Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 nikki, so, so, so happy for you and your daughter!!!! sorry, cannot comment on IV as i have always been on orals, but not to worry, Dr. H will know what to do and it is GREAT news that you found a dr. that will learn, go to the ILADS website and i think they have info/brochures for dr.'s willing to learn and they tell when they have training/conferences too, maybe new dr. will want to get ILADS trained, great job!!! ps- i think you saw initially my lyme naturopath in san diego, she is from australia. if you don't know her email me privately and i will give you her info, she might have connections for you in australia or be interested in corresponding with dr. also. On Thu, Dec 2, 2010 at 3:06 AM, Nikki <ncoleman@...> wrote: > > > Hi > > I just wanted to share our good day, and ask a question. > > For the first time in months my daughter left the house today (apart from > trips to the hospital). We went to the comic book store & she was THRILLED > to be doing something " normal " (the comic book store has parking right > outside and a wheelchair entrance, making it easy to get there). > > She was paralysed and couldn't swallow & was having trouble breathing & > speaking 2 months ago, now on Rocephin IV she's made a huge recovery. She's > had LD 16 years (congential from me), but got a lot worse from tick bites in > 2007 & 2008 in Sydney, Australia. We've just come back after 12 months in > the US for treatment, & she had to stop her oral abx due to complications, > and she rapidly declined - but is now on the mend (the main problem was > finding a Dr in Australia who would treat her for LD on the instructions of > Dr H from Hyde Park NY - but we've found someone - who knows nothing of LD, > but is willing to learn & follow advice from Dr H). > > I knew all you mums & dad's would know the thrill that having a good day > brings - they are so infrequent at the moment that they are something to be > cherished and celebrated. > > On to my question.... > > How long have people been on IV Rocephin (Ceftriaxone)?? The Aussie Dr was > talking about a few weeks, maybe a month, maybe up to 3 months. It seems > from this that people have been on IV treatment for MUCH longer, so I was > interested to know about that. If you were on for longer periods did you do > it by PICC, or by Hickman's port, or something similar?? > > Thanks so much - it is great to be able to share. > > Cheers > > Nikki > (together we can fight Lyme Disease & WIN) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 Dear Nikki, It is so good to read of your daughter's good response. It sounds like my daughter. She was ill from a bite as a toddler, so about 13 years prior to starting on IV Rocephin. After a week she had the first 8 hours of activity in her entire life! Prior to that her days were 2-4 hours of total activity, and any more would bring on a payback day or two. Rocephin gave her many days over 8 hours and up to 14-16 hours of activity!!! she was on it for 2 months and would have been on it longer except she got sludge in the gallbladder and switched. Two of our friends who see Dr. H were on it longer than that. My daughter went from Rocephin to Claroran for a month, which she proved to be allergic too, and then took a 4 months break from IV. She did 2 months of IV Zithromax and then the IV Doxy for 18 months and only stopped because of a reaction she had. She was well enough to stop IV at that time, but may start up again if Dr. H feels it could benefit. Good luck with the Iv hugs, On 12/2/2010 6:06 AM, Nikki wrote: > > Hi > > I just wanted to share our good day, and ask a question. > > For the first time in months my daughter left the house today (apart > from trips to the hospital). We went to the comic book store & she was > THRILLED to be doing something " normal " (the comic book store has > parking right outside and a wheelchair entrance, making it easy to get > there). > > She was paralysed and couldn't swallow & was having trouble breathing > & speaking 2 months ago, now on Rocephin IV she's made a huge > recovery. She's had LD 16 years (congential from me), but got a lot > worse from tick bites in 2007 & 2008 in Sydney, Australia. We've just > come back after 12 months in the US for treatment, & she had to stop > her oral abx due to complications, and she rapidly declined - but is > now on the mend (the main problem was finding a Dr in Australia who > would treat her for LD on the instructions of Dr H from Hyde Park NY - > but we've found someone - who knows nothing of LD, but is willing to > learn & follow advice from Dr H). > > I knew all you mums & dad's would know the thrill that having a good > day brings - they are so infrequent at the moment that they are > something to be cherished and celebrated. > > On to my question.... > > How long have people been on IV Rocephin (Ceftriaxone)?? The Aussie Dr > was talking about a few weeks, maybe a month, maybe up to 3 months. It > seems from this that people have been on IV treatment for MUCH longer, > so I was interested to know about that. If you were on for longer > periods did you do it by PICC, or by Hickman's port, or something > similar?? > > Thanks so much - it is great to be able to share. > > Cheers > > Nikki > (together we can fight Lyme Disease & WIN) > > Quote Link to comment Share on other sites More sharing options...
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