Pre-Diagnosis Treatments- Part 1

This is part one of a two part series where I will go over the pre-diagnosis treatments that I tried. Most of them are epic fails and I encourage you to laugh at my pain.

Whole30

I had been feeling unwell for a while but it became clear in the summer of 2017 that I needed to do something. I decided to do a Whole30 (a strict paleo diet) as a last ditch effort before making a doctor appointment to find out what was going on. A Whole30 is where you basically eat twigs and berries and become a sugar deprived monster.

Today I actually eat a modified paleo diet similar to the Whole30, but now I know better than to do a dramatic change like that all at once. Our bodies are sensitive to dramatic changes with POTS, so slow is the way to go. I started having orthostatic issues while on the Whole30. I believe now that the stress of changing my diet so dramatically was the straw that broke the camel’s back. After the Whole30 I was worse than ever and began seeing doctors and getting tests done.

Valtrex

After having tests on tests and everything was normal, doctors began suggesting that I must be latently depressed (I wasn’t). A couple doctors were huge jerks about it.

I’m sure many of you can relate to that. So, with all the western medicine doors seemingly closed I began seeing a functional medicine practitioner. She said I had chronic infections of various types including the Epstein Barr virus. The first thing we tried was Valtrex since it is an antiviral. I felt like straight up garbage on it. The functional medicine practitioner told me this was due to a “die off” reaction. I have since learned that whenever you get worse on something it is conveniently called a “die off” reaction.

Bac-T

Bac-T a homeopathic tincture that has antiviral and antibacterial properties. A chiropractor from my hometown who I respect very much gave it to me as an alternative to Valtrex. After a month on Bac-T I really thought I may be getting better and even hit around 70% of pre-illness function. Six weeks later I crashed and continued on a decline, with or without the Bac-T. Bac-T tastes like herbs mixed with rum but who cares, right? My husband and I joke that I would eat lemur left nut (LLN for short) if it were proven to make me feel better. I’m sure you can relate. LLN for life.

Cholestyramine

This is a medication that binds to bile salts to make you eliminate them. The body compensates by using cholesterol to replace the bile salts, thus reducing overall cholesterol. Cholestyramine is typically used to lower cholesterol. The claim is that this process also lowers the amount of toxins stored in bile. My functional medicine practitioner advised me to take Cholestyramine while I was on Valtrex or Bac-T. I took it for about a month before I concluded that it wasn’t safe for me long term. I remember from college (I was a Biology major) that cholesterol is an important piece of the structure of our cells, so I wondered what kind of long-term effects this excessive leaching of cholesterol would have.

Antibiotics, Antibiotics, and More Antibiotics

The functional medicine practitioner suggested that I switch to antibiotics when antivirals were no longer effective. I began with Docicycline and Flagyl on rotation. I initially thought these antibiotics might be helping but I now know that symptoms fluctuate. After a few months on antibiotics, I crashed hard and began having new symptoms. My stomach became very distended and I would get shooting pains in my stomach that would knock me to the ground. When I asked my functional medicine doctor about it she said it was a “die off reaction” and suggested I add Azithromycin into the antibiotic rotation. That last recommendation woke me up that I needed to look at all of this rationally. I was just damaging myself. I listened to my gut (literally and figuratively), went off everything, and started making plans to get reassessed at the Mayo Clinic.

High-Dose Vitamins, Minerals, Digestive Enzymes, and Probiotics

To support my body from the illness as well as the heavy antibiotic usage, it was recommended that I take high-dose vitamins, minerals, digestive enzymes, and probiotics. I do not know if these have value in other circumstances, but it did not help me at that time. My energy did not improve in correlation with including these and my GI system was still in agony from the antibiotic usage.

Chiropractic Care

At one point I thought this may be helping, but when I crashed again I realized it was coinciding with a natural fluctuation of symptoms. I do respect chiropractic care. As a former athlete, chiropractic adjustments were crucial to my body staying healthy and injury-free. The chiropractor I was seeing at this time (spring of 2018) also worked with supplements, applied kinesiology, and NET (Neuro Emotional Technique). Ultimately, I stopped seeing this chiropractor because I could tell something deeper was going on and that I needed to get reevaluated in western medicine. I also tried chiropractic care with my hometown chiropractor, but I couldn’t visit regularly enough to do it right. I may revisit chiropractic care in the future, but for now I have other ideas I want to pursue.

Lemon Water

To see what I am currently doing for treatment visit the current treatments page.

Pre-Diagnosis Treatments- Part 2

Have you tried any of these treatments along the way? How have they worked for you?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.