I have been treated for a little over a year. I know that every case is individual but I wanted to get an idea of how long other people are being treated.
Thanks
Posted by tickssuck (Member # 15388) on :
13 months so far, only slight, slight improvement. TS
Posted by Wonko (Member # 18318) on :
About 4.5 months. Enough ups and downs to both confirm to me that treatment is working, and to worry about how long and difficult it will be.
Posted by sixgoofykids (Member # 11141) on :
Two years and 3 months, started out at about 15% healthy, now am overall 90% healthy.
[ 04-21-2009, 10:10 PM: Message edited by: sixgoofykids ]
Posted by drewby (Member # 15253) on :
one year and no better. Maybe even worse. Then again I am on a very low dose of Doxy and thats it. Time to get more aggressive with the meds
Posted by adamm (Member # 11910) on :
15 months; started out 90%, am now 70%
Posted by hezzer926 (Member # 17902) on :
7 months... started out at 30%, now I'm probably 60%
Posted by Lymetoo (Member # 743) on :
It took 4 yrs of constant abx before I was in remission. I was not dxd until 42 yrs after contracting Lyme. ....50 yrs and counting....
Posted by joalo (Member # 12752) on :
Three years so far.
Posted by abbyjo (Member # 16073) on :
9 1/2 months. Have babs as well. started out at
maybe 15% Now I'm at about 85% (I was 2 years
undiagnosed).
Posted by kimwg (Member # 19094) on :
since late February for the Lyme-specific treatments -- I know it's only a couple of months on the abx but I am desperately waiting for the second big herx to end...
Posted by bwillis (Member # 18811) on :
Since Jan 2009. Still waiting for something to happen.
Posted by aiden424 (Member # 7633) on :
Four years with only slight improvements.
Kathy
Posted by Jasmin (Member # 19959) on :
This thread is disturbing to me. I knew it takes a long time to treat it, but for some reason I assumed there would be great improvements right away to keep y'all going. Now it has me wondering if I even want to go the antibiotics route. I don't even like to take Tylenol when I'm in pain.
Posted by venus (Member # 16991) on :
Since Sept 08 - so 7 1/2 months. Was acutely sick for 15 months before that, but wonder really how long I have had it.
I have seen progress, espeicially in the last 6 weeks. I can't put a percentage on it. I am seeing progress.
I foolishly tought I would be better in 6 months - ha. I also didn't think I would make it through the first month.
Hang in there. I am trying to stay optimistic as well. Kathy
Posted by aiden424 (Member # 7633) on :
I think it depends on how long you had it and how sick you were before you started treatment.
I had it for 19 years before treatment. I was in a wheelchair and was extremely sick. I think without treatment I would have died.
I'm still in a wheelchair but I don't feel like I'm going to die anymore. I was so far down and it's a long way back up!!
Kathy
Posted by blinkie (Member # 14470) on :
Don't let this thread discourage you. The information that is not here is the specific treatments people have been on. Just because one person says they have treated for years with no improvement, it means nothing.
Me: 17 months started at 25% now at 75%
Posted by nenet (Member # 13174) on :
quote:Originally posted by Wonko: Enough ups and downs to both confirm to me that treatment is working, and to worry about how long and difficult it will be.
Exactly where you are, Wonko.
Treating about 8 months so far, and on minimal doses of one antibio, because I can barely tolerate herxes even on the smallest of doses. I am working my way up slowly, and still herxing with each increase.
I knew this would take me years, if I could reach remission. I have had Lyme (and I suspect Bartonella, not sure about other coinfections yet, still trying to ramp up on Lyme before I can address) for about 30-35 years.
I have had some things improve after years and years, and then they worsen again. This tells me I am on the right path, as we are talking over a decade of one symptom or another, with no let up at all *until* I went into antibio therapy.
One example I can give you that is very clear-cut and visible, is my handwriting. I have such ingrained Neuro-Lyme that for almost 2 decades now, I have had a terrible time trying to write - words and letters would get mangled, letters transposed or illegible. When I was younger I had very good handwriting, I was an artist as well, so had good eye-hand and abstraction and conceptual abilities. Then it all went south, for many years.
Every letter and word was a struggle, to write it, to remember the word I was in the process of writing, and to recall its spelling (another thing I used to excell at). I would mangle about 20-50 percent of my words, without fail, and had to really concentrate and focus to get them out even then.
About 4 weeks ago, I found myself writing some language lessons in a notebook, and got to the end of a page only to discover that I had made no mistakes, and I hadn't even had to focus or struggle, the whole way through.
That was a revelatory moment.
Then to illustrate the other side of this, later that day I tried to type on the computer, and I was making way more typos than before (been happening still for weeks now). And now my handwriting is back to the way it was before.
Symptoms wax and wane with this disease, but such a drastic change for the better after so long is VERY meaningful, even if only glimpsed for a moment.
Anyway, long story made longer, that day when I filled up that page with words without struggling, I knew something was happening. I had one more piece of evidence that I am doing the right thing.
Posted by tumbleweed2 (Member # 20032) on :
Thanks for your replies. Wow, it's all over the place....I guess it is what I expected, sort of.
Posted by toby67 (Member # 17143) on :
2 years with little or no improvement. But I've had this 30 plus years, so it might take awhile. Had another cd57 last month and my levels went down.
very frusrating mentally to see that. But i keep telling myself it's like cleaning a closet, it gets worse before it gets better... Hang in there.
Posted by Geneal (Member # 10375) on :
Hmmmm. I am 30 months in (2 1/2 years).
However, I don't just have Lyme.
Babesia and bartonella are in the mix too.
With co-infections, treatment is generally longer and
Sometimes more complicating.
I started with being unable to walk, talk, remember, etc.
I am back to work full time now.
I am a Speech Pathologist.
I still have good and bad days, however, overall
I am so much better than I was prior to dx. and starting therapy.
I stopped thinking of my therapy related to time.
Like how long I've been doing this.
I don't care if I am on meds for the rest of my life.
I just want to be functional and able to appreciate every day.
Good or bad.
Hugs,
Geneal
Posted by nenet (Member # 13174) on :
tumbleweed, you might want to view this thread and the linked threads within it, to see an actual sampling of treatment regimens and lengths to get to remission:
The vast majority of people that are here are very new, or have been here for a while and are still in treatment, or just started treatment, so our treatment lengths don't really speak directly to how long it takes for each of us to reach remission.
The treatment lengths in that thread will still be wildly varied, but I believe that a large portion spend at least 2-3 years in treatment before a large abatement of symptoms or full remission. This number is only a very wide guess loosely based on anecdotes from here and other sources. It is about as far as you can get from a scientific answer.
But again, as I'm sure you already know, but stating for anyone new to this: each person is unique, with their own health level, treatment regimen, infections, and lifestyle, so it's impossible to judge one's own treatment trajectory against someone else's.
Posted by renny (Member # 11224) on :
I have been treated for going on 3 years. Infected for 15 years before diagnosis. My improvement has been slow but I have seen some. I have Lyme and bartonella. I, too, thought I would take abx for a few months and be normal again and the reality hit me pretty hard. As has already been said, I know some who have taken a few months of abx and been fine but they were recently infected. I am on Biaxin, minocycline, nystatin and various supplements. THose who have been treated for some years and have finally seen improvement are an encouragement to me that it may just take a while and I try to stay positive (not very successfully most of the time).
Posted by cottonbrain (Member # 13769) on :
15 months.
improvement in migraines and sleep, but i still have huge problems in many areas.
misdiagnosed 15 years before beginning treatment.
Posted by Judy G. (Member # 18498) on :
5 and a half months and I am taking a break from agressive antibiotics. I am MUCH better and hope this may be it.
My doc thinks I had only Lyme and probably had it for a couple of years.
Posted by fatigued15 (Member # 6437) on :
daughter age 20 4 1/2 years. This last year she has had dramatic improvements, slow but steady improvements now.
son age 28 3 1/2 years, was of all meds at one point but relapsed. Is doing much better
myself 11 months my joint pain has really improved, everything else is slowly improving.