Infections

[annekat]

Here, I think most people who take CTX do so orally. Some get IV but seems less common. If I were going to bother getting something in IV form I think I'd rather it be RTX, since that is the only way to get it and it is now preferred over CTX. But the CTX in oral form worked well for me, cleared up the worst of my Wegs issues, and I was able to get used to the side effects so they didn't bother me. It was easy, affordable, and dosages could be regulated any time.

[Savva]

But the CTX in oral form worked well for me, cleared up the worst of my Wegs issues, and I was able to get used to the side effects so they didn't bother me.

Every time when I am in hospital in Moscow for a regular check with my doc, I meet new people with WG. Some of them who were so unfortunate to live far from any quality medical care were diagnosed too late and even if they were diagnosed, the treatment was not appropriate, as in my case as well. We have WG specialists here in Russia only in Moscow and I can name only few of them (perhaps 4, I don't know exactly), and one is my doctor. So for these poor people at their edge of dying the only reasonable way of treatment is oral CTX. Oral CTX has many advantages and is a very good method for prominent and strong symptoms. However it has disadvantages - side effects are more severe, your stomach gets damaged (at least that's what people doing oral CTX always tell me) etc... But Oral CTX also is good for those who have no or very slow progress on IV therapy for some reason. Anyway dosage is what's important. You can easily recover from small doses of oral ctx for 3 days of oral treatment. But a week is a different thing.

[Rose]

Hi Alysia

Just saw your posts about your UTI. A few weeks ago I posted my story about having an antibiotic resistant superbug bladder infection which was causing me lots of distress because of frequency and urgency. As I was not in great pain or had a temperature, my nephrologist sent me on my way with no treatment telling my that only one antibiotic is susceptible to my infection and that he was hesitant to use it as it was the last resort and that he would only use it if my symptoms got much worse ....... and added that there was no guarantee that the antibiotic would work as there have been reports that some infections have become resistant to even that.

So it was very scary times for me. Here I was immune suppressed and waiting to see if this infection would go to my already compromised kidneys or that I would develop sepsis.

I was housebound because of the infection and spent many hours on the internet looking for help....and I think I have found it. It was the one product I had never tried because it was not available in SA a few years ago but now it is. I started taking it about 3 weeks ago and because of chronic infection, I was warned that it could take a while for it to be effective. Today, my urine has been clear for 3 days with no sign of infection. It is completely natural with no side effects. Has this worked for me and my Superbug infection? I think it has though it is still early days but I cant believe the infection has gone (I test with my own dipsticks) Maybe this is the answer for me......I hope so as UTI's have plagued me for over 8 years and I can say goodbye to antibiotics and all their side effects. Unfortunately it only works against E Coli and Klebsiella pneumonae but they are responsible for 95% of UTI's. If you (or anyone else) are interested in the product let me know and I will give you the name and you can do your own research...there is a lot on you tube about it also. Antibiotic resistant infections are challenging the medical community and they are being seen quite frequently now in the general population. Being immune suppressed makes us more of a candidate for these infections.

[Debbie C]

Rose, I remember reading your thread awhile back ago. Glad you found something that cleared it up for you and that you are doing better. I would be interested in knowing what it is.

[Rose]

Hi
Maybe I spoke too soon as it is still early days but the fact that it has taken it away for 3 days gives me hope. I guess I will know only for sure when I start reducing the dose and see what happens. I am told with chronic infections there is a possibility of it returning when reducing but just to increase the dose again and eventually it will go. It could take a while but I have hope as it is obviously doing something.

OK the product is called D Mannose. But there is D mannose and D Mannose. Some have fillers in them but you want a product that is completely pure. There are a few on the market. Clear tract is supposedly good but the one I am using is called Waterfall D Mannose by Sweet Cures. If you go to their website, it tells you all about it and how it works. Also google forums for UTI and Waterfall D Mannose and you will see how many people have found relief. The down side is that it can get quite expensive especially when you have been a chronic sufferer and need a while for it to clear. I have no choice so I will continue. It has no drug interactions, completely natural being a simple sugar and everyone can take it even Diabetics though they are advised to keep a closer eye on their blood sugar levels. They say it wont work for all infections of the UTI but for almost all. I am keeping my fingers...and toes crossed!!!

[Alysia]

thanks for the info, Rose. and good luck with it ! please update us how it works.
I don't know if I will try it. need to read first what it is.

[Alysia]

I have used Cefuroxime before.

this med can beat elephants... it sure beats me

[pberggren1]

I'm so sorry sweetie.......

[Alysia]

not a dull moment, now I have a new infection: throat
and of course a new antibiotic to taste: Amoxicillin. looks yummy

I am going to set appt. with my wg-doc. maybe I am on too much immuno-suppresants. I will be glad if I can say goodbye to mtx.
anyone know if rtx & pred are enough ?

[annekat]

I'm sorry you have a new illness, Alysia, and hope it can be resolved soon with the antibiotics. I think there are people on here just taking RTX and pred, but I am not sure, so we will wait to hear from them. Big Hug!