posted
I just had my 2nd appointment with my LLMD, who works at a well-known lyme practice in Northern Virginia.
They want me on antibiotics for 3 weeks then a week off every month. They said it was to let me body see if it can fight off the rest and give my body a break since it is a marathon not a sprint to being healthy.
I am new to these boards, but have ever heard of anyone talking about this kind of treatment. I am concerned it is not agressive enough.
I am on my off week now and I must say it was really nice to go off the medicine and feel my brain back to normal (or normal pre-antibiotics) and I do feel like a am getting my body ready for the next fight starting on Sunday.
Anyone else follow this type of plan? or have concerns about it?
Thank you!
Posts: 24 | From Virginia | Registered: Mar 2011
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posted
When our daughter was taking multiple combo abx (including tindamax) we had to pulse, although we used a 3 days on 4 days off protocol.
She was unable to detox from continuous dosages and her die-off (Tourette's-like motor/vocal ticcing, emotional lability) kept getting worse with no resolution.
When we initiated the pulsed protocol she had the chance to detox and recover. We noticed that each successive herx, upon restarting the abx, was smaller than the previous one had been. When there were no further herxes, she was weaned from treatment.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
This type of treatment is unique to your lyme doctor. He created it.
Your doctor believes in exposing the immune system to lyme (letting it "get a peek at the germs" as he calls it) from time to time by having you stop antibiotics. He does this to strengthen the immune system so that it can, hopefully, eventually be able to deal with the lyme on its own.
He gradually weans his patients off of antibiotics, from what I am told.
I don't know how successful this unique protocol is. Most of the folks who have gone to this doctor and have written to me have eventually moved on to other doctors.
If you want a doctor who follows the Burrascano protocol, let me know and I will send you a name. Just click on the envelope icon above my post and send me a private message.
It is a high-dose, combinations of antibiotic protocol. The patient does not stop antibiotics until they have been symptom-free for 2 months.
The patient strengthens his immune system with supplements, clean living (no smoking or drinking), no immune suppressants (steroids, cortisone shots, etc.) and non-aerobic exercise for 1 hour every other day. (See page 31.)
However, you may do well with your current doctor. So, you may want to give it a try. His treatment is generally aggressive, so that would not be a concern normally.
If you respond to this on/off treatment, that is all that matters.
If the patient gets sick during the week off, then you will be told to go back on meds after say 3 days instead. Then, try to work up to a week off. Then, work up to longer and longer times off.
That is what you can expect at this practice.
He also advises patients to take antibiotics for 1 week per month for 2 years as "maintenance treatment." This is what you will be told once you are able to work up to 3 weeks off of meds.
After that 2 years, you are finished.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You should ignore everything I wrote in the post above because you are not going to the doctor I thought you were going to.
The practice you are in is a "low dose" practice.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
"Pulse Dosing. Some prescription antibiotics can be given using pulse dosing. The idea is to start and stop the antibiotics. This allows the body to recover from the toxicity of some of the drugs while providing effective killing of the germ using high doses. Lyme is a slow growing germ. The spirochete form only requires 2-3 days for some antibiotics to work and days to recover and to start growing again. All of the antibiotics mentioned in this article can be pulse dosed except for azithromycin. One way to pulse is to use 4 day on and 3 day off regimens. Many physicians have different ways of pulsing antibiotics."
Posts: 2839 | From California | Registered: Jul 2012
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Yes, I am seeing one of the top llmd's in the country and this is what we did towards the end of my abx treatment. Gradually extending the time off. Worked well for me.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
In my opinion the major problem with pulse dosing would be if a patient had bartonella or babesia. In my opinion neither of those infections should be treated with pulsed meds. Bartonella has a very fast replication cycle in comparison to lyme -- most patients will generally start feeling worse within 2 or 3 days off meds. And for babesia pulsing meds could lead to drug resistance.
As far as lyme, it may or may not work as a treatment strategy. I don't think there is enough data to say at this point.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I am pretty sure I know who you are seeing. I went to that doctor first and ran from that practice.
Pulsing does not work for everyone. Also this doctor doesn't believe that you ever get better. When you reach remission, you will be on one week of abx each month for two years.
Doing that, you will never get rid of candida.
My husband and I did not get better with this protocol and went to another LLMD in the area. If you would like the name of who we saw, send me a pm. We are both in remission now.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I have only heard of pulsing with tinidazole.
Also with IV ceftriaxone.
But I agree with Bea that pulsing should not occur with Bart meds. Have read SO many posts about quitting a Bart med for a while and then when resuming the med, it is not effective.
I personally, wouldn't want to go to a doc who believes lyme cannot be beat.
To me that means that doc hasn't seen any of his/her patients get well permanently.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Faithful, she is going to a practice in Va. It is a low dose practice.
I know it sounds like the doctor you went to, but it isn't!
Posts: 9931 | From Maryland | Registered: Dec 2007
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