posted
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
Posts: 19 | From New York | Registered: Apr 2009
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posted
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.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Two years and 3 months, started out at about 15% healthy, now am overall 90% healthy.
posted
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
Posts: 29 | From New York | Registered: Apr 2008
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adamm
Unregistered
posted
15 months; started out 90%, am now 70%
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posted
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....
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Three years so far.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
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...
-------------------- Wildlife biologist working in tropics since 1997; tick bites in Nicaragua in March 2007, started getting sick May 2007; diagnosed with Lyme based on serological testing in Jan 2009; treatment starting Feb 2009. Wish me luck! Posts: 116 | From Seattle | Registered: Feb 2009
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-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
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.
-------------------- Never doubt in darkness what the daylight proves to you. Posts: 418 | From Utah | Registered: Apr 2009
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posted
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
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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posted
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
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
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%
Posts: 1104 | From N.California | Registered: Jan 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
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
Thanks for your replies. Wow, it's all over the place....I guess it is what I expected, sort of.
Posts: 19 | From New York | Registered: Apr 2009
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toby67
Unregistered
posted
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.
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
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
Posts: 6250 | From Louisiana | Registered: Oct 2006
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
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
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).
Posts: 33 | From Ohio | Registered: Feb 2007
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
15 months.
improvement in migraines and sleep, but i still have huge problems in many areas.
misdiagnosed 15 years before beginning treatment.
Posts: 1173 | From USA | Registered: Nov 2007
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