posted
Hi, any particular reason or advantage for pulsing that anyone knows of?
I was told to pulse Flagyl 10 days on 10 off but why wouldn't I want to just stay on it continuously like the Rocephin, Ketek, Amoxy, Doxy which I took nonstop for various periods.........
Thanks for any input
Posts: 44 | From Northeastern Wisconsin | Registered: Sep 2005
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
The biggest reason, I think, is to let the immune system to recover from high dose of abx damage.
The high dose of abx is neccessary to kill the Bbs.
But it also damage our systems including the immune system.
And the immune system is very impotant for fighting this disease.
It may play a leading role.
While the medicines are just helping the immune system.
To ultimately eradiate the bugs, a strong immune system is needed.
Peolple do pulse the other medicines you mentioned.
Posts: 1078 | From Fairland | Registered: Apr 2006
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
To allow the body time to restore the nutrients that the various antibiotics deplete.
Into a search engine, type in your antibiotic (or any other Rx) and the word "depletes" and research.
This also gives time for the beneficial bacteria to be restored...hopefully.
The ethanol produced by Bb maybe harming them too. Bb is breaking down our sugars (and fats)-> ethanol. This is not a good situation for the liver, brain, pancreas...
Absolutely essential to keep probiotics up. One cannot ABSORB or MAKE many nutrients if their levels drop.
Wanna know WHY yeast goes up? Yeast LOWER cholesterol and they bind Zn. The body is trying hard to find alternative routes to keep us alive.
The pathogens, all of them....be they bacteria, viruses, fungus...are parasites. They take from us nutrients. Nutrients we need.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
An example of abx damaging our immune system:
Most people on IV Rocephin initailly were feeling good.
But once stop IV, they relapse within weeks.
Why?
My understanding is that high dose of Rocephin killed a lot of Bbs, but also seriously damaged our defense system.
When you off abx, the residual Bbs (probably from cysts) will roam back and cause relaps.
If you keep you immune system strong by using less abx (pulse) and at same time also keep killing Bbs, you'll ultimately eradiate the Bbs.
posted
Hope, when pulsing one of the cyst busting drugs, like Flagyl or Tindamax, the idea is to let these drugs open up the cysts, then give your other abx time to kill of the spirochetes that are released from the cysts.
When I can tolerate it, my LLNP will have me pulsing 3 days on Tindamax (tinidazole) then off for the rest of the week, then back on Tini for another 3 days. Right now I'm just doing 2 days of Tini.
With other abx, I think the pulsing is done to keep Bb "off balance", by not letting them get used to one abx for too long.
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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Dave, I am one of the "miracle cured" by Rocephin but as you say about one month after stopping it I lost major ground--
In retrospect I should have stayed on it twice as long (16 wks instead of only 8wks) and been on Flagyl concurrently as some do but Doc was reluctant to do Flagyl then.....
Patti, I realize Flagyl/Tini is supposed to "open up" the cyst form of BB but since I am on continuous Ketek right now with no breaks -- why not just open cysts constantly and then kill them quickly without "pausing" to let them recover at all??
I am thinking of doing 10 on and only 5 off with my Flagyl, I want to kill every last ******* BB that I can.
I've been lucky so far as none of the abx I've taken has ever made me feel any worse, caused any intestinal problems or negatively affected my blood panels..........
One Theralac each day plus other priobiotics, yogurt and a low carb diet seems to be the trick.
Posts: 44 | From Northeastern Wisconsin | Registered: Sep 2005
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posted
Have you asked your Dr. this question? I decided to email my LLNP (she works w/Dr. S in San Francisco) and will let you know what she says when I hear from her.
I have to assume that they've found limitations to continuous tini, whether that's increased depression w/continuous therapy or perhaps increased resistance of some kind.
Patti
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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Thanks for following up on this pulsing question of mine. My Doc is very nice and willing to do whatever it takes to help me recover.
However, he is not an LLMD and his Flagyl schedule (10 on 10 off) and dose (1000mg/day) is just how he would usually prescribe Flagyl (whatever else it is used for, I'm not sure)
Since BB is so tenacious, I'm wondering if a different/more aggressive schedule might be better in my case.
I have felt zero effects from my first 10 days on Flagyl (no depression, stomach upset, etc.) so I am not at all afraid to increase my dose and /or shorten my pulse period.
Good luck on your Tini pulsing, do you feel any different while on it?
Posts: 44 | From Northeastern Wisconsin | Registered: Sep 2005
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posted
I just started tini this week. With the first 3 doses, my eye started to droop more to the point of closing. With the 4th (and last dose for the week) I started shaking, then when I woke up, I had a rapid heart rate w/palpitations. The last dose was Wed. night, and since then I've begun to feel better.
I have a lot of neurologic involvement, and my head actually feels a little better, like there's less pressure on my brain, if you know what I mean.
patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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posted
I know exactly what you mean -- I saw a world famous neurosurgeon at Johns Hopkins who insisted that "you don't have abnormally high pressure in your head" even though I swore to him that I did!
I could feel it pressing on my eyes and it felt like my head would burst at times. One reason I finally treated myself for BB is that I saw "pressure in the head" as a Lyme symptom on the Canlyme web site.
That was my 44th symptom of the 60 or so listed as "common Lyme symptoms" and the last piece of the puzzle for me.
Have you had IV Rocephin yet? I was just about dead (heart skipped beats, major neurolyme) and 8 1/2 weeks of Rocephin brought me back to 80% of normal.
I also temporarily lost some vision in one eye but it is all back now. I think there is no question that IV abx are the very best for neurolyme.
Posts: 44 | From Northeastern Wisconsin | Registered: Sep 2005
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posted
A cyst buster does not have to be used to wait for the bateria to be in a certain phase. It works all the time and therefore, doesn't have to "wait" for it to come out to play for it to work.
One main reason the cyst busters (flagyl, tinidazole (Tindamax), are pulsed because they have some not so great side effects, especially flagyl. They both belong to the same class of drugs, nitroimidazoles, and tinidazole is newer to the market so it has less data on it. It appears to have a better side effect profile, but that could also be because there is less data on it.
The main side effects, especially reported with flagyl (which I experienced horribly) was peripheral neuropathy. If most were to stay on it long term it could/would cause neuropathy. Also, they both usually cause hard herxes in lyme patients, and thus the pulsing allows your body to recover. The point is not to drive yourself into the ground.
Finally, I have heard of, and experienced depression on Tindamax. So that is something that can be reduced with pulsing.
Just my 2 cents worth.
good luck.
jloisu
-------------------- jloisu Posts: 197 | From Seeing Lyme Green in Iowa | Registered: Jun 2005
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JimBoB
Unregistered
posted
HOPE IS GOOD:
I personally do NOT think it is a FACT that ANY abx is the "BEST" for treatment of Lyme D.
I think it is very debatable that abx are the BEST way to go. Though I DO agree that they DO have SOME merit in tratment of Lyme and it's co-infections.
From MY experience, MY progress was stunted, if anything, from abx. I felt better AFTER taking herbs, but BEFORE taking the abx with them.
IT took quite awhile for me to feel even close to how good I felt BEFORE the abx of almost two months.
HAVE you tried a GOOD protocol of herbs, as opposed to abx, to be able to make THAT statement? I am from Wisconsin also, so COULD have the same strain of Lyme as you.
posted
Jim, I believe that within the Lyme treatment community (LLMDs) there is a general consensus that IV abx are clearly more effective than oral abx for the treatment of advanced neurolyme.
I think it may be because of the superior ability to cross the BBB at lethal (to BB) concentrations for one thing.
Whatever, I'm sure there are many other good Lyme treatment options.
I do know that for ME IV Rocephin was truly a "miracle"..........
Posts: 44 | From Northeastern Wisconsin | Registered: Sep 2005
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
hope is good,
welcome and just to let you know - flagyl's side effects to watch out for are tingling and numbness. i'm not a doctor, but that's what i was told.
i,too, am pulsing flagyl. i find it is the best drug as far as cognitive stx, which is mostly what i've got. i pulse flagyl and biaxin every other day. plus take doxy and malarone every day.
good luck.
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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posted
The MP folks say that the highest rate of bacteria killing occurs as the abx level in your body is dropping off, hence the reason for pulsing. My worst herx is usually during the abx drop off periods.
Posts: 727 | From USA | Registered: Mar 2006
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posted
I was on zith and flagyl for 10 months straight with no breaks. I made significant progress and remember feeling great while on this combo.
I did develop neuropathy in the last two months, but it resolved after stopping these meds.
Posts: 925 | From California | Registered: Sep 2004
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