How did YOU get here?

Looking over the comments and the member list, I see so many names we've become familiar with over the last months and years. Some of us migrated here more than ten years ago, when our community left its little corner on This Is MSi.  Some of us arrived in the last few months.  There's a common thread, though, whenever you arrived here, looking for a cure for your 'auto-immunei' diseasesi - tenacity.

I'm not asking who referred you to cpnhelp.  I'm just curious about what it is that got you here.  Stubborn refusal to believe some stock phrase your doctor spoke when s/he diagnosed you?  Fear?  Rejection of being pigeon-holed? 

What is it inside you that made you break out of the passive patient mold and come here to find your way back to health? 

In my case, it was my conviction that I had 'caught' something.  I was sure I was sick, had a disease.  Not some undefined incurable decline, but a sickness, like a cold.  I refused the idea of losing my physical abilities and mental acuity and I refused MSi medications that promised me little but terrible side-effects.  I searched the internet literally EVERY waking hour until I found a tiny reference to 'the holy grail of MS medications, a pill', which led me to an article about the ingredients of that trial pill, which included antibioticsi.  An internet search of 'MS and antibiotics' found an article on Sarah Longlands and Dr. David Wheldoni and I finally got some validation that what I believed deep inside my being, that I was simply sick with a disease that could be cured, was true. 

Pure determination and stubborn pigheadedness connected me with Sarah, David, my brilliant physician and the protocol meds.  I jumped through all the hoops, hurdled all the obstacles and battled all the naysayers.  Being stubborn, refusing to be the victim, and the need to always know the 'why' of everything is what got me here.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Dr Thibault spoke to me at a CCSVI patient-advocacy event I participated in. He recommended I read the information on this site. I was impressed with the content I read, but found it complex and hard to navigate because I was suffering cognitive impairment and fatigue. Some time later I arranged testing for CPni, and commenced CAPi. I was a frequent visitor of this site, particularly posts related to porphyriai. I had symptons of porphyria for years, and these really flared up under CAP. 

---------------------------------------------------------------------------------------------------------------

Doing Thibault protocol (NACi/minoi/roxi/tinii/nattokinase)...but considering morphing to Stratton protocol

The shear terror and fear of watching one of my three precious sons rapidly decline from MSi.  None of the drugs seemed to be helping, and while going of gluten seemed to slow things a bit for Rick - it was not enough.  3 years in - he is stable or slightly weaker, but not rapidly declining any more.  His prior 3-4 MRIs have been "pristine" and show no further signs of progression.  He is on a multiple anti-biotic protocol as well as a non-gluten ketogenic diet, and tysabri, soon to switch over to orecluzimab when it is released by the FDA.

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

 

For most of my working life I was a clinical microbiologist, a medical graduate who had studied microbiology and neuropathology. When Sarah was diagnosed with Secondary Progressive MSi by a very unpleasant neurologist and told, basically, to go away and die, I sat with her, that evening, my best friend in the world. I suddenly realized that Sarah had a covert chronic bacterial infection. All the dots joined. I dealt hands-on with infectionsi every day. I knew that people with MS have raised levels of TNFα, a proinflammatory cytokinei which is most commonly induced by bacterial endotoxini.

 

C. pneumoniae had to be a possibility. Pioneering studies by various groups in Finland and the US had found evidence of chronic infections in various systems. It is a very difficult organism to work with.

 

A short internet search on PubMed took me to the Vanderbilt paper:

 

Sriram S, Stratton CW, Yao S, Tharp A, Ding L, Bannan JD, Mitchell WM. Chlamydia pneumoniae infection of the central nervous system in multiple sclerosis. Ann Neurol. 1999 Jul;46(1):6-14.

 

That same evening Sarah (protesting slightly) began doxycycline.

 

Both Ram Sriram and Chuck Strattoni replied quickly to my emails. They could not have been more helpful or courteous.

 

All this was fourteen years ago. Since then Sarah has had no new MS symptoms. (I told the neurologist: he never replied. Apparently his professional gravitas was more important to him than a total reversal of prognosis in a patient with a disease which invariably worsens.)

 

One of the clues that the disease was caused by an infection is a curious mental state, almost certainly caused by bacterial metabolic products. (This is not uncommon in medicine. Both pneumococcal pneumonia and tuberculosis cause quite well-defined mental states.)  I have a page on this:  http://www.davidwheldon.co.uk/personality-change.html< 

 

 

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

Too right I was slightly protesting because I just didn't think it would work, but that night I took two doxycycline tablets: only the third time in my entire life I had taken any antibioticsi.  Normally after dinner we had both met up in David's study, above the dining room, but this time I felt an urgent need to go to bed, one floor further up: I felt very strange.  I don't fully remember much of the next week or so, but there was no way I would miss taking the doxycycline, because something was happening.  Two weeks later I was talking to a friend on the phone who remarked about how clearly I was speaking once more.  Since then I have never looked back and even though I stopped the protocol in 2008 I have not done anything but improve........................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

after years of taking what was given to me and feeling worse and slowly getting worse I decided to look into what was really going on with me. Every time I got worse before then I would have a heavy cold, sinus, a chest infection for ages ..... then Bang... an episode.... something else taken off me.... I think when I couldn't get up and walk for more then 10 feet the final straw came! It must be an infection.... it can't be my body turning on itself??? I started taken OLE and a few symptoms that was at me went away! So then I started to search the internet and came across the youtube video of Sarah and David .... I tried to get antibioticsi after testing positive for  CPni  via a German lab but my neuroi consultant said no!!! I was in a panic! I knew it was CPn but I couldn't treat it??? I decided that I would try to treat it naturally or with supplementsi/herbs as most medicines are derived from plants!!! Well that was my only thinking ...... to cut a long story short I am walking cycling rowing sailing completed the Camino last year and my eye sight has improved...

i do so put this down to my understanding that my illness is down to CPn and the way it can be KILLED. I hope this little story can help a little  In your faith that this disease will and can be beat

kindest regards

darren 

The Greatest Risk of all is Not taking the Risk...

Darren, you completed the Camino walk: very well done!  Did you do the French route or the Portuguese one? More to the point, did you see the holy dustbin swinging aloft in the cathedral?.............................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I was referred to this website by my GP>  Surprisingly enough he was a believer.  Then on came Aritho and Doxyi!  Still room for improvement but was able to go to a family wedding out to buy the dress which I would not have done without the protocal. Sounds simple enough to the average joe but for me coming up with the energy was putting me off of going outside the door. Thank you Dr D W.

 

The French way! And yes was lucky enough to see the swinging thingnebob in the cathedral... even went on to the church on the coast. The last place on the walk... it was in that film The Way with Martin sheen when he threw the ashes ... also got to touch the golden statue that holds saint james..

regards

D

The Greatest Risk of all is Not taking the Risk...

Now I am super jealous: you walked over a hundred miles!  How many days did it take you perchance?......................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

5 days to do 130 essh klm... it was one of the best trips in my entire life and I have traveled. I would recommend it highly... my dad died last year and I decided to just do it... by the way I am not super religious but found it strangely addictive to get up every morning and look forward to going for a 30 klm walk.... 

regards

d

The Greatest Risk of all is Not taking the Risk...

In my case, I was trying for almost 2 years to make some sense about my symptoms, it was the second time that I "stumbled" on dr Wheldon's and Sarah's video that made me to search for more information, and here I am. 

Diplopia, nystagmus, right facial weaknes, feeling VERY sick and fainting, chronic cough for more than 10 years, heart palpitations, skiped beats, heart area discomfort and pain, weak hands grip, minor pains in body parts, nausea, insomnia and many

Comment viewing options

Select your preferred way to display the comments and click "Save settings" to activate your changes.