I come across anything in the future I will send it to you.

Rhonda,

I am desperately trying to find an Immunologist that understands Selective IgM Deficiency. I have been seeing doctors over the last year due to an ever-increasing number of Sinus and respiratory infections. Final I had a full battery of Blood work done that showed my IgM at a count of 16 and the others at normal levels. My Primary doctor saw this as a significant finding but the immunologist that he sent me too said the same thing that you got "low IgM doesn't mean anything". I now need to find a specialist that will seriously consider this condition. I'm starting to be on Anti-biotics more than I'm off of them.

Hi,
I was just looking up IGM defeciency (spelling) it is related to upper respiratory and sinus problems. I was just diagnosed with IGA,IGG,IGM,IGE, I have to see my allergist this week.
See if you can go to and allergist immunologist, not just a plain allergist. He or she can order blood, and tell you how to handle the problem.

Hope this helps some.
sunny01@verison.net

IgM is a precursor to IgG and if there is no IgM to class switch then whatever IgG is there could be "blank". Noone has mentioned yet having antibody testing done. If the antibody testing shows that you can't mount antibodies then whatever your IgG level is doesn't mean anything if there is no function behind it. IgM deficiency with IgG or IgA deficiency = CVID. regardless of what Ig is low if the antibody function testing is deficient then IVIG is warranted for replacement. There are only trace amounts of IgM in IVIG.

My husband has IgM deficiency with antibody deficiency which is diagnosed as CVID and my daughter has CVID with deficient all Ig's and antibody deficiency.

Ursula

Hi Rhonda, Was trying to find info about your disease process and lo and behold I found you! Still trying to understand so I can be a better support system for you in this struggle. Sorry you have had such a bad few months and look forward to working with you to get you back to optimal health!

Ursula is correct. Every one with or suspected immune deficiency should have antibody testing. This is relatively simple. You receive an immunization, my doctor has preferred the pnuemovax or flu vaccine for myself and my son in the past and it did show that I did not produce antibodies. He repeated this many times until I did produce a detectible amount of antibodies. This was before I was diagnosed with IgG, just IgM at that time.
Doug, As for the doctor you need to seek you need to seek a reputatable immunologist. When you find one that wants to perform the antibody testing, you have found your home.
Rhonda

My nephew 6 has just been found to have 0 IgM but has the others. His immunologist/Allergist is looking for another specialist who knows about this to send him to. He has never seen this before. Does anyone have any contacts that we could use or any advice? Thank you.

I was recently diagnosed with IgM Deficiency
by an infectious disease doctor during a recent hospital stay for a serious abscess MRSA(Methcillin-Resistant Staphylococcus Aureous) bacterial infection in my arm. The low IgM level was partialy responible for the invasion of the MRSA bacteria. The MRSA abscess was treated with IV Gentamycine antibiotic and oral minocyline. The infectious disease doctor informed me that IgM deficiency is a genetic defect and nothing can be done to build up the IgM level in a person. Live a normal life but be prepared to take antibiotics when an infection occurs. Seek medical help for infections that last more than 3 days. I am 49 years old and have had frequent sinusitus and upper respirtory illnesses (colds) since I was 7 years old. Colds are generally viral infections and don't respond well to antibiotics. Take Tylenol for fevers, do not use aspirin for fevers. Get plenty of rest and wash your hands frequently.

read this link about selective IgM deficiency.
[www.madisonsfoundation.org]

Well it sounds as if you have aids. your going to die pretty soon if you dont do something about your problems. try eating healthy, some exlax to **** out all the bad bacteria in your stomach. hope you dont die, and i hope you get to read this message.

My 2 year old was perfectly healthy until 6 months of age at which time he got the flu. He then went for 6 months without being well, 3 months healthy, 6 months sick and now healthy again. He has now had 3 confirmed cases of pneumonia (chest x-rays)plus 3-4 more suspected, numerous respitory infections, ear infections and general colds. He has been on antibiotics most of his life. He also has asthma and reflux. We're now on his 2nd set of tubes. Twice now his IgM has come back low (31) with all others normal. I have been told that, in and of itself, this is not significant as long as everything else is normal. Also the ever popular, "he'll out grow it." In reading, it sounds like Selective IgM Deficiency might be the cause (in my VERY untrained opinion). Can anyone else tell me what tests might indicate Selective IgM Deficiency? Or something else that might be considered.

My IgM's are 8 and IgG are 1100 the rest are normal. I am an asthmatic, and have chronic sinusitis and have had pneumonia twice. I do not build any antibodies to the pneumonia shot (pneumovax). I was blessed to find an immunologist who monitors my levels, and understands that depending on my levels how vulnerable I am to an illness. Especially since I am a nurse. My advice to those who are having trouble with finding answers and getting help is it to keep looking for a new doctor (immunologist). Never ever stop looking, I know it can be frustrating, but don't give up, finding someone who will work with you is so worth while.
Donnie