I woke up with a start again way to early this morning, well I think 4:30 am is too early. My neighbor, who is a police office did leave for work at 5 so I know peoples days do start this early. The had clearly had night sweats again and the back of my neck and hair were just soaked. I wish someone out there would post the herbs that the nutritionist in NYC uses for blasto. I paid a huge consultation fee a few years ago for an initial phone consult and was so upset with the fact that I had pulled together 10 years of history that was ignored.
I guess when you become that good individual stories don't matter since the subject matter expert knows from experience, and I really do get that for the most part, but it makes for a better relationship to acknowledge the patient to some extent. Anyway I did not continue because I did not think the success rate was all that high and I an old pro at going down that road. But I think he/they have improved their approach.
This concept of rotating the few herbs that are powerful enough every few days has some merit, but the golden question is which herbs. I have kinda been approaching that for the last week and yesterday it would have been time to bring in another, but I did not know what to take so decided maybe it was good take a break for a day and here I am one day without taking herbs and back to an early morning attack, from either too much rice or the mini chocolate chips I ate last night. So is this a result of not going for a few days or the fact that I went one day without any herbs. I know the infection is still quit strong and that 8 days or so on herbs is nothing for this mother of them all, but was still not expecting this roller coaster this morning.
so things to consider in a plan moving forward:
adding back in bee pollen
adding enzymes especially lipase
increasing the magnesium
finding a few other herbs to rotate in
adding psyllium husk to help move stuff off my bowel wall
I hate the shaking feeling and the agitation that comes with th
Sunday, June 29, 2014
Thursday, June 19, 2014
out my living room window
We are going to need a new living room sofa sooner than later. I have spent a good part of this year living on it. There is something comforting about looking out my living room window. First I know the scene and repetition and familiarity are comforting. The house across the street from the sofa view is a well maintained lovely white and stone faced ranch. It is one of 3 styles of homes in our 40 plus year old development. There have been additions and landscaping and such to the homes over the years, and since it is beyond mature as far as developments go it has lost some of that cookie cutter feel, but none the less, there are very clearly 3 styles of houses.
We are told this house across the street was the model for that style when the development was under construction. Stone, while common in this part of the country, is still an expensive upgrade and there are not too many others like it. The white siding is crisp and clean and I can't explain why but is a comforting color. It just seems to fit the house.
There are tons of matured trees in the background and I have watched them slowly change from bright colors of yellow and red to lovely works of art in nature with branch work, to new life with that intoxicating fresh green color of spring. And now in the middle of June they are full blown into summer green. And I have to confess it is still almost a shock. We had such a rough winter this year with storm after storm that I was starting to develop serious anxiety over the next weather report. Even though yesterday was a 90 degree day I still look out and sigh relief at the sight of summer trees.
They also have a flag coming off the front porch. I know when the timer on the exterior lighting will turn the lights off at night and I see my one neighbor on early mornings like this getting the paper from the driveway.
I can see down the street slightly to the next house which has nice exterior lighting. A warm glow that again says home.
And too think if I did not have blasto and c.diff I would never have spent so much of my time at home here on this living room sofa jolting awake at all hours of the night and would have completely missed out on this perspective.
We are told this house across the street was the model for that style when the development was under construction. Stone, while common in this part of the country, is still an expensive upgrade and there are not too many others like it. The white siding is crisp and clean and I can't explain why but is a comforting color. It just seems to fit the house.
There are tons of matured trees in the background and I have watched them slowly change from bright colors of yellow and red to lovely works of art in nature with branch work, to new life with that intoxicating fresh green color of spring. And now in the middle of June they are full blown into summer green. And I have to confess it is still almost a shock. We had such a rough winter this year with storm after storm that I was starting to develop serious anxiety over the next weather report. Even though yesterday was a 90 degree day I still look out and sigh relief at the sight of summer trees.
They also have a flag coming off the front porch. I know when the timer on the exterior lighting will turn the lights off at night and I see my one neighbor on early mornings like this getting the paper from the driveway.
I can see down the street slightly to the next house which has nice exterior lighting. A warm glow that again says home.
And too think if I did not have blasto and c.diff I would never have spent so much of my time at home here on this living room sofa jolting awake at all hours of the night and would have completely missed out on this perspective.
Wednesday, June 18, 2014
pros and cons of a certain probiotic
As more and more gets posted by blasto suffers on line it is easier to find bits and pieces of different things people are trying. I am convinced beyond a doubt of 2 things. First if I could find some way to change my colon environment and make it less hospitable I could weaken the blasto. Second I am so nutrionally deficient that the right supplement combination could make a big difference. Coming in a distance third is how long a person has been infected (although I hate admitting this one because I fall into the ill for so long that my up hill battle is to steep you can't see the top of the hill).
One thing I have been trying since the alinia mess is a very specific probiotic, Ohhira's. I have read strings where people just mention it in passing as helping, but the real reason I tried is one testimonila out there of a woman who says it cured her. She says after trying so many other things from other probiotics to supplements to all kinds of antibiotics. Sounds so much like me with one expection - she had only been sick for about 6 months. And length of time with illness seems to be an indicator of any potential success of healing or better yet a cure.
I started taking ohhira's right after I came off of dificid. dificid is a drug for another colon infection and for what ever reason this drug seems to reduce the active blasto. It does not penetrate the mother colony or penetrate the biofilm or what ever thing is holding it in a large mass at my hot spot,, but it does have a positive effect.
So it could be that the infection was slightly reduced. If this sounds interesting I would suggest better research on the product before giving it a go.
I have to add here that the above was written when I seemed to be tolerating ohhira's and for some reason the last few days, I have not been. What a hit or miss way to try and make progress.
Still if you are out there trying to find things to add that will make a difference, consider this.
One thing I have been trying since the alinia mess is a very specific probiotic, Ohhira's. I have read strings where people just mention it in passing as helping, but the real reason I tried is one testimonila out there of a woman who says it cured her. She says after trying so many other things from other probiotics to supplements to all kinds of antibiotics. Sounds so much like me with one expection - she had only been sick for about 6 months. And length of time with illness seems to be an indicator of any potential success of healing or better yet a cure.
I started taking ohhira's right after I came off of dificid. dificid is a drug for another colon infection and for what ever reason this drug seems to reduce the active blasto. It does not penetrate the mother colony or penetrate the biofilm or what ever thing is holding it in a large mass at my hot spot,, but it does have a positive effect.
So it could be that the infection was slightly reduced. If this sounds interesting I would suggest better research on the product before giving it a go.
I have to add here that the above was written when I seemed to be tolerating ohhira's and for some reason the last few days, I have not been. What a hit or miss way to try and make progress.
Still if you are out there trying to find things to add that will make a difference, consider this.
is the key missing supplements?
So, if you scour the internet looking for blasto stories you will find a few themes. First there are the triple cocktail discussions, then the drug failures and although there are more thread the last common theme is improvement with supplementation's. It is this last one I am most interested in now and maybe that is because I have spent years on the other 2 topics.
I am convinced beyond a doubt that it has to be a contributing factor. The question then remains what to try and how much do I need. I have been on many supplements before but not the right combination.
I need a plan to add things one day at a time, and keep going until I notice a difference. This is extremely time consuming when I am hypersensitive to it appears everything. But I started a few weeks ago with magnesium and trace minerals. And I have noticed slight changes with the magnesium but nothing huge. Do I need to increase the amount I am taking or is it just going to take months for my body to notice anything since I am so deficient?
If anyone reading this has had success with high doses of supplements, please let me know.
I am convinced beyond a doubt that it has to be a contributing factor. The question then remains what to try and how much do I need. I have been on many supplements before but not the right combination.
I need a plan to add things one day at a time, and keep going until I notice a difference. This is extremely time consuming when I am hypersensitive to it appears everything. But I started a few weeks ago with magnesium and trace minerals. And I have noticed slight changes with the magnesium but nothing huge. Do I need to increase the amount I am taking or is it just going to take months for my body to notice anything since I am so deficient?
If anyone reading this has had success with high doses of supplements, please let me know.
Thursday, June 12, 2014
my alinia story
So after careful consideration I decide to try alinia yet again. I have done this drug twice before in the past. and both times I never finished the dosage. I just did not react very well. So after many years have passed and this seems to be the treatment option of choice in the US, I decide to give it a go. I will have to look the dosage up with the pharmacy but think it was 500 mg twice a day for 30 days. Taking the pills is not what I remember. It is the side effects. Now I have had one doctor say to my I am hypersensitive. Not just my reaction to noise and smell but my bodies reaction to things.
What a mess. Really one of the worst of my life. By the second day I had several bouts of diarrhea. By the third day I basically could not leave the house. I am not exaggerating when I say 7,8,9 times a day with just water pouring out. Unlike other drugs I have taken where I could tell when it hit the blasto infection, this was I could tell when it hit my blood stream. I ended up not being able to work for several weeks. I lost over 20 pounds. It just kept pouring out of me. I was eating 6 to 7 times a day and I mean pounds of chicken at a time.
And in the end it only made me worse. I am convinced without a doubt that I moved the infection. I have a hot spot on my right side. Right where my small intestine meets my large intestine, And I have been told by one doctor out of NYC that he has learned from his blasto patients that is where it likes to set up camp. I have even seen it written in a few medical articles I have googled. After 15 years I knew what to expect.
And now I have 2 spots. One on the right and a new one on the left thanks to the alinia. I am convinced that all that fluid moving through picked up a part of the colony and moved it. I do have to say that the feelings are different. On the right it is cramping, dulling, aching, low radiating and on the right it is sharper and more focused.
So to anyone reading this alinia may work on some - people who just recently picked up the infection or who had no other infections on the past or who are only recently sick so there body is not so compromised and run down. That is not me.
Alinia is wicked and does nothing as far as I am concerned. I am never going near the stuff again.
What a mess. Really one of the worst of my life. By the second day I had several bouts of diarrhea. By the third day I basically could not leave the house. I am not exaggerating when I say 7,8,9 times a day with just water pouring out. Unlike other drugs I have taken where I could tell when it hit the blasto infection, this was I could tell when it hit my blood stream. I ended up not being able to work for several weeks. I lost over 20 pounds. It just kept pouring out of me. I was eating 6 to 7 times a day and I mean pounds of chicken at a time.
And in the end it only made me worse. I am convinced without a doubt that I moved the infection. I have a hot spot on my right side. Right where my small intestine meets my large intestine, And I have been told by one doctor out of NYC that he has learned from his blasto patients that is where it likes to set up camp. I have even seen it written in a few medical articles I have googled. After 15 years I knew what to expect.
And now I have 2 spots. One on the right and a new one on the left thanks to the alinia. I am convinced that all that fluid moving through picked up a part of the colony and moved it. I do have to say that the feelings are different. On the right it is cramping, dulling, aching, low radiating and on the right it is sharper and more focused.
So to anyone reading this alinia may work on some - people who just recently picked up the infection or who had no other infections on the past or who are only recently sick so there body is not so compromised and run down. That is not me.
Alinia is wicked and does nothing as far as I am concerned. I am never going near the stuff again.
Thursday, May 8, 2014
where does the time go ( maybe better titled the waiting game)
I think one of the side effects of having this gi infection is the waiting game.I spend a fair amount of time everyday waiting for chicken to cook. If I do the math, and being an engineer I am always cranking out some kind of calculation, I eat minimum 4 times a day and a much as 6. 4 batches of chicken (2-4 bone in chicken breast pieces) in the oven at 36 minutes a piece is approximately 2 and half hours waiting on the chicken to cook. Then there is the roasting time. See I do not take the chicken right out of the oven; I leave it in to continue cooking and self basting. It ends up being juicy and tender and much more palatable. I like to let a minimum of 20 minutes pass but prefer at least 40 and have left it up to an hour and a half before eating it. If I use the average time of 30 minutes times 4 batches a day that is another 3 hours. So I spend at least 4.5 hours waiting on chicken every day.
And while I do not tend to write anything about the uncouth things associated with this horrible disease, let's get real. It is a parasite that takes over your colon, so yes there is a fair amount of time spent in the restroom.
And then let's add in the shopping for the chicken. When you need an excessive amount of something it makes sense to try and buy in bulk. This is where the BJ's membership comes in handy. I can buy large quantities at reasonable prices. So there are at least 2 and sometimes 3 trips to BJ's a week. I know when the chicken order comes in and plan the trips accordingly. The closest location is actually very close and takes about 15 minutes. If the shopping time is added in (and I can get in and out with chicken in 10 minutes if it is a chicken only run) I would estimate a minimum of 1.5 hours shopping for chicken. This does not include the grocery store runs for the rest of the family.
I spend a lot of time waiting for an epsisode, attacks, trigger, hours of being sick to pass. I literally just hang on and wait for the symptoms to subside. I am not sure how to crank out a number for that but I think at least an hour a day should be in the sum.
Now I would suggest considering the time spent waiting to see if something is going to hit me. I have a 4 hour trigger point. I know it sounds crazy, but I have learned over years (and I mean years as I am not going on 16 with the mother of all infections) that it takes my system 4 hours to process and move something I ate through to the point where the bulk of the infection is located. This is where the small colon meets the large. And while it is not accurate to add all these 4 hour time events up since most of the time I use the time between, the point is more time spent waiting.
Add in the time spent waiting in doctor's office. Account for the time spent waiting to see how a drug will effect me. Include the time spent waiting to see how a drug, or herb, or supplement will effect the bug.
Time.
And while I do not tend to write anything about the uncouth things associated with this horrible disease, let's get real. It is a parasite that takes over your colon, so yes there is a fair amount of time spent in the restroom.
And then let's add in the shopping for the chicken. When you need an excessive amount of something it makes sense to try and buy in bulk. This is where the BJ's membership comes in handy. I can buy large quantities at reasonable prices. So there are at least 2 and sometimes 3 trips to BJ's a week. I know when the chicken order comes in and plan the trips accordingly. The closest location is actually very close and takes about 15 minutes. If the shopping time is added in (and I can get in and out with chicken in 10 minutes if it is a chicken only run) I would estimate a minimum of 1.5 hours shopping for chicken. This does not include the grocery store runs for the rest of the family.
I spend a lot of time waiting for an epsisode, attacks, trigger, hours of being sick to pass. I literally just hang on and wait for the symptoms to subside. I am not sure how to crank out a number for that but I think at least an hour a day should be in the sum.
Now I would suggest considering the time spent waiting to see if something is going to hit me. I have a 4 hour trigger point. I know it sounds crazy, but I have learned over years (and I mean years as I am not going on 16 with the mother of all infections) that it takes my system 4 hours to process and move something I ate through to the point where the bulk of the infection is located. This is where the small colon meets the large. And while it is not accurate to add all these 4 hour time events up since most of the time I use the time between, the point is more time spent waiting.
Add in the time spent waiting in doctor's office. Account for the time spent waiting to see how a drug will effect me. Include the time spent waiting to see how a drug, or herb, or supplement will effect the bug.
Time.
Tuesday, April 22, 2014
ode to zucchini
oh how I love you so
ok i'm not really going to write a sonnet but I do want to give it just praise. and maybe that is the type of thing you do when jolted awake at 4am knowing this is the beginning of a flair. I might have mentioned before that I hate the hunger. zucchini is my friend. I used to say pumpkin, but I do not always tolerate it. zucchini is easy to cook, is ready fast and adds volume to my meals of chicken. Now I realize it is not alot, but it helps.
I like it cooked all the way through, almost mushy. I slice it in very think slices and steam it on the stove top until I like the way a fork pierces the pieces.
I've spent alot of time these past few months searching for zucchini to buy. thanks goodness we are coming out of winter because for the most part the flavor is back. and a shipment at whole foods is to thanks for that. I was down there buying chicken and they had teh most wonderful perfect looking assortment. I took a change and filled 2 veggie bags. Maybe 20 zucchini altogether. they were awesome and so started by cycle of including zucchini with most of my meals. I took the trip back to whole foods, which by the way is not that far maybe 25 minutes because of lights and what not, but to make a quick trip to the grocery store it is way too far, and this next batch stunk. I went back many times and even started learning the better brands, which ones were organic and where they were all grown.
Then on a whim I bought a bunch from the Acme on the corner and they too were flavorful. I have been buying half if not most of what they put on the shelf ever since. and not all of the shipments have been good, but for the most part they have all been edible.
ok i'm not really going to write a sonnet but I do want to give it just praise. and maybe that is the type of thing you do when jolted awake at 4am knowing this is the beginning of a flair. I might have mentioned before that I hate the hunger. zucchini is my friend. I used to say pumpkin, but I do not always tolerate it. zucchini is easy to cook, is ready fast and adds volume to my meals of chicken. Now I realize it is not alot, but it helps.
I like it cooked all the way through, almost mushy. I slice it in very think slices and steam it on the stove top until I like the way a fork pierces the pieces.
I've spent alot of time these past few months searching for zucchini to buy. thanks goodness we are coming out of winter because for the most part the flavor is back. and a shipment at whole foods is to thanks for that. I was down there buying chicken and they had teh most wonderful perfect looking assortment. I took a change and filled 2 veggie bags. Maybe 20 zucchini altogether. they were awesome and so started by cycle of including zucchini with most of my meals. I took the trip back to whole foods, which by the way is not that far maybe 25 minutes because of lights and what not, but to make a quick trip to the grocery store it is way too far, and this next batch stunk. I went back many times and even started learning the better brands, which ones were organic and where they were all grown.
Then on a whim I bought a bunch from the Acme on the corner and they too were flavorful. I have been buying half if not most of what they put on the shelf ever since. and not all of the shipments have been good, but for the most part they have all been edible.
Monday, March 10, 2014
today's food fantasy
Yesterday was macaroni salad. I will even eat it with celery so I can make sure I get something alkalizing in the serving. Elbow noodles, specific carbohydrate homemade mayo, mustard, celery, just a few red onion pieces.
Today frozen yogurt. Again specific carbohydrate yogurt. Really just good old fashioned vanilla. Love the taste of vanilla. Or so I remember I did 15 years ago.
Today frozen yogurt. Again specific carbohydrate yogurt. Really just good old fashioned vanilla. Love the taste of vanilla. Or so I remember I did 15 years ago.
Sunday, March 9, 2014
alinia continued
Well,
I ate one less meal yesterday which meant I did not take the evenings dose until 10pm where I had been taking it around 8:30 all the preceding days. Not sure if that is why the rough night but more likely due to cramps. Being on a 30 day round it was going to happen. And I have been up mostly all night because of them. Which means my body never really went into that sleep state where things could slow down. This is a rough drug, for me anyway. Not alot of breaks in the side effects. I sit here typing now at 5:13 am waiting for the chicken to cook. I am planning on sleeping off and on all day tomorrow.
It's all part of a grander plan that is coming true....a verse from a rascall flatts song that has shifted into my mantra. the purple flame, die blasto die and I will have a healthy colon have all been a part.
Just realized we "sprang forward". Daylight savings time is in effect. I kept looking at the computer clock thinking something was off with the oven clock. Yet another sign that things move forward and that change is on the horizon.
I ate one less meal yesterday which meant I did not take the evenings dose until 10pm where I had been taking it around 8:30 all the preceding days. Not sure if that is why the rough night but more likely due to cramps. Being on a 30 day round it was going to happen. And I have been up mostly all night because of them. Which means my body never really went into that sleep state where things could slow down. This is a rough drug, for me anyway. Not alot of breaks in the side effects. I sit here typing now at 5:13 am waiting for the chicken to cook. I am planning on sleeping off and on all day tomorrow.
It's all part of a grander plan that is coming true....a verse from a rascall flatts song that has shifted into my mantra. the purple flame, die blasto die and I will have a healthy colon have all been a part.
Just realized we "sprang forward". Daylight savings time is in effect. I kept looking at the computer clock thinking something was off with the oven clock. Yet another sign that things move forward and that change is on the horizon.
Monday, February 24, 2014
mantras
day 10
lemon juice in warm water
rebounding
die blasto die
liquid minerals
juicing
die blasto die
heating pad on abdominal area
I will have a healthy colon
I will heal
I will have a healthy colon
I can survive this
If people survive chemo I can survive this
count down calendar
I will have a healthy colon
lemon juice in warm water
rebounding
die blasto die
liquid minerals
juicing
die blasto die
heating pad on abdominal area
I will have a healthy colon
I will heal
I will have a healthy colon
I can survive this
If people survive chemo I can survive this
count down calendar
I will have a healthy colon
Wednesday, February 19, 2014
morning 5 on alinia
So Life if Crazy...and not exactly in a good way. I'll come back later maybe maybe not to explain my last 2 and half months. But it has lead me to the point of deciding I am not longer going to cohabit with the mother of a bug. Really this thing destroys lives and it amazes me how little the medical community is really recognizing this.
So what to do what to do??? The best possible options out there are the Australian protocol and the brand name drug Alinia. I am going to call it NTZ from here on out. I actually tried this drug back before it was available in the US but you could get it through daair (not even sure anymore if that is the correct acronym for the agency). Anyway in that community it got nick named NTZ - easier to say, type so going with it.
What a poison it is. Horrible side effects. I keep telling my self if cancer patients can make it through chemo I can make it through this. I am having a hard time working. Actually I am having a hard time leaving the house. Actually I am having a hard time leaving the bathroom.
Had lymphatic drainage massage on Monday and Monday nights dose side effect were lessened.
Just now decided my manta over this course - Die Blasto Die.
Die Blasto Die
Die Blasto Die
Die Blasto Die
So what to do what to do??? The best possible options out there are the Australian protocol and the brand name drug Alinia. I am going to call it NTZ from here on out. I actually tried this drug back before it was available in the US but you could get it through daair (not even sure anymore if that is the correct acronym for the agency). Anyway in that community it got nick named NTZ - easier to say, type so going with it.
What a poison it is. Horrible side effects. I keep telling my self if cancer patients can make it through chemo I can make it through this. I am having a hard time working. Actually I am having a hard time leaving the house. Actually I am having a hard time leaving the bathroom.
Had lymphatic drainage massage on Monday and Monday nights dose side effect were lessened.
Just now decided my manta over this course - Die Blasto Die.
Die Blasto Die
Die Blasto Die
Die Blasto Die
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