I could not 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 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 treated Lyme. How I felt in May 2016 when I took a train to Santa Fe by myself. 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 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 will 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 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 the payback for whatever good energy I get 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'm going through a rough patch 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 difficult to stay positive when the results seem to be negligible. I'm thinking 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 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 it is 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, so I stopped. I think I 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 able to cook. I get tired heating 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, some supplemental therapies might be helpful. Whether it's Meyers Cocktail or Hyperbaric chamber. I haven't felt like doing anything.
I am also at a weird emotional point where I'm not sure how much I should push myself. Pushing means payback. Or does it? I'm not confident in my abilities or if pushing myself is good or bad. Will it strengthen me or make me 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. I feel that my emotions (in general) are stifled somehow. I feel very apathetic, but I also get riled up easily. So, it's hard to tell. Looking back over the last few years, things 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 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 many 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 enough for me to jump for joy. There's no jumping yet. I can't tell if what I'm feeling is normal or what. I'm confused about everything. I don't quite know what to expect and I keep thinking there's something more I should do 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 fifteen months to contact them. That's discouraging.
Make no mistake, whichever method you employ 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. Except, 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 updates on InstaStories. Thanks for reading and stay well!