5 Apr 2019
Author
Kiki
Title

NEWBIE- advice and experiences please! Protocol starting JAN 2019

Body

Hi all incl Sarah and David! I'm new to here. Just recently weeks ago I was diagnosed with intermittant relapsing MS. Seemingly it all started in 2006 with optic neuritis then 2011 with lower limbs tingly,/ numbness. I have been started on daily Copaxen injectitions. But with a severely disabled child Im struggling both physically and mentally. Please help with advice as to how where, who, how much etc to get started on Wheldon Way of treatment. I believe in going in for the underlying cause rather than just band aid stuff. Thank you! Kiki Bojanic

Comments

neenavyas

15 Jul 2019 08:19 am

Lizzie excellent news. Keep us informed as you have been doing. So good to know double hammy improvement in walking and your head. Wonderful!

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.

ElizabethAnne

17 Jul 2019 07:36 am

Hi everyone,

What I've noticed since Sunday:

at the start and end of the day I'm limping like before, but in between I'm walking totally normally, no limp, and my balance is good. I noticed that I am not swerving to the left. Nor do I have to watch my feet.  

Notice how calm and measured I'm being about this? Impressed? Tee hee! I know I have a loooong way to go, but by god, it's wonderful! 

Byeeeee!

 

Elizabeth Anne

neenavyas

15 Jul 2019 08:21 am

Kiki

dont despair. Just carry on . As Sarah says keep to the five day pulse or three day pulse every 3 weeks. Give your body time to flush out toxins and see how it goes. You will turn a corner so don't lose hope.

best best wishes

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.

Jan Figtree2019

15 Jul 2019 12:48 pm

Sarah--

Have a look:

https://europepmc.org/abstract/MED/30148869

 

Also, I think it is very important for anyone trialling Vitamin K to state the type of Vitamin K they are using, so that readers will know what to buy.   The above article is about Vitamin K1, not K2 ... but interestingly is discussing it's use for MS.

 

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

Kiki

27 Jul 2019 02:29 pm

Wondering..

So about to start next pulse this coming Monday and theory growing in my mind so thought I'd ask yous all whether you've had/ have samish thought.

Do you feel/felt that when actually doing the pulse you feel physically better ie bad symptoms improving for that brief moment? Im now half year past on doing pulses so the general extra tiredness and sleepyness don't quite affect me as much. Probably as I'm used to this now so don't think about it too much.

I still feel the emotional changes due to taking the Tini and also feel it somewhat til 2/3 days post pulse. But it's been almost as if during ( and only during pulse to be fair) pulse my physicality improves tiny bit making me think I wish I ate the Tini all time. But due to the emotional effects I'm not even going there. Was just wondering whether I'm imagining the feeling better physically bit whilst on Tini.

I shall observe more come next week but if you think thoughts re this please jot down and share. However much of thoughts really.

Kiki💖

Kiki

29 Jul 2019 02:01 pm

So this day has gone all topsy turvy and I just managed my own dinner and last of supplements for the day at 18.45 pm. Question is WHEN  can I  take my Tini pulse dose now? Plus when can I now take the activated charcoal before bedtime?

Normally I take Tini after dinner as all else been taken before. Tho not today..😳

Sarah

29 Jul 2019 02:37 pm

I should leave it for today, maybe taking the charcoal later, then things might be better tomorrow!

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.

Jan Figtree2019

29 Jul 2019 06:05 pm

Hey Kiki!

Your two-hour window around taking Activated Charcoal (AC) is right according to Mayo Clinic.

In general:

AFTER taking any meds and supplements:  I wait at least 1.5 hours BEFORE taking a dose of AC, .... otherwise the AC will just absorb the stuff I've taken.

AFTER taking a dose of AC, I wait at least 1.5 hours BEFORE taking more meds and supps..... otherwise they are just absorbed by the charcoal and I've wasted my meds/supps/money.

I am pushing the window by taking AC at the 1.5 hour mark... I TRY to wait for the full 2 hours on either side, but like you, I am often crunched for time to get all meds and supplements in during the day.   

Sometimes, I just wait until after I've gone to bed.... get up at midnight and take my dose of AC.

 

Wishing you well on this Pulse.... I also started today.

Cheers.

 

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

Kiki

29 Jul 2019 06:29 pm

Thanks a million Jan for answer! Popped the Tini 2 hrs past supplement. Just gone to go to bed without the AC as didnt want to risk loosing the Tini purpose but will go back downstairs now to get some AC in me as been 2.5 hrs by now. Feeling loads better armed with your info!

All best Jan with pulse too💖

Kiki

Kiki

7 Aug 2019 03:03 pm

Hi all!

Yep- Im still here albeit sooo busy with kiddies off school!

Just a question if any of yous have found a supplements or such that boost your energylevels up somewhat? All ears and happy to hear all suggestions.

I know protocol might render ones energy somewhat " missing in action" but still..is there anything out there ?

Kiki💖

Sarah

7 Aug 2019 03:36 pm

Caffeine!!

You can get caffeine tablets from Amazon, either plain or with additions.

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.

Kiki

7 Aug 2019 04:31 pm

You and bananas..me and coffee haha Sarah!

I did the coffee route loads in my student days. Im thinking more how to get umph back in this weery slow coach of body. Or am I to just have to accept this is the journey now until better days ahead? Has anyone tried ginseng, guarana etc? Or are they poss too weak to have any effect when in combo with abx?

Kiki

neenavyas

7 Aug 2019 11:26 pm

Dear Kiki

The Koreans swear by Ginseng but I do not not like it much. Green tea tastes nicer and makes me feel good. Have you tried those green tea jasmine chinese pearls that unfurl when hot water poured over. Simple to make too. No sugar, no milk. just hot water and loads of antioxidants, I am told. xx

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.

Sarah

8 Aug 2019 07:54 am

How about glucose: I suffer from hypoglycaemia sometimes but a couple of tablespoons dis#olved in water rights that in about 15 mins.

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.

Kiki

13 Sep 2019 11:38 am

Ps. What to do?

I've been taking NAC everyday with protocol  2 hrs post antibiotic intake but just read online that one shouldn't take NAC if on antibiotics as their effects might lessened!

I'm not yet on internittant.

Thoughts and advice please?

Kiki

D W

13 Sep 2019 02:10 pm

Kiki, NAC does apparently interfere with the actions of gentamicin and tobramicin, but these antibiotics would never be used for the treatment of C. pneumoniae. I shouldn’t worry.

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

Sarah

13 Sep 2019 02:07 pm

Kiki, don't believe everything you see online: even my microbiologist husband was doing exactly the same thing as you!

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.

neenavyas

14 Sep 2019 04:22 am

Dear Sarah/ dr wheldon

sonal has also continued taking NAC 600 mg twice a day. So I suppose that's OK as dr Wheldon just replied to Kiki.

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.

Sarah

14 Sep 2019 07:30 am

Of course it is Neena!

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.

neenavyas

15 Sep 2019 01:58 am

thanks Sarah

wonderful the way you reply so promptly. By the way yesterday Sonal told me her right hand which was better -- she could tie her hair at the back -- has again become weaker and she is not able to tie her hair any more. I suppose this backward forward movement is to be expected? Otherwise ok she is getting ready for her fourth pulse later this month. She has more energy , is able to sit up for longer hours, is able to just about stand for a second or two without support, but not able to take even one step without aid. I suppose for that one should be able to stand on one foot while the other is lifted and taken forward. But she does feel when walking with a walker, that her balance is better. 

Thanks so much for this website your prompt replies and that U-tube which has saved us from utter despair. Hoping for better times next year.

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.

Sarah

15 Sep 2019 11:09 am

Neena, especially in the early days, I went through many such periods but I got used to it.  It seems to be that one's feet are maybe the last to recover, because they are furthest away from the brain: my Babinski reflex started to calm down after about six months, but did not go completely until two years ago.

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.

neenavyas

16 Sep 2019 03:05 am

Thanks Sarah for always being there. It means so much keeps everyone's spirits up.

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.

neenavyas

17 Sep 2019 06:21 am

hi christopher

by now you must have started Abx protocol. How's it going? Just wanted to make contact. Sonal will be doing fourth pulse with metro later this month.

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.

ChristopherJ

17 Sep 2019 11:21 am

Hi Neena

Thank you for asking. I've been taking doxy and azithro for 6 weeks now and getting ready to start my first pulse with metro in 2 weeks. Also been doing the supplements. (I know, a long way to go). I live alone and have been housebound for 5 years now and just recently landed in a wheelchair because my mobility has declined severely this past year. I don't have a doctor so I'm doing the abx protocol on my own.  Other than Dr. Stratton at Vanderbilt, I'm not aware of any doctors here in the US that know of this treatment. I guess that is the case for a lot of us no matter where you live! I acquired my abx though a friend from Mexico.

Christopher

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

Kiki

17 Sep 2019 04:20 pm

Hi Christopher!

Just a quick message to say you're never alone on this journey with this forum and super helpful caring fellow "protocollers"!

Best of results for you!

 Kiki 💖

neenavyas

18 Sep 2019 12:34 am

Hi

So good to hear you were able to get the meds as that is a big problem for many although not here in India where I live. The first pulse is a bog landmark. My daughter in law with MS who is also more or less house bound unless my son or her mother take her somewhere in a wheelchair took the first pulse without much problems. She will be starting her fourth in a day or two. Still a long way to go but once the pulses start one has to count a few weeks to the next and then the next and time goes by quicker.

wishing you the best on this journey to health.

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.

26 Dec 2018
Kiki