For those of you who have been on either of these, how long were you on them (did you pulse them for 30 days, 60, more--less??
Also, were you on other abx concurrently.
I won't take responses as medical advice and we have a doc---just trying to get a heads up.
By the way, my husband is currently on 400mgs of doxy, 250mg of zith working up to 500mgs per day. We have been working up to this for almost 8 months. The plan is to later add Tini.
If anyone could share your experiences, I would greatly appreciate it.
Posted by Andie333 (Member # 7370) on :
Sojourner,
I'm on my first dose of tini. I ramped up slowly to the dose my LLMD suggested. Taking it along with ceftin and rifampin.
My LLMD has me pulsing tini -- taking it for a week, then going off it for another week. Then taking it again.
I've had a pretty nasty headache, and I'm a bit more tired than before, but I've kept working.
I hope this helps.
Andie
Posted by johnlyme1 (Member # 7343) on :
I pulsed both of these at differnt times in my treatment - I could only do 4 days in a row and then took 3 to four days off. I did this for a number of weeks - Also, if you have any babs in your system the tini will start to kill off some of this. It took me some to realize that I was killing off more than just the lyme. If you have any other protozoa like parasites both of these meds will also have an effect.
Posted by gardenoflyme (Member # 9261) on :
i have used tini twice in treatment. early on it was given after treating with bicillin injections. I took it daily 500 mg 3 times a day for 110 days. 90 days is the normal max and at 100 days i started to get side effects so had to quit. all side effects disappeared within days of stopping the tini.
the second time it was pulsed--5 days on, weekends off, every other week at a dose of 500 mg twice per day. this was in combo with either ketek, or later with doxy and biaxin, followed by biaxin and cipro. I have been doing this for 14 months and this past 14 months has shown the greatest improvement since early treatment. I have been in treatment for 5 years and am very, very close to being back to good health.
my only side effect has been insomnia after about 2-3 days of the tini. i tough it out knowing that after the last dose the sleep goes back to normal.
Posted by 5dana8 (Member # 7935) on :
I pulsed flage & tinnie for 2 1/2years.
Flagel stopped working after a while so I switched to tinnie. I never took either of them without being on abx.
I herxed on both pretty much the whole time I was on them.
But you have to realize everyones different and one treatment doesn't fit all.
make sure to talk over everything first with your LLMD
Posted by Sojourner (Member # 9424) on :
Thanks guys, I really appreciate all of your responses.
Indeed, the more I read the more I realize this is all very individual.
Looks like what we are doing and planning is within the realm. That's what I wondered.
Posted by lou (Member # 81) on :
A lyme doc told me that the pulse needed to be at least two weeks at a time, something to do with the cycle of the germ or something. Anyway, this is not what I was doing in the past. I also observed that with some drugs, cyst killing did not produce any effect as far as herx is concerned. Others did. Not sure what to make of this. Some researchers in the past have said that some antibiotics are more likely to drive ketes into cyst form than others are.
Posted by DolphinLady (Member # 6275) on :
I was on flagyl zithromax, standard dose of each, for nine months straight. I developed neuropathy in my feet the last two months.
This symptom resolved after a few months. I did however use infrared light therapy to speed up the healing.
Best wishes.
Posted by Sojourner (Member # 9424) on :
First, thanks for all of responses. Everyone is very helpful and is greatly appreciated.
Lou, I am interested in this line of thinking. Dr. P mentioned this to us and he explained it in just the way you did. This is contrary to what my husband had been doing previously---one 5 day flagyl pulse every month.
Do you have any reason for why docs think at least a min. of two weeks on flagyl is a must at one time. Is it incomplete cyst busting, bleb formation, etc?????
Thanks
Posted by lou (Member # 81) on :
Sorry, I don't know the thinking. It caught my attention though because I had not been doing it this way and plan to soon. Got my pills sitting there ready. But it is such a yeast generator, that I am wondering if I can do it alone, without the other abx.
Posted by ldfighter (Member # 9405) on :
"When incubated for 2 weeks, 40-50% of the 10-month-old cysts and 10-20% of the 1-day-old cysts contained core structures. When incubated micro-oxically at 37�C with TZ [tinidazole] concentrations of 0.125 μg/ml (1-day-old cysts) and 0.5 μg/ml (10-month-old cysts), less than 5% of the cysts contained core structures; instead, the cysts had dissolved, revealing their green contents."
"...the content of the cysts dissolved completely when the concentration of [tinidazole] was 32 μg/ml and the samples had been incubated at 37�C for 14 days in a micro-oxic atmosphere."
They also found that tinidazole did not lead to bleb formation, whereas flagyl created a few blebs. Maybe another advantage of tini.
Posted by Health (Member # 6034) on :
thanks for this article ldfighter, very helpful for me right now.
It says that you need to take it for 14 days straight for it to have an effect, I wonder if this is the same for flagyl?
What do other say about this? why are some LLMD's then pulsing flagyl for 4 days and so on.