27 Apr 2018
Author
viralfree
Title

Confused by Mini, Tini, Rifamcin or Flagyl

Body

Hello,I've been on NAC 1200mg daily + Doxy 100mgBid + Azithromycin 250mg MWF, segueing Azithro to 250mg daily.  This is over the course of 4 months.  My only side effect was neural pain in the bottom of my left heel and more fatigue.  I do feel the neural pain on days i'm more active and taking the Azith.    Now it's time for the pulses.  I've read the Stratton/Wheldon/Powell protocol document and many member postings.  Some use Mini, some Tini, some Rifamcin, and some Flagyl.  I would appreciate member comments on why one medication was chosen over the other and if anyone is rotating the p

Comments

A pulse abx is either Flagyl (metronidazole is its generic name) or Tinidazole, the others you mention are not abx used for pulses.   They are sometimes used in addition to or replacing one of the antireplicative ABX.    You really need to go read the Getting Started module (tab at the top).

The difference between either of them is cost, and personal preference.   Some people feel that tinidazole causes them less depression than metronidazole.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Thank you.  This does offer some clarification.  I've reviewed the getting started tab, the side-by-side protocol comparisions and have read many articles & postings, many several years old.  But I imagine my brain fog just hasn't been able to connect the short-hand terminology with what i've been reading. 

A CpN physician I've met with (suggested on this board), after commencing NAC & Doxy, prefers a ton of supplements prior to wading in to these protocols, so this has only added to my confusion. The MD stated that many patients back-slide and need methylation supplements in order for CAP to work.  As a super user, what is your take on vast use of supplements with regards to CAP success?

 

 

 

ME. HHV-6, EBV, CpN, EV.  Valcyte (9mo.'07-'08).  4gr Valtrex (since Nov '08). 2400mg NAC + 200mg Doxy 8/08; added 250mg Azith 12/08; 1st Flagyl pulse 2/09. 6K Vit D.

My perspective is that the supplements provide nutrients for repair when they are needed by our bodies during the course of working the infection out of our system.  If you take each one and study it you will see why each is recommended, you get to check it out and do the investigative work so to speak about why it is there.  You MD may be very wise and have seen many folks quite from being unwilling/and or unable to tolerate the experience of getting sicker to get weller.  I was darn stubborn, know that there was not other game in town for me, bit the bullet and was sick for 4 months.  I was marginal at best prior to tx, I could ratio my energy with expert moves that had everyone but myself fooled that I was better than I was.   Over a year into tx I started the simple form of methylation support which has personally added improvement for me and I use cholestyramine if I find my porhyria load increasing.  There is currently no way to rush these protocols it took years to get ill and it takes a few years to do the treatment.  We all want an easy way and from my vantage point I could see none other with the kind of hope I found here.  And 18 months later it has panned out for me, I have struck a few nuggets of gold and believe that I am on my way to getting my life back.  Hope you join us, folks here are straightforward and helpful.  We don't all agree on everything so you get a good overview of answers.  Still one has to self educate there is not way around that one to have a successful treatment, you have to know why you are making yourself sicker to get better to get through the process.

I chose tini as the side effects of that form of nidiazole class drug has less side effects in my observation, and it is recommended twice a day not three times a day as metronidazole is.

I will be looking for your report of your experience.  Louise

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Thank you for your perspective Louise.

ME. HHV-6, EBV, CpN, EV.  Valcyte (9mo.'07-'08).  4gr Valtrex (since Nov '08). 2400mg NAC + 200mg Doxy 8/08; added 250mg Azith 12/08; 1st Flagyl pulse 2/09. 6K Vit D.

You would do well to read Dr. Wheldon's pages. The site lays out the protocol and it tells you why one should be taking each supplement or adjunct. Here's the link: http://www.davidwheldon.co.uk/ms-treatment.html 

You should be taking doxy and azith. Then, when you tolerate them, and NAC, well, you add in 'pulses'. When you first start pulsing either metronidazole or tinidazole, you do it TENTATIVELY, starting with one pill.  You may have a big reaction to just the one pill, so you start cautiously. 

Ultimately, you are aiming for 1200-1500mg a day of metronidazole or tinidazole, which you will take for five straight days out of each month.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

The dose suggested for Tinidazole is 500mg, twice a day, metronidazole is taken three times a day.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

VF,

Everyone answered you on the supplements and pulses but nobody asked why you were taking Zith DAILY.  Why are you taking it daily?  Is your Dr requiring it?  

Awhile back someone was taking 500 mg instead of 250 mg and Jim K said he did something like that by mistake when he first began so I just want to be sure you know that the dosage for Zith is 250 mg, MWF, not daily.  Image removed.

If you use THIS page and use the Wheldon Protocol, that's where you will find dosages and which antibiotics to substitute.  Most people start with the Wheldon Protocol and then add to it or change later on. 

I'm using mino instead of doxy because I was familiar with it and was comfortable on it and Stratton said it was fine.  I may switch to doxy at some point because it's alot cheaper and works fine too.    

At some point, you'll want to increase your dose of NAC to 2400 mg too. 

PS It looks like your sig line is out of date since you say you've been on CAP now for awhile.   Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, ValcyteSupplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons Don't believe everything you think!  

Reenie,

Thanks for your comments.  With these postings i think i've got it.

Actually I have been on Doxy for 4 months and in November met with as CpN physician listed on this board.  He didn't want to start a CAP even though i had been on NAC at 2400mg for 3 months + 100mg Doxy BID + a host of other anti-biotics in 2007, due to several bronchial infections that i could not shake.  

I finally convinced the MD, after wanting to add 10 supplements, to prescribe the Azith MWF.  After a second appointment and no real bottom-line answers from the MD re: CAP, i called Dr. Stratton and spoke with him.  He recommends Azith daily, if the body can handle it - so far mine can.  I now plan to have another physician prescribe the pulses, but was not sure of the differences between the two.  The physcian has experience with Lyme.

This site is SO choc full of information, some dating back a few years, it was just a bit overwhelming.  Thus I appreciate everyone's response and clarification. 

Dr. Stratton and I also discussed the use of INH and my virologist explained why physicians are not comfortable with the medication.  Through a site search I noted somemembers have used it, although it seems to have been a few years ago.  Thus my second post, if anyone has had experience with it...just curious.  

 VF&BF

ME. HHV-6, EBV, CpN, EV.  Valcyte (9mo.'07-'08).  4gr Valtrex (since Nov '08). 2400mg NAC + 200mg Doxy 8/08; added 250mg Azith 12/08; 1st Flagyl pulse 2/09. 6K Vit D.

Viralfree, Just to clarify - Did Dr. Stratton prescribe azith daily for you, specifically, or does he now prescribe it for all his patients?

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Reenie - I see what you mean about my treatment signature.  Odd, i updated it and it shows up in my profile.  Perhaps it's just this thread!

ME. HHV-6, EBV, CpN, EV.  Valcyte (9mo.'07-'08).  4gr Valtrex (since Nov '08). 2400mg NAC + 200mg Doxy 8/08; added 250mg Azith 12/08; 1st Flagyl pulse 2/09. 6K Vit D.

VF,

You put your update in the personal statement area instead of on your signature line.  No worries:  

ME/CFSi/CpNi.   For HHV-6 & EBVi - completed 9mo. Valcyte.  For chronic EBV, currently 4gr Valtrex (into month 4). For CpN, commenced: 2400mg NACi & 200mg Doxyi 9/08; added 250mg Azith MWF, 12/08. 

As for Stratton, I would like to know if others know of the update to taking more Zith.  I've never heard of taking it daily.  Does anyone else know of this?  Do we need an update on the chart for dosing?  

Thanks. Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, ValcyteSupplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons Don't believe everything you think!  

VF, did the subject of clarithromycin (Biaxin) come up in your conversation.  It is a daily dose macrolide and highly used in the LLMD community?  Louise

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

I haven't spoken to Dr. Stratton in a couple of months, so I haven't heard if he's thinking differently about Azith dosing. Something I'll have to check with him about, as it may have been patient-specific.

You are correct that there's too much info here! It's a blessing and a curse, both. The trouble is that redoing it takes more time than anyone has currently.

I was put on a half dose (150mg) of INH for a while by my doc, and it made a real difference in bringing my recovery up a notch after a year of treatment without it. I haven't taken it for a while, but recently used it during a couple of Tini pulses, as Dr. Stratton has suggested, and found I was tolerating it well. It was shown in the original Vanderbilt research to be very effective at clearing the immune cells of Cpn, something I think a lot of us with CFS/ME often have problems with. Liver enzymes have to be monitored at least monthly, however, so it's not one to play with.

 

Jim K, my doc told me to take the azith every day also.  And the flagyl every day.  Needless to say, I decided to do the MWF azith and just did a 1 pill flagyl so far.  If I took all of the dox, azith and flagyl everyday I think I would be in the hospital.  Would be curious to know if the azith change is now the protocol or just certain docs prescibing it that way.

FMS/CFS 1995. tinnitus, ibs, sinusitis, EBV, NAC 2400mg, valtrex, cortef, armour, doxy, biaxin, tini, vita c 5 - 10,000 daily 

Lynn,

Your Dr sounds like most Drs; they don't know these combos of abx and how difficult they can be!  I agree if you took all 3 as your Dr wanted you to, it would be too much.

FWIW, my Dr told me nearly the same thing when he rx'd them for me, but he had no clue.  He just told me to start one at a time but he meant to take them ALL together each day by the end of the third week!  Obviously, I didn't.  Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, ValcyteSupplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons Don't believe everything you think!  

VF,

Don't worry about being confused.  I'm still confused about all of these different meds and their abbreviations.  Cpn is a very complex bacteria and the treatment is complex.  Its a lot to absorb in our foggy state.  I started the CAP in Sept.'07 and for a lot of reasons (too long a story) I'm about to do my first pulse so I too have been looking closely at the meds.

At the end of your message you said

And if i understand correctly, the first pulse is one day, and pulses are once a week...not sure on this. Guidance on pulsing would also be appreciated.

Just to clarify.  The pulses are done every 3 to 4 weeks, not once a week. 

Good luck to you VF and keep us posted.

Marcia

 FMS/CFS 12 yrs., IBS, Hypothryoid, EBV, CMV, Sleep Apnea, Cardiac Arrythemia, Sjorgens, Depression, Brain Fog, Cpn, On and off CAP since 10-1-07, Currently on NAC & Delta Fr. E Doxy., Cipro, Acyclovir, Cymbalta, Lyrica, Celebrex, Synthroid, Lipitor,

Until we hear from Dr Stratton that he has changed the protocol I suggest we stick to what we have tried and tested.   In any event, Dr Wheldon is probably more in touch with the effects of the ABX as it was he (correct me if I'm wrong Sarah) who adapted the protocol to make it more tolerable to us guinea pigs. 

I have taken INH for a short period, but found it impossible to take for more than a couple of days at a time, (horrendous heart burn and marked die off) so do not take it any more.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

My feelings when your prescribing doctor offers you more than you will take at the time: accept, check the expiration date, keep it, and work it into your schedule. So many of us have problems just GETTING the abx and, as remarked several times for ridiculous reasons, doctors back out or change their minds. My watchword: HOARD. Whatever you have may come in handy.

Rica

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Totally agree, Rica.  I know I got chastised for suggesting this in the past, but it's a fact of our lives at this point.  Having a cushion of extra meds is never a bad thing.  While I now have a prescribing doctor, I hung onto that first batch of internet-purchased doxy until the expiration date had passed!!

Despite having a prescribing doctor, I used many of those 'extra' pills to 'bridge' the times I simply couldn't get to the pharmacy to pick up my next month's refill.  It's also good insurance against the pharmacy not being able to fill a prescription due to shortage (which has happened to me with azithromycin, twice).  I hoard, too.  Image removed.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Wow - thank you for all your great feeback and recommendations!

First, i would like to note i took Azith for 10 days w/o any major side effects (due to a persistent bronchial infection) and have been on Azith MWF with the only side effect being slight mania (!) Or maybe the Valtrex is kicking in (after viral die-off, although my titer is 1:5250 - extremely high) and perhaps i'm not familiar with 'normal' energy. Image removed.  Thus, i'm comfortable taking Azith daily, but only after i start my first pulse this coming week to learn what side effects it illicits. 

MacIntosh - Dr. Stratton & I spoke in general terms, the jist being take what your body can tolerate, working up to doxy/azith every day is ideal.  He said it doesn't matter which anti-biotics, take the least expensive ones.  Same for NAC, he stated the cheap, non-time released one is just fine. 

Rennie - thanks for the signature tip.  I finally found it & changed it several times but only part of it shows up!  

 Louise - Biaxin did not come up in conversation with Dr. S, but please see my comments to MacIntosh. My understanding is that physicians come to prefer one over the other.  I'll have to ask my prescribing physican - especially if it's less expensive.  Noteworthy (but something I don't understand) of Azith,  from Wikipedia: Azith is "Unique (from other macroglides), does not inhibit CYP3A4" . 

 Jim - thank you for your feedback on INH.  At this time i'm just going to start my first pulse, and want to see how i respond, but was interested in INH since Dr. Stratton strongly recommends it. And yes, my liver enzymes++ are well monitored given the potent anti-viral. Maybe when you speak w/Dr. S you can inquire why Azith over other macroglides - I found the above curious. 

Marica - thanks for clarifying the time frame for pulses of every 3-4 weeks. 

 Michèle -  thanks for noting your side effects of INH.  As i proceed this gives me a basis for what to anticipate.  

 

 

ME. HHV-6, EBV, CpN, EV.  Valcyte (9mo.'07-'08).  4gr Valtrex (since Nov '08). 2400mg NAC + 200mg Doxy 8/08; added 250mg Azith 12/08; 1st Flagyl pulse 2/09. 6K Vit D.