About 2 years ago I posted a video on my YouTube channel relaying my entire Lyme disease/Health journey up until that point. I share a short version of my health journey up until getting diagnosed on my About page. The other week I posted an updated Health/Lyme disease journey video on my channel recounting what the two years since that original video has looked like. I had several people ask if I could put that video into a blog post, so here we go!
I’m going to summarize the second half of that first video (because the lead up is on my About page) in a few bullet points and then go more in depth with the last couple of years.
-Diagnosed with chronic Lyme disease plus a host of co-infections Spring 2012
-Started on antibiotics, herbals, and supplements
-Got a picc line placed and started IV antibiotic therapy summer of 2013 for 7 months
-During the end of that 7 months I tested positive for high mold levels and began mold treatment (IV anti-fungals and lots of binders)
-Stopped antibiotics and switched to the herbal Cowden protocol. Also began treating heavy metals
-Summer of 2014 was spent on herbals, learning all about detoxing, and moving from CO to NM
-I essentially stopped treatment in the Fall of 2014 once moving because I felt I had plateaued and was doing better overall. I began working and things started to flare again, so I found some new doctors in NM.
-One doctor had me do IV ozone and after my first one I ended up in the ER due to peeing blood. We believe the ozone busted a cyst and I ended up being just fine.
-I was working 2 jobs and totally over did it thinking I was “better” and crashed HARD. Major relapse.
-I started seeing a new Lyme doctor in NM who does a lot of alternative therapies. I eventually got a port-a-cath placed and started heavy duty IV’s of ozone, silver, vitamin C, some other detox IV’s, and attempted antibiotics again (which didn’t go well- my body was so done with them!). I honestly tried quite a few treatments while living in NM and there are probably a couple nuanced things that I didn’t mention. If not mentioned it’s because they didn’t work.
-I also started bee venom therapy while in NM which I did for about 2 years (I have a whole video on that here).
-I found an AMAZING chiropractor in NM who was spot on with muscle testing and helped me a lot with my digestive issues, especially SIBO.
-I started working with a nutrigenomics specialist who provided supplements based on my genetics. This helped for the first six-ish months.
Then I moved to CO to start grad school….
When I moved, I had a seizure and passed out in a coffee shop which resulted in a concussion. This really threw off my body and nervous system. The supplements the nutrigenomic specialist was providing stopped working. I ended up withdrawing from grad school because my health could not handle the intensity of it all.
I started seeing an LLND here in CO who was Klinghardt trained in ART (autonomic response testing, a type of muscle testing). I saw the PA first who provided some herbals and referred me to a cold laser therapy specialist and my current immunologist. I did laser therapy for a few months and noticed no difference, sadly. Lasers have a lot of efficacy and some amazing benefits, but they didn’t work for me.
I returned to that Lyme clinic to see the head doctor several months later. I didn’t feel like the herbals I was put on were helping, but this follow up visit was a disaster. The doctor and I clashed and I felt like the clinic wasn’t a good match and they couldn’t’ handle my case. I ended up stopping Lyme treatment completely at this point which was the end of 2017.
I started working exclusively with my immunologist and found an amazing primary care. Both diagnosed me with mast cell activation syndrome and dysautnomia. My immunologist began running advanced testing to determine if I was a candidate for IVIG. I’ve spent the last year and a half focused on getting and starting IVIG, which I finally started in the summer of 2018.
I have still dealt with a lot of GI symptoms. Fatigue and GI are my worst symptoms! I traveled to LA to see a top GI doctor in March 2018. He is very integrative and amazing! He retested mold and Lyme, both of which were negative. He did some other extensive testing and we determined that I’m not actually absorbing nutrients and utilizing them in my cells. I was placed on several supplements for that. I’ve done several drug trials with him in the last year, as well, to try and aid in my gut healing. We have figured out that I have damage to the nerves that innervate my GI system and that is what needs to be repaired. Although IVIG is meant to repair nerve damage, it hasn’t seemed to help my gut at all. My GI feels the next best step is trying stem cell therapy, but there is no guarantee with that and it is very expensive so I haven’t made a decision around this yet.
So, the last two years have consisted of a lot of repair and rebuilding after the damage that Lyme and extensive treatment has done. My current treatment consists of:
-Myer’s cocktail and glutathione IV followed my IV fluids one week, IVIG the following week (I get this every 3 weeks), one week off of IV’s
-In terms of IVIG, I started to feel better over the last 6 months of 2018. But 2019 as been a bit harder and we are still working through what could be causing all my insane fatigue. Part of that includes figuring out my hormones as I do have Hashimoto’s and we want to make sure my hormones are in balance
-MCAS and dysautonomia managing medications along with my other medications needed (like thyroid, motility meds, etc)
-Supplements tailored to my specific needs
-My usual detoxing (FIR sauna, epsom salt baths, dry brushing, green juices, etc) as this helps me feel best since I deal with chemical sensitivities
-Lots of rest and just taking care of my body the best I can
-I’ve also been working a lot on mindset! This has made a difference and I will continue to work on this plus working through trauma and limiting beliefs
A question I get asked often is “what treatment worked best?” and “should I do X treatment?” and my answer is yes/no/maybe. I literally can’t answer that. I’m sure almost every treatment I’ve tried has helped me in some way and they’ve each built off each other. I’m not 100% yet and still have a lot of healing to do, but would I be where I am today if I hadn’t tried everything I’ve done or done things in a different order? Who knows! The way I move forward is on gut instinct. I research treatments and then go with my gut reaction on how I feel about a treatment. I’m VERY intuitive and my true gut reactions have never steered me wrong, so I trust my gut instinct with everything I have (even though it’s hard sometimes).
I get asked a lot about gut health and gut healing. This is such a complicated topic and I discuss it a lot more in depth on my Instagram, which I encourage you to check out and follow me on if you don’t. The short answer is that treating SIBO is what has helped me the most, although gut issues are still a big problem for me. Everybody’s gut issues have a different root cause and you have to figure out what the issue is for you (is it Candida or SIBO or celiac or something else) and treat that. Just changing my diet or just adding in a certain supplement has never done much for me, but that may be the thing for you. We are all so different!
I know the above two answers are a bit frustrating because we all just want that magic bullet, but everyone is so bio-individual that the way we got sick and the way we are going to heal is going to be completely different for each person. There is no one size fits all treatment or answer.
This entire health journey has been quite the roller coaster, which, if you deal with chronic illness too, know. I’ve been through some really rough times (still have them, still more to come, I’m sure) and I’ve also learned a lot and gotten a lot out of this experience. I wouldn’t be the person I am today if I didn’t go through what I have. The things that have been most helpful in my journey are connecting with others on social media who can relate and I can speak my truth with, having/creating a really good support system (thanks mom and dad and two of my best friends!), and having faith that this is all for a reason. Sharing my story has been immensely helpful for me. It makes me feel less alone, but I’ve realized it helps others which in turn helps me because it makes it feel like this isn’t all for nothing. Knowing I can support others in their journey or be the voice that I didn’t have when I first got sick means a lot.
If you don’t know, my friend Derek and I started a podcast called Beyond Your Diagnosis where we share all about living life with chronic illness. We discuss various topics related to chronic illness life and have guests on to share their stories, too. It’s been so fun and we’ve gotten a ton of positive feedback. If you haven’t checked it out, please do. You can find us on iTunes, Spotify, Stitcher, and Google Play.
I’ve been spending a lot more time on YouTube sharing my journey and have mostly just been posting recipes here. I’m happy to try and do more blog posts like this with updates and not just on YouTube if that is better for those of you who still read my blog :). Just let me know in the comments!