Fever (99.8 – 101), night sweats, aches in joints, more twitching and a little anxiety. Some solid BM’s, going about twice a night, another 3 times in the day. Doing steroid foam for the rectum; sort of seems to help?
Luckily my fever over a week ago went away, and I felt well enough to shop for Christmas presents. I pulled a Grandma cart around (which I do often), but the next day, my muscles were so sore, it felt like I had done something huge. I’ve been getting this a lot with this latest infection; extremely sore muscles from not much exersion. I’m still extremely sore almost a week later, and now an old rib injury is acting up. Joy.
My husband has felt kind of crappy this week too. Looser stools, much more frequent, he often feels like he has to recover after a BM, sort of sits and sleeps sometimes. He’s also had the muscle soreness, and what he describes as a lack of “oomph” when he’s bicycling. Usually he can push himself through things, now he can’t. But it’s very up and down; some days he has a good ride, other days he’s way slower.
I hope this is my immune system’s last stand. I am at the end of my rope of suffering. The worms don’t seem like such a panacea anymore. I infected with 15 in June, suffered so much I went on Prednisone; I was feeling better around week 9 when the worms matured, but this is when I tried TSO and caused a severe regression, which I had to go on Prednisone to curtail, but it didn’t help that much. I’m down to 5 mg. and I’ve had lots of mucus, rectal pain, blood, it isn’t good. But I’ve done enough Prednisone this year.
Christmas was lovely. I woke up and had a solid bowel movement! I felt good; we had a happy day with the family and had friends over. The next day we were supposed to drive to my father-in-law’s house, but I felt really bad, and that’s when I found out I was fevering.
Is it the worms? Is it the flu? Or is it an abscess, did the fistula open?
The magnesium deficiency has worsened significantly in the last 2 weeks. I’m still doing the baths, though I ran out of my magnesium chloride and switched to a lesser amount of magnesium sulphate (epsom salts). I think the chloride works better. I’m getting more today, so may increase my baths to 3 X a day, or do a foot soak or something.
I’m less impressed with the worms after these last 6 months. Now I’m not sure if they’re even going to work longterm. I’ve heard a few accounts of long term users who lost efficacy, despite enough worms. Still waiting to see if their new, higher dose worked to reverse things, but this wasn’t because of a lack of worms in the system, which scares me.
Will it be like everything else, that the immune system learns to override the worms’ effects? I wish we had more people keeping notes and logging in longterm so I can know if this is an anomoly or not.
The suffering has been going on for so long, and has become too much. Magnesium deficiency causes depression and anxiety, but so does working with a therapy that few people know about, that we don’t have all the answers for, and causes significant side effects before you even know if it’s going to work. If I could do it all over again, I wish I didn’t do the trickle doses, just added 10 worms when needed, every 6-9 months, didn’t try the TSO, I wish I reinfected last March when I had 0 inflammation.
If I’m not better by January, if these new worms fail to bring me to a better place, I guess it’s time to look at the drugs again. One of my closest friends died of cancer a few months ago; her husband died 3 months later; he was on Remicade, got colon cancer, had the surgery and had a 90% remission rate, decided to go on oral chemo to get an extra 2%, and died 3 months later. I don’t know for sure if it was drug related at all, but kind of suspicious. I know Cimzia or Solari may help, but they also have a high side effect profile. Lymphoma? Maybe I should try bee sting therapy instead?
Anyway, not sure how to live through the fear anymore. I know the worms did wonders, but they’re also depleting me of magnesium and possibly iron; I will try a better, more nutrient rich diet to see if I can curtail the negatives. I hope my egg count matures soon; I usually start feeling better then.
Sorry for the depressing accounts. Crohn’s disease is getting to be too much for me lately. If I didn’t have children, I don’t think I’d be here anymore; when you’re up every night, can’t go for a walk without mucus coming out, and feel tired and defeated. When your Vit D levels drop despite supplementation and your magnesium levels can’t return to normal despite heroic effort, what do you do?
How do I keep myself motivated to carry on? I had to drop my business this Fall due to sickness; everything I start I have to stop. Couldn’t play music on Tuesday, can’t drink this New Years, if I’m even well enough to go out. I wish I were deeply religious; I think that would help.
Happy New Year to all. May your journey be much easier then mine.
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