Could you please let me know what dose you are on. I have been on several tablets with just some results. I ampreciated you sharing your wisdom from the bottom of my heart. Much Love, Roz
[ 04. September 2007, 05:33 PM: Message edited by: TO LIFE ]
Posted by david1097 (Member # 3662) on :
The recommended dose depends on which guidelines you follow. Ilads is 2 gm twice per day, IDSA is 2 grams once per day. Ilads stops for 3 days every week, IDSA is every day.
Ilads stops to minimize the herxhiemer reaction. IDSA doesn't beleive in a herxhiemer reaction so does not account for it.
Both appraoches seem to work in the beginning, the IDSA long term result is however not so good as relapse often occurs. IDSA does not beleive in relapse either so to them it never happens and thus to them, their treatment is perfect.
Posted by yourtroubl (Member # 11087) on :
I am doing 2 gr twice a day. I have not had any problems with the medication.
I have had 3 tries for the groshong port to be put in though. However, the medication is wonderful.
Posted by CaliforniaLyme (Member # 7136) on :
I was on 2 grams a day for 9 months and it saved my life*)!!!
Posted by davidx (Member # 8326) on :
I am seeing an LLMD who put me on 2g/day 7 days per week. I've been on this for about almost 7 weeks.
-David
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by david1097: IDSA doesn't beleive in a herxhiemer reaction so does not account for it.
I didn't realize they're THAT stupid!! Posted by Kevin Hamblin (Member # 12019) on :
If you're in the military, like me, they don't treat you at all!!!
They said the protocol was too dangerous. It is safer to just let it run its course.
They would like to do a brain biopsy though (because of my PET scan). Apparently that is not too dangerous. (Ha Ha).
My LLMD did prescribe Rocepherin twice a day for four days a week as per ILADS though. I would love to try it, but the military is not a democracy and I am not free to choose what to do with my health.
Posted by kai_ilima (Member # 12475) on :
I was on 2gm everday for 6 months last year, best thing I ever did.
anessa
Posted by frakktured1 (Member # 13028) on :
Exactly TUTU.
this above seems to be the consensus but your doctor should be prescribing this for you and whether or not to pulse with a cyst buster is important as well.
Military man, have they isolated your problem? What have they named it?
Are they treating you with anything at all? And tell them we're way past the fear of creating a "super bug" or adverse health affects due to abx use.
fxd
Posted by CaliforniaLyme (Member # 7136) on :
Kevin- put treatment first!!! I am going to post the story of another military man- another Kevin, too!!!!!!!!!!!!!!!!!! Look in General SUpport- it's for you!!!
Kevin RIng, 37
Posted by Jamiet (Member # 11601) on :
I just had my mediport put in today. I start with 1 gm per day for 7 days, first dose today when they put it in, then, move to 2 gms 2 x's per day for 4 days, then 3 days off...then 2gms 2x's per day 4 days then three days off......stay on that cycle for at least 4 - 6 months...
I'm keeping my fingers crossed this works, i'm running out of options
rgds,
jamie
Posted by davidx (Member # 8326) on :
I thought I'd follow up with another comment regarding IV rocephin dosing.
Dr B's guidelines do mention 4g/d for 4 days and then 3 days off.
I talked to 2 different LLMDs yesterday about this and they both said that this is not necessarily better or worse than 2g/d 7 days per week. There are some plusses and minuses to each but at the end of the day, different people can respond very differently to the same protocols.
-David
Posted by kelmo (Member # 8797) on :
Remember, Dr. B's guidelines are GUIDELINES. Good guidelines, but they are not concrete rules.
On this theme of IV.
I have a question to all those who have used IV. I've heard from CaliforniaLyme, but I would like to get a concensus of agreement.
My daughter is 19, has had zith/rifampin, zith/ mepron, to treat bart and babs.
Most of her pain is now concentrated in her spine. When she started mino a couple of weeks ago, we started her on 50mg twice a week. The pain in her spine was excrutiating, so we had to stop before doing damage.
I have a feeling the LLMD (I'm glad he's honest, but hard to hear this) is now throwing darts at a treatment board. He may put her back on mino, he doesn't do IV's due to the risk, and what he says, "failure".
If you had IV, did it take you to a new plateau? Would you do it again? Do you think IV would be the treatment of choice for spine involvement?
My daughter is afraid her OCD might kick in and she would pull the thing out in the middle of the night. That could be a deal breaker there.
Your thoughts and opinions are welcome.
Kelly
Posted by LuLuFlorida (Member # 12066) on :
I was on 2 grams of rocephin twice a day 5 days a week for 6 weeks. I had to have my PICC line pulled due to yeast growing around the site. I was supposed to be on this for 3-6 months. As for the Rocephin, I did not have any negative side effects from it. Most people do not herx badly on it alone.
Posted by Jamiet (Member # 11601) on :
According to my LLMD, picc lines are dangerous, but many people have had them with no problem.
I went with the mediport.
There are issues anytime you access veins many times, but Rocephin is one of the best lyme treatements.
I will tell you, i am into day 3 of this and, it's not easy and not cheap.
Good Luck
Posted by tailz (Member # 10014) on :
Just be careful - my liver enzymes shot up after only a week of IV Rocephin, and we had to break for three. When we restarted, it did not seem as effective. There is a risk of gallstones with this one.
![[dizzy]](graemlins/dizzy.gif)
![[Eek!]](eek.gif)