posted
have had neurological symptoms for a year=muscle twitches calfs of both legs, pins & needles & burning in feet, legs, back, face & stomach, air hunger, sensitive to sound, very hungry. Diagnosed with LD in march 2006, took doxy & flagyl for 4 months, now doxy (200 mg 2x day) & alinia (500 mg 2x day). Anyone else with similar symptoms/treatment? Not showing any improvement yet
Posts: 213 | From ohio | Registered: Jul 2006
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Carol B
Unregistered
posted
Hey BV- I was confirmed for the second time in March 2006. I expect to be treated for a while longer, but this disease requires a great deal of patience. A lot has to do with how you personally respond to treatment, and what co-infections you may be dealing with. No hard and fast answers here.
It is my impression, that I will be treated for a year, then given a chance to see how I do off abx treatments. Somedays I feel better , then some days I feel like I am back at square one. I can also feel remarkably well for a period of time each day, then suddenly feel like I am at death's door.
My LLMD considers me "improved"-but duration of treatment is "unknown". Anyway this board is a great way to pass the time while healing-Welcome.
It's a bit overwhelming at first-but just dive in and ask any and all questions you may have.Someone will respond. And you'll get different perspectives.
I'm on Ceftin and Minocycline currently-and a ton of supplements- including SAMe and Acetyl L for brain fog. I also go to a neurologist for neurological issues- I hope to educate him about Lyme Brain since he's a lame brain about Lyme.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by bv: have had neurological symptoms for a year=muscle twitches calfs of both legs, pins & needles & burning in feet, legs, back, face & stomach, air hunger, sensitive to sound, very hungry. Diagnosed with LD in march 2006, took doxy & flagyl for 4 months, now doxy (200 mg 2x day) & alinia (500 mg 2x day). Anyone else with similar symptoms/treatment? Not showing any improvement yet
Hello, BV! And a big welcome. Not that you'd WANNA be here, necessarily.
You sound awful co-infection'ish to me! Air hunger is a babesia symptom; some of the other symptoms sound like bartonella.
Doxy and Flagyl is a rough course! Poor one! Whew! Either one alone makes my heart quake with fear and loathing! Together, I'm runnin for the hills! You've probably been in one long, continuous herx for the past four months.
Tell us your coinfection status, please? Maybe then we can make some guesses? However, keep in mind that when you're really sick, and especially with the neurological stuff, it can take six months PLUS to start creeping toward improvement. It did for ME. Now, at a year, and AFTER discovering I was positive for Babesia WA1, I am starting to go "Ahhhh, OK, NOW I'm getting better."
But for a while there, it took a LOTTA faith!!
Let us know more. Gotta LLMD?
Michelle
PS Carol, I love the lyme brain vs. lame brain analogy. Excellent!!
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I have similar symptoms.My calfs ahve been going( twitching ) for 5 months !! Other places also. When the phone rings I jump and now have back and deep muscle pain. On Doxy for 12 weeks...Hoping !
Posts: 355 | From NY | Registered: Jan 2006
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posted
Welcone BV I have all the same symptoms, plus a few more. You will find that your symptoms may change as you progress, I know mine did. I was dx in August 2004, but had symptoms for some time before that (you think I would have learned the first time I got Lyme, but the symptoms were very different the 2nd time). Try not to set any time goals, it's very different for everyone, but patience and postitive thinking have my motto through out. It has helped me through some rough spots, make no mistake Lyme is a tough opponent, but with a good LLMD and support here and at home you can do it. Good luck
Posts: 69 | Registered: Jun 2005
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I'm from Ohio too. I also have all the twitches, burning,pins and needles etc.... I've been on treatment for about 5 months now. somethings are better and some things are worse. I was first treated back in the early 90's after bullseye rash, neuro problems etc...I saw absolutely no improvement until 4 months of treatment.
Did you get lyme in Ohio?
Patti
Posts: 340 | From Ohio | Registered: Oct 2005
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posted
Hi Pattilynn, Yes, I got LD in Ohio. Most likely on the golf course. I remember three large welts (dot in middle & large reddish circles around them) two years ago. I assumed mosquito bites. Maybe, & maybe ticks. My doc says it is logical that mosquito bites could cause LD as both mosquitos & ticks are blood suckers etc. My Doc tested me for brain tumors & cancer before the LD diagnosis. Right now I am relieved that I have a definitive diagnosis & a treatment plan. Also very glad I found this site.
Posts: 213 | From ohio | Registered: Jul 2006
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LostCityAgent
Unregistered
posted
Consider trying LDN (goog it) to get the lesions under control.
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