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Re: lost for ideas

Posted: Thu Mar 05, 2020 4:12 pm
by KL123
petalpetal wrote: Sun Mar 01, 2020 7:48 am saw new doctor, was surprisingly attentive and listened. pulled up my records from 2013 and understood my history. will run somestandard blood tests for stomach acid and other things to get ball rolling again and he even suggested sibo test before i had to mention it.

i mentioned i had done one myself before and it came back positive, but doing one through doctors i feel a lot more supported with followup/ treatment. whereas before i was googling treatment after diagnosis and thats where i trailed off, with so many conflicting things online/no access to drug treatment.


feel a bit hopeful- grateful i did not have to defend myself or just send to dentist
Dr.'s Name and location please.

Re: lost for ideas

Posted: Thu Mar 05, 2020 4:58 pm
by petalpetal
My doctors in UK
I was surprised he even listened

Re: lost for ideas

Posted: Tue Mar 10, 2020 2:54 pm
by winter
petalpetal wrote: Thu Mar 05, 2020 4:58 pm My doctors in UK
I was surprised he even listened
I'm surprised too. Good luck. Keep us updated. We need ideas.

Re: lost for ideas

Posted: Sun Mar 15, 2020 12:16 am
by KL123
gotshot26 wrote: Tue Feb 25, 2020 1:19 am Interesting. It seems like it started for quite a few of us around that age (11 or 12 years old). Yes you are on the right track. You have an overgrowth of anaerobic bacteria in your stomach or small intestine - not just your mouth. That is why you are getting all these other symptoms. I just came up positive for the SIBO test and am looking forward to going on antibiotics next week (Rifaximin + Neocymin) - I have found a multitude of success stories from this cocktail of drugs above. I will report back to the forum. I am ready to end this. 16 years has been enough for me and I have spent enough time on this website.
How?
Bacteria becomes resistant and keeps updating it's game when we take antibiotics for long term.
Our system just keeps producing the over growth of this fucked up bacteria. With antibiotics, the bacteria will become resilient. Long term antibiotics will kill our kidneys.
This whole shit is just so fucked up!

Re: lost for ideas

Posted: Sun Jun 14, 2020 6:35 am
by petalpetal
understandbly but appointment to see a gasterontologist has been postponted and looks unlikely until the autumn.

i expected this, and understand this. however i feel less naive and wonder even if there is a postive diagnosis and antibiotics, that if i dont come to some 'underlying' cause it was just reappear- or not even disappear in the first place

feeling a bit flat and dejected by this as have NO IDEA what the underlying cause is, only that is nothing oral. trying and sticking to diets seems futile, without really knowing.

Re: lost for ideas

Posted: Mon Jun 15, 2020 10:43 am
by gotshot26
KL123 wrote: Sun Mar 15, 2020 12:16 am
gotshot26 wrote: Tue Feb 25, 2020 1:19 am Interesting. It seems like it started for quite a few of us around that age (11 or 12 years old). Yes you are on the right track. You have an overgrowth of anaerobic bacteria in your stomach or small intestine - not just your mouth. That is why you are getting all these other symptoms. I just came up positive for the SIBO test and am looking forward to going on antibiotics next week (Rifaximin + Neocymin) - I have found a multitude of success stories from this cocktail of drugs above. I will report back to the forum. I am ready to end this. 16 years has been enough for me and I have spent enough time on this website.
How?
Bacteria becomes resistant and keeps updating it's game when we take antibiotics for long term.
Our system just keeps producing the over growth of this fucked up bacteria. With antibiotics, the bacteria will become resilient. Long term antibiotics will kill our kidneys.
This whole shit is just so fucked up!
I found some success with the antibiotics.

Re: lost for ideas

Posted: Mon Jun 15, 2020 7:25 pm
by mauricio
please....

Re: lost for ideas

Posted: Tue Jun 16, 2020 5:30 am
by Cursed4eva
Get tested for H-Pylori

Re: lost for ideas

Posted: Tue Jun 16, 2020 6:09 am
by petalpetal
i have been tested for h pylori, came back negative.

Re: lost for ideas

Posted: Fri Jun 19, 2020 7:01 pm
by petalpetal
i am feeling veery lost still. anticipating my SIBO test will be postive- whenever i get to take it, as it was positive years ago, but i couldnt follow up with treatment- i think even if the doctor is able to prescribe medication, my BB will not be cured because i dont know underlying cause, and the whole sibo things seems redundant without knowing that cause.

i dont know where to look now.

i have been on this board for years and going in cycles, has become a bog of inconclusive self diagnosis and i dont know. i know i have v bad excissive diarrhea and smells awful, multiple intolerances so feel it is gut related. but cannot get beyond that...i know its my gut- at a loss with so many diets i have tried and conflicting advice

TCM, raw, vegan, keto, all these diets so hard to maintain with hope when i dont know the cause, feels like stabbing in the dark- if i know what it is i have no problem committing to a restrictive diet. but the advice i get given from doctor/ tcm practitioner/online/ nutritionist all say different things.

Re: lost for ideas

Posted: Fri Jun 19, 2020 9:11 pm
by Gelonaxy
One user of this board has success with the fodmap diet.
Do you have nasal bb ?

Re: lost for ideas

Posted: Sat Jun 20, 2020 6:22 am
by petalpetal
i feel my bb is coming more from mouth but definitely connected to diet so much be gastro/internal

fodmap is similar to scd? which i tried for a bit, i felt a small reflief- but then cannot tell if it's psychological/ placebo...

because if not getting to cause of problem, it is just somehow managing things, so then its hard to maintain.

Re: lost for ideas

Posted: Sun Jul 12, 2020 4:01 pm
by Freshhope
I too am getting my sibo test done soon. I don’t really know what to do if positive . I think I’m going to try and get my hands on some bismuth or de-nol drug . From what I read it could help with the bb. Whatever we have is a genetic issue -tmau? . We need something to reduce the bacteria internally to help us have some
Temporary relief now and then . So hard to stay motivated with finding the root cause of the bb issue but I’ve decided to give it a try. I initially thought my bb only came from the mouth but now I get nasal bb it has to be something lower in the digestive system or in our blood, that extrets through our glands / unseen bleeding in gums etc. Get fresh or die trying

Re: lost for ideas

Posted: Sun Jul 12, 2020 4:05 pm
by petalpetal
what is bismuth? it is a metal from google...glad you are positive in finding your root cause.
i feel maybe i am doing more damage than good by guessing and self medicating

Re: lost for ideas

Posted: Sun Jul 12, 2020 4:14 pm
by Freshhope
https://patents.google.com/patent/US20050053556

https://patents.google.com/patent/US6616938B2/en

Apprently it somehow suppresses the bad bacteria / gases in our stomach

It’s amazing how many patents there are surrounding halitosis issues £€¥$$

Good luck petal I shall update here how I went also

Nothing wrong with self medicating just nothing to extreme of course. It just gets to the point where the risk is worth the reward