I have not been able to do an update in the past 5 months regarding my stem cell treatment. Not because I’m living a great life and just haven’t had the time in between skydiving and water skiing. It’s because I just didn’t want to share so-so news. I suppose it’s time.
My goal post has always been to feel better than I did BEFORE I started treating Lyme. That is, how I felt in May 2016 when I took a train to Santa Fe by myself. At the time, I was dealing with mild fatigue and panic attacks. To be honest, I should set the goal a little higher. Like, how I felt before I got Lyme. That would be in Summer of 2013. So far, I have never felt that way. I have had, at times, short intervals of energy where I feel almost normal. But then it goes away and I’m stuck on the couch for days. Couch or bed. I alternate. It’s almost as if I have a good day and then pay for it. It’s hard to gauge when I’m going to have a good day or how long it will last. Good days are sometimes good hours.
I recently attended my uncle’s funeral. I had the energy to plow through the wake, the services, the burial, I went thrift store shopping with my sister. I wore heels to all the funeral events. This is important because I haven’t been able to wear heels in years. I just kept going for about a week solid. And then I crashed. Bad. It’s been a week and I still haven’t quite gotten back to that high state. In the week after my uncle’s funeral, I have been exhausted, achy, dizzy, angry, hopeless, etc. To be fair, I did just attend a funeral for someone I care about. It’s not just that. I feel like I’m going backward sometimes.
Is Infusio working? Who the hell knows. I have had more good days and up-energy than I ever have. I treated Lyme for a year with an LLMD and never felt this good. But that payback is a bitch. I do not have my life back, I am not going out, I cannot do a day’s work. Sometimes I can wash the dishes and pick up a little around the house. It’s not much. It’s not enough. I am definitely going through a rough patch right now, but it makes sense considering the crazy week I’ve had.
I’m being told that it’s still early days and I should be patient. I’m trying. I have not lost faith in the Infusio process, but it’s not easy to stay positive when the results seem to be negligible. I’m starting to think next steps. What if Infusio doesn’t work? Is some energy better than none?
I am NOT doing the Infusio home protocol. I assume that if I talk to the Infusio doctors they will tell me this is why I feel bad. I don’t believe in the home protocol. The basic tenets are: Clear histamines, inflammation control, and detox. I already do those and have been. I also feel that it’s a one size fits all solution and I didn’t feel good on it. I don’t feel as though I am having histamine issues. Then again, who knows? Maybe everything I’m feeling is histamine related and would help by taking something. I don’t know.
Being transparent here, I am not doing anything. Not the home protocol, not even my daily supplements. I take a B-vitamin when I remember to. The supplements game was making me depressed and I just stopped. I think I merely got tired of it. I try to eat well. No wheat, dairy, low meat, no sugar, no processed foods, but my diet isn’t great. The stress of the funeral has caused me to eat like a teenage boy (who can’t eat gluten.) That is, I’ll have dairy free, gluten free vegetarian pizza. I have french fries about once a week. I also gave up rice, which has seemed to help some. I’m still not really able to cook. I get tired heating up a bowl of soup. I will say this, a few weeks ago I had a few pieces of french bread and I didn’t feel like I was going to die. That’s something. It goes without saying that some supplemental therapies might be helpful. Whether it’s Meyers Cocktail or Hyperbaric chamber. I just haven’t felt like doing anything.
I am also at a weird emotional point where I’m not quite sure how much I should push myself. Pushing means payback. Or does it? I’m not confident in my abilities and I’m not sure if pushing myself is good or bad. Will it make me stronger or weaker? The analogy of a rollercoaster that Infusio gave me is accurate. It’s up and down all day long. The ups and downs are exhausting. I may also have some PTSD from herxing. I don’t want to herx so I avoid anything that might cause it. Last year (before Infusio) I had a catatonic herx that scared the shit out of me. I’d like to avoid that.
I have mental and emotional breakdowns. Sometimes it’s just malaise and ennui. I have brain fog that feels like pieces of a puzzle are missing. Furthermore, I feel that my emotions (in general) are stifled somehow. I feel very apathetic lately, but I also get riled up very easily. So, it’s really hard to tell. Looking back over the last few years, things do seem a trifle better. Perhaps it’s about redefining my new normal. I don’t know what that means. I keep thinking I want to get back to where I was before Lyme, but maybe that’s just not possible. I want energy. I want to be able to go to Disneyland and be tired like a normal person. Yet, my being awake and lying on the couch makes me feel like I spent the day at Disneyland.
If you can’t tell, I’m frustrated. I, like a lot of people who went through Infusio, am hoping for a miracle. This is not a magic bullet and the small amounts of improvement I’ve had are not quite enough for me to jump for joy. There’s no jumping yet. I honestly can’t tell if what I’m feeling is normal or what. I feel confused about the whole process. I don’t quite know what to expect and I keep thinking there’s something more I should be doing other than waiting for the Infusio process to take full effect. I hate waiting. A year is a long time. And now Infusio is saying that if we don’t feel better in 15 months to contact them. That’s discouraging.
Make no mistake, whichever method you use to heal Lyme, no one seems to be able to get well in under a year. At least, not people who already have reached the chronic stage. It’s just frustrating. I’m over it. I want out.
So that’s why I haven’t posted. I feel like I’m just complaining and I need to be patient. But I feel like stomping my feet. Unfortunately, I don’t have the energy to do that.
I am more than happy to communicate and answer questions (if I can). I also post weekly updates on InstaStories. I post those on Tuesdays, but sometimes I add things during the week if it’s relevant. Thanks for reading and stay well!