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Antibiotic's - A Blessing and a Curse ?

melamine

Senior Member
Messages
341
Location
Upstate NY
@Iquitos - It's good that you didn't just stop the acyclovir. Where did you get the idea to use it for the symptoms that you described, which sound "off label". You obviously know what you're doing since you've found something that has worked so well for you. You must be tempted to go off them from time to time to see if....?
I didn't know doxy was used prophylactically for malaria.
Did you have any problem getting prescriptions for either or do you buy without?

I have been getting bad reactions to dental surgeries that escalate over time and involve a combination of drugs, none of which by themselves are known to cause the kind of symptoms and progression of neuropathy that I've been experiencing following each one. Amoxacillin and dental anesthetic without epinephrine are the usual drugs, plus a pain killer. For the last two it was Aleve but others have been different. I had also been eating more probiotics and probiotic foods after the surgeries, the latter of which is high in glutamic acid, a substance I have found to be excitotoxic and neuropathically toxic.

However it seems that something to do with the surgeries has been sensitizing me and I am still experiencing increased symptoms months after having removed potentially offending foods and drugs. I am never fully recovering from them and to the extent I have in the past, it took nearly a year. The nerve damage has been progressive and irreversible, and I will be needing more surgeries to complete work, so it isn't a matter of simply waiting to heal.

I am trying to get a sense of whether I should be looking at a delayed allergy or drug toxicity because my experience is much like the pattern of symptoms some people have developed post- fluoroquinolone use, even though that is a whole different class of drug and involves fluoride, so there doesn't seem to be any direct take-away to be applied to my situation.

I did recently come across something interesting - that amoxicillin, and maybe all of that class, should not be prescribed to anyone with mono: I have chronically elevated and rising titers (last checked a few years ago) to EBV decades after acute EBV/mono.
 

Iquitos

Senior Member
Messages
513
Location
Colorado
@melamine "It's good that you didn't just stop the acyclovir. Where did you get the idea to use it for the symptoms that you described, which sound "off label". You obviously know what you're doing since you've found something that has worked so well for you. You must be tempted to go off them from time to time to see if....?
I didn't know doxy was used prophylactically for malaria.
Did you have any problem getting prescriptions for either or do you buy without?"

I got the idea for acyclovir from two "sources." Back in the 90's I was tested for EBV and the doc told me my titers were "600 times normal" but he didn't know what that meant and there was no treatment. Decades later I read the story of another patient who had a doc that tested for several viruses and then treated for what was found. She used famvir but that was not available to me where I was living so I got the next best thing, acyclovir. I researched what antiviral might be effective against EBV and acyclovir was one possibility.

I was living where drugs are all over the counter so getting them was no problem. My doc there was willing to support whatever I wanted to try and to do the blood tests to check on liver and kidney function. Now that I'm back in the US, I order from an online pharmacy that doesn't require a prescription.

Before I left for malaria territory, I had researched what to do about that and found that doxy is prophylactic against it. Got a prescription from my US doc at that time. Didn't need one after I got there.

BTW, the only docs that have ever listened to me without disdain and disbelief have been DOs, not MDs.

And, yes, I have stopped them both at times, mainly because I ran out and hadn't planned ahead in time to get more. Without an antibiotic of some kind my back pain comes back and without acyclovir my ataxia gets worse.

I wish you good luck with your dental issues. I need dental work myself and have been postponing dealing with it due to stories like yours and similar ones from other patients.
 

melamine

Senior Member
Messages
341
Location
Upstate NY
I need dental work myself and have been postponing dealing with it due to stories like yours and similar ones from other patients.

Thanks for sharing. I find stories more useful than theories. I have been thinking of doing some kind of antibiotic trial myself at some point. One thing that has just not worked for me is LDN.

Be sure you look into whether you'll need to stop your other antibiotics for a short time before any dental antibiotic because they usually recommend that.

I think you would probably be ok with Amoxacillin. It's considered very safe if a person is not actually allergic to that class and I did not have a problem with it myself for many years. I was routinely prescribed 4 x 500mg before invasive surgeries where the gum was being cut. It's not considered necessary for an extraction alone.

I recently read of someone losing 15 lbs and suddenly experiencing a terrible toxic reaction to an MS med. she had been taking daily. The symptoms were mainly psychological and embarrassing but at least she recovered quickly when her doctor realized what had happened. Being in the lower range of "average" weight I wonder if a lower dose of Amoxacillin would have made any difference for me. Or less dental anesthetic......recent ones have been very protracted and because I am sensitive to epinephrine, I have asked that it not be used.

Those who are sensitive to epinephrine get a racing heart and feel uncomfortable very quickly. It can cause a feeling of psychological anxiety too - just the thing you don't want more of when you go to the dentist! But the amount used can be reduced and using an anesthetic without it means having to use much more, so if there is concern about toxicity (even though it's said not to be a problem) then it might be better to ask for an anesthetic with a small amount of epinephrine. They say that the discomfort passes quickly and that has probably been my experience when only a small amount is used. There are different kinds of anesthetic that you can ask the dentist about.

I am trying to get a sense of the capacity of olive leaf extract to be used prophylactically in place of an antibiotic for dental surgery, but because no one is going to recommend it being used that way out of caution, there is no direct information to be found on the subject. My only other option might be to go with one of the mycins, if it would be suitable and safer.
 

Gingergrrl

Senior Member
Messages
16,171
A black box warning now on fluoroquinolones is some insurance but not enough.

The last time I checked there are now five FDA black box warnings on fluoroquinolones (for tendon damage/rupture, for peripheral neuropathy, for psychiatric issues, for severe potential harm if you have myasthenia gravis, and for mitochondrial damage.) I don't know how many more are needed for these meds to be taken off the market. Sadly, most doctors still ignore these warnings and never relay the info to the patients.

I have never been prescribed fluoroquinolones and yet I am experiencing the same pathological pattern of symptoms following the use of Amoxicillin, or Amoxicillin primarily, often, but not always, in conjunction with a pain killer, and often dental anesthetic as well, but not always.

Even though any individual can have a horrific reaction to any antibiotic (or any medication) there is no class of antibiotics as dangerous as the fluoroquinolones. The FQ's can create a neuro toxicity syndrome which I experienced in 2010 and took me about a year and a half to recover.

I did recently come across something interesting - that amoxicillin, and maybe all of that class, should not be prescribed to anyone with mono: I have chronically elevated and rising titers (last checked a few years ago) to EBV decades after acute EBV/mono.

This is true and no one with active mono should be given amoxicillin as it can cause a severe rash (that is mistaken for an allergic reaction.) I don't have a link for this but can find one if you need it.
 

melamine

Senior Member
Messages
341
Location
Upstate NY
Sadly, most doctors still ignore these warnings and never relay the info to the patients.

It should be criminally negligent not to.
I was reminded of these poisons when I read a news item today about some horses that are slowly dying of heart failure because of toxic, antibiotic-laced feed they were given by mistake, which was intended for chickens and cattle only (for human consumption, of course).

This is true and no one with active mono should be given amoxicillin as it can cause a severe rash (that is mistaken for an allergic reaction.)

Yes, if you find the link, please post. I intend to look into the contraindication further. I wish I had gotten a rash because it would have alerted me sooner. When I started developing a rash shortly after starting Plaquenil I stopped it immediately.
 

Gingergrrl

Senior Member
Messages
16,171
@melamine, I will try to find a link tomorrow when I am more alert and post it here.

ETA: I just copied this paragraph below from webmd.com and if you do a Google search of "mono" "amoxicillin" and "rash" you get tons of websites.

Taking antibiotics such as amoxicillin or ampicillin may cause a rash in many people who have mono.1 A rash caused by antibiotics can often be a first sign that the person has mono. The rash is not an allergic reaction.2
 
Last edited:
Messages
1
@Iquitos - It's good that you didn't just stop the acyclovir. Where did you get the idea to use it for the symptoms that you described, which sound "off label". You obviously know what you're doing since you've found something that has worked so well for you. You must be tempted to go off them from time to time to see if....?
I didn't know doxy was used prophylactically for malaria.
Did you have any problem getting prescriptions for either or do you buy without?

I have been getting bad reactions to dental surgeries that escalate over time and involve a combination of drugs, none of which by themselves are known to cause the kind of symptoms and progression of neuropathy that I've been experiencing following each one. Amoxacillin and dental anesthetic without epinephrine are the usual drugs, plus a pain killer. For the last two it was Aleve but others have been different. I had also been eating more probiotics and probiotic foods after the surgeries, the latter of which is high in glutamic acid, a substance I have found to be excitotoxic and neuropathically toxic.

However it seems that something to do with the surgeries has been sensitizing me and I am still experiencing increased symptoms months after having removed potentially offending foods and drugs. I am never fully recovering from them and to the extent I have in the past, it took nearly a year. The nerve damage has been progressive and irreversible, and I will be needing more surgeries to complete work, so it isn't a matter of simply waiting to heal.

I am trying to get a sense of whether I should be looking at a delayed allergy or drug toxicity because my experience is much like the pattern of symptoms some people have developed post- fluoroquinolone use, even though that is a whole different class of drug and involves fluoride, so there doesn't seem to be any direct take-away to be applied to my situation.

I did recently come across something interesting - that amoxicillin, and maybe all of that class, should not be prescribed to anyone with mono: I have chronically elevated and rising titers (last checked a few years ago) to EBV decades after acute EBV/mono.

Hi Melamine,

Can you tell me more details on how your neuropathy started related to the antibiotics?

I have read studies that Ampicillin, which is very similar to Amoxicillin, can damage mitochondria. But if this was the case, there would be a lot more people with damage from penicillins which is the most commonly prescribed abx.

I suspect toxicity as well since my symptoms began soon after oral surgery and was given amoxicillin and ibuprofen.