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Low IGG's and sick but told I don'tneed immuglogulin

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Chronic Fatigue Syndrome
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tambecka
New Member
Joined : Jan 2013
Posts : 3
Posted 2/3/2013 11:27 PM (GMT -7)
I have been sick a long time. I had a mother with many strange autoimmune problems. I was tested for Lyme but doctor at IGENEX does not think I have lyme. People who have low CD57 they now think is simply a marker for immune dysfunction--some call it "autoimmune lyme". I have tried to talk with the doctor in charge of IGENEX but he is "out on leave" for an extended period.

I have low immuglobulin levels (IGG) and low IGM, but my total IGG level is fine. I've tried contacting immunologists all over the country and no one will help me. I have many different symptoms, but many medications and chemicals I've reacted to all my life. I also have a positive HLA-B27 which is assoicated with many autoimmune illnesses. Other that being pre-diabetic, having IBS (alternating) gerd, and upper respiratory irritations (which I become allergic to) I don't know what's wrong. I have symptoms of neurological pain, insomnia, and weather sensitivity). Really in a quandry and tired of doctors (traditional and allternative).

If anyone has had any of these experiences, I would appreciate hearing from them, because I've had it.

I had a low titer to HHV 61, but nobody treats it or knows about it. If there is someone at University of Wisconsin I would like to know about them. I need to get titers to viruses checked again.

Thankyou,

Tambecka
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Recoveryme2day
Regular Member
Joined : Jul 2012
Posts : 335
Posted 2/4/2013 4:03 PM (GMT -7)
Welcome to the autoimmune disease etc. site. Its a good thing your not satisfied with just one diagnosis because the majority of us with CFS or any form of autoimmune disease have at least 1 other diagnosis', I have 6 medical and 2 mental. And finding the "root" illness is of the utmost importance even though it may never happen. Unfortunately Dr.'s just aren't that open minded or correctly trained to notice let alone treat anything outside there very small area of "expertise." This may seem out in left field but I would suggest looking into Celiac Disease or a Gluten/Wheat Allergy. I say this because this can cause all of you symptoms plus many, many more. I am only just finding out that 90% of my stomach/intestine issues are damage from this and 50% of my CFS symptoms, some of my pain issues all can be traced back to these food allergies. Hope this helps, Keep in Touch.
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bluejeans
Regular Member
Joined : Dec 2012
Posts : 269
Posted 2/4/2013 5:47 PM (GMT -7)
Depends on what iga and igm levels are. I called a help health line at a University Hosp for an immunologist. I had low c3 and c4 levels also. I faxed them copies of my blood work and I had an appt with their Immunologist the next week.
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grahamreiver1982
New Member
Joined : Jul 2013
Posts : 2
Posted 7/26/2013 12:04 AM (GMT -7)
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.
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JBH
New Member
Joined : Nov 2013
Posts : 1
Posted 11/6/2013 9:33 AM (GMT -7)
To all of you on this thread...I found this site recently that seemed spot on for my symptoms which are similar to each of you.

http://www.hfme.org/

It references information regarding a highly underdiagnosed disease, likely an autoimmune, called myalgic encephaolmyelitis - not to be confused with CFS.

I too have low IgA, very low IgM, severe exercise intolerance (it takes me two days to recover physically when I do exercise - causing joint pain, bone pain, muscle pain) , alcohol intolerance, chemical intolerance, orthostatic intolerance, difficulty regulating body temperature - (heat flashes or freezing) breathlessness, tachycardia, pulsatile tinnitus, cervical neck pain.

It has been two years.
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Tylersdad
Regular Member
Joined : Oct 2013
Posts : 24
Posted 11/6/2013 5:01 PM (GMT -7)
I'm anxious to the new rounds of blood tests results next week
I hope they find something the not knowing is killing me! Mentally I'm drained from all of this!!
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EarthMama
New Member
Joined : Mar 2014
Posts : 1
Posted 3/7/2014 9:23 AM (GMT -7)
I have low IgG levels, chronic EBV, HHV-6 and typical endocrine and immune dysfunctions of CFIDS. It has taken 3 years to finally get insurance approval for IVIG, and after 2 infusions, I'm cautiously optimistic--no sinus infection or bronchitis this winter. My son has the same IgG levels as I do and is frequently sick with viral infections and sinus infections. We've been to specialists who say his levels do not warrant IVIG (as they said mine didn't). I am looking for an immunologist in the Atlanta area who would be open minded enough to consider IVIG for him. My doctor is not an immunologist, which is why it has taken 3 years to get ins. approval.
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