depression

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Misery X 2

The last few weeks have been really hard.  Living with 3 small rectal abscesses, fevering for 10 days, night sweats, diarrhea.  I’m having major electrolyte issues; had to go into the infusion center 2 days ago for IV fluids and magnesium which helped the heart palpitations, but they started right up again yesterday, all day.  Had my husband give me an IM magnesium shot, but it didn’t help, so I don’t know what’s up.

I’ve got the intestiphage.  (Bacteriophage therapy) I started on it yesterday.   It’s imported from Georgia, and targets all of the most common intestinal bacterial infections, but just the aerobic ones.  The likelihood of the abscess being only aerobic bacteria is low, so there’s a good chance it won’t work.  I took 2 oral doses yesterday and one I put rectally.  I’ll do this for another 2 days, but if I have no improvement, then it looks like I’ll need antibiotics.

I’m advised to start IV antibioitics, then do Flagyl/Cipro for OVER A MONTH!  My GI wants me to start on Cimzia after the infection has cleared since my rectum and sigmoid are so inflamed.

The worms are going to go into hibernation; most find that egg production ceases and efficacy is lost while on antibiotics.  I haven’t even gotten efficacy, so…  I guess I’m at the end of the worm experiment for now.  Perhaps if I can get stable enough on antibiotics and Cimzia, I can try them again, maybe whipworms too since they help the colon more.

Sorry for the bad news.  This worm journey may have come to an end.  🙁

UPDATE:  Had to go to the ER with a fever of 103 last night and major dehydration/ heart palpitations.  Started IV Flagyl and pipericillin.  Start oral antibiotics for at least a month.  Will probably have to try Cimzia to keep me from flaring from the antibiotics.

Week 7

Fever broke after 3 days.  No night sweats the last few nights.  Now I just have diarrhea.

When, oh when, do the good times start?  Blessed (or f$^*ing, depending on my state of mind) worms, I need some relief.

Well, happy New Year to all!  May you be blessed with a balanced immune system, be able to eat anything, have perfect, solid bowel movements every day for the rest of your life, be cancer free, and not have to make choices about dangerous medications.

And never need another colonoscopy again.

And for those of you who have not obtained this, may you all wake up one day soon in wonderful health, slowly forgetting the nightmare that is now behind you.

Until then, I will plant sweet peas.  Nothing like a sprout to remind you life continues.  If I were dead tomorrow, they would still bloom in the spring.

Unless the slugs or chickens eat them.

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.

Just did another egg count.  Only 3 eggs total in both grids = 150 epg

New worms haven’t matured yet, damn it.

My rectum is the worst it has ever been, or the worst that I can remember.  I’ve got a huge painful external hemmeroid that’s killing me.  Inside is bloody and sore too.  I’ve done 3 rectal foam enemas so far; no miracles yet.

At least the fever and night sweats are over.  I don’t feel like I have the flu anymore, now I just feel like I have bad colonic/anal Crohn’s.  Mucus is a constant.  I can’t go Christmas shopping without being wet, going to the bathroom multiple times, cleaning up, only to have more mucus come out an hour later.  Can I just say I am so sick of this symptom?

I’m tired of waiting for worms to work.  These last 8 months have sucked.  What happened to the 15 hookworms I got in June?  How many survived?  What the hell are they doing to help?

My magnesium deficiency is pretty bad.  Hands and lips are going slightly numb.  I’m twitching all over.  I can’t do anything without getting an immediate cramp.

I’m starting to feel hopeless; 2 years of magnesium deficiency with nothing that helps long term.  It gets better only to worsen again.  I’ve tried every oral supplement there is, shots, IV’s, nothing.  Will I just have to suffer with this forever?  What about the state of my heart?  How much are the worms contributing?

My anus I’m afraid of losing.  Or having it scar to oblivion.  3 years on hookworms and I’m as bad as ever.  So much for the early excitement of finding “the cure”.

Hopefully, these new worms will mature in the next few weeks and I’ll start feeling hopeful again.  I don’t know what combination of worms and species and dosage will work for me, if it’s too late for me to heal anyway, if I should just give up and try a new biologic, or what.

I guess I’ll wait a few more weeks and see what happens.  Merry Christmas and all that.  I’m still eating chocolate.  Gotta find happiness somewhere, even if it ultimately contributes to misery.

C’mon hookworms.  I need some relief.  I’ve suffered long enough.

For what it’s worth.  I only did one stool sample, but not very many eggs.  5 eggs in both grids = 250 epg.

I’ll do another one next week.  I want to see when these new worms mature.

Night sweats every night, fever from 99 – 100.4 every day.  No more solid bowel movements, more mucus and blood.

Magnesium deficiency is worse; more twitches, constant cramping in my toes and calves, and some anxiety.  Sigh.

C’mon worms, work!  I’m running out of patience, and my suffering quota is filled.

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