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
Monday, July 29, 2013
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
Tuesday, July 2, 2013
More Whipworm friends and continuing to feel better
July 2:
Last night I consumed my third dose of Whipworm, shooting back 200 ww ova down the hatch! Below is a picture of the vial they come in. It's very small, about the size of my pinky. The first two times I drank the ww ova my stomach felt a little unsettled immediately after, but I didn't really experience anything this time and what's even more exciting is that I actually feel pretty good this morning.
.JPG)
I woke up really early (as I have been doing with the stupid prednisone which makes it difficult to sleep) and would normally have to go to the bathroom right away. However, this morning I was able to hold it and go back to sleep which is something that I am rarely able to do because as soon as I wake up I experience tremendous urgency. I see this as a small success, and hope to have more days like today. As I posted previously, mid July (which will be almost 50 days since I inoculated) is typically the time when people hosting helminths start to experience some good effects from the HW, and now that I have about 400 WW I should start to notice some of the benefits of both in late July/ early August. That's it for now, thanks for reading!!
-Amy
Last night I consumed my third dose of Whipworm, shooting back 200 ww ova down the hatch! Below is a picture of the vial they come in. It's very small, about the size of my pinky. The first two times I drank the ww ova my stomach felt a little unsettled immediately after, but I didn't really experience anything this time and what's even more exciting is that I actually feel pretty good this morning.
I woke up really early (as I have been doing with the stupid prednisone which makes it difficult to sleep) and would normally have to go to the bathroom right away. However, this morning I was able to hold it and go back to sleep which is something that I am rarely able to do because as soon as I wake up I experience tremendous urgency. I see this as a small success, and hope to have more days like today. As I posted previously, mid July (which will be almost 50 days since I inoculated) is typically the time when people hosting helminths start to experience some good effects from the HW, and now that I have about 400 WW I should start to notice some of the benefits of both in late July/ early August. That's it for now, thanks for reading!!
-Amy
Subscribe to:
Posts (Atom)