Killed the Worms

May 14, 2012 in Uncategorized by admin | No comments

About a month ago, I killed the hookworms.  Although they were helping so much!  The IVig brought me to about 60%, but I still had anal mucus, acne, and some abdominal pain, looser stools.  After getting through the side effect period of the hookworms, where things got worse all over, including pain, all pain vanished by week 8, no more mucus, my skin cleared up, and I could get away with the occasional dietary infraction.

But around late March, after just 3 months of hosting, my symptoms of magnesium deficiency started to worsen again.  I had gotten a little slack with my seaweed and magnesium supplements (the seaweed seems to help the most), so I tried just adding them in and going back to the epsom salt foot salts and baths, but I continued to have more involuntary muscle twitches, all over my body, and my calf muscles started to cramp easily.  My big test is how long I can stand on my toes – it got down to 3 seconds before I’d cramp.  I also started having difficulty in staying warm, regulating my body temperature.

This went on for several weeks without any improvement; I kept giving myself diarrhea by taking too much magnesium (which really isn’t that much; over 400 mg. of the magnesium glycinate and I get loose stools.)  I have extended release forms that aren’t as likely to cause diarrhea, but they also don’t seem to work as well.  Finally, I started having difficulty falling asleep, and was beginning to get anxiety. All lovely symptoms I experienced for years on the hookworms, not identifying the cause.

So after a particularly miserable trip in Yosemite, where I had to take Ambien, herbs, melatonin, and Benedryl to sleep, and I couldn’t hike much without muscle weakness, I killed the worms.  I hated doing it, after all the time invested, and the fact that they were working in every other way.

It helped a little, but my experience with magnesium is it is very hard to correct once fallen to these levels.  I get better, then I’ll have a few days of loose stools or sweating, and I am back to my toe or finger twitching constantly, not having the strength in my hands.  I am also very tired, and easily fatigued.

I took a blood test two days after killing the worms, and my Red Blood Cell Magnesium test was low. Below normal.  My experience with this test is I am still symptomatic until I get a little above the low normal range.

The rest of the blood test was perfect.   Perfect!  No inflammation, CRP and SED were at 0.   Lymphocytes, Neutrophils, perfect.   So the IVig and the 10 hookworms, the paleo diet (I do cheat with homemade sprouted beans, cheese, homemade yogurt, and the occasional corn chips, were working!) I have been very non-diligent with curcumin, green tea, and fish oil, so I think it was mainly the IVig and the worms.

Now, a month later, my acne is returning, I am having anal mucus every day, and some random rectal pains.   (Although I had a few of those with the hookworms; I feel like sometimes it’s scar tissue or nerve pain residual from the abscess and surgery.)

I have also gone the full 8 weeks apart from the IVig for the first time, which I am now moving back to every 6 weeks.  I spoke with my doctor, and we’re going to try reducing the dose by 1/4.   Instead of 35 g. a day for 4 days every 8 weeks, we’re going to try 35 g for 3 days every 6 weeks. I’m hoping this helps the headaches too, which become monstrous by day 3-4.  But I don’t know how long my veins are going to last with this. I’m told you can administer IVig subcutaneously,  though it can cause irritation under the skin.  I guess I can always get a port if I have to.  The home nurse can only get an IV started in one vein; the rest are so small and just collapse once the needle is in there.  So long term, the vein could become scarred…

So here I am, still magnesium deficient, but at least I’ve got it up so that I am sleeping without aid.  I just cut out black tea, alcohol (which I was only having very occasionally), and am taking the green tea/curcumin combo only once a day, so they don’t block absorption of the magnesium.  I’m soaking in epsom salts once a day (feet or bath), and rubbing on magnesium lotion before bed.   I just ordered my very popular brown seaweed supplement (it was on Dr. Oz, so is sold out everywhere), and will try doing that 3 times a day, since that seemed to help the most. I also ordered a sublingual elemental magnesium formula, and I bought some nutritious herbs to substitute for the black tea.  (nettles, red raspberry leaf, oatstraw, parsley, alfalfa.)

Garin notices his muscles cramping,  having much more fatigue with work outs, and muscle twitching when he forgets to take his magnesium supplements for even a few days.  I also heard from another patient that he is also having issues with muscle cramping, and has had involuntary muscle twitching while hosting hookworms, symptoms he’s never experienced before. He doesn’t have IBD.  It doesn’t seem to be a common issue with hosters; I don’t know why only some of us develop iron or magnesium issues.  My iron, by the way, was fine, a little on the lower side, but not bad for a woman hosting hookworms with IBD.

So, I’m hoping to get the magnesium to a good level.  I ordered more IM shots, though they really hurt and I can’t always tell if they help.  Sometimes they seem to make me just feel weird.

I may consider just adding a few hookworms in down the road – if 10 can be so effective, maybe 3-5 would be all I need along with the IVig and everything else.

So here I am.  165 pounds, which is great news.  No pyoderma – that cleared up several months into the IVig and never came back. I get IVig this week, so I’m hoping that will halt the Crohn’s symptoms creeping back.  I still hate dealing with this stoma…

3 months in; doing great!

April 5, 2012 in Uncategorized by admin | 2 comments

Finally, some good news to post after 2 years of misery.  I’m feeling great!  Hurrah!

The hookworm side effects peaked as scheduled, worst week was week 6, when I had pains in my rectum, intestine, and scheduled a colonoscopy, afraid for more inflammation.  I had another round of IVig (getting 35 g a day for 4 days, or 140 g, now every 8 weeks.) on week 7, then things started going really well.  Pain disappeared, and I was constantly hungry, which happened with my first few years of reinfection.  From Valentines day to now, I have gained 15 pounds!  I look great, albeit a little fat.

I’m also doing a lot of physical work on my garden, and on my neighbor’s farm.  My back is getting stronger.  I’ve dug a pond, planted 50 foot rows of peas, pumpkins, lettuces.  I’m starting Fairytale Farm up again, and buying a pedicab that I will turn into a pumpkin to be both carriage and vendor for a roving farmer’s market.  So life goes on.

The best news is my gastroentrologist, Dr. Terdiman, told me I could put off my colonoscopy for a few more months since I am doing so well.  I’ll do an MRI endoscopy in a few weeks, and test my blood to see how things are there.  Colonoscopy probably will be around June/July to be at the one year mark since the ostomy, though I’m trying to time it around reinfection, since I was planning on adding another 10 hookworms around the 6 month mark.

I’ve been doing egg counts,  ye old Mc Master style, and have found 2 eggs, then 5, then 5.  This was across the entire slide, not just in the grid.  I’m starting to think I was infected with way more worms the first few years than I thought, since I had much higher egg counts, usually 10 – 15 at a time, using the same method.  But I’ve also been taking curcumin and the IVig itself may help fight the worms.  I’m going to switch over to the method that other egg counters use, involving the use of fecalyzers and zinc sulphate, so I will post my results from that soon.

The stoma itself is frustrating.  I have to bind it in a hernia belt built for ostomies, though I don’t use the hole that is supposed to go over the stoma that the bag goes through, because then there is nothing to hold the protrusion of the stoma in, so I just smash the whole thing, and try to catch when I have gas or stool, then stretch it wide to give it space.  We’ve cut the hole bigger so I’m not having constant leaks, but if I go more than 10 minutes without it bound, the stoma protrudes too much.  A home ostomy nurse came and thought that I was not only prolapsing, but herniating as well, thus the belt.  Something that the UCSF stoma nurse and surgeon didn’t think looked “too bad”, although it doesn’t comfort me to hear they’ve seen worse, because there is always worse, especially among colo-rectal surgeons who work at a huge teaching medical center specializing in IBD.  Luckily, the pyoderma is still 100% gone, so the IVig is doing its thing.

I’ve been straying off my diet which is bad, because it’s not really causing any problems other than sometimes gas that gets stuck around my narrow bend in the ileal region, so I have less motivation to keep on the straight and narrow.  I notice my skin is clearest and my gut happiest when I’m eating on my diet…unless I have too many nuts and raisins, or coconut and raisins.  I really should just stop eating raisins.  I’m afraid the area with the stricture is worse in general, and even though I tolerate kale, lettuce, and other fiber I couldn’t before, this area can get stuck for days, so I fear what we’ll find on the tests.

Lots going on in the worm world, I’ll have to write a separate blog post for all of it.  But for now, at least, I feel good, and just hope it lasts longer than a few months.  Viva la worms!

More Worms

January 12, 2012 in helminth therapy by admin | 1 comment

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!

December 19, 2011 in Uncategorized by admin | 2 comments

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…

Pyoderma, IVig

October 24, 2011 in depression, symptoms by admin | 1 comment

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….

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