There are so many people who live their daily lives with all sorts of weird symptoms, that they can’t quite put a finger on it. Perhaps you have been to various doctors and no one can figure out whats wrong. Perhaps your symptoms come and go and are so varied that you don’t think they are connected in anyway. Since they come and go you are not quite sure what to make of it and if its really caused by one thing or if you are just tired. Your body is stiff and achey but you think that is just a part of “getting old” or a result of an old injury. Your mind is not as sharp as it used to be, but you know you are under constant stress and brush it off. Perhaps your doctor has told you that you have some sort of Autoimmune Disease but they are not quite sure exactly what and the labs you have done don’t confirm anything. Perhaps your doctor has told you its all in your head and prescribed anti-depressants and anti-anxiety pills. Perhaps your doctor has told you that all your labs look perfect and that there is nothing wrong with you, but you know there is something wrong. Well maybe you have Lyme Disease and your regular doctor or specialist is not going to diagnose you with it.
I don’t want to sound fanatical here and I realize that every time you have some sort of weird symptom its not always going to be Lyme. But by the same token, Lyme is in epidemic numbers here in the US and most doctors don’t know a thing about it or how to diagnose it properly. Lyme can mimic over 300 different symptoms and many other chronic diseases making it difficult to diagnose. It is commonly referred to as “The Great Imitator” and doctors are not aware of all the symptoms it can cause and how prevalent it is today. Furthermore the testing that most western doctors rely on is completely faulty, leaving you with a coin toss as to whether you have Lyme or not, if you can even get your doctor to test you for it.
So what should you do if you have a bunch of symptoms, and no one has been able to quite put their finger on a diagnosis. Perhaps you have come across a symptom list for Lyme or Co-Infections and it sounds familiar? You talked to your primary care doctor and they told you it’s not Lyme Disease that you have, that its something else but they just can’t tell you what it is (This happened to me!). They refuse to test you for Lyme, and if they do test you they will only test through LabCorp or Quest, who’s Lyme test are completely useless.
The first step I recommend you take is getting an appointment with an LLMD or LLND which is a Lyme Literate Medical Doctor or Lyme Literate Naturopathic Doctor. You can find one by searching on ILADS. Most people get diagnosed with Lyme with a clinical diagnosis which is based on signs and symptoms. Even the CDC has admitted that this is the best way to get diagnosed with Lyme and that testing is only helpful if used correctly as a secondary aid, but not as a diagnosis. Can you believe that? There is no proper testing to see if you really have Lyme and even worse, once you are treating there is no way to test to see if the Lyme is gone! For a disease that the CDC admits has 300,000 new cases per year, that is a bit irresponsible. HIV has proper testing and there are only 50,000 new cases per year.
Your primary care doctor will most likely know nothing about Lyme, if they even believe in Chronic Lyme. If you are lucky to have them test you for Lyme, they will most likely be using the ELISA (Labcorp / Quest) test which is basically a coin flip and very inaccurate. If they believe you may have Lyme, and you for some reason get a positive test, they will probably only want to give you 2 weeks of antibiotics which will do nothing when Lyme has become chronic. There are many reasons why you will have a negative Lyme test but still actually be positive and infected with Lyme. I will be writing a blog post on this matter soon. For the time being you can check out this post on Tired of Lyme that goes in to details of how you can have a negative test, but still be positive for Lyme.
The best testing for Lyme right now is through Igenix Labs and a Naturopath or LLMD will be able to run that test for you and also read your results. The Igenix test is a Western Blot and it tests for “bands” that are antibody markers specific to Lyme Bacteria. Depending on which bands are present, an LLMD will be able to diagnose you for Lyme as well as though a clinical diagnosis of symptoms. As a patient you are able to order this test yourself and take it to a lab to draw. You will however need a doctor to sign off on it, so thats where it gets tricky and you really need a doctor that will believe in Lyme and Igenix testing to do that. Its best to start with the Igenix IGM and IGG Lyme test which will cost around $240 and insurance will not cover it. Order test array number 188 and 189. I know having to pay for this out of pocket will put some people off, but its the best $240 you will ever spend and if you do in fact have Lyme it will save you years of misdiagnosis that you will get instead.
It frustrates me so much that our “regular" or primary care doctors are the first ones we go to when something is not right and they are not educated to deal with this impending epidemic. Lyme is a very controversial disease, mostly due to political and financial conflicts of interest. Doctors don’t learn much about it in medical school and the information I have heard being shared by doctors about it is all over the place. Some do believe in it and prescribe the proper 4-6 weeks of antibiotics needed to kill it as soon as you get bitten, while others give no antibiotics or 1 pill only so that down the road that patient will have 100’s of symptoms and they won’t even remember the bite or think that it could have caused the issues they are currently experiencing. So many doctors also do not believe in Chronic Lyme which leaves thousands of people misdiagnosed or not diagnosed at all which leads to years of suffering before they finally find out they have Lyme. Lyme is curable if treated right away after a tick bite, but the problem is many people do not know they were even bitten and it takes years to get a proper diagnosis. The longer Lyme goes untreated the harder it is to treat. If you are lucky to see the bulls eye rash or are flu like after a tick bite, you have been infected with Lyme and need a minimum of 4-6 weeks of antibiotics, or this will come back to haunt you for the rest of your life.
There are many patients that don’t remember a bite at all (Me!). All of the sudden their health started decaying and weird symptoms started coming on. Doctors told you there is nothing wrong and your labs are perfect, but deep down, you knew something was wrong. Finally a good doctor did the proper testing and found out you were being taken down by Lyme and you have no idea how you got it.
I know how frustrating it can be to know something is wrong and not have a label on it or a diagnosis. Its especially frustrating when doctors, who you think are saviours can’t figure it out or refuse to help you. It took 2 years for me to properly get diagnosed and I am really horrified by the fact that it took that long. I was seeing my doctors constantly telling them something was not right. Why was a Lyme test not one of the first tests they gave me? Why did my primary care doctor get mad at me when I told her it could be Lyme? She shook it off so adamantly that it was not Lyme and that I had some sort of “Autoimmune Condtion, but she was not sure which one.” She did not even follow through and test me for these potential Autoimmune Diseases. She just brushed it off and hoped I would go away. Well if she was so sure it was not Lyme then why was she so UNSURE of what else it could be. Well guess what, I did have Lyme and now a year into treatment I am 60-70% better. It could have saved me years of feeling like I was dying and completely turning my life upside down. It would have saved me thousands of dollars if just one doctor had the knowledge to test me sooner, but none of them did.
I urge you that if you are on a similar path to see a LLMD and get Lyme ruled out as your problem right away. The initial appt will probably cost you anywhere between $200-500 but will be worth every penny. LLMD’s have been some of the most patient and caring doctors I have ever met. They take the time to really hear about your symptoms, your medical history and most importantly they work with you to figure out what is wrong, whether its Lyme, Co-infections or something else like Mold Illness, Autoimmunity, Allergies etc. They are the doctors that help you when no one else can figure out what is wrong. They are the ones that get people after they have been through the ringer of quack doctors that can’t figure out what is truly happening to you. They are the ones that take the time to ask the right questions and do the right tests to get you back on your way to health. I chose to work with an LLND and follow a more natural and integrative approach since naturopaths tend to look at the root problem rather then just put a band aid on symptoms. If you would prefer to do a more western approach an LLMD would be a better fit.
Testing though Igenex for the basic Lyme test is about $240. Once you do that test and see how the results are you can add on Co-infection tests that the LLMD thinks may also be an issue. Sometimes you can have Co-Infections without Lyme. Sometimes you can have Lyme and every possible Co-Infection like I had. It really depends on how many pathogens the tick that bites you has. Common Co-Infections to check symptoms lists on are Bartonella, Babesia, Anaplasmosis, Rocky Mountain Spotted Fever, Ehrlichia, Mycoplasma, Brucellosis and many more.
I really believe that the Igenix Lyme test is a test that everyone should take if you are having any sort of medical problems or ailments. The symptoms for Lyme are so elusive and always changing that its really hard to put a finger on what it is. If I had known everything I know about Lyme back when my story started, it would have been one of the first tests I ever did. Lyme is notorious for turning on Autoimmune Diseases as well, so if all of the sudden you have a new Autoimmune Disease or two, make sure to get checked for Lyme as the underlying cause. Keep in mind that you can still have a negative Lyme test, and have Lyme, so some LLMD’s start treating you to see if you then test positive once the bacteria start to be treated.
I am hoping that by sharing my path, I can help people realize that Lyme is epidemic and it is important to rule it out no matter how much an initial appt and test costs. I would hate for someone not to know if they have Lyme because they are put off by the cost of diagnosis. The sooner you figure out if Lyme is your issue, the sooner you can treat it and start getting your life back. The longer you have Lyme, the more difficult it is to treat and get better.
Remember you don’t need to be “outdoorsy” or in nature to get Lyme. You can get it in the city, you can get it in your house. You can get it anywhere. Your pets can bring infected ticks in and birds and mice carry infected ticks into cities. I have only been camping 4x in my entire life and I got Lyme my 4th time. I don’t hike, I don’t go in nature. I am a total city slicker and I got it. Its scary how prevalent it is and whats even scarier is that our doctors know nothing about it and are misdiagnosing thousands of people and creating a tremendous epidemic.
Common misdiagnosis are Chronic Fatigue, Fibromyalgia, MS, ALS, Parkinson's, Alzheimer's, Lupus, Rheumatoid Arthritis, Autism, ADHD, Depression and Anxiety, or my personal favorite “It’s just in your head”. There are so many layers as to how you can be misdiagnosed with Lyme, yet still be positive, it is really up to the patient to fight for the diagnosis and make sure you ask for the proper testing.
Keep in mind that all your labs and blood work typically look totally normal when you have Lyme so even if your doctor says your labs are normal, but you don’t feel right, it is an even bigger reason to rule out Lyme. Even when I was at my sickest and bedridden my labs were perfect, but I was far from.
So the bottom line, if you are having chronic weird symptoms and your doctor has not been able to figure it out, check out a list of Lyme and Co-infection symptoms and see an LLMD. LLMD’s are very familiar with treating people that are undiagnosed or misdiagnosed and will more likely be able to help you get the diagnosis and treatment you need.
With chronic unknown health conditions its really important for you as the patient to fight for your diagnosis and make sure no stone is unturned. Its unfortunate doctors are not more helpful in the Lyme world, but the least you can do is be informed about Lyme, get tested with Igenix Labs and find a LLND/LLMD to work with.
If you want more information on Lyme and how it is easily misdiagnosed check out the documentary Under Our Skin. It is a really great resource that gets into the trials and tribulations of Lyme as well as why its so hard to diagnose. It can be streamed for free on Youtube and Hulu.