posted
i'm trying to find out if i could have lyme. friends have been concerned that i might.
it started out with swelling and pain in my left knee. then swollen lymph nodes in my groin on the left side. then aches and pains all over the body, headache, and fatigue. i was taking ibuprofen constantly to deal with the pains. then a slight rash going from the lypmh nodes half way down my leg. followed by a rash on my torso, both sides. joint pains that seemed to migrate. mainly in my legs, but also in my elbows and wrists. i've been seeing an acupuncutrist and have gotten better. also i've seen several doctors. after several visits i was found positive for CMV. they told me that explained all my symptoms and that was that. i ended up seeing a CMV specialist that told me my CMV test result was normal--that it didn't explain what was going on. so he took more blood and did more tests. i've been tested twice for lyme and both times were negative. i don't have the joint pains like i used to. i get headaches every now and then. just had a sore throat for a few days, with a heavy head. my knee still bothers me a bit, and now my lower back is a great deal of pain which could be work related?. every now and then i have this tired feeling. and i sleep more than i ever used to. it's been 2 or three months since i found the swollen lymph nodes, which have gone down now. so, i am just concerned since i haven't yet returned to my normal healthy self. i live in north carolina and have had severl tick bites. i work outside. i can remember pulling off two this past summer that were attached pretty good. if anyone has any insight i'd appreciate it. just wondering if i should still be concerned about lyme. could i be positive after already having two negative test results. these tests were done within two weeks of each other.
posted
When you were tested for Lyme, were taking any antibiotics? Also do you know which blood tests were taken? You can find out from your doctor. If you were on antibiotics at the time, ie. for your sore throat; you probably wouldn't test positive for lyme. You HAVE to be VERY VERY persistent!!!! Don't give up. If you know something is wrong, and you still don't feel yourself, badger any dr. that will listen to you!!! Lisa
Posts: 10 | Registered: Dec 2004
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Hi and Welcome-
Someone will come a long soon with links for new members.
About tests. There is a high false negative rate, our bodies may or may not be making antibodies to the particular "strain" of lyme being tested for. You could have one of 6-7 co-infections, so lots of tests could have been done.
Also, many doctors don't know how to read the test results. My son and I both had positive results that were read as negitive, don't ask me how, they looked positive to me.
PCR testing is for DNA, but lyme isn't a disease of the blood so it is only found occationaly there.
The fact that the doctors you have seen haven't found a clear cause for your symptoms is reason to keep looking for an answer.
trust your instincts. if you believe that something isn't right with your body keep looking for answers. look under every rock.
your symptoms do sound suspicious. false positives mean nothing. only labs to get tested at are Igenex and Bowen. all others aren't capable of detecting lyme.
if you are feeling crappy i think you definately might want to look further. trust someone who fumbled around in the dark for 18 years. the only way to get help that you might need, if you do have lyme is to go to a llmd. All other drs. don't have a clue regarding this topic (unless they have been taught by a lyme paitient).
i'd write more but a bit wiped out after having 2 teeth pulled today. let me know if you have any other questions. regards paisley
posted
Why don't you check in with the support group in NC? Click on the support groups line in the green menu box on the left side of this page. Maybe you will find someone close to home that can help steer you thru the possibilities of tick borne diseases as a cause of your health problems.
There are quite a few Lyme patients in that state.
Posts: 8430 | From Not available | Registered: Oct 2000
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You've been given good advice. Don't give up on the possible diagnosis of Lyme and/or other Tick-Borne Diseases (TBDs).
There is NO test that should be used to "rule-out" Lyme disease. It's a clinical diagnosis based on history of tick bites, symptoms, response to treatment. Test results may or may not be supportive info.
Almost all your symptoms are also symptoms of Bartonella (Cat Scratch Disease) which can be transmitted by ticks.
Don't have the details, but a study in North Carolina found that 85% of the ticks tested were positive for Bartonella. Bart takes a different lab test & different meds from LD.
You need to be evaluated by a Lyme Literate Med Dr (LLMD).
What part of NC are you located? There's a LLMD near Charlotte.
We don't give drs' names here without their permission, so if you'll e-mail me, I'll give you info about the LLMD.
At the top of my response, click the icon (little letter) for e-mails.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD inSeeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. ) See this ( . )thats the size of the larva stage tick... Next nymph size... ( * ) Next is adult ( o ) to ( 0 ) Pretty small????? HUH
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