ariella

believe it or not, computer was down again--this time the monitor. Just want to say that just because I've been out of touch, you guys are still in my thoughts. Generally doing much better on lyme treatment. Finally got over significant trouble in starting the antibiotics, including seizures. I am walking MUCH better. POTS MUCH better (but not totally gone). Still very difficult breathing. So, hello to all! Ariella

Any idea if you have an underlying condition causing the POTS?

hi I just flew 11 hours each way. How long is your trip? I had oxygen on the plane, which helped a lot (could not have done it without the oxygen). The flight back had more turbulance, so it made the POTS worse. It was very tiring, so it may be good to plan some down time into the schedule. Enjoy!

had I not been persistant, I would have still been undiagnosed. Persistance is difficult when one is sick. My POTS doc told me that autonomic stuff is a separate and complex field of expertise, and no, neuros and cardios are not routinely trained to deal with it. Have had to educate more than one neuro, and my cardio seems to think it's no big deal to have POTS, just a little annoying syndrome. Now that I have been dx, it has helped my family doctor with other patients. Every so often I will get a call from my PCP's office, asking how they can get in touch with my POTS doc (they finally realized the number is in my chart!) But I know that my experience has educated them to be able to direct someone else.

just got the results today. problem is we no longer live in the US, and there is no one here familiar with treating or officially dx lyme. I had to fly into NY for a consult for myself. My kids will be in the US next week for a family wedding, so I'm trying to set up an appointment with a lyme pediatrician somewhere. Gosh this is expensive! What would be interesting is to see if my youngest has antibodies. She is the only one who couldn't have gotten her "own" infection because she was born after weleft the US. I only tested the 3 symptomatic children. Did not test the two others, or my husband. Feeling a little overwhelmed. What will I do with a teenager who just started high school with a neuro-lyme herx? Grateful we caught this, though.

so, my hunch was right. Being that I'm pos for lyme, I checked 3 of my children who also seem symptomatic of something as of yet undefined. All 3 positive. Apparently it can be transferred in-utero. (although it is possible they got their very own infections. Never saw a tick on any of them despite being in a highly endemic area.) Gonna be a long year! Ariella

don't know about the pneumonia shot (but did have pneumonia last year!), but I strongly advise any lymies or possible lymies to speak with your doctor beforehand. I had a major exacerbation that lasted a long time following the flu shot last year. Now that I know I have lyme, I've been reading that those with the infection are advised against, for this very reason.

thanks for the post Ariella

so happy for you! congratulations! Ariella ps-you're inspiring me to think about going back to school as well.

I've been known to say "sometimes you have to live a little even if it kills you" at least it was for a good cause. feel better soon. hey, at least eyes and kidneys are things the doctors are used to treating.... all the best Ariella

Dizzy, Have you had you potassium levels checked? I just looked at a link about diamox, and it said that it can cause real problems if your potassuium levels are low. You may want to check online about other possible drug interactions, from experience I wouldn't rely on my doctor to remember what I am taking. Be safe, Ariella

sorry you are going through this. When "friends" don't support us, well, it's hurtful, but you're not stuck with them. Does she have some other gripe against you that she is using this as an excuse to ridicule you? No one needs to accept abuse from anyone. I wouldn't bother trying to educate her. It probably won't work, and be perceived by her as you grovelling for her acceptance. Even if it her accusations were true, for someone to come along and make you feel worthless and invalid is abusive. I would try to keep distance. I hope this didn't come out as too strong, just really feeling your pain now. Ariella

unbelievable...but really too believable almost surprised they didn't insist there is no reason you can't drive... your new plan sounds good. hope it works. thinking of you Ariella

had a HORRIBLE reaction last year that nearly landed me in the ER. Severe muscle weakness including breathing. Turns out that many lymies can't handle a flu shot (didn't know I had it when I did the shot). So those potsy lymies out there, please consult an educated doc out there before trying this at home!!

Grateful they were able to handle the sepsis...gosh, that's really dangerous. You've come this far to tell the tale, you'll be sticking around a lot longer too! Time to buy stock in gatorade luv, ariella