Its a sweltering hot day. Its a dosing day. And I had to leave the house for a prescheduled oil change on my car. I’m sitting in the waiting area and still sweating. Summer months tend to be the hardest on me. The heat is so horrible. I can’t regulate my own body temperature and with my Lyme carditis my heart starts palpitating and fluttering and makes me very dizzy and lightheaded. I’m constantly drinking water, though I still feel dehydrated. While everyone else is out enjoying summertime activities I’m confined to air conditioned rooms or bed. (This is why I chose to get married in January in the middle of winter so I won’t overheat, even honeymooning in Paris in the winter for the same reason.)
To top things off I decided to wean myself off of my Nucynta (for pain) so I’m suffering slight withdrawal symptoms (upset stomach, bowl problems, insomnia, sweating (more than normal), anxiety, etc.) I was up last night at 120am after only 4 hours of sleep due to the insomnia. My fiancé got up with me and despite having to work today at 1pm he stayed up with me until 830 this morning when I was finally able to go back to sleep. He took great care of me and didn’t complain once. I told him to go to sleep but he wouldn’t until I was doing better.
So why am I torturing myself with withdrawal? Well first of all my refill scripts have been lost and my doctor won’t rewrite them. I don’t know if my fiancé accidentally threw them away or with my Lyme brain I did, but they are nowhere to be found inside my house. Secondly, I really don’t think that I need them anymore. Here’s why…
As most of you know I have been fighting Lyme and confections with treatment for the the last 4 plus years. I was misdiagnosed for 13 years prior to that, suffering with no answers. I have been through the ringer with treatment. I’ve tried holistic and natural supplements and nothing has been working to the point where I felt like I was in healing in a very long time. I previously tried a supplement regimen that was making me feel better but I wasn’t getting better. I was still having stamina issues, pain issues, herxing and the list goes on, but at least I felt better.
I have been struggling for the last 6 out of 7 months with very severe depression. My pain had continued to get worse. I was falling farther and farther down the rabbit hole. I have also been struggling with what to do in my life as far as treatment goes. Do I give up? Do I stop antibiotics? Do I try holistic again? “What to do?” became the dominating question that was haunting me every day. My doctor told me, at the end of May, to take 4-6 weeks off of dosing and let my body heal some. I decided that in that in that timeframe I was going to do whatever I could to get better without antibiotics, I was throwing my own personal “book “at these things that live inside of me.
First thing was first, I did a cleanse which helped a little. Secondly, I got a new tattoo. Every time I have gotten tattooed, I always have an upswing afterwards and start doing better. I was trying really to hard to eat better and lose some weight. I was feeling better. But then I got a surprise. A friend of mine introduced me to a new regimen of supplements and products. I was extremely skeptical. Last time I tried a new product I did start feeling better but I knew I wasn’t getting better inside. But hell, I was grasping at straws and was willing to try anything that “might” make me better. That was a month and a half ago. And now I feel like I am healing. Not just feeling better but healing and getting better.
I can shower, for the first time in nearly 10 years without having to sit down and “take a break” and I don’t feel exhausted afterwards to the point where I need to nap. I have energy again! My mood has improved. I’m losing the weight that I need to. My pain is under control (hence weaning myself off of the Nucynta.) My gut has healed. My ticks (mostly my shaking/tremors/twitching) is starting to get better on its own. My OCD is more manageable. I’m laughing again. My good days are far outweighing my bad days. I finally feel like I am making progress again.
I’m still at a loss as to what to do with my antibiotics. I stayed on the supplements but decided to do at least one round of dosing to see if I noticed any difference. Other than upsetting my stomach and making me sleepy on dosing days, I haven’t seen any difference on antibiotics versus off of them. So I’m still struggling with what to do.
Going off of antibiotics all together is scary to me. They saved my life and without them I would have been dead and gone 3 years ago. But the results I’m seeing with the new regimen I’m on is undeniable and I want to continue to see how it goes. I’ve talked to many others who are on the supplements and have had amazing success that goes above what I’ve already experienced (they have been on the supplements longer than I have too.).
As of now my plan is to stay with what I’m doing. I’m going to talk to my LLMD about putting me on maintenance medications, which is antibiotics only 3 days a month. That’s what I’ve been striving for for years now. Maintenance. Remission. I finally feel like that’s possible. Not only do I feel like my Lyme is getting better but so is my Babesia and Bartonella. I feel like a new person. Don’t get me wrong. I still have bad days. After all, I’m still sick and as of now with the medical community not having a cure, I will remain sick for the rest of my life. I was told when I began treatment to strive to be 80% of what I once was. I’ve been running at 40-50% percent for years. Right now I think 80% or higher is possible as long as I keep doing what I’ve been doing and I haven’t even been able to dream that high since I first started treatment and had no idea what I was in for.
I’m still in the hot, humid waiting room. I’m starting to get a little sick to my stomach again and I can feel the effects of the weather starting to take its toll on my body. But I’m sipping on my “pink drink” and still feeling better than I have on any previous dosing cycle.
Its the little things in life that surprise you. Just when you think you’re at the end of your rope someone/something ties a knot at the end and helps hoist you back up. I’m not saying I’ve found the “cure” for me, but I am saying that what I’m doing know is working and so I’m staying with it. I’ve got a lot coming up with my own wedding that I need to be healthy for.