This Is MS Multiple Sclerosis Knowledge & Support Community

Ian,

NO!! That is not how I meant it, although I got a laugh out of your response. I know the US postal system stole my chocolate. My package smelled of chocolate, it just wasn't in there.

I wasn't sure if you were being sarcastic or not. I didn't want to speak like I knew for sure you were going to Naples when all the while you were just joking around.

Like I said, I appreciate the fact that you sent me anything at all!

Too bad you will be so far away when you visit the US. Would have been great to meet.

Best Regards,
Brock

bromley wrote: Unfortunately, there is a strict dress code and shiny shirts are barred. Perhaps when you've smartened yourself up we can meet up some time in the future.

Thanks for the link Ian........wait a minute.....When I've smartened up?? I've been in Florida in July and I have smartened up enough NOT to do that again! At this time of the year the average temperature in Naples is about 3 degrees cooler than the surface of the sun.

I'd really like to pop into Naples and say hi but I paint a dashing figure in my shiny shirts....sort of a cross between John Travolta and an overweight, balding, addicted to the '80's lounge singer I guess that might explain a little about why my excitement in life is hanging around at a multiple sclerosis forum.

Bob

Also Ian,

Watch out for the mosquitos. They are horrible in that part of Florida. Even more so when you get close to the Everglades and Marco Island. I am a big guy and I am pretty sure I would be bloodless with in 30 minutes if I stood around in the Everglades.

They are so big that their bites feel like Rebif injections.

Brock

P.S. Bob and I are planning to drive down and find you. Shiny shirts and all. I hope that is ok

Brock,
I was in Ohio a couple of weeks ago and the temperature was the same there as it is here. It's just hot everywhere I think! We are, however, getting rain every day. We are happy about that, though, since we were in a drought!

Come on down and we'll have party wll Ian is here!

Lori

viper498 wrote:Watch out for the mosquitos. They are horrible in that part of Florida. Even more so when you get close to the Everglades and Marco Island. I am a big guy and I am pretty sure I would be bloodless with in 30 minutes if I stood around in the Everglades. They are so big that their bites feel like Rebif injections.
P.S. Bob and I are planning to drive down and find you. Shiny shirts and all. I hope that is ok

Thanks for not mentioning the tarantulas, vampire bats and monitor lizards Brock. We don't want our English guest to shy away from Naples!

If you pick me up on Friday we can go straight South from here on I-75 and on banging on Ian's door in 17 hours. I just dyed my sideburns black. I hope I can get the excess dye off my skin by then. Don't want people to think that Ian's "friends" are hicks!

Bob

Bob,

That sounds like a plan. We can tailgate outside his resort until he arrives!

I found some hair gel that I can use to slick back my hair and make it real shiny. That's classy, right?

Brock

Florida is almost my second home - this will be my 7th visit (one a year for the last seven years). You don't scare me with your dangerous animal stories.

My country has just experienced flooding of biblical proportions - nothing scares me (apart from seeing 350 pound Brock, Lyon in his shiny shirt and Robbie on his Harley in the foyer of the luxury hotel I am staying at).

Please, please stay well away from Naples.

Ian

Hi Brock,
Sorry it took so long to respond but in preparation for visiting Ian's exclusive resort I'm in the process of cutting the roof off of my coupe de ville and plugging the rust holes with rags and tar.

Heck yes I think greased back hair is high falutin'. I'm just envious that you have hair to grease back. Since this is a special occasion I'm going to tap into my case of spray on hair http://www.onlyhairloss.com/glh/?source=google

I just got off the phone with Harry Z and he said he'll bring the slim jims and pickled eggs for the trip down! I would think that a fancy hotel has a shower....we're going to be pretty ripe by the time we get there!

Bob

Indeed! What a great time we will have with Ian! Perhaps we could take him snipe hunting in the Everglades?

What a great product, that hair-in-a-can! I am glad to see that Harry is coming a long as well!


Ian,
That is a great tradition, going to Florida every year. I have gone quite a few times my self. Its a beautiful place to visit. I think I should like to go to Europe for a vacation though, at least someday (while I still can). I'd like to see London, and Paris, and the swiss country side/mountains, and germany, and Spain. Hopefully I can do that someday.

Brock

viper498 wrote:Indeed! What a great time we will have with Ian! Perhaps we could take him snipe hunting in the Everglades?

Ian has mentioned his love of the outdoors, I think he'd enjoy snipe hunting!

We'll have to go back through the posts and find the one which mentions where he's going to be staying.....he did mention where he's staying didn't he?

Bob

Lyon wrote:Hi Jean,
In reality what is considered the total "immune system" consists of a lot more than what we, who are concerned with MS consider it, but in the field of MS the lymphocytes ARE the immune system and the bone marrow is the parent....the creator of the immune system.

I know, you have polynuclears, monocytes, and many others. But I think several immune cells are involved in MS, not only T cells. For instance, B cells are targeted by some treatments being tested, and it seems to work. (I don't remember which one, but I think it's in phase III) I agree when you say T cells are main "attackers" but I think they're not alone.

What you're talking about, a total reboot (or the attempt) has been used on luekemia since the 1960's and was based on the assumption that the MS process is also reciprocated in the bone marrow, which would also have to be eliminated and re-created. The total reboot was the first thing that came to the minds of researchers and it's what they were familiar with. In truth, the lead researcher in the Stony Brook cyclophosphamide study is an oncologist and not the expected neurologist.

I still hope some more studies will show that total reboot is possible, but I've seen it wasn't 100 % efficient so far, whereas one could think it would be. That's why researchers are worried : if you total reboot immune system, and if you completely rebuild bone marrow with "clean" stem cells, why is the disease still active with some patients ? No answers are provided, because few studies were made, beacause the process is dangerous. (5% death risk). Here are some hypothesis, some of them I found on the web, some of them coming from my own thoughts :
- Maybe Inflammation is stopped, immune attack is stopped, but axonal degeneration goes on. This make sense as study authors pointed out that immune and marrow reboot was performed with heavily handicapped patients, many of them with SPMS or fast PPMS, where axonal degeneration is suspected to be dominant. They say total reboot would be more efficient on patients with early, inflammatory RRMS, but it's far too risky for them.
- Maybe reset patients are exposed again to that unknown environmental trigger, and catch the disease a second time. (if it's linked to your lifestyle, you're likeky to be exposed again)
- Maybe there's another mechanism involving something else than immune system and bone marrow, and that mechanism is not affected by immune reboot.
- Maybe the reboot was not done properly with patients who still show disease activity (hope this is the good one)

Anyway, if it proves to be efficient, it would be a breakthrough. A breakthrough I'd like to see for my grilfriend before it's too late.

Because the preponderance of abstracts/studies DO NOT reflect the results of simple lymphocyte elimination, almost the easiest thing to do is to read the wrong information and come to an incorrect conclusion.

And those studies don't involve enough patients to have statistical coherent results...

I know, you have polynuclears, monocytes, and many others. But I think several immune cells are involved in MS, not only T cells. For instance, B cells are targeted by some treatments being tested, and it seems to work. (I don't remember which one, but I think it's in phase III) I agree when you say T cells are main "attackers" but I think they're not alone.[/quote]Hi Jean,
I stuck with the term lymphocytes (white blood cells), which includes the T and B cells and encompasses what in the MS world is considered the immune system. Actually, to get into specifics cells which compose the lymphocytes, it sounds like you're more familiar than I am! Regarding "attacker" T cells, with MS I'd have to consider those those the myelin reactive T cells such as Tovaxin seems to remove.

If MS were the ONLY autoimmune symptoms someone had and we were also able to remove the B memory cells responsible for training the myelin reactive T cells, that might be considered a one time cure. At least to my way of thinking, the problem is that most everyone with MS also has symptoms of other autoimmune diseases, achy joints, fatigue, stomach problems, which it doesn't seem that something as specific as Tovaxin (at least in its current form) is going to alleviate, where it seems that the Campath and HDC "sledgehammer" approach, in theory, should remove all aspects of all autoimmune diseases.

That's one of the reasons I'm cautiously optomistic about Campath. Something which is supposed to be alleviating the total immune system should alleviate all the autoimmune diseases and NEVER increase the risk of another autoimmune disease.

Jean wrote: I still hope some more studies will show that total reboot is possible, but I've seen it wasn't 100 % efficient so far, whereas one could think it would be. That's why researchers are worried : if you total reboot immune system, and if you completely rebuild bone marrow with "clean" stem cells, why is the disease still active with some patients ? No answers are provided, because few studies were made, beacause the process is dangerous. (5% death risk).

Considering that only killing the lymphocytes is much less dangerous and more effective, I'm not sure why, in the case of MS, anyone would continue to consider the greatly added risks of stem cell transplant. Sure, I can see it with cancer where the problems are generated in the bone marrow but it's looking as if with MS the process is reciprocated after that point.

Jean wrote:- Maybe Inflammation is stopped, immune attack is stopped, but axonal degeneration goes on.

Of course we've all got to form our own educated opinions but I'm personally going to find that, like many other MS "factoids" that one is a seemingly obvious but misguided "myth". There are already lots of things which could lead us to believe that progression without inflammation is a myth, but in the world of MS the direction of one's opinion totally depends which studies they decide to place their faith.

Bob

Jean,

Interestingly, Campath depletes T cells and B cells. Here is a response from Dr Coles to one of my questions about Campath:

http://www.mssociety.org.uk/application ... 0&id=14320

Ian

bromley wrote:Interestingly, Campath depletes T cells and B cells. Here is a response from Dr Coles to one of my questions about Campath:

You need to quit enjoying life and come around here more often Ian. You're just a hotbed of information. I found that Accentia clip interesting last night and now this one. Damn good questions by the way. I've wondered those same questions for some time......

Dr Coles wrote:One explanation for the greater effectiveness of Campath-1H over antibodies that just deplete T-cells is that Campath-1H also depletes B-cells.

although I would have liked him to specify whether or not Campath totally eliminates all T and B cells or just certain types. Not that I am in the least disenchanted with the benefits of Campath1h but I have a tendency to believe it only eliminates certain types of T and B cells.
Bob

Lyon,

I'm off for a couple of weeks, but will rely on Dignan and yourself to keep the show going.

I've arranged to meet Lori at an exclusive restaurant in Naples in two weeks time.

I hope there won't be any welcoming party when I arrive in Miami on Friday morning. Only the sight of Harry Z and Chris55 at arrivals would make me get on the next flight home.

Ian

PS Brock - I'd gladly put you up at my London residence if you ever make it to England. Unfortunately, UK beds have a weight limit of 350 pounds, so I can't take the risk.