A study came out this week on autoimmune POTS that I thought was worth sharing. I have already discussed that researchers are exploring an autoimmune cause for POTS, but this latest study has even more exciting implications.

What’s the scoop?

A group of researchers was able to induce POTS in rabbits by targeting adrenergic receptors (mediate sympathetic nervous system activity) with antibodies. Poor rabbits. They did a tilt table test on these rabbits, which I need to see footage of immediately. The rabbits’ heart rates increased significantly above a normal range when they were upright.

Sweet, so what else did they do?

This is the coolest part, they were able to reverse the POTS in the rabbits by using peptides that neutralized that antibodies.

Why does this matter?

This strengthens the case for an autoimmune cause of POTS. If they can induce it in an animal using antibodies, then it is more likely that this is a mechanism by which POTS may develop in humans. The study also advances future treatments because they effectively reversed the induced POTS in rabbits. It is possible they can translate this treatment to humans one day.

So where can I get these peptides, yo?

Unfortunately, this is a preliminary step. This article very eloquently explains the importance of this contribution as well as the future challenges in applying it practically to POTS patients. One challenge is that POTS does not have one single cause, so this research may not apply to all POTS patients. Also, the study was done on rabbits, not humans. Overall, though, in the words of former Vice President Biden, it’s a big effing deal.

What are your thoughts on this article?

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.

As with part 1 of pre-diagnosis treatments, these are primarily epic fails and I encourage you to laugh at my pain.

Vitamin C Flush

A vitamin C flush is where you drink a mixture of powdered vitamin C and water every 15 minutes until lava comes out of your rear end. You can expect this mayhem to carry on for the next 12-24 hours. The functional medicine practitioner recommended that I do this. Whoever started this masochistic practice claims that you can calibrate how much vitamin C you need daily by calculating 75% of the amount it took you to get sick as a dog. According to this calibration I needed 24g of vitamin C per day. For a reference point, the daily recommended limit is 2g. I am not a doctor, but every aspect of this practice defies logic.

Coffee Enema

If you ever consider trying this, WAKE UP AND SMELL THE COFFEE. I had all the supplies ready to go and couldn’t bring myself to do it. Shoving things up my bum is where I draw the line. I couldn’t justify how this could heal me in any way, shape, or form. I was told this is another method of “detoxification”. The enema supposedly flushes things out of your liver through some direct access to your colon. It seems to me like you would rupture something, introduce bacteria, etc.

Does anyone remember the South Park episode where they would shove food up their butts and poop out their mouths because they were told it was healthier? If it was ridiculous enough to make a South Park episode out of, then it probably shouldn’t be part of a health care routine.

Monolaurin

This is the exception in this list of fails. During a cross country season in college I came down with what was suspected to be mono. I developed post-viral fatigue. One day I woke up and went from running a five minute mile to suddenly struggling to run a 10 minute mile. I also had some minor brain fog. I remember having to take a lot more notes and spending more time studying than usual. Monolaurin helped me immensely. I started seeing improvement after 1-2 weeks on it and recovered after a few months.

Preliminary evidence demonstrates monolaurin as an effective antimicrobial. Monolaurin has also been shown to decrease some inflammatory cytokines. Cytokines are signaling molecules used in the immune system and some are found in higher concentrations in the brains of ME patients.

I revisited monolaurin after getting POTS and ME and it did not help me this time. Monolaurin is rated as “generally regarded as safe” by the FDA and does not bear many serious side effects. If you suspect there is some microbial component to your chronic illness, it may be worth talking to your doctor about trying Monolaurin.

Epsom Salt Baths

Epsom salt baths are another method of “detoxification”. I did this for months and it did not help. The baths are relaxing, but I wouldn’t recommend laying in hot water to a POTS patient. The hot water will cause your blood vessels to dilate and will exacerbate blood pooling in your limbs.

Infrared Sauna

The functional medicine practitioner recommended that I do this to “detox”. Sitting in a sauna is literally one of the worst things a POTS patient can do. It lowers fluid levels through sweating and dilates blood vessels due to the warm environment. The only good thing that came out of the infrared sauna was that I watched a lot of Jane the Virgin. Equipo de Michael para siempre (team Michael forever).

Adrenal Cortex Supplement

Adrenal supplements are usually made of the tissue of a cow’s adrenal cortex. Pretty nasty, right? Consuming this is supposed to support your own adrenal glands. I call bull (get it?). It used to be said back in the day “you have to drink milk to make milk”. It makes me chuckle that people believed that. Oh wait, I did too, except swap out milk for adrenal cortex.

Hydrocortisone

When the adrenal cortex supplement didn’t help, the functional medicine practitioner prescribed low dose hydrocortisone to “give my adrenal glands support”. Well, it didn’t support the adrenals but it did support me in getting acne and becoming like Bon Qui Qui here.

Low Dose Naltrexone (LDN)

LDN (not to be confused with LLN), is an immune system modulator that there is a growing body of research on in its application with autoimmune diseases and nearly every “itis” there is. Even western medical doctors are becoming intrigued by LDN. One of the doctors I saw at the Mayo Clinic in Rochester was interested to know about my experience with LDN because it is on their radar.

The functional medicine practitioner prescribed the LDN to me. I had a panic attack when I bumped up to the 2^nd dosage level of it. The LDN was the only new thing I was using at the time, so the panic attack was definitely attributed to the drug. I promptly went off the LDN because the only change I saw in the month I was on it was the panic attack. Hard pass.

To see what I am currently doing to treat my POTS and ME visit the current treatments page.

What “desperate times call for desperate measures” treatments have you tried? Share below so we can all get a good laugh!

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.

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.