My friend, an infectious disease doctor, whom I discussed my condition with, said it would be in my best interest to take a 2nd Western Blot test due to the false positives that some individuals may receive. On my first, performed by IGeneX, I was IGenex IgG positive. However, because I am skeptical, I am thinking of re-testing. What are your thoughts? How much greater is the accuracy of the diagnosis if you test positive twice? I appreciate the feedback.
Posted by Health (Member # 6034) on :
I would def. get it done again if you have the money.
I want to get it done again eventuallly, but dont have the money now, and dont need to get it done again
YET.
However, if this Bartonella treatment does not work for me, then I think I am going to have to get it done, if I want IV here in Canada.
My LLMD said it would be a good idea to get it done again, if I wanted the IV.
Also, when I went to the Infectious Disease Dr here, he said that I did not need IV, as I had been on orals for over a year, and that the
lyme should be gone.
So, if I want IV and feel that I need it, I think I am going to have to get the IGENEX western blot done again, I do worry though....
what if, it comes back negative this time.
Trish
Posted by lymednva (Member # 9098) on :
To start with Infectious Disease Ducks are not Lyme Literate, so take the advice you got and throw it out the window!
While false negative tests are common, false positive Igenex test are not the norm. If you got a positive test, find a LMD and begin treatment.
You don't need another test. You have already had the best around and it is positive, which many of us cannot get. Save your money for treatment, you may well need it.
Good luck!
Posted by randibear (Member # 11290) on :
are there different tests that igenex does to find out if you have babs or erch?
if it comes back as straight lyme, should you ask for specific tests for co-inrections?
Posted by kitkat32 (Member # 9682) on :
Hi Baron,
If you have the money go ahead and do it. But, in my non medical opinion, one positive test should be good enough.
It would be way more likely to have a false negative than a false positive. What if you get re-tested and it comes up negative? That will just throw you into a whirlwind of confusion.
Why not start some treatment and see how it goes? If you are concerned about the testing you could give Dr. Nick Harris a call at Igenex.
Now, to the point of your friend being an ID doctor. Maybe you could help him out. Do you have an LLMD? Is this ID a good friend of yours? Maybe he would be willing to tag along to some of your LLMD appointments with you. He could probably learn alot and you would be responsible for that.
I had IND testing through Igenex. Bartonella positive and negative for other co-infections. I am happy being treated with those results.
Sometimes you have to take your chances and go for treatment. I had a difficult time accepting that at first. I needed someone to tell me YES..you have lyme. There was no one to tell me that though..not even my LLMD. He said my symptoms look like lyme..my tests look like lyme..but we have to put together a plan and start treating it to see if it is Lyme.
Sorry to rattle..I have just been in that situation before.
Good luck with your decision..but really...think about it. How are you going to feel if it says negative?
kit
Posted by davidx (Member # 8326) on :
Each test is done independently so I think the accuracy of each test is the same. IGENEX tests are more accurate than other Western Blots because their blots are just more sensitive to BB.
Regarding ID docs and LLMD docs, ID docs in general follow the IDSA guideline which dispute the condition of chronic lyme. LLMDs however, follow ILADS guidelines which operate under the CORRECT information that chronic lyme does exist.
So if it makes you feel better, go ahead and re-test but I would bet you that if you were IgG positive through IGENEX the first go around that you will still be positive the second time.
Good luck!
-David
Posted by Geneal (Member # 10375) on :
As my LLMD says, "I see the test, but what are your symptoms?"
I had my initial WB via Quest...didn't know better.
Only one band IgM 23 came back positive.
When I saw the LLMD for the first time I asked if I needed to retest.
Went through my symptom list.
He said it would be a waste of time and money...
I would have liked to see what Igenex found in me, but am glad my LLMD
Was confident enough based on the blood work I had and symptoms to diagnose me.
Please find yourself a Lyme Literate Medical Doctor.
Are you in any treatment? Receiving any meds?
Just so you know that if you decide to re-test for Lyme,
Get off antibiotics for ten days prior to the test.
Hugs,
Geneal
Posted by Baron (Member # 11666) on :
Thanks for the replies everyone. I am seeing a LLMD, or so I was told. For almost two months, I have been on 3000mg/day of amoxicillan, and on 750mg/day of flagyl for almost a month. During that time, I have gone really downhill, as all my symptoms (which are neurological) have gotten worse, and some new symptoms have appeared. LLMD says it could be the bugs dieing, but it's hard for me to believe. I, like many others who have been on a constant search for the reason and/or cure of their ailment, am extremely confused and would like to know with certainty what is causing this anguish that I have been experiencing for several years.
Posted by Lymetoo (Member # 743) on :
It took me a good 4 - 6 months before I really started feeling better, but everyone is different. Most people have the worst time for the fist 4 months of treatment, then they see an improvement.
After that time if your not seeing an improvement then I would make sure you are treated for co-infections (and tests are even more unreliable for co-infections)
Also please read the newbie help links, there is so much infomation there about testing, abx, herxing and so much more. Here is the link: Newbie Help Links
Also, I have had 4 western blots, and they all came out different(they were at different times during treatment & prior to treatment). But I know that I have made progress with abx. It just takes time.
I hope this information helps you, Lisi
Posted by TerryK (Member # 8552) on :
Is your doctor a member of ILADS? If so then you are on the right track.
Your response is common and in fact I am having the same response. Dead bugs cause many symptoms because when they die they release toxins and even metals into the tissues which cause inflammation. Bb lives in the tissues more than in the blood.
When Bb and some other bugs die they create biotoxins. About 25% of the population has difficulty getting rid of those toxins. If you are one of the 25% who can't get rid of them as I am, then you may never get well without specific intervention. Even if you aren't one who has difficulty getting rid of them, your system can be overwhelmed when you start killing a large load of bugs.
Are you on a biotoxin binder such as cholestyramine? Are you taking anything for binding metals? What are you doing for detox? Have you had co-infection testing or evaluation? If you have a babesia infection you will need to be treated for that before you start feeling better. Research and then talk to your LLMD about these issues.
Sounds like you really need to spend some time reading and learning about lyme and co-infections so that you can have a better idea for yourself if you are on the right track. I'm not a doctor but I've been spending serious time and energy for the past several years pouring over books, studies and other materials relating to lyme and with a positive IgeneX test, I'd pursue treatment.
Your ID friend means well I'm sure but he himself needs to be educated regarding lyme and co-infections. The IDSA party line is a sham. Terry
Posted by cmichaelo (Member # 5873) on :
You got a positive test. Accept it and run with it. Start your treatment right away.
If you decide to get second test, it could very well be that that test turns out negative...for a number of reasons.
However none of those reasons will be that "you don't have Lyme disease."
Antibodies fluctuate over time...even throughout the day, I've heard.
Over time, Bb also start to leave your blood. It doesn't like blood. This is why so many peoploe with chronic Lyme keep testing negative...namely because Bb prefers tissue and if it is in your blood it may very well be in the cyst form where antibodies can't get to it.
Again, do NOT waste your time or money on a second test...IMO. You DO have Bb in your body.
I'm not an MD. The above in IMO.
Michael
Posted by Lymetoo (Member # 743) on :
Excellent reply, Michael!
Posted by duke77 (Member # 5051) on :
Main stream medicine led by the CDC is so contradictory. The CDC sets up test guidelines that are for research purposes and almost impossible to achieve. The CDC says we cannot treat you your test was negative. It is all in your head. But when the test is positive. They say take it again it is probably a false positive. You can't win for losing with Lyme.