Antibiotics Make Me Feel Better

[Lenna]

What I'm hearing from all of you is that you feel better while you're on the antibiotics, but go back to your baseline once you're off them? Is that right?

[juliegee]

Not necessarily. If an underlying infection/inflammation exacerbated/caused the dysautonomia, once that's been addressed there could be a cure or improvement in autonomic symptoms. I know "a cure" sounds dramatic, but that's what Dr. Peter Rowe from Hopkins, reports seeing among his patients. My son, Mack (and I) have experienced some improvement, but no cure. We greatly appreciate the opportunity to have tried it.

Julie

[Dizzysillyak]

Good question. I asked Dr Peter Rowe (his doctor) about IV antibiotics, especially if this is a chronic Lyme thing. He said that Mack's symptoms weren't THAT severe, so IV antibiotics would be overkill. Mack's taking 50 mg of minocycline twice daily for 6 months.

I am getting OI (and other symptom) improvement from only 50 mg of doxycycline daily. It seems wise to use the lowest dosage that offers a benefit, especially if a patient was to continue on a long term basis.

Keep in mind that this treatment is highly experimental. Docs don't know why this helps or (in most cases) what infection they are fighting. Too many patients have shown incidental OI improvement after antibiotic therapy to ignore this development. I feel lucky that my son's doc is willing to think outside of the box and try anything that will help.

I don't feel the need to defend this and won't comment further, just sharing our story.

Thanks for sharing this ... My doc was interested in this and suggested I try olive tree leaf for now.

You gotta love doctors who think outside the box ...

BTW. I hope I didn't make you feel defensive either. I get the feeling I come accross that way sometimes and I certainly don't mean too. Sometimes my cognitive problems from the lack of blood in my brain makes it difficult for me sit up much less express myself. Verbalizing while I'm standing and trying my best to think straight is a real challenge ..

[Dizzysillyak]

Well the honeymoon is over as they say. Today was just awful as far as heart rates go.

Oh well at least I had a little break and felt normal for a few days!

Dana,

Sorry to hear this. I was rooting for you ...

I had a couple of thoughts. Were you taking probiotics too ? If not, candida or dysbiosis of another kind may be causing your flare. And you may be reacting to a food you ate. My worst ever episode of my heart pounding and feeling like I was going to jump out of my skin was from eating GF cinamon Rice Chex. I NEVER eat processed foods like that so I'm not sure exactly what it was. It only lasted a couple of hours and seemed to respond to drinking some beef broth (the thick stuff made from boiling beef bones with marrow) ...

I think we may be onto something here though ... tc ... Marcia

[Birdlady]

The past few days have been pretty bad and I am still on the antibiotics and probiotics. I eat the same foods and never eat out so I highly doubt that a food was causing any problems. I wasn't having stomach problems. Just my usual crazy heart rates upon standing.

The difference for me is that I have no visible signs of infection. I never get sick, I never run a fever and generally feel pretty good (except for the high heart rates), so that's why this was really odd for me.

Even though I don't feel as good now, I still think there's something to this!

[nmorgen]

I know this is an older post but I thought you might be interested in this article. http://www.everydayhealth.com/healthy-livi...anscript-1.aspx It's really spread out b/c it's an interview, but I didn't realize how ineffective the tests were for Lyme disease. They tested me at Mayo, but I don't know which test they used. I know I have been bitten by ticks. I have pulled them off.

I unlike all of you feel absolutely horrible on antibiotics. I hate getting a UTI or any other infection b/c the antibiotics make me feel so bad. I know it could be the infection itself, but shortly after taking the antibiotic I feel really bad and my POTS gets worse. They told me that I have the hyperadrenergic POTS and was wondering if anyone else with this type of POTS actually feels better on antibiotics.