I have been off 3 and a half weeks. Quit because I was feeling bad. I was not ssymptom free by any strech of the imagination.
At first I felt better within a few days..... then about 2 weeks after quitting felt worse ...... rode that wave and now I am feeling better again ..... yes I have symptoms and my achiness is really bad some days but my brain seems better ..... ok maybe not totally but at least I don't want to jump.
I figured I'd get back on after 4 weeks off. Well Thursady will be 4 weeks and I don't wanna get back on. Supposed to start back with Mino ( which I was previously on) then add Rifampin (a new drug for me)in a few days.
So like what if I just stayed off? would I relapse totally? Seems to me the cycle of feeling initially better thn worse and now better means my immune system is kicking in .......... is this just wishful thinking? Would it be really stupid to just quit ABX at this point and see what happens?
If I had jumped right back on when I felt the symptoms coming back I would not have experienced the good time I am having now.
What ya'll oldtimers/researchers ( I didn't say you were old!) think?
Wanting to stay off the abx if its realistic..........
robi
Posted by bpeck (Member # 3235) on :
Hi Robi: You know what I think!.
Lyme is slow replicating. It can't be killed as fast as gram positive fast replicating bacteria anyway.
Although I think Lyme treatment needs to be long term (sometimes very long term) I don't think it's necessary to be on abx continually, i.e.every day for months at a time.
None of the antibiotics we take for Lyme were designed to be taken at the doses we take them for the length of time we take them. And many of them have suppressive mechanisms besides being antibacterial. I always went off antibiotics when I felt 'toxic' and waited, sometimes extended periods of time before resuming.
My goal was to kill as much Lyme as I could, without extended collateral damage to my body from constant antibiotics.
And I do beleive that the immune system is the 'big gun' so, IMO and in my case, taking breaks from abx did not set me back. I think abx work better if the immune stsrem is robust enough to assist.
Talk about this approach with your Doc. Ask him his opinion - and if it differs from your - when then you'll have to decide which line of thinking you want to follow.
I know, it's very difficult to decide. Good luck. Barb
Posted by hiker53 (Member # 6046) on :
After I ditched antibiotics I tried rife. Felt it helped. Then I added the salt/vitamin C protocol. I think just the salt/C protocol works by itself, although I still rife every few weeks
The salt/C protocol does give a herx and puts you on an emotional roller coaster ride for a little while. But, since going off antibiotics in midMay and starting rife in June and the salt protocol in August, I rarely use my walking stick and I work fulltime. I still get periods of fatigue, but am much improved. Plus I have gotten rid of the nasty systemic yeast the antitbiotics caused.
E-mail me if you have questions about the salt protocol or rife. Rife does call for an investment of money, but salt/C is cheap! Hiker
Posted by karatelady (Member # 7854) on :
Robi,
How long were you on ABx if I may ask.
I'm not an "old timer" with Lyme --- had it for years and years but have only been on ABx for 2 months and its about to kill me as far as herxing and depression.
Anyway, I just wanted to say don't forget about Samento. It supposed to help build up the immune system so you can fight the lyme.
I keep thinking I want to get off these ABx's and do something more natural like Rife, or the Salt and Vit. C but everyone I talk to says stay on the ABx for awhile. That's why I was wondering how long you were on it.
Hiker: You said you ditched them too. How long were you on them before quitting? I like Barb's idea.
Sandy
Posted by lifeline (Member # 3445) on :
One thing for sure....never let your guard down.
I've been off abx for a year now, but I never think "cured", because I still have symptoms.
For me, going an alternative route seemed sensible, and I'm glad I did. I just bought a rife and just only started using it, but I can see it will be the way to go for me.
Also, tons of supplements keep things somewhat at bay, exercise, eating right, all the things we know to do.
I will always retain my LLMD, probably for life, because he knows my history and he got me this far, and I'm truly grateful. Was on abx for l8 months.
You will know what is best for you, and I wish you all the best of health.
lifeline
P.S. I did just what you are wondering...I just quit abx to see what would happen...and I'm functioning just fine. For me, it was a good thing.
Posted by liz28 (Member # 4946) on :
Robi, I'm very curious to see how the rifampin affects your symptoms. Ever since I abruptly went into remission about two weeks ago, I've been sold on the idea that Lyme and bartonella can have interchangeable symptoms. You've been on too many abx by now to just have a stubborn case of Lyme. There has to be another explanation.
Posted by hiker53 (Member # 6046) on :
Sandy,
I was on antibiotics for 9 months. It took 1 1/2 years to diagnose the lyme before I was put on antibiotics. Hiker
Posted by Rubicon (Member # 7919) on :
what is sameto and what does it do? thanks!!!!
Posted by robi (Member # 5547) on :
Well, all of these responses are great!
Barb .... yes I have thought alot about what you said. I like the idea of attacking and backing off before the next attack.
I am going to tal to my doc in October about this idea since I have had what I consider to be such a "successful" break.
Hiker I have been reading a lot of what you post with great interest. I think I am heading towards rife and Salt/c ... just need t try a few more ABX before I stop... I want to go the distance with what I started.
Karate Lady I started ABX in April of 2004. Was on thewhole time with only a few days off here and there. Maybe a total of 5 or days off in 17 months. I was 6 months between bite and diagnosis. I have severla co infections and mycoplasma also. Hering is bad and the depression is worse. Take a short break if you need to ( call your doc) but staying on long term has brought some improvement. email me if you'd like.
LifeLine I agree .we must maintain a very healthy lifestyle ...and I do ........ I drive a lot of people crazy with food, exercise, etc but I hhave to do these to maintain myself. How long did you have Lyme andd how ong before Diagnosis ........ I think this has a great impact on recovery.
Liz28 I too am curious about the Rifampin........ I am going to do it.I think I have to try a few more importnat ABX befor I wean myself off .......... ifampin is one and after that I thughI might try Bicillin LA..... I am gonna be buggin you a lot once I start that Rifampin ........... ope your work load is lightening up.
Rubicon you can search on Lymenet and on google to read about Samento ......... a lot of floks say it is very effective. I will take it when I am off ABX but have not done it yet.
Thanks so much for these thought out replies, I love you guys! robi
Posted by karatelady (Member # 7854) on :
Samento (Cat's Claw liquid) is a purified natural substance from Peru, is supposed to be a powerful immune booster and also has antibiotic properties.
I can't say from personal experience because I've only started taking it and you have to work up very slowly because of herxing.
From reading up on it some people say it works wonders for their lyme and others say it did nothing for them.
Posted by lifeline (Member # 3445) on :
Hi Robi,
I was bitten in July of 2002, diagnosed 6-7 months later after going to 5 other doctors who had no idea what Lyme was.
Found Dr. C from someone on Lymenet, and he tested me...positive on WB for Lyme, didn't test for any co-infections, but treats for all of them.
Was treated for a total of 18 months with numerous abx. Quit abx a year ago in August of 2004. So, I've had Lyme for three years now, but doing well. I'm hoping Rife will keep things at bay, so far, so good.
lifeline
Posted by Lymetoo (Member # 743) on :
I would make sure you're cleared of yeast and just keep an eye on things. If the Lyme comes back, you'll know!
Posted by bpeck (Member # 3235) on :
In regards to the cats claw:
In the past, I've taken Cat's claw, and Devil's Claw (Samento and Harpagophytum procumbens respectively) and both are anti-inflammatory.
Both these herbs are touted to be anti-viral, antibacteria, anti-oxidant and anti-inflammatory.
I gave them both a pretty good run, on separate occassions. They did make me feel better, but in my case they did not work as well as WobenzymeN for inflammation, nor as well as Lauricidin (or Coconut oil) for just a general subjective improvement.
But depending on your inflammation level, either of those herbs may reduce the inflammation enough to allow the immune system to actually get to something and kill it... I never felt like that on either one though. Some people report herxing on these herbs (I never did).
Barb
Posted by robi (Member # 5547) on :
Life........... your story sounds like mine as far as bite todiagnosis to treatment time.
I was bit in Nov 2003 dx in April 2004. Treatment from April 2004 until 3 weeks ago.
I am gonna try the rifampin and maybe bicillin at some point.
Were you symptom free when you quit abx??
robi
Posted by lifeline (Member # 3445) on :
Robi,
Rifampin really helped me a lot, so I feel like I must have had Bart even though I was never tested for any co-infections. Took lots of different abx, no IV abx.
I was not totally symptom-free when I stopped, still am not, but working on it through alternative ways. I feel the Lyme load is down enough to do that, and I function just fine. My symptoms have not increased.
I go to my LLMD every 6 months...just in case...
Just got my Rife machine, so have only done that three times but feel already that it will be my answer to a somewhat normal future. Great feeling!
You will know when it feels right for you and what you need to do next.
My best to you,
lifeline
Posted by troutscout (Member # 3121) on :
I'm not sure if I qualify as Yoda, and old-timer, or a researcher...
Not for nothing, I was weened off abx and put on Cat's Claw last November. Prima Una de Gato by Allergy Research. I know it's another pill not covered by insurance... But it's potent stuff. I herxed off 1/2 capsule within thirty minutes of first dose. It reduces inflammation, regulates blood sugar, blood pressure, and modulates immune system.
Something to think about before you go dumping toxins into yourself again. Posted by robi (Member # 5547) on :
Well ........ if I had to place you in on of those groups I would say "old-timer." Now, I am not calling you old just because you just turned **&^#$%@ . Just that I feel you are experienced.
Thanks for the info ....... it is where I am headed... if not this round then at least after the next try on ABX.
robi
Posted by jbgoth (Member # 5567) on :
Robi,
It has been 10 months since i quit ABX. Im doing better than ever.
I have gotten my yeast under control, started to exercise and have been using rife.
I am all for giving your body a break.
I probably had lyme for 15 years and i never knew it. I had a few symptoms back then and no one ever checked me for lyme. I think my immune system took care of it.
So, i am hoping that my immune system will take care of it again.
I am making my body very strong now with diet and supplements. I have never eaten healthier in my entire life.
I believe you can go off of ABX and still get well.
Let us know how you are doing.
Jordan
Posted by trails (Member # 1620) on :
You ask the million dollar question, you do.
But there is not a million dollar answer. Just a million answers for you.
(haha, you gotta read that with your YODA voice)
It just depends on what YOU want to do. I say take breaks from ABX when you feel like you NEED to. You are in it for the long haul, and you need to have breaks. But others would say NO NO NO.
Thing is, nobody actually KNOWS. I stopped abx in 2001 after 8 wks IV and 6 months of orals. I was not well, but felt it was "time." I improved tremendously OFF the ABX for a year and then had stable no symptoms for a few more years until my relapse this past spring. What from? no one knows yet. BUt stopping the ABX was not brought up (by LLMDs) as a possible reason for relapse. Only that I never treated the co's properly and rocephin is a relapser drug.
Take care of ANY yeast while off ABX....be doing the probioitcs and nystantin and all that, so that when you're ready to go back, your tummy will be ready too.
Hope my opion helps, I do. Trails Posted by robi (Member # 5547) on :
Heyyyyyyy Trails ...... yes it IS the $1,000,000,000 question. I am still not wanting to restart and it has been 29 days now.
I feel like I have to go back on.........t least for a while with rifampn as I don't think I kicked the bartonella.
I have been taking los of probiotics all along. Had a CDSA test from Great SMokies La and should have the results in 2 weks that will tell me my candida status. Maybe I can stay of until them ....
Take care, robi
Posted by troutscout (Member # 3121) on :
Robi,
Quick question...what makes you think....bart?
Trout Posted by robi (Member # 5547) on :
Trout...... I am not kicking this after 16 months of continous heavy duty ABX. I did 2 monthd of levaquin early on but that is the only bart TX I have done. I test + for bart and also had a noncaseating granuloma in a lymph node .... thats an indication of bart.
Why do you ask? Do you have bart?
robi
Posted by liz28 (Member # 4946) on :
Omigod, you tested positive for bart?!? I'm going to fly down to your house right now and put rifampin in your espresso! I tried levaquin, too, and the bart came back right away.
By the way, jogged three miles yesterday for the first time in five years. So far, no relapse at all.
Posted by robi (Member # 5547) on :
LOL .... did I forget to mention that??
Tested positive in July 2004 at Jemsek Clinic .... although I don't go there.
Espresso? Wishin'!!!
3 miles right off? You didn't even start off with a mile or 2 and work up?
robi
Posted by lymeinhell (Member # 4622) on :
I just found my cane so I could get back to the computer....
Do what ya gotta do.
(and remember to buy a new toilet seat, because Rifampin STAINS everything yellowy orange ).
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I tried levaquin, too, and the bart came back right away.![[bonk]](graemlins/bonk.gif)
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