I need to find information on the accuracy of the Western Blot. I tested IGENEX positive for IGG. Because of what the infectious disease doc said, my family doc't will never take me seriously.
I will have to go rogue to seek out a diagnosis because I am in Canada, but I will likely need my family doctor to support testing my blood monthly if I am on antibiotics.
I know it is a clincal diagnosis, I just don't understand how it can test a false positive if there is a specific immune response to strictly lyme bacteria. Isn't that like being kinda pregnant?
Can someone let me know if the unreliablity of the Western Blot is due to false positives or false negatives? What is the rate? Is there an information source that I can offer my doctor that she will take seriously?
You ask about the unreliability of the W. blot. Sadly, there is a problem with both the testing and the interpretation of the testing.
There are two tests sometimes given at the same time, one is the Western blot and the other is ELISA. One has a high false *positive* rate, making it suspicious, and the other has a high false *negative* rate, making it also a problem in the opposite direction. The two tests given together are a rough approximation of whether there is an infection, by supposedly balancing each other out, but because the tests are inherently unreliable, they must be read by a doc who takes into account your history and symptoms and doesn't just look at the little boxes on the lab slip. Make sure you get and KEEP copies of those tests, tho, because it helps docs down the line to see older test results -- as the disease progresses, the test results change, and that helps docs know where you are in the process. Take a copy with you to your new doc when you get one, but always always keep your own set.
LLMDs tend to read the tests less rigidly than nonLLMDs, and many LLMDs will also order an IGeneX test called PCR, which looks in the blood not for your immune system's antibodies to Lyme bacteria (as ELISA and W. blot do), but instead for DNA of the actual Lyme bacteria (as I understand it). You can read more about it on the Igenex website if you are interested. Also at ilads [dot] org, under the tab 'About Lyme', the third item down is Dr Burrascano's 'Diagnostic Hints ...', a rather long narrative about diagnosing and treating Lyme. It is meant for medical personnel, but readable by everyone after a bit of practice.
To answer your specific question, "Is there an information source that I can offer my doctor that she will take seriously?", I have to say probably not. This is a very strange state of affairs in science and medicine, in that about 30 years ago, the earliest investigators of the mysterious ailment first recognized around Lyme, Connecticut, locked on to a particular set of symptoms that they identified to track the spread of the disease, requiring the circular rash and/or seeing a tick attached for at least X days, and certain other symptoms. The reason for setting a very high bar for counting an infection as 'Lyme' was to be sure that the epidemological studies tracking the spread of Lyme were accurate and didn't accidentally scoop in a bunch of ant bites or bee stings. So it is very possible to be negative on the tests and still have Lyme.
Unfortunately, those early investigators didn't update their views as more data became available, and those same people are still in positions of authority at the main US group of infectious disease docs, IDSA, or Infectious Disease Society of America. Gary Wormser and Alan Steere are two names you will see if you read much of the IDSA stuff; Wormser and Steere are still entrenched at IDSA and sadly have not updated their understanding of Lyme as more and more is learned about it. The IDSA is 'THE authority' that docs turn to on infectious disease matters, because no doc can keep up with all the changes in medicine, so they look to these specialty groups to guide them -- kind of like relying on Betty Crocker cookbooks for a reliable recipe. The IDSA has infiltrated the CDC, Centers for Disease Control, in Atlanta, so the CDC follows the IDSA position on Lyme as well.
That means any doc who doesn't reach way out of their comfort zone to read the ILADS materials and take them seriously is not going to take Igenex tests seriously either. Docs are conservative by nature, which is normally good, but the Lyme situation is an exception that proves the rule. A fast-spreading 'new' disease like Lyme gets no respect.... I personally remember in the mid 1980s seeing a news conference by the CDC in Atlanta, where a white-coated doc stood up in front of the cameras and said flatly that you could not get the then-new disease AIDS unless you were gay or Haitian. It was an effort to calm down people who were scared that AIDS was as easy to get as a cold, but there was not much that medicine knew about AIDS at that point. And we all know now that you don't have to be gay or Haitian to get AIDS. If only the CDC/IDSA were as openminded about Lyme, but they are not.
There is therefore a split in the medical community, and the IDSA/CDC group thinks the ILADS group is ignorant and committing malpractice on a continuing basis. In some states in the US, docs can be prosecuted or have their medical licenses revoked for treating Lyme outside the CDC/IDSA guidelines, which call for a few weeks antibiotics at most, regardless of how you feel when the meds are done. Lyme bacteria have qualities that are were discovered in recent years but the CDC/IDSA refuse to take into account, specifically (1) a long reproductive cycle (making Lyme bacteria harder to kill, because the short course now prescribed hardly dents Lyme, in that all bacteria are most susceptible when reproducing) and (2) the ability to hide in the body in places where the usual antibiotics can't easily reach, called biofilms.
All this is why docs usually don't call themselves LLMDs ... it's not a formal term, but is one we patients use to identify docs who are more progressive in their thinking. LLMDs can be hard to find, but with the internet available, it's not too hard with a little effort.
Forgot to mention, many nonLLMDs don't know to watch for co-infections, which are other diseases also carried by the Lyme ticks about half the time. And what docs don't believe exists, they don't test for and don't diagnose. When I was really sick with Lyme and babesiosis, one of the ~20 docs I saw was an endocrinologist at a well known and highly regarded university medical center ... she was very kind and sympathetic, and was trying hard to figure out what I might have, and she even tested me for Lyme. The test came back mildly positive, because I (like you) had been sick for a while, and the test results trail off after a while as you've seen. She looked at the test and handed me the result, saying softly, 'Oh you couldn't possibly have Lyme. I have patients with Lyme ... and they are all ... near death.'
OMG. It gives me a chill just to think of that now. I took the positive test result with me and found an LLMD, and the rest is history. That is the kind of blind ignorance we are up against. You are far, far from the only person to have had this situation appear to you as wrong, confusing, and unbelievable. Many of us have been through the same thing you are going through. The bottom line is that nonLLMDs won't look for Lyme and don't recognize it or acknowledge it if they do run across it. It's just not on their radar.
So back to your question: "Is there an information source that I can offer my doctor that she will take seriously?" You can try sending her to ILADS [dot] org, but in my experience, ILADS has been so demonized by the IDSA/CDC that your doc will look at you (1) like you're nuts AND (2) your deodorant failed. I've had it happen to me.
Sorry to run off at the mouth, but thought you should know. Take care, and take heart! You're on the road to figuring all this out. Let us know how we can help --
PS have you checked the canlyme website? you might find a friendly doc through there either to treat you or at least to order tests your llmd wants.
you mention having to get your blood checked monthly for lyme. my llmd ordered tests only ~quarterly, in advance of my follow up appointments so the results would be ready at my appointment. monthly?
i didn't mean to discourage you from trying to get your doc on board with your plan. you might try, but just brace yourself in case the reaction is not what you would hope. you could ask her to look at the ilads website and get her reaction. if you have an otherwise good relationship with her, perhaps she would at least agree to give you blood draw orders as you indicate.
Thanks so much Jackie. This is daunting. I feel like I have to prove that I am sick with unreliable tests and with a disease no one believes in. The best thing that has happend to me is the white matter changes on my brain, so at least I am just not going on anecdotal evidence, and my doctor thinks 'something' is going on.
It is good to know how the chain of command works. I guess I am also sad at the thought that my test could be a false-positive. It is has been extremely hard to deal the boogie man in my brain causing my wires to cross. I just want to shine the light on it.
Why do you think that LLMDs use the Western Blot if it's unreliable?
I have seached high and low for a LLMD in Canada. I just missed the boat for the last- standing LLMD because the college of physicians just threatened him, so now he's practicing under the Canadian equivalent guideline to IDSA. Today's mission is to learn more about that organization.
I will book the llmd across the border tomorrow. I am confident I can find a way to have the bloodwork done.
Yes, it is exceptionally cruel that one is not only very ill, but that the docs are cat-fighting over diagnosis and treatment while the patient is trying to get their attention. But once you understand the terrain, the journey is less scary -- and finding a doc who understands makes a huge difference.
You're holding up well, in that you are, as the engineers say, 'working the problem' -- meaning: trying to find solutions, and continuing to figure out what to do next. Passivity in the face of Lyme is a problem. I've been where you are, and send you all good wishes and encouragement in plowing ahead.
Remember that Lyme remains a *clinical* diagnosis based on history and symptoms. The tests are not the last word, but are helpful as long as the docs don't confuse the test results with Eternal Truth. The tests are not great, but they are better than nothing, in the hands of a skilled doc. It's that 'skilled doc' part that gets complicated to find, but they are out there. As a caution, I have heard some stories of oddball docs who advocate some rather strange treatments, so keep your guard up.
There are two sources of treatment guidance that I look to: ILADS, the main group for LLMDs (who seem to rely primarily on antibiotics) and herbal treatments (meaning supplements and vitamins to support the immune system). I am also interested in infrared sauna and Rife, but have not tried either one, tho others here have. I started out with a Lyme doc who is all-antibiotics-all-the-time, and it worked, but I wasn't getting support for my trashed immune system, so it took another doc to enlighten me about vitamins and supplements that have made a huge difference.
You will have to keep a skeptical eye, because Lyme is a tricky disease that science and medicine are still figuring out. You can do it, tho, and I would do all the things you are doing now. Find a doc, get a work up, get tested for suspected infections, lay out a game plan for treatment. If the first doc doesn't suit, then keep an eye out for another. We've all been where you are, so you are not alone in this.
Thanks Jackie. I am just so happy to atleast have a direction to move in with my illness. I am up for the challenge because it is not any more difficult than sitting around twidling my thumbs wondering why I am sick.
I have a source for an LLMD with good reviews, she had lyme herself. It is a bit of a trek, but I need a holiday.
I read through the ILADS website. It is fantastic. It is very professional and it think it will be a great resource to present to my doc't.
I will also be sending a copy of the flyer for the ILADS conference being held in Toronto to the infectious disease doc't. She could use a little information in that direction. I am almost ready to be shameless.
I think I will do the IGENEX Western Blot Co-Infection test before I see the first LLMD.
In a nutshell, why the resistance to recognizing chronic Lyme? What's the big deal? There must be something for the medical community to lose? Is is just that the IDSA is misleading people, or is there some other reason?
You go, girl! I like your spirit! That is what will get you through Lyme and out the other side.
My LLMD ordered only some of the co-infection tests for me, because he saw me first and got the run down on my symptoms, so he had good suspicions of what I might have. I don't think IGeneX had the full-slate testing back then (a couple of years ago now) and only did specific tests as ordered, and I'm not sure of the costs involved in the full slate. Some of the tests are expensive, and if you're watching your cash flow, then balance seeing the LLMD without test results in hand (and then having to return when the test results are ready) against the cost of doing the full test panel. Given that you have to travel to the LLMD, your approach sounds quite reasonable, tho.
You have asked the million dollar question: why the resistance to recognizing chronic Lyme? I put it down to human failings.
The docs who first studied Lyme, Wormser and Steere in particular, did good work a couple of decades ago, but they stopped moving forward in their research and became wedded to their early conclusions. They built their reputations on those early conclusions and rose in the ranks of the IDSA to positions of much influence. It's like the old kid's story of The Emperor's New Clothes -- it gets past the point where people can back down because their egos are involved.
It won't be until that generation passes into retirement (soon, soon!) and others not so stuck on orthodoxy are able to break through, but a couple more generations of docs have been educated to believe IDSA is righteous, and that will be a battle ongoing. I have a personal friend from childhood who has been a practicing immunologist for decades now. He lives in an area thick with ticks and known for having Lyme, but when I contacted him after I was diagnosed with Lyme and a coinfection just to check on what I was being told, he went off the deep end, telling me I was being misled and treated improperly by my LLMD, and to 'prove' his point, he sent me stuff from ... the IDSA. My friend is a brilliant guy, but he's drinking the koolaid -- which is understandable, because docs can't be total experts on everything out there -- they have to rely on what they read through respected organizations like ... the IDSA and the CDC.
This is a scandal, imho, in plain sight, and I await the day when the truth shall set them (and more importantly, us the patients) free. If you want to read more about it, I highly recommend 'Cure Unknown' by Pamela Weintraub (in paperback now), a medical journalist whose family got Lyme in Connecticut. She tells their story and those of others, woven into the scientific shenanigans that have got us to where we are (and aren't) in Lyme. Excellently written, tho I don't much care for the title.
Mainstream docs are very down on IGeneX, because it produces results contrary to what the IDSA and CDC say -- so IGeneX must be a fraud, right? At least that's how the thinking goes. I have had other docs literally sneer when I told them about my diagnosis and treatment for Lyme+ ... and because these sneering docs do not wish to be party to a fraud, they really didn't want to treat me. I am lucky now to have found a wise doc (for my nonLyme medical matters) who understands that we don't know everything, and that Lyme is a story still in the telling.
So be shameless in educating your doc ... *unless* she is someone you might need going forward, because she might distance herself from you, because if you were somehow said to be harmed by your Lyme treatment, she would not want to be accused of having helped you go that direction. Getting hauled before a medical board is not good for one's ability to continue to practice medicine.
There are some non-ILADS treatment approaches I have read about that sound positively strange to me, so we are in some measure out there on our own. So keep your antennae up, and plow ahead. Take care, stay in touch! Best to you --
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