I'm Back!!!!

I'm finally back!! Wow, what a lonnggg drive. I had a GREAT visit with this new doctor. He is VERY smart. I was impressed. He answered all of my questions and knew what he was talking about. He was very patient with me and had a great bed side manner. His nurses were the sweetest things. You can tell they care.

Anyway, here's the plan....

I will start on Diflucan for a week to get rid of the yeast, then he wants me to start Levaquin for Bartonella for a month. I will start off at a low dose and work my way up. After the Levaquin is done, I will get a picc line inserted and start Rocephin. He was concerned about me being on the Depo shot because it thickens the blood so he's putting me on a low dose of coumadin to thin the blood out a little. He is also going to make me pulse flagyl while on the Rocephin. He's is checking me again for Babesia but told me that he would still treat me if it's negative.

I really like his game plan. My last LLMD had me on all of this medication at once. I like that I am doing things slowly. I feel really good about everything.

I also got to meet others there that had Lyme and had also traveled like me. One was from Canada! It's was really nice to finally have someone understand what I was going through.

I didn't get to get out and go anywhere because I felt so bad. I was a little upset about that but my husband told me not to worry, that I could try the next time we went back.

Anyway, that's about it. I hope everyone is doing good today:) I missed all of you and this forum!

Good news CG, sounds like a plan. So glad you could find a doctor to help you, maybe I need to go to Florida after all. Take care, good luck with the new protocal.   D

Hey everyone.....thanks!


Jelaine: Yes, this is Dr. C in Tampa. I love him!

so glad to hear all went well. I know you will keep us posted...

question for you though...have you ever had incidents of 'blacking' out? Saturday I blacked out/passed out suddenly. I don't remember anything that happened. I was told by girlfriends I 'disappeared' from our group without telling anyone anything (which is NOT like me). I was sweating profusely and mostly unresponsive. Mumbling but could not form audible words. Completely dead weight and then was like I was just 'asleep'. Heart rate and breathing appeared normal. They thought maybe I just had 1 to many glasses of wine (only had 3 small glasses of wine in a 2.5 hour period) and not enough to eat - NOT. They took me home, put on my PJs, and put me in bed. Blacked out appx 8:30pm. DO NOT REMEMBER ANYTHING! I slept from appx 8:30pm until 5:30am the next morning. Woke up crying and extremely upset because I couldn't remember anything! For several hours that morning I felt strange - almost 'out of body' type experience. Later during shower I found a large bump on the top of my head and injury to my right ankle (from a fall when I blacked out?) No one knows.
I have been back to regular physician this morning and have been 'shaky', nervous, feverish, left elbow killing me, not myself all morning. I felt like I have been having some sort of panic attack. Uncontrollable crying since 8:30 this morning. They took blood to test Thyroid, white count, testing for Lupus also. Trying to get me in today for a CT brain scan.

Turned out to be an MRI which they say late today is normal but want me to go to nuerology for EEG asap to see if any seizure activity.

 Any thoughts or similar experiences?

Post Edited (Lymeymom) : 9/9/2009 7:57:05 PM (GMT-6)

Does Dr C let you do the picc line meds from home? Or do you have to go there and stay?

Turquoise:- Thanks so much hun:)

Lyme:- LOL about doing chores! I'm actually looking forward to that now. I never thought I'd ever say that. Haha!

SickOfLyme:- Yes, Dr. C. lets you do the picc line meds from home. A home health nurse comes to your house every week to check the site and draw blood.

Hi CG!

That's really great news. I'm so happy for you! Out of curiosity, do you know where in Canada the Canadian was from?

CajunGrl,

Glad to hear everything went well!  Let us know how you're doing.  I don't remember ever seeing what your symptoms are, you should put them in a "signature" for your post.

Take Care, KO

 

VIEW IMAGE  Cajun Girl, glad to hear about your experience at the doc.  Good luck with the new regimen!   Isn't it great to talk to a doctor who understands and is proficient at treatment?  It does so much for your health before you even take any medicine, doesn't it?  Congrats!

P.S. I've had a PICC in since mid-June, and it's become part of me.  The most frustrating thing is taking showers/baths without getting it wet, but I got some good info from this site about it, and I am quite happy with the mid-arm protector that I ordered from Brown's Medical supply. No leaks! No worries!VIEW IMAGE

CajunGrl, I am glad your appointment went well.  Be aware of the possible tendon pain side effect of Levaquin.  If you experience it or think you may be experiencing it, call your doctor pronto.

Good luck with your protocol!

Thanks Cajungirl and Traveler for your responses.

Cajungirl I know you will keep us posted on your treatment and progress...so exciting to hear you like the doctor and may finally begin to feel better!!

I have one positive Lyme test from Labcorp 8/7/9 (and nearly all the symptoms) but more results from additional tests and a different lab are expected tomorrow or next Monday. The tests taken 9/2/9 for liver dysfunction, arthritis, and rheumatoid arthritis are all negative.

Which co-infection could cause the loss of consciousness? do you know? My girlfriends thought low blood sugar also, but that has been tested recently and several times in the past and was always good. Retested yesterday and also waiting for results hopefully tomorrow. I have had a few similar episodes of 'passing out' in the past (2 prior to the tick bite) - one in 1991 and one in 2007 however, I either never totally lost consciousness and/or was able to remember the episodes. This last one was like a complete 'black out'. My Mom has an idea that it's cause is something else unknown and maybe the Lyme 'triggered' this?

I was biten 8/2008 - believe symptoms started gradually in appx 10/8 and 11/8 and have gotten progressively worse. Really got bad in mid 6/09 and by 7/09 I was 'getting lost' and 'forgetting', experiencing confusion/major memory problems, going to the wrong places etc. I 've had several 'out of body' experiences since 7/09 and I don't like any of it - very scary. I have also had what I believe to be true 'panic attacks' - one in July and one just yesterday.

I will keep you all posted on the latest results as I get them.
Thanks so much for listening, responding, and giving your input.

I meant to ask everyone....how long since your bite until diagnosis?

Cleo,

Haha! You are funny!

Yep, I'll be doing IV Rocephin and pulsing flagyl too. How long have you been on the IV antibiotics? Does the picc line cover still work well?

Hey McJane!

Thanks! How have you been? What are your doctors going to do about the cancer?