Reflection, taking stock

I've been contemplating writing something and/or posting some questions in the forums here, but each time I find a reason to distract myself away from that effort.  This time I've decided to forget about posting in the forums and to just type something up, something to summarize the thoughts and ideas I've been having and the questions on my mind.

Where to begin?  Well, begin with the thing that ways heaviest on my mind.  I'm in a deep, dark hole, one only partially caused by antibiotics, but also life throws it's little hand in there too.  I'm struggling with things but not about to give up...yet.  Before I ever do such a thing, I have to try something else on my mind, which leads me to my first question, never before posed (by me).

Who has proven the efficacy of the Wheldon protocol, the protocol I've been following for 16 months and 14 pulses?  I know of two people who did...Sarah and Rica, but are they just 2 successes out of 100 attempts?  One thing that jumps out at me about them is that at various times other, alternative antibiotics have been used besides those I've been using.  So the question is, should I try that too?  It's something to do before giving up I suppose.

Another question on my mind is whether or not the fact that I'm so physical and go to the gym so much has worked against me?  When body building, you generally want to avoid cardio because of the weight loss characteristics of it.  Body building involves wieght gain.  Same sort of thing might be happening with apoptosisi.  In order to allow the cells to die, maybe pushing them harder isn't the optimal approach.  Maybe I've been sabotaging myself.  But how do I know, I can't stop as I'll definitely pay the consequences if I do from an athletic standpoint.

Should I be taking one of the CRABS medications?  I was prescribed Betaseron 7 years ago and never once took it.  A friend takes Copaxone and seems to do fairly well while on it.  Of course, I have absolutely no desire to go down that path if I can at all avoid it.

There's been recent discussion about using a p-glycoprotein inhibtor, so I've been reading up on what pg is.  I wonder whether or not my previous use of certain BBBi strengthening agents is slowing down/preventing the abxi from entering my CNSi.

So many questions but are there any answers?  Probably not and that's just the nature of being a pioneer, striking out into the unknown.

Comments

John,I believe I am a

John,

I believe I am a success, too.Although my total neurological improvement happened while I was taking high dose statins, my memory and ability to think came back with the use of the antibiotics.
 I stopped Lipitor in 2005 and since that time I only used Lipitor as a rescue drug for two weeks last year (unecessarily). Like yourself I wonder why CAPi helps some people more than others, but there are too many of us who have improved to think it is just a coincidence.
 Barbara 
Multiple sclerosis, on Wheldon protocol since February 2004, EDSSi 0 for over 4 years.

Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008. Use only LDNi.

this is an unproven

this is an unproven protocol. Plain an simple. The handbook and the MSi pages there are pretty clear that we are talking about a model. Saying that this is a model means that there is no peer reviewed data on numbers of patients who have done it to show you what might happen, but there is a good hypothesis guiding the idea. The limitations page addresses this as well. I would not encourage anyone to do this instead of an accepted therapy. If someone does it in addition to one I see that as a smart move--covering the bets. I take copaxone. Beta interferon is additionally anti chlamydial. I plan to do continuous treatment and also to use some of the other antibioticsi as well. I am not getting worse so I feel OK about my experiment, but I very clear that it is an experiment. I am doing fine at 2 years. marie On CAPi since Sept '05 for MS, RA, Asthmai, sciatica. EDSSi at start 5.5. Currently on: Doxyi 200, Azith 3x week, Tinii cont. since April '07, all supplementsi. "Color out side the lines!"

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Well, as there is no

Well, as there is no accepted therapy for ppmsi, I say thank God for cpnhelp. But I like the belt and suspenders idea.

PPMS-misdiagnosed 5 years-diagnosed last spring. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuro. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. Rockville,Md.

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

(No subject)



PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

farandwide, Having msi that

farandwide, Having msi that seems to be worsening at this point, I feel as you do about treatment options. I am significantly worse than I was one year ago and frankly have become scared and depressed as a result. Initially, I had overcome my need for Baclofen, but have needed it nearly every day for a couple months now. The most well-known common denominator for Sarah and Rica is Rifampin. I have wondered out loud about this on more than one occasion. Might Rifampin make the difference for those of us with below target outcomes? Wish I knew. It is becoming more difficult for me to stay positive. I really only have mediocre support from my family on the capi. Sarah and Rica both have supportive "Capper" spouses to boot, with physicians in the immediate family. Maybe those things make a measurable difference. Right now, it's all I can do to pray very hard, and to keep Emily Dickinson's directive to "Dwell in possibility". -kk2

 

On Wheldon regime [Doxyi, Azith, and Flagyli]  for rrmsi since October '05.  EDSSi was 6.5, now 5.5.  United States.

Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qdi for Babesia.

KK2, I'll be trying

KK2, I'll be trying rifampicin, too, before I go to intermittent therapy. I'm reminded of a particular 'name' drug that everyone said would be identical in generic form. Yet, whenever I took the generic, I got splitting headaches, which did not happen with the 'identical' name brand version. For whatever reasons, we may have different reactions to different meds and it's worth keeping your options open to try something else (which has already been proven beneficial for our purposes), no matter how insignificant a change it might seem.

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

For data already

For data already on-site:

http://www.cpnhelp.org/Stratton-MitchellCaseReports<

http://www.cpnhelp.org/clinical_outcomes_a_small<
 

David's case reports are about a year old, and he probably will update this in the future. 

What I'm most sheepish about is that we have yet to analyze the last survey data: too much going on for those of us responsible and no time or brain power left. These were encouraging when I looked at them a while back, but are already months old. 

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tinii daily (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

Thanks Jim, I appreciate

Thanks Jim, I appreciate that and I'm glad you've got the information listed here. 

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006

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 have primary progressive

I have primary progressive msi. I have done only 2 pulses so far, resulting in 6 weeks of illness. but now that the illness has passed, i feel better than I have in over a year. I no longer need stimulants to stay awake and my leg muscles are being signaled so that I walk better and need a cane less. My posture is also better as is the strength in my arms. Essentially, I can say "wow!"

PPMSi-misdiagnosed 5 years-diagnosed last spring. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuro. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. Rockville,Md.

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

Is this a question addressed

Is this a question addressed only to MS patients?   If it is then my success with the CAPi won't count for you.   However, the fact that Ella's health has improved since the lowest of the lows in March 2006 can no longer be put down to remission as her state of health appears to be following a different pattern now that things have stabilised.   No longer does she suffer the subtle eye problems that were constantly with  her in previous couple of years and although she is not walking any better, there is a new confidence that there will not be any more relapses.  

A number of people recently seem to be questioning their protocol, is it maybe that their expectations have not been met.   How can we predict when things are going to get better for each of us, and what do we mean by better.    Fourteen pulses of metronidazolei (my poison) or tinidazole (Ella's poison) is not a great number, especially for those of us who have a long standing infection.   My experience suggests that the symptoms that have been with me the shortest time are the ones that get better first, but those come and go even after 21 pulses... But the trend is towards improvement and that is what keeps me going.

We are pioneers and maybe in 5 years time there will be more than 50 people who are better because they followed this treatment.   I can wait that long... 

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.

Michele       While I

Michele      

While I applaud the success of those with other conditions to the CAPi, my primary interest is in the success of those with a similar malady to my own.  I'm glad to hear that it has helped you and Ella, and hope that it continues in that fashion in the future.

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006

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

Count me as a success

Count me as a success story. All cascading symptoms came to a screeching halt within ten days of starting abxi. No relapses in 21 months. An overall vast improvement in what I had always thought was chronic fatigue, and was not treating for nor had any expectation of improvement for it. Not doing any weight training, or bodybuilding, though, so I can't answer to that. As for abxi crossing the blood brain barrier (bbbi, kids), I think the meds that cross it, cross it, and no amount of building it up with Vitamin Di will stop them from passing through it.

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        

Hi Mac        

Vitamin Di has nothing to do with strengthening the BBBi, as far as I know.  In general, it improves immunei response to infection in the body through creation of cathedrins (which I may be remembering incorrectly but it's something like that).  Rather, the substances that it was my understanding would strengthen the BBB are/were certain types of antioxidantsi.  In my case I was using rutin, pcynogenol, grape see extract, and bilberry extract.  There are chemical terms for the latter two extracts' antioxidant components but I don't have it at the moment. 

I was taking the latter two antioxidants up through about Christmas, when I discontinued the use of both.  There is also a possibility of reduction of the efficacy of flagyl do to the counteractive action of antioxidants against it's properties as an oxidant.

all my best

John

RRMSi/EDSSi was 4.5, now 4.??? on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006

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've never been a fan

John, I've never been a fan of pills, and rarely took an aspirin before this whole MSi adventure. So, when I started Wheldon's protocol, I followed it religiously. I was always intrigued by everyone else's forays into naturalistic and prescribed additions/alternatives, but all of you seem to know so much more than I do about them, I was simply too apprehensive to toy with the formula. I think it's a fine line to juggle oxidants vs. antioxidantsi, steroids vs. none, and I don't have the expertise to do it. I am totally relying on David Wheldoni's recommendations and I am doing very well without tweaking the routine. I'm interested to know why you quit the bilberry, etc, and if you don't think that might have had an effect on your current well-being. If something doesn't feel right to me, I examine anything and everything that might have had an impact (i.e. Did I drink a diet soda without knowing it, did I eat something exotic recently, did I take an Aleve for an injury???). Have you tried reintroducing any of those four things and see if there's any difference? (I'm just curious and if it's too nosey, just tell me.) :-)

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, Regarding vitamin Di,

John, Regarding vitamin Di, I am now backtracking furiously to determine where I got that idea (and I think it was here, on this site, a very long time ago). But, in the course of researching it, I am finding so much positive info on Vitamin D preventing cancers that I'm pleased, nonetheless. Of course, I giggle every time I read the 'upper limits' and 'it's not safe' guidelines for D. Maybe they're appropriate when you're not D-depleted, but they are so low as to sound odd for our purposes here.

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