I wasn't sure if I should post this here or in general support. I don't have a question to ask but I noticed this was alot busier that the support board. So, I will start off here.
I have been infected with Lyme since 1996. Mis dx'd as having MS for the last several years. Just started treatment for Lyme and positive Bartonella in March of this year.
I have been through the mill like most of you with so much testing done. I stopped counting after the third spinal tap....ouch.
Anyway, I have really been enjoying reading your posts and learning from them the last several weeks.
I am suffering from one of my nights of insomnia so I thought I would finally take the moment and get myself registered instead of being a lurker...that makes it sound so creepy.
posted
Welcome to Lymenet -- thanks for delurking and introducing yourself. Glad to hear you got a real diagnosis finally, and now can get on with the business of healing.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Hi kit,
From one kitkat to another, Welcome
Please don't fret too much about where to put your posts. You'll catch on in no time. The important thing for now is to get your questions asked and answered.
I am so glad to hear that you have found what is really ailing you. You are one of the lucky ones that through determination on your part (i'm sure), figured out what was really making you ill.
Welcome aboard, this is a wonderful site that has been instrumental in helping hundreds and hundreds of people.
Alot of PA people here, myself included, I grew up there, but hopped over the Delaware River to NJ.
Again Welcome
Posts: 263 | From Georgia | Registered: Feb 2006
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Welcome! I'm curious, what test finally determined your lyme?
Also, did you have a point in your MS diagnoses that you felt it was conclusive? What prompted your to check out lyme? I talk to alot people w/MS who are SO closed off, hats off to you for having an open mind. To me it's a no brainer that MS only gets worse, what's the harm in trying an accurate lyme test? It will always puzzle me.
Love to hear your take on this! Curley
Posts: 982 | From Florida | Registered: Feb 2002
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I did have to have alot of determination to get the correct dignosis. I never felt comfortable with the MS dx. My spinal taps are clear and so are my MRIs.
I remember having a rash in 1996. It was really bad and no one knew what it was. It cleared up in about 2 weeks. At that time I never thought about Lyme. Then I had what I thought was the flu. After that I started having anxiety attacks that came out of no where and were really bad. Bad enough that I hospitalized myself. It all went down hill after that. All of the usual symptoms. Knee pain, memory problems, numbness and tingling, heart palps..and on and on and on.
My neuro really thought MS because of the tingling and memory problems. I started the steroids and never really got better. The knee pain and heart palps never went along with the MS dx. I pushed for lyme testing not being aware it wasn't reliable. Another spinal tap..negative..and just a Elisa...negative.
Last year I had enough. Life was falling apart. I couldn't stand not knowing what was wrong with me. I pushed again and found a doctor to sign the scripts for Igenex testing. My Lyme Igg western blot came back with several positive bands and six IND. Igm had one positive and 3 Ind. Not enough to be considered positive. MY Bartonella was positive though. Same doctor read the results and said..not lyme results are negative. I went back to square one. I starting thinking I was crazy.
I finally found an LLMD a few months ago who reviewed my results and said it is Lyme. I see him once a month now and I am improving.
One major herx last month and we are going to be adding more abx soon.
So, that's my MS story. To top it all off the original neuro said...lyme would explain all of your symptoms.
I always knew it wasn't MS. I never felt comfortable with being dx'd with that. I also went through the whole Lupus and connective tissue disease dx. That is a whole other story..it is almost the same as the MS story..LOL.
Thank you again for the welcome. I hope that I won't only learning from being here but that I can add some helpful advice for others too.
Wow..Looonnnngg post. Sorry. Have a great day. kitkat
Posts: 655 | From Pennsylvania | Registered: Jul 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Welcome My neuro really thought MS because of the tingling and memory problems. I started the steroids and never really got better.
Whoa!! steroids really help the spirochetes its a immune supressor.
Glad to have ya here
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Glad that you registered and will start to post. There are a lot of good people here on this website willing to help. I would be lost without this site: the lyme friends I have made, the knowledge that I have gained, the improevement in symptoms. You are at the right place!! Stay strong and have better days. Welcome aboard.
Posts: 719 | From Delaware | Registered: Jan 2006
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Hi Kitkat and welcome.
Glad you have joined.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
I relate to the MS thing a bit -- I've had 2 doctors try to go down that road with me (I've had so many wrong diagnoses it would be funny if it wasn't so tragic!)
non-LLMD docs tend to rely so heavily on test results, not taking into account that the testing is very inaccurate and Lyme really needs to be a clinical, symptom-based dx. Some of them are honest, just doing what they've been taught... others are purposely biased against Lyme.
I'm glad you are on a good path now! Kudos to you for taking your health in your own hands.
Post, ask questions, research. You have a lot of support here on this board. The herxes can be pretty awful, but the results speak for themselves.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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bettyg
Unregistered
posted
I sent you a PM with all my newbie sites to visit...
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