posted
I have been doing 750mg 3 days on, 4 days off for over 6 months now.
I saw a new LLMD today who indicated that Burrascano recommended going for 2 full weeks at 500mg, then off for either one or two weeks (I forget... I think off for 2).
I don't know yet if I'm going to start seeing the new LLMD or continue with my current.
Does anyone know if he is correct about Burrascano's recommendation on flagyl?
I do seem to remember reading somewhere that recent research shows that flagyl must be consistently in blood stream for 2 weeks in order to be effective, but not sure where I read this.
I'm wondering if my past 6 months of flagyl has been ineffective since I have not been pulsing this way. Regardless, I'd like to start pulsing the way that has been proven to work the best.
Thank you, V
Posts: 453 | From TX | Registered: Aug 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My Burrascano type doc put me on 250 mg flagyl 3 times per day for 2 months straight. No pulsing. That's how I got rid of my lyme disease.
I went undiagnosed for at least 5 years, probably more like 10 years.
I finished lyme treatment 4 years ago and I am still symptom-free, enjoying my life.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Wow, thank you so much TF. So you attribute your remission to Flagyl?
Were you on anything else?
I'm doing the 250mg 3x per day, but pulsing 3 on 4 off. Now that I'm not herxing on this anymore, but still not feeling well, I'm thinking I should talk to my LLMD about changing it up.
Posts: 453 | From TX | Registered: Aug 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, my doc wanted me on zithromax along with the flagyl, but the zith gave me hives so I went on high dose amoxicillin with the flagyl.
This way, you are killing lyme in both of its forms at once. It has no way to hide from the meds.
Monotherapy (one antibiotic at a time) doesn't do the trick. (Read it for yourself in Burrascano's guidelines.) I wasted 2 years doing this with my second lyme doc. Then, I wised up and switched to a Burrascano type doc.
I believe in the Burrascano guidelines because that is what I have seen work for people over and over again. I have seen less agressive therapies fail over and over.
It doesn't need to take years and years for most people to get well. Get with a Burrascano doc and get rid of these diseases.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Congratulations on your recovery, TF. Can you go into more detail? Did you have/treat any co-infections? What other treatments did you use besides Zithromax/Flagyl? Does your LLMD believe that Flagyl is superior to Tindamax, or simply less expensive to the patient?
Posts: 690 | From East coast, USA | Registered: Jun 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Once I went up the "food chain" of lyme docs and got to my Burrascano type doc, I finally got tested and treated for my coinfections and treated for the cyst form of lyme also. It only took one year with the Burrascano doc and I was well.
I found out I also had babesiosis microti and bartonella.
I don't know why my doc chose Flagyl. He never discussed cost of meds with me. So, if I had to guess, I would guess that he prefers Flagyl.
Remember, this was 5 years ago now.
I won't post my entire treatment protocol on the public board, but if you want to know it, you can pm me.
The important thing about my treatment was that we followed the Burrascano guidelines. No smoking, no drinking, no caffeine, no sugar, no bread, etc. I ate basically just meat and non-starchy vegetables and drank lemon water for that year.
At some point in treatment I was told that I had to do the Burrascano exercise program or I would never get rid of my diseases. (This is to boost your immune system). It was hard. My major symptom was extreme muscle weakness.
It took me a long time to work up to a 1-hour weight-bearing exercise routine. I lifted weights in my basement along with some weight-bearing exercises. At first, all I could do was 10 minutes. It really was hard on me. I forced myself to do the exercises every other day, as per Burrascano.
I took the various supplements Burrascano recommends. I also ate lemons and lots of water as a cleanser, garlic (or Kyolic) to boost the immune system, and took Transfer Factor when my white blood cell count got low. I never had to stop antibiotic therapy.
I treated for about 5 months after all my symptoms were gone because I became symptom-free in about October, and my doc won't let anyone stop meds if it is winter or winter is approaching. He says winter is a stress on the body. So, I had to stay on meds until spring.
So, I say the doc is the key to getting rid of these diseases. And, the protocol has to be Burrascano for the best chance at recovery.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I am taking a bunch of other abx as well, but not sure I'm at a high enough dose with any of them, which I'm also going to address with my LLMD next visit.
Do you mind sharing how much amoxy you took?
Other than to help deal with herxes, does anyone know why we would have to pulse flagyl? Seems to me that once you got over the initial herx from it, you should be able to take it continuously.
Yet, many LLMD's (if not most) still recommend that we pulse, even once we stop herxing.
Is this just a myth that somehow has been put into widespread practice, or does anyone know of any studies showing the benefit of pulsing this med?
Posts: 453 | From TX | Registered: Aug 2008
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seekhelp
Frequent Contributor (5K+ posts)
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posted
I still can't comprehend why all docs don't suggest co-infection testing at least once IF the patient has funds.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
VB, my amoxi dose was 1500 mg 3 times per day plus probenecid.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Regarding pulsing flagyl, in Burrascano's 2002 lyme treatment guidelines, he said:
"Metronidazole is potentially neurotoxic. Peripheral neuropathy may result. Therefore, breaks in treatment are commonly prescribed, such as using this agent every other week."
However, he did not say this in the later editions of his guidelines. Instead, in the 2005 and 2008 editions, he said:
"Flagyl can be irritative to the nervous system- in the short term, it may cause irritability, "spacey" feelings, etc. Longer term, it can affect the peripheral nerves, causing tingles, numbness, etc. If mild, a change in dose may be required. Often, extra vitamin B can clear these symptoms. If the nerve symptoms persist or are strong, then metronidazole must be discontinued or these symptoms may become very long lasting."
So, I don't think there are studies showing the benefits of pulsing. I think that doctors still pulsing are either behind the times or are afraid of the patient getting peripheral neuropathy from continuous use of this med. Burrascano abandoned the recommendation to pulse by 2005 and instead tells docs what to do if continuous flagyl use starts to affect peripheral nerves.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
My LLMD (who follows a modified Burrascano protocol) has me on 500 mg of Flagyl, 3 times a day, 5 days on and 2 days off. I believe he plans to have me on this for 2 months. I have not been on it long enough to comment on its efficacy.
Although I still feel like crap, I have improved and the doc is pleased with my progress. Below is the antibiotic protocol we have used.
LN policies do not allow detailed description of protocols to protect doctors, and because a doctor should tailor each protocol to the patient (for example, since I am allergic to penicillin my doctor avoids these, although they might be preferable for those not allergic). I believe the below does not give detailed dosages, my LLMD is not identified, and info on additional medications (mostly antifungals and antioxidant supplements) are not provided. I am certain that someone will tell me if this is too much info.
Month 1: L-form antibiotic (doxy) Month 2/3: Doxy PLUS active (spiral form) antibiotic (Omnicef, then to Ceftin when I could not tolerate Omnicef well). Month 4/5: Ceftin plus cyst-busting antibiotic (Flagyl)
My understanding is that some of the above drugs will be rotated back in later in the year.
-------------------- Wildlife biologist working in tropics since 1997; tick bites in Nicaragua in March 2007, started getting sick May 2007; diagnosed with Lyme based on serological testing in Jan 2009; treatment starting Feb 2009. Wish me luck! Posts: 116 | From Seattle | Registered: Feb 2009
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I'd like to know what your symptoms were, as we all seem to have different complaints at the top of the list.
Mine are neuropathy, the burning kind. I have it in my neck and face. My neck has been the one thing that has impacted my life the most. Abnormal sensations in my neck, like extreme pressure on the right side - feels so horrible that I find myself not wanting to eat, speak, swallow.
Nausea
Severe irritation and anger
Weakness in hand and leg
There's a million more but if I could clear those things, I'd be happy.
Anyway, mind sharing your sx?
I was on Flagyl 3x daily for about 2 months. I.V. Rocephin for a month of that.
Herxed off of the Rocephin horribly. Insurance only paid for 30 days. No improvement.
Now no money and no llmd.
Posts: 63 | From Hell - Or at least it feels like it, Oh, I mean Tampa, FL. OOOps! :D | Registered: May 2009
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springshowers
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posted
I still am not clear on Why and how Flagy is pulsed.
It seems everyone has different experience or take or is told something different.
If anyone has any real solid information of why and how that can be shared.. i would appreciate it..
Thanks . much
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