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280418 tn?1306325910

Friend (MD) is Disagreeing with my Diagnosis Now!

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.....
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523927 tn?1257018704
The dogandticks map was pretty interesting. Most of my Colorado docs scoff at Lyme in being in the state. Yet, Colorado appears to be a second-tier state when it comes to reported dogs with Lyme. Doctors can be so frustrating sometimes with their narrow-mindedness or inflated egos.

I saw a LLMD in Denver this last week and he said there were four new Lyme patients before my afternoon appointment. He still does family practice stuff, but he said half of his patients are now Lymies.
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Avatar universal
fwiw  I'm not saying Steere & Co. cooked the books to come up with their conclusions, just noting their conflicts disclosures.  They make the disclosures so that their conclusions can be held up to scrutiny for conflicts, so that's fine.  It does however show to my mind that the studies they do may more rather than less in line with what the CDC etc. hold to.  

Wonko, you should teach a class on this, or put together a summary of the situation for people to refer to when they come here -- I could never explain it so well, and it's the same over and over, since we're all lambs in the wilderness esp. upon first landing here.  Confused, sick, unhappy lambs.  Baaaaaa.
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428506 tn?1296557399
From "A Critical Appraisal of 'Chronic Lyme Disease'" (H.M. Feder, B.J.B. Johnson, S. O'Connell, E.D. Shapiro, A.C. Steere, G.P. Wormser. N Engl J Med 2007; 357:1422-29:

"Data from three double-blind, randomized, placebo-controlled trials have shown that there is substantial risk, with little or no benefit, associated with additional antibiotic treatment for patients who have long-standing subjective symptoms after appropriate initial treatment for an episode of Lyme disease."

The citations for the 3 studies:

M.S. Klempner, L.T. Hu, J. Evans et al.  N Engl J Med 2001;  345:85-92.

L.B. Krupp, L.J. Hyman et al.  Neurology 2003;  60:1923-30.

R.F. Kaplan, R.P. Trevino et al.  Neurology 2003;  60:1916-22.

(I hope my spelling errors are minimal.)

The argument presented in "Cure Unknown" against these studies is based in how the patients were selected for these studies.  The studies went to great lengths to ensure that the patients in the trial had solid evidence of previous Lyme infection and previous courses of antibiotics.  I forgot the precise numbers, but all three studies together had around 300 subjects in this class of previously established, previously treated Lyme patients.

For this class of patients to not show improvement with extended treatment is not all that surprising, as they were selected as the sickest of the sick with the most water-tight testing to back up their Lyme diagnosis.  It is much more difficult to study how treatment works for  folks (such as myself) who never had an initial treatment or obvious blood tests.

So the question becomes, How useful are these studies when we lack the proper testing and definitions for chronic Lyme?

I have also heard/read that some may feel better on abx due to the anti-inflammatory properties.  On the recent NPR program on Lyme disease, the neuroprotective properties of some abx were also suggested to be the reason for some patients feeling better when on extended treatment.  It was mentioned that the NIH is conducting studies to consider abx in the treatment of diseases such as MS.
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Avatar universal
If they get fees from Merck, wouldn't that meant they support antibiotic or some **************? Obviously, the research they conducted says that the antibiotic routes was ineffective so to me it doesn't matter if they collect fees from drug companies. Now if they collect fees from insurance companies that would be something to squawk about!

Anyways, they did concede that anitibiotics have an antiinflammation property along with antimicrobial, which can explain why some feel better on them. Now, when they say antimicrobial do they mean that it is killing the Lyme???

Oh well. Again, Lyme is a controversial diagnosis right now and will be until the tests confirming its existence is available. But even then, we still need that cure! I hope it's one size fits all.
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Avatar universal
As an aside: Re the spreadsheet tracker comment. I guess a lot of folks use the tracker on this forum. I prefer to tailor my own excel sheet the way I want. I track many symptoms, with cut and paste it's convenient. It's come in handy on a couple of occassions when I was trying to know whether my new symptom was correlated to a side effect of a new drug I was taking. I highly recommend tracking symptoms/drugs/etc.
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280418 tn?1306325910
I was quoting Cindy above.  She said New England Journal of Med.  If this is Wormser, then that explains alot!  I'll look at it for curiosity's sake only  ;)
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Avatar universal
Hope, is this the article you are thinking of?  It's from 2007, 18 months ago, entitled "A Critical Appraisal of 'Chronic Lyme Disease' ":

http://content.nejm.org/cgi/content/extract/357/14/1422

(There is also at the bottom of the first page a list of more recent articles citing to the article.)

Note that Wormser and Steere, Defenders of the Status Quo, are co-authors of the article.  My favorite part is the teeny print at the end disclosing conflicts of interest by the authors.  These people have staked their careers, finances and reputations on the phrase 'there is no evidence that...' and are disinclined to look beyond their stated positions.  Grrr.  
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280418 tn?1306325910
"The Journal of New England Medicine has a famous one that all conventional doctors seem to be citing when treating it and that is that they rounded up all the folks with "post lyme" tried antibiotics for six months in a double blind research study and found that it didn't help. So, with so many of us still sick, it looks like we need a new drug altogether. And that has yet to be determined."

This is bothersome.  I would like to read that study, b/c I'm still fearing treatment a little.  Do you know what the title of that article is?  
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Avatar universal
There simply needs to be more research and there isn't any that I'm aware of -- seriously. I know Brian Fallon at Columbia is doing something but they make us pony up the money to participate so forget it. They never returned my calls either way.

University of Louisville is in the process of patenting their test. And it is definitive. That will at least tell us we have it or we don't.

As for curing it, I believe it's possible. But it seems different for each person. Some people require this or that combo of antibiotics for years and years to be cured. And others another combo. So, since it makes no sense whatsoever, more research and then more research is needed. The problem is the symptoms vary from person to person. While some have headaches and buzzing in their feet, someone else has joint pain and brain fog. So, if you cannot agree on what you're treating, it tends to stall the research. That's what I read happened and was told that from a doc. They need to have baseline symptoms or some such thing for a double blind research project to get off the ground.

The Journal of New England Medicine has a famous one that all conventional doctors seem to be citing when treating it and that is that they rounded up all the folks with "post lyme" tried antibiotics for six months in a double blind research study and found that it didn't help. So, with so many of us still sick, it looks like we need a new drug altogether. And that has yet to be determined.
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280418 tn?1306325910
Whew, I love debating this stuff, it needs to be done.  We are the people that are going to find answers and bring Lyme awareness to the forefront.  Who else will, other than those suffering the symptoms?  We care the most, obviously.  

I have to get that book pronto.  I'm glad to see that I'm not the only one questioning the lab differences, politics, etc.  The more we keep up this type of dialogue, the closer we get to the truth.  Time will tell as well, but I'd like to get better ASAP of course.  I guess that's why we are left with choosing our path of treatment using our own instincts and opinions.  Customizing our treatment in a way that makes us most comfortable sounds like the best plan and I think we need to attempt a scientific approach to everything we read, experience, etc.  I'm really considering developing a spreadsheet to track my symptoms prior to, during, and after treatment.  This type of thing may already exist (?).  The more we discover, the less future Lymies have to suffer.  
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Avatar universal
Actually, it's not unknown how the CDC/IDSA diagnostic criteria were arrived at -- there are others here more scientifically inclined than I who can explain better why the testing is so messed up, but the book Cure Unknown tells the twisted story in detail, esp in pages 310+.  It's worth reading, if for no other reason than to understand the extent to which we the afflicted are held hostage by a tangled mass of politics, money, and pride.  It's not a simple difference of opinion, but a much more complicated story.  Once I understood the depth of the problem, I began to understand what I was up against and my decisions about treatment were easier.
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Avatar universal
I agree with everything you've said: that the criteria are arbitrary (and frankly unknown how they were arrived at to begin with) and that there are various factors that can give measurement variation.

I was just stating what seems to me that in general, Igenex finds more positive response than the other labs. I believe that goes along with the belief by many that it is also more valid than other labs. For me personally, I don't know what to make of it. Since IDSA and ILADS are so far opposed, it is also not surprising that different labs with different views (IDSA and ILADS philosphy) are also likely to yield different results.
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Avatar universal
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.
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Avatar universal
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.
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373367 tn?1246402035
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.  
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Avatar universal
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!
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428506 tn?1296557399
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.
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Avatar universal
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.
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280418 tn?1306325910
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.
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Avatar universal
"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".
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280418 tn?1306325910
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.
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Avatar universal
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.
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Avatar universal
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.
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280418 tn?1306325910
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:)
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