posted
Wow. I never ever in a million billion years would imagine myself here. I have been sick for nearly a year. It didn't get really bad until January. It's been quite a roller coaster.
I finally got diagnosed with Lyme Disease yesterday. That call changed my life forever. Well actually the day I got bit by an infected tick changed my life.
Sigh. I don't know where to go from here. I feel hopeless.
It started in August. I felt lightheaded and had the worst cold ever. Now I think that was the flu-like symptoms associated with early Lyme. It went away and I was fine up until December.
Then I started to feel lightheaded all the time. That was a constant symptoms. Then in March I had horrific back pain. Then the scariest part was April when I started having heart problems: tachycardia, skipped heart beats, chest pain.
I finally saw a doctor. Nobody knew what was wrong. I did some research on my own and came up with Lyme. I knew it was far fetched afterall I live in Texas. It's not very common here. I told on of the doctors I saw about the tick and he brushed it off. He said that unless I had an EM (which I don't think I did) then I couldn't have LD.
A couple weeks ago I ordered the test from IgeneX. I can't tell you how surprised I was when I got called with the results. I was speechless. They even said it was the most positive test they had ever seen. Whatever that means!
So here I am. I was prescribed 1 month of antibiotics (minocycline). I just don't feel hopeful. The dr said it's near impossible to get cured, I can just mask the symptoms.
I wanted to have another child some day, but I don't know if that will ever happen. Will I have to deal with this the rest of my life? I'm pretty sure I've only had Lyme for less than a year. Shouldn't that mean it will be easier to get rid of? I'm so confused.
~Lauren
Posts: 248 | From Tejas | Registered: Jun 2007
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Vanilla
Unregistered
posted
There is lyme in Texas and I know there is at least one lyme literate doctor there. You need to get in to see one.
I went un-diagnosed for 16 years until 2006 and I am improving. My lyme specialist yesterday told me I may never get rid of the disease but we can be successful in keeping it dormant.
Welcome to lymenet and no reason to feel alone now that you have found this website.
It is not hopeless and many people do improve. Try to stay positive because that will help you too.
The positive side is at least now you know what you have so you can treat it.
Good luck and I hope your health improves quickly.
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tailz
Unregistered
posted
You have tons of friends here - don't worry.
Most likely you will need more than one month of antibiotics though.
Also, have you been tested for coinfections? If they are negative now, don't believe them. If they are negative a year from now, don't believe them.
Very few Lymies have only one infection. I'm still fighting for a positive on my coinfections.
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I am new here too. Ask as many Q's as you need to. Everyone here has been great and they have a ton of knowledge.
My only peice of advice is listen to your body. No one knows it as good as you.
I hope you feel well soon.....Melissa
Posts: 3905 | From USA | Registered: May 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
W E L C O M E !*)!*)*!)*! !*)!*)!*)!*)!*)!*)!!!!
If you check support groups there may be one near you*)!*! But if not, we are a support group HERE*)*)! An international, all-USA-states support group*)!!! WELCOME*)!*!
If you;'ve had it less than a year MOST docs would give you a GREAT prognosis!!! it is important not to waste time & to find a good Lyme Literate MD as we call them- so go to the Seeking Doctors column & find one*)!!!
I had a baby when I got Lymed and gave it to my baby through breastmilk or maybe even congenitally if I was already infected & didn't know it- but NOW I have another baby (well, she is over 2 now but still my baby*)! and she is not infected and very healthy. The older one has been infull remission for 6+ years now!!! LOTS of local Lymies have had babies and as long as you are on amoxicillin no one has been infected babywise!!! So don't worry- Life with Lyme is not a death sentence. With appropriate treatment people DO get better and you are still EARLY- don't waste time- get a doctor!!
And welcome*)!!!!!! Sincerely, Sarah in CA
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I'm glad you were able to diagnose yourself!!
You really need an LLMD and get an appt. before you run out of mino. One month will not be enough treatment ... and a doc who is not an LLMD will not treat you until you get better.
I have been in treatment since Jan. 20th and have made good progress every month.
There is hope, so don't think there's not. It's not nearly impossible to get cured ... unless you don't treat it long enough.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks everyone. You have made me feel a little better. I never knew such a horrible, evil, nasty disease existed. At least there is this board where we can all talk and relate to eachother. It makes me feel less secluded. Does anyone have list of lyme literate doctors in Texas? I really need to find a good one. I feel like it is my only hope. I'm going to go ahead and start the minocyline that was prescribed to me. I agree that I need more than that. I want to kick this bacteria in the a$$. It's going to regret ever infecting me!!!
Posts: 248 | From Tejas | Registered: Jun 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
post on the seeking doctor section for doctor referrals.
You can beat this ... you have the necessary attitude!
Don't fear traveling to the best LLMD for you. I fly to NY from Ohio to see mine.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Vanilla
Unregistered
posted
I was looking for a lyme specialist before for a friend and I emailed a nurse practioner in San Francisco who was from Texas. She told me there was one right outside of Houston. Let me know if you want his name by sending me a private message and I will try and seach for it in my email.
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Welcome!!!
Sorry to hear that you have gotten bit by the lyme bug. It is very important that you find a good llmd to help you diagnose and treat your lyme and posible co-infections.
The good news is that with proper medication and the right doc, you can get well and have healthy children. You may have to take meds for a while, especially while you are pregnant, but things will be ok.
This is a great group of people who will be there to anwser your questions.
Please keep us updated on your doc search and treatment.
Feel better. Posts: 1603 | From ny | Registered: Aug 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Lauren
I got Lyme in Austin - had a picture perfict Bullseye on my leg 20 yrs ago --
LLMD GS is from Austin but now is in Frisco-- She is Awesome-- Helped me get my life back--
It is worth the trip to SF to see her --
3 years of good treatment and I am doing perty good-
Lyme is perty common in Austin --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
Hey, Gee, most of us understand your frustration, fear and confusion.
I suggest being grateful that you have been diagnosed. Now you know what your enemy is, so there is alot of empowerment in finally being diagnosed.
There are many ways to attack this disease.
Read what you can, although don't read EVERYTHING, it will make you whacky-lol
Keep a sense of humor.
You will get better. I have a Lyme friend who had a healthy baby in Jan. He is PERFECT!!!
Keep a journal of who you meet, what you expereince and how you feel on this journey.
Make the most out of it.
It is ALLLLLL about attitude.
My prirmary symptom is severe skin burning- 6 yrs. I figure the skin is going to burn wheather I am poopie or joyful. Attitude.
DO NOT become an emotional victim to the disease or anything else in your life.
You will be well and whole agian.
I suggest getting 2 books, the author is Bryan Rosner.
Peace, BJG
Posts: 468 | From IL | Registered: Oct 2003
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bettyg
Unregistered
posted
welcome lauren! i just sent you earlier by PRIVATE MESSAGE, PM, that's the icon of 2 people standng together, click on it,
my 58 pages of newbie links, advise, long symptoms list, testings, disability, much more and includes treepatrol's NEWBIE link of 1000+ sites of GOOD info.
Please go to SUPPORT GROUPS, left-hand side column by state. Click on the nearest group leader for advise. Read if they want emails or phone calls per THEIR request Do NOT email; many are too sick to reply; thanks
you got a couple of leads, send them a PM using the method above i gave.
this is a 22/7 hr. message board of SUPPORT/education! hang in there with us all!
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Welcome.
I had to google my symptoms to come up with Lyme disease.
I know I was dying and yet given that I had 54 out of 75 symptoms of Lyme disease
Couldn't get anyone to even test me for it.
I am your neighbor in Louisiana. We do have a LLMD here.
You really need to see a Lyme Literate Medical Doctor so that you can get
The treatment that you need to get better.
I believe southeast Texas is considered endemic for Lyme disease.
I have two sisters who live in Spring, Texas who don't believe Lyme is there.
Please pm me if I can be of any help.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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I got lymed in texas 20 years ago.... JUST NOW FIGURED IT OUT!!!!
I am 28 now, 2 kiddos, and miserable. Just started treatment, not sure if I like my LLMD or not right now, not sure if we're on the same page.
I figured it out myself too....been dx with fibro and MCTD for the past 3 years, but felt there was more going on, as my health kepts sliding, and fast.....
get as educated as you can, this is a complex disease.... I am working on that part right now...but everywhere I turn there's more info!
Posts: 151 | From ohio | Registered: May 2007
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posted
I'm also one of the newbies, and this is a great place. I was able to find a LLMD here and have an appointment on Monday morning.
For some reason I had the opposite reaction as you, I don't feel gloomy about it (except the way I feel), I feel like this is something that is totally beatable! I may not have taken this as seriously at first, but now I'm taking control and will beat this.
Take care! hatpianka
Posts: 97 | From Clinton, CT | Registered: Jun 2007
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posted
Wow... I didn't know how common Lyme was in Texas. I'm in West Texas so I guess it isn't as common.. but still there. My doctor said my test was so high positive that it meant both the CDC and NYS requirements. So they had to submit my case to the CDC.
I know I need to try to be as positive as possible. One second I'm mad and ready to do WHATEVER it takes to win this battle then the next second I'm feeling sorry for myself. I really need to change that!!! One thought that keeps going through my mind is that I could get completely better and get bit again. AGH. That scares me. I'm scared my son will get bit.. or may already have this. I need to get him tested. Do any of ya'll have dogs? I'm pretty sure the tick came from my dog. At the time we weren't keeping up with his tick treatment and I remember seeing a few other ticks on the floor by him that I got my husband to flush down the toilet. Now we are very vigilant about getting them treatment once a month. I'm using the cheap HARTZ stuff found at Wal-mart, hopefully that's good enough. Maybe I should invest in frontline.
Anyway, sorry to ramble.. I just have a lot on my mind.
Posts: 248 | From Tejas | Registered: Jun 2007
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