Autoimmune And Bacterial Cause Of Dysautonomia?

[kluesyk]

I strongly feel that there is a component of autoimmunity and possibly a bacterial cause of my POTS, shortness of breath and muscle weakness.

I know from past experience if I receive a steriod shot (kenalog/celstone) that I have a DRAMATIC improvement of my symptoms for about 2 1/2 weeks. It is much more than "Oh the steriod shots made you feel better" it is the fix for the problem. Unfortunately one cannot live on steriod shots because of the side effects.....in my case after two steriod shots I broke out with Shingles last summer.

I also tested positive for a chronic mycoplasm pnuemonia infection last summer and have been on low dose Azithromycin which has all but eliminated my shortness of breath and coughing. My plasma Co2 levels also went down...they were too high before.

I had to ask the doctor to test for this because I noticed a big improvement when given a 5-day dose of Azithromycin for an uppper respiratory infection I had.

Just wondered if anyone else had similair experiences and what are you doing? Did you find a steriod that helped that would not cause such side effects?

I do also have adrenal insufficiency and Hashimoto's thyroiditis which compounds the problem. I for some strange reason require twice the normal replacement dose of cortisol just to keep me out of the hospital with adrenal crisis.

Anyone know of any research that is going on about this?

[Yolaclover]

I just wish that Drs would try different things to help us. i can't help but feel that they shrug their shoulders, give us some midodrine, florinef and say they'll see us in 6 months.

[kluesyk]

That is exactly what happened with a new doctor I just saw. He said "My you have had lots of testing", then proceeded to order MORE testing(same as what I just gave him copies of) and said see you in 6 weeks...did not help me at all. So frustrating.

[sue1234]

I sure wish they would ramp up the research on causes, etc. to POTS. It's a good thing you noticed the connection between the antibiotic and respiratory issues.

When you mention a bacterial cause of dysautonomia, do you mean that the antibiotic has helped you in more ways than just the respiratory problem?

[kluesyk]

Yes, in the beginning of the antibiotic therapy I had a decrease of the POTS symptoms, too, but over time it seemed the antibiotic did not help anymore with that.

Just makes me wonder if anyone had ever investigated the connection.

My thoughts are if a bacterial or viral stress is occuring in our bodies, perhaps that sets off an autoimmune response in some individuals which can cause the dysautonomia.

Just my thoughts....

[lieze]

I've noticed a decrease in POTS like symptoms right after getting over any type of cold or virus. Something about kicking my immune system into gear to fight the virus also minimizes the POTS symptoms or makes me less aware of them. I've noticed it several times now just coming out of a virus. Usually you're wiped out I'm not I notice increased energy...and an almost normal feeling body. Then I go back to my not so normal normal and it's like blah-I feel like poo again.

[kluesyk]

Yes, the best I have felt since this all started has been after I had a hysterectomy....I felt really good for about 8 weeks.

Wonder if the immune system was diverted for a while.

[Dizzysillyak]

Hi,

I was wondering about this too. I always have blood in my urine and UTI symptoms UNLESS I take AZO w probiotics regularly.

It seems I'm always fighting an infection ...

I've never tried steroids other than pregnenlone and DHEA but maybe my dosage is too low. I'm at 10 mg preg and 5 mg DHEA .. these are natural steroids that our bodies produce. Mine were tested and found to be low. I'm going to increase my dose to see if it helps ...

I make a tea with olive leaves, pau d arco, cloves and elderberry that makes me feel more energized too but I've gotten lazy about drinking it. I've met a few people who say that GSE has helped them.

With all the current research on bacteria I wonder what they'll find when they look closer at this.... d

[icesktr189]

I also think it is immune system related. Probably why some of us felt a lot better during pregnancies. (lowered immune system) LDN did seem to help me but it gave me insomnia :{

[Guest tearose]

I became worse on a trial of steroids.

They don't know what causes dysautonomia and the side effects of drugs, surgery and experimental interventions can have dangerous, life altering consequences. We only have one body and we have to live or suffer with the consequences if the experiments/drug trials, didn't help us.

I am done being the test victim of new treatments and trials of experiments!

I nearly died trying to improve my condition.

After doing pelvic reconstruction to try and help myself and gain the abdominal/pelvic strength, I needed two blood transfusions and six months of recovery including occupational therapy!

The worse part is that now, years later, I am suffering even more from the damage from the surgery that was suppose to improve me!!!

[RockiesGirl]

I think there is definately a 'link' here. I've written about this before, but here goes again. When I was 35 (I'm 39 now) I developed a low grade fever 99.8-102.3 that lasted over a period of 7 mos. I attributed it to many minor surgeries because I had cervical/uterine cancer.... they kept testing (biopsy, deep biopsy, Leep etc.) and it had spread into my uterus. Anyway I felt awful and my OB/Gyn said it wasn't the cervical issues causing my fever & sent me to GP. After several tests...they couldn't figure it out. Finally had a hysterectomy. After 6-7 weeks ended up in the hospital with a temp. over 103, hospitalized for 8 days with an Abcess, which required massive quantaties of antibiotics.

Now I know that our bodies have a hard time regulating temperature but I still get a fever of up to 101.2 some days. I have told my Docs about this and they shrug it off?? But it makes me feel just awful enough

BUT strangely enough the last 4 day hospital visit 6 mos ago, when I felt my absolute worst (besides the abcess) my temp. was way below normal 94.6??? I started to feel better as my temp rose and when I left the hospital it was 99.8??

Might also want to add that they have tested my Immunoglobulins & they are all over the board??

I don't pretend to understand this Just wish the Docs would focus a little more on this.

[Dizzysillyak]

Hi again,

It occurred to me last week that I've never sanitized my kitchen with bleach. I've been using anti-bacterial Dawn, super hot water and/or a dishwasher but I don't think it was enough. I even had two small indoor dogs and this didn't occur to me ... duh ..

Here's an article on this ..

http://blog.healthychoicenaturals.com/the-top-spots-for-germs-and-bacteria-lurking-in-your-home/

btw. I've tried using straight white vinegar on black mold on my patio stones and it didn't do anything. BUT when I poured Clorox bleach on the mold, it sizzled and then vanished. So I'm sticking with Clorox bleach. Other bleach brands never worked as well either.

This is my latest project. Basically, I read that you should wash your dishes in hot soapy water, rinse and then do a minimum 1 minute soak in water + clorox (1 capful per gal or was that a sinkfull of water ? )... dry and put away ..

So far, I was shocked to see how clean my Ziploc plastic storage containers could be.

BTW. This epiphany came about when talking to a freind of mine about soaking nuts and seeds prior to eating them. Mine always tasted sour but like an idiot I didn't connect the dots ..

Well I soaked some sunflower seeds after cleaning my dishes with bleach and guess what ? No sour smell ..

I can be soooo thick sometimes ... lol ... tc ... x

[lieze]

If I ever get energy I will be a clean freak.

Right now I just don't have it in me...

I know my carpets all need cleaning...

I never had the toenail fungus issues til we moved in our house in the country...it made me wonder. I always cleaned the showe good but it still looked nasty...we finally replaced it but after moving in there we'd get the runs off and on with no warning sometimes so severe that it just came right out without warning.

A coworker I worked with also lives in the country same problem...they'd get the runs...her husband passed out and she has run fevers and had balance issues like hurts herself all the time. It just doesn't seem normal.

Their son also had a bout of very high heart rates.

It just makes me wonder if it's something environmental making us sick and affecting our nervous systems.

A coworker at work's 20 year old granddaughter died of a heart attack, another coworker's cousin who was very young had a stroke and another's husband had slurred speech and neuro symptoms just out of the blue...like he'd has a stroke...

It's just weird. Maybe this stuff has always gone on?

I don't know.