Topic: All this stopping and starting of antibiotics from the LLMD's is this a concern?
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Hello,
I have been working with a LLMD off and on for about 4.5 years. I am now with a new one. I treat with antibiotics, and have tried other ways to treat, I need antibiotics.
I research and journal all I can, to hopefully get as well as I can one day, I like to see who is better, and what they did, and what worked, and how long before they relapse.
What I want to know is this? Did Dr B, the one who is retired, treat with pulse therapy, as in, taking Biaxin 2 days a week? or treating with Flagyl on the weekends?
What concerns me is this. I read on here about what people are doing with LLMD's and read that SOME take Biaxin 2 days a week, say on Monday and Wednesday, is this not a BAD thing? Does this
or will it not create antibiotic resistant lyme? I am not a LLMD, but I know my other LLMD never did this, he pulsed 5 on 2 off, the LLMD said that taking 2 days off the lyme would not become resistant to it, but not 3 days, just 2 days the LLMD said. Some of his patients did not do well with pulse therapy, others did much better
this way.
I would like to have seen Dr B but he is retired, so why are some taking Flagyl only two days a week and how on earth is that going to get at the Cystic form? Is this not creating antibiotic resistant lyme?
Also, this 10 day on 10 day off Clindamycin and Quinine treatment for Babesia, is this not a bad idea? Do the LLMD's know what they are doing with this? or are the people here Guinea Pigs?
I was STUNNED when I read this and thought I would bring it up for others to comment, I am not a LLMD, but I do know from reading that people die from antibiotic resistant strains many times.
I just thought I would check with others what they think, because I am not a LLMD or Dr.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
| IP: Logged |
posted
i pulsed rifampin in the beginning because i was going into such a herx i needed a break from the abx for a few days a week
but then i found that my symptoms were going away after a few days on it, so my LLMD said to just stay on it. i am tolerating it well
Posts: 615 | From maryland | Registered: Oct 2007
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I don't know. This whole antibiotic thing seems a bit suspicious to me.
Some people say they get well but then end up back on this message board saying that they relapsed.
If you take a particular drug for 4 years + & it doesn't or hasn't worked, wouldn't you think - "maybe this isn't for me?" or that it's just not working?
It just doesn't make much sense to me to take a serious drug like an antibiotic for longer & longer periods of time if it doesn't work.
They were never meant to be used continuously. I know some people will disagree but it just doesn't make sense to me.
If you've had Lyme for a long time & it's affecting the nervous system & the brain - how is taking abx going to stop it?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
tailz
Unregistered
posted
If I have resistances, I developed them when my LLMD had to stop my infusions because I was septic and my liver could not handle any more die-off. Once we stopped infusions for a month and then restarted, the antibiotic was no longer a miracle.
I wish I had just told him to keep infusing me, but I doubt he'd have done it with my liver values.
Same thing with mino and metronidazole. They were helping initially, but then they stopped. This has happened with artemisinin, too.
There is some truth in every theory doctors come up with, and yeah, antibiotic overuse does help to increase resistant strains of bacteria, but then again, so do cell phone signals, but we still dial away.
With my personal nightmare of being electrosensitive due to wireless technology, I can't say I worry too much about resistant strains of bacteria, because I don't think we're going to be battling bacteria too much longer. This is what I believe.
I look at my white-coated tongue in the mirror, the petechiae on my ankles, itch the skin on my knees in the tub, wipe my sweaty hands on my jeans - there's no way that Lyme and wireless technology can be ignored much longer.
We shouldn't be fighting bacteria in the first place. If we hadn't ruined the planet with our desire for technology (really money), we would live in harmony with even the spirochetes of this world.
IP: Logged |
I'm with you on this one. It's terribly confusing, and I do feel we are guinea pigs for the time being, until much more research is done.
The way my dr. described the theory behind is pulsing is a way of tricking the bugs to come out of hiding in the tissues, and then hitting them hard - off and on like this. When the environment is constantly hostile, the bugs in theory sequester themselves into deeper tissues. But I think all of this is based on the best theories out there, and based on evidence based/experiencial medicine.
It's so hard for all of us and are dr's to be so in the dark in terms of real knowledge!
We go back to old fashioned medicine really -
Posts: 364 | From California | Registered: Sep 2005
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Health,
I don't know lyme really becomes resistant. I think sometimes it is that one disease starts to get beaten down and another can decide to take the opportunity to come out and play.
This has been the case for me. I think everytime i started to beat the lyme down babs started taking over so i plateaued or got sicker cuz the med i was on wasn't hitting the babs too.
This is just my opinion of course.
Also I have been on abx more than once... even ones i plateaued on at one time ...did help when i went on them later... so i can say i havent seen a resistance form in my situation.
I also think that everyone has to decide how much/long abx is right for them.
Someone mentioned why keep taking abx if it is already effecting your brain/nervous system etc.
well for me if i go off them for even a few days I get much much much sicker. And until the medical community aknowledges chronic lyme and really invests itself in the seriousness of the disease this is my best option.
For me, the risks of long term abx and however frequently i switch them are far fewer and far more acceptable than the certain path the disease will take without the abx.
I also think some people have to pulse because of stomach issues and herx/problems detoxing issues.
like i said this is just my opion as a patient living with lyme (and babs).
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I prefer being on at least 2 at a time for 3 months and move one abx out and another in then do the same with the next abx in line.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
double post
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
quote:Originally posted by Anneke: The way my dr. described the theory behind is pulsing is a way of tricking the bugs to come out of hiding in the tissues, and then hitting them hard - off and on like this. When the environment is constantly hostile, the bugs in theory sequester themselves into deeper tissues.
Exactly. Especially with flagyl. I never pulsed with any abx for only 2 days a week though. Would have made sense to me to do that with flagyl, but we didnt' do it that way.
I did do the 10 day lyme/babesia treatment and it didn't seem to be a bad thing.
When I later switched to artemesinin and zith is when the babs finally got knocked out....but who knows if the 10 day thing is what really knocked out the majority of it?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic