How long do you suspect/know you had Lyme Disease before a diagnosis was made?
How much time elapsed between a diagnosis being made, and proper treatment being started?
How long have/had you received treatment?
Do you consider yourself "cured"? Do doctors consider you "cured"?
What kind of treatment plan did/do you have?
Posted by Kara Tyson (Member # 939) on :
I had Lyme for about 8 months before being diagnosed.
I received treatment for almost 5 years.
I consider myself in remission. The Doc thinks I am most likely rid of it.
I took all oral antibiotics. Mainly Zithromax but I tried a few others (including Zyvox). The last drug I took was Ketek.
Posted by lyme_suz (Member # 7628) on :
Hi MaFunk,
You really have your hands full.
I really think antibiotics would help you a lot. Seems like a regular doc would give you some til you can get to lyme dr. There are cheap ones that are effective for many. If money is an issue. Just my 2cents. Your symptoms sound serious not to get dramatic.
Suz
Posted by Michelle M (Member # 7200) on :
Hello MaFunk.
I have had Lyme for about three years.
It took me about a year to get diagnosed (at least partially MY fault for not figgerin' it out...I saw the tick and the rash but didn't think we had Lyme around here and didn't connect the dots). May NEVER have figgered it out if hadn't been for smart radiologist whose report said 'multiple brain lesions consistent with Lyme disease.
I've been in treatment for going on five months.
I've gone from positively wretched to WORLDS better, though still have a ways to go. I'm figgerin' on a few more months (just added Flagyl this month) then gonna finish with Mino.
As Suz points out, many treatments are out there which are NOT expensive. Doxy ain't fun but works great and is cheap. Same goes for Amoxicillin + Probenecid...high doses cross the blood-brain barrier where inflammation is present and work wonders at relatively cheap prices. For me it gave me the worst herxes of all, even more so than IV Rocephin!! A couple months of that can knock down your Bb load tremendously without slaying your finances.
I've read your posts and worry about you too. The naturopathic stuff is good for supplementing but you really must start hitting the bugs with something more powerful so you can begin getting better. And you WILL get better!
Please get SOME doc -- any doc -- to help you.
Hang in there.
Michelle
Posted by Biting Back (Member # 6018) on :
Had the classic bullseye rash and actively sought a diagnosis for 21 years. Have had lyme since I was 5 years old, but not counting the earlier years.
Treatment was initiated at diagnosis, about a year ago.
Not cured or in remission, but responding to antibiotics.
Currently use IV claforan, but have taken (and will continue to take) typical oral antibiotics for lyme and co.
Posted by Lymetoo (Member # 743) on :
I believe I've had Lyme since I was about 8 yrs old....could have been born with it. So that makes it 46 yrs, going on 47.
I was dxd 5 yrs ago and have been taking abx the entire time up until last November. Was off for 6 mo then was bitten again and had to go back on. Currently off abx and doing pretty good.
I've taken every oral abx known to mankind....except ketek.
Cured? I doubt it.
Posted by Andie333 (Member # 7370) on :
Hi, Ma!
In 1996, I had a tick bite and bulls-eye rash. I went right to the doctor's and was given a 10-day treatment of abx. The rash disappeared, and I figured I was fine.
Over the next 9 years, I had a variety of worsening medical symptoms and was sent from one specialist to another.
I was MRI-ed, X-rayed, biopsied, poked, tested, prodded. Finally, doctors concluded I was okay. At that point, last spring, I was shopping for canes, couldn't think straight, felt paranoid and was completely and totally exhausted. In all that time, nobody tested me for Lyme.
It was my acupuncturist who suggested I look into a systemic cause, and she encouraged me to look into Lyme Disease.
I hadn't heard much about it, figured it was relatively benign and unlikely...but I did check. The more I read, the more convinced I became that Lyme was the root cause.
I found a really good LLMD in June, started taking oral cefzil and tested CDC positive. I'm also taking a variety of herbs and using the detox foot pads.
I am nowhere close to well. In fact, as precdicted, many of my symptoms have gotten worse, and some ( mainly neurological) have seemingly come out of the blue.
I am hopeful that I can (and will) have a healthy recovery. Yesterday, though, I felt a lot more discouraged...
Andie
Posted by deliellie (Member # 8069) on :
THE DR.S HAVE DX'D ME WITH EVERYTHING BUT LYME. I'VE HAD A TERRIBLE FLAREUP OF L.SIDED CRANIAL NEURITIS, L.PHOTOPHOBIA & L.HYPERACUSIS. I SPENT 6 WKS. IN MY BEDRM. WITH SUNGLASSES & AN EAR PLUG. AFTER EVERY TEST POSSIBLE EXCEPT SPINAL TAP, DR. GUESSES BELL'S PALSY!!! TREAT W/ NEURONTIN. DIDN'T WRITE B.P. ON DX SECTION. HELP,PLEASE & THANK YOU VERY MUCH.
Posted by HEATHERKISS (Member # 6789) on :
![[group hug]](graemlins/grouphug.gif)