Intermittent Protocol

I spent a couple of hours this evening trying to figure out what an intermittent protocol might look like - and finally found the details in Sarah's story on David's website. Thought I'd re-post to save others the trouble if they are using the search on this site.

From: http://www.davidwheldon.co.uk/updates.html<

----

Dec 2004

"Sarah stopped the continuous antibioticsi two months ago. Improvements continued after they were stopped. We have decided to give a discontinuous maintenance therapy of 14 days doxycycline 200mg daily and roxithromycin 300mg daily*. Metronidazolei, 400mg three times a day, is given for the final five days. This maintenance schedule is to be repeated at two month intervals."

*If roxithromycin is unavailable, azithromycin may be used. Rifampicin is not suitable for intermittent use.

----

I have some questions with respect to intermittent therapy, as I'm unsure that my doctor will support antibiotics indefinately. I wonder if anyone can help.

Are there other standard CAPi intermittent schedules?

Do people 'take a break' from continuous antibiotics with a period of intermittent therapy? Is this advisable?

On this site people have been on CAPs for fairly short (1 year or so) to much longer times e.g. 5 years or more. I still feel worse when pulsing - generally more tired, more easily upset and usually experience bad asthmai (which is a side effect of tinidazole - the antibiotic I pulse - but I guess it's possible that the side effect is a result of killing CPni). Is there a way to tell if its time to go intermittent? Does it differ for MSi or ME/CFSi? I have heard it said that CFS sufferers often have a higher CPN load.

Is there a practicing expert that my doctor (a PCP/GP) could ask questions of? I know of Stratton (I heard it is hard to reach him now) and D W (now deservedly retired). The ME/CFS center at Stanford used to have information on CPn (https://web.archive.org/web/20170228000756/http://med.stanford.edu/chron...<) but now does not - I am not sure if anyone has experience with them. Is there anyone else with specialist experience on CAP?

OK maybe that's enough questions for one post Smile.

CAPi I am using is as follows:
-Doxycycline Hyclate 200mg twice daily, started 03/2016
-Azithromycin 500mg once daily, started 03/2016
-Regular 5 day pulses consisting of 500mg Tinidazole twice daily for 5 days (as tolerated), started in aug 2016 - now up to around 20 pulses
- +4g Cholestrymine USP 2x daily, 1x daily ultra-binder (basically activated charcoal) - cholestrymene atarted only around Easter 2017
-NACi 1200mg 2x daily
-Many other supplementsi incl. B12, methyl folate">i, D3 (not high dose) etc.

Hi JR,

I am now on intermittant protocol-4 weeks off, 4 on with a 5 day Flagyli pulse. I've been on CAPi for 3 and a half years and no longer have reaction to pulsing other than being dehydrated. I think there is a chart somewhere on this site with intermittant protocol. I am doing bloodwork monthly during the cycles. Just started so I hope it will work for me.

Chloe 

Hi JR!

Perhaps it's because you wear a ten gallon hat ... or perhaps it's that you just do everything big in Texas. Did I read that right; you are talking 500 mg of azithromycin every day? Mere Brits like me are only up for taking 250 mg of the stuff three times a week. That is a big difference!

Smile

G

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

JR, David would willingly expain the reasons for both pulsng and intermittency to your doctor.  You can find his email on his website.................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Supaguy: Yes I really am taking a lot of Azithromycin - it's basically because my doctor is a Lyme doctor and they are doing a mix of the protocolsi on this site and their standard Lyme protocol. They're also a bit nervous about me doing more than a year of antibioticsi - becuase I think they usually only do a year of their protocol. To keep the Dallas joke alive (for those of us old enough to remember the TV show) - apparently a real JR quote: "When your holding a double barrel shotgun use both barrels." (Note to others - I am actually a mixed Brit/American and live in New England - but hey the Dallas fantasy is more fun! Yee haw...). Maybe I should try to drop the dose for the sake of my liver...

Chloe: thanks for the info - I guess waiting until the pulses don't cause symptoms is a good way to decide to go intermittent. Hopefully my doctor will check with David. Good luck...

Sarah/David: Thanks so much - I will see my doctor in mid Dec - and will try to get her to write. I'd like to keep at the protocol as it seemed to make a significant difference intially.

All Americans: Happy thanksgiving y'all!

Comment viewing options

Select your preferred way to display the comments and click "Save settings" to activate your changes.