Like a few others, I am interested in using penicillin and/or amoxicillin to fight my Lyme dx.
I have NEVER taken ANY of the penicillin family drugs before.
Can anyone share 'anectdotal/experienced' advice in using penicillin or can you cite any studies and recommended doses/duration etc.
I am plagued with almost all neuro symptoms (neuropathy in feet/hand/spine, tinnitus, twitching, insomnia). Had 12 bands at Igenex, but overall negative.
I did a short trial (6 weeks) of IV rocephin last summer and even shorter trial of orals which didn't help, perhaps made things a little worse.
BTW, I DO have an open-minded doctor to consult in this, but am looking to hear from others who've had experience with this class of abx.
Regards, MBB3
Posts: 247 | From The Country | Registered: Oct 2007
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posted
I am VERY interested in this too, if you read my other posts. UP for the more experienced people.
I had a doctor tell me that huge doses of Vanomycin (spelling) works really good on Lyme. Can someone confirm this or what this bs? I need to know what penicilin to buy and what abx to buy. What pharms can I get these from because I'm not sure that the doc that I have is going to be on board - he's going to send me to an ID and that is a complete NO GO. Sorry to hijack your post, I just have a lot of interest in it.
Posts: 63 | From Hell - Or at least it feels like it, Oh, I mean Tampa, FL. OOOps! :D | Registered: May 2009
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posted
I have used Ampicilin IV with great results early on
Posts: 8 | From NE | Registered: Jan 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I'll be interested to see what responses you get beause my LLMD just gave me a script for Amoxyl to see if it knocks out my neuro issues.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Vermont_Lymie
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Member # 9780
posted
In my experience, amoxicillin should be high dose in order to best reach the neuro symptoms. I took high dose amoxy for almost a year, and it helped; so is ceftin.
Please do a search here under medical for high dose amoxy, and you can read about experiences.
Posts: 2557 | From home | Registered: Aug 2006
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
After the standard 2 weeks of Doxy... Amoxy was my staple ABX for 7 months. It was slowly increased from 1500mg per day to over 6000mg.
It did help for a time, but when I began to slowly slip backwards... and as I learned more about TBD treatment options...
I opted for a more aggressive combination therapy. That was 6 years ago.
I have also been on IM Bicillin LA for a time. And this form for me is one of the most effective. That was 3 years ago.
I recently tried to restart Amoxy because I do know the 'cillins' most certainly have their place in our treatment arsenal. However, I can no longer tolerate even a 500mg dose. That was 2 months ago.
So, then I tried Penicillin V at 500mg as an alternative. Again, it just did not agree with my digestive tract, and I had to discontinue this one as well... 3 weeks ago.
I suppose my case is sort of unique in that I have been at this semi-longterm... and I really can't take some things now that I once was able to handle in large doses. Not that it was easy then... but the response was never as drastic as it is now.
The only reason I persist in my pursuit of a 'cillin' is because it IS very valuable for treating certain conditions. Although the only way for anyone to know if it will be valuable to them, is just to try it and see.
Good luck, M
Posts: 7052 | From Colorado | Registered: Mar 2003
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Hoosiers51
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posted
I don't hear of LLMD's using Penicillin, the drug (not the "class") very often, so I would say, go with Amoxicillin.
Some people take doses as high as 6,000-10,000 mg total per day. This should obviously be built up to very slowly. Not many LLMD's even will prescribe those doses, but it has been done, with success.
It depends on the person, how much you can tolerate.
Or some people will do much lower doses than that, like 3,000 mg daily. In those cases, often it will be put with Probenecid, which helps it stay in the system better.
When it's not with Probenecid at least (dunno if this changes with Probenecid), you need to split your daily dose in half or in thirds, and take it every 12 or 8 hours, respectively.
Some people also do really well on Bicillin, which is an intermuscular injection.
Posts: 4590 | From Midwest | Registered: Jun 2008
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btmb03
Unregistered
posted
Many LLMD's prefer to start pts on another kind of beta-lactam such as Ceftin or Omnicef which some pts on this board have had good results with.
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Amox is way better than penicillin but it has to be in high doses. You can go as high as 18,000 mgs. That is not a typo. Also, you have to use a macrolide and a cyst bust along with it, to get the full benefit.
As far as IV, I found IV rocephin the least useful, but many have found it effective. Not only did it not produce very good results for me but why risk your gallbladder when there are so many other options?
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
You can always go to the ILADS website (ILADS.org) and download their guidelines for medicine doses.
Your doctor might prefer this anyway, since the guidelines are written by doctors that treat lyme, and they are part of the medical guideline clearinghouse.
Also very helpful at the ILADS site are Dr. Burrascano treatment guidelines and hints
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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[QUOTE] As far as IV, I found IV rocephin the least useful, but many have found it effective. Not only did it not produce very good results for me but why risk your gallbladder when there are so many other options?[/QUOTE Do you ,in your experience, find IV more useful at all?
From what I read IV look like most efficient delivery mechanism, -so you reach highest concentration possible (unreachable with orals or IM) . Downside of course is the very costly setup (both logistically and $$$)
As of rocephin seems it fits great in most protocols as powerful "general abx" plus it might have some anti inflammatory properties.
Also doxy seems effective in oral form as well as macrolides, so to me it looks like abx of different group is natural choice for IV (which leaves either bicillin ,either rocephin - if we exclude quinolones). Rocephin considered much more advanced than bicillin
Are there other good choices?
Posts: 856 | From MA | Registered: Jul 2009
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posted
I'm taking amoxy but am also taking probenecid to increase the potency of the amox. It is really wiping me out. So fatigued. I hope that means it's working.
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Coltman, IV is the best delivery system for many reasons but mono therapy is not the best in any case. So even with IV one would still be on orals and a cyst buster.
IM Bicilian shots are also very effective. There are many choices of IV ABX besides rocephin, such as claforen, zithromax, doxy, vanyco, primaxin,Tygacil, levoquin and so many more. But Lyme does not have a one size fits all protocol.
Each person will run thru many different combos of ABX during the years if they have a very difficult late stage case, not to mention malaria meds if they have babesia.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Melanie Reber
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"Each person will run thru many different combos of ABX during the years if they have a very difficult late stage case, not to mention malaria meds if they have babesia."
Yes, this is correct. I was also on IV Rocephin, IV Cleocin, IV Zithromax and IV Levaquin. Plus numerous orals in many different combinations.
It is all about trial and error... and trial again.
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
I just started amoxycillin (2000 per day) along with biaxin (1000 per day). The LLMD doc listened carefully when I told him that I had improved dramatically some years ago when I was hospitalized for septicemia and given IV vancomycin and naphcillin 2xday for 6 weeks.
It was amazing how improved I was. I had been bedridden for years, on oxygen, etc. Suddenly I could walk for blocks, did not need my wheelchair except for long hikes. My speech returned to normal and I could read again!
I did have a dramatic reaction in the hospital. I had horrendous diaharrea, dripped sweat, had a rash all over me, trembled constantly. The docs then had no idea what was going on. I lost 70 pounds in 6 weeks! They said it was "a miracle" that I walked out of the hospital!
My LLMD said that I had been herxing big time. He thinks that I am getting worse because I need to be back on the abx. He chose these two for me because of my "success" in the hospital. Maybe they are related to the vanco and naphcillin.
He did say that he is prepared to put in a central line if I need long term IV antibiotics. I sure hope that I don't, but I want my speech, energy, etc. to return and my pain to depart!
Let's keep in touch so we know what is and is not working. We are all different so we must remember that.
I am so glad to find this place. I am learning so much! Thanks everybody!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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