I'm sort of trying to figure out if I actually have lyme. (I have positive Igenex test, but doctor thinks its negative). And yes, I'm seeking a second opinion.
I know that one of the main symptoms of lyme is pain. Which I don't have. Are there people that have lyme without any pain. I mainly have fatigue, GI issues, toxic feeling, brain fog.
Thanks
Posted by dmc (Member # 5102) on :
Not everyone has pain with lyme. Pain is a misconception...probably why doctors don't bother to think of Lyme.
print or download the green booklet. Down on Left side.
4 pages of symptoms tick diseases (lyme) can cause
[ 03-14-2010, 01:03 PM: Message edited by: dmc ]
Posted by steve1906 (Member # 16206) on :
All your symptoms = pain to many other people.
You doctor would not have ordered lyme blood test if he didn't think your symptoms related to Lyme.
See an LLMD.
Posted by dmc (Member # 5102) on :
I don't know where fatigue & brain fog would = pain especialy to people who have pain.
Posted by NeuroEcclectic (Member # 17783) on :
No pain here... all neuro like MS.
Posted by steve1906 (Member # 16206) on :
I guess I didn't word it right,,,Sorry...Lyme overall is a pain to me...
Posted by nefferdun (Member # 20157) on :
Some people, like myself, have mainly neuro symptoms while others have arthritic symptoms. I read somewhere if you were bitten near the head or spinal cord your symptoms are usually more neuro. Your symptoms are neuro.
Symptoms vary and come and go. You may have had pain that went away - a sore muscle or joint or a headache or just feeling like you had the flu. Treating with abx often brings out symptoms you never had before and intensifies those that you do have. I would try a course of abx to see what happens.
Many people with lyme do not get any positive results on their tests so most LLMD's treat by symptoms. Since you did get positive results, you should be treated now, before you get sicker and finally exhibit the pain. Often people will test much more positive after a few months of abx.
Posted by Pinelady (Member # 18524) on :
I know a man who's Lyme was all neuro. He did have the creepy crawlies many of us experience, but his
was mostly shown in the brain, by forgetting where he was, how he got there and how to get home!
Forgetting words, not able to speak what he wanted to say. Weakness. I do think this show of symptoms
would be worse, esp. if you are over 50. They may never bother to look...
Posted by karenl (Member # 17753) on :
I have no pain but vibrating.
Tosho, I have questions concerning your cpn. Did you do a test at a special lab or just at labcorp?
I have red dots on the skin and that would fit for cpn and once an ART tester said I would have it. I looked at the cpn page and that would all make sense with the porph .... How are you combinig the treatment for both?
Posted by lymebytes (Member # 11830) on :
My son didn't experience much pain, here and there through herxing. He didn't have any co-infections though.
You describe his symptoms to a "T". He started w/Flagyl, then on to Doxy for about 6 months at high doses, then 9 months of Bicillin and is now well.
Posted by Robin123 (Member # 9197) on :
Symptoms really vary. One person I met has no pain - they're numb.
Posted by asummers (Member # 18068) on :
No pain ever, just severe fatigue and brain fog issues.
Posted by TerryK (Member # 8552) on :
I've been infected for decades and during that time I've had many long periods of time with no pain. In my case, as the infections progressed, pain became more prominent until it was all over excrutiating body pain. I did have some joint pain when I first became infected but that pretty much left for many years except for rare flares of joint pain.
Edited to add: I forgot that I did have constant bladder pain for many years.
I have many symptoms, but rarely pain.
Posted by KS (Member # 12549) on :
Never had pain. For me, my worst symptoms were flu-like symptoms (e.g. severe nausea, weakness), heart palps, etc.
Posted by lymeladyinNY (Member # 10235) on :
Wow, for me Lyme has been the most painful thing I've ever had to deal with. It makes me scream it hurts so bad. When I'm asked where it hurts I just say "everywhere". Thankfully, the bad pain isn't constant, but I'm always feeling SOME pain.
Posted by MariaA (Member # 9128) on :
fatigue and brainfog, no pain, were my only issues for a long time. I did have migrating joint pain initially when I first got Lyme but it went away with brief treatment at the time (not enough treatment).
Posted by disturbedme (Member # 12346) on :
I don't have much pain with lyme.
The only pain I really have is neck stiffness and the pain with that and then the pain and extreme torture that comes with my time of the month. That's pretty much the only real pain I have to deal with.
Posted by kateaton (Member # 24871) on :
I guess that answers that question for me. I guess I never really felt like lyme fit for me because I don't have the stereotypical pain symtpoms.
Obviously, I was wrong.
Posted by heiwalove (Member # 6467) on :
hardly any pain. every other symptom in the book, though, particularly the neurological ones.
Posted by street129 (Member # 23472) on :
are you willing to show your test result here, to see why your dr things its negative.