Hi, I'm new here, some of the ladies off of another board said to come here, so maybe some of the stuff I say might sound redundant to them. Maybe I should introduce myself? I'm Vanessa 27 years old, from Tampa and I have a 2 year old son who is my world. I got a bite right on a solid tattoo on my very lower back (tramp stamp, anyone? ) and we couldn't tell what it was, I blew it off. I found this bite in early January. According to Lyme disease standards, I might have gotten this bite either in late Nov or Dec, putting up or taking down Christmas lights. This bite didn't seem like a normal bite, even though it was covered by a tattoo. It took a while to heal and it was fleshy or oozy....yuck. I thought nothing of it.
A week or two later (still not thinking at ALL about the bite), I found a swollen inguinal lymph node that was very painful. The node just got bigger and bigger. Late March I started having weird sensations in my neck, I felt like the nerves were on fire, almost like a sunburn. I didn't want to move my neck. It is hard to explain, I wouldn't at that point say it "hurt" but it felt incredibly funny and the feeling of it worried me sick and I could NOT stop thinking about it. I went to a chiropractor, they did x-rays...nothing wrong. I forgot to add that I started having headaches a lot after the bite but thought they were stress related because by then I was being referred to a surgeon to make sure my swollen lymph node wasn't Lymphoma. Yes, I was very tired and run down, still am. Back then, I thought it was stress. I had my lymph node taken out in April, not Lymphoma.
Until a few weeks ago, I never knew much about Lyme except for my husband had it when he was a little boy. He had the bull's eye rash on his arm and was treated quickly and is fine. I was looking up stuff about my neck sensations and PN, just grasping at straws trying to find out why my neck hurt/bothered me so much. It was never the bones in my neck...the best way to describe it is the nerves or skin on my neck! Anyway, on this message board this guy said that he had PN but he suspected Lyme disease was the cause.
So, I looked up Lyme disease. I didn't recall being bitten by a tick but I did have that weird bite on my back that made my lymph node swell up SO big that I had to get it removed (it never ever went away....they say swollen lymph nodes should go down in 2-4 weeks....mine was eternally big).
I have soooo many of the symptoms. I have a constant SORE throat that doctors think nothing of and constant pressure/popping/pain in my ears that doctors think nothing of. I have trouble sleeping. I am tired all day. I wouldn't say I feel "sick" but I always feel run down. I had my first panic attacks....and that was after I found out that I didn't have ovarian cancer or Lymphoma.
Then....in the past week or two. I started getting numbness in my extremities. My hands feel clumsy. I have pins and needles in my feet and hands and sometimes it spreads throughout my forearms. It moves from place to place but these sensations are NEVER absent. My jaw feels weird. I have complained long before I read about Lyme Disease about my right side ribs being "sore" or feeling weird...so when I read that symptom, I really started getting suspicious. I have terrible burning, stabbing pains in my collarbone of all places. These things weren't there before.
I went to my primary care doctor with my bite and she totally blew me off. My CBC came back normal but she never ran a Lyme test, nor mentioned it, and that was back in Jan. I switched doctors recently and went to a new one about my symptoms...my neck feeling weird/painful (now I have sharp shooting, stabbing pains in the sides of my neck)....he told me it was anxiety. The Xanax does help but when it wears off, it comes right back. I kept coming back and I got a nurse practitioner one day because he was busy (I can't tell you how much money I've spent between now and Jan on doctors)and I told her about the bite and she ordered the Elisa and Western Blot. She called me and said that I tested positive for the antibody and for band 41 but that was it.
Before we got the results back she started me on Doxycycline 100mg twice a day....and I am still on those. And that's where I am at. I have spent so much money, now I want an LLMD and I've already depleted our little savings account and credit card with co-pays and medicines. I've been to psychiatrists, psychologists, rheumatologists (sp?), chiropractors, not counting the millions of times I was at my normal doctor's office begging for someone to help me. Oh yeah, and hypnotists.
I've probably spent around $1,500 and $2,000 for all of this. I've got a son of my own who is 2 like I said, and I have a step daughter who is mine full time, her mom left when she was a baby, so I've pretty much always been her mommy and I'm married. The worry and the physical stuff has worn me down so much. My life doesn't feel real any more. I can't do the things I want. I am already anxiety prone and because of the previous health scares...I've turned into a real hypochondriac. Having ALL of these weird things wrong with me makes my anxiety worse. I am on Prozac but quit taking the xanax, however, I'm not sure how long that will last. I don't want to take it but it does ease my symptoms.
My only theory for that is that possibly the bacteria has entered my brain/CNS and the xanax calms it. I have lots of neurological pain, I have brain fog (I can't even type or talk like I used to), and I have lots of "pins and needles" everywhere.
A few days ago my body started to twitch and then my face decided to join in, which has REALLY freaked me out. However, my doctor wanted to try Lyrica for my neck pain and 3 days after taking 150mg/3 day (that's a lot....they didn't even slowly get me to that) my twitching started. I am going to STOP the Lyrica and hopefully the twitching will stop...I read that was a side effect. I hope that's all it is.
Of course the hypochondriac in me says I have a brain tumor. But as I read more about Lyme, it just makes sense. Especially the bite....and the huge lymph node that never went away....then a few months later my neck started feeling weird, then after that hurting, and then the numbness, the sore throat that never goes away, etc. Who knows. I need answers though so I am trying to get an LLMD but they seem few and far between and very pricey. I am tired of living this way. It's not living.
I actually have lots of questions for everyone but I will try to post them gradually. I just wanted to introduce myself before I attack you with my inquiries. I know this is the "questions" forum and this post was originally going to be a neck pain question, so I guess I will ask it...so this long post doesn't get deleted for being in the wrong section or something....
I've heard lots of people complain about neck pain (not necessarily on here but other places) and I was wondering how would you describe it, if you have neck pain??
Mine is weird, that's why I am wondering if it's even LD sometimes. It's my skin or my nerves, they feel like they are on fire (sometimes it goes up my jaw), to the point that I don't want to move my head because it hurts more. The actual BONES in my neck don't hurt and I was wondering if anyone else can relate to this??? My neck is my chief complaint. It reallllllly bothers me. Like I said, x-rays show nothing wrong.
Anyone else relate?
P.S. Nice meeting everyone, hope you don't mind if I stick around! Posted by Michelle M (Member # 7200) on :
Hi Vanessa!
Well, that's a nicely organized howdy!
Sure sounds Lyme-ish to me.
If you'd had a GOOD lyme test from a GOOD lab, no telling what bands woulda come up positive!
'Round here we use IGeneX, which tests MORE bands than the others, and doesn't omit the REALLY important bands (31 and 34) like the other labs do, and uses multiple tick strains.
Also, your docs don't know nuthin' bout testing for coinfections, which can knock you for a loop.
Most of us have been down the "multiple do-nuthin' doctor" highway. Sorry you've been there, done that.
Any chance of you posting on the "Seeking a Doctor" board?
Your symptoms do sound suspicious.
Low dose doxy rarely fixes you, and usually only succeeds in confounding further lyme testing.
I'd be hunting up an expert, were I you.
And ticks quite happily chew on people during ALL months of the year. 'Specially in Florida. I like to photograph them and I've photographed some real beauties while there was SNOW on the ground! So don't believe any tales of how you can't get it in Florida, or how you can't get it in January, blah blah blah. Just cover your ears and smile nicely and move along.
You've come to a great place for help!
Spend lots of time reading the newbie links. BettyG will be along shortly to heap you up with some good reading material. Spend lots of time till you know more than your docs (p.s. don't worry, this really isn't very long. :-) )
Hugs,
Michelle
Posted by AZURE WISH (Member # 804) on :
WELCOME!!
You really should find a lyme literate dr. It is the best way to rule tbds in or out. Besides lyme, ticks can carry other infections (coinfections). So , it is best to be treated by a llmd.
If you post in the seeking a dr someone will pm you with a drs info.
best wishes Posted by Chloe07 (Member # 15663) on :
Definitely could be Lyme disease or a co-infection. Either way, no harm in seeing an LLMD and having IgeneX and better bloodwork done Your location is Tampa, FL?--The best LLMD in FL is in Tampa--Maybe it's a sign, lol. If you need contact info, message me.
![[Smile]](smile.gif)
) and we couldn't tell what it was, I blew it off. I found this bite in early January. According to Lyme disease standards, I might have gotten this bite either in late Nov or Dec, putting up or taking down Christmas lights. This bite didn't seem like a normal bite, even though it was covered by a tattoo. It took a while to heal and it was fleshy or oozy....yuck. I thought nothing of it.![[hi]](graemlins/hi.gif)