My 20 year-old daughter has been diagnosed with neuroborreliosis. She has been sick with many symptoms for the past 8 years and was just recently diagnosed with Lyme disease and babesia. It went undiagnosed for almost 8 years.
This past Friday she started IV Doxycycline (100mg) twice a day.
She tried IV Rocephin for about a week but it was too harsh on her digestive system.
She also tried oral Zithromax but it caused ringing in her ears.
For the babesia she is taking Hydroxychloroquine and Artemisinin.
We are working with an LLMD from New York who has been very understanding and compassionate. We're very happy with the care he's giving our daughter.
I'm just looking for success stories using this regimen so we can all have some hope.
Thanks so much!
[ 12. February 2008, 10:26 PM: Message edited by: Paul M in MA ]
Posts: 80 | From Massachusetts | Registered: Feb 2008
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
I am sorry, but I have no experience to offer with that combination of medicines, though I have read of many others here taking them.
Mainly, I just wanted to say welcome, and so glad for your daughter that she is finally on the right track. The pre-lyme diagnosis time period can be really difficult when we don't have a clue as to what is going on.
Good luck with all!
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
I'm seven months into Rocephin IV and doing pretty well. I'd say I'm 80% back to how I felt pre lyme diagnosis. I spent a year on oral medication before deciding to go ahead with Rocephin IV.
My symptoms were mostly neuro ones. I had severe seizures, myoclonus, etc.,
They have all disappeared. It's a long haul but there is certainly hope for her.
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
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bettyg
Unregistered
posted
paul, welcome to the board!
i just sent you a private message with my lengthy newbie package of info galore.
pms can be found on left side under HELLO by flashing light and in my profile!
paul, you will get more viewer/REPLIES if you would change your subject line and show the meds your daughter is on.
to edit, click PAPER/PENCIL ICON to right of your name that opens up BOTH subject line and body text.
show: newbie, and then list the 4 meds she is/was on specifically .... then you will get those using those meds to sound off to help her/you!
nicely detailed note you posted; helps us alot!
did you also mark lower left hand corner so you GET ALL REPLIES to your post? hit EDIT SEND when done. hope you get MANY replies now.
so glad you found us; we're here to help you all in education; lyme literate md names, and SUPPORT when you need it!
please send me a PRIVATE MESSAGE, 2 PEOPLE STANDING TOGETHER ICON, and share with me the name of llmd/lyme dr. she is seeing.
full name, city/state
i'll make sure they are on our GOOD LLMD list of drs; i have a nationwide list; thank you!
we don't like seeing our members paying out of pocket for BAD drs. and INFECTIOUS DRS. who do NOT treat by guidelines ILADS, intl. lyme associated disease society,
you'll learn here:
good guys: ILADS drs.
bad guys: IDSA, infectious disease society of america; NOT ACKNOWLEDGING CHRONIC LYME EXISTS AND TREATS FOR UNDER 30 DAYS!
note: there are around 1 dozen GOOD IDSA drs. who treat the way we chronic lymies need ok! they are few and far between!
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My daughter is 19 and has chronic neurolyme, babesia and bart also. We are new to IV also. Sorry I don't have much info to help you, but I'm sure others will!
I have a question about the rocephin being too harsh on your daughter's digestive system. What symptoms did she have? What dose was she on? Every day or pulsed?
I wonder if my daughter had a GI herx with IV rocephin. She took a break and has started back again. Let me know if I can help you in any way.
Thanks, MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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posted
IV rocephin is one of the treatments our daughter had that was not clinically a benefit - oral antibiotics are better for several reasons. There is no reason to infuse abx intravenously, and rocephin is not beneficila for this pathogen We also did hyperbaric in the Berkshires and that was not helpful. Probably didn't hurt though.
Posts: 12 | From Weston CT | Registered: Jan 2006
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I'm also a parent of a daughter with LD, Babs & Bart.
We have found this forum to be an excellent resource for information and support; however, you have to read each post with some amount of caution.
There are no real experts out here on which treatment works best; there's just a bunch of us who are either sick or are caring for a loved-one who is sick. You'll just need to sift through it all to find out what works for your girl.
I've read recently that taking antibiotics intravenously is not effective. For our daughter, nothing could be further from the truth.
She infused Rocephin, Flagyl & Doxy via a PICC line for over 18 months and the results were excellent. She's not been cured of Lyme by any means, but the infusions brought her to a point where she has some semblance of a life.
She was confined to a wheelchair and a hospital bed in our home. She is out of both.
She suffered from very severe nuerological symptoms (speech problems, short-term memory loss, confusion, cognitive problems). At this point in her treatment, most, if not all of these symptoms, have decreased dramatically.
Good Luck on your journey with your daughter. There are good people out here willing to share and to listen, take advantage of them.
LymeDad
Posts: 681 | From California | Registered: Oct 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome to LymeNet.
So sorry to hear about your daughter and her long time of being sick! But happy to hear she is on the road to recovery.
The Babesia protocol is somewhat an individual thing.. as is Lyme treatment in general. What works for one may or may not work for another.
The nice thing about the LLMD though is that they won't give up... so you will be getting the best they've got to offer.
I do hope you all know about a "herx" and the problems she may have with that?
If she wants to chat and/or learn more about Lyme, please send her on by.
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