posted
I had been seeing an llmd in virginia who pulses abx, but didn't feel it was aggressive enough.
I was on abx for 3 weeks, off everything 1 week a month. (Which is a nice break!)
I was taking minocycline everyday, cefdinir mwf, clindamycin mwf, and flagyl 3 days of the month consecutively. Then stopped a for a week. Then back on 3 weeks.
My new llnp in dc wants me on cefdinir, bactrim and biaxin everyday and timdamax (on one week, off the next). No breaks (except tindamax).
I am thinking my new treatment plan is better to get the bugs, any opinions?
I was only at my other llmd for 4 months but never felt right about pulsing.
Posts: 24 | From Virginia | Registered: Mar 2011
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I love pulsing! It gives you a break both physically and emotionally. Many Lyme docs are starting to do that.
Four months is really not long enough to give a treatment to start working. I would encourage you to follow who ever you end up working with and be careful about online advise. We pay big bucks to the Lyme experts, that is who I listen to.
Posts: 1687 | From Maine | Registered: Jun 2004
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posted
Thanks for your response! I realize 4 months isn't a long time to expect results, but want to make sure I have the best treatment plan. I hadn't heard much about this pulsing method and have heard so many good things abou dr. Bs method so was thinking that was better for me.
I do like the pulsing method meaning it is nice to have a week off and my doctor says this is the future of lyme treatment (just not sure if that is real? He does have a large practice in the northern va area). Have you been pulsing for a while? Have you experienced good results? Thanks again!
Posts: 24 | From Virginia | Registered: Mar 2011
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posted
Yes pulsing meds and ramping up slowly especially using tindermax. i started with half a pill for a 4 on 3 days off , then eventually a full pill, and have been doing 2000 mg a day .
Keep a journal of meds you are taking and rate from 1 -10 on how you are feeling ,and symptoms you currently have and new ones also . and on days you dont take anything rate that also
This way the doctor and yourself can see what is affecting you whether a herx or a side effect of meds.
sometimes with my pulsing it will 3 days on 4 off . 5 on 2 off depending on medication and especially
be careful of any type of gemifloxacin medication that can rupture your tendons , but with my experience of pulseing that med and taking magnesium 1 hour before 2 after , never had tendon issues '
Posts: 238 | From Where | Registered: Aug 2012
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
LostLyme has some good advise, especially about journaling your response to the treatment.
I have had good results with pulsing. I think the only bug you should not pulse for is Babesia.
Posts: 1687 | From Maine | Registered: Jun 2004
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You are with one of the best LLMD's now. I started right where you did with the same doctor. My husband and I did not get better with pulsing but we did see results with the LLNP you are with now. I would do as she says and just be patient.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Thank you for all of the great replies! Both LLMThank you for all of the great replies! Both LLMDs think I probably have Babesia and maybe Bartonella co-infetions, so maybe pulsing isn't the best idea for me?
And we were pulsing antibiotics by taking Monday Wednesday and Friday for 3 weeks, then one week entirely off. Pulsing sounds likes it might work better taking 3 or 4 days in a row and then taking a couple days off, then back on?
So confused, just want to make sure I get this bugs - but don't think there is a one size fits all treatment plan unfortuantely.
I do like the idea of strengthening your immune system and gut with a week off. Oh well, I have a decision to make!
Thanks agin!
Posts: 24 | From Virginia | Registered: Mar 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Dr. Burrascano doesn't believe that taking a week off strengthens your immune system.
He says that you do non-aerobic exercise to strengthen the immune system--1 continuous hour every OTHER day.
So, don't treat it as a fact that this week off will strengthen the immune system. That is someone's opinion. I have never seen any study that says this will happen.
I suggest you read and STUDY the Burrascano Guidelines and decide if you believe in the Burrascano protocol. It is the protocol that got me well and about 5 of my friends. So, I believe it because it worked for me.
I have been rid of lyme for over 8 1/2 years now. And, I had it undiagnosed for at least 10 years.
You really have to decide what you believe and then go to a doctor who lines up with your beliefs. There are many different protocols based on entirely different beliefs.
Burrascano was the most successful lyme doctor on the planet. They came from all over the world to see him.
He doesn't pulse anything except IV antibiotics--taken 4 days in a row each week, with 3 days off. (page 16) Start reading at page 18 to see the requirement to take antibiotics DAILY and at high dosages. Start reading at page 12 to see the requirement to take 2 different antibiotics at once to treat lyme disease.
Start reading at page 31 to hear how non-aerobic exercise strengthens the immune system.
It really pays to be an educated patient when it comes to lyme disease. You are with a top doc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I don't have big opinion on the issue, and I never pulsed. In fact, my doctor did antibiotic combos for lengthy periods before switching it up.
But, I think the major focus of pulsing is not to "strengthen the immune system" but to fool the bugs into coming out..
The idea is that there are "persister" cells that lie dormant and only come out when not treating, and the pulsing is to trick them to come out.
I'm looking forward to an updated protocol from Dr. B. He's great and I can't wait to hear how he integrates the newer research.
Good luck everybody. Mary
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
marypart, hokiegirl's doctor had her take a week off of antibiotics every month to strengthen the immune system. That is what she said. And, I have heard of this doctor and his theory on this. Believe it or not, there is a doctor in this area that believes that.
So, I was addressing her specific statement and case.
Other doctors may pulse for other reasons, but this is the reason her doctor gave her (plus helping the gut).
Posts: 9931 | From Maryland | Registered: Dec 2007
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Yeah, I've heard doctors (not mine) say that they pulse to "help the immune system see the bugs" which is not scientifically exactly what they mean, I don't think. I think what they mean, is to make the bugs come out and be more visible to the immune system.
Who knows, maybe pulsing works, but I vote high-dosage antibiotic combos that cover the various stages of Lyme and the co-infections, plus stuff for fungi, viruses and parasites.
Mary
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Mary pat i am so glad you said that. I know i am getting old and getting worse...but reading those first threads had me thinking i was going crazy
Things are changing so fast i cant keep up but i still know the basics and i was really questioning myself until i read your reply
I did high dose abx combos for a year without flagl...then with...but at the end it was a full yr of pulsing. 4 dys on 3 off
I was taught pulsing was to fool the bugs into coming out of cyst-the same thing as flagl and tini
But it is hard to keep up with the changes and also hard to figure out what is real...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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