💚 Lyme Awareness Day 30: Is Chronic Lyme Disease Real? 💚

Adapted from my blogpost: Does Chronic Lyme Disease Exist?

It’s Lyme Awareness day 30, and this is my longest video post yet and it is about one of the most important facts about lyme disease. I have so much to say about this!

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, 40% – 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 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 positive on the test. The antibodies may show up as active or inactive, but considering that tests miss up to 50% of cases, these tests are not very accurate. 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 test 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 an improper diagnosis.

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 and ridiculously 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 CDC-positive on the Western Blot test given to me by my run-of-the-mill, traditional, primary care pediatrician, and confirmed by two infectious disease specialists.

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. The CDC claims over 300,000 new cases of Lyme disease each year in the U.S., and some top Lyme organizations estimating up to 2 million new cases per year in the U.S, being called one of the fastest-growing pandemic 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 is inactive, it could mean that the long-living bacteria have 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, reaching up to 1,200 deaths 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!

And thank you for watching this video all the way through! I encourage you to SHARE this video on your twitter, facebook, and everywhere. It is so important that Chronic Lyme Disease is considered a valid disease so that more research can be done to find treatments for the MILLIONS of people suffering from this.

Tomorrow is the last day of Lyme Disease Awareness Month, and I am sharing the MOST IMPORTANT fact yet, so don’t miss it!

References:

https://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0116767

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3060013/

https://nationalhealthcouncil.org/wp-content/uploads/2019/12/AboutChronicDisease.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5036304/

https://theconversation.com/antibiotic-resistance-researchers-have-directly-proven-that-bacteria-can-change-shape-inside-humans-to-avoid-antibiotics-124296

https://globallymealliance.org/about-lyme/diagnosis/symptoms/

https://books.google.com/books?id=_mtDBCDwxugC&pg=PA26#v=onepage&q&f=false

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5481283/

https://lymediseaseassociation.org/government/federal-government/federal-legislation-federal-government/illinois-governor-signs-law-expanding-insurance-coverage-for-lyme-disease/

https://www.ilads.org/research-literature/controversies-challenges/#targetText=Chronic%20Lyme%20disease%2C%20which%20ILADS,poorly%20understood%20and%20often%20mischaracterized.&targetText=However%2C%20for%20many%20other%20individuals,Fatigue

https://www.cdc.gov/lyme/datasurveillance/index.html?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Flyme%2Fstats%2Findex.html

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5872223/

💚 Lyme Awareness Day 16: Mental and Emotional Health 💚

This is one of the most important Lyme facts I am sharing with you, so listen up!

➡ Anxiety, depression, and emotional sensitivity can be SYMPTOMS of Lyme disease. Lyme can cause anxiety and depression as symptoms.

➡ Many Lyme patients are falsely diagnosed with mental health disorders, preventing them from receiving proper treatment.

I had TERRIBLE anxiety! It felt like my brain was constantly and frantically trying to claw itself out of my skull. It felt like there were loud, overlapping commercials SCREAMING in my mind constantly. No wonder I had insomnia! It was so strange how my mind was always freaking out, because I lived a pretty calm life.

I can’t imagine what this anxiety would be like if I had been a child. You would have absolutely no way to describe it, let alone manage it. Many children with Lyme disease have behavioral issues, and I completely understand why if they are experiencing the anxiety like I did. I would definitely act out if I had anxiety like that and had not developed the cognitive skills yet to communicate about what it was I was feeling.

➡ I tried everything for my anxiety. No pills helped. Therapy helped me cope, but didn’t really help the symptoms. Nothing helped until I was able to effectively treat the Lyme. Once the Lyme was gone, my anxiety vanished.

➡ I also used to think I was immature for crying over little things. I would be super happy one day, and the next, crying my eyes out. “Why am I even crying?” “I DON’T KNOW!” But once the Lyme was gone, so was my emotional sensitivity.

It could be detrimental to treat your anxiety or depression as a mental issue, WHEN it is being caused by a physical issue. It is never your fault if you have anxiety or depression, whether it is caused by a physical or mental issue.

❤ Living with a debilitating and isolating illness can also lead to anxiety and depression, which I will talk about more in a later video❤

💚 LYME PATIENTS: What are your mental and emotional symptoms? 💚

💚 Lyme Awareness Day 8: Treatments 💚

If caught early, Lyme disease is usually treatable with antibiotics. However, many cases of Lyme remain undiagnosed for years 💚

There is no official treatment for Chronic Lyme Disease.

Chronic Lyme patients have no other choice but to pay out of pocket for expensive alternative treatments that do not always work. Some treatments work for some, and not for others.

I can only tell you what helped me, but this is specific to my Lyme symptoms. For more info on my Lyme journey and treatments, check out my Chronically Healed Video!

The treatments that helped me the most were:

IV Therapy with saline, vitamin c, vitamin b complex, magnesium, calcium, and glutathione, The Paleo Diet, Biofeedback therapy, NUCCA Chiropractic, Various supplements, THC Medical Marijuana.

Conventional medicine failed me. I struggled for years until I finally found a naturopathic doctor who understood my condition and actually helped me get better.

If conventional medicine is not helping you and you are getting sicker and sicker, it is okay to seek out alternative treatment. There is no shame in going to a naturopathic doctor, especially when you are receiving no help from traditional doctors.

But please remember to use good judgment. There are many people out there preying on desperate lyme patients. I’ll talk more about how to avoid scams in a later post.

If you have Lyme disease and have found an effective treatment, please share in the comments! There are so many suffering from this disease with no direction, your information could really help someone!

💚 Lyme Awareness Day 2: “What is Lyme Disease?” 💚

After living with Lyme for 10 years, I get this question all the time. But I don’t know how to answer it! 😳

Lyme is a complicated disease that affects everyone differently. There is still so much unknowns and uncertainties about Lyme because RESEARCH IS LACKING 💚

So, I can’t give you a simple answer to this question, but I’ll try my best!

Lyme disease is caused by a bacterial infection called borrelia burgdorferi.

It’s traditionally known to be transmitted by certain types of ticks (tiny little bugs that bite you and drink your blood).

Lyme can cause a multitude and variety of symptoms, which I will go over in a future video.

Typically, if caught early, Lyme can be successfully treated with antibiotics. However, for Lyme disease that was undiagnosed for years, treatment is more difficult. This results in Chronic Lyme Disease and can cause more complications.

Many Chronic Lyme patients become disabled and unable to receive treatment.

For this month of May, I am raising awareness for Lyme by sharing Lyme facts, so if you want to understand more of “What is Lyme Disease?” please follow, subscribe, like, comment, turn on post notifications, because you will be SHOCKED at what Lyme Patients have to go through!

How would you answer the question: “What is Lyme disease?” Share your answers in the comments!💚

Lyme Disease Awareness Month 2020! Day 1: Take a Bite out of Lyme Disease Challenge

💚 Lyme Awareness Day 1: Take a Bite out of Lyme Disease 2020! 💚💚💚

To raise awareness for Lyme disease, I challenge YOU to take a bite out of a lime and post a picture of it on social media, with one Lyme disease fact!

Also, if you can, please donate to lymediseasechallenge.org to support children and families with Lyme.

For the month of May, Lyme Disease Awareness is taking over my Instagram, facebook, blog, and youtube! Every day, I will post a video discussing a fact about

So, please follow and turn on post notifications so you will not miss any facts! It is good to stay informed whether you have Lyme or not!

I’m so excited to share with you Lyme facts for the next month because I have A LOT to say about Lyme disease!

I suffered from Lyme for 10 years. It is my mission in life to raise awareness, advocacy, and hope for the MILLIONS of people suffering from this disease! 💚

So, my first Lyme fact is: Lyme is caused by a bacteria, NOT lime the fruit 😉

On Instagram, tag @Lymediseasechallenge if you take on the challenge! If you tag me, @chronicallyhealed I will repost you on my stories 😄

See you tomorrow for the next Lyme Disease Awareness Fact!

 

Shirt: @lymediseasechallenge

CHRONICALLY HEALED: Kiki’s Chronic Illness Story

How I Overcame POTS and Lyme Disease: IV Therapy, Marijuana, and the Grace of God!

After being sick for 10 years, I am now alive healthy and thriving!
My healing journey was non-linear. Watch my full story to get the most out of what I learned from living with and overcoming a chronic illness.

I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS aka Dysautonomia), Lyme disease, and Babesia.

My symptoms were feeling faint (chronic pre-syncope), low blood pressure (hypotension), low blood volume (hypovolemia), nausea and stomach pain, chronic fatigue, insomnia, anxiety, social anxiety, cold hands and feet (cold extremities), sensitivities, brain fog, TMJ, neck pain, and more.

The treatments that helped me were:
– Biofeedback therapy (InnerBalance by HeartMath)
– Jugular Venoplasty (Transvascular Autonomic Modulation surgery)
– NUCCA Chiropractic
– TMJ Orthodontic Treatment
Paleo Diet
Supplements
Vitamin IV Therapy
– Medical Marijuana THC

BUT MOST IMPORTANTLY, none of these treatments would have helped if my heart was not open to receive healing. Spiritual and emotional health are interconnected to physical health. IT WAS ESSENTIAL for me to be healed spiritually before I could be healed physically.

As I grew closer in my relationship with Jesus, I grew closer to his healing. He healed my soul and strengthened me to be the overcomer God created me to be!

If you know anyone with a chronic illness and needs hope, send them this video! It is my new mission in life to raise awareness, advocacy, and hope for chronic illnesses!

Subscribe to my youtube channel, follow me on instagram @chronicallyhealed and check out my website chronicallyhealed.com for more information and insights from my healing journey!

What treatments are helping you to heal from a chronic illness? Please share in the comments, maybe it could also help others!

 

Videography by Storto Productions

Grand Canyon University Commercials!

I am so excited to share with you that I was one of 80,000 online students chosen to be featured for GCU’s Thunder in All of Us commercial campaign!

I am earning my Bachelor’s degree in Christian Studies online at GCU, and after that I am planning on continuing to earn my Masters!

With my degree, I hope to help others spiritually who are dealing with chronic illnesses. My faith really helped me cope when I had a chronic illness disability for ten years. Now that I am fully healed, I feel compelled to help others who are in the same situation I was in. The doctors don’t tell you that a chronic illness will make you feel emotionally and spiritually drained, feeling hopeless and helpless. That is why I want to be there for others and lift them up with God’s hope and light!

Keep up with my story by following me on instagram: https://www.instagram.com/chronicallyhealed/

Watch below for my commercials with Grand Canyon University!

Does Chronic Lyme Disease Exist?

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!

– Kiki

@chronicallyhealed