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?
Posted by Dekrator48 (Member # 18239) on :
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.
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!
Posted by Lymetoo (Member # 743) on :
OH yes!! Took me 42 yrs to find out I had Lyme.
Go here for a symptoms list and other information:
Go to Seeking a Doctor and post there to find an LLMD near you. Most rheumies by the way will not look for Lyme.
Posted by dsiebenh (Member # 5353) on :
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....
Posted by illusion91 (Member # 26361) on :
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!
Posted by BoxerMom (Member # 25251) on :
Took me 15 years to get a diagnosis. And I didn't have anywhere near the level of symptoms you are describing!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by illusion91: It's good to hear this; at least I might be in the right place!..............
@lymetoo: I have read Three Cups of Tea!
Yes, you're likely in the right place!
I'm now reading his second book, Stones Into Schools. Barely on page 30!
Posted by Blackbird (Member # 23679) on :
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
Posted by hcconn22 (Member # 5263) on :
Yes
I went 8 years
My wife went 18 years
And out son we believe was born with it and we did not find out until he was 13yr old.
We have all suffered in many ways and it can go dormant and or into remission-- then WHAM (fill in the blank) for the symptom-s.
Posted by Liz D (Member # 16739) on :
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
Posted by kidsgotlyme (Member # 23691) on :
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.
Posted by joshzz (Member # 23526) on :
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.
Posted by onbam (Member # 23758) on :
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.