Getting Better

[runningshoe]

I haven't been around in a while -many of the names here are new to me. But some of you old timers will remember me I hope. It is has been a tough year with my Lyme treatment - exhausting and hard on my body but I am getting a bit better. We will never know for sure if it was the Lyme that caused the POTS but I am down on my florinef and will now start decreasing my nadolol. My body doesn't seem to need as much of either. Too much florinef made my bp get too high and now my cardiac response to activity or standing is low so I can decrease the beta blocker. Don't hold your breath - chronic illness has its peaks and valleys, but this is the least amount of POTS meds I have been on in almost 3.5 years. The antibiotics make me tired and are hard on my IC bladder but I am hopeful.....

I hope all of you are staying cool and send you healing wishes.

Lina

[TXPOTS]

Lina,

I just want to thank you for stopping in with encouraging news. I am one of the newer members (diagnosed in December 2009, but sick since May 2008). This condition is so debilitating, but it helps immensely to hear from people who have gradually felt better and regained some functionality. Good news. I am happy for you.

[handmadebyemy]

Yay! Good news, I hope it continues for you.

[lieze]

That's great to hear!

Thanks for giving the rest of us hope.

Hang in there and good luck with your med reduction.

[runningshoe]

It is interesting to me that two of you who responded had a viral or bacterial condition prior to pots. Who knows what triggers this stuff but wouldn't it be great if we could identify the evil agents (for me lyme). I have been in the pits with pots and am sending everyone on this board well wishes!!

[lieze]

Yes I had two viruses within a short time span that both attack the nervous system so I guess it's no wonder. My nurse therapist thinks maybe this could be traced back to my West Nile Virus-based on another client she has and their experience with it.

She thinks maybe the symptoms were there but just not exacerbated until then I got chicken pox.

But I feel better too than I did so I am hopeful.

Still have times that I feel bad but they aren't as severe as they were at first and I have more good times than bad so I think that is all cause for hope!

I'll be happy to hear more of your progress-thanks again for bringing a ray of sunshine our way we really need it.

[MightyMouse]

Hello Lina, and yes, I do remember you. I'm so glad to hear that you've made some improvements over the years. That's awesome. I hope your journey continues to lead you to better health.

Nina

[flop]

Hi Lina,

it's great to hear that you are seeing improvement in your symptoms - keep it up

Flop

[potsgirl]

Hi Lina~

I remember you! I'm so glad to hear that you're feeling better and are off some of your meds. That's great! And thanks for sharing the hope with the rest of us. May you continue to recover and keep us informed.

Cheers,

Jana

[Dizzysillyak]

Congrats on your improvement and all your hard work ...

I had a viral onset to my CFS/ME/FM with orthostatic intolerance back in 1990 so I've been wondering about this too. My initial symptom of CFS was a re-occuring URI and extremely low body temp. I caught something in Jamaica in 1987 but don't think it was that. I have too many other issues that were there before.

I get a smelly drainage from my nose from time to time that I would best describe as fungal or bacterial. And my right ear gets a minor infection (itchy and watery) every week too that bubbles when I use peroxide in it. I just had some much needed dental work done in order to see if that would help but so far it hasn't. I've been treating the nasal drainage with olive tree leaf nasal spray but it hasn't helped yet.

I've been going through a really bad spell with my OI for the last couple of months. There were even a few days where I could barely stand at all. But most of the time, I could stand up but only for 15 - 60 minutes without feeling like my body was too weak to stand up. This was verified when I layed down and could feel my body collapse into the sofa. I'm almost back to my old OI where I have to lay down every 3 or 4 hours for an hour if I want to think ...

What appears to have helped me in the last week has been taking Virastop ... again ... I'd noticed several years ago that taking this 3 times a day made me feel stronger and reduce my need to eat as often. I'm hypoglycemic and a relatively newly diagnosed celiac so I need nutrition in order to function. My maintenance dose is one a day ... I suspect that the digestive enzymes are providing me some additional nutrition too.

I was taking this most of the time for the last 5 years but stopped at the advice of someone I trusted who said it wasn't a good idea to treat anything all the time. Granted that may be true and the fact that that I need to continually treat, may mean that I need something stronger. But IMHO, stopping this triggered my last bad spell of OI.

IF this is true, each of us will have to determine what type of fungus, virus or bacteria we're dealing with though ... Another CFS freind, who I trust, has recommended MMS. It cleared up an infection for her in a few days ... I'm sticking with the Virastop for now.

FWIW ... I took a Tyrosine and a Taurine an hour after writing this and was the Energizer Bunny for 12 hours ... Just wanted to let you know that I have no idea now what's causing my OI ...

[Rachel]

Hi Lina,

Thanks for checking in! It is good to hear from you again. I'm glad to hear that you have seen some improvements, and I hope that your health continues to improve for you.

All the best,

Rachel