Topic: Should we go on Maintence ABX after we feel much better?
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
One of my doctors thinks i should go on a maintence dose of abx like zith to help ensure I do not relapse.
I had had a huge relapse (well I would call it more of a backslide because i was not fully well or anything yet in 2008 after 8 years of being sick..)
I got the flu and all the progress I made which was slow but I was moving in the right direction. Well I fully relapsed to my worst state once again and that has been what I have been trying to climb out of since Jan 2008.
Well I do have a fear of it since it happened to me before and though I wonder if a dose a day of zithromax will really help or not??
What do you all think and have others been put on maintenece doses of abx for this reason?
thanks for anything you know on this subject
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littlebit27
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posted
I'm not even close to that place right now but my opinion for myself would be if the doctor thinks it will help and I am scared of a relapse I would do it in a heartbeat.
I would assume it could be a low dose (not sure about that). And if that was the case-without a doubt. And I would continue my pro-biotic and other supplements.
I think after this whole experience I will always take a pro-biotic-for the rest of my life.
Good luck with your decision. And sorry I couldn't offer REAL advice-just my opinion.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I would decide when the time comes. It sounds like you weren't completely well last time. I thought I'd always be on maintenance abx and always planned on it, and I am not on them.
When a patient only has symptoms during monthly flares, he only treats during the flares. That is another idea to consider when you get closer.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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glm1111
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posted
Spring,
Are you completely symptom free? If you are having any symptoms, I would definitely stay on a maintenance doseage. I would also consider doing some herbs and maybe a little salt/c since you have done that before, just to keep things in check.
Hope you are doing well,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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nefferdun
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Member # 20157
posted
I wonder the same thing. I wonder if pulsing the abx like some doctors prescribe would help me make the transition. The abx give me insomnia so it would be really nice to have a few nights of good sleep a week and it would also probably be very good for my health.
Zithro is not a very powerful drug when used alone, for any of the infections. If you are flaring once a month, it is probably lyme related and you could just pulse around that time. I don't know what to do about bartonella.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lightparfait
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Member # 22022
posted
When you are better, I suggest go on a maintenance detox!!!Get rid of the debris and chemicals in your body. That is what we did, and have not replapsed in almosta 2 years now...as toxins can give the same symptoms as lyme! As you will not knoiw if its lyme resurfacing or if its toxins unless you detox and get free, so you wont need abx to keep all those symptoms away forever.
Posts: 1009 | From NJ | Registered: Aug 2009
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glm1111
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posted
Ah, Good point lightparfait. I do a salt/c flush every morning to get rid of any toxins/dieoff from the day before and it works really well.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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The harder you work the luckier you get! Posts: 965 | From Nebraska Cornhuskers fan in Massachusetts | Registered: Dec 2007
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TerryK
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Member # 8552
posted
Have you had your CD57 measured? From what I've read, if it is low, you have a higher chance of relapse.
I'm not there yet but I've already been planning for when that day comes. Once I am in remission for a number of months, I'll cautiously graduate to herbals and rife to maintain.
Identifying and mitigating anything that affects the immune system negatively would also be important in my view.
As far as detox, I'll always need it because of my genetics so for me and some percentage of lyme patients, it will be a critical factor in staying well. In my opinion, everyone should be detoxing on a regular basis due to all the chemicals we are exposed to on a daily basis.
Identify *your* weak areas and plan to address them on a regualr basis. For myself, it is mold and parasites.
I plan to do maintenance mold treatments with essential oil dispursion in my home and vigilance for any mold issues. I would also add a parasite cleanse once or twice a year, especially if one has pets.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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quote:Originally posted by lightparfait: As you will not knoiw if its lyme resurfacing or if its toxins unless you detox and get free, so you wont need abx to keep all those symptoms away forever. [/QB]
I agree and that is the same thing I say about yeast. If you don't maintain a good diet how will you know if you still have lyme (or have it again) or if you have yeast? The symptoms can overlap.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TerryK
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Member # 8552
posted
Good points tutu. I forgot about candida. That's another problem I am prone to have.
I forgot to mention that I plan to add FIR sauna soon and will use it in my maintenance program as well.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Why not try an herbal protocol like the Nutramedix one or the Buhner herbs?
Maybe what's making you ill is something other than a bacteria...? If it's yeast, viral or parasite - the abx probably won't help.
Have you done a parasite cleanse? Doing a good detox program couldn't hurt. Just do it cautiously...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Haley
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Member # 22008
posted
If I was in that position I think I would go with the treat when I flare idea.
I recently heard Dr. B. speak and he said if a patient is not getting well to allow the stuff to come back and then hit it hard.
It's a tough decision. I guess the unknown variable is - will we make the bug more resistant if we continue on low doses of abx?
Neffer - That is interesting that the abx give you insomnia. I never really thought about that contributing to my insomnia but it probably is. I'm going on 3 hours of sleep right now.
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What are you doing for maintenance detox?
Posts: 10 | From USA | Registered: Jan 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Thank You thank you For the ideas
I guess I should have been a bit more detailed because I am doing as my treatments still with no end date :
Detox Detox Detox Rife Rife Diet
And I am still doing some supplements and addressing thyroid and adrenals.
I am taking Gaels advice because Salt C can and does so many things for me including adrenal support and continuous cleansing
I am not 100 percent symptom free and though did do a cycle and pulse transition off abx after I finished IVs.
I have one doctor who feels detox and rife are enough and another wanting me on the abx.
So I am just thinking outloud a bit. I have not decided yet. I do not have monthly Flares or any Flares at all. Whoo Hoo.. at this point.
I have consistent symptoms of fatigue and pain still but they are continually getting better each and every week I notice....
I believe in the DETOX more than anything and am not stopping that Ever!!! It is what got me through all this and allowed my body to be treated and not to suffer through it all.
I am not willing for any toxins to have a chance to build up again to where I was. No no no way no how..
I feel I am ready for no more abx at all and do not like the idea of adding them back to my body.
I am doing probiotics still and always will do that as well.
I do not feel SICK anymore. yeah!! I used to be so SICK it was horrible.. The sick feeling is gone. The fatigue like I said is getting better and better and when I used to count the days in bed in a row each month.. Up to 25 each Month!! NO joke. To now counting the hours I am up every day that transitioned from near none and now 8 to 12 and I am now instead paying attention to energy levels and post malaise.. The Post malaise is near gone too.>WOW. thats amazing. That has been strong for over a decade for me. No more.
Sometimes I think that this is about perspective. I know many of us if not all have different ranges of severity of this disease and how it as manifested. I myself was totally disabled from it and have not worked in over 10 years. I do not feel as if I am ready to work even after all the improvement. I was thinking the other day maybe some peoples worst is where I am at now? Thats an interesting thought. But I am continuing to get better all the time and am not flaring etc.
My body feels like it is settling into its new environment.
Thanks all
Blessings
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sutherngrl
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posted
You should take antibiotics for up to 6 months after being symptom free. During and after that time is the time you use to recondition your body after being disabled for so long.
Reconditioning in itself is a serious matter. It can take a year or two after being completely rid of TBI's to get your body to a normal state. If there is such a thing as normal.
I also have not been able to work.... (its been 4 years now) from being so ill; and even though I am starting to recover and things are going in the right direction, and many of my Lyme symptoms are improving; I have a very long way to go.
I think after a while of fighting everything that comes with LD, that your body is just worn out in the end. The illness itself might be gone, but the body has a lot of work to do.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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TerryK
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posted
I'm so glad you are doing well and already have a plan in place.
Personally, without some really compelling reason, I would not continue with abx. There are many other ways that are less harsh on the body if you don't have a big pathogen burden.
Perhaps look into the CD57 angle and consider getting a test. Seems like many LLMD's look at that to help determine the liklihood of relapse. It's just more data to help you make a decision.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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massman
Unregistered
posted
"your body is just worn out in the end. The illness itself might be gone, but the body has a lot of work to do." As said just above.
Keeping those organs that detox healthy is the key, not just staying on the drugs.
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posted
Springshowers I tried to PM you twice but your box is full..Remember we were going to share some info as per docs and such after you came back, I thought you were still away. Remember we PM's the beginning of June? Was so hoping to share with you.
Thanks
Posts: 29 | From arizona | Registered: May 2010
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posted
I have heard/read that you need to be totally symptom-free for 2-3 months before even thinking of discontinuing antibiotics.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Sounds like you are constantly improving, even with the setbacks - that is so hopeful. This thing is a marathon that's for sure.
I am here in Az. my third week. You probably know more than I, but a number of the people come back to this clinic for maintenance ozone and Vit IV, and do seem to do abx if symptoms flare. Last Friday a Dr. from Aspen came to speak about herbs etc... I guess some patients that plateaued here found great relief with him.
PM me if you can get together, I am here for a while - I would also like to ask you about the BCX machine - it's sitting here looking at me, but I haven't used it yet..
All the best
Posts: 29 | From California | Registered: Jan 2010
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posted
I would consider these options -- for the rest of your days on this planet:
- avoid all the obvious bad dietary items (booze, junk food, highly processed foods).
- learn about the myriad natural foods, herbs, medicines that you could consumer regularly; there are literally thousands!
- take the antifungal, antibacterial herbs & medicines monthly, if not more. Again, hundreds...
Even if you switch from the prescription meds to the natural ones, you should definitely find ways to detox -- especially your liver. If you don't, you will never get well.
I was bed-ridden for a few years. The MP got me better, but paying attention to my liver and candida got me the rest of the way there!
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
LemonLime. I pmd you. Sorry for the delay and full box. Been a bit busy and distracted.
CalMom. Same here and I replied to your email. I hope it helped.
Great to hear from others who have gotten better and what they went through or what they did to get "all the way there" or further along ..
Thanks for sharing. I think i am getting a good feel what I need to do and how to do it.. And its pretty cool to be making this choice I have to say.. No matter what I it is..
I dreamt about making a choice and being at this point. I am going to enjoy it.. !!!!
I hope others who go to Envita have a good experience.
I did have bumps in the road and now looking back I think that my body was lagging in its response which I now can see more clearly as "to be expected and normal for this disease" So keep that in mind and do not judge based on your immediate reaction or feeling during treatment.
Some may have a more immediate result but some may not..
Take care.
I have not taken the abx "yet" and May not or may save the bottle .. I am preferring the rifing by far and it seems to be working for me..
So.. hey... I think thats how I will continue for now....
Thanks EVERYONE for your comments and support!!
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lymetwister
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Member # 19590
posted
My LLMD says I should stay on low maintenance dose when I am well so not to relapse as you speak about.
He says you can not fully eradicate this disease, but only get it into remission.
I don't mind taking a low dose abx for the rest of my life if it means never having to go through this ever again.
I can't imagine getting well and back to life and then have to go through this all over again.
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bcb1200
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posted
I think it depends on the person. For me personally, I want to get to 100% and off drugs like Six Goofy, TF, and many others here. I have no problem taking probiotics the rest of my life, or supplements. But I do not believe abx for the rest of my life is something that is healthy for the body.
Lymetwister...I have also heard that once you are disseminated you basically have a very minimal chance of completely eradicating Bb. But the idea is to keep it in check with your immune system. My doc says it's like Chicken Pox. If you've had chicken pox...you STILL have it. But your body is keeping it at bay. It may flare later in life as shingles. Lyme is / can be like that.
Cold Feet. Good to see a fellow "Mass-hole." I'm sorry, but I do enjoy my wine and / or beer from time to time. I plan on enjoying these again once I"m off treatment.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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mojo
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Member # 9309
posted
I think I'll be a "Lifer Rifer" but don't like the idea of permanent ABX. I know my Dr. wouldn't prescribe them, either.
I am only rifing and detoxing right now. The two things I couldn't live without are my IR sauna and my EMEM 5A!
I'm not done with ABX, though. I figure after beating down the bugs a little longer I want to blast them again with high dose ABX.
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