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I killed the hookworms off at the end of April. So now it’s been 2 months hookworm-free. Physically, I have regressed somewhat. Anal mucus is back, most every day, I have more random anal pain. My acne at first got worse, but now looks better.

The hookworms were keeping the Crohn’s in remission, but…too many side effects. And I’m talking about the long term side effects. Not many worm hosters are 4 years into this. At first, I get high and happy from the hookworms, tons of energy for the first week. Then the side effects kick in at the end of week 2 and last until week 8, then the physical improvements begin and the Crohn’s improves.

It took 10 months for the mineral deficiencies to set in the first time. Magnesium loss – manifested at first as involuntary muscle twitches, then toe and calf cramps. Then as it kept falling, anxiety sets in, then insomnia. It suuuucks.

This last December’s innoculation only lasted until April before the magnesium fell enough to start causing constant symptoms. I don’t mind the muscle issues, but the emotional ones become too much.

I had gone on antidepressants to deal with the anxiety and insomnia two years ago. I had to take a combo of ambien, melatonin, benedryl, and valerian just to sleep on the bad nights, and it would still take several haunted hours to fall asleep.

Interestingly, my poor husband, who got 25 hookworms 2 years ago and 25 in December, no IBD or bowel issues, good absorption and digestion, started getting depressed last year and also went on antidepressants. He was feeling overwhelmed and didn’t want to get out of bed. He was having more leg cramps at night, and sometimes it seemed as if he had restless leg syndrome. He only hosted hookworms for me anyway; his walnut allergy never went away, so when I killed the hookworms and he didn’t need to host them, he killed them too. And guess what? His depression lifted, he dropped the Wellbutrin, and 2 months later he is back to his happy self.

Do hookworms cause depression and anxiety? Probably indirectly. They also can eliminate depression and anxiety for some, that happened to me at first. Though they may be manipulating seretonin and other such things in the gut, their constant drain may just deplete the body of certain minerals essential for nerve and muscle function, and magnesium affects the mood and mind, I’ve unfortunately discovered.

Why are other hosters fine? I don’t know. Maybe they have higher dietary intake of all the nutrients. Maybe they haven’t hosted for long enough. But I’m starting to see the advantage of a species that works much more gently on the body.

A few other long-term hosters are having issues too. Bubbleboy just killed the hookworms because he was becoming too depressed and unmotivated. Garin’s sick of hosting them and the constant nutritional supplement regime he takes to keep deficiencies at bay. Jasper was suffering from depression after leaving the US, and had some pretty extreme emotional issues even here, but whether or not the worms had any contribution is unknown.

While some responders are in their first flush of remission, most don’t know that the glory days seem to be the first 2 years, then the worms benefits diminish for some, and most need to go back to a cleaner diet, or start building to higher numbers, more species, or both. There are enough people doing well longer term that it’s worth pursuing, but I’ve only seen a few lucky people who are in remission for years without issues. Some lose their worms and just need redosing, some lose benefit, or like some of us, suffer too much from the negatives.

I left all the worm forums since there are a handful of diehards who have gotten great benefit from the worms, and seem to have their blinders on. They will not tolerate negative talk about one’s provider, my reflections on magnesium deficiency are met with so much derision (it couldn’t possibly be the worms, my blood tests, my husband’s experience, other hosters suffering the same muscle issues, it all must be suspect or I must have ulterior motives to bring down the worm world)…let’s just say it’s not supportive or very balanced. I miss the excellent links to all things Old Friends, worm-related, or autoimmune, but I don’t miss the drama.

I wish every experimenter luck- if the worms work for you, enjoy your first two years. Pay attention to symptoms of iron or magnesium loss, preventive supplementation may be better. For me, bringing up my mag levels has not been easy – too aggressive supplementation and I get diarrhea, the shots hurt and only last for a few days. I’m still twitching and cramping somewhat, but I have abandoned my antidepressant for the first time in 2 years and I’m sleeping without aid and have no anxiety. PMS is also a lot milder.

I really should get a colonoscopy and see where I’m at. I did just reach 170 POUNDS (I was down to 138 lbs last summer), though I need to cut back on chocolate treats (honey based) and cheating with tostadas and corn chips-I’m starting to collect fat. I’ve been biking a lot more, though sometimes I wonder if it makes my butt ache. I think the IVig, the probiotics (VSL#3 DS and multaflor,) and diet are pulling most of the weight.

The neverending experimentation continues, I still hate having a colostomy and dream that I can get it reversed. I’m enjoying feeling so strong and heavy. Mostly, I’m trying to get on with my life and support my children through their lives, help heal the trauma of Mommy’s rough last few years.

But the hookworms are dead and gone, and I will probably not host them again. They work for my Crohn’s, but not my sanity.

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… 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….

Well, the fecal transfusion failed to keep my CRP down.  Last time I checked, a week ago, it was 16.   And things are worse now, so I’m sure it’s even higher.  I don’t blame the fecal transfusions, since before, when I tried to come off antibiotics, I only made it 5 days without it descending into mushy stools and nighttime trips to the bathroom.   The interesting thing is I’m still having formed stools and almost no mucus, but what’s scaring me is a weird pain that feels right under my vagina, and a very full and inflamed feeling rectum.  I ignored too many symptoms last Fall waiting for the worms to work and ended up with 3 abscesses, and I don’t want to go down that route again

So today, relucantly, I go back on antibiotics, and I guess I’ll never see what the hookworms that reside in me are going to do.

I’m going through the hoops to try Prochymal.  I have a nurse today (that I’m going to cancel) come show me how to do Cimzia.  I think I’d rather try stem cells then another biologic, since Humira only made me worse.

I went to a new naturopathic MD, Dr. Cowan in San Francisco.  He has a protocol of supplements and drugs (all of which I’ve tried), including LDN, GAPS diet, fermented turmeric, boswellia, s. boulardii, e. coli Nissle, and Biokult.  I started 3 mg. of LDN two nights ago, couldn’t sleep the first night and felt a little happier yesterday, last night was fine, no side effects.  I tried LDN in the past, got it wrongly compounded, switched to Skip’s pharmacy and seemed to get better, then I broke out in a weird rash all across my butt, it was thought I was allergic to sulfasalazine so I stopped that, made a yogurt making mistake, and flared miserably.  So I came off the LDN to go on Prednisone.  I tried it again later and it didn’t seem to help.  But I’m always open to trying things a third time, even if I’m despondent about it.

He took one look in my mouth and said, “I don’t think you’re capable of fully healing with how many amalgams you have in your mouth.”  I have 7: 3 of which are huge. I’m pretty sure they were all put in the year I got Crohn’s, so it’s always been there on the back of my mind that mercury poisining is contributing to the Crohn’s.  The interesting tidbit is I always itch when I wear anything other then gold in my ears.  If  a closed wound reacts to metals, imagine what my body does to mercury vapors coming out constantly when I breathe and chew?

It’s something I’ve been wanting to do for 13 years, but I was either nursing or pregnant, or too poor.  I thought I was going to get a refund from AIT in the middle of March, but I have no idea if this is still happening.  It will help pay the $5400 it will cost to get all of the mercury replaced with composites, but the trips to SF twice a week will add up fast, especially as we currently have no car.   I’m supposed to go up to San Francisco twice a week to start the detox process.  Whether or not it will make any difference remains to be seen, but Dr. Cowan told me to expect that it will take 3 years to fully rid myself of the mercury.  I guess I won’t be having another child.

To say I am disappointed in worm therapy and everything else is a huge understatement.  I still think the right combination of worms will help me, but how the hell do I get them into me without a severe reaction?  And why is my body now churning out anal abscesses when it never has before except the first time I was diagnosed with Crohns?  Why am I now dependant on antibiotics, and need something like Cimzia or Prochymal just to get me off of them?

I love reading success stories.  And I’m insanely jealous of those with almost no side effects.  If that were me, I would redose in a heartbeat.  But the side effects from TSO were so severe, even 60 mg. of prednisone didn’t curtail the flare for days, and later, that’s when the abscesses formed, after coming off the pred.  I feel like it’s happening now in another location, so I go back on Augmentin full dose, and pray that it doesn’t cause some superbug that I will never get rid of.  I still plan on doing fecal tranfusion after coming off the antibiotics again, since we’ve got the hang of it and it’s no big deal anymore.  And the best way I know to restore the colonic bacteria.

I have to have a CRP > 5 and a CDAI over 250 to qualify for Prochymal.  I’ll also have to do a CT scan, which I hate, since I already had 2 this year.  But it seems like a way to temporarily alter the immune response, heal tissue, etc.  My UCSF GI has one patient who was in the earlier trials who failed Humira and Tysabri, who is now in remission 2 years later and considers herself “cured”.  I’ve also read threads on healingwelll that say it only lasted 3 months, but I’m really just buying time to get through the initial mercury detoxification, and perhaps redose with worms, have the LDN have a few months under my belt, and see if the e.coli Nissle + diet can make any difference.

I’m losing weight, which I hate.  My formerly lovely 165 self is down to 150 and I look skinny.  A diet of broth and soup isn’t helping.  Dr Cowan wanted me to go back on the intro diet for GAPS for 3 days, then do stage 2 for 3-7 days, etc.  The antibiotics will probably make me nauseous again, which is a plus when you’re not really thrilled about your food.  My daughter’s birthday was yesterday, and I watched my family enjoy a pizza, flourless chocolate cake, and coconut ice cream, while I ate my 6th bowl of the same beef stew and felt the strange pain forming under my vagina in my rectum, and thought of everything I’ve tried and failed over.  I woke up in the middle of the night, since my daughter slept with me and I didn’t want to show her my misery, and cried and cried at everything that hasn’t worked.  And then went back to sleep and dreamed, forgetting my pain for a little while.

Oh well.  I carry on.  We went to the SPCA yesterday to find a puppy.  There was one that was perfect; an Australian sheppard mix who was so friendly.  When we asked to see her, we were told she was on a 24 hour hold and was going to be adopted tomorrow.  All of the other dogs were either chiuauas or golden retrievers.  We did find a possible cute other one, but were told it was extremely shy, so wouldn’t fit in with our social lifestyle, with neighborhood kids coming and going all the time.  On the way home, my daughter cried and cried and said she’s giving up on finding a dog.  I told her that we had to keep trying, and reminded her of the little cross she once picked out with my mom when I was doing really badly.  It says “Never Give Up”, and when I’m crying at my extensive failures stacking on each other and still sick, she reminds me that I should never give up and some day I will be well.

It’s hard to believe after 24 years of disease.

What’s worse is being in remission for over 2 years on a small handful of worms, then going an entire year of redosing and getting worse and worse.  If they never had worked, it would have been easier.  I’d like to think the mercury amalgams are preventing my whole healing, but then why would the worms work for a while?  Why would I have been in remission in the past on diet alone?   I don’t have severe Crohn’s, I have moderately severe Crohns (as if that’s any better), but I thought if I just kept some worms in me, ate the right diet, and did a fecal tranfusion,  exercised, meditated, walked barefoot in my garden, etc, that I could approach some semblance of wellness.

So it’s back on the antibiotics, searching for “what’s next’.  In 2007, I had the choice of Procymal or worms.  I chose worms.  Now I’m having to choose Prochymal.  Oh well.

Never give up.

So I’m at a crossroads. I’ve been using hookworms since Dec. 2007, with up and down results. I first tried 10 hookworms and was very sick; had an extreme reaction (fever, diarrhea, edema, arthritis) but that went away and I was so much better by month 4 it was a miracle. But I redosed in “trickle therapy” style which was 2 worms every week or every week, and I regressed. 

I found out I lost my worms months later, and reinfected with 10 more hookworms February 2008. This time, I had minimal side effects and had great effects, reaching normal CRP and was able to eat off my diet (SCD) which was a mistake probably. I started developing magnesium deficiencies and low iron; did iron shots and that caused weird nueropathic stuff (I didn’t know I was mag deficient then) and that was hard…

I did well for about 6 months Crohn’s wise, and was doing egg counts by then, started regressing and noticed my egg count was declining; I reinfected with 10 more hookworms 7 months after the last ones, and was back to normal CRP within 6 weeks. I got pregnant though, and had terrible deficiencies then, anxiety and insomnia, went on an SSRI and sleep medication, rode it out, had a misscarriage, lost a huge amount of blood and became iron deficient…but the Crohn’s was doing prettty well.

Pretty well was normal CRP and mostly normal blood, gained 25 pounds and was keeping it on, able to bike, exercise, I looked good. I finally figured out the magnesium issue and started a long road of shots, supplements, baths, etc. I’m still dealing with this issue.

I never stopped having rectal mucus, but was sleeping through the night and had mixed stools. This is where I think diet plays a role, since I was eating most anything.

About 6 months after the last infection, I started regressing again, and my egg count was going down. My cRP started to rise. I couldn’t access the worms until over 3 months later, and by then CRP had risen a lot and I had a lot of mucus and symptoms. I tried 15 hookworms, but with the existing inflammation and the quanitity of worms, things got bad at week 3 and I went on Prendisone temporarily. This worked great, and I had weaned off of them almost completely, was doing better by 9 weeks and decided to try TSO. The first dose caused about 3 days of worsening, the second dose 1 week, the 3rd dose caused severe worsening, and I had to go back on Prednisone.

And then my egg count dropped and I decided to add 10 more hookworms; this was November, 5 months after the previous dose, and I went through the extended side effects AGAIN, weaning off prednisone, and finally ended up with 3 small rectal abscesses . (Which I haven’t had for 23 years, and then, only once , when my Crohn’s presented.)

I reluctantly went on antibiotics (waiting too long and ending up in the hospital for 10 days): first Cipro and Flagyl IV, then 4 days of oral, then I switched to Augmentin for 6 weeks. At first, it was bad, but I upped my probiotics (VSL and s. boulardii) and finally, a month ago, I had solid stools and was feeling a lot better, mucus gone for once.

Amazingly, the worms survived the experience and I have the same egg count (600 epg) before and the last 2 times I’ve checked post antibioitc.

I had an MR endoscopy 2 weeks ago, which showed minor thickening in the rectum and sigmoid, but no fistulas and the abscesses were pretty much gone. CRP was back to normal. So I came off the antibiotics last Monday, started feeling nauseous on Saturday. Started GAPS diet (SCD but with lots more probitics, basically paleo at this point) but I’m still nauseous 5 days later and stools are getting looser, and more pain.

My doctor wants me to go back on antibiotics at least till I see him (this Tuesday) and to start Cimzia ASAP.

It’s been a really trying few years; I had such high hopes for the worms but think they contributed to the abscesses (and the TSO and prednisone).

I guess my plan at this point is try the Cimzia, see if it can buy me some time for me to get off antibiotics and for the worms to work, reinfect every 6 months, and see if my diet and probiotics can stretch the shots out so that I’m on diet and worms again. TT is in question now, but maybe on the Cimzia I could tolerate them better?

Any advise would be welcome.


Since I have to go on antibiotics for at least a month or more (Cipro and Flagyl, the worst offenders)  I’m going to log off on this blog.  It’s been an interesting 3 year ride.  What I’ve learned:

  • Dose as infrequently as possible.  All of my doses *may* have led to an increased immunity to the hookworms, judging  by the increase in side effects and inability to hold on to the infection for long.
  • Don’t wait to redose until you are inflamed.  Then things get worse, with all the nasty consequences.
  • Don’t wait too long to use western medicine if the worms are failing to control your disease.
  • Don’t expect the worms to do everything.  Use them with diet, other supplements, exercise, meditation, etc.  Even if the worms allow you to eat sourdough bread and Thai food for the first time, resist.

May you have a much easier path then me.  I wish you all sweet remission, no worm side effects, and a pain free life filled with chocolate.   Goodbye.

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