Where do I begin? An update about me and me and more me since LD has made me VERY self-centered

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JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/13/2008 6:44 AM (GMT -6)   
I haven't been around for a while due to treatmeents and feeling like craapola, etc.
 
I recently finished 10 weeks of IV Rocephin plus other rx's.  At times I felt like I had more energy, but the energy still only lasted about 1-3 hours a day.
 
I think I had one bad herx, the night of the Democratic nomination.  My husband took a picture of me sitting in our bed.  I have an ice pack strapped to my head (by my robe tie) and another bag of ice on my left shoulder.  I'm holding my Rocephin IV ball against one of the ice packs because I was waiting for 9:00pm to start my IV.... and had to keep the medicine cold.  I have a towel on my head covering my right eye becaue I could not tolerate the light from the TV.  And, I'm tearing up over the Dem. nomination because I felt that history was being made in my lifetime and I was very emotional... that picture is probably one of 3 that have been taken of me in the past 8 years!
 
Anyway, after the IV stuff was over, my LLDr. looked at me and said, I'm going to start you on some new abx's.... "and you're going to get worse."  AAAAAAHHHHHHHHHAAAAAHHHHHHH - I said quietly to myself in my head - to my 2 remaining brain cells.
 
So, I finally bit the bullet (after 8 years of torture) and went to a Pain Management doctor (recommended by my LLDr) because if I was going to "get worse", I was going to be on pain drugs first.
 
I started the Levaquin and Rifampin yesterday.  The Lyrica prescribed by the pain dr. seems to be working... although I feel a little stoned and hung over (but in a fuzzy kinda good way - and NO headaches!).  The pain dr. also switched me off Restoril to Rozerem.  She said Restoril will knock you out, but it does not help provide quality sleep like Rozerem supposedly does.
 
I am slowly getting back to some assemblance of a life, but I can tell it's going to take more time (it always does).
 
As always I thank you guys for being here so I can dump a little and b%^$h a little....
 
I love emoticons, but we need one sitting on a toilet, one puking into a trash can while sitting on the toilet, and maybe one with a rash all over the face???? Just a few suggestions.  rolleyes rolleyes turn smilewinkgrin smhair wink turn rolleyes rolleyes
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08-WE'LL SEE - NEW!!! AND UPDATED!!! - turned out to be 10 weeks of IV Rocephin, my first visit to a Pain Management doctor - oops, but she was cool, non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  And, my abx's have changed again, just see below. 
NEW!!! AND UPDATED!!! - Current Rx's 08/25/08  11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Restoril 30mg Rozerem 8mg, Prevacid, Darvocet, Acidophilus, Flagyl 1500mg Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Urso 250mg, IV Rocephin 4 grams, Magnesium Chloride and/or Magnesium Oil - I need to order off the internet  I never did order that off the internet,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
The "I don't know how much more I can take of this", song - heard this one coming home from my LLDr's office on Halloween 10/31/08 - "Ain't found a way to kill me yet" - http://www.youtube.com/watch?v=5gHiR1xeOSs
 


bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 11/13/2008 7:30 AM (GMT -6)   
Hi,

I was looking at Rozerem because I had not heard of it before and I take Ambien 5mg and wondered if there was something better. What I read is

What other drugs will affect Rozerem?
Before taking Rozerem, tell your doctor if you are taking any of the following drugs:
fluvoxamine (Luvox);
rifampin (Rifadin, Rifater, Rifamate, Rimactane); or
an antifungal antibiotic such as ketoconazole (Nizoral).

Your pain management doctor may be aware of the above so it is not meant to make you panic. Heck - I have been on so many combinations and high enough dosages to kill an elephant and I am still here.

Take care - great imagery on election night.

1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 11/13/2008 12:19 PM (GMT -6)   
Hey Jennifer-
 
Glad to hear you are back amongst us.  I asked how you were doing, if anyone knew about a month ago...no answer.  So I am glad to hear you are still hanging in there!
 
How is Dr. C?  I have not seen him for a couple of months.  I see him again in Jan..  Thought I was doing much better...only on Diflucan right now...off all other abx's since June.
 
Then this week not so good.  Alot of aches and light-headedness.  Not sure if it is relapse, or something else.  Another wonderful thing to ponder with this disease!
 
Anyway, stuck myself back on my old abx therapy last night and we will see if I feel any different.
 
Hang in there, he had me on the same abx combo as you are on...but only for 3 weeks.  I did not test positive for Bart, so maybe it was just a shot in the dark.  I did OK on it.
 
Glad you went to a Pain Management Doc....need all the help we can get!

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/13/2008 3:12 PM (GMT -6)   
Man this new regiment is wierd, but I think maybe in a good way??? Anyway, my husband is very ill with an ear infection and stomach ache today... he's seeing and ENT tomorrow at 2pm. We're avoiding each other becuase we don't want to kill each other with our germs...

This "life" I am currently living...???... Is NOT a part of my rock and roll fantasy!.
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08-WE'LL SEE - NEW!!! AND UPDATED!!! - turned out to be 10 weeks of IV Rocephin, my first visit to a Pain Management doctor - oops, but she was cool, non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  And, my abx's have changed again, just see below. 
NEW!!! AND UPDATED!!! - Current Rx's 08/25/08  11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Restoril 30mg Rozerem 8mg, Prevacid, Darvocet, Acidophilus, Flagyl 1500mg Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Urso 250mg, IV Rocephin 4 grams, Magnesium Chloride and/or Magnesium Oil - I need to order off the internet  I never did order that off the internet,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
The "I don't know how much more I can take of this", song - heard this one coming home from my LLDr's office on Halloween 10/31/08 - "Ain't found a way to kill me yet" - http://www.youtube.com/watch?v=5gHiR1xeOSs
 


Contessa420
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/13/2008 3:34 PM (GMT -6)   
JELAINEP - hang in there! I often think that and of course we aren't supposed to - but, it's so fricken hard...so, when I do get all down, I flip through my i-pod and blast "I DREAMED A DREAM" from Les Miserables...here are the lyrics, if you are not familiar - you'll be able to pick out the lyrics I sing at the top of my lungs... I find it helps me get it out so, I can act 'normal' around everyone else...NOTE - I am not telling you to feel down about yourself or what you (and all of us here) are going through (all in our own way) HOWEVER, as I mentioned, sometimes we just have to get it out - so, we can fight this battle with a clearer head:

There was a time when men were kind
When their voices were soft
And their words inviting
There was a time when love was blind
And the world was a song
And the song was exciting
There was a time
Then it all went wrong

I dreamed a dream in time gone by
When hope was high
And life worth living
I dreamed that love would never die
I dreamed that God would be forgiving
Then I was young and unafraid
And dreams were made and used and wasted
There was no ransom to be paid
No song unsung, no wine untasted

But the tigers come at night
With their voices soft as thunder
As they tear your hope apart
And they turn your dream to shame

He slept a summer by my side
He filled my days with endless wonder
He took my childhood in his stride
But he was gone when autumn came

And still I dream he'll come to me
That we will live the years together
But there are dreams that cannot be
And there are storms we cannot weather

I had a dream my life would be
So different from this hell I'm living
So different now from what it seemed
Now life has killed the dream I dreamed.


My sister who also suffers from Lyme, went to a meeting recently and she called me after leaving the meeting to tell me what the speaker said that resonated with her - he introduced himself as a Lyme Disease overcomer...that should be all of our goals! And I am so thankful I have a place like this where I can just be me... : )
Good luck to you and feel better soon!

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/13/2008 8:32 PM (GMT -6)   
I got the mail today, all junk except a letter from my OB/GYN.... which I thought was just a written confirmation that my VERY recent pelvic sonograms, mammogram and chest X-ray were "normal".... since that is what I was told on the phone.

The letter included a new script for 2 new pelvic sonograms to be performed at a very specific time, etc. etc. Soooooo, I call the doctor to see what's up and I was told that they wanted to repeat the exam to "make sure the previous results were accurate, blah, blah, blah." Which is code for, we screwed up and are now covering our a$%es... or the pictures were too blurry to interpet anything... or I'm dying of cancer and no one is telling me (which is where my brain always goes when new "symptoms" rear their ugly heads.)

I hate this disease. On 10/30/08 I had a pelvic sonogram a mammogram and a chest X-ray. I felt like he11... then, I had to go to the IV center for my second to last dose of IV Rocephine (the very end of 10 weeks). I blew a vein, the nurse missed another and then she just put it inside my left elbow (where it bends)... I walked around for 12 hours waiting to take that last dose so I could pull the line and bend my friggin' arm again. The next morning I go to my LLDr. and am told that I am being put on Levaquin and Rifampin and "you're going to get worse".

WORSE?????? HIOW MUCH WORSE DOES IT GET???? On my calender for 10/30 through 11/02 I wrote "I'm having my 13,000th nervous breakdown."

I collapsed on 10/30 at night... I couldn't sleep, my right side was killing me... I was crying... begging God to either take me or rid me of the pain... I finally woke my husband up around 5:30am and just cried and bawled and I am just so OVER THIS DISEASE!

And then I get a sticky note attached to a prescription form informing me that they need a pelvic sonogram "REPEAT"????

Thanks for letting me just get it all off my chest... This disease began when I was 35 years old. I turned 44 a few weeks ago. I want my life back.
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08-WE'LL SEE - NEW!!! AND UPDATED!!! - turned out to be 10 weeks of IV Rocephin, my first visit to a Pain Management doctor - oops, but she was cool, non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  And, my abx's have changed again, just see below. 
NEW!!! AND UPDATED!!! - Current Rx's 08/25/08  11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Restoril 30mg Rozerem 8mg, Prevacid, Darvocet, Acidophilus, Flagyl 1500mg Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Urso 250mg, IV Rocephin 4 grams, Magnesium Chloride and/or Magnesium Oil - I need to order off the internet  I never did order that off the internet,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
The "I don't know how much more I can take of this", song - heard this one coming home from my LLDr's office on Halloween 10/31/08 - "Ain't found a way to kill me yet" - http://www.youtube.com/watch?v=5gHiR1xeOSs
 


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 11/14/2008 1:11 AM (GMT -6)   
Dear Jennifer,
I have  missed you so!!
I am so glad to hear from you; not so glad to hear what you have been going through but am once again impressed by your amazing attitude of survival and kick it to the curb perseverence.
 
I hope, hope, hope this resolves so many of the residual symptoms you've had to suffer through. 
 
You are precious and I look forward to hearing how this next leg of the race goes for you.
 
I have only one request though!  Send me a copy of that pic your hubby took.  I want it on my wall in this little office that captures so much of me.  I'm not kidding!  Maybe Heth will agree to swapping one for another.  Ha!
 
I am praying for you, esp. more knowingly.
You hold on dear friend.
I'll look forward to hearing from you soon -
When all is better, you're going to bring that sense of humor to PA. 
I had to laugh at your emotican idea.  Please don't design those though.  The word picture-idea is enough for me.
 
Blessings,
Sojourner (~di)

"God loves with a great love the man whose heart is bursting with a passion for the impossible." ~booth

www.stylebyheatherrose.com -click "Lyme testimony" and "Lyme Disease" for a panoramic view of the truth.  Lyme disease - coming to a tick near you!


Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 11/14/2008 9:00 AM (GMT -6)   
Hi Jennifer, Just wanted to say I love your spirited personality :>) I hope you start feeling better soon!!
Here is my story:

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 11/14/2008 1:15 PM (GMT -6)   
Jennifer,
I'm so glad to see that you're back, (if not better)!  I love the visz of you on election night!  Hope the next round of meds helps.  You brighten everyone's day with your wit and humor!  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 


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/14/2008 4:39 PM (GMT -6)   
Thanks everyone.... and Sojournor, I emailed you the picture..... let me know what you think haha!
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 11/15/2008 11:52 AM (GMT -6)   
A picture is worth a thousand words.  TY.  Keep fighting with all that is in you!!

"God loves with a great love the man whose heart is bursting with a passion for the impossible." ~booth

www.stylebyheatherrose.com -click "Lyme testimony" and "Lyme Disease" for a panoramic view of the truth.  Lyme disease - coming to a tick near you!

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