My Story of Chronic Illness
If you’ve ever heard of a supplement graveyard, you’ll know that it looks like hundreds of supplement bottles stacked away in all corners of your cabinets, spread across countertops, in places you forgot you put them. You, the owner of those supplements, keeping every one of them as you have fear of throwing away a possible “lifeline”. Maybe it didn’t work then but it could down the road! Sound familiar? If you have had any type of chronic illness or chronic symptoms, this may resonate. My stacks of supplements is dwindling and I couldn’t be happier about that.
I full heartedly believe that there are multiple components to a chronic “illness”. Usually including body, mind, and spirit. After chasing the physical for so long, I now am coming to understand how everything is connected.
Looking back, I was always a worrier. This was a protective mechanism my child psyche thought would keep me safe, along with striving for perfection. I have found a lot of people who are diagnosed with illness later in life tend to have some sort of chronic fight/flight pattern involved.
There were times in my childhood where I would panic or have OCD like tendencies. Especially around the time of middle school. When I got to high school, I somehow suppressed those emotions and felt great by the time I went to college. Honestly, I had an all around picture perfect life from the outside. Great friends, close family, and a harsh inner critic. When I was a sophomore in college, I lived in a rental apartment close to school. I started getting a sensation where I couldn’t take a deep breath and had to consistently yawn to feel satisfied (what I now know is air hunger). I also started experiencing a new level of anxiety and worry I had never felt before. I would catastrophize everything, irrational fears would come to mind such as an asteroid hitting the earth and me being right in the middle of it. Anything that could happen to me that was threatening my brain honed in on. It was miserable. My brain wanted to keep me in this place of fear and I didn’t know why. I started seeing counselors, trying to figure out what was causing my mind to be so anxious. I started getting panic attacks often. When I finally received the diagnosis of anxiety disorder, I was relieved. Ok, we have an explanation of what’s going on with me. Oh, millions of people have this? They said it was normal? Great! (Cue eyeroll). I was put on medication and told to have a good day. The medication did help, the panic attacks lessened and I was able to live a mostly normal life. After a couple of years, I decided to go off the medication. That turned out to be a mistake. I was more panicky than ever and clearly I was someone who needed to be medicated. Definitely a chemical imbalance in my brain, they said.
The tiger my brain thought was chasing me all the time!
If only I knew then what I know now...I was on medication for the next 7 years after that. Did I get better? No. In fact, even with all the therapy, I was getting worse. I started to not be able to go running anymore or walk too far away from the house or car. I was given an inhaler because I felt like I couldn’t breathe. Going to higher floors in buildings set off panic like a saber toothed tiger was coming at me (see above!). My world got smaller and smaller. It was hard to explain to anyone. I was told to “relax” or “calm down”. But my mind was like “Don’t you see that bear? Don’t you see that tiger?”.
No one understood me. I tried everything including exposure therapy, meditating (if you are in chronic fight/flight good luck with this one)… I tried the herbs, the teas, etc. and after a while, I made the decision to get off the medication again.
This time, once I weaned off (with the help of my Psychiatrist), I started having weird reactions. Like, I would react to makeup which I never had before and my eyes would swell. I had gut issues and started getting badly constipated. Within about 6 months of being off the medication I started getting other weird symptoms that popped up such as eye burning, brain fog, post nasal drip, irritability, and dark eye circles. I was loosing weight without even trying. And then, C@V!D hit. I started having panic like I never had before. I couldn’t sit still, couldn’t swallow my food (it would take me an hour to eat half a meal), I couldn’t exercise without having an asthma attack. My air hunger was at it’s height.
When I started noticing all the discomfort I was feeling more and more, I reached out to my Naturopath. I knew somehow a lot of it had to do with my gut. She’ll know what to do, I thought. I also saw my regular doctor who wanted to put me on PPI’s (no thank you!). My intuition (although I didn’t know that’s what it was at the time) told me not to take them. There’s something else going on. With my naturopath, we took the GI Map, mold mycotoxin test and heavy metals test. The gut test showed dysbiosis and an overgrowth of yeast. Yay! We found the culprit. Let’s do a protocol so I can get back to my food loving self and wine! So I was put on large doses of herbs for a month. 9 days in, I crashed. Omg did I crash. I won’t go into how bad I felt, but I went to Urgent Care on more than one occasion thinking I was dying. What I now know is to never go on any protocol without drainage pathways being open. There were so many signs that mine were clogged and unfortunately this wasn’t addressed by my Naturopath before the protocol.
What now?
I won’t go into specifics, but this was a very low time for me. My body felt broken, like it had betrayed me. Why won’t it just work?! There were days I went to bed not knowing if I would wake up the next morning. I had weird spots that showed up on my hands, I had reactions every time I would eat something, and felt dizzy and activated at all times. I was in a total Dorsal state of being. (If you are unfamiliar with Dorsal, I will write more about the polyvagal theory in a later post- typically you are in between sympathetic state and freeze state). My body was so much worse than baseline at this point. I decided that another doctor would be my savior. I started seeing a Functional MD. She ran many tests and alas! I had a parasite! Blastocystis Hominis. Ok, so that is what is responsible for ALL of this chaos. Stupid bugs. *I will note that typically this finding is just a red herring. It’s not usually the cause of someone’s symptoms, in my opinion. She put me on a protocol of antibiotics and herbals. She also found nutrient deficiencies and had me taking my blood pressure and blood glucose daily (I can’t even tell you the fear this created). Around this time I also started seeing a GI doctor who suspected I had SIBO. This created some confusion but my Functional doctor said her protocol would also help with that. So. Many. Supplements. And not to mention she was $400 per hour plus the cost of the supplements And that was just the beginning- being “sick” is not cheap friends. I would hope my experience and insight would save anyone dealing with similar issues some money in the long run. But I know, from my own journey, you really have to find your own way to that realization. I read all the blogs. All the tips. And it still took me a long time. That is because our minds are so set on trying to fix us it becomes life or death in a way. We become hypervigilant. Once that storm calms (if you allow it to), things become much clearer.
Every new symptom that would pop up (and it seemed daily) made me sure I was dying. I could still barely eat and when I did manage to eat I had weird reactions to everything. I was on those Facebook groups literally 24/7. I could not stop researching. I tried every elimination diet under the sun. NOTHING helped. I could barely get out of bed or off the coach. I was working full time this entire time. Luckily from home and with the pandemic things had slowed a bit and somehow I was able get my work done from the couch. I really really don’t know how I did it. I will say it was a great distraction from fixing myself and feeling all my emotions.
Some of the things I did during the worst of it, I don’t know how it was possible. My husband and I bought a house, furnished it, etc. It was a very very hard time. I would stand in the shower and just cry. My husband had to console me on a daily basis (he’s the true hero in all of this!).
My husband, Chris and I on our wedding day. This was a year after fully crashing. I had finally found some reprieve with one of the medications I was taking at this point. I was nowhere near feeling great on this day but a lot better than where I started and was able to be in the moment and have fun!
After finishing the Functional MD’s protocol I was nowhere close to being better. In fact, I felt worse than I did before. What was going on? My doctor was confused as well. She thought it could be mold or Lyme at this point. I told her no, it’s neither of those things! (Cue another eye roll). My GI doc then put me on four weeks of antibiotics for SIBO. No change. I enrolled in a Naturopath’s SIBO class thinking that it is still just a horrid case of SIBO and I needed to do more for it. Her program did nothing, I couldn’t even tolerate the protocols. Even though that program was a dud, I was able to meet a friend who was also going through a tough time. I like to think we helped each other, and I am so grateful for her support at that time. It’s a tough position and no one understands unless you are in it too. She understood.
That is where my research journey continued. I looked high and low for what else could be wrong. I saw all kinds of health professionals (at least 12+)- dieticians, coaches, naturopath’s, functional MD’s, medical intuitives. More antibiotics, more herbs, more money.
During this time I also want to point out that I was tested for everything under the sun. I had a colonoscopy, endoscopy, and some other not so pleasant tests. Finally, my conventional GI doctor looked at me and said “I think there is an emotional component for you”. He gave me a referral to a spiritual coach he had worked with. I was not going down that route. This is all physical. This is happening to my body. I need to get this fixed. AND NOW! Who was going to be the person who “fixed” me?
Physical things I’ve tried :
These are the highlights, not everything- and just because something didn’t work for me doesn’t mean it wouldn’t work for somebody else.
Rifaximin (5 rounds)
Alinia
Neomycin
Flagyl
FC Cidal/Dsybiocide
Gut healing supplements- too many to list
Additional herbs for parasites
Supplements Galore!!
Itraconazole (was on this for many months)
Purium products
Celery Juice
Ozone therapy- nasal, rectal, autohemotherapy
PK Protocol
Vitamin C IV’s (for reactivated EBV)
Megaspore and other probiotics
Laxatives
Glutathione
Salt Flushes
Coffee Enemas
Acupuncture
LDN, Ketotifen (and more)
Cholestyramine/Welchol
CBD
Diet: Low histamine, low carb, plant based, animal based, grain free, sugar free, gluten free, dairy free, everything free!! (I still eat organic, pasture raised, with more fruits than vegetables in my diet. I am mostly dairy and gluten free but will eat raw dairy and only natural, unrefined sugars such as honey or maple syrup). What I’ve learned, it’s not the food- it’s your body’s reaction to the food.
Physical things I continue to do:
Red light therapy is so beneficial for any sort of inflammatory condition. I even use it on my dog!
A few specific supplements including Lion’s Mane, PQQ and B Complex
Red light therapy
PEMF
Sauna
Binders
Lymph Massage
Minerals
Visceral Manipulation (I am currently going to a new PT who I love)
Reiki and Energy Work
Nucca Chiropractic
Low toxic lifestyle
Castor Oil Packs
Diagnosed with CIRS
I started seeing two new Functional doctors. Both fantastic people who I’m still under the care of today. I also thought at this point, what the hell, maybe I’ll just reach out to this spiritual coach my GI doc told me to contact. It wouldn’t hurt (more on that later).
Boy, did I feel toxic at this point. I had renewed hope with the new doctors but I was still experiencing all the symptoms. My body odor reeked, my gums were receding, I couldn’t breathe, and I felt emaciated and weak. Finally, I came across something called CIRS in a book I read. “Toxic” by Neil Nathan. I was sure this was what was going on with me. My cell danger response was flipped on and I could not get it to turn off. When I went to see one of the new Functional Doctors and told him my symptoms, he said. Oh, you definitely have CIRS, lets do the bloodwork to confirm but I can tell you right now this is what’s going on. When those test results came back and showed I had the HLA gene for mold, along with the other blood markers, I. Was. SO. Relieved. I cried and cried thanking God for finally having a diagnosis after all the searching. I could relax, I was going to be better in no time. At this time I’d like to note that I made the decision to not pursue extensive Lyme testing. I had been tested several times for Babesia due to the air hunger and Borrelia, but I decided not to do the functional testing as intuitively I did not feel that it was what I was dealing with.
At the same time of being diagnosed with CIRS, I conducted a provoked mycotoxin test and some other tests with the other Functional Doctor I see. I had some elevated markers and through both of them I went on binders. I saw absolutely no change in symptoms. How could this be? Why was I so different? Why was I so special? Were we living in mold even though I was sick before we moved here? What I was told at this point is that if you have CIRS it’s almost impossible to heal in mold. At this time we also had several mold inspections of our home. There was mold identified and removed. But our scores just never went down. Thousands of dollars later I decided not to retest. We got everything, and the stress that put on the body to hunt down and have to avoid mold, probably made me sicker. We also have air purifiers in every room of the house and changed out several pieces of furniture. In that time I did additional protocols that didn’t move the needle. IV’s and supplements. Vitamin C Iv’s made my air hunger excruciatingly worse. I was tested for MCAS due to my reactions to other things but was not positive. Nonetheless it was surmised that I was dealing with Mast Cell Activation (not syndrome) and multiple chemical sensitivity. Nothing was confirmed on that front as it is hard to do so.
I will also mention that functional medicine is great, but it has a way of pinpointing everything possible that can be wrong. That can create additional fear, which doesn’t allow the body to heal. Also, just because an authority figure is telling you something is so, doesn’t mean it is. Always listen and trust your gut.
How is it all connected?
Now, back to the spiritual coach I mentioned before. I was seeing her weekly and so intrigued by her work. Intuition…wow it blew my mind. But the doors to my heart were closed. I was so fixated on figuring out my physical issues, what’s wrong with me, that I couldn’t let my guard down. I was in protective mode 100 percent of the time. She taught me a lot. We didn’t get very far in my progress, but that’s on me. She was the door to the world that would open my eyes. We worked together for about three months. In that time I was so fascinated and started seeing psychics, learning Reiki, getting Reiki, looking into everything around the spiritual realm. How did I not know about this before? And how would any of this energy work, spiritual work, emotional work help with the physical? I had no idea the connection….
From there I would see several additional health and brain rewiring coaches, becoming more aligned with what I truly need. I will share more on that later. But I do want to touch on intent. When we continuously have an intent to “fix ourselves” whether that is through energy work, trauma coaching, supplement protocols, spiritual learnings, it keeps us in a state of survival. When we come at it with curiosity, it changes the game completely. That is not easy to do and it takes time to rewire that pattern. It is possible, and something I am still working on every day.
I look forward to sharing more about my journey and what I’m currently doing. There is a lot I have learned and am continuing to learn with healing modalities. There is no black and white with healing. It is very gray. I won’t deny that there are physical things that have helped me in this process. The detoxing decreased my toxic load and for many of us that is a big issue- our detox pathways being blocked. But, the biggest shifts came with nervous system work and are still happening. Sometimes the answers aren’t necessarily outside ourselves, but the truth is within us. Until next time, keep strong and thank you for reading!
