Chronicles of a Rifampinaut vol. 4: post pulse 21 and still going...

It's been a long time since I've been around on the site but decided today to write something, so that I could record where things are and have it to refer to in the future.  I'm sad to say that I'm no better off now then I was 4 months ago, at least as far as I can tell.  There are brief periods where I feel really good but that's nothing new, I've had that since before starting the CAPi almost 2 years ago. 

However, I do have to recognize that I'm still relatively early in the use of Rifampin, having started it in late August.  I'm on the end o my 7th month of using it.   Well, maybe early isn't the right term but I don't have a darth of experience with it although that's in process.

I do still have reactions to things, particularly today.  I just started taking, today, Annato based tocotrienols.  I took 100mg of it with my morning drugs.  Definitely has had a noticable reaction, I feel worse than I usual feel after lunch, which is bad enough; however, today I feel especially bad.  How do I mean bad?  Basically my balance and walking are seriously impacted, both are difficult enough but on days like today, it can be particularly grueling to walk and maintain balance for any distance.  I've taken to maintaining contact with the wall as I walk, as a point of reference and way to steady  myself.

I know something to be true every time I really think about things.  When I first found out about the CAP, I did an empirical trial with NACi and was basically incapicitated for about four days.  I just couldn't go to work and slept a lot the first two of those days.  I had even worse problems walking and being balanced then, then I do today, much worse.  So when I asking myself is this working, and that's something I ask myself a lot, I always remember that week.  NAC doesn't even phase me today in 2400mg quantities each day.  But then I ask myself again...is this worth the effort when I've next to no discernable benefit from it so far and it has been almost two years???  I have to tell myself to keep going, don't worry about it, don't give up, there's no better option.  So I go on.

I do want to mention, before I forget, that I did try  NT Factor for two months, 3 times a day.  I noticed nothing from taking it, so on the third month I didn't decide to continue with it, given the very high cost involved.  I instead decided to try other things, which I'm doing now.  What things?  Glad you asked...

As mentioned, I just started on Annato tocotrienols today.  I also started on D-Ribose earlier in the week, and 120mg of CoQ10 at the same time.  I think the D-Ribose has helped a bit, although it's not consistent, it just depends on when I take it.  It's really too soon to decide anything conclusively about either of these things.  I do know the Annato tocotrienols have made a difference today and I'll know more tomorrow after taking my next dose and whether it's definitely evoking the worsening of symptoms.  Worsening is a good thing in this situation, albeit not pleasant in the least bit.

In any case, I just wanted to check in.  I'm still around, still trying, still keeping on.  I've been considering whether to start on INHi as it's been sufficiently long enough on Rifampin that adding INH would be distinguishable from the Rifampin.  However, since I just started the tocotrienols, I think I'll smack myself down with adding one thing at a time and give it time before adding another.

 

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

Comments

Thanks for reporting John, I

Thanks for reporting John,

I suppose if one can attribute improvement to exercise, one can also attribute it to CAPi.  I am very encouraged you have not slid completely backward the way my cousin did when she was first "hit" with MSi; she went from vivacious to invalid, no walking, talking or anything whatsoever!.  This simply, to make a point, that MS is a horribly unpredictable disease & you are still reporting!

Continued Blessings in your journey.

 

IllnessCFIDS/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 2-6-08 6th pulse 1 X 375 mg 5day

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<

John, it is good to hear

John, it is good to hear from you. We are gathering information here as you know, since you have contributed so well. We each have our lists of symptoms and hopes. I have to look at my own record of Rifampin: I am PPMSi, dived in from day 1 with Rifampin 2x day, always 2 hours after eating and at least 1 hour before, with Doxyi at the same time. It was grueling but that is what saved me, I'm sure. I did about 16 flagyli pulses during that time. It was not until 10 months later - July 05 - that I wrote on the calendar "Rica getting better?" so I haven't given up hope that you will respond. At approximately a year I added Azithromycin and did all three till January 06, when I stopped Rifampin.

 

Rica PPMS EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 49 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

 Mac- I agree that a

 Mac- I agree that a plateau and non-progression for two years in a progressive disease is a good sign, but I also have to agree with John that it's not confirmation that the CAPi is what's doing it, especially when the starting point was early and you don't know what the periodicity would be in RRMSi. Five years without any disease progression would be a clearer confirmation, as most people get some relapse within this period "normally." Ten years would be even more confirming!

John- I think this is the crux of starting a CAP at the early diagnosis: it will be a long time before you can feel confident that it is the regimen that created the plateau or whether it was just part of the shape of the disease. It would be meaningful, to me at any rate, to look at the curve of function loss prior to the CAP, as even in periodic disease there is an overall slope.  

I'm personally very glad you are reporting your uncertainty and questions, as there is likely a range of responses among the MS users, and we simply don't know enough to have a clear picture of that range without honest reports. We can be rightfully enthusiastic about this treatment knowing that it will help many people with these diseasesi, but we can't say that it will help a specific person, or to what degree it will help them, with any reasonable certainty.

On the other hand... I was looking through your early blogs and found this below. How about an update on the specifics: Worse, no improvement, slight improvement, significant improvement?

As mentioned in the past, I'm a RRMS patient having been diagnosed about  4 - 5 years ago.  Here in brief is a list of my symptoms.

  1. loss of sensitivity to touch
  2. loss of fine dexterity and motor control
  3. poor balance
  4. fatigue and inability to stand or walk for extend periods of time
  5. bad gait (walking)
  6. prostatei problems
  7. occasional poor vision/double vision
  8. sensitivity to heat or cold (35 - 80 degrees F is okay)
  9. exacerbation of symptoms after eating

 

CAP for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, INHi 150mg, Magnascent Iodine 20 drps/day, 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              

It's very good that you've found this and brought it back to my attention.  Very good and very much appreciated.  It reminds me of things I've thought little of and whether or not there have been any changes, and if so what are they.  There have been changes and it's easy to forget when they're not right in front of me and this brings it right back to that place where I can reflect on it and evaluate, and remember things I haven't thought about.  So again, thank you, I appreciate the wake up call.

That being said, let me take the list and go through it, one by one..

1.  loss of sensitivity to touch

I'm unsure as to whether there has been any change with this.  I can't tell if I've just aclimated to the way I am or have regained anything.  I'm inclined to think that maybe I've regained some sense of touch but at the same time, have I?  My fingers, for instance, still have a stiffness that they didn't have before I was diagnosed...a stiffness that's not really "stiff" per se, but just a lack of sensation that translates into stiffness.  I an certainly tell when i wiggle my fingers, they just aren't what they were so long ago and haven't been.  Still, I can feel my breath on my hands when I check and at one time I don't think I did.

2.  loss of fine dexterity and motor control

No dexterity has returned.  I was tripping less for a bit but I attribute that to excercise and doing the right ones.  I haven't done those in a while and have managed to trip a few times, resulting in some bad spills.  Fine motor control in my hands hasn't improved although it isn't anywhere as bad as it was seven years ago when first diagnosed.  But it's been much better then that for some time.

3.  poor balance

I addressed this above.  My balance is very bad but I'm able to get around most of the time.  I get around better when working out regularly, particularly when using the elliptical trainer on a regular basis.  But, I've been not using it since November, in part to see where things are when not using the excercise equipment.  They're really not much better.  I find I can get around okay but have taken to maintaining contact with a wall most of the time, in order to just stabilize myself as I walk along. 

4.  fatigue and inability to stand or walk for extend periods of time

Definitely not better in this category.  I stand and walk for shorter periods now then before, mostly I would say because I haven't been going to the gym.  Essentially, the gym is a crutch.  In reality, it's just a sign that things aren't getting better. 

5.  bad gait (walking)

Several of these items are related.  As already mentioned, I can't walk as far as I can when I go to the gym on a regular basis and have taken to maintaining contact with the wall when I can, to stabilize myself and as a point of reference.  It's clear that my gait is unsteady and labored.

6.  prostatei<i< problems

This is one of the areas of subtle improvement.  I've gotten to the point over the last two years where this has become less and less of a problem, in part because I've learned how to manage it, and in part because I'm physically able to do something about it when I need to. 

You may recall that I was getting nose bleeds.  I still do and I've determimned that it's tied to the effort with this.

7.  occasional poor vision/double vision

This still occurs, more so after eating.  It hasn't gotten better and if anything has gotten a bit worse.

8.  sensitivity to heat or cold (35 - 80 degrees F is okay)

The cold this winter really didn't affect me noticeably.  It was cold but I got around okay in it, I didn't feel slower or more lethargic.  It will be interesting to see how things go over the summer and whether the heat will affect me as it has in the past.

9.  exacerbation of symptoms after eating

Oh yes, this definitely still happens.  I don't know why nor how to prevent it.  Glucose sometimes makes a difference, or has in the past.  I don't know that it's porphyriai or something else.

That's it for now.  If anything else comes to mind, I'll post it.  Thanks. 

 

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

Hi all          

Hi all          

With all due respect, I don't know that I've halted anything.  I still have up days and down days, nothing different from before.  Does that constitute a cessation of disease progression?  I have serious doubts about that. 

I see no telling evidence that I've halted anything.  My condition hasn't been aggressive since I was initially diagnosed seven years ago, it's been gradual up to the point where it plateaued at where it currently is.  Now, there has been very very subtle improvements in some of the symptoms but those have by and larged stopped occurring.

Don't get me wrong, I really really want to cry out "hooray, look what I've done!!!" and tell the world about it but I have to be frank about it and ask myself "what would I tell anyone?"  At this point, I don't feel like I have anything substantial to report.

All that being said, this is the only chance I have that has any possibility of making me well again, so I press onward.  I try new things and sometimes they help, other times they don't.  I'm just a walking empirical experiment in treatment, just trying to find my way.  I'm still holding on...

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

Is a plateau not the

Is a plateau not the definition of non-progression? I sure know it's the definition every woman uses when on a diet and no weight is being lost, despite continuing the diet. Wink

John, a plateau is not a bad thing.  It's a nice equilibrium point and, hopefully, the teeter-totter will tip your way soon.

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

 Hi John, I am just 2.5

 Hi John,

I am just 2.5 months into treating with the abxi protocol.  I have had MSi for 37 years and am a 4.5 EDSSi.I did notice some malaise and brain fog at the beginning when I upped  the NACi to 2000 mg /day, but outside of that Ihave have no dicernable die off so far.  It must be discouraging to be 2 years into this and not see measurable improvement. But I have to agree that non-progression is a positive marker.  I appreciate your reporting your experience.

Tina

Tina-MS 37 years;EDSS 4.5

1/1/08 Wheldon CAPi; Azith 250mg 3 x a week; Doxyi 100mg, NAC 2000 mg daily

 Tina-MSi 37 years;EDSSi 4.5   1/1/08 Wheldon CAPi; Azith 250mg 3 x a week; Doxyi 200mg daily, NACi 2000 mg daily, started Flagyli pulse 4/14/08.

 

Zero progression on common

Zero progression on common antibioticsi. Who'd have thought it? (Instead of fifteen hundred dollar a month unknown chemicals with no guarantees, either.)

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

  "Cholesteroli rafts:"  I

 

"Cholesteroli rafts:"  I can just see them!  John, if your body had no cholesterol it would fall apart, so don't worry about what you had for lunch.  Do be thankful though, that you appear to have halted your MSi, which involves myelini rebuild, which involves cholesterol. 

I was wondering about you just yesterday, hoping you were OK, and lo and behold, you popped up.  ...........Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.

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.

 John- I don't think it

 John- I don't think it works that way. Your body manufactures cholesteroli and needs it for stuff like myelini! It's what happens at the cell that's critical re: Cpni. Enjoy your eggs and let the toco do it's stuff at the cell interface!

CAPi for Cpn 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, INHi 150mg, Magnascent Iodine 20 drps/day, 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

John- I'll be interested to

John- I'll be interested to hear your Toco experience. I had an initial noticeable reaction, then it subsided as I continue at 200mg a day. I've been reading up more on how Toco's work, and it suggests that their impact on inhibiting intracellulari Cpni is a more gradual process. Here's what I understand so far.

The main effect the delta and gamma tocotrienols have is on limiting the availability of cholesteroli to the Cpn. Cpn EBi's need cholesterol, which they take from the bloodstream but mainly from the host cell-wall, in order to enter the host cell (via "cholesterol rafts" which is a great image). They also need it to make the inclusion, or pocket within the cell, that allows the Cpn to protect itself from the intracellular immunei functions. So the first and main effect of toco is to reduce the number of Cpn inclusions into new cells.

But the inclusions require cholesterol to be maintained, and to expand as the inclusion fills with EB's. Inside the host cell, it can't make it itself and can only get cholesterol from the host cell membrane itself (according to Azenabor), so must steal it as it does ATP. The toco's interfere with this process also, so by limiting this the intracellular reproduction process is gradually interfered with. But this latter sounds to me like a more gradual process, and may be dosage dependant. The upside of this may be that the gradual interference might limit the die-off reactions as it doesn't appear to stimulate conversion to cryptic formi, or stimulation of the inflammatory endotoxinsi that cause so many reaction problems. 

All this is somewhat theoretical in terms of the specific reason for inhibition, but the lab results do indeed show gradual inhibition of Cpn in the host cell and eventual disappearance of detectable Cpn in whole blood samples.

Anyway, thought this might be of interest. 

CAPi for Cpn 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, INH 150mg, Magnascent Iodine 20 drps/day, 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

Hi Jim          

Hi Jim          

I'll definitely report back on my experiences with it.  I wish I had read your post before ordering lunch!  I ordered Egg Drop soup which is really heavy with cholesteroli and I'm not wanting to give the buggers a helping hand.  In addition, I just took my second dose of tocotrienols a little bit ago and don't want to waste them due to the cholesterol from the soup.  Live and learn I guess.. 

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, Just curious - were

John, Just curious - were you not taking CoQ10 before? I say this because I just realized (while reading your post) that I haven't taken mine for a couple of weeks. I must have run out and forgotten to pick up supplies. I've also felt generally blah for those two weeks. I know there's a correlation because upping my CoQ10 whenever I felt punky when I first started the protocol made me feel SO much better. (I was taking them like candy the first few weeks.) Thanks for the reminder, even if it was inadvertent! (Rifampicin is next on my horizon, too.)

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

Hi Mac         No,

Hi Mac        

No, I wasn't taking it before.  I have taken it in the past with no discernable reaction; however, I'm now taking over 3 times the dosage I was taking at that time.  One of the reasons, probably the primary reason I wasn't taking it before was the cost of the supplement.  Boy these things aren't cheap!  However, I found a cheaper source and decided to try it, especially because I'm pairing it with the Ribose at the same time.  I'm hoping the combination will yield good results and so far, it does seem to help. 

I do feel better when taking one or both.  Since I started them at the same time, I'm not sure if it's one or the other that's helping, or the combination.  Regardless of which is he one doing the most to help, the combination seems to be working so I'm not stopping the two.

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 - Hi!  Good to hear

John - Hi!  Good to hear from you.  Actually was thinking of you this week and wondering how you were doing with the Rifampin. 

Sorry to hear that you are the same after two years.  No progression is good but I know you were hoping for some improvement too.

At this point it would probably be good to give the INHi a try and/or increase the dose of your other antibioticsi.  Of course you should probably give the toco's a try first to see how things play out before you try anything else. 

Rooting for you!

Daisy  - Husband on CAPi 5/07.  Minoi, Roxy, Diflucan round two 1-31, Rifampin, Bactrim DS,  Prednisone, Novantrone, Doxyi<, Azith

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 John,  Thanks for

Hi John,  Thanks for reporting in.  If you are no worse off than you were before starting the CAPi, that's progress (as in lack of disease progression).  Have you considered doing longer flagyli pulses? 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAP since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.