Can you get permanently worse from antibiotics?

[elinaims]

So I've been diagnosed with ME/CFS and now want to investigate wether I have Lyme Disease and/or co-infections. The reason that I believe so is because I had Lyme Disease when I was 4 for a few weeks, I got penicillin and got fully well. And that was the end of it. Anyway if I also/or have Lyme Disease I'm considering taking antibiotics.

However, I am deadly afraid of getting permanently worse. In 2016 I took CBD oil because I had heard people raving about it and thought it didn't have any risks. However within 36 hours of taking it I got bedbound, for 6 weeks. I never want that to happen ever again, and I'm afraid it could happen with antibiotics?

Does anyone know if people can get permanently worse like this for an extensive period of time? I've talked to a few people and they say that their herxes have been temporary, lasting a few days. I guess I could survive that if I knew it's gonna pass. So...

Does anyone know if people has gotten permanently worse? I feel like it's useless to ask doctors that because they see what they wanna see.

Also, if a person with ME/CFS that does not have Lyme Disease takes antibiotics, is it possible that they could herx?

 

[Wishful]

The problem with ME/CFS is that we all respond differently. You can get a dozen people to say they had no problem from antibiotics, but you could end up having a bad reaction. Conversely, the dozen could say they had bad reactions, and you might have none. Of course, that's true of eating apples or bread too; anything can be a problem for someone, and a possible treatment for others.

It is fairly useless to ask doctors about it, since few know how to deal with ME/CFS, and even the experts in this disease can't know how you will respond to a treatment.

I've had antibiotics several times since developing ME/CFS, with no problems. No lyme though.

 

[elinaims]

Yeah I see, thank you. So it's definitely possible to have a bad reaction then? Getting permanently worse?

 

[Wishful]

Some people here have said that they've gotten much worse long-term, but I think that's usually from physically overexerting themselves. You'll have to wait for someone who has taken antibiotics for lyme or other infections and had a bad reaction to post about it.

My experience is that I haven't had anything trigger a 'permanently worse' effect...after the initial ME trigger, that is. When this seemed to be a type IV food sensitivity, food poisoning from some spoiled coconut milk seemed to trigger worse symptoms that weren't going away (although later it turned out to have cured the type IV reaction). Prednisone got me past that, and I settled down into what now seems to be basic ME/CFS symptoms. So, the result was somewhat different symptoms, but not really worse overall.

Someone else, in another thread, had all his silver fillings removed in the expectation that it would improve his health. It made him so much worse that he was considering having silver put back in. It was likely the stress of the dental work that messed up his immune system and worsened his ME/CFS.

My belief is that it's possible to trigger long-term worsening, but not very likely. If you really do have a serious bacterial infection, antibiotics are more likely to provide a long-term improvement than worsening. Don't get silver fillings removed though...

 

[elinaims]

Okay, thank you. That feels reassuring. I've read about people that took antibiotics for two years and just got worse and worse. I'm thinking though that if a couple of months passes and you notice a decline rather than improvement, you should stop immediately.

 

[Wishful]

Well, if you do have lyme disease, the course of antibiotics should be 2-4 wks. If someone is taking them for years, I expect that they either have some other serious medical issues (which could cause the decline), or they are causing serious medical issues.

Given the importance of the gut biome, and the sensitivity some ME/CFS victims have to gut biome disturbances, I certainly wouldn't recommend long-term antibiotics. If you want to experiment with microbiome changes, try probiotics, prebiotics, and dietary variations first. While food poisoning (and major flushing out of my microbiome) had the wonderful effect of curing my type IV food sensitivity, I hesitate to recommend playing with food poisoning. There are other less messy things to try first.

 

[elinaims]

Well if I have chronic Lyme disease then 2-4 weeks won’t be nearly enough. So if I do have it then I’ll have to give it a try for at least a few months

 

[ljimbo423]

I never want that to happen ever again, and I'm afraid it could happen with antibiotics?

Does anyone know if people can get permanently worse like this for an extensive period of time?

I believe, after 11 years of research and trying many different protocols to treat my CFS.

That it was caused by too many courses of antibiotics. Which lead to severe intestinal dysbiosis, increased intestinal permeability and bacterial translocation, which lead to my CFS.

This is what Chris Armstrong, a leader in CFS research says about CFS-

49 minutes 20 seconds in-
"When you've got bacteria promoting inflammation in the blood or in the body for along period of time , it exhausts the bodies resources by feuling this chronic immune activation and in turn eventually

you get this fatigue or starvation phenotype that's occuring". "Bacterial translocation is normal, it does happen to everyone, but its the type of bacteria that you are bringing and the level or the number of them that might be posing a threat".

LINK

This is another quote from Chris Armstrong-

"Well we all experience a bacteremia when we exercise. The type of bacteria that enter your bloodstream are usually quite controllable by your immune system but if your gut is further

compromised they may release more bacteria into your blood or more pathogenic species or your immune system may already be depleted. This is the concept for the chronic sepsis or SIRS and this is what I think may be behind PEM."

LINK


EDIT- In this video, at 14:00 in. It shows that CFS is 100% genetic expression match to systemic inflammatory response syndrome (SIRS, as Chris Armstrong mentions above in the quote I posted).LINK
Jim

 

[elinaims]

That's awful! Thank you for that information. I don't think it relates to my case though because I've only had antibiotics once in my life when I was 4 for like 2 weeks.

 

[ljimbo423]

That's awful! Thank you for that information. I don't think it relates to my case though because I've only had antibiotics once in my life when I was 4 for like 2 weeks.

Stress is also another big cause of increased intestinal permeability and all the symptoms it causes. There are many studies that show this, here is just one-

Abstract
Chronic non-communicable diseases (NCDs) are the leading causes of work absence, disability, and mortality worldwide. Most of these diseases are associated with low-grade inflammation.

Here, we hypothesize that stresses (defined as homeostatic disturbances) can induce low-grade inflammation by increasing the availability of water, sodium, and energy-rich substances to meet the increased metabolic demand induced by the stressor.

One way of triggering low-grade inflammation is by increasing intestinal barrier permeability through activation of various components of the stress system. Although beneficial to meet the demands necessary during stress, increased intestinal barrier permeability also raises the possibility of the translocation of bacteria and their toxins across the intestinal lumen into the blood circulation.

In combination with modern life-style factors, the increase in bacteria/bacterial toxin translocation arising from a more permeable intestinal wall causes a low-grade inflammatory state.

We support this hypothesis with numerous studies finding associations with NCDs and markers of endotoxemia, suggesting that this process plays a pivotal and perhaps even a causal role in the development of low-grade inflammation and its related diseases.

LINK

Jim

 

[Wonkmonk]

Which lead to severe intestinal dysbiosis, increased intestinal permeability and bacterial translocation, which lead to my CFS.

I did 4 weeks of high-dose antibiotics (penicillin-types and erythromycin) for possible streptococcal infection. It has not affected my CFS symptoms much, in the weeks afterwards, I acquired at least two new pollen allergies which I never felt before (birch and beech pollen) and my tinnitus worsened to a point that it starts bothering me now (I had it since childhood, but it was rather low intensity and didn't bother me at all).

I suspect that the penicillin-type antibiotics disrupted the microbiome which led to the new allergies. 8 weeks after the last antibiotic infusion, I still have a thick yellowish covering of the tongue, which is likely due to bad bacteria or fungal overgrowth. Worsening of tinnitus is a well-know side effect of erythromycin (though it should actually not be permanent).

So besides the question if the antibiotics could make existing CFS worse, there is also the question of the "regular" adverse effects they may have. But of course if Lyme is present, you probably have to try them.