Topic: Is it better to change abx often to avoid resistance?
nefferdun
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Member # 20157
posted
Editing the topic because so it makes better sense I hope.
One person posted that her LLMD believes changing abx every few months to be very effective. I go through cycles of feeling very well and then go downhill again. It seems like I build resistance to whatever I am taking. Is this typical?
Do your doctors rotate your drugs a lot or just keep you on them until they quit working?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lululymemom
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posted
Think it was me who said that, lol! That really wasn't what I meant, though: You may have to change the title again after this reply.
My LLMD learned this after studying under another LLMD and seemed to think my reaction to changing antibiotics "proved" this theory (he wasn't trying to prove it, wasn't using me as a guinea pig, it just kind of happened and we both sat back and went, "Huh, isn't that interesting..."). He may even still be studying more about it (he's always trying to find new information about these infections--I got a good one!) as right now he's out of town again for two weeks. SIGH. Good for me, that i get a well-rounded doctor, but I wish he'd stay in one place sometimes!
I'm not sure it was as much about resistance as it was constantly changing the environment (created by changing antibiotics) helps kill the bugs better because knocking out one thing at a time encourages the other bugs to come to the surface. And when they do that, you go after them.
Like, I had Lyme and started doxycycline, but after a couple of months, the bartonella "woke up" and my body realized it had this other problem and started trying to fight it...
You hear this often, too, with Babesia: Someone will start fighting Babesia, begin getting it under control, then find out they "now have to deal with bartonella," because with the Babesia being defeated, suddenly the bartonella cannot hide underneath the symptoms caused by the immune system's "former" primary threat. Does that make sense?
If you take Doxycycline in order to treat Lyme, other infections (if there) will come to the surface as the levels of the primary infection get lower, because all the other stuff cannot stay hidden; the immune system is no longer distracted by this "terrible infection" and can now recognize there are other things around, too!
For the sake of this example let's say maybe, Babesia, because the doxycycline doesn't treat it. So you switch meds after a few months of doxy and decide to go after the Babesia that popped up...Maybe you didn't even know you HAD Babesia, but with the Lyme levels lowered from the doxy, your immune system realizes, "oh no! there's Babesia here!" and tries to go after THAT instead of the Lyme.
Why does it do that? Because after the doxy, your levels of babesia parasite are now higher than your Lyme bacteria levels, and the immune system will prioritize which intruders need killing. You are now using the antibiotic AND your immune system to kill the bugs.
And then after a few months of that, you get your Babesia levels down as well and are about to switch meds again, only to realize that bartonella was hiding out somewhere (!!), because after getting the lyme levels down, and then getting the babesia levels down, the bartonella made the mistake of thinking it was safe to come out and show itself, but the immune system now recognizes THAT as your primary problem and tries to attack it... So you get on a bart-specific antibitoic for a few months.
And you keep on doing this, attacking one pathogen at a time, getting the levels down to where you can use your own immune system in addition to the antibiotic to help fight off whatever bug is dominant, and eventually you get the same--often better--results than someone whose doctor bombarded their system with nine antibiotics at a time.
Because the immune system cannot prioritize what to kill if it's trying to attack everything at the same time: it just gets overwhelmed and this can lead to treatment failure.
posted
I have to agree with elizabeth on this. I have found I have to change it up every 2 to 3 weeks.
My latest protocol will be as follows.
Week 1 and 2
Ceftin, Mino, Rifampin, Levaquin, Art
Week 3 and 4
Ceftin, Bactrim, Zithro, Malarone, Art
Week 5 and 6
Ceftin, Levaquin, Bactrim, Flagyl, Art
Week 7 and 8
Zithro, Mino, Rifampin, Art
I will try this and maybe prolong each treatment over the 2 weeks if it still has legs.
I start getting worse if I stay of levaquin more than 2 or 3 weeks.
I will tell you if this works for me.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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METALLlC BLUE
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Member # 6628
posted
No, I don't believe so. I feel that patients actually move too fast thru trying different antibiotics and that's why they don't see results.
I believe the case gets complicated when multiple infections are involved though.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
nefferdun
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Member # 20157
posted
Thanks so much for your responses. I feel your doctor may be on to something Elizabeth.
Over the last year my lyme symptoms have been so under cover I considered myself cured of lyme but just battling bartonella. Suddenly my treatment for bart went downhill AND the lyme symptoms came back to the surface.
Lately with bartonella I developed burning shins, cramps, headaches, hot flashes and need to urinate a lot. I was almost symptom free for a couple of months. With lyme I developed tingling sensations, stabbing needle like pains, stiff joints. I did not have any lyme symptoms for nearly a year.
One of these infections also causes muscle twitching and increased memory problems, emotional and mental decline. This is what really concerns me the most - kind of sends me into a panic really as I have been "there" and it is so hard to return.
I have some indications of babesia - my eyes are very irritated, no stamina and air hunger now and then.
I was taking Bactrim DS and Zithro since Feb. I threw in artimesinin for the possibility of babs. I pulsed tindamax twice a week. This protocol would be help somewhat with all the infections but the blood form of Bb for which I needed doxy ro mino etc. Obviously this protocol just isn't working any more.
I wish I could use Levaquin but it gave me tendonitis so I am afraid of that whole family of drugs.
I have to get together a better treatment plan to present to the general practioner who treats me. Last time I was in there he gave me enough bactrim zithro to last a year as he is so ignorant he has no idea how to treat this. He told me to take it for the rest of my life if necessary and just come in for a liver test once or twice a year "if you feel like it".
I left feeling completely overwhelmed and depressed. With brain fog and memory failing so miserably, I have to go over and over drugs trying to figure things out for myself.
So your doctor baisically rotates the treatment for each infection rather than trying to attach them all at once. I am not sure it is a good idea for me to take 9 abx all at one time when the doctor I use has no interest in making sure I am ok. His nurse rolled his eyes when I wanted to get the fry lab photo of organisms and has not ordered it for me saying it is too expensive - ridiculous as I pay the bill, my insurance covering nothing.
People chime in I need to go to an LLMD, which I have done at tremendous cost as it requires long distance travel. I also tried a LLND. They want to see you every three months and when something goes wrong, they take a week to call back, don't listen, make serious mistakes (my muscle pain became tendonitis and I was not taking enough magnesium or any vitamin c).
Sorry for the rant.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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quote:Originally posted by nefferdun: One of these infections also causes muscle twitching and increased memory problems, emotional and mental decline. This is what really concerns me the most - kind of sends me into a panic really as I have been "there" and it is so hard to return.
I can understand your confusion, there! Im pretty sure it's bartonella that causes those, as it makes the nervous system highly aggitated; but of course Lyme can cause everything, huh.
After having to go off of my antibiotics for the past few months, all my symptoms are returning as well; it's like you know what's about to happen but you can't do anything to stop it because of all the troubles with failing treatment.
And yes, that's what he's doing...or at least, what he'll be doing from now on! Again, it was unintentional that I ended up on one antibiotic at a time (from Doxy to Ceftin to Amoxil and back to Doxy) because a year ago that wasn't what he did; he was more of a Burrascano-guidelines treater, which suggets multiple abx at once.
We originally started on Doxy because it treats multiple infections and was a great first choice to see if I would herx. I did, but then I got so much better that I had stopped herxing. Being too wary of taking both Doxy AND Ceftin together, he put me on only Ceftin...and thank God he made that decision, because that's when I had the herx from hell and ended up in the ER. (This happened ten days after switching to Ceftin, and I believe it was so severe due to a combination of my "Lyme flare week" coinciding with the day of one of my bart flares; I've since been hospitalized again with the same combination of circumstances--a bart flare occuring during my lyme week. Talk about a terrible herx!)
After being off of doxy and on the other abx for a month, my bartonella infection exploded and got very, very angry...but that was good! Because when I went back on the doxycycline (and bart has a terrible time trying to become resistant to doxy, bwahaha), I experienced a great amount of improvement!
So when I came to him with "so this is what happened," that's why he thinks that I unintentionally proved this new theory that's been circulating.
Ironically, it was Ceftin that Dr. Burrascano went on and off repeatedly, himself. It's a very potent attacker of Lyme!
Posts: 161 | From Southern United States | Registered: Sep 2009
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posted
I have never done Ceftin and have not done a cell wall drug in over a year so I am quite hopeful of adding that in as my rock for lyme.
I have no doubt in my mind that switching up intercell drugs is the way to go. I tried doing the standard combos over 2 months. It used to work fine in the beginning but since the lyme load has been beaten back the co-infections become more dominant, They are faster growing and need a much more tailored dynamic approach.
For me its been titt for tatt the last year between bart and lyme. I am hoping switching from combo to a babs combo when its needed whilst keeping the basic principles of one cell wall and 2 intercell rugs for the lyme will bare fruit eventually.
I tried to ignore babesia before and it just bought the whole house of cards crashing down.
I told me LLMD via email in detail how much I have been switching it up and why, his response at hour phone consult was "you really know what you are doing, nice work."
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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nefferdun
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posted
NMN, my GP tells me if he ever comes across another patient with lyme I will be the first one he consults with. More than likely he has come across a hundred patients with lyme and sent them away with a medical marijuana card rather than a diagnosis. I don't feel so flattered by that kind of complement. I feel all alone which I am.
Ceftin - I remember reading how Burrascano and the author of Cure Unknown both cured themselves with it. Also it comes to mind that they were off abx and allowed the disease to get completely out of control before taking it again so maybe this confirms taking breaks and then hitting it again is the way to do it - rather than just poking a stick at it all the time.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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quote:Originally posted by nefferdun: ...so maybe this confirms taking breaks and then hitting it again is the way to do it - rather than just poking a stick at it all the time.
Hahaha. Nothing really to add but that analogy made me laugh! Posts: 161 | From Southern United States | Registered: Sep 2009
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BoxerMom
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posted
Nefferdun - I'm sorry you're floundering with a pot doctor, but you are hilarious!
I changed my protocol every 4 weeks for the first year, when I was highly infected. Now, in year three, I change every 8 weeks. I feel my immune system is beginning to pick up the slack, so the meds "last" longer.
If you can figure it out, hit the infection that shows the most symptoms. Hit it with at least two drugs.
Bart is the fastest replicator, so you need to work on it until the population is way down, or you will relapse.
If you have Babesia duncani, you have to work on that one until you are asymptomatic. B. duncani is a huge challenge.
My doc does not treat Babs and Bart at the same time, because the best drugs are so hard on the liver. You can't combine them safely.
She does treat Babs/Lyme and Bart/Lyme. And parasites/Lyme.
I think her approach works well. You always hit Lyme, which is good because it's such a quick-change artist.
I spent a whole year on Babs/Lyme. Worth it! I've had one small relapse, but I hit it with herbs and the symptoms went away.
Then about a year on Bart/Lyme. Then 6 months on parasites/Lyme. Now I'm back to Bart/Lyme. I usually take 3 antibiotics and 1 antifungal. I always take herbs because I think they add to the effectiveness of the antibiotics and offer organ protection.
I can't believe you self-treat with a pot doctor. But, if need be, I would do the same.
Also, in year three I added the Burrascano exercise program. I cannot say enough about how this is building my immune system. Wow! Some of my best herxes are after a workout.
I wasnt blowing my own trumpet by the way I was just trying to make a point, and yes it does make me feel I am on my own again but what can you do.
We all have to be our own experts it seems. I would rather someone else carried the burden of treatment.
Its a lot easier to stay on 3 or 4 drugs for 2 months rather that have a stockpile of 7 or 8 drugs in the cupboard.
It good be a lot worse. You could have a doc that does not believe in lyme and patronizes you and refuses to help. Thats what most of us get. I spent the guts of 12,000 on drugs the year I was without a GP.
Boxermom, I ont know where I would be without the gym, it kept me sane through it all. I still workout an hour every second day and yes I do herx in the evening of my workout days. Especially the days when I cook myself in the sauna.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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nefferdun
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Member # 20157
posted
That settles it, I am joining the gym this winter! Boy do I ever hate workouts but maybe I can get into a class with regular sessions as people doing exercise together is more motivating than doing it alone.
I added amoxy yesterday and also a week of tindamax. I don't know what is happening but I am experiencing a lot of symptoms, including ones I never had before. I am losing my voice which I don't believe would be a herx and I have a lump behind my ear that hurts when pressed. So strange.
NMN We have to be proactive and awarel with this which is hard when you are so sick you can hardly think much of the time. If this GP did not prescribe the abx, then I would just get it online.
I could and should travel to an LLMD but I can't figure out which one. I did this once, it was very expensive and I was not helped, so I am reluctant to do it again unless I am certain it is the right doctor for me.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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BoxerMom
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Nefferdun - That bump concerns me. It could be a swollen lymph node, but others have suggested that "hurty bumps" are indicative of parasites.
nefferdun
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posted
I don't know what it is but I have not treated for parasites. I have really horrible diarrhea today as well, so I can't take the invermetrin I have been thinking about to be safe.
Bartonella causes hard nodules under the skin but this is against my skull. I am also losing my voice more and had some terrible cramps this morning
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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BoxerMom
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posted
Let us know what happens with the antiparasitics. Many of us have taken them and will recognize die-off symptoms.
posted
Sounds like an immune system reaction to me, neff. Couldn't hurt to see your regular doctor about it, though, if it's possible you could have gotten a viral infection? Hard to believe it could be anything bacterial with all the abx you're on, lol!
Hang in there, especially if it's herxing. Herxing is good, herxing is good! Posts: 161 | From Southern United States | Registered: Sep 2009
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nefferdun
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I think I may have picked up something in addition to the bacteria, like a virus. I am pretty sick today with a headache that won't go away and weakness. I was driving and had to turn around and come home. I had a moment where I did not know where I was and thought I was miles away somewhere else. When I passed a spot I knew, I realized how sick I was and turned around.
I don't understand how I could go from 90% to less than 50% (today) and it is a herx reaction when I was doing so well for months.
Yesterday I had the worst diarrhea I have ever had in my life, like water. I am afraid to consider taking anything that could affect my intestines any more like ivermectrin. I quit the augmentin to see if that might be it.
Thanks for your help.
I researching LLMD's, locations, protocols etc to figure out who to make an appointment with as I cannot make decisions from this point.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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