Lyme Test

Lyme Disease Testing: Why It Continues To Fail To Properly Identify Lyme Disease

When I was working as a microbiologist in the early 1990’s, Lyme testing was still pretty new and we didn’t know much about Lyme disease and all of the nuances of testing that would soon follow. Now that it is 25 years later, we have learned a great deal about Lyme disease and the pitfalls of Lyme testing have been revealed. Here is a brief excerpt from my upcoming book on Lyme disease, “The Lyme Solution: A 5-part Plan to Fight the Inflammatory Auto-Immune Response and Beat Lyme Disease”.

The current recommendation by the CDC for someone who is suspicious of having Lyme disease is to run a two-step process. The first step is to run a Lyme antibody blood test, which measure two types of antibodies against Lyme disease (immunoglobulin G or IgG and immunoglobulin M or IgM). If this test is positive, then a second test called a Lyme Western Blot should be run to confirm the results of the first test. The Lyme Western Blot looks at a series of specific antibodies against the Lyme organism for both IgG and IgM. If someone has at least 5 out of 10 antibodies for IgG or 2 out of 3 antibodies for IgM, then the Lyme Western Blot is considered positive. The CDC does not recommend doing a Lyme Western Blot IgM test on anyone whose illness occurred within the past month.

Conventional immunology teaches that the immune system will undergo a predictable immune response after exposure to a microbe, with IgM being the first antibody to respond to an infection, followed by the production of IgG in later stages of the illness. By that logic then, someone who has an IgM positive test would suggest his or her exposure to the Lyme organism was recent and someone with an IgG positive test would indicate a past infection. But in Lyme disease, this does not necessarily hold true. One study found that in 55 people with known Lyme disease, less than 46% of them had either IgG or IgM antibodies on their initial Lyme screen test. I have seen patients with IgM antibodies that we suspect their exposure was from many years prior and others with IgG positive antibodies that was a recent exposure. So the current testing does not distinguish between active and past infection and is an unreliable marker for when someone may have been exposed to an infected tick.

I should point out that the criteria for determining if a Lyme Western Blot test is positive is based on a CDC-led scientific group that included the FDA and State laboratory directors back in the early 1990’s. This group held several meetings and their conclusions were published in 1995. So in more than 20 years of studying Lyme disease, these outdated criteria are still used today. We have since learned that some of the antibodies that we test for are specific to Lyme disease and other antibodies are not specific to Lyme, but may reflect exposure to some other type of microbe. To complicate this further, there are now over 100 known strains of Borrellia in the United States and over 300 species worldwide and the Lyme testing is primarily looking for only one type (Borrellia burgdorferi). For example, we now know that many cases of Lyme disease on the West Coast of the United States is caused by Borrellia miyomotoi, which does not get picked up on the Lyme Western Blot. So it is possible that some patients who experience Lyme disease symptoms and have a negative test, may actually have a different strain of Lyme disease that the tests do not detect. It is surprising that with everything we know about Lyme disease and the antibodies associated with it, that the CDC has yet to alter its criteria to reflect the current research.

There are several inherent problems with Lyme disease testing that often lead to misdiagnosis or lack of diagnosis. Perhaps the most troubling problem with the Lyme screen test is that it is not a very sensitive test and can miss someone who has Lyme disease. The College of American Pathologists, who develop guidelines for screening blood tests, state that a good screening test will pick up at least 95% of the people who have the condition for which the test is being used. However, one study found that the currently used Lyme screening test does not meet these criteria and can therefore fail to identify if someone has had exposure to Lyme disease. To make matters even worse, since the CDC guidelines do not recommend doing a Lyme Western Blot if the Lyme screen is negative, your doctor may easily skip over the more sensitive and specific test that might help show if you have been exposed to Lyme disease.

There are also no official guidelines for tests that may considered borderline or equivocal. I have seen many Lyme Western Blot tests where patients only have 4 out of 10 IgG antibodies instead of 5 required to call the test positive. Or they only have 1 out of 3 antibodies for IgM, but the one antibody they have is a Lyme-specific band. Since the tests are actually measuring the amount of antibodies, the cut-off for these tests assumes each patient exposed to Borrellia has the same exact immune response. It seems the stringent criteria established by the CDC have failed to recognize the diversity of the human population and immune responses. If someone has several Lyme-specific antibodies, even if they do not meet the CDC criteria for calling the test positive, isn’t that important? Isn’t that kind of like being a little pregnant? I have seen enough of these tests to realize that patients with Lyme disease symptoms who have borderline tests, especially when they have Lyme-specific antibodies, usually respond well to treatment.

The other major problem with Lyme disease testing is that it is only measuring antibodies and does not directly measure the bacteria itself. Like all antibody tests, it is dependent on the person’s ability to have a strong immune response when they have exposure to a virus, bacteria or other microbe that can cause infection. The assumption is always that if a tick that carries Lyme disease has bitten someone, the person will have a significant antibody response. While in theory that sounds good, the reality is that many people who end with chronic Lyme disease may not have a healthy immune system to start with and therefore, do not produce antibodies in the amount needed to get rid of the infection or be picked up on a blood test. To complicate this further, antibody levels can fluctuate as time goes on. I have seen hundreds of patients who get Lyme Western Blots done at regular intervals and the antibody levels can change from test to test. It can be maddening, as a patient as you would expect that antibody levels would go down once treatment had begun. However, this does not usually occur and each antibody can increase, decrease or go away completely with each test for reasons that are not well understood. This observation speaks to the complexity of the immune system and that antibody levels do not necessarily drop at a continuous rate.

The methodology behind Lyme disease testing has long been a point of controversy among treating practitioners and part of this is due to differences in the laboratories themselves. The test kits that each lab uses vary and this may alter the sensitivity of the testing itself. The major reference labs around the United States tend to have similar testing methods, but some specialty labs use a different methodology, which seems to have improved the sensitivity of the testing. The strain of Borrellia used to perform the test makes a significant difference in the outcome and not all labs use the same strain. I only use labs that use the strains that yield the best results, such as Medical Diagnostic Laboratories or IGeneX.

The bottom line is that Lyme disease is ultimately a clinical diagnosis, which is based on your symptoms and ruling out other causes of your illness. False positive Lyme tests are rare where false negative tests are common. Make sure to work with a Lyme-literate doctor to ensure you get good testing, a proper diagnosis and treatment.

 


Pink Ribbon

Breast Health: The Benefits of Thermography

The month of October brings the country’s focus to Breast Health, specifically, raising awareness on Breast Cancer. As we are reminded of those who we have lost and those who continue to fight this horrible disease, we can’t help wonder if there could have been another test or warning to predict the situation sooner.

Detecting breast cancer can be tricky and mammograms are often the recommended screening tool. However, having a mammogram can be a complicated process. First, women with dense breasts often have suspicious lesions, such as benign lumps that can be mistaken for breast cancer, causing unnecessary worry. Secondly, mammograms are a type of x-ray that expose the breasts to ionizing radiation, which poses its own set of risks to the breasts themselves. While the mammogram is the most commonly practiced breast cancer detection device, there are other methods, such as the thermogram, that have less impact and side effects on the body.

Thermography, otherwise known as thermal imaging, is the analysis and assessment of the heat given off by the body’s tissues. Thermal imaging measures the heat that it sees and gives it different colors in relation to the range of temperatures present. Heat = inflammation. It’s especially helpful in detecting cancerous cells as they require a continuous source of blood.

And since an extra development of blood flows, we begin to see the formation of new blood vessels, otherwise known as angiogenesis. As there is more blood flow to the cancerous cells, there is more heat. This extra heat gets picked up in the thermal imaging when compared to the generally even distribution of blood and heat to the body.

Thermograms are effective at detecting breast cancer in women and, in Western medicine, is seen as a complementary diagnostic following a mammography. A major difference between a thermogram and a mammogram is in the overall health risk that each test presents. A mammogram uses radiation to detect for breast cancer, which can be argued that the process alone can actually increase the risk of cancer itself. A thermogram does not use radiation, rather picking up on the natural processes going on in the body and any changes in it that might seem unusual.

With the increase of wireless communications, EMFs and countless other sources of radiation, our bodies are already absorbing larger quantities of radiation than in previous generations. Adding consistent testing for early detection of breast cancer through mammograms can be an extra risk.
Balancing out the risks of using certain diagnostic procedures for detection is very important. Breast cancer risks increase with age and mammograms seem to be more effective at catching breast cancer in later years. Thermograms play an important part in the breast cancer screening process, as they can detect the blood vessel growth that lays the foundation for future cancerous cell growth, much sooner.

Why you should consider a thermogram:

1.  Early detection: Cancerous cells require lots of blood flow and resources to continually grow, this increases overall heat in the body area as more resources and movement occur. The thermogram picks up on this heat increase earlier than a conventional mammogram. Early detection means a better chance of survival and less extreme or invasive treatment protocols.

2. No radiation & less invasive: Mammograms require putting pressure on the breast tissue and then exposing the tissue to x-rays, a form of radiation that can increase cancer risk. A thermogram does not use radiation at all.

3. Cost effective: thermography is relatively inexpensive compared with mammography and may be repeated if indicated with no risk of adding more radiation to the body.

Thermograms are effective in detecting all types of breast cancer, except a type called ductal carcinoma in-situ (DCIS). However, DCIS is classified as stage 0 cancer or actually a precancerous condition, but not actually breast cancer. In a study from the Annals of Internal Medicine in March 2017, researchers found mammography led to an almost 50% rate of overdiagnosis and overtreatment. Another study in 2012 found that for every 2000 women screened over 10 years, only one will avoid dying of breast cancer, where 10 healthy women in the same time frame will be treated unnecessarily.

In naturopathic philosophy, the focus is on healthy living, preventive medicine and healing. While we always address the root cause of any disease, our first line of therapy is to do no harm. This includes safe diagnostic procedures with the least amount of risk.


Couple holding hands

When Lyme Takes A Toll On Relationships: How To Find Love & Happiness When You're Chronically Ill

It is no surprise that stress and poor health go hand in hand as one tends to precede the other. Physical, mental and emotional stress can wear on a person’s physical body and feeling terrible everyday can be equally stressful and lead to its own set of problems. When you are living with chronic Lyme disease or other persistent illness, you do your best to put on a happy face, go about your day and try to function in the world. We’ve been trained to pull up our boot straps and “toughen up” and being vulnerable is a sign of weakness. But this is the reality many of us have faced or continue to deal with every day.

What the world often does not see is the pain we experience, the numbness in our limbs, the fogginess in our brain and the tears we hide from our loved ones. Despite our best efforts to feel well, progress can be slow or sometime even worse with certain treatments. We often rely on others to lean on in times of need for various degrees of assistance. But perhaps no one feels this more than our spouse, partner, boyfriend or girlfriend who share our lives together daily.

I have seen many people with Lyme disease and other chronic illnesses over the years have difficulty maintaining a long-term relationship or developing a new one. The stress of caring for someone with Lyme disease can leave them feeling angry, resentful, helpless and sometime hopeless. “Why don't you just get better?”. “You need to get over it”. “You look fine. I don’t see anything wrong with you”. “Why are you always so tired? Can’t you just get more sleep?”, “Just snap out of it!” Any of this sound familiar? The expectations can be shattered when you don’t fit the image of what your loved one thinks you should be capable of and this often leads to disappointment, anger and blame.

So how do you keep your current relationship healthy, despite your health issues or how do you cultivate a new relationship while working on getting well? I wish I could say it’s easy, but it’s not. It takes a lot of work from both sides to make it work. But here are my tips to working toward a healthy, happy relationship with your significant other.

1. Be honest. Tell your partner how you are feeling and have ongoing communication about what you can do and take on. I think many of us feel the need to shield our partner from how we feel to protect them or to make us appear stronger than we are. This doesn’t help either person and can lead to an unrealistic expectation of your abilities. Best to have that honest conversation so that they know how you’re doing and feeling and can understand you better.

2. Stand in their shoes. As much as they need to empathize with you, you need to have the same understanding for them. They will never fully understand what you feel daily, so don't expect them to. I can tell you from experience that watching someone you love suffer is miserable and extremely stressful. Your partner suffers in their own way, whether they share those feelings with you or not. This is hard on both of you and acknowledging their suffering can go a long way in developing a deeper understanding of one another.
3. Get outside help. I see this being the problem most often in couples that are more isolated and have a small to nonexistent support network. As much as your partner loves you, they probably didn't anticipate being your ongoing doctor, therapist, psychiatrist, etc. I have seen the most supportive, loving partners reach their breaking point where they can no longer handle being the sole supporter during your recovery. Having a good professional on your team can help take the stress off your partner’s shoulders.

4. Find a local support group. There is strength in numbers and being able to share your thoughts and feelings in a safe environment with others who have similar struggles can be a relief and encouraging. You have a place where you meet regularly to help others and be helped. If you don’t have a local group that meets on an ongoing basis, there are several online groups available as well. I prefer the face to face meetings and the human connection can be more powerful, but I talk with so many people who are isolated that an online group can be a fantastic way to connect with others. Find what works for you and gives you that space to connect with others.

5. Have fun together. When you are feeling unwell, it’s easy to forget that you and your partner probably used to do things together that was fun. Find those things that bring you both joy, whether it is watching a funny movie, enjoying a meal out, riding bicycles, hiking or even playing a board game together. The important thing is you connect with one another emotionally and bring enjoyment into your lives.

Lyme disease creates so many physical and emotional challenges for us and it’s important that our partners walk with us during our road to recovery. I’ve seen marriages and long term relationships fall apart in the face of chronic illness and sometimes we have to let go of relationships that no longer meet our needs or might even be toxic. Underneath the veil of Lyme disease is a loving, caring person who has so much to offer to the right person. Take these steps so you and your partner understand each other well and enjoy a fulfilling life together!


Beach

How to Self Care with a Chronic Illness

Living with a chronic illness can be extremely difficult. You struggle with feelings of anxiety, loss of control of your own body, guilt, pain, anger and exhaustion. Every day will challenge you. As you look around at your friends and family, it might cause you to feel guilty that you may not always be able to join in at gatherings or go out and have fun like you use to do. All of these feelings are not abnormal. In fact, they are very rational, and if you spoke to anyone with a chronic illness, they would agree they probably feel the exact same way.

If you continue to work, you must find time to take care of activities of everyday living, such as taking care of children, spouses, household chores, and work. Then there is you: Your needs. What happens when you are at the bottom of your To Do list? The outlook isn't good. You have probably heard the expression “You can't pour from an empty cup" ? Well, that’s absolutely correct! Living with illness is already an enormous stressor, draining your cup steadily. This adds to your stress tremendously, threatening your health even more. If there is anything I have learned as a holistic practitioner, it’s that self-care should be your priority.

I teach this to my patients, as well. I want to share a few tips that I have learned over the years and hope you find them as helpful as I do.

It's ok to say No

Setting boundaries is necessary when it comes to reducing your stressors and maintaining self-care. Let friends and family know that while you love to do social things such as going out, you're not able to at this time. Saying no does not make you a bad person and it certainly doesn't mean you don't care. Saying no means that you are giving yourself the space you need to heal.

Saying yes just to make others happy can cause resentment on your end.  If they continue to pressure you or try to persuade you into saying yes and it makes you uncomfortable, you may need to put some distance between you and that person for some time. There is no need to feel guilty about this. It will only help your physical and mental health in the long run.

Prioritize yourself

If your list of To-Do’s don't include you at the top, then you need a new list.  Schedule yourself first, whether it’s doctor’s appointments, massages, acupuncture, therapy, exercise or whatever it is that helps reduce stress and anxiety for you. Taking care of you will allow you to heal and thrive. This, in turn, will allow you to now give some of your time and energy to others because you have taken your own time to self-care first.

Eat for health, you deserve to feel good

When you eat poorly, you are depriving your body of good health.  Fast food, processed food and refined sugar wreak havoc on your health, including your gut. It can cause blood sugar fluctuations, digestive issues, inflammation, as well as mood swings. Your gut communicates to your brain, so when your food choices are poor, your mental health suffers, as well.  Focus on fresh vegetables and fruit. Also, eat non-processed organic, pasture raised meats, poultry and wild fish ( if you choose to eat animal protein) and include healthy fats. These nourish the gut and help increase beneficial bacteria while balancing blood sugar and sending healthy signals to the brain.

Don't be afraid to ask for help

It's bad enough that you already feel guilty for being chronically ill. Don't let fear or pride get in the way of asking for help. If there is something you can't accomplish, it's not the end of the world. Just let someone know you need some help with certain things and that you're very appreciative and grateful for their help.

Make laughter a habit

Laughter has been shown to relieve stress and boost the immune system. Laughing makes you feel good and can reduce anxiety. It can also boost immune function. Additionally, it helps to relax your muscles and increase pain tolerance in the body. The physical benefits of laughter are many. While we sometimes have a difficult time drawing laughter from our lives, the benefits are not to be ignored.

Optimism

A positive attitude can make all the difference, especially when you are not feeling well. Have you ever been cut off in traffic while you were in a really good mood?  Chances are, it didn't bother you as much as when you're having a bad day or were in a negative mood. That's because optimism can help frame the way that your body reacts to a negative stressor. If you do not perceive a negative stressor to have a major impact on the state of your mood, then your body will not consciously perceive the stressor as that great of a threat. This means that an optimistic frame of mind can reduce the impact of a stress reaction. And the reduction of stress hormones can reduce inflammation in the body. This is where practicing an optimistic state of mind can lead to health benefits.

Self-care means different things to different people. Everyone's journey is unique so do what makes YOU feel good and never forget to self-care. That means being able to heal so you can be the best version of you, and everyone benefits from that.


Scared Boy

Childhood Trauma & Autoimmune Disease

Many things can determine the possibility that autoimmune disorders develop as we age. Genetics, nutrition, stress, toxic exposure and infections can all weaken and attack the immune system. These are all factors that have been studied for a long time. However, what we are now realizing is the fascinating connection between autoimmune disorders (that show up later in life) and childhood trauma.

These events, called Adverse Childhood Experiences (otherwise known as ACEs), have had a profound impact on the health of adults later in life. Events included physical and emotional abuse, the loss of a parent, and continual lack of support or neglect within a family structure. These are all identified as Adverse Childhood Experiences and can result in a long-term exposure to stress, leading to health issues as an adult.

The research behind this was conducted by the Centers for Disease Control and Kaiser Permanente in 1996. Called the “ACE Study” in short, the study was published in the American Journal of Preventive Medicine in 1998. Patients who were identified as experiencing an Adverse Childhood Experience ended up developing higher rates of cancer and mental health issues compared to adults who had not.

Long-term stress can also increase the risk of autoimmune disease in someone who has had an Adverse Childhood Experience. The key is in the gene that is activated after the stressor has occurred. The human body has a series of responses to stressors that vary greatly according to each situation and person. However, one such response is the flood of inflammatory stress hormones that can result from a traumatic experience. This inflammatory response can activate a series of genes that contribute to autoimmune disease.

Dr. Donna Jackson Nakazawa persisted to further examine the possible link between Adverse Childhood Experiences and autoimmune disease based of her own experience. While her personal story is powerful, it may not necessarily be supportive of the majority of people. In her adult life, Dr. Nakazawa was diagnosed with Guillain-Barré Syndrome, an autoimmune disease that attacks the nervous system. While seeking treatment, she was asked by her own doctor about any past trauma in her life. It turns out that her doctor was one of few doctors seeing a link between trauma and the chronic, systemic inflammation she was suffering from as a symptom of her illness. Her doctor decided that this question was an avenue worth pursuing.

Remembering the loss of her father at age 12 due to a botched surgery, it opened up the discussion of the possibility of childhood trauma that lead to her autoimmune issues. Connecting these two together, she has been an advocate for more research on childhood trauma and adult illness. Since then, hundreds of studies have backed up the Kaiser Permanente-CDC led study, though there is still a lack of awareness regarding this health issue.

Being in a constant state of stress resulting from traumatic experiences can be taxing and lead to many ill health effects. This chronic stress reaction leads to an increase in the inflammatory response, which can result in long-term chronic illness development.

Recognizing that your past childhood experiences can influence your health is an important step in healing. It’s important to consider a holistic protocol for total well being, in order to have a beneficial impact on the past trauma to reduce the body’s “auto pilot” reaction. While treating the body is good, treating the mind and its awareness of stressors can help the body to heal on all levels and increase your quality of life.


Sad Woman with Lyme

Yes, Chronic Lyme Is Real

Record breaking heat in the summer, and much warmer winters, have contributed to a spike in the general population of ticks. These ticks carry Lyme disease, a neurodegenerative bacterial infection with symptoms ranging from arthritis to depression to severe brain fog.

The bacteria, scientifically known as Borrellia burgdorferi or other species, is a master shape-shifter and mimics many other illnesses. We also know that Borrellia has a knack for being able to hide from the immune system. In fact, it hides much better than many other common bacterial infections. This means that it is harder for the immune system to attack and destroy the organism that causes Lyme. For that reason, doctors usually prescribe an intense and prolonged regimen of antibiotics to try and destroy the Lyme-causing bug.

Antibiotics can sometimes be effective, especially in the very early stages of Lyme disease, but these antibiotics become less effective as Lyme disease become more persistent. Recovery from Lyme disease is different for every individual. While some Lyme patients recover quickly, more often than not, people infected with Lyme are either misdiagnosed or underdiagnosed and never receive proper treatment and end up with post-Lyme syndrome or more commonly known as chronic Lyme disease.

A tick bite can also transmit co-infections, such as Babesia, Bartonella, Anaplasma, Mycoplasma, Rickettsia, Powassan virus and many others. These additional infections can also create additional symptoms related to Lyme disease. This further complicates a diagnosis as other, unique symptoms can be connected to a co-infection.

All of these major details make it difficult to create a treatment protocol to combat Lyme. Conventional medicine believes that rigorous antibiotics courses are strong enough to get rid of Lyme and its coinfections for good. But for those who continue to suffer from Lyme after the antibiotics, the road to recovery can difficult and unknown.

The truth is, chronic lyme exists. This kind of infection is long term and takes a long term, tailored strategy of treatment. Most conventional medical doctors believe that Lyme disease can be cured with a 3-4 week course of antibiotics, but it’s much more complex than that. And this is where the controversy begins.

The CDC recognizes that post-Lyme syndrome exists, but offers no real treatment options and suggests it is a rare complication of Lyme disease. While we don’t know how many people suffer from post-Lyme syndrome, but it is likely in the millions worldwide. There are at least 300,000 new cases of Lyme disease in the United States each year alone and research suggests up to 50% of these people will develop persistent Lyme disease or post-Lyme syndrome. Many insurance companies fail to cover long-term treatment of Lyme disease and there is no consensus on which treatments are best for post-Lyme syndrome.

I know it exists because I am one of those people. After being infected in 2002, I went through my own battle to overcome Lyme disease, post-Lyme syndrome and multiple sclerosis. It has been through diet, herbs, immunotherapy, stress management, exercise and other natural therapies that have helped me get to where I am today. It is not easy or quick. But it is possible.

If you have been told that chronic Lyme disease doesn’t exist or it’s all in your head, time to find a practitioner that truly understands Lyme disease in all its many forms and get the help you need. But the silver lining here is that the dedicated group of practitioners who support the treatment of chronic Lyme, continues to research, gain knowledge, and fight for the Lyme community to help you too, overcome Lyme disease.