Tag Archives: autoimmune diseases

Fake Out

WOW I feel negligent. Sorry for keeping you guys in the dark for 4 whole months. Not like your very existence is dependent on my blog posts and bowel situation… but y’know.

Ready for the final chapters?  I say “chapters,” because not only is this post 4 months in the making but it’s going to take about 4 months to read. Procrastination is a friend to no one. My apologies.

And I say “final” because, here it is–  I am quitting the worms. QUITTING with a big, fat, capital Q.

-U-I-T-T-I-N-G.

Can I tell you something you already know?  Life is crazy/weird/interesting/unpredictable. Especially when you’re living with a chronic illness and trying to put your health back together piece by piece.

Chaper one: November

November came and went with no big issues or complications. False. November was in fact, insane. We had been hearing some kind of animal in the attic of our house. In reality it was probably just Stewart Little, but it sounded like an entire family of raccoons clawing their way through the ceiling. Not okay. This might explain my hysteria. Who says the media is desensitizing again?

So the week before thanksgiving my husband went to check out the attic monster. What he found was way worse. A tiny monster, if you will: mold, mold, and more mold. billions of black mold spores sheeting the entirety of the attic.

In case you’re not up on your mycology, black mold is extremely toxic, especially to those with a compromised immune system (i.e., me). So you can imagine my partial dismay upon it’s discovery. Partial only because, well, we found it, so that’s a plus. Everything else about it is a complete minus. We peaced outta there that night and decided to stay with my parents until the problem could be taken care of. How in the heck Stewart little and/or the raccoon family didn’t immediately die up there upon entry, I’ll never know.

I went to see a new doctor the next day (WHOM I LOVE) and I brought up the mold situation. She said in no uncertain terms that we were never to live in that house again, even if the mold was eradicated. and suddenly we are houseless! Keep the good news a’comin.

Fake out #1: Stupid mold! I had been battling with candida for months wondering why I couldn’t get rid of it. Turns out, it’s hard to treat a yeast infection when mold is constantly feeding it. Real hard. Nay, impossible.

More on the new doc (WHOM I LOVE): I had an hour and a half discussion with her about all the diets, supplements, therapies, clinics, worms(!), and concoctions I’ve tried over the years. I was basically at my wits end not knowing where to go from where I was. I even suggested doing a fecal transplant using my hubby’s poop (he has the greatest poop imaginable… like national geographic pretty). Yeah you heard that right, get your jaw off the floor! poop poop, wormie worm worms, poop diarrhea. this blog is graphic.

Anyway she has had patients with UC that have become completely healed on her protocol. I’ve heard this about 8 times before from other docs, but her method was simple yet unlike any other. She does a stool sample, checks for parasites, overload of bad bacterial, checks the level of good bacteria, checks for candida, etc. then she treats, tests again, treats, tests again… and then focuses on healing the gut. Step one? Walked outta there with a poop kit, blood test form, and a job offer. Really cool combo.

Chapter Two: December

After a few weeks of being exiled from mold kingdom, I went back to the gyno. Yeast infection- POOF! gone. come back never. That was good news. Diet, drugs, supplements, and clean air did me good this time.

Then my test results came back. The blood test was super. Best my blood has looked in a while (thank you, Standard Process supplements). Iron was great, vit. D level was near perfect, and my liver weathered the diflucan storm with ease. Nothing however, indicated that I had a parasitic infection ( no worms? )… Poop test came in as well.  My colon was clean of candida, my levels of “good” bacteria were satisfactory (7 years of taking probiotic supps will do that to a girl) and, brace yourselves.

Fake Out #2: NO worms. No eggs, no bodies. worm babies ain’t in there.

So I’m annoyed. There are so many variables to think about. Consider the possible scenarios:

  • The worms were DOA (dead on arrival). It seems suspicious to me that I took three doses of worms, months apart, WITH prednisone, and none of them stuck.
  • Of course there is the possibility that my body just didn’t let them stick. In which case, I would have given this therapy a fair chance and there would be no question in my mind as to whether or not to repeat the process.
  • The worms stuck, but were killed due to something on the huge list of things you cannot ingest whilest a host.

I think it was option one. I really do. But at this point it doesn’t matter, because by the time I received the results, I had planned to kill the worms anyway since they clearly were not helping.

But WHY did I think I had the “worm flu?” why was I suffering from all the typical symptoms? Brain fog, stomach aches, tired, fever, etc.

The test also showed that I had an overgrowth of an opportunistic bacteria called Citrobactor sp. Normal levels of this bacteria are a 1 or less, mine was a 7. Go big or go home. Turns out a nasty overgrowth of citrobactor mimics the symptoms of Candida. Candida symptoms can be mistaken for worm flu. Therefore, citrobactor can be mistaken for worm flu. The symptoms of toxic mold exposure also overlap with worm flu.

Candida=citrobactor=mold=worm flu.

mind blown.

Fake Out #3: Did I just get tripple deked? Yeah, that was a Mighty Ducks reference and yeah, that just happened. I know I had candida and Citro and mold  for sure, but I don’t know about worm flu… either way can you guess how marvelous I was feeling for all those months?

So it was not just the placebo effect. I did actually feel like crap. Just… not for the reason I wanted to feel like crap.

But if we are being serious is there ever a reason you want to feel like crap, other than child birth where a baby is your reward? I think not.

Then there was that post I made about some kind of perceived progress. Thinking back, the two-ish weeks of “feeling better” that I was referencing turned out to be the same time frame that I was in Florida. AKA NOT in my house of mold.

Are you enjoying this puzzle as much as me?

Tis the season to be jolly! fa lalalala, la la, gah gah.

I started on an antibiotic (gasp! forbidden! I know, but it was the only way to knock out the cipro bug) and was on that for 3 weeks. Know what? Stools became formed, less blood, less stomach cramping. Never thought an antibiotic could be so stomach friendly. I still took probiotics to replace the good bacteria. No need to get completely crazy here.

Chapter Three: January

Finished the antibiotic, re-tested, and waited for the results.

Chapter Four: February

Results are in! Citro is DEAD and gone. love it. However, I experienced some set backs. My poop is almost always diarrhea now, and there’s more blood and mucus happening. Urgency is, well, urgent.

Also, I turned 25. gross. who does that?

Chapter Five: March (so far)

Marchity marchmarch. Went to my favorite new doc who I have referred 6 people to so far. Did I mention I love her? Since the bugs are gone and there is nothing antagonizing the intestine, it is time to heal the gut.

“But you’ve been trying to do that for 7 years!”

I knooooow. But who knows how long I’ve had huge bacterial over-growths? Now that those things are out of the way, I’m in a much better position to heal. after my gut is healed and able to absorb nutrition, I can focus of piling in the good stuff. Like, biotin, for my ever thinning hair.

Here is the protocol for said gut healing:

Intestinal Repair Caps— chalk full of all kinds of butt-kickin’ healin’ stuffs.

InflammaCORE— basically the caps, but in powder form to make a shake. Also chalk full of gut goodies. and consequently it tastes a little like chalk (the cherry kind).

5-HTP spray— this is a neurotransmitter spray that is taken sublingually  (under the tongue). It is a precursor to serotonin. If you have a gut problem, you almost for sure don’t make enough serotonin, because serotonin is made in the gut. Not enough serotonin= angry gut, angry gut= not enough serotonin… and the ensuing chaos is endless. No one has EVER mentioned this to me before and I’ve been in this business a heck of a long time. Finally, some new stuff on the table. Look up the gut/brain/serotonin connection if you’re curious. Not enough serotonin can also cause things like anxiety and depression.

So that’s that.

They say March is “in like a lion and out like a lamb.” I’d like to transpose that saying to reference my colon.  Please be so. Amen and Amen.

Since this is a worm blog, I suppose I should talk more about the worms and detail my choices regarding the therapy. I think I’ll give that subject it’s very own post, so it doesn’t sit here at the bottom of this one…. as many have fallen ill, had grandchildren, or at the very least, dozed off during the time it took to read this gigantic stream of consciousness manuscript.

overandout.

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Progress! (and name meanings)

Time to break out the capital letters and exclamation points, party people, cuz I’m doin’ BETTER.

!!!!!! and !!!! and yeahyeahyeah!!!

I know, right!? You probably weren’t expecting that after my last few posts (why you hatin’). But I have, to my surprise too, turned the proverbial corner from expectant patient slash experimenter to a semi-decent success story. I’m almost to scared to be writing a “good” update in case it ends up being some sick coincidence… yet I write. because I like you guys.

So why only “semi-decent?” It’s an odd term but I use it because there are levels of success in this colitis business. Usually for me anyway. Not to many of us can go from zero to complete awesomeness. True success, in my poop dictionary, would be a return to normalcy– living virtually symptom & anxiety-free. By these standards, I’m only at the semi-decent success level. I would have loved to be a full-on success story like Mike from Colon Comrades, but whatever; beggars can’t be choosers.

So here I am, on day 136/108/80 of my whipworm journey and I can say that I’ve felt a measurable amount of relief from my worm babes. I would say around the week of the 120th day of the 1st dose I started to notice a difference.

  • I got through my last two periods with little diarrhea and zero blood.
  • Speaking of blood, I haven’t bled significantly since the middle of July! Occasionally I will have a few spots on the TP, but who cares? I know I don’t. It’s such an unreal departure from filling the bowel, I just can’t get worked up over a few spots.
  • The mornings usually are ridiculous for me. Before I even have time to open my eyes I have to sprint to the bathroom. Now, I can lay there for 30 seconds before a stomach ache develops, and depending on its severity I’ll lay there for another 30. Then I’ll have time to get up and grab a robe and slippers before I make my way down the hall (walking, not running). I’m not sure you realize how monumental this is so let me tell you: I haven’t had the time to grab slippers in 6 years. My feets are so happy.
  • I’m finding that although I still gotta-go-when-I-gotta-go, I can hold it for just a bit longer. Like if I’m in the car I might have a chance to make it down the road to the next bathroom. That’s great, man. I would take stomach aches all day long in exchange for being able to “hold it.” Thankfully in this case, I’m experiencing a little bit of having my cake poop and  eating holding it too. Not a bad way to walk around lemme tell ya.
  • I’m having to use the bathroom 3-4x a day now. Mostly in the mornings, I’ll have maybe 3 bowel movements. Usually it takes this pattern: 1st movement is formed, 2nd is loose, almost diarrhea, and 3rd is formed again. I’ve had some real good lookin’ movements in the past few weeks. Its weirdly appropriate they are called movements too, because it’s like music to my eyes. heh!
  • Prednisone you wonder? I’ve been successfully able to wean my self completely off (as of Sept. 1). So far I haven’t had any real set backs, besides feeling a few more colitis cramps throughout the day. This is also huge, since the last time I came off pred without flaring was two years ago. holla!

Oh, and my hyperthyroid condition? Peace out. I have been taking a natural supplement called Thyrotropin PMG from Standard Process since I was diagnosed a few months ago. I also increased my vegetable intake to include more that are said to decrease thyroid activity. My levels that were tested last month came back perfect. Great news. Now I know my hair loss is strictly prednisone related, so hopefully I won’t go bald any time soon.

While it seems like I have found the silver lining, the one bad thing is that I’m still fighting unnatural amounts of fatigue daily. I am exhausted all the time. If 10pm rolls around and I’m not in bed I start experiencing like, restless leg syndrome or whatever that is. It’s not pleasant. Even today, I slept for 9 hours last night and then just work up from a 3 hour nap. What is my problem? Did anyone elses’ worm fatigue last this long? Headaches, too. Lots of those happenin’. Please chime in if you have any ideas 🙂

Anyway, the other night I was talking with a friend and my husband about name meanings. “Do you think that your name shapes who you become?” There were some mixed answers and then I realized that my name, which means small bird (or heaven) in Arabic, definitely applies: “Jenna” means small bird… and I eat worms. It’s a little too perfect not to be creepy.

Whipworm in mah belly, belly

Dear friends, family, and strangers who read about my bowel situation–

I’ve been holding 0ff on updating in hopes that in my next post I could use an obnoxious amount of exclamation points and maybe even an offensive amount of capital letters to describe how [AWESOME] I’m doing!!!!!!!!!!!

Buuuut. alas, the struggle continues. Things are still where they were in June, for the most part. Let me do my “day to symptoms ratio” layout and then we can discuss bigger and better things:

Day 67/39/11: One week into my third dose. Ironically the second and third doses seemed to make me more tired and dragging than the initial dose… Could be because they were larger by 200 eggs, but who knows. I had one or two episodes of straight diarrhea in the week that followed (mostly my stools are loosely formed), some blood but a definite decrease from the weeks before. I love seeing no blood. Naturally I thought the worms might be kickin’ in.

Days 74/46/18: Say hello to the month of July! oh, and menstrual week. Sorry to go here but I have to for full disclosure, you understand. Basically, I want to go into a coma for a week out of every month. Nay, two. Two weeks. I have two bad UC weeks when Aunt Flow comes ’round, complete with days of diarrhea cramping and blood loss. and then it takes me a weeks to recover, then I’m back where I started. See dialog below:

Me: “Another month down, hopefully next month won’t set me back.”

My hormones: “BWAHAHAHA MUAHAHAHAHA LET’S WREAK HAVOC!”

All mah Ladies– how do you deal with this and UC? Aside from a birth control pill which I’ve tried… and Red Raspberry…

So. Not a “good week.”

Day 81/53/25: This week the blood has decreased again but my stools are looser. yay diarrhea.

Overall: Going 5-6X a day, though sometimes I’ll get lucky and only go about 3. Urgency is still a huge factor, so I carry my paranoia around with me like it’s worth a million dollars. Um. Still on 10mgs. of Prednisone. I’m thinking about tapering it regardless of my symptoms because I’ve been on it for 6 months now and I can’t keep doing this. Plus, the worms are past their 2 week buffer time of needing an immune suppressant. Decisions.

Remission is generally felt around week 14, which is next week! AH. The thing is, if my first dose of worm babies didn’t take, there is a chance my second dose did, so I have to wait another 4 weeks to see if I experience any relief from those little guys.

Emotion check: I haven’t lost faith in HT. I have no doubt it has helped many people get their lives bank and place them on a truly different level of health– and I’m so happy for them. I hope to join the ranks of success stories, but I understand that UC is an extremely complex disease and therefore not everyone can or will, and I have to be okay with that. Still, it’s early. Stay tuned.

and now for bigger and better things as promised.

So my husband has this sweet app on his ipod.  If you sing/talk into the speaker and it will “songify” your message (yeah, so I might still be in 6th grade, so what if I think it’s cool). Tonight he said, “hey sing something into this.”

I sang, he played it back, and it was downright amazing. It’s a little something I call “Whipworm In Ma Belly.”  (<-click for song)

Enjoy.

Episode 3

Some days, you really just need a break from being sick, y’know?

Last Thursday was that day.

Bad, bad morning.  Stomach aches, diarrhea, and blood. Had one accident and a another extremely close call. (Dunkin Donuts, your food makes people sick but I love your bathrooms and the fact that you are located on every street corner.) I don’t know about you, but every time “accidents happen” I get pretty low. I can go days feeling like I’m in labor with a 17 pound baby but when that happens, it’s a different low entirely.

So. what could remedy a spirit such as this? Sun? hmm. maybe… Sun and a lounge chair? getting warmer… Sun and a lounge chair and some more worm babies? Bingo.

and THAT’S how it’s done.*

Nothin’ like sippin’ eggs in the sun to put a smile on your face.

But seriously, Thursday happened to be dose three day and we got it done.  400 more whipworm ova are now swimmin’ around in my gastric juices. That makes 1,000 ova all together.

Two words: Game Time.

I’m so hoping these babies kick into gear soon. Since I last updated bout 2 and a half weeks ago, things have only steadily gotten worse. Here is a run-down of the days-to-sickness ratio:

Day 46 of the 1st dose (18 of the 2nd): Stools began to become less formed, and at least one bowel movement of blood. When I talk about blood, I mean that in real very terms– a few blot clots, and literally all of the toilet water is bright red. It’s Christmas far too often around here.

Days 47-50 (1st)/20-23(2nd): A good four days of one bowel movement of significant blood per day. Still going 6x a day, barely formed stools, plus some minor stomach cramps.

Day 57/29/1: This is the Thursday I’m talking about. Dose three. 400 more ova introduced.

Day 59/31/3: Horrible blood loss about 3x that day. Stomach ached all day long, general feeling of crappiness…

For the past several weeks I’ve been bleeding almost every time I go, though I’ve only recorded for you the most significant days of blood (feelin lucky yet?). I’ve been feeling tired and weak as well. Still on the 10mgs of Prednisone daily. I’ll admit, I get a little worried when I read about my fellow-wormer’s experiences. By most (good) accounts, I should be feeling better by now– especially since my helminth of choice is human whipworm. Yet, my stools are less formed than they were a month ago and I’m bleeding way more. Anyone have any insight on this?

As much as I love to panic….  it’s still too soon for that…

So anyway that was episode three down the hatch. Let’s hope that it’s not an epic fail…  like this scene  in the other Episode 3. (welcome to how my mind works…)

Welp, maybe next time I’ll have somethin’ great to write. hope. so.

See ya!

*In case you’re thinking about it, don’t ever sip your ova through a straw. Sometimes I’m guilty of staging things for dramatic effect  😉

Keepin It Real

It’s officially been a week since I threw back the creepy crawlers.

Still alive? Check. No anaphylactic shock? Check. Worms still cookin? Double check. Over all this week wasn’t bad. Here’s a run down of notable events:

Day 1- 3– Life as usual

Day 4- 8– I experienced a little extra nausea in the mornings. I say extra, because this is generally the case… just seems to be a bit amplified. However that could be because my head has been in a constant state of brain fog/headache. I’ve never been there but I’m pretty sure this is what it feels like to be hung over.

Day 6- 8– BM’s, though still formed are getting softer and less formed… going more often, maybe 6x a day now. More cramping and pain than usual and some blood, but nothing that makes me want to throw myself against a wall.

So that’s where we are. Correction, me. That’s where I am. I’ve read that day 12 or 13 is when the worms molt and migrate to the colon, so that’s when I will most likely experience the bulk of any unpleasant side effects. Good times. But seriously I can’t wait for them to jiggle down there.

In the interest of full disclosure, let me tell you what else I’m doing:

  • Probiotics. I’ve taken them non-stop for 6 years, and tried all different suppliers. Right now I’m taking Primal Defense. For all I know it works just as well as anything, and I don’t have to keep it refridgerated which just makes my life easier.
  • VitD. Gotta have this throughout the New England winter.
  • Biotin. Did I mention I’m losing all my hair? My doc told me this would help. It doesn’t stop my hair from falling out but it does help new hair grow back. It’s times like these I wish I was a boy so I could get a buzz cut and call it a day.
  • Multi-Vit. Plan and simple. Gets the job done.
  • Iron. Last time I had my iron levels checked they were not surprisingly lacking, so I’m on a supplement for the time being…
  • Biological meds. I take several homeopathic “tinctures” and pills, before and after meals. They are whats left from my trip to Switzerland where I was being treated with Biological Medicine at Paracelsus Klinic in November.
  • High-dose Vit. C infusion. I get a high dose of Vit C along with some other homeopathic meds from Paracelsus pumped in me through an IV every Friday. This helps boost the immune system, which is especially important as being on Prednisone lowers one’s immunity.
  • Prednisone. 15 mgs. boo. give me back my hair.
  • Gluten free/Dairy Free Diet. Even though gluten and dairy are found in 90% of foods, this is the easiest diet I’ve done since getting sick. I don’t even mind it. Do I miss real bread? Um, yes. a million times yes. Is eating it worth bloody diarrhea? NOPE.

Otherwise, I try to exercise 30 min. a day, 4-5x a week. My bones are crack’a’lackin so I decided to get movin before I can’t move…. and I’ve come to terms with the fact that when I squat to sit on the toilet, no matter how often I do it, it doesn’t actually count as a real squat.

So, that’s basically week one. Tonight my husband and I are planning on taking a trip to the mall & you can bet I’ll be carrying a my usual “spare pair” (that’s a spare pair of underwear, for those of you who are confused at the term because you don’t poop your pants or are not yet over 90). Needless to say, while I wait for my worm babies to do work… I’m not banking on any miracles… just keepin’ it real.

Worm Babies

Last night I had a completely adorable four year old girl ask me if I had a baby in my belly. (fat joke?) I had to think about that one for a second. I may not have a baby in my belly, but I have about 200 whipworm eggs ready to hatch, migrate to my colon, and dig in.

Wait… what?!

Listen, we all have our dirty little secrets. Mine just happen to be the parasitic worms chillin in my guts. Last Thursday (April 21st), I swallowed my first dose of human whipworm in an effort to end my 6 year battle with severe Ulcerative Colitis. A quick read of my “About” section will tell you how I was introduced to this treatment, and why I chose it. But since some of us don’t have that kinda time, let’s just jump right in, shall we?

Lemme hit you’wit some baselines.

  • I’m 24, female, and on the lower end of a “healthy” weight.
  • I’ve been through the absolute worst with his disease. When your GI looks at you and says, “I don’t want you to go home and cry or anything, but you could die at any minute,” that’s a problem. and he’s maybe not a nice man. Regardless, I was able to pull myself back from a 30lbs weight loss (down to 90lbs), what could have been heart-stopping anemia, and a grueling 15- 20x a day sprint to the bathroom by doing alternative therapies, emotional techniques, lots of prayer, and hard-core diets. Oh, and prednisone.
  • Ah yes, prednisone. The drug we love to loathe. Pred is the only thing that can calm a flare, although even that is getting increasingly less effective. I’ve been on it for more time then I’ve been off it, and my body is already starting to show the long term effects of it. Blurred vision, hair loss, achy, cracking bones, shooting bone pain… I’ll be in a wheel chair very soon if I don’t get off this crap. or blinded by cortisone induced glaucoma. and THEN how would I get to the bathroom???
  • Right now I’m in a decent place. By decent place,  mean mostly formed BM’s, 3-5x a day, little or no blood, not very much pain but the urgency is still a huge factor. Again, this is all thanks to the prednisone. I’ve been on it for about two months to stop a flare I had in Feb/March. Now that I’ve begun the worms, I’ll stay on a dose of about 15mgs for a few weeks to counter any side effects while the little guys settle in.

And since I always loved show and tell…..

“These are my worm babies.”

Arranging to get them shipped from the AIT to my house was a little tough. Huge thanks to my Dad’s friend Bob for helping me bypass government red tape.

I’m taking three doses every 4 weeks. D1= 200, D2&3= 400, which is 1,000 altogether. There has been some evience that people with severe colitis respond better to doses rather than the typical 1,000-at-once. We’ll see.

Just the thought of being “normal” again is staggering. What the heck would I even do if I knew I wasn’t leashed to the toilet? Probably not make this creepy, Im-about-to-eat-parasites face.

The thought of just shooting them down straight outta the vile as soon as I ripped the package apart was pretty tempting, but since my husband filmed this monumental event I salvaged the little bit of propperness (not a word) I have left and dumped it into a cup of room-temp water.

Tasteless, painless, clean. This beats a colonic every time.

worm babies, do your thing.