Dysbiosis Treatment with ABX, KDM

[JES]

If you actually had any experience with Azithromycin you would notice there is warning about the heart thing on/in the box! It is known and possible risk and if you google it gives you like millions of results. That's why even lyme clinics using long term azithromycin do ECG before and sometimes during treatment when it's long term. This is something patient and doctor should be at least aware of, so please don't confuse patients by denying the existence of the risk.

Fair enough. When I took it three or four years ago there was no such warning on the box in my country. Also a recent study found that there was no increase in cardiovascular death, so the information appears to be conflicting. My only point was that prescription of Azithromycin is very common for all kinds of infections, I know about at least a couple of people who got it recently prescribed for a trivial infection as first-line antibiotic.

 

[msf]

Yes, you will find that Vojta does not always quantify the risks he or she is talking about, but then perhaps he or she is too ill to. Which is another reason why people need to be aware that a lot of the onus for finding out about these things unfortunately falls on them personally.

 

[snowathlete]

I totally understand. As I said, I was not trying to attribute blame, I was just trying to point out that, whichever ME doctor you see, there is no real safety net, because even if you have a GP who thinks you have a real illness, their stock response to any treatment whatsoever will just be that you shouldn´t undergo it. The only KDM treatment that the NHS ID doc agreed with was coincidentally the only one that I had a bad reaction to, namely probiotics. Once I had established that these were making me worse, I discontinued taking them. I am not saying I would always make the right decision under such circumstances, I´m just trying to point out that people need to be aware that there is no safety net with ME doctors, for reasons that are entirely the fault of health organizations such as the NHS.

I think I have probably asked you this before, but have you tried the strict elimination phase version of the FODMAP diet?

It's ok msf I didn't take your post as blaming me. I don't disagree with you that patients should do their best to inform themselves as much as possible, but the problem is just that it is often not enough. Patients usually don't have the specific education, the experience or the objectivity to protect themselves from bad treatments. Doctors do, and should, the responsibility is theirs when they treat a patient. While it would help if the NHS was different, the NHS were not responsible for my prescribing doctor not stopping the treatment when he should have. I don't think it is a bad thing that doctors make treatments available like this, I just think they ought to inform patients better of the risks, and proceed with much more caution, and halt treatment if there are obvious signs the treatment is causing harm, or may be causing harm. I've got UC probably for life now, and perhaps that would have been avoided or at least lessened had KDM stopped the treatment at the appropriate point.

I don't believe the FODMAP diet would be sensible for me so I've not been on it.

 

[msf]

It's ok msf I didn't take your post as blaming me. I don't disagree with you that patients should do their best to inform themselves as much as possible, but the problem is just that it is often not enough. Patients usually don't have the specific education, the experience or the objectivity to protect themselves from bad treatments. Doctors do, and should, the responsibility is theirs when they treat a patient. While it would help if the NHS was different, the NHS were not responsible for my prescribing doctor not stopping the treatment when he should have. I don't think it is a bad thing that doctors make treatments available like this, I just think they ought to inform patients better of the risks, and proceed with much more caution, and halt treatment if there are obvious signs the treatment is causing harm, or may be causing harm. I've got UC probably for life now, and perhaps that would have been avoided or at least lessened had KDM stopped the treatment at the appropriate point.

I don't believe the FODMAP diet would be sensible for me so I've not been on it.

I would hope that, if you had a decent GP in a decent healthcare system, he would have sent you to a gastro when the symptoms first started to occur. That at least is my understanding of one of the roles of a primary care physician. That is what I meant by a safety net.

For Vojta´s sake: I am not saying that this is the GP´s job, and that any ME physician would not be culpable in such a situation. I am saying what I have been saying all along: that there is unfortunately no safety net for people seeing ME doctors, regardless of whether they are competent or not.

 

[msf]

Anyway, going back to the subject of the thread: my personal N=1 experience is that KDM´s treatments (including gut dysbiosis treatment) have helped me a lot. I believe that others may have had a different experience. I do not know of any study of the success rate of any ME doctor. Therefore it is really a case of whether it makes sense to you. I tried to explain what I think is KDM´s reasoning with regards to ABX for treating the gut in a recent thread, but that just turned into the usual KDM is good/bad argument. If anyone would like my opinion on his reasoning re: gut treatment, please PM me.

 

[snowathlete]

I was only on abx for one month, so I don't really have this experience.

Hi Jaime, not totally clear what you're saying, but to clarify my point, available probiotics are mainly lactic acid bacteria that we use in food production. Combined, available supplement probiotics make up a lot less than 10% of any person's healthy gut, and that's all we can replace. There doesn't seem to be any evidence that taking LABs stop the other types of bacteria being killed by abx, and I'm not sure why they realistically would.

All the other types of bacteria, the majority of what everyone has in their gut and which are almost certainly important just aren't available as supplements. So while we can theoretically replace these LABs (though I am not sure in practice this works either) we can't replace any of the other gut bacteria that abxs kill off. The longer you are on abx the more your gut flora seems to suffer.

Some studies suggest that in time gut flora recover, but in my personal experience it only recovers a bit; a lot of the normal occupants of a healthy gut, that tests showed were present in my gut prior to abx, have not returned or are only present in insignificant numbers.

I think the gut can probably recover from short term abx but the longer you are on it the more damage and there is a point where you can't recoever and it can cause other problems.

 

[JaimeS]

I don't have the gut desolation people mentioned because I was on antibotics for only one month.

As for probiotics, they've been absolutely essential for me. Although what I take is probably not the 'standard' one. I get reliably sick if I miss a few doses in a row.

So logically, it's easy to understand what you're saying; it's not a lot of bacteria in those probiotics. Experientially, they make me feel better, and I feel much worse when I accidentally run out of them.

 

[snowathlete]

I would hope that, if you had a decent GP in a decent healthcare system, he would have sent you to a gastro when the symptoms first started to occur. That at least is my understanding of one of the roles of a primary care physician. That is what I meant by a safety net.

For Vojta´s sake: I am not saying that this is the GP´s job, and that any ME physician would not be culpable in such a situation. I am saying what I have been saying all along: that there is unfortunately no safety net for people seeing ME doctors, regardless of whether they are competent or not.

Yes, in theory, but the NHS is not great and GPs make mistakes too. I did see my GP at 5 months but he guessed it was hemorrhoids, which was a pretty stupid guess I think given everything I told him. My GP was not supportive of me having abx treatment but was aware. I then went back, saw another GP and got referred, but I had to wait for a colonoscopy. In the end it got worse and the wait was still crazy so I went private and got it done fairly quickly at that point.

 

[snowathlete]

I don't have the gut desolation people mentioned because I was on antibotics for only one month.

As for probiotics, they've been absolutely essential for me. Although what I take is probably not the 'standard' one. I get reliably sick if I miss a few doses in a row.

So logically, it's easy to understand what you're saying; it's not a lot of bacteria in those probiotics. Experientially, they make me feel better, and I feel much worse when I accidentally run out of them.

Ok, I'm with you. It might be that the probiotics are beneficial for you, and for lots of people. But that doesn't mean they will protect a person from abx, that's all I'm saying; they basically won't, in my opinion.

 

[JaimeS]

Well; if it leads to intestinal scarring, probably not. However, let's turn to pubmed for "is it important to use probiotics and antibiotics, or are just antibiotics okay".

There's a lot talking about probiotics in the treatment of Heliobacter pylori (ulcers) and how probiotic-treated patients' microbiome more resembles healthy people's. There's even a study that says that it makes the treatment itself more effective and has a lower rate of adverse events. And a pretty large meta-analysis found that timely administration of probiotics prevented C. difficile infection in hospitalized patients up to 50%. There is good evidence that probiotics affect the microbiome during antibiotic administration. There's also decent evidence that timing matters.

 

[duncan]

So how long is too long for abx?

I have been on so many abx for so long; I have been lucky - so far.

You have to weigh the risk/benefit ratio of what you are trying to treat, against what you are treating it with. We do that with limited insight.

It can be a crap shoot.

Most people I know advise against any sort of prolonged abx therapy, for reasons such as those touched upon by @snowathlete .

 

[Banana94]

Thank you all for your experiences!
My originally question was about your experiences with ABX for treating the GUT! And not if you took ABX for infections of the system (Borrelia, Bartonella etc.)
@msf I will PM you about your opinion of KDM reason treating the gut with ABX! Im very intersted!

Thanks also for the warning! If I feel worse or feel my gut gets to much damaged I'm gonna stop taking ABX! I'm now 2 months on Azithromycin if KDM wants me to take ABX longer than 6 month tha I will stop.
He prescribes now Mesalazin which is a medicin for people with colitis ulcerosa maybe to protect from damages.??

 

[Banana94]

So how long is too long for abx?

I have been on so many abx for so long; I have been lucky - so far.

You have to weigh the risk/benefit ratio of what you are trying to treat, against what you are treating it with. We do that with limited insight.

It can be a crap shoot.

Most people I know advise against any sort of prolonged abx therapy, for reasons such as those touched upon by @snowathlete .

So how long is too long for abx?

I have been on so many abx for so long; I have been lucky - so far.

You have to weigh the risk/benefit ratio of what you are trying to treat, against what you are treating it with. We do that with limited insight.

It can be a crap shoot.

Most people I know advise against any sort of prolonged abx therapy, for reasons such as those touched upon by @snowathlete .

Hey duncan

For what infections do you take Abx? For the gut? Are you A patient of KDM?

 

[duncan]

For what infections do you take Abx?

Borrelia and Bartonella, principally.

For the gut?

No.

Are you A patient of KDM?

No

Sorry for distracting from the thread. I am a scarecrow at times and my attention span can be as far as the last post written.

 

[snowathlete]

Well; if it leads to intestinal scarring, probably not. However, let's turn to pubmed for "is it important to use probiotics and antibiotics, or are just antibiotics okay".

There's a lot talking about probiotics in the treatment of Heliobacter pylori (ulcers) and how probiotic-treated patients' microbiome more resembles healthy people's. There's even a study that says that it makes the treatment itself more effective and has a lower rate of adverse events. And a pretty large meta-analysis found that timely administration of probiotics prevented C. difficile infection in hospitalized patients up to 50%. There is good evidence that probiotics affect the microbiome during antibiotic administration. There's also decent evidence that timing matters.

I agree there's good evidence that probiotics protect against c-diff, and other pathogenic overgrowth, but that's not what I'm meaning. I don't think there is much good evidence that probiotics stop your friendly gut flora from getting destroyed by abx and I think that matters a great deal. Conventional wisdom seems to be that probiotics protect your gut from the damage to your gut flora caused by abx, but I haven't seen a lot of good evidence to support that. So while taking a large dose of the best probiotics you can get while taking abx is probably a good idea because it may stop those specific LABs disappearing, and it probably crowds out a bunch of nasties and therefore stops you getting a bad infection like c-diff, common friendly gut bacteria like Roseburia, Ruminococcus etc. are still going to get killed off by the abx if you take them for too long.

 

[snowathlete]

Thank you all for your experiences!
My originally question was about your experiences with ABX for treating the GUT! And not if you took ABX for infections of the system (Borrelia, Bartonella etc.)
@msf I will PM you about your opinion of KDM reason treating the gut with ABX! Im very intersted!

Thanks also for the warning! If I feel worse or feel my gut gets to much damaged I'm gonna stop taking ABX! I'm now 2 months on Azithromycin if KDM wants me to take ABX longer than 6 month tha I will stop.
He prescribes now Mesalazin which is a medicin for people with colitis ulcerosa maybe to protect from damages.??

That's interesting to hear, about KDM now prescribing mesalazine routinely (if I understood correctly). That's the drug I now have to take every day since UC and probably will have to take for the rest of my life. It reduces intestinal inflammation. So probably a good idea to take with abx to reduce the likelihood of IBD developing, though it probably won't do much to stop your gut flora dying from the abx.

ps..sorry if I diverted your thread at all.

 

[Banana94]

That's interesting to hear, about KDM now prescribing mesalazine routinely (if I understood correctly). That's the drug I now have to take every day since UC and probably will have to take for the rest of my life. It reduces intestinal inflammation. So probably a good idea to take with abx to reduce the likelihood of IBD developing, though it probably won't do much to stop your gut flora dying from the abx.

ps..sorry if I diverted your thread at all.

No problem.. was just a reminder to come back to KDM's gut treatment. I think he prescribes it routinely because I dont have (yet) UC. (Hope i dont get it)
I wonder why he doesnt recommend low carb diet, because that helps many me cfs people also with the gut.

I think that Mesalazin should also protect the tissue. If my bad flora dies and good flora regrows, I dont have a problem with this.

 

[ljimbo423]

I wonder why he doesnt recommend low carb diet, because that helps many me cfs people also with the gut.

That's a question I have been asking myself for a long time. A low carb diet has helped me as much or more than any other treatment.

So I am also very curious as to why he doesn't suggest this as part of a treatment plan in gut treatment.

Jim

 

[JaimeS]

A low carb diet has helped me as much or more than any other treatment.

Ditto!

 

[Banana94]

In my opinion, if the bad flora is amongst other things fed by carbs, one cant feed them with them with their favourite food and kill them at the same time with ABX. Maybe it works for a short time but they will regrow. I think one have to cut out what they eat and then try ABX. I wonder if my stool analysis came out different if I were on a low carb before the testing.
KDM ignores some important things which helped many patients. BUT he tests also for things MANY OTHER DOCTORS IGNORE.
I cant comprehend his way of treating..