CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
For some people in our local group 1 month of Rocephin means a great deal- for me it did notihng- I needed 9 months- the first 6 months nothing happened that I could see and then every day was a new miracle!!!!!!!!!!!!!!!!!!!!!!! One person in our group needed 2 years and she went into full remission after 9 years very ill! I am 99.9% but not in full remission. Some people it really helps in 1 month. SOme it doesn't. Depends on sick oyu are & how long sick- one suggestion- make sure you have been treated for ALL co-infections PRE Rocephin because they may impede progress!!!!!!!!!! Take care, Sincerely, Sarah
-------------------- 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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My daughter, 14, is on IV, first Rocephin for 3 months, now she is on Claforin, because she developed gallstones.
The first month she herxed. She started in the summer so that was good for school.
She wants her PICC line forever. A teenage girl who knows this is what brought her back to life. However, she is almost done with her 4 month, and I would say she will go beyond 6 months. She is not cured at all. She had to be off the IV for 5 days until her liver functions were fine and when she went back on IV, she major herxed.
She still has far to go but is she getting better, definitely.
I asked that questions too. How long? I got the answer when you feel good for two months then maybe your ready.
Lyme4
Posts: 60 | From RI | Registered: Dec 2006
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posted
the goal is to basically treat my neurolyme with the most proven evidence based technique following the columbia-fallon strategy, 1 month because:
-it is best to fly under the radar of our province insurance's investigational powers; he doesn't need any crap, he treats a lot of patients. i already claim like 10 meds via the odb plan, and they have audited me before (mostly to verify my rxs were not forged, trying to use their plan to cover uses not covered in formulary,) they totally have friendily cleared me, but they may check me up again
-gallstones are a serious concern given my high incidence of stomach complaints with abx meds; ursodiol will be a must, this is a huge insurance very high visibility flare gun charge to them, despite our govt departments general incompetence
-i herx like bananas, i almost wonder if my herxing is capable of permanent damage they are so severe, i imagine since i have had this congenitally likely, i have burrowed cysts galore, i should go easy on myself i think...
-i have taken a lot of abx now, not a lot compared to you guys, but taking biaxin/flagyl practically had an immediate clearing effect on my mind, and my pdoc started thinking i was going manic (bah,) unfortunately i got violently and agonizingly sick soon after and had to stop the meds, and it took a while after stopping for the sickness to stop and i could eat again. i believe taking the high amoxicillin beforehand primed this immediate mind-clearing effect i got a blessful taste of before the sickness tho, so i will prolly take another neuro abx soon after, likely a mino/plaquenil/tinidazole combo.
sorry too long, and needlessly unfragmented.
i will also prolly be taking magnesium galore along with ceftriaxone IV. IV will be a huge plus, so i dont deal with mag clearing much abx out of me, i gather.
Posts: 244 | From Ottawa | Registered: Dec 2005
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
I did one month of rocephin. Added flagyl at week 2 of it, followed that month with 4 or 5 weeks of high dose ceftin and tinidazole. Also used flucanazole (for the yeast). Had to use flucanazole for another month to get rid of all the yeast. I think I got rid of the lyme itself and am now working on coinfections.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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ALS/neurolyme for 2 years(almost wheelchair bound). 2 months Rocephin 1 gram per day I.V essentially stopped the 3-4 pounds / month of muscle wasting and ever increasing weakness. I gained back 15 pounds(of the 30#)of muscle that I lost just with activities of daily living.
I still am definitely not "cured" and continue to battle other symptoms, but I'll take the above anytime(the results). I had previously failed on orals.Would have gone on it longer,but lost my Picc line and have developed some hypersensitivity issues.
Hope this helps.
Travlr1
Posts: 66 | From West Coast | Registered: Jul 2006
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
danielb,
I added flagyl and later tinidazole on my own. My old ID doc wouldn't rx it. I guess he does now with new lyme patients after I sent him some studies. I found flagyl MUCH easier to add after 2 weeks- before that it was intolerable- I think the bbb had to heal some before it could be tolerable.
If you get the rx's Flagyl is cheap, and I got the tinidazole even cheaper from Mexico. Costco has a special deal on 36 tabs of 200mg flucanazole for around $49 I think.
If you buy drugs yourself I don't beleive it's in any insurance company's audit. If you have an rx and you are paying for it out of pocket it's none of their business.
I went for ceftin because it's a cephalasporin that crosses the bbb better than omnicef. Ceftin is expensive though...
Yeast buildup is BAD on this therapy. Very bad- can be nuerologically bad. So- I used fluconazole. Yeast is BAD on biaxin/flagyl too, I wonder if that's why you got so sick...
best of luck!
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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