The words of my favorite poem, Invictus, gives me so much courage, time and time again.
Invictus
Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud,
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the horror of the shade,
And yet the menace of the years
Finds, and shall find me, unafraid.
It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.
XMRV Virus
Well, as you probably have guessed by the lack of postings about my ABX protocol it did not work out. In short, it was a disaster.
First, I should not have started with the InterfasePlus to attack the biofilms but start slowly with the Interfase without the Plus and than add a low abx after the dust had settled I should have started working on the biofilms.
Alas that is not how it went. dr. V. told me to start with the Plus and that is what I did, other patients had wonderful results with it, I nearly ended up in ER. Only my fear and terror of ER's kept me out of it this time. I blatantly refused to go. I have seen too many ME friends ending up in ER and being treated with shocking conventional meds and nearly die. Shocking for the system, we can't take the same treatment as 'normal' people get! We're too damned sensitive!
After I slowly tried to build up the InterfasePlus with 1/4 of a dose I got serious Tachycardia, dizziness and low BP which made me faint again of course, blazing migraines and that heart that wouldn't beat a normal beat. I was sweating like I was in menopause and had hot flashes and I knew it was seriously wrong. A great deal of the viral and bacterial infection is in my heart and so are the biofilms. No wonder I started to feel rotten, they didn't like being messed with. Plus my lack of detox capabilities made it even worse. I drank loads of electrolyte enhanced fluids, took charcoal hoping to bind whatever was causing my heart to behave like a 9.0 earthquake, mud packs, the whole shebang.
It took days before my heart rate was back to normal and I can't tell you how exhausting that is. You can't sleep, don't know how to lie down or sit up, toss and turn, bend over to help that little organ that regulates the heart rhythm get back into it's normal shape. I took medication to get the rhythm back to normal and in the end it worked out but all the while I felt like I was dying.
And that was that. I had a relapse that took me almost all summer to get back to were I was and I'm still not there and probably never will.
It has been a difficult summer. A couple of my dear online ME friends died and I had to come to terms with that. All as ill as I am and you can’t help and wonder if that is going to be next for you as well. You somehow have to make peace with it, if not, life, what is left of it is going to be a struggle. I'm still working on it though.
I hoped to be well enough to travel by September, what was I thinking? Of course I wasn't. My daughter gave birth without me being present to her first one, a beautiful baby boy. I know she needed me there, it was a difficult birth and I felt utterly useless and failing as a mom. Again. A 19 hour travel just wasn't in the cards for me.
This rotten disease knows no boundaries in taking what is mine, the more it takes the more it wants. It's a hungry beast with a bottomless stomach. Melancholy and grief seemed to be the theme of the summer, there was just no end to it. Just when you thought you conquered one problem physical or emotional another one popped up.
After new testing, 21 vials again, yes the big ones, we decided to start with the antivirals this time. Test results were not good, viral load is way up from all kinds of viral infections so it's needed to start doing something. If we do nothing it will be over pretty soon so we might as well give it a shot.
At the moment I'm looking at my container with Valtrex, patiently waiting for me to start taking them. I was ready for it had I not decided that a massage would be a good idea I probably would have started by now. But that trigger point massage, from a wonderful in home massage therapist I might add, threw me in a total relapse, again!
Dr.V. had already warned me to be careful not to move lymph fluids but I gathered him being his usually overprotective self towards me, how much damage could a massage do. Well let me tell you,.... a LOT! Within 2 hours I was reduced to a blubbering shaking, shivering mass that didn't know where to turn to get rid of so much pain that was traveling through my body as a roller coaster in a Disney park.
It's 4 weeks now and it's slowly getting less, except the spinal cord inflammation. Dr. V suggested a DMSO IV, apparently it will help for inflammation. I'm scared for cardiac problems but at this point I'm willing to try anything. A side effect of DMSO is it's smell that generates from the patient, comparable to rotten eggs or garlic. The stories I have read tell of couples that need to sleep apart because of the smell and can't stand to be in one room together.
We already have our own bedrooms so we solved that problem. My need to be alone, in total darkness and quietness and strange sleeping hours was keeping W. awake and he has to work the next day so I got my own room where all my things are surrounding me and me hospital bed that goes up and down at the head and feet. I can lay there all day and bother no-one.
Now we have to find a day that I can be up longer than 2 hours so I can get the IV. I hope I can manage somehow to get to the clinic, and sit in the chair which will be a challenge. Last time we tried an IV I left crying because of the pain it causes me to sit in a recliner for longer than 20 min. Maybe if the had a bed I could lay on my side, that would help. Or maybe I can bring my own bed in the form of an Aero bed ;-) Set it up in the hallway and lie down. i might suggest that and ask them to take pics. Great fun ;-) We are so easily amused ;-)
I had a few requests to post some test results and a medication/supplement list of what I already take, will do so tomorrow.
# # #
Invictus
Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud,
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the horror of the shade,
And yet the menace of the years
Finds, and shall find me, unafraid.
It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.
XMRV Virus
Well, as you probably have guessed by the lack of postings about my ABX protocol it did not work out. In short, it was a disaster.
First, I should not have started with the InterfasePlus to attack the biofilms but start slowly with the Interfase without the Plus and than add a low abx after the dust had settled I should have started working on the biofilms.
Alas that is not how it went. dr. V. told me to start with the Plus and that is what I did, other patients had wonderful results with it, I nearly ended up in ER. Only my fear and terror of ER's kept me out of it this time. I blatantly refused to go. I have seen too many ME friends ending up in ER and being treated with shocking conventional meds and nearly die. Shocking for the system, we can't take the same treatment as 'normal' people get! We're too damned sensitive!
After I slowly tried to build up the InterfasePlus with 1/4 of a dose I got serious Tachycardia, dizziness and low BP which made me faint again of course, blazing migraines and that heart that wouldn't beat a normal beat. I was sweating like I was in menopause and had hot flashes and I knew it was seriously wrong. A great deal of the viral and bacterial infection is in my heart and so are the biofilms. No wonder I started to feel rotten, they didn't like being messed with. Plus my lack of detox capabilities made it even worse. I drank loads of electrolyte enhanced fluids, took charcoal hoping to bind whatever was causing my heart to behave like a 9.0 earthquake, mud packs, the whole shebang.
It took days before my heart rate was back to normal and I can't tell you how exhausting that is. You can't sleep, don't know how to lie down or sit up, toss and turn, bend over to help that little organ that regulates the heart rhythm get back into it's normal shape. I took medication to get the rhythm back to normal and in the end it worked out but all the while I felt like I was dying.
And that was that. I had a relapse that took me almost all summer to get back to were I was and I'm still not there and probably never will.
It has been a difficult summer. A couple of my dear online ME friends died and I had to come to terms with that. All as ill as I am and you can’t help and wonder if that is going to be next for you as well. You somehow have to make peace with it, if not, life, what is left of it is going to be a struggle. I'm still working on it though.
I hoped to be well enough to travel by September, what was I thinking? Of course I wasn't. My daughter gave birth without me being present to her first one, a beautiful baby boy. I know she needed me there, it was a difficult birth and I felt utterly useless and failing as a mom. Again. A 19 hour travel just wasn't in the cards for me.
This rotten disease knows no boundaries in taking what is mine, the more it takes the more it wants. It's a hungry beast with a bottomless stomach. Melancholy and grief seemed to be the theme of the summer, there was just no end to it. Just when you thought you conquered one problem physical or emotional another one popped up.
After new testing, 21 vials again, yes the big ones, we decided to start with the antivirals this time. Test results were not good, viral load is way up from all kinds of viral infections so it's needed to start doing something. If we do nothing it will be over pretty soon so we might as well give it a shot.
At the moment I'm looking at my container with Valtrex, patiently waiting for me to start taking them. I was ready for it had I not decided that a massage would be a good idea I probably would have started by now. But that trigger point massage, from a wonderful in home massage therapist I might add, threw me in a total relapse, again!
Dr.V. had already warned me to be careful not to move lymph fluids but I gathered him being his usually overprotective self towards me, how much damage could a massage do. Well let me tell you,.... a LOT! Within 2 hours I was reduced to a blubbering shaking, shivering mass that didn't know where to turn to get rid of so much pain that was traveling through my body as a roller coaster in a Disney park.
It's 4 weeks now and it's slowly getting less, except the spinal cord inflammation. Dr. V suggested a DMSO IV, apparently it will help for inflammation. I'm scared for cardiac problems but at this point I'm willing to try anything. A side effect of DMSO is it's smell that generates from the patient, comparable to rotten eggs or garlic. The stories I have read tell of couples that need to sleep apart because of the smell and can't stand to be in one room together.
We already have our own bedrooms so we solved that problem. My need to be alone, in total darkness and quietness and strange sleeping hours was keeping W. awake and he has to work the next day so I got my own room where all my things are surrounding me and me hospital bed that goes up and down at the head and feet. I can lay there all day and bother no-one.
Now we have to find a day that I can be up longer than 2 hours so I can get the IV. I hope I can manage somehow to get to the clinic, and sit in the chair which will be a challenge. Last time we tried an IV I left crying because of the pain it causes me to sit in a recliner for longer than 20 min. Maybe if the had a bed I could lay on my side, that would help. Or maybe I can bring my own bed in the form of an Aero bed ;-) Set it up in the hallway and lie down. i might suggest that and ask them to take pics. Great fun ;-) We are so easily amused ;-)
I had a few requests to post some test results and a medication/supplement list of what I already take, will do so tomorrow.
# # #
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