Antibiotics in ME/CFS -- any studies?

[JaimeS]

Hey folks -- are there any peer-reviewed studies that show antibiotics (not anti-virals) as a treatment, or part of a treatment plan?

Hard to search for something so broad-based. Ringing any bells for people?

Thanks as always, community! <3

Jaime

 

[edawg81]

I'll take a stab at this:

https://academic.oup.com/cid/articl...ic-Chlamydia-pneumoniae-Infection-A-Treatable

https://www.jstage.jst.go.jp/article/internalmedicine/44/12/44_12_1258/_article

 

[aquariusgirl]

Have you checked 're: Weldon & Stratton protocols?

 

[Moo Khaau]

There is one for azithromycin here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1562448/
However, they only used Fukuda criteria for diagnosis...

 

[JaimeS]

Thank you, community! <3

 

[JaimeS]

I'll take a stab at this:

https://academic.oup.com/cid/articl...ic-Chlamydia-pneumoniae-Infection-A-Treatable

https://www.jstage.jst.go.jp/article/internalmedicine/44/12/44_12_1258/_article

These are both great!

There is one for azithromycin here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1562448/
However, they only used Fukuda criteria for diagnosis...

Better than Oxford! Thanks.

 

[Subtropical island]

Thanks for this thread! It helped me decide to try something I was otherwise avoiding.

I tried metronidazole just recently.
First couple of days were no change (I already had all the symptoms they list as side effects: food going straight through me and coming out like vomit, nausea, pain, blah blah blah -to much effort to go back and find the list but yes, had them all).
Then it felt like a cure. I could use my brain again, I've gone a bit drunk with the crazy thrill of being able to use words again, I can understand what people mean when they say things, I wasn't getting those insane heart things where my pulse drops to 30-something bpm for a minute when active, or the thing that means I get freezing cold on a summer day when wearing 3-4 layers of wool and everyone else is in t-shirts (first time I realised this was a real symptom is when I was trying to offer people blankets on such a day), or sweating so hard my clothes were weighed down with sweat.
I took notes, best I stop trying to remember details and just ramble: if anyone wants it I can go find my notes. But really really good. I thought/hoped maybe I was just still weak from a chronic infection that lasted so many months/year but otherwise cured.
But I kept getting overoptimistic and doing too much: not just 20% more than my known limits but 200% or even 500% more. I attended a medical callout, I walked to the top of the hill, I did 3 loads of laundry and vacuumed half the house. Normally it's a good day to get away with a load of laundry (I usually need to do it over a week or so in stages). So the next day my symptoms would return. Not as bad as a crash but bad.

Other than pacing, and avoiding sulphites and preservatives, this is the only thing that has had any real, measurable impact on my function.

[In the end I crashed completely (from the optimistic overdoing). I've been unable to do anything but dress, eat a premade meal, drink, and sit looking at the view (each only for a few minutes before back to bed). When it's bad I feel like my nerves are screaming through from my hands to my stomach and brain. It takes all my considerable strength to simply bear it. As I recovered I started to itch at doing something, so many things, but know that doing anything, including reading (oh for the days when that was what I called rest), sets me back. You all know how important it is to not be in the crash. If I even focused on anything for more than 7minutes my ribs would force me to curl up, my hands shake erratically and I would get so cold, from the tips of my feet and in toward my centre til I couldn't get warm.

Sorry, got lost again, I'm still on the way up and overextending.]

The point is: I think it made a huge difference to my quality of life. But it was not a cure. I still have PEM, I still have to keep to my energy envelope. But now I can think, if I pace myself. I can read this blog in more than 1-2minute intervals. I can do 18 moves of tai chi (really helps with the back, although I can end up soaked in sweat and shaking afterward at the moment). And I'm not always going to the toilet.
The heart stuff and the cold are still happening but I think my limits before they hit are a little wider.

I don't recommend antibiotics. We just don't know enough about that ecology. But there are occasionally times, when the specific antibiotic matches a set of specific pathological parasites and bacteria for my example, when it does help. It's possible.

 

[Subtropical island]

Sorry, doing it again, I know this isn't a thread for personal anecdotes. That's why I liked it so much.

Just wanted to say that your enquiries are just so helpful @JaimeS, that they have made a world of difference to me.

There are too many anecdotes and theories and not enough rigorous testing and statistically meaningful, double-blinded placebo results. We don't have the health and energy to waste on anything less. (But also chasing down leads as you do is the best we have just now and I'm grateful).

Yes, ironic, I know.

 

[JaimeS]

Just wanted to say that your enquiries are just so helpful @JaimeS, that they have made a world of difference to me.

There are too many anecdotes and theories and not enough rigorous testing and statistically meaningful, double-blinded placebo results. We don't have the health and energy to waste on anything less. (But also chasing down leads as you do is the best we have just now and I'm grateful).

Sometimes I wonder who could possibly be more invested in the outcome than we are? That's why we work so hard to help ourselves, and each other.

Early on in PR, I made a rule to myself: every time I asked a question, I'd find one I could answer or a thread where I could contribute. Those interactions have been very important to me as I further formulate my concept of this illness, but more importantly, the tips and tricks here have saved me. Not sure what I would have done without PR, and fellow patients!

 

[BFitz89]

I took Amoxicillin and within a few days I had my initial crash. Over on Reddit I've read of a few others who also fell ill after a course of antibiotics.

This illness is very confusing.

 

[JaimeS]

I took Amoxicillin and within a few days I had my initial crash. Over on Reddit I've read of a few others who also fell ill after a course of antibiotics.

This illness is very confusing.

I do think it's the type, and what pathogen load you've got. I did pretty terribly on Amoxicillin, too; but ornidazole, which is the same class of antimicrobial as metronidazole did very well for me. I also felt borderline-cured. Didn't last, of course, in part because I had to stop eventually!

Also, I wonder if the "abx caused my ME/CFS" isn't a false equivalence. Perhaps it's the infection itself... which is, after all, happening in the same timeframe, and certain infections have been reliably associated with onset. I almost never took antibiotics before I became sick, but I have ME/CFS anyway.

 

[Subtropical island]

I took Amoxicillin and within a few days I had my initial crash. Over on Reddit I've read of a few others who also fell ill after a course of antibiotics.

This illness is very confusing.

I think that just means that the health of our guts might be a factor in the severity some of our symptoms.

And, in my case, that sometimes you catch a bug that you would normally just throw off but with ME/CFS you didn't and a little extra help is needed.
My doctor and I avoided the antibiotic for 6 months (despite clear fecal cultures) for this very reason: antibiotics are like spraying a field with broad spectrum pesticides - you don't do it without clear evidence that the horrific results will be better than any alternatives (of feeding the desireables). We would never have done it if there wasn't a specific set of pathogens all 90-100% responsive to the specific drug, or if I didn't have a recurring fever with no sign of viral infection, nor without giving it time on a healthy diet to balance itself out (which of course I have to do now anyway) and one more thing: I was especially desperate. It's just an anecdote.

That's why we're waiting with bated breath for more studies on specific pathogens, specific antibiotics, and specific strains or ways of finding useful sources in fecal transplants.
We need studies.

 

[Subtropical island]

I do think it's the type, and what pathogen load you've got. I did pretty terribly on Amoxicillin, too; but ornidazole, which is the same class of antimicrobial as metronidazole did very well for me. I also felt borderline-cured.

That's really interesting about the class of antimicrobial. We still don't know for sure if it was the specific sometimes-pathogens they found in the culture that were the problem or if it was something else in my system that the drug worked upon.

Also, I wonder if the "abx caused my ME/CFS" isn't a false equivalence. Perhaps it's the infection itself... which is, after all, happening in the same timeframe, and certain infections have been reliably associated with onset. I almost never took antibiotics before I became sick, but I have ME/CFS anyway.

Me too. Exactly.

I think of it in analogy:
In the US and the UK people try to get rid of nematodes in the soil of their gardens and orchards as they cause problems. They might use a pesticide or they might grow marigolds and they will say to anyone who listens that marigolds help everything.
However, the vast majority of nematodes in NZ are not pathogenic. They are niche organisms. The only nematodes here which are pathogenic are generalists.
As a rule of thumb, niche organisms tend not to become pests, and generalists do. But niche organisms are able to crowd out generalists in a healthy ecosystem.
Unfortunately, pesticides that kill nematodes tend to work best on the niche organisms becasue they need a stable, specific and thus diverse ecosystem. They can kill off the benign nematodes and not quite kill off the generalist nematodes and this inadvertently select for the worst of pathogenic nematodes.
So, you in the US might find that marigolds go with everything. But I might find that marigolds create/exacerbate a nematode problem I didn't have before.
(Only, in this case perhaps the situation was reversed.)

 

[BFitz89]

I do think it's the type, and what pathogen load you've got. I did pretty terribly on Amoxicillin, too; but ornidazole, which is the same class of antimicrobial as metronidazole did very well for me. I also felt borderline-cured. Didn't last, of course, in part because I had to stop eventually!

Also, I wonder if the "abx caused my ME/CFS" isn't a false equivalence. Perhaps it's the infection itself... which is, after all, happening in the same timeframe, and certain infections have been reliably associated with onset. I almost never took antibiotics before I became sick, but I have ME/CFS anyway.

It might just be coincidence. Who knows. I had mono in November and healed within two weeks from that. Was back to feeling normal so I went back to my normal routine with parenting, working, sports and socializing when I got the flu on NYE and then a chest cold two weeks later. Took the amoxicillin for the chest cold. Chest improved, but then 'mono' came back... Except my bloodwork showed I had cleared the virus. Been sick since.

I'm finally getting into a doc who seems to care enough to believe I'm actually sick. The first two back in March and May laughed when I asked if they believed in CFS. Apparently we're all hypochondriac somatizoids...

 

[TigerLilea]

I took Amoxicillin and within a few days I had my initial crash. Over on Reddit I've read of a few others who also fell ill after a course of antibiotics.

This illness is very confusing.

I'll go to my grave knowing that my CFS/ME started after taking Penicillin 26 years ago. A year and a half ago I was put on Amoxicillin and my CFS/ME has been much worse since that time.

 

[TigerLilea]

Also, I wonder if the "abx caused my ME/CFS" isn't a false equivalence. Perhaps it's the infection itself... which is, after all, happening in the same timeframe, and certain infections have been reliably associated with onset. I almost never took antibiotics before I became sick, but I have ME/CFS anyway.

I had a badly infected tooth for at least a year (possibly longer) that was symptom free. It wasn't until I had a cold for six months that would not go away and then had a tooth ache for two hours one evening, that the tooth infection was discovered. It was on day 3 of the antibiotics that my CFS/ME hit me. If it had been the infection that was the cause, then I would have come down with CFS/ME months before I did.

I read somewhere (possibly PR) that Ron Davis listed antibiotics as one of the possible triggers for CFS/ME.

 

[Subtropical island]

 

[BFitz89]

I had a badly infected tooth for at least a year (possibly longer) that was symptom free. It wasn't until I had a cold for six months that would not go away and then had a tooth ache for two hours one evening, that the tooth infection was discovered. It was on day 3 of the antibiotics that my CFS/ME hit me. If it had been the infection that was the cause, then I would have come down with CFS/ME months before I did.

I read somewhere (possibly PR) that Ron Davis listed antibiotics as one of the possible triggers for CFS/ME.

Yep. I'm of the opinion if I hadn't taken the amoxicillin I'd be 100% ok right now. I'm hopeful that if I can repair my gut maybe I'd gain some semblance of normalcy.