stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
when do you know when to stop long term abx?? do you stop when you feel good for three months and see what happens?
at some point i think you must stop and evaluate also there is a toxcity factor,also a drug resistance factor.
just added bactrim ds to my heavy regime and herxed immediately. this means all the other abx's were never working?????
the longer i go ,the more confused i get. 6 years and no better than first detected, in fact mental gone down hill considerably. went from depresed to bipolar and angry.
anybody just stop abx and feel better?? i did this 3 years ago and was in remission for 2 years, but was i just doing more damage to my body, or was i really in remission???
can lyme and babs go into remission , or do they still destroy subclinically, but the body sdoesn't know it is being d damaged?????
any answer will do even zman
docdave the troll
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Good topic for the Conference Dave.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
The conventional wisdowm among Lyme specialists seems to be that you treat until the patient has been asymptomatic for 2 months. Patients will probably have to remain vigilant for the rest of their lives about symptoms and getting back on meds if they return.
Having said that, after 2 1/2 years of treatment, I will stop meds when I finish my last bottle of Mepron in a couple of weeks to see how I respond. Some patients do report feeling better only after cessation of meds.
IMO, it seems that it is probably a good idea to try to come off meds every couple of years -- if you are well enough -- to assess. I suspect that this will serve mostly as a detox break as I doubt that I would feel this poorly if it were just the meds.
As the French say, "On verra." ["We will see."]
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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Why have some of you been on ABX for so long and still sick?
I don't mean to look down on anybody in any way, but my understanding is that normally it will take 2-3 years of aggressive ABX and be done.
That's an average length of treatment, but I just didn't expect it to take longer than 5 years or so.
I know everybody's different - duration, severity and symptoms of Lyme, co-infections, immune system, existense of other illnesses, etc.
And I know everyone responds to ABX differently.
My LLMD did say I would be on ABX for the rest of my life if I were to be on a maintenance dose.
She also said that with aggressive treatment I would be on ABX for a much shorter period of time: 2-3 years.
Am I too optimistic here? Too naive to think I will be fine in 2-3 years if I go with aggressive treatment?
So, are you, who have been on ABX for a very long time, on a very low dose of ABX?
Have you been sick with Lyme for a long time? How long?
shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
suduko: i am not sure if anybody with lyme is contiuously on high doses of abx.
my doc changes them every six months to prevent resistance.
when i feel toxic, i tell him and we weed \ off the abx for a week.
right now i have been herxing for 6 days on bactrim ds for resistant strain of staph aureus. only 2 abx work on this strain Vancomycin and Daptomycin, both of which he wants to leave as a last resort.
the problem with any long term abx use is SUPERINFECTION. this is an overgrowth of natural flora in the body that is controled by the natural bacteria in the body.
when abx kill the natural bacteria,ie strept,staph, ecoli, and others that are in the mouth and digestive track and help with the natural digestion of foods. e coli in the intestines help produce vit K and B-complex vitamins from digested foods.
the result is an overgrowth or superinfection of yeast, fungus, bad strept,killer e-coli, bad strept and staph. the mouth and vagina are the most vunerble, so they are the first places to get yeast infections. Sugar and high carbs feed the yeast, but don't cause the yeast.
so i don't know why i got to this point i think i'm brain dead and just typing to keep awake.
docdave the troll
please don't feed the troll, he's fat enough as it is. i do however accept cash and paypal.
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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posted
I am sorry that you have to endure pain and suffering for so long.
I just started my Lyme treatment back in March, and in May I had to reduce the dose due to repeated episodes of fainting.
I understand - nobody can predict how we respond to certain ABX, and our doctors do need to adjust the dose and/or change ABX accordingly - potential slow down.
I am wondering, as I am still new to the Lyme world, if IV is a better choice for our gut's sake.
Perhaps not everybody need or tolerate ir or even afford it, but my understanding is that you can take a higher dose of ABX via IV, thus shortening the duration of the treatment.
Is that true?
shizuko
Posts: 110 | From Northern Virginia | Registered: Nov 2005
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posted
I have the same question.......I'm so sick of dealing with the IV and while I may be 10-20% better, I still feel like I'm dying.
I'm going to ask the doc to take me off as it doesn't seem to be helping me, either physically or mentally.
I am so depressed and feel like I lost not only my life but my intellect too. I wish someone had an answer for us. Posts: 867 | From PA | Registered: Jan 2006
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If it was me (and I don't know how you feel about the Rife machine) I would continue to use the Rife machine to keep the lymies away.
Dan Tracy who builds the machine at cost for people because he got well with Rife, says his hasn't come back because he is constantly working on machines and trying out the frequencies. (He built one for a friend of mine and told her this.)
Its just a suggestion and you may not like Rife at all so don't flame me.
That is what I would do and am using it right now along with other alternatives. I use it for viruses, candida, there are frequencies for co-infections but I don't know how well they work from what I've read here, plus parasites.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Shizuko,
IV can actually be harder on the gut. In particular, IV Rocephin is known to cause gallbladder problems.
My LLMD really thought I would be under a year based on my initial symptoms. I never thought it would be so short because I had been infected 17 years when she diagnosed me.
But she really has seemed surprised that I'm still not well after 2.5 years. I take that surprise as a kind of proof that other people under her treatment do get well faster.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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