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	<title>Waiting for the Cure &#187; Uncategorized</title>
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	<description>... a day in the life of Crohn's disease ...</description>
	<lastBuildDate>Mon, 14 May 2012 14:55:45 +0000</lastBuildDate>
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		<title>Killed the Worms</title>
		<link>http://waitingforthecure.com/I/2012/05/14/killed-the-worms/</link>
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		<pubDate>Mon, 14 May 2012 14:55:45 +0000</pubDate>
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		<guid isPermaLink="false">http://waitingforthecure.com/I/?p=1445</guid>
		<description><![CDATA[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 [...]]]></description>
			<content:encoded><![CDATA[<p>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.</p>
<p>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 &#8211; it got down to 3 seconds before I&#8217;d cramp.  I also started having difficulty in staying warm, regulating my body temperature.</p>
<p>This went on for several weeks without any improvement; I kept giving myself diarrhea by taking too much magnesium (which really isn&#8217;t that much; over 400 mg. of the magnesium glycinate and I get loose stools.)  I have extended release forms that aren&#8217;t as likely to cause diarrhea, but they also don&#8217;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.</p>
<p>So after a particularly miserable trip in Yosemite, where I had to take Ambien, herbs, melatonin, and Benedryl to sleep, and I couldn&#8217;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.</p>
<p>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&#8217;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.</p>
<p>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.</p>
<p>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.</p>
<p>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&#8217;s scar tissue or nerve pain residual from the abscess and surgery.)</p>
<p>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&#8217;re going to try reducing the dose by 1/4.   Instead of 35 g. a day for 4 days every 8 weeks, we&#8217;re going to try 35 g for 3 days every 6 weeks. I&#8217;m hoping this helps the headaches too, which become monstrous by day 3-4.  But I don&#8217;t know how long my veins are going to last with this. I&#8217;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&#8230;</p>
<p>So here I am, still magnesium deficient, but at least I&#8217;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&#8217;t block absorption of the magnesium.  I&#8217;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.)</p>
<p>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&#8217;s never experienced before. He doesn&#8217;t have IBD.  It doesn&#8217;t seem to be a common issue with hosters; I don&#8217;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.</p>
<p>So, I&#8217;m hoping to get the magnesium to a good level.  I ordered more IM shots, though they really hurt and I can&#8217;t always tell if they help.  Sometimes they seem to make me just feel weird.</p>
<p>I may consider just adding a few hookworms in down the road &#8211; if 10 can be so effective, maybe 3-5 would be all I need along with the IVig and everything else.</p>
<p>So here I am.  165 pounds, which is great news.  No pyoderma &#8211; that cleared up several months into the IVig and never came back. I get IVig this week, so I&#8217;m hoping that will halt the Crohn&#8217;s symptoms creeping back.  I still hate dealing with this stoma&#8230;</p>
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		<title>3 months in; doing great!</title>
		<link>http://waitingforthecure.com/I/2012/04/05/3-months-in-doing-great/</link>
		<comments>http://waitingforthecure.com/I/2012/04/05/3-months-in-doing-great/#comments</comments>
		<pubDate>Thu, 05 Apr 2012 14:36:00 +0000</pubDate>
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		<guid isPermaLink="false">http://waitingforthecure.com/I/?p=1440</guid>
		<description><![CDATA[Finally, some good news to post after 2 years of misery.  I&#8217;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 [...]]]></description>
			<content:encoded><![CDATA[<p>Finally, some good news to post after 2 years of misery.  I&#8217;m feeling great!  Hurrah!</p>
<p>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.</p>
<p>I&#8217;m also doing a lot of physical work on my garden, and on my neighbor&#8217;s farm.  My back is getting stronger.  I&#8217;ve dug a pond, planted 50 foot rows of peas, pumpkins, lettuces.  I&#8217;m starting <a href="http://www.fairy-talefarm.com/" target="_blank">Fairytale Farm</a> up again, and buying a pedicab that I will turn into a pumpkin to be both carriage and vendor for a roving farmer&#8217;s market.  So life goes on.</p>
<p>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&#8217;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&#8217;m trying to time it around reinfection, since I was planning on adding another 10 hookworms around the 6 month mark.</p>
<p>I&#8217;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&#8217;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 &#8211; 15 at a time, using the same method.  But I&#8217;ve also been taking curcumin and the IVig itself may help fight the worms.  I&#8217;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.</p>
<p>The stoma itself is frustrating.  I have to bind it in a hernia belt built for ostomies, though I don&#8217;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&#8217;ve cut the hole bigger so I&#8217;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&#8217;t think looked &#8220;too bad&#8221;, although it doesn&#8217;t comfort me to hear they&#8217;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.</p>
<p>I&#8217;ve been straying off my diet which is bad, because it&#8217;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&#8217;m eating on my diet&#8230;unless I have too many nuts and raisins, or coconut and raisins.  I really should just stop eating raisins.  I&#8217;m afraid the area with the stricture is worse in general, and even though I tolerate kale, lettuce, and other fiber I couldn&#8217;t before, this area can get stuck for days, so I fear what we&#8217;ll find on the tests.</p>
<p>Lots going on in the worm world, I&#8217;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!</p>
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		<title>IVig Worked!</title>
		<link>http://waitingforthecure.com/I/2011/12/19/ivig-worked/</link>
		<comments>http://waitingforthecure.com/I/2011/12/19/ivig-worked/#comments</comments>
		<pubDate>Tue, 20 Dec 2011 02:47:29 +0000</pubDate>
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		<guid isPermaLink="false">http://waitingforthecure.com/I/?p=1415</guid>
		<description><![CDATA[2 days after my IVig, my chronic pain from the pyoderma was gone.Â  Gone!Â  A few days later, all intestinal pain was gone.Â  It felt like a miracle.Â  You never realize how much pain you are living with until you aren&#8217;t.Â  Stools began to firm up, I didn&#8217;t feel nauseous all the time.Â  Ah, blessed [...]]]></description>
			<content:encoded><![CDATA[<p>2 days after my IVig, my chronic pain from the pyoderma was gone.Â  Gone!Â  A few days later, all intestinal pain was gone.Â  It felt like a miracle.Â  You never realize how much pain you are living with until you aren&#8217;t.Â  Stools began to firm up, I didn&#8217;t feel nauseous all the time.Â  Ah, blessed relief.</p>
<p>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.Â  But the pyodermic bump became less red, grew smaller, and I began to feel like perhaps there was hope in this world after all.</p>
<p>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 stoolsÂ  and ileal pain that was beginning to form.</p>
<p>So on December 1st I went back on strict SCD and added some anti inflammatory substances:</p>
<p>LDN 4.5 mg</p>
<p>curcumin 3 g</p>
<p>green tea extract 1 g</p>
<p>l. glutamine 9 g</p>
<p>fih oil 3 g EPA/DHA</p>
<p>and within a few days, solid stools returned and have been ever present.Â  Pain is better, but not gone.Â  Pyoderma is still pain free, all white with scar tissue, bump way smaller, but not gone.Â  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&#8230;sigh.</p>
<p>I went to a UCSF immunology and took a bunch of tests, but they found no immunodeficiencies.Â  Then why don&#8217;t I get eosoniphelia when I&#8217;m first infected with hookworms?Â  At least she&#8217;s willing to instruct my doctor in the dosing used for other autoimmune diseases.Â  The current plan is to do 4 monthly infusions, then wait.Â  When I regress (if&#8230;I should try to stay positive) then we do 4 more.Â  Assuming my insurance keeps approving it.</p>
<p>I&#8217;m also taking advantage of my relatively stable health and getting my mercury amalgams removed.Â  Interesting that a Cliffords test looking for what dental materials I accept showed an intolerance to all metals but titanium.Â  Confirms why I can&#8217;t wear earings for long without getting pain or itchiness.Â  I wonder what one of the most toxic metals in my mouth is doing to my immune system?Â  We&#8217;ll see if it makes a difference.Â  1 down, 5 more to go&#8230;</p>
<p>I&#8217;ve got a holistic dentist who is doing everything properly, but I&#8217;m doing weekly IV vitamin C and glutathione, plus a 1 hour biomat session to help detox.Â  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&#8230;I guess mucus..and I have no idea why except maybe it&#8217;s detox&#8230;it was only that one day.</p>
<p>I trust nothing will be effective for long, so I hedge my bets.Â  Next week I go back to Mexico to get 10 more hookworms.Â  The never ending experiment&#8230;</p>
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		<title>Killing the Worms</title>
		<link>http://waitingforthecure.com/I/2011/09/09/killing-the-worms/</link>
		<comments>http://waitingforthecure.com/I/2011/09/09/killing-the-worms/#comments</comments>
		<pubDate>Sat, 10 Sep 2011 00:51:45 +0000</pubDate>
		<dc:creator>admin</dc:creator>
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		<guid isPermaLink="false">http://waitingforthecure.com/I/?p=1407</guid>
		<description><![CDATA[Sometimes just being alive is something to celebrate. It&#8217;s hard to think of anything positive about the last few months. The abscesses didn&#8217;t respond to the IV antibiotics enough, and I also tried oil of oregano, propolis, laser therapy, collostrum, colloidal silver&#8230; I was told I needed a temporary ostomy to give the rectum a [...]]]></description>
			<content:encoded><![CDATA[<p>Sometimes just being alive is something to celebrate.  It&#8217;s hard to think of anything positive about the last few months.  The abscesses didn&#8217;t respond to the IV antibiotics enough, and I also tried oil of oregano, propolis, laser therapy, collostrum, colloidal silver&#8230;  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.  </p>
<p>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&#8217;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.</p>
<p>I killed the worms before surgery.  Just in case they had any contribution to the infections.  I cried doing it.  If you&#8217;ve read through this whole blog you would know how invested I am in this therapy so the disappointment of this failure is tantamount.</p>
<p>I&#8217;ve since heard from two Crohn&#8217;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&#8217;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&#8217; 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&#8217;t go back.</p>
<p>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&#8230;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&#8217;d learn more.</p>
<p>Jasper gave me my refund back, by the way.  True to his word, eventually.</p>
<p>I&#8217;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&#8217;t even begin to describe the disappointment and mental pain.</p>
<p>The surgery didn&#8217;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.  </p>
<p>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&#8217;s thing became suspect.  It gets better then worse and is still painful.  Now I&#8217;m waiting to see if the Tysabri helps.</p>
<p>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&#8230;  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.</p>
<p>I&#8217;m almost 40 and I guess I&#8217;m still alive.  But I wish life weren&#8217;t so hard.  I&#8217;d sure love a long-lasting remission.  I&#8217;ve suffered quite enough.</p>
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		<title>Making Lemonade</title>
		<link>http://waitingforthecure.com/I/2011/05/12/making-lemonade/</link>
		<comments>http://waitingforthecure.com/I/2011/05/12/making-lemonade/#comments</comments>
		<pubDate>Fri, 13 May 2011 00:15:39 +0000</pubDate>
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		<guid isPermaLink="false">http://waitingforthecure.com/I/?p=1397</guid>
		<description><![CDATA[Back in the hospital again.Â  Two new small rectal abscesses.Â  What the hell is going on?Â  I never had abscesses, fistulae.Â  Are the hookworms doing anything negative since they are unable to do their positives whilst on antibiotics?Â  My GI says if the infection doesn&#8217;t clear in 2 weeks, then the only option is a [...]]]></description>
			<content:encoded><![CDATA[<p> <iframe width="425" height="349" src="http://www.youtube.com/embed/bcBm8RM9hT0?rel=0" frameborder="0" allowfullscreen></iframe></p>
<p>Back in the hospital again.Â  Two new small rectal abscesses.Â  What the hell is going on?Â  I never had abscesses, fistulae.Â  Are the hookworms doing anything negative since they are unable to do their positives whilst on antibiotics?Â  My GI says if the infection doesn&#8217;t clear in 2 weeks, then the only option is a colectomy or temporary one.Â  Um&#8230;what?Â  The rest of my colon is inflammation free for the first time, my ileal-cecal valve hasn&#8217;t had activity for years, it&#8217;s all focused right at the end of the sigmoid and rectum.Â  I&#8217;m not going to cut my entire colon out because the end is infected&#8230;and if the infection clears, he wants me to do Tysabri, since Humira made me worse so Cimzia probably won&#8217;t work, and the only other option is another biologic being used off label for psoriasis.Â  Carries the same infection and lymphoma risk as the other biologics.Â  Tysabri doesn&#8217;t carry the infection or cancer risk, but you have a 1 in 1000 chance in getting a fatal brain infection.</p>
<p>Aren&#8217;t my choices lovely?Â  Life offers such wonderful crosswords.Â  I can&#8217;t get the worms to work until I&#8217;m off antibiotics.Â  I can&#8217;t get off antibiotics without developing more abscesses.Â  I could be hopeful, get the infection cleared, temporarily use Tysabri to keep the inflammation down (I&#8217;d rather die in 2 weeks then have a long, drawn out death from lymphoma and as a gardener, I&#8217;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.</p>
<p>Anyway, I thought I&#8217;d share a song with all of you struggling with similar decisions, for everyone who&#8217;s ever had their hopes dashed time and time again and had to carry on.Â  The camera work and recording quality is terrible, but it&#8217;s all I could do in the hospital.</p>
<p>Enjoy.</p>
<p>&nbsp;</p>
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		<title>Still have Eggs and Solid Stools</title>
		<link>http://waitingforthecure.com/I/2011/03/03/still-have-eggs-and-solid-stools/</link>
		<comments>http://waitingforthecure.com/I/2011/03/03/still-have-eggs-and-solid-stools/#comments</comments>
		<pubDate>Thu, 03 Mar 2011 14:53:41 +0000</pubDate>
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		<guid isPermaLink="false">http://waitingforthecure.com/I/?p=1362</guid>
		<description><![CDATA[Just did an egg count: 550 epg.Â  Many eggs outside the grid (19!) so nice active population.Â  Which means the hookworms survived the IV antibiotics Flagyl and Cipro, plus a few days of oral, then 3 weeks of Augmentin, another antibiotic, and all the miscellaneous painkillers, CT scans with contrast, etc. And I&#8217;ve been doing [...]]]></description>
			<content:encoded><![CDATA[<p>Just did an egg count: 550 epg.Â  Many eggs outside the grid (19!) so nice active population.Â  Which means the hookworms survived the IV antibiotics Flagyl and Cipro, plus a few days of oral, then 3 weeks of Augmentin, another antibiotic, and all the miscellaneous painkillers, CT scans with contrast, etc.</p>
<p>And I&#8217;ve been doing a lot better this last week.Â  I&#8217;m sleeping through the night without having to get up to use the bathroom.Â  Stools are magically solid each time, with little to no mucus, and no blood.Â  I&#8217;m going about 3 times in the morning, and maybe another one in the evening.</p>
<p>Still have pain in my rectum, still not right all the way.Â  I find out next Monday exactly what&#8217;s going on as I have an MR enterography scheduled.</p>
<p>Could the antibiotic/probiotics be working well?Â  (I upped my probiotic regime after starting IV antibiotics.Â  I take s. boulardii and VSL #3, 3-4 times a day.)Â  I&#8217;m also taking 4 sulfasalazine a day without issue.Â  (Except that I&#8217;m getting sunburn very easily and have some tinnitus.)</p>
<p>Today is my birthday, and I thought I&#8217;d be sicker then this.Â  But I&#8217;m pleased to have solid stools coming out, and even though I&#8217;m itchy with yeast and hemorrhoids, I am tolerating more foods and will be enjoying a flourless chocolate cake slice this evening with Coconut Dream ice cream.</p>
<p>I also should add that I started drinking a little raw milk every day.Â  About 1/4 a cup, and I usually drink it with one dose of my probiotics.Â  A good friend of mine with Crohn&#8217;s swears by it and has better, more immediate efficacy then he got on the hookworms, which he lost after about 9 months.Â  It&#8217;s been nice having aÂ  little in with my black tea in the morning&#8230;.yum.</p>
<p>So are the hookworms finally helping, was it all the antibiotics/probiotics?Â  I guess I find out on Monday what&#8217;s really going on, and then I get to decide my next move.Â  (Should I sit with what I have now, go on Cimzia, try human whipworms&#8230;oh the choices in the Crohn&#8217;s disease arsenal&#8230;)</p>
<p>Off to soak in hot tubs, get a massage, and plant sweet pea flowers.Â  Life is finally good, I&#8217;m getting more energy, back in the garden, biking again, building my muscles back from the atrophy of the hospital.Â  Let&#8217;s see if it lasts&#8230;</p>
<p>&nbsp;</p>
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		<title>Days 11 and 12: giving thanks!</title>
		<link>http://waitingforthecure.com/I/2010/11/25/days-11-and-12-giving-thanks/</link>
		<comments>http://waitingforthecure.com/I/2010/11/25/days-11-and-12-giving-thanks/#comments</comments>
		<pubDate>Thu, 25 Nov 2010 15:58:01 +0000</pubDate>
		<dc:creator>admin</dc:creator>
				<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://waitingforthecure.com/I/?p=1251</guid>
		<description><![CDATA[Sometimes I have to write about the good times.Â  This blog has too much negativity it seems.Â Â  Yesterday, after sleeping through the night and having good dreams, I woke up to a solid bowel movement.Â  Granted, there was blood when I wiped, and it hurt coming through, but to have a solid bowel movement is [...]]]></description>
			<content:encoded><![CDATA[<p>Sometimes I have to write about the good times.Â  This blog has too much negativity it seems.Â Â  Yesterday, after sleeping through the night and having good dreams, I woke up to a solid bowel movement.Â  Granted, there was blood when I wiped, and it hurt coming through, but to have a solid bowel movement is such a joy.<a href="http://waitingforthecure.com/I/wp-content/uploads/2009/10/happyface.jpg"><img class="alignleft size-medium wp-image-836" title="happyface" src="http://waitingforthecure.com/I/wp-content/uploads/2009/10/happyface-300x225.jpg" alt="" width="300" height="225" /></a></p>
<p>I felt so happy yesterday, no nausea, some energy.Â  I went for my one hour walk, on the beach, besides the bluest ocean I&#8217;ve seen for days, the first day after a storm, clouds billowing out beautifully.Â  I was still a little loopy from the Benedryl I&#8217;d taken before bed (I seem to get Benedryl hang overs), but it just added to the mystery of nature. The ripples on the waves as they&#8217;re kissingÂ  the sand is even more impressive when a little wacked out on Benedryl.<span id="more-1251"></span></p>
<p>Later, I did some long needed gardening, and finally got super tired in the evening.</p>
<p>Although I got up once to use the bathroom last night, it was solid again!Â  As it was this morning!Â  I don&#8217;t know what&#8217;s going on, but perhaps I did have the flu the last week, or maybe the hookworms are in a good place right now with my system.Â  I&#8217;m sure it won&#8217;t last, but I&#8217;m loving it while I can.</p>
<p>With Crohn&#8217;s disease, you learn to milk your good times for all they&#8217;re worth.Â  So the tomatoes all got harvested.Â  The sunflower seeds collected and dried.Â  Thai basil seeds saved, teddy bear sunflowers, scarlet runner beans.Â  I&#8217;ve got a little urban farm that we&#8217;ve turned into a community artistic oasis, but being sick these last few months has meant cancelling our pie parties, holiday art shows, etc.Â  In January, we&#8217;re going to try to transform our two yards into a neighborhood food mecca, with interns to help plant and maximize our food crops; we&#8217;ve got 3 neighbors interested who will transform their lots as well, with the intention of sharing our produce longterm.Â  We&#8217;ve got the apple, plums, apricots, etc, you&#8217;ve got the walnut tree, parsimmons, lemons.Â  We can&#8217;t fit it all in our lot, so our neighbors can plant their own trees, and we&#8217;ll all share forever.</p>
<p>Of course, we&#8217;ll blog about it.Â  All on www.fairy-talefarm.com</p>
<p>With a chronic disease, it&#8217;s hard to start new businesses.Â  I was offered two jobs in the last 2 months, both extremely exciting.Â  I had to turn them down, going through the TSO nightmare.Â  I&#8217;ve turned down so many important job offers over the years, I try not to care.Â  A modeling career, an art school in Florence, an acting gig, the most recent:Â  pie maker at a very fun and artistic restaurant.</p>
<p>But walking on the beach yesterday, the most beautiful day you can imagine&#8230;having had a solid bowel movement, with energy to walk at all!Â  No pain in my digestive system, granted some mucus came out so I had a wet butt most of the way home, but nothing&#8217;s perfect in life&#8230;still.Â  My girls are healthy and smart, so beautiful, well balanced. My older daughter is turning 13 in a few weeks, and she still hugs me everyday.Â  I have a husband who adores me, and is getting cuter every day as he works hard at his exercise regime.Â  His rash came back yesterday, little raised bumps that itched.Â  But he feels fine other than that, no husband hookworm side effects to report yet.</p>
<p>I feel privileged to know about helmintherapy and to have access to it at all.Â  I love working with Dr. Llamas who calls me now and reminds me not to worry.Â  It&#8217;s so niceÂ  working withÂ  rational and easygoing providers, who answer my questions without paranoia or venom.Â  And I have hope that these new worms will eventually help; perhaps they are helping already?Â  I really have nothing to attribute these two days of beautiful health, but I am thankful for them while they last.</p>
<p>And my husband, the chef, is cooking tonight&#8217;s dinner, his father, also the chef of the family, helping.Â  We already celebrated Thanksgiving in LA last weekend, so this is #2!Â  Not to be afraid of the meal is a blessing.</p>
<p>So to all out there struggling with various diseases, may you too have a few glorious days.Â  Just to remind you that they are out there, and every day has moments to cherish.Â  Now I need to get my warm clothes on to greet the ocean waves, then come back to make an apple pie&#8230;with almond flour crust&#8230;and honey in the filling&#8230;with apples from my tree.</p>
<p>Life is good.Â  At least right now.</p>
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		<title>Taking a Summer Break</title>
		<link>http://waitingforthecure.com/I/2010/06/30/taking-a-summer-break/</link>
		<comments>http://waitingforthecure.com/I/2010/06/30/taking-a-summer-break/#comments</comments>
		<pubDate>Wed, 30 Jun 2010 16:33:38 +0000</pubDate>
		<dc:creator>I</dc:creator>
				<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://waitingforthecure.com/I/?p=1039</guid>
		<description><![CDATA[I&#8217;m going to take a break from blogging for the summer.Â  I just want to have some time away from thinking about worm therapy, and need to give the new things I&#8217;m doing some time to assess before writing about them.Â  I&#8217;ll still take comments and answer questions, so keep &#8216;em coming. My action plan: [...]]]></description>
			<content:encoded><![CDATA[<p><a href="http://waitingforthecure.com/I/wp-content/uploads/2009/11/sunset.jpg"><img class="aligncenter size-medium wp-image-883" title="sunset" src="http://waitingforthecure.com/I/wp-content/uploads/2009/11/sunset-300x225.jpg" alt="" width="300" height="225" /></a>I&#8217;m going to take a break from blogging for the summer.Â  I just want to have some time away from thinking about worm therapy, and need to give the new things I&#8217;m doing some time to assess before writing about them.Â  I&#8217;ll still take comments and answer questions, so keep &#8216;em coming.</p>
<p>My action plan:</p>
<p>15 new hookworms</p>
<p><a href="www.breakingtheviciouscycle.info">SCDiet</a> (mostly)</p>
<p><a href="http://jn.nutrition.org/cgi/content/full/138/12/2481">l.glutamine/l.arginine 4 g/1g</a></p>
<p><a href="http://www.emaxhealth.com/1275/resveratrol-improves-inflammatory-bowel-disease-symptoms">reservetrol</a> 150 mg.</p>
<p>Udo&#8217;s Choice Super Bifido Plus probiotic (2 caps a day, working up to more) +</p>
<p>Udo&#8217;s ChoiceÂ  Super 8 Hi-Potency Probiotic (1 cap a day, working up)</p>
<p>Fish oil: 3000 mg EPA/DHA (Nordic Naturals Ultimate Omega)</p>
<p>Vit D: 7000 &#8211; 10,000 IU a day</p>
<p>Magnesium glycinate 350 mg. (about all I tolerate before getting loose stools)</p>
<p>magnesium chloride baths: 2 a day (this is helping with the magnesium deficiency symptoms, thank God!!)</p>
<p>multi vitamin + extra Vit A (since I am low in this)</p>
<p>meditation (1 -2 X a day), lots of sun, exercise, and prayer</p>
<p>I had an MR enterography done recently.Â  It showed mild inflammation in the ileal-cecal valve with minor scarring, a very inflamed sigmoid colon, and my first ever fistula, going from the colon to an ovary.Â  Very disappointing.Â  So though the hookworms have helped fabulously, the wait to reinfect (I went 9 months this time) led to some pretty bad inflammation.Â  My GI said the entire wall had eroded through, which is what led to the fistula.</p>
<p>Whipworms may help more, but AIT decided not to offer them to me due to anger about some of these blog contents.Â  I may get access to them from another source down the road.Â  But for now, hopefully the above plan will help things heal.Â  Enjoying the summer bounty, the fruits of my trees in strict moderation, unfortunately (will a summer ever come where I can eat my plums with abandon?)</p>
<p>I hope everyone else has a much easier time with helminth therapy.Â  It has not been a fun road for me, though I am grateful for the opportunity in trying them.Â  Hopefully good days are to come.</p>
<p>May all of you with Crohn&#8217;s find relief.Â  Here&#8217;s a prayer for your suffering: may you find what you need to get well.Â  May you live pain free and free from fear.Â  May your meals be joyous and deprivation be an unknown concept.</p>
<p>Finally, please pray for all of those people suffering terribly from this disease. I am not that religious, but prayer has been shown to work, and it&#8217;s cheap and easy!Â  For everyone who reads this, send a silent vision of wellness for humanity.Â  May we all return to a perfect state, and send our suffering to the wind, to be whispered then forgotten.Â  Peace to all.</p>
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		<title>New McMaster Egg Counts</title>
		<link>http://waitingforthecure.com/I/2010/05/26/new-mcmaster-egg-counts/</link>
		<comments>http://waitingforthecure.com/I/2010/05/26/new-mcmaster-egg-counts/#comments</comments>
		<pubDate>Wed, 26 May 2010 20:10:53 +0000</pubDate>
		<dc:creator>I</dc:creator>
				<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://waitingforthecure.com/I/?p=1016</guid>
		<description><![CDATA[I did another egg count; my old way (which I now realize is wrong) was to count all the eggs I saw, whether in the grid or not.Â Â  This egg count = 1300 epg, which is similar to what I&#8217;ve been getting since reinfecting with 10 hookworms last September.Â  The bad news, is the egg [...]]]></description>
			<content:encoded><![CDATA[<p>I did another egg count; my old way (which I now realize is wrong) was to count all the eggs I saw, whether in the grid or not.Â Â  This egg count = 1300 epg, which is similar to what I&#8217;ve been getting since reinfecting with 10 hookworms last September.Â  The bad news, is the egg count hasn&#8217;t gone down at all, so my regression isn&#8217;t due to any worms dying, or loss of fecundity.</p>
<p>But I did a much more thorough microscope evaluation this time, and 12 of those eggs were out of the grid.Â  So my real egg count would be 700 epg.Â  Which makes a lot more sense worm-wise, since I&#8217;ve been wondering how my egg count could be so high for such a small amount of worms.</p>
<p>The Nottingham allergy trial gave everyone 10 hookworms and did quantitative egg count in all 15 participants.Â  2 didn&#8217;t show an egg count at all, and the other 13 had from 90 &#8211; 200 epg.Â  Another study, which followed one person infected with 5 parasites over the course of 17 years, estimated that the average egg count for a single adult female in the prime of her life was 50 epg.Â  So a count of 700 epg would assume 14 females.Â  My first counts of 800 epg after the initial 10 worms could have been more like 400 &#8211; 500 epg depending on how many eggs were out of the grid.Â  So I may have gotten a disproportionate amount of females, or this is just the margin of error involved in the process.Â  I know egg count isn&#8217;t definitive of population, since the egg output is supposed to peak at 6 months, and decline more significantly after a year of so.Â  Also, many texts I&#8217;ve read said that Necator lives an average of 2 years, but can live up to 17, but most likely, every year, worms are dying or just moving into middle age.Â  Do female worms go into menopause and stop egg laying?Â  Does it matter?</p>
<p>A light infection is considered &lt; 2000 epg.Â  I was getting a little concerned, when I was getting 1400 epg, thinking, God, I&#8217;m going to move into a medium intensity infection, which is where the iron deficiencies usually strike, and since I&#8217;m already dealing with iron and magnesium deficincies, what&#8217;s it going to be like adding more worms?Â  Both times last year, my Crohn&#8217;s improved while my mineral deficincies got worse, but the first time, I got a series of iron shots that probably threw the low magnesium even lower, and the second time, I got pregnant, which also uses up a larger amount of minerals.Â  Of course, then the miscarriage, so I&#8217;m limping along trying to up my mineral consumption, while still losing it from diarrhea and menstruation every month.</p>
<p>But I feel bolstered that I have plenty room to add and will still be in the low intensity infection range.Â  But I wonder, for those getting 50 worms, what their egg count would be?Â  25 females would be about 1250 epg, so it would still be in the low intensity infection range.Â  And I wonder if we need a medium intensity infection to stay in remission?Â  Would I not have these drops of efficacy if I hosted a higher number of worms?</p>
<p>Oh God, too many unanswered questions.Â  I wish I knew the protocol that would work the best and leave me suffering the least.</p>
<p>Back to the microscope, hoping I can put myself out of my misery soon.</p>
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		<title>This Blog</title>
		<link>http://waitingforthecure.com/I/2010/05/12/this-blog/</link>
		<comments>http://waitingforthecure.com/I/2010/05/12/this-blog/#comments</comments>
		<pubDate>Wed, 12 May 2010 15:04:54 +0000</pubDate>
		<dc:creator>I</dc:creator>
				<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://waitingforthecure.com/I/?p=999</guid>
		<description><![CDATA[It has been brought to my attention that this blog is not encouraging helminthic therapy, but instead is harming people in posting my experience and the studies I come across.Â  My intention was to blog my failure or success with helminthic therapy, as I was one of the first Crohn&#8217;s patients to try it.Â  It [...]]]></description>
			<content:encoded><![CDATA[<p>It has been brought to my attention that this blog is not encouraging helminthic therapy, but instead is harming people in posting my experience and the studies I come across.Â  My intention was to blog my failure or success with helminthic therapy, as I was one of the first Crohn&#8217;s patients to try it.Â  It was very exciting at first, when things improved so dramatically.Â  I felt I owed the IBD community an honest report of what it is like to try hookworms, since I didn&#8217;t have anyone else doing this before me, and would have welcomed what to expect.Â  Also, my doctor was very interested in my progress, and it was a way for me to corral the information I came across, so that other people could learn from it.Â  It seemed at the time that this was going to be an option for very sick people to get well, and the more I could do to help further this therapy, the better for all those suffering.</p>
<p>But my experience has been so roller coaster-ish, that I don&#8217;t know if it&#8217;s a good demonstration of the realities of the therapy.Â  Although each person is so different, I&#8217;m not sure there is a &#8220;normal&#8221;, perhaps this blog, since there are so few, is a detriment rather than a help to people wanting to seek out information.</p>
<p>I&#8217;ve had a lot of positive feedback from people wishing to try this, since they are glad to find an honest report of one woman&#8217;s progress.Â  I&#8217;ve been contacted by CBS, professors, a NY Times reporter, and helminth immunologists, all thanking me for my story, and I was glad to do anything I could to help promote the therapy. I&#8217;ve given enough interviews that I think I&#8217;ve done my share.Â  I also would much rather be known for my business (we&#8217;ve started an urban farm and underground restaurant, and are selling flowers and unusual produce to high end restaurants, and will be starting classes on gardening, canning, bee-keeping, chicken raising, etc.) Â  But if this blog is harming people more than helping, this hasn&#8217;t been my intention.</p>
<p>It&#8217;s hard, because there as so few people trying this still, and there is a desire to have a community, to learn from one another.Â  The incubation process is a big one &#8211; because the founders of the worm companies face such retribution from their actions, they are unable to give guidance as to how to safely incubate and reinfect, and it has been invaluable to me the support I&#8217;ve gotten both on and offline from various people.Â  That has been the main purpose lately for my keeping up the blog; the sense of community and a feeling of we&#8217;re-all-in-this together type of thing.</p>
<p>But if it is keeping people from trying to get well, then it is doing more damage than good.Â  This blog has been a side project that has been appealing in that the hygiene hypothesis is being proven, and we are proving it!Â  It&#8217;s been very exciting to be on the cusp of a whole paradigm shift.</p>
<p>But I&#8217;d rather people get well than be frightened by my experience, so I&#8217;m contemplating taking it down.</p>
<p>I&#8217;m wondering what other people&#8217;s opinions are?</p>
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