This Is MS Multiple Sclerosis Knowledge & Support Community

chrishasms wrote:This from what I understand is what causes most of my spasticity, clonus, hesitancy, and foot drop. I do have fatigue, and this effects my ability to keep a conversation at the end of a day, and I do need a nap every now and again depending on what I'm doing. I take Amantidine for it and it helps mildly.

Hi Chris,
You hit on a subject which I think is going to be especially interesting to see the data coming from HDC studies, and that is, what exact symptoms are caused by MS specifically and which symptoms "come with the package" as part of the spectrum of autoimmunity?

An almost obvious assumption would be that fatigue originates in the brain and therefore would be specific to MS. Although fatigue might in fact originate in the brain, fatigue isn't unique to MS and is a common factor in most autoimmune diseases and therein lies, what I consider, Tovaxin's biggest shortcoming.

Tovaxin ONLY removes the self reactive cells specific to MS. When Opexa makes a similar treatment for T1 diabetes, it's ONLY going to remove the self reactive cells for diabetes. The problem is that a lot of people have more than one autoimmune disease and a way higher number of people diagnosed with MS have symptoms of other autoimmune diseases which haven't been diagnosed. Being treated with HDC will, or at least should, leave recipient free of all autoimmune diseases. Despite being driven by different Th responses, I'll also be interested to find if people treated with HDC find that allergies and asthma disappear.

I guess that's just one of many reasons it will be interesting to follow Brett's progress through this!

Bob

Thanks Brett. I remember you talking about needing a transfusion a afterwards but I figured they'd just grab some from the Red Cross............wait a minute, they intentionally eliminate your immune system because it's fostering the MS process and then they stick some of your own blood back in afterwards?

Bob

Huh, now that you said that, I've had Diabetes, Psoriasis, in my family history and I myself have Asthma. Hay fever kills me in the Spring and Fall as well.

I never even thought about getting rid of a vast spectrum of things I may have.

Just got off the phone with the Dr's nurse and they are still waiting on a hospital to play ball I guess. They told me I'm on a list which is good, and to call back in a month or two again.

Thbbbbbbppppppppppt!

chrishasms wrote:I've had Diabetes, Psoriasis, in my family history and I myself have Asthma. Hay fever kills me in the Spring and Fall as well.
I never even thought about getting rid of a vast spectrum of things I may have.

Don't let the Revimmune people know that. They might charge you more
Bob

Bob,

Are you still asking about the origine of the transfusion blood? The blood was from the blood bank or red cross. No need to use my own or a family members. They are confident that the blood from the bank is the safest possible.

Brett

Nice typo "origins".

HiCy wrote:Nice typo "origins".

You aren't doing any worse than I am, you already answered the question, I just didn't look closely enough!

HiCy wrote:On the blood issue they just use donated blood.

You'll learn to love that "Edit" button, I have! Rather than apologize for my mistakes, I erase them!

Bob

See how you are, did you see how dumb my initial question was....I mean seriously.....I was so fatigued I guess!!(eternal excuse lol)

Ya gimme back my #$%^&@*% blood!

Gees

ChrisHasMS wrote:Ya gimme back my #$%^&@*% blood!

I'm not an expert on the processes used by the blood banks, but if I remember correctly, both platelets and red cells can be separated from white cells out of whole blood. Theoretically, I suppose there could be a few white cells remaining as well as some antibodies so a transfusion from a donor might be the best route.

NHE

Hey Bob,

Do you have a current email address for Dr. Gladstone?

It just dawned on me to ask why this can't be done off label.

Hi Chris,
Check your PM's.
Bob

Hi Brett-
I will probably sound goofy, but... My dad just finished up chemo for AML. He did essentially the same thing- bring everything to 0 then build back up-Neupogin worked wonderfully for him, interesting though how they are treating it this way, My dad's platelet count was 3000 when he was dx with AML, and I don't know now I'm rambling, I think... What irony right?
Kelli

Chris,

I think that Dr. Gladstone has always used this treatment off label. I didn't think he was part of the Revimmune trials. He has been treating patients for quite a few years with this protocol.

Well I got a message with him inquiring just about that. So now I wait..........

My only question is if it's being done that way, why am I only number 65? I would think it would be a Pied Piper Scenario at his office.

AHA!!

"Douglas Gladstone, MD" to me
the FDA will not allow for off-label off protocol.


Phooey again to the FDA!