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

neenavyas

10 Nov 2019 11:23 pm

Of course you know your body best Kiki, but I do know that Sonal did get worse, and in her condition even the slightest deterioration means a huge step backwards. But fortunately in her case that further deterioration righted itself and she was back to where she had started, although certainly with more energy and hope of a cure, and therefore overall more positivity.

You will of course never know where you would have been if you were not doing the protocol. Same with Sonal. I do believe she would have been far far worse because in 2018 we all saw her deteriorate and with a new low becoming the new norm in her life.

So please keep up the protocol. And do whatever it takes to keep your spirits up -- like some time out with friends. Take care and keep in touch

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

12 Nov 2019 07:47 am

Carry on Kiki

Just spoke to Sonal and each day I hope she has some positive news to share. But no she is more or less the same, but definitely more energy. Now past six pulses she still needs help most times to get out of bed, but is able to sit arouynd the house for more hours than before.

You too please continue with the protocol. Hope by the time one year is completed there may be some light at the end of the tunnel. I still keep thinking of Rica Katman, how she turned around from wheelchair to climbing ladders and mending barn roofs! absolutely amazing. Let us all keep our chin up. xxx

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

12 Nov 2019 07:49 am

Sarah,

I remember that Rica Katman also took Rifampicin for quite some time before she started improving. Is that very different from Doxy and Arizo? Any thoughts why she took Rifampicin and whether it acts differently. Should Sonal be put on it? and maybe Kiki too?

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

12 Nov 2019 01:07 pm

Neena, my opinion is that Sonal should stay clear of it. Rifampicin was in Vanderbilt's one and only trial for MS and it had to be stopped because too many people dropped out: they couldn't stand it.

I took it for six months but only after I had undergone my biggest improvements: for all of the six months I thought I might be getting worse because it made me walk as though I was permanently veering sideways, amongst other things.  My next scan showed that I wasn't getting worse, but this time there were no big improvements like in the previous one, but would I have been able to improve more if I had carried on taking doxycycline instead?

Sonal could maybe try it after a year, but Rica is a much tougher character than me: all those years of farming goats.

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.

neenavyas

22 Nov 2019 01:17 am

Sarah

I only thought of Rifampicin because Rica swore by it although she did say it was very very tough schedule because no food two hours before (and after?). You see Sonal's disability is severe, also like Rica she possibly has primary progressive. That is why I felt maybe she should follow Rica's way. But thanks for clarity. I see your point. Yes, Sonal should continue with her current protocol of Doxy Roxy plus pulses of flagyl at least for full year, that is till April 2020. 

Waiting anxiously for sure signs of improvement. But certainly her energy levels are up and I think her right hand is better as 50% of the time she has gone back to eating with her right hand (in between before starting the protocol, she was mostly using her left).

She still often needs help to get out opf bed on to her walker.

Take care and again thanks for the response.

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

13 Dec 2019 05:29 am

Just a thought...

Does anyone have the answer to why some folk doing the protocol were unable to do pulses for quite a while ie poss 1 year of combo doxy/roxy + supplements before doing Tini/ Metro pulses? What was the reason/stopped them from doing it and when/why did they feel ready to start pulsing ( again) ?

Kiki

neenavyas

15 Dec 2019 12:33 am

Hi Kiki

All I can say is that Sonal handles her pulses rather well. But she does get hugely fatigued normally third day of pulsing onwards, also some nausea.

Sonal started her seventh pulse two days ago -- today would be the third day -- and she has kept to the rhythm of doing a five-day pulse with three weeks (give or take a few days plus or minus) in between two pulses.

No improvement in mobility as yet, but less fatigued, more mental clarity, more positivity. Hope you are doing okay.

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

13 Dec 2019 12:08 pm

Kiki, I don't know exactly, but my C pn load registered as quite small, because there wasn't much left floating around my blood stream, but it was concentrating on damage in my brain, in intracellular mode.

As well as this, I had always been generally fit and healthy and lived a generally stress free life.

It would help if a few more people could come here and say why they found pulsing either hard or easy.

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.

Kiki

16 Dec 2019 09:16 am

Any news/info on why some folks felt unable to do pulses and took awhile to start pulsing once protocol was started? REALLY could do with the help to understand my own process. Pretty please🙏💖

Kiki

ElizabethAnne

17 Dec 2019 11:11 am

Hey Kiki, 

My pulses have been completely symptom free. I followed Sarah's advice from the start and stuck with Doxy, then Azith only for the first 3 months. I drink no alcohol when pulsing and for years I've taken vitamin supplements.

Other than that, I lived as normal. 
Hope this helps. xx

 

Elizabeth Anne

Kiki

17 Dec 2019 05:27 pm

Hey Lizzie

I'm rather worried about my leap of faith journey now. Having started protocol 7th of Jan this year I did same re only Doxy and Roxy for 3 months plus arsenal of supplements. Ive always been a sporty capable person with full knowledge of healthy living and brimming with belief and inner strength. I dont drink nor do stuff to excess. I believed myself fairly healthy in mind and body. I did 9 pulses and havent done anymore as Im so incapacitated now and far more disabled then Ive ever been and deffo more than when I started out. I just seem to have gone worse and worse. Im now wondering where Ive gone wrong, are my ordered meds from abroad the real thing/ too old so no effect and whether I should just quit now and do what NHS neurologist prescribed me  ie Copaxone or something stronger?

I now see myself soon needing a wheelchair the way I'm schlepping about ( struggling to lift leg, walk any distances, shoulder/ arm/ hands and fingers operating worse to the point of sometimes not having any control over them  and this isnt the way I thought I was going since diagnosis just a year ago. Never mind trying the curative way forth. I'm rather feeling conquered and deeply sad. I seem to just worsen week by week. Having a respite from pulses too has not made an ounce of difference. My partner has quit work as I can't function properly for kids or myself. I'm not able to use knife so resort only to him and others chopping my food up and I just eat with either a fork or spoon. I've had to apply for a blue badge and PIP as struggling so much and I hardly leave the house as all is such a struggle. Feeling totally bewildered and at loss what to do now really.

I'm far worse now than at the start of the year. Having an MRI scan this Friday where I was hoping to see improvements after last one I had at the time of diagnosis. Now I just worry they'll find something worse as I've gone so much more downhill.

Kiki

ElizabethAnne

18 Dec 2019 05:20 am

Hi Kiki,

Well, I don't know what to say. I'm really sorry to hear this. My healing is certainly not constant and linear, but it is happening, slowly. 

Did the Pulses affect you badly? Something must have been happening there, the die-off causes the issues (I believe).
I wonder if the other drugs are indeed out of date, or faulty. Look, I did mention this ages ago: I was talking to an MS friend who was quite disabled. Before I told him about CPnhelp, he told me he'd had peritonitis, rushed into hospital, almost died, 10 days on antibiotic drips. And that after, he had felt great and could walk for the first time in ages. But then down hill again.

Perhaps DW or Sarah could suggest other types of antibiotics? So sorry, Kiki.

xxx

Lizzie

Elizabeth Anne

neenavyas

26 Dec 2019 02:54 am

Sorry I hadnt been on the site for nearly a week or more. First a belated merry Xmas to all and hopefully the New Year will bring joy and better health to all of us. Kiki I just read the long old blog of Bod. It seems that for years he didnt improve then suddenly he did despite very short pulsing. May be you need to go slow. But I woul;d say dont give up. Its the only hope.

Sonal has also not improved, but hasnt got worse. She started the protocol in early April and exactly after three months, that is, early July she did the first pulse. She has kept to the schedule of roughly three weeks between pulsing, five days of pulsing and so on. She completed seven pulses earlier this month. Sarah says she did only six pulses in a year, but Sonal will finish 11 or 12 by the time she completes a year, so maybe she too should give a gap of four weeks between pulses. I dont know.

If there is a way I can get the meds to you -- where do you live -- I could try. My niece keeps coming here and going back to London.

In Sonal's case I feel that since she had deteriorated rapidly the previous year, not getting worse is also an improvement over the previous situation. But in your case getting worse is a bit puzzling. Has the MRI result come in? Do keep in touch. Lots of 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.

boadicea

26 Dec 2019 04:25 pm

Good to hear you have read through my blog posts, Neena.  As I remember it, improvement came very slowly, almost imperceptibly.  For a very long time it was just glimmers of improvement - which would appear briefly, but then disappear again.  I always saw these glimmers of signs of better things to come.  We always say it's a marathon, not a spirit, and learning to be patient seems to be a very important part of it.

The schedule of pulsing is a good guide, but I always feel it is also important to listen to your body.  If Sonal feels ready to pulse after a 3 week gap, that's fine.  But if she were still struggling to get over the last pulse, then a longer gap would be a good idea.  It sounds, from what you say, as though she is coping very well.

I chose Boadicea as my online name because she was a warrior Queen - she led the British Celtic Iceni tribe in an uprising against the occupying forces of the Roman Empire.  It always seemed appropriate, given the battle we have to try to get well.  Oh, and just to mention, I'm female.

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

neenavyas

27 Dec 2019 03:21 am

Hi Boadicea,

great to hear from you. It seems from y our blogs that you carried on with the protocol for years. Did you intermittent after a couple of years or carried on with the regular continuous meds. 

Pardon me if I sound too inquisitive. It is only because each one's experience is learning for others. Were you in a bad way, disability wise, when you started? and how much have you improved? when you said improvement came slowly, may I ask after two years or when?

I often worry that we came across this protocol when Sonal already in bad shape. Could not take even one step on her own and has difficult getting out of bed on to her walker, which is always by her bedside. She needs help. We are hoping that she is able to do  this -- getting on to her walker and moving around the house on her own as soon as possible. By that I mean one has no option but to be patient. But was the protocol too late for her. Will she get better. That's my worry. She is just 44 years old and has so many years ahead of her. It is very hard on her family -- her husband (my son) and the children and of course her. And she is a lovely person and remains cheerful despite all the health issues.

But all said and done I know if it hadnt been for the protocol, she would have been far far worse for she deteriorated rapidly from mid- 2017, through 2018.

But my god I repeat this protocol has come like a miracle. Cheers and hopefully the New Year will being better health for all.

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.

boadicea

27 Dec 2019 07:44 am

I was in a very bad way by the time I started abx, as, at that point, I had been misdiagnosed for over 20 years.  My neurological symptoms were very severe, struggling to walk or dress myself, lots of cognitive issues, and no sensation left anywhere at all.  By then, I really saw the abx as my only hope of surviving. I took abx continuously for, from memory, well over 5 years and then did some intermittent for about a year of so.  I stopped at that point because I wanted a bit of a break from it and the chance to see how I was without abx.  In the last 2 years, I have been able to walk long distances (up to 5 miles) and all other symptoms had either resolved or improved considerably. I would say I have still been a long way from being like a 'well' person, but I always appreciate every good moment and make the most of things.  My neurologist, who has been supportive throughout, did say he had never seen such an improvement in a patient before.

When stopping abx, I always knew I wasn't completely done, because of the way I was still responding to the abx.  I needed a break at that point though.  As I've had some symptoms return in the past few months, I'm now starting abx again and really hoping I might have an easier time taking them this time.

I found the best way, for me, was not to over-think things or keep looking out for improvements.  My journey was always far too up and down for that.  I think it's better just to commit to the treatment, take the tablets each day and not worry about anything else.  Progress seems to come best when we're not looking out for it.

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

neenavyas

1 Jan 2020 12:18 am

Dear Boadicea,

thanks for being so prompt with a reply. I have immediately emailed your response to Sonal, my daughter in law, as I have said before we all wonder whether the abx was started by her too late for her. But I really think this year will bring some cheer. She is so very disabled by MS that not able to walk around the house freely even with a walker.

But the abx does seem to be working as no deterioration since she started, althouth initially she seemed to get worse. That was about a couple of months but has been steady after starting the pulses.

New Year greetings to you. Wonderful that you can walk five miles! that's a long walk by my standards since I barely walk myself since I have arthritic knees. I think my  limit would be about one mile!

The discovery of this protocol has been a miracle really, but everyday I wonder if I could have chanced upon it earlier if i had diligently gone on the net every day. Cheers

Neena

M

 

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.

boadicea

1 Jan 2020 03:52 am

Neena - no further deterioration really is a positive.  That’s good.  No, I don’t think it is ever too late, but it just means greater patience might be needed when waiting for those glimmers of better things. I’m cheering Sonal on and hoping the new decade will bring us all good things.

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

neenavyas

2 Jan 2020 03:22 am

Yes I too think no further deterioration is a positive sign considering the previous ten months she sank rapidly and every two weeks hitting a new low.

By the way I was wondering that apart from antibiotics pulsing and recommended supplements did you observe any dietary rules?

Why I ask is that for a couple of years before starting protocol Sonal had given up dairy and all wheat products . Now she has stopped observing dietary restrictions. She was wondering whether she should continue avoiding the above two Other wise she tries to heat healthy almost always home cooked stuff, very little processed food and so on.

After hearing from you I was thinking that maybe Sonal too will take a couple of years before she is really better. Her first goal is able to dress herself comfortably and walk around the house without help or aid. Rest can take its time. Cheers

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.

boadicea

2 Jan 2020 05:19 pm

Neena - I’ve had gluten intolerance (it affects me neurologically) for a long time, so I always stick to gluten-free. Other than that, though, I’ve never changed my diet, as I don’t want to become restrictive about it. I just try to stick to good healthy diet, with as much organic as possible. 

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

neenavyas

6 Jan 2020 09:36 am

Dear Boadicea

Sonal too was on a gluten free and dairy free diet but recently she stopped that. She was not particularly gluten intolerant but was testing out whether that would make a difference. But that was before she started the protocol. Moire recently she has given up on the diet but takes all her meds. In any case i will tell her about yout gluten free diet. Maybe she will be tempted to go back to being gluten free -- but she loves her bread and the Indian rotis and paranthas like Mexican tortillas! cheers

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

6 Jan 2020 01:49 pm

Neena, if it is any help to Sonal, I have never been gluten free. I have a friend who is, but then she had turned out to be a coeliac, so really had no choice!

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.

neenavyas

7 Jan 2020 02:42 am

will tell Sonal. She has no obvious symptoms of gluten intolerance and did not get better by giving it up (before the protocol). Now she feels the dietary restrictions may not be needed. She gave up gluten and dairy as she wanted to experiment if that would help in any way.

Thanks for sharing your experience.

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

30 Dec 2019 07:46 am

Dear Neena

Yes Im a bit confused with my deterioration curve too. Ive now had a fair bit of pulse break and no difference to my physical being really so Im pulling my boot straps up again with new efforts and plan. 

Got a physio lady coming the 9th Jan to initiate some program to help strengthen muscles, movements and proprioception after I requested so. Kids back to school 6th Jan and I'll restart pulses. Poss shorter pulses like 3 days ( thinking I always felt the pulse effect most on day 3 or 4- maybe this was a message from my body?!) And then deffo having a longer time like 4 weeks in between pulses.

Tho I have plenty Tini for my planned year protocol plus intermittant Im going to be low on the Doxy and Roxy as my plan was changed due to the journey not going as straight forward as I'd thought and planned for sure.

I'll be counting up what I have left and see how long that'll last me soon and fingers crossed orders are still able to reach me. Thought Id covered myself but now not as sure. I'm in Manchester England.

Lots of love for your constant care for me and pep talk! God knows I'm in need of it and you are like a huge and wanted warm ether hug Neena🙏💖💖

Kiki

neenavyas

7 Jan 2020 02:38 am

Dear Kiki

I cant promise but could try and send some Roxy Doxy flagyl through my niece who could then post it to you. But I am not sure with stricter regulations whether she will be expected to declare to the post office. I will find out and let you know. Keep up your fight against MS

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

18 Dec 2019 12:17 pm

The first thing I would like to say is that when I had been on the protocol for the same amount of time, I had only done about six pulses, which makes me think that, for you, you are going a bit too quickly.

I would definitely give pulsing a break for a little while  your system recuperates, then do what I tended to do which was make my three week pulses closer to four weeks: three weeks off then five days of metronidazole. Try to keep up with clinical doses of doxycycline and roxithromycin though: there are people who take just doxycycline for years because of acne, with no trouble.

I doubt very much if your abx are faulty because I know of other people taking stuff from the same pharmacy, with no complaints.  Also I have just received some propranolol, much used by musicians for stage performance, which is dated as not running out for another two and a half years.  

I have asked David for other people before, but there is no other better protocol: you certainly wouldn't want to start rifampicin at the moment, so just go very gently for now.

Sarah xx

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

18 Dec 2019 01:41 pm

Thank you Sarah.

I'm not meaning to act the dampener...I've just hit such unexpected hardship and questioning all and wondering how to continue. No ones really reported similar effects like mine so my thoughts are in midst of a maze really. 

I have stuck the whole time to daily doxy, roxy, all supplements and activated charcoal and just forsaken the Tini pulses. I did 3 weeks of gap between pulses after every last day of the 5 day pulses.

Not planning on pulsing til beg of January which would have been my pulse nr 12 and then I'll make it 4 weeks tween pulses too.

I was just wondering whether meds might be old and not as effective now seeing that I bought such large quantities earlier in the year to make sure I was covered for at least 1 year of treatment plus some intermittant.

Kiki

boadicea

19 Dec 2019 06:38 pm

Hi Kiki I’m very sorry you are struggling so much.  When I started, nearly 9 years ago, there were more people posting here, some finding it all easier than others, and I spent a lot of time reading through blogs of others who had gone before. I think it’s safe to say that I found tolerating the abx more challenging than most, so I quickly learnt not to compare my progress with anyone else’s.  I had to take things at my own pace.

It took me 8 months to tolerate doxy and roxi, before ever starting to think about pulses.  I then pushed hard and did 3 pulses of tinidazole – 2 pulses of 3 days and 1 of 5 days.  I seemed OK at the time, and I was very determined, but it soon made me very ill, with increased neuro loss of strength, function and cognition.  I was so poorly that I took a break from pulsing, but continued with doxy and roxi, and wasn’t able to take any tinidazole again for about 6 months.

When I started pulses again, I did it at my own pace this time.  Each pulse was 1 tablet taken over 2 days – so, just half a tablet a day.  I found that more tolerable, though still had herx symptoms from it.  I pretty much continued at that pace – I eventually swapped to metronidazole and my pulses tended to be 1 or 2 days only.  I think I occasionally managed 3 days towards the end, but that was very rare.  There were lots of ups and downs along the way – a constant two steps forward and one step back.  And I think it was at least a couple of years before things started to turn a corner.  I continued with abx for over 6 years.

From what you’ve said, it sounds as though you have pushed pulsing far too hard, when you seem to be one who needs to take this slower.  I’ve no idea why some of us find this far more difficult than others, but there are probably lots of reasons.  I know I have huge problems detoxing, plus the infection has triggered secondary porphyria, which also makes me feel rotten.  Some of the things which have helped me along the way with detoxing are: drinking lemon water, Epsom salt baths or footbaths, Nutramedix Burbur and Pinella, Liposomal Glutathione, Alka Selzer Gold (it has to be the US ‘gold’ one, not the UK version).  But too much detoxing too quickly can make you feel worse as well, so that has all been built up very gradually, a little at a time.

I recorded a lot of my journey in my blog: http://cpnhelp.org/blog/boadicea   Perhaps have a look at Sarah’s response to my last blog post here: http://cpnhelp.org/comment/87933#comment-87933 I hope that might help encourage you.

 

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

Kiki

27 Dec 2019 01:36 pm

Thank you Boadicea

I've read your kindly posted reply and advice for me. Yes poss that I pushed things too soon. Just funny how  I did so fine til mid summer really and then things went worse as of pulse 7/8 really. More than anything it was getting physically weaker. And resting up much and doing very little surely didnt help either. No exercise nor much of physical movements.

I wonder whether its more due to me not keeping my muscle memory up by doing more normal daily routines. As my partners home these days ie since September Im doing very little and really moving about far worse too now. Only reaction to Tini pulses later on was feeling the emotional upheave and irritations by day 3 or 4. Otherwise it was easy to pulse.

As my first event of poss MS was 2006 and then 2011 and most recently ( officially diagnosed)2018 with me starting protocol i Jan of 2019 Im fairly newly affected so maybe my Cp n counts has been very large or  very active so that any die off debris affected me more intensely? Im just not sure.

Do you feel that your neuro loss and weaknesses with pulses have remained more with you or did they fade / recover as good as your older more established weakness you had pre protocol pulses?

Thank you so much for reaching out- I did feel a bit alone and drifting with my journey and what with results going backwards to where I thought I was heading really once Id started the protocol.

Kiki💖🙏

26 Dec 2018
Kiki