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Primary Immune Deficiency with Autoimmune flares


I'm having some trouble with autoimmune attacks despite having deficient immune system. I've had on and off attacks of varying degree over the years, last one was pretty bad. I've got tissue destruction in my left cheek and along the jaw in front of my ear the skin is pretty mottled. It gets red/raised and inflamed as attack comes, as the flare goes down the red raised ceases and it turns dark brown. If I don't have an attack for a while it starts to clear. The inflammation starts from between my brows down my nose to the whole left side of my face. Both sides are affected but the right being so minimal I hardly notice it other than the inflammation. My eyes get very swollen around them and very blurred vision and hurt severe, the left side of course being the worst. I am currently taking prednisone for this as it was so severe.
I've also an infection in my left sinus going on. I had sinus surgery about 8 months ago and have had ongoing problems since.
I took kali bichrom 30 c last night before bed and 2x today so far. The congestion is moving and seem to be coughing much of it out but the sinus is still draining thick in the back of the throat but it also is congested and not moving as it should. I'll continue with the Kali for this.
Does anyone have any insight as to how to approach this immune system that is faulty and confused.
The autoimmune lupus and was diagnosed with it 25 years ago but then they said they weren't sure. Then I got a definite diagnosis on the immune deficiency so they ignored the immune attacks I suffered with and treat the immune deficiency for the most part. I suffer the inflammation and the butterfly rash, aching joints, stomach lining gets raw when the attacks are on. The cumulative effects of the attacks are starting to disfigure my face on the left side. Connective tissue is collapsing in spots. I'm desperate to find an answer/remedy to stop this madness, pain, suffering and misery.
Please help.
  LeiuLu on 2012-03-24
This is just a forum. Assume posts are not from medical professionals.
I see I have not provided enough information.
Diagnosed with lupus in 1986, primary immune deficiency in 2004.
I was pretty stable until 3 years ago that started with teeth under crowns. I ended up getting some of this removed but then was hospitalized for shingles. After that I recovered really well over the summer but by late fall had been exposed to something that involved my eyes. They swelled and were in chronic pain. Treated with antibiotic eye drops and they improved but not entirely. Ended up having the teeth removed that were root canaled as they were causing severe pain. This was on the left side of my upper jaw. I then took on another stringent healing program of organics, fresh pressed juices etc. (I have always been fairly stringent with my foods, no chemicals in my home or on my body etc). I felt really well late last spring up to July when my eyes and face swelled with intense pain again. I had two more root canals on other side upper jaw and had this evaluated to which they said they didn't see a problem despite they hurt severely and could not chew on them.
I saw ent who said the sinus was responsible because I had severe deviated septum from accident as a child that shattered some of the bone. Had the surgery in October and didn't recover real good. I had been put on antibiotics in July through the surgery, after surgery for about a month and then my stomach couldn't take it anymore so I went on a strict cleansing adding probiotics, raw kefir, yogurt etc. I was able to turn my stomach around to a certain degree, still working on this but improving slowly. However, keep going into sweats and have inflammation in left cheek so severe I cannot function, I have a foul taste in my mouth that I have never had and it feels like a bad tooth in my sinus except there are no teeth up there on that side to be responsible for this. The left eye is very sore, tight and swollen. This does get much worse when we have cold damp weather or anything stressing my body.

Foods are hard for me because I react so poorly to most of them. I drink lots of filtered water. I have trouble finding enough protein foods so pretty much it's from kefir and yogurt. I try to take in some red meat every few weeks but then my body has a hard time clearing it.

I have been on antibody replacement therapy on and off since I was diagnosed with primary immune but only total about 3 yrs total of therapy because I get frustrated and don't feel much improved with them.

When the eye infection started I also had started to get cold sores and broke out in shingles several times as well since. I just had a flare up of shingles a few weeks back. The initial shingles infection in 2010 did involve my face, left side and left eye, left side of scalp. So I could say I have nerve damage causing the pain in the left of my face from shingles, trouble is I've had this pain in that left side since 1985 when I was diagnosed with lupus. So it seems that the area of main attack was open to attack from shingles virus from being weakened over the years of attacks in the deep tissue.

One more thing, I have had an ongoing ulcer on the roof of my mouth that would come and go over the years, but in the last 1.5yrs it has been permanent and flares bad when the flares happen and then simmers down but never closes. I currenly also have other sores in my cheek and betweeng gum and cheek.

I had cellulitis infection in the right side of my face about two months ago caused from possible parotid gland stone. The right side has never given me trouble like the right side, it does go through the process of the same of the left side only on a much lower scale that I don't notice it much due to the excessive pain on the left side.

My body was pretty capable of keeping itself healthy and I lived a normal life until the teeth started three years ago and I declined rapidly after the eye infection, which I suspect originated from the infected teeth but now the teeth are gone and the eyes don't get better, they calm down but never get better. Also my eyes have always been a nice vibrant deep auburn brown, since of this happened here they are now hazel sickly grey green brown.

Thanks so much for your time. I hope this is not too much information. I got to looking around and it seemed a lot of info is given.
[message edited by LeiuLu on Sat, 24 Mar 2012 23:36:28 GMT]
LeiuLu 8 years ago

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