Dizzy Dame Posted September 13, 2006 Report Share Posted September 13, 2006 Hi guys,I went to see my PCP today to discuss the lyme test results and such. In the end we decided that since starting antibiotics is a bit risky, that I'd go see a lyme specialist down in North Carolina to see what he had to say about things. I think at this point all of my symptoms mean that I have POTS+NMH and some other kind of peripherial neuropathy but no one can figure out what's causing it. Given that I have chronic fevers and have many memories of being bitten by ticks, lyme or some other pathogen seems our only option (as we've pretty much ruled out mito disease and any other disease that could explain all of my symptoms). I guess I'm a little scared because if this physician in NC can't help me, then I'm kind of out of options. The next step would be to treat this as an autoimmune process...but the treatments for that are invasive and come with thier own set of complications. So that's what's going on. I'm so glad I have all of you to talk about this with. Otherwise I'd feel so alone in all of this. I'm just praying right now that I get an answer...hopefully it'll be something treatable. -Lauren Quote Link to comment Share on other sites More sharing options...
persephone Posted September 13, 2006 Report Share Posted September 13, 2006 Hey Lauren, Keep the faith! I know that the underlying cause for my POTS- the EDS, isn't really treatable- EDS is just the way I'm made. Saying that, things could be a lot worse. But I hope you get the answers you're looking for.Lots of loveP- writing much more freely now! Quote Link to comment Share on other sites More sharing options...
AJVDK Posted September 13, 2006 Report Share Posted September 13, 2006 I hope you are able to find out some answers when you go to the LLMD. I know that doxy been a life saver for me, but there are many side effects that go along with it. I been on doxy now for about 60 days and its starting to really help. I am finally having a life. I hope you start feeling better soon! Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted September 14, 2006 Author Report Share Posted September 14, 2006 Thanks Persephone and AJVDK,Persephone, I'm glad you're writing again! Hopefully you won't get stuck anymore this term Part of me just wants to scream "JUST PUT ME ON ANTIBIOTICS!"...it's so frustrating having to wait knowing that if I do have lyme it's continuing to eat away at my ANS while I piddle around looking for answers...but the other part of me knows that patience is so important, and that I can't just start treating myself for a condition that I may not have. I need to KNOW that I have lyme before I start popping pills to kill it AJVDK, I'm so glad you're improving in antibiotics. I remember how sick you were before starting them. Listening to your story gives me hope that I too could recover!Hugs to you both, Lauren Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted September 14, 2006 Author Report Share Posted September 14, 2006 Well, I've made the appointment for the 3rd of October. Hopefully the drive down won't be too awful...although six hours in the car sounds like a nightmare to me.I'll let everyone know how that appointment goes!-Lauren Quote Link to comment Share on other sites More sharing options...
labas_2u@shaw.ca Posted September 14, 2006 Report Share Posted September 14, 2006 Hi Lauren Just wanted to wish you all the best.....Hopefully North Carolina can help you!Keep us postedMaggs Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted September 15, 2006 Author Report Share Posted September 15, 2006 Thanks Maggs! And even if he can't help me, at least I'll get to eat some good BBQ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.