Chronic Lyme

Chronic Lyme Disease

It has been such a struggle for me to write this. There’s so much to say… I think I would be best served to just write a book because this post may be way too long for a blog and I might lose a lot of readers halfway through… But, for those of you who bear with me to the end, I want to thank you for reading.  So much needs to be done for Lyme Disease awareness and education.  I’m trying to do my part.  It’s very difficult and emotional to talk about, so I’ve done my best here for now…

For me, Lyme disease hasn’t been a moment in time where I might I recall getting bit by a tick, or seeing a bulls-eye rash… for me, it’s been quite the opposite of a moment.  Rather, it has been an endless series of grueling moments of pain, slow realizations of debilitating terror, and shape-shifting never-ending symptoms that continue to elude many of the sharpest and well-respected practitioners in the country.  Oh, and absolutely none of this is covered by any insurance, either.

Starting at the “beginning” is hard to do in a situation like this, where you’ve been miles down the path well before you even knew the path existed.  I recognized for sure that something was very wrong one February evening in 2016 after I had just finished a workout that seemed much more difficult for me than usual.  I had been in recovery and remission from autoimmune hepatitis (not a viral form, it’s chronic inflammation of the liver) for about 6 months at that moment, and was working hard to reclaim my health, body, and life.  I had been diagnosed with the autoimmune disease 6 years prior when I went completely jaundice one day with no explanation.  I had been unwell for a while prior to that day, but I was young and didn’t know that what I was feeling wasn’t normal, because honestly I’d felt unwell for years.  So when I was diagnosed with the autoimmune disease, I went on a strong cocktail of corticosteroids (Prednisone) and immunosuppressants for 6 years. Steroids are supposed to help bring down inflammation, and the immunosuppressants suppressed my immune system, weakening it so my body would “stop attacking itself”.  After five and a half years of this cocktail not working, my specialists gave up and told me I would have to go on the liver transplant list.  It was then that I took things into my own hands and started the autoimmune paleo diet and an all natural supplement protocol that got my liver disease into remission in less than 6 months!  So, I started to wean off of the steroids at that time, and thought I was getting my life back.  However, that’s when things got really ugly.  I slowly started to notice I was more and more fatigued. My liver remained in remission, but everything else got much, much worse!  I kept on pushing, trying to work out and battle through… Which then brings us back to February 2016 after that particularly rough workout.

That night, as I made dinner I noticed a heavy feeling start to creep over my body, like I was coming down with something, HARD.  It continued to get heavier and heavier and was so overwhelming that I was crying out in pain!  I couldn’t lift my fork to my mouth, or carry my plate.  My muscles were at complete failure.  My body felt like I was wearing a lead suit it was so heavy.  I felt like my eyes were about to pop out of my skull. I had a constant fever for weeks. I had never felt so sick or weak in my life!  Something was seriously wrong.  I tried to tell myself that maybe it was just the flu or mono.  After a few days I went to the Dr and he couldn’t find anything wrong in my blood work or x-rays.  As time continued, my body crashed even harder! 

The first several months of trying to figure out what was going on were horrifying. I was in so much pain, and was so weak, I could barely walk across the room without falling over.  The pain in my head was like someone had taken my skull and slammed it off of a cement curb.  It throbbed and ached morning to night.  I felt like I was carrying around a 100 lb lead ball on my neck.  The pain shot down my neck and my shoulders, into my back.  I had joint pain that ached and radiated so deeply in my knees, hips, elbows, hands, and wrists that I would sometimes scream and cry. Little did I know this pain would follow me for years to come.  My muscles ached so badly.  The smallest amounts of movement like chewing would cause so much pain.  I couldn’t sleep.  I would go to bed and lie awake for hours maybe catching a few minutes here and there but never into a deep state.  Every couple of hours I would crash even harder, not able to get up or move about as I wished.  I couldn’t read.  My mind couldn’t keep up to make sense of an entire sentence.  By the time I reached the middle of the sentence I had forgotten the first few words completely.  I couldn’t follow the story line of TV shows or movies.  My husband took me to see The Book of Mormon and I can’t for the life of me tell you what that show is about!  🙁  Everything was like sensory overload!  Music was too loud, lights were too bright, smells were overpowering.  All I could hear was noise and it made me extremely anxious and nervous, I just wanted to scream!  The smallest unexpected noise would send me over the edge!  I couldn’t recover from being startled in the slightest.  I had to stop watching suspenseful TV and exciting movies.  I couldn’t have stressful or emotional conversations without intense physical reactions.  My head and my heart would pound so hard, it was so loud inside of my body.  I also couldn’t find my words.  It was like my vocabulary had been deleted from my memory.  I felt like I had lost complete control over every part of my body.  We were trying to look at new houses at the time.  Sometimes I couldn’t look at more than one.  I would walk through the house, sometimes not even making it upstairs and be so completely wiped out that we would have to drive straight home.  I got scooters at stores because I couldn’t walk the aisles without fainting.  And nobody seemed to have a clue as to WHY.

My PCP told me he thought it was my thyroid.  I knew better.  This was much more than my thyroid. But I couldn’t seem to get any Dr to listen to me.  All my tests kept coming back normal to them.  I went to an endocrinologist specialist, who couldn’t tell me anything either, except that I was slightly hypothyroid and that that shouldn’t be causing all of these symptoms. People would look at me and think I looked perfectly fine!  Newsflash!  You can’t see inside someone’s body!  I spent years masking how I felt inside, so it’s no wonder you couldn’t see it on the outside!  Plus, a little bit of concealer, bronzer, blush, and mascara, and who doesn’t look normal?  I’m not a loud or overly expressive person.  I’m pretty quiet, polite, and sometimes timid.  None of the doctors I went to in my health insurance network could pinpoint anything.  So, I moved on.  I finally found a whole team of like-minded people in functional medicine, integrative medicine, holistic naturopaths, chinese herbalists, and chiropractors who helped diagnose me with Lyme Disease and extreme adrenal fatigue. Along the way, these natural health practitioners have found so many other issues going on in my body that are causing problems.  It was such a relief to find answers!  I felt like  someone was finally telling me, “No!  You’re not going completely insane!  Something really is wrong with you!”  Sometimes just hearing that I wasn’t crazy would bring me to tears, let alone the fear of the diagnosis itself.  The natural health care field goes above and beyond to find what most conventional doctors do not.  They really dig deep to find the root cause of the issues instead of treating the body like individual compartments that need repair.  I realize that this might not be the fault of Western medicine doctors because they aren’t trained to look for Lyme Disease or root causes of illness in this way and that in-depth testing of this sort isn’t in their standard procedure.  But, for so long now conventional medicine has completely missed the boat for me and for so many friends, friends of friends, family members & others I connect with through support groups.  I really wish the practices would change to help more people find the causes of their problems… I’ll share more on that in another post. (See my post – “Why I Choose Holistic Medicine – How I Healed From Autoimmune Disease Naturally” here)

Chronic Lyme disease is very difficult to diagnose and to treat.  Once it has been in your system for a while, it more often than not does not show up in the usual blood tests.  If you have had it for a long time, your immune system becomes so suppressed that your body can’t make the antibodies that would show up on the blood test.  It also hides in your organs, and forms something called a biofilm that is a protective shield around it that antibiotics cannot penetrate.  So, just taking the antibiotic like most people do when they first get bit does not work for someone who has had it in their system for a longer period of time.  I know so many people who have tried many rounds of antibiotics for their Lyme and are still so sick and now have damaged their gut and immune system so much.  My Lyme Dr says that if you catch it within three weeks and take the antibiotic, that it will kill the borellia.  But, if it is in your system longer than 3 weeks, it has gone into it’s second stage where it forms the biofilm and becomes chronic. That’s when you are in big trouble.  You may not have severe symptoms or any symptoms at all sometimes for many years.  But, when your immune system is weakened, for several different kinds of reasons, the disease will activate and spread.  So, when I was on the medications for my liver to decrease my immune system, the Lyme disease was only getting stronger.  But, the steroids I was taking were masking many of those symptoms because they pump you up and give you energy and reduce inflammation!  So, the entire time I was taking those drugs that never helped my liver, they were hurting my immune system and making the underlying cause of the autoimmune disease, the Lyme, even worse!

I never remember seeing a rash or a tick. Less than half of the people who get Lyme disease see a rash.  Don’t depend on seeing a rash to determine whether or not you may have Lyme.  But, when I think back to my childhood, I remember that around age 12 I was having bad pain in my knees and really struggling in dance classes.  The Dr said it was growing pains or Osgood Schlatter disease.  Thing is, that pain never went away, I just got used to having it.  In fact, it got worse in high school when I had a job at Osh Kosh B’Gosh.  I worked 8-9 hour shifts on my feet and would come home an aching, tired, miserable, mess.  My hips and knees were the worst!  I also had a severe bout of anemia in high school as well.  I would pass out if I walked up the stairs, or scrubbed my head in the shower.  I ended up having to stay home from school for a few weeks and had to quit all of my physical activities.  I didn’t mind the pass on gym class, but I was really sad to stop my dance classes.  I never got back to them.  I tried, but my body just didn’t work the same.  I would even fall asleep in the shower in the mornings.  Thinking back on it, I was really fatigued, and it wasn’t at all normal.  But at the time, I didn’t know any better.  My health didn’t get any better in college.  I had terrible fatigue coupled with anxiety and depression.  I started having awful digestive problems in my early 20s, too.  But still, no one had any answers for me other than that I was depressed!  Well, of course I was depressed!  I felt like total crap all the time and had unknown pathogens wreaking havoc inside my body!  It wasn’t until I was 26 that the autoimmune diagnosis came along which lead me to find the Lyme disease several years later.

My first step in treatment for the Lyme disease was to start an protocol that came highly recommended by a trusted friend and health coach.  The Chinese herbalist was Dr. Zhang.  He has his own clinic in NYC specifically for the treatment of Lyme disease and other difficult to treat diseases.  When I first started the protocol, I felt like I was dying. I started to even prepare myself for the possibility.  The reaction to the treatment was horrible.  When you treat Lyme Disease, you have something called a Herxheimer Reaction.  It’s the body’s response to toxic die off.  You feel worse and your symptoms intensify before you feel better.  In the Lyme world, we call this “herxing”.  I felt like I was in an endless herx.  I would detox daily with my infrared sauna, ionic foot baths, teas, other supplements, colon hydrotherapy, massage therapy, epsom salt baths, anything I could try to lessen the blow I would.  I would break down almost every night for the next couple years and sob because I wasn’t feeling better.  I knew that people with chronic Lyme disease did not lead comfortable lives. I could barely leave my bed for months. If I did, I paid for it hard later.  Eventually, I felt a small amount of relief.  I could read again, and I had a tiny bit more energy.  Some of the joint pain was slightly better.  But, I was still extremely ill and after 10 months on this protocol, I had plateaued and knew it was time for me to try something new.

I was and still am very involved in the chronic Lyme disease community online, particularly on Facebook.  Through that group and through word of mouth I was connected to a person who lived near me who was now in Lyme remission and was doing great!  She had gone to a local wellness center that treated Lyme with a different herbal protocol and had great success.  So, I went there, did their testing and started their treatment.  They told me that I was one of the sickest patients they’d ever had (you’d be surprised how many times I’ve heard this!).  I hated hearing that because I was already so down on my luck with the first protocol not working that I didn’t want to think of the chances of this one being unsuccessful, but they were confident that it would work.  After their testing of all my organs and systems, their opinion was that I had had this disease for well over 20 years, which would have put me back at the age where I first started noticing the joint pain.  Things were going okay on this protocol until I increased the dosage for the first time, and it hit me like a truck!  The herxing was beyond anything I had ever experienced before.  I was so sick, I couldn’t get out of bed (not exaggerating folks, for real).  I couldn’t do anything for myself.  Showering was extremely difficult.  We had to bring in help to cook, clean, and do errands and things around the house (Thank you Vicky, we would have been lost without you!).  They told me to go back down on the treatment to the first dosage, but I continued to be just as sick as I was when I first learned I had it, and I knew my body just couldn’t handle this protocol.  I once again felt like I was on my death bed.  So, I stopped the treatment all together and hoped to regain some strength.

During this time, we knew we had to find another route for treatment.  It seemed as though my body, specifically my liver was not capable of handling the herbal protocols.  They were just too strong and knocked me out entirely.  We were seriously considering a stem cell treatment center in CA.  It was a huge investment of money and time and the reviews were not that stellar.  Some people had success, others none at all.  We were so confused and uncertain of what to do.  Thankfully, my husband was still out in the world making waves and helping others and someone came into our lives at that time that has forever changed ours and we couldn’t be more thankful.  Angela, a client of my husband’s was selling t-shirts months before for her own daughter to go to CT to have a rare laser treatment done for Lyme disease.  I remember when Ryan came home with the T-Shirt and told me the story of Angela and her daughter at that time.  In our desperation for possible avenues, my husband recalled Angela and reached out to her to ask her about how that treatment went.  She said that her daughter was doing amazingly well and told us how to get in touch with the Dr who did it.  Everyone we heard of that went to have this treatment was doing much better, at least in terms of their Lyme disease.  We were put on a waiting list for 5 months.  Those were the longest, hardest, most terrifying 5 months of our lives.  I wasn’t on any treatment at all because nothing was helping.  We felt like if this treatment didn’t work, we had no idea what to do next.  I couldn’t imagine continuing to live in the state I was in for the rest of my life.  It was an incredibly emotionally difficult time for us.  We wanted to be so hopeful about it, but with our experience of being hopeful and then being let down in the past with other protocols, we knew it would be foolish to put all of faith into it.  But, we kind of did anyway.

Finally that 5 months was up and we left for CT.  We were there for 12 days, with a total of 8 treatments.  He determines which strains of Lyme you have as well as which coinfections (when you get bit by a tick, you do not get just Lyme borrelia, you also get other infections that they carry like Bartonella, Babesia, etc).  I had 14 strains of Lyme of both stage 1 and stage 2, and 7 coinfections, including Babesia and Rocky Mountain Spotted Fever.  He said that of the strains that I tested positive for, some were from 20+ years ago, and some were more recent years, so it was likely that I had been bit more than once!  It was in all of my organs, but the majority was in my brain stem and cerebellum. On the final day when he said I no longer have any Lyme in me, I couldn’t even believe it.  I was having herx reactions to the treatment, so I didn’t feel well at this time, but I knew eventually the herx would fade.  We left the office and went outside and cried in the car!  That night we went out for a fancy dinner to celebrate and headed home the next day.  I was in so much pain the car ride home, but my heart was full of hope!

When we got home things got worse.  I continued to herx for several months.  It wasn’t until 4 months later that I really began to notice a change.  In the meantime, I’d been diagnosed with yet another chronic condition called Interstitial Cystitis or Painful Bladder Syndrome; likely also caused by my immune system being weakened for so long, wrecked with Lyme disease and other pathogens.  This was another huge blow that really sent me in a downward spiral emotionally.  I had constant stabbing pains in my bladder around the clock.  Interstitial Cystitis is a different subject, so I’ll write more on it another day, but it really floored me how yet again, I get another major diagnosis in the midst of trying to recover from the previous one.  I can’t seem to escape!  But slowly, I started noticing my Lyme symptoms were getting better.  I was able to walk further, I had less pain in my head and joints, and I could start to do more than one thing a day.  We went to Hawaii in January, and I walked in the sand!  That was a major moment!  I hadn’t been able to do that just 6 months prior.

Now, exactly one year later, I am doing much better than I was before that treatment in CT!  I am able to function at a higher level!  I can cook again, I can take care of myself, I can walk around the neighborhood, I can run several errands, I just have more energy in general!  The constant headaches are gone. (I do owe some of that to Family Chiropractic in Cranberry.  Dr. Amanda Jordan and Dr. Cotey Jordan have an amazing Migraine Challenge every year, and they really helped me out, I would highly recommend them!)  The joint pain is much better.  The fatigue is much less.  My overall hope and state of well-being has really improved.  I look forward to living a full life instead of fearing a life of misery.  I am still struggling with other pathogens and organ dysfunction in my body that cause me pain and fatigue.  I still have to take very good and careful care of myself.  I can still get really run down.  But, all of my blood work currently shows no signs of Lyme disease.  There is no test that can definitively tell you for 100% certain that you DON’T have Lyme disease.  But, all other tests that might indicate that it’s there are negative.  It’s possible there are some stragglers still inside of me and I know I still have a co-infection that we did not know about at the time of the treatment in CT.  But, I’m still hopeful and determined to eliminate them and continue on my healing journey!

Having chronic Lyme disease opens you up to a whole other host of disease and health problems, not just the Lyme disease itself.  I myself have experienced severe adrenal fatigue, hypothyroidism, bladder disease, autoimmune liver disease, polycystic ovarian syndrome, endometriosis, IBS, arthritis, kidney dysfunction, parasites, anemia, gastroparesis, among other things.  If you get bit, I would urge you to seek treatment immediately.  It is not something that you want lingering in your system.  It causes all of your body systems to go completely haywire.

I am so thankful for my husband who has always believed me, believed IN me, and trusted me throughout this entire journey.  I wish it was over, but he remains so faithful to seeing me through it.  He’s been a constant source of love, support, and patience for me.  I would never have made it through any of this without him.  When everyone else told me I was fine, he stood by my side and fought for me.  So often when women have chronic illness, men, and other people in general, but particularly the men, will overlook it and think you’re just overreacting or “it’s all in your head”.  We aren’t taken seriously because we “don’t look sick”.  We sit in social situations and smile while we’re in great amounts of pain.  So everyone just assumes you must be fine.  They don’t know that adrenaline kicks in when you’re out and you want to be normal for a little while, so you ride the adrenaline and then come home and completely crash after a few hours of being “on”.  I am so grateful to Ryan for looking past all of that and for knowing my limitations and accepting them.  I’m sure it has been so hard for him to not be able to live the way he would if his spouse wasn’t so ill all of the time.  But, he has been so patient and loving in the way that he deals with it, never making me feel bad.  He knows I carry a lot of guilt, but he never makes me feel guilty.  I’m so glad he has never had to feel the pain that I feel, but I know he gets it.  I couldn’t love him more for tirelessly taking such good care of me. With everything that I’ve endured, I’ve always known how lucky I am to have him for a husband.

And so, if you’ve read this far, thank you!  I hope that you learned a little about chronic Lyme disease and what is like to have it.  If you know someone who might relate to this, I would encourage you to share it with them so that we can connect.  I love to be a source of support for my fellow sufferers. Having a community of support really makes a huge difference! Life isn’t all about suffering.  We find ways to enjoy the beauty in it, too!  Part of that beauty is supporting and loving others in the same or similar situations.  Anything I can do to help someone else who’s also hurting always helps to ease my own pain.  I’ve also realized for me that things like fashion, decorating, and creating other beautiful things around me is a way for me to channel my frustrations and pain and to bring beauty into the world.  So, I hope that you enjoy my blog and that it brings a little fun and enjoyment into your life as well!  I would love for you to share anything in the comments below, or message me, about your journey or things you like to do to bring beauty into your life, too 🙂

Happy Wellness Wednesday, friends! I hope that you’re having a great week so far! Today, I wanted to share with you exactly why I choose to use holistic medicine to treat and manage my chronic illnesses. I’m not going to go into a hugely detailed, scientific explanation. But, I will tell you about my experience, which is really the most relevant thing because if a certain kind of treatment works best, why wouldn’t I choose it anyway? We should all be doing what works best for us. So, I’m sharing with you today in case you haven’t considered alternative routes but haven’t had success in following conventional medicine either.

My Autoimmune Story…

Ten years ago now I was at work and my boss noticed that I was jaundiced. This was quite a shock to me at the time, but looking back, it probably shouldn’t have been. I had been sick already for many years with horrible IBS. I was chronically fatigued, and I suffered a lot with depression and anxiety. I thought at the time that it was all my fault. I figured the anxiety was causing the chronic diarrhea. I thought that the depression was what was making me tired and that I was just a lazy person because I couldn’t get myself to do everything everyone else my age was doing. I kind of accepted the fact that I just wasn’t a go-getter and that I was internally flawed. Turns out, I had been sicker than I could ever have imagined the entire time. You don’t just get an autoimmune disease out of the blue. It takes years and years to get to the point where your body is screaming at you and you’re severely inflamed. But, the diagnosis happens pretty quickly. So, sometimes people don’t understand or realize that they were actually sick for many years prior. We tend to just keep pushing forward and trying to ignore signs and symptoms. We brush them off in hopes they go away soon. But, all of those little signs are actually big red flags that our bodies are not functioning properly. We go to the doctor, get a pill, and then maybe our symptoms get better for a little bit, or maybe they don’t and we just learn to deal with it. That was me. I was just dealing with it. I had been to my primary care doctor a million times for my chronic IBS. She’d given me things to try, but nothing ever worked. So, I just lived with it. But, I have no doubt that was a sign that my body was under duress.

I went to the doctor the next day and he ran some tests for my liver functionality. I received a pretty frantic phone call from him as soon as he got the results. He wanted me admitted to the hospital immediately! He said that my liver enzyme levels were around 1,000 and the normal range was 21-30. I was so panicked. I had just been in the hospital a couple of months prior with a severe kidney infection (another red flag!). The last place I wanted to go was back to the hospital. But, I went anyway. I was in there for days as they ran test after test on me. They’d come stick me for blood every few hours, all hours of the day and night, until I had no spots left to draw from on my arms. I finally got to go home, but still didn’t have any answers. Eventually my doctor scheduled a liver biopsy for me. This was an awful experience, too! I hate to sound like a negative Nancy, but honestly this whole experience was a horrifying nightmare. The liver biopsy is performed while you are awake. They numb the skin where they make the incision, but everything from there you feel 100%! They go in through your rib cage with the longest, largest needle you will ever see, and snip a piece of your liver. Not only can you feel it but you can even hear it! It’s so awful. They say it won’t hurt at all, but mine definitely did. They also said that it would heal quickly and I would not feel any pain in the liver because the liver can’t possibly feel pain. Well, that’s not true either. I felt the whooole thing. Beginning to end, and I was in pain for six months afterward.

My doctor sent all of my results to a local specialist who then called and requested that I come in for an appointment. I went in to the appointment by myself and listened as he told me that I had Autoimmune Hepatitis. He said that it’s not a viral form of hepatitis. It’s an inflammatory response in the liver to my own immune system attacking it. Essentially, he was saying, my body was attacking itself. He went on to try to reassure me that this wasn’t the end of the world. I may have a shorter life than others, but I could live a totally normal life and manage this relatively easily. He said I would be on steroids for a few weeks probably and then the inflammation would calm down. I would just have to take another drug called an immunosuppressant (I took Azathioprine for anyone who knows this road) for the rest of my life. That immunosuppressant would lower my immune system so that it wouldn’t attack my liver. So, that sounded pretty manageable to me at the time. I left with a smile on my face and confidence that this would just be a minor bump in the road.

So, I started on the Prednisone and Azathioprine protocol. Weeks and weeks went by with little to no improvement. They told me that I could continue eating and drinking as I usually do. I ate what I thought at the time was a healthy diet and exercised frequently. Sadly, I was still eating healthier than most typical Americans do, but it wasn’t clean enough. I still ate frozen dinners and canned foods. I had processed lunch meats like Subway and sauces with hidden ingredients I didn’t know about. I also still continued to drink alcohol. So dumb. They told me I could! I was in my early twenties and I liked to have fun. So, I still drank alcohol. They said it had nothing to do with why I was sick. I know that it wasn’t the reason why I was sick at all, but I know now that it wasn’t helping the inflammation. I was extremely fatigued. It hurt to get out of bed and I felt like it took everything I had in my body to just get ready to go work, let alone actually drive there and put in a day’s worth.

I had no idea what to expect. Everyone else (with the exception of my husband and I think sometimes even my boss) expected that I should still be able to function just the same. You couldn’t see my illness other than the bloating, acne, and weight gain. I could still walk and talk. I wasn’t screaming in pain, so I should be able to carry-on, right? WRONG. I also know now that when you’re so sick that your liver is making you jaundice, you absolutely will feel like complete garbage. It wasn’t my fault. It wasn’t depression or laziness causing me to feel this way. I was severely ill! It’s so frustrating to look back now and realize how I let other people make me feel like I was lazy and unmotivated. I felt so horribly about myself. I had no self-esteem, and I felt like I had inflicted all of this upon myself. I even had people questioning if it was partying that caused my illness. Everywhere around me I felt like there were fingers pointed in my direction and I was extremely overwhelmed, frightened for my life, sad, anxious, and exhausted. That only made me feel worse and just go deeper into my depression.

I continued to have the IBS, but now with the Prednisone added in, I was having terrible insomnia, extreme mood swings, increased anxiety, insatiable hunger, acne, moon face (when your face bloats up particularly round), painful abdominal bloating, and weight gain. I was newly engaged at the time. Only a couple of weeks in. Not exactly how I wanted to be feeling at that time or EVER!

I went to get my liver enzymes checked every two weeks. I was so hopeful and sure every time that it would be better, but it never was. I eventually sought out a new specialist. I spent years with her, did so many kinds of testing, and still saw no improvement. In fact, things were getting progressively worse. I did try some supplements around this time. My pharmacist suggested I try things for my gut and inflammation. When I read about it online, it seemed like this was a great idea! So, I bought a whole big bag worth of supplements which totally broke my bank at the time, but I was hopeful I’d see some improvement. When I told my specialist about them, she immediately told me to stop taking all of them right away! She said they were toxic and that pharmacists don’t know enough about this to be giving me supplements. In hindsight, I wish I taken them anyway!

I eventually made a trip to Cleveland Clinic with Ryan and my mom. I went in super hopeful that they would have something different to say than the others I had already seen. But, that doctor took one look at me and said, “You need to be on Prednisone and an immunosuppressant. And, I don’t think your face is bloated from steroids, I think it’s just fat.” I’m not kidding you. He seriously said that! Crushed is an understatement. I left there and was so upset and extremely hopeless.

I finally went to see THE GUY at my insurance-approved hospital in my city. He was the top gastroenterologist and came highly recommended. He said that I had one other option. I could try a different type of steroid called Budesonide. It apparently works slightly differently and does not have as severe of side effects as Prednisone, particularly the weight gain part. Since I was always concerned about the weight gain (55 pounds worth on my 5’3 frame) I desperately wanted to try this drug. It was supposed to also not make it so difficult to sleep and I hadn’t had a good night’s sleep in four years at that point. So, we tried to get this drug but quickly realized that it was not covered by my insurance. It was going to cost $1,000 a month and we did not have the funds at that time to afford that. Far from it. So, we had to give up hope on that option. I was crushed. It’s such a shame that better medications aren’t covered by insurance companies. It really upsets me. I know so many people who just can’t afford the better options and have to settle for cheaper, more damaging treatments because they can’t afford it. So much of our current medical system is tied up in insurance and pharmaceutical companies. Money is the driving factor for everything. People aren’t getting the care they need because people are being so greedy about the money.

This was me at my cousin’s wedding. It’s the only picture that I have of me at this time in my life because I would not agree to be in any photos otherwise. I’m glad I didn’t sneak out of this one so that I can share this transformation with you. It’s so hard to share, but I think it’s important. I love how Ryan is still placing his hand on my back. He loved me anyway.

So, I continued on the same protocol. They would just keep increasing and increasing my dosages of the steroids and immunosuppressants. I was taking 60 mg of Prednisone a day and 120 mg of Azathioprine. That’s an absurd amount! Regular doses of Prednisone are 5-10 mg. I was a horrible, miserable, mess! For years I wouldn’t go out of my apartment much at all. I hated being seen in public because I looked unrecognizable. I couldn’t sleep at night, but I slept all day. I barely got out of bed. I ballooned up to 175 pounds. I am naturally very petite. My face looked totally distorted. My upper body was so much bigger than my lower body, too. I gained it all in my chest and belly. It was all anyone would talk about. I felt so ashamed. Most of the time I just wanted to die. I couldn’t see a way out of this and it was just so hard to keep going day after day. I felt so badly for my husband because I was not the person I was when we first met. But, he stayed by my side and kept supporting me.

One day, I was researching online about treatments for autoimmune disease, I came across the autoimmune paleo diet also known as the autoimmune protocol, or AIP. It was an elimination diet that took out any inflammatory foods such as processed foods and oils, gluten, dairy, grains, soy, nightshades, eggs, and sugar. The success stories sounded really great! So, I printed out the information and took it with me to my next appointment with my specialist. He looked it over, handed it back to me, and said, “this is a bunch of horse****! If you want to go buy the most expensive cuts of meat, go knock yourself out, but this is not going to solve your problem.” I accepted that and was let down that he didn’t think it was a viable option, but I didn’t consider giving it a try regardless. There’s that hindsight again!

Eventually my specialist told me that this protocol was clearly not working (you think?). We were five years in. Five years on this same exact protocol and they were now just telling me that it wasn’t going to work? He suggested I try second-tier drugs, one of which was Methotrexate, before he would put me on the liver transplant list. Yikes. My jaw dropped when he said “liver transplant list”. He started to explain about this option to try Methotrexate. Methotrexate is a drug that is used for transplant and cancer patients. It has horrible side effects including hair loss, extreme nausea, vomitting, diarrhea, dizziness, tiredness, headaches, chills, and not to mention lymphoma! He wanted to make sure that I understood all of these side effects before I started. I also had to stop drinking all alcohol or else I would likely die from the combination! I was so disappointed that a drug this terrible was my only option other than a transplant. But, I figured I had no other choice. So, I committed to no alcohol and started the drug. I was on it for a couple of weeks. It made me violently ill! I would throw up constantly. All afternoon and evening. I was so dizzy, my stomach ached like never before, and the nausea was terrible. At the two week mark, we tested my liver enzymes. With no alcohol and the addition of the Methotrexate, my liver enzymes had gone UP 800 points! That’s a HUGE amount in two weeks time.

When they called to tell me this news, it was a very somber phone call. I was alone in my apartment, and it was the doctor calling me, not the nurse. He said that he was out of options. I had tried all of the drugs that would have any impact. He told me that I would need to go on the liver transplant list. As he explained to me what this would be like and what the rest of my life would look like, my heart sunk. I felt like this was the beginning of the end. He told me that I would live a short life. Generally, 75% of people who have a liver transplant live for at least five years. Meaning, for every 100 people who undergo a liver transplant, approximately 70 will live for five years and 30 will die within five years. My specialist said given my case and the fact that my disease was chronic and would come back, I could expect about ten years. I was 30 years old. As I’m writing this, I tear up because I could possibly be dead right now if I had gone along with this as I had the rest of the conventional medicine protocols. I hung up the phone and broke down in tears. I wondered how I would tell my husband about this when he got home. How do you break this news to your family? I barely remember telling Ryan about it. I don’t really recall even what I did in the few days following that phone call. I know that I chose not to tell my family about it. I just couldn’t even talk about it. (Anyone else just go silent when they’re going through something incredibly difficult?) The doctor told me to go back on the high dose of Prednisone and Azathioprine. He thought it was better than nothing. So, I did.

I couldn’t fathom going through with a liver transplant. I didn’t want to die in less than ten years. I had barely gotten to live yet! I had been sick my entire teen and adult life. I started to revisit that autoimmune paleo diet online. I delved in deep. I researched the heck out of it and I decided that I would give it everything that I had. I set a start date for when I would first go completely gluten free. Then a week after that I would go dairy free, and a week after that I would go full-on autoimmune paleo. I had a plan and I was determined to execute it!

I was still having horrible insomnia. At night I would scroll through a Facebook support group for Autoimmune Hepatitis. One night, I noticed an unusual post. It was a photo of a woman smiling and the caption said that she reversed her autoimmune disease with an all-natural protocol using Alpha Lipoic Acid. No one posts pics of themselves smiling in that group, and certainly no one has ever said that reversing their autoimmune disease is even possible! She said she had found out about this protocol from a book called “Curing Courtney”. It was the story of how a mother reversed her child’s autoimmune hepatitis this way after years of struggling with the same conventional medicine protocol that I had been on. I immediately ordered the book and when it came I read it in one night. It was like reading my own story but through a mother’s perspective. I was so touched by it. The name of the woman who wrote the book is Denise Gabay Otten. She would soon become my hero. She too had been from specialist to specialist desperately seeking answers to save her daughter’s life. Finally, she came upon Dr. Bert Berkson who was a medical doctor of the liver himself. He had seen how liver patients were treated by the medical system and he knew that there were better options. He was working with Alpha Lipoic Acid and found that it was regenerating people’s livers who had been sick for years! People who were on their death beds were making full comebacks. However, the medical system did not approve of using this natural substance because it did not profit them at all. They told him, “we are in the business of transplants”. The business of transplants. It was all coming together. I don’t think that my doctors necessarily were just in it for my money. I don’t think that they wanted me to live a short life. But, I do believe that our medical system is severely flawed and is driven by money. They teach doctors in school to practice in ways that profit. They don’t teach them to truly heal people. So, doctors like mine, when presented with alternative options see no “scientific evidence” that anything other than their treatments would help. Why? Because no studies show that they help. Well, the problem is, no scientific studies are done on alternative treatments. Why? Because pharmaceutical companies are funding the studies. Why would they study the effectiveness of natural treatments? There’s no money in that.

I really resonated with Denise’s story. Her daughter was also able to come completely off of the steroids and immunosuppressants. She was able to live a normal, healthy life! The woman that posted in the group was also off of her medications and her autoimmune hepatitis remained in remission. I finally had a piece of hope!

I found Denise on Facebook and I sent her a private message. She texted me the next day and we set up an appointment to talk. She wanted to video chat! I was mortified because I looked so terrible and I didn’t want anyone to see me like this, not even a total stranger who completely understand why my face would be so blown up. But, I did it and we talked for a while about the protocol and what to expect. We agreed that she would coach me through it. I told her I was doing the autoimmune paleo diet and she agreed that it was a great thing to do! So, I borrowed some money from my parents to pay for her coaching fee and supplements, and I started the protocol!

Within weeks I already had more energy from the diet and supplements. I was even starting to do some exercise! I had my first blood test done at the two week mark, and sure enough, my liver enzymes had dropped! It was the first time they had dropped that much! I was ecstatic and it gave me so much hope to keep going with the protocol. I did not tell my liver specialist about it at all. I knew he would not support it. I simply told him that I would continue on the Prednisone and think about the liver transplant. So, for the meantime, I would take those drugs in conjunction with the supplements. More weeks went by and the numbers just kept dropping. Eventually, I started to decrease my Prednisone amount. Every two weeks we tested my enzymes. Sometimes they would remain the same or slightly go up a few points. This would completely freak me out! I would start to get slightly discouraged. But, Denise assured me this was normal and to keep going.

Meanwhile, my specialist who was ordering the tests was thrilled that the numbers were going down at all. They had no idea why the numbers were truly dropping, though. They thought it was because I was taking the Prednisone by itself, not because of the diet and Alpha Lipoic Acid protocol. Hilarious.

I continued to wean off of the Prednisone and was doing great on the diet. I lost 60 pounds in 5 months! My levels were so close to being in remission but for a couple of months it seemed like I couldn’t get them to budge. I had an appointment coming up with my specialist and I had to get them checked before I went. I was so excited to go see him because I was 60 pounds lighter and down to 5 mg of Prednisone. He had no idea that I wasn’t still on the large dose.

Ok, so I know this is super blurry, but this was me on the right just 6 months after I started the AIP diet. I slowly added exercise into my routine and in a few months I not only had lost the weight, weaned off the prednisone, but also was more fit than I’d ever been in my life! I was a Beachbody coach and I did the 21-Day Fix eating plan while still being AIP compliant, the 21-Day Fix Workouts both regular and Xtreme, T25, and Insanity Max30 (which honestly broke me down, I probably should not have done that one!). My face still looks a little puffy, but so much better! Hence, why my doctor didn’t recognize me!

When we got there, the nurse took us back. She didn’t recognize me at first. When I told her what I had done, she just looked at me and said “Good for you!” in a very non-excited way. Haha. This was the same nurse who prayed over me for my vanity because I was concerned about the weight gain. Yeah. How rude is that?! Pretty sure a 55 pound weight gain is not just a vanity concern. It’s also a serious health concern! They’re also the same ones who always informed me that my BMI was too high. (Huge eye roll…)

When the doctor first opened the door, he looked up from his chart, saw me, looked back down at the chart and started to back away. Then, he looked back up at me with a very puzzled look and said, “Oh my gosh, I didn’t even recognize you! What’s happened?!” I filled him in. Every last detail. I wanted him to know that there are other options out there besides damaging steroids and immunosuppressants. There are things that we can do naturally to support our bodies and begin to heal on a deeper level. He was shocked. He admitted that he couldn’t take credit for it! He even asked me if he could borrow my copy of the book “Curing Courtney”! I was like, dude, you’re a top level gastroenterologist at the best hospital in Pittsburgh. Pretty sure you can buy your own copy! Haha!

He was so impressed with what I had done. But, before I left, I wanted to know if he had my last blood test results. He went back to check. When he came back in, he had a shocked look on his face. He told me that I was in remission! I was finally in remission! My liver enzymes had come down into the normal range! Six years of battling this awful disease and I had finally made it. I’d avoided a liver transplant that would have taken my life at such a young age, and I had done it with my own will power, drive, determination, and the help of an incredible woman, not to mention the patience and support of my husband and help from my parents. I wasn’t a lazy loser afterall! Haha. I felt like I could take on the world! It was the most amazing moment of my life.

Sadly, just eight months after, my body crashed from the usage of the high doses of steroids and immunosuppressants for so many years. In a way, this was a blessing because it lead me to find the true cause behind the autoimmune disease, but it has been another extremely long and painful process. I was eventually diagnosed with Lyme disease in a very chronic, late stage. I also found that I have heavy loads of mold, metals, viruses, and other pathogens. I’m still on my healing journey, but I know that I will get there eventually. Healing from years and years of being sick doesn’t happen overnight. It’s a process in itself just to find the treatments that work without completely wiping my body out. Killing pathogens is an entirely different kind of healing than reducing inflammation. It’s so much harder on the body. But, I continue to stay on the holistic path, and have no doubts that I can heal. It’s just a matter of the right plan and timing.

My Conclusions…

So, this is why I choose holistic medicine. This is why it makes so much more sense to me to find the root cause of the problem and go after that instead of band-aiding the symptoms with drugs that only harm our bodies more. The Prednisone steroid and immunosuppressants only made my infections worse. They weakened my immune system and allowed the infections to take an even deeper hold. They destroyed my adrenal glands. I now struggle with horrible adrenal fatigue. I couldn’t watch a suspenseful or stressful TV show because I couldn’t recover from the rush of adrenaline for so long. If something startled me I felt like I was stuck at the top of a roller-coaster and couldn’t come down. Having a difficult conversation was unbelievably physically painful because I had no adrenal support to help me handle the stress. Try telling that to someone as an excuse for why you don’t want to talk to them! Haha. Nobody understood because it didn’t show on the outside. But, what those drugs did to me was brutal on the inside. The steroids also caused the mold and candida to grow rampantly in my body which taxes the liver and other organs even more. My kidneys have not been the same since. I have a horrific bladder condition, my other organs have been affected… things just aren’t the same as they used to be before I spent years on those medications. Yet, I’m not angry with the people who prescribed them to me. I’m angry with the medical system for allowing and encouraging it. No one should ever be on that high of a dose of steroids or immunosuppressants for that matter, for that long! It’s absolutely insane. Those are meant for short term use. The fact that we have no better options when there clearly are natural, safe options is absolutely ridiculous! We have been conditioned to believe that our medical system is going to take care of us. We believe that they are doing the best that they can and have the most amount of knowledge of anyone out there. We practically worship doctors because they go to school longer than any of us. But, the fact is, this system is broken and it is not helping us. It’s hurting us. It is not health care. Health care is preventing and healing conditions, not making them worse or ending one’s life too soon for no reason. And can we talk about the domino effect of medications?! Once you start taking a pill you get a bunch of side effects. So, what do they do? They prescribe you another pill to deal with the side effects of that one. And then another for the side effects of the other one, and so on. I was on so many medications I couldn’t even keep them straight! How’s that for healing an inflamed liver?

Now, some of you might be saying, well what would you do if you got into a car accident? Well, of course I would use conventional medicine. Don’t get me wrong, there are some amazing treatments, surgeries, and doctors out there! (I truly don’t think that the majority of doctors mean us any harm.) I think modern medicine is fantastic for trauma, injury, and other necessary things. But, for chronic illness, I do not find it remotely helpful. And, I’ve had A LOT of chronic illnesses over the years and I often give western medicine a shot, because when we are in pain or some kind of discomfort, we will do just about anything to get out of it. But, conventional (western) medicine for me has never had long-term solutions for chronic issues.

Also, I’d love to tell you my opinion about autoimmune disease. I do not believe that an autoimmune disease is the result of the body attacking itself. Our bodies are extremely intelligent. They know how to heal themselves. They also know how to create tiny humans, give birth to them, know that they need food from us, and they supply it. They do not just randomly go about attacking themselves. I know this now because I eventually found the root causes of my autoimmune disease: Lyme, mold, viruses, heavy metals, parasites, and other toxins. The problem is, for some reason, the medical community does not look for the root causes of chronic illnesses anymore. I don’t know if there ever was a time that they did. I haven’t been alive to see it. They just slap a name on your condition (for which there could be many individual causes, no one chronic condition is caused by the same exact thing, so I don’t know why they treat it as such) and send you home with a drug to band-aid your symptoms. You never get medication to address the root cause of chronic illness. There is a never a cure, because they don’t know why it truly happens. (I can’t tell you how many times I requested to be tested for Lyme Disease and was denied!) You can’t cure something without finding out why it’s happening at all. Did anyone ever ask their doctor why their immune system is attacking itself? What makes it do that? I would guess they would blame it on our faulty genes. It’s always those dang genes. Well, sure, maybe genes have something to do with it because when you’re in the womb you do get toxins and pathogens passed on to you. Plus, if you inherit your parents eating habits and lifestyle, that affects your health, too. But, in my opinion and experience, there is always a pathogen and toxic load involved in chronic, mystery illnesses. It’s not always just passed on from your parents. That is not to say that there aren’t illnesses that are genetic, such as Down’s Syndrome and Friedreich ataxia. But, those are in a totally different category.

Our bodies aren’t made to handle the chemicals in modern day drugs. They bring so much toxicity. That’s why there are side effects. Toxins are one of the major reasons we get sick in the first place, not to mention the fact that they feed the pathogens that also make us sick. So, pumping our bodies full of more toxins doesn’t make any sense to me or others with my same beliefs. I’m not alone here. We have to look at the facts and the truth about how what we put in our bodies effects our health. That includes drugs to treat illness. It also includes our daily diets. No pill is going to counteract a terrible diet forever. Your body will start to break down in other ways. Clearly, coming off of those drugs and removing the inflammatory foods I was eating changed my body so much! I went from dying to having a new chance at life. So, my point here is, please don’t fall victim to believing everything that medical doctors tell you to be true. It’s very dangerous. You have to be your own health advocate and inform yourself! You have the power to change your health right in your own hands. It starts with you and your choices. It is not your fault that you have pathogens and toxins. It’s not your fault that you are sick. You didn’t do it to yourself. No one in their right mind would do that to themselves. But, you can change it yourself.

My Advice To You…

If you’re wondering where to start on your holistic journey, I would highly recommend seeking out an experienced naturopath or functional medicine doctor. You can often find certified ones that are also chiropractors. There is a lot of talk about chiropractors being total quacks. I think that is unfortunate because the majority of them aren’t. Most chiropractors generally want to help you on your wellness journey. I will admit, there are some out there that don’t always know what they’re doing and follow the trends in hopes of growing their businesses. But, if you do your research, ask for referrals, and find someone who has been practicing successfully for years, you can find great ones who can really help and support you. You will find that they are more attentive to your concerns, will do more in depth testing to find out why you are sick, and they will treat your body as a whole – not as separate compartments like conventional medicine does. The human body is all interconnected. Why we treat it like separate computer parts is very puzzling. But, holistic medicine will look at the entire picture. I can’t promise you success overnight or immediate relief. But, I can guarantee that it will help you become healthier! You have to be patient and believe in it. Your attitude towards it is just as important as what you are putting inside of your body. It’s so true that health is all about the mind, body, spirit connection. So, don’t forget those aspects either.

Obviously, I’m not totally healed yet. But, I know that when I put all of these things into place, I see improvement. It’s slow sometimes and so frustrating to get through, but eventually it gets better. I know I can heal and I’m determined to do so.

I do not always have support from friends and family regarding my choices of treatment. In fact, I’d say most people don’t agree with it. It’s disappointing to me. I would hope that they would listen to my concerns, value my opinions, see what I’ve been through, and understand why I would make the choices that I do. But, a lot of them just think I’m crazy and avoiding the help that the western medicine world could offer me. Funny though, most of those people don’t have any chronic health conditions of their own to actually understand firsthand that the medical system does not offer true help for chronic illness. They don’t understand the toxicity of drugs or how they can make conditions worse. They don’t feel the pain of the side-effects. So, I have to stand firm in my beliefs and often keep them to myself. It protects my energy and my sanity! I know what I’ve experienced and I’ve put in the countless hours of research. My body is the one who has been through all of this, and it knows what’s best for me. I listen to my gut and I have absolutely zero doubts that the path I have chosen is the best one. Don’t let other people persuade you. You have to make your own decisions. If you don’t have support around you, find it elsewhere. It’s there! I promise you. There are countless support groups online and in person. You can choose your path and find others who are on it, too.

I am not a medical professional. Please do not take this as advice on how to heal your condition. Rather, let it be inspiration to help you find answers on your own health journey. The AIP Diet helped me a lot. It may or may not be what’s best for you, though. If you want to learn more about my experience doing it and the itself, see my previous post here. I’ve done a lot of trial and error with diets over the years for different kinds of conditions. Each one is unique. So, if one thing doesn’t work for you, don’t be afraid to get back out there, do some more research, and try another! You will find what works best for you. Follow your intuition. If something doesn’t feel right, like getting a serious, life-altering surgery, postpone it and take the time you need to figure out the best path – if you have the time. It’s your body. No one is in control of it but you. You can say no to doctors. They aren’t God. They’re human and they make mistakes just like you and me. Remember that. And if I can ever be of any help to you, please don’t ever hesitate to reach out. I’m here for you! Thank you to anyone who actually read this post all the way to the end! It was kind of therapeutic to write this story and I appreciate you taking the time to read it. I hope that it helps you in some way.

Be well, friends!



This is me now, healthier, happier, and still in remission from autoimmune disease! 🙂
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