MediTest
Submitted by Jan Figtree2019 on Wed, 2019-06-12 12:59

4th Pulse Completed

Duration:  9 days   I did nine days because I felt pretty good after five days.  My strategy for all pulses is to try and get to five days, and then play it by ear --lengthening the pulse day-by-day depending on side-effects.  I also stopped at nine days to give my mind-body a break, give my liver a break….my mood and energy improve after stopping a pulse.

Side-effects:  Mood seems to take a dive after about three days… I’m a bit blue.  Energy levels also begin to be affected after about three days.  I’ve found it useful to increase all B-vitamins, especially Riboflavin (B-2), Methylfolate (B-9) and Methylcobalamin (B-12).  I take naps and/or allow myself to sleep longer in the morning.

Body Changes:  Pain is gone.  During this pulse, I had only a couple of short (seconds) of pain in my lower back/deep buttocks/sciatic track.  I have no pain turning in bed. Stiffness/soreness is still there but I only feel it in the morning when I get up… it usually dissipates in about an hour after moving around.  

Adjunct Therapies:  I continue to work on getting rid of harmful biofilms (N-A-C is great for this).  I also use Chickweed infusions to help soften and detach the biofilm.

The biofilms hide a lot of nasty stuff, but my goal is eliminate as many Persister cells of C. pneumoniae (and other bad bacteria) that are hiding in it.  I am not confident I will ever get all of the Persister cells, but I want to diminish the level as much as possible.

I continue to take plain yogurt and a handful of probiotics each evening to rebuild (really to just keep some good bacteria moving through my gut while I’m doing C.A.P.).  

I continue to protect my liver with Milk Thistle extract, Burdock extract, TUDCA.  

Sarah--thanks so much for this site.  I continue to get a lot support by reading everyone's progress.

Cheers.

Blog comments

Nine days Jan!

That's a marathon and you are a star? Better take it easy now and tell us after a few days how you feel. 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.

I appreciate your good thoughts.  I will definitely update everyone in a couple of more days.  

Cheers.

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

Well done Jan: I could never do more than five days, even after I swapped metronidazole for tinidazole. I tended always to start a pulse on the Monday, which maybe was why. By Friday, I was just ready for a nice glass of Tavel or Cahors!

You are lucky that your mood took three days to take a nose-dive: mine took about an hour!  This was probably the main reason for me keeping the pulses to five days.  Of course there were two people doing pulses at the same time.  Once David carried on for longer but after ten days I had to make him stop, because I couldn't stand it!

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.

It is interesting that you and David both had negative effects on your moods while on the Metro/Tini.   I am heartened by this... because it reaffirms that it is the AB and not just me...

In the last pulse, I noticed a subtle dipping of my mood for the first 3-5 days and then it just went into a dive.   I persevered this last time out of curiosity... my mood immediately improved in the first 24-hours after stopping the Tinidazole. 

My husband is brilliant at keeping my spirits up when I'm in this negative place ....

Cheers.

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

Dear Everyone,

If I've had no bad effects from pulsing, does this mean they're not working? I've done 4 or 5 pulses so far with no problems or any indications at all. 

The  MS symptoms that are more or less gone are bad balance, various pains, useless memory and brain power. They seemed to get better simply with Doxycycline.  The Big Bad symptom is walking and that is stubbornly useless, though there was a false improvement, quickly reversed. 

I thought I'd start another pulse next week, and just do it for two weeks. 

Any thoughts?

thanks, Lizzie

Elizabeth Anne

D W

Dear Lizzie,
It’s possible that the severity of symptoms of bacterial die-off is related to the total body load. I have seen persons with MS improve without much in the way of adverse symptoms: presumably their infection was largely confined to the CNS.

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

Lizzie, if your MS is now SPMS then you would not be improving.

Your improvements are following the same course as mine and my walking is still far from perfect, but to me and I am sure to you, the mind is more important.

The recent improvement with my legs came after having used high dose biotin for several years.

The only time I had what I had assumed was die-off was after the third pulse, but since the pain in my right arm started the day before, it might have been coincidence. In fact, I had experienced the occasional tweak for a week or so before that. 

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.

Lizzie, That was no 'false improvement'. That was a brief glimmer of what your body is capable of. It'll come again, then more often, then become more your 'normal' than not. Be patient.

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

dear Sarah

I have started the CAP three days ago -- 25 June 2019 -- with 200 gm Doxy plus NAC 600 mg twice a day plus probiotics. So far so good. No stomach upset.

As I mentioned earlier stuffy nose, mucous drip and cough since I was 15, arthritis since 42 years more recently clogged arteries. Hope this works for me. For 60 years I have had bad coughing through the day and nights.

Do you think I should start Roxy  300 mg too? I must tell you that for last three years I have also taken 100 mg of Nitrofurantoin every night before bedtime as a prophylactic against UTI on account of which I suffered very badly and continuously for almost 18 months in 2015-16. A nephrologist recommended this prophylactic dose and since then ok on UTI front.

Sorry to burden you with all this. Bestest

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.

Fab Neena!!

Glad to see news of another brave soul leaping!!! Listen to Sarah for sure. I just wanted to say that I took Doxy first for a week on own before getting the Roxy onboard too. Mainly as I didn't know how Id react and also as I wanted my partner to be home when I did the combo just in case he needed looking after the kids if I reacted badly. As it was, Roxy was a breeze and I could have taken both in one go as of day 1 but I played it safe and Im still happy I gently eased myself into the protocol.

Kiki💖

Neena, I'm very glad to hear that you have taken the plunge and don't see any reason why you shouldn't start roxithromycin as soon as you wish. The only reason why I didn't start mine at the same time was because we were waiting for it to come from France, it not being licenced at the time in this country. As Kiki says, Roxi is a breeze compared to other abx. I think the three days is long enough to know that you are not going to react badly to anything.

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

dear Sarah and all

started Roxy 300 mg along with 200 Doxy in the morning together after a biscuit with cheese and cuppa tea. So far so good. Feel just a bit queasy nothing serious. Also taking NAC twice a day and a few vitamins, not the whole stuff.

how are you Lizzie Kiki Jan and all? Sonal priming for her first pulse in a week.

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.

Hi Neena, 

How are you getting on now? I've been away for a few days; back now! Good luck to Sonal. I've had no reactions from any of the pulses, I've been lucky. Like you, there's a bit of queasiness. I think that might be Biotin that's doing that, though. I've had a few little periods where my walking is really good (for 10 mins). It's only happened about 4 times, but it has happened.

You know what, it's funny: it's only right now as I write this that I realise, yes, it's happened a few times now. Wow. 
I won't let myself get carried away this time though. 

Bye for now!

xx

Elizabeth Anne

Dear Dear Lizzie

a big WOW to you. One time and then four times! If I had been with you I would have said open a bottle of champaigne!

You know it is too early Sonal hasnt even done one pulse just about to finish three months of DOXI ROXY. But the other day wrote something and her husband, my son, said just that one time her writing better than it had been for some time! Her hand also affected besides walking so she is not so active on the site finds it difficult to key in.

How can you say you did nt notice it had happened several times! Please dont forget sch things such a source of encouragement to others still waiting for the miracle cure to happen.

When are you moving to Spain, if at 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.

Dear Dear Lizzie

a big WOW to you. One time and then four times! If I had been with you I would have said open a bottle of champaigne!

You know it is too early Sonal hasnt even done one pulse just about to finish three months of DOXI ROXY. But the other day wrote something and her husband, my son, said just that one time her writing better than it had been for some time! Her hand also affected besides walking so she is not so active on the site finds it difficult to key in.

How can you say you did nt notice it had happened several times! Please dont forget sch things such a source of encouragement to others still waiting for the miracle cure to happen.

When are you moving to Spain, if at 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.

Dear Dear Lizzie

a big WOW to you. One time and then four times! If I had been with you I would have said open a bottle of champaigne!

You know it is too early Sonal hasnt even done one pulse just about to finish three months of DOXI ROXY. But the other day wrote something and her husband, my son, said just that one time her writing better than it had been for some time! Her hand also affected besides walking so she is not so active on the site finds it difficult to key in.

How can you say you did nt notice it had happened several times! Please dont forget sch things such a source of encouragement to others still waiting for the miracle cure to happen.

When are you moving to Spain, if at 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.

Hi Neena,

Yes... only for a few minutes here and there, but it has happened definitely. Golly! I hope this is the start of something bigger, but I am not pinning my hopes on it. You know, I'm walking along on a dead flat surface, then I notice - Hey! No limping! Then it passes - I get to where I am going, and I forget.

I'm taking lots of Biotin which makes me queasy every time, but I don't care. If I've escaped the worst that Metro can throw at me, I'm lucky. Though actually, I was thinking about this this morning: I've been getting bad cramp in my feet and calves. Perhaps that is a symptom?

We're going to be moving to Spain at the end of September / beginning of October. Ironically, I'm really busy and productive at work, so need to take this with me. I've found an office in the nearest village to our apartment. 
Sarah, you said you can ride a bike? I'm going to try this in a week or two. In Spain I plan to buy a scooter to go to work - 3-wheeler - if my balance is good. I'll test the bike here first.

Adios, amigos!
Lizzie xx

 

Elizabeth Anne

Take care Lizzie, I tried my bike years ago but rode straight into a hedge. Sometimes I am too optimistic.. I want to get a three wheeler with big wheels and gears but this house isn't really suitable for storage. One day!! I get plenty of exercise from my ellipse though.

Have a good time in Spain Lizzie:  a year full of new starts for you! 

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

Hi Sarah, Spain's a few months away still. Looking forward to it!
 I'll try a rental bike and see how it goes before I try the three-wheeler. I meant a motorised one, a petrol motor, but perhaps the mobility ones? The hills are so steep though, I can't see an electric motor making it. Problems...

 

Elizabeth Anne

Ah, I was thinking of a full set of gears, since I used to to race up and down big hills both here and in France!

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, Kiki and all

thanks for your good wishes. So far no reaction at all. I plan to start Roxy in another few days -- a week after Doxy, I am already taking 100mg Niftran every night as prophylactic for UTI.

Will let you know soon what Roxy does to me or not.

Neena

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

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

Hey Lizzie! 

Thanks for sharing your progress... a couple of thoughts about nausea and cramping.... Could be low electrolytes (especially if you've been in hot climates)... 

I take supplementary electrolytes everyday (Emergen-C ElectroMix Electrolyte Replacement) --one or two packets a day.

 

Cheers,

Jan

 

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

Thanks, Jan. I'll look at that.

And does anyone know of a good supplement for swollen feet and ankles? Not me, a friend. Been going on for months. I read somewhere that magnesium's good, but no effect so far...

Elizabeth Anne