Has anyone here gotten to a place of wellness & remained in remission without taking any sort of maintenance ABX?
If so, for how long and by what means?
I value all input. PLEASE be kind to each other (as I'm sure you all will. )
Thanks in advance.
Ali
[ 06. February 2008, 03:47 PM: Message edited by: AliG ]
Posted by adamm (Member # 11910) on :
Yep--know one personally who's been symptom-free for a decade
now, and another who's been so for 7 years. Both were having
significant multi-system involvement, and one had been sick
for a year before treatment began.
They were probably, though, relatively simple cases, without
co-infections. Neither was treated by an ILADS LLMD.
(I'm not certain what their treatments were, though I know that
the more disable of the two recovered in 2 months.)
Posted by valymemom (Member # 7076) on :
Yes, I started treatment 6 months after removing my tick. I was treated with abx for lyme & bart for 14 months......month 12 I was symptom-free......so my llmd had me remain on abx for two more months.
It has been a year now since abx and I have taken some Cowden and Buhner herbs along with daily supplements faithfully. I did stop the resveratrol and samento for 6-8 weeks in the summer & I had some symptoms I never had before develop: tingling and numbness in fingers and toes. Once I got back on the two products, I was/am fine.
I am staying with antimicrobials and detox herbals.
Posted by sixgoofykids (Member # 11141) on :
I don't know if this is what you're looking for .... I've had this for 35 years. Between 1982 and 1991, I was very sick with it three times for several months ... to the point where I spent most of my days lying around.
I did not know what was wrong. In 1991 I went on an elimination diet, had amalgams removed, and exercised. I was in remission until 2003.
I would have random symptoms sometimes, but otherwise felt good. I would even get asked how I had all that energy.
I exercised, ate very healthy, took supplements (varied, but always included a good multiple and garlic with astragalus).
My current illness was after a prolonged period of stress .... I am getting close to remission again ... so I'm also looking forward to your answers.
I do plan on taking supps, but I always have! I know my LLMD is in remission (about 15 years), off abx. He takes lots of supps. He says he has had good luck getting people off abx with Cowden ... specifically, those who generally relapse when off abx.
Posted by Lymetoo (Member # 743) on :
I have been in remission for more than 3 yrs without abx. (not counting the abx for my sinus infection)
I take Xango and I Rife about once a month.
Posted by adamm (Member # 11910) on :
Hey, Tutu..how are you feeling now, BTW?
Posted by Lymetoo (Member # 743) on :
OK* Adam....thanks for asking!
I'm still having computer problems. I took the desk top puter in for HELP today and am on my new laptop!
*EXCEPT .. I'm having abdominal pain today. I had an attack like this in December and can't say it was my first.
Anyway, I went to Urgent Care and they gave me Carafate. Hasn't done anything for me so far. I have had very little to eat today.
It's not a virus. I know that. Sorry you asked ???
PS... I've been off the abx now for more than a week. I think my stomach is suffering from the abx over the past few months.
Sinuses feel GREAT!! Posted by lucy96734 (Member # 8372) on :
I'm working on it. I've been off for just over 2 months.
Sick for over 5 years before dx. Multisystem problems, mainly pain- joint, muscle, and nerve.
23 months of abx plus 7 month of Mepron and I have been off them since November.
I'm still taking herbs (Cowden) as my LLMD has said that he has better results with people who phase out with that. @ more month of herbs planned.
I hesitate to say cured but I'm living life and off medications, something I wouldn't have thought possible before I met my LLMD.
Posted by mlkeen (Member # 1260) on :
I've been off abx for two years. No symptoms.
Posted by mlkeen (Member # 1260) on :
I was asked for details so-here goes.
I probably got lyme and other TBI sometime between 1997 and 2000. I got a dog which I walked in the woods and collected ticks. I stopped walking in the woods and had strange symptoms at first, rashes, bronchitis, insomnia, nothing connected until I started to have intermittent, transient arthritis.
Light bulb moment.
I go to the local doc who flips because I self diagnosed. He ran all kinds of tests. My Elisa was positive and I was very anemic. He refused treatment because I didn't have swollen knees. I wanted to know why I was so anemic.
I bounced from doc to doc trying to get treatment and eventually ended up at an IV clinic in NJ. I tested positive by PCR and was given a three month course of rocephin and zithramax. Symptoms changed, but I didn't get well. Didn't test positive during the next six months and could not receive more IV. This was ok, because I suspected it was the correct course for me.
I discovered what a LLMD was when I found Lymenet.
Ok, this is the real part about healing. At the LLMD I tested positive for lyme, bart, Rocky Mountain and mycoplasma and was put on long term tetracycline to address all four infections. I did reduce my carb intake and also took some vitamins. I was still anemic.
I did start to get well gradually. After 15 months of tetra I was put on diflucan and rotated diflucan and abx for a couple of months. I had the most improvement on the diflucan. My llmd and I came to understand that much of my stiffness and fatigue were now yeast related. My test results were all coming back normal it this point. I still had constant pain in my hands and feet.
OK, so the llmd decides it's time to get serious about food sensitivities even though my gluten antibody test came back normal. He had me give up all grains for several weeks. I was pain free and energized at the end of three weeks! Blood work after two months showed my iron levels in the low normal range. I had long since stopped taking iron supplements. I have done nothing but improve since then, No more office visits or tests, just wellness.
I added foods back one at a time to see my body's reaction, no problem with potatoes or brown rice. I started making breads with other grains besides wheat to fill the void. Several months after eating no wheat I ate a slice of pizza and four days later that old hand pain returned but resolved over a week or ten days. I could hardly believe it.
I had finally discovered the underlying compromise of my immune system. I was so happy that it wasn't my fillings!!( I have been having them replaced gradually as they wear out). Looking back I have probably been gluten intolerant since college, I started having seasonal allergies. I don't seem to be bothered by much now, just smoke and mold. OK, so they are the big ones. The real interesting part here is that I had absolutely no noticeable gut issues, just silent malabsorbtion from the inflammation caused by wheat.
Today I'm happily wheat free and rarely bother making substitutes for bread or cookies. I just have potatoes, rice and dark chocolate!!!
Posted by Lymetoo (Member # 743) on :
The real interesting part here is that I had absolutely no noticeable gut issues, just silent malabsorbtion from the inflammation caused by wheat.
=====================
I did have noticeable gut issues when I finally went gluten-free....but I can tell you that when I gave up all grains several weeks ago, I could really tell the difference!
I ate no grains while going thru Lyme treatment, but began adding them back several years ago. The swelling in my forefinger joints is almost down to completely normal since staying away from grains again.
It's hard to pass up Mexican food, but I do for the most part. Occasionally I cheat!
For all of you who have joint pain, I highly recommend a trial run of NO GLUTEN and/or NO GRAINS.
Ali...mailbox full...
Posted by CaliforniaLyme (Member # 7136) on :
I know a dozen plus locals in full remission not using any maintenance abx.
Posted by mlkeen (Member # 1260) on :
When I eat Mexican I only do corn tortillas. I tolerate corn pretty well.
Chili's is out, no corn tortillas there, at least in Pa.
The Taco and Faheita season packs often have "modified food Starch" (wheat) and dairy in them, so it is best to season from scratch if making Mexican at home.
Yes, my knobby finger knuckles are getting smaller too. My shoes fit better.
Posted by Michelle M (Member # 7200) on :
I am antibiotic-free.
Did pretty aggressive orals plus a month of IV. Doxy, high-dose Amoxicillin + Probenecid, Biaxin, Flagyl, Plaquenil were all featured at some point. Failed treatment after a year; discovered babesia WA-1. Treated it twice.
Then did 3-4 months of minocycline only, 200mg a day.
I've been off ALL antibiotics for at least six months, possibly a bit longer.
I'm A-OK.
There is some linger-some brain stuff and nerve damage which may not be fixable. I work around it, and capitalize instead on what I CAN do.
I used Theralac daily for most of treatment as my probiotic of choice.
I have never done any particular diet modification but have always eaten fairly well in any case (mostly seafood and fresh veggies).
It was a long road. I recall at times -- six months into treatment -- even a YEAR into treatment!!! -- when I felt like it would never get better.
Yet here I am. So much better I would barely recognize the person who came to my LLMD in 2005 and said, "Look, please don't treat me for lyme if you really think I have MS." (My previous diagnosis.) At times progress was so excruciatingly slow that I had no faith, and just kind of stumbled along. It was so hard to trust that my LLMD could possibly be right to want me to keep treating.
Yet, he was.
Finding an LLMD whom you trust, plus a dash of faith, seemed for me to be the key.
Michelle
Posted by Lymetoo (Member # 743) on :
mlkeen...Ditto for me on the corn tortillas. And uh....I think it's "fajitas" you are referring to!
Michelle...Good to hear that you are doing so well!
Posted by AliG (Member # 9734) on :
Thanks everyone for your input.
I want to post replies but am struggling with brain fog right now.
I don't want to lose track of this so I'm boosting it up again.
Ali
Posted by Lymetoo (Member # 743) on :
That's so awesome tabers!!!
Glad you came back to tell us!! You could add your success story over in General Support.
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