#slayingSIBO or Something Else? UPDATE

I mean, is it really that surprising that I’m hitting you with yet more diagnoses?

The #slayingSIBO saga began when, after two years of total digestive frustration, I want to a gastroenterologist and they made me blow into balloons and tested my breath and told me I have SIBO (you can check out all my posts om that, here).

Then I was told I may not have it because the pipes weren’t workin’ (if ya know what I mean) when I took the test, and told me to just take Miralax every day the rest of my life. I shot my best mean mug at the doc, and she said, well fine, you can take the antiobiotics anyway. (I apparently have an effective mean mug).

If you’ve been keeping up, you know I moved to working with a functional doctor after being completed unimpressed with this gastro, and I’ve been going through MORE tests, some that insurance won’t cover (Annoying. Hey BlueCross – I’m not getting my poop tested for vanity, just sayin’.)

The Update:

So after more and more tests, here’s what we know:

Finding #1: I have active EBV and some other mono-causing virus antibodies, and my body is having a hard time detoxing.

I had a “mono-like” illness in 2011, my sophomore year in college. It was awful. From that point until I got my tonsils out at the end of 2014, I had recurring strep infections every 3 months like clock-work. Once you have a virus like this, you always have it. It can go dormant and undetectable, but it can always flare up. So who knows how long I’ve been dealing with flare-ups from this… BUT we have to get it under control. When your immune system is compromised, everything goes to hell in a hand basket! And I’ve been hit with a double whammy – I have an autoimmune condition (Sjogren’s), so I have to take extra care here.

My liver enzymes are also elevated and my kidney function is less than ideal (which again I knew). This is probably due to the immune response and my toxin load from these nasty viruses, so basically I need to help my body with detoxing.

Solution:

Obviously there is no quick solution to this, but focusing on building and supporting my immune system is key right now. Some of the supplements I am taking are:

  • Colostrum (it’s gross)
  • Omega 3’s
  • Vitamin D
  • NAC
  • Milk Thistle
  • Zinc
  • A multi-vitamin
  • Selenium
  • L-Lysine
Results:

Well, I started the immune supplements only a month ago, so not much to report. Supplements take longer to react in your body, but I have noticed that I’m not dealing with as much swelling in my ankles (a weird symptom I had been noticing as of late), so I think that’s a positive sign! Will keep you posted.

Finding #2: My gut bacteria is all outta whack (duh).

No but really, the results from my stool test were very informative. Basically, I don’t have enough good bacteria, and I have some bad bacteria plus some candida.

The great thing about the test was that they tested different antimicrobials against the bad bacteria strains to see which ones would be the most effective in killing them. Not all antimicrobials kill all bad bacteria, so this was awesome the test went the extra mile so we are just shooting blindly! Made tat $500 just a little more worth it… just a little though.

THE GOOD NEWS: NO PARASITES!! AMAZING! That’s one thing I DON’T have. Praise.

So where are we at with the gut then?

Solution:

Again, this will be slow, and frustrating, but at least we have somewhat of a better pathway to go down with the new information. In addition to the immune support protocol, I’ll be starting a gut protocol with the following supplements:

  • L-Glutamine
  • OrthoBiotic (crazy strong probiotic)
  • GI Detox
  • Grapefruit Seed Extract
  • Butyrate
  • Biocidin
Results:

I’m waiting for my shipment to come, but I will keep you posted on how I am feeling. With the SIBO, i was a little concerned with taking a probiotic, so the plan is to start the antimicrobials (grapefruit seed extract and biocidin) and get to full strength before introducing the probiotic.

However, I do know that I can expect die-off symptoms, which will not be enjoyable. Basically, everything will get worse before it gets better. JOY.

With all this said:

I’ll be retiring the #slayingSIBO posts for now, since my health is encompassing more than just that. I’ll have to think of another catchy phrase for my journey – suggestions welcome in the comments!

IMPORTANT NOTE:

I did not include the brands or dosages of my supplements because everyone is different. If you are going through health issues similar to mine, I am happy to chat with you and provide my experiences, but please never take my protocol as something you can directly follow! Chat with your doctor 🙂

That’s all for now, folks!!

xx

happily Haleigh

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I may just be the sickest healthy person you know…

“You eat so well!”

“You crush it in the gym!”

“You’re young and look so healthy though!”

All comments that have been said to me — and yet, here I am, about to turn 27 and feeling like an 80 year old whose life has been ripped away from her far too soon with every new medical discovery and diagnosis I receive.

Yesterday, I had my second appointment with Dr. Nicole. If you’ve been keeping up, you’ll remember her to be my new functional doctor. Since my first visit with her, I’ve finished my round of Xifaxan prescribed by my no-longer gastro for the SIBO (and no, I’m not feeling magically better as I had wished) and have also completed more bloodwork – something pretty routine to me by this point.

At my appointment yesterday, we went over the new bloodwork Dr. Nicole had requested, and boy, it was quite the overwhelming experience. I’ll be honest, my happy-go-lucky, can-do attitude broke a little yesterday.

Dr. Nicole, is great – let’s not get that confused. She sat with me and talked through all the findings, and summarized everything into her plan of action very clearly. She answered all my questions, and is just a great human overall. But the information she shared was less than appealing, and although knowledge is power, yesterday, knowledge just felt like a ton of bricks.

Picture this: A movie moment — cue the dramatic and triumphant music (you know the one), a track-star about to win the race, smiling ear to ear, he makes his way toward the finish line in slow motion. The end is in sight, the gold so close he can taste it, and out of nowhere, he starts to trip and his smile fades slowly. Zoom into his ankles turning this way and that way, his knees knocking, now back up to his face that has now gone from a look of victory to full-on defeat before cutting back to real time with the winner-to-be face-planted on the track with a furry of feet trampling him to take his place for first, second and third as he just lays there, defeated.

That is how I felt after my appointment yesterday. When I had the SIBO diagnosis, I felt like I was on my way to victory – FINALLY! Something to blame all my problems on, and medication to potentially fix it! However, the antibiotics haven’t left me feeling any better (deep-down I knew that 2 weeks wouldn’t truly make a difference). But today, I found out that in addition to the SIBO, I have candida, and have also been living with 3 chronic viruses in my system. THREE.

Epstein Barr Virus (two strands of it, actually), some other mono-causing virus, and herpes (no, not that kind). And before you ask, NO I AM NOT CONTAGIOUS.

Am I totally shocked? I mean, not really. Yes in the sense that these viruses are still in my system, but I had mono in college my sophomore year (2012), and since then, have struggled a lot with my health.

In addition to the viruses, I also found a few different things were off with my autoimmune response, candida, some vitamin levels, thyroid levels, etc.

Basically, I’m the sickest healthy person you know. What I mean by that is I do everything right. I do my best to eat well, I exercise regularly, and just generally take good care of myself, and it’s not enough. And isn’t that frustrating? It is. I really can’t even put into words at the moment just how draining it feels.

Dr. Nicole has a protocol for me which I’ll chat about in a different post, but for now all I’ll say is this: it’s a lot of supplements that of course insurance won’t cover, so of course I’m starting to stress about money. But stress isn’t good. How do I not stress? NOW I’M STRESSED ABOUT STRESSING. (Do you see how for a type A personality, this can be a black hole?)

Anyway, the short of it is this: start the supplement protocol, complete the stool test (which cost me $500 – yikes), follow a candida diet, and follow-up in 5 weeks when the aforementioned test results are in.

I know this post was a little more negatively toned than what I typically convey, but I’m having a moment. I feel like I am wasting the prime years of my life just trying to heal myself. At 27, I should be going out and enjoying life and spending my money on fun experiences and meeting new people — not worrying about spending my money on supplements and how much sugar and carbs I’m eating and if I’m doing everything to lower my viral load and kill yeast and bacteria… UGH. Somedays I just feel like an old shell, and it’s hard, because that is NOT me. I used to be, and want to be, a very full person. But it’s hard some days, and that’s just the truth of it.

With my birthday approaching in 2 weeks (May 11th if ya wanna set a calendar reminder!), I feel so conflicted. I know I’ll want to celebrate, but I’ll feel guilty knowing it won’t be good for my body – but am I supposed to just not celebrate? WHERE IS THE FUN IN THAT?!

Life isn’t fair, but I’m trying to remember that there is a lesson in all that we experience. What is meant for you will find you when it’s right for you.

Look out for my next post on my protocol and a few more deep-dive details (if you’re following me for specific health interests!), but until next time…

xx

happily Haleigh

#slayingSIBO // general update

SO.

Here I am, 3 days after finishing my two-week round of Xifaxan, and I feel… the same.

In fact, I might feel worse? Because along with not finding relief, that ROUGH round of antibiotics left me with some fun side effects: breakouts, weird rashes, swelling in my limbs, worsened joint pain… super fun times, my friends!

Thankfully, I have another appointment with Dr. Nicole on Monday. The plan is to chat about anything she found in my bloodwork, and discuss about next steps (remember that super fun test I talked about previously? Yeah, that’s probably gonna go down LOL).

In the meantime, I have also secured an MRI for my chronic lower back pain and emailed a doctor about my toe pain (I was set to actually have a toe surgery in January, but getting a new job threw a wrench in that!). Not only is my original, right toe still hurting, but now my left one has started bothering me. OOF.

Today in Chicago, it is snowing. Yes, in April. And honestly, while I’m not THRILLED about it, it’s given me the perfect excuse to take this Saturday and truly do nothing. As I’m typing this, I’m laying in bed in the middle of the afternoon with no plans for the rest of the evening, and it’s glorious. I did start my day off nicely though – woke up for a workout where I met a new friend, grabbed a coffee, went to my first therapy session, and wandered Whole Foods just because (does anyone else do this?! Didn’t even buy anything – I just love it!)

Tomorrow, I’ll be attending a restorative yoga session – yoga, something that doctors have told me time and time again to partake in for stress management, and something I usually blow off. However, in the spirit of working on my mental health, I’m going to try. Again.

So anyway, this post was really not substantial because truly, there has not been much change. More to come, and I’ll keep you all posted, but until then, I hope your life is beautiful and your days are wonderful.

xx

happily Haleigh

#slayingSIBO Update

..there are a few things I just HAVE to update you on. Some good things, and some “you’re never going to believe this” things.

Since my doctor appointment upset last week, I’ve been pretty quiet. Partly because I was feeling very lost again, very frustrated and overwhelmed, and partly because life has been HEEECTIC this past week!

But there are a few things I just HAVE to update you on. Some good things, and some “you’re never going to believe this” things.

Let’s start with the Good Things:

A New Doc:

Of course, after being severely disappointed in the gastro and her bandaid approach, I sought out a new functional doctor (you’ll remember, I had seen one before in 2017, but he’s out in the suburbs and it’s super inconvenient to drive out there).

My criteria is that a functional doctor needs to take insurance though, which adds a layer of complexity because that option is few and far between.

BUT, I found one that seemed promising, and I somehow snuck in an appointment with her on Tuesday this past week.

I was honestly stressed to go to the appointment. In my mind, she was just ANOTHER DOCTOR who I needed to spill my guts to, praying that she’d be my last stop on the road – that process is honestly emotionally exhausting.

But I am happy to report that while I’ve only had my first consultation with her, I feel SO optimistic about her! She sat with me for over an hour, just listening to me, asking me probing questions about my medical and life history, and I honestly just felt so cared for. I am so hopeful that she will be my ride-or-die through all this, and that maybe she’ll be the one to help me find relief and true health again.

She asked to see all previous test results and blood work, so I’ve spent the past week compiling and sending all of that to her.

Next step is getting more bloodwork on Monday (anything she wants to see updated or tests she thinks are missing), and then she reeaaallly feels like what I need to do is a….drumroll for TMI approaching…. stool test. Yep. A poop test. Apparently you can test for all sorts of bacteria, pathogens, parasites, etc that way. The only kicker is that the one she orders isn’t typically covered by insurance… and it’s quite pricey. I’m in the process of checking with my insurance myself to see if they’d possibly cover it, so fingers crossed!

For any Chicago friends, her name is Dr. Nicole Maholy out of Aligned Modern Health – Streeterville.

Mindset:

This week, I took a little break from scouring the internet for SIBO information. I could feel myself getting a little wrapped up in it all, so I’m just chilling. I’m on the antibiotics, so I’m just letting them do their thing (more on that later), and I’m trusting that Dr. Nicole will be reviewing my previous labs to decipher a killer plan of action for when I see her next (April 29th).

Saying that, taking a step back allowed me to use my brain power for other things – a few podcasts that I enjoy that I had putting on the back burner, for instance. Podcasts are amazing – you have access to knowledge and new ideas for FREE. #blessed.

Anyway, because I was able to recommit some mind space this week, I’ve felt a little better mentally. I was going to include more on that in this post, but I actually began to ramble and think it deserves its own thought space, so you can read more about a mental mind-shift I’ve had this week HERE 🙂

Now for the “You’re Not Gonna Believe This”:

Really. You won’t. My gastro gave me the wrong dosage on my prescription. And I was the one to notice and point it out!

While I was gathering all my results to send to Dr. Nicole on Wednesday, I was reviewing my SIBO results and outcome. I took a look at the prescription information, and was like “Well…. that’s awkward because that’s NOT what I picked up from CVS on Saturday…”

So, of course, I had been taking the WRONG dosage of Xifaxan for 5 days… GOODNESS GRACIOUS. I immediately contacted the doctor to fill them in and was hit with a “Oh, thank you for bringing this to our attention. Please stop your current prescription and start the new one we ordered for you. Sorry for the inconvenience.”

INCONVENIENCE? How about malpractice?! I literally could not believe it. I also got into a slight argument with them because I was worried I’d have to pay for the new prescription, and I was getting a “shrugged shoulders” response from them. Luckily for me [and the doctor], the pharmacy didn’t charge me.

It was just the icing on the cake with this doctor. Never. Again. Will. I. See. Her.

Anywhooo, now that I’ve been on the CORRECT dosage of Xifaxan for 3 days, let me tell ya, this medication is NO JOKE. The first two days were a little rough – abdominal pain and bloating, nausea, headaches, dizziness, swelling in my legs and arms… fun stuff.

Yesterday I woke up SLIIIIGHTLY less bloated, and for me that was promising. By end of the day though, it was same old same old. UGH. I’m still trying to stay positive. I’ll be on this medication for 2 weeks total, so it’s a bit of a long ride. I’m hoping to see improvement at least by week one…

General Updates:

Anywho, that’s about it on the SIBO front for right now. I’m riding out this medicine, and waiting to really get started with my new doctor. I picked up a few supplements yesterday to help with digestion and just general detoxification. I’ve been holding out on bringing too many supplements back in because I truly don’t know what I’m dealing with. It’s so easy to get supplement crazy by just reading things on the internet, but honestly, throwing a million things in your body probably isn’t all that helpful, even if everything is “healthy”. Not to mention it DRAINS your bank account!! (Been there!)

But yesterday I picked up the following:

  • Liver Detox tincture – In some of my recent tests, I actually noticed my liver levels were high. None of the doctors seemed concerned, but it makes sense that since my body is stressed, my liver can’t keep up. So, trying to give it a little extra love and support.
  • Natural Vitality Calm – Okay honestly, I finally caved and bought this. I have no idea if it’s actually worth the hype, but a lot of people swear by it, and I’m supposed be managing my stress, so here we are!
  • Aloe Vera Juice Inner Fillet (Preservative Free) – I had tried Aloe Vera Juice before for digestive benefits, and honestly couldn’t remember if it had helped or not, so here we are again lol. I’ll keep you all posted!
  • Not a supplement but… CELERY. Yup. As of this morning, I’m back on the celery juice game. Honestly, I started this WAYYY before the craze happened, and saw some benefits, but had a hard time keeping up with it. But, in my current state, I may just need to suck it up and be more diligent about it! Today is day 1, so maybe I’ll check in a few weeks down the road and report any benefits!

There are still some supplements I’m curious about in terms of how they could help me and my SIBO case. I’ll have to continue to do more research and ask Dr. Nicole her thoughts… but here’s what I’m looking into:

  • CBD (let me know if you have any great brand suggestions!)
  • Antimicrobials
  • Adaptogens – I’m curious how someone with adrenal fatigue can leverage these
  • Pro-kinetics

More on supplements later…

Well, I just scrolled to the top of this post and realized how long it is so I’m just going to cut it off here because truly, if you’re still reading, I’m amazed. Go get yourself a cookie. Speaking of cookies, I’ll be baking these today for the first time as part of an attempt to cook or bake one new thing a week. I’ll do a little review later this week!

Happy Sunday, folks!

xx

happily Haleigh

On to the next… #slayingSIBO

As hopeful as I was, I should have known the appointment would be frustrating, leading me to the search of yet another doctor.

Well, it’s Friday, and thus, I had my follow-up appointment with my GI doctor about my SIBO results.

As hopeful as I was, I should have known the appointment would be frustrating, leading me to the search of yet another doctor.

So here’s The Skinny:

I walk into my appointment, expecting to see my doctor. Instead some tall, slightly dopey looking man walks in and introduces himself as a resident, and then proceeds to ask me about how I’ve been feeling. I’ve never interacted with this man, so I have to go through my entire medical history… AGAIN.

Talk about frustrating. While speaking with him, I shared that at one point since my last appointment, I had stopped taking Miralax for one day, and due to that, was dealing with constipation again. In fact I was dealing with it when I took the breath test. Looking back, I should have just left this tidbit out.

Anyway, I asked all my questions I came prepared with:

  • Antibiotics:
    • Q: Is it best to dose Xifaxin with Neomycin since I read it was most effective for Methane dominance?
    • A: I haven’t heard of that, but I’ll ask the doctor.
  • Diet:
    • Q: Should I start a lowfodmap diet while taking antibiotics or after?
    • A: No definitive answer.
  • Prokinetics:
    • Q: I read that these may be useful in cases of constipation – should we consider this?
    • A: Mmm, probably not, we can talk about that later.

He asked me a series of questions regarding my stress levels, diet, etc. then went to talk to the doctor.

My doctor comes in and tells me that they no longer know if I have SIBO. WHAT.

She says that since I was dealing with constipation during my breath test, it could have been a false positive. She then said she’d like to just continue treating my constipation with Miralax, saying it’s fine because they give it to pregnant women all the time.

I straight up looked at her and asked “So, you’re not prescribing me the antibiotic?” She looked a little flustered and asked “Well, the thing to note is if you feel bloated even when you’re not constipated…” and to that I said….

YES. Look, I have been dealing with this for 2 years. I’m uncomfortable when I wake up, and worse when I go to bed. No matter what I eat, what I do.

She answers “Okay, then we’ll give it to you!” *insert eyeroll*

I then asked: “What does follow up look like? Do we need to retest to ensure it’s gone”

Response: “No, no protocol – we just treat the symptoms.”

I had so many problems with this appointment:

  1. The fact that they sent a resident in first really bothered me.
  2. The fact that the doctor was so changeable really bothered me.
  3. The fact that they were fine with saying I should just take Miralax the rest of my life really bothered me. This means my body isn’t working right!!
  4. She told me I was not a person at risk for SIBO, when honestly she never took into account all of my other health issues that most DEFINITELY have put me at risk for this.

This was such a typical Western Medicine approach. I was hoping for so much more because the doctor seemed so proactive in getting me the test in the first place, but the follow-through is lacking.

I was very emotional this morning, but I’m trying to take the positive out of it and no that this experience served its purpose, and now it’s just time to move on. I got the antibiotic out of it, and I’ll start there, but now it’s time to find a functional doctor in Chicago (who accepts insurance) who can help me with the rest of the process.

Another bump in the road, but what’s new!

Stay positive people!

xo

happily Haleigh

The Waiting Game… #slayingSIBO

Have you ever been told you’re a ruminator?

Well, I have been one all. my. life. I was born a type-A, worry wart of a child — truly, I tell you it’s a miracle I’ve made it to age 26 without becoming a total basket case. The self-induced stress I have put my body through has probably primed me for SIBO!

Have you ever been told you’re a ruminator?

(I’ll give you time to google “ruminate”)

Well, I have been one all. my. life. I was born a type-A, worry wart of a child — truly, I tell you it’s a miracle I’ve made it to age 26 without becoming a total basket case. The self-induced stress I have put my body through has probably primed me for SIBO!

At 26, almost 27, I will say that I have made VAST improvements in my almost obsessive ruminating behaviors. I mean, I no longer spend hours on hours on WebMD… just short half hour periods here and there (hey, old habits die hard, ya know?)

But I swear I’m not a hypochondriac – I am just innately in tune with my body, and I know when something’s not right. And finally, my persistence and “worry” has brought me some bonafide truth and answers.

Unfortunately, the time between when I received my test results and my follow-up with my doctor on Friday is a week. ONE WHOLE WEEK. Do you know how much time that is for me to think about this, worry about this, and GOOGLE THIS?

A lot. But the waiting game is to my favor, really, because I have been deep-diving into the world of SIBO and how I am about to kick this thing’s butt. Receiving this diagnosis can be overwhelming. The scarcity yet vastness of information on SIBO can be truly mind-boggling.

Because of this, I wanted to share a comprehensive short list of resources I’ve found in my research that I have found extremely helpful thus far incase anyone else feels lost in the midst of a SIBO diagnosis! I am by no means an expert (yet), but I’ve already learned a lot. I still want to do more research on more areas, and as I learn, I’ll post on the blog.

You can find that list HERE 🙂

While I wait for Friday to come (two more days!!), I have already started to make some changes in my life to start truly healing and get my life back. It’s amazing how news like this can really spur you to assess your life.

  1. I’ve spent a lot of time reflecting this week – – thinking about what and who causes me stress, and better yet, what and who brings me joy.
  2. I’ve been extremely self-aware. I’ve taken care to notice every feeling and thought that I’ve experienced this week to help me notice things like stressors and dark places in my mind (so I can work on fixing them!)
  3. I made an appointment with a therapist – not for anything specific, but from what I’ve been reading, stress management will be VITAL in helping cure SIBO, and honestly, I’ve never really been that great at stress management… I like to think I’m a rockstar at suppressing it though 🙂
  4. DANCE PARTIES: Yes, I’ve started having a dance party to music I used to love in my teenage years (think Hannah Montana and Jonas Brothers) every morning before I leave for work, and honestly it just MAKES. YOU. HAPPY. Try it.
  5. Gratitude. Through all of this, I’m trying to be grateful. I’m trying to be grateful for the fact that it could always be something worse, and I’m trying to be grateful for the fact that maybe this will lead me to a better quality of life in the long-run.

I know we all love a weekend, but especially this week, Friday can’t come soon enough!

I’ll be sure to update the blog after my appointment.

Until then,

xo

happily Haleigh

My SIBO Resource Shortlist: #slayingSIBO

Here you will find a running list of resources I find extremely helpful in understanding and slaying SIBO! I’ll keep this updated as I stumble upon anything new!

Doctors You Should Know:

  • Dr. Will Cole
  • Allison Siebecker

Websites and Blogs:

www.siboinfo.com

www.feedmephoebe.com/

www.chriskresser.com

www.bellalindemann.com

Podcasts:

Instagram:

The following are a few accounts of people who either post about SIBO in depth, or who are experiencing it first hand!

  • @phoebelapine
  • @katie_roeser
  • @lilsipper
  • @kirstenswalesnaturopath
  • @shylahmay
  • @gratitude_project
  • @graves_disease_sibo_warrior
  • @jordynliftlove
  • @vince_pitstick

Hashtags:

  • #SIBO
  • #SIBOdiet
  • #slayingSIBO 😉
  • #lowfodmap

Reddit:

https://www.reddit.com/r/SIBO/

Facebook Groups:

Pinterest:

Informational Documents:

http://www.nutritionaltherapyconference.com/wp-content/uploads/2017/03/SIBO-Overview-Allison-Siebecker.pdf?fbclid=IwAR1s5TnR4B7uKAfaFa5B1PCRR5lpUFH9jkF7uAXESdtsRrirP5l3xHLI4A8