Probiotic may have made me worse

[[Wi...]]

 

I was wondering if a probiotic could have made me so much worse. I am sensitive to meds and supplements. 

My main issue is some form of akathisia. I had a horrible time between July and October and finally had a steady baseline with a lot of windows in November and December. It was a lot better and finally looking up. However, I had a mild UTI on 18-20 Dec. I decided to wait it out and only took two sachets of a special urinary health probiotic plus drank cranberry juice. I took the probiotic regularly in the first half of last year with no issues but this time it seems to have affected me badly. I took nothing else unless something I ate affected me but that had never happened before. I don’t think what I am experiencing is a spontaneous exacerbation because I have new symptoms and they are worse than anything ever. The wave began a few days after the UTI and started as a regular wave that would normally get a lot better after max 7 days but instead of getting better I have been getting worse and worse and it hasn’t stopped yet. What I had intermittently is now almost constant, many symptoms are 10x worse, which makes them unbearable. I have new ones and it feels like there is an electrical storm in my brain with zapping, sizzling, pressure, pulling, squeezing, nerve pain. I had bad pressure and some electricity from my head and back of neck only on my worst days, now it’s all the time, just different intensities. Also the acid in veins pain got way worse, when it hits I cannot move an inch. I can still sleep for now but last night was one of the worst ones because I had RLS all over, which used to affect my legs only. Plus my aka normally pushes me towards total immobilization and lying down and now I am lying down all the time because being up triggers the neck and head symptoms really bad. I went from functional to completely non-functional and my mum and husband have to take care of our baby because I am not able to. Note that during the two months when my baseline was better I had only 2-3 days when I asked for help with my baby as it wasn’t even for the whole day. I walked, worked and was able to do a lot. I am now barely able to make myself breakfast and eating it is a feat because the head pressure is very bad when I am up. Evenings are a tiny bit better but not much. 

 

[[Ta...]]

Hi, I was wondering if you can remember what you ate just before all these symptoms popped up. I am extremely sensitive to pretty much everything, and probiotics have really revved me up in the past. But, I'm much more sensitive to food. It might help to try to identify and maybe temporarily refrain from certain edibles. It helps me quite a bit.

[[Wi...]]

2 hours ago, [[T...] said:

Hi, I was wondering if you can remember what you ate just before all these symptoms popped up. I am extremely sensitive to pretty much everything, and probiotics have really revved me up in the past. But, I'm much more sensitive to food. It might help to try to identify and maybe temporarily refrain from certain edibles. It helps me quite a bit.

I was never sensitive to foods so I don’t know. Sugar never bothered me. I avoided caffeine and MSG. But Xmas food is full of spices that I normally don’t eat on a daily basis so maybe some spice? No idea

[[ns...]]

On 28/01/2024 at 22:42, [[W...] said:

I was wondering if a probiotic could have made me so much worse. I am sensitive to meds and supplements. 

My main issue is some form of akathisia. I had a horrible time between July and October and finally had a steady baseline with a lot of windows in November and December. It was a lot better and finally looking up. However, I had a mild UTI on 18-20 Dec. I decided to wait it out and only took two sachets of a special urinary health probiotic plus drank cranberry juice. I took the probiotic regularly in the first half of last year with no issues but this time it seems to have affected me badly. I took nothing else unless something I ate affected me but that had never happened before. I don’t think what I am experiencing is a spontaneous exacerbation because I have new symptoms and they are worse than anything ever. The wave began a few days after the UTI and started as a regular wave that would normally get a lot better after max 7 days but instead of getting better I have been getting worse and worse and it hasn’t stopped yet. What I had intermittently is now almost constant, many symptoms are 10x worse, which makes them unbearable. I have new ones and it feels like there is an electrical storm in my brain with zapping, sizzling, pressure, pulling, squeezing, nerve pain. I had bad pressure and some electricity from my head and back of neck only on my worst days, now it’s all the time, just different intensities. Also the acid in veins pain got way worse, when it hits I cannot move an inch. I can still sleep for now but last night was one of the worst ones because I had RLS all over, which used to affect my legs only. Plus my aka normally pushes me towards total immobilization and lying down and now I am lying down all the time because being up triggers the neck and head symptoms really bad. I went from functional to completely non-functional and my mum and husband have to take care of our baby because I am not able to. Note that during the two months when my baseline was better I had only 2-3 days when I asked for help with my baby as it wasn’t even for the whole day. I walked, worked and was able to do a lot. I am now barely able to make myself breakfast and eating it is a feat because the head pressure is very bad when I am up. Evenings are a tiny bit better but not much. 

Willhealsoon, it's the cranberry juice. Om sure it is, thus happened to me. I drank some for uti like I always have and it was a mistake.  I knew it in a couple hours. The next day I went to er I was so symptomatic. Unfortunately they gave me an antibiotic which I can't take any of and that led me down a road of constant symptoms

 I'm fact, it seems like I've never stabilized since then. I think the sugar in the fruit is what happened.  I took the capsules of cranberry for a day and then drank some. At least for me it was that.

I have optibac c probiotic and I'm considering starting it but I just don't know.  

I hope u feel.better and you recover quickly ok

Ns

 

[[Bu...]]

@[Wi...],

I was wondering if perhaps the UTI itself could be the cause of your worsening symptoms.  I know that every time I get sick I get thrown into a wave, whether I took any meds, supplements, etc. or not, and that it can take a very long time for everything to settle back down even after I am over the illness.  Idk, just a thought.

I hope everything settles back down soon and I'm glad you have family to help you.

 

[[Wi...]]

2 hours ago, [[B...] said:

@[Wi...],

I was wondering if perhaps the UTI itself could be the cause of your worsening symptoms.  I know that every time I get sick I get thrown into a wave, whether I took any meds, supplements, etc. or not, and that it can take a very long time for everything to settle back down even after I am over the illness.  Idk, just a thought.

I hope everything settles back down soon and I'm glad you have family to help you.

Hmm, I never had that happen before and I had a few UTIs and was also sick a couple of times, after my last cold my window actually began. 
 

5 hours ago, [[n...] said:

Willhealsoon, it's the cranberry juice. Om sure it is, thus happened to me. I drank some for uti like I always have and it was a mistake.  I knew it in a couple hours. The next day I went to er I was so symptomatic. Unfortunately they gave me an antibiotic which I can't take any of and that led me down a road of constant symptoms

 I'm fact, it seems like I've never stabilized since then. I think the sugar in the fruit is what happened.  I took the capsules of cranberry for a day and then drank some. At least for me it was that.

I have optibac c probiotic and I'm considering starting it but I just don't know.  

I hope u feel.better and you recover quickly ok

Ns

Oh wow, really? I had trouble with d-mannose in the past so I thought that when I drink it in a natural form it would be okay (cranberry is a scourge of that). I drank a lot. It was sugarfree, though. And sugar never really bothered me but there might be something in cranberry that does that. I don’t know. I did drink cranberry before but well, it must have been something because why so much worse all of a sudden. I know the brain does what it does but hard to believe in spontaneous exacerbations. Sorry it happened to you too. 

[[dj...]]

At this point nothing surprises me, but a probiotic doesn’t seem like a likely suspect to me.  At least not to create a monstrous 6 week wave.  
 

I’ve said it many times.  This benzo injury has a mind of its own.  What is possible is that it was about to trend negative and the UTI hit and you took a probiotic and all these factors together were simply too much.  
 

Sometimes I can eat a good amount of sugar and be totally fine, sometimes I can eat a lot of sugar and it messes me up.  Sometimes I can be more physically active and be fine.  Sometimes just walking to the mailbox sets me off.  The course of this is so unpredictable with symptoms constantly in flux.  
 

I do hope you (and me) find some relief soon. 

[[Wi...]]

22 minutes ago, [[d...] said:

At this point nothing surprises me, but a probiotic doesn’t seem like a likely suspect to me.  At least not to create a monstrous 6 week wave.  
 

I’ve said it many times.  This benzo injury has a mind of its own.  What is possible is that it was about to trend negative and the UTI hit and you took a probiotic and all these factors together were simply too much.  
 

Sometimes I can eat a good amount of sugar and be totally fine, sometimes I can eat a lot of sugar and it messes me up.  Sometimes I can be more physically active and be fine.  Sometimes just walking to the mailbox sets me off.  The course of this is so unpredictable with symptoms constantly in flux.  
 

I do hope you (and me) find some relief soon. 

I don’t know… I am so sick. If I keep deteriorating for no reason then I won’t make it. Because I am already bedridden not knowing how to stand this. 😬