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 ]
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
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.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
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.
Posts: 347 | From WV | Registered: Jan 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I was on 2 grams a day for 9 months and it saved my life*)!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
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.
Posts: 22 | From Texas | Registered: May 2007
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posted
I was on 2gm everday for 6 months last year, best thing I ever did.
anessa
Posts: 16 | From kansas city | Registered: Jul 2007
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frakktured1
Unregistered
posted
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.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
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
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
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
Posts: 44 | From Lafayette, LA | Registered: Apr 2007
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posted
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
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
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.
posted
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.
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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posted
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
Posts: 44 | From Lafayette, LA | Registered: Apr 2007
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tailz
Unregistered
posted
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.
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