Low Immune System And Dysautonomia

[janelle]

Hi everyone, its been a while since i've been on,i have a question,

I seem to be catching everything, and been getting ear, throat infections.

Is my dysautonomia making me more suseptable to infections? does eveyone else have the same thing?

Janelle..

[icesktr189]

Yes I do because I have ebv. Have you been checked??

[arizona girl]

Hi pandy, aren't you the one who is already getting IVIG for your low immune system? I am getting it too! Getting lots of infections is what happens with this condition. IVIG helps with the infection rate, but you still need treat any infection that comes along with the appropriate meds. Yes it can cause symptoms of dysautonomia, as it is also associated with companion autoimmune illnesses. I have small fiber autonomic autoimmune neuropathy causing my orthostatic intolerances, but you can have anemia or several other autoimmune illnesses doing the same thing.

I was told by my doctor that all infections need to be treated quickly and agressively because with a weak immune system you can die from an untreated infection.

BTW how are those treatments going for you. I've had some side effects and they had to switch products on me because of that. I'm now on privigen, carrimune was awful for me and raised my blood glucose because it had 2% sucrose. My metabolic profile is now starting to improve, but I haven't lost the weight I gained. The headaches were terrible and I've only had one bad one since the switch, when I was infused when my menstrual cycle was starting. So, now we will move my infusion the next time that is going to happen.

Good to see you back!

[janelle]

Thankyou ladies for replying, im so happy someone read my post. :-)

Dani -

I have Pandysautonomia, maybe something else going on, im getting worse not better, but i stay positive.

Arizona girl -

I had 6 months worth of treatment then he stopped the treatment cause it wasnt working as well as he wanted. I see the neurologist on wednesday next week and i'm going to ask him about my health status and any other treatments or experimental treatments worth trying.

I'm very interested in getting my metabolic profile done, as i'm small but need to lose a bit of weight but its hard at the moment. Who would i see to go about getting one done?

[Sallysblooms]

If you have a doctor that knows about supplements, you can get a lot of immune building that way. A knowlegeable doctor can help with the best brands and doses. Maitake D Mushroom drops are wonderful, AHCC which is another mushroom product is also good. Astragalus, vit E, C, etc.

[juliegee]

Hey PG-

Have you had your immunoglobulins checked and a CBC recently? Sometimes blood work holds the clue as to why we keep getting sick...IVIG is one potential treatment & I hear you've already tried that. Eating properly and using supplements wisely is another great step.

I have chronic hypogammaglobulinemia- low IgG, around 475 last check (750-1,500 is normal.) My IgA is intermittently low as are my white blood cells (leukopenia.) I have resisted IVIG as I am afraid i will have an allergic reaction beacuse I have MCAD. Out of curiosity, how did you react to the infucions? My current rheumy recommends IVIG injections as opposed to infusions. Any knowledge of this? I get a sore throat, ear ache, and chronic sinusitis when I am tired especially. When I am well rested i feel better.

I hope you get answers and better treatment recommendations from your neurologist.

Julie

[janelle]

I'll check out those supplements, thankyou sallysblooms. I take a supplement/vitamin drink and i see a dietion now to help me eat regularly and im open to trying anything.

Im going to a accupuncturist/chinease herbalist tonight, should be very helpful, i've never been to one before so im a bit nervous and excited.

Julie,

I get that runny nose and cold like symptoms when im tired as well then i rest and im a bit better, is that something that happens with us dysautonomics?

My treatment always began in the ward with infusion nurses hooking me up, waiting for my reaction to stabelize, very runny nose, heavy chest, lots of sneezing and nose blowing and small blood pressure drop and a bit of coughing, then im good to sit it out for the arvo. i rest for a couple of days cause it takes alot out of me then i got slight improvement for about a week then down hill i went. I'd go through it again just to get a weeks worth of slight relief at the moment.

I had a recent full blood count and it was ok, except my ferritin level(80) in normal limits but they had dropped two hundred points which is average for me as i cant hold onto iron stores.

janelle

[sue1234]

For some odd reason, I have a REMARKABLE immune system. I have literally had one cold in the last 15 years(and it progressed to a full sinus infection). I have also had two bladder infections in that time frame. And that's it. If I wouldn't have POTS, I would be doing wonderful!

To tell you the truth, I would rather be normal without POTS, and have my average number of colds per year, if I could choose!

[lgtaylor100]

Sue, is your POTS caused by an autoimmune disorder? I think mine is and I always wonder if I get fewer colds, sore throats,etc. because my immune system is working overtime.

[Neshema1]

Pandy

I'm another pandysautonomia person & my WBC is almost nonexistent, making me very susceptible to infection. In fact, I recently was hospitalized for almost a week with a fever of 102. This had happened twice recently. As my fever improved, my WBC got lower. It could be from autoimmune disease, which I also have, but they treat me with immune suppressants & I can't be back on tx until my WBC goes back up to minimally acceptable range. I have hypovolemia but that really affects my red blood cells. So, I also wonder what's going on, but I have a lot of weird levels of various things. The blood count and immune stuff concerns me. I really have to avoid sick ppl because getting a cold or fever is pretty devastating. Hope u improve soon. I have no answers but wanted to share.