Friend (MD) is Disagreeing with my Diagnosis Now!

[Hope75]

My friend is an MD and just called to tell me he spoke with a neurologist friend who said Lyme is extremely rare in NC and that Igenex is notorious for false positives.  He said I need to go to Duke or a large academic center and see both an infectious disease specialist and a neurologist that work together.  What am I supposed to think?

I am about to start treatment and the naysayers are coming out of the woodwork.  My scientific mind is reeling.  There are tons of professionals on each side of the coin and one is saying black while the other is saying white.  This really frustrates me.  Why would these people get better then, the ones here and the ones I've seen on the documentary?  

Are there statistics out there to state the number of people that get better with long term antibiotic treatment vs. the number that do not?

Is there any compelling evidence that Igenex Labs is faking their labs?  It can't be about being too lax in their guidelines for Neg vs. Pos. b/c I was positive by their protocol AND the CDCs protocol.  So, they would have to flat out lie on our reports.  Why wouldn't I have tested positive with the other two WBs I had by other labs if they, too, used the stricter guidelines of the CDC?  I still tested positive on the ELISA at Johns Hopkins that was followed by a negative WB.

I am still getting treated soon, regardless.  I am easily frustrated with conflicting information.  I mean, I am already riding the rollercoaster and I haven't even started the treatment yet.  Sigh.  There are so many smart people out there, I can't believe we are still questioning one little bugs' power.  If I get treated, and I make an obvious recovery, I am going to be visiting each and every one of these naysayers, in person, anywhere I have to go.  They will get educated if it kills me:)  Now, back to being brave.....

[JackieCalifornia]

I'm no scientist, but it doesn't strike me as totally odd that different tests would give different responses at different times.  Lyme comes in waves, and the bits and pieces of stuff that the different tests locate in blood samples could be higher at one time than another -- just as with blood tests for everything else.  Mother Nature is not big on consistency -- everything in nature comes in waves, night/day, winter/summer, hormones up/hormones down.  Science tries to impose fixed standards on things in order to make comparisons, but Mama Nature just doesn't go there.  

Blood will not always have exactly the same homogeneous distribution of bits in each test sample; the bugs hatch in waves, so antibodies are more present sometimes than others; the tests are not perfect, so results will vary from time to time; the immune system may be more active (and thus the bugs fewer) from time to time ... and so on.  I feel the disease rise and fall, so I would expect the test results to do the same.  And of course, different labs are more or less careful, depending on the tech, on the test chemicals, and on how long the blood sat in the lab (or the FedEx box) before being tested.

Nothing's easy, and what's important is how one feels and what symptoms one has as well as what's written on the test slip.  The art of medicine is being lost in the sea of science.  The mistake the CDC and IDSA has made is trying to impose rigid standards on Mother Nature and expect her to snap to.  The ancient Greeks called it hubris; it still applies but the CCD and IDSA didn't take that class.

[jason80]

I empathesize with your frustrations and can't add much beyond the good comments that have been made thus far. With regards to your specific question regarding validity of Igenex:

Based on other's comments in past threads and with regards to my own blood work -- that Igenex gives more positive results. I doubt anyone will debate this, the question is why and who is right? The hard copy also mentions greater sensitivity than IDSA, which just may mean greater sensitivity with less confidence (it's unclear). I think that IDs are skeptical of Igenex because they tend to give more positive results than their own labs. I doubt there is any data available to make a convincing point about which labs are more reliable to either side IDSA vs. ILADS.  That is, if there were data that claimed that Igenex labwork was more reliable, the LLMDs would believe it, and the IDs would claim the data wasnt reliable. And of course, the converse is true if the opposite occurred.

I can appreciate that LLMDs and IDs can use different criteria for being pos or neg for Lyme, but it bothers me greatly that we can't get consistent results from the different labs. It's shameful.

ps. My own blood work was like yours (IIRC). I am "CDC" positive for IGM specifically by Igenex, and IGG negative. When I retested later for IGG by Igenex, I was still negative, so by "CDC" standards I am Lyme negative since they regard the IGM as a false positive if the retest is negative.  I was negative by another lab, and negative by another lab on ELISA.

[SOONERMOM]

You are getting such great advice here.  My LLMD also tests for other possibilities.  

I would assume that by the time someone finds themselves with a lyme diagnosis, a lot of other diseases have been ruled out.  I would also think that  if IgeneX really DOES have more positive blots than other labs, this could be the reason.  

Lyme(unless diagnosed very early) isn't a neat and tidy little diagnosis with a matching treatment.  I am sorry for all of us.  It just isn't right that we are stuck in this situation.

I do also agree with cindy that you have to continue to monitor your individual situation and be aware of any other health issues.  I don't know what they were watching you before you came to this diagnosis, but you might want to get follow ups every so often depending on your symptoms and lab findings.

So many people with lyme, think that everything is lyme...MS, ALS, Lupus, RA, Alzheimers, etc.
I believe that they are different, but that lyme can "trigger" those autoimmune diseases in certain people.  I may be one of those cases, I still don't know.  It's nothing that I can turn my back on, however.  When you have an active infection attacking your brain that is one thing.  When your own immune system is attacking it, that is a whole other thing in my opinion.  This is just another area of controversy, but I believe everyone has to make up their own mind.  Some of this is discussed in the end of "Cure Unknown".  When I read that the OspA antibody to lyme had been shown to attack myelin, I wasn't surprised since I have a ++++ to band 31 that represents OspA.

Hope, I believe many of us  are on the "fringes" of modern medicine.  Maybe one day they will actually treat these stealth infections instead of letting people develop autoimmune diseases that really have no cure.  These MD's can sneer all they want, but I have to live this present reality that is my life now.  If you decide to give abx a try and you are monitored for adverse effects and you can feel better and regain your life, then what do semantics really matter??  I guess I am of the opinion that it is more risky to not treat lyme and let it go unchecked.  

[cindy903]

You are SO lucky to have an MD friend who only is trying to help you.

If I were you, I would concede that Lyme is at the very least a controversial diagnosis that definitely exists and could be the cause of your symptoms.On the other hand even my LLMD tests for other conditions that could also be an explanation for what's ailing me. That is just good doctoring and good due diligence.

So, I would pursue two courses if I were you: explore other possible explanations to rule out anything else and if that fails begin treating lyme.

It happens a lot where someone thinks they have Lyme but then it's something else.

It also happens a lot where someone thinks they have something else but actually has Lyme.

It pays to be thorough. Lyme is not that treatable when it goes chronic. It's all about the immune system at that point and boatloads of antibiotics. If you have something else -- something treatable -- that's a blessing!

[wonko]

I struggle with the same conflicts, and you've already gotten great advice.

My doctor seems sensitive to this dilemma.  When going over my tests, he asked me a few times in different words how I felt about the diagnosis.  He also warned me that I would not get sympathy with this diagnosis (my addendum:  except from other Lyme patients!).

It was very difficult for me to take this route, given that 4 neuros, 1 rheumy, and my PCP all sternly told me that I didn't/couldn't have Lyme.  I also did a literature search last fall around my first LLMD appt, and kept coming up with all of the A. Steere and L. Sigal papers damning my course of action.  It's quite a departure to ignore the conclusions from the popular literature.  I think we all find ourselves confronted in one way or another with the skeptics and deniers.

Again, I think your questioning of the situation and pursuit to find your own answers will serve you well.  We all go through the doubt and struggle with the climate surrounding Lyme, but I agree with others that it boils down to what works for you and your response to treatment.

[JackieCalifornia]

Small correction to my posting:  I referred to the "CDC/ILADS standards", and meant to type CDC/IDSA [Infectious Diseases Society of America].  CDC and IDSA think the same ways about Lyme.

"ILADS" are the good guys, the ones with open minds about Lyme etc.  [International Lyme and Associated Diseases Society].  Confusing, eh.