After writing my last post the other day, "The Increased Amplitude of Emotions", I came across an entry on Reddit linking to a podcast discussing Chronic Lyme Disease and the use of Cannabis Oil (link below). The show touched upon and discussed nearly every topic that I brought up in my post, plus many more. It was one of the best dialogues I've heard, not only regarding Lyme and Cannabis Oil, but just dealing and living with Chronic Lyme Disease in general.
It seems a bit of a coincidence that I happened upon this podcast after writing my last post, especially considering I had also just read an article about being aware of synchronicity in daily life - that I also came across kind of coincidentally. It is what it is…..
High Noon - Cannabis Oil and Lyme Disease
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For the next two weeks, I'm going to stay the course with my current treatment protocol. Meaning, I basically will have no freakin' clue what is working and what's not working.
Did I sleep better last night because of the Melatonin? Is that finally working after taking it for a month? Or, perhaps it's the DHEA or maybe the Testosterone injections or the Cannabis Paste or the fact that I overdid it the day before or maybe I'm having a reaction to one of the three antibiotics or some of the other oddball supplements are doing something…….
When I'm asked if the antibiotics are "working", I never know how to answer. Yes, I do feel worse when I take certain ones. Some give me energy. Some make me feel drunk. They all give me incredible headaches the first few days I start them. However, It's hard to say which does which, as I'm always taking at least three antibiotics at the same time.
My supplement protocol is always in flux as well. Plus, I'm now taking high doses of Vitamin D3, low doses of hydrocortisone to help up my cortisol levels, and am still sticking 1cc of of testosterone into my thigh every five days.
Environmental factors play a huge roll in how I'm feeling as well. The smallest stressor, such as a phone call from the Social Security Administration saying that something happened to your paperwork again and that you have to do it all over for the third (fourth?) time, can send one off the rails. Just typing it out again can cause one's heart rate to go up a little. You'll have to trust me on this one right now. Grrr…...
Dealing with two year old twin awesome crazy girls that don't understand how much pain daddy is in can be quite taxing as well. Going to a 30 minute doctors appointment 2 miles down the road usually destroys the rest of the day.
So, yeah, who in the hell knows what is working what isn't. When every single action you take seemingly produces a negative counter reaction, be it from a pill or food or walking to get the mail, it can all get a tad confusing. Throw the brain fog and derealization and other neuro symptoms in on top of all of this, and you get the "Consuela" of the disease world (a Consuela is a horrible, and horribly strong mixed drink, I sort of remember from my college days in Corvallis).
Here's what I do know - this current protocol is killing my insides, destroying everything I have worked so hard for over the past five years. I probably have a better chance of maintaining a healthy gut while on antibiotics than most, simply due to the dietary changes I have made, knowing what to eat, and knowing what to avoid. However, it hasn't even been a month and I am losing the battle of the healthy gut alarmingly fast.
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Because I still have two weeks to go on this current regime, I'm not going to make any bold proclamations or lay out any grand plans. Right now, I just have a general outline that I'll fill in as the end of the month approaches.
This basic plan is to finish the current course of antibiotics, stop taking the hydrocortisone and Testosterone when the antibiotics are finished, and to greatly whittle back the use of the supplements. Of course, I will be doing this under the direction of my doctor, as he's quite supportive in these matters.
I recently started experimenting with a new type of concentrated cannabis extract that is commonly referred to as Cannabis Paste. I came across the idea on a website promoting the use of the paste as an alternative to Rick Simpson Oil. You can visit the site here: NewCure.org
I plan on making a full and very detailed post about this in the future. Although I cannot and will not make any claims about the paste now, I will say that I have been sleeping better than I have in YEARS since starting to take it one week ago. I would be happy to answer any questions anyone has the best I can.
My basic reason for experimenting with the paste? I like the simplicity of it and the fact that making it doesn't involve any extract procedures using nasty solvents. Also, the paste requires MUCH less raw cannabis material to make, a HUGE consideration for DIY'ers like me who can't afford to buy, or make, Rick Simpson Oil.
The real test will come in a couple of weeks when I am only using the paste. I already know that using it helps calm my stomach after taking my antibiotic dose, and it also greatly reduces my lower back, hip and SI Joint pain (helping me sleep much longer than normal). Does it produce a Herxenheimer Reaction, though? I know that RSO does. Will the paste?
I'll report back with answers in a few weeks.
thanks for reading.
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Here's the link to the podcast again:
High Noon - Cannabis Oil and Lyme Disease
Monday, February 17, 2014
Saturday, February 15, 2014
The Increased Amplitude of Emotions
It's been almost two weeks since my last post, and not coincidentally, two weeks since I started my newest round of medication. Besides setting new personal records in pain endurance over a five day period early in the month, things have been going pretty much as expected. Let's just say, my expectations are very, very low.
My doctor had told me, and as I have read over and over on the web, chronic lyme patients often feel much, much worse when starting new meds (the Herx Reaction). After a few days, the patient is supposed to start feeling a little better as bugs are killed, eliminated, and then go into hiding in their cyst form. The thinking goes that month long pulses of strong antibiotics will eventually catch the invaders when they are vulnerable, killing them in the process and driving others back into hiding. Changing up the antibiotics each month or so keeps the bugs guessing.
I have a feeling that this method will be looked at as quite archaic in a decade or two. It's like decapitating a patient to get rid of his or her headache. It will be interesting to see what the future holds for both Lyme and Cancer treatments, each of which involves making a patient much sicker in order to get them better. However, how many really every do truly get better using this approach?
Honestly, I'm confused more than anything. My wife and I have worked very hard at changing our diets and re-learning how to eat. Doing this has been the number one best thing that I have done to help improve my condition. Bar none, the best thing by far. I can not emphasize this enough.
Twice a day I take a nuclear dose of antibiotics that sets off WWIII inside my belly. I'm being warned about candida and all kinds of other wonderful things. These drugs make me so sick that I can't get off the floor for nearly a week. When I finally do pull myself up, I feel entirely empty and dead inside. Almost emotionless.
I can keep telling myself to be positive, think happy thoughts, relax, watch some of my favorite old movies and laugh, etc…. It seems I can generate an overall feeling of tolerance for my situation in short bursts, but these are quickly swept aside. It's seems to be the specialty of the Doxycycline while it's inside my body - keeping everything tipped towards the negative. I noticed this last time I was on it as well.
The previous regiment I was on was much different, better overall, but still pretty horrible in its own way. It did allow me to be more active, but I also felt a lot more unbalanced. It was kind of a happy crazy, where I actually felt a bit creative, had the desire to work on things, do things, communicate with people, write, etc. Right now, I just want to…… I don't know, stare at a wall? Lie on the floor?
If I could, I'd just sleep for the next two weeks.
To wrap this up and tie it all together, this treatment path just doesn't feel right. Perhaps I need to seek out more success stories. I haven't found many for Chronic Lyme Patients who were misdiagnosed for as long as I was, but there are some out there. The bitch is, most of these people have used different approaches to get better. There really is no consensus on what works. Patients get in arguments with each other regarding different protocols that their doctors promote all the time. It's weird.
I'm just trying to grapple with how to approach all this that is not only best for myself, but for my family as well. Me being locked in my room for a month at a time, unable to even be around other people, is no way to get healthy. Taking medications that annihilate who I am, making me an uncaring, blank, emotionless turd, is no way to get healthy. Destroying the health of my gut and digestive system - also, no way to get healthy.
I don't know what the answer is. I'm simply just going to have to give this some more time. This sickness doesn't just affect me, though, but those around me too. I am über-aware of this, probably to a fault. I feel so bad for what this disease has done to my family, how it has turned our lives upside down.
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And, another negative, depressing post. THIS is why I disappear when I feel like this. I don't like putting this kind of energy out there, but shit, it IS my life right now. And, that's what this blog is about.
Hopefully I'll be back with a happier post soon. The kids are up, so I best go say good morning. Best part of my day. I just wish it lasted longer.
Thanks for reading. Take care.
My doctor had told me, and as I have read over and over on the web, chronic lyme patients often feel much, much worse when starting new meds (the Herx Reaction). After a few days, the patient is supposed to start feeling a little better as bugs are killed, eliminated, and then go into hiding in their cyst form. The thinking goes that month long pulses of strong antibiotics will eventually catch the invaders when they are vulnerable, killing them in the process and driving others back into hiding. Changing up the antibiotics each month or so keeps the bugs guessing.
I have a feeling that this method will be looked at as quite archaic in a decade or two. It's like decapitating a patient to get rid of his or her headache. It will be interesting to see what the future holds for both Lyme and Cancer treatments, each of which involves making a patient much sicker in order to get them better. However, how many really every do truly get better using this approach?
Honestly, I'm confused more than anything. My wife and I have worked very hard at changing our diets and re-learning how to eat. Doing this has been the number one best thing that I have done to help improve my condition. Bar none, the best thing by far. I can not emphasize this enough.
Twice a day I take a nuclear dose of antibiotics that sets off WWIII inside my belly. I'm being warned about candida and all kinds of other wonderful things. These drugs make me so sick that I can't get off the floor for nearly a week. When I finally do pull myself up, I feel entirely empty and dead inside. Almost emotionless.
I can keep telling myself to be positive, think happy thoughts, relax, watch some of my favorite old movies and laugh, etc…. It seems I can generate an overall feeling of tolerance for my situation in short bursts, but these are quickly swept aside. It's seems to be the specialty of the Doxycycline while it's inside my body - keeping everything tipped towards the negative. I noticed this last time I was on it as well.
The previous regiment I was on was much different, better overall, but still pretty horrible in its own way. It did allow me to be more active, but I also felt a lot more unbalanced. It was kind of a happy crazy, where I actually felt a bit creative, had the desire to work on things, do things, communicate with people, write, etc. Right now, I just want to…… I don't know, stare at a wall? Lie on the floor?
If I could, I'd just sleep for the next two weeks.
To wrap this up and tie it all together, this treatment path just doesn't feel right. Perhaps I need to seek out more success stories. I haven't found many for Chronic Lyme Patients who were misdiagnosed for as long as I was, but there are some out there. The bitch is, most of these people have used different approaches to get better. There really is no consensus on what works. Patients get in arguments with each other regarding different protocols that their doctors promote all the time. It's weird.
I'm just trying to grapple with how to approach all this that is not only best for myself, but for my family as well. Me being locked in my room for a month at a time, unable to even be around other people, is no way to get healthy. Taking medications that annihilate who I am, making me an uncaring, blank, emotionless turd, is no way to get healthy. Destroying the health of my gut and digestive system - also, no way to get healthy.
I don't know what the answer is. I'm simply just going to have to give this some more time. This sickness doesn't just affect me, though, but those around me too. I am über-aware of this, probably to a fault. I feel so bad for what this disease has done to my family, how it has turned our lives upside down.
---
And, another negative, depressing post. THIS is why I disappear when I feel like this. I don't like putting this kind of energy out there, but shit, it IS my life right now. And, that's what this blog is about.
Hopefully I'll be back with a happier post soon. The kids are up, so I best go say good morning. Best part of my day. I just wish it lasted longer.
Thanks for reading. Take care.
Monday, February 3, 2014
A New Antibiotics Protocol
The medicines we must take to treat Lyme. They can be interesting.
Whenever I get a new prescription for something, I usually go home and look up exactly what the medicine is, what it is used for, side effects, etc…
Here is my new list of meds I just started:
I don't know, I just feel like a big petri dish after reading about all of the fungus and mold and other crap they use these medications for. And, it seems as if this combination is a bit much for me. I can't hold it in.
Here's a picture for you - imagine having severe bilateral sciatic nerve problems that run from the middle of your back all the way to your toes. Now, imagine violently vomitting 10 plus times in a row from a sitting position hunched over a garbage can.
It felt like Freddy Krueger was ripping my taint out with each heave. It happens when I sneeze in that position sometimes, too.
I'll leave you with that image. I'm exhausted.
Next post - the research I've been doing on highly potent cannabis oils to treat Lyme. I'm talking about replacing antibiotics totally if possible. My body can't take 'em orally it seems. The next step after that for antibiotics is not pretty (IV in heart). Yeah, that sounds like a fun 2-10 years of living….
Sorry for the lack of replies and lack of communication lately. Been a rough go, but I'm hanging in there. I have some fun pictures from the girls' birthday to share when I have the energy to go through them. They definitely keep me smiling.
Whenever I get a new prescription for something, I usually go home and look up exactly what the medicine is, what it is used for, side effects, etc…
Here is my new list of meds I just started:
- Doxycycline
- Nystatin
- Azithromycin
I don't know, I just feel like a big petri dish after reading about all of the fungus and mold and other crap they use these medications for. And, it seems as if this combination is a bit much for me. I can't hold it in.
Here's a picture for you - imagine having severe bilateral sciatic nerve problems that run from the middle of your back all the way to your toes. Now, imagine violently vomitting 10 plus times in a row from a sitting position hunched over a garbage can.
It felt like Freddy Krueger was ripping my taint out with each heave. It happens when I sneeze in that position sometimes, too.
I'll leave you with that image. I'm exhausted.
Next post - the research I've been doing on highly potent cannabis oils to treat Lyme. I'm talking about replacing antibiotics totally if possible. My body can't take 'em orally it seems. The next step after that for antibiotics is not pretty (IV in heart). Yeah, that sounds like a fun 2-10 years of living….
Sorry for the lack of replies and lack of communication lately. Been a rough go, but I'm hanging in there. I have some fun pictures from the girls' birthday to share when I have the energy to go through them. They definitely keep me smiling.
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