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

12 Tips to Grow Your Instagram

Instagram can be a great way to increase visibility for your business, cause, or passion. I started my Instagram account, @chronicallyhealed for my modeling portfolio and I used that medium to help raise awareness, advocacy, and hope for chronic illnesses. It brings me joy to connect with and inspire others in ways I would not have been able to without the invention of social media! I grew my account to over 10,000 followers. Here is how I did it:

1. Write down a mission statement in your bio. What is your goal for creating your Instagram? This sums up what you are about and why people should follow you. If your mission is to get famous and popular, this is not inciting to prospective followers. Social media is a useful tool to get an important message across- use it purposefully and not just for your own ego.


2. Like, like, and like! Like every post in your feed. Like the posts of your followers. Go to relevant hashtags and like the posts there. Be genuine with your likes, don’t like something you don’t actually like and don’t like with the expectation of a follow. Like other’s posts as a show of support. But be careful not to like too quickly or too much, this could get you banned from liking!


3. Leave thoughtful and meaningful comments on other’s posts. “Nice pic!” is not very engaging. Encourage and lift others up. Again, don’t comment with the expectation of a follow. The point of liking and commenting is to be engaged with your community. This can help grow your Instagram because it makes your account more visible for those who would like to follow you.


4. Turn on post notifications for similar accounts with large followings. This way, you can be the first to comment on their new post and your account name will be featured for all who see it. This is not to try to get the celebrity to follow you, but it makes your account visible to all of their followers who might want to follow you. In your comment, make it relevant for the post, but also summarize what you are about. For example, a few times when Yolanda Hadid posted about her Lyme disease journey, I commented first to share my experiences with Lyme. The people who follow her for her Lyme journey then saw my comment, and some followed me for my Lyme journey.


5. Post high-quality and dynamic photos. Grainy, dark photos can be difficult to see. It’s okay to edit your photos to look brighter so they are easier to see. It is also not very interesting when your feed consists of photos that look almost exactly the same. Post before-and-after photos, shareable graphics, and pictures of your smile! Also, don’t forget about the aesthetic of your captions. Instead of one long paragraph, make your captions more interesting and easier to read by using bullet points and line breaks. (Sometimes Instagram won’t do line breaks, to fix this, enter your caption to https://apps4lifehost.com/Instagram/CaptionMaker.html before posting).


6. Provide helpful content in your captions. Share about an experience you had and what you learned from it. Be vulnerable so others can relate to you in a meaningful way. A good Instagram account takes a lot of time. I spend hours every week developing quality content and writing out captions for my posts. I plan out sometimes a week in advance so I do not have to spend time during my busy days to write a post. Don’t do the minimum and expect a massive following. What can people learn from you?

7. Post frequently. Post at least once a day and utilize all of Instagram’s features: stories, IGTV, reels, live. Staying active will show potential followers that you will be consistent. But still continue to remember to post quality content! Posting frequent quality content takes time.

8. Use targeted hashtags. Hashtags like #blessed or #picoftheday are very popular, but that does not mean they are effective. They are so popular that your post will get buried in the hashtag within seconds, and no one will see it. Use a few hashtags that have over 1,000,000 posts, then most of your hashtags with over 100,000 posts, and a few hashtags with less than 100,000 posts. Find what hashtags to use by going to the top posts in a relevant hashtag and see what other hashtags they use.

9. Don’t forget about the followers you already have! The more your existing followers engage on your posts, the higher the post will rank on the Instagram algorithm. A high ranking post will be featured on the explore page, increasing your reach to more people. So, show appreciation for your current followers! Reply to their comments, like their posts, and share their posts to your stories. If they share one of your posts, share it in your stories and tag them! Ask questions in your posts and share their answers to your stories.

10. Collaborate with other accounts. Find ways to share each other’s content or work together on a post. Ask someone else who is trying to grow their following for a shout-out for shout-out. Tag them in your stories, and they will tag you in their stories. Actually, tag me! I will give you a shout-out for shout-out! Tag @chronicallyhealed in your stories so I will see it 🙂


11. Be real. You are not a robot, you are a human! Don’t buy likes, follow then unfollow, or copy-paste spammy comments/DMs. Don’t alter the shape of your body or face in your photos. People appreciate authenticity, don’t let them follow a fake version of yourself.


12. Don’t worry about the number of likes and follows. It’s great to be able to share your message, but these numbers have nothing to do with your worth as a person. Post what you love, as if no one was following you. Let your passion be your driving force, not your desire for more followers, and those followers will come naturally. And even if they don’t, you will still feel satisfied with your Instagram.

Remember, not everyone is going to like you, and this is something you will have to be okay with when you put yourself out there. The more followers you get, the more haters you get. The best way to deal with haters is ignore them. Delete their comments, and block their account. Instagram also has a feature that will automatically hide offensive comments. Go to settings>privacy>comments, then turn on “Hide Offensive Comments.” You can also filter out comments that have certain words. If Instagram is causing nothing but feelings of insecurities for you, it’s best to stay off it for awhile and develop a strong identity untied to comparisons and what other people say about you. Your well-being is more important than the number of followers.

What is your instagram? Share your instagram account name in the comments for some likes 🙂

💚💚 Lyme Awareness Day 31: There is hope! 💚💚

We’ve finally made it through Lyme Disease Awareness Month!!!! Yay!!! Woo Hooo! Yeah.

I have saved the most important bestest most special fact for last, and that is THERE IS HOPE!

It is possible to heal from Chronic Lyme Disease!

I became sick when I was 15 years old. I suffered from debilitating fatigue, nausea, POTS, anxiety, social isolation, and lots of other stuff.

I thought I was going to die 😫

…But God had other plans! 😄

I was filled with an overwhelming and unexplainable hope. Even if I had to fight the rest of my life, I was determined to get better! 💚

God led me to the right doctors and treatments as He healed my soul. After 10 years of illness, I am finally HEALED! 😄

I no longer experience Lyme symptoms. It is now my mission in life to raise awareness and hope for chronic illnesses! ❤❤❤

I’m not the only one. There are others who have also recovered from Lyme.

➡ For more of my story and treatments, watch my Chronically Healed video, front page on ChronicallyHealed.com ☺

💚💚Thank you for all your support this Lyme Disease Awareness Month of May!💚💚

I am really going to miss Lyme Disease awareness month!! I had so much fun making all of these videos, I just am so passionate about Lyme Disease Awareness and it’s all because of you! It breaks my heart that there are so many people suffering from lyme. I care about you and I am fighting for you!

Until next Lyme Disease Awareness Month, follow me on Instagram, where I speak encouragement and hope all year-round!

Keep moving forward! 😉

– Kiki

💚 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 29: Strength💚

We’re almost through with Lyme Disease Awareness month! I have had so much fun making these videos, I just feel SO PASSIONATELY about talking about lyme disease and getting this information out there.

And these last three videos will be the most important ones!

So, if you have been listening to me the past month, you have learned that lyme is just a really bad thing to get.

And we can’t always change our situation. But we can change our perspective and let our situation change us.

You can allow the lyme to make you bitter, entitled, and drown you in self-pity. This was me for many years and I hated my life.

Or you can allow the lyme to teach you compassion, patience, and humility. As I grew these characteristics, it didn’t necessarily make the lyme any better, but it definitely made my soul feel a lot better.

Living with lyme disease for ten years made me stronger as a person.

I’m not saying everyone should get lyme disease because it can make you into a better person. But sometimes when we are suffering and there is no way out, sometimes the best thing to do is embrace it. Let it teach you something valuable. Let it’s rough edges smooth out your rough edges.

The body mind and soul or so intertwined and interconnected. You might just find out that healing your heart is also healing for the body.

I learned so much from having a chronic illness disability.

I learned that your worth as a person is not found in achievements, but in your humanness. You are worthy of love because you are a human. I have grown so much understanding, compassion, and love for people because of this illness! People who are homeless or have addictions or disabilities. We have all experienced shame in ways. You are so important!

I have also grown so much faith from living with a chronic illness. I learned that God was there with me, every step of the way. He was my friend and counselor and hope. His love for me is so much bigger than anything. God’s goodness is not dependent on my personal circumstances. He is for me and with me on my journey.

I have learned to be more kind, caring, grateful, hopeful, joyful, gentle, determined, confident, powerful!

Because of my Lyme journey, I am completely overflowed with a desire to help others. It is my mission in life to raise awareness, advocacy, and hope for people with chronic illnesses.

When you are first diagnosed with a chronic illness, the doctors don’t tell you how incredibly inadequate it will make you feel as a person. That is why I am dedicating my life to spiritually and emotionally help others who are going through the same things I did with a chronic illness.

If you want to hear more about the insights I learned, follow me on my Instagram, @chronicallyhealed I try to share a post everyday to inspire hope!

Lyme Patients: What have you learned and how have you become a better person because of Lyme disease?

💚 Lyme Awareness Day 28: Mold Toxicity 💚

There is a connection between lyme disease and mold. Many people with lyme disease also experience mold toxicity and are very sensitive to moldy interiors.

So, I have to admit, I actually don’t know that much about this subject. I did not have mold issues as far as I know. I did live in different houses when I was sick, so I don’t know if that means anything. I was never tested for mold issues.

So, I need your help on this one! If you have lyme disease and mold toxicity issues, please tell me about it the comments! Tell me everything you know.

What is the connection between lyme disease and mold?

💚 Lyme Awareness Day 27: Prevention 💚

LINKS:

https://bens30.com/deet/100-deet.html

https://tickkey.com/

https://www.tickcheck.com/

https://www.bugbaffler.com/

So, after almost a month of me talking about lyme disease, you might be freaking out, like, oh my gosh, lyme disease is terrible, what if I get it???

So, if you have lyme, it is not your fault that you got it. I mean, unless you somehow purposely injected the lyme bacteria into your body knowing that it would make you really sick. But I don’t think that’s ever happened.

However, there are some ways you can reduce the risk of contracting lyme.

First is to avoid areas prevalent with ticks. This is really difficult, especially because there are areas that don’t have ticks, yet people there are still getting lyme disease. Also, pretty much the entire east coast of the united states is like crawling with ticks, so if you live there you can’t really avoid it. However, if you are going hiking in a wooded area with known ticks, there is usually a warning sign before you enter the trails. Take great caution when entering these areas!

One way to take caution is to cover up! Ticks can’t bite you if they do not have access to your skin. Wear shoes that cover your entire feet. Wear your socks over your pants. Wear long sleeves and gloves and hats. And face masks. This is also probably really hard to do especially if you live where I live in Arizona. It gets up to 120 degrees Fahrenheit. So actually you might overheat if you wore that much clothing.

But there is like these net/hat things you can put over your face, so that might help.

Also you can use bug spray that repels ticks.

Once you are done outside, thoroughly check every part of your skin for ticks. I found my tick behind my ear. I was just like tucking my hair behind my ear and I felt a bump there and I’m like uhhh. Mom what is this??? It was a tick!

This can also be difficult to do though because ticks can be so tiny and they can get in your hair and it’s a mess. If you do find one, remove it immediately and CAREFULLY. The lyme disease bacteria can transfer from the tick into your bloodstream in a matter of minutes.

There are tick removal tools like these that can help you safely remove a tick, because you do not want to crush it and get it’s little gross head stuck in your body.

Once you have removed the tick, keep it in a bag. They can be tested for lyme.

If you are tested for lyme right after you got bit, the test might not show up positive because your body has not had the time yet to produce antibodies. This is why some doctors will treat it as if it were lyme disease anyway, because the sooner you treat the lyme, the easier it is to get rid of.

Another tip on preventing lyme disease is having a healthy immune system. Well actually, this won’t prevent you from getting lyme, but it can help your body fight it off. You can build up a healthy immune system by eating healthy, nutritious foods and avoiding things like cane sugar that can feed bacteria.

So, this video probably was not that helpful, because it is really hard to avoid getting lyme disease. I just randomly got sick one day after being super healthy so I don’t know.

Conclusion: Lyme disease is difficult to prevent!

How would you go about preventing Lyme Disease?

💚 Lyme Awareness Day 26: Antibiotic-Resistant? 💚

Today, I am talking about the structure of the Lyme bacteria and how it can become antibiotic-resistant.

While antibiotics are usually very effective in treating Lyme disease when it is caught early, 40% to 63% of Lyme patients continue to report symptoms after the typical 30-days of antibiotic treatment. There could be multiple reasons for this, one of them is the shape of the Lyme Disease bacteria, borrelia burgdorferi.

This bacteria is in the shape of a Spirochete, which is like a spirally/twisty thing. It is rare for a bacteria to be shaped like this, only a handful of spirochete bacteria causes diseases.

This shape allows the bacteria to hide easily by burrowing itself in its surroundings, hiding from antibodies and antibiotics.

It is also known that bacteria can change shape to resist antibiotics, maybe this is also happening with the lyme bacteria.

Also, when lyme disease is undiagnosed and has been ravaging the body for years, the immune system kind of gives up on it. It just considers it part of the scenery.

While there needs to be more research done about why antibiotics are not successfully treating lyme disease symptoms, it could very well be that it is because it is becoming antibiotic-resistant.

This is where Chronic Lyme Disease comes into play, which I will talk about more in a future video.

When I first got diagnosed with lyme, I was put on oral antibiotics for 30 days. NOTHING happened. I was not any better or worse. So, I was put on them for another 6 months.

I grew worse and worse. Antibiotics can destroy gut flora, it felt like my digestive system was messed up for years afterward.

I wish I never went on the antibiotics, but there are some chronic lyme patients who have had success with it.

LYME PATIENTS: How have antibiotics affected you?