8 Sep 2020
Author
toliveagain
Title

Toliveagain Update 090820

Body

Hi All,

I thought I would post an update.

To recap: I started Wheldon protocol on my own in late April, a little over 4 months ago. I went in hot and heavy and did 3 flagyl pulses in the first 2 months. I had horrible pseudo-porphyria and ended up going off antibiotics for a week. Felt better and started up more slowly the second time.

Comments

Hi All,

I thought I would post an update.

To recap: I started Wheldon protocol on my own in late April, a little over 4 months ago. I went in hot and heavy and did 3 flagyl pulses in the first 2 months. I had horrible pseudo-porphyria and ended up going off antibiotics for a week. Felt better and started up more slowly the second time.

Second attempt: Started on Roxi because my porphyria had such a huge skin component that I wanted more time off from Doxy. After a week on Roxi, felt relatively good so added Doxy. I have been taking 150mg Roxi and 100mg Doxy twice a day throughout. I did one flagyl pulse of 500mg at night, the next morning and next night - 3 pills about three weeks ago, and started feeling so sick I stopped. On the second day of flagyl (after pill #2) my hands started to burn and the old spots where I had porphyria skin lesions before started to turn pink. Hence the quitting.

Since the flagyl I have had good days and bad days but the good days are not that good. The good days are about equivalent to my bad days before antibiotics. I always seem to have poor balance and nearly about to fall. My mentation is poor with pretty significant brain fog. I feel I can barely contribute to conversations with friends and they often look at me like "what's wrong with you, you must be really tired today."  My memory is absolutely in the toilet. I can't remember if I have taken my pills or brushed my teeth just 5 mins after I do it. And its not like regular people where if you can't remember, then you look at you toothbrush and the memory comes back. I can stare at my tooth brush for 30 mins and still not remember if I was in the bathroom at all that morning. And walking can be quite robot like, rigid with each movement overly deliberate which makes me look like a robot learning to walk.

So that is what it is like about 50-60% of the time. Occasionally these things (balance, walking, mentation and memory) are a little better but that is random and the improvements jump around within my symptoms without seemingly any direct cause from what I do. Some days I walk a little better. Some days my balance is a little better, etc. but I rarely have days that I feel like any of these four things are improving in the long term. In fact all 4 seem to getting a bit worse over time with moments of improvement.

The moments of improvement are rare and short in duration but intense. One day about 5 weeks ago my brain was whizzing along like a quantum computer. I was at my laptop and I clicked and scrolled and typed with lightning speed. These days I often have to look up the spelling of words or check a thesaurus because of such significant word search. I have done it 5 times in this blog already. But that day, everything came to me instantaneously. I wrote lots of emails and papers and didn't look up one word and every word I wanted to say just popped into my head. Then about 4-5 hours later, poof, it was gone. And my brain was back to the sluggish meatsauce that I live with now. Likewise I had a day where I walked normal and even ran down to the pool to swim (50 yards). A few hours later I couldn't control my legs. One dinner with friends, one of them said "You're really funny." All other days I can tell they think I am flat. I think I am flat.

So with all of that, I still think I am improving. Even thought the balance, walking, mentation and memory are probably the worst I have ever experienced, many things are improving. My hand tremors are nonexistent (most days). My trigeminal neuralgia has not flared. My vision is about the same and some days maybe a bit improved. I haven't had heart arrhythmias in over 3 months. I haven't had a calf cramp in months. I only occasionally have fasiculations and when I do they are very mild and short lived. I get massages about 3 times a week (I live in Thailand and they are $6 each) and I feel like my calf muscles are relaxing easier. I am almost positive I am feeling the bottom of my feet more. I have super significant pain in my feet, mostly at night that I did not have before antibiotics. It feels like they are on fire and they turn bright red. It seemed to peak about a week ago and the last few days is getting better, coinciding with the feeling coming back.

I started taking charcoal about 2 months ago but found the constipation, even with stool softeners was difficult. So I have switched to Cholestyramine, one packet twice a day about a week ago. One the second day I thought I felt mush better. It was one of the good days. Since then I have digressed again. But not as much trouble in the bathroom.

Last issue is acne. OMG the acne!! Horrible cystic acne like I have never had in my life. It popped up a few months ago on my first attempt and I thought it was due to B12. I was taking 5-6 per day. So stopped for a few days and then started back up at one every other day and that seemed to help. About 1.5 months ago I read high dose Biotin helps with MS so I started taking 100,000 - 150,000 mcg per day - whopping dose but recommended was 100,000 to 300,000 mcg per day. With the acne popping up again and only taking a little B12, I looked it up and Biotin can cause acne too. Apparently most of the B vitamins are taken up by the same receptor, so if you take a lot of one, the others will suffer. And vitamin B5 (memory failing - can't remember but I think that is the one) decreases acne. So if you take high dose B12 or B7 (biotin) then B5 suffers. So I stopped the biotin, waited 7-10 days. Acne did not resolve. I figured it had to be a supplement I was taking so did a search and found zinc helps with acne. I realized I had run out of zinc a few weeks before and had neglected to get more. So bought some of that and started taking 3-5 times a day. Within 2 days acne started to clear. So grateful for the acne because I think it was my body telling me I had a zinc deficiency.

So that's where I am at. I continue to think I am getting better even though my symptoms seem to be worse. I guess they are not as bad as the one big episode of MS I had about 3 years ago when I got diagnosed. But that episode lasted about 6 months but where I saw continued improvement over those 6 months, where this has lasted 4 months and the big 4 symptoms that are majorly affecting my life (balance, walking, mentation and memory) aren't getting better yet. Ho hum. But everything else is so I am continuing forward.

I think I may try my second flagyl pulse (of this second round) in a day or so. I am hoping that as I get more feeling in my feet, that my leg coordination (walking) will also improve. It feels like I am a 2 year old just learning how to use my appendages. And since I had that amazing mentation/memory/thinking day awhile back, I hope those too will start to improve soon.

So this is the update of someone who seems to have a huge bacterial load, trying to manage the die off reactions while progressing in the protocol as fast as possible. This is not for the faint of heart

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

It is the next day, and sadly I had some significant fasiculations this morning upon awakening. My legs were jumping around like jumping beans. But as soon as I stood up and started walking, they went away. I think I will start flagyl tomorrow.

I was a bit depressed this morning (I find my depression and anxiety are increased with the die off), but with the fasiculations this morning, i was more depressed. So I took the time to read some of the stories on this website for inspiration. And that it was!!!  Thank you all for posting your stories and the symptoms you had and how they resolved. It seems to be different for everyone but all with similar themes. I am so inspired to keep going and hopeful again.

As I read Livingontheice... Their story seems so similar to mine. I too am in the medical field and have done the on again off again  indecision in the starting phases of treatment, unsure of what I was experiencing. It sounded like they started to get real results around month 7. I am on month 4, so.... gives me hope!

With David's story, I realize that my gut reaction that I am getting better actually has some basis in fact. There are many things with my body that I have noticed getting better, but with brain fog, and kind of forgetting or neglecting to attribute these things to the antibiotics I thought it was only a gut feeling that I am getting better. But in fact I have a lot of evidence that I am getting better. For example, as was the case with David, my neck is much thinner and I do not feel the knots of inflamed lymph nodes as much. I had gotten so used to the knots in my neck that I thought they were normal life, everyone had them, they were due to stress. But now in a matter of months, they are gone. I commented to a friend a couple of weeks ago that I now seem to have collar bones where I haven't had them in the last 2 decades of my life. And I thought my neck and shoulder area looked like it did when I was in my 20's, more relaxed, thinner, supple, not hunched and rounded... all without exercise. And I have lost about 10 pounds in the last 2 months (with second attempt), my stomach is flatter without exercise (except for bloating of charcoal), my skin seems to be healthier. David said his heart arrhythmias ceased and his BP went down. I have experienced the same.

There are other symptoms... things I wouldn't normally notice, but if I look close, they are getting better. In the middle of the first antibiotic attempt, I had one of my tonsils burst open with excudate (gross greenish stuff). I gargled with Chlorhexidine and within a week tissues seemed pink and healthy again. Since then my tonsils, which have been large and swollen for as long as I can remember, have continued to shrink to about 25% of their size, almost normal size. I am in the anesthesia profession and intubating people was my job... so I have seen a lot of tonsils, haha. What i think happened is sometime in the past, I had crypts in my tonsils (everyone does), little cavities and indentations. I surmise that as my tonsils were growing bigger with more bacterial load, the entrance of one of the crypts must have swollen over and blocked the hole, and hence material got stuck in that crypt and festered, possibly for years. When my tonsils shrunk with the antibiotics, the entrance opened and the crap that had been stuck in there was released. But bottom line, my tonsils are smaller than I can ever remember in my life. And from David's story, I also realize I have not been getting sinus infections like I used to. All my life, any time I caught a cold, it would turn into a two week sinus infection and that happened about 6 times a year. I have always been kind of "sickly" in that regard. Haven't had the inkling of an upper resp cold or sinus infection since starting antibiotics even though I have been around others that have been sick. Of course could be because i am taking antibiotics, but antibiotics don't prevented the common cold or flu. And I haven't had either of those, nor Covid. BTW, side note: there is no covid in Thailand so we don't wear masks much. I touch and hug and laugh outloud (spraying saliva), and receive same from other people every day. So can't say I am not exposed.

Anyway, I just wanted to add some good news to the sort of bad news of my last post. Despite all of the toxic die off reactions, I am still very positive about the protocol. I feel I am improving, and because I have/had such a huge bacterial load (unverified but evident from my reactions), I think I must live through 4-5-6 months of feeling like crap before I will start to see and feel improvements in the big 4 (balance, walking, mentation, memory).

By the way, even though I had fasiculations this morning, my mentation is a bit better today. Only had to look up the spelling of three words for this entire post. And I think this post is abit more organized and understandable than the one yesterday :)

I am so thankful for this website, the information and the stories. The stories really help me see straight, continue forward and have hope within the brain fog, depression and anxiety that accompanies the toxic die off. Thank you all for your contributions. You do not know how much you help others by contributing to this site. And thank you all for listening.

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

As no one else seems to be on this site much anymore, I am using it as my own personal journal, haha.

It is the next day, and wow, the ups and downs I can go through in just 24 hours is amazing. This is the third time this anxiety, questioning, need for validation from others has happened since I started antibiotics in April. And being the third time, I am realizing, I think it happens as I am making some improvements. But those improvements come with a dip of significant worsening symptoms just before I get better. To explain... for future people who might have same and be just as confused, this is what it feels like:

I'll describe the burning feet issue first. I never had what I considered peripheral neuropathy (pain and numbness in my feet) prior to antibiotics. Three yeas ago when I was diagnosed I had this deep achy pain in the ball of my left foot that lasted for about a month, and I remember a few years earlier, before I was diagnosed I had pain in both big toes where I thought I had gout, but that only lasted about a month. But no REAL pain or burning. Ok, during the bad bout three years ago when I got diagnosed, my left side was semi paralyzed, trig neuralgia, difficulty eating/swallowing, nystagmus, sharp drop in cognition and memory etc etc (lots more symptoms all at once) and got diagnosed. I refused all meds except a pregnisone burst and started supplements. Took 6 months to improve to a functioning state where I get out of bed and walk without feeling tipsy. Fast forward, about two ago (one year after the big episode) I started having slowly increasing symptoms. It was slow so I did more research, added a couple more supplements, got more rest, more fluids etc and had a few weeks where I thought I was getting better. Then started to decline slowly over that next year (2 yrs ago to about 8 months ago). Finally about 8 months ago I realized I was getting really bad, noticed my feet were numb up to just below my knees, I was walking really funny, and memory was crap (could not remember someone's name even after asking 5 times), etc etc, so I stepped up the supplements even more (many of them are natural anti-chlamydials although I did not know about CPN at the time) and found the Wheldon protocol.

Ok I got off track in this post with explaining my history again. Back to my feet. Basically I never had real pain or burning, only numbness. Well they would start to burn if I walked 15+km but I thought that was normal for anyone my age. Even with the first attempt at antibiotics where I had horrible pseudo-porphyria, my feet started to tingle a bit, which I took as a sign that the antibiotics were working (hence why I took more and faster), but no real pain unless I walked long distances. It is during the second antibiotic attempt (started ~2 mos ago) that my feet started to really hurt/burn. I have a daily log and looking back, I did my 3 pill Flagyl pulse on Aug 22-23. I noted a little foot pain a couple of days prior to that, like a tickle pain. Again I thought it was sensations coming back - a good thing. Then after the flagyl, OMG my feet became on fire, especially at night. But they would burn at 100 yards and then still burn when sitting, propped up, anywhere and everywhere. I would have to go into the shower and wet them down 8 times a night to try to cool them off. I put on ice packs some nights. I had to take a half a vicodin to sleep (I never ever take pain meds). Each night it got worse and worse and it started earlier in the day, and I started to feel it in the morning as well. Some days, I would get a glimpse of improvement, like I would think, "I think I have more feeling in my calves", or "I think my numbness has receded down to just above my ankles." But the burning pain at night would cloud my judgement and I would fear my MS was getting so much worse, and the antibiotics were not doing anything. I would get depressed and think, "I won't be able to walk in about 2 months, and will probably die within a year." Boy the depression that comes with the toxic die off is hard incredible and difficult to separate out sometimes.

Man, I'm off topic again. Back to feet. So looking back at my daily log, Aug 30 thru Sept 3rd was the worst. On Sept 3rd, I wrote, "can't tell if I am improving or declining. Should I keep taking abx? What choice do I have?" Then on Sept 5th I wrote, "I think I can feel the floor with my feet. I think I can feel the inside of my shoes. Not all the time, but like for a few hours every day." Sept 6th wrote, "Still sig pain in feet but not as bad. 1 Tylenol takes mostly away. I think I am really improving in my foot sensations." Then Sept 7th I wrote, "Really bad day. No energy at all. Can't walk. Can't lift arms. Can't lift legs. But feet not burning too bad."

So I am starting to see a pattern. Now I'll describe my legs and fasiculations that have gotten me down the last two days. Well let me back track a little. Even though I have these improvements, that I can't really recognize in real life because of my brain fog, but I can see when I review my daily log... the overall seems to still be generally downward, I mean if I look at my lifestyle. Like I feel I have to make more and more adjustments to be able to function because the big 4(balance, walking, mentation/cognition and memory). The things that really affect my lifestyle every moment of the day, continue to be on a general downward trend over these last 4 months. Picture a graph with a jagged line that slopes generally downward across time. Some days a tiny bit better. An occasional up tic that goes immediately back down, like the day my brain was that of a 20 year old (man, that day keeps me going), but all in all a downward trend for the big 4.

The fasiculations in my butt and legs. Had them some 3 years ago with the big attack. And looking back, had them from time to time over the last few decades. I always thought it was dehydration, tire/overwork, low calcium., but they were rare. And kind of fun and felt neat. The medical professional in me liked to try to picture the neuromuscular junction and figure out what was going on. I know I am sick in a different way than just MS, haha. Gotta have humor. Anyway, the fasiculations would be one small muscle group in my butt or thigh that would jump around for about 10 minutes and then stop. During the big attack 3 years ago, I had fasiculations and full on cramps that lasted for days. But in the 6 months of that recovery they went away and have become rare again. So I now associate them with an "attack" or worsening MS.

The day after I wrote the first post of this stream, where I mentioned I had not had fasiculations in a long time... that night, my butt and legs jumped around for hours. They twitched until I just happened to fall asleep while it was still going on. Yesterday depression sets in. Is my MS getting worse and in a few months I won't be able to walk? Is this toxic die off causing the mis-firings of my nerves and I need more moppers, or maybe to back off on antibiotics. Or is this what happens when nerves start to repair themselves, as if the impulses are trying to figure how to make it to the end of the line... brain to feet.

I analyze it to death. From my medical background I know there are reflex arcs in the lower extremities where a sensation goes from the a place like the feet, to the spinal cord then arcs back down as movement back into the lower extremity. Normally the brain sees the impulse coming in and says, that's nothing and squelches the movement output. But in spinal cord injury patients, where the neural tract from the brain to spine is severed, they get these uncontrollable and painful spasms in their lower extremities from the reflex arcs that is not damped by the brain. Thinking about this, I get really scared. Yikes. Spasms and fasiculations are a sign of worsening nerve damage in the tracts from the brain to the spinal cord. I think to myself, I must be getting worse.

But then I remember my feet, and what happened just a couple of weeks ago (actually still resolving). And how I had the burning pain (by the way my toes would get beet red when I had the pain - and over the week that the pain has been resolving, I noticed the redness is less and less high up into my feet. Now, when I feel the pain, its just about half of my toes that are red). But I remember how the pain got so much worse, the worse I have ever felt. For a few days there I was crying at night it hurt so bad. But now, as the pain subsides and is less and less each day, my sensations in my feet seem to be coming back and improving.

Man, off topic again... so butt and thighs have been jumping like jumping beans the last two days, yesterday morning, last night, this morning (pretty bad - wasn't sure i could even stand up they were twitching so badly). As soon as I stood, it seemed to go away. Now it is back while I am sitting here typing. So today is worst yet. I have never had fasiculations while sitting. So I think they are getting worse, probably happening all the time today, but while I am walking, so many other muscles are firing that I don't notice the twitching while walking.

But this morning I noticed the pattern. Although I am having the increased fasiculations today, I also think I am walking a bit better today. I am not having to think so hard to involuntarily move my voluntary muscles, to lift my legs and place my feet... if that makes sense. I am tired overall today, in general. makes sense if I have been fasiculationing/twitching for the last 48 hours to be tired. But my legs don't feel as tired as they did just a few days ago. I can lift them a little easier and a little (ever so little), less robot like.

So I am noticing this pattern, that when I make these big improvements (I really wouldn't call them "BIG" - but bigger than the jagged line of the graph), I think I get emotionally tired and other areas, other symptoms suffer a bit until its their turn. My memory has been in the toilet more than usual lately. But I might be on the tip of what Livingontheice described in their 7th month. The next week or so will tell.

I did not take Doxy this morning, only the Roxi, And I am holding off on a second Flagyl pulse until next week. I am just too tired to do it. I signed up for a group hike this Saturday (2.5 days away) that is 11km but pretty flat. I am off the Doxy for 1) the hike will be in the sun and I don't want skin lesions and 2) I am hoping taking a few days off will give me a bit more energy. There is something in my brain this morning that is telling me I need to walk more these next few days to help those nerve impulses find the correct paths to my feet... if that makes any sense at all. And if I walk, I will improve faster. Just a gut feeling. And I have to overcome the general fatigue I feel to do that, hence the break from Doxy for a few days.

I hope this helps someone. Although I was super depressed this morning lying in bed feeling my butt and legs bounce around like jumping beans, now a few hours later.. after I have journaled this and bounced it off of someone (basically myself) I feel incredibly hopeful and like I am turning a corner towards recovery. This day has been one of my lowest lows and now one of my highest highs. I am hopeful that I might soon be at the stage where I can slow down with the antibiotics, recover at a more sane pace and have fewer toxic die off reactions. Afterall, if the fasiculations are in fact my leg coordination and strength improving and my walking improves in the few days... that's one of the big 4 and a true sign that I am on the right path. Hallelujah.

PS... only word I looked up spelling while writing this post was hallelujah. Maybe mentation and memory are improving today too. :)

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

Toliveagain, I hear what you say about the shortage of member postings. I have been pretty delinquent in that regard but read all posts first thing in the morning. I just finished your latest and was comparing all of your different symptoms to the ones that I have been experiencing for 25 years! I'm not nearly the writer you are and in fact probably haven't written anything as long as your last post in my whole life but read it all.

Actually, my first symptom was tingling in my feet that would come and go (1995) and here it is 25 years later and that tingling soon turned into severe burning, constant pain to this very moment. With a list of other problems that have mostly gotten worse, I too hope that the abx protocol will soon turn this battle around. I just finished my 12 pulse and have received another supply of abx. Having lost my ability to walk about the same time I started the protocol that put me into a motorized wheelchair and unable to do any exercise. Edema in both legs now from my knees to all my toes. Also, as other members know, I live alone.

Anyway, I'm reading yours and all other posts, so keep'em coming!

Chris

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

Hi Chris,

It is so nice to hear from you. Thank you for reading and responding. Although it is reassuring to hear there is someone else out there who has experienced similar symptoms, I am saddened and sorry to hear it does not sound like those symptoms are getting better. I am new to the site and protocol and I do not know your story. 12 pulses so far? Do you think the antibiotics are helping? Are other areas improving? Sending strength and healthy vibes your way.

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

Dear Chris

Sonal has not improved either. She has been having some setbacks although earlier this year March/April she seemed to be a tiny weeny bit hardly noticeable but better certainly not declining.

But since then several setbacks -- shingles attack then the lockdown meant her yoga teacher and massage woman were not coming. Then about 6 weeks ago she fell and her right knee became badly swollen. She has overcome all this but taken a f ew months off pulses but comtinuing with Doxi Roxi.

I feel that both in Sonal's case and perhaps yours the protocol was started when the MS had set in very badly. So maybe it will take another whole year of dogged adherence for some really positive signs. Initially in the first six months Sonal did experience some very small signs of improvement. But more recently her right hand has also got badly affected, which was not the case when she started the protocol. I am desperate for some positive signs, but still hoping for a miracle at the end of this tunnel.

Take care and good to hear from you.

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 Tolive

if i remember right, Katman who got cured of MS did right once that she felt her leg was on fire just a few months before the real improvements started coming. So maybe -- Sarah and David would know better -- you are on the right path. Carry on. And have fun on your 11 km hike! 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.

Hello Toliveagain, you always seem to come along and post reams when I am busy doing something else. Anyway, I am glad to see that you are still here, Last night I realised that I had forgotten to mention the bone wringing pain I got when I had started pulsing metronidazole. It might be relevant to quite a few people. I didn't get it at first but it started certainly on the third pulse and showed signs of starting on the second. I would end up sitting in the kitchen, leaning against the Aga, with tears streaming down my face. It would tend to leave off in the evening but return full force by seven in the morning. That really was my big clearing out because I was never troubled again with 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.

Good morning Neena & Sarah and everyone else,

You both are so right. Thank you for your input. In this update you will see that you are so right!!! The bad symptoms can be a precursor to improvements.

The last novel I posted (haha) was Sept 10 (6 days ago). Oh how a week can change things. So here comes another novel...

On Sept 10th I was so discouraged. My symptoms seemed to be getting worse and worse over time. I was not sure if it was toxic die off or my MS continuing to get worse. Up until a few days ago, my trajectory on antibiotics had been pretty distinctly a jagged down-sloping line with these rare and random weird miraculous 3-4 hour chunks of time where I felt like I was 20 again. Very rare though. The miraculous times did give me a little hope that I was improving, but since they were rare (only happened 3 times in 4 months) and so transient, I began to doubt whether they had happened at all. All in all the last 4 months have been a continued downward slope with the last couple of weeks being the worst and most discouraging. I was depressed and anxious.

I had increased most of my supplements including NAC (that's a foreshadow) thinking the antibiotics were killing the bacteria, and the supplements were clearing, supporting and rebuilding my system. I thought that if I was feeling poor, I needed more supplements, more NAC. Hence, by last week, I had been taking NAC at 2400mg/d for a couple of weeks (had increased it considerably during all the burning feet btw).

Anyway, on the 10th... like I do when I get depressed, I looked for comfort. I had not read all of the "Patient Stories" on this site so did that, looking for comfort in others' successes. And OMG did I find it!! Red Rosecea's story was like a lightening bolt for me on many levels. # one, I now understand my increased acne is just die off, and not me taking too much B12 or biotin. Ican equate it to the severity of the die off reactions (as well as my NAC intake). I can start taking B12 and biotin again. And # two, NAC!! NAC!! NAC!! His toxic die off symptoms worsened when he increased NAC and got better when he decreased NAC!! His story showed me I can control the die off reactions with my NAC intake. I have control!

Over the 4 months, I have increased and decreased my NAC but had not equated the good days and bad days to NAC. I was trying to link the good/bad days to the antibiotics and they didn't correlate. I was confused. Looking back over my daily symptom log, I am now able to see I had much worse symptoms when I was on 2400mg NAC vs 600mg. I went back and read more about NAC and how it works.

And then, just to experiment, I stopped my NAC to test my hypothesis. Actually on Sept 10th I stopped everything; antibiotics, NAC, all supplements except vitamins. I wanted to see what this protocol has actually done to me.

Within 3 days I was feeling like my old self of over 4 years ago. The way I did prior to the big MS attack where I was diagnosed. Except for memory and cognition, those were still slow, but those still got a little better over those 3 days, and have continued to improve as I have been off of NAC for 6 days now. I started antibiotics back up on day 3, Sept 13.

Just a few days off antibiotics and NAC and I am walking without tripping. My energy is way up. My balance; I only get off balance if I turn really fast, maybe 3 times a day instead of 30. I don't have to think about every step as I go down the stairs, or even walking on the sidewalk for that matter. It was all toxic die off!! Not my MS worsening. My MS is so much better!!

Now a week into my "NO NAC", I am thinking clearer... not the debater I used to be, but once again yesterday, I had a friend commented that I was funnier than usual. In the 4 months, and just the last week before I stopped NAC, my cognition had digressed to the point that I seemed to have this crazy bad ADHD and couldn't follow a thought or do anything I wanted to do more than 3 mins without being distracted. I couldn't do yoga without getting up in the middle of each and every move to "do something" that seemed important at the time, but wasn't. I COULD NOT meditate at all. I could not get anything done because as I would walk into the room and see something else to do. But before I could start that, I would see something else, and something else. I couldn't get anything done. I was losing my mind. And the insomnia. Even with 6mg melatoinin, and clemestine, meditation sounds, breathing exercises and sometimes a half a vicodin (for foot pain). Still couldn't shut off my brain to go to sleep.

Then, OMG, 3 days off of NAC and... I am so much improved. I think to myself, I can live like this!!!! I can actually live like this. If I were to stop antibiotics right now, I would be OK. TOLIVEAGAIN is true!!! I do not have to be afraid of being committed into a 24 hour care home. OMG, my improvements are profound. I just didn't see them because of all the toxic die off, but I am getting better, so much better, and so fast!!!

And I think what Neena and Sarah said above are also true. How Neena described Katman getting better after her leg was on fire. And most of the patient stories seem to indicate the same. It seems like people turn a corner around the 7 month mark. 

I am noticing that is the way it is for me, but at 4 months because I pushed it really hard... not recommended. It has been complete and utter hell. And I think Neena and Sarah are right. The really tough symptoms, possibly even things that you did not feel with the original MS (like burning feet) happen just before the dawn.

Now I know!!! Now I know that there is life again after getting through those periods. Maybe I would have noticed the improvements this week even if I did not come off the NAC. Idk, but so glad I finally see some progress. And ready to keep going.

Also I read some of the other "Patient Stories" and was intrigued by Michele's alopecia resolving, and her hair growing back darker (less gray). One of the multitude of symptoms I have had over the last couple of years, that got a whole lot worse with antibiotics, was hair loss and my hair turning white. I have gone from a salt and pepper to completely white in just the last 2 months. And my hair is (was) falling out literally by the handfuls. After every shower the drain is full of hair, my brush is full and the hair left on my head is thin. In the last 6 days off of NAC, my brush and shower drain have been empty and I notice my hair is darker.

Ok, so let me keep going with what has happened over the last 6 days. Yes, there is more. Three days after stopping NAC, and feeling so incredibly good, what do I do??? You know me! I dive in full force. I started back up with Doxy/Roxi AND decide to do a flagyl pulse all at once, but without the NAC or other supplements for a couple more days.

Three days ago, while off everything except vitamins, I felt so good and happy and hopeful that in the morning I took Roxi/Doxy and a flagyl. Felt great all day. That was the third day off everything except I took antibiotics that day. That night I took my second flagyl (only taking them twice a day due to past reactions) and within 15 mins I got the worst, tearing heartburn of my life. I am a nurse and I have had GERD in the past but this felt more like someone had reached in and was ripping my esophagus through my chest. I waited a few hours and took antacids. Didn't want to affect of the antacids to denature the flagyl. Antacids didn't help. Was awake most of the night, tossing and turning with pain. By morning the pain was even worse. I almost went to the ER. I was scared. But then as soon as I drank some tea, I realized eating and drinking set off the spasms even worse (I had to double over to catch my breath), and I knew it was falgyl and food related, not something serious. 

I didn't eat or drink the entire day except to take my am and pm flagyl. I know!!! Who would do that? Who would take more flagyl with such pain? But I was feeling so much better overall, in every other aspect of my health, and determined to get on with the protocol now that I had proof I am improving. I bought some peppermint and popped one of those every chance I got and they helped a little. After 4 flagyl pills, each pill 12 hours apart, I couldn't take any more and stopped. I am considering Tini instead of flagyl.

That was 2 days ago. Today my stomach is much better with minor cramps with food. I am still taking Doxy/Roxi, been back on for the last 3 days and will start some supplements tonight and tomorrow morning. I plan on only doing 600mg of NAC to see if I can keep the die off reactions low and keep some of these improvements I have gained.

Now, after seeing such improvement, I do not feel the need to push things as fast as I was. Now that I can see that the antibiotic are working and I am improving and I have gotten better past the point of possibly needing 24 hour care, I can take it at a normal pace. No 24 hour care for me!! I am convinced the weird die off reactions I have had (like burning feet or itching stomach) can be managed by decreasing NAC when they get too strong. And now I can take this protocol at a more realistic pace where I can enjoy some of the improvements while still working on killing the bacteria.

Thank you all for being supportive and listening to my story. I will keep you updated.

TOLIVEAGAIN!!!!!!! Fist pump!

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

Dear Toliveagain. I am very glad that you have now decided to take the protocol at a more reasonable pace. After all, although I took it for four years in total, it was only one year full time, then three years intermittent, which by the fourth year, meant taking abx about two weeks every three months.

So then I stopped and have had no relapses since. I never managed to become exactly as I was before, able to walk for miles or cycle sixty or seventy miles a day, but I got back what I most wanted, which was to be able to draw and paint once more. In fact I was only thinking yesterday that every canvas standing in my room, about seventeen measuring at least three feet by four or five, have been done since I recovered.

Now I want to warn you about something that never occurred to me until earlier this year.  Beware of catching certain viruses, especially covid 19.  I did and ended up in hospital for a couple of months, usable to walk.

The respiratory part wasn't so bad but it affected me in the brain. I have no memory of going to hospital but when I awoke four days later, there was David come to visit. I had a full mri scan that weekend and there were absolutely no new lesions, showing that the MS had not come back. 

However what you need to be careful of is that once  you have an MS diagnosis, the disease is considered incurable and you will be treated like that if you end up in hospital. The papers given to me on my release were full of me being confused and also that I had reached my new baseline so no physio was recommended.

So, please Toliveagain, try as hard as you can to avoid hospitals. It was alright for me because I was married to David, a doctor who doesn't think much of modern medical practice.

Please take care: this lis why I wanted you bit to rush at getting better.

Sarah  (who seems to have taken up novel writing as well!)

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.

Oh my word Sarah!!

2 months in hospital! What a mare. Happy to hear you're well again with no lasting after effects.

Made me think then...what if any of us on protocol at mo ( Im still on first year intermittant only since end of summer) end up with dreaded Miss Corona. Do we still take at least the antibiotics plus tini pulses? And especially if one ends up in hospital...do we/ loved ones  smuggle our meds in or is ok then to have to accept a break in meds routine til ones back home to restart either the full or intermediate way asap again?

Just a Q to make sure I'm prepped for any eventuality.

Kiki

Kiki, I am very glad that I didn't need to think about that. I think that if I was over a year, I might have risked it because I didn't know that I would be kept in that long at first. Once the time really started ticking by I would have resorted to smuggling, I think.. As it was I got David to smuggle me in some supplements, specifically D3 and B12. Oh, and some melatonin because the ward could be very noisy at night

I have been pondering why I was kept in so long. They must have known about my SPMS diagnosis from the neurology department because neither of us told them. I know that nobody believed me when I said that I didn't need any aids before coming in. Hence I now have 'confusion' to dd to my records!

Oh yes, and one Sunday afternoon another patient got up, waked over and attacked David with her walker, calling out "there, now what are you going to do now?!" Earlier she had decided that I was a racist: I just thought she was a rather volatile Italian, of which there are many in Bedford, more than any other nationality. 

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.

OMG Sarah

I didn't know you had been in hospital. For what? Hope you are better now and back to normal. Are you back to your normal routine of painting and more painting?

I had written a long post to Chris earlier which you may have read. Sonal not doing well at all although continuing with Roxi Doxi. She is now getting ready forr her 13th pulse (I think it is 13th) and this time she wants to do with TINI rather than Met.

Let us see how it goes. But it is very very hard to need help to go anywhere from your bed. But she is very brave. And my son is taking care of her plus his work.

Will let you know how the pulse goes. I think she plans to start in coming week. Take care you and David. Would David take an online consultation with Sonal and Amit? Just wondering.

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, I caught coving 19 in the very early days. I caught if from David who caught if from someone in our little supermarket. The respiratory symptoms are long gone but ìt affected me in the head..I woke up in hospital unable to walk with a total lack of balance.

An main showed that my MS was still tonally inactive, which I think confused the doctor's, who had it down as an incurable disease.

Neena, I still have someway to go until I am as good as the end of last year, but David gives me physio three or four times a day, which is an enormous help.

The hospital say I have reached .y new baseline and I àm confused.  I beg to differ: the one and only time that I was confused is two or three days in the middle of January and any talk of new baselines is balderdash!

 

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

There are many articles now by experts who warn that post Covid patients need to take it very easy plus lot of fluid and supplements and plenty of rest. So do take care. We have a friend 60 years old, who had covid recovered at home, tested negative had good antibodies, but had a relapse of sorts -- mnot covid again -- but lot of fatigue even temperature and malaise. He is better now. Doctors told him not to overdo with exercise, just walking, but no rigorous exercise. Another cousin who also recovered at home under doctor's care -- he was also given some steroids as had comorbidies -- told me he took two months to come back to near normal.

So do take very good care of yourself. And of course you have a doctor husband.

This Covid can affect different people differently attacking various organs of the body, not only lungs and heart.

Sonal plans to start her first Tini pulse tomorrow. Hope she feels better after that and begins to come back to where she was in March-April. Since then she has been going down with several bad incidents -- shingles, then a fall which left her with a swollen painful knee -- and then the worry of covid around the city and so on.

But hopefully better days ahead. Mr granddaughter Aanya will be studying psychology at UCL (London) and is getting ready to leave 10 October. I am so anxious because of this damn corona.

Do take care. So many depend on you! and David, of course.

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.

Hello Sarah,

And thank you for your "novel". I enjoy kindred spirits. :)

I agree with you and David about modern medicine. I was deep in it for over 30 years in the US and came to realize it is a money making machine set on keeping people unhealthy so they continue to be caught up in the machine.

And thank you for the advice on how to handle the medical establishment once you get diagnosed, if one were to come down with something else like COVID. I am so sorry you had to deal with that Sarah, and glad you are over it!!!

Sadly, I had seen this happen to others, a drop in options after a diagnosis, and I was likewise advised to keep my son's learning disability diagnosis out of his school record for the same reasons. The child psychologist said, only document the skills he is "temporarily" behind in. That won't affect his future as all kids grow and mature. But never list an actual diagnosis because it is assumed people do not grow out of diagnoses. It will follow him forever. Even if he does grow out of it. Sage advice.

Luckily, because I was in the "biz", I was able to get the tests I needed, and MD evaluations from friends under the table. While getting the tests and evals, I only let each of my doctor friends know a tiny bit. I worked in an academic hospital so I would cut the name off of my MRI and asked a friend, "What do you see? Is it MS," as if it was an academic exercise or a project I was working on. So I don't think anyone who really knew me had more than a mild suspicion. To this day there is no mention of MS (or anything associated with it) in my medical record. And I intend to keep it that way.... because soon I will be free of it anyway.

As a matter of fact, I was so good at camouflage that none of my friends knew about it until just two weeks when I told 2 of them. I thought it was MS but it is turning out to be a bacterial infection and I am taking antibiotics to clear it.

I was able to hide the symptoms over the years pretty well. During my divorce I could say I was tired and depressed. Well, I was... but I could blame staying in beds for a couple of days on something other than MS. I moved to Thailand 2 years ago and so communication with close friends in the US was through messages, calls and short video chats. I could deflect easily. And then COVID hit at a very opportune time for me and allowed me to withdraw a bit more without people becoming suspicious.

At times I am able to muster enough energy to look half way normal at a public event and then after, I come home and crash for days to recover. A few friends here in Thailand are close enough that they would comment, "you look tired" etc. But in Thailand it is easy to say, "I had stomach issues last night", "I have to work" (even though I am retired and have absolutely nothing to do), "my knee is bothering me so I can't go on the hike". One time when I was slurring my words, I told people I had just come from a friend's house where we had a few glasses of wine and then laughed. No one questioned the fact that I don't like alcohol and no one has ever seen me drink... how I have ALWAYS been the designated driver because I do not drink alcohol at all. It is amazing how people do not put 2 and 2 together... amazing, but lucky for me.

As for the speed in which I am taking the protocol... I know my personality and even though I say I will take it slower, I know I will push it again soon. The break from antibiotics I took about 10 days ago was so nice. So nice, so nice. Did I say it was soooooo nice? OMG, it was so nice. I forgot what it felt like to be semi-normal without the multitude of toxic die off reactions affecting every single thing I think and say and do. It was so nice to get a break from hell.

For the last 4 months I have had, and now that I am back on antibiotics, continue to have, just about every symptom that anyone has documented related to MS, Fibromyalgia, Rosacia, etc. Hence I believe this confirms I have a huge bacterial load that has infiltrated just about every system in my body: skin, hair, liver, digestion, brain, nerves, muscles, hearing, vision... everything. The symptoms prior to antibiotics, as well as the toxic die off reactions were, and are, nearly debilitating. Actually, I should not minimize it. They ARE debilitating to the point there are many days I can barely function to get food and water.

To tell the truth, after 4 months of this, I am still really tired of the reactions and long for more "break from hell" like the week I had just recently. But!!! The fact that I did have such a semi-normal, (with few aches and pains, able to walk with balance, and less brain fog), week is incredibly motivating for me as well. I have never shied away from pain or hard work if I believe the end result is valuable. And I believe I have a huge bacterial load that can easily overtake me if I back off!!! So I have to keep fighting it. Knowing me, and my body, and how much I can take... even though the last week was a breath of fresh air, and my first response is "Now I can slow down", I know I will probably only take it a little slower for about 2 weeks and then when I get re-used to functioning (or not functioning - haha) with the toxic die off reactions, I will find the energy to jump in head first again for another 2-3 or 4 months hell. Afterall, even though I said I would take it slow from now on, I started back on antibiotics with all three... Roxi/Doxy AND Flagyl.

Not exactly a slow start. I will keep you posted.

ToLiveAgain!!!

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

Sorry to post again Dear Sarah, so it was Covid? I thought you and David both had an earlier mild attack and recovered at home. Two months is a long time in hospital. Are they sure it was this damned virus?

Do do keep safe and well.

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, I wasn't even tested for it, but with the continuous cough, high temperature and loss of taste and smell, I guess that it was this. David went down with it first then I did. Several people at our local supermarket also had it.  Bedford at first was one of the worst affected places in the UK but not now.

When I first told you about this, I was  in hospital but just kept quiet about it. Shows I wasn't confused!

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.

Hi Sarah,

I was so wrapped up in my own progress that I neglected to recognize what you have recently gone through. Two months in hospital is horrible. It must have been difficult. And then to get the added diagnosis that isn't true. I am sorry you were ill and had to deal with that. What is your next step? Would it be worth it to get a psych evaluation to prove (in your medical record) that any confusion was not true or at least only temporary?

I am glad you are home and feeling better. I am curious, even though the MRI showed no new lesions, and you had all the symptoms of CV19, so that was obviously the cause of your symptoms, did you try a round of anti-CPN antibiotics? Just to hedge your bets?

For me, I am assuming I will have to take antibiotics for the rest of my life...

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

Neena and Toliveagain, I wasn't diagnosed as having had this damned virus but the symptoms we both had just before hand seemed identical. What I have read since àbout the way it affects some people in the brain makes it even more likely. Anyway, to be made to spend nearly two months in hospital without your MS showing any new lesions and still showing as completely inactive, some virus must have caused it. Ŕhabdomyolitis is normally caused by a virus so this one seems the most likely at the moment.

I'm glad to be out and benefitting from David-s intense physiio. I am taking it easy, which doesn't come naturally and taking lots of supplements and liquids. I did wonder if I should take a new cours of abx but David said no because there is no cpn, so you don't need it. Physio every day so making me much better and stronger: far more than I got in hospital. I certainly haven't reached my new baseline as I was told in my notes.

I don't care because any doctor I might need to see in the future will just laugh at the high baseline which was set.

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.

Hi Sarah,

That is such a great way to view the situation. You are truly a warrior and an inspiration to us all. Keep us updated on your progress.

You are so lucky to have David as your personal physio :). I currently live in Thailand and get massages ($6 USD) 3 times a week and sometimes more. Thai massages involve very very deep massage (sometimes painful) as well as a lot of twisting and physio-like movements. I am so appreciative to be here in Thailand. Sadly, for other reasons, I will be moving to Portugal in 5 weeks.  Massages there are not nearly as intense and cost $40-70 USD. I will not be able to partake.

I am anxious about leaving my massage haven. I have purchased a TENS unit and portable fascial massager unit to take with. I read that Dr. Wald (cured MS with diet) used a TENS unit religiously.

My guess is there is a component of needing nerve/muscle impulse (either active or passive) in the rebuilding phase. Or maybe not "needing" that, but it hastens recovery.

Wishing you a speedy recover from this latest encounter with the "beast". <3 <3 <3

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

BTW, so much for my "taking it slow". I am 2 days into my second flagyl pulse after taking that break from all antibiotics about 3 weeks ago. It is my 5th flagyl pulse since starting the protocol late April (5 months). My last flagyl (took for only 3 days then could not handle the die off) was 15 days ago. I am 2 days into this one and I feel like crap for a couple of hours after the Flagyl, but otherwise doing much better this time. Was pretty tired the last 2 days, but woke up energized today.

I am so grateful to David and Stratton and others... and Sarah and others who came before me and logged their experiences. This is working!!!!! I am going to get my life back!!  As I progress and feel better, I have stronger and stronger feelings of wanting to get the word out. I am starting to consider writing a book, or doing a vlog or something. This isn't just about me. Others need to know!

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