Dec. 28, 2013
I expected many more ups and downs with this last inoculation, and the past week I have experienced some downs. I have been extremely exhausted but am not doing anything to exhaust myself, and am experiencing more of the old Crohn's like symptoms, especially pain, bloating and diarrhea. Once again, this may be my actual disease, or side effects associated with the HW or a nice combination of both. Around the holidays we all tend to binge on food a little bit, and while most people are concerned about gaining weight, I worry more about what this will do to my digestive system and usually it wreaks havoc.
In any event, I'm feeling slightly better today, and hope to continue to improve. I am also looking forward to getting my next WW dose. There is a new dosing regiment for the whipworm, where you take it more frequently in smaller doses. I think there is a lot of promise with this schedule. I'll try and post something at the end of January. Happy New Year!
-Amy
Saturday, December 28, 2013
Sunday, December 8, 2013
50 Hookworm, Big Rash, Feeling Good
12/8/2013
I am cautiously excited about my most recent hookworm dose as the past couple of days, gut wise, I have felt pretty good! I inoculated on Tuesday evening, felt the itch immediately and have a very intense rash (these are all good things.)
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I have had less urgency going to the bathroom and my stomach has felt pretty good most mornings (which is rare.) I also seem to have more energy and my sense of smell for some reason is improved (not that it was bad before but now it is heightened)
As I said, I am cautiously excited because I want to keep my hopes in check, but feel like this may be the start of some more noticeable improvement
I was thinking the other day that while I haven't seen really obvious changes, there have been smaller less noticeable improvements that have sort of snuck up on me such as: 1) The fact that I haven't needed to take prednisone since early August (and was taking it most of the summer.) 2) I have slightly less urgency in the mornings, and 3) I am able to run regularly with few problems. While I am hoping to eventually feel a lot better than I feel now, I should take the time to notice and appreciate these smaller signs of improvement because they still count.
Thanks for reading!
I am cautiously excited about my most recent hookworm dose as the past couple of days, gut wise, I have felt pretty good! I inoculated on Tuesday evening, felt the itch immediately and have a very intense rash (these are all good things.)
I have had less urgency going to the bathroom and my stomach has felt pretty good most mornings (which is rare.) I also seem to have more energy and my sense of smell for some reason is improved (not that it was bad before but now it is heightened)
As I said, I am cautiously excited because I want to keep my hopes in check, but feel like this may be the start of some more noticeable improvement
I was thinking the other day that while I haven't seen really obvious changes, there have been smaller less noticeable improvements that have sort of snuck up on me such as: 1) The fact that I haven't needed to take prednisone since early August (and was taking it most of the summer.) 2) I have slightly less urgency in the mornings, and 3) I am able to run regularly with few problems. While I am hoping to eventually feel a lot better than I feel now, I should take the time to notice and appreciate these smaller signs of improvement because they still count.
Thanks for reading!
Monday, August 12, 2013
40 more Hookworm
August 12:
Last week I received (as expected) 40 hookworm organisms! Hooray! I inoculated on August 5, and felt the itch and got a nice rash.
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These are of course great things because it means that it took (technically at least.) Hopefully this inoculation "woke the worms up" from their "nap" while I was taking antibiotics, and I will start to be feeling some good effects in the next couple of weeks.
It is difficult to tell how I am doing overall because I have been under some serious stress in my life right now which undoubtedly has an impact on my symptoms and overall health. I'm trying to keep things as regular as possible. I'm excited to go on vacation on Saturday and relax by the ocean in Cape Cod... I'll post another update in the next couple of weeks, especially if I notice some good differences!
Thanks for reading!
-Amy
Last week I received (as expected) 40 hookworm organisms! Hooray! I inoculated on August 5, and felt the itch and got a nice rash.
These are of course great things because it means that it took (technically at least.) Hopefully this inoculation "woke the worms up" from their "nap" while I was taking antibiotics, and I will start to be feeling some good effects in the next couple of weeks.
It is difficult to tell how I am doing overall because I have been under some serious stress in my life right now which undoubtedly has an impact on my symptoms and overall health. I'm trying to keep things as regular as possible. I'm excited to go on vacation on Saturday and relax by the ocean in Cape Cod... I'll post another update in the next couple of weeks, especially if I notice some good differences!
Thanks for reading!
-Amy
Monday, July 29, 2013
Maintaining...
July 29:
It has been a while since my last post, but I have since ended my course of antibiotics- which is a wonderful thing- and I am ANXIOUSLY awaiting the arrival of my next HW dose. I am especially anxious because while taking the antibiotics I may have harmed my worm friends, and by inoculating soon after my course of antibiotics ends will hopefully "wake them up."
According to the literature on Hookworm inoculation, antibiotics can create a period where hosts may lose some effectiveness from the worms. Since I don't feel that at this point I have really gained much effectiveness (although maybe a little) from the worms, I don't feel very different (good or bad). I have also been taking a lot of probiotics which may offset some of the damage to the worms, and help the overall symptoms of Crohn's. When and if people experience benefit from the worms varies greatly but I am within the time frame of when I should expect to see some benefit. I am taking into account the antibiotics which may prolong the benefits even more.
As always, I'm trying to stay positive, I'm continuing to eat healthy, exercise and I have been getting some good ol' vitamin D (sun!!) I should receive my next HW batch early next week and will update then.
Thanks for reading!
-Amy
It has been a while since my last post, but I have since ended my course of antibiotics- which is a wonderful thing- and I am ANXIOUSLY awaiting the arrival of my next HW dose. I am especially anxious because while taking the antibiotics I may have harmed my worm friends, and by inoculating soon after my course of antibiotics ends will hopefully "wake them up."
According to the literature on Hookworm inoculation, antibiotics can create a period where hosts may lose some effectiveness from the worms. Since I don't feel that at this point I have really gained much effectiveness (although maybe a little) from the worms, I don't feel very different (good or bad). I have also been taking a lot of probiotics which may offset some of the damage to the worms, and help the overall symptoms of Crohn's. When and if people experience benefit from the worms varies greatly but I am within the time frame of when I should expect to see some benefit. I am taking into account the antibiotics which may prolong the benefits even more.
As always, I'm trying to stay positive, I'm continuing to eat healthy, exercise and I have been getting some good ol' vitamin D (sun!!) I should receive my next HW batch early next week and will update then.
Thanks for reading!
-Amy
Thursday, July 18, 2013
Ups and Downs and antibiotics...
July 18:
Aside from it being extremely HOT (at least for Vermont) I have had a rough couple of days but am on the mend. I am one of the "lucky" 30 something % of people with Crohn's who get something called fistulas which are essentially an infection caused by inflammation. They are rare in the disease, however they are very difficult to get rid of. My GI and I have a pretty good system where I notify him when I feel one coming on, and he will prescribe flagyl (which causes extreme nausea, tastes metallic, and makes me gag) and a 7 day course of this usually takes care of it temporarily. I typically have a fistula flare every 6-12 months depending on how my disease is overall. For the past couple of days I have been very sedentary because I have been in too much pain to move around, which has been kind of miserable.
Yesterday I felt the beginnings of healing and while healing can be slow, it is a GREAT feeling! I'm feeling more optimistic, and hopefully will continue to get better. One other thing about flagyl a drug I hate more than prednisone, is that it makes the helminths go dormant and in some cases may kill them. From what I have read though, killing helminths is actually pretty difficult to do, and a short course hopefully-crossing my fingers- won't do to much. I spoke with my provider and he said something similar. Also, my next dose of HW is scheduled to arrive shortly after my course of antibiotics ends, so I'm hoping this will wake the worms up!
And yes, I googled "sleeping worms" for this :)
Thanks for reading!
-Amy
Aside from it being extremely HOT (at least for Vermont) I have had a rough couple of days but am on the mend. I am one of the "lucky" 30 something % of people with Crohn's who get something called fistulas which are essentially an infection caused by inflammation. They are rare in the disease, however they are very difficult to get rid of. My GI and I have a pretty good system where I notify him when I feel one coming on, and he will prescribe flagyl (which causes extreme nausea, tastes metallic, and makes me gag) and a 7 day course of this usually takes care of it temporarily. I typically have a fistula flare every 6-12 months depending on how my disease is overall. For the past couple of days I have been very sedentary because I have been in too much pain to move around, which has been kind of miserable.
Yesterday I felt the beginnings of healing and while healing can be slow, it is a GREAT feeling! I'm feeling more optimistic, and hopefully will continue to get better. One other thing about flagyl a drug I hate more than prednisone, is that it makes the helminths go dormant and in some cases may kill them. From what I have read though, killing helminths is actually pretty difficult to do, and a short course hopefully-crossing my fingers- won't do to much. I spoke with my provider and he said something similar. Also, my next dose of HW is scheduled to arrive shortly after my course of antibiotics ends, so I'm hoping this will wake the worms up!
Thanks for reading!
-Amy
Wednesday, July 10, 2013
No More Prednisone (at least for now)
July 10:
For those of you who have never taken prednisone, it is hard to explain how awful it makes you feel mentally, emotionally, physically... but now I am beginning to feel like this!
I'm still continuing to feel pretty good, even though I ate a couple small things off the diet today. Hopefully it won't set me back too much. I just went for a lovely HOT run even though it's 8 pm. which was a great end to the day. I'm also feeling really grateful for all of my friends and family who have been SO supportive during this time. It means so much to me that people continue to ask how it's going, and read my blog. THANKS EVERYONE! That's all of now!
-Amy
For those of you who have never taken prednisone, it is hard to explain how awful it makes you feel mentally, emotionally, physically... but now I am beginning to feel like this!
I'm still continuing to feel pretty good, even though I ate a couple small things off the diet today. Hopefully it won't set me back too much. I just went for a lovely HOT run even though it's 8 pm. which was a great end to the day. I'm also feeling really grateful for all of my friends and family who have been SO supportive during this time. It means so much to me that people continue to ask how it's going, and read my blog. THANKS EVERYONE! That's all of now!
-Amy
Saturday, July 6, 2013
Tapering off of prednisone and still feeling good
Saturday, July 6:
I am now down to 10 mg of prednisone, but am continuing to feel good. It feels GREAT to get off of prednisone because it truly makes me feel CRAZY!
I have been sticking to the SCD diet which I think is helping. I have been following it 100% for about three weeks now. My ultimate goal in doing the helminthic therapy is to be able to eat whatever I want (within reason) AND feel good, but I recognize that in order for the therapy to work I need to keep my symptoms under control. I have been taking probiotics every day, and am increasing the amount I take which will only continue to help. I have been running a lot and trying to drink lots of water which comes naturally when it's really hot out (as it has been.) Today and yesterday I took some allergy medication which has been shown to help with helminth side effects. It seems to be helping although I think there may be some placebo effect taking place as well. Either way, I'm just happy to be tapering and still feeling good. I will need to wait and see what the next couple of weeks bring, but by mid July I should start to notice some good benefits from the helminths. That's all for now, thanks for reading!
-Amy
I am now down to 10 mg of prednisone, but am continuing to feel good. It feels GREAT to get off of prednisone because it truly makes me feel CRAZY!
I have been sticking to the SCD diet which I think is helping. I have been following it 100% for about three weeks now. My ultimate goal in doing the helminthic therapy is to be able to eat whatever I want (within reason) AND feel good, but I recognize that in order for the therapy to work I need to keep my symptoms under control. I have been taking probiotics every day, and am increasing the amount I take which will only continue to help. I have been running a lot and trying to drink lots of water which comes naturally when it's really hot out (as it has been.) Today and yesterday I took some allergy medication which has been shown to help with helminth side effects. It seems to be helping although I think there may be some placebo effect taking place as well. Either way, I'm just happy to be tapering and still feeling good. I will need to wait and see what the next couple of weeks bring, but by mid July I should start to notice some good benefits from the helminths. That's all for now, thanks for reading!
-Amy
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