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Dr. Elena Frid is a board certified Neurologist, who treats vector borne illness and autoimmunity in New York, New York. If you have Lyme you have probably heard of her, because she is a strong Lyme advocate, spreading information to various publications and online. On her website it says "Through social media, medical publications, and community "call to action" speaking engagements, Dr. Elena Frid has committed her time to bring awareness to medical colleagues, patients and families across the united States." This article was originally published in Dr. Frid's Newsletter and she has given me permission to publish it here:
Interpreting Lyme Test - Not So Easy
I have been writing to you about my involvement with Lyme disease and other tick borne illnesses for over six months. Through the letters one can see the vast involvement and damage these disorders can cause and can present in many different ways often mimicking other conditions. In my practice, I primarily see patients who have been undiagnosed for months or even years, often not receiving any treatment or not being treated appropriately.
Part of the frustration in the Lyme community is the fact that there is no one good test that is accurate. The test that we have now is up to 50-70% inaccurate in some instances. In turn, if you test negative for Lyme disease on regular blood work--it doesn't mean you don’t have Lyme. In fact, recently the state of Maryland signed a bill into law that requires health care providers warn patients in writing that Lyme disease testing can be problematic and standard laboratory tests often result in false negative and false positive results.
So what do we do? Well, my suggestion is educating yourself which is the reason for this newsletter.
When a Lyme test is ordered through a regular lab, it goes through a two tier approach: ELISA and Western Blot - WB (3 IgM Antibodies and 10 IgG Antibodies) screening test. When the ELISA test comes back positive, only then a Western Blot test will be run, which tests for specific antibodies for Lyme disease. If you tested for ELISA and 2 out of 3 IgM Antibodies came back positive on WB, you are positive for Lyme, or positive for ELISA AND 5 out of 10 IgG Antibodies positive on WB=you have Lyme.
The issue: a patient may falsely test negative for ELISA and so the bands will never be run/reported, or patients may test positive for a number of bands but not enough to meet the CDC/IDSA guidelines delineated above.
Another important point is that not all WB IgM and IgG bands are created equal. If you speak to Lyme Literate Doctors (LLMD) they will tell you that some bands are more or less specific for Lyme disease. Therefore, many LLMDs look at quality of the bands not quantity in conjunction with assessing the clinical picture including physical findings. Bands that are considered to be Lyme specific according to the International Lyme And Associated Diseases Society (ILADS) guidelines: 18, 23, 30, 31, 34, 39, 93.
Please note that some LLMDs also advocate the use of specialty laboratories to test for Lyme and associate diseases which many report is a more accurate way of looking for serologic evidence of exposure to tick borne illnesses.
Take away points:
Thank you Dr. Frid for sharing this important information. Education is the best line of defense. She has asked that if you have a specific topic you would like to hear from her about to please leave a comment and she may write an article to address it. Visit Dr. Frid's website. You can also follow her on Twitter and YouTube.
"Sometimes courage is the quiet voice at the end of the day saying 'I will try again tomorrow.'" - Mary Anne Radmacher
This article was first published on the Global Lyme Alliance blog on February 10th, 2017. Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
The test result email popped into my inbox. I was driving and couldn't look until I was stopped at a red light. This was it. The final clue in a seemingly never ending mystery. The diagnosis I'd been waiting almost two years to get. Two years of crippling health anxiety, and a slow steady decline, all resting on one simple blood test.
Many people who are eventually diagnosed with Lyme disease spent years leading up to it searching for the right diagnosis. Because of poor diagnostic tools, we've had to learn to be our own health detectives.
My journey started almost three years ago.I’d been ill for many years prior, but doctors assumed all my symptoms related to an autoimmune condition, Grave;s disease. Then, in May of 2014, my right leg started to feel "heavy" and was aching. I looked down and noticed it had blown up like a balloon. I ended up in the ER. At first, the doctors took it seriously, because they thought it was a blood clot. After the test came back negative, I was quickly discharged with no answers.
I went to my primary care doctor and she told me to wait a month and see how I felt. I immediately found a new doctor and he told me that unless the swelling was more than two inches different from the other leg I should simply ignore it. Ignore it? I was just supposed to walk around with a swollen leg for the rest of my life? No tests were ordered, no follow-up appointments were scheduled, so I moved on to another doctor, and another, and another.
Like a detective on an important case, looking up symptoms on the internet became my full-time job. I'd get lost down a Google rabbit hole for hours on end. My husband would practically have to pry my fingers from the keyboard.
Every time I discovered a new lead I would follow it as far as it would take me, usually to another annoyed doctor, who'd send me away with an exasperated look. This continued for six months. Then I developed a new strange symptom a stabbing pain in my side. Again I went to the emergency room. This time I was admitted after a MRI revealed what looked to be an infection in my spine. It took the doctors five days to determine the infection wasn't spreading rapidly enough to cause immediate concern. I was discharged again with nothing but another piece of paper with the diagnosis left blank.
From there I was passed between a rheumatologist and infectious disease doctor for another six months. When I went to see the rheumatologist, he said it was an infection; when I went to see the infectious disease doctor he said it was rheumatological.
But I didn't give up. I found an integrative medicine doctor who was willing to think outside the box. She ran some preliminary tests for Lyme disease, and when they came back suspect, she referred me to a Lyme-Literate Medical Doctor.
Those two years were some of the most difficult in my life, but I had to stay on the case. Here's some advice on how to keep moving forward even when the puzzle seems impossible to solve.
How to Be Your Own Health Detective:
1. Start thinking like one.
From the very first symptom, everything is a clue. Keep an ongoing list of every symptom you experience. Even if it doesn't seem like an important one, write it down. Keep a folder of all your test results. Compare and contrast the results over time. You never know what will end up being the missing link.
2. Ask the right questions.
Make a list of all your doctors. When a question pops into your mind, write it down under the heading of the best doctor to answer that question. By the time of your next appointment, you will a have a thoughtful list of questions to ask.
3. Be confident in your symptoms.
Before I had a diagnosis, I found that many of my symptoms were minimized or ignored by doctors. Some of these symptoms seemed small on the surface, but ended up being the most important clues. Don’t allow a doctor to tell you a symptom isn't real, is all in your head.
4. Set boundaries when using the internet.
Google and Internet forums are a good tool for health detectives. The problem is it can become an enormous waste of time and energy. Some good boundaries to set are to spend no more than 15 minutes a day researching symptoms or asking questions on forums. Make sure you verify everything you read with a trusted doctor; there is a lot of dangerous misinformation on the internet.
5. Talk about your illness.
When you talk about your symptoms with other people, sometimes they have good input. For example, back when my leg first became swollen, a friend of my mother suspected an infection. This was something none of the doctors had mentioned, but I kept it the thought in the back of my mind. It turned out she was right.
6. Never, ever, ever give up.
The worst thing you can do for your health is to give up. Sure, you'll hit brick walls, but you'll have to learn to break through them. Nothing is more important than your health, so you have to keep exploring until you feel satisfied with your care. If you can afford it, get a second opinion (and a third, and a fourth). Determine how far it is reasonable for you to travel and how much it is reasonable for you to pay, and then go to the best doctor you can find who fits within those parameters.
I was stopped by that red light for just long enough to open the email. I was scared to read it. What if it’s just another negative test to add to the list? But it was "positive." After two long years of no diagnosis and countless doctors, I had my answer. I had Lyme disease. When you receive a diagnosis it can be a strange mixed moment of emotions. You are devastated to have the illness naturally, but even more so you are grateful to finally know what it is. My detective work paid off.
"You learn you can do your best even when it's hard, even when you're tired and maybe hurting a little bit." - Joe Namath
Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
by Genevieve Goetz
Anyone who has ever walked into a new yoga studio knows that nervous feeling of not knowing what to expect: where the props are, where to put your mat, which direction to face. We look to the regulars who already have their space all set up, as they talk to their friends or meditate. The yoga teacher is there to show you around, answer questions, and get you set up for class.
For someone with a chronic illness, going to a new yoga studio can be terrifying and overwhelming. Your body has very specific needs, and you may not know what poses help or hurt. Class times are hard to attend due to fluctuating symptoms. Mobility can be minimal. Maybe like me, you only leave the house rarely. Medical equipment could be attached to your body, or used for movement.
None of that means you cannot have a healthy, routine yoga practice. The benefits of yoga are vast, and can turn a terrible day into something wonderful. Whatever "limitations" you may have are an opportunity to find modifications of poses and new ways to explore yoga. Yoga is not a competition. There is no judgement or failure. It's all just practice. So give it a try. But first, here are my tips you should know before trying a class:
Tips for Spoonies: How to Start a Yoga Practice:
-You can begin your own personal practice, at your own pace. Take the anxiousness about trying something new and ease it with the knowledge this is all on your terms.
-Yoga is whatever we want it to be, whatever we put into it.
-Yoga does not have to be a long, vigorous class or an intimidating handstand seen via social media.
-Start out small.
-Take rest breaks, even if you are in the middle of class and everyone else is standing.
-You know your body best. Rest is also very important in yoga, we practice it at the end of every class. Don't feel embarrassed about feeling differently than the person next to you. Yoga does not judge or compare. It's a purely individual practice.
-Drink extra water to flush toxins after class. Lots of yoga poses detoxify the body, muscles, connective tissues and more.
-Observe what helps and hurts your body so you can modify your poses in practice. If you feel a sharp, shooting pain during a pose that instinctively tells you to stop, then stop. There is a big difference between causing further injury than just feeling uncomfortable, needing to take a few breaths and reevaluate.
-Talk to any future teacher about you, your body, and your needs. Most yoga teachers at studios are trained for 200 hours. I only had 10 hours on anatomy during my training. Fortunately I have studied it for years after. When I was a beginner teacher, I was very uncomfortable giving advice or modifications for people with injuries and illnesses. You may really have to simplify your symptoms when meeting a new teacher, and make sure they are understanding you.
-There are teachers with 500 hour trainings, specialty certifications, and yoga therapists that could be a better fit for you. Do a little background search on the teacher and studio.
-Regardless of training, all yoga teachers want to connect with their students so be open minded on building an ongoing relationship with them. The teacher could really get to know your needs.
-Yoga is not treatment, a doctor, a cure all or a band aid.
-It's always more fun to do yoga with friends.
-Keep a yoga journal on how you felt before and after class, what the class was like, what worked for you. Before you know it, you have plenty to work with going forward in your practice.
-I prefer to practice a gentle, restorative class and sometimes add strengthening poses in. I've lost a lot of tone due to atrophy and I want to work on getting it back.
-If attending a studio, look for: gentle, restorative, yin, and beginner. Those are fairly passive classes that most can attend.
-If you cannot attend yoga classes outside the house, there are many options for yoga online. There are many teachers on YouTube (again do background research that it's right for you).
-If you don't want to move at all, join a local meditation group, or listen to meditation podcasts at home.
"The soul is here for its own joy." - Rumi
I'm Kerry (She/Her/Hers) and I am a licensed therapist, group facilitator, poet, writer, & speaker. This is a place to acknowledge and validate our suffering and trauma, while also learning how to turn toward aliveness and spaciousness.