Dad & I made the trek to see my Lyme-Literate Naturopathic Doctor (LLND) on Tuesday. We both liked the fact that she explained things clearly, didn't beat around the bush, and didn't sugar-coat anything but wasn't really grim either.
When diagnosing Lyme she looks at a variety of factors:
~ history of exposure - between our dogs having had ticks while I was growing up, a variety of bites from mosquitoes and unknown insects throughout my years, and spending the last nearly 18 years living in the sticks the risk of exposure is pretty high.
~ antibodies - this is where the blood work comes into play. According to the blood work done in July, I've been exposed to Lyme at some point in my life.
~ symptoms - I have MANY and all indications show that it has crossed the blood-brain barrier and is now in my nervous system. Which isn't news to me.
She reviewed the vitamins, herbs, supplements, etc. that I've been taking and made recommendations on what I should continue taking and what I should add. There were a couple of them that she said I didn't really need to continue taking.
She also provided me with a G.I. Smoothie recipe which I'm to drink 1-2 times a day. The goal is to calm my gut issues so that a) I'm better able to absorb nutrients and b) treatment won't be as rough on the stomach. When I tried it yesterday it was horrible. I changed a couple of things today and it's now tolerable. I can't say that I really look forward to it yet, but we'll see. It seems to be bringing back my appetite except that there still isn't anything that sounds really tasty. Except ribs. But ribs always sound good to me.
She offered a couple of initial treatment options. One option is antibiotics in the herbal form. I use the term antibiotics fairly loosely because I've heard anti-, micro-, and macro- throughout this entire learning process and I honestly don't remember which terms she specifically used during the appointment. The other option is an antibiotic injection that is done twice a week. This particular drug is in the family of one I'm allergic to but because the reaction is gut rejection she believes it's fairly safe to take as an injection. The first dose will be done her office so if her belief is wrong, I'll be in the presence of someone who can begin immediate treatment.
The injections are painful both during and for about a day or so after. She's of the opinion that I've had pain for so long that this kind of pain isn't going to deter me the way it could some patients. I tend to be very cautious about drugs but in this particular case I'm comfortable trying. My folks will be at this first appointment and will be trained on how to do it properly. From what I've seen on YouTube, this goes in the upper/outer hip so it isn't something I can do myself very easily. Once they've learned and demonstrated how to do this safely, we'll be able to do this at home. This round will be twice a week for three months. After that we'll re-evaluate. I also have the option to discontinue this course of treatment and try something else should I decide that I'm really not comfortable with it.
Given the symptoms, the length of time I've been experiencing them, and the severity of them, her prognosis is 1-2 years of aggressive treatment. Her hope is that I'll regain some of my 'normal' lifestyle but cautioned us that I may never be 100% again. Before my dear loved-ones shout an expletetive at that thought, please keep in mind that all of this is happening for the good of God and He does have a plan for me and you in all of this. We just don't know what it is yet.
It has been about 10 months since Lyme was first suspected as the culprit in all of my health issues. In that time, I've "met" several other "Lymies" - some of whom have just been diagnosed. I'm amazed by the number of people who are suffering from some unknown disease that eventually turns out to be Lyme. I'm astounded by the sheer courage and mental strength I've seen among those who are fighting this disease. I'm amazed at how there are those in the medical, insurance and government communities who insist that we're all just crazy. Seriously, I wouldn't wish this life on my worst enemy.
The next few weeks will be pretty big in some ways and pretty boring in many ways.
I'm going to begin taking an amino acid that will hopefully help calm my nervous system so things that I can once again do some things that I used to take for granted like talking on the phone. That's a wait and see deal but it's something I'm very hopeful about.
We return to LLND in just under 2 weeks to learn how to safely administer the antibiotic. At that time she will also test for co-infections. Most people have these co-infections and never realize it. They only rear their ugly heads when one's immune system plate is over-loaded. She treats with the goal of minimal herxing, too.
Then in another 2 weeks we go back to LLND to check-in, get the results of the previous visit's blood work, and ??
In the meantime, I've got an email out to the folks at Under Our Skin and am rounding up a crew to host a community screening of the documentary in efforts to promote awareness. I'm not sure what the timeline usually is for something like this but it gives me something to do. Well, something productive to do.
I began reading the most recent book by one of my favorite authors. This book is one of several of her series so the characters are all familiar, as is the general story-line. I'm still struggling with comprehension (I notice I have an especially hard time when I come across the occasional error that slipped by the editors) but I enjoy her books so much that I'm not really willing to put it down and wait for the day when I can read once again. I'm also too stubborn to do that because that means it's one more thing Lyme has taken from me.
This feels like a rather random update but random and boring seem to be the norm for me these days. I'm a little freaked out and hopeful all at the same time.
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