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I have posted on this a few times and never really know what to thinkmabout my body being out of the ordinary..maybe inam just a weirdo but I swear in try the megadophilus 3 times a day for about three weeks and I get a ton of pain in my pelvis, and urgency and bloating right at that three week mark. I even feel a little inflamed everywhere likes joints...matia started me on RP to help with the bladder symptoms. I have tried RP in the past and had a hard time with it but I found a new bottle and am starting it tomorrow. Has anyone else had these same symptoms with the megadophilus starting around the three week mark or is it just me??? And has anyone needed RP to help? Any feedback would be so greatly appreciated. Sometimes I feel like an outsider like I am the one who does not take. Also one more question....has anyone ever been blood tested and had elevated liver enzymes? Matia said it is not common and I should do further testing..which I agree...I am just wondering if anyone else has had these results...
iPad typo...I meant to say, i
iPad typo...I meant to say, i have been trying the mega three times a day for three weeks and then it hits me...the pain and urgency and bloating :)
Hi Portia,
Hi Portia,
I haven't started treatment with Dr. B yet, but I did start taking Megadphilus since I knew it was a part of her protocol. I can't say that I have had the same reaction as you... but I have had similar reactions to other probiotics (increased pelvic pain, bloating, cramps etc) so it doesn't seem all that strange to me that you would be having a reaction to this one.
We may all have the same disease, but IC is very irregular in it's patterns and while we all have some symptoms in common the reason for our symptoms and the way our bodies are compensating for illness are all very individualized. I think this is extremely important to remember while going through treatment. So I don't think you are so "weird" for having a different reaction, and now it is Dr. B's job to adapt to your particular body if she can, or decide whether or not this is an appropriate reaction, which I am sure she will do.
As for the liver, I have not been tested, but I would be really curious to know what is causing the abnormality you are experiencing since I have multiple diagnoses a part from IC right now that I think may eventually (if they haven't already) affect my liver in some way.
Good luck, and don't worry too much!
May you be happy and well :)
Hannah W.
Hannah,
Hannah,
Thanks you for responding. It helps to hear from others about their symptoms to just ressure myself I am like others and I will get better and am not the only case that won't. Sometimes I wonder! Haha. I glad have already started the probiotics and are doing well... I am excited for you to meet with dr b:)
*reassure
*reassure
Hi Portia
Hi Portia
I had those symptoms within 3 days on the Mega. (I have heard that this delayed reaction happens to people on the bifido. )Then she had to adjust the dose. I have been on RP with the mega since the beginning of my treatment. Can she adjust your dose? I am assuming you keep in close contact with her? (Although, I think I read your post recently that you had not been in much contact with her in the last year?) I hope you can keep in close touch with her as this has helped keep me more comfortable and seemingly making good progress in treatment. Also, I have read on other health boards that MANY, MANY people that have IBD, IBS, and other gut issues tolerate Bifido really well, and NOT mega! If there is inflammation in one of the areas of your gut, the other areas can be affected, so maybe there is some kind of back and forth (small intestine, large intestine) that needs to happen to slowly bring down the inflammation in both areas. Not very technical, I know, and I fear you are a nurse and are laughing at my post :)
But you might do some searching on mega, bifido and Natren in the IBD world and you will find some interesting discussions about probiotics. Hopefully Dr. B can help you work this in but if she can't yet, you may tolerate it later, and/or you may heal WITHOUT it!!
xo
If we don't excel at health, the only other option is disease.
Portia,
Portia,
I have JUST started on the mega and RP so I'm not sure what help I can be, but I do notice more pain and frequency that may be die off with all of this...I also notice that if I take the mega plus RP BEFORE meals as opposed to during or after, these negative symptoms get exacerbated.
Sometimes all it takes is a protocol change...I just switched from 1/4 to 1/2 mega and taking it with my meals and it seems to make a boatload of difference.
Also, I feel that the RP helps me and my joints....to be honest, it's funny but I feel that my bladder has never felt better and also hasn't been in such frequent pain recently....I"m not sure what that means but I think it's die off and that I may be getting stronger from it...
I have only been on this for 5 days now though, so I"m afraid I"m not an expert on it yet.
Let us know how it goes with the RP!
Its always taken me about 3
Its always taken me about 3 weeks before I react to anything. This has made it very difficult for me to pin point what is bothering me, but just wanted to let you know you are not alone. Its also very common for RP to be increased when we are struggling with the probiotics.