Cpnhelp.org

I can only comment from my own experience, but when I had an MS exacerbation, I lost some function I that previously had worked (i.e. I would go to bed able to see color and wake up not being able to see color).  On the other hand, a few days after finishing a pulse, I would start to feel, well, like I was hung-over from drinking too much.  I would have Nausea, Aches and Pains, Malaise, Loss of Coordination, but I would not lose bodily functions.

The Cpn Handbook discusses a number of things to aid the body in getting rid of the endotoxins.  For me taking charcoal capsules provided some relief, but bile-acid sequestrants like Wel-Chol were much more effective at getting me through the die-off and back to feeling normal.

I see the body of my post did not go through. Thank you Hdwrit for responding to a post that was just a title.

I have been on the protocol for about 4 months. I started out kind of doing my own thing, pushing the envelope having ramped up the antibiotics from Doxy 100mg/d to 400mg/d plus Roxi 150mg BID with two Flagyl pulses of 4 days and 6 days all within the first 2.5 months. Needless to say I had quite the reaction. Posted here and got the slap on the wrist.

I was in such a brain fog with the escalation of antibiotics that I could not tell if the symptoms I was experiencing: Loss of balance, difficulty going down stairs and robot walking, trigeminal neuralgia, tremors, sometimes fasciculations in my legs and butt, general tiredness and worst of brain fog, inability to comprehend things as fast and profound memory issues were rapidly increasing MS or toxic die off reactions.

I went off of all antibiotics for a week and seemed to get a bit clearer so decided most of those symptoms were toxic die off. I started back up with Doxy 100mg BID + Roxi 150mg BID because I thought it was the two flagyl pulses that had pushed me over the edge last time. And I thought I remembered being pretty stable on the two abx. Within a day my walking suffered and thinking got muddled and memory in the toilet. So I dropped the Doxy and have been on only Roxy 150mg BID + supplements for about 3 weeks. My symptoms have cleared just a bit. My plan is to hold here for a long while then slowly add Doxy and so on. Probably not getting back to a flagyl pulse for many months.

My problem is, I can not tell the difference between MS symptoms and toxic die off reaction. For me they seem the same.

Hdwrit seemed to indicate MS symptoms were vision (functional) things and toxic die off was just weakness, fatigue etc.

Is that how it is for everyone else? Are these symptoms I am sometimes get (especially when I was taking higher dose Doxy & Flagyl) ... like trigeminal neuralgia, balance, disorientation, cognitive decline, memory loss, difficulty walking... are these MS or toxic die off?

Could be either but why are you taking more than the recommended dose? It is recommended for a reason and by bacteriologists.

Yep, that is the question. Why push it? Am I pushing it? If you include Lyme, chronic fatigue syndrome, etc.... all the different disease states where long term abx are being advocated for persistent bacterial infections, there are a number of antibiotic protocols that have popped up in recent years with varying levels of speed and intensity. Many different protocols out there now.

I was diagnosed with RRMS 3 years ago and refused standard treatment. My MS was pretty mild at the time. About 2 years ago I read that some people had been "cured" by taking Minocycline (the article did not mention bacterial infection - just an observation that some MS people got better with Mino). My RRMS was getting a bit more frequent so I got a prescription for Mino for acne, which I had anyway. Figured 2 birds with one stone. With the first pill I became dizzy and fatigued. By day 4 I literally could not walk to the kitchen and would fall sideways into the wall for lack of balance. I could barely think, could not control my extremities, nauseous, intense brain fog where I didn't know where I was or what was happening. I knew from my medical background that Minocycline can, in rare cases, cause cerebral edema (classified as an allergic reaction) that can progress to, and cause death. I came out of the fog enough on the eve of day 4 to remember this and stopped. I figured I was one of the rare people allergic to Mino and that I narrowly escaped a deadly allergic reaction. And poor me, I could not tolerate Minocycline to see if it cured my MS, at least that is what I thought.

Then my MS seemed to be in remission for about 6 months and I even started to think that maybe I was misdiagnosed. Didn't think it had anything to do with Mino and actually didn't think much about it and moved to another country. Then about a year ago I started to notice symptoms again. I researched drugs and supplements and ended up taking almost all of the supplements listed in the Wheldon protocol just from my own research. I had never heard of Wheldon or CPN as somehow that info never popped up in my searches, but I researched journal articles and found that with MS different biochemical reactions were altered. SMAD-7, MMP-9, PAR-1 and TN17 (to name a few) were increased and TGF-B1, TIEG1, ZO-1,etc were decreased. So I found supplements that did the opposite of those (lowered SMAD-7, increased TGF-B1, etc) thinking they might help with, or reverse MS symptoms. And I found L-Carnitine and Himbacine cured mice. But all the while thinking the supplements would be working on biochemical reactions that were out of whack because I had a genetic defect, not knowing about CPN.

I felt a little better for a few months then started to decline and went back to researching. Four months ago I came upon the research articles that MS might be a CPN infection. Wow, crazy idea at first, but then it all made sense.

I found the Wheldon, Stratton & Thibault protocols and a few other random articles and posts from different doctors describing their protocols for abx treatment for MS, Lyme, chronic fatigue, etc. After reading about CPN and the protocols, I looked back on my Mino experience quite differently. Possibly it was a massive toxic die off reaction from the Mino attacking CPN that caused the cerebral edema and not an allergic reaction. Looking back maybe the Mino lowered my bacterial load to a point that left me free of symptoms for 6 months until the bacteria built back up again?

Anyway, in the last 9 months my MS has progressed exponentially. I have obviously moved from RRMS to a very progressive PPMS. I now live in a country where there are not many doctors, but abx are over the counter so upon finding the protocols, I decided to try on my own.

I had been taking supplements for about 6 months already, so I started on Doxy 100mg/BID and had very little reaction. After reflecting on my Mino experience, I decided I had room to push it  so I increased faster than the protocol, because... 1) The 4 days of near death Mino hell gave me 6 months of remission and I wanted more of that, at any cost, 2) My MS was progressing so fast, I felt (still feel) I am in a do or die scenario to get my CPN levels down, 3) no family or sciency friends or doctors to help figure this out, so winging it, 4) there are many different protocols out there with varying levels of intensity and speed - no idea which one is 'best' and every person is different, so might as well try the aggressive protocols first and back off if needed rather than try the slower protocols, get discouraged and let my MS get worse (it was progressing so fast), 5) my personality... if I were a scientist, I'd be the one, who after inventing a great new drug, I'd try it on myself first to see what happens. That's just me.

So I pushed it. And I have already posted about my first round with abx a few months ago... A couple of weeks after starting Doxy, I added Roxi and up'd the Doxy to 400mg/d, then did 2 flagyl pulses a week apart all within 10 weeks. Each step seemed fine at the time, but they all compounded quickly and by the second flagyl, I found myself in full blown pseudo-porphyria reaction. I stopped all abx, took anti-porphyria measures (fluids, glucose, cimetidine, etc) and it cleared quickly. But I am sure my kidneys and liver probably took a hit and I will not let myself get that bad again.

So this is where I am now. I took a break and then started back up on Doxy 100mg/BID + Roxi 150mg/BID - a place where I felt stable last time. Within a few days I started feeling pretty bad so I dropped the Doxy, mainly because I was afraid of skin lesions (my porphyria had a huge skin component last time) and Stratton starts with Roxi. I have now been taking Roxi 150mg BID + supplements for 3 weeks. I was having some symptoms that seemed to peak a few days ago (hence the post) but are now diminishing. So I am thinking about adding Doxy back in sooner rather than later.

Why am I pushing it and going off protocol again this second time? It depends on who's protocol you are following. Wheldon is quite conservative. Stratton starts with Roxi so you could say I am pushing his protocol now, but still going too fast. I also have read case studies of a few patients who have had their doctors (mainly Australians) prescribe 3 and 4 abx all together, right away in bursts (2 weeks on, 2 weeks off) for a year. No tapers at all. These people report feeling like crap for the year and even having to go to the ER a few times during the bursts, but being cured by the end. There is the guy 'Chenman' a biochemist? on Thisisms forum who advocated high dose Doxy for 2 days each month, forever, with no other abx... a completely different regime that only keeps the active form of CPN in check. Not a "cure" but a way to stay symptomless. Interesting concept and one I might entertain when and if I get my CPN levels down to a manageable level. There are lots of different protocols and one must do what feels right for them.

So back to why I am pushing it? I am 60, alone and living in a foreign country. There is covid and going back to the US is not an option. I don't have medical insurance anyway. As my MS has progressed quickly in the last year and is on the brink of being debilitating, I feel I need to get my CPN infection levels down below the tipping point (back from PPMS to RRMS) before I can switch to a slower, more gentle, gradual killing of the bacteria. And on reflecton, I truly believe my 4 days of near death with Mino gave me 6 good months where I did not even notice my MS. So if I can straddle that line of cerebral edema, porphyria and toxic die off reactions, and take as much abx as I can tolerate, I might be able to get my infection load down to a more manageable level, and be able to continue to take care of myself and not end up in some horrible foreign old folks home just to die in a few months anyway.

But I realize this is a HUGE risk and I am killing brain, kidney and liver cells with the heavy toxin releases. I am not advocating this for anyone else. You asked why I am pushing it and this is why, I am older with not allot of time to go slow. I am alone so I HAVE to get to a functional state and CANNOT let myself progress to debilitation because there is no one to care for me. And if I go slow, I would probably die from MS in a few years anyway so I might as well take these risks. I have had an amazing life, lived around the world, seen wonderous things and I am ok looking at the end... so it doesn't matter how it ends, MS or liver failure. And I feel I have just a bit more of a chance managing the possibility of liver failure than beating my MS at the slower protocols.

And lastly, it feels right for me. It feels like pushing it is going to work for me, although I do occasionally have my doubts. Which is why I posted my original question. But I wouldn't push it if there wasn't something inside telling me this is the right thing for me to do.

Since this is a Wheldon website, please let me know if you would like me to stop posting here... as I am not following Wheldon protocol and might give other people crazy ideas. But if you would like for me to keep posting my progress, or post questions when I have problems... or comments when I have successes, I am willing to keep posting.

Hi Jan,

Thank you so much for replying. I take 500-750mg of activated charcoal whenever I wake up in the middle of the night around 2:30am. The 'wake up' has become pretty routine so I end up taking charcoal 5-6 days a week. Should I increase?

Thank you for your help.

Hi MacKintosh,

Thank you. I will keep posting.

Hi Jan,

I think you are right and I need to figure out my "cues". What I am noticing so far is my cues are pretty much the same symptoms as I have with MS except worse, + significant brain fog, memory loss and depression more than anything I experienced with normal MS. Twice now the brain fog has crept up on me and affected my ability to make judgements and caused me to question whether my MS was getting worse, or if my symptoms were from toxic die off. With this second go around, I have pretty much concluded they are toxic die off. I am figuring out where the line is; when to pull back, when to push forward and when to hold tight. It is all a learning curve and requires really listening to your body because the brain fog depressive confusion state can sneak up on you so easily and make you question everything, and also make you come up with some crazy ass ideas about what is happening and what to do. I have learned that when I get a little crazy I have two choices. 1) pull back and lower my abx doses or 2) know I am crazy, don't listen to myself, have faith and ride it out until the symptoms peak and start to diminish. I am feeling pretty good about where my line is now and I feel confident I can straddle it successfully while escalating faster than the protocol, although slower than I did the first time.

I increased my activated charcoal from 500mg (2 pills) to 1500-1750mg (5-6 pills) a couple of days ago and I am feeling better. AC causes constipation (it's actually an anti-diarrhea medication), so I have added a Senakot at bedtime and increased my magnesium, and that combo seems to be working well. I think I need more AC because I am pushing the protocol and hence have more toxic die off.

Waking up at 230am is on purpose and not anything to do with my liver, that I know of. I read where a lady said there was no time during the day when she could take her AC without it interfering with her other meds (as is the case with me - I am taking 24 supplements in addition to the abx, broken up into 4 medication times during the day) so she took her AC when she woke up in the middle of the night to pee. The next night I just so happened to randomly wake up at 230a so took AC. It has turned into a self made ritual where every night when I go to sleep I tell myself, I will wake up at 230a to take my AC, and I do. And then I fall right back to sleep again. I have gotten to where I can almost take it "in my sleep" without really waking up.

So things are working out. It has taken a couple of tries to find my sweet spot, but I think I am close. I am sure there will be more bumps and bruises as I progress. Thank you all for your help and insight. I will post again when something changes or when I have more questions. Take care and keep fighting!!!

Hi Toilveagain, after being of the site for a bit too long, I have been catching up by reading your fascinating posts. I understand now why you were rushing headfirst into treatment but David (Wheldon) always says to go easy: rushing doesn't work.

Now, I see that Stratton's first treatment choice is now roxithromycin. He must be very glad because until recently it wasn't even licensed in the US. David got it for me from France but it wasn't much used even here in the UK.

The medical fraternity is rather conservative because this antibiotic has been available for years and it gets into the brain very well.

Sarah