Just curious who on here was diagnosed clinically besides me ? i've tested negative 7 times but have a laundry list of circumstantial evidence...including a postive tick.
Thanks, Dave
Posted by Beverly (Member # 1271) on :
Hi Dave,
Wow a positive tick, that probably helps a lot.
My tests were considered negative, even tho I had some bands show up. However, I did have an EM rash after being bitten in 2001. So for me that was as positive as it gets.
Posted by hcconn22 (Member # 5263) on :
In the end Lyme is Always a clinical DX.
Posted by AliG (Member # 9734) on :
I had the rash, positive Babesia AB and negative WB (1 band).
After Txing Babesia twice then Txing Lyme for 3 months, my WB turned positive.
After ceftriaxone, back to one band.
Full-blown relapse > CDC positive.
Have you tested for/treated co-infections? They can take down your immune response.
Were you treated right away with inadequate ABX?
How long ago were you bitten?
How long have you been treating?
Have you experienced Herxheimer reactions?
Posted by DaveNJ (Member # 17362) on :
Ali
i was bitten in 2006. tick tested positive. i developed a myalgia that spread from my hands to my arms and thne to my legs.
tested negative 7 times over 2 years for lyme and for co-inf. then this june symptoms exploded into a bunch of neuro things.
palpitations, insomnia, fatigue, loss of short term memory. speach pattern issues...docs wanted me to go to a shrink...which i did.
i also found a llmd and she called it a clinical diagnosis of lyme and 've been treated for a month. Still loking for a convincng thing....i can say i've improved slightly in the month...so we'l see.
thanks or asking.
Dave
Posted by METALLlC BLUE (Member # 6628) on :
A postive tick in conjunction with recognized symptoms is an objective finding. Especially if tick was found hours later and was engorged. Testing for Lyme, were Western Blot bands found?
Posted by DaveNJ (Member # 17362) on :
Metallic Blue, to date no positive bands. The tick was on me for three days and was engorged. Worse part is i should have known better. i spend a lot of time fishing in the woods....i got lazy that weekend.
Dave
crazy...even though there is plenty of reseach saing 40% will always test negative i still want that positive test....mostly to shove up the @ss of every Dr. who dismissed me
Posted by Raymond (Member # 13980) on :
David,
Don't want to sound off base here but did Igenex do the testing or just a local lab? May want Doc to throw in a CD57 also. Of course the relevance varies but it maybe able to paint a more definitive clinical picture for you. The main thing is treatment is what I'm told.
You even saw the rash I never did and that makes it more confusing...
Posted by bettyg (Member # 6147) on :
i was CLINICALLY DX by my pcp of 24 years who had seen me go thru all the symptoms and diagnosis after
positive igenex western blot igm/igg blood test! Posted by adamm (Member # 11910) on :
Virtually everyone is. Do a search here for an article from
Johns Hopkins explaining why this must be the case.
Posted by AliG (Member # 9734) on :
quote:Originally posted by DaveNJ:
crazy...even though there is plenty of reseach saing 40% will always test negative i still want that positive test....mostly to shove up the @ss of every Dr. who dismissed me
BTDT-IMO not "crazy" at all. Who doesn't want to have hard-core evidence to prove that the doctors who dismissed them were wrong?
Any chance that you may have been re-bitten, adding a new co-infection?
What co-infections were you tested for, from which labs and when?
My HGE didn't turn positive until after Txing Babs, Lyme and then 30 days of Levaquin for BLO.
They all impact the immune system, so immune response-based testing gets all messed up.
I tested positive for Babs AB through Quest. Then when that was negative & I was having Babs Sx again, I tested positive for B.duncani through MDL.
There are Babs and Bart strains they can't even test for.
I was in treatment for around 6 months before I was finally able to start showing positive Lyme Blots.
If you have a good LLMD, you just need to have patience. Once your immune system starts getting the upper hand, the positive tests will follow.
Just curious, what labs did you test through the 7 times you had tested?
Posted by METALLlC BLUE (Member # 6628) on :
quote: Metallic Blue, to date no positive bands. The tick was on me for three days and was engorged. Worse part is i should have known better. i spend a lot of time fishing in the woods....i got lazy that weekend.
Dave
crazy...even though there is plenty of reseach saing 40% will always test negative i still want that positive test....mostly to shove up the @ss of every Dr. who dismissed me
That information confirms a diagnose then. It is objective information that the CDC would accept when diagnosing Lyme Disease. Additionally, if you haven't been tested through Igenex, I would recommend it. Test 188 and 189, Western Blot IgM and IgG.
Hope that helps if you haven't done it yet. It's covered by Medicare and some insurance companies will reimburse for it, otherwise it's 200 out of pocket. It's well worth the money. I only wish I'd gotten it much sooner.
Posted by DaveNJ (Member # 17362) on :
i guess i have to push harder.....all of my tests excet one were done through labcorp. i have my records from my doctors but they are the Doctors reports and not the actual labcorp reports.
i want to get the actual report..will labcorp give them to me ? or do i have to chase my doctors?
i was to do iGenex but aren't i correct is saying i can't do that while on abx?
Dave
Posted by Keebler (Member # 12673) on :
-
If you are being treated, while bother with tests? They serve no purpose along the way. Even with the best labs, they only test for one strain. There are many strains and even the best tests are not always going to be able to give answers.
Did you EVER have a bulls eye rash or other rash around the time of a tick bite? Not every one gets the rash but the bulls eye is always lyme.
Are you confident with your LLMD?
Have you been assessed for all the tick-borne infections?
You can contact Igenex directly for details about testing.
quote:crazy...even though there is plenty of reseach saing 40% will always test negative i still want that positive test....mostly to shove up the @ss of every Dr. who dismissed me
LOL!!!! I SOOOO did that to all 15 who dismissed me.
In the end, dx is always clinical. Lyme and coinfections.
But... since you are being treated based on clinical, I'd skip the Igenex testing and be happy you found an LLMD with good diagnostic skills.
Posted by Wimenin (Member # 15294) on :
I personally thought lyme when I started piecing it all together. Even when my quack neurologist, mental health person, and family dr thought otherwise. Eventually though there were little flags that made it all fit together. When I saw a LLMD, he made the clinical diagnosis before even sending off the blood test. The blood test came back positive from Igenex, and treatments been on going ever since.
The bottom line, see a qualified LLMD, and theyll go through the office dx. imho: If you have the actual tick that caused it, and its lyme positive, and youve got the symptoms, youve got lyme.
Posted by DaveNJ (Member # 17362) on :
Hey gang,
Lots of good advice. Your right. Who cares right now as i'm being treating. So great to be at work and herxing at the same time.
Am i correct in sayiong you can't test while on abx?
Dave
Posted by gemofnj (Member # 15551) on :
Dave,
Just had my second Igenex test and I am on zith. I thought the same thing as you and I asked my LLMD 'wouldnt this affect my results'?
Before being diagnosed, my VERY FIRST test before any abx with Labcorp was IGM positive for bands 23 & 41. ID Duck said that because I was negative on the IGG that it was a false positive. Duh, NOT.
Five weeks after that, my first Igenex tested negative with IND's and the test was taken immediately after I stopped taking doxy. (IND's are actually considered weak positives)
She said, if you have IND's on your test results, and you are on abx, it can actually cause the results to become MORE positive because your body develops antibodies to the lyme, and that means your body is now fighting the bacteria.
Which I think means that you can have a negative because your body has not developed antibodies.
Any way, I guess that is the theory. NOTHING has a concrete rule with this disease!
My test results will be in by around 10/21 and I will post my results.
Posted by lymemommy (Member # 12495) on :
Dave, my son was tested 3 times over the past year, two of which he was on abx at the time of testing.
He tested positive all three times. The extra two tests were by other docs who "wanted to make sure he really had lyme."
Yup. he sure did. Like the 20+ em rashes he had didn't count.
So in answer to your question, (in my uneducated, non-medical opinion), yes you can be tested while on abx.
I know things work different for us grown ups, as our immune systems are bogged down by other stuff like viruses, and chances are you've been sick a lot longer than my kid, but eventually it is likely that you'll have the positive test ready to visit the uh, places where the sun doesn't shine, so to speak.
For a grown up angle, my hubby tested neg via labcorp and quest, pos via igenix. I test neg thru everyone, but pos for bart.
So if you really really want that positive test in hand, do the igenix thing.
Take care, kp
Posted by METALLlC BLUE (Member # 6628) on :
Dave, you can do the Igenex test even while on antibiotics. It's the antibodies the test is looking for, not the bacteria. You actually serve a better chance of finding the antibodies when on antibiotics, because the antibiotics kill the infection, leaving antigens of the dead organism behind, which are more easily grabbed by your immune system.
You have to chase your doctor for the Labcorb report unfortunately.
I would want actual results in my hand too, so do all you can to get them or you may never have peace with your diagnosis. If there is a chance it'll be positive, that confirmation is good for the spirit.
Posted by AliG (Member # 9734) on :
I had a lot of positive bands on IGenex while on ABX.
My CDC positive from Quest was on ABX.
Test/Tx coinfections. Then the ABX can help take Lyme down to a more manageable level.
If the immune system is overwhelmed, all the ABs may be bound up in immune complexes and there wouldn't be free Abs to detect. Txing can take the level down to a point where some free ABs may be detectable.
![[Wink]](wink.gif)
![[Mad]](mad.gif)