posted
I have been having symptoms for 8 years, which I suspect could be lyme disease. Is it possible to have it for that long and have no "serious" symptoms(meaning I have never been hospitalized for them)? I imagine something horrible would have stuck me by now, like Bell's Palsy or a seizure. Anyway, symptoms include severe episodes of pain starting in the feet (8 yr. ago), and has spread to hands, legs, and arms. I would describe this pain as a constricting/crushing pain, rather than a pins and needles, or burning, and also have recently developed stabbing/exploding pains separate from the crushing pain. This pain was diagnosed 8 years ago as Reflex Sympathetic Dystrophy (RSD), or Complex Regional Pain Syndrome, but I did not suffer a trauma, which makes me believe that the pain is not RSD. Other symptoms include debilitating headaches (almost every day, multiple times a day), which cause nausea and dizziness, tunnel vision when transitioning from sitting/laying to standing. I have had every blood test at least 3 times with no abnormalities. I have had an inconclusive doppler (legs), nerve conduction study. I saw a Rheumatologist 6 years ago, but she did not mention a possibility of lyme. I am having an EEG on Friday, which might rule out any other neurological causes, in which case, I suspect lyme, mainly because so many other things have been ruled out. I have read many posts and I feel I have common symptoms, but am skeptical, only because of the time frame. Has anyone had a similar experience?
Posts: 21 | From Richmond, VA | Registered: Jun 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi and welcome!
Yes, many of us were undiagnosed/untreated for many years....21 for me.
Not everyone is disabled, but can still be sick.
The lab tests are very unreliable and Lyme is a clinical diagnosis based on history, symptoms and exam.
Your best bet is to post on the Seeking a Doctor board to find a LLMD in your area.
99% of other Dr's just are not educated enough about Lyme to be able to help you.
You also need evaluated for common coinfections like babesia, bartonella, ehrlichia,etc.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Great links! I'm going to print out the check list from the guidelines link right now to give to my doctor! Thank you so much!
Posts: 21 | From Richmond, VA | Registered: Jun 2010
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posted
It took 11 years, then they said I had MS. I could still walk 18 holes of golf. Then 5 years later I figured out it was really Lyme. Now it's been 6 more years....
Posts: 252 | From NJ USA | Registered: Mar 2004
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posted
It's good to hear this; at least I might be in the right place!
I'm not seeing the Rheumatologist specifically for Lyme; My Allergist/Immunologist wanted me to see one, because I saw a pediatric one years ago, and she wanted me to see an adult one, although I'm not sure what they are looking for.
@lymetoo: I have read Three Cups of Tea!
Posts: 21 | From Richmond, VA | Registered: Jun 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Took me 15 years to get a diagnosis. And I didn't have anywhere near the level of symptoms you are describing!
posted
I had undiagnosed Lyme for 8 years before figuring out what was going on, myself. For most of that time I had steadily increasing symptoms, including burning pains in my feet, arthritic pains, and GI symptoms. They did not disable me, and all my tests were normal, so I did my best to ignore them. Then things got a lot worse, and I was able to see a good LLMD who diagnosed me with Lyme. And things have been getting better. This site is a good place to get info, also the book Cure Unknown or the movie Under Our Skin. Good luck!
Blackbird
Posts: 30 | From Massachusetts | Registered: Dec 2009
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posted
I was 24 years - nothing drastic for the first 20 years after the tick and bullseye rash, only an uneasy feeling that there was 'something wrong' Then another 5 years of all hell broken loose.... and KNOWING something was DRASTICALLY wrong. I would cut to the chase and find yourself a lyme literate doctor right now. Good luck... Liz D
Posts: 234 | From BC Canada | Registered: Aug 2008
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
You probably won't get a good response from your rheumatologist. Just don't want you to be surprised. You might want to go to the seeking a doctor section and see if you can find a lyme literate doctor that might be close to you.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
I felt I had Lyme disease but was told it was chronic fatigue and fibromylgia... The truth is, some people never get the right diagnosis and then wind up dying prematurely from untreated lyme.
Posts: 107 | From new jersey | Registered: Dec 2009
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onbam
Unregistered
posted
It can, and you needn't have had a tick bite. Check out my link and do a search for mjbucuk's thread on salva--concerning.
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