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CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/9/2009 5:05 PM (GMT -6)   
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!
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


not again
Regular Member


Date Joined Jun 2008
Total Posts : 264
   Posted 9/9/2009 5:10 PM (GMT -6)   
Glad you had a safe trip!! Thats good that you liked your doctor. I hope your new game plan works for you. good luck

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 9/9/2009 5:11 PM (GMT -6)   
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

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 9/9/2009 5:32 PM (GMT -6)   
Was this Dr. C in Tampa?
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
10/01- Igenex and CDC LD positive
Rx's: Wellbutrin 300, Paxil 60, Xanax 5, Acidophilus, Invanz IV, possibly Gammaglobulin, Flagyl, HBOT  
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/9/2009 6:28 PM (GMT -6)   
Hey everyone.....thanks!


Jelaine: Yes, this is Dr. C in Tampa. I love him!
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 9/9/2009 7:11 PM (GMT -6)   
So glad that your trip and appt. went well! Hope your treatment works well too!

Lymeymom
Regular Member


Date Joined Aug 2009
Total Posts : 33
   Posted 9/9/2009 7:54 PM (GMT -6)   
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)


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 9/9/2009 8:07 PM (GMT -6)   
CG, AWESOME news! I'm so glad to hear from you and how good you felt about this Dr and everything else! Worst case scenario is that he will have you up and having to do chores before you know it!

Keep truckin, yer gonna make it!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
CD57= 60, so we're in pretty good shape.
 


sickof lyme
Regular Member


Date Joined Aug 2008
Total Posts : 110
   Posted 9/9/2009 8:07 PM (GMT -6)   
Does Dr C let you do the picc line meds from home? Or do you have to go there and stay?

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/9/2009 9:50 PM (GMT -6)   
Lymeymom,

I'm sorry that happened to you. I've felt like I had to pass out many times but never did. I was told this may be a co-infection causing this. I don't remember but do you have Lyme disease? If so, alcohol usually doesn't go well with Lyme Disease.

The only other thing that I can think of is low blood sugar. I feel real out of it and shaky when my sugar is low. That may also cause you to not remember. You should have that checked just to be on the safe side.

I'm glad you went to the doctor and are running tests. Let us know the outcome.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/9/2009 9:55 PM (GMT -6)   
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.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 9/9/2009 10:43 PM (GMT -6)   
Hey CG!!!!
When's the party????
So very happy for you to finally feel like there's going to be some progress!!
CONGRATS!!!!

Not to hi-jack this thread, but Lymiemommy

- I have had 2 experiences similar to what you described. Pretty scary for me too! I'm glad you didn't have any serious injuries directly related to the fall - I managed to give myself a mild concussion the last time.


I wish I had some answers to share with you - but I haven't found any yet. Of course working with that lovely lyme fog hasn't helped!!

The 'out of body' experience that you had I experienced as well - but those weren't the only times I've experienced them. As of yet, I have no explanation on that either - not even one I would just keep to myself!

I hope we both can find some answers!!
- Traveler
"Conditions": Lyme Disease (neuro, gastro, bone, brain, muscle, hearing involved), STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 9/9/2009 11:02 PM (GMT -6)   
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
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/10/2009 1:24 AM (GMT -6)   
Traveler:- Thanks hun:)

Nicky:- No, I don't know. I wish I could have talked to her more but they called her in for her appointment.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 9/10/2009 8:04 AM (GMT -6)   
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
 
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/10/2009 11:22 AM (GMT -6)   
I had everything in there at one time but it was too long, lol. Us Lymies don't have enough space for all of our problems. We have too many! lol

I will send you an email.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


cleo springs
Regular Member


Date Joined Aug 2009
Total Posts : 76
   Posted 9/10/2009 2:54 PM (GMT -6)   
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
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/10/2009 3:27 PM (GMT -6)   
Hey Cleo,

Yes! It is great to finally have someone understand. And hey, you just reminded me that I need to order a picc line cover.

How have you been?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 9/11/2009 9:19:34 PM (GMT-6)


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 9/10/2009 3:51 PM (GMT -6)   

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!


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/10/2009 4:00 PM (GMT -6)   
Thanks Ticker!
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Lymeymom
Regular Member


Date Joined Aug 2009
Total Posts : 33
   Posted 9/10/2009 5:33 PM (GMT -6)   
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 springs
Regular Member


Date Joined Aug 2009
Total Posts : 76
   Posted 9/11/2009 8:44 PM (GMT -6)   
Hi, Cajun Girl,  I've been okay, I am doing pulsed IV antibiotics (for 6 more weeks) , on 4 days/off 4 days, and the 4th day on (today!) is always a bit rough.  Feel like I've been hit by a truck.....the same one that hit me last week, then the week before that.....but I know that just means that the meds are working.   Ha, ha! 
 
Are you going to be doing rocephin, or another drug?  (I don't even know what other choices there are).   Glad you had a beneficial dr. visit!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/11/2009 9:22 PM (GMT -6)   
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?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 9/12/2009 12:21 AM (GMT -6)   
This doctor sounds wonderful. Cajun so nice to see you back....missed ya.

Jane

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/12/2009 3:39 PM (GMT -6)   
Hey McJane!

Thanks! How have you been? What are your doctors going to do about the cancer?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

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