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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13 responses to “Fake Out

  1. Hi – Love your posts. I have crohn’s colitis too. Been on EVERYTHING. I’m on the worms now. 7 months. Not working. Where do you live btw? Also, I love your posts. Glad you’re starting to feel better.

    • Hi Debbie! Thanks for the comment… so sorry the worms aren’t working for you. Have you tried a stool test to see if they are alive? I used Metametrix lab in Georgia… very dependable and they know what they’re looking for. I live in NH. Right now though, I’m living in MA due to our housing situation. If you’re around her,e let me know and I can give you the name of the doc I am seeing 🙂

      • Debbie Buteau

        Hi Jenna: I would love to know the doctor you are seeing in NH or MA (You can send it to my email @ mrs.buteau@gmail.com. I am actually going to start Tysabri soon, and thinking about introducing hookworm with my whipworm. Not sure yet. I need some relief! Know what I mean? Anyway, glad to hear things are going better for you! Debbie

      • emailing you right now! 🙂

  2. Hi Janna,

    Glad you potentially found the cause of your flare ups. I really hope things take a turn for the better now. I also started worm therapy around the time you started, however I cannot say if they have helped me. I probably should get tested to see if they are even there, my feeling is they may not be also. However I have been off all medication since Sept last year, yay no more remicade/prednisone. I started taking apple cider vinegar pills daily since Sept in case there was a candida issue, and also read a lot about amino acids and how they affect our condition. I also take L-Glutamine to heal the gut and a few other amino acids to help with stress/anxiety like GABA/taurine. I have tried 5-htp but have since stopped when I read that people with ulcers, chrons/colitis shouldn’t be taking them. Read the warning from this 5-thp supplement:
    http://www.iherb.com/Nature-s-Way-5-HTP-50-mg-60-Tablets/4114?at=0

    I also started taking digestive enzymes with every meal to break down the protien, carbs & fats. I take a supplement that has Pancreatin 4X in it, I have tried others without this ingredient but they are not as effective, food would still pass through undigested. I get the occasional flare ups (from cheating, soft drinks, greasy foods, coffee), but have been doing much better going natural then when on the remicade/pred. I was going about 8 -12 times a day on the medication, down to about 3-4 now.

    Good luck wish you all the best!

  3. Jenna: So weird. I live in MA too! Please let me know your doctor’s name. I live in Melrose, by the way. I actually haven’t had a stool test, I know it sounds silly since I’ve been on the WW for 7 months now, but I will. I also just got approved for Tysabri which I’ve been avoiding forever, but my PML test came back negative.

  4. Thinking about starting the worms but concerned about trying human whipworm instead of pig whipworm, though the former appears to be all you can get. Do the worms work for anyone? All I hear are bad stories but good scientific evidence. Thoughts? I have UC. I cannot bear another toxic, pointless, and brutal treatment that’s just going to give me cancer, anyway. Enough!

    Thanks,
    Fiona

    • Hi Fiona,

      From the research I’ve done and also from reading other patient experiences, I think that human whipworm is the more beneficial worm of the two for UC. And yes, the do work for some! That’s why I gave it a go in the first place. There are online discussion groups I can get you plugged into if you’d like to read about and ask others about their experiences. If you go to my “where to get worms” page, you can click on the links and that will pull up some more info for you. I agree with you– it’s pointless to try another toxic drug! at least when there are still many more options on the table… Good luck and I hope you find what works for you!!

      • Thanks so much. I’ve been reading the boards and talking to some people. I guess I am just wary of doing this on my own, without aid of a doctor, per se, because even though AIT looks safe and reputable, you still can’t *really* know what you’re getting or if the worms in your batch have been adequately sterilized, etc. There’s just no regulation or oversight, which freaks me out! But I guess I’m running out of options.

  5. Jenna,

    I know this blog is old but I am curious on if you still have the contact information for the DR you were using? If so can you please email it to me.

    Thank you,
    Shawn

  6. I’m curious how you’re doing now, and if you moved out of your moldy house for good, or had it remediated and moved back in, or if you’re doing ‘extreme mold avoidance’, i.e., the “Shoemaker Protocol”?

    Thank you.

    • Hi Marcia! I moved out of the moldy house the day I found out about the black mold. The landlord did nothing to mediate it, so we never moved back in. I cleaned all my belongings the best I could to remove the mold spores. We moved to a different state 3 years ago now, and since then I have been doing extremely well. I do not suffer from any colitis symptoms and have not for almost three years. I even went through a pregnancy and now have a one year old!

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