5 Apr 2019
Author
Kiki
Title

NEWBIE- advice and experiences please! Protocol starting JAN 2019

Body

Hi all incl Sarah and David! I'm new to here. Just recently weeks ago I was diagnosed with intermittant relapsing MS. Seemingly it all started in 2006 with optic neuritis then 2011 with lower limbs tingly,/ numbness. I have been started on daily Copaxen injectitions. But with a severely disabled child Im struggling both physically and mentally. Please help with advice as to how where, who, how much etc to get started on Wheldon Way of treatment. I believe in going in for the underlying cause rather than just band aid stuff. Thank you! Kiki Bojanic

Comments

Hi Kiki,

It will!!  It will!! Hang in there and keep going forward. We are in this together. What supplements do you take? Would you like to compare notes?

Warmest hugs,

Ronni (Toliveagain)

CAP on my own since 04/20. Roxi 300/Doxy 200/Flagyl or Tini pulses every 3-4 wks/20+ supplements adjusted monthly. Battling die off & porphyria often. First improvements noted @ 8 months.

How long did it take for some folks on here to truly feel a corner had been turned? I've now since returned to full time meds route since I first started outJan 2019 and after a 6 month plus period on intermittant. As I've only gone downhill recently I felt the need to try once more to cure myself. After such a long time and without any signs of improvements I'm naturally doubting myself but I have no other support than what I get on here so it'd be awesome if more successful folks can share help and tips.

Kiki

Dear Kiki, thankyou for starting this thread because I would like to know the answer myself. So many people here have come and gone over the years now since I started my treatment in 2003 that I have lost track.

I started in August 2003 and took full-time treatment for a year. I then moved on to intermittent for the next three years.

I took doyxycline and roxithromycin then pulsed metronidazole eventually swapping for tinidazole. I took rifampicin for six months but felt worse during this time.

When I started I did not think that it was going to work, but now am very glad that I did.

Sarah 

 

 

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

There must be people still here who can talk about their early experiences! My improvements mostly happened quite quickly but this can't have been the case for everyone because the site is still being used: if it was only me who had improved, cpnhelp would have long since vanished.

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi Sarah and all members,

I started the abx protocol August of 2019, not that long after Kiki, Jan, Sonal and I'm sure some others. I didn't have any consistent improvements for about 12 months. After taming down my nighttime leg spasms with calcium, magnesium and potassium, my sleep time improved a lot. I switched to Roxi for daily use and Tinni at my 14th pulse. Better mental improvement followed. Then, about 2 weeks ago I asked a friend to turn my treadmill machine around 180 degrees so I could get close enough to pull myself up using the waist-high side bars to support myself. With its slowest belt setting and a dragging right foot......I took my first step in almost 2 years! I've managed a few more 'walks' for about 5 minutes each which are very challenging. Between fighting foot drop and the weak right hand (both things that you overcame, Sarah) I will keep moving forward with pulse #20 in a few weeks! :)

Be well,

Chris

 

I am a retired guitar repair/restorer after 35 years. I live in Colorado and am wanting to now restore my health!

Congratulations on your walks!  Keep going.  That's pretty much what I said to myself and still say to myself every day.

Jan

56 y.o. with possible dual diagnoses that I am working to confirm this year: Ankylosing Spondylitis and Scleroderma, and minor Psoriasis.

Dear Dear Chris and all,

right now I send you a big hug for this wonderful news. Hopefully the exercising will help improve further. Do keep us all posted on this exciting development.

I am particularly excited as Sonal was also like you already in bad shape when we found the protocol. So it is very encouraging to know that even starting at late stage can help.

As I mentioned earlier the tensions that accompanied the pandemic have not helped Sonal at all -- no massage no exercise, children working from home, taking exams from home. Then one help got Covid and was hospitalised. I think all that worry -- and she is a worrier -- worsened her condition. But again now I see some steadiness and recently she found a good physio guy from MS Society here.

Carry on I would say to Chris you Kiki and others.

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

Oh Neena, I'm glad that Sonal has managed to find a physio, and one who knows something about MS!

Sarah 

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Dear Sarah

Yes Sonal is happy with the physio and even better he is now vaccinated for Covid with both doses in a week ago!

But Sarah the year 2020 has been bad for her -- as so so bad for you with David gone -- She is now wheelchair bound even at home and her right hand has become worse. She cant write with it nor hold a spoon or fork. She uses her left for eating now and with one hand gone needs help to dress and so on. My son does everything for her while working from home. Her mother comes in when he has to go out urgently.

But again i think or want to believe that in the last four months or so since she went back to pulsing (which you know she took a break from for six months or so. on hindsight it was a bad idea) she seems to have steadied even if not any better.

The news from Chris has been wonderful and uplifting for all.

And how are you coping with your huge loss? I cant even imagine. By the way did your mother live on the Isle of Skye? The other day there was a wonderful programme on Grand Designs in architecture and it showed a house built on the Isle by two women. What a landscape!

Take care.

Neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

Chris, how wonderful and when you least expected it!

I must say that my right foot is still a little weaker than the left but not visibly. It always being my right hand that I wanted back. 

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Thanks Sarah! I believe I still have a long way to go. Another negative thing that I developed in the last 16 months or so has been edema in both legs from my knees to all ten toes. I've been trying to cut back on salt consumption. I know it can retain fluid in your body, especially in extremities. Not being able to exercise certainly is a big reason.

Pushing forward,

Chris

I am a retired guitar repair/restorer after 35 years. I live in Colorado and am wanting to now restore my health!

Chris, another reason other than too much salt could well be not drinking enough water: this might sound counterintuitive but your body might just be trying to hold on to the fluid it has.

Google it!

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Chris, that is wonderful news. I am sure you will keep improving. Those of us with heavy bacterial loads will take longer to kill off the bacteria and repair.

Kiki, I feel like you and I are in this together because until I knew about Chris, I thought you and I were the only ones still on this site on the protocol.

I will try to catch up on relaying where I am at. 2017 I had my first definable symptoms but denied to myself. Looking back I had had vague RRMS episodes for 20 years but they were small and easy to blame on something else. The 2017 episode was the first really big attack. 2018 I had symptoms of right foot drop, left arm paralysis, bilateral Trigeminal Neuralgia, Afib, slurred speech, nystagmus, double vision... as well as just about every other symptom associated with MS. Not altogether, they rotated throughout that year. In the beginning I was able to make excuses for each (again), like the arm paralysis was because I had been lifting heavy tiles and had pulled something. But that year was HORRIBLE and by the end of that year the diagnosis was undeniable. I knew I had MS. I had an anonymous MRI that showed lesions and had two physician friends say to me, "You have nystagmus, have you ever been checked out for MS?" Then I got a bit better - obviously RRMS but the episodes were getting closer and I knew in my gut, I was converting to SPMS. By late 2019 things got worse.

The big one for me was memory loss, cognitive decline and the above symptoms returning more severely and so frequent that they were on more than they were off. I felt I was near needing inpatient care with many days where I had trouble taking care of myself. I have never had an "official" diagnosis but I work in the medical field and had co=worker doctors do a curb side on my anonymous results. I did not want to go the standard medical route with expensive drugs that harm more than they help. I figured if I couldn't figure something out on my own, I would let nature take its course. I started combing through research studies and developed a course of supplements (coincidentally almost exactly the same list as Dr. Wheldon) and started taking those in Jan 2020. A few months later I found and started the Wheldon protocol, but being so far along (near in patient) I felt I had to accelerate. I have been on CAP since April 2020. I am in month 11 with 12 pulses completed. 

I have to say that within 2 days of starting antibiotics, I started to feel worse. Some days were a bit better than others, but for the next 8 months the trend was definitely downwards each day. I had one very very good day in month 6 that kept me going with the hope I would get more days like that soon. One day!!!! Actually only about 5 hours of one day where my head was clear, my spirits high, I went for a jog (more like a fast walk) around the block. Then right back into hell. But it was enough to keep me going forward... that and I just kept saying to myself, 'what choice do I have?'

Decline, decline, depression, so many days I would think the same as Kiki is now... that my MS was progressing and the antibiotics were not helping and were probably killing my liver and kidneys. But, 'what choice did I have?' I would get these weird symptoms like horrendous burning feet (lasted for over a month), and bone-aches that moved around my arms and abdominal bloating, etc. I would come to this website and read other posts where people had experienced the same symptoms, so I kept telling myself it must be working because others had the same. And sometimes, maybe, it might have been wishful thinking, but I kind of noticed blips of improvement in whatever area or symptom had just been worse. But the improvements were so small that even journaling didn't clarify things. My journal entries are all over the map.

Then in late month 8, I had 4 days that were just as incredible as those 5 hours I had in month 6. Almost all symptoms were gone and my brain hummed. All except for memory, that was still shit. But I felt so good those 4 days. Then, poof! Everything went back to the way it was before, crap!!

I am starting month 11 and have 12 pulses under my belt. Although my pulses are not full pulses. I usually can only take 250mg Flagyl (how it comes in the country I live) twice a day for 4-5 days. Then I have 2 weeks of pretty profound die off and porphyria. Then a few OK days, then I start another pulse. The reason I am doing it this way is Stratton at one point said those with MS needed to accelerate the protocol. And somewhere I read, it was either Stratton or Wheldon who said something about how ultimately, one should be able to take Flagyl every day without die off. So I am working on closer timed pulse intervals as an acceleration and to try to get to daily, then I will up my Flagyl dose to 500mg BID.

Since mid month 8, my MS symptoms seem to be more predictable now. Before that it was just down hill every day. Since month 8 my symptoms are worse towards the end of and for two weeks after a pulse. There is a definite pattern related to the antibiotics, which now gives me hope the antibiotics are actually working. Whereas before month 8 it was all downhill with no improvements except for the 4 hour window in month 6.

The one thing that is lagging is memory improvement. That still seems to be getting worse around my pulses, and just a tiniest bit better (which is still near Alzheimer's levels) during my good days. I still have not gotten to pre-antibiotics levels with memory except for a few hours about 3 weeks ago. The loss of memory is really difficult. It is nearly debilitating because I have difficulty finding my clothes, remembering my meds. I write EVERTHING down in my phone calendar. If I think of something while I am at the store, I am guaranteed to not remember by the time I turn into the next isle, nor remember it ever again. So I make a note. But even then I usually forget about the note and find notes days later where I can't remember what they were about. But there were a few hours a couple of weeks ago where I felt my memory was coming back. I even remembered my grandmother's bday. Those few hours were the only time my memory has gotten any bit better and they give me hope my old memories will eventually come back.

I am on Roxi 300mg am, Doxy 100mg BID, Flagyl 250mg BID X ~5 days about every 16 days (give or take 2 days) plus about 20 supplements. I take all supplements on the Wheldon list plus about 5 additional ones that I have found research papers that indicate they might have anti-Chlamydial properties. I am hoping I am killing CPN even faster with these additional supplements, and judging from my continuing porphyria, that might be true. I have tremendous die off reactions and am in some stage of porphyria almost constantly. Yes, I take copious amounts of moppers. They do not seem to help much.

The reason I am on this site today is I am having another mild emotional setback. I am just really tired of the porphyria and abdominal bloating. I also feel like I need some indication I am getting better... something positive. The 5 hours in month 6, 4 days in month 8 and couple of hours of memory in month 10 just aren't enough for me at the moment. I think the close proximity of pulses and constant porphyria has gotten to me and I need a short break. I stopped antibiotics 3 days ago (still taking all supplements - even anti-CPN ones) to try to clear the porphyria and abdomen and to see if there is a difference in my symptoms.

Day 1 same ol same ol. Day 2 felt like superwoman and walked miles without balance issues or weakness. Today, IDK, not feeling so well, lesions on hands (porphyria), tired, walking short distance was difficult but abdomen seems to be going down. I don't know whether to go back on CAP tomorrow or give it a couple more days. In reading stories on this site, I noticed Norman took a little break in the middle. I wish he and others were still here on the site to ask questions. I will probably stay off abx for a few more days and then start back up.

So this was a long story to answer Kiki's simple question. When did you turn the corner? For me, late month 8 I started to notice my symptoms seemed to more timed as die off than just constantly getting worse. But the bad days are still worsening with each bad day a bit worse than the bad day before. I feel like the variation of good and bad days is getting wider (good is getting more good but bad is getting a bit more bad). Overall I have this gut feeling that more good days are just on the horizon and I feel the increase in symptoms is die off and repair (I researched a bit and "repair" often is painful) and I have the underlying feeling that my MS is improving but I just can't see it yet.

When I first started I thought I would be on full time antibiotics for 6 months, and then intermittent for 6 months and be done. HAHAHAHA. Now I think I will be on full time antibiotics for probably 2 years, and intermittent for 2 to 4 years after that, and I am probably underestimating again. This is a long haul endeavor!!! I am hoping to add in Rifampin in about 6 months to a year.

I hope this helps someone. All I can say is stick with it. It's one of the toughest things I have ever done, but I know in my heart it will be worth it in the long run. And thank you to anyone and everyone who has contributed to this site. I wouldn't know what to do, and would have gotten discouraged and quit so many times if it wasn't for this site. Every time I come back I find new and more information. There are rabbit holes of dialogue that are so intriguing and informative. I am so grateful for you all!!!

CAP on my own since 04/20. Roxi 300/Doxy 200/Flagyl or Tini pulses every 3-4 wks/20+ supplements adjusted monthly. Battling die off & porphyria often. First improvements noted @ 8 months.

Thanks everyone, for your encouraging thoughts and support! As we all know, the push forward in this battle  inevitably gets a push-back from cpn. After several years of declining leg strength, which led to a walker for about 6 months then ultimately a motorized wheelchair for the last 20, this loss of mobility has been my main challenge. The atrophy to pretty much all my muscles is significant so when I made my recent treadmill walks, the push-back from those comatose blobs of flesh resulted in some very intense body pain. So, this old basketball player has taken the last few days off to recharge! I start my 20th pulse this coming Monday and will continue the war.

So again, thank you to Sarah, Neena, Jan, Kiki and Toliveagain for all of your encouraging comments!

Chris

 

I am a retired guitar repair/restorer after 35 years. I live in Colorado and am wanting to now restore my health!

Dear Chris

your slight improvement has been such an encouragement i am sure to all on the protocol. Carry on soldier. Maybe hopefully the corner you want to turn is just a short way ahead!

Take care

neena

I am 76 years old. My daughter-in-law was diagnosed with MS and we are all very keen for her to start this new antibiotic treatment. We hope to be able to do this in the next couple of weeks by finding a doctor willing to deal with any issues like reactions that may crop up. My daughter-in-law is 43 years old.

I have been an active poilitical journalist most of my life and have felt for a long time that there must be a cure out there for MS which the medical community has largely ignored. I am very excited by the Wheldon protocol.

Hey Chris,

Just a thought. You mentioned atrophy and I know Kiki had said something along the same lines. I just remembered (the thought was lost in brain fog for the last few months) but I just remembered something I saw when researching the Wahls diet for MS (she claims to have cured her MS with diet alone)... anyway, brain fog misdirect. My point is, in an interview with Wahls, she said she used a TENS machine every day.

So about 8 months ago I bought one (easy enough to get online) and was using every night before bed, trying to maintain muscle mass because my balance and fatigue issues precluded much walking.

Side note... I am so impressed with myself, that I used the word "precluded". I used to be a research geek and used big words alot. Now with brain fog, 5 letter words are my max. I am giddy that that word popped into my head and I was able to spell it. Gotta take the wins where you get them!

Back to message... I moved recently and realized after reading your post that I haven't been using my TENS unit in a couple of months. I will start back up tonight. And you might want to look into getting one. In addition to providing muscle contractions, it can be another indicator of progress. In the beginning, I noticed my left foot didn't bounce nearly as much as my right. After using for a few months I noticed a better bounce in my left. It was inspiring at the time. But memory and brain fog made me forget about that. Glad your post spurred the memory in me and I will get back to it. This brain fog is a bitch!!

Wishing you more continued progress. If you ever want to talk, PM me and we can connect. It seems like me, you, Kiki and Sonal/Neena are the only ones still here on the site at the moment. I still get inspiration from reading old posts from 2004-2007-ish. So much information in there. I wish I had found out about CAP and been a part of this community back then. 

CAP on my own since 04/20. Roxi 300/Doxy 200/Flagyl or Tini pulses every 3-4 wks/20+ supplements adjusted monthly. Battling die off & porphyria often. First improvements noted @ 8 months.