Cpnhelp.org

Hi Kiki,

It will!!  It will!! Hang in there and keep going forward. We are in this together. What supplements do you take? Would you like to compare notes?

Warmest hugs,

Ronni (Toliveagain)

How long did it take for some folks on here to truly feel a corner had been turned? I've now since returned to full time meds route since I first started outJan 2019 and after a 6 month plus period on intermittant. As I've only gone downhill recently I felt the need to try once more to cure myself. After such a long time and without any signs of improvements I'm naturally doubting myself but I have no other support than what I get on here so it'd be awesome if more successful folks can share help and tips.

Kiki

Dear Kiki, thankyou for starting this thread because I would like to know the answer myself. So many people here have come and gone over the years now since I started my treatment in 2003 that I have lost track.

I started in August 2003 and took full-time treatment for a year. I then moved on to intermittent for the next three years.

I took doyxycline and roxithromycin then pulsed metronidazole eventually swapping for tinidazole. I took rifampicin for six months but felt worse during this time.

When I started I did not think that it was going to work, but now am very glad that I did.

Sarah 

Chris, how wonderful and when you least expected it!

I must say that my right foot is still a little weaker than the left but not visibly. It always being my right hand that I wanted back. 

Sarah

Chris, another reason other than too much salt could well be not drinking enough water: this might sound counterintuitive but your body might just be trying to hold on to the fluid it has.

Google it!

Sarah

Chris, that is wonderful news. I am sure you will keep improving. Those of us with heavy bacterial loads will take longer to kill off the bacteria and repair.

Kiki, I feel like you and I are in this together because until I knew about Chris, I thought you and I were the only ones still on this site on the protocol.

I will try to catch up on relaying where I am at. 2017 I had my first definable symptoms but denied to myself. Looking back I had had vague RRMS episodes for 20 years but they were small and easy to blame on something else. The 2017 episode was the first really big attack. 2018 I had symptoms of right foot drop, left arm paralysis, bilateral Trigeminal Neuralgia, Afib, slurred speech, nystagmus, double vision... as well as just about every other symptom associated with MS. Not altogether, they rotated throughout that year. In the beginning I was able to make excuses for each (again), like the arm paralysis was because I had been lifting heavy tiles and had pulled something. But that year was HORRIBLE and by the end of that year the diagnosis was undeniable. I knew I had MS. I had an anonymous MRI that showed lesions and had two physician friends say to me, "You have nystagmus, have you ever been checked out for MS?" Then I got a bit better - obviously RRMS but the episodes were getting closer and I knew in my gut, I was converting to SPMS. By late 2019 things got worse.

The big one for me was memory loss, cognitive decline and the above symptoms returning more severely and so frequent that they were on more than they were off. I felt I was near needing inpatient care with many days where I had trouble taking care of myself. I have never had an "official" diagnosis but I work in the medical field and had co=worker doctors do a curb side on my anonymous results. I did not want to go the standard medical route with expensive drugs that harm more than they help. I figured if I couldn't figure something out on my own, I would let nature take its course. I started combing through research studies and developed a course of supplements (coincidentally almost exactly the same list as Dr. Wheldon) and started taking those in Jan 2020. A few months later I found and started the Wheldon protocol, but being so far along (near in patient) I felt I had to accelerate. I have been on CAP since April 2020. I am in month 11 with 12 pulses completed. 

I have to say that within 2 days of starting antibiotics, I started to feel worse. Some days were a bit better than others, but for the next 8 months the trend was definitely downwards each day. I had one very very good day in month 6 that kept me going with the hope I would get more days like that soon. One day!!!! Actually only about 5 hours of one day where my head was clear, my spirits high, I went for a jog (more like a fast walk) around the block. Then right back into hell. But it was enough to keep me going forward... that and I just kept saying to myself, 'what choice do I have?'

Decline, decline, depression, so many days I would think the same as Kiki is now... that my MS was progressing and the antibiotics were not helping and were probably killing my liver and kidneys. But, 'what choice did I have?' I would get these weird symptoms like horrendous burning feet (lasted for over a month), and bone-aches that moved around my arms and abdominal bloating, etc. I would come to this website and read other posts where people had experienced the same symptoms, so I kept telling myself it must be working because others had the same. And sometimes, maybe, it might have been wishful thinking, but I kind of noticed blips of improvement in whatever area or symptom had just been worse. But the improvements were so small that even journaling didn't clarify things. My journal entries are all over the map.

Then in late month 8, I had 4 days that were just as incredible as those 5 hours I had in month 6. Almost all symptoms were gone and my brain hummed. All except for memory, that was still shit. But I felt so good those 4 days. Then, poof! Everything went back to the way it was before, crap!!

I am starting month 11 and have 12 pulses under my belt. Although my pulses are not full pulses. I usually can only take 250mg Flagyl (how it comes in the country I live) twice a day for 4-5 days. Then I have 2 weeks of pretty profound die off and porphyria. Then a few OK days, then I start another pulse. The reason I am doing it this way is Stratton at one point said those with MS needed to accelerate the protocol. And somewhere I read, it was either Stratton or Wheldon who said something about how ultimately, one should be able to take Flagyl every day without die off. So I am working on closer timed pulse intervals as an acceleration and to try to get to daily, then I will up my Flagyl dose to 500mg BID.

Since mid month 8, my MS symptoms seem to be more predictable now. Before that it was just down hill every day. Since month 8 my symptoms are worse towards the end of and for two weeks after a pulse. There is a definite pattern related to the antibiotics, which now gives me hope the antibiotics are actually working. Whereas before month 8 it was all downhill with no improvements except for the 4 hour window in month 6.

The one thing that is lagging is memory improvement. That still seems to be getting worse around my pulses, and just a tiniest bit better (which is still near Alzheimer's levels) during my good days. I still have not gotten to pre-antibiotics levels with memory except for a few hours about 3 weeks ago. The loss of memory is really difficult. It is nearly debilitating because I have difficulty finding my clothes, remembering my meds. I write EVERTHING down in my phone calendar. If I think of something while I am at the store, I am guaranteed to not remember by the time I turn into the next isle, nor remember it ever again. So I make a note. But even then I usually forget about the note and find notes days later where I can't remember what they were about. But there were a few hours a couple of weeks ago where I felt my memory was coming back. I even remembered my grandmother's bday. Those few hours were the only time my memory has gotten any bit better and they give me hope my old memories will eventually come back.

I am on Roxi 300mg am, Doxy 100mg BID, Flagyl 250mg BID X ~5 days about every 16 days (give or take 2 days) plus about 20 supplements. I take all supplements on the Wheldon list plus about 5 additional ones that I have found research papers that indicate they might have anti-Chlamydial properties. I am hoping I am killing CPN even faster with these additional supplements, and judging from my continuing porphyria, that might be true. I have tremendous die off reactions and am in some stage of porphyria almost constantly. Yes, I take copious amounts of moppers. They do not seem to help much.

The reason I am on this site today is I am having another mild emotional setback. I am just really tired of the porphyria and abdominal bloating. I also feel like I need some indication I am getting better... something positive. The 5 hours in month 6, 4 days in month 8 and couple of hours of memory in month 10 just aren't enough for me at the moment. I think the close proximity of pulses and constant porphyria has gotten to me and I need a short break. I stopped antibiotics 3 days ago (still taking all supplements - even anti-CPN ones) to try to clear the porphyria and abdomen and to see if there is a difference in my symptoms.

Day 1 same ol same ol. Day 2 felt like superwoman and walked miles without balance issues or weakness. Today, IDK, not feeling so well, lesions on hands (porphyria), tired, walking short distance was difficult but abdomen seems to be going down. I don't know whether to go back on CAP tomorrow or give it a couple more days. In reading stories on this site, I noticed Norman took a little break in the middle. I wish he and others were still here on the site to ask questions. I will probably stay off abx for a few more days and then start back up.

So this was a long story to answer Kiki's simple question. When did you turn the corner? For me, late month 8 I started to notice my symptoms seemed to more timed as die off than just constantly getting worse. But the bad days are still worsening with each bad day a bit worse than the bad day before. I feel like the variation of good and bad days is getting wider (good is getting more good but bad is getting a bit more bad). Overall I have this gut feeling that more good days are just on the horizon and I feel the increase in symptoms is die off and repair (I researched a bit and "repair" often is painful) and I have the underlying feeling that my MS is improving but I just can't see it yet.

When I first started I thought I would be on full time antibiotics for 6 months, and then intermittent for 6 months and be done. HAHAHAHA. Now I think I will be on full time antibiotics for probably 2 years, and intermittent for 2 to 4 years after that, and I am probably underestimating again. This is a long haul endeavor!!! I am hoping to add in Rifampin in about 6 months to a year.

I hope this helps someone. All I can say is stick with it. It's one of the toughest things I have ever done, but I know in my heart it will be worth it in the long run. And thank you to anyone and everyone who has contributed to this site. I wouldn't know what to do, and would have gotten discouraged and quit so many times if it wasn't for this site. Every time I come back I find new and more information. There are rabbit holes of dialogue that are so intriguing and informative. I am so grateful for you all!!!

Hey Chris,

Just a thought. You mentioned atrophy and I know Kiki had said something along the same lines. I just remembered (the thought was lost in brain fog for the last few months) but I just remembered something I saw when researching the Wahls diet for MS (she claims to have cured her MS with diet alone)... anyway, brain fog misdirect. My point is, in an interview with Wahls, she said she used a TENS machine every day.

So about 8 months ago I bought one (easy enough to get online) and was using every night before bed, trying to maintain muscle mass because my balance and fatigue issues precluded much walking.

Side note... I am so impressed with myself, that I used the word "precluded". I used to be a research geek and used big words alot. Now with brain fog, 5 letter words are my max. I am giddy that that word popped into my head and I was able to spell it. Gotta take the wins where you get them!

Back to message... I moved recently and realized after reading your post that I haven't been using my TENS unit in a couple of months. I will start back up tonight. And you might want to look into getting one. In addition to providing muscle contractions, it can be another indicator of progress. In the beginning, I noticed my left foot didn't bounce nearly as much as my right. After using for a few months I noticed a better bounce in my left. It was inspiring at the time. But memory and brain fog made me forget about that. Glad your post spurred the memory in me and I will get back to it. This brain fog is a bitch!!

Wishing you more continued progress. If you ever want to talk, PM me and we can connect. It seems like me, you, Kiki and Sonal/Neena are the only ones still here on the site at the moment. I still get inspiration from reading old posts from 2004-2007-ish. So much information in there. I wish I had found out about CAP and been a part of this community back then. 

So..to anyone else getting covid jabs-

Yesterday I got my 2nd AstraZeneca dose and though I prepped with taking Nurofens through day and before bed I'm not sure whether this time was easier on me because of that or if 2nd time doesn't affect you as much. Based on the misery of 1st jab side effects I wasn't willing to "just" discover that though. Basically the night was easy and I had no problems getting around. I was really worried and prepared for worse so I was well pleased to sail through it.

I have noticed a general weakness in body on this the day after jab so I feel there's been some setback which means sticking to my physio program however reluctant I feel about it/tired, and just persist in getting back on strength track. I felt same albeit worse on 2nd day after 1st jab so I recognise my bodys' response. Maybe with my body being generally in a state of overwhelm I see/feel this changes more. Again my partner had no symptoms.

Kiki

Has anyone come across or worked with Nicole Apelian Stateside? What's your thoughts please?

Kiki

Neena here is an internet page with lots of links:

nicole apelian - Yahoo Search Results

Sarah

Here you will find out more about her and her disease

The Lost Book of Remedies

Kiki, in the flash of an eye you can buy through GPAY.

Sarah