lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi, I am just curious to know how long many of you have been in treatment. I have been in treatment nearly a year. I really felt recently I was turning a corner - going a month with tolerable pain levels, I have never gone that long. Then bam, its back.
I would think after a year of treatment, I should be much better - but the pain just keeps flaring, is it possible to be herxing after this long?
How long have you been in treatment and have you turned that corner that many talk of?
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Lymebytes,
I think treatment time depends on alot of factors. How long you where sick prior to treatment. How high your germ load is. How many co-infections you have ect..
I was sick with lyme for 7 years before my first treament 12 years ago. Had IV abx then 9 years of oral follow up, that inabled me to be 80% better for 9 years. It was a wonderful 9 years. Got alot of living in there. And to me was worth all the herxing & pain ect...
But aprox 4/5 years ago was either re-infected or had a major relapse. Did 6 months IV abx & aprox 3 years of oral followup. I am much better than I was 4/5 years ago but still have a ways to go in some aspects.
Hope this helps
and you can feel better soon Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
I was really sick for 8 months before I got treatment from my wonderful LLMD - it took me about as long as that to start feeling really good again. It's been 6 years and 1 month since I got sick - now I am symptom free most of the time and I am able to go months without meds! When I do have a flare up of symptoms, they are relatively mild and I go back on the abx for a few weeks until the symptoms are gone. So I guess you could say I've turned the corner...
There is hope, even if it doesn't feel like it right now!! Don't give up!!
Posts: 438 | From SE Michigan | Registered: Jul 2001
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posted
It took me two years before turning the corner. I took abx for 4 yrs straight. Been off for 2 1/2 yrs now and doing well!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
I've been in treatment with my LLMD for 2 years.
Prior to that I had 4 - 5 months of low dose abx from a non-LL NP while I waited to see my LLMD.
I was first infected in '82, with many more bites over the ensuing years, so it's long-standing infection - that definitely impacts how long we need treatment.
At the end of my first 18 months of treatment w/ LLMD, I felt I had turned the corner. A recent babs relapse has set me way back, though.
I've found that the second year of treatment has been the hardest, in terms of maintaining my patience level. I'm ready to move on, and really turn the corner too!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Sick bad for 1.5 years. Started oral ABX and been on them for 6 months and feel 5-10% improved. Still got 40% to go!
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I've had lyme for 20 years, and maybe 30.
I've gone in and out of horrible crashes and fairly good health with some continuing strong lyme symptoms over the years.
I've been in really bad shape over the last five years, to the point that I couldn't sleep at night, or get out of bed in the morning, and couln't put a sentence together.
Four months ago I formally started lyme treatement, of an approach mainly herbal, supplements, Sota pulser, heat, salt/c, homeopathics, massage, energy work,
and stressful people removal, with the help of two professional friends and two ART practitioners.
Also included in my treatment is natural hormone replacement therapy, adrenal support, and cortef. I also had two weeks abx for a tooth removal.
I'd say in these four months I'm half way better, with a looooong way to go!
Now the pain is just annoying most days, I can talk politics and remember the presiden't name, and I can feed my kids dinner most nights.
I'm still tired most of the time, have massive floaters, and bad IC.
I'm hitting this with everything I've got (short of abx at the moment) and it takes a good portion of my day every day, and a pile of loan money.
I'm focused on this like my life depends on it, because it does.
My goal is complete health with ongoing maintenence and treament by December. I realize how fortunate I am to have so many good resources in my healing. I think I can do it!
Best wishes in your healing process!
bejoy
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Vanilla
Unregistered
posted
I have been in treatment for a year and I am getting better and my LLMD said the goal is for me to go off all meds in 3 months and just do herbs.
I will do just Tibetan herbs when I go off all meds and acupuncture and hopefully that will work.
I was diagnosed in 2006 and went un-diagnosed for about 16 years before that.
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bettyg
Unregistered
posted
biten 37.5 yrs. ago by a tick off a LIVE XMAS TREE from my folks' farm home; never knew it; never seen it, and no rash.
MISDIAGNOSED 34 yrs. by 40-50 mds/specialists giving me every name in the book.
diagnosed 7-12-04, 3 yrs. coming up shortly by igenex's western blot igm/igg by a clinical diagnosis from my primary dr. of 25 years!! i'm his 1st lyme patient. he retires aug. 1 this yr!
1st llmd, i was on pulsed biaxin and doxycycline for 20 months until i went to 2nd llmd.
2nd llmd stopped the abx, and put me on 22 supplements for 6 months; went really downhill, and still have the worst fatigue from that point on.
off everything. working on my no wheat, rye, cow's milks, cheeses, egg whites, and garlic in my diabetes 2 diet!
working on mold issues too, and learning how to walk again with my brand new hip 3-26-07.
i'm in much better shape than most folks on the board; or at least i feel that way after reading their posts.
got 4 life-threatening things going on, but that's life! why worry.....be HAPPY!
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I've been on antibiotics since Oct. of 2006.
I have a ways to go, but I am better than I was before diagnosis and proper treatment.
I sometimes wonder when I will feel like myself again.
However, I have gotten some quality back that I didn't have before.
I can really appreciate my children now whereas I couldn't before treatment.
That for me is a huge marker of success.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I had Lyme 18 years before diagnosed. I've been in treatment for 3 years now, but I stopped abx this fall because of GI issues.
I was doing much better, but have had increased fatigue lately which is kind of new. I'm going to push my LLMD to put me back on abx at my next visit to see if that makes a difference or not.
I haven't done IV because my LLMD is concerned it would be too hard on the organs.
Overall, I'm much better than when I started. I couldn't use my hands when I started treatment. Now I do yoga regularly, including hand stands.
I had some scary neuro symptoms start in the middle of treatment. I developed motor tics which meant I had uncontrolled movements. That stopped.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I have had Lyme for 35 years. I have always been into health food and supplementation. Detoxing has always been a priority because it makes me feel better.
I had my amalgams out way before I knew about Lyme and chelated metals back then (1991).
I have been in treatment for Lyme and babs for five months. I've gone from 15% overall, to 70% overall, except during a herx. I feel like I have turned that corner ... yet then a herx hits and I'm down for a week ... it then takes a few days to get back to the 70%.
I can't wait to turn the next corner!!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Up for more feedback. I think this post helps both with dealing with the longterm nature of getting better, and with hope that people are really making progress!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I had a tick bite and bullseye rash in 1996. I was dx then and treated with 15 days of abx.
I had no idea the disease was still in me and over the next 9 years, I developed a stream of bizarre symptoms. 14 ducks misdiagnosed me; I spent a ton of money based on their suggestions. My health quickly degenerated finally in 2005 to about 18% of capacity.
That's when I finally made my way to this board, found my LLMD and tested strong positive for Lyme. I've been on abx since.
In addition to the oral antibiotics I take, I also get weekly acupuncture treatments and take Chinese herbs.
My health is now at about 80%. I have herxy times (in the midst of one now). Some remaining numbness in my left side and some pesky neuro stuff.
But I'm working fulltime and enjoying a bit of a social life in addition...
And I'm grateful every day for what progress I have made. When I was completely paralyzed or having seizures, I never really imagined I'd get to this point.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Thank you for your encouraging stories. I have said it before and I will say it again, Lyme patients are the most awesome people on earth -
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