5 Apr 2021
Author
toliveagain
Title

anyone out there?

Body

Hello anyone and everyone. Wondering if there is anyone out there. I am approaching my one year anniversary of being on the protocol and feeling a little alone. I will post what's happening in a reply so the whole thing will be viewable.

Comments

I am having some trouble with porphyria. I am taking 300mg Roxi, 100mg Doxy BID, NAC 300mg BID & had completed 11 pulses of flagyl (some only 2-3 days) by month 10.5. I take a bunch of supplements, all on the Wheldon list plus: Clemestine (a study said it might have anti-chlamydia properties) and Relora (Australian Magnolia Bark - anti-chlamydia), Holy basil (found to improve MS), Doxazosin (found to improve MS).

I have had problems with porphyria all along. To combat porphyria I take Cholestyramine (once a day because I don't have much and can't get more), Cholorella 100mg BID, Charcoal 1800 - 2700mg @ HS, lots of fluids. And during pulses I take Cimetadine.

My porphyria was so bad I took 10 days off of abx recently until it seemed to get better. It never completely went away but 10 days seemed like the longest I felt comfortable off abx. I didn't want my MS to get worse. So I started back up at same Roxi 300/Doxy 200/NAC 600 + supplements. Within 4 days had insomnia so bad 10mg Melatoin/25mg benadryl/warm milk/hypnosis tapes can't get me to sleep. I have skin lesions on my face, hands and chest when I have only been in diffuse sun for a few mins.

I tried a Vitamin C flush the day before yesterday. I took 1000mg Buffered powdered Vit C every 20 minutes until watery BM. It took 27,000mg to get there (drinking tons of fluids all day). The next day I felt great and lesions seemed to be clear. By evening, 24 hours after flush, I could feel porphyria coming back. Now 24 hours after that, I am back where I was prior to the vit C flush, possibly worse with worse lesions, more significant insomnia, etc.

What do I do? My next thought is to hold back on NAC to 600mg/day or maybe none at all. And to cut back on Doxy to 100mg in am only.

I feel I am going backwards. Any help is appreciated.

CAP on my own since 04/20. Roxi 300/Doxy 200/Flagyl or Tini pulses every 3-4 wks/20+ supplements adjusted monthly. Battling die off & porphyria often. First improvements noted @ 8 months.

Hi toliveagain,

I was glad to see your post because I was beginning to think the same thing. Between the constant personal battle of cpn along with the world's war with covid, I think everybody is kinda keeping their head down!

Anyway, I wish I could offer up some good advice on porphyria and any of the supplements but my knowledge is quite limited. The one thing I noticed when I backed down on NAC (from 1800mg to 600mg), my breathing and lung strength suffered. I've brought it back to 1200mg and may go back to 1800mg. The only way I seem to be able to take these supplements is to swallow them all at the same time with a few gulps of orange juice. I still take my daily doxi/roxi & tinni for pulses (finished #20 last Friday. My latest 3 treadmill attempts have been mostly failures but I'll keep trying.

Thanks for your post to me and the info on a TENS unit. I sent you a PM but I'm not sure you received it.

Stay strong, everyone!

Chris

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

Hello Toliveagain and Chris, I'm afraid that I can't be of much help here, because I was never much affected by porphyria.

I wondered why some people were so much more affected than I was but never came to an answer. I think that this is one of those questions where people are best left to experiment and hopefully find something that suits them.

So, if anyone has found an answer, please post it here!

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.

Hey, you two, you neither of you mention activated charcoal, supposed to work well for porphyria. Since I took about ten capsules a day, that is maybe why I never suffered with porphyria!

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, Thanks fpr getting back to us. I do take Charcoal. I mentioned in my long ramble that I am taking 1800-2700mg/d. The charcoal pills I get are 450mg each 4 to 8 most days. It is difficult to judge how much everyone else was taking because most people just say "6 pills" or "10 pills" or whatever. At one point I do remember someone saying their charcoal was 250mg, so I think mine are nearly double strength.

I also Take Chlorella 1000-2000mg a day. And I drink Cholestyramine resin about 5 times a week. I am running out of the cholestyramine and don't think I can get more.

That's why I was asking, "What do I try next?"

Also, and this is just a guess... no scientific backing at all. It seems from previous posts that the people who experienced porphyria may have had CPN in the liver????  So those who did not have CPN on the liver may have been spared. I don't know.

CAP on my own since 04/20. Roxi 300/Doxy 200/Flagyl or Tini pulses every 3-4 wks/20+ supplements adjusted monthly. Battling die off & porphyria often. First improvements noted @ 8 months.

Dear Sarah and all

I have been away from this site for some time as Sonal, Amit my son and her husband and both children were down with Covid. Fortunately all recovered at home with some medication from a doctor on line. Then later my spouse Naresh Khanna got Covid, also mild and now recovered.

Its been a worrisome gruesome five weeks and Delhi is simply awash with Covid with num,bers goind through the roof and no hospital beds, not even doctors on line as they are all so busy! a nightmare.

Sonal has had setbacks as you can imagine, with entire family down, her phsio not able to come. She is now almost wholly wheelchair bound. Not able to take more than a few steps at a time with support from husband.

Sarah she has now taken the protocol for two full years. Simply dont know what to do next.

Take care. How are you coping Sarah?

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.

Oh Neena, I was watching last night about how bad things are in Delhi at the moment with Covid and was thinking about Sonal and you.

I am very glad that Boadicea replied before me, because as she said, she was taking antibiotics for at least two and a half years before she started seeing any improvements. This just goes to show that some people take far longer than others to even start to get better!

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.

Neena, I forgot to say how I am, but thankyou, I am now much better than back in January.

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.

Neena-- I've been thinking about you and Sonal---hoping you both were staying safe and well.  I hope Sonal keeps going with the protocol even with the difficulties she's had.  

Sarah--Thanks for your kind words.  I won't post any pictures of my garden just yet as it's really hot and plants aren't at their best.  This coming week I will start --slowly-- putting rocks around my water tank---for me that's a task I've not had the energy for for years.  

Cheers,

Jan

56 y.o. with possible dual diagnoses that I am working to confirm this year: Ankylosing Spondylitis and Scleroderma, and minor Psoriasis.

Jan, where you live I am surprised that you can grow anything at this time of year, even though the hottest months are yet to come!

For myself, David and I both had covid very early on when it first started, caught from some Eastern Europeans in the corner shop.  

I hope that both Sonal and Neena will soon be past the worst in India, where it really does seem to be am evil disease.  I have friends in Delhi who I haven't heard from for weeks..

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.

Dear Sarah and Jan

Yes it would seem that the worst of the second wave in India has peaked earlier this month and Delhi is also much better in the sense one-third of the daily cases it notched at peak. But too many people, younger people, have died which didnt happen last year.

Sonal is continuing with her protocol, Jan i hope your medical issues have near resolved. What great news.

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.

It’s good to hear from you, Neena, as I have felt very concerned about you all, with seeing the reports of the awful Covid situation where you are. Glad to hear you are all recovering.

I continued the abx protocol for many years - and didn’t see the first glimmers of improvement until around two and a half to three years after starting. My advice would be to continue - after all, there is nothing to be lost by continuing and everything to hope for.

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17&01/21-)

Yes Sonal is continuing with her protocol. But no physio yet because of the lockdown restrictions. So this Covid has set her back quite a bit. But hopefully she may settle to the new worse norm. But mayb e like you her better days are ahead, a little late but may still happen. We are keeping our hopes up

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.

Hi Neena and all. I second everything Boadicea just wrote, particularly about your family recovering from Covid. The battle continues.

Be strong!

Christopher

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

Hi Chris

Thanks for your encouragement and good wishes. Yes were fortunate to come out comparatively unscathed by the virus, but who knows the long term effects. Situation has been very tense in India because of the health system not being able to cope -- doctors were very busy so unavailable often for consultation, oxygen in short suppy, hospital beds not available, doctors had to take care for many more patients than normal. ueues and delays for cremations. Simply awful

But perhaps the worst of this second wave in India is behind us and we will have to brace for the next. This time around a lot of young people in twenties, thirties forties and fifties have died unlike first wave that mostly affected the over sixties. Huge number of children also tested positive, including Sonal's two kids, my nephew niece and others I know.

 

Keep well and hope for the best. 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.

Dear Sarah and all

One has learnt to expect and want so little. And at the moment i am just grateful that we were brushed by Covid but escaped its wrath. So many I know or their relatives have died, uopiungish people in their forties and fifties. Heartbreaking. And medical services have all but collapsed. Slowly recovering now as numbers have steadied or going down.

Yes Sonal will continue the protocol but she dreads the pulse as it makes her puke and then she doesnt know whether the meds are still in her or have been thrown out. She is exploring whether her physio guy can come back now that the family has recovered from Covid.

Sarah good to know that slowly you are able to deal with the big blow earlier in the year.

take care all of 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.

Hi Neena!

Happy to hear you and family on mend and not worse affected by this awful pandemic! I and my family got hit too. We've been ever so careful and in end my daughters special needs school taxi driver passed it on to her( after only 5 journeys over 2,5 days a la 20 mins each) ,- and tho he was slim, healthy and a young 70 year old he sadly died from it and my daughter's assistant was near in need of hospital herself if it hadn't been for her own mothers' home supply of oxygen and breathing relief equipments due to a chronic disorder that she was able to borrow. So tho really bad we were lucky in the end. Worse we've ever felt and at same time had to care for our children and me already on my knees. I felt the after effects much longer as not as mobile anymore. Deffo set me back lots and made me physically worse. As soon as I could I slowly restarted some physio at home but it sure has been no plain sailing. Just got a stationary bike home to attempt more blood flow and muscle memory upping. Also looked at SHAKTI mats and Flowtrones as possible good too. Maybe ideas for Sonal too?

Also I've been fortunate to have been given a 1st dose Astra Zeneca, with 2nd jab this Tuesday coming. What I wanted to say re this is that on the night after 1st jab and the full next day I felt awful- body aches, body weakness, shivers,exhausted, slight temp. I couldn't get out of bed in the morning- had to call my partner who was downstairs to help me bend my legs and get me out of bed. But as I've had the actual covid I could recognise the very same symptoms I'd had then and so tho I felt worried I also could think straight and somewhat relax in mind that this was just a temporary effect. Which after Nurofens throughout the day, sleep and rest under a warm blanket proved to be right. On day 2 and that night I was back to my usual messed up MS me. So please pass on to Sonal if she gets same affect after the jab that it only lasts some hours ok. My partner had no side affects at all.

Like Sonal I'm sticking to a full time protocol with all supplements still now tho I had a premature intermittant ca 6 months protocol prior break. As I only got worse I re thought strategy and reverted back to full time plus much bigger biotin increase and many more of activated charcoal  moppers. All in hope a corner will be turned!

Keep well, happy and safe!

Kiki

Dear Dear Kiki

I think of you so often so do keep in touch even if on my personal email which is neenavyas@yahoo.com. Sonal has got much worse and now is hardly much on her feet, except when my son helps her supports her to walk ten steps to the loo. She is otherwise on a wheelchair when up and about.

This 2020 really put her back as physio and massage couldnt be done, plus extra tension -- as you know -- with kids doing schooling from home.

But her new normal is at a lower point, but we are all thankful that Covid came to the family and left without too much damage. My partner Naresh also had it but has recovered. In india it has been awful, with no certainty of oxygen support or hospital bed if needed. Now numbers are down and perhaps the worst in this wave is over.

Are your kids going to school or online classes?

Do keep in touch. Any news of Liz? nothing heard much after she visited her parents in New Zealand.

Love and 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.

Hi Everyone,

I just wanted to chime in and say hello. I have been away for awhile. I am so sorry to hear many of you have had covid. It is so frightening. As if we don't have enough to take care of in beating this bacterial infection. I am glad you are all over the virus and recovered without harm, well, except for Sonal setback because of lack of physio. But that will come back fast once she starts back up.

I don't know if I have had covid or not. I have had a few occasions where I have felt "flu-like", but have not gotten super ill. Thank goodness because with all my die off reactions, I am not sure I could handle something else on top of it.

I have been away from the site because I did not want to burden anyone with my whoas. I have had a tough time recently with cutaneous porphyria, but I think... I hope, I am finally through the tough parts. I have gone off antibiotics twice in the last month because my skin was so red, with lesions and painful, I couldn't handle it. I have tried all remedies listed here on this site from Cimetidine to Vitamin C flushes to all the moppers. Also had my liver function tests done and they are all normal. I tried hydrocortisone - nope seemed to make it worse. The only thing that helped was taking a break from abx.

I went off for a week and when my skin seemed to be clearing, went back on. Within 3 days skin started to burn with red patches coming back (face and hands). So went off again. It has been 5 days and my skin is much better. I found a cream with high zinc oxide content. It seems to be making the lesions clear faster so I am hoping it will keep the lesions down and under control while back on abx. I started antibiotics back up today. Wish me luck.

Good news is that during each of the times I was off abx, everything got so good. My brain fog lifted and I could think and I was funny with friends. A couple mentioned they never knew I had a sense of humor. My memory started to come back. I could remember those 6 digit number security codes you get via text to enter accounts. While on abx, I would have to write those down and could only remember 1-2 digits at a time. But off abx, I could remember 9-12 digits easily.

So I am totally enthused and encouraged to keep going. I just have to figure out what works for me with all this die off (brain fog, memory loss, uncoordinated and walking like a robot, loss of balance, skin lesions - those are the top 5 die off symptoms I have). So far, nothing listed on this site has done the trick.

I do feel incredibly better after having drunk a bottle of pine tree needle tea (I make it myself). It has Suramin and Sirkanin, two things that are supposed to help fight viruses. I found out about it and started making and drinking it a few days ago, to help ward off covid. I get a huge boost of energy and feel lighter and clearer for about 2 hours after each bottle i drink. I am hoping the boost in energy and clearing of my head (and maybe clearing of skin) will continue if I continue to drink it. Maybe it clears toxins??? I will keep you posted.

I also found a cream that has high zinc oxide content and have been putting it on my lesions. They seemed to clear a bit faster this time while off abx, so now that I started back up on abx, I hope the zinc oxide might help keep the skin lesions to a minimum.

Anyway, just to reiterate and to try to encourage anyone thinking of quitting. I have been on abx for 13 months and I am just now, just barely starting to see improvements. And I only happened to see those improvements because I went off abx for a short time because the die off symptoms were continuing to increase for me, month after month, yes even at month 13 they were still increasing and getting worse. If I had not stopped abx for a week, I would be thinking the protocol was NOT working and my MS was getting worse.

But in fact I now believe it is getting better, and possibly hitting a crescendo or peak in the die off reactions. Gosh, I hope this is the peak. I don't know if I could take it if it were worse.

Wishing everyone a ton of luck and hoping everyone improves with every passing day. My heart goes out to all of you and I am sending strength and healing vibes to my online friends here and all those with CPN... and Covid and any and every other illness  out there.

Warmest wishes for each new day

CAP on my own since 04/20. Roxi 300/Doxy 200/Flagyl or Tini pulses every 3-4 wks/20+ supplements adjusted monthly. Battling die off & porphyria often. First improvements noted @ 8 months.