What are your thoughts on these labs?

[angelofeventide]

I had a positive IgM, but negative IgG test back in 2002, and had been symptomatic long enough to where I should have gotten a positive IgG.  The doctors who tested me however said I did have Lyme for sure, not just based on the positive IgM, but because of my symptoms.  They were lyme specialists.

When I got back to CA where I was living (tested out of state, but they did use Igenex), no doctor there would treat me, because they said there was no lyme in CA (which is a crock of you know what!).  Back then, I was very naive and thought they must be right, because they were doctors.  Don't get me started on that whole issue.

Anyway fast forward to today.  Since then, I have suffered horrifically for the last 8 years since that test.  I put the possibility of Lyme out of my mind because of what I was told.  I won't bother to tell you how much I have suffered because I am sure you all have gone through probably as much.  We now are living in Cen. TX until late July, at which point we will be returning to CA.  I have already found a LLND who I plan on treating with.  Anyway, while here in TX, I had some new labs done, since it had been a while.  Doc said he would retest me for lyme through his own lab and I told him he probably shouldn't even bother, as most non-Igenex labs have a high false negative rate.  He ran it anyway and surprise, I have another positive IgM, but negative IgG.  I also have 99% of every lyme symptom there is.  My ANA was negative, my SED rate was slightly elevated at 31 and my C4 was low.  All my other labs were normal.  He says I do not have Lupus, Scleroderma, MS, etc., but that he also doesn't think that I have lyme and that my immune system is probably attacking my body for some mysterious reason.  This doctor is not a lyme specialist.

This has been beyond frustrating for me.  I don't think most non-lyme doctors really are giving people accurate information.  I joined a lyme support group for CA and many of the people have told me that their Lyme doctors are finding that many chronic/late stage lymies are in fact coming back with the positive IgM, negative IgG combo and though they don't know why, they are still treating them for lyme.  Have any of you here had this happen with blood levels and still had Lyme?  I'm retesting next week through Igenex to see what their results say.  Thanks.  

[Hope75]

I was positve by Igenex on IgM (CDC positive) and negative IgG.  I went straight to an LLMD, after getting the shaft from Johns Hopkins, and he started therapy immediately.  I feel much better than I did...

Moral of that story is, I think I was infected 20 years ago and it started really affecting me four years ago.  So, I suffered 3.5 years thru countless tests and three negative Western Blots thru conventional labs.  If you are having all of these problems with no answer (other than a positive IgM for Lyme)...an LLMD needs to be your point of contact.  Period.  Don't listen to any non-LLMDs, it's worthless chatter.  

If your new Igenex is positive again, you've just firmed up that an LLMD is your man:)  It also presents answers and treatment options, which is a good thing.  I never thought I would beg for a diagnosis of a disease, until Lyme.  

My LLMD didn't bat an eye at my negative IgG and positive IgM.  It's been so long, I honestly had to look up my results again, so that tells you how far you can go in treatment.  I was obsessed with my lab results prior to treatment - now I forget them!

Take care and hang on!

[wonko]

When you got the Western blot done, were you given a detailed report, or just the overall interpretation of positive versus negative?

The IgM is supposed to indicate active infection, while the IgG is a sign of past exposure.  The CDC requires 5 bands to appear on IgG to count as a positive result.  IgM requires only 2 bands for a CDC positive.  Many doctors argue that these limits are too strict, and Igenex requires only 2 bands on IgG to qualify as positive.

In other words, it is better to get a detailed report of the Western blot, showing what level was observed for each band, instead of just the overall interpretation of positive or negative.

Also, there are a number of reasons why a person may test negative for Lyme disease even if they are very sick.  Many ticks carry other illness, referred to as co-infections, that can't be diagnosed using the same tests used for Lyme disease.  Also, the Lyme tests don't look for Lyme bacteria directly, but instead for antibodies from the immune response to Lyme.  People who have been infected for a very long time may have run down immune systems that are no longing producing large enough amounts of antibodies to show up on tests.  In that case, the people most sick from Lyme are less likely to test positive for it.

As noted above, this leads to a frustrating situation.  That is why so many, self included, seek out ILADs-trained LLMD's to help sort out the mess.  I didn't get anywhere with standard MDs.

Good luck and take care.

[JackieCalifornia]

From what I have read and been told, all the tests can be off, tho Igenex is said to be a bit better because it gives more detail for the MD to make a judgment on.  But none of the tests are clearly yes or clearly no -- the tests have to be interpreted in view of symptoms and history, which is where the 'art' part of 'the art of medicine' comes in.

MDs who follow the IDSA guidelines interpret differently than LLMDs following ILADS guidelines ... so the trick is finding an LLMD you can work with who understands you and your symptoms and history and interprets the tests accordingly.

It's frustrating for all of us, so you're certainly no alone in that regard.   I'd suggest you get copies of all your test results and keep all the copies rather than give them to a new MD without copying, because you might need them for a new MD in the future.

Good luck, let us know what happens and how you do.