Sick & Tired

[Alysia]

An update: day 3 on the levofloxacin, so happy for no fever today, thanks be to God also no diarrhea. I think it helps my stomach. The only side effect for me is insomnia but I will take it as it is. Still coughing.

The results of the second check of my biopsies from the colon came back. Thanks God they rulled out the Whipple disease. It was so scary because it can affect the brain. So I am happy that I dont have it.

I have a new diagnosis of second disease: collagenous colitis. It might be caused by the immune system attacking itself. It can be treated by steroid called budesonide. Did anyone ever try it ? With or without pred ? I will have to check the combination of the 2 together. It means that all the crazy diarrhea that I am having for months now, is not WG related. So I think that those are good news after all.

Thank you all for being here. I love you and I keep you in my prayers. God bless you all.

[MikeG-2012]

Silly question, but you do not drink sugared or diet soft drinks do you?

I had constant IBS issues, and once I cut out the soft drinks, gone!

[Alysia]

Silly question, but you do not drink sugared or diet soft drinks do you?

I had constant IBS issues, and once I cut out the soft drinks, gone!

Thanks for trying. No. I dont drink any of them. Actually all I can drink is black tea, no sugar, and water. All I can eat safely is chicken, eggs, toastes, white pasta. I now try to eat apples again to gain some vitamin c. Because it came back almost zero in my blood tests.

[annekat]

Glad the levofloxacin is working out, no diarrhea, no Whipple's disease. Sorry about the strange new dx but glad it means WG is not the problem. I think Jacquie, Booknut, takes budesonide with pred, not sure, you could ask her. I have taken other steroids with pred, too, as in inhalers. I'm glad you are getting some answers and there's more hope for feeling better in the future. 😊

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[Pete]

I took budesonide as an inhaled steroid early in my wegs journey when I was still having breathing issues. I googled it and in its oral form, it's used for Chrohn's and ulcerative colitis.

I was also on 60 mg pred while using budesonide as needed. I had no problems.

Hoping you respond well to this treatment!

[Alysia]

Thanks a lot for the info, Anne and Pete. It is calming to know that I can take both together, even up to 60mg pred.

[Alysia]

Does any one have bleedings under the nails ? It looks like I can see tiny blood vessels under the nails and it is aching.

[mishb]

Does any one have bleedings under the nails ? It looks like I can see tiny blood vessels under the nails and it is aching.

Is it a splinter hemorrhage. I have had these a few times.

Bob put a thread up about it, a few years ago

http://www.wegeners-granulomatosis.c...morrhages.html

[Alysia]

Wow. Thanks for the info Michelle. Interesting.

[marta]

Hey beautiful Alysia,

I haven't read all the replies to the end, so forgive me if I am repeating something someone else has said, but mine is so 'out there' that I doubt anyone else is as cooky as me.

Have you considered parasitic infection? I know it sounds gross, but with a depleted immune system and living in a warm environment it's a high possibility.

Last year, before my flare, there was a guy coming to our town with some pretty amazing theories, and even more amazing success. Quite a few people in my small town of 4,500 were helped by him, and the most help came to those with gastro issues. My mom being one of them, and a neighbour who was diagnosed Celiac being another. It turned out that my neighbour had an 11 foot tapeworm and once she took antiparasitics, and passed it, she is no longer Celiac. My mom had diverticular disease and couldn't eat, she was a shadow of her former self, and after treatment with him, she eats everything. It's worth a check, but some docs are not very thorough, as was the case with my neighbour, who went to to medical docs in town to confirm the diagnosis he gave her of a tapeworm, and they did the stool test and told her she has no parasites, just Celiac disease and to forget about this quack. She luckily didn't listen to them and did the three day treatment, and is now healthier than she has ever been.

Mom's diverticular issues were quite alleviated right from the get go with Beta Carotene. I think that would help you too as any gut issues tend to break up the mucous membrane in your guts, and beta carotene helps rebuild mucous membranes (hence the it's good for the eyes bit) What he told mom to do is take high doses (she was taking three in the morning and three at night) of beta carotene until you start to see your skin turn orange. When you see a change in skin colour, it is no longer acting therapeutically and your body is storing it, and then you can stop taking it. It sure helped my momma's tummy.

I'll also send you the link for Leonard's site. He overstates his ability sometime, which is how he tends to turn people off, and I've told him as much, but he has also helped a lot of people (not all, like he likes to think) but a lot. So it's worth a look if nothing else. Blog ? The Blog of Leonard Carter (I'm linking the blog because it has some interesting topics.) Maybe you can make another trip to Canada and see Leonard and get your issues fixed up.

Hope that helps.
Much love.

Marta