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.....
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.
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.
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/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).
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. :)
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:)
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.
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".
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.
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!
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.
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.
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.
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.
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.
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.
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.
"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?
(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.
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.
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.
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.
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.
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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