It’s been a while since I have updated here and it has also been a few really rough weeks. But as always, I have good news to share so I am back.
I was expecting setbacks, I was told you get worse before you get better, I was told it would be a roller coaster ride. What I did not expect at this point in my recovery to slip further and further back in my recovery to the point where I questioned if it was working at all. The clinic kept calling and I just didn’t feel up to talking about, as did many others who wanted to help. I just wanted to push through this phase and get to the other side. It is so hard to know what is normal and what I should have sought some help for.
It was sorted out in a consultation with my NY doc. She explained a few things to me, some of which is really great news.
First: She explained that I am showing that I have beaten most of the Bartonella strain of Lyme. The symptoms I am battling with now are mostly the Babesia strain which is the one they call “the bastards”.
Two: She is also incredibly impressed with my progress. I am way ahead of where I would expect to be with other protocols and she feels the treatments I am doing and have done at the FAR clinic were clearly the right choice for me.
Three: The Babesia strain feeds on iron. I have eliminated all the other non-essential items from my diet that support lyme, such as sugar, so now it feeding on my iron. Hence, my extreme fatigue. The kicker in is that I cannot take iron supplements because that will only strengthen the bacteria. So it’s just a matter of fighting the bacteria until it’s gone and fix the iron issue after. It helps just understanding that.
Four: Since I am still struggling with neurological symptoms I am going to try a new med after I finish the next six weeks of treatments that the doc feels will really kick those on their ass. That is very encouraging to me. Not recovering those cognitive abilities really wears on your worry. It is motivating to know we have something to keep trying.
Five: Even after understanding the iron issue, I kept getting sicker so the NY doc suggested that because my progress is going so well, maybe I am not getting rid of the bacteria as fast as I am killing it. It was an interesting theory and worth a try. She upped some of my dosages and added a few to flush the dead bacteria out and bingo! Within 24 hours, I was already seeing a marked improvement. It was a turnaround point I had been waiting for.
As much as I still don’t have a medical doctor in Canada to help me, I have incredible medical resources that are all willing to work together and support one another’s efforts to help me get better. Everyone has built on the others treatments and all have supported the efforts I am making through the different experts; Research Clinic in Utah, Lyme Doctor in NY and Naturopathic Lyme expert in Ottawa. Funny enough, all professionals that I have to pay for. The only help I CAN’T get is from the system I already pay into, the Canadian Medical system. But that’s really okay, I am getting help and support like nothing I have ever experienced before… it’s worth every penny.
Oh and to top off this little rant, my short term benefits go through Service Canada’s employment insurance benefits but they think they can only cover a week out of country for medical reasons – not my full time in Utah. For so many reasons I live in a great country but when it comes to this, they suck! But I do have to commend the staff person that spent an hour on the phone with me trying to build a case. Although my claim was not supposed to have a two week waiting period, after two months, I have still not been approved. He was really trying hard to understand Lyme and the challenges that surround it. Not many employees would have taken the time or been so helpful. It was very refreshing and reminds me that a little compassion and patience can make a huge difference. But as he mentioned there are still rules he has to follow… There are just some battles not worth fighting.
Speaking of battles, after my follow up emails that apparently got lost in the Director’s spam (at my home medical clinic) he asked that we talk by phone. There were several exchanges with dates and times and the final confirmation never happened, nor the phone call. Maybe that email got lost in his spam again, but at that point, I got really sick and didn’t have the fight in me anymore. I was just asking to see a different permanent doctor at the clinic instead of seeing the one that did not support me and have two different interim ones until my doctor returns from leave. Seemed like a simple request and only required a yes or no answer. But it just got more difficult than it needed to be. Easier to pay for the help and save my energy for healing, than to waste it on trying to convince someone to help me heal.
I can understand how chronic Lyme is so challenging. I am incorporating information, treatment and trials from every angle I can find them. And it is taking all of them to make this process work. It’s true that you can never give up, you have to keep searching, asking, and working to get where you want to be. Every corner you look, every person you talk to, every article you read is just a little bit more that will get you in the right direction. The only thing you really have to do is Never Give Up.
So in short, I am finally back on the right track and have decided it’s taking a community of friends and family to help me through and a continent of professionals – but it’s happening. There truly is a blessing in every burden. Its amazing to me how much impact the little things have. A note, text, email, picture, laugh, quote, hello, or kind words can literally make the biggest impact on someone suffering. I think many times we think about these things and feel silly or let the idea pass. Don’t. As each day goes by, if you have a thought of doing a small kind gesture for someone. Do it. Don’t let the thought pass. It can change the world for that person and you may never even know it. I have received what might be perceived as the most simple gesture to the giver, but it often comes at the most opportune time.
I know there is a lot of suffering going on in the news and the world. I find it hard to follow right now. I know it’s very sad and painful for many. But I just can’t let it undermine the most amazing gestures of humanity I have experienced over the last few months. This world is also filled with kind, caring and truly loving people. I think we just need to have more confidence to share that part of ourselves and know it makes a difference. We may not be able to override the pain the world feels but if we can override one moment of pain for someone close, we do change their world. I promise you it’s true.
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