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

boadicea

30 Dec 2019 01:38 pm

Kiki - it's not always easy to think back, as it's a long time ago now, but the things which leap out at me:  I'm not surprised when you say that you were OK until about pulse 7/8.  They do seem to have a cumulative effect and almost lull us into a false sense of security, I always found.  Then suddenly hit hard when we aren't expecting it.  You say that your only reaction to the pulses was emotional upheaval etc, but it sounds to me as though the tinidazole might have been causing more die off and inflammation than you realised, hence feeling worse physically.

All the neuro loss and increased weakness that I experienced when I started the protocol eventually just resolved itself, leaving me far better than I had been for a very long time.  I never really pushed myself physically or exercised to get it back - it happened on its own, when it was ready.  I did have to have physiotherapy fairly early on - I found the local MS therapy centre really helpful with this - because, before starting abx, I had tried to continue to walk inspite of the increasing weakness and got into a way of walking which causing my foot to turn inwards as I'd been unable to lift my heel in the way needed.  I'm more sensible these days, and would use a walking stick or crutch, now I know what I know, to avoid that happening, but thought determination would be enough at the time.

The thing I did always try to do was 'exercise' within my ability. When I felt too ill, I staying in bed.  If I could get showered and dressed, that was a bonus.  When I felt OK, just walking around the house using a crutch.  Then, as things improved, I would drive to the local shopping centre, and have a bit of a walk there, even if only for a few minutes.  Just that sort of thing.  It's not easy to explain, as it's like no other experience, but the improvements really did just happen all on their own, at first with just tiny glimmers.  But that wasn't until at least 2 or 3 years into treating. For the past couple of years I've been able to go for walks of about 5 miles, which I hadn't been able to do for well over 30 years! xx

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

neenavyas

6 Jan 2020 09:42 am

dear Kiki

This whole business is very tough indeed and tougher for you having to look after the children. In India Sonal is luckier as she has some house help and my son often works from home -- except when he is travelling that's about a week in a month at most -- and is also around to help, often cook dinner and so on.

Sonal could not have managed at all without help as she is often not able to get on to her walker and even move around the house on her own. Her mobility is not better since the protocol, but her spirits are and she also feels better able to cope, mentally, even if not physically.

I am thinking that in her case, and perhaps yours too, the positive effects of the protocol may take longer, as they did for boadicea. But do carry on. DO NOT GIVE UP> for there is nothing else out there. And many have improved radically. Your turn and that of Sonal will hopefully come some time this new year!

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.

Kiki

6 Jan 2020 02:27 pm

Hi Neena

I may talk utter rubbish at times when feeling cornered but I never give up- that's never been my ancestry😁🙏💖.

I started today with my planned 3 day Tini pulses. Looking at other supporting supplements too. Lets see how that works.

Kiki

Ps. Lots hugs to Sonal too💖

Kiki

7 Jan 2020 12:14 pm

Pulse update. So day 1 of restarted pulsing caused a head ache. Day 2 intensified headache, felt cold and shivery but hot face as like a fever/ flush and a sick feeling like wanting to heave. Probably due to excess saliva since day1 and tummy feeling sensitive. Slept some this afternoon and generally trying to do utmost of minimum these 3 days.

Kiki

neenavyas

12 Jan 2020 12:50 am

Good Kiki that Boadicea has helped clear your thoughts that it could take longer for you as certainly for Sonal. I am separately posting Sonal's eighth pulse experience. It went off smoothly and I am really looking forward to her completing one year of protocol -- three months away -- when I do feel she will be ever so slightly better. Love. By the way my niece from London is coming next week and will go back in a week's time. Anything you need?

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.

Sarah

7 Jan 2020 02:55 pm

That's nitroimidazoles for you! You should soon get used to it again!

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.

Kiki

8 Jan 2020 02:18 pm

So day 3 passed better- just found myself hungrier and so I listened to my body and feasted away. Still excessive amount of saliva I find. Having had a lengthy break from pulsing and knowing I'm have 4 weeks at least til next one I've leapt again by filling meds boxes for next 2 days with Tini too. I'll play it by ear ( and feel) whether to take them and make it a 5 day pulse rather than 3 day one.

Listen, learn and move slowly like the tortoise is my game now...

Kiki

Kiki

10 Jan 2020 04:38 am

Day 5 of restarted Tini pulse!

I decided to go with it and now I'll have a most enjoyable 4 weeks off! Also started with daily Japanese Chlorella supplements and keeping up with activated charcoals only during pulsing. Lets see how that pans out. Pulse weeks are now my dedicated days of calm and rest whereas the weeks in between will have more of daily physio rehab exercise moments. 

Kiki 

Kiki

10 Jan 2020 11:35 am

Dear Boadicea

Did you find your physical moves like foot drop, walking and using hands and fingers just got better on own with protocol or did you have to do some physio rehab throughout?

Kind regards

Kiki

boadicea

10 Jan 2020 03:26 pm

Kiki - I did have some physiotherapy early on, at a local MS therapy centre.  Whilst it did help in showing me what I should be doing, it didn't really help, because I couldn't do any of it at that point.  So I stopped going - partly because I couldn't do what was needed at that point, but also because there was a certain attitude there, of the need to accept things are they are, which really didn't suit my thinking.  I did what I could, walking around the house or short walks out using crutches, kept taking the abx, and all did just somehow come right.  Same with my hands and fingers, I just did what I could, which wasn't very much, and it all gradually improved and, as it did, I just continued to do more.  Sounds odd, when I try to describe it, but it really did all just come right on its own, when the time was right.

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

Kiki

10 Jan 2020 03:43 pm

Great to hear Boadicea

I felt a bit crap when I saw MS physio at home on Wednesday and realised how little I was able to do and good too!! Got all teary. Then she suggested a MS shrink " to learn to accept new reality of having MS" - which seeing as  til reconstructive knee surgery was needed  in July 2018 due to a freak accident during my 3 times a week kick boxing training and then a following freak discovery so diagnosis in Oct 2018 of MS left me feeling so unprepared for tears to follow! Having the knowledge of this protocol I have never entertained Shrink needs nor the MS to be my ever after life story!

Im just wondering how much physio program will help me compared to general living and doing as much as poss during protocol and end up kinda ok still. Seems my journey is much more like yours so feel a connection to your path.

Kiki

boadicea

10 Jan 2020 04:58 pm

Ah, yes I understand, as that was why I had to stop going for physio at the MS therapy centre.  I was surrounded by people who were accepting things as they were - and other people determined to make people accept things as they were.  None of them were looking for answers and they certainly didn't want to know that answers may exist. I decided the best thing, for me, was to just do as much as possible in the way of general living.  Really, honestly, I eventually found things just gradually got easier to do - at first, just glimmers of improvement, which then disappeared again, but, eventually, those glimmers started to hang around for longer. Though I did have a tough time with the abx to reach that point - and it all did take time.

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

Kiki

10 Jan 2020 05:31 pm

Your story so my understanding gives me glimmers I need so thank you! It's such an unknown world for me to be incapacitated never mind sooo much too. I only mentioned my sporty days as I was rather a very active and doer kind of person before this beast took hold of me. And by gum..I'm gonna shake it off my back!

Pep talks like these spur me on- I hope one day my story will help another member just like yours really comfort me!

Thank you Boadicea

Kiki

ElizabethAnne

13 Jan 2020 06:35 am

Hi Boadicea,

You describe exactly the process I'm going through. Little, tiny improvements that come and, sometimes, go a bit. 
If you saw me walking to work in the morning (1/2 mile, flat), you'd worry! As the day goes on it's better and better. Until the next morning. My long walks in the weekend are getting longer, almost imperceptibly. I use an excellent walking aide for this - FES. It helps me lift my dead leg.

On Saturday I went to London to see an art exhibition. Up and down the escalators, walking from station to station etc -- all doable. I was escorted by friends and driven to and from the station at home. I don't try and do too much. It's frustrating, but it's where I am. I'm so much better than a year ago. 

 

best wishes,

Lizzie

 

Elizabeth Anne

neenavyas

12 Jan 2020 12:57 am

Hi all,

Sonal yesterday completed her eighth five-day pulse with metro. As usual she felt nauseous and this time also feverish, she tells me. The strangest thing was at end of third day of pulsing, that night she could not sleep as she felt some strange sensations in her right leg ( the worst leg although both are bad).

If I remember from Katman's blog long ago she too felt strange sensations in her legs. I am hoping that was a good sign.

Sarah I also wanted to ask you what the following means? Sonal told me that during this pulse one day she was able to keep standing unaided and not holding on to anything for about 10 seconds, the longest she has been able to do this for maybe a year. I am thinking it is a very good sign. But yet far away from even one step =-- for that you need to stand on one foot for a split second and balanace yourself when the second foot comes down! All so complicated. All 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.

neenavyas

14 Jan 2020 01:16 am

dear Lizzie

yes I am hoping that was excellent news and would lead to something a little more positive for Sonal in the next few months. I cant wait for time to go by! I know it is a long long wait uphill but good to take even just one tiny step to the top. I understand from your progress that even after several months of positive signs it is a long long way to go. But carry on each one must. Love

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.

ElizabethAnne

16 Jan 2020 05:28 am

Hi Neena, you're quite right. I remind myself (actually, my husband who gets more frustrated than me) that CPN has been burrowing away for 30+ years, so repairing the damage will take time. 

How is Sonal feeling? 

All best wishes,
Lizzie

Elizabeth Anne

ElizabethAnne

21 Jan 2020 02:30 am

Hi everyone,

 It’s now been 3 weeks since I stopped the protocol. I restarted this morning. I figured that since I had had no symptoms of MS at all since I started doxycycline, I should be free of CPN. 
Since I stopped the drugs, my walking has not improved like it was, in fact it’s deteriorated. Also, I might have mentioned that before I started the protocol I used to have sores in the inside of my mouth? Well, I’ve had two. 
I was too soon.No matter — pulse next week. 
Bye for now,

Lizzie xx

Elizabeth Anne

Kiki

21 Jan 2020 03:23 am

Hi Lizzie

Maybe its best to consider 1 year of protocol of when you started the TINI/METRO pulses rather too as in thats the meds that are the actual killers of CPn?

Love Kiki

boadicea

21 Jan 2020 12:50 pm

Lizzie - I’d always recommend that listening to your body is more important than looking at the calendar. Sorry you aren’t ready to leave us just yet, but keep up the good work. x

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

ElizabethAnne

22 Jan 2020 04:19 am

Thank you, Boadicea. Thing is, I thought it was indeed gone — no symptoms since Jan last year. But why not restart.  There is no good reason, and I’ve had so many benefits from the protocol. What Kiki said about 12 months on the pulse makes sense. 
I m happy about this. ☺️

Elizabeth Anne

Jan Figtree2019

21 Jan 2020 02:34 pm

Hey Kiki!

That's my plan too.  I won't even try the intermittent protocol until May of this year.  April 2020 will be a solid year of pulsing Tinidazole (the full protocol).

I am also going to up my dose of N-A-C to 2400 to see if my body is just fine with the increased dose, or if it causes more problems .... a test, if you will, about the numbers of Elementary bodies (of Cpn) in my body.

Thanks for writing this comment.  It's good to know others are thinking along the same track.

Jan

 

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

Kiki

21 Jan 2020 03:44 pm

Hiya Jan

How do you mean NAC will poss work/ have a different effect on you with higher dosage by the way? I've taken it throughout protocol tho I think Sarah said Id really mainly need it once going intermittant. Guess I thought itd protect me from taking so much meds over lengthy time. Could it be causing my sluggish recovery poss? And what will a higher dosage achieve do you think?

Kiki

Jan Figtree2019

21 Jan 2020 09:53 pm

Hey Kiki--

Have a look at these two links:

http://www.davidwheldon.co.uk/ms-treatment1.html     Scroll down until you find the paragraph about NAC and how it kills the Elementary Bodies of Cpn.  

https://intracellresearchgroup.com/chlamydia-pneumonaie/   Scroll down until you see the nice diagram of Cpn's life cycle.

All the antibiotics we take target/kill different bodies of the Cpn lifecycle.  And NAC is a critical component of the whole CAP.  I want to take the MAXIMUM dose of NAC (recommended by the protocol) which is 2,400 mg/day.  Right now, after a year of the CAP, I am at 1,800 mg/day (I spread this out!.... I take 600 mg in the morning, 600 mg mid-day, and 600 mg before bed).

I had trouble taking NAC initially....  I had massive die-off reaction (of dying Elementary bodies).  But now, the 1,800 mg/day is pretty easy.  

On my to-do list is adding the final dose of NAC --bringing my daily dose to 2,400 mg.  I will add this last dose to my mid-day dose, so the NAC schedule will look like this:  600 mg/morning, 1,200 mg/mid-day, and 600 mg/before bed.

For me, when I introduce this last NAC dose, my response should be telling:  If it's easy, and no side-effects (die-off of Elementary bodies), I will conjecture that the CAP has whittled down much/most of the Elementary bodies.  If I have a more difficult response (die-off causes discomfort:  sinus clogging up, feeling tired, even nauseous), I will conjecture that I need to 1.) definitely get to the maximum dose of NAC and stay there and 2.) I am probably NOT ready to move to the Intermittent Protocol.

NAC makes the CAP more effective, and I want maximum effectiveness.  

 

When I do move to the Intermittent Protocol, I have decided that I need to:

1.  have been on the full CAP (start date from first pulse) for one solid year.

2.  not have any reaction to full dose of NAC.

 

When I do decide to start the Intermittent Protocol, I intend to stay on the full dose of NAC  (and will probably continue for many years after finishing all antibiotics).

Also, I have noticed a couple things in David's paragraph about how to approach starting the Intermittent Protocol.  He uses the words "may" and "cautiously"  --this is important.   Cpn is a VERY tough bug to erradicate.  The CAP/Intermittent Protocol will vary from patient to patient in terms of its duration.  I think David is saying approach the move from the Full-time CAP to the Intermittent CAP very cautiously. 

I think I have a very severe Cpn infection, and want to take my time in doing the CAP---I want to be cautious and thorough in killing it.  While I am excited about the progress I have made this past year, I in no way think I am "done".  I have quite a lot of inflammation in my body... and I think the Cpn is causing it.  

I am suspicious of "persister cells" that hide in biofilms in the gut and other places in the body.  These persister cells (of Cpn) just hunker down and wait out any treatment in the biofilm ---and they can/do survive lots of antibiotics.  When the AB treatment is finished, the persister cells are activated and start a new infection cycle.   I want to prevent this by being cautious/thorough and take the full dose of NAC.

Bottom line:  NAC is critical to my success with the CAP.

 

This is a bit wordy, but I hope it helps

Jan

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

boadicea

22 Jan 2020 02:29 am

Jan - when taking the full dose of NAC, it’s generally taken as 1200mg twice a day. Is there any reason you feel your schedule would be better?

Also, you mention biofilm - I’ve been told Cpn doesn’t have biofilm. Just to mention though - if there is biofilm present from any other infections, that NAC will act as a good biofilm buster (according to the herbalist Stephen Buhner).

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

Jan Figtree2019

22 Jan 2020 09:43 am

Hi Boadicea--

There is no reason my NAC dosing schedule is better.  I just have a lot of pills to take all day, and I like to spread things out.  

Biofilms:  I too have read that Cpn doesn't persist in biofilms.  But I don't think the evidence is conclusive.  Biofilm research is growing rapidly.  Even if Cpn doesn't persist in gut biofilms, I think there is strong evidence that it does form microbiomes in our mouths and arteries---all over our bodies....  

It is such a difficult bug to eradicate that I have to assume (for my own long-term health) that it will probably be in my body after I finish the CAP.  And I have to plan for that, and be vigilant about relapses.  

Overall, I am working on the assumption (out of an abundance of caution) that Cpn does indeed persist in biofilms and can evade antibiotics (even combined antibiotics).... hence my plan to take NAC long-term as a prophylactic measure.

 

Have a look at this article (just came out last year):  (Just as an example of where the research is going)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6563687/

I only have one book by Stephen Harrod Buhner, _Healing Lyme:  Natural Healing of Lyme Borreliosis and the Coinfections Chlamydia and Spotted Fever Rickettsioses_ 2nd Edition. (Revised Ed. 2015).  I re-read his section on Biofilms this morning (pp. 162-65).  It is an excellent overview of how unhealthy biofilms work and includes suggestions/recommendations about how to combat them.  Well worth the read.

I remain suspicious about Cpn and its ability to hide/evade antibiotics.  So, my personal protocol (beyond CAP) includes lots of work on biofilms -- primarily by creating a healthy robust gut.  I am also using proteolytic enzymes to help break apart plaques in blood vessels.  Etc. etc.

Good questions.

Jan

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

Jan Figtree2019

22 Jan 2020 10:36 am

I did not include all my thoughts about why I take NAC  throughout the day:

NAC has a half-life of about 5 1/2 hours.... It's quickly excreted.  

But I want NAC in my body as many hours of the day as possible.... I want it killing the Elementary bodies of Cpn as much of the time as possible. I want to kill the Elementary bodies constantly.  

So, I take my NAC three times a day.   I try to augment the coverage by taking the extended release version (see below).

These are the two kinds of NAC that I take:

1.  Jarrow NAC-Sustain (available on Amazon)

2.  Jarrow just NAC (also available on Amazon)

 

If I could afford it, I would only take the NAC-Sustain.  It would increase my coverage, but I have other supplements I have to buy. 

It may not matter that I do this.  But it seems logical that the Elementary bodies are constantly doing their toxic thing (attaching to cells, invading cells, transforming inside the cells to the "Reticulate Body".... and then replicating (reproducing!)..... I just don't want to have large gaps of time without NAC in my body.  

I want to constantly lower the numbers of Elementary bodies as much as possible.  

 

I understand that my way of taking NAC is not the standard CAP, but I think it is helpful to me.   I also take NAC for other reasons:   NAC has neurological benefits for me.  (I am Aspergers).... so it definitely helps improve my mood, helps with attention issues, etc.)

 

Hope this helps to clarify my thoughts.

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

26 Dec 2018
Kiki