A CCSVI Patient Log: All About Steve

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Sharon » Wed Nov 18, 2009 11:08 am

Joyce,
Oh, my gosh HINI? I am so sorry for you and for Steve. That flu can be pretty nasty stuff. I hope he is on the upswing. I have a friend who got the flu - it has taken him about three weeks to recover -- he was a healthy person until the flu hit him.

Take care
Sharon
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Postby cheerleader » Wed Nov 18, 2009 11:15 am

Joyce-
Prayers to you and Steve...I am so sorry. My son had the flu for three weeks, and Jeff had a touch of it and it was BAD. A healing blood brain barrier hit with a tough virus is not a good situation. I know you know this, but garlic, vitamin D and monolaurin are good antivirals and OK to take with the tamiflu and amantadine. Hang in there, dear heart.
never easy, huh?
xo,
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Dovechick » Wed Nov 18, 2009 11:21 am

Seems to me that your Steve is a trouble magnet too, but then he is contending with so many more things than a lot of other people, all that mercury and all those bugs... I do hope that things turn a corner for you now that you have the virus on the run.

I've talked to Ella today about the stenosis and she is interested, I've also heard back from Dr Simka and hope to be going to Poland with her shortly.

I'm certain there is a problem for her as she has visible signs on her face... thread veins on both her cheeks. She also has apalling circulation in her legs, not sure what that shows, but it was actually that which caused me to do my google search.
What would we do without the internet.

You are in my prayers dear friend and Steve is enveloped with positive energy. I will be watching with baited breath for those signs of progress coming your way.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby CRHInv » Wed Nov 18, 2009 11:23 am

Joyce, I am so sorry to hear of the trouble you guys are having. Please know that I am sending tons of good thoughts your way. Someone here has a great quote about it always looking darkest right before you succeed, Cat? I hope that is what is going on here. I hope that light transforms in to a giant glowing sun. Soon!
Take good care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby whyRwehere » Wed Nov 18, 2009 11:45 am

So, will Steve be tested for H1N1? My husband is a sinking ship when he gets ill, so I am torn between having him vaccinated and having him not be. I think the vaccine might not be helpful to him, but the illness would definitely cause him trouble. What has everyone else been doing? Anybody out there with MS who decided to get vaccinated?
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Postby mormiles » Wed Nov 18, 2009 11:55 am

Steve's neurotologist is against flu vaccines, period. So, instead, he prescribes Amantadine for patients like Steve. Amantadine is somewhat effective against type A influenzas. In the past when Steve has gotten the flu while taking Amantadine, it either has never quite gotten off the ground or it has never developed into a serious flu. Steve won't be tested for H1N1---Dr. X says that's the flu everyone in this area is getting these days.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby radeck » Wed Nov 18, 2009 12:34 pm

I'm really sorry to hear about Steven's infection, but glad that he seems to be getting a bit better maybe? Do you have an idea how you contracted your various flus?

Every pathogen is only as bad as the protection against it is weak. Since we live in an area with currently very high H1N1 prevalence, we carry disinfectant with us all the time (pen-like alcohol spray from CVS) and use it when I touch doors. When I'm in meetings I try to keep a bit of distance from people when they talk to me facing me. Basically trying to avoid direct contact through droplets and indirect through people touching things after touching their nose or mouth, then us touching that, then us touching our nose or mouth. The first couple of times you do that the routine it may seem a bit crazy.
Last edited by radeck on Sat Jan 16, 2010 8:03 pm, edited 1 time in total.
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Postby LR1234 » Wed Nov 18, 2009 12:54 pm

I am so Sorry to hear about Steve Joyce. I hope he recovers soon x
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Postby mormiles » Wed Nov 18, 2009 1:29 pm

Thanks everyone. Radeck, Steve and I have taken the precaution of not taking the cup at Holy Communion. Other than that, I started wiping down my telephone, desk, calculator, mouse, and keyboard at work with a bleach-based pre-moistened wipe. Unfortunately, I started too late. You see, I'm the one who gave Steve H1N1, and I'm sure I got it at work.

In late September, I prepared for the flight to Stanford with some antiseptic wipes and iodine ointment. Turns out the ointment was brown (not white iodine), so Steve wiped it off as soon as he put it on. The really hilarious thing is that I turned out to be the person on the plane that everyone was paranoid of. I started coughing and sneezing, couldn't stop, and just gave up and pulled my blouse collar up to cover/contain those obnoxious expulsions. I had symptoms that day and the next, and I took an OTC medication for the symptoms. After that, I had a gloppy throat for weeks and got more and more tired. Good news is that I'm over it now. Bad news is that I gave it to Steve.

If I had the time, I would hunt and hunt until I found some white iodine ointment or cream to swab around my nose and mouth. If I knew I would be in a situation where wearing a surgical mask was in order, I would soak it in an iodine solution first. After this flu killed so many at the end of WWI, researchers found that iodine worked better than anything else available to prevent the infection.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby wonky1 » Wed Nov 18, 2009 1:44 pm

I know everyone has their favourite flu remedy but elderberry extract worked for me. There are lots of studies that are out there.
I recently shook of H1N1 in a few days with it.
As an aside, this huge link
<shortened url>

Is all about elderberry and its protective effects for endothelial cells.
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Postby radeck » Wed Nov 18, 2009 1:47 pm

Hi Joyce, sorry to hear, but don't be upset with yourself about it, you didn't know better and were only trying to help!

No need for the iodine, alcohols (such as the standard propyl one you can buy super-cheaply at any pharmacy) kills all viruses like H1N1 and should be safer than iodine. The spray bottles I talked about are super handy. They cost about a dollar at CVS (I buy them in 3-packs for $4), look like a transparent pen with a penclip so you can keep them in your shirt/purse, hold enough alcohol for 50 or so sprays, AND can be refilled with the propyl you get at $5/quart. We don't leave the house without them.
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Postby whyRwehere » Wed Nov 18, 2009 2:04 pm

I'm afraid my husband works in a school...a real minefield of infection. I think we all got H1N1 last February, before Mexico got it...at least that was the worst flu I ever had...couldn't do a thing for 2 weeks, temp, aches, coughing, so tired...it was horrible, which is why I am nervous this time around...
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Postby catfreak » Wed Nov 18, 2009 4:59 pm

Hi Joyce,

I'm catching up on all the post and am really sorry to hear that you guys have been ill. My son and his fiance both had H1N1 about 6 weeks ago. I didn't see him for several weeks for fear of the flu. He said it was terrible stuff.

I pray Steve gets better soon and you both see better days ahead!

Take care,

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby mormiles » Tue Nov 24, 2009 9:08 am

Thanks all for your comments. Steve is coming along, slowly but surely. He's not sleeping in the day very much, and the fog is about gone again. In the evenings, he still seems to have a little life left in him. Balance and bladder remain fickle.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Steve

Postby Dovechick » Tue Nov 24, 2009 9:10 am

Oh that is good news, I do hope it continues to improve.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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