pulse 16 + Rifampin

I'm on the eve of my first nervous pulse since starting the protocol, oh these 18 months ago.  Pulse 16 is ahead, to begin on Saturday.  I'm a bit nervous because there have been people here who mentioned that doing a pulse while on Rifampin was rough in comparison to doing it while not on Rifampin.

Maybe I shouldn't be worried?  Really, there hasn't been anything dramatic in a negative sense since I started Rifampin.  I've had a couple of bad days but more likely those were due to weather (it was hot) or having my gym schedule disrupted so that I didn't go for some reason.

While I'm nervous, I'm also excited.  This could provide improvement in things but whether it will or won't is anybody's guess.  My progress so far has been woefully slow but definitely progress.  Of course, if I were to have some dramatic improvement it would likely come at the cost of being utterly miserable and by feeling terrible for a period of time, so maybe I should be happy that it's progress regardless of how fast it's taking.

Now to figure out how to balance taking all the antibioticsi while concurrently taking Rifampin and taking Metronidazolei.  I think I have it worked out.  Here is what I will likely do.

5:30 am metronidazole, naci<
7:15 am vitamins 
9:30 am doxyi, azi, rifampin, nac 
3:30 pmrifampin, metronidazole, nac 
9:30 pm metronidazole, nac 
11:00 pm probiotic 

Of course, I will only take Azithromycin on M, W, F of each week.

 

John

 

Comments

Yeah! Thanks John, for the

Yeah! Thanks John, for the heads up, if I ever take Rifampin I will have to do it cautiously, as the nasty taste of Metronidazolei is practically unbearable at the end of the 5 days... If rifampicin makes it worse its going to be a hard one for me.

Pleased that you are noticing reactions though...

Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Oh boy, oh boy! I

Oh boy, oh boy! I especially like the part about trouble walking. And the aches and pains are really good, too.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 44 pulses NC USA

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

Glad I could oblige, lol! 

Glad I could oblige, lol!  Hopefully, as you indicate, these are all good signs.  Time will tell and I'm in it for the long haul.  I can't wait for the day I can put down the antibioticsi and step away, but that day hasn't come yet. 

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

John - Thanks for so

John - Thanks for so reliably cataloguing your Rifampin experience!   

 I am glad you got a reaction , which sounds mean ,I know but it seems to indicate that for your pain you will likely experience some gain!   All the Best!  Daisy

Daisy-Caregiver- Balo's Concentric Sclerosis. Began CAPi 5/10/07. Doxyi 200 mg, Minoi 100 BIDi 9/1/07, AZI 250mg QDi 9/10/07, NACi 1200 mg, HD Flagyli Pulses, Novantrone, Prednisone & daily lb of supplementsi.

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012. 

Pulse 16 is over and I'm

Pulse 16 is over and I'm back to the regular daily CAPi only.  I've definitely learned a lot about how I react to Rifampin+Metronidazolei+NACi+Azithromycin+Doxycyline.  In the past, no reactions at all, but then, Rifampin wasn't in the picture.  Now I get the following:

- a swollen head feeling the first 2 - 3 days of the pulse, almost like a balloon

- very sleepy when taking a dose of Rifampin while on metronidazole

- more aches and pains from the past rearing their heads, things I had long forgotten about

- the first ever time I remember having a graphite/pencil lead taste after taking metronidazole - not strong, but enough to notice

-  increased trouble walking, not greatly but enough to be troublesome

So, that's what comes to mind at the moment.  I may be overlooking and omitting something.  If so, I'll come back and write an update.

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazole) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

John I never thought of you

John I never thought of you as Sleeping Beauty...  :-|

Interesting...

Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyli at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

All good, John. Try to

All good, John. Try to sleep. Sleep fast.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 44 pulses NC USA

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

Well done, Rica. Sleeping

Well done, Rica. Sleeping fast gets you to the next thing you need to do a little sooner. Wink

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

An update - day 2 of pulse

An update - day 2 of pulse 16 has lead me to believe something different is happening with this pulse that has never happened with previous pulses.  After taking Metronidazolei, I am very sleepy each time.  Actually, I correct myself.  More correctly, after taking Rifampin I have been very sleepy each time while doing this pulse. 

Before I started the pulse yesterday morning, I wasn't noticing any particular increase in being sleepy on just Rifampin.  I was a little sleepy last weekend during the day but it wasn't so obviously tied to taking Rifampin or any antibioticsi.  It has been so while doing this pulse.

I just took a short nap (45 minutes) after taking my second dose of Rifampin and metronidazole for the day.  I only have 1 more dose of metronidazole for later tonight.  I'm also taking NACi each time but have never had anything like this kind of reaction to that ever.

Anyway, hopefully it's a good sign.  I like to sleep, but I do need to get going, so I'll keep you posted as I start the work week tomorrow.

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazole) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Ruth           

Ruth           

They are totally messing with you.  To do that test, you need sunlight.  It might work if you have a sunlight directly above the urinal but I highly doubt it. 

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

those damn witches, I am

those damn witches, I am just going to have to click the heels of my red shoes together & see if they will be punished, or I disappear.

Cool

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 8-21-07 1st pulse 1 X 250 mg Metroi<

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

YEAH JOHN!! I am wondering,

YEAH JOHN!!

I am wondering, if you pee & leave it in the crapper for a few hours & it turns a dark colour, can one construe that as a good thing porphyriai or are the witches messing with me???Innocent

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 8-21-07 1st pulse 1 X 250 mg Metroi<

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

The good karma of this group

The good karma of this group have helped me out of a bind  here.  My pharmacist was willing and ready to fill the prescription for me, which was miraculous, to say the least.  When I got to the pharmacy last night, it turns out that the doctor's office did a late refill on Friday night, which came in shortly after I had talked to the pharmacist on the phone.  This was completely unexpected and took me and the pharmacist by surprise, completely.

So thank you all for helping me out with the good wishes.  I'll be sending the doctor and his nursing staff and big thank you for coming through for me. 

Oh, and to add, the prescription has been set with 5 refills beyond this one, so it shouldn't happen again soon.  Again, unexpected by very very much appreciated. 

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Finally! I have enough

Finally! I have enough trouble keeping track of the three meds, which I get from three pharmacies to keep the prying questions at bay. I'd go nuts if one or more of them was late or stalled in delivery somehow. Your roadblocks sounded really frustrating and annoying. (This is not what sick people need to be dealing with.) Glad to hear it's fixed.

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

John, My dr. recently up my

John, My dr. recently up my flagyli script as you are discussing and this solved my problems. I told her I am trying to stay to the every 3 week schedule so she gave me a little more. I thought I had pharmacy problems but they are nothing compared to yours - glad to hear script finally made it. On Wheldon protocol for MS since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDNi 2004

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

John - I also wanted to say

John - I also wanted to say that I am glad to hear your gaurdian angels are watching out for you and the pharmacist decided to go ahead and refill your rx.  I have had pharmacists do that for me before when they know it is a regular rx that you take as long as it is not a controlled substance.

Lynda....CFSi/ME, Fibromyalgiai, IBSi, Hypothyroid, Lyme, CPNi, Diabetus Insipidus(DI).  Started Stratton Protocol 8-06; Daily amounts: NAC 2250mg, Doxy 200mg, Flagyli pulses 1500mg for 5 days, Azith 250 mg MWF,LDNi,Armour Thyroid, Klonopin, DDAVP,supplementsi.

Lynda- ME/CFSi, Fibro, IBSi, Hypothyroid, Lyme, Cpni, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NACi 2250mg, Doxyi 200mg, Flagyli pulses   1500mg- 5days-every 3 weeks,

Rica, John and Michelle -

Rica, John and Michelle - Thank you for the answers.  This whole protocol can be very complicated when you are trying to figure it out mostly on your own since my doctor has never prescribed this before.  We are learning together.  I am so glad to have a place to get guidance. 

John - I think that I will have to sacrifice what little efficacy I might lose by taking the abxi after a meal, because of my gastrointestional problems I not only feel nauseated but shaky, weak and like I am about to faint.  Not a good scenario if I am driving or trying to take care of a young child.  Like you said  - everyone has to fit their abxi schedule into our lives the best way we can.  I do appreciate your desire to get the most out of the abx. 

Lynda....CFSi/ME, Fibromyalgiai, IBSi, Hypothyroid, Lyme, CPNi, Diabetus Insipidus(DI).  Started Stratton Protocol 8-06; Daily amounts: NAC 2250mg, Doxy 200mg, Flagyli pulses 1500mg for 5 days, Azith 250 mg MWF,LDNi,Armour Thyroid, Klonopin, DDAVP,supplementsi.

Lynda- ME/CFSi, Fibro, IBSi, Hypothyroid, Lyme, Cpni, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NACi 2250mg, Doxyi 200mg, Flagyli pulses   1500mg- 5days-every 3 weeks,

Michele      You must

Michele     

You must have stirred up the ranks of guardian angels out there, much to my relief!  I spoke to the pharmacist again this afternoon and he told me that they would go ahead and refill the prescription without a formal renewal from my doctor, this one time.  He's doing this because I've got a long history with the drug in his database and I think he knows who I am, though we only spoke on the phone.  This was CVS pharmacy, which suprises me greatly that they would be willing to do this, suprises and relieves me.

Of course, until I have it in my hand, it's a crap shoot as to whether or not they're going to follow through but I suspect that they will.

Many thanks to you and anyone else who sent good karma in my direction, this has been a relief.  I've had to push back at least 2 pulses a week beyond when they should have happened due to prescriptions not being refilled. 

I don't know what I can do about this, I refilled the prescription Tuesday morning.  It's quite, quite, quite...did I say quite? FRUSTRATING to deal with this problem on a semi-monthly basis.  I'm probably going to buy metronidazolei online so that I have a 1 month cushion in case the prescription does not get refilled on time. 

With other antibioticsi, it's not a big deal since they're continuous AND my doc has increased the length of the prescription to 6 months for each of them.  I can miss picking one up and get it refilled the next morning, merely hours after when I might have had I done so on time.

I'll have to send my doc an email about increasing the length of the prescription beyond 1 month.  I don't forsee that as a problem, he seems like a very reasonable man and I believe he understands that I'm not about to harm myself if I need to stop antibiotics, If I need to give myself a break, I will.

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazole) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

John, inefficient

John, inefficient pharmacists is not one of my regular spells, so I wash my hands of that one. I hope you have a guardian angel watching over you now and get the metroi soon.

Lynda, we all do the best we can in the circumstances of our life and the trouble we have with the medication. I would continue doing what you are doing. It is better I think to sacrifice a bit of the efficiency of the drugs for the sake of being able to take them at all....

Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Lynda            

Lynda            

My reasons for timing my schedule the way I do is to fit my lifestyle and what I believe is the best approach for me.  I've never been given any concrete guidance on when to schedule things and have pieced it together from what I've learned about antibioticsi here and from the drug literature (thanks Rica!).

The only one of the antibiotics that I know for sure should not be taken with food is Rifampin.  The literature states that you should take it 1 hour before a meal or 2 or more hours after a meal.

I believe that while you might be able to take an antibiotic with a meal, you may be sacrificing some of it's efficacy by doing so.  The food itself contains bacteria and will absorb a portion of the drug so that it passes through your system without being absorbed by you.  As an admitted perfectionist, I try to minimize that for myself.  Plus, I've rarely had any significant negative reaction to taking antibiotics on an empty stomach, though have had a number of occasions where it nauseated me.  I try to wash it down with plenty of water and that seems to help.

I think others here will have more to say about whether you should or shouldn't take antibiotics with food and will defer that to them.

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Lynda. I have taken all my

Lynda. I have taken all my abxi together for several years (carefully separated from cal/mag). They have worked well.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 44 pulses NC USA

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

I have a question about

I have a question about John's meds schedule.  Is there a specific reason for separating the Flagyli from the other meds and food?  I get very sick feeling if I take any of the abxi without food in my stomach.  I also have been taking the Flagyl when on a pulse with the other abxi- Doxyi and Azith right after I eat.  Is this not the way to take the Flagyl.  I take my thyroid and probiotic at about 6 AM and make sure I don't eat breakfast until at least an hour after and then I take the rest of my meds, Doxy and Azith and supplementsi.  More meds and supplementsi after lunch about 1:00 PM, Doxy and more supplements after dinner, about 6:30 and then more supplements and meds at bedtime.  My supplement schedule was prescribed by my nutrtionist.  I take the magnesium and calcium at lunch and bedtime when I don't take any abx.  My last Flagyl pulse consisted of taking 1 Flagyl after breakfast for 2 days.  That was all I could handle.  When I say meds I am referring to other meds that I take that are not abx such as DDAVP and Klonopin,ect.  I do take digestive enzymes  in the middle of each meal along with Betain if I eat animal protein.  Is there any problem with taking that and then taking the abx right after the meal.  I try to avoid interactions, and am already taking pills 6 x a day to do that.  I will post a new blog on my experiences of my last pulse but I wanted to make sure I am taking my abx correctly.

 Lynda....CFSi/ME, Fibromyalgiai, IBSi, Hypothyroid, Lyme, CPNi, Diabetus Insipidus(DI).  Started Stratton Protocol 8-06; Daily amounts: NAC 2250mg, Doxy 200mg, Flagyl pulses 1500mg for 5 days, Azith 250 mg MWF,LDNi,Armour Thyroid, Klonopin, DDAVP,supplements.

Lynda- ME/CFSi, Fibro, IBSi, Hypothyroid, Lyme, Cpni, Diabetus Insipidus(DI).  Stratton Protocol 8-06; Daily: NACi 2250mg, Doxyi 200mg, Flagyli pulses   1500mg- 5days-every 3 weeks,

This witch says it should

This witch says it should be alreadyFrown.......Sarah
  
An Itinerary in Light and Shadow  
Finished Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still slowly improving with no exacerbation since starting. EDSSi was 7, now 2, hopefully will soon be less.
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.

Sarah, Michele  

Sarah, Michele    

Actually, I don't know if it has or hasn't.  Is it a really obvious orange or a subtle orange tinge?  It's hard to distinguish the shade of my bodily fluids with my eyes closed. Wink lol

Seriously though, I really don't know for sure, I was wondering myself and can't really tell a difference.  Maybe it has?  I don't know. 

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

I expect his urine will turn

I expect his urine will turn orange...

Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyli at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

I'll be watching with

I'll be watching with interest to see what happens with your pulse, hopefully no nasty spells of plagues of warts and nauseous frogs in the belly.

Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyli at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Michele        I

Michele       

I don't mean to disappoint but you may have to wait another week in order for me to start the pulse.  I'm contending today with my pharmacy who failed to fax the prescription refill over to my doctor's office on Tuesday, so when I went and picked up the refills that I had renewed, metronidazolei was missing from the list.  I know I called it in, I remember dialing in the refill number.

So, I'm now thinking I should start a monthly countdown to see what sort of complete f*-up either my pharmacy or doctor's office does this month with my refills.  It seems like it has happed every month for the last 18, but I know that in reality it probably has only been 7 or 8 times.  Still, trust me when I say I'm completely tired of dealing with it.  I almost lost it with the pharmacist yesterday when I found out.

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazole) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

But we will worry if he

But we will worry if he starts to see Hippogriffs.

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

 John- From your experience

 John- From your experience so far with Rifampin, I'm betting that you won't get hammered. You seem to have really cleared a lot to have such mild reactions.

On your schedule- the only thing that occured to me is that Rifampin should be taken on empty stomach, whereas I have to take doxyi with food to tolerate it. So I don't know how you are doing this. Otherwise you look like an old hand at this, and you are! 

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 300mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tinii daily (Taking a break from continuous protocol)

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Hi Jim I guess I"m an old

Hi Jim

I guess I"m an old pro after 15 pulses or bordering on it anyway.  I'm worried about you, Rica, and Sarah showing up at my door in hooded capes and carrying torches.  There isn't some initiation ritual I should be preparing for, is there??? Wink

With respect to food and how I fit it into the schedule I posted above.  I eat at 6:15, 11:30-12:30, and 10:30 or thereabouts.  It's about the best I can do given everything I have to take.  I don't know how anyone works it out but I guess we all find what fits our schedule and make it work.

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

John, If they show up at

John, If they show up at your door before mine, I'm going to pout. I'm coming up on two years and no sign of hoods or capes yet. (Although I did just get my hood and cape fix, reading the final Harry Potter book in a two-day marathon.)

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

I can certainly understand

I can certainly understand being nervous about the unknown.  If we don't have a reaction, that could be a sign of good things for you.  On the other hand, if you haven't improved as much as you would like then a reaction is desired. Undecided

You gooo John, if you need anything, reach out.  I would imagine you have the porphyriai C, charcoal etc handy!! just in case you get knocked on your butt.

Keep us posted,

Blessings

Ruth

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 250 mg M/W/Fday, 8-21-07 1st pulse 1 X 250 mg Metroi<

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

You'll be fine, Bunky, and

You'll be fine, Bunky, and if you're not, we'll talk you down from the ledge. Wink

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

Thanks Ruth    

Thanks Ruth    

Actually, I don't do massive amounts of C.  I take about 1500 mg of mineral C daily and that's it.  There was an article here which I've never been able to track down that described a study that found C reduced the efficacy of metronidazolei, so I don't overdo it on C, despite porphyriai

I counter porphyria with glucose, which seems to be much more effective for me when I remember to use it.  Usually, I just wash it all away over the course of a couple hours with water.  About a half liter usually takes care of it for me.

As for charcoal, when I first started the CAPi, I tried charcoal for about 2 weeks.  I had a couple of instances where it really helped and several where it made no difference at all.  It's a hit or miss thing where you just have to figured out the timing and get it all right with charcoal.  As wish C, I've chosen to go down the glucose route to combating porphyria so while I have several jars of charcoal tablets, they are just collecting dust for now.

What I may do is extend my gym week to add an extra day on Saturday.  I think the activity and quite frankly the sweating I undergo when active helps to ameliorate the toxin load in my system.  With this being the first Rifampin enhanced pulse for me, it might behoove me to go ahead and get the blood flowing on a day I would otherwise be a vegetable.

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazole) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

John - Very excited for

John - Very excited for you.  I mean this in the nicest way but - Don't know whether to wish that you get hammered and get side effects so you know it did something hopefully useful or that you sail through with ease.  Either way - I am routing that you have the best possible outcome!  By the way - my husband just got a script for Rifampin and we are planning his entry into this new field as well sometime in the future.

Daisy-Caregiver- Balo's Concentric Sclerosis. Began CAPi 5/10/07. Doxyi 200 mg, Minoi 100 BIDi 9/1/07, AZI 250mg MWF, NACi 600 to 1200 mg, Flagyl Pulses, Novantrone, Prednisone and daily pound of supplementsi.

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012. 

Hi Daisy      Yeah,

Hi Daisy     

Yeah, that is definitely a quandry, whether or not to hope to be smacked down or to not even notice a thing.  So far, I've only really be smacked down hard 1 time and that was at the very very beginning.

On my very first empirical trial I used NACi.  This was before I found a doctor or started the CAPi.  I took 1200 mg NAC for 3 days and lost my ability to walk without holding onto the walls, coudn't see clearly/straight, and lost my appeptite for four days.  It all came back over those 4 days as I immediately stopped NAC out of sheer terror and panic.  Of course, knowing ahead of time what could happen probably would have helped to prepare me but I found nothing of the sort stated here or anywhere else, and I did it alone.

I don't expect that whatever reaction I have, if any, will be anywhere near my very first one.  I've been on abx for 18 months and am on 2400 mg NAC daily with no problems.  I've been at 2400 mg for maybe 8 or 9 months now.

I wish you and your husband the best with Rifampin.  Just take it easy.  He's only just getting started and likely to have more of a reaction then someone like me who has been on the CAP for longer.

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day