persistent infections. now ivig

[opie74]

Hi all. I have been gone for a while.  I had a very resistant staph infection in my sinus and the systemic. I had a picc line with iv cubisin and Invanse.  Four days after the picc line was out, I tested positive for another staphylococcus.  I started minicycline. Had to stop it after a week and get treated for salmonella.  Now I am back on it and have a week to go.

The ENT, hemotologist, and the MS doc want to start IVIG treatment. However, the infectious disease doc that was treating the staph does not. My MS doc when ahead and ordered the day a month for three months of IVIg. I pray it works. If you add up all the days (sometimes just 1 at a time) that I have been healthy since last Thanksgiving is it almost 8 weeks.  That does not Count MS symptoms. :-(

If you remember I took care of my dad as he passed from cancer this year. Last week we buried my uncle who also passed from cancer.  As I sit here my throat is on fire and I have a slight fever. I guess I have another wonderful virus on top of the infection.

I have never been a woe is me kind of person, but I am at the breaking point. I want to enjoy the holidays this week with my brother and his family. All 6 kids are a riot. Not sure if I am ready. We are flying Christmas Day to PA to be at my in laws until the 4th.

Please pray for wisdom and health. I am sick and tired of being sick and tired. It is not a good example for children.

[calamfred]

Just wanted to say I will keep you and yours in prayer. It really does take a toll having a chronic (or several) illness. Then you add in acute infections, stress, being a caregiver, dealing with loss of loved ones, etc...hopefully things will settle down for you soon!
Take care,
C

[Lulu54]

I'm bumping this to the front page, hoping gypsywmn will see the IVIG discussion...
.

[michelleric]

Hi Ann,

The cost might be lower since you are having the infusion at home.  That's not an option for me.  Also te cost depends how much IVIG you r given. For MS it is a large amount, and how low your bloodwork is for immunodifiency is another reason the amount can change.

I also get pre-medicated w every infusion, as I've had a couple reactions during the infusion.  I am sure the cost is stil going to b $$$$. But maybe not 36,000.00.

Sorry about all your symptoms these days. Hope they lesson soon,

Michelle

[opie74]

As amazing as it might sound my MS has been "sleeping" for a while now.;that is until about 2 weeks ago.  It really showed up last night at a painting class.  I had only gotten 3 hours of sleep on Saturday night, and Sunday was brutal.  Today was better, just my eyes don't want to focus on anything small or close without crossing.  I was trying to thread a needle (to repair poor stuffed Donald Duck), and there were 2 needles about 2 inches apart!  I did finally get it done!  That made the almost 3 yr old squeal with delight!

[Lulu54]

I really hope the IVIG works for you - you need a break from everything going on.  I hope you will stop through here more - it seems your post flushed out some other folks who have also not been around much -all with good reasons, I'm just saying....

feel better, L

[opie74]

I am amazed at the cost! Right now, it will be three days / month for 3 months.  We hope that is enough to get past the worst of winter.  We don't have much of a winter here in Mississippi, but still, it is the virus/infection season.  

The supplies are being delivered Wednesday and I should start early next week. With a price tag like that, I sure hope it works.

Ann

[michelleric]

Hi there,
I haven't been here in a very long time, and thought I'd drop In and check it out.  I saw IVIG, and figured I was meant to b here this morning :-)

I have been on IVIG for almost a year.  It is a "2for 1special" according to my neuro.  I to have had repeated, almost constant infections really since I was a kid. Tysabri made me worse (sickness wise) as more infections developed. I saw an immunologist who discovered I have extremely low immune system. (Common variable immunodeficiency) super crazy low .

I have only been sick 1 time this year! And it didn't that the normal weeks of sickness. Been a miracle to me, literally .  It's very very expensive. 36,000.00 per infusion!! I wish I was joking. Come january our detectable starts again, not sure what I will do.  My husband was laid off recently so we will see.

I have also missed the last infusion and have to wait one more month, due to I had a knee replacement 5 weeks ago.  (I am 45 going on 105!!)

Anyway, I highly recommend IVIG. Been the best thing for me.

Michelle

[anon07072023]

You've been dealing with so much over the last year. I hope everything starts to turn around for you and you can enjoy the holidays with your family.

[supermum_ms]

uggg you've had a horrid year.........HUGS!

No wonder your climbing the walls, or at least considering becoming a bubble boy...... err girl. Sorry i have no words of wisdom apart from MS and infections sooooo do not go together well, and whilst spraying everyone with disinfectant every two seconds might seem like a good idea, i doubt it would actually help help.

I do hope you get rid of it in time to enjoy the holidays, fingers and toes crossed that it all works out!

Hugs..........JJ

[mikeysmom1995]

So sorry to hear of all you have been through. What a strong person you are.
I will pray for some relief and recovery for you.

Best regards, barb

[MommyofNatTyZach]

Bless your heart!! I am so sorry for how bad you have been feeling. Praying that these new antibiotics work for you! I also pray you have a blessed Christmas and Thanksgiving.

~B

[candy158]

Hi, I am so sorry that you are having to go through so much.  It is so hard to have a persistent anything, but an infection is just awful .  It can wear you down, pretty fast.

Hoping that the Iv will help you quickly.

Take good care,
((HUGS))
Candy

[summerluvr]

Hi I am sorry u are having a hard time dealing with resistant infections.

I've dealt with infections as a result of Multiple Myeloma, and also long term complication from stem cell transplant (for cancer, I turned out not to have MS, instead MM).  I've had IVIG ordered by my Hematologist, but my transplant infectious disease dr. also said no. He felt that it was better  for me to take long term antivirals and also antibiotics liberally prescribed and hold off on the IVIG because it has its own risks, and they are trying to keep some stuff in reserve since I'm quite young for mm. I am in remission now :)

I've been getting about one infection a month tat I need to take antibiotics for.  though November I have been healthy (just one cold and an pesky HSV infection that keeps coming back I never get a cold sore I get outbreak of sores on the roof of my mouth, or in my sinus/nose so it is really annoying)   Oh wait I had a kidney infection and took a course of antibiotics.  

I hope the meds and the IVIG nip those infections in the BUD! Many MM patients I've spoken to on other online forums say the IVIG really helps them, especially this time of year.  Many say they are able to go on it for 6 months and get over the hump of what they have been dealing with then take a break. I hope you feel better soon and can enjoy your holidays with the family :)