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.

So I started the GAPS diet which is basically SCD but with much more emphasis on probiotics.  You’re supposed to drink lots of bone broth between meals, make veggie juices, and stick with mostly meat, vegetables, and some fruits.  Later, you can add nut flour products.  You’re encouraged to start adding probiotic foods (saurkraut, kefir, yogurt) slowly until you build up to eating probiotics with every meal. The first few days were hard, as I was craving chocolate and fruit, but those have gone away and I’ve settled in for the long hall.  My friend gave me some nettles, so I’ve been juicing those and made some tea to try to increase my nutrition.

I’m getting all my gear to try a fecal transfusion enema.  The procedure is mainly used for c. difficile, and  has a high cure rate, even after repeated rounds of antibiotics have failed.  It’s used less so for IBS and IBD.  I figure it’s worth a try, and may be a way to repopulate my colon with appropriate flora.   I once had a colonoscopy that looked like a c. difficile  infection, but tests were negative.  Flagyl stopped my flare in its tracks, within a few days I had a solid bowel movement after having diarrhea forever.   I’ve since learned that there are over 150 species of clostridia, but they only test for 2 I believe.  Every stool test I’ve sent to a place like Great Smokies showed absolutely no beneficial flora, and an overgrowth of various things like klepsiella.  This study shows that after 2 weeks of a single infusion (I believe), the recipient’s colonic flora was very similar to the donor’s.  Although in the murine model, this study showed that there was less success after antibiotics in repopulating the microbiome, but that just tells me I’ll have to do it a few rounds, probably not just one week.

Another avenue I’m exploring is buproprion (generic for Wellbutrin).  This study showed in the murine model, that buproprion profoundly lowered TNF alpha.  Another study was done with psoriasis patients, and many of them had lowered plaque levels after 6 weeks on the drug, and one who elected to stay on it had the effects last 3 months, another was still well 19 months later.  There was a thread on healingwell of one parent whose daughter did well on it alone for 7 years, apparently there are a few others.  I don’t like being on antidepressants, but I’m already on 10 mg. of Celexa, which seems to be doing nothing, so I figured I’d switch.  I’m three days in, took 100 mg. the first day and 150 the second.  Getting a little wired and twitchy, so I’ll sit with this dose for at least a week before adding.

And if all that doesn’t work, it’s either Prochymal or Cimzia.

I still have worms, but they’re not supposed to work when you’re on antibiotics.  But if I flare off of the antibioitcs, are they enough?  I’m not as enamored of the worms as in the past, since this year has been hell and I haven’t had a fistula or abscess in over 23 years (and then, it was a rectal abscess not a fistula).  I think it had to do with using Prednisone to manage the side effects, and the dismal TSO experiment.

It’s been quiet in the worm world.  I never got a refund from AIT.  Jasper said the middle of March.   I wasn’t expecting anything, but gave my paypal information, was told that he was going to wait a few weeks.  We’ll see if anything comes….

Husband has worms.  Found them in my last egg count.  But he ate some walnuts a few weeks ago and had a mouth reaction, so no oral benefit.  Didn’t have that many eggs either, but I’m going to repeat since both of us had a lot of fiber in the way, and I didn’t stir the stool as well with the salt water as I normally do.  (I had to wait hours, and both of our solid bowel movements had hardened.

What do you think of my plan?

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.

My disappointment is tantamount.  I’m reading so many articles on helmintherapy that I know the science is strong behind it.  I think the practical side is still confusing.  How often should we dose?  If we dose too often, do we increase our immunity therefore not able to hold on the infection longterm or having increased side effects?  Why did I react so violently to TSO?  What would be my reaction to trichuris trichuria?  When should I try them?  Should I try them?  Should I add more hookworms first?  So many unanswered questions.

I’m on Augmentin now for the next month at least.  I got off Cipro/Flagyl because I couldn’t take the nausea from the Flagyl any longer.  I figured I got a good week on those antibiotics in the hospital, and my fever went away.  The pain is better, but now it’s transferred to hemorrhoid pain since I’m still going to the bathroom so much.  Before the antibiotics I was going about 5-8 times a day, after, 30.  I got it down to about 8-10, but now that it’s thickening up from Questran and I’m taking so much Immodium, it comes out so slowly like a lava flow, and every few hours, a little more, then a little more.  Sore!

I’m trying sulfasalazine again, the only oral mild drug that did anything for me.  When I tried LDN, I broke out in a rash all across my bottom and I got neuropathy for the first time.  We never knew if it was the sulfa, the LDN, or a combination of both, since at first we suspected the sulfa so I came off of that, but then I flared, and had to come off the LDN, then the rash went away.  It all happened within a month, so I never knew what caused it.

They kept me at the hospital an extra 2 days to see if I was allergic to it, but so far so good.  I’m up to 3 pills a day, and the old remembered symptoms of ringing in the ears, heartburn, and sunburning easily are back.  But if it helps to lower the inflammation, then I’ll deal with the minor side effects.

What’s next?  My doctors want me to try Cimzia.  They are viewing the worms as a failure. Should I go on it for a while, finally getting the rectal and sigmoid inflammation under control and making me less likely to react if I try whipworms?  The problem is, Humira made me 3 X worse, so it’s no guarantee that Cimzia is going to do anything good.  And if it does make me worse, all that’s left is the IV horrors, Tysabri or something starting with an S that they use for psoriasis, off label for Crohn’s.  Watching my friend die of cancer last year (unrelated to biologics) just makes me fear these drugs more.

I hate the Crohn’s disease choices.  I want the probiotics that studies have shown to reverse colitis in the rat model.  I’ll put links up later, but you can’t get them yet anyway. Wouldn’t that be nice?  Just take a probiotic and your CD would disappear.  No worm side effects, no losing your infection constantly.  No stress with your suppliers.

I’m gaining strength; I should have walked more in the hospital, so I’m dealing with muscles that have atrophied.  I can’t do much, but I walk around the block every day, and I’ve got crews coming to plant my garden since I can’t do it myself.  I watch a lot of TV at night, and I’ve read a few books, meditate.

Why has it come to this?  I was in remission on hookworms for a good 2 years.  It seems like many people with IBD are having trouble holding on to their hookworms, and need redosing more often then every few years.

Now people are having to fly to England to get dosed by AIT; it’s not seeming like such a good financial deal after all.  Also, if one needs redosing more frequently then every 3-5 years like  advertised, then it gets quite expensive.  I’m glad I only need to drive to Tijuana now, I could never fly to England.  And I still wish it were legal to just incubate our own.

I’m feeling stronger and less pessimistic.  I don’t know what I’m doing next, but trying to just hold steady where I’m at.  Trying not to poop every few hours, can’t leave the house because of this, but I’m too weak to go anywhere anyway, and the weather has been so balmy of late it feels like summer here.  At least the blood and mucus has almost completely gone away, and with Questran and Immodium, I’m having better stools.

I still need painkillers at night after so many trips to the toilet.  It seems like overkill to take Vicodan for hemorrhoids, but they really hurt by the end of the night, and my muscles are sore from inactivity and trying to do more then I should in the day.

At least I’m sleeping well and a lot, and dreaming of banquets, eating Thanksgiving like food.  During the day, I don’t have much appetite, and it’s a chore just to get through a meal.  I’m craving sushi with eel in it, so have indulged that several times.  Just avoiding the raw fish since everyone keeps saying I’m immunocompromised, though I resist that definition.

Oh, sigmoid colon and rectum, you’ve gone through so much.  What formula will make you better?

• 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.

Yesterday, I went to my local GI who felt around a bit with his pinky, then pointer finger, and he didn’t feel any big mass, but thought he felt a soft spot that was painful and might be an abscess.  It also might be up where he can’t reach, or in the wall of the rectum.  Only the CT scan will tell for sure.

IF I have an abscess, the usual course of treatment is antibiotics: Flagyl and possibly Cipro.  Precisely the antibiotics that either kill the worms or reduce their egg laying and efficacy for up to two months.  Some positive changes were FINALLY occurring this last week; the nausea lifted (both in my husband and me), I’ve started having some perfectly solid stools (well, they’re thinner then I like, but to actually see the pieces of stool piled up on top of each other is an IBD’ers joy.)  I’m still having loose stools mixed in, mucus, blood (My GI says my internal hemorrhoids are bleeding too).  If it weren’t for this potential rectal abscess and fever over the last few days, I thought I was getting better.

Which leads me to the antibiotic dilemma.  If I have an abscess, I can’t ignore it.  It may even need to be surgically drained.  To have to start over with reinfecting, after just getting through 6+ weeks of side effects after enduring TSO side effect hell after just getting through the 8 weeks of side effects from June’s hookworm dose…oh God, I do not want to have to go through that again so soon.

So I’ve been researching natural antibiotics that do not kill the worms.  I have a week.  Whatever I can do in the meantime may save me from disaster.

And it really makes me realize:  we need an effective substitution for antibiotics.  If we want to not harm our worms, and experience ongoing efficacy, it’s critical that we establish an antibiotic substitute that is effective and worm safe.

I’ve been doing research, and this is what I’ve come up with so far:

• Bacteriophage therapy :  This would be ideal, but isn’t really known about here in the US.  It involves using viruses to target specific bacteria.  In non-scientific terms, the virus “eats” the bacteria until it’s gone, then the phage dies.  Wouldn’t destroy other good bacteria of the gut, like broad spectrum antibiotics.  You have to culture the bacteria to know which phage to use.  Right now,  I have only found two naturopaths who use phages, one in Portland, the other Olympia Washington.  Evergreen College is doing research on phages; I haven’t heard back from them for recommendations if I can find anyone locally to use them, if it’s even a possibility.
• raw garlic: This study showed up to 21 grams of raw garlic a day didn’t lower egg count, but the eggs failed to mature into larvae as pre-garlic larvae, and some eggs died, but after 2 days of stopping the garlic, everything went back to normal. I clove of garlic is approximately 2 grams, so that’s a lot of garlic.  I’m currently chewing on 3 raw cloves of garlic a day.
• Oregano Oil: this should not be taken orally, since it’s supposed to potentially kill the worms.  It’s considered very antibiotic to a wide range of pathogens.  I am applying it topically; with a rectal syringe, in 8:1 concentration with olive oil.  Combined with the raw garlic, I smell like a pizza!
• Colloidal silver: Is it safe?  Does it work?  I don’t know, but I’m also applying this topically in the syringe.  Won’t take it orally since it may hurt the worms.
• Propolis: supposed to be anti everything, potentially anti-helminthic.  I thought I’d try a little bit orally and see what happens.

If you have taken oral natural antibiotics whilst hosting helminths without hurting them, please let me know.  And I’ll update in a week with what the CT scan shows.  If I have to take Flagyl and start over again…oh God.  Will cross that bridge when I get to it.

Husband’s?  0

Worms haven’t matured yet?  Hopefully next week we’ll stop feeling disillusioned, sick and weary.

Husband had total, liquid diarrhea yesterday.  So we seem to be on the same track.

I love reading publicity about helmintherapy claiming there are little to no side effects.  I know some people do get lucky.  But for many of us, the first few months are like a bad dream, with the promise of some good health on the other side.  For those of us who have gotten 3 doses of worms in the last 6 months, with all of the side effects and none of the joy, all I can is, ugh.  Worms are not fun.

My husband is tired a lot, and fatigued from exercising more then usual.  All week he’s had soft stools, now diarrhea.

Happy New Year?

It’s my daughter’s birthday today.  I will try hard not to clutch my side in pain, and see if I can actually walk downtown.  I’ll make her a cheesecake I don’t dare eat, and hope she doesn’t want to do something active today, like go rollerskating.  Because it will be yet another birthday where mom isn’t well, but sure as hell is going to try to be happy anyway.  Because I have brought a blessed teenager into the world.  And so far she is healthy and happy.  And despite this miserable disease, I’ve raised two pretty incredible girls, got to have the luxury of pregnancy and breastfeeding, holding my children, watching them grow and thrive.   How lucky I am.