My story of how I was diagnosed and treated for Chronic Lyme Disease.
I recently read an article criticizing patients who claimed they have “chronic” Lyme disease. Obviously Lyme disease exists, it is caused by the bacterial infection borrelia burgdorferi. But what makes the disease “chronic” and is chronic Lyme disease real?
Typically, a person is diagnosed with Lyme disease through a blood test and is given 30 days of antibiotics. Then that’s it. No more Lyme disease! …Right? Well, yes, typically this is true. Antibiotics are known to be very effective when treating early-stage Lyme disease.
However, up to 63% of Lyme disease patients continue to report debilitating symptoms after treatment. So do these patients have “chronic” Lyme disease? According to popular science, no. Lyme disease symptoms after treatment is technically called “Post-Treatment Lyme Disease.” PTLD is considered an autoimmune response, and symptoms are not attributed to an active bacterial infection. This is because after 30 days of antibiotics, you are supposedly completely “cured” of Lyme.
But there is no way to verify this! There is no traditional test that can determine if the Lyme infection is completely gone in a patient. The typical Lyme disease blood test, the Western Blot test, does not detect active infections. It only detects antibodies, which means if you have ever had a Lyme infection, it is possible to always have the antibodies show up on the test. There is no current “official” way to tell if the Lyme infection is active for patients.
How can critics say “Chronic” Lyme Disease infection does not exist when there is literally no official way to determine if it does?
Not to mention that there is no treatment for PTLD. Most patients are just told symptoms will probably go away after a few months, and they will just have to suffer through it. Yet many continue to experience symptoms for YEARS, with no end in sight. Most patients have no choice but to look for alternative treatments if they ever want to stop suffering. They join the group of around 40% of Americans who choose to seek alternative treatments because traditional treatments failed to help them. This is not to criticize the many helpful advances that traditional medicine has given to the world. But we must face the fact that the American population, along with the global population, is only getting sicker. While a major part of this is due to a lack of access to healthcare, some of it is attributed to a lack of effective treatments. Just ask anyone with a chronic illness.
One reason traditional antibiotic treatment may not help the Lyme disease patient is because Lyme disease is often accompanied by co-infections. These co-infections can include: Babesiosis, Bartonella, Ehrlichia, Mycoplasma, Rocky Mountain Spotted Fever, Anaplasma, and others. Because some of these infections are viral or parasitical, as opposed to bacterial, many traditional antibiotics will not kill them off. Co-infections are not typically tested for when someone is diagnosed with Lyme. These co-infections could explain continued symptoms after antibiotic treatment. Labeling someone with “Post-Treatment Lyme Disease” is dangerous if the real culprit of symptoms is being caused by a co-infection. Patients will not receive proper treatment with a misdiagnosis.
So, let’s look at the term, “chronic.” According to the U.S. National Center for Health Statistics, the term “chronic” when relating to disease means “lasting three months or longer.” (Other sources claim “chronic” means lasting more than 1 year). So, if anyone has had an active Lyme infection lasting more than 3 months that caused debilitating symptoms, then according to this definition, Chronic Lyme Disease exists. Do you think anyone has ever had a symptomatic and active infection of the Lyme disease bacteria in their body that lasted longer than three months? Chronic Lyme critics, for some reason, think this is absolutely impossible.
What about the people who had undiagnosed Lyme disease for years? I was sick for 6 years before I got my Lyme diagnosis. Many critics of Chronic Lyme claim that only unqualified “doctors” diagnose people with “Chronic” Lyme, without real evidence. This is not true. I was not diagnosed by some mystical “doctor” based on emotions and astrology. I was diagnosed by testing positive on the Western Blot test given to me by my run-of-the-mill, traditional, primary care doctor, and confirmed by two infectious disease specialists (for more info on my Lyme story, click here).
Since I was experiencing debilitating symptoms for 6 years before I got a proper diagnosis, doesn’t that mean I had a chronic active Lyme infection for all those years? While there is no adequate way to verify my case, I am not the only one who has experienced this. There are over 300,000 new cases of Lyme disease each year in the U.S., being called the fastest-growing epidemic of recent times. Many patients wait years for the diagnosis and report symptoms after antibiotic treatment. Clearly, antibiotic treatment is not effective for these late-stage Lyme disease patients. But that does not necessarily mean the infection in inactive, it could mean that the long-living bacteria has become antibiotic-resistant. The Lyme bacteria is in the shape of a spirochete, giving it the ability to easily hide from antibiotics. (Here is an article explaining how bacteria can change shape to resist antibiotics).
Lyme disease is called “The Great Imitator” because it can “mimic” a variety of diseases, such as multiple sclerosis, arthritis, chronic fatigue syndrome, and lupus. I had POTS (Postural Orthostatic Tachycardia Syndrome a.k.a. Dysautonomia) and the only reason I asked for a Lyme test was because I met many other POTS patients who had a Lyme diagnosis. After my Lyme test came back positive, my doctor now tests all her POTS patients for Lyme. Lyme has also been associated with ALS, fibromyalgia, Parkinson’s, MCAD, Ehlers-Danlos Syndrome, and other chronic illnesses. I would not be surprised if, in the future, it is discovered that many cases of these chronic illnesses have a root cause of Lyme disease. Usually healthy bodies do not just malfunction for no reason. An ongoing bacterial infection could give a cause to unexplained symptoms.
Chronic Lyme Disease is not alone in disease-deniers. In the early history of the AIDS epidemic, there were people (including “expert” scientists) who wrongly denied the existence of AIDS. AIDS patients were also shamed for seeking alternative treatments when traditional medicine offered no help. They had to advocate for themselves to disprove all the misinformation and receive acknowledgement from the general population.
Nonetheless, if you are going to criticize the validity of “Chronic” Lyme Disease, then do not ridicule the suffering patients! Whether they have Chronic Lyme Disease or not, they are still suffering horribly. Whether you call it “Chronic Lyme Disease” or “Post-Treatment Lyme Disease,” it is the same story. While it is possible to die from complications due to Lyme Disease, the number one cause of death of Lyme Disease patients is suicide (1,200 per year). Telling these patients that they do not have the condition (even though you have no way to verify it) DOES NOT HELP THEM! Criticizing the sick, suffering, and suicidal people will not help them recover, it will only make things worse. If you are going to criticize, then criticize the health care system that failed them. These people are suffering medically, and they are not receiving help from the traditional health care system.
But there is hope! More Lyme advocacy groups are changing laws surrounding Lyme so that chronic patients can receive better care, such as Illinois’ law expanding insurance coverage for Lyme disease treatment.
For more information on Chronic Lyme Disease, check out the International Lyme and Associated Diseases Society, which recognizes persistent Lyme infections that cause chronic symptoms. They also discuss many other controversies surrounding Lyme disease, such as ineffective testing methods.
Have you been diagnosed with Lyme and have experienced symptoms for more than 3 months? Please share your story in the comments! The more we speak out about our experiences, the greater awareness there will be, which will hopefully, eventually, force the health care system to do something about it!
Probiotics are essential for gut health and mental health! The gut “brain” creates certain neurotransmitters, such as dopamine and serotonin, which are important to maintain proper mental health.
Watch this video for my review of BalanceGenics probiotics and let me know in the comments how probiotics helps you!
“Hi! I’m Kiki, I have been living with and recovering from a #chronicillness for the past 10 years. With God as my healer, I am looking forward to a healthy life and to bring hope to others.”
This was what I wrote on my first instagram post nearly three years ago.
I remember waking up one day and a random thought, a direction of inspiration, repeated in my mind: “I am going to be instagram famous now.”
So I started my instagram account, @chronicallyhealed!
The previous ten years was full of illness, anxiety, isolation, fear, and exhaustion. But through the setbacks, and God’s prophetic word over me, I gradually regained my health and confidence.
I had been feeling better for the past three months. During this time, I was regaining all the weight I had lost due to the illness. Once I was back to a healthy weight, I realized something: I am feeling better! I am no longer experiencing symptoms!
However, I was not quite sure what to do then. For the better of a decade, my life was laying on the recliner and going to doctors. What am I supposed to do with my life now? I had reached my goal, my dream: to be healed.
During my illness, I was socially isolated and rarely left the house. This left a depression hovering over my mind. If I did not keep myself distracted from my zombie life, the depression would swoop down and try to drown me with lies: “You’re not good enough.” “You’re a loser.” “You will never amount to anything.”
One of my favorite distractions was movies. Specifically, Disney movies. The colorful cinematography, inspiring quotes, happy endings, and lovable characters helped keep my mind away from the temptation of feeling bad for myself. The characters became my friends, and I could go on adventures with them even in my disabled state.
I specifically related to the character Rapunzel in Disney’s Tangled. She was locked away, isolated in her tower. She filled her day with small distractions and wondered, “When will my life begin?” I dreamed with Rapunzel, wondering when it would be my day to leave my isolation.
Long story short, Rapunzel leaves her tower, goes on an adventure, and lives her dream of seeing the floating lanterns. “What do I do [now]?” She asks Flynn Rider. “Well,that’s the good part I guess. You get to go find a new dream,” he replies.
So here I am: I left my tower of isolation and fulfilled my dream of being healed of a chronic illness. What do I do now? I get to go find a new dream!
I decided I wanted to go into modeling. I had done some modeling in the past and enjoyed it. With my new life of health, I stepped into my new dream. I went on numerous modeling auditions for agencies and sent pictures to others, with the help of some photographer friends.
….And nothing happened. No callbacks and no contracts.
Having an instagram as a portfolio can help models get discovered. I thought about it and wondered if it was worth the effort. I mean, would anyone really follow me? I didn’t feel comfortable posing in bikinis and lingerie, like many instagram models did. I didn’t travel the world or own fancy cars that would get a lot of likes. Also, the “fame” didn’t appeal to my shy character. The doubt wrestled with me as I prayed about it. What did I have to offer to people, anyway?
But then I woke up one day, and all the doubt was gone. “I am going to be instagram famous now.” The thought confidently repeated in my mind. A feeling of hope swelled in me, a feeling I had only felt once before: when I was called to be healed.
I felt like this was my new calling in life! I was not just going to be an instagram model, I was going to be a model of hope for everyone dealing with chronic illnesses!
I was not quite sure myself if I was completely healed yet. I was definitely feeling better, but what if I hit another setback? Nonetheless, I named my instagram, “Chronically Healed.” I knew God’s plan of complete healing was for me and I identified with that healing.
A part of me was surprised when my instagram took off, quickly hitting 1,000 followers, then 2,000, then 3,000. People really want to follow me, a girl who was sick and isolated the past 10 years? But another part of me was not surprised. It felt like this was always meant to happen.
I believe that my suffering was for a reason. I believe that my healing was for a reason. To help others! God blesses us, not just so we can be blessed, but so that we can go out and bless others. God allowed me to suffer so I can better help those going through the same thing. Through living with a chronic illness disability and going through the healing process, God taught me wisdom. I feel utterly compelled to share this wisdom and insight every day.
My heart aches for the millions suffering from chronic illnesses. God gave me a new life, and with this new life, I had a new mission: To raise awareness, advocacy, and hope for people with chronic illnesses.
People from all over the world were messaging me, telling me that I had given them hope. These messages are worth more than gold to me. I suffered for ten years of illness and anxiety. But now God was using that to reach out to others. Just helping one person makes it all worth it.
Also, when God heals, he doesn’t only restore us to our original position. When God heals, he raises us to be more than we were before!
Yesterday, @chronicallyhealed reached 10,000 followers. I would have never imagined this! For so long, I felt alone, insecure, and forgotten. If you told me 10 years ago that I would be healthy, thriving, and a model with 10k instagram followers, I would not have believed it!
There is hope!
And this is just the beginning! God has so much more in store!
Thank you for following me, each and every one of you. Your support is greatly appreciated! You are the reason I keep reaching for my dream.
Click Here –> https://www.skillshare.com/classes/Practical-Christianity-Victory-in-Christ/725342478 to enroll in this free course!
❤ R ▫ E ▫ S ▫ T ▫ O ▫ R ▫ E ▫ D ❤
What does restoration mean for you?
🌍 “In the beginning, God created the heavens and the earth.” “God saw all that he had made, and it was very good.” (Genesis 1:1, 1:31) ❤
God is good, and he created the earth and everything in it to be good. The earth was full of God’s light, life, and love. Humans enjoyed dwelling with God and experienced his joy and peace in the fullest. They lived life in abundance!
God created humans to love and be loved. To love God and be loved by God. To love others and be loved by others. Love is the reason God created the earth. God created you simply because he loves you so much!
For love to exist, there must be free will. Love is not true love if it is forced love. Love can only be freely given. So to give humans the ability to love, God gave them free will. ❤
➡ But by giving a limited creature free will, it will inevitably lead to that creature choosing sin. Adam and Eve, in their own free will, chose to sin. Humans have been choosing to sin in their free will and weakness ever since. Humanity and the earth fell into darkness, destruction, and death.
The Fallen world is all that we have ever known. We have only known an earth of evil, disaster, illness, hardship, and eventually, death. God knew that giving such a limited creature free will would inevitably lead to this Fallen world. Was this God’s plan all along? Isn’t God good, and didn’t he create us out of love?
God IS good and God DOES love us and God DOES have a good plan for us: Jesus!
❤”God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world, but to save the world through him.” (John 3:16-17)❤
➡ Jesus is the perfect sacrifice who saves us from the darkness, destruction, and death!
➡ Jesus is God’s plan to redeem humanity and restore the earth to be good once again!
“It is finished” Jesus said when he died on the cross for you (John 19:30). He took your place to receive punishment for your sin so that you would not have to. By his blood, you are made righteous in God’s eyes! Jesus won the victory over sin, death, separation, and darkness for you! All the darkness and death that tries to destroy you has already been conquered by Jesus on the cross! 😄
The realization of Jesus’s victory will be made complete in his second coming. There will be a “new heaven and new earth” where God will dwell with his people. “There will be no more death or mourning or crying or pain, for the old order of things has passed away” (Revelation 21:1-4). Humanity and the earth will be fully restored to God’s original, perfect, and GOOD creation! ❤
➡ Until then, we can enjoy the “first fruits” of Jesus’s salvation and restoration! Jesus says, “I came that they may have life and have it abundantly.” (John 10:10)
Out of our salvation and redemption, our relationship with God is restored. We can grow closer to God and know his healing, peace, joy, and life in the fullest! ❤
So how can Christians know God more and enjoy the first fruits of Jesus’s restoration?
CLICK HERE for a free course to learn more about the practical mindsets, tools, beliefs, and faith to grow closer to God and Jesus’s restoration of abundant life!
Going to church helped motivate me to KEEP MOVING FORWARD! It gave me a reason to push myself and face my fears of social anxiety. Chronic illnesses can cause social isolation, so going to a small group gave me something to look forward to each week. Going out was hard on my body, and I’d be in bed the entire next day, but it was so wroth it to actually feel normal for once!
What little tips do you have for going to a church with a chronic illness? Share in the comments below!
Click here to listen to sophantastic.org’s podcast interview with me! I talk about my journey with Lyme disease, my symptoms, treatments, and healing. Let me know what you think in the comments!