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What tests are the best for Lyme Disease?
Hello everyone,
I need help. My mom has been sick for over a year now. In Spring 2007, she fell and injured her knee badly, and her health hasn't been the same since. The worst started last fall when she woke up one day and was nauseous, was dry heaving daily, and could barely get out of bed for 6 months. She pretty much missed the holidays, nearly missed a family vacation (she was ok for the first few days and then got really sick again on the cruise ship), and has had to quit her job. She ended up having her gall bladder removed, but that only helped for about a month, the nausea came back.
She's had tests that show she's had all of the fun viruses, EBV, human parvo, mono, etc. She was also diagnosed with Interstitial Cystitis 5 or 6 years ago, which isn't really related to her symptoms, but is an autoimmune bladder disorder. For the pain, she was diagnosed with fibro and rheumatoid arthritis. She's only 47 years old. Something is wrong, she's seen about 15 different doctors, and none have come up with anything. We're kind of at our wits end, every day is a different day and I don't really know what to do to help. Some days she's fine, just doesn't feel good in the morning, always tired, and not her old self. Those are what we call "good days". The bad days she can't get out of bed. Just last week she spent 6 days in bed, couldn't even bare the thought of getting up to shower
We live in Orlando, and though she and I both have read and seen on TV things about lyme disease, her doctors aren't paying much attention. They say it just doesn't happen here, Lyme disease is only up north. Well, I know that is ****. My brother in law, who also lives here, just found out his dog has Lyme disease. If a dog can get it, so can a human. My parents have 2 dogs, and though they don't show symptoms and aren't typically in an environment where they can get a tick and they are both fine, anything is possible. Plus, I've read Lyme can lay dormant for years, if not decades. She grew up in Northern Michigan and then lived in Iowa.
My question has 2 parts...how the heck do you get a doctor to test you and what tests should they run?! From what I've read, it seems results can be a false negative or inconclusive. Please, anyone who can help or knows of a specialist in the Orlando area, or even just our region, let me know! I just want her to get better and I want my old mom back. Any help or advice will be much appreciated.
I need help. My mom has been sick for over a year now. In Spring 2007, she fell and injured her knee badly, and her health hasn't been the same since. The worst started last fall when she woke up one day and was nauseous, was dry heaving daily, and could barely get out of bed for 6 months. She pretty much missed the holidays, nearly missed a family vacation (she was ok for the first few days and then got really sick again on the cruise ship), and has had to quit her job. She ended up having her gall bladder removed, but that only helped for about a month, the nausea came back.
She's had tests that show she's had all of the fun viruses, EBV, human parvo, mono, etc. She was also diagnosed with Interstitial Cystitis 5 or 6 years ago, which isn't really related to her symptoms, but is an autoimmune bladder disorder. For the pain, she was diagnosed with fibro and rheumatoid arthritis. She's only 47 years old. Something is wrong, she's seen about 15 different doctors, and none have come up with anything. We're kind of at our wits end, every day is a different day and I don't really know what to do to help. Some days she's fine, just doesn't feel good in the morning, always tired, and not her old self. Those are what we call "good days". The bad days she can't get out of bed. Just last week she spent 6 days in bed, couldn't even bare the thought of getting up to shower
We live in Orlando, and though she and I both have read and seen on TV things about lyme disease, her doctors aren't paying much attention. They say it just doesn't happen here, Lyme disease is only up north. Well, I know that is ****. My brother in law, who also lives here, just found out his dog has Lyme disease. If a dog can get it, so can a human. My parents have 2 dogs, and though they don't show symptoms and aren't typically in an environment where they can get a tick and they are both fine, anything is possible. Plus, I've read Lyme can lay dormant for years, if not decades. She grew up in Northern Michigan and then lived in Iowa.
My question has 2 parts...how the heck do you get a doctor to test you and what tests should they run?! From what I've read, it seems results can be a false negative or inconclusive. Please, anyone who can help or knows of a specialist in the Orlando area, or even just our region, let me know! I just want her to get better and I want my old mom back. Any help or advice will be much appreciated.
It would be great for you to go with your mother to the dr: I take paper and pen and a list of questions to my LLMD and other dr appointments, and I try to take notes, but I don't do it very well ... too much happening too fast and too many questions in my head. It's partly the Lyme+ and partly being nervous.
Your skill in dealing with ins. cos. will come in handy too. Your mother is fortunate to have you on her side.
The IC specialist may or may not react positively to the Lyme aspect, but I would bring it up definitely. All MDs know there is a brouhaha about Lyme, and as a result tend to treat patients who don't snap out of it -- as you said -- as crazy. Been there, will spare you the stories.
Keep us posted on your travels -- it will be interesting to hear from you given your familiarity with medical/insurance stuff.
Your skill in dealing with ins. cos. will come in handy too. Your mother is fortunate to have you on her side.
The IC specialist may or may not react positively to the Lyme aspect, but I would bring it up definitely. All MDs know there is a brouhaha about Lyme, and as a result tend to treat patients who don't snap out of it -- as you said -- as crazy. Been there, will spare you the stories.
Keep us posted on your travels -- it will be interesting to hear from you given your familiarity with medical/insurance stuff.
Hi Patsy,
I have never heard that before! My mom is seeing her IC specialist next week, so we'll definitely ask them some questions about that! I'm going to start going with her to the Dr, cause they all just seem to think she's crazy.
Thanks for the info!
I have never heard that before! My mom is seeing her IC specialist next week, so we'll definitely ask them some questions about that! I'm going to start going with her to the Dr, cause they all just seem to think she's crazy.
Thanks for the info!
Jackie,
Thank you so much for the information. I fear we will have little luck with her regular MDs, but I will certainly look into finding a specialist. My mom and I both definitely understand the struggles to get needed care and what a pain in the rear insurance companies can be. We both work for a Clinical and Behavioral Therapy practice. I fight with insurance companies daily to try to get treatment covered for kids with autism and other special needs. I will definitely keep you guys posted!
Thanks Again!
Thank you so much for the information. I fear we will have little luck with her regular MDs, but I will certainly look into finding a specialist. My mom and I both definitely understand the struggles to get needed care and what a pain in the rear insurance companies can be. We both work for a Clinical and Behavioral Therapy practice. I fight with insurance companies daily to try to get treatment covered for kids with autism and other special needs. I will definitely keep you guys posted!
Thanks Again!
Jackie posted excellent information. I just wanted to add that interstitial cystitis is a condition associated with lyme.
and PS, I see as I re-read my post and yours that I didn't directly answer your two questions: how do you get a dr to test you, and what tests should they run?
Unless you see an LLMD, convincing an MD to run a test they don't believe in is not likely to happen. An LLMD is a regular doctor who can be a GP, an internist, an infectious disease dr, any kind of MD, but one who has a special interest in and broad view of diagnosing and treating Lyme. Some but not all LLMDs are members of ILADS, mentioned above. It is a voluntary group, and a dr can be an LLMD without belonging to ILADS.
I have asked (begged would be closer to it) MDs to run certain tests, and most of them refuse. A recent MD said "It would be a waste of your money." And when I replied that no, it would not be, the MD still refused. In my experience, MDs get very stubborn when it comes to anything related to Lyme.
The standard tests for Lyme, ELISA and Western blot, are not very good and miss many infections. There are other tests run by specialty labs such as Igenex which are more accurate and are often used by LLMDs. The trick with Lyme is: the tests are SO imprecise that they cannot be relied upon as 'yes you do' or 'no you don't'. The diagnosis of Lyme is supposed to be a CLINICAL diagnosis, meaning one based on symptoms and informed by test results, but NOT overridden by test results. Unfortunately nonLLMDs think the tests are the final answer, and what seem to be Lyme cases are turned away despite their symptoms.
So back to where my message started: find an LLMD to assess your mother's condition. NonLLMDs confronted with a request to test and evaluate for Lyme often get mulish and refuse outright, and even if they DO agreet to test, they almost always use the inaccurate/insensitive/nonspecific ELISA and Western blot tests and then rely solely on them to make a diagnosis. The reason for this approach is that the CDC (Centers for Disease Control, funded by your tax dollars) says that is the right way to do things, and there are also lots of politics in play among the MDs who refuse to see what is right in front of them.
(If you are interested and have the time, there is a book called 'Cure Unknown' by Pamela Weintraub which explains how things in the medical community got to be so messed up when it comes to Lyme. The title is unfortunate, because I think a bigger problem than finding a cure is getting mainstream medicine to acknowledge the DISEASE. If you're not appalled and madder than he** when you start the book, you will be by the time you finish it, and then you'll reread it like I did. It will explain all the mystery and resistance you are seeing in your mother's MDs. There are none so blind as they who will not see ... and that is what we are up against.)
There's the answer to your question: I don't think a head-on approach is likely to work with your mother's MDs -- they cling to the CDC position, and the politics are thick and heavy in all this. Find an LLMD asap even if you have to travel to do it. Your insurance may or may not cover it, and LLMDs don't always take insurance, I think because many insurance cos. say the LLMD treatment is 'not mainstream.' So if your are like me, you end up paying out of pocket and then getting a small reimbursement from the insurance company. But what is more important than health, after all. (I fear the government taking over health care for exactly this reason: as soon as the government says that the CDC approach is right and must be used, which is what the feds are almost certain to do if Obamacare passes, then we will be unable at *any* price to get the treatment our LLMDs prescribe. Chilling and terrifying. It already happens in Canada because of their restrictions on treatment.)
But I wander here. My best *nonmedical* advice (I am not medically trained, but do have Lyme): find an LLMD. Sometimes the first LLMD you see may not hit you right, because the field is so new and squirrely, and some LLMDs have some odd ideas ... but at least you can pack up and go to another LLMD if you get a bad feeling about the approach. Start tomorrow! Good wishes to you all. Stay in touch.
Unless you see an LLMD, convincing an MD to run a test they don't believe in is not likely to happen. An LLMD is a regular doctor who can be a GP, an internist, an infectious disease dr, any kind of MD, but one who has a special interest in and broad view of diagnosing and treating Lyme. Some but not all LLMDs are members of ILADS, mentioned above. It is a voluntary group, and a dr can be an LLMD without belonging to ILADS.
I have asked (begged would be closer to it) MDs to run certain tests, and most of them refuse. A recent MD said "It would be a waste of your money." And when I replied that no, it would not be, the MD still refused. In my experience, MDs get very stubborn when it comes to anything related to Lyme.
The standard tests for Lyme, ELISA and Western blot, are not very good and miss many infections. There are other tests run by specialty labs such as Igenex which are more accurate and are often used by LLMDs. The trick with Lyme is: the tests are SO imprecise that they cannot be relied upon as 'yes you do' or 'no you don't'. The diagnosis of Lyme is supposed to be a CLINICAL diagnosis, meaning one based on symptoms and informed by test results, but NOT overridden by test results. Unfortunately nonLLMDs think the tests are the final answer, and what seem to be Lyme cases are turned away despite their symptoms.
So back to where my message started: find an LLMD to assess your mother's condition. NonLLMDs confronted with a request to test and evaluate for Lyme often get mulish and refuse outright, and even if they DO agreet to test, they almost always use the inaccurate/insensitive/nonspecific ELISA and Western blot tests and then rely solely on them to make a diagnosis. The reason for this approach is that the CDC (Centers for Disease Control, funded by your tax dollars) says that is the right way to do things, and there are also lots of politics in play among the MDs who refuse to see what is right in front of them.
(If you are interested and have the time, there is a book called 'Cure Unknown' by Pamela Weintraub which explains how things in the medical community got to be so messed up when it comes to Lyme. The title is unfortunate, because I think a bigger problem than finding a cure is getting mainstream medicine to acknowledge the DISEASE. If you're not appalled and madder than he** when you start the book, you will be by the time you finish it, and then you'll reread it like I did. It will explain all the mystery and resistance you are seeing in your mother's MDs. There are none so blind as they who will not see ... and that is what we are up against.)
There's the answer to your question: I don't think a head-on approach is likely to work with your mother's MDs -- they cling to the CDC position, and the politics are thick and heavy in all this. Find an LLMD asap even if you have to travel to do it. Your insurance may or may not cover it, and LLMDs don't always take insurance, I think because many insurance cos. say the LLMD treatment is 'not mainstream.' So if your are like me, you end up paying out of pocket and then getting a small reimbursement from the insurance company. But what is more important than health, after all. (I fear the government taking over health care for exactly this reason: as soon as the government says that the CDC approach is right and must be used, which is what the feds are almost certain to do if Obamacare passes, then we will be unable at *any* price to get the treatment our LLMDs prescribe. Chilling and terrifying. It already happens in Canada because of their restrictions on treatment.)
But I wander here. My best *nonmedical* advice (I am not medically trained, but do have Lyme): find an LLMD. Sometimes the first LLMD you see may not hit you right, because the field is so new and squirrely, and some LLMDs have some odd ideas ... but at least you can pack up and go to another LLMD if you get a bad feeling about the approach. Start tomorrow! Good wishes to you all. Stay in touch.
Your mom is lucky to have you. A strong champion is something every ill person needs, and with possible Lyme, all the more so.
We may have some Florida members here who can comment, but a good place to start is at the website ILADS [dot] org which I believe has a referral function where you can request a referral to an LLMD (an MD who takes a more 'progressive' view of Lyme and its coinfections) in your area. ILADS has a great deal of useful material on its website. Among other information, there is a link there to Dr Burrascano's discussion of Lyme, and he has many interesting things to say.
Also you can google 'how to find an LLMD' and add your city or metro area and/or state.
Coinfections are the extra diseases besides Lyme that the same ticks often carry. Each coinfection (some of them are: babesiosis, bartonella, ehrlichiosis) has its own symptoms and treatments, separate from Lyme, and if you have Lyme and one or more coinfections, your symptoms can be quite different than if you have just one of the diseases. Also the medications for each disease are different, so getting treated for one doesn't mean you killed the others. There is testing that can be done.
You seem to have a pretty good grip on Lyme and the way things seem to work in the part of the medical community that doesn't 'believe' in Lyme as a serious, life-altering disease. You are right, vets are more knowledgable about Lyme than MDs. Many of us never know when or where we got the disease(s), and even the CDC says Lyme is the fastest spreading vector-borne disease in the US. I personally never saw the tick that bit me, and I never got a rash, let alone a bullseye rash, which are signs most mainstream MDs demand.
There are a number of mysterious ailments including the ones you mention above (chronic fatigue, fibromyalgia, etc.) which some suspect are related in some fashion to Lyme+, but no one really knows at this point, I don't think.
Best wishes to your mother -- and let us know how it goes. Take care.
We may have some Florida members here who can comment, but a good place to start is at the website ILADS [dot] org which I believe has a referral function where you can request a referral to an LLMD (an MD who takes a more 'progressive' view of Lyme and its coinfections) in your area. ILADS has a great deal of useful material on its website. Among other information, there is a link there to Dr Burrascano's discussion of Lyme, and he has many interesting things to say.
Also you can google 'how to find an LLMD' and add your city or metro area and/or state.
Coinfections are the extra diseases besides Lyme that the same ticks often carry. Each coinfection (some of them are: babesiosis, bartonella, ehrlichiosis) has its own symptoms and treatments, separate from Lyme, and if you have Lyme and one or more coinfections, your symptoms can be quite different than if you have just one of the diseases. Also the medications for each disease are different, so getting treated for one doesn't mean you killed the others. There is testing that can be done.
You seem to have a pretty good grip on Lyme and the way things seem to work in the part of the medical community that doesn't 'believe' in Lyme as a serious, life-altering disease. You are right, vets are more knowledgable about Lyme than MDs. Many of us never know when or where we got the disease(s), and even the CDC says Lyme is the fastest spreading vector-borne disease in the US. I personally never saw the tick that bit me, and I never got a rash, let alone a bullseye rash, which are signs most mainstream MDs demand.
There are a number of mysterious ailments including the ones you mention above (chronic fatigue, fibromyalgia, etc.) which some suspect are related in some fashion to Lyme+, but no one really knows at this point, I don't think.
Best wishes to your mother -- and let us know how it goes. Take care.
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