It’s been quite a while since I’ve written anything on here, other than sharing information about the Holiday Bazaar, Lyme support groups etc. I feel like everyone just knows what’s going on because so many of my friends and family are on Facebook, where they hear on a daily basis what’s going on. I figured it’s time for an update on my journey, my treatment and the rough spots I’ve gone through over the past few months, which will also explain why I haven’t been writing as much, or as active in things as I’d like to be.
I am blessed with the ability to see an amazing LLMD. It’s been 13 months with him, and with each month my confidence in his abilities increases. It seems time after time when something goes “wrong”, he has an idea what it is, puts a plan in action, and each time he’s been right. Here’s a basic idea of the past few months.
I’ve been on IV antibiotics now for 10 months. While improvement was slow, it was definitely helping with a lot of the neurological problems I began to experience last year (including loss of memory of anything before Christmas). Those who know me also know I do not like Christmas, I think some people think this might be a good excuse for me to just block out the holidays. I wish it were that simple! But it was a real shock to me when I suddenly didn’t remember anything for the weeks leading up to Christmas last year. This comes and goes. Some days I remember things, others I don’t. I don’t put much faith in it at the moment, as I believe when I’m better it will all be back, and I won’t have to worry about it. But that was the beginning of a bunch of neuro issues that landed me with a PICC line in my arm and beginning IV antibiotics.
It is generally accepted that Lyme bacteria take 3 different forms. The 3rd and most resistant form is the cyst form. ”Cyst busting” is the term used by many of us when we begin any form of treatment to attack and break down the bacterial cysts. In this form the bacteria remains protected, and antibiotics are of no help because of the protection the cyst provides the bacteria.
My first round of pulsing a cyst buster was not a good one. (Pulsing basically means being on a medicine for so long, then off for so long, then back on it. With the cyst buster I did 2 weeks on, then 2 weeks off.) I had a die off reaction as the cysts broke up that became quite serious. Until this point I didn’t realize a herx reaction could be not only dangerous, but lethal if strong enough. This threw me off course, and I spent a couple of weeks recovering from such a brutal herx reaction. Our plan was to continue cyst busting after I had recovered, but at a much lower dose. The fact I was reacting let the Dr know that there was still a lot of bacteria left in my body that needed to be killed off.
But I suddenly began getting sicker before being able to start another round of cyst busting, it was my old friend Bartonella again. (Ashley has a posts on each of the co-infections which she will be sharing in the next few days for more info on each co-infection.) I have 2 co-infections that I received along with Lyme disease, Bartonella and Babesia. Often the co-infections are worse than the actual Lyme, and treating Lyme is impossible if you’re not addressing the co-infections that often go along with Lyme. It was clear from my symptoms it was Bartonella. Because of the medications I was already one, we went for an herbal treatment instead of antibiotic, and it worked wonders for me. Within 12 hours my severe Bartonella symptoms started to subside, and as I continue to take the medication I continue to be fine without any more complications from Bartonella. Problem solved, back to the plan.
Back to cyst busting we went, only this time at a much lower dose. I still reacted strongly…much too strong for the low doses of medication. We did two rounds of pulsing until during an exam the Dr noticed my other co-infection, Babesia, was rearing it’s ugly head again. He put me on a 7 day course of anti-malarial medication (Babesia is similar to Malaria), and within 3 days I was sicker than I had been since the beginning of all of this. Each day I got worse. Babesia is the least favorite of my infections. The symptoms are brutal, headaches, inability to get enough air, nausea, vomiting, heat flashes and cold sweats, all the things that make it impossible to function at any level. With only 7 days of medication I was sure I’d start to feel better at the end, but instead I just kept going downhill. It was clear I was having a die off of the Babesia bacteria, but my body was not handling it well at all, in fact the neurotoxins created in my body were making me dangerously sick.
It took 8 weeks for my body to recover from that 7 day course of medication. During that time we reduced my IV antibiotics to 4 days a week instead of 7, while my body worked towards returning to a baseline of where I was before things went downhill. At this point I had my next appt with my MD, and he came to the conclusion my immune system has become hyperactive. I guess that’s progress in a way since it wasn’t long ago I had no immune system, or one that wasn’t doing it’s job. Now it has begun to do what it is supposed to do, but it’s doing it in such an exaggerated way that week after week I just feel worse and worse.
As always the Dr had a plan. Because it’s clear I have an issue with the Babesia, I was put on a natural remedy that is showing great promise for many other patients with Babesia. A normal dose of 15 drops was too much for me to handle, our goal was to get me to 3 drops at a time. I started with 2 and within 2 hours was full blown sick with all of the Babesia problems again. The nausea was back, the hot flashes, the headaches. But within a few days my body adjusted and I’m not up to 3 drops at a time without having a reaction. Taking it slow, and at low doses is giving my immune system to rest a little and hopefully get back in whack.
For now I’m doing the IV just 2 days a week. The antibiotics also put the immune system to work, it’s not just the bacteria. So pulsing the IV meds and giving my body 5 days a week without the IV is another attempt at giving my immune system a break.
It’s been a week now since the new plan went into motion, and with a very detailed symptom journal I can say I’m almost back to baseline, which is where I was 3 months ago when I was still seeing improvement. But it’s frustrating, because every step of the last 3 months has just slowed down my treatment, made the light at the end of the tunnel seem so much further away. I worry if my immune system is going to respond like this from here on out, how will I treat these diseases without being so sick I can’t ever leave bed?
The past 3 months have taken a huge toll on my body and my mind. I look at myself in the mirror and I look like I’ve aged 10 years. I see a ghost of the person I used to be. There were many times in the past 3 months I thought I might die. There were many times in the past 3 months I wished I would die.
But the fight goes on. Frustration is part of the process, and I can’t let myself focus on the slowdown of my treatment, but just on putting everything I can into what my body needs right now in order to heal. Patience is not a strong point of mine, and 18 months into treatment is not making being patient any easier. But I can’t get there, without being here.
My involvement in friends, family, Lyme awareness, this website, the Lymenaide team…all of it has suffered dramatically over the past 3 months because of the lows I’ve hit. My good days now are the equivalent of a bad day a few months ago. But I keep reminding myself I have to get worse before I get better. Boy how I appreciate any times I feel any relief from my symptoms, because of how much I’ve suffered in addition to my regular issues over these past few months. You can’t truly appreciate the sweet unless you’ve had the sour. I’m thankful all of this will give me the opportunity in the future to really appreciate the good.
So there you have it, a brief (but long winded) synopsis of the past 3 months. An explanation why I’ve been getting worse instead of better, and also as to why I haven’t been as active as I want to be, or as diligent with this website.
I still see that light at the end of the tunnel. Some days it’s bright, others it’s a pinpoint of light I wonder if I’ll ever reach. But the light is always there, and I continue to reach and pull myself towards it. I WILL get through this. Each day I survive I’m amazed at what I can handle, and what I can put my body through. After 18 months of this, I’m more determined than ever to keep up the fight and reach the light at the end of the tunnel, and when I do I plan on embracing that light and never letting go.
To my Lyme friends struggling right now. I want you to know you are not alone. I am not alone. I have not been alone in all I’ve been through in these last 3 months. While friends and family are there to support, to have those who understand and are going through the same thing by your side makes all the difference in the world. Reach out to the Lyme community. There are thousands of us out there, all fighting the same fight, but at different points in our journey. But we’re working together to create a community of support. I’ve learned I have to rely on these people for hope, help, and happiness in this fight for my life. No matter how dark today is, remember there is always a tomorrow. You are not alone, use the wonderful network of Lyme patients that we have created. There is so much love in the Lyme community, it’s there for the taking.
I also want people who see me as a positive person, always laughing through my sickness, or turning negative into positive to know that’s not always the case. I have hit some real lows in the past few months. Some of you have seen the depths to which I have gone, many have not because I try not to bring negative energy to Facebook and other social media outlets. I am no different than any of you. I choose each day whether to let Lyme win, or whether to fight it. I choose each day whether to laugh, or to cry. Our symptoms may vary, the degree of our illness may vary, but we are all the same. We each lose ourselves to this disease throughout the journey, and at those times is when we most need to reach out. So each of you know, I struggle as much as the next person, I may try to laugh it off and turn it into positivity, but that doesn’t change the pure hell of what I go through. If you’re someone who says to me “no matter what you have a great attitude, I couldn’t keep that up because….”, then I want you to know you’re wrong. The choice is yours. We can’t control what happens beyond ourselves, but we can control ourselves. Please understand this is all part of the journey. I hate what has happened to me in the last 3 months, but it will only make me stronger. I choose to see the good that can come out of it, not the hours of torture I’ve endured. I invite all of you to make the decisions in your life…will things dictate how you react to things in life? Or will you dictate how you react to things in life? It’s up to you.