I'm back to update and get advice, it's been 6 days that I have been all abx, Dr. D took me off because for the last six months approx. I've been on biaxin & plaquenil (been treated though for the last two years, yes, switched up abx every six months which I forgot to mention in my previous post). He took me off to see if I stay the same or get worst? Why it didn't make sense to me, but I think it had something to do with seeing a neuro??!! But now 6 days later I am in total pain from arms down to back, legs etc. I wrote to him because he said if pain came back he'd try zirithomax (sp?)
Has anyone else had this "experiment"?
and what were your results on zirithomax?
Posted by AZURE WISH (Member # 804) on :
I was never taken off abx to see if I would get worse....
were you symptom free..... if not that sounds like a nutty idea to me.
The only reasons I was ever taken off of abx was because other medical factors made it so I could not safely take them (liver enzymes elevated ect.)
I took zinthromax IV it helped some but other abx have helped much more....
But someone I know took it and that was the abx that fixed their symptoms... symptom free now.
So it just goes to show you the variation of results between people.
Best wishes
Oh and some people get ringing in their ears (titinitus ...sorry I can't spell for beans) from the zinthromax.
Posted by kelmo (Member # 8797) on :
Zithromax is good for Bart. Do you have a co-infection? Maybe he's seeing if something will pop up.
My daughter is making slow and steady progress on Zithromax, but she has only been in the process for four months.
Hopefully, he'll listen to you.
Kelly
Posted by Lymetoo (Member # 743) on :
It's best to be symptom free for at least 2 months before going off abx. Hope he will put you on zith SOON, before things get out of hand!!!!
Posted by mammachase (Member # 5697) on :
No I'm not symptom free, he took me off because I've been at a stand-still on biaxin/plaquenil and he wanted to see what would happen????I don't know why, but I am getting worst already and want him to put me on zithomax.
Posted by NP40 (Member # 6711) on :
Mamma, my son had great success on zith as have many others I know. If this doc likes to prescribe plaquenil so much why not prescribe it with the zith ?
All you'd have to do then is mix in artemisinin and you'd have a pretty decent babesia treatment. I'm not sure you're exhibiting any babs symptoms but my son did this regimen and it cleared his babs.
Posted by mammachase (Member # 5697) on :
NP40 and all when you ask if I'm showing any babs symptoms; pins & needles/numbness in hands & feet. Muscle/tightness pain in legs and arms. Total body pain for 4 years, previously in the first two years could barely walk because my legs muscle/tightness/spasms were so bad. Now it is still bad enough that walking thru a store or doing just normal housecleaning/walking a distance I can't. Is this part of babs symptoms?
Posted by JimBoB (Member # 8454) on :
You were at a standstill, MOST likely, because you were on the antibiotics TOO long and they were not doing any good, anymore. You needed to switch up.
What you REALLY needed to do was go on herbs. You should take the herbs for at least 8 months to a year, as per Buhner's protocol and expanded protocol's, in his "Healing Lyme", naturally, book.
It is good he took you OFF the abx, BUT should have given you an herbal protocol. Oh, that's right, he wouldn't have made any money from kickbacks on them, would he?!?!
Typical duck, right?
Jim Posted by JimBoB (Member # 8454) on :
Mamma: PS: Your symptoms sound a lot like MY symptoms which I attribute to Lyme, but could be either Lyme or Babs, with some from one of the other co-infections.
Jim Posted by trueblue (Member # 7348) on :
quote:Originally posted by cave76: OR, it might have been because you weren't on them long enough---- or the correct one.
*nods*
Well, now that the inhumane experiment is over. I'd push for starting the Zith.
Also to my mind a plateau may mean it's time to change meds but at other times... to continue and see where it goes. (Sorry, I have no idea how long you were at a stand still for.)
My non-medical opinion get back on something asap.
Posted by mammachase (Member # 5697) on :
I am waiting for Dr. D to call in prescription for zirithomax, he is so hard to get a hold of. I'm so frustrated with everything!
Posted by JimBoB (Member # 8454) on :
Mamma: A week off is GOOD. Longer without anything is getting dangerous IMO.
However, I am wondering WHO is inhumane here, as trueblue has insinuated.
IMO it is the doctor who is taking your money, but is "experimenting" with YOUR health and well being.
NONE of US here, can tell you what to do either. WE are NOT Medical Doctors, so can't diagnose and prescribe, legally. However, common sense has to take over eventually, and when something is NOT working, it is time to move on. Whether it be abx OR herbs OR something else.
HOPEFULLY you will find that right thing for YOU.
Jim Posted by trueblue (Member # 7348) on :
quote:Originally posted by JimBoB: However, I am wondering WHO is inhumane here, as trueblue has insinuated.
From my personal experience of repeated treatment interruptions, be they ABX or alternative. Any doctor leaving you hanging with no info, meds or honest answers.
I do understand the, "ok let's take a moment and back off to see what happens" but as soon as mammachase began to crash she shouldn't have had to wait for them to get back to her.
(mamma I hope they've gotten back to you, you are back on meds and make up any lost ground quickly.)
That's cruel, I've been there!
I was kept off any treatment for a few months, at my worst, because my doc and prominant LLMD decided that maybe I had "Post Lyme Syndrome" Ran a trial of only plaquenil only on me (I do not have RA) and wanted a neuro psych exam done.
3 months later and 10x the increased pain from the plaquenil, which has yet to resolve (10 years later), the LLMD decided the neuropsychiatrist was wrong and I did indeed have an active infection and needed treatment.
That was completely inhumane! Nobody should have to suffer like that. Shame on me for not being able to get into see another LLMD at that time, the waiting lists were too long. My mistake and my extra 10 years of pain.
Posted by mammachase (Member # 5697) on :
Hooray, I went to my pharmacy and my prescription for azithromycin 250 mg 2x's a day was there!!! Wish me luck!!!
Posted by trueblue (Member # 7348) on :
Good Luck, mammachase!
Sorry to have been ranting on your thread.
I hope it works well for you. trueblue
Posted by Jill E. (Member # 9121) on :
Mammachase,
I'm glad your Zith Rx is in and hopefully you'll recover that lost ground. I've been off antibiotics twice due to other reasons and it's frightening watching helplessly as one's symptoms returns.
Has this doctor ever run a CD57 test on you to help determine if you still have an active Lyme infection (yes, it's just one little tool but maybe would help him resist wanting to yank you off antibiotics too quickly).
Take care, Jill
[ 12. May 2006, 05:28 PM: Message edited by: Jill E. ]
Posted by mammachase (Member # 5697) on :
My LLMD Dr. D has not run any tests. I was clinically diagnosed having eliminated EVERYTHING else by 10 different types of doctors that said "We don't know what's wrong with you" and then I almost gave up until I saw Dr. D and he said it was not necessary.I can't wait to see if this new med helps me more.
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Ran a trial of only plaquenil only on me (I do not have RA) and wanted a neuro psych exam done.