POLL: Have Antibiotics Helped Your ME/CFS Symptoms?

[Jwarrior77]

Have Antibiotics of any type helped your ME/CFS symptoms? If yes please say what type of antibiotics helped you. I also included an option in which antibiotics helped you, but not solely related to ME/CFS symptoms.

 

[Wishful]

Most antibiotics are taken for symptoms unrelated to ME, such as infected teeth, and yes, they worked for that. I think I've had several varieties of penicillin, plus cephal-something, and they had no effect on any ME symptoms.

 

[Learner1]

Yes, killing the chlamydia pneumoniae and mycoplasma pneumonie 5vst were sapping my energy helped.

However, they created an oxalates problem by killing off oxalates degrading bacteria in my gut, creating sharp crystals that damage mitochondria and organs, deplete mineralss, create oxidative stress, and cause thyroid problems and osteoporosis just from eating most common plant based foods.

I think you need to add a question: "Did antibiotics cause you long term damage?"

 

[manasi12]

Yes, killing the chlamydia pneumoniae and mycoplasma pneumonie 5vst were sapping my energy helped.

However, they created an oxalates problem by killing off oxalates degrading bacteria in my gut, creating sharp crystals that damage mitochondria and organs, deplete mineralss, create oxidative stress, and cause thyroid problems and osteoporosis just from eating most common plant based foods.

I think you need to add a question: "Did antibiotics cause you long term damage?"

Which antibiotics may be safer regarding oxalate? I need to take frequent antibiotics for a lichenoid rash/ infection in oral cavity since 2 years after wisdom teeth extraction. So far no one has been able to pinpoint the causative microbe. But need to take antibiotics (alternating amoxicillin, cephalosporins) almost every 3 weeks as only it reduces pain and redness. So curious..

 

[Learner1]

From WebMD:

"The five antibiotic classes newly linked to kidney stone risk included sulfas (Bactrim, Gantanol); cephalosporins (Keflex); fluoroquinolones (Cipro); nitrofurantoin/methenamine (Macrobid, Hiprex); and broad-spectrum penicillins. No risk was observed among seven other classes of oral antibiotics."

My friend, who'd been ill for 30 years found she had an anaerobic infection in the cavity where two of her wisdom teeth had been removed years before. She had a dentist clean it out and use antibiotics, but 18 months later, it had moved into her jawbone. Worst case, it could lead to her losing her jawbone. She finally had a biologic dentist clean it out, use ozone gas to go after the bacteria, and then it was packed with antibiotics and antibacterial herbs. She finally got rid of the infection.

Continued use of antibiotics is likely to alter one's microbiome. Maybe it would be wise to find a new strategy?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4243235/

 

[manasi12]

@Learner1 thanks for your input. Yes, I was also scared at the possibility of jaw bone infection. But oral surgeons and otolaryngologists ruled it out(hopefully) with CBCT and CT scan. May be cavitation but don't have any reliable holistic dentist here. I have Sjogrens and APS, so may be underlying immunodeficiency too. 5 rheumatologists visits but none tested for it. So only feasible option is prophylactic antibiotics.
This extraction has been a nightmare as it messed my bite and cause TMJD.

 

[Krokus]

In my case the use of a fluoroquinolone has caused MCS and CFS

 

[heapsreal]

For me i get chronic sinusitis. It adds another layer of fatigue to cfs. Abx have been the best treatment for me and sinuses. Mostly bactrim or augmentin.

 

[Dakota15]

Tried a course of antibiotics last March.

Ended up with 6 apthous ulcers in my terminal ileum after a week on antibiotics. No idea what to make of that for the puzzle that is ME/CFS or MCAS.

I know Dr. Chheda believes that's indicative of a MCAS reaction.

 

[percyval577]

A course of oxycycline was it, that probably made my pre-ME very noticeable for half a year, and might therefore have played a role in the pathogenesis.

I think a general problem with Abx is not only that it may diminish some good bacteria, but also that it elevates the fungi.

 

[heapsreal]

A course of oxycycline was it, that probably made my pre-ME very noticeable for half a year, and might therefore have played a role in the pathogenesis.

I think a general problem with Abx is not only that it may diminish some good bacteria, but also that it elevates the fungi.

When abx were popular in cfs, mycoplasma era etc it was common to follow a course of antibiotics with probiotics and while on abx take nystatin an antifungal. Probably good practice in general if you have to take abx for some other reason like a chest infection.

Personally i use sacchromyce bouldarri a non pathogenic yeast while on abx that basically overcrowds pathogenic yeast/fungus/bacteria and stops it taking a hold. After stopping abx and sacchromyce, i cant recall exactly but the sacchromyce does leave the gut after afew days. Like above start taking probiotics. All i can say is that its helped me avoid guts issues from abx. Sacchromyce is also good general gastro/diarrhoea bugs.

 

[mrmichaelfreedmen]

When abx were popular in cfs, mycoplasma era etc it was common to follow a course of antibiotics with probiotics and while on abx take nystatin an antifungal. Probably good practice in general if you have to take abx for some other reason like a chest infection.

Personally i use sacchromyce bouldarri a non pathogenic yeast while on abx that basically overcrowds pathogenic yeast/fungus/bacteria and stops it taking a hold. After stopping abx and sacchromyce, i cant recall exactly but the sacchromyce does leave the gut after afew days. Like above start taking probiotics. All i can say is that its helped me avoid guts issues from abx. Sacchromyce is also good general gastro/diarrhoea bugs.

I did the whole "probiotic thing" during and post my antibiotic treatment, still ended up with what my MD has classified as "chronic fungal disease". Which is resistant to many typical antifungals especially Nilstatin.

Dr John Chia has found only a small percentage of his patients actually benefit from antibiotics(aside from treating SIBO associated with EV infection)as only a small percentage have mycoplasma/chlamydia pneumoniae infections.

You may find you have bacterial biofilm within your sinuses if this is a chronic problem? You should try antibiofilm nasal washes in combination to your oral antibiotics.

 

[mrmichaelfreedmen]

In my case the use of a fluoroquinolone has caused MCS and CFS

fluoroquinolone has a black box warning directed by the FDA as post marketing has unveiled multiple serious side effects and complications including spontaneous tendon rupture.

 

[heapsreal]

I did the whole "probiotic thing" during and post my antibiotic treatment, still ended up with what my MD has classified as "chronic fungal disease". Which is resistant to many typical antifungals especially Nilstatin.

Dr John Chia has found only a small percentage of his patients actually benefit from antibiotics(aside from treating SIBO associated with EV infection)as only a small percentage have mycoplasma/chlamydia pneumoniae infections.

You may find you have bacterial biofilm within your sinuses if this is a chronic problem? You should try antibiofilm nasal washes in combination to your oral antibiotics.

I didnt mention it but once in awhile i will do a course of one of the systemic antifungals like nizoral. I actually dont have gut issues but do the things ive mentioned as a preventative.

For biofilms i have used the beg nasal spray which has helped for longer periods of time than abx themselves. Recently have also used diluted antiseptics which have helped just like the beg spray or bactroban spray where i have had longer periods off abx after use. Thats all along with regular saline sinus irrigation.

We came to the conclusion several years back that my sinus issues are from my chronic moderate neutropenia, after several scans and extensive immune tests.

So it can take awhile to dive deep and sort out sinuses.
Fungal treatments for me a preventative measure. Augmentin, bactrim and doxycycline on occassions help treat the bacterial infection along with the different sinus sprays ive used.

My dr has said swabs are inaccurate as one cant reach deep into the sinuses unless one drills through the forehead into the frontal sinuses but research that he has seen and has been involved in, is that in many its usually some sort of staph infection or even mrsa , which explains why the abx i mention have helped. Because these abx are a broad spectrum and can also kill a variety of bugs, bactrim is well known for killing community acquired MRSA.

My neutropenia is probably from a combination of things, one actually being a chronic bacterial infection like sinusitis but also chronic viral infections i have ie cmv, varicella, ebv and the low nk function would also indirectly effect neutrophils.

Just my opinion but reoccurring bacterial sinusitis issues in cfsme are so common because of the poor immune function. So like HIV they are susceptible many different coinfections because of their crappy immune system, so are cfsers.

 

[Slushiefan]

I take 3 500mg ciprofloxacin daily. I started at 2 but it helped so much I pushed further. I have been taking it several years.

I got here because I read that it was used to treat arthritis at one time, so I tried it for myself. I noticed that it improved my fatigue and sleepiness a good bit. Later I also read a study about how it helped with Gulf War Syndrome.

How and why does it help? Of course, no one has studied this and no one knows really knows.

There are definitely antibiotics that promote wakefulness. In particular, clarithromycin has been shown to work as such and in a study treating excessive daytime sleepiness or EDS it was found to be as effective as provigil! I will be testing clarithromycin when I can get a hold of some. Cipro is widely available while clarithromycin is not. There are smaller studies showing Cipro has the same affect as well.

I also think there is some effect due to killing off of pathogens; but just how much I don't know.

I think cfs drains our energy to very low levels, and we then become extremely sensitive to anything that upsets our balance. Normal people have extra energy that 'hides' the draining effects of everyday things; such as the immune response to common bacteria in our body, thinking deeply, and exercise to the point of creating a recovery response (we call it PEM, other call it rest).

I conclude then that antibiotics, specifically those with a stimulating effect, have a two pronged effect that improves things. But it does not seem to me that this is attacking the root cause in any way.


Hope this helps someone...

 

[Dwarla]

I took flagyl after a colonoscopy which gave me giardia. I felt wonderful while on it. I had to take it two different times and both times, it was like never having cfs! I told my doctor and of course she didn't really care.

 

[Pauline91]

I took flagyl [...] it was like never having cfs!

Hi Dwarla, the theory in functional medicine is that parasites are thriving in a toxic terrain, feeding off toxins and bacterias, many people with Lyme / CFS / CIRS are feeling better when treating parasites. Have you been able to do a longer parasite cleanse? How are you doing now?

 

[Pauline91]

I take 3 500mg ciprofloxacin daily. I started at 2 but it helped so much I pushed further. I have been taking it several years.

Please don't encourage people to take fluoroquinolones antibiotics! Those are ruining thousands of lives. People end up in wheelchair because of these dangerous antibiotics. I hope you didnt have any side effect so far, and also know that just because you've taken it before with no side effects, doesn't mean you will always tolerate it. Many people have been hurt and yet they had taken Cipro in the past without having any issue.

 

[heapsreal]

I did the whole "probiotic thing" during and post my antibiotic treatment, still ended up with what my MD has classified as "chronic fungal disease". Which is resistant to many typical antifungals especially Nilstatin.

Dr John Chia has found only a small percentage of his patients actually benefit from antibiotics(aside from treating SIBO associated with EV infection)as only a small percentage have mycoplasma/chlamydia pneumoniae infections.

You may find you have bacterial biofilm within your sinuses if this is a chronic problem? You should try antibiofilm nasal washes in combination to your oral antibiotics.

Oldish post but reply about sinuses here. Recently had a ct scan for sinuses and because headaches have been constant since before Christmas.

Scan showed sinuses clear but had a half empty sella. Basically the pituatory gland sits in a box/sella and one issue that can happen is cerebrospinal fluid leaks into the sella and pushes the pituatory or flattens it. On a scan it looks half empty but its filled with fluid. I see a neurologist in a few weeks for this.

What i can gather is that the fluid occupying the sella can cause chronic headaches and there can be hormone issues from this flattening of the pituatory. Its common to have high intracranial pressure and cerebrospinal fluid can leak out of the nose which may account for my post nasal drip/sinusitis. Im guessing it may be easier to get sinusitis as well but also because it does respond to antibiotics.

When reading up on it , they mention a lumbar puncture i guess to measure intracranial pressure and probably test the fluid for infections, which im going to ask for anyway

 

[Stretched]

@heapsreal My neurologist has recommended a lumbar puncture - looking for a protein (?) prior to trying a speculative IVIG. I’m wary of this procedure, actually afraid of possible side effects. How about you; have you ever had one?