Sorry I haven't been on in forever!

grace 14

Regular Member

Joined : Dec 2007

Posts : 99

Posted 12/3/2008 7:51 PM (GMT -6)

Hello healing well!,

Hello everyone sorry my mom (paininfl) and I haven't been on in so long. It is because we are done with our treatment, and my mom and sisters and I are doing wonderful!! I was just thinking about all of you and thought you would like to hear how we were doing. We all got out picc lines pulled in July of 08 and after we got our lines pulled we have had no reactions and have not seen any downfalls! Dr.C is our hero! We thought in the beggining of all this our lives would not change but a little bit. We were totally wrong! So if your in this position it will all be worth it in the end!!! I am so happy to see my mom doing so well it was heartbreaking through these times..... Happy Holidays to all, and just know i am thinking about you all. We are doing great.

~Summer~

Diagnosed with lyme 1/19/08. Mom passed lyme on to me and my sisters. Started IV treatment 3/18/08. Have helped 4 people diagnose lyme!

"Just know your future will get better and your not alone!"

alfers

Veteran Member

Joined : May 2005

Posts : 2671

Posted 12/3/2008 9:16 PM (GMT -6)

Thanks for posting Summer! That is wonderful to hear!! I was wondering what happened to all of you. Say hi to your mom for me, and have a wonderful holiday as well!

Lyme and co-infections since approximately 2002. Diagnosed in 2005. Treated for two years solid. Diagnosed with Lymphomatoid Papulosis in October 2007. Currently back on abx.

Moderator for Lyme Disease forum

grace 14

Regular Member

Joined : Dec 2007

Posts : 99

Posted 12/3/2008 9:25 PM (GMT -6)

I will do! I will try to post more and update and let you all know what is going on so you dont worry or wonder! I know i would wonder too if i were you! Thanks alfers!!

Diagnosed with lyme 1/19/08. Mom passed lyme on to me and my sisters. Started IV treatment 3/18/08. Have helped 4 people diagnose lyme!

"Just know your future will get better and your not alone!"

JELAINEP

Veteran Member

Joined : Sep 2007

Posts : 2017

Posted 12/3/2008 9:57 PM (GMT -6)

CONGRATULATIONS!!!!!!!!!!!!!!!!!! - Did you get to "ring the bell" at Dr. C's office?

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?", song -}^{http://www.youtube.com/watch?v=5gHiR1xeOSs}

hopingToFindCure

Veteran Member

Joined : Nov 2008

Posts : 759

Posted 12/3/2008 9:59 PM (GMT -6)

There's a bell to ring when a doctor gets you well? Who is Dr. C and how can I get an appointment?

BTW, Summer -- THANK YOU! The best post ever.

bablymers

Veteran Member

Joined : Oct 2006

Posts : 1458

Posted 12/4/2008 1:16 PM (GMT -6)

Hi Summer! Amazing, wonderful, good news! So happy for all of you. Thanks for the update. Say Hi to your family for us.

bablymers mom (teenlymers mom)

grace 14

Regular Member

Joined : Dec 2007

Posts : 99

Posted 12/4/2008 5:38 PM (GMT -6)

JEANIEP-I did ring the bell we rung the BIG one it was an amazing feeling!

babylymers- I will say hi to everyone for you! How is your daughter doing?

HopingToFindACure- Heres my email LymeFamily@aol.com I am not sure your supposed to mention any doctors full name so email me about what you might need!

Diagnosed with lyme 1/19/08. Mom passed lyme on to me and my sisters. Started IV treatment 3/18/08. Have helped 4 people diagnose lyme! July of 2008 got picc line pulled and ever since then have had no pain and doign tremendously good!

"Just know your future will get better and your not alone!"

Post Edited (grace 14) : 12/4/2008 4:14:44 PM (GMT-7)

Martha's Vineyard

Veteran Member

Joined : Jul 2008

Posts : 1119

Posted 12/4/2008 8:20 PM (GMT -6)

I love it . A bell! Question, how did your mom pass it to you and your sisters? Were you born with it?
I am going to e-mail you directly. i have a bunch of questions. Fantastic! hey don't forget to e-mail Oprah and tap on Dr. Oz to
tell him your success story. He is really getting involved with finding out what works for people.
Marie

2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."

Martha's Vineyard

Veteran Member

Joined : Jul 2008

Posts : 1119

Posted 12/4/2008 8:27 PM (GMT -6)

Fantasic! A whole family! That is wonderful news! That is a first for me to read!
Do tell for those of us who do not know your treatment.

Martha's Vineyard

Veteran Member

Joined : Jul 2008

Posts : 1119

Posted 12/4/2008 8:27 PM (GMT -6)

You live in Florida????

grace 14

Regular Member

Joined : Dec 2007

Posts : 99

Posted 12/5/2008 8:59 AM (GMT -6)

Marthas vineyard- We were born with it my mom passes it to us through the placenta and breast milk. I will email that doctor and let him know finally people getting it out there!! I do live in florida I will tell you our lyme story later tonight because its so long!

"Just know your future will get better and your not alone!"

teenLymer

Regular Member

Joined : Dec 2006

Posts : 186

Posted 12/5/2008 5:00 PM (GMT -6)

Summer!!

What fantastic news to hear! I'm so happy for your entire family.

I'm doing OK, not a whole lot of change in my condition, but maybe slightly better neurologically as of late. Hey, I'll take whatever improvement I can get!

Happy Holidays!! Glad it will be pain free for you guys.

~Sierra

grace 14

Regular Member

Joined : Dec 2007

Posts : 99

Posted 12/5/2008 6:37 PM (GMT -6)

Sierra!!!!

So what treatment are you on? ITS BEEN SO LONG!! Are you getting ANY betteR?

"Just know your future will get better and your not alone!"

1bitten2xshy

Veteran Member

Joined : Jun 2007

Posts : 849

Posted 12/6/2008 9:29 AM (GMT -6)

Hi Summer!

Don't know if you remember me, we met at Dr. C's office.

I have been so wondering how you all were doing, and prayed we did not hear from you all because you were doing well and not backsliding. So happy to hear you are all doing well!!! YIPPEEEE

Nearing the end (we think) of my treatment, so I hope to be able to ring the BIG BELL too!

Hugs to your Mom and sisters from me.

Melody

jginkc

Veteran Member

Joined : Jan 2008

Posts : 692

Posted 12/7/2008 10:19 AM (GMT -6)

This is great news, congrats to all of you

Month 18 of Lyme and Bartonella
On Zhang, doing much better, but not there yet!

90% functional, feel about 85% of my former self.

ktp812

Veteran Member

Joined : Jul 2007

Posts : 715

Posted 12/8/2008 5:46 AM (GMT -6)

I am so happy you are all doing so well..gives me hope. I do have a question though. What medications did you infused through your Picc lines? I am getting my Picc today for the second time and am doing a rocephin/zithro pulse. Since you all seem to be doing so well I was just wondering what got you to this point because I want the same stuff!

JELAINEP

Veteran Member

Joined : Sep 2007

Posts : 2017

Posted 12/8/2008 9:10 AM (GMT -6)

If anyone would like the info. on Dr. C in the Tampa FL area, please email me directly.

Dr. C has many bells, but one gigantic old fashioned "dinner bell" (my grandmother in PA actually had one of these in her side yard - haha - maybe it's the same one that's in Dr. C's office!!?!!) Whenever anyone gets "well" or successfully completes treatment they ring that big ol' dinner bell. The dental office nextdoor must go crazy everytime that bell is rung! I told Dr. C that when I get well I'm not only going to ring that bell, I'm going to buy him an even BIGGER bell... or maybe just bring in the Liberty bell - haha.

All the best.

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

^{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}^{Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg, Skelexa, Restoril}

^{Medicare/SSDI theme song}^-^{http://www.youtube.com/watch?v=bd2B6SjMh_w}

^{"How much more can I take?", song -}^{http://www.youtube.com/watch?v=5gHiR1xeOSs}

grace 14

Regular Member

Joined : Dec 2007

Posts : 99

Posted 12/8/2008 6:33 PM (GMT -6)

Hey 1sbitten2xshy- I do remember you and thank you for keeping us in your prayers i know for ALL of the lyme forum I pray for you all!!

ktp812- I did rocephin and zithromiacin also i did it pulse also what happened to your first picc line...?? Do you have any other co-infections because i did. Email LymeFamily@aol.com if you need and other information that I cannot mention on here...!!!

JEANIEP- LOL!!

Gracies mom- How is gracie? I cannot wait to hear you say she can do things like she used to again I feel so bad for her!!

"Just know your future will get better and your not alone!"

ktp812

Veteran Member

Joined : Jul 2007

Posts : 715

Posted 12/9/2008 9:15 AM (GMT -6)

Hi Summer- I had to have the first picc pulled because I got gallstones from the Rocephin. I had been doing great on it so I was really sad about that. Had my gallbladder out in June so now I am free to go back on it. I will be pulsing Rocephin and Zithromax this time. I just had my picc in yesterday and had my first infusion. Were you on any oral abx also? I do have Bart and Babesia. I treated Bart for 8 months and am still treating Babesia. I hope you all continue feeling great and thanks for writing back!

Kim

grace 14

Regular Member

Joined : Dec 2007

Posts : 99

Posted 12/9/2008 5:39 PM (GMT -6)

I have both of those and it took me 2 wekks to cure bart. what are you on for bart? My mom had babesia i will ask her what she took

"Just know your future will get better and your not alone!"

ktp812

Veteran Member

Joined : Jul 2007

Posts : 715

Posted 12/9/2008 8:14 PM (GMT -6)

I took Levaquin for 2 months and Rifampin for 6 months for Bart. I am currently taking Malarone for Babs. I thought both were gone but I just had another positive titer for babs so I guess not...

grace 14

Regular Member

Joined : Dec 2007

Posts : 99

Posted 12/10/2008 5:56 PM (GMT -6)

Oh thats what i took but it didnt take 6 months for it to go away......

"Just know your future will get better and your not alone!"

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