Cpnhelp.org

Wishing you all the luck in the world with this, Jan. Keep in touch with us all here. Cheering you on!

What an excellent tale Jan, and in many ways quite similar to mine, going for about twenty years before having my MS diagnosis thrust at me, simply because I didn't want a life of useless meds which would do nothing for the disease.

As you say, you want to heal your immune system, not supress it and suppression is all that I might have been offered.  Healing is much the better!  I will look forward to following your journey!

Boadicea and Sarah--

Thanks for your kind comments and support.  It really helps to have people in similar circumstances walk along with you as you do this protocol.  I'm off to do my daily hike... it's getting hot here in the desert.

Cheers,

Jan

Hi Jan,

I only just came across your post. Fantastic. It's amazing, isn't it. I came across this site at the end of last year, having been diagnosed with MS years ago. I only really started badly deteriorating in about August, so brilliant timing. 

Your reaction to Doxy is like that of a very disabled friend of mine. His MS has been debilitating for some years, but when he was treated for peritonitis with, he said, masses of antibiotics for 2 weeks, he felt wondrously better.

I started the protocol in January and I have had great results, including a terribly stiff knee becoming flexible and better. 
I have had one Metronydazole pulse and it was fine. I just want to start getting better -- the lack of walking is pretty bad.

By for now, Jan. 

How was Africa?

best wishes,

Lizzie

Hey Lizzie--

Africa was a trip of a lifetime (gifted by my very wonderful mother-in-law... the whole family went and shared the experience)...

I just started my first Pulse today (am using Tinidazole).

I also am not pushing hard.  I am doing one day of Tinidazole to start, and will see how it fares. 

I've often (not always) found over the last five years when trialling new drugs/supplements that a reaction is delayed... up to 3 or 4 days.  And then it can hit me hard:  headaches, nausea, heavy fatigue, itching.... and more. 

I use Activated Charcoal and Diatomaceous Earth in small amounts to control die-off.  And I only use one or the other at a time---it can really jam you up (constipate you).  And drink a lot of water to swish it all out.  The charcoal is a well-known binding agent (but it will bind the medications/supplements as well as the die-off, so you have to space everything out accordingly).   D.E. is also a binding agent and very constipating and drying (tiny amounts and lots of water)..... both are very effective at mitigating die-off junk.    

The going low and slow is instructional for me.   I learn how my body handles not just the new drug---but the new drug in combination with everything else I take (mostly vitamins)...

And I only introduce one thing at a time, so if I do have a reaction, I can be fairly confident of what has caused it.   Then I can adjust the dose in amount and frequency. 

Will update later this week about my first Pulse and reactions.

Thanks for writing, Lizzie.

Have a great evening,

Jan

Jan, Lizzie and of course Sarah

my daughter-in-law Sonal has started the Wheldon protocol just today with her first day of Doxy and I cannot wait for her to finish three months including a pulse with Metro.

We havent still got a list of supplements together, not a complete list and would welcome help on that -- supplements, probiotics or anything else that needs to be taken apart from a healthy diet with lots of veggies and fruit.

It is so inspiring to see these stories of success after years of getting nowhere with disease modifying drugs and naturopathy and progressive decline.

Fortunately in India where we live getting medicines is not a problem. And now we have a doctor on board willing to try out the Wheldon protocol and keep an eye on Sonal's health as we proceed. But we depend on Sarah and the rest of this community to keep our spirits up and keep us informed.

Cheers and good luck and best health to all

Neena Vyas

One thing, Neena, Sonal asked me by email earlier if she should stop her daily glass of red wine in the evening, used to help her relax. I think I put her mind at rest by saying that I never stopped, and that was on my personal doctor's orders!

Wonderful Sarah

i know Sonal likes to have a small glass of red wine at the end of the day — with two children, a boy just turned 14 and a girl aged 8 — she needs that red wine! And she was worried she may have to give it up!

you made her day yesterday when you said she could continue

take care

Neena

I’d be very careful of drinking alcohol when taking metronidazole, as the combination can cause nausea and vomiting in some people. I’d go cautiously, until you see if it can be tolerated. Sounds as though you were one of the lucky ones, Sarah. 

Hi Sonal and Neena

I just recently did my first pulse with Tinidazole and it says not to drink alcohol with it for the 5 days plus 3 days after as it can give you some unpleasant side effect. I know generally they say to not drink with certain antibiotics so check first. At the end of the day this MS is more worth me beating than anything to me personally so sacrifices are part of at least my journey. As the main carer too for my 15 year old wheelchair bound eldest and a busy 9 year old I feel for and totally get your daughter in law tho! Just stay safe and on course. Newish myself I am expecting a bumpy ride but also a more resiliant and strong person coming out of this. Every journey brings you lesson in life and we only get given in life what we can handle so already I know I have a true warrior spirit to succeed!

May love and light guide yous💖🙏

Kiki💖

Hey you lot: Sonal only started on doxycycline two days ago: pulsing is months off, plus is only five days a time.
For the first two or three pulses I was good, but then I saw David drinking during his pulse, so I tried it. Result: no nausea.

💖

Hi all!

I did my First Pulse of Tinidazole this past Monday (04-08-19).  I took two pills of Tinidazole (500 mg./each tab)... one in the morning and one in the evening---both with some food.   I do not drink alcohol, so I don't have to worry about any interactions on that count.

The biggest responses/side-effects? to this First Pulse seems to be some fatigue, one headache (Ibuprofen solved this), and the day after (Tuesday) I had a yucky bowel movement. (I eat a lot of plain yogurt and take probiotics including Mutaflor).   The rest of the week I experienced quite a bit of stiffness upon waking.

It is probably useful to reiterate to readers that I do NOT have MS, but suspected Scleroderma, Ankylosing Spondylitis, and a tiny bit of Psoriasis on elbows.

The morning stiffness is something that was almost gone while doing three months of Roxithromycin and Doxycycline, and with the introduction of the Tinidazole has come back.   But, as before, the stiffness dissipates within an hour of moving about in the morning.  I am interested in seeing if the stiffness goes away in the next week, or simply lessens.  

I also continue to see recession of the thick excess collagen all over my body:  on my face, neck, forearms/hands, and all of my legs ... it's hard to see my torso :-)... but I do feel that my skin is softening. 

The Skin Pinch Thickness Test:   this is a simple test I use all over my body to see how elastic my skin is... there are very few places on my body that I can pinch a couple of mm of skin and gently pull up.  Most of my skin, especially my thighs, the pinch is in inches ... sigh.  But this is changing ... thankfully.   

In robust good health to all,

Jan

Jan, it is nice to read a post where someone is happy with the way things are going in general and also that the first pulse was managed carefully and was successful!

Thanks Sarah.... I think this whole protocol is a marathon.  I'll be writing soon about my long-term thoughts/strategy ... thinking beyond just the immediate protocol.   Really appreciate your kind thoughts.

Jan

.

..

Hello all!

I finished my 2nd Pulse (first full-five-day pulse) April 19th.

My response:

--I had a regression in symptoms:  largely pain in center lower back; deep buttocks pain, especially in left buttocks and following the sciatic nerve down left leg.  (These were all original pain points that started my search for a clear diagnosis and cure).

--I have been experiencing quite deep fatigue.  Any antibiotic can have the potential to cause fatigue, but three antibiotics together (C.A.P.) might be expected to cause some significant fatigue.  Also, I know that I have issues (genetic) with Hemoglobin production...and the C.A.P. seems to be lowering my hemoglobin ---this, of course, can manifest itself as fatigue.   I have found some improvement in the fatigue by upping my daily dose of B-vitamins, especially Methylfolate and MethylB12.   I also allow myself much longer sleeps.

--One symptom that did NOT reappear was a great deal of stiffness in my torso:  Originally, I could not twist my body (think about twisting your body on the toilet).... this symptom was excruciating for me, but did NOT reappear with this 2nd Pulse.

Both the resurgence of pain and fatigue seem right in line with what is to be expected while doing this protocol, so I feel quite cheery.

I have added the Activated Charcoal at night (away from all meds/vitamins/supps) to mop up the die-off caused by the C.A.P.   I think this is a critical piece of the puzzle, so I am making it a priority.

I will start my 3rd Pulse in a few weeks... regardless of how I'm feeling.  I feel strongly that I just need to persevere.  

Thanks to all who continue to support us and help us understand how this protocol works.   I especially am grateful to Sarah for pointing out how symptoms can get worse before they get better. 

Cheers,

Jan

Hi Jan! 

Happy to hear you managed the full pulse without too much trouble- high ten to you👏💖

I must agree with the fatigue issue. I feel like it starts ok then by day 2 or 3 it creeps up and the last 2 day I feel decked and as if someone just injected with with serious sleeping pills! The fatigue then lasts 2-3 days after the pulse before levelling  out and I'm back to my usual fatigue due to MS and generally doing the protocol.

Though I'm not noticing many physical improvements yet- I have noticed my energy levels improve and my appetite is healthier too. Before pulsing I ate to fill up in order to keep medicins down and now I'm eating for the joy of food!

I'm curious re the charcoal you're talking about. Could you poss please explain what it does and how you take it/ where you get it from and dosages?

Thank you

Kiki💖

Hi Kiki!

Thanks for your kind words and support.

Activated Charcoal is listed in several places on this site (please note the dates of the posts; some are old):

http://cpnhelp.org/publicimages/allsupplementschart.html

http://cpnhelp.org/activated_charcoal_porphy

http://cpnhelp.org/activated_charcoal_and_bo

http://cpnhelp.org/activated_charcoal_powder

Basically, I think about Activated Charcoal like this:  I'm taking a BIG load of antibiotics that is killing bacteria, and the cells the bacteria is in will lyse and spill a bunch of toxic stuff into me.... I don't want to reabsorb the toxic stuff while it is transiting my gut, so I take the Activated Charcoal.... and it will bind all this crap until I excrete it.

The KEY thing to remember about Activated Charcoal is this:  It catches and binds everything it touches.... So, you must take it AWAY from all Antibiotics/Medications/Supps/Vitamins & Minerals.   I adhere to a 2-hour window on both sides of a dose of Activated Charcoal.

Sources for Activated Charcoal:

https://www.amazon.com/Natures-Way-Activated-Charcoal-Capsules/dp/B0006LCQ4Q/ref=sr_1_1_sspa?keywords=activated+charcoal&qid=1556746043&s=gateway&sr=8-1-spons&psc=1

https://www.amazon.com/Organic-Bulk-Activated-Charcoal-Powder/dp/B07JGCCTJ5/ref=sr_1_fkmr0_1?keywords=activated+charcoal+and+bulk+supplents&qid=1556746080&s=gateway&sr=8-1-fkmr0

Hope all this helps,

Cheers,

Jan

56 y.o. with possible dual diagnoses that I am working to confirm this year:
Ankylosing Spondylitis and Scleroderma
Serendipitous discovery that Doxycycline relieved pain/stiffness/soreness during a trip to Africa
Have started Doxy + Roxi; waiting full 3 months to pulse Tini.
Have most of supportive supplements in place for many years including NAC.

Thanks Jan!

I so missed that unhighlighted section  for supplements!

So would you say it's safe and good to take it just before bedtime? Also it states 2-4 gram per day but most capsules have only 300+ Mg dosages per capsule I see. Would that still help with binding the toxins/waste?

Kiki

Hey Kiki--

I take about 4 capsules (Nature's Way)-- which a little more than one gram.  For me, I think this is enough for the time being.  I do not want to be constipated on this protocol.  I want all the stuff I am killing to exit quickly and easily.... 

Any amount of A.C. is going to bind some of whatever is in your gut.  A small amount will bind less than a large amount.  

You'll laugh, but I take the capsules in the middle of the night when I have a bathroom break.  With a big glass of water.  It's the only time I have in my schedule that is very far away from taking meds/vitamins/supps.

I also have the loose powder, and you can just stir up a teaspoon or so (don't have the dose at hand) and swig it down.  It's a bit messy.  The powder can blow around easily.  But the powder doesn't taste like much of anything.

Activated Charcoal IS constipating, so I would titrate up the dose.  Start small and see what your response is.  

I also take quite a lot of Magnesium during the day and before bed... this does help with any constipation issues.

Cheers,

Jan