To be honest, it’s been a struggle to write because it’s hard to come up with words for where I am, where my family is. If I look back over the years since I first became disabled on July 10, 2013, I see huge progress. Back then I was bed bound most of every day,…
Update: 4/7/25
It continues to be pretty rough! I’ve had some good moments here and there - where I’ve been able to get out of the house for a few minutes or even a couple of hours - I got to spend a little time with our newest little grandson last Friday, oh what a joy! But…
TruDose (PRP) Update
My first round of TruDose (PRP) 8 weeks ago was set to target MCAS (mast cell activation syndrome). I’ve been experiencing a major mast cell flare since then, which apparently is not uncommon. Mast cells are part of the immune system. They respond to specific pathogens by releasing different types of chemicals - most commonly…
Mast Cell Activation Syndrome is one of the co-conditions that often comes with tickborne disease. I’ve had it under control (mostly) but wow this flare is intense. Today Yesterday I’m so itchy! Benadryl (oral and topical), cromolyn sodium, HistDAO, Singulair, Xyzal, and stinging nettle are the go-to’s for me to calm it down. But understanding…
Update: 3/6/25
Appointment with Dr Harris was great as always. We reviewed the latest testing - click HERE to see the full results. Tests show: Lyme Babesia Bartonella Cytomegalovirus Ebstein Barr Virus Streptococcal Significant and widespread amyloid fibrin microclots - indicating Long Covid Hormone dysfunction Inflammation (which could be from autoimmune issues but more likely from digestive…
I’ve started a new therapy called TruDose - they take some of my blood, spin it down to get platelet rich plasma (prp) and inject it back into my bloodstream. As part of the process they get a baseline platelet count - mine was 114 (Ref range 150-450) so a little low. Blood pressure has…
Fatigue & Update
I’ve been in bed most of the day every day since 1/1. Pain has been higher, I’ve had rashes, headaches and digestive issues - but that’s not why I’ve been in bed. Fatigue is. Fatigue is one of the hardest issues I deal with on a daily basis. And it’s one we don’t talk about…
Why? And Now What?
I went for my 3 month follow up / re-check at lymestop this week. Nothing has changed. Still have all the same infections. The LS doctors expectation is that patients should be 50% better (I’m worse - which is not uncommon for me). He thinks I was reinfected. I’m not convinced. I think treatments simply…
Update Oct 12, 2024
I can’t believe we are less than 11 weeks to Christmas! How did this happen? I finished the Master Cleanse - which wasn’t as bad as I thought it would be. I actually had less pain and more energy. I had some digestive trouble but for the most part, I feel like it was a…
Update: 1 day post Lymestop
I had 4 treatments Monday & Tuesday. By Wednesday, I was having major detox symptoms: headache, neck pain & stiffness, back pain, all over joint & muscle pain, weakness, nausea & abdominal discomfort. That tells me the treatments are effective. That’s what it’s supposed to do. It’s causing my body’s immune system to kill pathogens…
PhilippiJoy 