This will be a short post.... but again, this has been a glorious week! I'm still having solid stools, and almost not cramping, mucus, or urgency. The only difference between my current bowel movements and what I remember them to be before I got sick is that when I have to go, I have to go soon (like within 1 or 2 minutes -- which is a great improvement over the 5 second dash to the toilet I was doing a couple weeks ago). And, I have a little bit of mucus and a little bit of cramping sometimes, but not always.
I'm down to 10mg daily of prednisone. Each time I drop my dose, I get a little blood in my stool for a couple of days, but then it goes away.
I'm doing GREAT!
My little friends are helminths! Helminthic therapy is the controlled introduction of small doses therapeutic intestinal parasites for the purpose of modulating the human autoimmune system. This blog tracks my progress, starting with my inoculation on May 18, 2011 at the Worm Therapy Clinic in Tijuana, Mexico.
Wednesday, June 8, 2011
Wednesday, June 1, 2011
Week 2
June 1, 2011
This is the end of Week 2 and what a wonderful week this has been! I have been having solid stools, and almost non-existent cramping, AND over the last two weeks I have been able to drop my prednisone from 25mg per day, down to 15mg per day!
I've had a couple small episodes of gasiness or bloating, but otherwise, I'm doing better than I have in 6 months.
I'm told by other helminthic users that this is called the "worm bump" and that it is temporary. The "worm bump" is a temporary decrease in disease symptoms while the little baby wormies are getting settled in. At about 30 days, I should expect the "worm flu." That would be when the worms are maturing and my body starts to be unhappy about that....
However, some people turn out to be what we call "super responders." They are people who just get well quickly and easily on this therapy. I'm hoping to be one of those. :-)
If not, I'm told to expect a slow improvement over about 6 months from the time "worm flu" hits.
This is the end of Week 2 and what a wonderful week this has been! I have been having solid stools, and almost non-existent cramping, AND over the last two weeks I have been able to drop my prednisone from 25mg per day, down to 15mg per day!
I've had a couple small episodes of gasiness or bloating, but otherwise, I'm doing better than I have in 6 months.
I'm told by other helminthic users that this is called the "worm bump" and that it is temporary. The "worm bump" is a temporary decrease in disease symptoms while the little baby wormies are getting settled in. At about 30 days, I should expect the "worm flu." That would be when the worms are maturing and my body starts to be unhappy about that....
However, some people turn out to be what we call "super responders." They are people who just get well quickly and easily on this therapy. I'm hoping to be one of those. :-)
If not, I'm told to expect a slow improvement over about 6 months from the time "worm flu" hits.
Wednesday, May 25, 2011
Week 1
Today marks the beginning of Week 2. This last week, (with the exception of one BM of diarrhea) has been pretty uneventful. And from what others with IBD have written, I wouldn't expect much to happen related to "my little friends" just yet. :-)
I have had an increase in mucus and gas, but otherwise, no changes.
The big thing for me this week is that the side effects of the prednisone got so bad, I decided to try and cut back on my dose again. Two months ago I was on 40mg daily with instructions from my GI to cut back once per week as much as I can. I made it down to 25mg per day, but twice I tried to reduce to 20mg and both times got increased cramping and bloody diarrhea within two days.
Since then (about 6 weeks at 25mg), the prednisome has caused 30 lbs of weight gain since January, major "moon-face", swelling in my legs and ankles, joint pain, tooth sensitivity, mood swings, general weakness and severe headaches.(BY severe, I mean feeling like a spike was driven through my head for 24 hours!)
I decided to take the prednisone mostly because it enabled me to work. But at this point the side effects where getting so bad it was interfering with my ability to work! So, I decided again to try and cut back, again.
This morning is the third day on just 20mg and though I have had an increase in the number of BMs per day and they are a little looser, I have had no increase in cramping, no diarrhea and no blood.
So, if there is such a thing as a "worm bounce" for IBD patients... maybe that's what I'm having. :-)
I have had an increase in mucus and gas, but otherwise, no changes.
The big thing for me this week is that the side effects of the prednisone got so bad, I decided to try and cut back on my dose again. Two months ago I was on 40mg daily with instructions from my GI to cut back once per week as much as I can. I made it down to 25mg per day, but twice I tried to reduce to 20mg and both times got increased cramping and bloody diarrhea within two days.
Since then (about 6 weeks at 25mg), the prednisome has caused 30 lbs of weight gain since January, major "moon-face", swelling in my legs and ankles, joint pain, tooth sensitivity, mood swings, general weakness and severe headaches.(BY severe, I mean feeling like a spike was driven through my head for 24 hours!)
I decided to take the prednisone mostly because it enabled me to work. But at this point the side effects where getting so bad it was interfering with my ability to work! So, I decided again to try and cut back, again.
This morning is the third day on just 20mg and though I have had an increase in the number of BMs per day and they are a little looser, I have had no increase in cramping, no diarrhea and no blood.
So, if there is such a thing as a "worm bounce" for IBD patients... maybe that's what I'm having. :-)
Sunday, May 22, 2011
My Inoculation!
Prior to traveling to the Worm Therapy clinic, I filled out an extensive patient history form, and took some blood tests and sent the results to Dr. Llamas and Garin. We discussed my case at length and Dr. Llama developed a recommended treatment protocol.
On Tuesday, May 17th, 2011 I boarded a 7pm flight to Colorado. Then I hopped a connecting flight to San Diego. I got into the hotel (Days Inn) around 11pm, but couldn't sleep right away because I was excited about my trip to Mexico the next morning. Luckily, I brought a really good book!
(By the way, I highly recommend Expedia. I flew round trip from Atlanta to San Diego for $300, and paid only $60 for my hotel.)
In the morning, Garin Aglietti picked me up at my hotel and we drove to the clinic in Tijuana. Garin is very friendly and likable. We chatted about everything from scientific theory related to helminthic therapy to the natural beauty of San Diego. Despite stories I'd heard about the crazy driving habits in Mexico, I found the drive less stressful that an average day among the crazy, aggressive drivers here in Atlanta.
Once at the clinic, I met Dr. Llamas. Dr. Llamas is a sweet and caring man. He talked with me for about an hour about my medical history. He is also a holistic doctor and talked with me about my life history, psychology, emotions, diet, and more. He did a physical exam, and we discussed the treatment protocol he was recommending for me.
Then we did the inoculation. I was surprised that i didn't have any last minute questioning of myself. I had read enough that I was completely convinced this treatment will be beneficial and if by any chance I have a negative reaction, my little friends would be easy to kill.
I got 10 hookworm given to me on bandage. And 200 whip worm. The whipworm ova where pipetted onto my tongue by Dr. Llamas and chased down with a little Gatoraide. the hookworm burrowed into the skin of my upper arm from the bandage.
I've heard others say it itches a great deal, but I hardly felt much itch. At the time, however, I had a bit of poison ivy on my other arm, so maybe I'm just comparing. So I can honestly say that compared to poison ivy, hookworm hardly itches at all.
Garin and Dr. Llamas kept me under observation for about 45 mins. to make sure I wasn't going to have a rare but possible severe reaction.
We then heard that the line of cars re-entering the States was really short, so I gave Dr. Llamas a hug, thanked him, and Garin and I jumped into the car and headed back. Garin and I had lunch (I think we broke the record for the most sushi ever consumed at one sitting!) and chatted about many different things.
My flights back we a little stressful. Due to being a struggling graduate student, I grabbed a couple red-eyes home rather than pay for another night in a hotel. I did a lot of sleeping sitting up in the chairs of the boarding areas. They pack people into planes so tightly now, there was no sleeping to be done on the planes. But I still had my great novel, "The Help" by Kathryn Stockett.
By the time I got back I was exhausted, but feeling the promise of this fabulous new therapy and looking forward to being able to get off of prednisome with all it's nasty side effects. Due to the prednisone, I've gained 30 lbs. since January. My face and ankles are terribly bloated. I'm starting to get acne. and I feel jittery, my teeth are now sensitive to cold drinks, and I have mood swings.
Helminthic Therapy often takes months to take effect, but I'm hoping to get the positive effects soon enough to get off the prednisone before my hair starts to fall out! :-)
On Tuesday, May 17th, 2011 I boarded a 7pm flight to Colorado. Then I hopped a connecting flight to San Diego. I got into the hotel (Days Inn) around 11pm, but couldn't sleep right away because I was excited about my trip to Mexico the next morning. Luckily, I brought a really good book!
(By the way, I highly recommend Expedia. I flew round trip from Atlanta to San Diego for $300, and paid only $60 for my hotel.)
In the morning, Garin Aglietti picked me up at my hotel and we drove to the clinic in Tijuana. Garin is very friendly and likable. We chatted about everything from scientific theory related to helminthic therapy to the natural beauty of San Diego. Despite stories I'd heard about the crazy driving habits in Mexico, I found the drive less stressful that an average day among the crazy, aggressive drivers here in Atlanta.
Once at the clinic, I met Dr. Llamas. Dr. Llamas is a sweet and caring man. He talked with me for about an hour about my medical history. He is also a holistic doctor and talked with me about my life history, psychology, emotions, diet, and more. He did a physical exam, and we discussed the treatment protocol he was recommending for me.
Then we did the inoculation. I was surprised that i didn't have any last minute questioning of myself. I had read enough that I was completely convinced this treatment will be beneficial and if by any chance I have a negative reaction, my little friends would be easy to kill.
I got 10 hookworm given to me on bandage. And 200 whip worm. The whipworm ova where pipetted onto my tongue by Dr. Llamas and chased down with a little Gatoraide. the hookworm burrowed into the skin of my upper arm from the bandage.
I've heard others say it itches a great deal, but I hardly felt much itch. At the time, however, I had a bit of poison ivy on my other arm, so maybe I'm just comparing. So I can honestly say that compared to poison ivy, hookworm hardly itches at all.
Garin and Dr. Llamas kept me under observation for about 45 mins. to make sure I wasn't going to have a rare but possible severe reaction.
We then heard that the line of cars re-entering the States was really short, so I gave Dr. Llamas a hug, thanked him, and Garin and I jumped into the car and headed back. Garin and I had lunch (I think we broke the record for the most sushi ever consumed at one sitting!) and chatted about many different things.
My flights back we a little stressful. Due to being a struggling graduate student, I grabbed a couple red-eyes home rather than pay for another night in a hotel. I did a lot of sleeping sitting up in the chairs of the boarding areas. They pack people into planes so tightly now, there was no sleeping to be done on the planes. But I still had my great novel, "The Help" by Kathryn Stockett.
By the time I got back I was exhausted, but feeling the promise of this fabulous new therapy and looking forward to being able to get off of prednisome with all it's nasty side effects. Due to the prednisone, I've gained 30 lbs. since January. My face and ankles are terribly bloated. I'm starting to get acne. and I feel jittery, my teeth are now sensitive to cold drinks, and I have mood swings.
Helminthic Therapy often takes months to take effect, but I'm hoping to get the positive effects soon enough to get off the prednisone before my hair starts to fall out! :-)
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