Submitted by toliveagain on Sat, 2020-06-20 06:23

Hi All,

I am new to the site and new to CPN and abx protocols. I see the last blog post was 2 years ago. Not sure if anyone is here.

I started abx two months ago and having a bit of a tough time. I may be going too fast. Looking for some advice.

If someone is here, (the clock at the bottom says only 1 user online - me), please reply and I will explain further. Hope I hear from someone.

Smiles,

Toliveagain

 

Blog comments

Hi, TLA,

Please stay with it.  I hope I am not too late responding to you and that you are still with us.   This is definitely not easy at the beginning (which probably lasts six months to a year), then gets easier and you begin to feel the wonderful results.

I am going to be 80 soon(!), and feel like 50 or less.  stay with it, I say again and again.  and post about how ever you feel.  Complain or cheer - we will understand because we have been there.

Rica

 

 

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Dear dear Rica

So good to hear from you responding to another protocoller! If you remember Sonal, my daughter-in-law, even after a full year of the protocol and 13 pulses with Metro, she isnt doing too well. No better mobility. Recently and only recently worse plasticity that prevents her from using the walker -- her legs are too stiff.

I have been toying with the idea of her starting Rifampicin along with Doxy. I mentioned this to Sarah. With Rifamipic plus Doxy you did nt do a pulse, right? and what was the Rifampicin dosage? what after effects, if any. You wrote on your blog that you were hungry all the time!. After how long into the protocol did improvements start?

Sorry for firing all these questions at you. Take care. You are such an inspiration.

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 Rica,

Thank you for replying. I was feeling alone. I was having some hefty reactions without much support, and not seeing much action on the blogs. So I appreciate the connection.

The rest of this post is for anyone to comment...

I am following the Wheldon protocol for MS on my own with a local GP doctor pitching in. But I am/was pushing the protocol faster than described.

I had been doing most of the supplements (except for NAC) for a few months prior to finding the Wheldon protocol. Then I started with 2 wks Doxy 100mg/bid, then 1.5 wks Doxy+Roxi 300qd while increasing Doxy to 200mg/bid. Then started my first flagyl pulse for 4.5 days, only 3.5 weeks after initiating the protocol.

Even before flagyl, as I increased the Doxy (around week 3), in addition to feeling like crap for 3-4 hours after meds, insomnia and other symptoms, I got painful pink lesions on my hands. I thought it was photosensitivity from Doxy so stayed out of the sun, aloe vera and increased fluids.  

After 4.5 days of flagyl (just over 4 weeks into protocol), the lesions on my hands were horrible, I was feeling like crap all day, and getting a red rash on my face (possibly a lupus butterfly shaped), and dark urine no matter how much water I drank, etc. I realized it was pseudoporphyria. I increased fluids more, ate sugar, and took Cimetidine (read it helps porphyria - then a few days later read Cimetidine amplifies Chlamydia so stopped) and most of all, I stopped flagyl and went back to Doxy 100mg/bid+Roxi.

After 3 more weeks on Doxy/Roxi (around week 7) the rashes subsided for the most part, other s/s diminished, feeling a little bit better so I decided to do a second flagyl pulse and made it 6.5 days before I felt so bad I had to quit. Back to Doxy 100 bid+Roxi 300 for about 10 days (total at this point of 9.5 - 10 weeks). Then for reasons listed below, I decided to go off abx. I have been off for 4 days now.

Most of the other supplements I was taking are the same as listed in the Wheldon protocol for the most part. Although I was not able to obtain NAC until about 3 weeks into the abx, so started about a week after I started Roxi, just about the time I was increasing Doxy and just before my first flagyl pulse (around week 3). I was doing NAC 1800-2400/d and my doctor added a few other things not on the Wheldon protocol like Proctase-P (an anti-inflammatory gastric enzyme) bc she said it would enhance the abx. So looking back, there was significant reasons for the porphyria... like a 4 fold hit in just a few days.

The toxic reaction with the second flagyl pulse was PROFOUND. And my brain fog was so "thick" I didn't appreciate the reason for the way I was feeling. My s/s were deteriorating so fast that I could not tell if it was a toxic die off reaction, a super strong Herxheimer, or maybe the abx were doing nothing at all and my MS was advancing so fast that I would need inpatient care soon. I could not tell.

For awhile my walking became worse than any MS s/s I had experienced prior to treatment - robot like and extreme difficulty on stairs. My balance was so off I often wavered if I had to standup or turn (even slowly). My loss of memory so bad I could not remember if I had taken pills 30 mins prior or brushed my teeth. I had to write everything down or set up ques. Like I said, worse MS symptoms than I ever had experienced prior to treatment.

I decided I needed to take a break and figured if the s/s cleared some, that would prove it was a toxic rx and not MS worsening. So I stopped everything except vitamins, and things like Omegas. Its been 4 days off and I think I am getting a little better. I have had these weird moments of "significant" improvement, like flashes but they do not seem to stick around for long. Occasionally flashes of memories, someone's name that I had forgotten last week, or a sentence in a language I used to speak but have since forgotten. I am dreaming again, 3 nights in a row (have not drempt in years). My tonsils are the smallest I have ever seen. I am having short periods (15-30 mins) where I have some balance and walk smooth/normal. I did a short hike on a hilly trail, stumbled a few times but did it. I feel like I can hold a conversation without significant word search or having to concentrate so intently to figure out what the other person is saying. I have had a few conversations that just flowed. I "occasionally" can remember if I took my pills.

So as of tonight, I have decided the abx/protocol was indeed working and I have decided to start back up in 2 more days. Now I just have to decide... should I start back up slower so as to not have such a strong toxic die off release, verses, I am almost 60 and don't have much time, and maybe I should just suck it up and be "sick" for 6 months and try to get over this as fast as I can. ADVICE???

BTW, I also started taking charcoal at 2am back when I was on abx and noted a tiny bit less toxic rx. 

Thank you. I look forward to your comments.

ToLiveAgain!!!

Recently started the Wheldon protocol and looking forward to connections as we work our way through

We used to tell newbies on the protocol that going too fast at the beginning could be detrimental. Maybe we've been lax. (Of course, I had no idea how you'd proceeded on the protocol until just now.)

You do yourself no favor by pushing too hard at the beginning. You have to allow your body to recover and to replace the cells you're clearing bacteria out of. The problem with toxicity is it builds up and before you know you've gone too far, you've actually gone too far.

The idea isn't to harm the patient in the process. As a matter of fact, that's why Dr Wheldon modified the protocol... so you could have a relatively easy time as you proceed through the treatment.

Slow the heck down. You'll be glad you did. I'd also suggest shorter pulses at first. You work UP TO a full five day pulse. You don't START with it. Find out what your body will tolerate, rather than pushing it too far.

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

Thank you. I know that now. I have always been a super strong person. And in the beginning, the first few weeks, I could see some of the die off effects so I knew it was working, but I found it quite easy to tolerate so stepped it up. Each time I started something or increased a dose, it felt like the right thing to do at the time, like I could handle it. Then it caught up to me and with the resulting brain fog... yep, I got caught up in a depressive, toxic, whirlwind for a few days and realized I was going too fast. Hence the break and "start over". I have been off for 5 days now and feeling great (except for MS s/s). Will start again today and go slower this time. Thank you

This was a good lesson to learn and I am grateful it happened this way because now I know my physical limits and  have a better idea of what the s/s of toxicity are for me, and when I can push (a little) and when I need to back off.

Recently started the Wheldon protocol and looking forward to connections as we work our way through

Toilveagain, since you stopped and are now restarting you MUST follow David's protocol and not start the third antibiotic until you have been taking the first two for three months.

I did this and then found I was able to take the pulsing antibiotic for nearly five full days straight off. You really will find it much easier if you do this. David actually developed the idea of pulsing in order to break people in to the C pn protocol easily. Time and time again, after waiting three months and then finding I was able to progress easily, I see people rushing in to it and few people can. Best forget your age and do as you are told by a top class bacteriologist..

By the way, I have just noticed this so I will tell you first. It is now seventeen years since I finished the protocol but all this time my entire right arm was nore pink in tone than the rest of.my body. I'm not sure why but it was the most affected limb: although I have always been able to walk in a kind of weird way, my right arm was nearly paralysed when I received my diagnosis. It took months of treatment before it started working fully.. Today though, both my arms are spot on the same colour and texture. I thought I was going to be two-tone for the rest of my life...

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.

Thank you Sarah,

I really appreciate your response. To tell the truth I have not found many posts of people that have had success with the treatment. Plenty of people who say, "I am getting better" but not may who made it to the end, are now off abx and MS free. When I was in the throws of the toxic reactions, with the resulting depression and brain fog and generally feeling horrible, I wondered if it is all worth it. I wondered if there were people who found solid, lasting success.

I am so happy for you and your arm. Your story is inspirational and is another incentive to continue. The big incentive at the moment is how good I feel today after being off the protocol for 5 days. I realize my MS has not gotten worse than it was before I started. It is not progressing uncontrollably fast where I would need inpatient care in 6 months due to inability to think and care for myself. I realize all those s/s I was feeling was in fact a massive die off toxicity reaction. So the good news is I know the protocol works for me and now I know where my limits are.

But most of all, I am eternally grateful to hear of someone who has had such excellent results. You have inspired me to continue. Thank you for sharing. <3

 

Recently started the Wheldon protocol and looking forward to connections as we work our way through

While it's an awful lot of reading, if you're trying to plow through this whole site, there are plenty of us who made it through the protocol and live our normal lives today.

We lost much of the original site when we switched over to this format, so many of our original members aren't here and don't post, because they've moved on. Rica, Norman, Red, HDWhit, Michele, Sarah, myself, and I know at least a dozen others (who are about to remind me I left them out) were original members of the site when Jim Kepner first started it.

Personally, I went from an avalanche of MS symptoms in August of 2005 back to wearing high heels to parties and being able to remember phone numbers and details and being able to stand on one foot with my eyes closed, thanks to this protocol.
I'd be just a distant memory if not for Sarah, David, the Vanderbilt work and abx.

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

Thank you for you reply. It is inspirational to hear that others have made it through. I hope to be one of those numbers some day. All of the work that you all do to spread the information and details of this protocol is fantastic. I am not sure what I would be doing if I wasn't doing this. Thank you!!

Recently started the Wheldon protocol and looking forward to connections as we work our way through

MacKintosh, that is so true what you just said. It is with all the research, information and commitments of so many past and current leaders that members (new and not so new) will be going through the protocol and have the confidence and determination for success! 

Hello to new members, toliveagain and Denis. And as always, to Sarah, David, Jan, Lizzie, Kiki, Neena, Sonal and Mac. I hope all of you are doing well in these unbelievable times!

Chris

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

Sonal finished her twelfth pulse. It is now one full year in July this year since she started pulsing with metro. She started the Roxy Doxy regime in April last year.

Why I am writing to you is that the last pulse was very difficult for Sonal -- lats of fatigue and nausea. We ere wondering if she should move to Tinidazole instead, at least try it for the next pulse. Would it be the same dose of 400mg three times a day for five days along with the daily Doxy Roxy plus supplements? Take care in these difficult corona times.

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.

Neena, no! If you look it up here, Tinidazole is 1000 mg a day, or two goes of 500 mg. You can by tablets of 250 mg or 500 mg. I did find it much better when I changed to it from Metronidazole, although I must say that David has never prescribed it himself because it wasn't licenced here then. I bought it online from India.

Sarah 

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

Thanks Sarah for your prompt response. So it would be ok for Sonal to do the next pulse with Tinidazole 1000 mg a day, that is two doses of 500 mg. I think the Metro she was taking three doses of 500 mg a day during the 5-day pulse.

Just to clarify -- two doses of Tinidazole a day, each 500 mg -- plus of course the usual Doxy and Roxy plus supplements.

I have asked you this before but asking again since she has not really seem improvements in mobility -- last ten days has gone back somewhat with more spasticity and worse right hand could not use the walker safely -- should she give a shot to Doxy plus rifampicin  for a month or so? In short replace ROXY with Rifampicin?

Best wishes. 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.

Neena, yes tinidazole is taken as 500mg twice a day which is why Sonal might find it better.

Now, about rifampicin, don't let her try it. People lik Rica are made of tough stuff but others aren't. I took it for six months and  hated it. My improvements virtually stopped.

Also, it should be left as a drug for TB, because so few drugs work for that anymore.

I am about to write to Sonal so will tell her 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.

yes Sarah,

So it will be Tinidazole for Sonal next pulse whenever she feels ready. And No Rifampicin!

Thanks for the clarity with which you responded. We already bought tinidazole earlier. You never know with this pandemic which drug could go short supply. But so far the abx have been available in India, without much problem. I was afraid with maybe some disruption of bulk supplies of drugs from China, there would be a problem.

You see Sonal's recent lack of improvement may also be due to fact that her yoga teacher not coming nor her massage woman. So less movement, less activity for her and stiffer muscles.

In Delhi (and Mumbai) it would seem we are past the peak in Covid but elsewhere in the country numbers going up and up, raging away, with no end or even peak in sight!

 

Take care. I am so pleased that David thinks Sonal looking talking better is a big improvement! But only if her mobility or her right arm would show some sertious improvement!

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'm so sorry I didn't see this sooner! But, of course, Sarah (thankfully) caught it.

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

Any mention of rifampicin, I seem to catch immediately!!!

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.