31 Jul 2020
Author
IXN_2019
Title

One Year to Dr Wheldon's protocol-when to stop?

Body

Hello everybody,

It is the first time I am writing at the forum. Last year I lost my vision on my left eye around 85%. I did a lot of tests (lumbar puncture- negative). It was a Clinically Isolated syndrome but after having an MRI with more than 10 lesions the doctor said that it was RRMS the diagnosis. Everything started with a virus that would not let go. Blood test showed Epstein Bar IgG antibodies. I always had several pains but thought everything was related to my lower  back pain (slip disk).

Comments

I followed Dr Wheldon's protocol. Prior to that it was impossible to me to drink Acetylcysteine NAC. Following the MS diagnosis I also discovered Hashimoto Thyroiditis. I have completed 1 year on the protocol. Before I started the protocol I did a blood test for Chlamydophila pneumoniae IgG which was positive. 

4 months ago I was infected with Covid-19 and I believe the protocols antibiotics saved me. When I did the pulse after the covid  infection with Flagyl it was really hard. But I did not get any MS symptom.

I know there is not a clear answer about when to stop the protocol. But I would like to know if there is any Blood test I could do to go to the intermediate phase. Is the molecural blood test the one that  shows the presence of Chlamydophila pneumoniae or not. 

Please advice

My daughter Sarah has now been on CAP for  months, recently changing back to compounded Tinidazole after the Metro made her feel ill. In the past week, for the first time, she has disabling fatigue. She is on a protocol from Dr. Paul Thibault which has continuous mini and Roxi, with 500mg Tinidazole once a week for the past 4 weeks. is this too much? Should she have a break? Dr. Thibault has taken he off the NAC lately due to some recent research that it can increase her load. Her supplements are;

b12, mg/day

selenium 200mg/day

alpha lipoic acid 600mg/day

resveratrol 200mg/ twice/day

vitamin c 1000mg/day, delayed release

vitamin d 10000iu/day

vitamin e 400mg/day

acetyl carnitine 250mg

probiotics, separate to the antibiotics, 15 billion cfu

vitamin k2 mcg

Vegan Dha/epa 300mg

magnesuim L-threonate 2000mg

epo 1g

cal/mag/zinc 1000/400/5mg

vegan multivitamin

 

 

 

Clanmiles, your daughter's protocol sounds fine to me and Ì don't think it advisable to stop all antibiotics when treating an infection.

You might ask Thibault if you could leave off tinidazole for a few weeks, but it might be that she is reaching a crucial stage in recovery: best ask him what he thinks.

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 all,

Just to inform you that Sonal finished her first TINI pulse three to four days ago and it was not nearly so bad so taxing as flagyl. Of course she had completed about 13 flagyl pulses sometime in June-July but the last two left her completely drained and much worse mobility wise. Wonder why? Otherwise she would say that normally for a couple of days after a pulse she used to feel better.

Throughout she kept on Roxi Doxi as usual plus supplements.

Keeping fingers crossed that she again starts feeling better even if not improving mobility wise.

Any ideas Sarah why the 12th andf 13th pulses of flagyl hit her so hard. You think buildup of toxic waste?

I hope you and David are recoveri8ng or have recovered from the nasty after effects of Covid. Many dont feel anywhere near normal for months.

Take care all of you. Keep well and keep Covid at bay.

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, when Vanderbilt first started on this treatment tinidazole was not available in the US, plus it costs more than metro, so they used that. Now tini is available and so Stratton appears to suggest it in preference. Maybe if they had used that and rixithromycin in place of azithromycin, the soke trial would have succeeded. Maybe this is what Sonal needed! I hope so.

I am feeling much better after covid.  My lungs weren't badly affected at all but my brain was.  Deleriun: why else would I have walked downstairs on my bottom and decided to sleep on the hall floor in the middle of winter?  I don't remember any of it!

My legs are getting much stronger again though and knowing that I have no new lesions since my diagnosis of SPMSS shows that my treatment worked!

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 Dear Sarah

Yes I have been reading a lot about how Covid can affect nerves and brain. I hope you are over any confusion you may have experienced. Simply awful. More and more evidence -- so dictors say -- that Covid can affect different people differently and takes several months to really heal. Do take care you and David.

Sonal had a comparatively easier time with her first TINi pulse although she did report huge fatigue but less nausea and less of the metallic taste in her mouth and total lack of appetite felt with Metro.

 

On your email I had sent you some research I came across which sounded interesting. Did you get it. If not I will try and post it on this site. It said something about mouse models doing well on something called NAG, n-acetyl glocosamine, high doses. Do show to David and ask him. One comment pasted below was that one person with G Barr syndrome with neuropathy found significant improvement with a high dose of this NAG supplement, while some others could not tolerate it

Just some personal news: my granddaughter -- Sonal's niece -- has joined UCL in London just a few days ago. So if this corona takes a back seat, distinct possibility of me trying to visit London.

 

Hope you recover fully -- brain and legs! -- and become stronger than ever. By the way, any news of Lizzie? Is she still in New Zealand, the place to be to get away from Covid!

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.

Thankyou Neena, I am much, much better now and the confusion only lasted a few days. It was real though, while it was there, and for a while I had no idea where I was.

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.

Incidentally Neena, I did my Masters at UCL, but David and I were only talking a few days ago about parents (and grandparents) who make unexpected visits to their children at University. Someone we knew was about to make a surprise visit to her son to make him a nourishing meal. We both would have been horrified if our mothers had turned up to do such a thing: bear this in mind!

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,

no the visit, if it materialises, will have to wait till corona subsides. Hopefully she will be there for 3 years. Just settling down and liking it too despite the quarantine.

What a coincidence. You too at UCL! If I do visit at all  I will not try to make her a nourishing meal! and would love to travel to Bedford to meet up with you and David. Hope this wish comes true!

Take care, Good to know you are much much better. But take it easy.

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.