Finally, the ostomy nurse said, “Let’s wait to see what happens after you start your Crohn’s treatment meds.”  So I had my first dose of Tysabri, and it seemed to get much better.  2 weeks later, I showed it to her, and the wound was down to one site, moving towards the stoma.  Scar tissue had formed over the rest, it was finally healing.

I want to add that the pain from these little sores was intense.  I was almost off the painkillers for the surgery, but the sores started to replace their need.  I also was still having pain in the ileal-cecal area that I thought the Tysabri would get rid of.

10 days after the first Tysabri infusion, I went back to diarrhea.  (It had gone back and forth since a few months post surgery; things were slowly going downhill.)  The Tysabri gave me solid stools within a few days, and I thought, “I hate having to use such a powerful drug, but at last it’s working!”  Then the diarrhea struck, and I went back on the GAPS diet.  I was nauseous too (which had been happening more frequently too since the surgery, part of the overall decline.)  Luckily within a few days, the diet took, and I had my solid stools back, and was starting to feel more energy.  My skin also became much clearer, as I’ve had pretty bad, constant acne since I killed the hookworms and got   through the surgery.

So I went into my second infusion with high hopes.  The wound was almost gone, the ostomy nurse said I didn’t have to do anything to it, it should finally be gone in a week or so.  I was so relieved, we flew home singing.

Second infusion went by without a hitch, but within 48 hours, the pain moved from the left side to underneath the stoma, and when I went to change the bag, the old sore had healed almost all the way, but the lip of skin directly under the stoma (which was only scar tissue; never had a problem) was suddenly red, inflamed, and twice its size, and hurt like hell.

2 days after that, it had doubled again, and now it was wrapping around the rim.  The pain was unbearable, and the stoma itself was getting larger and larger, now double the size than it was supposed to be.

“I’m living in unrelenting hell,” I thought, contacted Dr. Terdiman, who always responds within minutes, no matter what time of day it is, or even if he’s on vacation.  So he got me an urgent appointment with UCSF dermatology, and I waited in agony over the weekend and called their office on Monday and encouraged them to fit me in the next day, not the end of the week like they planned.

Thing that sucks about urgent appointments at UCSF is you get the residents, and whatever doctor is overseeing them.  So I got a very nice, young doctor who looked at it, showed it to the older doctor, they both said it may be pyoderma gangrenosum, basically Crohn’s disease of the skin, so they shot me with 5 painful steroid shots, and sent me on my way.  They were going to make me wait 2 weeks, but I asked for an appointment the next week with the expert, so they squeezed me in.

The shots helped the pain for 2 days, it looked better, the stoma had shrunk.  Then 2 days after that, it was back to bad, and 2 days after that, it was even worse.

Dr. Terdiman meanwhile emails  me that he spoke with the chief of dermatology at Stanford, and they treat pyoderma with much success with either thalidomide, or IVig.  Hmmm….which to choose?  Thalidomide is so damn tempting after its reputation for grotesque birth defects!  Garin’s been theorizing for over a year that I may have an immunodeficiency on top of the autoimmunity and the treatment for that is IVig.  I have an appointment with immunologyat UCSF  in November to discuss this very thing.

So I jumped at the chance to try it, even though they use much higher doses for pyoderma, and over 4 days, so not sure what answers it would give about the immunodeficiency, but maybe it would help both the pyoderma and the Crohn’s, since clearly the Tysabri either made things 10 times worse, or didn’t make it any better.

So I come in the next week with more pain, the expert looks at it, said it’s atypical pyoderma and the dosage of shots they gave me last week were 1/4 of what they use for pyoderma.  They gave me 5 more incredibly painful shots,  prescribed 2 creams that were immunosuppressives, and said if this didn’t work, we could try IVig, but it takes at least 2 weeks for the insurance to approve it since it’s off label, if they approve it at all.

So I was sent home again, told they’d submit the paperwork and get that going, but he was confident the topical would work, and I may not need the IVig.

There’s a test to take to make sure you’re not at increased risk for blood clotting.  Which the resident didn’t write up properly, so I’m at the lab, having to call their office, figuring out which test to take.  Then I find out on Thursday that Dr. Berger hadn’t entered his notes in about our appointment, so the office didn’t submit the paperwork to insurance until then, and since it takes 3 days just to process, they wouldn’t start until next Monday.

Meanwhile, the shots had barely helped, and the cream that the resident had prescribed was at the wrong dose, and the pharmacist said the other cream didn’t come in a  cream, only the powder.  So back on the phone, got it all straightened out, and I didn’t get my topicals until 5 days after the appointment, so of course, there was very little improvement.

At this point, I’m pissed off about the IVig.  Luckily, my sister works for the #1   pharmaceutical company that uses the most IVig in the country.  So I got on the phone with them, told them my doctor had just faxed in the request, and could they do ANYTHING to speed up this process as I had now gone 2 weeks with no treatment and was desperate.  Luckily, I’m the little sister of someone important in the company, so they did their thing, and they did it fast.

These two weeks were spent mostly on my back, since the stoma is much smaller and retracted when you lie this way.  Standing up, its grotesque size and the sore underneath just made for too much pain.  And I no loner get any happiness from the opiates, so I can’t even claim they are fun anymore.

Coram pharmacy calls me back an hour later, said they got the pre-authorization, they could start IVig tomorrow, but couldn’t get a home nurse to do it over the weekend, so let’s start Monday!!  Fuck you, 2 week pre-ops.  Dr. Berger was on vacation, so I got the nice resident and my wonderful Gi to basically go over his head and authorize starting the IVig before I give the topicals another week or 2, or whatever Dr. Berger was thinking about.  He gets into the office today and I hope he doesn’t mind that the patient wasn’t going to wait his 2 weeks pre-authorization time, and I’ve got connections in high places, so the IVig is sitting in my fridge, (I love how it’s marked as “human”) and I’m drinking lots of water in preparation for the infusion today.

Will it work?  Will it help the Crohn’s?  Will it reduce or eliminate the pyoderma?

And if it does, do I try another Tysabri infusion?  I can’t say that it’s doing anything to help my bowels; I’m back to loose stools mixed in with some solid, even on the diet, I am getting nauseated a lot, and have lost 7 pounds in the last 2 weeks.

So I’m hoping IVig to the rescue.  If it can quiet things enough, I may add more hookworms in before anything else gets much worse.  I was hoping the Tysabri would control things while I upped my worm dose.  Now I’m not sure if I’m even going to be able to continue.

The gastroenterologist says the enlarged stoma is a reflection of the skin inflammation.  The dermatologist says the stoma is a reflection of the bowels inside.  I asked them to have a conversation with another, since the two experts in the field better get their advice straight, and stop confusing their patients.  It seems like the stoma is under no doctor’s jurisdiction.  Dr. Terdiman only covers the intestines inside, and knows nothing about stoma and skin care.  Dr. Berger says the Crohn’s treatment should be treating the stoma.  I guess I need a stoma doctor to treat the actual stoma…

I say, so help me God, if something doesn’t improve soon, I am really looking at the high cliffs of the Pacific Ocean longingly every time I drive up for yet another UCSF doctor’s appointment.  A little Thelma and Louise style suicide.  Just turn my wheels violently to the right at the wrong time, and weee…..no more Crohn’s disease, no more , pyoderma, misery solved.

My husband reminds me that most suicide attempts fail, and then you are left with worse problems than before.

So IVig, more worms, perhaps Tysabri or Stelara and hope.  Fingers crossed something actually works, and fast.  I’ve long past my quota of patience, I’m moved into despair.  I’d like my life back so I don’t have to take it out.  We’ll see….

So today, relucantly, I go back on antibiotics, and I guess I’ll never see what the hookworms that reside in me are going to do.

I’m going through the hoops to try Prochymal.  I have a nurse today (that I’m going to cancel) come show me how to do Cimzia.  I think I’d rather try stem cells then another biologic, since Humira only made me worse.

I went to a new naturopathic MD, Dr. Cowan in San Francisco.  He has a protocol of supplements and drugs (all of which I’ve tried), including LDN, GAPS diet, fermented turmeric, boswellia, s. boulardii, e. coli Nissle, and Biokult.  I started 3 mg. of LDN two nights ago, couldn’t sleep the first night and felt a little happier yesterday, last night was fine, no side effects.  I tried LDN in the past, got it wrongly compounded, switched to Skip’s pharmacy and seemed to get better, then I broke out in a weird rash all across my butt, it was thought I was allergic to sulfasalazine so I stopped that, made a yogurt making mistake, and flared miserably.  So I came off the LDN to go on Prednisone.  I tried it again later and it didn’t seem to help.  But I’m always open to trying things a third time, even if I’m despondent about it.

He took one look in my mouth and said, “I don’t think you’re capable of fully healing with how many amalgams you have in your mouth.”  I have 7: 3 of which are huge. I’m pretty sure they were all put in the year I got Crohn’s, so it’s always been there on the back of my mind that mercury poisining is contributing to the Crohn’s.  The interesting tidbit is I always itch when I wear anything other then gold in my ears.  If  a closed wound reacts to metals, imagine what my body does to mercury vapors coming out constantly when I breathe and chew?

It’s something I’ve been wanting to do for 13 years, but I was either nursing or pregnant, or too poor.  I thought I was going to get a refund from AIT in the middle of March, but I have no idea if this is still happening.  It will help pay the $5400 it will cost to get all of the mercury replaced with composites, but the trips to SF twice a week will add up fast, especially as we currently have no car.   I’m supposed to go up to San Francisco twice a week to start the detox process.  Whether or not it will make any difference remains to be seen, but Dr. Cowan told me to expect that it will take 3 years to fully rid myself of the mercury.  I guess I won’t be having another child.

To say I am disappointed in worm therapy and everything else is a huge understatement.  I still think the right combination of worms will help me, but how the hell do I get them into me without a severe reaction?  And why is my body now churning out anal abscesses when it never has before except the first time I was diagnosed with Crohns?  Why am I now dependant on antibiotics, and need something like Cimzia or Prochymal just to get me off of them?

I love reading success stories.  And I’m insanely jealous of those with almost no side effects.  If that were me, I would redose in a heartbeat.  But the side effects from TSO were so severe, even 60 mg. of prednisone didn’t curtail the flare for days, and later, that’s when the abscesses formed, after coming off the pred.  I feel like it’s happening now in another location, so I go back on Augmentin full dose, and pray that it doesn’t cause some superbug that I will never get rid of.  I still plan on doing fecal tranfusion after coming off the antibiotics again, since we’ve got the hang of it and it’s no big deal anymore.  And the best way I know to restore the colonic bacteria.

I have to have a CRP > 5 and a CDAI over 250 to qualify for Prochymal.  I’ll also have to do a CT scan, which I hate, since I already had 2 this year.  But it seems like a way to temporarily alter the immune response, heal tissue, etc.  My UCSF GI has one patient who was in the earlier trials who failed Humira and Tysabri, who is now in remission 2 years later and considers herself “cured”.  I’ve also read threads on healingwelll that say it only lasted 3 months, but I’m really just buying time to get through the initial mercury detoxification, and perhaps redose with worms, have the LDN have a few months under my belt, and see if the e.coli Nissle + diet can make any difference.

I’m losing weight, which I hate.  My formerly lovely 165 self is down to 150 and I look skinny.  A diet of broth and soup isn’t helping.  Dr Cowan wanted me to go back on the intro diet for GAPS for 3 days, then do stage 2 for 3-7 days, etc.  The antibiotics will probably make me nauseous again, which is a plus when you’re not really thrilled about your food.  My daughter’s birthday was yesterday, and I watched my family enjoy a pizza, flourless chocolate cake, and coconut ice cream, while I ate my 6th bowl of the same beef stew and felt the strange pain forming under my vagina in my rectum, and thought of everything I’ve tried and failed over.  I woke up in the middle of the night, since my daughter slept with me and I didn’t want to show her my misery, and cried and cried at everything that hasn’t worked.  And then went back to sleep and dreamed, forgetting my pain for a little while.

Oh well.  I carry on.  We went to the SPCA yesterday to find a puppy.  There was one that was perfect; an Australian sheppard mix who was so friendly.  When we asked to see her, we were told she was on a 24 hour hold and was going to be adopted tomorrow.  All of the other dogs were either chiuauas or golden retrievers.  We did find a possible cute other one, but were told it was extremely shy, so wouldn’t fit in with our social lifestyle, with neighborhood kids coming and going all the time.  On the way home, my daughter cried and cried and said she’s giving up on finding a dog.  I told her that we had to keep trying, and reminded her of the little cross she once picked out with my mom when I was doing really badly.  It says “Never Give Up”, and when I’m crying at my extensive failures stacking on each other and still sick, she reminds me that I should never give up and some day I will be well.

It’s hard to believe after 24 years of disease.

What’s worse is being in remission for over 2 years on a small handful of worms, then going an entire year of redosing and getting worse and worse.  If they never had worked, it would have been easier.  I’d like to think the mercury amalgams are preventing my whole healing, but then why would the worms work for a while?  Why would I have been in remission in the past on diet alone?   I don’t have severe Crohn’s, I have moderately severe Crohns (as if that’s any better), but I thought if I just kept some worms in me, ate the right diet, and did a fecal tranfusion,  exercised, meditated, walked barefoot in my garden, etc, that I could approach some semblance of wellness.

So it’s back on the antibiotics, searching for “what’s next’.  In 2007, I had the choice of Procymal or worms.  I chose worms.  Now I’m having to choose Prochymal.  Oh well.

Never give up.

I found out I lost my worms months later, and reinfected with 10 more hookworms February 2008. This time, I had minimal side effects and had great effects, reaching normal CRP and was able to eat off my diet (SCD) which was a mistake probably. I started developing magnesium deficiencies and low iron; did iron shots and that caused weird nueropathic stuff (I didn’t know I was mag deficient then) and that was hard…

I did well for about 6 months Crohn’s wise, and was doing egg counts by then, started regressing and noticed my egg count was declining; I reinfected with 10 more hookworms 7 months after the last ones, and was back to normal CRP within 6 weeks. I got pregnant though, and had terrible deficiencies then, anxiety and insomnia, went on an SSRI and sleep medication, rode it out, had a misscarriage, lost a huge amount of blood and became iron deficient…but the Crohn’s was doing prettty well.

Pretty well was normal CRP and mostly normal blood, gained 25 pounds and was keeping it on, able to bike, exercise, I looked good. I finally figured out the magnesium issue and started a long road of shots, supplements, baths, etc. I’m still dealing with this issue.

I never stopped having rectal mucus, but was sleeping through the night and had mixed stools. This is where I think diet plays a role, since I was eating most anything.

About 6 months after the last infection, I started regressing again, and my egg count was going down. My cRP started to rise. I couldn’t access the worms until over 3 months later, and by then CRP had risen a lot and I had a lot of mucus and symptoms. I tried 15 hookworms, but with the existing inflammation and the quanitity of worms, things got bad at week 3 and I went on Prendisone temporarily. This worked great, and I had weaned off of them almost completely, was doing better by 9 weeks and decided to try TSO. The first dose caused about 3 days of worsening, the second dose 1 week, the 3rd dose caused severe worsening, and I had to go back on Prednisone.

And then my egg count dropped and I decided to add 10 more hookworms; this was November, 5 months after the previous dose, and I went through the extended side effects AGAIN, weaning off prednisone, and finally ended up with 3 small rectal abscesses . (Which I haven’t had for 23 years, and then, only once , when my Crohn’s presented.)

I reluctantly went on antibiotics (waiting too long and ending up in the hospital for 10 days): first Cipro and Flagyl IV, then 4 days of oral, then I switched to Augmentin for 6 weeks. At first, it was bad, but I upped my probiotics (VSL and s. boulardii) and finally, a month ago, I had solid stools and was feeling a lot better, mucus gone for once.

Amazingly, the worms survived the experience and I have the same egg count (600 epg) before and the last 2 times I’ve checked post antibioitc.

I had an MR endoscopy 2 weeks ago, which showed minor thickening in the rectum and sigmoid, but no fistulas and the abscesses were pretty much gone. CRP was back to normal. So I came off the antibiotics last Monday, started feeling nauseous on Saturday. Started GAPS diet (SCD but with lots more probitics, basically paleo at this point) but I’m still nauseous 5 days later and stools are getting looser, and more pain.

My doctor wants me to go back on antibiotics at least till I see him (this Tuesday) and to start Cimzia ASAP.

It’s been a really trying few years; I had such high hopes for the worms but think they contributed to the abscesses (and the TSO and prednisone).

I guess my plan at this point is try the Cimzia, see if it can buy me some time for me to get off antibiotics and for the worms to work, reinfect every 6 months, and see if my diet and probiotics can stretch the shots out so that I’m on diet and worms again. TT is in question now, but maybe on the Cimzia I could tolerate them better?

Any advise would be welcome.

• Dose as infrequently as possible.  All of my doses *may* have led to an increased immunity to the hookworms, judging  by the increase in side effects and inability to hold on to the infection for long.
• Don’t wait to redose until you are inflamed.  Then things get worse, with all the nasty consequences.
• Don’t wait too long to use western medicine if the worms are failing to control your disease.
• Don’t expect the worms to do everything.  Use them with diet, other supplements, exercise, meditation, etc.  Even if the worms allow you to eat sourdough bread and Thai food for the first time, resist.

May you have a much easier path then me.  I wish you all sweet remission, no worm side effects, and a pain free life filled with chocolate.   Goodbye.

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.

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.

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.

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.

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.

Just feeling nauseous, and my muscles ache, and my anus hurts.  On Saturday I decided to rest for a change, took a Benedryl in the morning since I was a little miserable, then fell asleep for a few hours.  Yesterday I felt better, until the afternoon, then took another Benedryl, and fell asleep by 5:30.  I think I had  over 14 hours sleep last night.

Things hurt this morning, lots of BM’s since in the middle of the night on.  I’ve had night sweats now for the last 3 nights straight, though I’m no where near my menses.

Things haven’t been that bad in general, so I guess this is just a little bit of misery.  The muscle aching has been really hard; every day I feel like I’ve done an enormous amount of physical work.  I chased after a thief on Wednesday who stole my purse; he looked surprised that someone would actually run after him.  But I lost him when I tried to sprint over a bush and got stuck.  Then the next few days, I suffered from every little muscle around my lower legs that had been used in the chase.

Magnesium symptoms have worsened a lot.  Can I just say that after 2 years of trying to remedy this I am feeling very despondent?

And then I’ve got the fear that the worms aren’t going to work this time, won’t be enough, won’t work longterm.  I’ve talked with a few people who have used worms for years, but are having some breakthroughs of their diseases, despite ample worm numbers.  So that’s making me depressed.

All in all, I just want to go to sleep and wake up when this Crohn’s disease thing is over.