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 Post subject: Update on my and my kids
PostPosted: Thu Jul 23, 2009 8:32 pm 
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Joined: Thu Sep 25, 2008 7:46 pm
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Location: Dutchess County, NY
Hi everyone. Dana, you had asked me how I am and how I have been doing, and I have been wanting to give an update for some time now.

I will just summarize my story ...
Well it has been since about December '08 since I first got diagnosed with Lyme, Bart, Ehrlichia, and Babs. Had been re-infected in August and took all those months to get diagnosed and treated. I had become severly ill at this point, but after learning about Lyme and other TBDs, I realized I had gotten ill with Lyme originally when I was 12 (I am now 37). All those years (25 or so?) of illness, strange symptoms, doctor after doctor....and noone EVER considered Lyme. Basically, I feel I have been robbed. Basically, I have never felt well as long as I can remember.

That is it in a nutshell. I started to feel better after some major herxing on Doxy and Mepron and then Zithromax. After several months, I felt a lot better and I believe I got rid of the "acute" illness and now I am working on conquering the long-term illness. I have been on Doxy 100mg and Biaxin 500mg for a few months now. I am also taking diflucan, olive leaf, vitamin C, Omega 3, Magnesium, and probiotics.

I feel generally "okay," not great, very tired, random herxing, some herxing that brings me back to the winter when I felt like I was literally going to die every time I went to sleep. I have many symptoms and they change frequently, pain in back, legs, neck, feet, headaches, neurological issues, etc etc...

But I know some people with this disease who are so ill that they are bedridden, and I am soooo thankful for how far I have come.

Next week I finally begin IV Rocephin. My LLMD wanted me on it a while ago but I have been putting it off. I am not sure how often I will have to go but my first IV is set for next Thursday although I may switch it to Tuesday. (details, details)...

I am very uneasy about the IV, I admit I am afraid of the herx, and I am going to search through this forum and read up on other people's experiences. I really don't want to herx and I am hoping I manage to get through it painlessly. I am a teacher and am off of work until September and I also worry about herxing once I start working again...

That is about it for me...took 2 of my kids to my LLMD today for their follow up, and they were both put on abx, my 12 year old Doxy and my 5 year old zithromax. Next week my 2 year old will get tested, although there is very little question that she is positive too, since the other 3 got it from me during pregnancy or breastfeeding.

Thanks for listening! Julie

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 Post subject: Re: Update on my and my kids
PostPosted: Fri Jul 24, 2009 12:19 am 
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Joined: Sun Feb 17, 2008 9:42 pm
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Julie,
Doing IV now is good thing. Look at my LLMd's ignoring IV for 3.5 years. I could have been well. By the Grace of God I know I made it this far...it has been a painful and sometimes psychotic road.

You will do fine on IV, I know quite a few on IV and they are not bedridden or anything, they are functional and doing good. They all say IV is easier than orals!

Don't be afraid - I am right behind ya...it is sort of scary that PICC line especially, but most do very well.

I wish my doctor's had done this years ago instead of letting me suffer so long.

Glad the kids are in treatment they will conquer this kids do.

Makes me think..we need to "come like a child" and believe like they do.

Thanks for the update...keep us updated!
Dana

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 Post subject: Re: Update on my and my kids
PostPosted: Fri Jul 24, 2009 6:26 am 
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Location: NEW ORLEANS
:coffee: What I'm doing rite now. Love my coffee.

Julie,

I'm glad the visit went well....eventho u r a little frightened of the IV. I PRAY 4 u that all goes well when u get it in (NO PAIN) I also pray 4 your children. Let me know how your 5 year old does on Zith, my son coud not take this although he is having problems with the ceftin also...only 1/8 of a tsp 2x a day. I pule him....1 week on 1 week off. He has his follow up with his LLMD on Wednesday so we will see what's next.

Sorry i could not tlk to u when u called but my son had a KNIFE ON THE SOFA CUTTING UP GRAPES!!!!!!!!! OMG It was scary.

:prayer: I pray 4 u all.... :hug: I hug u all.....

Love ya,
Krissy :hb:

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 Post subject: Re: Update on my and my kids
PostPosted: Fri Jul 24, 2009 5:39 pm 
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Joined: Wed Feb 20, 2008 6:50 pm
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Location: Kentucky
I felt the worst with my first one. I got like a migraine headache and upset tummy. Next one the same but not as bad. Each time just got better! I loved it! I felt good on it. Just wished I could have done it longer.

Krissy, your son sounds like me. I couldn't do Doxy, Zith or Ceftin! Do they ever do IV's for little ones? That I handled well. And do you give him a Good pro-biotic? Ultimate Flora critical care. by Renew Life is great. It's the only one that works for me. And I've tried a lot!!!


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 Post subject: Re: Update on my and my kids
PostPosted: Fri Jul 24, 2009 6:08 pm 
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Gina said exactly what a friend told me..her first time was the worst. Her LLMd switches IV meds every 6-8 weeks (which is absolutely brilliant) and she always says the first day of the new abx is the worst and then you sort of adjust I guess. He has had her on 2 different IV meds at the same time and orals as well. Her LLMd has great success.

Ask about taking Actigall to protect your liver and lactated ringers...which I am sure she knows about. (If you aren't familiar, google for description of either).

Is your LLMd going to have you on orals as well? I know she knows what she is doing, so I think it is likely. I assume you will be doing Flagyl at some point too since Rocephin sends lyme into cystic form. That is why people feel good on Rocephin pretty fast and then relapse when stopped - the cystic form isn't hit or the co-infections.

I always say there is a definite art to doing IV right.

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Join us on Facebook and connect with other Lyme patients: http://www.facebook.com/home.php?sk=gro ... 2524317756
Follow us on Twitter https://twitter.com/TruthaboutLD
Truth About Lyme Disease Home Page: http://www.truthaboutlymedisease.com
Truth About Lyme Disease Video : http://www.youtube.com/watch?v=ZGQINypsf7g

Always check w/your MD regarding advice given by me or any member at this forum & any articles & info. at this site. Site disclaimer: viewtopic.php?f=6&t=16


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