8 Nov 2020
Author
Sarah
Title

Everyone well?

Body

It's been rather quiet lately so I hope everyone is getting better, which is after all, the reason for the site.

I am a bit behind with replying to messages and emails, so I apologise for this

Sarah

Comments

Yes, It has been very quiet lately! I'm certainly guilty of reading but not posting so my apologies :)  Anyway, I start my 15 pulse today and continue to be hopeful for some of my mobility to begin to return. Your post to Neena about remyelination and your return to painting  was encouraging.

I hope you, David, Jan, Neena, Sonal, Tufty, Lizzie, Mac, Toliveagain and everyone else, are hanging in there in these chaotic times!

Chris

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

I hope so as well Chris. I don't know why my ability to paint returned so quickly. My ex-neuro would no doubt say that you never know what is going to happen with this disease. Maybe true but until this year when I got covid in the head, I never had another downturn. This time my scan showed my MS was still inactive and now I am very nearly better.

The moral of the story is, stear clean of viruses, and wear your mask!

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 Everyone,

I am still not sure how to use this site. I was thinking of doing updates in the blog section but seems like the last entry there was 2018. So I am posting here in the forum section.... and since Sarah asked how everyone was doing...

I am almost at month 7 on the protocol, or rather my version of the protocol. If you remember I started hot and heavy and found myself in a horrible psuedo porphyria state about 2 months in (after 2 flagyl pulses and double doses of Doxy). I had to take a short break and started back up a little slower about a week later. Since then it has been a rocky road. Some days good, some days crying in bed for 12 hours.

I have been taking Doxy 100mg/Roxi 150mg BID (twice a day) for the most part. Every now and then I get feeling really sick and I will drop a few doses of Doxy (seems to be the culprit). I am taking about 15 supplements as well and eating healthy and sleeping better. I have looked back through my log and I have taken 6 Flagyl pulses in the 7 months since I started. 2 were in the first month and a half and brought on the porphyria. Then a month with no flagyl, then since late August, 4 more pulses (1 in late August, 2 in Sept, skipped Oct because was moving, just finished one in Nov). So I am still doing the protocol a bit accelerated.

I am finding I can only take flagyl for 3 days (sometimes 4) and then I get the most horrendous heartburn and esophageal spasms. I have some Tini. I might try that next pulse?

Also looking back over my log, I notice my MS episodes seem to happen about every 10 days or so, last for a week. Then I have 2-3 maybe 4 good days. During these episodes, I lose my cognition (incredibly difficult brain fog). I word search and even slur words occasionally. My memory in the toilet. Sometimes headaches and balance is way off. I walk stiff and robot-like and have significant fatigue. My feet with burning pain and some mild spasms in my calves. My acne gets horrible, and I get depressed.

I am bummed that these episodes seem to be happening quite frequently, more frequently then prior to antibiotics. I still cannot tell if the episodes are my MS getting worse/more frequent, or if this is toxic die off that just seems to happen episodically.

I think I am finding that the good times in between these episodes are better, clearer, stronger as time progresses. But to tell the truth, my memory is so bad that I can't tell if that is really true or if it is what I want to be true. Looking back over my log, the language I use for the good times seems to be pretty consistent and not very encouraging as being better.

Like Sarah's recent bout with a virus, I recently caught a bit of a cold. I am pretty positive it wasn't covid but just a regular flu virus, but it sent me into an "episode" that lasted about a week with pretty severe symptoms. I am just starting to recover from that episode and walking a little better, thinking a little clearer, and I am not as depressed today.

I am a little discouraged that it has been 7 months and I feel I might not be any better than when I started. I don't know. I honestly cannot tell, even when reviewing my logs. There are so many up's and down's. Overall, I think the episodes are almost as severe as they were pre antibiotics, even worse. And they are definitely much more frequent - almost every other week. But for some reason, in my soul, I feel like they are toxic die off. And although my symptoms are worse and more frequent, I have this "feeling" I am getting better. But maybe it is a wishful feeling?

I have tried moppers from time to time but with little improvement and they are difficult to schedule in the scheme of the antibiotics and supplements and they mess with my bowels so much. The fact that I do not get much relief from moppers scares me. Does that mean the symptoms are not toxic die off and in fact worsen MS? Every time I get discouraged, I just think to myself, "what other choice do I have" and I continue taking the antibiotics.

I moved from Thailand to Portugal last week, in search of cleaner air and cleaner water. I brought a year's worth of antibiotics with me. The move was of course stressful and it threw me into an episode. I don't know, maybe I am too hard on myself and expecting too much too fast. I do have to say that when I am not in the throws of a deep "episode", and I am feeling happy, I do have this internal deep sense that this is working.

Is 7 months too soon to expect results?

Did anyone else have a course like this, where it seemed you had worse symptoms before you got better? I have read some of the patient stories and each one seems to have something similar, like worsening acne as die off before Rosacia got better, and the burning pain of nerve regeneration prior to sensations and functioning coming back. I am wondering if the recent worsening of memory and headaches are neural pathways rebuilding.

I do feel like a two year old. When a child is leaning to walk and reason, they often walk robot-like and they make weird connections with thoughts and ideas. They don't seem to remember things ad need to be told multiple times for it to sink it. I am wondering if the symptoms I am experiencing is my body re-learning things???

Just needing some encouragement...

When did you start to notice improvements and what did those improvements look like?

 

 

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

ToLiveAgain - To use the Blog, you just start your OWN! :-)
Choose 'Blogs' from the menu at the top. Once the page loads, choose 'Create New Blog Entry'.
That starts your own personal blogging thread and then people won't have to hunt throughout the site for sporadic posts on miscellaneous threads.

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

Isola dei Poppins, from Confingo 14Hello Toliveagain, here is some more agony that ends up as an improvement:

Never having had much in the way of pain in my childfree life, suddenly after my third pulse, about seven months in and in February, often the coldest month, I was inflicted with the most agonising pain in my right arm. It moved around from shoulder to fingertips, would sometimes appear to be going only to return as bad as ever. It would ease off at night, only to return at seven in the morning. 

This lasted for about three weeks, the third being less agonising, then it went, never to return.

I returned to my life of no pains apart from menstrual ones, but with the addition of being able to use my right arm far better than I could even three weeks previously. My arm even now is slightly weaker than my left, but not enough to bother me:

This month I am the featured artist in Confingo, a biannual literary magazine published in Manchester,  and at least half of the pictures were done since this recovery.

Isola dei Pioppi, which is actually Isola Polvese, on Lago Trasimeno, was started before my MS took a turn for the worse but I had got no further than making the canvas, marking where the horizon would be and roughing in the sky.

 I thought it would never be finished after overhearing what the neurologist said to David.

Sarah 

(How did this end up here, it should have been several posts lower!)

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,

Thank you for describing your account. Hearing similar stories brings a great deal hope, although I am saddened that you had to live through this. I am saddened anyone has to go through this. 

I realize I may be experiencing the same symptoms that you described. It sounds like the pain of regeneration (or whatever it is) lasted a few weeks for you. It has lasted 3 months so far for me. Maybe my symptoms had progressed farther and therefore my time line may be extended? For example, the burning feet lasted for almost 2 months. It is diminishing now and seems to be only in the toes and only about 50% of my awake time, and not the whole foot like it was a few weeks ago. And I can feel my feet in my shoes now. Which isn't always a good thing as I now can feel when I am wearing cheap shoes that rub and cause pain. Numbness does have a positive side, haha.

I want to express my huge thanks to you and others who continue to come back here and help those of us that are wading through the process. It is indeed a tough one and the medical community hasn't a clue. Support is difficult to find. A couple of days ago was my 6 month anniversary with the protocol, have been taking antibiotics for 7 months now. I am a bit concerned that it sounds like others noticed improvements within the first few months, and I am not beginning to see improvements until month 7, but maybe people start the protocol with different bacterial loads. And higher loads just take a bit longer. In any case, I am excited that the last week has been a much better one in the areas of my deficits.

Thank you all who continue to come back to this site and give inspiration. You are God-sends that truly help others get back their lives. And to anyone doubting if the protocol is working, Stick with it a little while longer and see what happens. What do you have to lose?

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

Hi MacKintosh-

I sort of misspoke or did not get my point across. I understand there is a blog section and how to use. I was commenting on the trends, conventions and general usage of the group with this website. As I said, the last blog post was from 2018. It seems like no one goes there and my posts might be even more lost and merely float in the wind. The only activity seems to be on the forums and although it is probably the wrong place to post what I am posting... I guess I was justifying my error. I was posting here to try to get a response. But I think I might be the only one still actively on the protocol needing some encouragement.

And to update, a day can make a bit of a difference. I was able to do Flagyl 400mg twice a day for 5.5 days this round and feeling pretty good today (last pill yesterday). Although I usually feel the tough effects of Flagyl about 4-5 days after I stop, so we will see.

My question stands, what did it feel like about 7 months into the protocol for you?

I feel like the first 6 months was riddled with die off reactions. And now I feel the symptoms are kind of the same (poor cognition and memory, poor balance, uncoordinated walking). These things may be a bit better, difficult to say. But I am having the foot pain (although better than a month ago) and recently getting some headaches, ringing in ears. I have been reading about nerve regeneration and how painful it is. I read that when people have fingers reattached, the nerve regeneration pain is a horrific burning stabbing pain, which sounds alot like my feet, left hand (in past episodes I have had paralysis/weakness of my left arm).

IDK, just hoping someone will tell me that "Yes, regeneration is painful and symptoms (uncoordinated, memory, cognition) often tend to get worse while one is building new neural pathways". Anyone experience that?????

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

Well, I'm in a unique position, since I've done the protocol AND had part of my finger reattached.

Yes, when nerves are severed the repair is painful. Stabbing, shooting pain was the norm in the reattached finger for months, then infrequently for several years.

It's been ten years since I weaned off the protocol, but I'll reach back for a few thoughts on 'early days'. First, the most recent losses or problems were the ones that disappeared soonest, kind of like going back down a path you just came from. The oldest issues (in my case, a weak ankle and a crunching shoulder), were among the last things to 'fix' themselves and the pain and inflammation in them told me they were being 'worked on' by the antibiotics.

In my case, optic neuritis stole seventy percent of the vision in my left eye and damaged my depth perception. At the same time, my short term memory was going, going, gone. Those were my most recent disabilities and they are the things that came back first. Within a couple of weeks, I noticed improvement in my ability to recall a phone number as I was dialing it and my vision came back fully, though I still have a tiny bit of a depth perception issue.

A couple of months into the protocol, tons of my very long hair fell out. It was terrifying. Sarah had a similar issue and we both talked about how we could feel new, tiny hairs sprouting near our scalp. The hair (and nails and complexion) came back better than before, after clearing the cpn from those areas.

I'd had a lifelong problem with cold nose, cold toes and cold hands. One night, a couple of months in, I felt like my system was agitated. I had shooting 'pain' (like you feel when a limb has gone to sleep from lack of circulation), in my wrists, hands, legs and feet. I just sat there on the couch, marveling at whatever weirdness was going on in my body. Over the next few weeks, the cold extremities righted themselves and I've never had that issue again. My feet and hands are warm, like normal people, now. lol

One of the things we used to recite to newbies is 'it WILL get worse before it gets better'. This is no course of antibiotics that fixes your sickness in ten days. This is the battle of your lifetime. The antibiotics and the cpn are at war and it isn't pretty. A lot of cells that have been cannibalized are now releasing toxic crud into your system. It's recirculating and taxing your organs. Inflammation is occurring and making you feel lousy (and wow, the cpn hopes you quit antibiotics and call it quits). A lot of things are happening at the same time and it's frustrating and you feel you're going backwards, instead of forward. (Read David Wheldon's section on pseudo-exacerbations for a refresher on this.)

If I were you, I'd console myself right now with the thought that the abx are addressing cpn infection wherever it is you're hurting. I used to think that was a GOOD thing, even though it felt like a bad thing in the moment. And don't think you're the only, lonely one having trouble. A lot of people never post, they just read here and learn from those who DO post. Hang in there.

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

And sorry about your finger, and the fact that you had to go through this protocol. Those are both tough and you have had to be strong to get through both. And the fact that you come back here and help others is a testament to what a great caring person you are. Thank you

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

Ah, you're welcome! Sarah and I are diehard softies and really want to see everyone get healthy again. There are many others here, too, who pop in repeatedly to remind us all they're living their post-cpn lives and are available for questions or guidance.
One day, you'll be one of them.

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

hoiw lovely to hear that one day all who are in the protocol will be much much better. This is what we all want to believe and do. But I just wonder sometimes whether in Sonal's case the protocol was started when the disease had progressed to the extent that her mobility was very badly affected. She was not able to take a single step on her own. And now it is worse than when she started. She cannoy even stand with support of a walker or furniture. Some one has to fully support her.

Hoping for better days ahead.

Neena

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

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

Hi Neena,

I am certainly not an expert, but I would like to comment that I also have gotten much worse before I started to see improvements. When I started I would lose my balance every now and then, maybe 1-3 times a day. Sort of need to hold the hand rail and concentrate on the steps when going down stairs. I was starting to lose short term memory a little, but nothing that writing things in a calendar or leaving notes to myself wouldn't fix. About once a month I would have a day where the words didn't come out of my mouth the way I had intended, or I would slur a bit.

But what scared me the most is I did notice the decline was quickening, like almost by the week. I did have the feeling that I had another year or two before I would not be able to care for myself and need to be committed to a care facility.

Then I started the protocol and I just passed my 7th month anniversary. In the last few months I have gotten so incredibly WORSE. There have been times that I write myself a note, then I find it just 15 mins later and I can't figure out what I was trying to tell myself. There have been days that I lose my balance so much that I fall into walls 30+ times a day. There are days that my legs just don't work and I can't get out of bed. In the past I would have days where it felt like my legs were too weak to walk, but I would "mental" through it and get up and still be able to walk. About a month ago (while in month 6 of protocol), I had a couple of days where I couldn't mental through it. I frigging could not walk more than a few steps. I could not "will" my legs to work.

Last month was the scariest of my life!!! I could not tell if my MS was progressing exponentially fast, or if these symptoms were toxic die off. I laid in bed and cried for days. I think part of that is the depression and anxiety that is just another symptom of the bacteria die off. But, I came to terms with my mortality. I accepted the fact that this could be my MS getting worse exponentially fast and I may only have a short time left on this planet. With that came a... oh well, what do have to lose in continuing to take the antibiotics. So I continued.

I finished a flagyl pulse (number 6) about 10 days ago. This last week was probably one of the worse as far as reactions. I went into another psuedo-porphyria reaction with skin lesions and dark urine and feeling like I couldn't move a muscle and everything was so painful. If I was anywhere near the sun, even inside behind a curtain but the heat was still on me... my skin felt like it was frying and bubbling like bacon in a frying pan. My skin burned and turned red even if the sun got to me through windows.

It is now day 2 where I feel the psuedo-porphyria is subsiding, about 10 days post flagyl. And all of a sudden today, my head feels clearer than it has been in months. I don't seem to be losing my balance unless I turn too fast. Some friends at dinner last night commented that I was funny. I haven't been able to follow a conversation in months, much less contribute or even reason and add quibs. And my acne is finally starting to subside and I think I might have nice skin in the future.

Have Sonal keep going. I think my bacterial load was higher than some of the others. It seems that way as I have not started to see any real progress thus far (I would have a couple of hours here and there that felt better, but nothing substantial)... but today it feels different. It has been almost a whole 24 hours where I feel quite a bit better.

I wholeheartedly expect rough patches and physical and mental and emotional digressions with pulses and die off in the future. I expect my acne to come back again and the brain fog make it difficult to hold a conversation. But after this last pulse something has changed. I really truly in my heart think I am "overall" getting better.

I have the feeling it is going to take me longer than others here on the forum and my episodic toxic die off reactions to continue to be significant and worse than any of my MS symptoms prior to antibiotics, probably for another year. I feel like it is going to take me at least a couple of years to get to where I want to be, back to my old self before MS symptoms. But I want to convey to you (and Sonal) to not take the fact that her symptoms are getting worse as a bad sign. I did, and now I have reversed that thought as I feel I am finally starting to get better. This last toxic die off and recovery has been extreme on both ends. I was the worst I have ever been. Really really close to needing to be committed to care facility. And now, in just a few days, it is the best I have been in probably the last year. I have a long way to go, but I am hopeful. As I hope you are.

Hang in there. Those of us with a heavy bacterial load will just take longer and have deeper toxic die off reactions. But it is all moving forward towards wellness. Sending you and Sonal love and strength.

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

Dear Toliveagain

Yes Sonal is braving it every day. She just finished her third TINI pulse having done about 13 flagly pulses earlier and then taking a break from pulses for about three months while continuing with Doxy Roxi and supplements.

She has gotten worse. But the early symptoms of getting tiny weeny bit better have disappeared. Recently over last few months her right hand has also been affected badly in addition to total walking disability. She started this protocol when her disease had progressed quite a bit. That is when we came across this website etc. Yes we should all carry on hoping for better days to come.

This pandemic has also taken a toll on all I am sure . Children working from school. Sonal's massage woman stopped comeing for several months. She moved about less and got worse. But now she is back doing alternate day massages and i think Sonal is slightly better than say two months ago. But still in very bad shape physically, though mentally she is very clear and able to talk very well -- normally in fact.

Yes hand in these is what we can all do. After all this terrible affliction is not going away in a hurry or easily at all. It will be a miracle if it goes away at all. Keep safe and well and try to think positively.

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 and Tolìveagain, although my mris showed a ghastly attack on my brain, my cpn level was VERY low, so I guess it was all hiding away in my brain.

When David came home with my firstdoxycycline and told me to take two rkdoses together, I thought that tgus is never going to work, yet funnily enough it started to work nearly at once: the first thing was my fuddled thinking which cleared up, then my voice became crisp and clear again.

All the while I was working on my painting but it took about four months before I did something I felt able to show. Walking took much longer, but although I can walk downstairs, I still can't run!

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 MacKintosh, that is exactly what I needed to hear. Thank you so much for your insightful and kind words. What you have said, is exactly what I feel most of the time... like the abx are working. And all the things I am feeling... the pain and the increases in symptoms are actually good. For example, I just finished a round of Flagyl and my acne has gone crazy. I have these huge painful pustules, I mean really big ones, all over my face. They hurt and look horrible but I feel like they are the release of toxins through my skin. Anyway, thank you for the encouragement and I will keep going. You are right, this isn't a simple... take some abx and be done with it. It is a fight for your life. Thank you for reminding me!!!!

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

toliveagain - although I don't post here often now and haven't updated my blog for quite a long time, I do still check on posts from time to time.  You mention about symptoms getting worse before they start to get better.  Yes, it was always that way, with two steps forward followed by one step back.  I didn't have an easy time on the protocol, but I stuck with it. Going from memory, as it's quite a while ago now, it took me over 2 years of the continuing to get worse before things started to turn a corner and I started to see the very first glimpses of better things to come.  And there were certainly plenty of bumps along the road for me.  No, it's not simple or straightforward - but it's definitely worth persisting with.

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17&01/20-)

dear Boadicea

Yes when things get worse, which they have for Sonal, it is disheartening, especially since she has finished about 16 pulses. But she started the protocol when she was already in bad shape moibility wise. I am hoping that next year things will start looking up.

Sorry that you had to struggle so much but heartening to note there maybe light at the end of this dark tunnel. Sonal carrries on bravely as also my son who helps her with everything, besides doing his own work.

Are you still on intermittent or have you stopped meds altogether. ? I hope your are keeping well with no return of symptoms.

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 Boadicea,

Thank you so much for posting what you did. That is both exactly what I needed to hear and also a bit saddening to hear.

I am so sorry you had a difficult time with the protocol. I am sorry anyone even has to do the protocol at all. 

Your post has helped me to keep going and have hope. Thank you. 

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