my progress, on reflection...

For a couple of weeks, I've been trying to pay increasing attention to myself and how I'm responding to the Wheldon protocol. I've been trying to identify concrete ways that I have improved and am improving. The conclusion I've come to is that I am improving. I come to this conclusion timidly because I don't want to delude myself or mislead others.

So how have I been improving? Well for the most part, I've been experiencing gradual improvements. These gradual improvements accumulate over time, which is interesting and very much the opposite affect of the onset of my condition (RRMSi) which also was gradual, though much more obvious. This gradual improvement has been described by others here but there is a difference between reading it and experiencing it. I think gradual for one person means something somewhat different for the next. To continue...

The areas of improvement are physical, of course, and were difficult to conclude as improvement but I believe that is indeed what's happening. I've been going to a gym for several years following very much the same sorts of routines over time. Until the last six months, I seemed to be stuck at the same point of non-progression and even declining slowly in some ways in terms of my performance. However, I've started very clearly progressing in having more strength and energy. This has also shown in somewhat better balance and endurance (the ability to stand for longer periods without difficulty). I've even been able to sustain longer periods of bladder control than I have in years (3 or 4 hours one time that I recall), though generally seated.

I've been sleeping better, though that started fairly early, maybe 2 months into the CAPi. I recently started dreaming again, perhaps in February. It was after I began taking L-Carnitine, which I hadn't been taking beforehand.

My sense of touch is beginning to be more sensitive. My fingertips were tingling, though painfully, the other day, which is similar to something that happened early on 7 years ago with the onset of my condition. That hasn't happened again, though I would welcome it, even though it was painful. Most of the time, I still feel like I'm wearing gloves over my hands, but there are times when it is starting to feel less like that. I can feel the temperature of the skin on my hands just by closing them.

Tripping and falling has been happening much less often. I attribute this not only to an improvement due to CAP but indirectly so as an improvement to muscle development in my legs which wasn't happening before. My calves are like big rocks.  I still trip, but I don't stumble and fall, I easily recover.  I'm mentally ready to fall and it's almost a surprise that I don't, I've fallen so many many times.

The other day, I almost ran up some stairs, which I haven't done in eons.  I also almost skipped down some stairs, though just a couple of steps.  I'm still very apprehensive about going down stairs quickly, so it's much more likely I'll run up them before I go down them quickly.  But in both cases, it's almost.  I'm not going to do it unless I empirically know I can.

Ok, sitting here, I just tried one of those close your eyes, extend you arms, then one at at time touch your index finger to the tip of your nose.  I did both perfectly without hesitation or delay.  Very cool.  I don't know if that means something, but it made me smile, lol!  I don't think I could do that when I last saw a neurologist a year ago.

So, to conclude, the improvements are there.  I'm hanging tight, hoping there is a lot more coming.

On another note, I mentioned recently that I was having difficulty with getting in to see my doctor again for a six month follow up visit.  It should have been in June but have been repeatedly pushed back.  Last I checked was that the earliest possible I might be worked in would be September, but even that is now likely pushed back.

Well, I finally emailed my doctor and to my surprised he responded the next day.  I asked him about the difficulty getting in and he acknowledged that it is difficult and that he would try to get me in, though the question of when is still unanswered.

I mentioned to him that it would be sensible to check the status of my liver.  He has agreed and has ordered the tests be done.  I need to call his lab nurse and set up a time to go have blood drawn.  I'll call the nurse on Friday.

Next, I've discontinued a couple of the supplementsi I've been taking.  I've stopped taking Quercetin for now.  I'v also stopped taking a couple of antioxidantsi that I've been on prior to the CAP - grape seed extract and bilberry extract.  I decided that taking those along with ALA, vitamin E, etc., are probably working against the effectiveness of the CAP.  This may in fact be why I've noticed more over the last six months or so because that's the time frame that I discontinued the grape seed extract, which is the more potent of the two extract antioxidants I've been using.

I've been reading more on this site about the use of aspirin against Cpni and have thought of trying it.  The information I've seen isn't clear to me as to the usefullness of it, so while I'm thinking about it, I haven't yet started using it.

I probably need to start using vitamin K again.  I've been bruising a lot at the gym.  My legs look like  a topicgraphic map, lol, with various shades of purple continents and islands strewn about.

I've mentioned elsewhere that I've achieved 2400 mg of NACi daily.  I year ago I couldn't do 600 mg daily and had a major reaction when I did 1200 mg three days in a row.  Massive die off reaction but the levels are now much less apparently, which is a good thing.  Progress is good! Smile

Let me see, what else can I share in this blog entry?  Nothing else comes to mind so that's it for now. 

best regards

John

Comments

Hi, I thought I would

Hi, I thought I would follow up on the resistance to heat question.  We had temperatures here in the 80  - 90 degrees F over the weekend.  On Saturday I was fine, no problems.  The termperature was about 81 F all day, it was great.  Sunny, breezy, very nice.  I got to drive around in a convertible for an hour or two with a friend, it really was great.

On Sunday, temperatures were at about 88F.  I was a dish-rag.  This small temperature variance did it for me, I was having trouble all day.

I just thought I would add that in since it is recent evidence/information about my recovery and that's what this blog post was about.

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, all this keeps

John, all this keeps reminding me to caution you NOT to run down those stairs - I am never (well, almost never) cautious but in running DOWN the stairs you could break a bone easily and thereby have a major setback. The fall on the carpet is almost a war injury - you get the Medal of Progress. As for neurologists, I will not comment. You may know that when I improved, I was told by two not to come back, and neither was interested in my getting better or why. My "regular" family doctor now prescribes for me and the other day, even though he no longer takes new patients, took the MSi patient to whom I gave my cane in Sept, 2005. She has been seeing an MS specialist who has had her on Rifampin and flagyli for 6 months. She was not due to go back til Sept so will now be on a proper protocol.

 

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. flagyl  total 41 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

John, It so encouraging to

John, It so encouraging to read such a detailed account of your incremental points of progress. Especially for someone like me who is just starting out on the treatment and running into hurdles. Thank you for taking the time to put it down in writing.
Began CAPi Oct.06 for SPMSi. Currently on Doxyi/Roxyi. No pulses as yet.

John, you know I tend to

John, you know I tend to fall more now than I did when I was at my worst, for the simple reason that I was very careful then to avoid falling, whereas now I am somewhat reckless.
 
I do now, though, recover from falling, exercising or whatever much quicker.  A fall can make my bad leg forget all the new pathways for a minute, but in five minutes or so, it is as though I didn't fall at all.  I can raise my pulse rate on exercising to 170, but it will drop back to 60 or below in less than ten minutes.  If I'm tired, though, I can also drag my right foot.......Sarah
 
An Itinerary in Light and Shadow
Wheldon regime since August 2003, for very aggressive SPMSi.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.
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.

Hi John,Sorry to hear about

Hi John,

Sorry to hear about your fall today, but your observed improvements seem so encouraging.   I'm sure you're cautiously thrilled.   Congratulations!

On Combined Antibiotic Protocol for Cpni in Rosaceai since 01/06

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Great John! I really

Great John! I really understand well the desire to not fool yourself or anyone else about your improvement, I too have such mild slow moving improvment it is hard to quantify, good job finding those areas you really can talk about with confidence. It is wonderful once you realize it is going the way you want it to and improvments really are happening. It is fun letting the diet go a little isn't it? I did that as well.
marie
On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini 2x month, 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

Thanks Marie, I appeciate

Thanks Marie, I appeciate the feedback.  Incidentally, I tripped and fell today and short time ago.  I was in the office, and have two really interesting carpet burns on my right elbow and forearm to show for it.

Even more interesting is how I responded to the fall.  In the past, my body would go into this sort of shock--my knees would buckle and I would be much more unsteady on my feet, having to sit down for a bit before continuing.  That didn't happen today.  Instead, I jumped up, looked at my arm, and charged right on!!  There was no shocked feeling in my body from the fall.

Another thing I've noticed is that my breathing is better.  I noticed this some time ago but don't remember to mention it most of the time.

When I started the protocol, my breathing was such that in the gym, when I would get short of breath from excercising, I simply could not take a deep, full breath, or catch my breath easily.

Now, I can inhale deeply without any trouble.  Long, deep breathes, easily.

I mention that my sleep has improved and I suspect that this is part of the reason why.  It also might partially explain some of the other stuff, like quicker recovery from excercise.

One thing I don't know yet but hope to get good news on is coming this summer.  I've been very sensitive to heat, generally fairing progressively worse with heat above 80 F.  I was out in 80 F weather the other day and it felt great, no problems.  I hope this will be the case with temperatures approaching 100 F.  Only time will tell...

all my best

John

RRMSi/EDSSi 4.5 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

An addendum to my original

An addendum to my original post.  I was trying to put down everything that I've noticed improving.  There are two things that come to mind.

First, I've experienced what I've believed is secondary porphyriai in a different manner than most people here.  It may in fact not be porphyria at all, but it responds to glucose the way porphyria would/should, so who knows?

Anyway, the way in which I've experienced this is that after eating a meal, I would often feel lethargic and much more unbalanced and unable to stand and walk well.  Foot dragging would be increased, as would the likelihood of tripping, etc.

The way in which this has improved as it's lessened.  I still feel more lethargic and there is a tendency to have more foot drag (my right foot by the way), but it's not as bad as it once was.  I can almost ignore it...almost, but not always.  Sometimes,  it comes right back just as viscious as before, but often it doesn't.

The second improvement is something I've noticed at the gym.  It relates to being able to stand longer and more easily.  Simply put, I'm recovering from weight lifting and extreme exertion more easily / faster.  I suppose this is also tied to having more energy, but after my workouts, I have had much less energy generally than before I start, lol, but it's getting better.

Just thought I would add that info here so that it will be around to read again in a year, as a signpost. 

all my best

John

RRMSi/EDSSi 4.5 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, things go the right

John, things go the right direction for you. I could sense that you were better when I had read in March about your frustration about not getting dramatic improvements. Now I have a proof of it. Congratulations. Barbara. Thank you for a perfect example of how this treatment works for most of us. Multiple sclerosisi, 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.

Hi BarbaraI hope and pray

Hi Barbara

I hope and pray for the day when I can change my footer to say EDSSi 0.  I don't know where you started, but it's something I have to emulate.  Thanks for hanging around, you, Rica, Sarah, and others who have done this are my motivation! 

all my best

John

RRMSi/EDSS 4.5 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

Good news John, this seems

Good news John, this seems like an encouraging trend.   As Joyce says, with RRMSi you are always wondering if this is just the quiet before the storm, but when the quiet gets better and longer then certainty sets in.   Long may it continue.

Michele: Wheldon CAP1st May 2006 IBSi, sinusitis, alopecia">i, asthmai, peripheral neuropathy. 26th March 2007 continuous Flagyli at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMS Cap Started 16 March 2006

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

John,  Your observations

John,  Your observations and assessment are cause for celebration.  Your tone seems much more peaceful too---a good sign, the fruit of certainty.  That certainty should help to sustain you for the rest of the course.  I believe it's more difficult for someone with RRMSi to do the CAPi than someone with a progressive form.  I respect you immensely.

You've piqued my curiosity about your supplement changes.  Can you explain what you meant when you said "I've stopped taking Quercetin for now.  I'v also stopped taking a couple of antioxidantsi<i< that I've been on prior to the CAP - grape seed extract and bilberry extract.  I decided that taking those along with ALA, vitamin E, etc., are probably working against the effectiveness of the CAP."  I'm interested in all of it, but particularly the quercetin discontinuation.  Thanks,

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi) / Cpni indicated by reactions; Mpn, EBVi, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAP since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDNi.

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. 

Hi JoyceI'm not sure what

Hi Joyce

I'm not sure what it is you're wanting to know.  I have been taking most of the supplementsi continuously for about 7 years because most of them were recommended for the Best Bet Diet, which I've been following for the same period of time.  I've started to stray off of that diet here in the last 3 months, but generally still follow it closely.

The billberry and grape seed extracts were both taken due to the likelihood that they would strengthen the blood brain barrier.  This is a good thing, whether one ascribes to the theory behind the best bet diet, for those with MSi.  However, since I'm now pursuing resolution through the Wheldon protocol, I want to realign my efforts towards that primarily, rather than towards the best bet diet.

Let me know what questions I can answer for you.

all my best

John

RRMSi/EDSSi 4.5 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, spectacular,

John, spectacular, wonderful, great, hard-earned and much-deserved. Your doctor probbably won't believe you are you. And I bet your liver functions are just right - please let us know. I am so, so happy for you.

 

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 41 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

Hi Rica I've been debating

Hi Rica 

I've been debating on when or if to set up a new appointment with the neurologist I worked with last year.  I'm still working on things and I would rather not have her give me grief about it, I have seen improvement though she may not be seeing it.  However, I've also thought maybe getting another MRI done might not be a bad idea, I don't know.  If it shows improvement, what will that tell her?  Will she even acknowledge it.  Will she even care or believe this works?  What is the real point to me either way? 

all my best

John

RRMSi/EDSSi 4.5 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, reading this,

John, reading this, something else comes to my mind straight away: clearness of mind as much as physical improvements........Sarah
 
An Itinerary in Light and Shadow
Wheldon regime since August 2003, for very aggressive SPMSi.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.
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.