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I have neglected this site.  Well, I’ve been in Venice.  And Italy.  Only for 2 weeks, but  I like to say, “I just went to Paris”.  Anyway, it shows how well I am doing, that I’ve even went.  Though I have no idea if it’s the worms.

Since I’ve neglected writing, there has been a lot going on in the worm world.  TSO trials have begun for Crohn’s disease in the United States and abroad.  Helminth therapy is being discussed all over the press, from Moises Velasquez’s book An Epidemic of Absence, to news articles from CBS to Science, all about the potential benefits of being infected with worms.

And what about me and my worms? I don’t know if I’m even hosting hookworms.  I still need to do an egg count, and see if any of the 8 I dosed with are still alive.  I don’t know how much sub Q IG is helping  on its own;  (I switched from IVig to subQ IG, which means subcutaneous Immune Globulins, which I do a dose of 50 g weekly. ) It seems to help.  The pyoderma around the stoma has never come back.  The Crohn’s?  I’m not really sure how much inflammation I have since I’m overdue for a test.  I need to do a colprotectin stool sample and take blood CRP and SED measurements.  From how my gut feels, I suspect some low grade inflammation both in my ileal-cecal area and the rectum, since I have periodic burny pain in the former and too much mucus coming from the latter.  Though the mucus is also dependant on my sweet consumption; more honey and sugar equals more mucus, when I cut back, it also recedes.  Though I don’t seem to have the willpower to keep to the right diet for long.

I am 175 pounds, however.  I need to start exercising more because I can’t say it is all muscle.  On the one hand, it is nice to have a little extra fat for once in my adult life, and I am enjoy having breasts and thighs, but my belly is getting to be too much, and my arms are starting to look bad.   I know it is from eating too many carbohydrates, and if I could just stick to a paleo diet I would return to about 165 pounds and stay there, depending on how much I exercise.  But I guess a testament to how well I’m doing is my reluctance to be fully strict with diet.  In other words, I’m mostly getting away with it. And REALLY enjoying food.

The colostomy is probably helping me to maintain relative remission, because of the constant inflammation I had in the rectum and multiple bowel movements before that; it was harder to reach a consistent level of health.  But I also hate it, it leaks sometimes and I can’t control it.  I have no idea when I’m going to have gas or a bowel movement, I can be caught in the worst places (most recently, on the 1.5 hour bus ride preceding the 2.5 hour train ride back from Siena to Venice, in which the seal completely failed, and I had shit coming down my underwear, into my pants, smelling terribly so that I would get up and move down the train after every fart  With not enough wipes to clean myself, stuck in a tiny train bathroom, Italians knocking to get in, I cursed that colostomy.  But I survived, made it back to my apartment in Venice, walked the streets of Paris, Venice, and Siena with strength and unending curiousity, feeling a sense of sadness for not being whole, but enjoying the hell out of it.   I was there. I was well enough.  And I drank lots and lots of wine.

In two weeks I go down to reinfect with 10 more hookworms in Mexico. National Geographic TV wants to film me.  I’m not sure what to think.  One might ask why I keep doing this if I don’t even know if the worms are in there.  That maybe I’m just chasing something that I think is helping, when in actuality, I’m some desperate individual hooked on getting infected with a microscopic parasite.  But as the avalanche of studies and news articles pour in about the connection between a loss of commensals and the growing tide of autoimmunity, heart disease, cancer, depression, the list of ailments is going on so long, I can’t even remember them all, it makes you want to do everything you can to prevent the modern ills of society.  And I don’t know if the worms are going to effect my Crohn’s, or if the IG is pulling all the weight, or the turmeric supplements, or the diet that I try to follow.  And at this point I’m trying not to care so much. I’d rather go to Italy.  I’d rather drink “un demi-litro” of wine, and forget my troubles for a while.   I know that when the worms are working, my skin is clearer, I can get away with eating more non-species appropriate food.  I can go on and on with energy to push myself more than the average woman.   Or maybe I just think the worms are doing this, and then it’s the power of the placebo to keep my health above water, so I’m not always sinking from average to below average, or god forbid, the dreaded flare up from hell.

Maybe the worms are doing nothing, but preventing me from getting cancer, or heart disease, or Parkinson’s, like my mother.  I’ve learned not to rely on them 100%, however, that diet, and exercise, and meditation, and friendships are just as important, and it’s the daily habits that add up to the lifetime of disease, or hopefully, health.

I’ll update the science, the links, the data from my bloodtests.  I’ll let you know what the worms do in 2 weeks, if I get another high from them, or diarrhea, or nothing.  Who knows?

I still want to get rid of this damn colostomy, but until my next colonoscopy, I’m trying to enjoy my life, develop my pedicab business, plant the winter garden, paint my house, homeschool my children, refinance my properties, get all of my friends to move onto the block, and hopefully, start painting again like the masters I saw in the Musee d’Orsey.  Play more music with people.  Drink more cappucinos and wine.  Walk for hours, smoke more, love more, and try to forget for a moment, this monster called Crohn’s that I should never had to experience in my life, and maybe, just maybe, my dream of going to Italy without a bag, without a disease, without a constant fear of what is quietly destroying myself inside quiets down to a dull, then silent whisper.

Maybe one day I can imagine myself well.  And then they can invent a pill that makes you forget all that you suffered from before.  So that when I look down at all of my abdominal scars, I can wonder what tree branch I caught myself on when I stumbled in that forest of abandon.  Or maybe I tripped on a cobblestone and scraped myself on a gondola as I fell drunkenly into the canal.

Will I still be travelling to Mexico every 6 months for more worms?

 

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…

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!

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…

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.

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