Topic: Experiences/stories about High dose Amoxicillin for Lyme?
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Hi....
My LLMD believes in treating Lyme with VERY high doses of Amoxicillin.
He says that it must be high so it can cross the blood-brain barrier, or else it won't do much for neuro symptoms.
It does help me though, but I feel like I am now "plateau-ing"....i.e., no longer improving, and still have a ways to go.
I was wondering....has anyone else done this treatment or have stories about it? I just never see posts about it, so I am feeling like the only one on it!
Thanks!
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
My first Lyme treatment was 6000 mg of amoxic. I feel a bit better but still have a long ways to go.
I did not herx during the entire 60 days. If I did, then it was very mild
My LLMD thought he would switch it up and now I am on 400 mg of Doxy. He thought it was a good idea to switch as doxy also attacks bartonella
Lyme treatments are a long haul.
What I do is track my top 10 symtoms on a weekly basis. My scale is from 1 to 10 . With Lyme you have to celebrate your improvements , ie reduction of symptoms. This documentation is also helpful for LLMD
Hang in there, hi dosage is effective. However, switching up every 2 to 3 months is effective per alot of litature that I have read
Good luck
-------------------- Dx 3/2008 Pos. WB and Bart- igenex Levequin 500 mg March 2008 Amox 6000 mg - May 2008 Doxy 400 mg - June - oct Biaxin and Flagly 1000 each, oct-dec Zitro, Malarone and Flagly Jan - feb Remission for 6 months Relapse Sept 2009 zithro/flagyl Posts: 130 | From canada | Registered: Mar 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I was on high dose amoxy for one year. It was very helpful, but ultimately after one year, my doctor and I thought I could benefit from other treatments, like using IM bicillin and macrolides with plaquenil.
I was on very high doses, and it does cross the bbb. Be sure to take lots of probiotics frequently, it will help prevent any GI issues.
I have seen a few papers that say green tea extract can potentiate beta-lactams like penicillin (and amoxy I believe), so now I drink green tea when I have my bicillin shots. Best wishes.
Posts: 2557 | From home | Registered: Aug 2006
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posted
I was on 3000mg/day and improved, but then plateaued. Now I'm on IV Rocephin.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I was on 7500 mg per day for 5 months. I made progress on it, but it was a very hard drug for me. I took other things with it, including probenecid, which helps it to stay in the blood stream longer.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
that's how i got better 10 yrs ago. it took away my profound fatigue and severe "ball of the foot" pain.
i weighed 200 lbs and it took ten 875mg amox in the am and pm to make my blood tests show it was crossing the blood brain barrier
i also took 1000mg zith at the same time. it took me almost a year to build up to the dose...i was working and had to figure out probiotcs and antifungals enough so i could get the diarhea under control enough to work as a teacher(can't always "go" wwhen you need to)
after getting up to the full dose , i was on it a year. then a year of detox. i was 80% better---had had lyme a long time untreated. my joint pain was still a problem but i have bad gene and have been dealing with osteo-arthritis since.
lyme is still in me and gets more active when i am under stress...but that treatment kept me working, got me out of bed and gave me my life back.
i have never heard of anyone having so high a dose. my llmd was one of the "originals"-close to dr b...but not dr. b.
good luck.---also this was 10 yrs ago in northeast-i think the bugs are changing over time and i know different areas of country tend to have different strains and outcomes.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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How depressing that this is still the main thrust against Lyme disease.
I was on high-dose Amox for almost 1 year.
I took 18g/day.
It did precious little. I thought it did, cause I hoped it did. But it didn't. Nor did any other meds. All they did was to take the brunt off the symptoms. But they basically remained.
The real turn around for me was when I turned my back to western medicine. I took complete responsibility for my own health and simply started living according to high-level principles...such as eating healthy, exercising, detoxifying, adopting positive openminded attitude, spedning time in nature and generally try to involve myself in society and trying to make a difference.
IMO, our bodies have all the healing powers needed to irradicate almost any illness granted that we treat it properly and learn to listen to the signals from our body.
As long as we put our faith in pills we're in for trouble. But yes I know it's a hard one to swallow that your health is predominantly up to you yourself since we're been brain washed from birth to put faith in doctors and pills. But my dear friends it's such a flawed system because it doesn't take a holistic approach to healing.
Think about it. Basically all of our ailments today are new diseases that have popped up in the last 50 years. Now corelate that with our eathing and living habits and you'll see the link.
Go back to your roots and you'll probably be ok. Though you do need to detoxify cause that's one thing you can't avoid.
I'm not a doctor and all the above is IMO.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I feel a little better now that there are two people that took more than me! I take 5,000 mg in the morning and 5,000 mg at night. But I am a very small person.
My doc did do the blood tests to get it to its optimum level.
It is weird though; I feel like when I try to go off them, I slide backwards a little. The first symptom that shows up is I get very irritable, then tired. No one wants to take that many pills, but everyone around me suffers when I stop taking my Amox!
I am thus in a weird scenario---I feel like it is helping, so I don't want to go off it, but I am not completely in "remission", I am only at about 40%. So I feel like I do need to try something else.
But I have tried so many other antibiotics, and this is the only thing I have seen progress from besides Mepron/Zith for babesia!
The other problem is this: my insurance will no longer cover my LLMDs presciptions he writes, so I need to find a "local" doc to prescribe that! I pretty much know that won't happen!
Bicillin shots could be an option....but my doctor feels like it doesn't help the neuro symptoms as much.
Posts: 4590 | From Midwest | Registered: Jun 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i think it is important for people who get worse as soon as they stop abx to pulse for a while.
for me it was a year.
if you understand about abx putting the ketes into cyst form...them reproducing there...and then coming out stronger when the abx are taken away, then you can understand why pulsing is important
i know and agree all the eastern medicine stuff is important-but for me i needed abx in the beginning. before i got them i spent $10,000. on a year of alternative treatment and got worse.
we're all different-the bugs are different-it makes sense different tx will work with different people
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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quote:Originally posted by lpkayak: i know and agree all the eastern medicine stuff is important-but for me i needed abx in the beginning. before i got them i spent $10,000. on a year of alternative treatment and got worse. I'd like to see a show of hands who's been cured through pulsing. And before everyone starts raising their hand, I'd like to request that people try to be honest with themselves. So, for example, before raising your hand - wait a few weeks until the placebo effect has died off, - wait until all the excitement has settled down and you're thinking clearly again, and - wait 3-4 months after stopping treatment before you know for sure that the infection is so low that it is no longer impacting your life more than a cold or so.
we're all different-the bugs are different-it makes sense different tx will work with different people
Yes, if you pull Treatment X out of the box, yes.
But there is some common denominators amongst us all that need addressing no matter who you are. There things are: - detox, - drink sufficient clean water of average pH, - make sure you eat healthy and according to your nutritional type, - make sure you get sufficient sunshine and fresh air, - make sure you address any metabolic imbalances you may have, - get sufficient sleep.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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WildCondor
Unregistered
posted
I know an LLMD who uses like 16,000 mg of Amoxicillin per day and has had good success with it. You can measure your blood levels and use Bicillin and Auggmesntin to keep the dose high enough. Most i took was 12,000 mg/day. Good stuff.
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quote:Originally posted by WildCondor: I know an LLMD who uses like 16,000 mg of Amoxicillin per day and has had good success with it. You can measure your blood levels and use Bicillin and Auggmesntin to keep the dose high enough. Most i took was 12,000 mg/day. Good stuff.
And are you well today? Are you off drugs? Have you been fully functioning for more than 3 months?
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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WildCondor
Unregistered
posted
Yes...been off all antibiotics for 4 years now and doing well! You can all get better you just need aggressive medication. It took me 5+ years of treatment to get well.
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quote:Originally posted by WildCondor: Yes...been off all antibiotics for 4 years now and doing well! You can all get better you just need aggressive medication. It took me 5+ years of treatment to get well.
Fantastic!!
May I ask what kind of diet, lifestyle, exericise, etc you're on?
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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