While going through Lyme treatments, I was told of a man that was always very vague when he provided updates on his recovery at home. I now understand why, after I had a phone check in early this week with staff at the clinic where I reported many, many days of feeling great. My energy may have been low and I had to nap a lot but I was pretty sure that it was because I was doing much more than I had been able to in months. However, shortly after reporting this good news, I was bedridden with a couple of the lowest days in my recovery. It was all I could do to try to do my treatments; many of which were not able to be completed.
Regardless of how many times the clinic warned me this would happen, it still caught me by surprise. I think I was most shocked by how low it got. I think I assumed as I got better, the bad days would be in proportion. I was wrong. I regretted providing such a great report and wondered what the real cause was. I figure it is one of three things:
Setback – I may have tried to do too much when I was feeling better. Trust me, I was being gentle with myself and tried to add little bits at a time. But it is possible I am still underestimating how little I can do.
Bad days – maybe the bad days can be this bad? It is possible that as your good days improve, your bad days can still get as low as they always have. It’s a cycle your body has to go through; building its immune system, fighting the Lyme, then dealing with the die-off and repeat. I suppose your body should never feel good when dealing with the die-off and will always be at a low when it is doing so. It has to be a good thing that your body never does well with that.
Herxes – I have some amazing people in my life that went to a lot of trouble to purchase and have shipped one of the machines from the FAR Clinic. Of course, it happens to be the one I disliked the most lol. But they were told it was the one that would speed up my recovery the most. And as it turns out sometimes our bodies have herxes which are reactions to the die off and can be managed by how hard we push our recovery, how intensely we increase the supplements and how well we take care of ourselves through reovery. So it is possible that this machine is so effective that after two days of using it, it boosted my recovery that the intensity of the die-off was more than I was ready for.
No matter what the reasoning, they are all good signs. It just was a shock when my motivation was at an all-time high with how my recovery was going. It reminded me of symptoms, I really had forgotten and gave me a little slap in the face, that I cannot get carried away with feeling good, I am still recovering. This is hard to remember when you feel better than you have in years. And if any of this sounds like I am feeling bad for myself, I am most definitely not. I am mostly recording this for anyone else who may go through this. Everyone tried to prepare me for the lows, and yet, it really got me down in more ways than one.
I also know I feel lucky, because in the short time I have been dealing with this, the people that I have met that have dealt with Lyme in many different ways, are not always seeing success as we imagine they should. Some have given up on the process or wanted to. Others have given the process all they had but still struggle with many symptoms to this day. And some who thought they were healed found the returning symptoms too much to bare and have resorted to many drastic solutions to resolve. I am extremely saddened by all of this. These are people who have helped or motivated me.
I believe there are mild symptoms that may remain for me and I am okay with that. I haven’t seen much change in them since the beginning. So, I have accepted they may stay, but still, work to alleviate.
– Mild paralysis – on my left side. It only affects certain movements with left arm and I think possibly my hip flexor. I can still do most things. You just may not want me to carry your grandmother’s fine china with my left hand. lol
– Anxiety – hard to associate it with much. I think could be related to when my body tires. I know it is most prevalent when I have chest tightness and trouble breathing. Makes sense that it is mostly physiological. It seems to have lessened as my chest/heart symptoms have improved. These symptoms come and go, so it is hard to know if they are working their way out or if they may always present themselves now and then.
– Cognition – I know this is related to when my body tires. So I think I still have more improving to do as my energy improves. But I assume I will always need to manage it if I overdue things, get stressed or tired, in the future. It just comes in the form of not being able to absorb or compute certain things going on around me or the short term memory thing. My memory has come a long way. It just fails me now and then. I think I have to assume it will always be bad and then it can be a nice surprise when it isn’t.
What comforts me most is that the route I decided to take at the FAR clinic is far from over. I still have two more months of improving to do with home treatments. I also have the ability to do what many patients of the clinic are doing and that is to continue the treatments at regular intervals such as, once a week (after the two months). It is a small sacrifice to make to ensure that the headway I have gained can be maintained. But certainty is not something any Lyme patients have these days. Really every process is a trial. No treatment has proven to be 100%. And patients using many different remedies who thought they were cured, are finding out otherwise.
I believe that the FAR clinic was most definitely the best option for me and will give me the best life moving forward. But the clinic is not for everyone, nor is it possible for everyone. I believe this is a sad realization for Lyme patients, especially when it is something that could have easily been cured with early diagnosis. I don’t see any movement governmentally, past the fact that “they are looking into it”. It’s taking too long and politics are overruling. The numbers are increasing by the day and that is with multiple misdiagnosis still happening.
Two things need to happen and they need to happen yesterday:
1) The medical profession needs to listen to the experts on Lyme because there are many consistencies that will help with diagnosis. The experts are the New York Dr., Clinics doing research like the FAR clinic and the Lyme patients. No one is collecting and collaborating with these people enough to look at the 50+ symptoms that can show Lyme just in their sheer number or the very simple consistencies that are found; body temp, low O2 with mild exertion, movement from one major body system to another, the fail and recovery cycle, pain locations…and the list goes on. Experts in the field have described these to me to a perfect degree of what I experienced. Why is this information not be shared immediately with medical professionals everywhere???
2) Immediate treatment is being postponed or not being made available to people even showing a bullseye rash after a bite or only those showing the rash. I never had a rash, or at least that I noticed. No one feels the right to demand treatment, but we need to start.
– The tick can be tested if there are concerns. But from the tests that were done in the four large parks that I manage: all showed many different strains of Lyme and a multitude of infected ticks. Those parks are hundreds of kilometres apart. Let’s just assume if it’s a tick -it’s infected!
– I have never been a fan of antibiotics, but is a short course of antibiotics that may prove unnecessary not a far lesser risk than finding out three years down the road that it’s too late or tens of thousands to fix?
– Doctors in Ontario are being coincidentally investigated and charged with something unrelated after treating patients for Lyme. So much so they have stopped taking Lyme patients. Stop it, stop the madness. These doctors are trying to stop an epidemic. What the hell is wrong with our system that they are investigating and charging good professionals because they are putting their patient’s health first. I feel mad even stating this, but this is what is happening. If you don’t believe me, you should know that I still do not have a medical doctor and my efforts still continue with my clinic.
– There are naturpoathic clinics that can help early onset Lyme. If people are uncomfortable with antibiotics then there are more natural paths to take, they just need the assistance of the medical profession to diagnose. Because if they go through all the specialists and tests like I did before pursuing other options, it can be too late to effectively treat this way. We need medical professionals to look for Lyme first. It can’t hurt.
– Screw the blood tests. They don’t prove anything one way or the other. I was tested three times. One test finally showed the presence of Lyme but not at a degree high enough to be considered “positive” for Lyme. The experts now know that the tests are only able to detect 1-3 (Canada is 1) of 10x that in possible lyme strains. They also know that the tests are proving ineffective. The longer a patient has Lyme the less likely the test is going to pick it up because of how it develops. Many States have decided the only way to diagnose Lyme is by clinical diagnosis, not a blood test. People need to know this.
I am no medical expert but these seem like simple steps that can be happening NOW, while they are “looking into it”. Have politics overtaken us so much that they rule before the wellbeing of human kind? I guess so because there are believed to be hundreds of thousands going through a similar struggle as me and I see absolutely nothing happening to help them. I see simple, harmless solutions not available to North Americans because they are not FDA approved? But they are harmless. Patients need to be able to make informed decisions for themselves, without putting another doctor’s license on the line. In many cases, our only option is a mentally and physically crippling situation, if not death. How many other options can be worse than that? Even when begging a Lyme patient is not able to get treatment to avoid that in a very progressive country. What the hell is wrong with us.
I promised to write about my experience but swore I would not get political. I guess that is not the case anymore. This is no longer about me. It is estimated in two years, 80% of our population will be infected with Lyme or develop into Chronic Lyme. This is about our friends and family…our children. This is a fight that belongs to all of us. I don’t want to see the same games as Cancer happen here. But unlike Cancer the solutions are simple. It will take the lawmakers to quit worrying about saving their own ass and worry about saving the ass of a Lyme patient. I have no idea what it takes for that to happen. Once again, I feel helpless.