MediTest
Submitted by Jan Figtree2019 on Tue, 2019-02-26 21:10

My story begins in late 2016 with mild sciatic pain (left leg).   I did not go to the doctor for this as it had come and gone for at least 20 years.  (I also had other symptoms that I’ve ignored/just lived with my whole life.) But this time it was different with the pain rapidly progressing until I was pretty much bent over and could not walk, sit or turn in bed.    I was also very, very stiff. I still refused to go to the doctor (even with great insurance) as I had not had much luck in getting clear diagnoses and logical treatments for other medical issues.

 

It was interesting to me and important to note that anti-inflammatories did NOT help with this terrible pain. Nothing seemed to mitigate the pain, and I still didn’t go to doctor (I was pretty sure they would prescribe some heavier duty pain meds as well as Prednisone---which I did not want to start).

 

I started and stuck to physical therapy because it seemed somewhat helpful without getting me hooked on meds that were not clearly linked to a clear diagnosis.  I did get some (minor) relief from the exercises and the “dry needling” therapies they used.

 

But I needed to resolve this terrible pain more definitively because I was due to go on a once-and-lifetime trip to Africa with my extended family in May 2017.  Lots of walking and climbing...

 

While my sciatica gradually improved over the next five months, I was never clear of the pain, and was worried I might have to just skip the trip.

 

About a month before going to Africa, we all went to get our Malaria prophylaxis, and I chose to do Doxycycline---even though I would have to take it every day for many weeks.  The alternative was a malaria drug that I had had a bad reaction to many years previously. Doxycycline seemed well-tolerated even if it was much longer term.

 

From the very first dose, I was almost pain-free.  I didn’t put it together at first, but after a very long flight and a few days in country (constantly taking the Doxy) and climbing in and out of tall vehicles, I knew something spectacular had happened.   NO PAIN with Doxycycline. It was clear to me that I would have to research and investigate further when I returned home, and buy some more Doxycycline.

 

After much research/reading, I surmised I might indeed have an INFECTION of some sort, and that infection had provoked several autoimmune diseases for which I had had symptoms most of my life:

 

--Scleroderma

My symptoms:  

--hardened/thickened/darkened skin largely on thighs and forearms (thighs implicated since puberty)

--mild Raynaud’s as a child and young adult…

--fingers stiff/puffy since giving birth 20 years ago

--acceleration of collagen accumulation after each successive infection as an adult

--etc.

 

--Ankylosing Spondylitis

My symptoms:

--very stiff torso most of my life (evaluated by physical therapists)

--pain deep in buttocks and down legs (intermittent, almost always going away upon rising and moving throughout the day)

--pain/stiffness starting at bedtime and almost immediately mitigated after getting up in morning and moving around

--etc.

 

So, I might have two autoimmune disorders provoked out of dormancy (genetic propensity?) by a C. pneumoniae infection???

 

I am in line to see a Rheumatologist for both these autoimmune disorders:  to run tests and get x-rays and possibly an MRI. Treatments for these autoimmune disorders seem largely immunosuppressant --this is the opposite of what I want to do.  I want to heal my immune system not suppress it, and I think the C.A.P. will do just this.

 

And so, I started the C.A.P. in earnest on January 4, 2019.   I took all of December 2018 to slowly titrate up with Doxy and Roxithromycin.  Jan. 4th, 2019 was my first full day of these two antibiotics (two doses of each a day).  No negative responses to either. Some positive responses: a softening of hard skin on both forearms/thighs.  And almost no pain at night … but still stiffness…

 

As I write this, I am on Day #53 of the Doxy + Roxi.  I am staying on these two for the recommended three months before starting pulsing with Tinidazole (I am not starting with Metronidazole as I want to avoid as many unpleasant reactions as possible).

 

To keep my gut healthy while on all these antibiotics, I take:

--Plain yogurt

--Mutaflor (probiotic)

--S. Boulardii

--Slippery Elm (herb/capsule)

--Marshmallow Root (herb/capsule)

--Burdock (herb/capsule)

 

Additionally, I work hard to protect my liver, by taking:

--Taurosodeoxycholic Acid (TUDCA)

--Milk Thistle Extract (Herb Pharm)

--TMG  (Trimethyglycine)

 

The Recommended Supplements:   I have been on all of these for quite a few years (including N-A-C) before ever coming across the Cpnhelp site.  

 

Finally,  I am deeply grateful for all the people who the people who founded, maintain and participate on this site.  You have given me much hope that I can regain and keep my robust good health.

 

Cheers,

Jan

Blog comments

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

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

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!

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.

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

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.

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

 

 

Elizabeth Anne

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

 

 

 

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.

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

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.

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!

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.

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 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.

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. 

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

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💖

Hi Kiki

Strangely on this site one feels so connected with those going through similar traumas. I don't know you but feel I do and it was nice getting that post addressed to me and my daughter-in-law Sonal. It is just five days since she started on Doxy and hopes to get on to Rox in a few days. Yes I know no way will she touch alcohol during the pulses with Met and even a few days before and afterwards.

 

How are you feeling after your first pulse? Can something be done by way of treatment for your eldest? You need to beat the MS for him if not for yourself. I do hope you begin to see improvements in yourself soon.

Sonal has two kids and my son, a devoted husband, who luckily for the family, works from home, is often around to help her and the children. In spite of everything Sonal keeps a lovely home and is always bright and cheerful. I cannot wait for the next few months to pass and for Sonal to do her first and then second pulse.

My best wishes for all in this community and special thanks to Sarah who is so caring and so responsive.

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

Yes I think all on here have and are becoming a family/community bound by trying to help ourselves and others. We allow ourselves to open up and reveal inner thoughts without fear of judgement too so the line of communications are honest and clear. I feel so supported and comforted here. No question is ever too silly to ask.

My eldest has CP from birth so sadly not much can change for her re that condition but I do get help from my partner and others. I'm used to fight for her- just never had to fight for myself like this before so all feels very unchartered but I was born a stubborn soul so all will work out Im sure.

Re my pulse: I just got an intense headache on the first day which I also got with my first day of taking the Doxy. But it disappeared after the first day. I decided to drink a lot more water to flush out any bacteria die off. I felt an increase in appetite too which I hadn't expected as the last few months food had been so at the very end of my list. Normally Im very into eating and cooking healthy but all that had slipped and I just ate to be able to tolerate the meds and persist with the protocol.

Midway through the pulse I did find myself feeling weaker physically and more tired so needed a bit  of daytime naps. This feeling lasted few days after the pulse but soon that feeling disappeared and I was back to my usual weaknesses due to having MS at all. I'm thinking and belive that extra weakness and tiredness is down to the pesky bacteria being killed off and my body ridding the rubbish. Kind of like when you detox and end up a bit sluggish and/or ill as the toxins leave your system/body.

It's one pulse at the time for me and each may differ to the other one and how others are being/ have been affected by them. This year of 2019 is my year of my being under construction for a sparkly new me a la 2020.

All best to yous and tho it seems far down the line pulsing, time really does fly and me starting the protocal 7th of Jan seems ages ago now.

Kiki💖

Hi kiki

keep your chin up. With first pulse over maybe by the time you do another  you may start feeling better and will be on the way to saying goodbye to MS.

you know I always felt that there was some herb or some medicine out there that could cure MS and to me it w a kind of miracle when I stumbled upon the Wheldon Sarah u tube and then the Wheldon website with the protocol. I couldn't believe it. 

Now I am hoping the mess work for everyone and for Sonal of course. Yes I am also looking to a new family 2020.

cheers

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.

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.

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 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

 

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.

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!

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.

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

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.

.

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.

..

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.

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

 

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.

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.

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

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.