Cpnhelp.org

Any particular reason why you are reporting on your grown son's appointment, instead of allowing him to do it himself?

Hi Jen,Rick has a hard time typing - I told him I was reporting it - this is not a big deal one way or another.  His typing has never been all that good - and his MS has effected his fine motor control in his hands.  He can do it himself if he decides.  I noticed folks commenting on someone suggesting he keep a journal - and quite an argument going on around that.  Kind of a tempest in a teacup.  It's all good here - he has started down the path of being on the protocol.  If he sees my comments and doesn't like them for some reason - he can tell me so here or in person.  So - to any and all folks who may have comments about whether Rick is keeping a journal - or whether I'm reporting or he's reporting - don't make a big deal out of this either way.  It's not a big deal - he is extremely strong willed and very much in control of all this - I was simply excited to report this - and honestly due to how stinking busy he and Jamie are - and his difficulties with typing - I don't expect you'll see much posting from Rick. I mentioned this to Jamie and Rick just now - e.g. whether I'm reporting or he is - and your comments about it - they said to mention that Rick is both a full time student and a newlywed.  He is extremely busy - and for that - it means he's like twice as busy as other folks in a sense - it takes him 2.5 hours each way on "handi-ride" to get to and from school.For Rick, posting is difficult - and takes time.  I will continue to post - and to encourage him to if he can find the time - but again - typing is harder now for him - perhaps that will be something that improves for him over time.I'm going to suggest that folks focus on the content here that I originally posted above - as it is all very new to us - talk of mythlation, getting rid of mercury, oxcalates - etc. is above and beyond the CAP protocol - and it all sounds very well reasoned.  If I got the good Doctor's thoughts and approach right - it is designed to make the post pulse or whatever herxheimer reactions far easier - and of course I do hope that is the case for Rick as does Rick himself and Jamie.Best & Highest Regards,Tom

It's a bit like seeing the movie or reading the book.  I think I'll wait for Rick's version- 'the book', so to speak.  I am looking forward to his posts, after reading his first thoughts here.  (I feel a bit like a voyeur and don't like the feeling much, so will hope Rick posts soon. )

Hi All!As the person dealing with - in my case - MS - and all the items I need to take care on a daily basis which does not include education nor daily travel - I say it gets overwhelming at times and I miss details.  Should any of my family or friends have the inclination to post the details of current treatment and their observations on reactions and progress I would certainly welcome it.However, everyone I know is so busy with the 101 items in their own lives that I am grateful they take time to visit and be helpful as time allows.So Tom Clark - KUDOS - for keeping a good record and sharing with those of us here who are very interested in the details and wishing the best for you and your sons.  Very exciting that Rick is on day 0. All the best,Louise_C03-23-2013PPMS  - May 2009, working with Naturopath since 2009, taking listed supplement_s, plus LDN 4.5 and L-Arginine Plus.[had CCSVI in 2011 - helped a little]Doxy 200 mg, Azithromycin 250 M - W - F and NAC 600 mg. Just started Tinidazole - 500 mg 10-13-2013  

Hi Louise_C,Thank you for your note - and - everyone else too!  Please folks - we are making a bit of a tempest in a teapot here.  No need to take umbrage at my reporting for Rick or not.  Rick and I have shared this journey in a very real sense since he first learned he has MS 10 minutes after I got laid off from a job.  He is an astonishing individual - dealing with some very tough health issues with such wonderful grace and courage he makes me extremely proud. After 6 long years of scouring the internet - < I never thought to put infection and MS in a single google search > - I found this wonderful site with all you wonderful, brave folks - willing to share your experiences, thoughts and advice.  When I found out about David Wheldon I also found out about an operation that can reduce spasticity.  I sent both of those items to Rick and Jamie - Jamie gets full credit for latching on to and getting excited about the Wheldon / Stratton / CAP stuff.  SO = here goes something that I originally was only going to write to Jen - and did - but - it's innocuous enough to share with everyone - to give you folks an idea who Rick really is - who I am - and why IT"S ALL GOOD IF I HELP RICK and HELP TELL YOU HIS STORY - he'll be around when he can find the time - no worries there - but please lets all start focusing back on the big picture - read my comments below please - and from now on stop being "hover mothers" or what ever it is that gets you focused on what are really picayune matters. I wanted to comment here rather than in public - perhaps I should have even responded here in the first place.You don't know Rick - or you wouldn't even have used the phrase "rather than allow him" - I don't have to or need to or get to allow him to do anything!  He is - as I mentioned - very much his own person and totally in charge of his life.Here's a story - that might help you understand US a bit better.  I'll keep it a lot shorter than it was.  I got a phone call at 8:30 - on a Friday in late may of 2007 - and was told I was laid off.  10 minutes later - Rick is told over the phone of his MS diagnosis.  At that point we <as his Dad I get to say we - no questions asked!> had been trying to find out what was going on with his foot drop - which was a bother then - but he could still walk pretty well.  Probably a disability scale of 2 or something.  Today - 6 short and scary years later - he can barely transfer from his wheelchair to the car seat - his eyesight has been effected with "diplopia" - his fine motor control for his hands has gone.  He has other fairly serious cognitive deficits - according to him not me or Jamie - such as having a hard time remembering words at times - it goes on.  While all this was going on - at first - he was working two jobs, going to school, and carrying on a social life with a young lady who was his high-school sweetheart.  She stuck with him for 2 or so of those 6 years, then left.  Rick's sheer courage and determination to proceed with his life - while he has been rapidly declining - has been awesome.  I would do anything I could for him - including taking his MS from him if it were possible.He met his lovely and loving bride 3 years ago - they plan to give me grand children (well - they plan to have kids - but I see it as give me grand children!  My first) in 2 years.  I can chart a trend - 6 on the edss scale after 6 years.  Where might he be in another 10? Well - fortunately - we found out about gluten 5 years ago.  I told him - he really didn't believe me and the bit of a scoundrel he can be decided he wanted me to go ahead and buy him all new food.  So he did try it - and it DID help a TON - he probably would have been bedridden by now - if not already dead from gluten ataxia. Now - 12 weeks ago or so - we found out about this.  It is the first real ray of hope centered around his MS he's had now for the last few years - to stabilize vs. just slow down.  Thank God.  Really.I'll tell you what - I'm not going to worry about niceties - e.g. whether or not he posts or I post - I honestly don't care - nor - and I can guarantee you this - neither do Rick or Jamie - about that.Instead - and please don't take any or all of this wrong <the above comment about niceties> - I am going to Thank God and Pray - both - for finding you folks - and you all are wonderful - going through having MS, CFS, FM or whatever - and sharing your experiences - like I originally said - helping us - to understand what CAP is, how it has effected you personally - sharing your own hopes and fears - and the gory details of your sometimes rocky road to recovery.  You have given Rick, Jamie and I hope - and courage - to pursue this course.  You have given us knowledge - of what Rick might expect to have to go through - and what we, mostly Jamie but I do play a big role in his life with support for his college, etc. - caregivers - have to help him go through.Don't fret about the small stuff - and in this context - whether or not Rick reports - or I report - or Jamie reports - it's all good - that's the small stuff.  The big stuff is - 1. We found this and you folks (I've been doing most of the searching for stuff for the last 6 years, and believe me - many many long hours scouring the internet - and really - I found this - though I discounted it at first vs. an operation - it was Jamie who emphasized and latched on to it - causing me to more thoroughly research it - since then we have ALL been educating ourselves and each other as fast as possible).  2. We found a knowledgeable Doctor Rick can work with - interestingly - I was shopping around after he and Jamie and I discussed it - ran across Dr. Powell quite by accident and originally unrelated to this website - but it was Rick who made the very decisive decision to go to Dr. Powell - after I told him of a couple of alternatives.  An example of his being in control - you don't need to worry about that part. 3. He starts soon - and the signs are all very positive this will work for him - family history of related disorders (RA, bronchitis, peripheral neuropathy, asthma for Rick - response to NAC thus far, other data points beyond this) - and 4. He is now very likely to be around to raise his kids - and may even get to chase'em around.Jen - Best and Highest Regards - sincerely - but please don't worry about the nature of our Team - which does include Myself - as well as Rick and Jamie.  It's all good here - and I really hope your journey is smooth and your recovery complete - and that life treats you well.Again - Best & Highest Regards,Tom

LOL - MacKintosh.  Well said.  For some it is help and support and for others it is intrusive and invasion of privacy. 

I think Rick is lucky to have such a supportive family!  And I would be he knows that too!  Please continue to post, Tom, as it is a help to many.  I am sure Rick will tell you when he no longer wants you to do so!  I am so glad he has begun his journey.  I wish you all the best!Lori

Hi Lori,Thank you for writing - I appreciate your comments.  Ricky is a very - even astonishingly - lucky young man.  And - I am just a small part of that luck.  Yes - he was unlucky to get MS - but....  Lucky to do so in this century - lucky and charming enough both - to win the heart of Jamie, who loves him deeply - she is a wonderfully loving and beatiful young lady - and a nursing student, soon to graduate at the top of her class.  Rick is pretty sure that he would not have met her if he didn't get MS - he's said so to me.  Lucky that we found out about Wheldon (an OLD ScienceDaily article as I recall I ran across) - and doubly lucky that Jamie is a very bright young lady who pays close attention - she emphasized the CAP / Wheldon stuff while I was at the time focused on the operation I've mentioned - if she hadn't done that - well - it may have slipped by us.  Lucky he decided - after a conversation about alternatives I was looking into (asking a Doctor I know to consider CAP treatment, a web search that identified Dr. Powell - and a discussion of his background and connection to cpnhelp.org that I found out after finding him) again - Lucky Rick decided we should work with Dr. Powell - a very quick and decisive decision on his part.  Lucky we can afford this Doctor and the treatment out of pocket.Thank you again Lori for you kind and encouraging comments. Best & Highest Regards,Tom

Hi Lori,I agree completely.  Rick has MS - MS does NOT have Rick.  And - as his father - (I've been at his side since the moment he was born) - when I got to hold him for the first time - I've been dying to find out where MS lived so we could call it out and kick it's butt, the little punk - freakin' germ for gosh sakes.  Seems like we are very likely on the right course for that to happen.I wish everyone here - and including those "lurkers" - such as that lady who did the vblog then came here a bit - could find their way to stabilization and improvement.  MS can kiss my anatomy!Best & Highest Regards - and may your journey and recovery be smooth and complete.Tom

While I don't think there's anything wrong with you posting on Rick's behalf, be aware that this treatment can be rather demanding on the patient, and requires a certain level of commitment.  That's not something a parent can really provide for a grown child (though there's nothing wrong with trying).

Norman,Thank you for writing and for your concern - rest assured - Rick is one committed individual. He continued taking Rebif far longer than he ever had to in the face of "bone deep pain" induced by that drug every two days.  I have no doubts he will remain committed to his course of treatment - he is "obstinate" as Sarah put it - has an extremely strong will as I've experienced. BTW - Folks have frequently told me I should be committed!! Best & Highest Regards, Tom

Rebif is conventional medicine, though.  It's funny, but a lot more people are willing to endure physical pain than are willing to be laughed at for trying something that popular opinion disapproves of.  In any case, the thing to do if there are such doubts is to start off slowly, and that seems to be what the doctor has ordered anyway.

Hi Tom,One of the things that you wanted some feedback about was methylation.  My doctor also tested me for this.  I suspected that I was a poor methylator from my reading of Terry Wahls book and so I was already taking methyl b12 and methyl folate.  Anyway the test did show that I am a poor methylator.  My doctor has given me a protocol to begin to address this.  I haven't started it yet because I've read that it is difficult and I was having enough trouble keeping the antibiotics down.  I hope to begin this soon.In the meantime I have read a number of posts on this site where members have been quite positive about methylation protocols.  In particular I think that good methylation is helpful with detoxing.Hopefully someone who has more experience can add to this.   

Tom, looking forward to hearing about Rick's progress and the recommendations from Dr. Powell. Your kids are blessed to have such a dedicated, resourceful family member on their team, and lucky to have this extended family here willing to share their real-time wealth of knowledge. Sometimes...life takes a village! LynnRenee