Since I wrote a week and a half ago, I have increased my Cowden drops from 28 to 29 drops. And then again, on the full moon, to 30. I have read that a full moon really brings out the spirochetes and that it is hence a great time to blast them with antimicrobials. My ssymptoms flared up with the appearance of the full moon anyhow - so, with fear in my heart, I went for it.
I wasn't actually that scared. It was more like dread. After two and a half years of this, I don't like big herxes. The first two years, I herxed almost non-stop. I think it was necessary - I was that sick. And I needed to blast the bugs to make progress. Now, I continue to make progress, but I've slowed down the blasting rate. I could be at this, treating this disease, for several more years to come. (And I don't want to think about it if it will actually be for the rest of my life, so I don't - one day at a time!). And if I can help it, I don't want to be so super sick from the herxing on top of everything the lyme and bartonella are already throwing at me.
So increasing to 30 drops that quickly did end up making me herx. Badly enough that I had tongue and throat swelling by noon for the last few days, difficulty speaking clearly, massive brain fog, pain, that feeling of bugs crawling all over your skin, exhaustion, irritability, headaches. And hives. It's summer and my arms and face do not look pretty right now.
But this is consistently my toughest rotation - the houttunyia and enula - and now I'm finally at the desired 30 drop dosage. I made it! I'll go for another week or so and then switch to my next rotation. Samento and Banderol on the horizon. I'm excited. I'll be vacationing in August (staycationing is more like it!) and Samento and Banderol are the meds I've been on the longest. And that I feel my best on. Hooray!
Looking forward to it.
Friday, July 26, 2013
Wednesday, July 17, 2013
fabulous biking, no progress on the drops
Here I am almost a week after my last post and I have not been able to increase my Cowden antimicrobial rotation drops at all. I'm still at 28 drops!
Symptoms seem a bit stronger than earlier too. But I'm not sure. How can you be sure when there are so many symptoms in your body and they are so strong, yet so subtle. I say 'subtle' because I am convinced I ignore most of what is going on symptom-wise most of the time. This isn't to say that I don't take care of my body (+ mind + spirit!) in the absolute best way I know how on any given day. But if I focused on the symptoms, I have little doubt that I would go out of my mind with frustration and suffering.
On second thought, I may have actually already gone out of my mind with frustration and suffering even without focusing on them. HA!
Anyhow, is a week at 28 drops okay???? Am I doing this wrong????? When will I feel well enough, confident enough, to increase again? How many freaking weeks will it take me to get to 30 drops???? I can't know. So I just keep moving forward (or not, HA again!) day by day. We have been on short little bike rides every day or two. Still 100% in love with it. I can only ride on smooth pathways - bumpy roads are agonizing. But we live near a gorgeous bike path next to a river. So, how about that awesomeness??!! Lucky. But what I mean to say when I talk about the bike is that maybe it's not the 28 drops, but rather the new activity that is keeping me at this level of meds. Maybe it's a combo. Maybe the biking has nothing to do with it. Again, who knows?
Grateful for the tandem bike loan. Grateful for the bike path. Grateful I have a husband who is willing to do all the work on the bike - essentially towing me along until someday I have regained the endurance, strength, balance and judgement to be able to ride on my own again. Grateful I can bike alongside the kids for the first time in half of their lives. Grateful that it doesn't matter if I ever get that well again - I can still bike!
And hoping that these days of 28 drops on Houttunyia and Enula are doing great, great things in my body.
Symptoms seem a bit stronger than earlier too. But I'm not sure. How can you be sure when there are so many symptoms in your body and they are so strong, yet so subtle. I say 'subtle' because I am convinced I ignore most of what is going on symptom-wise most of the time. This isn't to say that I don't take care of my body (+ mind + spirit!) in the absolute best way I know how on any given day. But if I focused on the symptoms, I have little doubt that I would go out of my mind with frustration and suffering.
On second thought, I may have actually already gone out of my mind with frustration and suffering even without focusing on them. HA!
Anyhow, is a week at 28 drops okay???? Am I doing this wrong????? When will I feel well enough, confident enough, to increase again? How many freaking weeks will it take me to get to 30 drops???? I can't know. So I just keep moving forward (or not, HA again!) day by day. We have been on short little bike rides every day or two. Still 100% in love with it. I can only ride on smooth pathways - bumpy roads are agonizing. But we live near a gorgeous bike path next to a river. So, how about that awesomeness??!! Lucky. But what I mean to say when I talk about the bike is that maybe it's not the 28 drops, but rather the new activity that is keeping me at this level of meds. Maybe it's a combo. Maybe the biking has nothing to do with it. Again, who knows?
Grateful for the tandem bike loan. Grateful for the bike path. Grateful I have a husband who is willing to do all the work on the bike - essentially towing me along until someday I have regained the endurance, strength, balance and judgement to be able to ride on my own again. Grateful I can bike alongside the kids for the first time in half of their lives. Grateful that it doesn't matter if I ever get that well again - I can still bike!
And hoping that these days of 28 drops on Houttunyia and Enula are doing great, great things in my body.
Thursday, July 11, 2013
A little bit of biking!
Here I am - nearly a week since my last post, and I have just increased my Houttunyia and Enula dosages to 28 drops today. This means it took me a full week to go from 26 to 28 drops. It's slow. But I'm living a little bit. :)
The kids were at the Grandparent's place for three days last weekend. That meant hubbie and I had some free time together - wooeee, baby! I love my kids, but oh do I also love the freedom of not having that responsibility once in awhile too.
So, we packed in the frugal, uber-relaxed fun. What do other lymies do for fun? We are on a super tight budget, so spending in any big way is out - no shopping sprees, expensive dinners, movies and popcorn, hotel mini-vacations, spa days, etc. And of course my fatigue and brain fog are huge still too (much better, but huge compared to a healthy person). So we can't hike or run or zip line or anything like that either.
We ended up going to the beach for a wee walk in the water - just up to our ankles. Heaven feeling the sand under my feet! Water is super grounding for me too. Then we sat on the beach for a long time. Chatting and chilling. We did actually go to dinner too. But we tend to go to an organic, vegetarian place where you pay by weight. So I get a LOT of salads. Which I enjoy because I rarely have the energy to make these at home - a real treat. And the food is actually safe for me to eat at this place. We also went for a little walk around a downtown neighbourhood (my husband drove us there in the car). We both love the architecture of the old houses as well as the lush, full gardens and mature trees in these types of neighbourhoods. Inspiring. Tried to watch a movie one evening at home but we were too tired. The evening before we went to a movie out - a real movie at the cinema! This isn't in the budget, but we ask for movie gift certificates for birthdays and Christmas gifts. A total mini-break from reality.
So these are our date night ideas... walks, a cheap and healthy bit of food out, nature that is close-by, a movie treat. Sometimes we people watch too. Sit on a bench in a busy area and just hang out. Pretty fabulous considering I spent over a year primarily in bed and in pain, but I still wouldn't mind more ideas.
(And of course all of this fun - with ample resting in between mind you! - resulted in the worst symptoms I have seen in awhile. Major word slurring, brain fog, more body pain, etc. But I didn't care!)
I need to get to the coolest part of this post though! We ended up at an end-of-school party for the kids near the end of June. The host family happened to be a car-free family with a bunch of bikes. Hubbie and I had previously played around with the idea of getting a tandem bike - so I could sit at the back, barely peddle, and not have to balance or steer. I miss biking with my family! We searched for a bit on kijiji, but quickly realized that tandem bikes are pricey - way out of our budget. And we didn't even know if I could actually do it. Well, this generous family were going out of town on vacation and have just lent us a tandem bike for a few weeks! We went for our first bike ride two nights ago. The first time I have biked in literally years.
I adored it. Do you remember how it feels to bike? I don't even remember what it feels like to walk without pain - never mind run, or swim, or jump... We went for a 20 minute ride. It was scary and a little painful, but mostly massively awesome. I could cry with the joy. It's hard to absorb, it's that great.
Right now, for the record, I can walk for about 20 minutes on a usual, 'good' day. And I'm sore, and sometimes feel like my ankles will give out, but I do it. Riding in a car as a passenger - with pillows beneath and behind me - has the pain start at about 40 minutes into the drive. At an hour it gets bad. If the road is bumpy (Ontario roads!) I end up in tears from the pain.
So being able to bike - just for a little bit - feels like a miracle. Gratitude for little miracles!
The kids were at the Grandparent's place for three days last weekend. That meant hubbie and I had some free time together - wooeee, baby! I love my kids, but oh do I also love the freedom of not having that responsibility once in awhile too.
So, we packed in the frugal, uber-relaxed fun. What do other lymies do for fun? We are on a super tight budget, so spending in any big way is out - no shopping sprees, expensive dinners, movies and popcorn, hotel mini-vacations, spa days, etc. And of course my fatigue and brain fog are huge still too (much better, but huge compared to a healthy person). So we can't hike or run or zip line or anything like that either.
We ended up going to the beach for a wee walk in the water - just up to our ankles. Heaven feeling the sand under my feet! Water is super grounding for me too. Then we sat on the beach for a long time. Chatting and chilling. We did actually go to dinner too. But we tend to go to an organic, vegetarian place where you pay by weight. So I get a LOT of salads. Which I enjoy because I rarely have the energy to make these at home - a real treat. And the food is actually safe for me to eat at this place. We also went for a little walk around a downtown neighbourhood (my husband drove us there in the car). We both love the architecture of the old houses as well as the lush, full gardens and mature trees in these types of neighbourhoods. Inspiring. Tried to watch a movie one evening at home but we were too tired. The evening before we went to a movie out - a real movie at the cinema! This isn't in the budget, but we ask for movie gift certificates for birthdays and Christmas gifts. A total mini-break from reality.
So these are our date night ideas... walks, a cheap and healthy bit of food out, nature that is close-by, a movie treat. Sometimes we people watch too. Sit on a bench in a busy area and just hang out. Pretty fabulous considering I spent over a year primarily in bed and in pain, but I still wouldn't mind more ideas.
(And of course all of this fun - with ample resting in between mind you! - resulted in the worst symptoms I have seen in awhile. Major word slurring, brain fog, more body pain, etc. But I didn't care!)
I need to get to the coolest part of this post though! We ended up at an end-of-school party for the kids near the end of June. The host family happened to be a car-free family with a bunch of bikes. Hubbie and I had previously played around with the idea of getting a tandem bike - so I could sit at the back, barely peddle, and not have to balance or steer. I miss biking with my family! We searched for a bit on kijiji, but quickly realized that tandem bikes are pricey - way out of our budget. And we didn't even know if I could actually do it. Well, this generous family were going out of town on vacation and have just lent us a tandem bike for a few weeks! We went for our first bike ride two nights ago. The first time I have biked in literally years.
I adored it. Do you remember how it feels to bike? I don't even remember what it feels like to walk without pain - never mind run, or swim, or jump... We went for a 20 minute ride. It was scary and a little painful, but mostly massively awesome. I could cry with the joy. It's hard to absorb, it's that great.
Right now, for the record, I can walk for about 20 minutes on a usual, 'good' day. And I'm sore, and sometimes feel like my ankles will give out, but I do it. Riding in a car as a passenger - with pillows beneath and behind me - has the pain start at about 40 minutes into the drive. At an hour it gets bad. If the road is bumpy (Ontario roads!) I end up in tears from the pain.
So being able to bike - just for a little bit - feels like a miracle. Gratitude for little miracles!
Friday, July 5, 2013
Summer heat and the best Houttunyia/Enula rotation ever
It's been warm warm weather the last several days and I am in love with it. Temps have been close to 30 degrees with a humidex closer to 40. It feels so good to my body. I'm not bundled up in a tonne of layers all the time - and still freezing.
I'm also doing fabulously well on this Cowden rotation! As I mentioned in my last post, the Houttunyia and Enula are usually my roughest rotation. Not usually actually - always. I've just hit 26 drops and am feeling pretty decent. Relatively speaking of course.
The agitation and wanting to hyperventilate feelings seem to have passed for the most part too. I don't feel completely settled and grounded, but it's way better. I can nap more easily again. My energy is such that I do have to sit and lie down for brief periods in the late afternoons and evenings, but not so bad that I'm in bed from dinner onwards. I don't even want to be.
It's blowing-my-mind incredible. :)
So there is my update - I'm doing the best I have done in years and the hot weather is probably helping too. My only concern centers around thoughts that perhaps I am going too slow on this rotation - taking too much time to ramp up the dosage. I need to get to 30 drops and I'm already at 24 days. If I followed the Protocol directions perfectly I would already be on my next antimicrobial rotation.
But that's what I have done for over 2 years. And herxed like crazy the whole time. My LLMD says I can try this as long as I still keep getting better. I don't know how long it will take to know. Willing to give it a few months to experiment though.
I'm also doing fabulously well on this Cowden rotation! As I mentioned in my last post, the Houttunyia and Enula are usually my roughest rotation. Not usually actually - always. I've just hit 26 drops and am feeling pretty decent. Relatively speaking of course.
The agitation and wanting to hyperventilate feelings seem to have passed for the most part too. I don't feel completely settled and grounded, but it's way better. I can nap more easily again. My energy is such that I do have to sit and lie down for brief periods in the late afternoons and evenings, but not so bad that I'm in bed from dinner onwards. I don't even want to be.
It's blowing-my-mind incredible. :)
So there is my update - I'm doing the best I have done in years and the hot weather is probably helping too. My only concern centers around thoughts that perhaps I am going too slow on this rotation - taking too much time to ramp up the dosage. I need to get to 30 drops and I'm already at 24 days. If I followed the Protocol directions perfectly I would already be on my next antimicrobial rotation.
But that's what I have done for over 2 years. And herxed like crazy the whole time. My LLMD says I can try this as long as I still keep getting better. I don't know how long it will take to know. Willing to give it a few months to experiment though.
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