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HLA Positive and low immune system

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Posted 6/7/2013 7:23 AM (GMT 0)
I am HLA-B27 positive and have had many problems as did my mother and sister. I don't ut have AS but my sed rate has been elevated (19 points higher than highest normal range). My symptoms keep changing and I haven't found a doctor who can help me.
I have low IGG subclasses, but not total IGG, low IGM as well. None of the immunologists who treat people with IVIG replacement think that my numbers are low enough.

A doctor who treats CFS did immunological studies on me. I do have inflammation and one cytokine that is assoicated with autoimmune arthritic diseases that can affect the central nervous system was high.
But I also have a very low interluekin that lowers my resistance to mucosal bacterial and fungal infections.
The research is indicating that people with autoimmune diseases have low funtioning immune systems but no one is putting this altogether as far as treatment is concerned. If anyone knows of a immunologist who understands the HLA-B27 antigen I would be interested in having a consult with that person,
I'm sick of dealing with doctors who don't understand any of the immunological research that underlies autoimmunity.
Posted 7/26/2013 7:00 AM (GMT 0)
Hello,


I have the following lab abnormalities:

- Low IgG1 and low IgG3 (total IgG is "normal"
- Low C3 (with normal C2,C4,& CH50) of the "complement system/pathway"
- Low total IgM levels (Total IgA and IgG were normal)
- Low Vitamin D level

SYMPTOMS (these are the main ones, but I have MANY):

- full-body dysesthesias/nerve pain
- chronic recurring infections (ears, nose, throat, and lungs)...I know this is due to low IgG1, IgG3, IgM, C3, and vitamin D
- bone pain in hips...feel arthritic all over
- intolerance to heat/cold
- MSG, aspartame, gluten...etc gives me irrational rage and makes the nerve pain worse...could be autoantibodies against Glutamate Receptors (NMDA, AMPA, or kainate....or possibly a channelopathy)

- and MANY other symptoms

I figured most of this out on my own. MOST doctors are dumber than dirt and won't help me.

What I think is going on (based on what I currently know...but I will keep learning....won't give up):

I think what is going on could be one of the following, or some combination:

- some form of cancer
- autoimmunity (immune-complex disease), channelopathy, and/or Glutamate Receptor autoantibodies
- Infection

This is an oversimplification, but I will explain more if you would like.

***This all started with me when I was 27 years old. I am currently 31 years old.

I received a ridiculous amount of vaccines at that time. I got the vaccines and worked in rural South Korea for a year. I was sick the whole time in South Korea. Therefore I don't know if it was the vaccines that caused the problem...or if I picked up an infection in South Korea. I also had smoked cigarettes for 8 years...that is why I thought cancer was a possibility because it can cause autoimmunity known as "paraneoplastic neurological disorders".

Here is a synopsis:

- cancer could be causing paraneoplastic disorder because I was a smoker
- I could have an infection(viral, bacterial, fungal...etc.) from South Korea...this would explain weak immunity..and some pathogens trigger autoimmunity........I HAVE SIMILAR GENETICS AS YOU...AUTOIMMUNITY RUNS IN MY FAMILY

We should compare notes. The doctors are going to let us suffer and/or die prematurely.

Keep your spirits up. I know how you feel.


- B. G.
Posted 7/26/2013 12:20 PM (GMT 0)
Tambecka and Graham,

Welcome to the forum.

Many who get one auto-immune disease will get others, and may in fact get multiple others ( there is a statistic out there, but don't recall the number, sorry).

I would strongly suggest you try LDN, low dose naltrexone - it put me in remission with my UC, but has proven to put others with Parkingson's, MS, Crohn's, and a slew of other diseases either in remission or at the very least with greatly reduced symptoms.

LDN has virtually no side effects and is an immune system modulator.

If any of this interests you, you'll find a post on LDN on the UC Resources pages, and if you have any further questions, feel free to email me and I will help you as much as I can.

Graham, you're right about doctors, most of them are clueless, and THAT's the reason you need to be your own best doctor.

 

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