Does anybody know which online pharmacy can supply Neomycin to the UK?

[bertiedog]

I have both hydrogen sulphur producing bacteria in my small intestines as well as in my colon and also methanogens so I have to treat both of these. So far I have had one course of Rifaximin and Flagyl but don't like the side effects of this.

It did apparently reduce the methanogens but since stopping this in February I am producing lots of hydrogen on many occasions which seems to be feeding the H2S bacteria so at the moment I am taking another course of Rifaximin plus pepto bismuth but since starting this early this week, the methanogens have now gone back up to a highish level and I am suffering with daily constipation again. I have a Food Marble device so I can regularly do breath tests after eaching.

I checked with ChatGPT if this can happen, ie one starts treating the H2S producers which die back but then the M Smithi bacteria rise up again and it was confirmed that this can happen. Hence my request regarding Neomycin as I don't have a doctor to help me with this.

If anybody knows of a doctor in the UK who does really know and understand about SIBO who could help me that would also be great!

Thanks for reading.

Pam

 

[Mary]

@bertiedog - I would check with pharmacies in this thread.

About SIBO - it's often caused by low stomach acid. Stomach acid helps keep "bad" bacteria in check. You can find more info on google -

Also low stomach acid can cause acid reflux - One of my sisters was having acid reflux almost every night and I told her to start taking betaine HCL (2 caps) with each meal and the first day she did this, no acid reflux. And she kept it up for couple of months, no acid reflux. She finally stopped the betaine HCL and is still doing well but she knows what to do if it flares up again. She doesn't have ME/CFS.

Ironically enough (though not surprising!) many doctors' weapon of choice for acid reflux is a proton pump inhibitor, which of course reduces stomach acid. . . and can cause malnutrition, malabsorption, etc.

Lastly, fwiw, people with ME/CFS seem to be prone to low stomach acid, from what I have seen. We have so many weird abnormalities! But they're very real - I have to take betaine HCL every day and have had to do so for years - it never gets fixed, unlike with my sister.

 

[bertiedog]

|Hi Mary

I am like you in that I have been taking betaine hcl for years because of low stomach acid but I am sure that I haven't always taken high enough doses and last year I stopped taking it for several months which made the SIBO a lot worse. I was experiencing a burning bladder and the hcl seemed to be making it worse but no I know that this pathogenic bacteria can cause this.

Things are more complicated with my digestive system in that I have got malabsorption probably cos my recent scan has shown that I have a 10 mm cyst in my pancreas which explains why my stool elastase has dropped from over 500 in 2020 to 261 in May this year and could partly explain the maldigestion. There is also a possibility my liver is affected because I have many tiny cysts in there too but the report said that everything looked benign. However I am waiting to have a follow up MRI as they want to find out for sure what type of cyst it is in the pancreas.

Since knowing about the issue around me not absorbing fats and the low elastase I have been taking 4 Now Pancreatin enzymes with each meal and at least 1 with each snack which has helped my gut to be a lot calmer. I also take 950 betaine with lunch and dinner and 600 with breakfast. I am hoping that once I get the results from the MRI the NHS might prescribe the enzymes for me. I have stopped the fairly rapid weight loss since doing all this but because of the H2S bacteria causing loose bowels it is very hard to hang on to any weight I might gain hence me starting the Rifaximin this week which has already stopped the loose bowels but almost switches me into the opposite direction! I am also taking Pepto Bismuth but at a very low dose because I am waiting for a new box of tablets to arrive.

Here in the UK its a nightmare getting help with this type of problem because the NHS hardly knows anything about SIBO let alone theH2S producing type of bacteria that consistently show up in my Biomesight stool test!

On a positive note I have already felt an increase in energy since being on the antibiotic etc. I can carry on for longer doing various jobs around the home without feeling like I have been run over by a bus and my sleep has improved too which I really needed as I was only getting 5 hours on many nights.

I searched on the list we have her on PR regarding online pharmacies but so far I haven't found one that supplies neomycin in tablet form so if necessary I might have to take a different antibiotic if it is necessary for me to treat the methanogens that have come back to life since starting the Rifaximin. There is obviously something going on because my Food Marble device breath test results are completely different to what I was getting prior to starting Rifaximin and the Pepto Bismuth plus the rather too firm stool bordering on constipation. The archea M Smithi have shown up in a Genova G I Effects stool test I did in 2020 btw but I wasn't knowledgeable than about what it all meant and it was just before Covid started so I had nobody to ask about it either.

Finally I cannot believe the hours I have spent watching You Tube videos of how the digestive system is supposed to work which is unbelievably complicated with so many components necessary to get the right results that I thought it was something of a miracle that anybody has good digestion! Bile seems to be extremely important part of the process and I am not convinced that mine is as it should be but that will have to be for a later date whilst I try and do something about these pathogenic bacteria that are so toxic to my body. A low Fodmap diet has helped but I have been able to add more Fodmaps without ill effects but I cannot tolerate high sulphur foods like eggs which I used to love. The result is very offensive all round!

Best Wishes

Pam