poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I was on IV for a long time. Switched to orals about 6 months ago. Can't kid myself, I am going downhill. Very depressed as I don't think I can stand IV again, even if someone will order it and the line, which is unlikely in this or the surrounding states. Why aren't the pills at least keeping me stable like the lower dose pulsed IV meds?
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
posted
Same thing happened to me. I didnt want to go back on IV becaause it was ruining my gallbladder. I went on IM Bicillin and Flagyl and it helped tremendously. The injections were very painful but I still liked it better than having a picc line in my arm all the time! I don't know why the orals don't work as well for some people...Have you done a cyst buster? I thought that might have been the missing piece with me. My advice is to try the IM Bicillin at least 2 times a week for many months. See what your LLMD has to say about this. Good Luck!
Posts: 256 | From long island, new york | Registered: Feb 2008
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Thank you for your reply. My lyme doc is inexperienced and out of state, so not sure he would prescribe this. Do you do these shots yourself? I have no one to do this, my primary care doc would not, so it would have to be me and I am having a hard time picturing giving myself shots in the fanny.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i will do anything to avoid needles in my arms.
i cried and begged one time so bad that they wouldn't give an iv, and they finally said ok and told me i'd better drink those gallons of water or else.
i drank......
maybe just stronger doses would work. and no way could i give myself a shot....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
I think the bicillan shots are a great idea, given that you know the orals aren't cutting it for you Poppy.
Let's face it, if you have neurological involvement no pill will cross the blood-brain barrier like IV, and IM shots are the next best thing. Is there any chance you could travel out of state to see an EXCELLENT LLMD? I hear there is one in DC who is absolutely tops, and who will do follow-ups by phone with her out of state patients.
Maybe a chest port is the answer for you. If you don't mind my asking, how long were you on IV? The Stricker study showed that between 25-52 weeks IV treatment was needed to get neuro patients well again. From what I can tell, it would seem that most folks aren't getting any where close to that treatment.
Look at the Ray Kehrhahn story last month - the CT College Professor who suffered for 22 years and was "near catatonic" last summer when he was finally dxd with Lyme. He went to Columbia in NY, and 9 mos. on IV later, was well enough to enter a Triathlon.
Posts: 1432 | From New Jersey | Registered: Jan 2012
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Thanks aunty, the reason I don't think I could stand IV again is that I had a central line for years when no one would Rx IV. Long story. When I did finally get IV, I couldn't do full doses. Lower doses pulsed worked for a long time but lost my last PICC. And it was so nice to be able to shower, etc. And IV lines can cause problems, as I found out.
So, I thought full dose of orals might do the same as lower dose IV, but it doesn't.
Anyway, I have been around a long time and pretty much know the situation with doctors, insurance, and treatment. I am just not well, and now can't even hold back the symptoms. Have had a headache for 24 hours and a stiff neck, which did not happen on IV. And a couple of nights, my body goes entirely numb.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic