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DancingLight...


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THANK YOU ALL FOR THINKING ABOUT ME...

Melissa is going to post for me and give you all an update...things are super duper rough.

I am finding it hard to believe we are back to me feeling as bad and as sick as I was after surgery a year ago. It's like really bad re-runs....:)

I am overwhelmed and humbled by your love and kindness in thinking about me and noticing my absence. I haven't even been able to log on and that makes me so very sad.

You are all, as always, in my thoughts and I miss you.

Okay....falling back over now...

Love, Em

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oh em.. you poor dear!!

I am so sorry that you are feeling so bad.. I really wish there were something that somebody could do to help you!!

Sending lots of hugs your way..

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hi all -

sorry it took me a bit to chime in. i wanted to check with em first to see if she wanted me to post an update (as we'd emailed not long before this post started) & then i've been a bit boggled down the past few days. but...here goes.

most importantly, i know, em checked in herself to let you all know that she's hanging in....however tough it's been.

but to fill you in a bit more...Emily/Dancinglight has been having a super rough time, likely related to the fact that she did start on antibiotics for lyme treatment. she REALLY tried to stick it out but after consult with her POTS doc & Lyme doc & a day at the ER due to dehydration :) she had to stop them earlier this week in hopes that she can at least get back to being able to stay better hydrated. the home IV folks haven't been able to get access so likely there will be more ER trips to try and get things settled down.

even before trying the antibiotics she and her POTS doc have been (understandibly!) frustrated with the lack of help that various treatments have been. while he's used to the challenges of dysautonomia he is also used to most of his patients having at least some improvement from something that he & em have tried.

so....bottom line for now is that the try on the antibiotics didn't go so well. em's limited energy/upright time/ computer time became even more limited than her recent "normal"...more and more so...which is why she hasn't been around on the forum. she has been able to brouse occassionally on the forum or check/write an email here or there but not much at all.

in terms of where to go from here treatment-wiseplans for going forward are a bit unknown at this point but for now things just have to get more stabilized.

WE LOVE YOU EM!

keep on keepin on...somehow things are going to take a turn for the better one of these days....

:D melissa

p.s. if anyone is super confused or has other questions feel free to PM/email me & i can fill in/ clarify as best as i can...

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Thanks so much for the update Melissa...I was really getting worried.

Em,

I know you don't have a lot of energy right now and things seem really "dark"...

Just know that you are in my thoughts and even though things are tough I KNOW that you will get through this....hang on hon...better days are coming.

Sending lots of love and ((((hugs)))) your way..

Michele

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Oh Em,

I am so sorry to hear about this. I pray that you and your doc will find the best course of action to get you back on track and to keep you hydrated. We're all here for you. Take it easy and rest. I'm sending positive thoughts and healing energy your way! :)

Hugs,

Gena

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Em, I kept looking for you on the forum. I am so so sorry that you are not doing well with the lyme treatment. Were you taking Roceptin? I tried that at home but we could never keep the access vein open. Have you tried doxiciclan? That may be easier on your system.

I miss you. Hugs of support and hope!

Lois

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Hey Em!

Just want you to know I think about you a lot and I'm sending well wishes your way. I can only imagine the frustration you feel!!!

I hope you are surrounded by support locally and I hope you know how much you are loved and missed here on the boards.

We're all rootin for you!

Take care of yourself the best you can.

I'm sending you a BIG ((((HUG)))) :)

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