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.....

[Hope75]

Wow, so much to learn, so little time.  I'll check out those websites.  I did have a chronic fatigue panel done and I was positive for:

CMV
HHV-6
HSV-1

Although I realize we are all exposed to some of these at different times of our lives, but my doc suggested these were above normal levels.  I've never seen the lab results myself though.

[PlateletGal]

"if the antibiotics work, I'lll have an answer."

Hi Hope75,

Actually... the majority of CFS, fibromyalgia, autism and people who have autoimmune diseases have bacterial infections. So if you have herxing symptoms, that doesn't necessarily mean that you have the lyme bacteria. I have CFIDS/ME and yet I was on antibiotic therapy and now Jernigan's formulas. I have all of the same herxing symptoms that lyme patients have.

For more information, visit The Institute of Molecular Medicine's website --- http://www.immed.org  and click on "fatigue illness research" or "autoimmune disease research".

[Hope75]

Good points patsy and amyloo.  I, too, am in healthcare and thought most things were cut and dry.  Well, not Lyme.  Wow.  

I forgot to mention that I would like to see what that professor said about the controversy.

[Amyloo]

Well said Jackie.

You know, I've always wondered why the negative western blots are always "true negatives" but the positives just 'have' to be "false" postives?!  Riddle me that, Batman.

[patsy10]

I did not test positive through Igenex but I had the bullseye rash, was very, very sick with neurolgical and other things and I recovered from taking antibiotics.  It does not matter if lyme is not as common in your state.  It only takes one.  It is not common in my state either but trust me, it's here.  You could have even got it travelling to another state.

I was very skeptical until I started getting better.  Especially since I work in the healthcare field.  At this point it doesn't matter to me what other people think.  All that matters is I can live my life.

[Hope75]

This is great information.  I haven't seen my WB from John's Hopkins.  I will request a copy on Monday.  I think you are right SoonerMom, if the antibiotics work, I'lll have an answer.  I am going to buy the "Cure Unknown" this weekend, if its at the local Barnes and Noble.  If not i'll get it online.  I looked at every place (on the veterinarian maps) I've lived in my life and they all have reported cases of Lyme.  I'm sure that that it is horribly low compared to the real numbers.  

If someone is CDC positive, isn't it automatically reported, or do they not listen to Igenex?  I hope that story about Igenex's founder is correct, or at least close.

The veterinarian question is excellent.  In fact, I have to take my cats tomorrow!  I'll be asking the Lyme question for sure.

Once again, great information.  I will rest easier tonight.  PS...I worked out, at a healthy meal, and drank alot of water.  I'm trying to get ready for treatment as if I were for a marathon:)