It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lyme Disease Message Board


Lyme Disease Board Index


New here...My story
Nov 21, 2005
Hi folks,I was bitten by a tick in 2002.Woke up with a fever of 104,severe headache,stiff neck and throbbing leg muscles.Went to the doctor who gave me 10 days of doxy (100mg 2x dailey.)Everyone at work was amazed I was only given 10 days doxy.Some were given 3 weeks,some 30 days when they had it(I live in a Lyme infested area Cape Cod.)My symptoms cleared up and I was fine.The next summer 2003,I had a rash on my arm where I pulled a tick off me.Again went to the Dr. who gave me 10 Days Doxy.After 4 days he called and said the test for Lyme was negative so no need to finish meds.Summer of 2004 I started having weird twitching in my legs and feet which eventually spread all over.Also has muscle cramps and spasms(I could actually see my leg muscle twisting under my skin!)I went to the Dr. and was tested for everything including Lyme again,NOTHING! Everything came up negative.The Dr. refered me to A Rheumetologist who declared I had Fibromyalgia and offered me antidepressants to raise my serotonin levels,therefore I won't feel the pain so much.I threw that prescription away and figured I'd just live with it seeing I'm negative for everything life threatening.I always beleived that this was Lyme related but couldn't prove it.
This was april 2005.By August I had a permanently twitching lower right eyelid.It just pulsated constantly. I read that this usualy goes away on it's own but after 2 months I got real worried.I put myself on 2 weeks of doxy that I had, and went to the doctor to try to convince him to give me more as I noticed that my neck,knee and shoulder pain had dramatically decreased after being on Doxy.He gave me 4 weeks and said THATS IT!(He doesn't beleive in longterm antibiotics,which obviousely caused me this illnes).After 2 week more on Doxy,the twitch went away!The eye does twitch when I get out of the shower for about 5 minutes then stops.The Dr. refered me to a neurologist for the twitch.I insted went to an infectious disease dr. who ordered an MRI.They called the next day to say the mri showed "something on my brain stem!" After freaking out I was sent to Mass. General in Boston.The Dr.'s there said they think i have 2 different things going on.They think I may have lyme or some other co-infection,or central nervous system infection and should go on IV antibiotics(i've been in picc line 2 weeks now).They think they just happened to find an "abnormality"incedentally.They said it could be a tumor,lesion,or something thats been there since I was a baby.It's the size of a pea.Even the spinal tap showed no Lyme(or tumor cells thank GOD!).So Ive been on Doxy now 100mg 2x day since the end of August until 2 weeks ago when I went on the IV.I forgot to mention,I got the rest of the doxy from the vet! It's amazing,they'll treat a dog for 4 months but not a human!!! In 2 weeks when I get off the iv i WILL SEE A LYME LITERATE dR. finally!!!I booked with this guy in July and couldn't get an appointment till Dec.Hopefully he will continue my treatment with oral antibiotics as i'm feeling really good,but the twitching muscles I still feel.So my questions are...
Do you think this "lesion" on my brain stem is Lyme related??Dr.'s in Boston don't know what to call it but arn't willing to poke around my brain stem to find out.It could be just mild swellin also.Has anyone had this?
Do you think I should just continue treating myself with Doxy after this IV is over?How much and how long??
Does anyone have or had the eye twitch? What's the connection with the hot shower making my eye twitch?The dr.at Mass. general asked me if my symptoms got worse after a shower.I told him yes,and he said many people with nervouse system disorders report this but he doesn't know why? Thank you for any advice you can give,I'm SO grateful I found this site with others trying to solve this mystery disease!!I've felt very alone in my quest for truth and health!
so sorry you have been through such an ordeal - it makes me NUTS! and to think that this is from docs in a lyme infested area of the country!

I strongly encourage you to seek out a LLMD (Lyme Literate Medical Doctor) asap. Most labs are set up to test for lyme and the average doc will use those tests and run with it... a llmd will not rely soley on testing anyway but it is a good idea to go through a lab like Igenex out of Californinia.

From what I understand, lyme seldom shows up in spinal fluid... and I'm not familiar with your brain lesion, but have read that many brain lesions caused from lyme do disappear after treatment.

There are many strains of lyme and some people have serious central nervous system damage from untreated/undertreated lyme... get to an llmd...

and keep us posted on what you find out... hang in there! carol
[QUOTE=mesmall]Hi folks,I was bitten by a tick in 2002.Woke up with a fever of 104,severe headache,stiff neck and throbbing leg muscles.Went to the doctor who gave me 10 days of doxy (100mg 2x dailey.)Everyone at work was amazed I was only given 10 days doxy.Some were given 3 weeks,some 30 days when they had it(I live in a Lyme infested area Cape Cod.)

My symptoms cleared up and I was fine.The next summer 2003,I had a rash on my arm where I pulled a tick off me.Again went to the Dr. who gave me 10 Days Doxy.After 4 days he called and said the test for Lyme was negative so no need to finish meds.

Summer of 2004 I started having weird twitching in my legs and feet which eventually spread all over.Also has muscle cramps and spasms(I could actually see my leg muscle twisting under my skin!)I went to the Dr. and was tested for everything including Lyme again,NOTHING! Everything came up negative.

The Dr. refered me to A Rheumetologist who declared I had Fibromyalgia and offered me antidepressants to raise my serotonin levels,therefore I won't feel the pain so much.I threw that prescription away and figured I'd just live with it seeing I'm negative for everything life threatening.I always beleived that this was Lyme related but couldn't prove it.

This was april 2005.By August I had a permanently twitching lower right eyelid.It just pulsated constantly. I read that this usualy goes away on it's own but after 2 months I got real worried.I put myself on 2 weeks of doxy that I had, and went to the doctor to try to convince him to give me more as I noticed that my neck,knee and shoulder pain had dramatically decreased after being on Doxy.

He gave me 4 weeks and said THATS IT!(He doesn't beleive in longterm antibiotics,which obviousely caused me this illnes).After 2 week more on Doxy,the twitch went away!The eye does twitch when I get out of the shower for about 5 minutes then stops.The Dr. refered me to a neurologist for the twitch.I insted went to an infectious disease dr. who ordered an MRI.

They called the next day to say the mri showed "something on my brain stem!" After freaking out I was sent to Mass. General in Boston.The Dr.'s there said they think i have 2 different things going on.They think I may have lyme or some other co-infection,or central nervous system infection and should go on IV antibiotics(i've been in picc line 2 weeks now).

They think they just happened to find an "abnormality"incedentally.They said it could be a tumor,lesion,or something thats been there since I was a baby.It's the size of a pea.Even the spinal tap showed no Lyme(or tumor cells thank GOD!).So Ive been on Doxy now 100mg 2x day since the end of August until 2 weeks ago when I went on the IV.I forgot to mention,I got the rest of the doxy from the vet! It's amazing,they'll treat a dog for 4 months but not a human!!!

In 2 weeks when I get off the iv i WILL SEE A LYME LITERATE dR. finally!!!I booked with this guy in July and couldn't get an appointment till Dec.Hopefully he will continue my treatment with oral antibiotics as i'm feeling really good,but the twitching muscles I still feel.So my questions are...
Do you think this "lesion" on my brain stem is Lyme related??Dr.'s in Boston don't know what to call it but arn't willing to poke around my brain stem to find out.It could be just mild swellin also.Has anyone had this?


Do you think I should just continue treating myself with Doxy after this IV is over?How much and how long??

Does anyone have or had the eye twitch? What's the connection with the hot shower making my eye twitch?The dr.at Mass. general asked me if my symptoms got worse after a shower.I told him yes,and he said many people with nervouse system disorders report this but he doesn't know why? Thank you for any advice you can give,I'm SO grateful I found this site with others trying to solve this mystery disease!!I've felt very alone in my quest for truth and health![/QUOTE]





All times are GMT -7. The time now is 08:48 AM.





2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!