Author Topic: Interesting info from doctor  (Read 2730 times)

irish

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Interesting info from doctor
« on: December 20, 2010, 12:50:04 PM »
My hubby saw my immunologist last week. He has also been diagnosed with low IgG levels plus a low Mannose binding lectin. I had not heard of that little gem.

Very interesting!!! This is a product (I don't know just exactly what it is, animal, vegetable or mineral???) but when the bacteria enter our body this little gem immedicately covers the bacteria with a substance that makes it harder for the bacteria to move about and replicate. This means that when you have enough of this product one is less apt to get infections. Without it the bugs move in fast and spread fast.

My hubby is on no treatment at present. He is being monitored for infections by the immunologist. Any time he gets sick he is to call the doc and will be ordered antibiotics over the phone. If it seems that he needs to be seen because of an aggresive infection, etc he will also go to our GP.

This way the immunologist knows when and what is going on with hubby. If he has too many infections he will be put on a prophylactic antibiotic a certain number of days a month or so. If he gets too many infections and the antibiotics aren't doing the trick he will be the second member of the family to get IVIG.

Just another test that you might want to ask your doc about if you are having a lot of infections. You will find that regular docs aren't into this type of blood work and you most likely will have to be seen by immunologist or hematology to get some of this testing done. Good luck all. Irish ;D

navydad

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Re: Interesting info from doctor
« Reply #1 on: December 20, 2010, 01:19:12 PM »
How do they know what anti to use?,, biggest I was on was vanco,,

Joe S.

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Re: Interesting info from doctor
« Reply #2 on: December 20, 2010, 02:35:30 PM »
I had to do a quick search on this because I had no idea what it is.

Low mannose-binding lectin concentration is associated with severe infection in patients with hematological cancer who are undergoing chemotherapy. Low mannose binding lectin predicts poor prognosis in patients with early rheumatoid arthritis.

These above are a couple of the titles of research papers that I found. The gobblty-gook was very difficult to get through. I do not think I have enough background in human biology to help.

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Carolina

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Re: Interesting info from doctor
« Reply #3 on: December 20, 2010, 02:47:38 PM »
Ok, new rule.

If I don't understand it, it doesn't exist, and I hereby pronounce you well.

Sigh.

Why do people be getting stuff no one has ever heard of???????

It's hard enough with garden variety things.

Well, I guess we'll all just Google our hearts out and find the new stuff.

It's GOOD someone is learning these things, and checking on us.

But, I want life to be perfect, with complete absence of pain.

And it keeps moving the in the OTHER direction!

So Irish, I hope all goes well with your husband, and every body stays on top of stuff.   Lots of infections are the pits.

He's lucky to have a wife who knows a ton, and can help him keep up with his protocols.

Keep us posted.

Meanwhile, I'm off to Google.

Kisses

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irish

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Re: Interesting info from doctor
« Reply #4 on: December 20, 2010, 03:51:17 PM »
Right now we are talking the upper respiratory and lung infections. He has been having them every time we turn around for about 5 years. We thought it was from him smoking, but he hasn't smoked since his stroke and his lungs are some improved so wanted to have him checked out---bingo, there was something wrong with him.

The doc said that this is why hubby got those 4 bad infections when he had his back surgery. He almost died and spent 3 months in the hospital. Who would have thunk. We just thought he was unlucky and none of the docs even mentioned that his immune system could possibly be low. I wasn't diagnosed then either and had no clue. Definitely not a good time in our life. But then, lately we just are thankful to be able to sit up and take nourishment has they say.

He still had the lung infection though. Actually, he had a lot when he was young also, but usually in fall and winter. The doc will just put him on a regular antibiotic and alternate to another kind with every infection. If it seems to be something that is not clearing within the days on the antibiotic, etc we will get cultured here in town.

If he would need to go on a prophylactic antibiotic---one that is given in a lower dose every day---for as long as necessary they usually start with amoxicillin and often switch to a different antibiotic every 3 months to prevent the bacteria from becoming resistant.

Mannose binding lectin is something I had never heard of either but it was very interesting to find out that he had it. The scary thing is here are two parents with autoimmune issues and immune issues. I watch our kids and grandkids like a hawk cause it is so scary to think that they can get this stuff also. Irish ;D
« Last Edit: December 21, 2010, 01:05:54 PM by irish »

deeindiana

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Re: Interesting info from doctor
« Reply #5 on: December 20, 2010, 04:06:56 PM »
My gosh! Who could even imagine such a thing! I'm so sorry your husband has to deal with this. It sounds like the doctor has a good grasp of the situation so hopefully he will get by with no complications or problems. Take care of each other!
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Carolina

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Re: Interesting info from doctor
« Reply #6 on: December 20, 2010, 05:05:41 PM »
Well, Irish, I looked it up.

So your husband has a deficient immunity and then you have an over active immune system which is attacking your own body.

The whole things is scary.   

I'm glad he's stopped smoking and I'm sure you are too.

It doesn't sound like there's any cure?   Or is it self limiting?

It sounds, but believe me I'm just reading stuff, that it may have been CAUSED by lots of infections.  It isn't likely that your husband has always had this since birth.  So it's probably secondary.   I

http://www.worldallergy.org/professional/allergic_diseases_center/suspected_immune_deficiency/

secondary immune deficiencies stem from impairment of the immune response through another mechanism, such as an infection, metabolic derangement, malignancy or toxins, with the immune defect being a secondary manifestation.

But it is so annoying NOT to be able to find out a prognosis.   All the research seems to be tied to this condition in people with other serious problems, like RA.

Please do keep us informed, Irish.   

Kisses to you and to your husband.  (well, maybe not for him, don't wanna give him my germs!)

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irish

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Re: Interesting info from doctor
« Reply #7 on: December 20, 2010, 08:58:09 PM »
Caroline, I have the autoimmune issues which are sjogrens, myasthenia gravis, hashimotos, bullous pemphigoid, diabetes and asthma. Plus I have severely low t-cells which causes me to have many infections. I can't take the DMARDS or any of the drugs that slow the autoimmune attack on my body because one of their side effects is that they cause increased risk of infection.

My hubby has Celiac sprue and microscopic colitis which are both autoimmune diseases. The IgG level is part of the immune system which protects the body from infection. We don't know when he got this but chances are he has had it brewing for many years. It can be genetic, as can the low t-cells, however, our immunologist always thinks that many times the autoimmune and immune are very closely related.

It is a very complicated affair. You will see the term Primary Immundeficiency and there are many different diseases listed under that with different components of the blood being involved.

I get treated with IVIG for my myasthenia gravis and this also helps protect me from infections. I have infections but they are not nearly as bad as they used to be. If hubby has too many infections that are hard to control he could end up on the IVIG also. Don't try to figure it all out. It is darn complicated and some days I may be able to tell people a little about it and then on my bad days I am lucky if I can remember what I have. Irish ;D

navydad

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Re: Interesting info from doctor
« Reply #8 on: December 21, 2010, 04:59:34 AM »
It can be so complicated, so many things to have to worry about,, never knowing whats going to happen next