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

Kiki

22 Jan 2020 01:53 pm

Thank you Jan

I personally learnt loads new stuff with your posts and re NAC too! I've been that busy with life and daily protocol that I now even discovered I've not been updating/increasing my artillery of supplements properly either so thank you for your reminder of supplements too.

I'm really enjoying hearing from your very informed mind! It's both interesting and supportive of this journey.

Kiki

Jan Figtree2019

26 Jan 2020 11:51 am

Thanks for your kind thoughts.  I am very interested in your progress, Kiki.... 

 

Jan

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

Jan Figtree2019

22 Jan 2020 09:45 am

Hey Lizzie!

I am sorry your first time out (Intermittent Protocol) did not work out well.  But I am wishing you well for the second foray!

Cheers,

Jan

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

ChristopherJ

16 Jan 2020 10:55 am

Hi everyone!

   I just wanted to say that I'm still reading all your postings and very happy to hear of your progress. I just finished my 4th full pulse last Friday and I'm certainly glad for the time in between before the next one. After 6 months of the full cpn protocol, I know this battle has a long way to go. Reading of Lizzie's and Jan's improvements has been great to follow since they started just some months before me. 

  Hoping for everybody's continued success in the new year!

Be well,

Christopher

 

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

Jan Figtree2019

16 Jan 2020 01:30 pm

Great job on your pulsing!  Body restoration is meticulous job... takes a lot of patience!  Wishing you a great, healthy new year.

 

Jan

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

ElizabethAnne

21 Jan 2020 02:33 am

Hi Christopher,

Slight set back for me! Well not really. I believe I stopped too soon — I should have listened more to advice from people like Boadicea and Sarah. 
How are you doing? 
Cheers,

Lizzie

Elizabeth Anne

neenavyas

19 Jan 2020 04:07 am

good to know you are carrying on. Yes, a hard uphill task but the hope keeps us all going. Have a great New 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.

ElizabethAnne

30 Jan 2020 11:03 am

Hi Jan and everybody,

I was talking to a man earlier today and he asked about my limp. I told him all about CPN and the protocol, and that I was in the recovery mode. He asked what supplements I took - I filled him in. He was really curious about it. You see, a friend of his who is recovering from neurological damage has been making great strides by supplementing amino acids. He referred me to a book by Dr Minkoff, that he was pretty impressed by. He himself has overcome nerve damage, he said.

Has anyone heard of Dr Minkoff and his supplements? If you do a Google search there is a lot of news about him being a 'quack' etc, but we've all heard that. Anything that's not mainstream, eh, Dr Wheldon?

My new friend is an educated, successful, business-owner and father. He was completely open to CPN and the fact that I'm healing. I think it's worth a look. Jan, I thought you might know!

best wishes all,
Lizzie xx

 

Elizabeth Anne

neenavyas

31 Jan 2020 03:01 am

Hi Lizzie

do let us know your view or experience on the amino acid s recommended if you do try those out. Good to hear you are back on the protocol. Better be safe rather than sorry. Why stop too soon? It doesnt really matter if you overkill rather than leave a few of those nasty bugs kicking and growing inside your body.

Keep in touch and let us know if the sores in your mouth go away with restart of the protocol.

Sonal no deterioration no progress. More energy, remains cheerful and positive. But no improvement in mobility. She has spasticity and that affects her gait and mobility too. She has reduced Baclofen for spasticity (prescribed  by the neurologist several years ago ) to one-fourth the dose she was having earlier and also reduced meds for depression by half and she says she feels fine on the lower doses, unlike earlier.

Sonal will soon start her ninth pulse. By the way las t pulse made her fee;l good after it was over. It felt as if the pulse really did something very positive even if no obvious impact on mobility. Did you ever feel that way after a pulse?

xxx

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

30 Jan 2020 03:21 pm

I have heard of Dr. Minkoff only in passing.  

As for his vitamins, supplements:

Here are the ingredients for his Complete Multi + Liver Detox Support:

https://bodyhealth.com/products/complete-detox

It's a basic B-complex vitamin + minerals with extras.  And you need 4 tablets/day.  So, it's almost $60.00/month (120 tablets/4).  I do not know if it is cost-effective.  (For me it's not.) It just depends on the amount of each ingredient you want/need to take every day.

Nothing wrong with the ingredients as far as I can see.... they cover the basics and then some.  

The other supplements look fine. For example, their Amino Acid drink mixes (they have a variety of flavors) look expensive:

This is a 392.46 grams (60 servings) for $74.95 + shipping (which it looks like you pay):

https://bodyhealth.com/collections/all-retail-products/products/perfectaminoxp-drink-powder

compared to:

https://www.bulksupplements.com/products/essential-amino-acids-powder?variant=29482446454895

This is 1 kilogram (66 servings) for $34.96 + free shipping.

 

I do think that paying attention to nutrition/nutrients is very important on the CAP.... we're kind of tearing down our body with a lot of ABXs (as well as killing the Cpn), and we need excellent nutrition to rebuild.  

I do like that Dr. Minkoff seems supportive of a Low-Carb diet---but that is not unique to him or his protocol.  And I am prejudiced about low carbs as it is similar to the ketogenic diet I follow.

Lizzie-- You've made me think about Amino Acids a bit more.  I have not incorporated any AA supplements into my protocol, but I might trial some in the near future---to see if it helps with energy and exercise tolerance.

Thanks for writing,

Jan

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

ElizabethAnne

31 Jan 2020 04:35 am

Hi Jan, Neena, everyone,

Yes, I'm going to too. 
It seems they're a good repairer, a builder.  Nothing to loose!

Cheers,
Lizzie xx

Elizabeth Anne

Jan Figtree2019

31 Jan 2020 11:36 am

Hey Lizzie!

Let us know what product you use and daily dose.   I'm very interested in this experiment.  

 

Cheers,

Jan

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

ElizabethAnne

3 Feb 2020 04:57 am

Hi Jan,

I downloaded the free PDF of Dr Minkoff's book (Search for the Perfect Protein). I haven't read it all but boy, it makes sense. I have ordered a random type on Ebay. -- 

SCITEC NUTRITION BCAA 6400 branched-chain amino acids tablets

SKU: Content: 125 caps

They should arrive tomorrow. There is a very smart owner of a health food and supplements store here in Northampton. I'll go there next weekend and take her advice.  I'll keep you updated.

I started a new pulse today.

Cheers,
Lizzie

Elizabeth Anne

Jan Figtree2019

3 Feb 2020 12:26 pm

I had a look at the Scitec BCAA reviews on Amazon--They were quite good--the BCAAs in good ratio.  The price, though, was astronomical:  375 tablets for $147.00 + shipping.  And with 5 tablets per serving, that is 75 days worth of BCAAs.  Please tell me you got a better deal!

In comparison, have a look at Bulk Supplements' BCAAs on Amazon:  https://www.amazon.com/Branched-Chain-Essential-Powder-BulkSupplements/dp/B00E7GV6H4/ref=sr_1_4?keywords=bulk+supplements+bcaa&qid=1580749639&sr=8-4

So for about $26.96 + free shipping with Amazon Prime you get about 111 servings (they recommend taking it three times a day).  

Please don't be mad at me for posting alternative sources (I just think it might help people on tight budgets).

One further consideration is the list of excipients in all vitamins/supplements.  (Excipients: an inactive substance that serves as the vehicle or medium for a drug or other active substance;  "excipients are things like coloring agents, preservatives, and fillers"). 

If you take a lot of supplements, these excipients can add up and unknowingly cause problems.... some people have a sensitivity to them (slight allergic reactions:  wheezing, sneezing, etc).

So, for example, the Scitec BCAA tablets contain the following excipients:   "Grained, Bulking Agents, Microcrystalline Cellulose, Talc, Colloidal Silicon Dioxide, Magnesium Stearate".

The Bulk Supplements BCAA product contains the following:  "Free of: Sugar, soy, dairy, yeast, gluten and additives."

 

I am very interested in your BCAA experiment!  Please continue to let me know how you feel after a week or so on them.  Thanks for sharing!

Jan

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

ElizabethAnne

6 Feb 2020 07:49 am

Hi Jan,

I started with my first 5 tablets yesterday. My order was smaller and therefore a great deal cheaper than the one you mention: 

SKU: Content: 125 caps Total: £9.90

at 5 tablets a day that's 25 days, 5p a day. 
I prefer tablets or capsules to powder. It's easier to not get it wrong. New worry - the bulking agents. Curses! They're bulky enough already...

I'll keep you updated on progress. 

Bye for now,

Lizzie

Elizabeth Anne

Jan Figtree2019

7 Feb 2020 01:36 pm

Hey Lizzie--

I am really looking forward to your reports about how the AAs affects you... 

Cheers,

Jan

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

ElizabethAnne

6 Feb 2020 10:38 am

Amino Acids, again

Hi Everyone,

I was thinking about the research that Jan found about how CPn has been leaching our vitamins. 

I did a google search and this came up:

To function adequately, the central nervous system (CNS) requires a number of amino acids found in protein foods. Amino acids such as tryptophan, tyrosine, histidine, and arginine are used by the brain for the synthesis of various neurotransmitters and neuromodulators (Betz et al., 1994). To date, CNS requirements for specific amino acids have not been systematically investigated, perhaps because it has been assumed that brain requirements for precursor amino acids were not critical. Furthermore, appropriate methods of determining whether adequate levels of particular precursors are provided to the CNS by the diet do not exist. Although little information on CNS requirements of specific amine acids is available, results from several lines of related research suggest that the peripheral concentration of particular amine acids can be a factor in the regulation of central neurotransmission, cognitive performance, and mood state.

And --

glutamate

The most prevalent transmitter is glutamate, which is excitatory at well over 90% of the synapses in the human brain. The next most prevalent is Gamma-Aminobutyric Acid, or GABA, which is inhibitory at more than 90% of the synapses that do not useglutamate.

I've known for a while that triathletes use things to aid body recovery, now to see if this can aid our recovery!

Cheers,

Lizzie

Elizabeth Anne

Jan Figtree2019

8 Feb 2020 04:47 pm

Hey Lizzie!

Just saw this post... I will be reading more about AAs.

Hope your pulse is going well.

 

Cheers,

Jan

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

Kiki

31 Jan 2020 08:46 am

Just a thought..

1+ year  into this protocol journey and I only now start to wonder. HOW do you know when ABX has done its job and Cpn has been beaten to smitherins ( Im really enjoying the violent physical fight talk to this persistent lil bug haha) and HOW  do you know that its now the need to do more physio rehab rather to recover physical (renewed) strength and abilities VERSUS "simply" continuing with the ABX still ?

Kiki

 

Jan Figtree2019

31 Jan 2020 11:29 am

Hey Kiki--

I've been thinking about this since I started the protocol.  

Have a look at this link from the US CDC:

https://www.cdc.gov/pneumonia/atypical/cpneumoniae/hcp/diagnostic.html

Knowing these tests exist is one thing.  Getting a doctor to order the tests, and paying for them is another.  And finding an excellent lab to run the tests/evaluate the results is yet another.

And even if we could get the tests, does it catch all three phases of the Cpn growth..... ???

Jan

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

boadicea

31 Jan 2020 06:13 pm

I really wouldn't waste money on testing in order to see whether the infection has been dealt with.  No testing is completely reliable and a combination of looking at symptoms and looking at the response to abx is a far better guide.  I would continue treatment until symptoms have resolved and until I'm no longer getting any sort of response to taking the abx.  Your body will tell you when it's done, if you listen.

All my improvement has come from the treatment and doing as much as I can within my capabilities as they gradually improve.  My personal view is that, if symptoms remain, treatment should continue.

As observation - from being here a long time now - there seems to be more focus recently on treating for 12 months, which I don't recall hearing so much about years ago.  I don't think the infection adheres to set timescales like that and we need to remember that some of us have had these infections lurking for a very long time, so they do not tend to go quietly or quickly.  As so often said, it's a marathon, not a sprint.  It definitely teaches us patience.

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

Jan Figtree2019

31 Jan 2020 09:39 pm

Hey Boudicea,

Thanks for writing.  

Could you clarify what your symptoms were when you transitioned from the Full-Time protocol to the Intermittent Protocol?   And how long were you on the Full-Time Protocol?

I am guesstimating how long I will be on the Full-Time Protocol.... my Psoriasis (elbows only) is almost clear--and I am not quite at a year of the Full-Time Protocol/ABX.  I am waiting, measuring, and logging my symptoms.  I think I will probably be on the Full-Time Protocol/ABX for at least another year judging how far I have to go to clear the excess collagen all over my body.  

 

Cheers,

Jan

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

Kiki

1 Feb 2020 06:06 am

Hiya Boadicea

As always your words and experiences are gratefully received! Im by no means taking the stance of a 12 month cure only- its more a thought of where to see/ consider my symptoms of affected physical movements are maybe now more to do with needing to work on physio rehab so to improve rather than count on the ABX to solve that. Or does the ABX together with just daily living and chores simply just get you back to where you were before ie normal ranges and movements?

 

When I had my reconstructive knee surgery I really had to work hard to get back to some sort of normal functions and range again. As thats my only experience of having to work on normalising my weakened body so re a MS recovery which is a total new world of experience to me I just had to enquier more to understand better. Seeing as medical world consider this an incurable condition Id get no good advice from that world.

Kiki

 

Kiki

17 Feb 2020 09:53 am

Hi fellow Protocolers!

I did my pulse 11 last week fine. Post day 3 today. I must say this pulse had me being more active tho still low energy to achieve too much. I feel like Im in a better state when pulsing and once pulse is done I'm back to square 1. I know it sounds weird! Was debating extending pulse but decided not to as kids are off school now for a week so best not push on too much. Anyhows- Ive also dedicated every day for once or twice mini physio rehab sessions for myself AND accepted a friends sharing of Deepak Chopras 21 days abundance meditation challenge. So now I fit in that every day to soothe myself and evolve- it's so lovely, easy and nicely thought provoking !

I really believe too that Im having to up my physio in order to help myself improve now as I sort of let go and kinda gave up- not making this journey any more fruitful. Just assumed the meds would do it all on own. So spring is nearly here and I'm gearing up to a more active summer this year!

Kiki💝

neenavyas

18 Feb 2020 02:54 am

That's good Kiki

do devote more time and energy onm healing yourself though it is difficult with kids demanding so much of your energy and time. I keep saying this to Sonal too. Please devote time to yourself.

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.

Kiki

17 Mar 2020 04:02 pm

PS all!

Due to news suggesting not taking any anti inflammatory meds like Nurofen/ Ibuprofan in case of needs to reduce fevers if one gets this dreaded Corona virus - whats your views of this and how much of underlying condition is it to have MS? What CAP meds we're taking now- are they anti inflammatory and so worsening poss recovery from Corona as is being said ( rec now are to only take paracetemol) Appreciate all knowledge shared incl hopefully a comment from Sarah and DW.

Kiki

26 Dec 2018
Kiki