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

Jan Figtree2019

11 Aug 2020 12:26 pm

I'm very sorry to hear you are feeling more disabled after being on the protocol for so long.  I think a high-degree of stress can definitely make anyone sick.  And you are under an ocean of stress right now.  

I have some thoughts about your situation, but they are not in line with the CPN protocol.  Perhaps we could email privately.  I don't know how to send you a private message.  Maybe Sarah could help me send you a private message.

Cheers,

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

13 Aug 2020 12:37 pm

I got several messages from you on this board, and replied with my home email.  I don't know why private messaging isn't working.  Maybe Sarah can help.  Sarah---it's OK if you give Kiki my home email address.

Thanks,

Jan

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

Sarah

17 Aug 2020 07:56 am

Of course it is Jan: I'll do it straight away!

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

13 Aug 2020 06:26 am

Dear Kiki

reconstruction work can be very very painful and upsetting. In 2015 I had major works done and it was hellish for about a year or more till the last worker left. But I must say when all is done and finished, the space is so much much better.

As I see it Kiki, you were lucky enough to find the protocol and start is soon after your diagnosis. That must be the reason why no new lesions. If no new lesions, then it SHOULD MEAN that the disease has not progressed and you will be better.

You have a lot to carry on your shoulders so the mental stress could be doing you in. Some say some half an hour of some form of relaxation like meditation helps. Relaxes all muscles especially the mind.

Here the corona situation is really bad. Each day that passes with no one ill with it in the family is a blessing. Plus work employment disrupted. Both my sons affected as well as Naresh who is struggling to pay wages to some 20 employees. Thats life. I am also hoping for the day when some light for Sonal who is completely dependent now and needs huge help even to move around the house.

Take care. 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.

Sarah

17 Aug 2020 10:58 am

Hey Kiki, Neena must be right. When I was hospitalized after coronavirus in January, I was sent for an mri and they couldn't understand why there were no new lesions. I didn't particularly want another mri, but at least this one included my spine, which was totally clear. I never knew that! I think that when I turned progressive it was just starting ti creep down my spine so I started treatment just in time............

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

18 Aug 2020 01:41 am

Dear Sarah and Kiki

Just to inform you -- and it may have a bearing on Kiki's woes. Sonal was doing relatively well with some very minor improvements and certainly no additional disability for a whole year from April 2019 when she started the protocol and March/April 2020. Then the cocona happened. Children studying from home, as well as her husband working from home and no travel which was a very good thing for her as she needs help and support all the time.

But increased anxiety because of children's studies and they being unable to go out to play -- stopping of some extra activity like music lessons. And worse Sonal could not get her massage lady and yoga teacher on alternate days as she used to. Disruption of that smooth routine has taken a big toll on her, both mentally and physically. She can no longer use her walker as her right hand has weakened considerably. She cannot even use it to eat.

 

That is why I wonder Sarah and keep wondering whether a change in the abx with a new antibiotic like rifampin added might help. After all although you had a nasty experience with this drug you did bet better and better. Of course in Sonal's case we found David's site after MS had progressed rather rapidly with many lesions in her spine as well. Now with the corona one if fearful of her going in for another MRI which is due.

Sarah forgive me for going on about rifampin! or is it Rifampicin? I keep thinking that it helped Katman and helped you -- you did get better although while you took it you didnt like it.

No word from Lizzie. Did she get her supply of abx I wonder. One saving grace in India is that is not a source of worry at all.

Please excuse the long reply. Take care. Small mercy that my family is so far free of corona!

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

17 Aug 2020 10:26 am

Kiki, there are several things wrong with this site: I can't now see Jan's email so can't pass it on to you. I have asked her to email it to me then I will pass it on to you!

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

18 Aug 2020 11:05 am

Hi Sarah

I did get Jans email from both of you. Jan via pm here in response to my initial one plus yours via email. I sent off a quick reply with my own email adress but no email back so far. All ok  and received by you Jan?

Thank you both for helping and trying.

Kiki

Kiki

18 Aug 2020 11:06 am

Hi Sarah

I did get Jans email from both of you. Jan via pm here in response to my initial one plus yours via email. I sent off a quick reply with my own email adress but no email back so far. All ok  and received by you Jan?

Thank you both for helping and trying.

Kiki

Jan Figtree2019

18 Aug 2020 05:02 pm

I have received an email from Sarah requesting my email address, and I sent her a reply back ---which she did receive.

Kiki--- I have checked all through my Inbox and Junk mail files, I cannot find an email from you.  Try one more time with Cpnhelp in the Subject Line.  If I don't get in a day, I'll send Sarah a couple of more email addresses to forward to you.

We'll get connected.

Cheers,

Jan

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

Kiki

20 Jan 2021 04:20 pm

Hi all!!

So sorry for my absence. Like the rest of the world right now all's gone pete tong and topsy turvy.

My own world has way too many concerns to deal with anyways besides my own illness to overcome. I'm after 1.5 years on fulltime protocol onto intermittant protocol ie maintenance path. I'm tolerating it good and plough on. Tho it must be said that I'm sad to say that I have nothing positive to report. Part reason why I've abstained from writing on here. Not wanting to drag yous down and fill you with my negatives. Because maybe there's folks on here recovering so rather inspirer you.

I'm worse than I've ever been before. Daily and weekly I become more disabled. I started with a foot drop and now I no longer drive, go outside house bar hairdressers 3 times a year, can't use left hand/fingers or arm properly, constantly loose balance, fall a lot and unable to get myself up on own, drag my left leg and foot like Nostradamus as I'm too unable picking leg up for a normal gait, have to use 1 crutch when walking and generally feel a wheelchair will shortly be my life forward. I'm left super depressed, incapable and worse in movements than my 91 year old father in law.

Did I do right believing in this cure? Did I get the right meds sent to me? Is this the way for me? Or should I just admit defeat and accept that I'm disabled and that it'll only go one way from here on...

Like I said- these are my reasons for my hiatus and non cummunications tho sought by you lovely lots!

I started protocol in Jan 2019 with a foot drop. 2 years later and I'm a shadow of my former self on all levels. Not an ounce of improvements. Just a worsening sadly. 

My chrystal ball has gone as dim as my belief.

Kiki

MacKintosh

21 Jan 2021 02:42 am

Hi, Kiki - Since it's middle of the night and I'm bleary-eyed, can I just ask if I'm reading this right? You did the full protocol, but are doing intermittent, in other words going off the antibiotics, despite having no improvement?
I promise, I'll come back during the day and re-read your earlier posts, but I'm fried right now. I'm afraid I'm missing important info here, so I'm going to head to bed and return in the morning. xoxo

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Jan Figtree2019

23 Jan 2021 07:59 pm

I just logged in today and saw your update and news about David's death.

I'm really sorry you're experiencing no improvement.  I hope Sarah and others can continue to help you.

We've had several deaths in my family in the last month---my father-in-law (not Covid) and my brother-in-law's brother (Covid).  Shocks all around with waves of grief and problems for family members who are not cared for.

I am sending you HOPE.... and HUGS!

Cheers,

Jan

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

neenavyas

24 Jan 2021 04:14 am

Kiki Kiki

I have been thinking about you a lot and posted several messages on this forum to you. Listen, 2020 was bad for Sonal too. Her walking what it was got mucvh worse. Her right hand has become almost useless. She cant eat with it or use it much. Covid with lack of yoga teacher and massage woman plus children all the time home has taken a toll. But she continues to be on full protocol. I am thinking some people need to be at least6 twop years on full protocol before improvements.

Maybe if you get an MRI that will show the real picture. Must be very very hard on you. Who is taking care of your daughter with you worse off? Terrible situation to be in but maybe just maybe 2021 will be kinder to all of us. Chris too is struggling completely on his own. My son is a devoted husband to Sonal and takes care of her completely, plus the children and his own work. Life can be very tough indeed. I often think that there MUST be some miracle plant somewhere growing in the wild which would cure MS.

By the way with Sarah's huge loss I dont dare post one interesting bit of research I cam across. A sort of vaccine by Pfizer by the same couple who did the Covid thing remylenation in mice after a sort of vaccine/ injection. NO huam tirlas as yet. Will post it soo. Look out. You are in the UK and easier to find out more. I also contacted Pfizer to say I am interested ijn knowing more but they havent got back as yet.

Try keep your chin up. Look life is really challenging for many. I still keep wondering whether Rifampicin will help patients like you and Sonal as it did Katman and Sarah. Do write if you can. My email is neenavyas@yahoo.com. Would love to keep in touch. Are you in touch with Liz?

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

24 Jan 2021 11:49 am

Neena, if Sonal wants to try rifampicin, let her, but let me say that it didn't help me. I had already had my major improvements before I started it and rifampicin mucked up my balance more than a bit.

David was worried about keeping me on the same abx for too long, because these were comparatively early days so I changed to rifampicin.  I wish I hadn't.

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.

Sarah

23 Jan 2021 04:55 pm

Kiki, people might think it a bit strange that you are changing to intermittent whilst still getting worse, it is a fact that not everyone benefits from CAP treatment.

Maybe you just need more time or maybe it is not the right treatment for you but what I am certain of is that MS is not an autoimmune disease.  Why else would I have recovered so quickly from progressive disease by just taking a few antibiotics?

As I suggested earlier, very high dose biotin might be the way forward. Dewloped in France a few years ago, I have a couple of blogs about it on this site.

A few years ago people were wither buying caps of biotin or buying the loose powder  and encapsulating it.  However, pure biotin is so fine that it could easily be scooped over your food or made into smoothies, your choice.

Just make sure that it is pure biotin and not mixed with any other vitamins or supplements, to avoid taking too uch of any of these.

Sarah x

 

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.

toliveagain

25 Jan 2021 06:11 pm

Hi Kiki,

I am so sorry to hear you are not feeling better. A year and a half is a long time, but maybe you need more time on the protocol. After all, what do you have to lose?

That is the mantra I chant to myself when I don't see improvements and want to quit. I have wanted to quit many times. My symptoms got much worse on the protocol and I got very depressed, thinking the protocol was not working for me and my MS was progressing. I have to say that until a couple of weeks ago, I was getting worse and worse and worse. Then I had a break though week where I felt much improved. Since then I have digressed again, but I am convinced that the symptoms I have had while on the protocol (symptoms that were much worse than before I started the protocol)... were die off!! Maybe your worsening symptoms are die off too and underneath you ARE getting better?

Kiki, I am not a doctor. I do not know your circumstances. Maybe you have a high bacterial load and it is just going to take longer. What do you have to lose in keeping going? Maybe go back to antibiotics full time for another couple of months. Maybe your corner is right in front of you. I have to admit, I got so much worse, just before I started to get better. Maybe the fact that you are much worse right now, is because you are almost at your corner.

Also, reaarding NAC. I have learned that I can control my die off reactions a bit with how much NAC I take. For me, I used to take 1800-2400mg/d. I missed a few days by chance and felt a bit better. This may not be true of others, but when I am feeling overwhelmed with symptoms and feeling like my MS is getting worse, I back off on my NAC, and even took NAC holidays. And then I feel a bit better again. It has given me a small element of control and also helped my to believe my worsening symptoms are not worsening MS but rather die off, because I can control it. Don't quote me but one of the other protocols (Stratton or Vanderbuilt or someone else - can't remember), but someone says not to take NAC until after you have treated with the antibiotics for a year or two. I think there is a 'patient story' on this site of someone who says they made their die off reactions manageable by adjusting their NAC dose. I have adjusted my NAC to one 600mg/d and occasionally skip a day. That's all. Every now and then I try more, 1200mg, but when I take 1200 I feel really sick and brain fog and lose my balanceget porphyria-like skin reactions. Maybe try going back to antibiotics full time and back down on the NAC and see how you feel? But I am not a doctor. Whatever you decide is up to you and your doctor.

I hate to see you back off the protocol when you might be very close. Really, my worst month for symptoms was the month just before my breakthrough week. That doesn't mean it will be the  and same for you, but what do you have to lose in continuing antibiotics full time for a little longer? I am sure that whatever you and your doctor decide, will be the best for you. Just know that we are all here with you and supporting you. Sending you love and strength and good vibes.

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.

Kiki

31 Jan 2021 06:08 am

Me too Toliveagain!!!

Seeing as I started with a footdrop that was annoying tho manageable in Oct 2018 and protocol start Jan 2019 it's rather worrying and depressing seeing how bad I am now. Even my surroundings are suggesting the need for wheelchair. 3 years ago I did kickboxing 3 times a week. Then I had an accident and needed reconstructive knee surgery. Whilst recovering pretty good according to surgeon I found myself with a footdrop. I found the protocol and embarked super convinced this way was the right direction to go. 

2 years later and Im as disabled as possible. I can't chop nor cook, butter a toast nor carry anything in my left hand, my left arm is useless, my left leg gets dragged whilst I use a crutch to get myself anywhere in the house. In past I only used the crutch for outdoors. My balance is shocking and I fall over I lot. I struggle to instruct my left leg to bend at will and sometimes I need help just to get out of bed as my body is unwilling to even try. 

I now wish Id never attempted a cure as possibly Id be nowhere as bad and Im now not able to be a mum for my kids. I feel totally in despair and can see the kids lives being better without me. My partner had to retire to run the house and he's now also become my full time carer. Life is the worse its ever been for us all and I dont even tell my mum that most likely my plans misfired and I'll probably never make it home again. She lives in another country and due to covid we've not seen each other for near 1,5 years. Before that I was able to go home every year on my own with the kids as my partner had to work. If my mum saw me it'd break her heart. My heart is broken. 

I have continued with protocol but Im wondering what the point is now besides money spent. I have no support nor encouraging Doctor behind me for this protocol. I've soon realised you are a write off case once they give you a MS diagnosis.

When is a die off results showing improvement happening and when is a symptom plain progression of MS anyways?

Kiki

Sarah

2 Feb 2021 07:30 am

Kiki, one thing I must ask is why you thought it was the right time to go on intermittent protocol when it appears you had not yet stopped getting worse.

I know that I started intermittent after just over a year but that was only because I was fully ready to.  I get worried that people read that I started on intermittent after a year and so think that this is the way to go, but people are all different and have vastly different bacterial loads.

My load was quite small, 1:64 but all the damage was in my head rather than in my lungs.

If you went back on to full time for say another six months plus high dose biotin you might find all the difference.  Ì can't  guarantee this but to my mind it is certainly worth a try.

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

2 Feb 2021 09:40 am

After 1,5 + years of constant abx and pulses it no longer had an effect on me. Every day was the same. I saw no improvements nor glimmer/ moments of hope throughout bar an initial bit of head clearing. Physically I'd gone worse within the first 6months of having started protocol. But nothing improved. Gradually with less activity my body simply forgot how to do things as before. As I saw no changes I thought to at least try the intermittant stage before quitting all. 

I've upped the biotin now. I've never had any knowledge of poss bacterial load. All I know is I look a lost cause to many and Im doubting I can go back to life as before.

Kiki

boadicea

2 Feb 2021 11:55 am

Kiki - I am so sorry you are feeling like this. I was very lucky, as, when I started out here, there were far more people sharing their experiences and many others, who had gone before, who did not have an easy time with the treatment. My symptoms and level of debility did continue to deteriorate when I started treatment and continued to do so for some time. From memory, things did not start to very gradually turn a corner until nearly 3 years of treatment. I know we all have to make our own judgements about these things, but I worked in the basis that I had nothing at all to lose by continuing with treatment. It was my best hope, so I stayed determined to stick with it and have never regretted that..

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

Kiki

3 Feb 2021 03:52 am

Hi Boadicea

I'd love to feel just how you feeling and coming out of this endless tunnel better than ever expected! Would you mind terribly either here , inboxing me or emailing me somewhat of your journey? Ie your starting point of disability, period of worsening and or improvements whilst on protocol and so the effects on your physical/ mental state, when you felt/saw the turning of corner and what those improvements ended up being? Did you do physio daily to keep muscle memory and strength? When did you understand intermittant way to be the right timinng and how are you now compared to where you were before the MS diagnosis?

It'd help me intensely and provide a torch in the dark that this path may very well be the only one available for me!

Sincerly in hope.

Kiki

neenavyas

11 Feb 2021 01:49 am

Dear Boadicea

I would ask you to share in detail your jorney as Sonal has also deteriorated since she started the protocol after having stabilised for about a year. The year 2020 has been bad for her with worsening disability and covid worries on top. Children studying at home their examinations and so on. Her yoga teacher stopped coming as well as the massage woman and her condition worsened considerably.

I noticed you said it took you about three years or more to start seeing definite improvements. If you do not mind it I would love for you to share in some detail your disability when you started, how much worse it got and how much better it is now. My email is neenavyas@yahoo.com. If you feel up to it, do write to me.

Kiki has a big problem as she also has to take care of her disabled daughter. I think of her almost daily.

Keep well  and 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.

toliveagain

12 Feb 2021 09:16 pm

Hi Kiki,

I might be the only other person right now who is smack in the middle of the protocol. I am 9.5 months. I can give a quick rundown of my experience so far and maybe it will help?

I started hot and heavy only taking NAC for about 2 weeks, then Doxy 200mg/d for a week, then doubling the Doxy to 400mg/d and a week later adding Roxi 300mg/d and started my first Flagyl pulse around week 6. Went into Porphyria with skin lesions and skin peeling, cramps, dark urine, etc. Stopped abx for a week and started back up again a little slower.

Most of the time I take Roxi 300/d, Doxy 200/d (occasional drop to 100/d if porphyria is bad) and about 20 supplements. I can provide a list if you like. I have completed 8 Flagyl pulses in 9.5 months. But ever since that first pulse where I took Flagyl 800mg/d for 5 days, I have found Flagyl difficult to tolerate. Pulse #2 was 400mg for 4 days with horrible reactions. So pulse #3 I backed down to one 400mg pill. In each pulse since then I have been trying to increase the flagyl. My last pulse, was 400mg/d X 5 days, still with reactions that I can barely tolerate. I have found 200mg flagyl pills so I take 200mg twice a day.

For the first 8 months, my symptoms seemed to get worse and worse each day. I was convinced the abx were not working and my MS was progressing very fast. I could not tell if what I was experiencing was worsening MS or die off. I posted a couple of times here asking. I was a train wreck physically, cognitively and emotionally. I would try to read past posts and patient stories here on this site to figure it out, but with my brain fog, I couldn't understand what I was reading. The only thing that kept me going was - what choice did I have. Every time I would be convinced the abx were not working and my worsening symptoms were MS, I would cry for a day and then think, Oh well, might as well take the next abx, what choice do I have.

Then there was one around mid month #6 where I woke up feeling like a 20 yr old. My brain clicked like a mathematician's. My fingers hummed on my computer key board. It lasted about 5 hours and I got more done in those 5 hours than I had accomplished in the entire previous 6 months. I felt like I wanted to run. I went outside and jogged around the block. It's a small block, but it was the first time I had ran in years. I got onto the CPNHelp site and read about die off and finally, with less brain fog, I was finally able to understand the significance of moppers. I read other people's stories in the 'patient stories' section and noticed many of their symptoms where much like mine. I was convinced all the symptoms I had been experiencing was die off and the abx were working. Then the 5 hours faded and I went back to near invalid status. But now I had the inspiration to keep going.

From month 6 to month 8, it felt like I was going down hill again. I felt my symptoms were getting worse. each day. Then in month 8 I had another breakthrough. I woke up day feeling great, clear, walking smoothly, balance was good and didn't fall into walls, no cramps or fasiculations, hand tremors gone, acne cleared... if I listed all the symptoms I have, we would be here all day. The only thing that did not seem to improve was my memory. But it was the first time since those 5 hours in month 6 that I saw any improvement at all. I posted here that I had turned a corner.

Sadly those improvements only lasted about 5 days, then back into decline. But since then, in the last month and a half, I get these little windows (half a day here, a couple of hours there) where I feel my symptoms are slightly improved. And I am starting to notice a pattern emerge where my symptoms are worse the week after a pulse, and better mid month. I think that is how the symptoms are for most other people and it has taken me 8-9 months to get to the point where I think other people start.

I also notice that when I have symptoms somewhere, like my left shoulder aches for a few days, then a few days later, I notice I have a little more strength in my left arm. And if my feet throb for a couple of weeks, then as the throbbing diminishes I realize I have a bit more sensation in my feet. They are not totally back. I've had this feet burning happen 3 times so far, but each time they get better than the last. So I am beginning to rejoice in the painful symptoms as I see it as improvements. Last week I had a killer headache for a couple of days. Painful, but sure enough, I think I am thinking a little clearer this week.

And I am just now, as I approach month 10, starting to see that the good times are getting longer and more frequent. And the bad times are not quite as bad as they have been; close, but each time a bad symptom comes back, its not quite as bad as month 5-6-7, which were utter hell!!!

I still can't say if the abx are working because I am definitely still worse than before I started on abx. So if you look at it that way, one could say the abx have made me worse. But because I have those breakthrough periods I am also convinced I am getting better with the abx. My gut feeling is, if I improve at the same rate I have declined since on abx, I will be where I was when I started abx in about 4 months. And then if I improve from there for the next 4-6 months. And I am hoping I will be closer to what I want to be as my normal in ~2 years on full abx. Then I intend to take full dose abx for another 6 months, and maybe try taking flagyl for a whole month and/or adding another abx. Then around the 2.5-3 year mark, possibly going to intermittent, and do intermittent for at least a few years. I think I am going to be one of the 5-7 year people. That's my projected time line.

I do have to say that I am still a little 'hot & heavy' even though my flagyl pulses are under recommendations. I have added a couple of supplements to my regime that have been proven or are suspected of having anti-chlamydial properties like Clemastine, Urosolic acid, Himbacine, Butyrate, Coconut. So I suspect I may have had heavier than normal die off reactions than most and I am hoping that my future improvements might be faster because maybe I killed a big portion of the CPN up front. That's maybe why I am starting to see breakthroughs before the one year, because I have killed so much and been so debilitated these last 9 months?? But maybe that's wishful thinking.

So Kiki, I am not sure if this helps. Do you see any similarities to what you are experiencing? I hope this helps. I still say, maybe keep going? what do you have to lose.

Wishing you and anyone else who is on the protocol well. I look forward to the day we toast a glass of wine to our good health.

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.

Sarah

2 Feb 2021 10:47 am

Kiki, to be diagnosed as having MS, and especially progressive MS, is for many people classed as one of the worst of diseases and in 2003 I must say that I agreed: I first developed MS in my mid twenties, about fifteen years previously but the disease then was very benign: a bit of footdrop and my right hand giving out on me twice but only lasting about a month each time

By 2003 though, I had taken a definite turn for the worse though and so a diagnosis was sought: by this time it was rapidly advancing secondary progressive MS and I wss distraught, having overheard the neurologist saying to David that my painting days were over.. 

A few furious days of research by David and he had found the Vanderbilt work on chlamydia pneumoniae. That evening he brought me back my first packet of doyxycline.

Kiki, I was one of the lucky ones because I felt something improving very quickly. Other people can take rather longer and some like you and Boadicea even carry on getting worse for a while. This can be more than disheartening.

I wish the site was as busy as in the early days when you really did need to read all the latest posts every day to keep up to date.  But what I wish above all for you is that you could go back onto the full time protocol for maybe six months longer, keeping up the high dose biotin, now that you know you can just spoon itcon your food, then see what happens.  I think you will be pleasantly surprised  because going on to intermittent before you were ready to must be a lot of your  trouble.

Do think about 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.

Sarah

3 Feb 2021 05:31 am

Of course, we must bear in mind Katman, in all this, real name Rica, who I have spoken to twice on the phone. The first time was early in her treatment when her voice was small and weak.  But then came the big change, the second time was a few years ago, but what a difference! I could fully see this goat farmer from North Carolina climbing up onto the roof of her barn when about seventy to do a bit of repair work!

Oh, and as well as the dairy goats, she is a professional violinist........

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

20 Feb 2021 09:52 am

Well in last attempt to see improvements i have decided to revert back to a full time abx protocol this month after 6 months+ on intermittant. I've also doubled the biotin dose. I'm hoping by summer time something positive will occur.

Kiki

Sarah

21 Feb 2021 07:04 am

Kiki, let's hope that something does: I feel sure that it will!

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.

26 Dec 2018
Kiki