Treatment Preparation

To start off- I’m not a doctor, nor do I pretend to be one on TV. I’m sharing my results and what treatments were recommended to me by my doctor in the hopes it’s useful to hear about someone else’s experience.  None of this information is intended to diagnose or treat anyone.

 Also, my brain fog is pretty intense at times. I try to make sure what I write is correct, but I may get things wrong from time to time.

I talked about my treatment plan at the end of my 3rd functional doctor visit: Results and a treatment plan for GI issues post.

To recap quickly, it’s a 10 week plan with 4 different phases, and each phase is targeting a part of my diagnosis.

When I look at the plan objectively, it does not seem difficult. I have to take a bunch of pills at different times of day. During certain phases I have to eat certain foods and other weeks I’m to follow a paleo-ish diet.

Practically, however, this is overwhelming to me.

Why?

First, my brain doesn’t work like it used to, because one of my symptoms is brain fog. The best analogy I can come up with is this: my brain used to work like a new computer- it was fast and could handle lots of windows and programs open at once. Currently, my brain works like my 8 year old desktop- it’s got lots of programs and junk on it so it’s bogged down and slow. If too many things are open or happening at once, I cease being able to take input and I will have to go lay down. If I focus on one thing at a time, I seem to do ok. If there are 2 or more things happening at once, I don’t process well.

Second, I have fatigue that is unpredictable. I have a certain level of fatigue all the time. The all-the-time fatigue limits me to 1 big thing a day (going out for lunch, going to the gym, going to church), or 2-3 small things a day (appointment, chores, making meals, picking up the kid from school, etc.).  Some days it’s much worse, and I can get up and have breakfast, nap for a few hours, get up and sit upright for a few hours, sort of eat something for dinner, sit around some more, then go to bed. Those days, I have no motivation, and nothing gets done. Before the big energy crash in June, I knew what things would make me tired for a few days. At this point, I don’t always know what triggers the higher fatigue days.

So, on a practical level the brain fog makes it hard to complete sequential steps because any other thing that comes up becomes a tangent. Example: I’m awake! I’ll go downstairs and eat breakfast and take my pills. Oh, the dog wants out. Oh look, there’s tomatoes that are ready to be picked. Maybe I’ll go out to the garden and see what else needs to be picked. Wow, there’s a lot of weeds in the yard…it’s nice and cool out now, maybe I’ll just pick a few. Wait, wasn’t I going to have breakfast? This happens all day long with different things.

On bad fatigue day, things that I would normally do, like cooking breakfast, become really hard. Like prepping to climb a mountain hard. It seems like so much work I just don’t do it. On those days, I tend to eat poorly and don’t eat enough. I also tend to be apathetic, which isn’t great when you’re trying to relate to people.

Knowing that brain fog and fatigue are going to be my biggest hurdles during treatment, I’m trying to take them into consideration while I’m preparing to start treatment. I'm allowing myself almost a week to prepare so that I can give myself enough time to process through everything, and because I want to start treatment on a Monday.

Preparations:

1.       A new pill organizer

My treatment plan as given to me by my doctor consists of a giant list of pills with how many and what time of day to take them. This includes every thing over the entire course of treatment, so it’s a little overwhelming since I’m taking certain pills during certain weeks. I already get confused looking at it during the day, so I decided I needed a bigger pill organizer! As you can see, my old pill organizer (the blue one) only had pills for am and pm, and the new one has compartments for four times a day. I’m hopeful that just having all the pills ready to go and not having to think about them will work out for me.

2.       Checklists and trackers!

Not only is checking stuff off a list immensely satisfying, but I can make my checklists in Excel, and I LOOOVEEE me some excel spreadsheets! In fact, I decided that a nicely crafted Excel spreadsheet is one of my love languages…lol

I currently have 3 spreadsheets started:

-A 10-week pill tracker that has all the right pills at the right times of day, and has the right pills for the right phases. Being consistent with taking pills is not something I have ever been good at. I’m hoping if I can check off each pill as it’s taken, that I will remember to take them.

-A general daily schedule to help keep me on track. As I mentioned, I tend to get off task really easy. I’m hoping to use the general schedule to help me fill in my day planner appropriately.  I’m hoping if I have a plan already written out it will help me stay on track.

3     Not planning/starting many new things; rescheduling things that are close to a meal

I have found it’s hard for me to have events scheduled close to meal times, especially breakfast. Since I never know how sleep will go, I may or may not wake up with enough time to make breakfast AND take all my pills. Anything over the next 10 weeks that is scheduled before about 1pm will need to be rescheduled for the afternoon. For 10 weeks, my whole life will revolve around eating and taking pills.
I had a handful of things that I’ve scheduled for the next 10 weeks. I’m going to try and do them if I can. However, I’m not going to try and plan or start a bunch of new things. For example, a friend told me about a weekly community Bible study on Thursdays from 9:15 to 11:15am. I really wanted to do it, but with it starting early and being close to both breakfast and lunch, I realized it just wasn’t something that was going to work in this season. I realize being social is still important during a time like this, so I will still make plans to see friends on occasion, but only at times that work for me. I’ll probably rely on phone calls more to keep in touch with people because it’s easier to do spontaneously.

4    Symptom correlation

I did this today! About a month ago, I downloaded a symptom tracker called ‘my symptoms'. 

It tracks dang near everything- meals, drinks, sleep, exercise, bowel movements, supplements, more I can’t remember, and there’s even an ‘other’ category where you can add random stuff that doesn’t really fit into another category. Since my only noticeable GI symptom of SIBO is constipation, I went through a csv file I was able to export from the app and see what foods may have caused constipation. For me, I have a lag time of about 2 days between the food and symptom, so it took me a while to go through and try and figure out which foods were the problem. Onions are a really obvious trigger food. It seems that squash may also be a trigger, but not as bad as onions. I wanted to identify trigger foods so I knew what they were. 

5     Find recipes

I need to confirm this with my doctor, but I think I eat a paleo-ish diet during phases 1 and 4, and eat a bunch of high FODMAP foods during phases 2 and 3. *Update- I called my doctor to clarify what I should and shouldn't be eating during different phases, and they told me to NOT eat a bunch of high FODMAP foods that trigger symptoms because it can make you feel bad. Good thing, I called....I was remembering my research and not what they told me*
I’d like to find several good recipes for both phases, and have them printed out and ready to look at. I also need to either find recipes that make leftovers, or start doubling recipes…. it’s really nice not to have to cook every night, and this may help to cut down on the number of freezer meals I need to prepare. I’m hoping to do this tonight and tomorrow.

6    Food prep

I know there are going to be bad fatigue days where I won’t want to cook during the process. I’m hoping if I can make and freeze a few meals that I’ll at least be able to eat well on those days. Because of the amount and type of pills I’m taking, I need to take them with a decent meal. A few weeks ago, I ate a small meal and took all my supplements with it and felt really nauseous….it was not fun. I don’t think I’ll be able to prep food for the whole treatment period, but I’m thinking if I could make a few meals for the next 2 weeks it will be a start. I’m mentally preparing myself to do meal prep about once every week or two throughout the process. I’m hoping to do the initial meal prep over the weekend.

There was one last loose end that got tied up today that I was super excited about. One of the antibiotics that was prescribed was Xifaxin (Rifaximin), which is notoriously expensive. My doctor had faxed the prescription into a pharmacy, and we were waiting to see how much my insurance would cover. When I called the pharmacy this morning they told me that after insurance I was looking at about $1300 for the pills I needed. But then they told me they applied some sort of other co pay discount, and it brought the price down to about $200. I was dumbfounded! When the rep asked if I could do the lower amount it took me a few seconds before I was able to say yes! I was so overwhelmed with gratitude with the lower price that when I got off the phone I just spent a few minutes praising God.

The doctor was waiting on finalizing the treatment plan until we found out the price of the Xifaxin, so it felt like a relief to get it paid for and figured out.

So that’s what I’m doing to prepare. Hopefully, all these preparations are worth it!

3rd functional doctor visit: Results and a treatment plan for GI issues

To start off- I’m not a doctor, nor do I pretend to be one on TV. I’m sharing my results and what treatments were recommended to me by my doctor in the hopes it’s useful for others to hear about someone else’s experience.  None of this information is intended to diagnose or treat anyone.

 Also, my brain fog is pretty intense at times. I try to make sure what I write is correct, but I may get things wrong from time to time.

On August 28^th, 2018 I had my 3^rd appointment with the functional medicine doctor. We reviewed the data for the SIBO breath test, the stool panel, and the urine analysis.

My 1st appointment was a 2 hour long session to cover my health history and order tests.

My 2nd appointment was to go over bloodwork results, hormone results, betaine HCL trial results, and talk about a treatment plan given the findings from those tests.

At the end of the 2^nd appointment, the doctor noticed that the SIBO lab had come in early so she looked at it quickly. She told me I had methane dominant SIBO, but didn’t go into much detail.

I spent much of my time between the 2^nd and 3^rd appointment looking up as much information as I could about SIBO and related issues. Based on what I had read, I went to the 3^rd appointment prepared for a complex treatment plan.

What is SIBO, you may ask? I'll summarize it a little here, but this article gives a pretty good overview.

SIBO stands for small intestinal bacterial overgrowth. While there is bacteria present all along your digestive system, your small intestine is not supposed to have much compared to the large intestine and colon. As far as I understand, the bacteria that overgrows in your small intestine is not necessarily bad bacteria, it's just that it's growing in the wrong place. SIBO can cause lots of digestive issues and icky GI symptoms. Before the test, I did not think I had SIBO because I really only ever experience one normal SIBO symptom- constipation. However, I also found that SIBO can cause fatigue and brain fog, both of which I have experienced for about 2.5 years.

We started out reviewing the SIBO test results, which was pretty quick since I already knew I had methane dominant SIBO.

My treatment course for SIBO looks a little different than others I had seen online, but I’ll talk more about it at the end of this post. The reason for this is because my SIBO treatment takes into account other issues that came up in the tests. Just like every person is different, each SIBO treatment for an individual may vary depending on what other issues they have. 

The doctor then walked me through the results of the GI effects stool profile. I did look up the interpretation guide for this test a few weeks prior to the 3^rd appointment, but I didn’t spend as much time looking at it, because there are lots of potential results.

The results indicated I have a parasite, I don’t digest fats well, I have a yeast overgrowth, and the bacteria in my gut are not well balanced.

The parasite results are pretty easy to understand- they’re either found in your stool or they’re not. It turns out I have blastocystis hominis.

When I asked my doctor how one obtains blastocystis, she said it was fecal to oral transmission typically from contaminated food or water. Gross! I learned from the CDC website  just now that people who have blastocystis may or may not have any symptoms. Given everything else we found, I don’t know what, if any role, it might play in my health issues. My treatment for this parasite is an antibiotic called metronidazole.

The stool samples had quite a bit of fat in them, meaning I don’t break down fats well. The test splits fats into triglycerides, long-chain fatty acids, cholesterol, and phospholipids. My values for phospholipids and long-chain fatty acids were over the reference range, the triglyceride value was on the high end, and cholesterol was normal. The total fat count was over the reference range. I was prescribed a digestive enzyme that should help with the fat break down until my gut health improves.

The yeast result was not a surprise to me in general, but the way it showed up in the lab was surprising. I have had issues with yeast in the past, and I know if I eat lots of sugar I will end up with a yeast infection. In the stool results, yeast showed up on the low end of the range, but apparently, if it shows up at all it indicates the number would have been higher before it reached the lab. The yeast will be treated with a round of Nystatin.

The gut bacteria imbalance results were the ones I found most interesting.

 I had previously thought that lots of good bacteria in your gut are good. However, having too much good bacteria in your gut can be bad, because they can out compete the other good bacteria. For example, I have some lactobacillus, but it’s on the low end. I have lots of other bacteria that are quite high and aren’t allowing some of the other types of good bacteria to thrive.

In conjunction with the bacterial levels being imbalanced, my results indicate I have low short chain fatty acids (SCFA). SCFA’s are produced by good gut bacteria as part of their fermentation processes and help the gut to be healthy. Until we can get the gut levels rebalanced, I’ll be taking a supplement called probutyrate to help with the low levels.

After all of the GI effects results, we went over a small portion of the urine analysis results. I had completely forgotten I had given urine samples, so I was surprised when we went over those too! I think I forgot about them because they were the easiest sample to give.

We really only looked at the bacterial dysbiosis markers. Since this was towards the end of my appointment, my memory on what the doctor said about them is fuzzy. I think she was just pointing out that the gut dysbiosis markers were wonky in the urine analysis, which confirmed the results of the stool samples. I was told the urine results would be gone over in more detail at the 4^th appointment.

Let's loop back to SIBO for a moment so I can tell you how my doctor arrived at my treatment plan. There are both manmade and plant-based antibiotics that can be used to treat SIBO. The manmade antibiotics have had more studies done, and the results are pretty well established. While the plant-based antibiotics aren’t studied as well, those prescribing them have seen that they can work just as well as the manmade antibiotics.

In my research, most others treating methane dominant SIBO use a combination of Rifaximin and Neomycin that are taken at the same time.

Because of the blastocystis, I need to take a course of Metronidazole to kill it off. Apparently, Neomycin and Metronidazole can both be used in SIBO treatment. Since I already needed one manmade antibiotic, it made sense to go ahead with the Rifaximin assuming my insurance covered some of it. Rifaximin is quite expensive and tends to only be covered in certain instances, so we’re waiting to see what amount insurance might cover.

Apparently, we can replace the Rifaximin with herbals if necessary, but I got the feeling from my doctor that it’s more typical to pair like antibiotics together.

The doctor had mentioned that she had seen a different patient earlier in the day that had SIBO and other concurrent issues that needed herbals, so in that case, it made more sense to go the herbal antibiotic route for that patient. Again, depending on what other conditions a person has, the treatment can be quite different.

I had read in several others blogs that people took either Allicin or a type of guar gum to help activate the SIBO bacteria so they could be more easily killed off during the treatment phase. When I asked about this, the doctor said to focus more on food sources that cause symptoms for me rather than on another supplement. I found her to be very conscientious about level of functionality during treatment and number of pills taken at a given time.

Speaking of functionality, most other treatments I had read about combined the Rifaximin and Neomycin at the same time. With my treatment plan, I’ll be taking a course of the Nystatin to kill off the yeast, a course of Rifaximin for the SIBO, then a course of Metronidazole (Neomycin alternative) that will help with the SIBO and the parasite. The courses are taken one after the other instead of at the same time to help with functionality during the treatment.

After all of that, I’ll have a four-week course of Berberine and an olive leaf complex. This was at the very end of my appointment, and I honestly don’t remember the exact reason for this. 

The whole treatment period will take about 10 weeks.

During the active treatment, I will also be taking some supportive supplements:

•      A digestive aid
•        A SCFA supplement
•        A probiotic
•        An immune globulin concentrate to help with passive immunity

I will also be taking supplements to support other issues that were discussed in my 2nd appointment, which I’ll talk about in a different post.

While hearing about the treatment itself wasn’t overwhelming during the appointment, sitting down and trying to figure out how to get through it is becoming increasingly overwhelming, especially with decreased mental capacity. I’ll talk about prepping for the treatment phase in a different blog post.

CRASH!

This year on June 17th I turned 35. I also had the worst adrenal crash I've experienced to date.

Over the last year and a half, I had slowly been regaining my energy. I was doing so well that I spent a whole day at the end of May helping my best friend move, and was totally fine!

I had several plans in mind for the summer- camping, paddle boarding, and hiking were all high on my priority list.

My body had other plans.

The day I crashed was a Sunday. The Thursday prior I had picked my husband and daughter up from the airport after a late flight. We probably got home around one in the morning. Friday, Saturday, and Sunday I didn't sleep well at all and definitely didn't get enough hours of sleep.  When I woke up on Sunday morning I was exhausted. That day, our church was having its service at a local park, and I was supposed to give announcements. I knew when I woke up there would be no way that I could go that day, so I had to ask someone else to take over my emcee responsibilities.

The next several days after the crash I realized that I hadn't felt that level of exhaustion since quitting work. All of my previous crashes had been minor; I would overdo it one day, then be a little tired for 3-4 days. I would never go back to being exhausted, though.

In the previous year and a half, there were nights that I stayed up late and/or couldn't sleep, and there were plenty of nights that I didn't get enough sleep. I couldn't understand why the crash in June was so bad when I hadn't done anything drastically different.

The whole thing was disconcerting, to say the least. I started to obsess about what had happened. I tried to think of everything I had done that might have been a contributing factor, and there was nothing I could come up with.

I finally had this thought: there must be something else that's wrong.

Not knowing what else could be wrong, I tried to think about how I could figure it out. A few years prior I had got a postcard in the mail about a functional medicine doctor that sounded really good. I happened to think about them, and looked up their website. They had a package that included 4 visits and a bunch of tests up front. The more I read, the more convinced I was that I needed to go see them.

In my old job, I analyzed data sets for complex environmental sites. Over time, my team and I discovered that when you have more data and multiple people from different specialties looking at the data, you end up with a better idea of what's going on with the site.

It made sense to me that the same concept that we applied to environmental sites could also be applied to my body. With all the tests that were run up front, and with at least 2 different doctors in the same practice looking at the data, I figured I would get some answers!

 After talking to my husband about the functional medicine package benefits and costs, we decided to go for it (even though the office visits would be out of pocket).

I had one more visit with my old doctor two days before my first functional medicine appointment. It was hard to tell her that I was going to seek a second opinion and that I would undergo more testing. She seemed surprised but told me to do what I needed to. I'm glad that I had already booked the appointment with the functional medicine doctor- if I hadn't I may very well have just kept going in the same direction with the same doctor. The things she was telling me made sense, assuming I only had adrenal fatigue. I felt that perhaps I had overreacted a bit to the crash and that maybe I was going to waste a bunch of money going down a different rabbit hole.

It turns out I was correct in my thinking that there was more wrong than just the adrenal fatigue.

I just completed the third of four visits. I'll try and post about each visit individually over the next few days.