posted
I'm new to the Message Board and was diagonised with Lyme last week. After reading so many post, I'm wondering if anyone has gone into remission or had actually gotten well from this disease.
This is quite scary to me in that I have four coinfections, plus Lyme..........
I am currently receiving treatment with the FFC in Atlanta. Was wondering if anyone else with Lyme is being treated at one of the FCC around the country.
Any information will be appreciated.
Thanks, Dalphia
Any response will be so appreciated.
Posts: 97 | From Tennessee | Registered: Nov 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Yikes........the silence is deafening, huh?
I honestly don't know, but from the short time I've been on the board...I think there are a few people in remission that still post.
Best of luck to you. Have a great Thanksgiving!
Posts: 1366 | From Southeast | Registered: Sep 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I am not there yet, but the answer is YES. People do get well. I would argue that the people that do the best have used a combination of ABX and alternative therapies. Personally, I do not believe that ABX alone are a solution, but there will be those here who will dispute that assertion. Visit my site (URL below). See the two doctor's protocols on the front page. Keep the faith.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Dalphia. Welcome! So glad you found us, though sorry you had to look us up.
There are lots of success stories... We've got a whole thread of em somewhere or 'tother!
I had Lyme a few years prior to diagnosis. Most of us on here went through many MIS-diagnoses first before figgerin' out the problem.
Until I ditched my neurologist-duck (that's our pet name for docs who refuse to consider Lyme despite evidence), I had been suffering with vicious headaches for over a year. Pretty much nonstop. I was ready for a frontal lobotomy.
After four-five months of treatment (various antibiotics plus one month IV) to knock down the spirochete load, I achieved recently a state of nearly normal.
I'd almost forgotten what life was like without a headache. It's pretty cool! Still working on the brain fog, memory loss, falling asleep throughout the day, etc.
Next, we attacked the "cyst form" with Flagyl. Which pitched me right back into headaches but which is a necessary evil, once again. But I know the drill by now, so I know it will get better.
Another couple months, with luck, and I'll have "kilt" off most every critter lurking in my brain.
Keep righteous about the probiotics, watch your sugar intake, and trust the process.
If you looked at the Board from a year ago you'd see many, many posters who aren't here any more!
Take heart and be well soon!
And what's the "FCC"? (Keeping in mindi we can't use doctor's actual names here, just their initials.. Is it a treatment center of some kind? I just keep thinking "Federal Communications Center" -- !!!??
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi, Dalphia!
I would consider myself to be in remission. I first had symptoms in 2001, and tested CDC-positive via Western Blot. It took me 3 months of antibiotics and the better part of a year for my body to rally that time.
I relapsed in 2004. A longer course of orals this time, and six weeks of Mepron/Zith for babesia really made the difference. I felt noticeably better right after that regimen, but it still took another 6 months to gradually get my brain and my energy back to pre-Lyme levels, so be patient.
I recently moved, and increased my work hours. I added a new job to my list. I feel able to multi-task again. I can concentrate more, rarely have "brain blips," unless I'm tired. I sleep normally, and wake up refreshed. My sugar levels don't seem to go up and down. I am not dependent on napping to get through the day. AND I lost those lousy 15 pounds that Lyme put on me. No way could I have done all that sick!
I feel strongly that no one can tell me I was depressed, it was all in my head, auto-immune, etc., etc. I was sick, and now I feel well. I may relapse again -- I try to watch the stress, diet, and rest to keep well.
There IS light at the end of the tunnel! I think that ten years from now, treatment protocols for Lyme will be quite different from where they are now -- but the LLMD's are on the right track.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
FFC, is the fibromyalgia and fatigue center. From what I have read they are very good in treating CFS and fibro. You know that the suffering that 95% of us here do is CFS/fibro derived from lyme. You can cotrol the lyme and still be sick with CFS/fibro. What really upsets me is my llmd is only treating me for the lyme. The only alternative drugs they have mentioned to me are acidophilus and fish oil. with the FFC they will treat evry issue you have. If I had insurrance I would be at the FFC in Atlanta monday morn. You have llmd's that believe in lyme, rhumys and id docs believe in cfs/fm and the ffc believe in both. I think your in good hands and you will be the first one here to be in remission.
Posts: 208 | From Greenville SC USA | Registered: May 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
I have several friends who were chronic and are now in remission.
Do not despair, many who get well move on and don't post any longer. There is hope so keep the faith.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
There's over 6,000 registered posters at this site, but only about 300 post at any one time. Why ? The other 5700 have gotten better and moved on with their lives.
Many who post here were ill with lyme for several years and never knew it. They were misdiagnosed, or not diagnosed at all. The disease took hold and their road to recovery is a long one.
The key to treating is getting it diagnosed early. The earlier it's caught, the earlier your treatment ends. My son went undiagnosed for 3 months, it took 10 months of abx to get him back to normal.
He's now doing diflucan for yeast caused by the abx. He's feeling like a normal 15 year old again, so we're hopeful that it's in remission for good. He's been abx free for about a month.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
There are indeed many who get well, remission or cure is hard to say. and they get well using a wide variety of treatments, from abx alone to many combinations.
mbroderick
Frequent Contributor (1K+ posts)
Member # 5220
posted
I'm posting for my son, Jordan, who was extremely sick for about 4 years. With 2 years of treatment, he is now going to college full-time and partying on the weekends! Who would have guessed!! It was a tough haul for him and, hopefully, he won't relapse anytime soon...
Posts: 2097 | From PA | Registered: Jan 2004
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posted
I would say I am! No abx since September. This is the second time of being off abx that long.[Actually, I was off about 4 months the first time.] Then I was bitten again last April, had GB surgery, hospital infection....then finally stopped abx at the end of August.
Be sure to read the success stories!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Yes, we do get well-it just often takes a while. After being sick for several years, my son too is almost well. He is on diflucan for almost wo months now. His grades went from mostly inconplete to all A/Bs. He went out for sports. He went rock climbing. Today he went paintballing. He is back to being a normal 17 year old.
My progress is very good too. I'm also now on diflucan after bing sick for several years too. I will probably do another round of the diflucan before we can call me in remission. I'm leading a pretty active life these days.
Posts: 1572 | From Pa | Registered: Jun 2001
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posted
Hi Dalphia, Yes, we do get better! I have had Lyme since 1987, didn't start treatment until Dec 2000. Last year I felt so good, I climbed Mt. Rainier with my son. I took 2 1/2 years of abx, to knock back the bateria level, then do maintenance using the rife technique, so I didn't have to continue with abx. I am not rid of Lyme, but work full time and can enjoy life!
So don't despair, get on with the treatment!
Posts: 546 | From Cascadia subduction zone | Registered: Mar 2002
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Hi there!!
Yes, people do get better. I'm one of them!! I just celebrated one year off antibiotics, and I was undxd for almost 10 years.
It's not a race, but if it were, the turtle would win - it takes time, and an LLMD who really listens.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Juli, Congratulations on your recovery. That is truly a victory and know you endured quite a lot to get to this point. Pray you remain in good health. Thanks for your post!!!!!!!!!!
Posts: 97 | From Tennessee | Registered: Nov 2005
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Hang tough!!
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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I'm about 80% better then I was a year ago. still some neuro symptoms and a little bit of pain but I'm on the road to recovery.
I agree, abx alone will not do it. I did a combination of both and have done very few abx since April.
Posts: 738 | From Colorado | Registered: Oct 2004
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posted
i was diagnosed with lyme back in the summer of 1991 after six months of symptoms and searching for answers. have been fine since treatment. i was one of the lucky ones.
my daughter was bitten in summer of 1999 and it took 9 months for diagnosis and treatment to begin. i am thrilled to report that she has been symptom free for over 2 years thanks to the wonderful treatment and guidance from Dr. Jones. in addition to 1,000 mg per day of abx, she did a total of 70 hyperbaric oxygen therapy treatments. Dr. Jones recommended we try this approach. this treatment is what ultimately got her to the point she is at today. there was a period of time when we actually thought we were going to lose her it seemed so bad. so don't give up fighting. people do get better.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
People in remission don't tend to hang around Lyme boards*)*!)! People do get into remission but if you have been sick along time it takes a long time and some people only get to a point where they are greatly improved even at 99.9% but relapse if they go off abx!!!!! (like me*)! But so worth it considering I was dying before*)*)! Now my quality of life is better than before I got sick (leads me to believe I had a "smouldering" infection*)!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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liz28
Unregistered
posted
I've been on Lymenet for two years.
I was disabled from 2000-2004 with what I thought was just an intractable case of Lyme disease, then started treating two co-infections, bartonella and babesia, after reading about them online. Also, I responded much better to stronger antibiotics than to weaker ones, even though some of the tougher antibiotics did prove too harsh to tolerate.
I went into remission this summer, lost the remission after taking a vasodilator called "vinpocetine" that increases oxygen flow to the brain (thereby knocking a lot of hidden bugs into the open), but am slowly getting better.
Now that I'm on antibiotics that I know, from bitter experience, can halt even the most aggressive relapse, I do stretching/yoga exercises that focus on the throat, chest, and liver, three hot spots where Lyme can sequester itself.
I've been on babesia treatment for 13 months, and while the drugs currently available in the United States cannot cure what I have, they can keep it suppressed. Right now, the buzz is that there are many new malaria drugs on the market, especially Riamet, that can have a greater effect on babesia. Since they ARE so new, the FDA is still in the process of approving them. But you will probably see them soon.
The bartonella treatment has been working beautifully for the past four months I've been on it. Since I had that co-infection a while, it will probably take extra time to get rid of, but people tend to get over it within six months.
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I just celebrated one year off antibiotics, and I was undxd for almost 10 years.
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