Haven't heard anything from you in since just after the hospital experience.

Hope you are OK.

xx,

You ok?

We are thinking about you!

Please lettuce no!

You are so thoughtful and I am touched by your post. It means the world to me.

Because no good deed goes unpunished, I'm gonna reply!!

Hi Minoucutie & TC-guess you're gluttons for punishment too.

I"m sorry for lack of participation. Have not been on board at all. Hurts too much, dizzy, nausea.

Hope YOU are all doing well. Always love and prayers for you.

So, here's the update (hey, you asked):

Still can't get it together and feel lousy. Am chasing help as fast as I can manage. Getting help with kidlets.

TC- you will appreciate- EVERY FOLLOW UP MD REALLY MAD at ER duck motel!! Very bad care and should not have released me.

They never did mri/spinal or called hospital neuro. Even lost records for hospital neuro! thought maybe severe migraine and bad virus. maybe I had seizures? cuz they had me on dilantin. also morphine, steroids and antinauseas.

Still have symptoms but headache now just dull and have stopped vomiting and can see again. Yay!! Still dizzy, hate light, sound, nauseated, mixed up, can't drive, exhausted, sweats, ears ringing, and lost a lot of hearing-Damn.

Everything going haywire- oral infection, oral herpes and nasty yeast infection that started prior to abx.

Since hospital:

*Dr.P (initial consult): said meningitis and tried to get me into see Dr.K stat. Dr. P put me on peditric dose of ceftx til I see Dr.K -afaid of neuro herx. (already have igenex +s)

*Quest w/scrip- 15 vials!!!

*PCP appt,Pcp went a bit postal- thought stroke or meningitis, screamed at ME -that helped the general misery/headache/noise sensitivity a lot btw-set up ER MRI. More blood draws.

*MRI- nearly killed myself and others by trying to drive. (And not to sound too "Rainman", I'm usually an excellent driver/navigator.) Also got lost and started crying again-

(Yes-will take taxis/get rides)

*Neuro appt: said meningitis and get this----thinks lyme! RECOMMENDED GO SEE DR K!!!

*Emergency gyno for bleeding yeast infection. Diflucan and topical abx and lidocaine for pain.

Also discovered that my idea that having lots of periods every month being just part of perimenopause is apparently WRONG. what a moron I am. My mom had uterine cancer at 35, later breast cancer and died from ovarian. Gyno set up stat endo biopsy.

*Dr.K FINALLY calls back..sheesh.. Thought "andie" was my son and was confused by flurry of messages from drs. ?????

So:

Endo biopsy Mon. am

Dr.K mon pm,

Spinal Tues.

Yummy!

Can't wait for next week as you can imagine since this has been so fun. Am going to take meds, "rinse", spray lidocaine, briefly scream and hit the hay.

LOVE YOU GUYS.

andie

My sweet angel. Thank you for your note.

Yes, I've gotten myself into a fine mess here, haven't I? I feel ok this am and am grateful for that and taking advantage of it.

But more important, how are YOU?

It is so like you to be thinking of others in the midst of your own grief.

I think about you every day and Julie also sends her love and concern. She is so shocked and sad about your loss and everything you must be going through.

She still talks about meeting you at Dr. Js and what a special, kind lady you are.

Now that the services are past, I imagine you have some quiet time. After so many people in the house, it can be a bit of a relief to have some time to yourself, right?

Gives you a chance to just breathe and be sad. A time of grace and wisdom.

I hope you are not too burdened with administrative tasks and that you have help for those if need be.

Also sending my thoughts to your daughter and Thomas and the whole family.

Please know that no matter how many days go by, we're still thinking of you and sending hugs and prayers.

love,
andie, JC & Julie

Friends like you have given us so much support. Like they say, when tragedy strikes, it's your faith, family & friends that get you through.

About the administrative duties with the estate -
I'm fortunate that my oldest son is in charge. ElderLaw is his firm's specialty, so we're in good hands.
He & I are the Personal Representatives (used to be called Executors) so I have some things to do, but he has almost all of the responsibility. Takes a load off me.

Thanks again for such kind words & for your support.

So good to see you back. I missed you.. so did many others.

Actually we NEED you too! It just isn't the same around here when you aren't on board.

And please know you've been in my prayers.

Andie, et al...

Sounds like you've been rode hard and put away wet!

Is there anything on you that doesn't hurt or act stupid?

Guess that is a dumb question??

How about this..

What can we do to help make you better faster?

We will surely try!

Feel better soon little baboon!

I'm sure you feel like crap, are frustrated, tired and angry witht the drs. As a fellow lyme person - I know how strong you are - it comes with the territory. I know the tough spot you are in because two years ago I was released 4x before they finally did a spinal tap (upon my insistance) to catch meningitis and last May they released me from the hospital with Guillan-barre syndrome (I had become completely paralyzed, but they thought I was faking even though I couldn't walk). I called to make complaints, but no one ever called me back. Makes me sick.

I will look forward to hearing about your test results. Hope that you have helpe with the kids after tap on Tuesday. Wishing you good health
paisley

Cbb,
Again, I'm sorry to hear of your loss. I've been thinking of you as well and hoping that you have some brief moments of peace. Again, for not knowing you, my heart aches for you. I lost my father in October and the grief is more than I could imagine, so I have such compassion and I pray for your strength and health as well.

What to say..

Right now, I think, it's all about getting through the next few days one at a time.

I'm really glad you have help with those sweeties..you have a fine mind beneath the Lyme boogies..
it's focus needs to be on you and what the good Docs see.

Doc K is brilliant with Lyme brains..

Doc P has you cradled in taking the right steps now.

The spinal will be fine..you just need the laying down time after to be sure you don't get the headache.

Do Docs K and P want it done? They both are fully aware the yeild of positive Lyme testing in CSF is low (like 10-15%), but they check other levels as indicators diagnostically.

Doc K will hopefully order a SPECT or PET with the battery..they show hypoperfusion, which doesn't show on the MRI and spinal.. but is significant. Doc K reads the scans done at Mislesex.
Insurance and non-LL's lean too hard on detecting Lyme in CSF..and draw innacurate conclusions.
The LL's know how to interpret all these tests together.

Doc J has his own brand of advise on post spinal laying position, feels you should lay on your stomach (or side), not the back..don't know of you'll talk to him, but do what feels right.
I suggest making sure you have a ride home in a flat position..seats down, whatever.
DH can always strap you to the roof
It's important to take precautions against the headache.

Bad ER Ducks!!..throw em some crackers and be on your way. Seeeee ya..

Good neuro..glad to hear he knows the guy to see. Gotta love a guy who knows he does not know.

You're PCP yelled at you?! Oy. I'm sure she is scared of what she doesn't know, probably even reacted to being really worried about this case. Some Docs are somewhat aware that a number of their patients are suffering severe symptoms and they don't have the tools to help..no excuses, though, just a thought.

Good luck on your appt with Doc K tomorrow.
He really is the very best at these initial asesments. Doc P will be able to pick up from there, no doubt.

No driving..too upsetting when you can't find your way back from the mailbox ..you have enough to worry about!

We're all here as your safety net.

Doc K better take his very best care of you, or I'll go down there and give him such a pinch

xxx,

Mo