disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I've been being treated for Lyme and Bart for about 6 or so months now. I've been hearing about the negative effects of long-term antibiotics such as antibiotic resistant staph infection, etc.
What is the likihood of this happening to us Lymies? And what kind of things can happen to people who take antibiotics for such a long time?
It kind of scares me as I went to a support group yesterday (which was AMAZING), and one of the people there said they almost died because they got an antibiotic resistant staph infection.
Just kind of worried about that and not sure what to look out for in that respect.
Any input would be appreciated.
Thanks,
Ashley
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Up
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
MRSA (the staph infection) is getting a LOT of press lately. The fact is most people who get it still get it in the hospital.
Yes, you can get it. But, no, it's not resistant to all abx, just the one type.
I really don't understand why MRSA is getting so much press .... it's always been around.
The thing with abx is that you have to respect them and use them when necessary ... I think they're necessary with Lyme Disease. And you want to stay on them long enough to get rid of the Lyme Disease .... undertreating is what's going to cause resistant bacteria .... but it will be resistant Lyme Disease, not resistant MRSA ... if you get MRSA it will be from someone else ....
Does that make sense?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i developed severe c. difficile because the docs didn't give me flagyl at the same time as antibiotics.
so now i've been told no more antibiotics.
long term antibiotics can be detrimental to your health, but if you know what you're doing and have an excellent doctor, it's the way to go.
herbs work for some, antibiotics for others. it's a guessing game really...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
hello- re: "undertreating is what's going to cause resistant bacteria .... but it will be resistant Lyme Disease, not resistant MRSA ..."
Are there really any studies about this?
I'm really beginning to doubt this long term abx treatment.
Some of you have done well with it but I still feel the same or worse then when I started about 9 months ago.
I'm sure there are risks involved with taking abx for extended periods of time other then killing all the "good" bacteria in your body.
I heard that AliMax (a garlic supplement) is good to get rid of MRSA.
I had a staph infection in my eye when I was 1 year old.
I got it from my mother who got it from the hospital.
I guess I lived through it. I don't remember...
I did have to have an operation on my eye back then, though.
Hospitals are very dirty places - lots of germs... best to avoid them if possible.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
My husband got MRSA in the hospital, not from me! And he has gotten it over & over and been hospitalized for it... He has bad diabetes...
Any funnily enough, neither of the kids nor I have ever gotten it FROM him!!! Thank goodness.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by sparkle7: Hospitals are very dirty places - lots of germs... best to avoid them if possible.
My support group meets at a hospital.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I had a nurse come to my home and put my pic line in for IV rocephin and she told me it's usually better to have it done in ones home than in a hospital where there is a chance of infection.
I would think some of the hospitals problems come from poor hygienics (sp) from staff and others that visit.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
i too doubt the efficacy-without-longterm-damage of extended antibiotic usage. very unpopular opinion on this board, i know. if it's something you're concerned about, disturbed, we have the same ILADS LLMD, and he is EXTREMELY well-versed in alternative protocols for lyme disease. i'm not on any abx at the moment - i will probably add them in the future, but i refuse to take them for months and months or years on end without breaks - which he is perfectly fine with.
one of the reasons i like him is that he seems to do what the patient is most comfortable with. he is super well-versed in both abx and alternative treatment for lyme & co, so you and he can pick & choose together.
anyway, i'm sure you could ask dr. g. he might have lots of ideas for you. and have him ART test you, if that's something you're open to!
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
first i would first like to say that this is just my OPINION as afellow lyme patient.
All Antibotics have POTENTIAL side effects like any other medicine (prescription or over the counter) and many natural pills/treatment.
They can cause c.diff, yeast infections, leaky gut. But I think under the care of a good llmd these things can be prevented or managed.
Now I think Picc lines carry additional risks like infection which is why I think IDSA seems to site IV abx studies when declaring long term treatment "too risky".
Maybe these risks would seem to great for some to continue abx.... but when I think about where I would be without the abx these risks are not that big to me.
Lyme can do many awful things to a person and to a person's life and I think if this was taken into consideration more drs would understand the need for long term treatment for some patients.
But I don't think most of them even have a text book understand of lyme disease. Meaning I don't think they even understand the potential quantity or quality of the symptoms a person with Lyme disease may expereince.
Much less do most of the drs even begin to understand the horrors that the patients with Lyme disease expereince with such a wide array of symptoms that can be layered one over another day in and out over long period of time.
I have been spared some of the horrible things that lyme can do to you. Some I have not.
I know without the abx my health will decline until I am in so much pain I can't walk, can barely hold a fork, can't stay awake through my own sentences.... I have been through this... I KNOW the expereince ... the thought of returning to this frightens me...
but the thought of returning to that horrible state is not what frightens me most.... the fact that this disease I have can do far worse to me... without abx I feel like I would just be completely at its mercy.
But like I said this is just my opinion and just my expereince and everyone should decide how/if to treat their lyme for themselves... As we all know, what works for one does not work for everyone.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by heiwalove: disturbed, we have the same ILADS LLMD, and he is EXTREMELY well-versed in alternative protocols for lyme disease. i'm not on any abx at the moment - i will probably add them in the future, but i refuse to take them for months and months or years on end without breaks - which he is perfectly fine with.
Thanks for the info! Yes, I like our doctor a ton. I will talk to him about this for sure next time we meet.
Thanks again, heiwalove.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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quote:Originally posted by sparkle7: hello- re: "undertreating is what's going to cause resistant bacteria .... but it will be resistant Lyme Disease, not resistant MRSA ..."
Are there really any studies about this?
When you treat a bacteria with abx, it leaves the resistant bacteria, which, by definition is the bacteria not killed by the abx .... the resistant bacteria was already there and just didn't get killed by the abx.
Hopefully, if you treat enough and at the same time build up your immune system, it will be strong enough to kill the bacteria left behind.
So, if you're thinking of stopping abx early, I would definately use some strong herbs.
I am assuming this is what you meant by your question .... .... I don't think you were asking if MRSA could be caused by treating Lyme long term.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
I guess it's a personal choice too. And depends on your doctor's view of the problem. I've seen people here losing their gall bladders because of iv rocephin, but also some lose g-bladder without it...
For me, I prefer the gentler way. I don't believe I can have a healthy immune system without having a healthy GI tract. I suffered for decades of GI problems, muuuch before lyme, so it's one of the last things I want to suffer again, now that it is working so well.
And now that I have lyme and know that my immune system's health depends on about 90% of a healthy GI tract.
Knowing that you can replace few species of bacteries that are dead with abx is a bit comforting though. But knowing that in fact, we have hundreds, if not thousands of species of friendly bacteries and other creatures there in the GI tract, to help us on digesting/ immune modulation etc, well, I still don't feel comfortable with the idea of getting months/ years long abx and kill 95% my allies and replacing about 2-3% only... I mean, not in numbers, but in different species.
But if I have to, I'll take abx, as I have done by bits, but not for very long. But this is me.
I find most herbs are much friendlier. I never got GI candida with them, and I take loads of them. I know some are strong and you can get your good bacteries killed to, but no herbal specialist I know thinks the killing is as drastic as with abx.
That's my view, of course. That's why I think it's a matter of personal choice (and doctor's choice too). Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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posted
It is a personal choice. Some of us simply cannot live without a long-term antibiotic regimen at this point, we have tried and it doesn't work whether due to strain, severity, history, genetics,... To anyone who has a satisfactory quality of life with treatment other than abx, more power to you.
Just want to add that not all abx are created equal when it comes to concerns about resistance. Tetracycline and penicillin for example have been around so long, a lot of bugs are already resistant to them. The abx used for Lyme are generally not the front-line of defense for emerging infections. It's when you get into using things like vancomycin for Lyme that resistance becomes a greater concern. (At least that's what I'm told by LLMD.)
Posts: 621 | From US | Registered: Jun 2006
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