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How rare is MBL deficiency?
I have two immune diseases: autoimmune urticaria and an innate immune system deficency called MBL (mannose-binding lectin) deficiency, which I heard was very rare. I am loking to find any information on either or support groups available.
Hi sam1242sam and welcome to the forum.
This is an old thread and chances are that the original poster(s) are not following it since it has been over a year and half since the last post.
Thanks for the suggestion anyways.
Cheers!
Niko
This is an old thread and chances are that the original poster(s) are not following it since it has been over a year and half since the last post.
Thanks for the suggestion anyways.
Cheers!
Niko
Try probiotics and see a naturopath. They will get you off antibiotics which are more helpful to your gut than helpful.
Hazelann:
My daughter takes a daily antibiotic since there is no treatment for low MBL. She had constant ear and sinus infections. Once she got any infection it could run from 2 weeks to 6 months before it cleared up. Extreme fatigue, daily fever, brain fuzzy, weak etc. she couldn't physically go to school. She would catch several things at once also. The antibiotic helps her fight off some common virus so they don't turn into more severe infections. When she needs to, she stops the low dose amox and the doc puts her on a stronger antibiotic until the crisis is over. This way she can still function at school. She takes an antibiotic break over the summer.
Equally important contact the primaryimmune.org(IDF) for their free school guide. Your daughter has legal rights under the ADA and the college must accommodate her medical needs at school, if you have proof she has an immune disability, have your doc write a letter and talk to disability services at the college. Contact or call the IDF for more help with that too.
Mu daughter was also was tested and had a low vitamin D level. Look at the vitamindcouncil.org for more info about that. Vitamin D should be between 50 and 80 mgl to be in the good range according to the council. Don't let a doc tell you 20mgl or less it OK, it's not especially for people with low MBL.
But I will say between the daily antibiotic and the vitamin D3 at 8,000 a day, my daughter only had 4 episodes of 2 weeks infections this last year. Compared to previous years this was a huge improvement. Every little change of shots, sinus rinses, hand sanitizer, etc helped and all together they made an improvement.
Through the immune deficiency foundation we found out that many immune patients with low MBL also had stomach issues. We had a GI doc who told her to use VSL#3 to help achieve and maintain a positive intestine balance. We get it over the counter at Costco, in the refrigerated pharmacy. It is more expensive then regular pro-biotics but no yeast infections, and her gut is much better.
Has your daughter been tested for food allergies? My daughter was 17 before we found out she had a life-threatening allergy to tree nuts! The immunologist told us that these people instinctively avoid any foods that may harm them.
Your daughter could be getting cross-contamination from foods.
More stomach info, my daughter had her gallbladder and appendix taken out last year! Seven docs and many ER visits and no one could say why she had all that pain. It was the GI guy who sent us to a specialist who said she had classic signs of gallbladder stones and then removed it and the appendix at the same time. Funny(not) the other docs missed the diagnosis due to her age.
Hope this info helps! The IDF and our immunologist have been the life saver for us. Our kids have the right to go to school and the ADA covers people with immune disabilities.
Good luck with health and school this year.
elbamom
My daughter takes a daily antibiotic since there is no treatment for low MBL. She had constant ear and sinus infections. Once she got any infection it could run from 2 weeks to 6 months before it cleared up. Extreme fatigue, daily fever, brain fuzzy, weak etc. she couldn't physically go to school. She would catch several things at once also. The antibiotic helps her fight off some common virus so they don't turn into more severe infections. When she needs to, she stops the low dose amox and the doc puts her on a stronger antibiotic until the crisis is over. This way she can still function at school. She takes an antibiotic break over the summer.
Equally important contact the primaryimmune.org(IDF) for their free school guide. Your daughter has legal rights under the ADA and the college must accommodate her medical needs at school, if you have proof she has an immune disability, have your doc write a letter and talk to disability services at the college. Contact or call the IDF for more help with that too.
Mu daughter was also was tested and had a low vitamin D level. Look at the vitamindcouncil.org for more info about that. Vitamin D should be between 50 and 80 mgl to be in the good range according to the council. Don't let a doc tell you 20mgl or less it OK, it's not especially for people with low MBL.
But I will say between the daily antibiotic and the vitamin D3 at 8,000 a day, my daughter only had 4 episodes of 2 weeks infections this last year. Compared to previous years this was a huge improvement. Every little change of shots, sinus rinses, hand sanitizer, etc helped and all together they made an improvement.
Through the immune deficiency foundation we found out that many immune patients with low MBL also had stomach issues. We had a GI doc who told her to use VSL#3 to help achieve and maintain a positive intestine balance. We get it over the counter at Costco, in the refrigerated pharmacy. It is more expensive then regular pro-biotics but no yeast infections, and her gut is much better.
Has your daughter been tested for food allergies? My daughter was 17 before we found out she had a life-threatening allergy to tree nuts! The immunologist told us that these people instinctively avoid any foods that may harm them.
Your daughter could be getting cross-contamination from foods.
More stomach info, my daughter had her gallbladder and appendix taken out last year! Seven docs and many ER visits and no one could say why she had all that pain. It was the GI guy who sent us to a specialist who said she had classic signs of gallbladder stones and then removed it and the appendix at the same time. Funny(not) the other docs missed the diagnosis due to her age.
Hope this info helps! The IDF and our immunologist have been the life saver for us. Our kids have the right to go to school and the ADA covers people with immune disabilities.
Good luck with health and school this year.
elbamom
Hiya,
My daughter is on fexofenadine for her allergies and god only knows what for her stomach problems which they seem to think is IBS but I'm not so sure myself. However, who am I to say! What does the antibiotic do for her? They have never suggested she takes any so if I can gather ammunition for the next time she sees the specialist then I can mention it to them. She does take a multivitamin though.
My daughter is on fexofenadine for her allergies and god only knows what for her stomach problems which they seem to think is IBS but I'm not so sure myself. However, who am I to say! What does the antibiotic do for her? They have never suggested she takes any so if I can gather ammunition for the next time she sees the specialist then I can mention it to them. She does take a multivitamin though.
Dear Hazalann:
I would absolutely go to primaryimmune.org for more info about the MBL. We found an immunologist who does allergies, asthma, and immunology and that fits will many my daughter's problems. Is your daughter taking allergy meds, and allergy shots? Do she do a sinus rinse? Is she taking vitamin D? In addition to all of the above my kiddo also does a daily antibiotic during the school year and all of those things really help.
elbamom
I would absolutely go to primaryimmune.org for more info about the MBL. We found an immunologist who does allergies, asthma, and immunology and that fits will many my daughter's problems. Is your daughter taking allergy meds, and allergy shots? Do she do a sinus rinse? Is she taking vitamin D? In addition to all of the above my kiddo also does a daily antibiotic during the school year and all of those things really help.
elbamom
Hiya,
My daughter has just been diagnosed with low MBL as I had been diagnosed with zero MBL. I've never really had any health issues other than abscesses (HS). However, she is a walking nightmare. She suffers badly from allergies and when she gets an attack it can last for a few days rather than a few hours. She has problems with her stomach which often cramps. She had to have 2 blood transfussions but they don't know why her FBC was so low. She is a 16 year old kid who has had to have so much time off college that she's now got to re-sit the entire year. The poor kid is a mess. Yet I wouldn't have known that I have this problem as I've never suffered from anything really. One cold every 18 months to 2 years in general and never been alergic to anything other than plasters and morphine!
My middle son has special needs and they thought at one time he had hypothyroidism. He's been on growth hormones for nearly 2 years though as his pit gland is small and obviously wasn't working correctly.
It does seem odd that some of us can sail through life with no problems yet others like my daughter is dogged with problems all the time. Saying all that, she never had problems up until about 5 years ago so how weird is that?
My daughter has just been diagnosed with low MBL as I had been diagnosed with zero MBL. I've never really had any health issues other than abscesses (HS). However, she is a walking nightmare. She suffers badly from allergies and when she gets an attack it can last for a few days rather than a few hours. She has problems with her stomach which often cramps. She had to have 2 blood transfussions but they don't know why her FBC was so low. She is a 16 year old kid who has had to have so much time off college that she's now got to re-sit the entire year. The poor kid is a mess. Yet I wouldn't have known that I have this problem as I've never suffered from anything really. One cold every 18 months to 2 years in general and never been alergic to anything other than plasters and morphine!
My middle son has special needs and they thought at one time he had hypothyroidism. He's been on growth hormones for nearly 2 years though as his pit gland is small and obviously wasn't working correctly.
It does seem odd that some of us can sail through life with no problems yet others like my daughter is dogged with problems all the time. Saying all that, she never had problems up until about 5 years ago so how weird is that?
Hi
I also have MBL Deficency as well as CFS and Alpha 1 antitripcine, MBL Seems to come with other Autoimmune problems and sometimes lots of them. I have had Phnewmonia,Quincy and Viral Menengitis all due to severe MBL Deficency. I have battled and battled to get answers and still i struggle I get constant Recurring Chest and Ear infections as well. it is a living nightmare. I would be very intrested in hearing if anyone else has had anything simular.
I also have MBL Deficency as well as CFS and Alpha 1 antitripcine, MBL Seems to come with other Autoimmune problems and sometimes lots of them. I have had Phnewmonia,Quincy and Viral Menengitis all due to severe MBL Deficency. I have battled and battled to get answers and still i struggle I get constant Recurring Chest and Ear infections as well. it is a living nightmare. I would be very intrested in hearing if anyone else has had anything simular.
Have you infections often? How are they treated?
I was diagnosed with MBL deficiency today. The doctor said that MBL deciciency occurs in 15% of people. I have also some IgG3 deficiency. I am 64 years old and have chronic sinusitis and possibly chronic tonsillitis. Other diseases are hypothyroidism, hyperparathyroidism, muscle dystonia, etc.
I was diagnosed with MBL deficiency today. The doctor said that MBL deciciency occurs in 15% of people. I have also some IgG3 deficiency. I am 64 years old and have chronic sinusitis and possibly chronic tonsillitis. Other diseases are hypothyroidism, hyperparathyroidism, muscle dystonia, etc.
MBL is not rare, however is a primary immunodeficiency disorder. You should check out Immune Deficiency Foundation. MBL deficiency is a compliment deficiency. Check out this site: http://www.primaryimmune.org/publications/book_pats/e_ch13.pdf and http://www.primaryimmune.org/about_pi/about_pi.htm. MBL was rare, but now that there have been so many studies, it has found to be more common then led on. It never goes away as it is a genetic disorder. But, there are many things that you can do to help prevent infectious diseases. Good luck to you.
Here are a couple of sites with some information. One suggests that MBL occurs in 3% of the population (not too rare). I hope this helps you find more information!
http://www.patient.co.uk/showdoc/40025187/
http://www.emedicine.com/ped/byname/complement-deficiency.htm
And this site has some discussion of autoimmune urticaria:
http://www.aocd.org/skin/dermatologic_diseases/urticaria.html
Good luck to you.
http://www.patient.co.uk/showdoc/40025187/
http://www.emedicine.com/ped/byname/complement-deficiency.htm
And this site has some discussion of autoimmune urticaria:
http://www.aocd.org/skin/dermatologic_diseases/urticaria.html
Good luck to you.
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