pots is the pits
Hello, friends! I know that I am long overdue for a post with some health updates. So, here goes! Stay with me here as a lot of this post will be on my specific treatment plan -- I'm going to go over more of the logistics and treatment plan so some of my buds can perhaps benefit. Long story short, I've been relapsing, badly, over the past month or so. I'm going to try to cover three components of my treatment and how we're approaching each issue:
- chronic fatigue/myalgic encephalomyelitis (treating symptoms)
- my active EBV/HHV6/humanparvo virus (viruses triggered by lyme)
- pots/fainting/hypotension/nmh (treating symptoms)
- lyme disease (the root of it all)
Chronic Fatigue Doctor
First, I have been seeing a Chronic Fatigue doctor, Dr. Derek Enlander, to help treat symptoms. I'm really thankful for him for many reasons, but mostly because he has his own natural protocol and is one of the probably dozen doctors or so that actually teaches on CFS/ME. So he knows his stuff.
The trick for me was discerning: a) Are my fatigue issues chronic fatigue left-over from the lyme, as in a post-viral symptom? b) Or, are these lingering Lyme symptoms? So we explored.
This part is important: going through all of my medical files the night before my initial appointment with Dr. Enlander, I realized no one in my entire medical history had ever decided to test me for an active Epstein-Barr infection. This is unheard of. If you are currently struggling with fatigue or the fatigue issue of Lyme, I implore you to MAKE SURE your doctor is testing this. **** I know it's sad that we, the patients, have to tell our doctors what to test for, but this is an absolute necessity.
Through this testing (finally), I realized that I not only had tested positive for three different viral infections, my numbers were extremely high. Like, five to six times the amount of normal numbers.
So, I began his immunoprop protocol to a) boost my immune system b) get that dang energy up! This included two different types of custom supplements from his office (sorry, these are only sold through his office, so you'll need to see him in order to get these), electrolytes, and heppapressin shots (a mix of trace minerals, B-12, folic acid, glutathione, etc.).
I started to see improvements with these supplements, then about a month ago, I got the flu, and in the past four months I've collapsed on subways, in line for airport security, etc.
Which brings me to:
We know that with Lyme, a lot of us get POTS symptoms and have issue with fainting/standing long periods of time, etc.
For this, we're going to start introducing Florinef. I'm wanting to start small (i.e. 1/4-1/2 of the standard dosage) as well as add Potassium supplements to avoid depletion. Have any of you had Florinef experiences/success? More on this to come later. Which finally leads me to:
After both consulting with my ND in Dallas as well as my Lyme MD in upstate NY, we've come the conclusion that I'm relapsing something fierce. Long story short, I'm now ramping up on the Doxy (100mg/day to start off again to avoid herxing and working my way up), Mepron to help give it an extra "kick" and to help with the Babesia, and then we'll go from there.
Anyways, that's the latest update with all of this. Fingers crossed for favorable effects with Florinef! As always, you can reach out to me with any questions.