post pulse 23

Okay, I finished my 23rd pulse on Friday and then just did the regular daily medications over the weekend.  Perhaps I should say regular weekend medications as my last dose of azithromycin was Friday.  In any case, I thought I would recap some things I noticed during the pulse and things I've noticed over the weekend.

What I've noticed is not any improvements in my symptoms...unless you consider having more pain and discomfort an improvement.  Pain...that's a relative term.  It's more like inflamation and soreness then pain per se.  Hard to describe how it feels but I think many of you know what I'm referring to - a hotness in one's extremities (my legs mostly). 

 I used to get this feeling after taking flagyl while on a pulse but this time I didn't notice it as much.  But sitting here writing this blog 2 days post pulse, I'm having it.  I took my last meds about 2 hours ago - second dose of Rifampin and a dose of NACi.  That was after taking a dose of doxyi, INHi, and NAC about 2 hours before that.  Yikes!

I have been taking doxy and INH later in the afternoon apart from Rifampin in the morning and Rifampin in the evening.  I've definitely been getting more reactions taking Rifampin by itself, apart from Doxy/INH.  I do however take it with Azithromycin M, W, and F in the morning and don't notice anything from it for the most part on those days.

I have been taking more mineral vitamin C with Calcium Pyruvate also in the morning during the week.  Over the weekend, I haven't taken any.  Not sure if it's providing any anti inflammatory benefit although it may be.

Anway, just thought I would jot down some notes of what's going on.  Hopefully, the road to recovery is making progress.  My understanding is that Dr. Stratton says it takes 3 - 5 years and I'm only at 2.  So onward I go, provided medical care isn't retracted.  I'll cross that bridge if and when I come to it.

all my best

John

RRMSi/EDSSi was 4.5, was 4.???, now 5 on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INH 300mg/daily on 03/17/2008.

Comments

Oops double post

Oops double post

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. 

John -  These comments are

John -  These comments are all just my strange musings but ...

Have been thinking about your and Marie's situation a bit.  At two years I would think you would have stopped seeing disease progression  if the antibiotic combo you were taking were the correct one for you.  Yes it still might take 5 years to eradicate all the bug but logically it just seems that at two years the active disease process leading to steady, subtle ongoing decline would have abated.

On one hand - I see that early on you had some  reactions to antibioticsi but moved through them fairly quickly.   Also - it seems that as you add agents - you notice blips along the way.    This seems to indicate that you are infected with something or you would not likely have these reactions.

Again - this is all just pondering out loud - but ---- what if --- you are close to ----but just not quiet over ----- the success threshold of antibiotic combo and dosages?

If this were the case, then by increasing dosages of antibiotics in your combo, you might finally see your disease arrested and possibly finally achieve measureable improvement? 

For example, you might take both Rifampin 150mg at the same time rather than twice daily  to increase tissue levels/drug to bug. 

Or speak with your physician and consider going to Rifampin 600mg once daily to really take a hard punch at bugs.  

Also, what if you switched macrolides - moved off azithromycin 250mg MWF and tried 1 to 2 grams of clarithromycin per day or moved to roxithromycin at 300mg bidi - higher doses - more frequently.    Or perhaps bumped azithromycin up to 500mg daily.

Move from doxyi 100mg twice daily to minocycline 100mg twice daily or even 200mg twice daily.

I guess really ramp up the dosages of the antibiotics to see if you can achieve higher brain tissue levels and overcome the efflux pumps from brute strength?

What if you have a co-infection in addition to CPNi that could require higher drug levels in the brain to overcome?

Again, my thought is - you have reactions to antibiotics - although fairly mild ones --- but don't seem to report at 2 years that you have arrested your disease process. 

Seems you might be --- to quote to the song "so close and yet so far".

All just food for thought....

I am rooting for you !

Daisy - Husband on CAPi 5/07.   Roxy, Diflucan, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxy, Azithromycin, Flagyli, Mino

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. 

 Andesine- if you sound

 Andesine- if you sound them out, see if they would offer a web discount for our members as we could be a big market source of orders! Swansons and Vitacost and iHerb seem to be both reliable house brands as well as ship overseas.

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

 

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

Yes that's what I was

Yes that's what I was thinking. I've also got details of a manufacturer who will sell unbranded so I'll speak to them too. 

Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supplementsi. Doxyi 200mg. Zithi 250mg M/W/F.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008.

Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April

John- at least you are

John- at least you are getting clear reactions to your regimen. For a while you had added the Rifampin and nada, zero, zip. Seems like you found the variable: isolating the rifampin dose. I suspect that the pain/inflam you are feeling will tend to mitigate any signs of neuroi recovery, as most folks with MS seem to report symptoms worsening when the inflam is high. I'll be interested to hear how the pyruvate goes. Have you tried additional pyruvate to counter the side effects?

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

 

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

Jim             

Jim             

I haven't tried doing the full 6 grams of  Pyruvate before abxi, I've been sticking to 3 grams; however, I have just recieved a new supply of supplementsi and I made sure I ordered ample Pyruvate so I may try upping the dose and see how I do.  I'll keep you posted if I notice anything. 

all my best

John

RRMSi/EDSSi was 4.5, was 4.???, now 5 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INHi 300mg/daily on 03/17/2008.

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

For those purchasing the

For those purchasing the abxi without the help of insurance, or supervision of a Dr it is tough to imagine 4-5 years.  I have been buying online and it is not cheap!  No Dr I have seen here in San Diego will touch  the CAPi with a 10 foot pole.  Despite offering much reference from the handbook to all I have got nothing but pure rejection from GP's, Neuroi's, and everyone else.

I guess the question of what your health is worth comes to mind, but damn MSi sucks in more than just one way.  It sucks your wallet dry too.

MS since 2001, Rebif 3 last years, Doxy 200mg, azith MWF, NACi 600mg, B12, Bcomplex, multi vit, quercetin, Vit D, Omega 3s, charcoal

MSi since 2001, Rebif 3 last years, Doxy 200mg, azith MWF, Flagyli pulse #2, NAC 600mg, B12, Bcomplex, multi vit, quercetin, Vit D, Omega 3s, charcoal, chitosan. No Dr. oversight - Going it solo

Grumpster, tell me about it.

Grumpster, tell me about it. It's the supplementsi that cost. I try to get the largest pots I can find but even then, it's alarming to see the speed they disappear. Every time I think I have enough to keep me going for the next few months, another post suddenly gets empty.

I was wondering, if we get to the stage where there are enough of us taking these things whether we could have enough buying power between us to get bulk discounts from one of the suppliers such as NSI. In fact, I might get in touch with them and sound them out. 

Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supplementsi. Doxyi 200mg. Zithi 250mg M/W/F.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008.

Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April

Grumpster       There

Grumpster      

There is no doubt that it's not a cheap path to follow without medical insurance and even with it.  I spent hundreds of dollars this month just on supplementsi.  Definitely not cheap.  I can totally empathize with you on that.

The best suggestion I can give is to see if Dr. Powell in San Francisco will talk to you or if that's not possible, ask your doctor who she/he would recommend that you talk to if  she/he won't support you. 

In addition, I believe the Michele here may be a good contact to ask about other physicians.  I believe she's keeping a list of them and where they're located, so send her a message and ask.

Make no mistake, this is the battle of our lives.  Don't throw in the towell early and forsake any possibility of it working out.

all my best

John

RRMSi/EDSSi was 4.5, was 4.???, now 5 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INHi 300mg/daily on 03/17/2008.

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

Grumpster, But isn't Dr.

Grumpster, But isn't Dr. Powell, in Sacramento, close enough for you to do an overnight trip?

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

There are a number of posts

There are a number of posts on here saying that if you stop the protocol too soon then you are storing up a lot of trouble for yourself. You have to kill the thing completely. If you don't it gets harder to kill next time you try.

Stick with the Protocol. Don't play with it and don't change it until there is a good body of evidence that those changes will work. People on here won't be able to support you if you're doing something none of them have any experience of.

Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supplementsi. Doxyi 200mg. Zithi 250mg M/W/F.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008.

Berkshire, UK. Diagnosed RRMSi Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April

Grumpster, Veressv Dr.

Grumpster, Veressv

Dr. Stratton has said that the protocol takes 3 - 5 years for someone with MSi, so it's best to be patient.  I've been highly impatient at times, so I speak from experience.  (those who've been here as long as I am are currently snickering "at times???" lol). 

There's no way to rush things so you have to learn to be patient and follow the protocol as best as you can.  This is regardless of whether you're following the Stratton or Wheldon protocol.  I believe that's also true of the Powell protocoll but I know less about it than the other two. 

For the first 21 months, I did nothing but stick to things, adding Rifampin and then INHi which are both abxi that one can use on the Stratton protocol.  Not sure if Dr. Wheldon would use them too but I suspect he would and does.

Beyond that, the other things I've tried are not recommended and I've only recently started trying them out, and that's only after sticking to the protocol for almost two years.  Follow the protocol, see how it works first before you start trying other stuff.  You may never need to try anything else.

all my best

John

RRMSi/EDSSi was 4.5, was 4.???, now 5 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INH 300mg/daily on 03/17/2008.

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

COngrats. I have been on

COngrats. I have been on another protocol before but it has been 5 years, continiously. Still having issues. So yes it can be a long way. I hope i will feel well enough soon, to post a new blog with ending up my CAPi sometime soon, but doesnt look like at the moment. (no i am pulsing too-3rd day) it isnt the best feeling but not that bad...so hopefully i will get rid of the beast sometime soon.
doxy200, azith250, NACi 2400, Metroi 1250(once a month), supplementsi, vitaminsi.

 Wow John 2 years is not

 Wow John 2 years is not long enough?  i planned on giving it a year or so and then if nothing looks beneficial then moving onto something else, like bee sting enemas.  Kidding kinda, but not really.  I admire your persistance and hope that you can get some relief from the rollercoaster from hell called MSi.  I want off the damn thing!!

 

MS since 2001, Rebif 3 last years, Doxy 200mg, azith MWF, NACi 600mg, B12, Bcomplex, multi vit, quercetin, Vit D, Omega 3s, charcoal

MSi since 2001, Rebif 3 last years, Doxy 200mg, azith MWF, Flagyli pulse #2, NAC 600mg, B12, Bcomplex, multi vit, quercetin, Vit D, Omega 3s, charcoal, chitosan. No Dr. oversight - Going it solo