This week I have gratitude for myself. For the 'staying power' I somehow summon up to keep on keeping on in this grand old healing from chronic lyme disease journey.
I have gratitude for all the other people out there who are courageously keeping on in their own journeys too. People with chronic lyme, people with other chronic illnesses, people with entirely different issues that are challenging them beyond what they ever dreamed they would have to handle. Yet handle it we do. All inspirational. And I'll take all the inspiration I can get. :)
I've now hit 27 drops of the houttunyia/enula. Yippee. (Sarcasm, yes). And despite that I've been going at this for over a month, I've decided to keep going until I hit the 30 drops I was supposed to start the rotation with. (!) Hoping to achieve this in another week or so. Which makes me realize that I had better up the dosage to 28 drops this afternoon. (Sipping my 27 drop before-lunch concoction right now as I type...).
Oh joy, joy, joy.
So... it has really not been fun. Is it always this horrendous??!! (I think it probably is... and then I conveniently, or more likely lyme-brain-foggily, forget how bad it has been until I hit the same rotation again)
This rotation is not getting easier. I am not sleeping well. I get red faced and chills and generally gross feeling in the evenings. My head is foggy nearly all the time and it hurts too. My eyesight is worse. My eyes are more tired. Harder to read when I'm lying in bed. I'm having nightmares.
I'm taking the Cowden protocol's Zeolyte HP for heavy metal detox too - every third night - and that often is what puts me over the edge both symptom and nightmare-wise. The last dose I dreamt about being chased and slashed with a knife. Over and over again to all different parts of my body. I would wake up, realize I was dreaming, and fall back asleep and keep dreaming the same dream. Erg.
The light at the end of the tunnel here is that my next rotation is Samento and Banderol. Ooooo hooo hooo! If I have a chance of feeling good on any of the antimicrobials, Samento/Banderol are the ticket! AND... bonus of bonuses... it should coincide with the Christmas holidays. How nice would that be to have a chance at feeling a bit better while my kiddos and dear hub are off for the holidays.
Showing posts with label Cowden protocol. Show all posts
Showing posts with label Cowden protocol. Show all posts
Wednesday, November 27, 2013
Friday, July 26, 2013
maybe too fast, but I did it
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.
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.
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.
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.
Friday, June 14, 2013
getting better at balance with lyme
I haven't posted in a week because life has been so busy. What is it with kids and June? All the school's-almost-out activities and last minute To Do's. And everyone with a summer birthday cramming their party into June. Don't get me wrong. It's a fun month. But wow, we are ready to slow down. 2 weeks to go!
I ended up coming out of that last herx and doing really well last weekend. So well that I was out wandering around an outdoor street festival in our neighbourhood for 2 hours on Sunday with my fam. And then I walked home! At a normal pace! It's only a 20 minute walk, but I hobbled at a snail's pace when I attempted the same thing a year ago.
Bonus was that I didn't feel like going straight to bed when I got home! No spinning head, no aching body. Well, a tiny bit. But not enough that I was anywhere near the state where I could no longer handle standing or sitting upright. I actually made lunch for my family after sitting outside in the hammock to regroup. LOVE this.
I think this is evidence my 'go slow' idea with the Cowden drops is working. I have a doctor's appointment next week and will discuss it with her. I'd love to keep it up if it won't impede healing progress. Can you imagine a life of healing so much more bearable and, heaven forbid, fun along the way? I dare to dream.
This last week has been a bit up and down in terms of herxes. I've actually had an activity booked for every day. From a 2 hour tea to a track and field meet for my kid to a dog training session for my unruly pup. So nothing more than a couple of hours per day for the most part. And I'm still napping daily. I'm stronger and less fatigued and hence my activity level is up. I haven't figured out how to balance my body quite right though. Going in and out of herxing and I think maybe I don't need to...
Yesterday was terrible. I actually ran out of the Cowden drops for my current rotation (Cumanda and Mora). Poor planning! ACK! So I did an early 'in between day' where I am off the antimicrobial drops and only on the herbal detox drops. I usually look forward to and cherish these days as I feel so good on them - no herxing. Well, clearly I had messed up my balance as I had a lot of fatigue, tongue and throat swelling, headache, plus general malaise going on. My only conclusion is that it had to be the stress of the busy week.
Proof right there that this balancing act with lyme isn't easy. My friend likened it to walking a tightrope - the smallest thing can knock you right off.
Will keep practice getting better at it though - this is life right? Everyone, lymie or not, has to come to know their own bodies and spirits deeply so as to keep that delicate balance of enough rest, enough play, enough nourishment - all on a daily basis. Lyme just takes the whole deal up a notch - keeping us on our toes.
I ended up coming out of that last herx and doing really well last weekend. So well that I was out wandering around an outdoor street festival in our neighbourhood for 2 hours on Sunday with my fam. And then I walked home! At a normal pace! It's only a 20 minute walk, but I hobbled at a snail's pace when I attempted the same thing a year ago.
Bonus was that I didn't feel like going straight to bed when I got home! No spinning head, no aching body. Well, a tiny bit. But not enough that I was anywhere near the state where I could no longer handle standing or sitting upright. I actually made lunch for my family after sitting outside in the hammock to regroup. LOVE this.
I think this is evidence my 'go slow' idea with the Cowden drops is working. I have a doctor's appointment next week and will discuss it with her. I'd love to keep it up if it won't impede healing progress. Can you imagine a life of healing so much more bearable and, heaven forbid, fun along the way? I dare to dream.
This last week has been a bit up and down in terms of herxes. I've actually had an activity booked for every day. From a 2 hour tea to a track and field meet for my kid to a dog training session for my unruly pup. So nothing more than a couple of hours per day for the most part. And I'm still napping daily. I'm stronger and less fatigued and hence my activity level is up. I haven't figured out how to balance my body quite right though. Going in and out of herxing and I think maybe I don't need to...
Yesterday was terrible. I actually ran out of the Cowden drops for my current rotation (Cumanda and Mora). Poor planning! ACK! So I did an early 'in between day' where I am off the antimicrobial drops and only on the herbal detox drops. I usually look forward to and cherish these days as I feel so good on them - no herxing. Well, clearly I had messed up my balance as I had a lot of fatigue, tongue and throat swelling, headache, plus general malaise going on. My only conclusion is that it had to be the stress of the busy week.
Proof right there that this balancing act with lyme isn't easy. My friend likened it to walking a tightrope - the smallest thing can knock you right off.
Will keep practice getting better at it though - this is life right? Everyone, lymie or not, has to come to know their own bodies and spirits deeply so as to keep that delicate balance of enough rest, enough play, enough nourishment - all on a daily basis. Lyme just takes the whole deal up a notch - keeping us on our toes.
Friday, June 7, 2013
progress and pauses...
Well, I've hit the threshold of my 'go slow' idea with the Cowden Support Protocol. I just hit 26 drops on my most recent Cumanda and Mora rotation and I have been herxing for 2 days now. Red face, swollen glands and throat, wicked headache, body aches, not sleeping well, fatigue, irritability. Up until now though - up to 25 drops - I was doing pretty well! As well as I ever do. I was increasing drops about every 2.5 to 3 days. Versus every 1.5 to 2 days like I normally try to do.
So... will the theory still work? Do I just need to slow down? Maybe go from 25 to 30 drops by increasing by 1 drop every 3 or 4 days? I don't know... I will continue to experiment. I'm not going to drop down to 25 drops to get through this herx though. I'll wait it out. Lots of detoxing. Water, smoothies, green juice, fewer grains, rest. Grains really seem to trip me up. Especially at dinner.
Half an hour after dinner the last 2 nights and I feel terrible. I don't know if it's from eating - and the extra energy my body must use to digest the food. Or whether it would happen regardless of eating - as I tend to have symptoms worsen as the day progresses anyhow.
Doesn't matter. I'll keep trekking along and see if I can play with this to reduce the herxing.
After mentioning some of this to a friend yesterday, I had her ask me how I do this. How I get through each day living with chronic lyme disease. Trying to live while feeling like I have a horrible flu most days. And just a mild flu on the few and far between excellent days. I deeply understand the question - the suicide rate for chronic lyme is very high. It's a hard disease to face day after day, year after year.
And I'm not entirely sure how I do it. Or if I'm getting better at it. I hope so. There is less panic than during the time I was misdiagnosed, and also less than during the first brutal six months to a year after diagnosis and starting treatment. But I am better physically now than I was then too. Which makes it easier to keep it together emotionally.
I take things a day at a time. Because thinking about the future and the past can both freak me out if I am not careful. There is so much grief, and there are so many unknowns for the future. I do know that I like life and I don't want to give up. I'm not ready to be done yet. It's the hardest thing I have ever had to do - facing what feels like endless days (and often endless nights) with symptoms that are very uncomfortable at best and terrifying at their worst. And of course you never know, one day to the next, what you'll be facing symptom-wise. Sometimes I can give an educated guess. But generally they continue to surprise me.
After plenty of thought, I finally realized that this is really no different than what anyone has to face being in a human body here on earth. None of us know what tomorrow will bring. Most of us have had difficult times in the past. Most of us are dealing with daily challenges of some sort.
Chronic illness is a unique challenge of course. And I expect there are both similarities and differences in how all those going through it handle it emotionally. For me, to get through and not go absolutely cuckoo bananas, I constantly bring my mind back to positives. To gratitude for what I DO have. Versus being non-stop upset about the losses. The losses are constant of course. From not being able to travel to an important family event, to losing your temper with your kids, gaining control, and losing it again within a span of 3 minutes. Over and over and over. Thank you lyme rage!
I can't compare myself or my life with anyone else if I want to stay in a good place emotionally - who I used to be, what I want to be, how my friends or neighbours are, how my family is. It is too hard and makes me feel bad. So I stay as much as I can in the now and in gratitude.
Today, gratitude includes that my fingers are mostly cooperating to type. Gratitude that I can share these thoughts in hope that they may ease someone else's journey - just knowing we're not alone - there are others out there going through hard stuff. Impossible to comprehend hard stuff. Gratitude that while I can't take my children out to do something today (it's a school PD day), that I can at least sit here in the house with them. Gratitude they have a mom. Gratitude for looking out the window at the vibrant colours of the grass, trees and plants in my yard.
The little stuff that is really the huge stuff.
This is my life right now. And it's amazing when I choose to let go of the fear and focus directly on the wonder and sheer fun of it. So a lot of the time I do.
So... will the theory still work? Do I just need to slow down? Maybe go from 25 to 30 drops by increasing by 1 drop every 3 or 4 days? I don't know... I will continue to experiment. I'm not going to drop down to 25 drops to get through this herx though. I'll wait it out. Lots of detoxing. Water, smoothies, green juice, fewer grains, rest. Grains really seem to trip me up. Especially at dinner.
Half an hour after dinner the last 2 nights and I feel terrible. I don't know if it's from eating - and the extra energy my body must use to digest the food. Or whether it would happen regardless of eating - as I tend to have symptoms worsen as the day progresses anyhow.
Doesn't matter. I'll keep trekking along and see if I can play with this to reduce the herxing.
After mentioning some of this to a friend yesterday, I had her ask me how I do this. How I get through each day living with chronic lyme disease. Trying to live while feeling like I have a horrible flu most days. And just a mild flu on the few and far between excellent days. I deeply understand the question - the suicide rate for chronic lyme is very high. It's a hard disease to face day after day, year after year.
And I'm not entirely sure how I do it. Or if I'm getting better at it. I hope so. There is less panic than during the time I was misdiagnosed, and also less than during the first brutal six months to a year after diagnosis and starting treatment. But I am better physically now than I was then too. Which makes it easier to keep it together emotionally.
I take things a day at a time. Because thinking about the future and the past can both freak me out if I am not careful. There is so much grief, and there are so many unknowns for the future. I do know that I like life and I don't want to give up. I'm not ready to be done yet. It's the hardest thing I have ever had to do - facing what feels like endless days (and often endless nights) with symptoms that are very uncomfortable at best and terrifying at their worst. And of course you never know, one day to the next, what you'll be facing symptom-wise. Sometimes I can give an educated guess. But generally they continue to surprise me.
After plenty of thought, I finally realized that this is really no different than what anyone has to face being in a human body here on earth. None of us know what tomorrow will bring. Most of us have had difficult times in the past. Most of us are dealing with daily challenges of some sort.
Chronic illness is a unique challenge of course. And I expect there are both similarities and differences in how all those going through it handle it emotionally. For me, to get through and not go absolutely cuckoo bananas, I constantly bring my mind back to positives. To gratitude for what I DO have. Versus being non-stop upset about the losses. The losses are constant of course. From not being able to travel to an important family event, to losing your temper with your kids, gaining control, and losing it again within a span of 3 minutes. Over and over and over. Thank you lyme rage!
I can't compare myself or my life with anyone else if I want to stay in a good place emotionally - who I used to be, what I want to be, how my friends or neighbours are, how my family is. It is too hard and makes me feel bad. So I stay as much as I can in the now and in gratitude.
Today, gratitude includes that my fingers are mostly cooperating to type. Gratitude that I can share these thoughts in hope that they may ease someone else's journey - just knowing we're not alone - there are others out there going through hard stuff. Impossible to comprehend hard stuff. Gratitude that while I can't take my children out to do something today (it's a school PD day), that I can at least sit here in the house with them. Gratitude they have a mom. Gratitude for looking out the window at the vibrant colours of the grass, trees and plants in my yard.
The little stuff that is really the huge stuff.
This is my life right now. And it's amazing when I choose to let go of the fear and focus directly on the wonder and sheer fun of it. So a lot of the time I do.
Sunday, June 2, 2013
Feeling kind of good!
I seem to have recovered from that last weekend of guests! Woo hoo! I'm feeling good, surprisingly good. It happens so rarely. I can't help but love it like I'm a kid on Christmas morning.
I am also wondering if this new 'go slow' regimen of increasing my Cowden drop dosage very slowly - so I don't herx nearly brutally for weeks on end - is working.
Maybe I'm just having a good couple of days. But maybe it is working. :)
I don't usually feel very well on this rotation - Cumanda and Mora. Especially not as I increase my dosage from the initial 20 drops I start with to the 30 drops required. (You're supposed to start at 30 but I find I can only safely handle 20 at the beginning of each new rotation.)
I am excited.
I find myself almost deliriously happy on good days. Like life is the best thing ever. Which it can be, and I do, deep down, really believe it is. But it's such a relief not to have to try so hard to see it through massive fatigue and pain. Don't get me wrong, I am still having symptoms. But I feel much better than usual. I can walk a bit further without feeling totally gross. Just a little gross. My head doesn't spin as much. It even feels kind of clear for parts of the day.
I can't remember what it feels like to be in a healthy body but I love these little glimpses!
Happy day.
I am also wondering if this new 'go slow' regimen of increasing my Cowden drop dosage very slowly - so I don't herx nearly brutally for weeks on end - is working.
Maybe I'm just having a good couple of days. But maybe it is working. :)
I don't usually feel very well on this rotation - Cumanda and Mora. Especially not as I increase my dosage from the initial 20 drops I start with to the 30 drops required. (You're supposed to start at 30 but I find I can only safely handle 20 at the beginning of each new rotation.)
I am excited.
I find myself almost deliriously happy on good days. Like life is the best thing ever. Which it can be, and I do, deep down, really believe it is. But it's such a relief not to have to try so hard to see it through massive fatigue and pain. Don't get me wrong, I am still having symptoms. But I feel much better than usual. I can walk a bit further without feeling totally gross. Just a little gross. My head doesn't spin as much. It even feels kind of clear for parts of the day.
I can't remember what it feels like to be in a healthy body but I love these little glimpses!
Happy day.
Subscribe to:
Posts (Atom)