Infections

[Alysia]

thanks so much Dina and Anne, you are very sweet and heart warming
I can't take probiotics or many others foods because my colon can't bear them
it is so complcated to find the "balancing" between the wg-meds, the other meds, how to control wg-symptoms but on the other hand not to be too much immuno-supressive, so I can fight the infection.

we weggies need to be a kind of "jugglers"...

[annekat]

Sorry, Alysia, you probably said before that you can't take probiotics because of your colon. And you can't eat vegetables! Wow, that is really a limiting thing. I'm so sorry you have that issue and wish there was a way to fix it....

[Debbie C]

Alysia, be careful about taking too many antibiotics,you can easliy end up with C-diff which will make you VERY sick. Anne is right about the cranberry juice or any other juices you can tolerate. Hope you feel better soon.

[Barbara N]

Hi Barbara,
I can tell you the few things I think I know. Especially the parts that might apply to your situation.
I recently received Rituxan in September. At the time I was suffering from sinus infection and emailed my doc with my concern about taking Rituxan while having a known infection.
He said that he thought that at this point the WG was more danger to me than the infection. As it turns out the infection cleared up nicely with antibiotics and the Rituxan infusion went well.

Back in the early days of Rituxan the standard protocol for initial treatment (verses follow up treatment) was one infusion per week for four weeks. A total of 4 infusions. It seems now that the standard may be shifting to two infusions space two weeks apart- I'm not sure on this.

What I do know is that the emerging protocol seems to be getting an infusion every six months until the disease is brought under control. I've lost count of how many I have done every six months but it is something like 8.

I began with the 4 infusion protocol. My last 'tuneup' infusion was a single infusion at six months. So far I seem to be doing ok. I hope to make it to the six month mark and only need one other or none at all.

To me the first set of infusions were very scary because I read the possible side effects on the internet. Fortunatly the infusion nurses were great in talking to me about their experience giving Rituxan and the fact that most people tolerate it quite well. In the event that you don't they should be omwell trained to deal with any problems you have. The procedure to me now is boring I have become so accostomed to it.

I believe I read recently that Rituxan has been shown to be superior for treating relapse in comparison to Cytoxan. This seems to me good grounds for getting it approved if that is a question at all.

It is very expensive here. My insurance company gets billed just over ten thousand US dollars for EACH infusion. Yes, a series of four is about 40 thousand dollars. Thankfully, I have insurance that pays most of this. I suspect this is not an issue for you but the issue may show up in some form as nobody likes to pay for expensive treatment like that.

AND, I have found that even here it behooves (a little pun for you) me to try and know a little more than the doctors also. Sometimes I don't and am pleasantly surprised.
I wish you luck in getting better treatment. It sounds like you are gettiing things figured out even if they maybe aren't.

Are you taking what we call 'Bactrim' for your bladder infection? I know my doctors here favor Bactrim for my infections because of its unique property of reducing the chance of relapse. Plus it is just a great antibiotic.

Hey me2 that was great information and I believe it is the solution. It turns out that my veins are to smashed for dialysis ,I have had so many operations that my veins can't take much more without exploding. That is why they have been telling me to get my things in order and think positivley and they will keep me pain free and comfortable. I really want them to put me on Bactrim because I have had this infection for about a year and it won't go away. Riding still makes me feel great and I ride as often as I can

[Rose]

Alysia, be careful about taking too many antibiotics,you can easliy end up with C-diff which will make you VERY sick. Anne is right about the cranberry juice or any other juices you can tolerate. Hope you feel better soon.

Thiis is what i was worried about though I never had any choices in antibiotic as my infection was resistant to all but one. For an update....it has been over 3 months now since told I had a superbug UTI. The D mannose continues to keep the infection at bay and I now use much less each day so the cost has come now. I am almost symptom free though i am aware the infection is still there. Hope you can get your infection under control. UTI's are the pits!!! Just been diagnosed with cataracts today...as Drz says. it is a disease that keeps on giving!!

[Debbie C]

Alysia,I was also going to mention last night before I signed off,besides drinking juices you should try different tea like green tea with alot of antioxidents in it ,maybe that will help.

[Alysia]

thanks Debra I do drink a lot, all kind of teas (can't bear juices). my awesome dad just bought to me yesterday capsules of cranberries to swallow, so I hope it might work this way. antibiotics already working so I am feeling better.
thanks Rose for your update. it seems that I should search to find and try your D-mannos...
I hope your cataract can be handled easily. I guess it is a "gift" from the pred

[Alysia]

first time for months that my urine culture came back clear thanks God.

[Barbara N]

Sorry, Alysia, you probably said before that you can't take probiotics because of your colon. And you can't eat vegetables! Wow, that is really a limiting thing. I'm so sorry you have that issue and wish there was a way to fix it....

I live on vegetables, I don't know what I would do without them but now they are starting to cut out certain veggies and fruit because of the potasaium etc. Next week is a full week , sometimes two appts. in on day then they are checking me in for three days to clear the potassium from my blood and another few days to clear the toxins from my urine. It has been decided that <I can't have dialysis because my veins aren't strong enough to support the shunts then I have a week of Ketamine. Sounds like a fun filled week ahead. I still have my bladder infection, they seem to have given me everything and nothing works. Big hugs and you take care of your self. I am praying for you. Barbara

[annekat]

I'm so glad your infection appears to be gone, Alysia! And good to hear from you, Barbara, but I'm sorry to hear your infection continues along with other issues. Thoughts and prayers go out your way.