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 am sorry you are in this situation; in one way or another, I think most of us have 'been there':  dragging our sick bodies from one doctor to another and being told over and over we either aren't sick or have something else.  I'm sure your friend means well, but the source of information for MDs in these modern times is no longer their eyes and ears and talking to patients, but what they are told by the CDC ... and if the CDC is wrong or deluded, well, that's just too bad for the patients.  

I know the reaction well.  I have a lifelong friend who went to a top medical school decades ago and is a fine 'physician' (as doctors like to be called) ... but when I told him about my Lyme, he *sneered* at me.  That was very hurtful, that he would not even give me the benefit of the doubt that perhaps it was true.

SoonerMom is right, get a copy of 'Cure Unknown' by Pamela Weintraub -- as little as you feel like reading right now, it is a comforting book to dip into every so often -- I read it in bits and pieces and then went back and read it front to back.  It is very, very well written by a Lyme patient who is a trained science writer and it is not at all boring.  It will explain a lot, and it will give you hope and understanding as it relates the stories of people the author interviewed, some of them scientists and doctors who encountered Lyme as patients themselves.  She also weaves the politics of Lyme through the whole book.  Highly recommended.  And oh yeah, I bought a copy and sent it to my friend, the sneering 'physician.'

Platelet Gal is correct about veterinarians being much better informed about Lyme.  If you google 'Lyme disease', a lot of the hits are about animals.

I believe that Lyme is NOT a 'reportable' disease required by law to be reported to the health authorities, such as AIDS.  Therefore Lyme is underreported, on top of being hard to diagnose because the tests are imprecise.  (Incidentally, the restrictive CDC standards for diagnosis, with a bullseye rash and a positive ELISA and then a positive Western Blot, were written intentionally to set a very high standard for surveillance purposes of how widespread the disease is and not for diagnosis, yet it is those very high standards that people like your friendly neighborhood MD cling to as diagnostic.  All this is discussed thoroughly in Cure Unknown.)

I have read the same story about the founding of Igenex labs, about father and son.  Igenex reports on a longer list of Lyme indicators found in your blood, a list that includes highly Lyme-sensitive markers the CDC/ILADS standards don't include, so OF COURSE the Igenex tests would show more positives, because the tests are MORE ACCURATE.  (This has happened because the CDC test excludes those highly reliable Lyme markers because some CDC doctors patented a Lyme vaccine that didn't work, but its use would have conflicted with using that marker in Lyme testing [once vaccinated, you would always test positive for those markers, so the markers had to be excluded from the Lyme test]).

This conflicting information will not stop any time soon, and so you have to pick your path.  You can change your mind and your path at any time, and your treatment will likely vary over time from what others of us receive -- for example, I've never had doxy, but it's a common treatment; each patient, each infection, and each doctor is different.  I often question my doctor and ask for a change in treatment based on how I am feeling or concerns I have about the reported side effects of a drug that is proposed for me.

We all have our doubts and fears, and they come and go over time, which is why we keep checking in here, sometimes more often than other times when we are feeling vulnerable.  

Standard apologies for running off at the mouth here.  It's how I try to feel less vulnerable myself.  :)

[PlateletGal]

Q. Where is Lyme disease found?

A. Lyme disease has been detected in all 50 states and each year cases are reported in more areas of the country. While the Northeast and upper Midwest typically have the largest per capita populations of deer ticks, the Pacific Northwest has isolated clusters of western black-legged tick populations, and no region is completely without risk. Find out how common tick-related diseases are in your area. See disease maps to find out how many reported cases of Lyme disease and other tick-borne diseases there have been in your local area.

http://www.dogsandticks.com/faqs-lyme-disease-dogs-tick-diseases/

http://www.dogsandticks.com/US-map-lyme-disease-dogs/index.html -- states where tick-borne illnesses are found (I suspect the numbers are a LOT higher than what is actually reported, especially knowing that many, many people who have lyme disease are still undiagnosed).

[PlateletGal]

I'm so sorry about what you are going through. You know I strongly disagree with your friend and know that many physicians are clueless or in denial when it comes to lyme disease. I'll give you an example.... if you take your pet to the vet with any little health problem, they automatically mention lyme disease and want to test for lyme !

So why is it that veterinarians care more and seem to know more about lyme disease than our physicians do ?

There have been so many politics involved with these illnesses (CFS, lyme, etc.). Did you read Prof. Nicolson's comments about the politics of lyme disease and how the seriousness of lyme has been downplayed by the medical profession ? If you'd like I will repost the comments he made to a MedHelp member.

[SOONERMOM]

I had some things said to me online like this right after getting my positive IgeneX test.  What was funny was that a lot of people (most people) that I knew tested  through IgeneX WEREN'T CDC positive like myself.    I would think that your "negative" WB from Johns Hopkins probably had some positive bands, did you ever see it  for yourself??

I was told a story on another forum, that I haven't verified myself yet, about the founding of the IgeneX lab.  The owner of Igenex used to have a son sick with lyme disease.  He founded the lab so that there could be better testing for those of us sick with tick borne illnesses.  His formerly sick son eventually became an LLMD and now works at IgeneX with his dad.  Anyway, I like to think they really try to get it right because they have "been there" before.

Do yourself a favor and buy the book "Cure Unknown".  It really delves into all the controversy starting at the beginning.

I am still disturbed by all the conflicting evidence...believe me!!!  I guess when it boils down to it, if antibiotics help and nothing else has... then you have your answer.  that is what I keep coming back to over and over.

I am in a state where there have been like 4-5 people reported to the CDC in the last 10 years.  What was funny was that after I was diagnosed and started asking around, I found out that a family across the street (we are all on acreage) had all tested positive years before and their next door neighbor had a recent MS diagnosis.  Another friend that lives 3 miles away tested  positive by spinal tap and is in a wheelchair.  I guess my point is that in certain states, cases reported means NOTHING...I wasn't reported and I had 7 positive bands on IGM and was CDC positive.

I remember reading an article about how lyme disease was really on the rise in Virginia.....so doesn't it make sense that it would be in NC also?  I guess my advice to you would be to educate yourself on it all and give treatment a try.  If it works, that means a lot more than one neurologist's opinion about lyme disease.  Honestly, I think if they recognized the scope of lyme disease, a lot of neuro's would be out of business.  They really don't try to prevent diseases, just treat the symptoms.

Hang in there and don't get too discouraged!

Stacey