(Originally posted 4/4/22)
JV’s Journey with “Lyme” : Part 2
- Thank You
- My Journey
- What is Lyme?
- Symptoms of Lyme
- Diagnosing Lyme
- Treatment for Lyme
- Doctors Who Treat Lyme
- Links to Articles and Books About Lyme
- Links to Mental Health Resources
- A Final Word
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The information below was gathered by JV during his journey. It is not meant to be a guide for your physical and mental health. Always consult a physician that you trust and a mental health professional that you feel comfortable with.
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WHAT IS LYME?
Lyme is a bacterial infection that is transmitted to humans via a tick bite. The primary pathogen causing the illness and making people sick is a corkscrew-shaped bacterium called Borrelia burgdorferi. So why do we call it “Lyme”? The first case of humans becoming ill with this bacterium was in 1975, in a place called Lyme, Connecticut. Today, there are reported cases in all 50 states. It is one of the fastest-growing infectious diseases in the U.S., and California has recently become a hotspot. A report by Quest shares that recent cases in California have shot up by 195%.
Lyme is actually one of many Tick-Borne Illnesses (TBI’s). According to a scientific report published on nature.com, TBI’s have become a global health challenge, and will affect over 35% of the global population by the year 2050. You might be interested in this PBS article published Feb 2022 titled “Why Lyme and other tick-borne diseases are on the rise”.
Most people who have an active Tick-Borne Illness or multiple active TBI’s simply tell others that they have Lyme. It just makes things easier. That happens to be my case. I just tell people that I have Lyme, however, when I tested positive for TBRF Borrelia, I also tested positive for Babesia and Bartonella. Each one of these can cause a multitude of awful symptoms.
SYMPTOMS OF LYME
According to healthline.com, you are at an increased risk of Lyme disease if you live in Northeastern states, Central states and parts of the West Coast (“primarily northern California”). There are two stages of Lyme: acute and chronic.
Acute - 3-30 Days After Bite
- Fever
- Chills
- Headache
- Fatigue
- Muscle and joint aches
- Swollen lymph nodes
- Sometimes a bulls-eye rash
Chronic - Months to Years After Bite
- Severe headaches and neck stiffness
- Episodes of dizziness or shortness of breath
- Inflammation of the brain and spinal cord
- Brain and nervous system damage
- Decreased short-term memory
- Difficulty concentrating
- Ringing in the ear (tinnitus)
- Chronic fatigue
- Nerve pain
- Heart palpitations or irregular heartbeat (Lyme carditis)
- Shooting pains, numbness, or tingling in the hands or feet
- Additional rashes on other areas of the body
- Insomnia
- Facial palsy (loss of muscle tone or droop on one or both sides of the face)
- Arthritis with severe joint pain and swelling, particularly the knees and other large joints
- Intermittent pain in tendons, muscles, joints, and bones
- Pain throughout the body
- Eye pain
- deterioration of vision, blurry vision, eye floaters
The Mayo Clinic websites advises: “Visit your doctor even if signs and symptoms disappear — the absence of symptoms doesn't mean the disease is gone. Untreated, Lyme disease can spread to other parts of your body for several months to years.”
SYMPTOMS OF OTHER TBI’S
The symptoms of Babesia and Bartonella can overlap with Lyme symptoms – and in many cases, be much worse than Lyme. Dr. Bransfield says, “When we look at psychiatric symptoms, we often see Babesia and Bartonella. When infections impact the brain, they can cause cognitive impairment or behavioral and psychiatric changes.”
I just did a Google search on symptoms of other TBI’s like Babesia and Bartonella. Here is a document posted by Dr Julie A. Griffith. She is a Harvard and Oxford trained M.D. in the Bay Area. (NOTE: I am not affiliated with Dr. Griffith, nor have I ever been to see her.) Document of symptoms
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The following blog post is not meant to be guide for your physical or mental health. JV has documented a portion of his journey with Lyme. He has also decided to share articles and viewpoints that he discovered along the way. If you have questions about the material below, it is best to consult your physician.
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DIAGNOSING LYME - IT CAN BE VERY DIFFICULT
Most doctors follow the CDC’s two-tier approach to testing. However, according to many doctors, scientists and universities, the testing is inadequate. In an NBC article, Dr. Stephen Phillips writes that “The blood tests used to diagnose Lyme are four decades old and unacceptably inaccurate: A review of eight studies that evaluated the effectiveness of these tests revealed that they miss more cases than they diagnose. The result is that many people go undiagnosed for years leading to a life that can be devastatingly altered or worse.”
Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., published results from the Journal of Clinical Microbiology study which found that the CDC failed to accurately diagnose 71% of blood samples from individuals presenting a Lyme rash. "For an epidemic like Lyme disease that is growing at such an alarming rate, there needs to be more research, greater understanding, better diagnostics, and improved treatments," said Charles Chiu, MD, PhD, Professor of Laboratory Medicine and Medicine, Division of Infectious Diseases, University of California, San Francisco.
These doctors are not alone in calling for better testing. There are several doctors across the country who were once thriving in their careers, only to lose everything after battling tick-borne infections. When these doctors went to their peers to find a diagnosis and treatment, they didn’t get many answers. Of course, the more time passes, the more the disease progresses. Their stories are pretty heart-wrenching. The good that came from it was that a lot of these doctors in the U.S. have now fully dedicated themselves to helping other patients find out if they have a TBI, and then helping to treat them as best they can. This has helped spur something across the globe called “functional medicine”. In functional medicine, they not only rely on a patients’ symptoms, they also order tests from several different labs to obtain a diagnosis.
There are some labs that offer at-home testing. However, I recommend that you work with a doctor. If you feel strongly that you might have Lyme or another TBI based on the above symptoms, then find a doctor who is willing to hear you and work with you to explore possibilities if you have symptoms that align with a TBI. It might be the case that you don’t. That is one thing you can mark off of your list. Some people who test positive decide to get multiple tests from multiple labs to confirm a diagnosis. This can help obtain a proper diagnosis; it can also end up being very costly, as it’s often not covered by insurance.
Healthline.com posted “The 5 Best At-Home Lyme Disease Tests for 2022”
Project Lyme (a great source for Lyme info) recommends using (CLIA) certified laboratories:
IGeneX
- IGeneX’s newer ImmunoBlot or traditional IgM/IgG Western Blots are regarded as more sensitive Lyme disease tests because they test for more strains and report additional bands than a standard Western blot. Insurance or Medicare may provide reimbursement. The Lyme Test Access Program (Lyme-TAP) may also provide financial assistance to patients who demonstrate a financial need.
Stony Brook University Medical Center
- Administered in conjunction with the Clinical Immunology Laboratory in the Department of Pathology at the Renaissance School of Medicine at Stony Brook University, the IgM and IgG Western Blot Lyme disease test is often covered by insurance. This is considered a more sensitive test, if the ordering healthcare provider checks the box to include CDC non-specific bands on the Western Blot report.
Medical Diagnostics Laboratory (MDL)
- MDL is often covered by insurance. In addition to Borrelia burgdorferi, the lab offers testing for multiple divergent Borrelia strains, including European strains Borrelia afzelli and Borrelia garinii and the Southern U.S. strain Borrelia lonestari.
Labcorp and Quest
- Both Labcorp and Quest Diagnostics provide IgM and IgG Western Blot testing for Lyme disease. The tests are usually covered by insurance, but testing doesn’t take into account divergent Borrelia strains. Both laboratories report a limited number of Western Blot bands, which may lead to decreased sensitivity and more false-negative results.
Vibrant America
- This laboratory is continuing to grow in its use by Lyme specialists. While tests from Vibrant America are only available with a doctor’s order, they offer extensive and accurate reporting.
TREATMENT FOR LYME (and other tick-borne infections)
Again, if Lyme is caught early or symptoms occur early, it can usually be treated fairly easily with antibiotics. However, many of us pick up these microbes throughout our lives and they spread throughout our bodies. According to Scientific American, “Humans Carry More Bacterial Cells than Human Ones”. A lot of the bacteria and fungi we have in our bodies help us – but there are some bacteria which have the potential to cause disease. As long as our bodies are in balance and our immune systems are strong, they can work with the good bacteria to keep the “invaders” in check. However, if we become out of balance and our immune system is compromised in some way, they can wreak havoc. Here is an article from CBS news titled “When Lyme disease isn’t caught early the fallout can be scary. Article Here
In my case, I recall being bitten by several ticks as a kid. My parents and I just dug them out and moved on. We also had several stray cats that we adopted. Cats can carry Bartonella (aka cat scratch fever) and transmit the disease through fleas, ticks, or even a scratch. This article from NC State University talks about how Bartonella can penetrate almost any cell in the body, linger and lead to chronic disease. Article Here
When I was in my early 30s, I moved to Dublin, California, where my backyard was essentially home to deer and wildcats. I can remember that at that time, I developed stretch marks on my butt and lower back. Listeners may recall that we have joked many times that I used to have stretch marks. I had no idea at the time, though, that stretch marks are a big sign of a Bartonella infection. All of these microbes entered my body. And my body kept them in check. I will explain what happened to make these infections become active in my “FINAL WORD” section. Yes, childhood tick infections can become active later in your life! To better understand, think of chicken pox. The varicella-zoster virus causes chickenpox. After you've had chickenpox, the virus lies inactive in nerve tissue near your spinal cord and brain. Years later, the virus may reactivate as shingles.
When a person carries microbes given to them by ticks, fleas, lice or mosquitos, they can remain asymptomatic for many years, The microbes can travel to the heart, brain and nervous system, as well as other organs in the body. An “event” can then trigger them to become active months to years later. Events known to trigger an active infection are car accidents, traumatic injuries, a death in the family, loss of job or any major stress physically or emotionally. Just think of anything that might cause a major imbalance with your immune system.
When this happens, most doctors in Western medicine will choose antibiotics to go after the infection. However, in the later stages of tick-borne infections, this can prove problematic for two reasons – for one, treatment to kill off bacteria that has spread throughout the body would require high amounts of antibiotics for long periods of time. In that time, the antibiotics are not only killing off the disease-causing bacteria, they are also killing off all the good bacteria that we need! The second problem with antibiotics is that these microbes are a lot smarter than we think. These microbes were here on Earth long before humans were, and they are actually very intelligent. The corkscrew-shaped Borrelia bacteria that causes Lyme is able to perceive threats. When it does, it will dig deeper into tissue. It also has the ability to change form and it has a biofilm around itself that antibiotics often cannot penetrate. This is another reason why many people who have Lyme have relapse, again and again. The bacteria goes into hiding, or “protection mode”, during antibiotic treatment, and then comes back out once treatment ceases. It is also possible for microbes to build a resistance to antibiotics over time.
A Harvard Health Article says that “The evidence for a benefit from antibiotics is weak” when it comes to treating late-stage Lyme. I want to point out, though, that many people have benefited from antibiotics. My infection was active for almost a year before I received a diagnosis, and antibiotics truly gave me some relief my lowering the load of microbes. However, I’ve since learned the risk of long-term use, and hope not to be on them long-term. I’m glad that many major organizations are realizing that we need more research done to give patients better testing and treatment.
There is a great article on the Columbia University website that says: “There is limited expertise in treating the acute and chronic aspects of tick-borne diseases, making it difficult for patients to find high-quality, specialized care. In addition, little research has been done to determine which treatments are most effective for persistent symptoms” Article Here
I believe western medicine will have to look beyond antibiotics as many microbes develop a resistance. John Hopkins has recently dedicated itself to finding botanical herbs that show more promise than antibiotics in the treatment of Lyme. Article Here So far, the herbs seem to be effective in showing antimicrobial activity, in a test tube. However, this approach has not been tested in humans.
The reason why herbs are often a good choice is that they are natural. Plants have many natural anti-microbial, protective and supportive properties. In fact, Chinese medicine has been treating what they once called “Gu Syndrome” for thousands of years. Gu Syndrome used to mean that a person was possessed by demons. However, they did not mean “spiritually” – they meant bugs inside the body that we cannot see. They actually came up with formulas that worked! Many Western doctors are now trying to incorporate Eastern medicine into their treatment plans.
I’m not a doctor, and I’m not an expert. I’m just another patient who has to determine what treatment I feel is best for me. Some people believe in antibiotics. Some believe in herbs. Others believe in both. There are a lot of conventional doctors who will insist on using only antibiotics. This has brought about a rise in naturopathic doctors, integrative doctors, functional medicine doctors and “Lyme Literate” doctors. These are the doctors who will consider and suggest a variety of approaches. I think it’s important to also do your research! Some of these doctors offer therapies or treatments that are controversial. And although many patients swear by theses therapies, many skeptics point out that many of them are not proven in human clinical trials to be safe or effective in treating Lyme. When people have been sick for years and are desperate, they are willing to sell their home in order to try anything to get back their health. This illustrates the dire need for ALL of the medical community to work together, researching the best testing and treatment possible. Instead, many patients, doctors and advocates for better testing and treatment are caught in something that has been coined “The Lyme Wars”.
There is a great article on the Harvard Medical website that talks about the “Lyme Wars”. Make sure you read one of the comments below the article by a woman named Julie from California.
Here is an article in Forbes titled “Tipping Point: The Resistance Is Gaining In The Lyme Wars.”
DOCTORS
I’m thankful for every doctor that tried to help me during my journey. Sometimes we as patients blame our doctors for not finding the problem and “fixing” us. I feel like most of them are doing their best. I think they want to help. We should remember that. On the flip side, if there are any doctors reading this, I hope you will always keep an open mind. I also hope that you will include compassion with your patients that have complicated illnesses. You are not just doctors that write prescriptions, you are healers.
Conventional Medical Doctor
Everyone should have a medical provider, as they can treat acute issues and rule out many conditions. They can also refer you to other specialists if they are concerned about something that they feel is life-threatening or requires a closer look.
Doctor of Osteopathy
Doctors of Osteopathy have a similar skillset to Medical Doctors. Some DOs are more likely to explore natural approaches to healing.
Integrative Medical Doctor
They are more likely to order extra labs to see what abnormalities you might have going on in the body. They might recommend a combination of prescription drugs, supplements and procedures such as IV nutrient therapy, IV Chelation, and a few other procedures that some patients swear by. Many patients strongly believe in other procedures like Ozone Therapy and Hyperberic Oxygen, while others are skeptical due to the lack of research related to Lyme disease. Integrative doctors can be a good option if you have gotten into a tailspin with some really bad symptoms.
Functional Medical Doctor
These doctors are more likely to take a holistic approach to treatment, looking for underlying causes of illness which might be reversed with diet, lifestyle changes and supplements.
Naturopathic Doctor
They are similar to Functional or Integrative Doctors, except they are more likely to use natural herbal therapy.
Lyme-Literate Medical Doctor
These doctors specialize in the treatment of Lyme. They are more aware of the complexities of TBI’s. Although many are starting to lean towards integrative and natural approaches to treating Lyme, many are strong advocates for long-term IV antibiotics. If you are against long-term antibiotics, you might want to find a Lyme-Literate Medical Doctor who combines or fully uses natural approaches.
LINKS TO DOCTORS WHO TREAT LYME
International Lyme And Associated Diseases Society (ILADS) – Doctor Search
BOOKS ABOUT LYME
- “Healing Lyme” by Stephen Harrod Buhner - This guy is a genius that breaks down Lyme as a microbe like no one else ever has. He is also an expert in herbal treatment.
- “Unlocking Lyme” by William Rawls, MD - This doctor covers every angle of Lyme, including treating it. He also believes in the herbs.
LINKS TO ARTICLES ABOUT LYME
LINKS TO VIDEOS ABOUT LYME
- Two Other Lyme Doctors discuss treatment - some treatments are controversial
Note: Some of these organizations may require you to submit a form or create a login to access their databases.
RESOURCES
A FINAL WORD
I did not make this page to incite panic. I made it to be of some help for people who have been struggling with symptoms similar to mine, and who have not been able to get a diagnosis. It might, in fact, be an active tick-borne infection. TBI’s can often mimic MS, Lupus, Parkinson’s, Alzheimer’s and other autoimmune diseases. Many doctors also believe that TBI’s can lead to these autoimmune disorders.
I especially want you to watch your kids. Always check them after being outdoors – and especially watch for strange symptoms. As Dr. Shannon Delaney of Columbia University said: "Many patients with chronic symptoms related to tick-borne illness are misdiagnosed with conditions such as depression, chronic fatigue syndrome, or even psychosomatic disorder.” She goes on to say that: “Children infected with a tick-borne illness may have dramatic and disabling neurologic or psychiatric symptoms that seem to occur overnight."
I have read a few different reports about children having learning disabilities and/or picking up sudden psychiatric disorders.
In this article titled, “Neuropsychiatric Presentations of Lyme disease” it says, “Neuropsychiatric symptoms may be the first symptom recognized or can surface months or years later. One study found Lyme encephalopathy in children presented with “memory impairment, irritability and somnolence” months to years after the initial classical presentation of Lyme disease.”
Here’s another article from a child psychiatrist titled, “Tick-borne Disorders and Mental Illness in Youth: An Underrecognized Connection.”
At the bottom of this page are a few more articles about what Bartonella and Babesia do to the brain.
Please do your best to take care of yourself. I wonder sometimes if these multiple infections were able to get the upper hand on my immune system because of my lifestyle. I was eating unhealthy food every day. I was drinking soda every day. My sleep was horrible. My stress levels were high. Aside from trying to be an overachiever, taking on multiple projects, I also got emotionally involved in politics, reality TV, COVID-19, endless hours of TV coverage of protests, and drama on social media. All it took was for one final event in March 2021 for the boiling point to be reached, and for the disease-causing microbes in my body to take over. I don’t feel comfortable sharing what that event was at this moment. I hope you understand.
Maybe part of the lesson is, is to try and treat the body that you have well.
Please take care of yourself.
If you are feeling overly stressed, anxious, depressed or having thoughts of suicide, I promise you are not alone.
Please reach out to someone.
- National Suicide Prevention Lifeline 800-273-825
FOR NOW, I won’t be able to talk too much with people about my current illness or treatment, because I find that doing so heightens my symptoms. I have a long road ahead of me to try and restore myself to health. But I wanted to cover as much here as I could. I hope some of this helps. I love you!
READ DETAILS OF MY JOURNEY HERE: Go to Part 1
More on my infection: Babesia
Article that explains how Babesia affects the brain
Other symptoms of Babesia
Babesia-Treatment resistant Depression
More on my infection: Bartonella
If you missed the show live on 4/4, JV explains in his words what happened the last 6 months. You can listen to the segment below.