More Worms

I went back to Tijuana on December 28th for more worms. This time I crossed with my husband and Herbert Smith, another Crohn’s patient who’s done a huge benefit to the helminth community by helping create the wiki site and finding and caching every paper written on helminth therapy, as well as sharing his success with multiple websites. Like me, he had a fantastic remission on hookworms, enabling him to get off Humira and eat foods he formerly had an allergic reaction to. His Crohn’s became quiescent. However, he was under the impression that more worms and species were better, so he added 2500 trichuris trichura, and more hookworms, and finally began to regress.

He scheduled a capsule pill cam to quantify his hookworm status, which unfortunately got stuck in a narrow passage, and later, a colonoscopy showed lots of whipworms, in areas of ulceration, so not only were the whipworms not helping, they seemed to be harming those areas of tissue. He took a dose of albendezole and went back on Humira, which helped. Interestingly, his fruit allergies didn’t return. Months later, an iron and ferretin test showed extremely low levels, almost dangerously so, and he discovered he still had whipworms all those months. So he took a day of abendezole followed by mebendezole (with a fatty meal to aid absorption), and started over again.

We met and had breakfast together, then met Garin who drove us across the border to Dr. Llamas’ clinic. My husband received 25 hookworms, I got 10, and Herbert 37. (Just worked out to be what were in the combination of vials.) Strangely, it took double the time than normal (12 minutes instead of 6) for me to feel the itch. I don’t know what that means.

We said goodbye to Herbert and drove back to my father-in-law’s to pick up my children. My husband’s rash looked twice as bad as mine. The itch woke me up the first night and slowly faded over 2 weeks. We were exhausted and sort of sick feeling the first 2 days…

But then, the beloved “bounce” set in around the third day, and I went on to have the most happy, energetic 10 days I have had in years. I was almost giddy with positivism, I felt capable of conquering the world! Or at least the piles of undone projects laying around my property. I weeded great swaths of garden. Wheelbarrowed over 20 rounds of dirt. Moved an enormous brush pile, planted about 1/4 of a 2500 sq. ft. Patch of dirt. Most importantly, I conquered my husband’s 30 boxes of miscellaneous crap that have been sitting on the side of the house that include stuff going back to his childhood – most of it trash.

My poor husband, on the other hand, felt terrible. He was depressed, lethargic. He didn’t want to get out of bed and slept extra, totally unmotivated to work while his whirlwind of a wife transformed the yard. I felt sorry for him. He has only a walnut allwrgy, and about 30 pounds of belly fat he needs to get rid of. The last round of hookworms did nothing to help him. Most importantly, he is my walking resource in case Garin ever goes down, as I already live with the catastrophic result of losing my AIT worm supply when I needed to redose, which ultimately led to this colostomy that I despise.

So the three of us can track symptoms. It’s nice having the comradery of being innoculated on the same day. And the twin burden of having Crohn’s disease, finding a wonderful, natural treatment that makes evolutionary sense, telling the world about your remission, then regressing so terribly you kind of stop communicating. Picking up the pieces and starting over again.

I am 2 weeks in and the high has faded. In fact, I went to the ER a few nights ago because I had a bowel obstruction; that lovely area of my ilium that is scarred and narrowed by past Crohn’s damage got blocked by my reckless choices of nuts and raisins (which I’ve been eating without issue), raw carrots (if anything, will cause diarrhea), and the suspect culprit, raw red cabbage. I haven’t had a blockage in a few years. I forgot how painful they are. It was like labor, I was writhing around on the bed, unable to sleep or get around the pain. We finally went to the ER to get a little opiates and an x-ray. Luckily the fiber made it through, but now I’m sore and frightened, wondering if the area is inflamed (they didn’t check CRP) and chagrined at my dietary stupidity. I should have known better. I’ve had blockages before from raw cabbage. As did my ER doctor, who was born with a narrowed piece of bowel and had to have surgery because the cabbage got stuck. My GI told me about two of his colleagues who had obstructions from arugala and…raw cabbage. I will never eat raw cabbage again.

So here I am, round 13 I think, not including other worm species I’ve tried, hopeful but guarded. Relying on a variety of natural remedies that must work because I’ve got no good drugs left to try.

My last round of IVig is next week; I timed it for week 3 hoping it might help mitigate the hookworm side effects. After that, no one knows how to use it. Do I go on a maintenance dose? Do I just stop and wait and see if the pyoderma returns? (Down to a small bump of white scar tissue, hurrah.) Will my insurance even cover it longterm?

I eat SCDiet, take high amounts of fish oil, curcumin (hopefully the worms will tolerate this…it lowers egg counts so stresses them in some way but doesn’t seem to effect efficacy), green tea extract, l. Glutamine, wellbutrin, LDN, probiotics, hope.

I just want to be well forever, and get rid of this nuisance colostomy, but we shall see, we shall see…

IVig Worked!

2 days after my IVig, my chronic pain from the pyoderma was gone.  Gone!  A few days later, all intestinal pain was gone.  It felt like a miracle.  You never realize how much pain you are living with until you aren’t.  Stools began to firm up, I didn’t feel nauseous all the time.  Ah, blessed relief.

I caught a terrible cough though, and while I was enjoying this wonderful break from pain, I was coughing so much that I pulled a muscle in my ribs.  But the pyodermic bump became less red, grew smaller, and I began to feel like perhaps there was hope in this world after all.

So of course, I had to push my boundaries and eat wildly off my diet well into Thanksgiving, and the second infusion did not act like a miracle to reverse the looser stools  and ileal pain that was beginning to form.

So on December 1st I went back on strict SCD and added some anti inflammatory substances:

LDN 4.5 mg

curcumin 3 g

green tea extract 1 g

l. glutamine 9 g

fih oil 3 g EPA/DHA

and within a few days, solid stools returned and have been ever present.  Pain is better, but not gone.  Pyoderma is still pain free, all white with scar tissue, bump way smaller, but not gone.  So yet again, lesson learned that I must always be diligent with diet and not expect any one thing to be the miracle that allows me to be the glutton and drinker like I truly desire…sigh.

I went to a UCSF immunology and took a bunch of tests, but they found no immunodeficiencies.  Then why don’t I get eosoniphelia when I’m first infected with hookworms?  At least she’s willing to instruct my doctor in the dosing used for other autoimmune diseases.  The current plan is to do 4 monthly infusions, then wait.  When I regress (if…I should try to stay positive) then we do 4 more.  Assuming my insurance keeps approving it.

I’m also taking advantage of my relatively stable health and getting my mercury amalgams removed.  Interesting that a Cliffords test looking for what dental materials I accept showed an intolerance to all metals but titanium.  Confirms why I can’t wear earings for long without getting pain or itchiness.  I wonder what one of the most toxic metals in my mouth is doing to my immune system?  We’ll see if it makes a difference.  1 down, 5 more to go…

I’ve got a holistic dentist who is doing everything properly, but I’m doing weekly IV vitamin C and glutathione, plus a 1 hour biomat session to help detox.  The latest session left me really tired and then I had the strange sensation a few hours later of having to poo, and a bunch of brown, slightly greenish substance came out…I guess mucus..and I have no idea why except maybe it’s detox…it was only that one day.

I trust nothing will be effective for long, so I hedge my bets.  Next week I go back to Mexico to get 10 more hookworms.  The never ending experiment…

About 5 weeks after the ostomy surgery, I started having an inflammatory reaction to the dissolving stitches.  I also couldn’t get a bag not to leak, so there was some speculation that it was being caused by feces.  I had various ostomy nurses offer me different advice.  Then the raised pimple like bumps went down, and on the left of the ostomy, a big hole started to form.  I’d show it to the ostomy nurse at UCSF, they’d look a little worried, once she told me to put a little prednisone cream in the craters that the pimple like bumps had become.  This went on for weeks, having to change the stupid bag every 2 days, never knowing what horror I’d find underneath.  I started shaking while I took it off, had to breath deeply to put my panic down.

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….

Sometimes just being alive is something to celebrate. It’s hard to think of anything positive about the last few months. The abscesses didn’t respond to the IV antibiotics enough, and I also tried oil of oregano, propolis, laser therapy, collostrum, colloidal silver… I was told I needed a temporary ostomy to give the rectum a chance to heal. I continued to do IV antibiotics three times a day. Actually my husband did them. He became my nurse.

I set the surgery date and was marked for both a colostomy and ileostomy. I had a colonoscopy scheduled the day before, and went in with it with a six month expectation to get through the surgery, take Tysabri or Stelara for enough time to get more worms in me, raise my vitamin and mineral levels, build my probiotic levels back up, maybe even a few fecal infusions. But the colonoscopy showed such a scarred and battered rectum that it wasn’t hook up-able, so what I thought was temporary is now permanent and I am still reeling from this emotionally, since I had no idea it was so bad.

I killed the worms before surgery. Just in case they had any contribution to the infections. I cried doing it. If you’ve read through this whole blog you would know how invested I am in this therapy so the disappointment of this failure is tantamount.

I’ve since heard from two Crohn’s disease cases who were in remission but since have had more disease activity so much that one had to go back on Humira, the other Remicade. I remember a few years ago, one of the researchers who was involved in the first proof of concept CD study said that most patients had to use medications along with the worms, but the worms helped those meds work better. There aren’t that many of us doing this over 3 years, so it may be that after a year or two, the immune system overrides the worms’ effects. It could be more worms are required more often, or a combination of worms, etc. Had I been able to infect every 6 months with 10 hookworms, maybe that would have kept me in remission. Had I not tried the TSO maybe the dose of hookworms before that would have had a chance to work. Or maybe not. I can’t go back.

Sometimes I regretted not doing the human whipworms. But I heard from one UC case who had the worst ulceration in the area where the whipworms resided…and had his first solid bowel movement after finally killing them off. Another patient after getting solid, documented remission later had bad ulceration where the whipworms were and worse small bowel inflammation. So why does it work for some, for just a while, for others not at all? I was hoping by now we’d learn more.

Jasper gave me my refund back, by the way. True to his word, eventually.

I’m sitting at the UCSF infusion center, waiting for my first Tysabri infusion. The reason I did the worms was to avoid this. Yet here I am. I can’t even begin to describe the disappointment and mental pain.

The surgery didn’t go smoothly. The rectal stump blew, causing infectious fluid to leak into the abdominal cavity. I had a high fever and had to get a drain put in, which was hard to deal with. Getting used to the ostomy has been challenging. Then my intestines froze for 3 weeks and I was unable to eat without severe bloating or vomiting. I had to go on TPN, my magnesium kept dropping, the suffering seemed never-ending. I finally went home with a picc line, learning self-administration of this labor intensive fluid line that pumped all night.

Then as things slowly got better, I started getting sores under the stoma, and each bag would leak, since the drain was still in, right next to the bag, making a crease, but the wounds were also where the stitches were dissolving, so the possibility of it being a Crohn’s thing became suspect. It gets better then worse and is still painful. Now I’m waiting to see if the Tysabri helps.

The whole last year has been a nightmare that never ends. But at least the rectum is quiet now, no abscesses or fistulae. I guess the plan is to try Tysabri… If it works, then just try to enjoy some good health for awhile. Even when the worms were working, I had magnesium loss and the side effects that created, a miscarriage, the stress of fighting with Jasper, the notoriety from this blog. Watching some people get worse on worms, others miraculously better. Not knowing if it would last.

I’m almost 40 and I guess I’m still alive. But I wish life weren’t so hard. I’d sure love a long-lasting remission. I’ve suffered quite enough.

Back in the hospital again.  Two new small rectal abscesses.  What the hell is going on?  I never had abscesses, fistulae.  Are the hookworms doing anything negative since they are unable to do their positives whilst on antibiotics?  My GI says if the infection doesn’t clear in 2 weeks, then the only option is a colectomy or temporary one.  Um…what?  The rest of my colon is inflammation free for the first time, my ileal-cecal valve hasn’t had activity for years, it’s all focused right at the end of the sigmoid and rectum.  I’m not going to cut my entire colon out because the end is infected…and if the infection clears, he wants me to do Tysabri, since Humira made me worse so Cimzia probably won’t work, and the only other option is another biologic being used off label for psoriasis.  Carries the same infection and lymphoma risk as the other biologics.  Tysabri doesn’t carry the infection or cancer risk, but you have a 1 in 1000 chance in getting a fatal brain infection.

Aren’t my choices lovely?  Life offers such wonderful crosswords.  I can’t get the worms to work until I’m off antibiotics.  I can’t get off antibiotics without developing more abscesses.  I could be hopeful, get the infection cleared, temporarily use Tysabri to keep the inflammation down (I’d rather die in 2 weeks then have a long, drawn out death from lymphoma and as a gardener, I’m constantly getting scraped with dirty wounds. ) then reinfect with a larger quantity of worms, come off the Tysabri, and never, ever let myself run out of worms again for longer then just a week or two.

Anyway, I thought I’d share a song with all of you struggling with similar decisions, for everyone who’s ever had their hopes dashed time and time again and had to carry on.  The camera work and recording quality is terrible, but it’s all I could do in the hospital.

Enjoy.

 

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