Rick is considering Tysabri...

Folks,

Rick met with his new Neurologist at Stanford, and the Doctor has suggested Rick consider Tysabri - and - is OK with him staying on his CAPi protocol.  In fact, he's evidently going to have a conversation (or try to), with Rick's Doctor in Sacramento.  Plus, this Doctor is going to provide Rick a prescription for Ampyra, something his old Neurologist refused to provide for some reason.  Rick also mentioned that the Doctor is aware of clinical trials at Stanford around remyelinationi.

I think Tysabri is scary, but, Rick is eager to get some abilities back, and Tysabri is known to do that, with some folks (about 1/3rd as I recall) - getting as much as 2 points improvement on the EDSSi scale.  Obviously, my concern and fear as his father is secondary to Rick's decision.  I am still concered though!

Rick is fully aware of the risks of Tysabri.  As am I.  If anyone here is using that stuff, I would appreciate hearing of your experience with it.

Best & Highest Regards,

Tom C

Hi Tom!

Your son Rick is disabled, sure ... but he is no fool.  He knows that there are risks and he has heard that there are benefits.  I know quite a few people that are on Tysabri.  If he has not yet gone to secondary progressive, then he may well do well.  I certainly wish him well.  Will you tell him that from me, please?

 Smile

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Tom, I thoought you said that Rick had now been diagnosed as SPMSi.  I know somebody on the east coast who had one dose of Tysabri before it was pulled about ten years ago.  By the time it was eventually allowed he was SPMS and so was not alowed to have it..........................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.

Hi Sarah,

Well - he was diagnosed that by the neuroi he has "fired."  The new neuro he is working with at Stanford, has suggested Tysabri.  Rick is getting tested for the JVC virus or whatever it is. 

That suggests that either SPMSi can be treated with Tysabri (and I've seen some clinical trials where they were testing it on SPMS - but just started looking) - or that his new Neuro believes he is RRMSi not SPMS. 

His new Neurologist sounds very much more open minded.  He, per Rick - doesn't think Rick should stop anything he's currently doing (CAPi, Wahls diet, clemastine) - rather, he thinks he should do more.  He's also written Rick a prescription for Ampyra.  His last Neuro appeared to hold that over Rick's head - e.g. he refused to write that prescription when Rick didn't stop his CAP protocol.

He's also talking with Rick about a clinical trial for some treatment to help with remyelinationi.

Everything I've heard from Rick suggests this Doctor is very much more open minded.  Rick deliberately sought out a referral to a Neuro at Stanford as he figured a Doctor associated with a research hospital may be more open minded.  It appears he may be correct.

So, while I'm a bit concerned about Tysabri - the JVC tests - and this Doctor's attitude both are reassuring.  And of course I can be concerned, but it is Rick's decision to make.

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

Well, he sounds like a good sort odf neuroi and much better than the one I  had and never want to see again!...........................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.

Tom as you are aware JVC virus can be fatal. Now it's only MY OPINON.... Underline highlight etc etc but it will be only a matter of time before a person who was negative for JVC will test positive once on that treatment... It could take a year,two five years but they tend to test positive after a while.

also, just from reading your posts over the past few months Rick seems to be treating his condition from many angles!! The only concern I would have is that you may begin to over treat something...if that is possible! Ricks body has to metablise a lot of stuff! Remember food has its strain on the body also and with the antibioticsi, supplementsi  and other stuff and now maybe Tysabri .... Is it getting a bit too much!

anyhow I said I would give my penny's worth here.

regatds

D

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

I was on both CAPi and Tysabri through August. If you have any questions regarding this, please private message me. I am more than happy to discuss with you.

-Jennifer

- Jennifer Hopeful

MSi Dxi 2003
Rebif 2003-2007, Copaxone 2007-2011, Tysabri 2011-Present
NACi started 4.30.2013
CAPi started 7.24.2013: 200 minoi daily, 1000 amox daily, 250 azith MWF
First pulse 10.17.2013: 1500 metroi 1 week/mont

Hi Darren,

Oh - I hear you loud and clear.  I am concerned too of course.

That said - this is Rick's decision and he does understand the risks. 

The only things he's done thus far - big picture, are:

1. CAPi Protocol and supplementsi as directed by his Doctor in Sacramento.

2. He added the Terry Wahl's diet to the above.

His new Doctor suggested Tysabri - and at the least they are going to screen for the presence of the JVC virus.  He may not be able to actually take Tysabri if he tests positive.

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

Hi Jennifer,

I did as you suggested - e.g. sent an private message.

I'm "only" Rick's Dad - and while I'd like to think he would listen to my opinions and weigh them in his decision - that has not proven to be true in many cases!

At the least they are now pre-screening for the JVC virus.

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

hi tom, you might get confirmation from consultant that you could develop the JVC virus at any stage during treatment with tysabri.... I do know they monitor it over here on an ongoing basis while on treatment...

regards

D

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

It's the JC polyomavirus.  As in "J____ C____, this virus causes a lot of cancers!"  Yes, that's what "polyoma" means: "-oma" = cancer, and "poly" = "many".

I wonder what screening test they're using; according to Wikipedia, "the virus is very common in the general population, infecting 70 to 90 percent of humans".  Are they really going to discard 70 to 90 percent of their market, or are they using a screening test which isn't very sensitive?

Anyway, the name of the virus should not be ignored.  Even if patients escape PML (an overwhelming infection with the virus), they might get enough of an infection to give them cancer ten years down the road.  Tysabri is a new drug; its long-term consequences have yet to be seen.  For the nature of the threat, see:

http://www.nature.com/onc/journal/v22/n42/full/1206959a.html<

and in particular the final section, "Association of JCV with human cancer".

Hi Norman,

Thank you for posting this, and I will share it with Rick.

That said, Rick is being told by his Neuroi, and per Rick, his Doctor in Sacramento, that Tysabri might be a good thing for him and is at least something that you can do while doing a CAPi protocol.

I've tried telling Rick that he's being too impatient with the CAP protocol - and he should give this a couple of years before he makes a decision to do something like Tysabri.

Unfortunately, I'm "Dad" - and not as credible as both of his Doctors in his estimation. 

My take is if he's gonna consider Tysabri, he might as well consider the chemotherapy approach as well - e.g. kill or ablate the immunei system and rebuild it.

I don't have a say in his decision, the best I can hope to do is to educate him, and at times the bandwidth or data rate between us can get very slow!  I will forward your post to Rick within a few days.  I have to space my emails and comments out to have any hope of them having an impact!

I swear he's still a teenager!  Someone should hire him while he still knows everytihng...

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

Well done ! if it stops relapses or put on hold this disease well done for trying tysabri.

i have followed for 2+ 1/2 years this site and i still do not see people recovering and being full of joy and i dont believe they (the happy recovered ones)all moved on with their happy lives or that more years on abxi are needed.

i have also followed this protocol for 2 years myself with no much success.

my advise (many of you will not like this) use immunosupressants - they wont cure you but they will stop relapses and will make u feel better

take care xxx

 

MMHHPP

RRMSi since 2010. Asthmai sufferer during  2008-2012 - Free of asthma since started  Wheldon protocol- october 2012 doxyi 200mg, Azytrom 3x week, NACi 1200g day and vitaminsi-  January 2013 started Flagyli pulses. i s

Hi MMHHPP,

Well - I don't think anyone here would say you don't have a right to express your opinion!

I'm a bit concerned about Tysabri - honestly my take is that Rick is being impatient, and that Tysabri is a pretty risky decision.  He was on Copaxone but stopped.

The CAPi protocola appears to have stopped his relapses - nothing else he's tried has done that.

If he's going to consider Tysabri - I've suggested he take up the possibility mentioned in other posts (there was a study in the UK and in Canada) - of using Chemotherapy to "kill the immunei system" and then rebuild it.  The risk profile for that approach appears to be similar to Tysabri - (at least after 2 years on Tysabri - reported as 1 in 75 chance of getting PML) - but the results appear to be better in that a larger percentage of people see fairly dramatic improvements.

My preference is that Rick hold off for another year or two - and give CAP and his new diet (Dr. Terry Wahl's version of a paleo diet) - more time to work.  He's not that patient, and it is his life - so whatever his decision I will "have his back" but of course.  At least to the extent I can - if he becomes more severely disabled, as can happen with PML if you don't die from it - I may have to consider long term institutional living arrangements for him.  I'm of course hoping and praying that if he does get OK'd for Tysabri - that that never happpens and he has great success with it.

Best & Highest Regards,

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

MMHHPP,

According to your signature, you've been asthmai-free since you started Wheldon protocol and yet you say you haven't improved?

The protocol is meant to kill the Cpni and stop the progression. It's up to your your body to "improve", which means healing. The protocol doesn't heal your body. Have you done anything to promote healing?

Immunosuppressants put me in my wheelchair. Over use leaves the body wide open to secondary infectionsi which can cause a relapse. Drugs, like Tysabri, which warn people who are prone to infection not to use them (huge red flag) are to be avoided. This type of short-term solution has long-term consequences.

And I will be here 24/7 to counter your pro-immunosuppressant B.S. Trust me.

I may still be in a wheelchair, but am far more functional than when I started. I have had huge improvements in quality of life, I work full-time and am soon to start my own business. Things I could not have done without the CAPi. If I never walk again, so be it. I can still have a fulfillling life.    

I must agree with Jen here: this site is to do with getting rid of a C pn infection rather than getting rid of multiple sclerosis.  Since MSi is believed to be started in some people by C pn, they should find that they are no longer having relapses but they will still need to work at the healing.  I had to work at mine though I must be honest and say that my asthmai just disappeared..........................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.

Must second sarah and Jen..

I may not be on the CAPi antibioticsi but I have addressed this Cpni infection the best I can with herbs, supplementsi and diet! I must say been on Avonex for years only made me suffer with weekly flu symptoms and my alround year cough and asthmai like feeling! 

Since I started addressing my Cpn infection which was confirmed by infectolab in Germany and also (lymes) woops sorry to you know who! I have not suffered another relapse in 3 years essh and never suffer for coughs or breathing issues in winter time!

I do agree that Cpn may only be part of the solution for some but it is part of the problem for all!

Repair is up to your body. I have a life time for mine to happen and it will.... Never lose faith in what you believe in... I believe that is the Cpn playing with your mind knowing it is been defeated!

Happy easter to all bunny's out there

Darren

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

Hi Folks,

I want to thank you all for chiming in on this subject.

Rick is going to continue his exploration and "research" of Tysabri, and is open minded enough to consider all points.  He is more than a bit impatient to see physical improvements - he wants to be less disabled, and Tysabri could provide that.  I'm hoping to slow his decision down and to provide some options as he considers this path.  I mentioned the "chemotherapy" approach - aka the hoemotatic (sic) stem cell approach.  The mortality for either Tysabri or this approach is about 1% - seems a very high risk to me.  They both have some success in returning peoples abilities - about 1/3rd of the folks on Tysabri see as much as a 2 point edssi improvement.  The UK and the Ottawa studies I believe report a higher success rate with more improvements - the kill your immunei system and rebuild it with some of your own stem cell approach to be specific.

As his Dad, I'm a bit fearful of both - and would like to see him give his CAPi and Wahl's approach more time.  He's young, and has had a really nasty year personally, losing his "wife."  He is very anxious to get better if possible and as soon as possible.  On top of that, he has folks with lots more credentials than I - his new Neurologist AND his Doctor in Sacramento treating him with CAP - apparently are both OK with his trying Tysabri assuming he doesn't test positive for the JCV virus.

I'll be continuing my discussions of this subject with Rick - on a low key basis, because as his "Dad" - I don't always have that high of a "data rate" in communicating with him.

Thank you again for all of your comments and  insights.

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

Hi Tom!

I have just spent some time composing and posting about vaccines ... and specifically vaccines for children.  It's a hard issue for parents because you are taking a decision about someone else’s body; albeit someone you treasure beyond measure.

On this issue - which is Rick's issue - you are saved the aguish and the responsibility of having to make the decision.  The decision is not yours ... so breathe a sigh of relief.

Smile

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Hi Supaguy,

Yeah.  I've said as much in several of my posts in this thread.  It is Rick's decision.  As his Dad, I can be concerned, even frightened a bit.  That's my perogative.  I can absolutely attempt to further Rick's education on the subject - and folks posts here may well prove helpful for that purpose.

The more I read about how careful the monitoring is of Tysabri, the more comfortable I am with Rick deciding to go that direction should he be tested to be free of the JC virus.

I'm still of the opinion that he would be better off letting CAPi and his new diet have more time to work for him.  Tysabri apparently, like all the other drugs, only slows down the relapse rate and rate of disability progression.  I recall some time back reading that it actually improved disability for about 1/3rd of the folks who were treated with it, and by some 2 points.  That would be pretty big time from Rick's perspective.

Perhaps the best news of all is that Rick's new Neuroi - seems very open minded and has told Rick to keep doing his CAP protocol.  That Neuro also is apparently involved in lots of clinical trials, including some around remyelinationi.

I will not "breath a sigh" of relief about it not being my decision - I have already breathed a sigh of relief that his relapses appear to have stopped or drastically slowed down due only to his CAP protocol.  A full year with no relapses after 8 or 9 years of steady and nasty relapses.  Given that - and given it's early for both his CAP protocol and his new Wahl's diet - I think he is being too impatient to try something as risky as Tysabri.  The mortality rate after 25 months on Tysabri - is at least "historically" (pre-jvc monitoring) - is over 1 in 100. 

Thank you for your words of encouragement - I'll keep my "Dad's" perogative to worry and be a bit concerned about his doing Tysabri.  Fear is a very positive emotion when properly harnessed.  Fear drove me to find out about his Gluten issues - and likely prevent his dying probably 3-4 years ago.  Look up Gluten Ataxia some time - it kills quickly when not caught in time.  Fear drove me to search the internet, scouring it nightly - until I finally found out about CPNi etc.  Fear can be a paralyzing emotion to be sure, and must be reigned in - but I don't believe it should ever be dismissed.

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

Once again, Tom, I reiterate my wish that things work out well for Rick, whichever way he goes.  He might or might not consider himself lucky to have choices.  With choices comes angst and wonder.  For me, I don't have those choices ... so ploughing forward with CAPi is easy.

In my locality, there has been double blind clinical trials of Tysabri on secondary progressive MSers.  I know two of the ladies on that trial - one of them lives close to here and I regularly dive with her too. We have seen each other over the last couple of years; both of us have gone downhill ... which goes to show, wherever your name is on the alphabet: MS sucks!

Anyway, if Rick is not yet secondary progressive, there may be something in it; if he's crossed the line, then it’s probably not worth the high risk.  Whatever he does, I wish him good luck.

Kind regards,

 Smile

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Hi again Supaguy,

I have no idea if Rick is spmsi or rrmsi.  The Neuroi he fired (rightly so, in my estimation - that "Doc" rabidly opposed Rick's CAPi protocol) - has labelled him or diagnosed him as spms.  His new Neuro, on the other hand, is apparently more than willing to treat Rick with Tysabri - and is a very knowledgeable Neuro - at Stanford, a highly respected research hospital, who is also leading a number of clinical trials. 

Rick may get the opportunity to be involved in an "open label" remyelinationi study - he's talking about that.  He hasn't yet qualified for Tysabri - so my fears, which won't prevent me from supporting Rick's decision, may be unfounded.

I know you have nothing but the best wishes and "prayers" for Rick!  And, I am very encouraged by the apparent halting of relapses.  That is pretty remarkable - and the only sensible explanation is his CAP protocol.  He could be at the start of a much more complete recovery - and just too impatient to give it more time.  If his Neuro is not being duplicitous - he's in favor of Rick's continuing everything he is already doing, CAP, Wahl's, clemastine and all. 

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

Don't do it Rick.

Hi rcquilter,

Thank you for writing.  He has tested positive for the jc virus - now they are going to test the level of the virus.  He may not qualify given that.  When you write here responding to this - you are actually writing to his Dad (Tom).  Rick is extremely interested in getting physical improvements soon - and his new Doctor, a Neurologist at Stanford - brought up the possibility of Tysabri.  I'm faiirly concerned about that option - but, I'm a bit more comfortable with it given the active monitoring they are now doing.  All that said, it might be a moot point, given he may not qualify based on their screening for the JC Virus.

I am of the opinion that he is being more than a bit impatient with his CAPi protocol - (or should I say CA protocol or just CAP?).  It has, in my opinion, been the only thing that has worked at all since he got MSi.  He has not had a major, or any, relapses in a full year now.  Before he's had 2 to 4 a year.  He badly wants to be able to be more independent - he's "chomping at the bit" to regain his capabilities if he can.  He may be offered the opportunity to join a clinical trial for yet another monoclonal antibody - this one evidently designed to instigate remyelinationi by turning Oligodendrocytei precursors into full grown Oligodendrocytes.  The mechanism of action is not the same as Tysabri - which evidently works to keep your immunei system "out of your brain" - which is what in some cases evidently lets the JC virus wreak havoc.  All of the initial testing, and the first phase I trial - have shown no toxicity.  All of the folks on any of the 5 different doses - experienced improvements in their motor function.  I'm not opposed or concerned about that trial - given it's apparently safe - and it doesn't keep the immune system out of the brain like Tysabri does.

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

Tom, Rachel is right: if Rick takes Tysabri whilst carrying the JC virus, he might end up as one of the people why Tysabri was pulled ten years ago..........................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.

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