livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
many people are saying that after ABX they are cured... are you saying you are cured and can stop the meds?
or are you saying provided you stay on the MEDs you are cured.. cause that is not "cured" that is being "treated" or "controlled". I don't know anyone to date.. but then again I don't KNOW many people who have been cured.. I know people who go into remission and then relapse.. but no one can tell a story that they have been "cured" and never have a relapse not to date that I know of...
If so, please tell me who.. I would love to talk with them.. I'm not being sarcastic either.. I am being flat out honest.. I want to know what I am doing wrong that I am relapsing after only stopping for 4 months..after ebing treated for 3 years on numerous ABX some strong doses and some lower doses...
I can not believe that my children are looking at a brighter future if they are dealing with the same as I am..I know everyone is different, but they are my flesh and blood,, and I do believe that they contracted this from me via birth since I was infected God only knows how many times..
I lived in a wooded 2 acre lot in Toms River NJ. while growing up and we *averaged* (somenights there were a slew of them, other nights maybe none) a tick a week on a head check every night.. if you take this by half the time I lived there which would be 8.5 years you have a total of 1768 tick bites in 8.5 years... I lived there until I was 32.. of course only 17 years of that were running in fields and forests and having to do tick checks...which would have given me exposure to 3536 bites now how many of them had lyme? ok they have the percents and it is roughly 90% of ticks on the northeastern coast are infected.... so no wonder I have been sick most of my life.. LOL
OK reality check.. this is just a test .. if it were the real thing you should tune your radio in to.. TKUSA (TICK KILLER USA)
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
I know 2 entire familys that are cured!
One is my dentist and his family. His wife relapsed once early on in treatment and got more treatment. Another is a family that is freinds of my family.
In fact the family freind thought I had Lyme. Thank you Terry!
They all were on all different types of antibiotics including IV. They all took suppliments and heavy amounts of vitamins.
Never give up!
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
LL:
Hey fellow Jerseyite, boy do I hear you! I remember my Dad checking my head every night and pulling ticks off of me all the time. He was fanatical about it because we ran around in the fields where their were deer and mice - not far from Tom's River.
But, I can't think about that too much. I have to concentrate on getting well NOW.
Yes, people have been cured, even people from NJ. I am not one of them yet. I am well into my third year of antibiotics for chronic Lyme. I have thrown in the towel a couple of times and keep coming back to the abx well. I have to believe that I will beat this thing, that my body will win. It is still fighting.
You don't hear too many success stories here because those folks move on when they get well. I am hopeful that we all will be moving on soon.
I think we're all different. Some have been cured but are they really cured or are they only in remission? I don't think anyone really knows the answer to this question.
I think the infection does damage to the immune system that can't be reversed. I can't see any of us going back to a life of fast food, drinking lots of caffiene and working all hours to the point of exhaustion (my old lifestyle).
I believe we'll always be somewhat "damaged goods." I'm not saying that we can't get a lot better.
I've gotten a lot better since starting this rollercoaster ride. I still don't rebound the way I used to after exertion and I don't think I ever will. I still have bad spells too. I just keep praying that I don't fall back to feeling horrible all the time again.
I'm still taking some meds but nothing like I have in the past.
On the brighter side, I can now make plans and do things that I only dreamed about doing for the last 3 years. I've been camping and hiking and driving long distances. I feel like I'm contributing at work again and I'm waking up feeling refreshed a lot of the time.
I know how it feels thinking you'll never get out of the rut. I know how it feels to have to think of yourself as disabled. I know how it feels to think that people don't have a clue about how you're feeling mentally or physically.
I also know that we can beat this if we just remain patient (no pun intended), take care of ourselves first, give ourselves a break, keep learning everything we can about these diseases and search high and low for the treatment that will help us most.
Sorry this got so long.
Take care,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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posted
Depending on many many variables, if its caught early or late, co-infections, genetice makeup, strain, proper treatment, etc, etc some are cured, others reach remission, and others still need abx ongoing for management. This is my understanding.
Posts: 925 | From California | Registered: Sep 2004
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liz28
Unregistered
posted
It's too soon for me to tell. But I've heard many, many stories of people who have been cured. They just don't bother with a Lyme website.
By the way, I don't really care what the difference is. I was disabled for five years, lost much of my ability to read and write, was too exhausted to walk anywhere, much less make plans to have a career, worked as a graveyard shift secretary, tore through my parents' life savings, lost about 500 friends, and lived in desperate poverty.
A year ago, I started taking the right drugs, adding in one at a time. I officially went into remission in August, not as a result of some magical unknowable quirk of fate, but because I combined ketek and rifampin. I recently earned my second master's degree, work 60 hours a week at three different entry-level jobs in my field, jog three miles every other day, practice yoga every day, read, write, and am making long-range plans to either move abroad or find a way to travel full-time for my job in the future.
In the process of recovering from Lyme, I've started taking all the supplements that are now being written up as lifesavers in the mainstream press. CoQ10, flaxseed, alpha lipoic acid, NAC, selenium are all just beginning to be identified as necessary to good health.
My guess is I will be on these drugs for 1-2 more years. So what?
By the way, I don't agree with the person who said we are damaged goods. That's ridiculous, and that person will change her mind the moment she finds the right abx.
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