Lyme Disease

[mommy2allgirls]

Does anyone on this board have Lyme's Disease?

 

[bookwormde]

I am from the mid Atlantic so I know lots of people who have had it including my brother, what do you need to know.

bookwormde

 

[mommy2allgirls]

I just want to know the signs and symptoms and what they did for treatment. I believe I might have gotten it a year ago and am still undiagnosed. We went to Arkansas with friends and around the same time their little boy started to have weird symptoms and I started to have pregnancy issues. He was later diagnosed with Lyme and now a year later I still have no diagnosis. My doctors blow me off when I tell them the story

 

[greenpea89]

Our youngest daughter had Lyme. Her first symptoms were a fever, headache, exhaustion, she wasn't eating well, and her lymph nodes were extremely swollen. It progressed fairly quickly to neurological symptoms - she was forgetting vocabulary and losing her ability to read, her eyesight was blurry, her balance was off, and she felt that someone was touching her head when they were not. Our daughter also complained of joint pain in her knees (in particular one knee) and her knee was swollen and warm. She developed the typical bull's eye rash around the bite site in her scalp (they found the head where she had scratched the tick's body away - which is why we didn't know it was there). When we took her to the hospital she was placed on IV antibiotics immediately. An hour later her fever was gone and by the next day most of her neurological symptoms were gone too. She was on IV antibiotics for 7 days. She was on an oral antibiotic (amoxicillin - she is too young for the typical stronger antibiotic usually prescribed for Lyme) for 60 days after that and was followed up by her doctor each week. It took almost the entire 60 days for her to overcome the exhaustion (she could only go to school 1/2 days and she would nap each day after school, falling asleep again at about 6 at night - sleeping for about 12 hours each night), her lymph nodes didn't go down until after she finished her oral antibiotics, and she still has some pain in her knee when she is tired (we are post 5 weeks from completion of her antibiotics course). Her symptoms appeared VERY quickly - within days of the bite. Hope that helps you a little bit and provided some of the answers you are looking for to help you.

 

[bookwormde]

If you remember the bite, typically you would have had a quarter to silver dollar size red ring around it with the area inside it a little whiter than typical.

This far out achy joints and fatigue are common and in more severe cases the symptoms can be quite broad and varied.

As said antibiotics are the most common therapy, but boosting your own immune system is also very important for “fighting it off”. My brother went thought 2 series of antibiotics with limited success, but after adding some high potency/quality vitamins (celated ?sp) he was better very quickly.




bookwormde

 

[OneLittleSpark]

I don't have Lyme's myself, but I'm on a forum for invisible disabilities, and there are some people there with Lyme's. It's called But You Don't Look Sick, and it's got a really good community. They would be able to answer just about any question you had! There's also Lyme Friends, which I've heard good things about, but never used.

The only other advice I have is to keep pushing your doctors, until they take proper care of you. Go in with specific tests you want them to run, if you have to; whatever it takes to give them a kick up the backside!

Hope this helps!

 

[mommy2allgirls]

I don't have Lyme's myself, but I'm on a forum for invisible disabilities, and there are some people there with Lyme's. It's called But You Don't Look Sick, and it's got a really good community. They would be able to answer just about any question you had! There's also Lyme Friends, which I've heard good things about, but never used.

The only other advice I have is to keep pushing your doctors, until they take proper care of you. Go in with specific tests you want them to run, if you have to; whatever it takes to give them a kick up the backside!

Hope this helps!

Thank you, those sites are wonderful! I am trying to get approved for the Lyme Friends and am on But You don't look sick, I just had no idea there was a Lyme forum there!

 

[OneLittleSpark]

Thank you, those sites are wonderful! I am... on But You don't look sick, I just had no idea there was a Lyme forum there!

You're more than welcome, glad I could help! What's your name over on BYDLS? I'm the same name, and even have the same little hopping Figment. I generally hang out on Fibro board, but also wander around some of the more general ones.

Anyway, that was a random sidetrack, on with the show!

 

[mommy2allgirls]

You're more than welcome, glad I could help! What's your name over on BYDLS? I'm the same name, and even have the same little hopping Figment. I generally hang out on Fibro board, but also wander around some of the more general ones.

Anyway, that was a random sidetrack, on with the show!

I am caseylk over there. I used to post more about MS because for awhile that is what my doc thought I had.

 

[honugirl]

Several of my friends have Lyme. Don't bother with a Western Blot test. Look for an LLMD (lyme literate MD) to get an Igenix test (I think that's how it's spelled). It's supposed to be the better of the tests to accurately diagnose it. They are doing some alternative therapies in addition to antibiotic protocol. It seems to be working.

 

[zalansky]

Joining a little late, but I have Lyme's. Bullseye rash and everything, had the initial symptoms right away and went to my primary doc for a test. They said there was no lyme in Fl. HA! They agreed to test and lo and behold it came back positive. That was in 2006 and here we are. I now have a LLMD who confirmed the diagnosis with an Igenex test, and have been on several meds over time. It seems to flare up now and again when stressed etc - but like someone else said, keeping the immune system strong is important. Its horrible to have, no one thinks its a real disease.

Feel free to PM me anytime. How are you doing OP? Another good site is www.lymenet.org

 

[mommy2allgirls]

Joining a little late, but I have Lyme's. Bullseye rash and everything, had the initial symptoms right away and went to my primary doc for a test. They said there was no lyme in Fl. HA! They agreed to test and lo and behold it came back positive. That was in 2006 and here we are. I now have a LLMD who confirmed the diagnosis with an Igenex test, and have been on several meds over time. It seems to flare up now and again when stressed etc - but like someone else said, keeping the immune system strong is important. Its horrible to have, no one thinks its a real disease.

Feel free to PM me anytime. How are you doing OP? Another good site is www.lymenet.org

I have Lyme, babesia, and bartonella. I am currently seeing an LLMD and am on treatment. I have learned alot about this disease and hate all of the controversy over it. I now have a lyme blog I update and I post videos on youtube. I am also on lymenet already. I am caseyk over there!

How are you feeling?

www.mylymediary.blogspot.com

http://www.youtube.com/user/TheCaseylk

 

[Forevryoung]

I was diagnosed a little over 2 years ago while I was in graduate school. I have a history of depression so they wrote all my symptoms off to that, then I swore up and down that I wasn't depressed so, they told me it was fibromyalgia....

oh it was a long and horrific road. I nearly dropped out of graduate school because of it. Yes, I had some pretty severe neuro symptoms to the point where I DELETED my Thesis I was sleeping 18+ hours a day which wasn't so compatible with taking 14 graduate credits, seeing clients, and doing 15 hours of research a week

I took the 60 days of antibiotics and haven't had any problems since although it was 3 months of hell before diagnosis. I actually wonder sometimes if that's why I have joint pain (knees mostly)

 

[zalansky]

For a long time, I dealt with neuro issues too. Lots of twitching all over, tingling in fingers and toes, even a few panic attacks and I have never had them before. (a nuerologist also told me it was anxiety) My LLMD suspected Bartonella and put me on Rifampin and Levaquin. It helped a TON. Not to say I don't get a tingling finger every now and then but what a difference! Knock on wood.

Now, I have knee problems as well. They started making crunching sounds when I bend or climb stairs and will hurt if I go out dancing etc. Went and had x-rays and sure enough now have arthritis in my knees. So I need to follow up on that because I am only 41.

My sister lives on Long Island and had been previously diagnosed with Lyme as well. She was on meds but a short course and thought it had gone away. I have been telling her for years it never goes away, she has been experiencing lots of symptoms and is finally seeing a LLMD today after waiting for so long to do it. Its an awful disease. I just wish they could find a cure, for good.

 

[Forevryoung]

Now, I have knee problems as well. They started making crunching sounds when I bend or climb stairs and will hurt if I go out dancing etc. Went and had x-rays and sure enough now have arthritis in my knees. So I need to follow up on that because I am only 41.

My sister lives on Long Island and had been previously diagnosed with Lyme as well. She was on meds but a short course and thought it had gone away. I have been telling her for years it never goes away, she has been experiencing lots of symptoms and is finally seeing a LLMD today after waiting for so long to do it. Its an awful disease. I just wish they could find a cure, for good.

I'm on Long Island too. And my doctors that I was seeing were here and in PA, you would think that it's common enough here that they would be a tad more knowledgeable. Does your sister like her LLMD? Can you PM me their name just in case? Thank you!

I'm 25, I definitely worry about having recurring symptoms that I brush off or attribute to an unrelated event (like your arthritis and neuro symptoms).

 

[darthspud]

For a long time, I dealt with neuro issues too. Lots of twitching all over, tingling in fingers and toes, even a few panic attacks and I have never had them before. (a nuerologist also told me it was anxiety) My LLMD suspected Bartonella and put me on Rifampin and Levaquin. It helped a TON. Not to say I don't get a tingling finger every now and then but what a difference! Knock on wood.

Now, I have knee problems as well. They started making crunching sounds when I bend or climb stairs and will hurt if I go out dancing etc. Went and had x-rays and sure enough now have arthritis in my knees. So I need to follow up on that because I am only 41.

For the longest time I wrote off a lot of these same things as just that was just what my body does... but I recently fell down a flight of stairs and got a referal for an ortho and they did some xrays and said it was arthritis in my knees but they would do a few blood tests and one of them was for Lyme disease its been a week and I still havent heard anything... I never really thought much about it until I came across this thread... Is there something that I should push for test wise? I'm only 27 and the xrays showed that my left knee was one that you would typically see in some one in their 60's...

 

[zalansky]

darthspud - do you know what kind of test they ran on you for Lyme? Many times, the tests can be negative but you can still have Lyme. I was lucky that both tests I had for Lyme were + so there was no question. Plus I had a bullseye rash so I know when i got it. I am glad the doctor you saw pushed to test for it. Just curious - did they say they could treat the arthritis?

You'll have to keep us posted. What other symptoms have you had? You're definitely too young for all that. Good luck.