posted
Hello, this is my first time posting. I have many, many questions and blank spots surrounding my Lyme diagnosis, however first and foremost, has anyone actually gotten well after all this? I mean feel better, resume energy level? etc?
Please let me know if there is an end in sight, ( with treatment of course ) .
Thank you, Kelly
Posts: 2 | From Maine | Registered: Sep 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Hi Kelly,
Sorry to hear you were diagnosed with lyme. Welcome! Lots of good information and very friendly people here.
I was diagnosed in May but think I had lyme since late last fall. I was really sick from January to May. So far, I have improved almost to 90% on most days.
And I have been on continuous abx since May. And I consider myself very lucky than most that I have recovered so much in this short time!
Usually, the longer you have had lyme, the longer you will have to be treated.
When were you diagnosed? Have you seen an LLMD? Are you on abx? What type of tests and what lab did them?
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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I've had Lyme, bart, and babesia for the past 2 years. It took 6 months for me to get a diagnosis. After getting the diagnosis the abx gave me slight relief, but nothing great for about 6 months. So for a year I didn't think I was going to make it. After a year of absolute pain and agony I changed doctors and things have been getting better ever since. Make sure you have a good LLMD someone other people on this board can certify has helped them. My original doctor told me he was an LLMD, but after speaking to some people on this board I found he didn't know what he was doing.
I'm now at 80%+ most days with bad days still being bad. I do see a light at the end of the tunnel. My current LLMD says at the rate we are going I may be off the abx by the end of the year. Hoping for a brighter future for you and me.
Hang in there Posts: 158 | From Santa Monica | Registered: May 2007
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I think everyone has a good chance at recovery and the wrose thing you can do is lose hope.
I had Lyme for at least 18 years before I got diagnosed so yeah I'm a tough case and probably not the norm.
I've been on abti-biotics for going on 7 years now and while I get my moments, I'm still pretty messed up and have been on disability now going on 7 years.
I myself will never give up and will always fight the good fight! Positve attitude is something that is very hard to do and every once in a while I have what I call a "poor me day" where I get all sad and everything but then it's back to the positive.
I worry more about how it affects the life of my Wife and the people around me then it does me and try to put myself in their shoes once in a while to get a good perspective of both sides.
Hang in there and never surrender to this disease!
Steve
Posts: 406 | From Rhode Island | Registered: May 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Yes, Kelly, Yes. Most of us here on the board are still in the thick of things, so you don't hear so much from those who are done with the whole thing.
I have had lyme for 20 plus years, and am now free of symptoms. Life is better for me now than it has ever been.
I would be pain-free for the first time in my life, except for the heavy weight lifting and running (groan ) I'm able to be more active and fit now than I have ever been, and my mind is clear.
Hang in there!
-------------------- 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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posted
I'm another long-termer -- had lyme at least since 1988, and wasn't diagnosed or treated until 2005. I'm at about 70% most days, some better, some worse, with the occasional hit-by-a-truck day or two... still symptomatic, but functioning really well! I'm working, and going through a grueling art school grad program... and holding tough doing it.
Don't, don't give up hope -- I was well on my way to complete disability a couple of years ago, and now I honestly do have my life back. I still have my struggles, to be sure, but it is better than I thought it would ever be.
Good luck to you in your journey.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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I haven't been on this board in over 4 years..YES! it does end...the lyme will eventually go dormant in your systema and you will need to eat right and keep your immune system strong to keep in in check.
I had lyme for 16 years undiagnosed...passed it to my son in utero also...so we were both being treated for babs, bartonella and lyme. We were both treated with oral abx..not IV...sometimes up to 3 at a time..one was always plaquenil to help the abx get into the tissues/cells. After about 2 years of this, we went to an acupunturist/herbalist who combined acupuncture treatments '/ and herbs along with our abx until we were able to eliminate the abx all together and just go with the alternative treatments.
We had it very bad. My son had no memory, not much cognitive function, dyslexia and some other learning problems when diagnosed at age 7. I had night sweats, joint stuff, memory stuff, seizures, tremors, heart palps and the list goes on and on...trust me..we were very ill. HErx's were awful for the first few months..hot baths with epsom salts and sweating out the toxins helped them along with lots of lemon water and a more alkaline diet. Stayed away from all sugar, alcohol and carbs. And made sure we walked or did some exercise even on our sickest days.
Today my 15 year old son is thriving! He is a sophomore in high school in all honors classes. The lesions that showed up on his neurospect scan that was run in the heart of the treatment are now all gone. He is doing great at school, socially, no more anger outburts. Occassionally if we do too much, or are very stressed (during midterms and finals last year) I noticed he got a few of his old symptoms back..but I made sure he kept his immune system strong, and that he got enough sleep and he bounced right back.
We are both doing great! I recommend combining abx with alternative treatments, like herbs for lyme and acupuncture..I swear this combo is what got us well.
I run a support group now, and get aobut 50 calls a week about help...still very active. But working full time, feel great..and thanking my lucky stars!
Don't ever give up hope..I was horribly sick..and needed this website for many years...it is a wonderful warm place with many very knowledgable people.
Best, Lisa
Posts: 14 | From Rhode Island | Registered: Sep 2008
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) I'm able to be more active and fit now than I have ever been, and my mind is clear.
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