Just FedExed My Records to JH.

A board to discuss Revimmune as a potential therapy for multiple sclerosis

Just FedExed My Records to JH.

Postby Xenu » Fri Apr 18, 2008 5:59 pm

Hello,

I am brand-new in this forum. Just today, I FedExed a CD of my brain / spine MRIs to JH, and the rest of my paperwork should be there within 7-10 days. I am crossing my fingers for everything to go smoothly and for my insurance to comply with paying for the protocol.

My stats:
-27 years old, turning 28 next Tues. (on 04/22)
-Have probably had MS for around 2 years, but wasn't aware / diagnosed until 9 months ago
-Am willing to undergo the HiCy protocol NOW, because I haven't yet "accumulated any disability," and that's EXACTLY how I want to keep it.

Nice to meet you all.

-Valéria
Last edited by Xenu on Fri Apr 18, 2008 6:13 pm, edited 1 time in total.
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Postby Xenu » Fri Apr 18, 2008 6:12 pm

Oh, and PS: My neurologist does NOT approve, but I intend to do Revimmune anyway.
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Postby Jamie » Fri Apr 18, 2008 7:37 pm

Very similar story to us.

We leave for Baltimore tomorrow.

What is your insurance company?

Little known fact - if an insurance company has approved this procedure for someone else on their plan they HAVE to approve it for you.
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Postby Xenu » Fri Apr 18, 2008 7:49 pm

Hi Jamie,

My insurance plan is Blue Cross & Blue Shield (Student Plan, PPO).

Do you know if they have ever approved anyone for this treatment before?

Also, who is your insurance carrier, if I may ask?
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Postby Xenu » Fri Apr 18, 2008 7:50 pm

(I can switch plans by the end of the summer and strategically buy a plan from a company that I know has paid for the Revimmune protocol before if I want / have the right info., since here in MA insurance companies cannot refuse anyone who attempts to purchase their plan [nor can they raise premiums] based on any pre-existing condition.)
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Postby 777 » Sun Apr 20, 2008 5:58 am

packedby776 wrote:Oh, and PS: My neurologist does NOT approve, but I intend to do Revimmune anyway.


You are aware there is a 3-7% fatality rate with this treatment?

I have had MS for 15 years. my EDSS is only 1.5. At that even my neuro is againt me having this treatment because i have 2 children under 2 years old.

I sent in my records, but not sure if I want to risk it anymore. this is not something easy to go through.
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Postby chrishasms » Sun Apr 20, 2008 6:21 am

1st and for most the attitudes of people are really starting to piss me off.

No offense but a few of the folks on here, and you know who you are, are real downers.

Pam Anderson would be there naked and waiting and you would bitch that you have to take your clothes off yourself.

There is no such death rate due to HiCy. http://www.chrishasms.com/blog.html

There is only one death from HiCy damn near 10 years ago and it wasn't MS.

I knnow of people who have had this with BC/BS...it'll take a month. If you have active lesions you are in. The lack of disability might hurt because they are using this on people who have had no luck with any other meds.

If I die in 3 weeks this is worth every penny because I have not felt this good in 4 years and clarity wise 25 years.

In short, I hope none of you doubters ever get Leukemia. You'd need to tell the doctors you couldn't take the treatment because it's Cytoxan.

As soon as I am dying, or I hear of someone else who is from HiCy, I'll post again. Other than that I think some of you guys can answer all the questions yourselves even if it isn't the right answer.

Sorry, JH spent the money figuring out this may work for MS, it's up to us to do the rest. I took 10k out of pocket still, with insurance covering it!

Bob just cause I'm getting better now doesn't mean you can let up on these folks :P :D! (Tovaxin and Revimmune seem to work Bob!!!!!)
Last edited by chrishasms on Sun Apr 20, 2008 6:30 am, edited 1 time in total.
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Postby 777 » Sun Apr 20, 2008 6:30 am

I am afraid because of my low EDSS score I might not qualify and the fact i do not have any active lesions. Still MS is always progressive. I like the OP do not want it to get to the point where we do have any disability.

I have talked to both Dr. Hammond and Carrie. neither came off to me that would not qualify at all, as a matter of fact Dr. Hammond told me it might be an advantage that I just had a baby and then to have treatment.

I guess I'll have to wait and see if I qualify, They said I should hear back from them this week.

As for the fatality rate, doesnt matter if you have MS, cancer or a stubbed toe. Chemo is chemo and there is a risk. The reason there is no fatality rate with MS is because it hasnt been used on as many MS patients vs cancer or other disorders.
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Postby chrishasms » Sun Apr 20, 2008 6:44 am

Whatever either of them said, Carrie or Ed er Dr.Hammond, I assure you they are 100% right.
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Postby Xenu » Sun Apr 20, 2008 7:36 am

You are aware there is a 3-7% fatality rate with this treatment?


Actually 777, the fatality rate is 1%, not 3-7%. And I am pretty sure that the fatality rate for crossing the street is higher than for HiCY.
Last edited by Xenu on Sun Apr 20, 2008 7:55 am, edited 1 time in total.
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Postby pvns2005 » Sun Apr 20, 2008 7:50 am

HiCy should be the first treatment for MS not the last resort.

Got the call Friday from JH and they want to see me for the evaluation of the HiCy protocol in May.

Chris, man we need to write a book once we pull through this recovery. Once I get a solid date I will let you know.

And BOOOO!! to all the Chicken Littles out there.

PEACE....

Chris S.
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Postby Lyon » Sun Apr 20, 2008 7:53 am

.
Last edited by Lyon on Mon Nov 28, 2011 4:20 pm, edited 1 time in total.
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Postby Xenu » Sun Apr 20, 2008 7:53 am

pvns: Good for you. So do they have a specific trial starting in May?

Also, here's a question (that I also plan to ask Dr. Kerr): can the high-dose chemo involved in this treatment weaken the heart at all? Has anyone asked? If so, a reply would be greatly appreciated.
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Postby 777 » Sun Apr 20, 2008 7:57 am

I am glad I found this website. I am on another MS forum and 99% of the members there wont even acknowledge this treatment when I mention it, some have even gotten on my case for even considering it.

I feel really postive about this. I think the chemo for this treatment is much less frightening vs a facing a life time of MS and disability.
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Postby Xenu » Sun Apr 20, 2008 8:11 am

777 -

Exactly.

We are all already dying.

The question is: do you want to go out inch by inch, slowly, painfully, progressively losing function until you can't even take a shit on your own...or (if you must die---which you probably will NOT by doing HiCy anyway) would you rather have it be quick and at least somewhat merciful?

Personally, the prospect of being catheterized and in a wheelchair is much more terrifying to me than high-dose chemo is.
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