Alan has a question about his new anti-bodies!!!!
 

Now please don't laugh but when he brought this up, the first thing I thought of was "I'll ask the people on the boards".

Alan went back to the gym for the first time today (since he got home from the 5 rounds of IVIG). Today, he got his strength back and he went.

So he just got home and he's lying down and relaxing and I asked him "did you use the steam room". He said "No, I was afraid" I said "of the steam room??, why on earth are you afraid, it sweats out all your toxins, 5 to 7 minutes in the steam room will do you a world of good". (and he usually goes in the steam room anyway)

His reply: "I was afraid the new antibodies that I got from the IVIG would be sweated out of me and I would lose them". I started to laugh, then I said "you know, what the heck do I know, does a person sweat out antibodies??". Especially EXPENSIVE ANTIBODIES???? Might be a stupid question, might not.

So, while I'm sure he can go back into the steam room, he just want to make sure.

Thanks, Melody

Melody,

I have no clue! I just wanted to pop in and say when I read this, I was laughing so hard! But it is a legitimate question...I would probably wonder the same thing too.

See, I Knew All Of You Would Laugh!!!!!
 

If you think you're laughing, you should have seen my face when he first asked me. I had to hold my mouth closed.

But honestly, if you think about it for a moment, I mean, he wouldn't go into a steam room because he was afraid his anti-bodies would sweated out.

Don't we continuously make new antibodies? But if Alan has an anti-body problem, and he's not making GOOD antibodies, then it might not be such a strange question after all!!!!

SOMEONE JUST TELL THIS GUY HE CAN GO INTO A STEAM ROOM, and all the little nanobots going though his body aren't going to be jumping on the floor.

lol

mel

oh...man...
 

I cannot tolerate the steam room with my PN! It is amazing that Alan can!:eek:

But Mrs. D.
 

Can Alan go into the steamroom while he is undergoing IVIG???

Tomorrow Dr. Goldfarb is supposed to call up Alan and schedule his first home infusion. So before this happens he wants to go the gym and do his stuff.

So can he use the steamroom? Or do all the little antibodies end up on the steam room floor after all????

Mel

It's not a silly question, Melody--
 

--but to my knowledge, the amount of antibody that could be sweated out under steam room conditions is negligible.

Antibodies are specific protein chains--one of the reasons autoantibodies are sometimes referred to as "rogue proteins". They are rather large chain molecules and would not easily pass from serum/plasma through to the cutaneous levels--unless they had already, for some reason, been broken down into component amino acids, in which case they would have already lost their effectiveness as immune agents, anyway.

Think of it this way--if it were possible to sweat out large quantities of antibodies under hot/humid conditions, those people with autoimmune conditions would be flocking to steam rooms and the tropics to reduce their antibody titers, but there's never been any evidence I know of that increased temperatures/humidities reduce autoimmune symptoms. In fact, it IS well known that for many conditions of nerve, heat/humidity actually makes symptoms worse--heat is the enemy of nerve conduction (it tends to increase the electrochemical resistance of the nerve cell membrane and makes it harder for the ionic exchanges to occur). Well-insulated (myelinated) nerves can overcome this, but those with myelin damage . . .cooling vests are very popular among multiple sclerosis patients.

So, if he can otherwise tolerate the steam room, I don't see any reason Alan's visits there would make his IVIg less effective.

Thanks Glenn:

Now when I go and tell him what you guys on the boards said, I can feel comfortable enough to say: 'Go forth and sweat".

I didn't know that heat is the enemy of people with PN.

I will tell him to be careful. I honestly don't know how much time he has already spent in the saunas and steam room. Basically, I know he lifts weights, (he can't go on treadmills because of his foot ulcers).

I'll tell him that it might make his PN worse. We wouldn't want that to happen, now do we????

Thanks much!!!!

Melody

I cant spend any time under an electric blanket without a tremendous increase in pain. I have'nt tried a sauna or dry room since I have PN.

Now isn't that odd, I just read a post somewhere on these boards, where a guy who has PN has an electric blanket (because his feet are always cold), and some time before he retires for the night, he turns the blanket on (low, bu it's on!!!). Then he is able to sleep.

I gather that PN affects people in total variables.

Still learning all about PN. Probably will until someone finds a cure.

melody

Have you EVER heard...
 

of a person REALLYsweating BULLETS? They don't. They can't.
No where have I read of anyone sweating blood either.

Immune Globulins have a 'life span', just as red and white blood cells do.
Immune globulines are a blood component, and have life spans like that of blood cells. The good IG's do in any individual's system varies from person to person. One can require it every week, bi-weekly, monthly up to once a year.

As I understand it, all blood and blood products[parts] such as IVIG, leave your body through your renal system. Your docs will take blood tests to see if the ivig has changed certain numbers [as it should] and also to see if adding it has placed an undue strain on that renal system. The strain, should there be any, is because the IG's infused - are a foreign entity put into your system, and a lot have been added, meaning extra stress and strain for your body. Should there be too much stress, as shown by the blood tests, a risk assessment will be made and decisions about whether to continue will also be made. The symptoms of renal system failure are few, and should they appear it is usually too late. Therefore the blood tests are essential in determining whether IVIG is useful for a particular person or not.

I hope that this clears up some confusion. - j

I am copying and pasting Dahlek's posting. About blood test and checking the renal thing.

Dr. Goldfarb supposed to call us today. I will (most politely) bring up the blood tests (I do hope she plans to do some). I mean, what are the odds, that a person who studied under Dr. Lantov is not going to know about blood work after IVIG infusions, right???

I also just asked Alan "how many times have you gone in the steam room since you started your gym thing?" and he said "more times than I can count". I then asked him "so heat doesn't have any affect on your PN?" and he goes: "are you kidding, in fact, it has the opposite, it makes me feel good".

So go and explain this!!!!!!!

---------------------------------------------------------

Update:: Dr. Goldfarb's office called and scheduled him for an appointment on April 12. Her assistant Zoya informed me that the doctor is still setting up the home infusion thing.

Don't know how long it takes to get these things approved but once it is, then we shall be off and running!!!

Don't ya luv when I say "we are doing this, and "we are doing that".
It's like we're TEAM NEUROPATHY!!!!

Melody

Melody..
 

I haven't seen you post in a while. Are you ok?

Billye

Hi there Billye: How are you doing??

Yeah, I'm fine. I responded to the thread about dentistry. If you want chills up your spine, read the thread. IF not, DON'T!!!

I hope you are doing okay too!!!

Alan has been to the gym twice this week and is doing just fine.
Oh, for all you microwave lovers out there (and I'm one too), I had to throw out my microwave. Why do you ask???

IT INTERFERED WITH MY SATELLITE CABLE BOX!! That's right!! Every time I cooked something in the kitchen, the signal would go nuts in the living room. Now the outlets being used are all on the left side of my house (the microwave and the tv vcr, and cable box. So I figured Aha, it must be overloading the circuitry or something! And every one of my things were plugged into a surge suppresor. I figured, if I did overload it, it would trip the surge thing. Never tripped anything. So I changed where I plugged in the micro and the same thing happened. Screwed up the living room cable box tv signal. It didn't happen to the other boxes in the bedroom.

So I went on a message board where you ask scientists all crazy questions. I also mentioned that I picked up my micro at an estate sale about 2 years ago for 5 bucks. While it wasn't brand new (IT LOOKED BRAND NEW). It was an older model (can't remember the brand, I'm getting old aren't I???), but I explained all about what was happening in my question to the "Ask a Scientist" message board.

Well, guess what?? A scientist answered my question. He said "please do not use this microwave again before you have it tested, it might be leaking" And for the past couple of days, whenever I pressed the start button, I heard a click or something. I just chalked it up to it's being an older model, etc.

But when I saw the tv signal going kaplooey, (even though I used a completely different outlet on the other side of my kitchen, it still screwed up the living room cable box).I immediately stopped using it, unplugged it, and tossed it.

I'm hesitant about buying another one. And I will never purchase a used appliance ever again. This was my first used microwave oven and it served me for 2 years. I would never stand over it for any length of time while I was cooking something. I didn't only reheat stuff, I cooked stuff too.
Why do I miss it?? Not only for the food. It does cook stuff very very fast. But I used to put my microwavable heating packs in it and put it on my back or shoulder. Today, I missed it!!

I'll probably hunt around in my local appliance store and buy one soon.

So if your microwave starts screwing up your tv signal, either have it tested or toss it.

Anybody else have this happen to them???

mel

Microwave
 

Hi Melody - my microwave used to interfere with my cell phone! Had to get enough distance between them...

Thats the only cooking appliance I ever use (living on Ensure has its pluses! But I do use the microwave to heat broth once in a while) - microwaves are very inexpensive these days..... and I think much cheaper in the long run to use then the stove etc. for appropriate items..... try any of the eletronic store sites, and I think also stores like Sears etc. will match any price out there......:)

I don't pay for gas in my apartment. The rent includes the gas. Around here in Brooklyn, gas is cheap but still enough, when it comes free, well, I never really used to bake, cook,etc. I used my micro. For Everything. Even making stuffed artichokes.


And the best is that Alan learned how to use it. I mean, he could heat up stuff if he came home later etc. Now just imagine him trying to learn how to use a stove. He can use the kettle for his tea but that's about it.

Anyway he's yelling at me to get off the computer.

Hope everbody is coping with their PN. Mine's been buzzing sometimes. But thankfully today, all is quiet.

take care,
Melody