Maine and Acadia National Park (Doctor Visit/ Vacation)

Last week I was halfway across the country again to visit my doctor. At this point I have nothing I want to say about lab results or my examination, so this post won't be about that. I made some enlightening observations and have some stories to share. 

I spent 2 full 8 hour days at his clinic doing therapies, such as hyperbaric oxygen chamber, sauna, IVs, acupuncture, and more. The winning therapy for me this visit was the colonic irrigation. I knew my gut wasn't working well when I arrived. I didn't have a concept of just how stuffed it turned out to be. Before I give you too much information, I'll stop there. 2 colonics from 2 awesome nurses later I noticed major symptom relief. My acne (which was starting to make me look like a teenager) totally cleared up. My vision was less fuzzy again. My hiatial hernia feels like it's gone. The pressure in my upper back and shoulders is gone. I'm not burping or feeling mild heartburn anymore. Best of all? My mood! Despite raging PMS, I felt peace. This tranquility and calm took over, and I felt like I didn't have to force myself to be kind anymore. My last colonic was 9 days ago. Today I started my period (hellish pain), but guess what? The bloat went away. I dropped 5 pounds (overnight, seriously) and for the first time in who knows how long my stomach looks flat. I feel light and thin.

I took this after just getting up from laying in bed from last night until 2 pm in some pretty nasty endometriosis pain (and with a sedating pain killing tincture still flowing through me)... so ignore my tired face. It's not the best angle to see my stomach, and I'm not sure I have a photo so you can compare, but believe me. My stomach isn't bulging like it was during PMS and pre-colonic. I normally can't wear this tank (medium Pact racerback) because my stomach is too bloated for it, but it fits well now!



You might be wondering why I haven't been doing gut cleanses here at home. I actually was. I take DGL regularly, and use aloe vera with slippery elm as needed. I also take vitamin C and magnesium citrate. In fact, the week before I got on the plane, my local acupuncturist had me on an herb blend with a strong laxative effect (and she didn't tell me.) Let's just say it was working and I was in the bathroom often. It just doesn't do the same thing as a colonic. All that water from the other end does wonders.

My other therapies were very helpful too. I love glutathione and vitamin C IVs so much. They wake up a part of me that I forget exists. I don't know how to explain it, but I feel more complete for a while after them. 

This was one of my German footbaths. This is not that silly type of detox footbath that turns colors based on what the water pulls out from your feet (hint: the water in those turns colors even if your feet are not in it!) This is a seaweed blend and it feels amazing on my purple freezing feet. 

Normally my mom travels with me to see my doctor. This time my husband insisted on taking me so he could make a vacation out of it. As much as I love to explore, I was honestly really nervous to vacation. I was unsure that I'd have the strength and energy, and I knew I'd end up holding him back from doing as much as he wanted to. He doesn't like to stay in one place long, he likes to see as much as possible and pack the day full. I used to be the same before I got sick. Now I like the idea of finding a pretty park in a new place and relaxing there for a while.

My doctor is in Portsmouth, New Hampshire (Human Nature Natural Health.) The first evening we got to relax on the deck of our Airbnb (I'll blog about finding Airbnb's that are safe later.) We had the most beautiful sunset to watch. That last evening we went to a Jazz Club downtown - not the sort of thing I'd normally do after 2 full days of therapies that leave me very calm, peaceful, and just wanting rest to soak it in. Also not the type of place my MCS normally allows me to tolerate. I was able to relax in my chair and enjoy it with a locally grown salad full of veggies I could actually eat. It was actually a fairly safe place for me to be that evening, surprisingly!




After 2 days there, we drove up to Portland, Maine for the day. Neither of us really liked Portland all that well. Everywhere we went people were either smoking cigarettes or marijuana. The downtown stone streets smelled like smoke, which was really disappointing. It was upscale swanky shopping for things that really were not that interesting. I found a store that said "organic apparel" on its sign, so I went in. No joke, all they sold were glass blown bongs and female sex toys. (Glass sex toys? Really?) No clothing anywhere. I went into Irish Crystal store - I had to know what Irish crystals were. There were no crystals, just a ton of very dusty old merchandise that I think was supposed to have been imported.

Finding dinner in Portland was maddeningly difficult. There are two Greek places in Portsmouth where I can get lamb kabobs that I do really well with. Portland? There are a crazy number of restaurants. So many of them only serve less than 10 dishes. Most of them are so unique, like culinary art dishes, that I couldn't eat any of them. I couldn't just get a steak because they were all marinated. We settled on a restaurant on a boat and I ordered haddock with asparagus. They did listen to my dietary needs and allergies, they did make it just as I asked for. But I found myself with a mild allergic reaction (tingling lips and a swollen throat.) Probably cross contamination.

The next day we drove up the coast all the way to Surry, ME (just north of Acadia National Park.) It was a full day of driving and stopping at interesting places along the way. I was so drained, so sitting in a car all day just looking at stuff was helpful. We got out at a few interesting places. 

Rockport, ME

A big bridge with an observatory on top of one of the pillars.

We arrived at our Airbnb in Surry that evening and found dinner at place in Ellsworth that worked out well for me. A smaller town, but much more simple menus! Notice how finding food that doesn't hurt me is a theme on this trip? I was able to cook every breakfast at our "homes," thankfully. We went into a couple of Whole Foods and stocked up on easy grass-fed hamburgers and veggies so I could cook breakfast. I also brought my own stainless steel pan. I know that sounds crazy, but I couldn't risk getting stuck with Teflon pans.

Surry, ME Airbnb - this place was great! Highly recommend for sensitive people like myself!

<sub><sup>We spent the last two days in Acadia National Park. Now this is where the trip gets interesting for me in terms of health. Obviously I wasn't going to do as well in cities with lots of people, pollution, and poor food options. I seem to get along with National Parks very very well!

The first day was an overcast costal misty kind of day, where it wasn't actually raining, but the mist got everything wet. I love those kind of days. We spent the first part of the day in Bar Harbor, which was everything I was hoping Portland was going to be and wasn't. The air was fresh, the streets were filled with truly interesting shops that were not filled with fragrance, it had fantastic organic and local food options, and such a pretty view. My husband doesn't like shopping, but he was enjoying the stores and we had fun. There was a hemp textile store (my favorite), a fair trade shop, a bookstore with a huge discount section of awesome books (I can't flip thorough many of them due to the ink, but my husband scored big time), an old fashioned clock making factory shop, gem and mineral stores, and more. I loved that I was able to go into many of these places with little issue. That's so rare for me. There were a few stores that I walked in and walked right out due to incense or fragrance, but overall most of the shops seemed to understand that people don't want to smell anything.

In the afternoon we drove the main loop in Acadia National Park. I loved the overcast mood over the park from the mist. It brought out all sorts of tones and colors in the trees and ocean that were not there when the sun was out that evening and the next day. We had the park mostly to ourselves. It was a Friday before Memorial Day weekend, so it wasn't busy at all. Perfection.</sup></sub> 

My hubby and I after arriving in the park

On top of Cadillac Mountain. I took this while in the middle of a cloud that was blowing across the peak. It was cold, but stunningly beautiful. 

After the cloud blew through I snapped this photo of the view. Breathtaking! 

I climbed over some of the rocky cliffs to take lots of photos like this

Me enjoying climbing close to the edge

The sun came out, so I hiked down these rocky cliffs and fond a cozy spot to lay in the sun. My hubby snapped the photo. He knew this was how I wanted to spend vacation: laying in the sun in a beautiful place!

<sub><sup>The next day we spent the majority of the day in the park. It was a very different day. The sun was out the whole day, it was warm... and the tourists started to show up. By the later afternoon the park was full and it was hard to find places to park at the attractions. Thankfully by that point we had seen most of the park without people in the way. 
I was feeling well enough so I picked out a trail to hike. Yes, I wanted to hike! I wouldn't say I had energy, but I felt strong enough. I felt in control. I felt capable. It took us 2 hours to hike the trail, and there was no warning about the difficulty level. The trail started easy, just walking on a path. Then, a ways into it, turned into slightly advanced trails on rocks and narrow wooden bridges. Then there were some vertical areas. As in, the path was no longer horizontal. We had to rock climb down maybe 20 to 30 feet in a few places. I was so not prepared for that.

But guess what? My heart rate was fine. Stayed in the 90's and low 100's. It was a challenging trail that left me sore, but my body enjoyed it. It wasn't giving me any trouble. The same thing happened in Glacier National Park. When I walk around easy Bismarck trails here at home my HR tends to be in the 120's up to 170's. I go to a National Park and hike advanced trails and my HR is actually lower, my breathing is great, I'm not dizzy, and I feel strong. What's the difference? Well, a lot. It goes to show I'm not out of shape. I could be in much better shape, but I don't have a deconditioning problem. In these parks I get dense fresh clean air. No dryer sheets, car exhaust, cigarette smoke, smelly deodorant on other people, pesticides, mosquito fogging... it's just pure clean fresh air. There's also no cell service, so no EMFs. This makes for a profoundly different environment. 

The problem is that I didn't feel energetic, only capable. I did end up hitting a brick wall near the end of the trail. I reached my limit of what my body could handle. I felt my mood suddenly drop, then my vision started to stagger and shake a bit, then my whole body started to shake, then I couldn't prevent involuntary crying, and then I felt the need to faint. But I didn't. Because my body resists fainting. It really likes to make me suffer through all the pre-fainting feelings until I sit or lay down. My heart hurt so badly. It was banging against my rib cage. I had air hunger. Everything was swaying. I felt like I was walking on a boat, but it was land. I ate some jerky, but it didn't seem to a be a blood sugar issue. Thankfully my hubby helped me get to the car and I was able to recover while he drove. When we got to the car there was an ambulance and firetruck at the trail head... I was worried about whoever they were there for, but also thinking to myself that I was so happy to know they were there if I had needed them. 
So I had a POTS episode. But otherwise I survived a 2 hour hike on a drop-dead gorgeous coastal cliff trail!</sup></sub> 

I choose the Great Head Trail

I wanted to do the tree, but I didn't want my dirty foot on my pants, so I did an awkward incomplete version. Hahaha

I enjoyed climbing all over these cliff edges. That's a long way down!

This was the view of Sand Beach from the peak of the trail, a very rare natural beach on the Maine Coast

I found another great place for a nap on the cliff edge!

I forgot how to pose in photos, so I just did silly things

Yes, this park was therapy. My doctor's clinic was necessary therapy, but so was this park.

Even though I have chronic fatigue and it's difficult for me to do much, spending the energy I do have in places that revitalizes me is really important. I'm recovered just enough that I'm able to travel for medical reasons, and able to do simple things on vacation if I'm driven around. I can't do the driving myself anymore. It's very overstimulating and overwhelming. New places used to be invigorating to me. But as long as I don't over do it and I have the right person taking me on the trip, every once in a while a trip like this really helps. Of course I have to factor in that I had just had 2 days of therapies from my doctor! It was like taking a pill that gave me quality of life and stimulation just long enough to actually go on a vacation. I highly doubt I could manage a trip to a city like New York - I don't have the energy for that. I would collapse. But driving around and walking as I'm able to makes for a healthy vacation.

The next day we flew home, but we started the day in Bangor, ME. Any Stephen King Fans? We had a bit of time to see a few landmarks, but here are 2. The statue from IT and Stephen King's house!



I could tell you a bunch of stories, like homeless people standing at our car door and making it impossible to get out, sitting next to a Canadian ER nurse on the plane, talking to a cancer patient at my doctor's clinic... but I don't have the energy. I wanted to share these highlights instead. 

Blood Deficiency (Chinese Medicine)

In Traditional Chinese Medicine there is a concept called "blood deficiency." It doesn't necessarily mean that a person is lacking actual physical blood. If you would like to learn what it is, I suggest this article. In western medicine it often presents as anemia or chronic fatigue, but other wise healthy people can experience it.

I regularly fight blood deficiency. It causes me to fall away into the core of who I am, living there, unable to really connect with the world around me. I become distant, irritable, very guarded, and often incoherent. My thoughts and emotions feel highly intense and heightened due to living in them, but I have no energy to express them. There's no strength with which to pour that emotional experience into art, conversation, or work. So I appear outwardly cold, uncaring, dazed and confused, and perhaps even unloving. The truth is that I love hard and fierce, but if you want me to show it you'll just have to watch for the finer details in how I do spend my energy. If you give me time to be alone, let me recharge, and be very selfishly focused on my own needs then you'll see me come out of my cocoon and wanting to invest in you again. Until I'm once again drained. When people take a little from me every day, I never recharge, and you won't see me turn into that butterfly that is who I really am when I have full strength.

So you must understand that I have to pick and choose who I give my energy to very very carefully. For years I tried to maintain this blog, be active in Facebook support groups, be an attentive wife and friend, and give my best efforts to my job. It wasn't working for me. People kept taking more from me than I had to give. I now have accepted that my body has decided to control who I can give any energy to. Don't misunderstand. If I were well, I would treat every person in my life as equally important. I'm not well.

I have two versions of being trapped in this state. One version is that I can't tolerate outside stimulation. I don't want TV, music, people, or other distractions. I just want to be in silence. In this version I tend to be calm and submissive in my dreams, where I live. I can't step into reality, my dreams are always in my vision. I just let my natural desires and instincts play out in these dreams, and normally I find I'm just giving up and giving in to anything.

The other version is the one I'm in now. I crave music that reflects my emotional state, to the point of playing the same few songs over and over and over. I want to be fed what I want to feel, not made to produce those feelings on my own. I want my food to comfort and warm me. I'll drink hot herbal tea constantly. I want to have deep basal desires met, maybe physical touch, emotional, spiritual... like I'm hurting for not having my cravings filled. I want a very deep conversation with a person online to connect my soul with someone else I fully trust (no small talk or work talk or I will scream), but not in person. It's easier to type than to speak, and I'm not burdened with the need to show facial expression or body language online. Thankfully I have made a couple of online friends who are the same wavelength as me most of the time. I don't need a selfish conversation - often I just want to ask question and listen to them, but this sort of connection is like food to me. I selfishly need it as fuel so I don't go crazy. 

Either way, you may see the trend that I just can't fully exist in reality. It wouldn't matter how good my life is, I wouldn't be able to engage with it. No matter how many times I say this, people don't know how to respond. Some people think they can just force reality on me. Others just act like I didn't ask them to leave me alone. Some try to help me - and I do not want it. Help means work, which drains and only makes me worse. It means I have to respond with gratitude, and that response can drain me. Think of me like a cocoon. I'll come out and engage with you when I'm ready. 

No matter the version I feel, my physical symptoms are often the same. Poor digestion, bloating, blurred strained vision, light sensitivity, worsened POTS, low blood pressure, painfully freezing purple toes, joint stiffness and aches, aching heart from being over worked, muscle tension and pain, swollen tongue and tight throat, feeling 100 pounds heavier than I am, pale lackluster skin with huge bags under my eyes... and this time, I've been bleeding very heavy for a week during the middle of my cycle. All that bleeding prevents me from healing and improving.

The acupuncture bed is my favorite place to be each week. Acupuncture is a fine art, the practitioner and skill level really does matter. I start with having cupping done, and the warmth it brings to my back is one of the best feelings in the world. It helps my muscle tension, but it also helps me take a deep satisfying breath. I often cough from the raw feeling of breathing air into the bottom of my lungs after cupping. Then come the needles. Sometimes my body fights the effect and my heart rate sky rockets - my qi moves quickly and can feel like anxiety flowing through me for a while until I finally deeply relax. Other times the needles kill all the anxiety in me, allowing me to fall deep into soul and stop feeling my body at all. I have the best imagination and dreams in this state. 30 minutes of deep pure relaxation and comfort that can't be replicated by any drug. I've had out-of-body experiences, and that feeling is more therapeutic than anything else in the world.

It's hard for me to write this. The person I am when I'm well and healthy would be embarrassed by this. I'm careful about how I present myself so that I can get along with everyone. I like to know who people are, and I like to show how much I care. When I'm healthy I guard any dark, anti-social, depressed feelings I have from others so I can just show them love and care. I'm a highly empathic person, but I've turned that empathy on myself and away from others. I'm studying myself like I'm another person desperately trying to connect with this person I see in me.

The best thing you can do is let me guard my energy. Don't take it personally. Taking it personally will tug at my empathetic nature and drain me. It's not about you. It's about me being hardly alive. I'm a flicker of myself. Don't put that light out. 

Surgery and Diagnoses... It's Official!

In the past few weeks I was officially diagnosed with POTS, Inappropriate Sinus Tachycardia, ovarian cysts, and Endometriosis. It only took 5 years to get medical proof that I'm suffering, but I have it.

Here's the thing: POTS, Endometriosis, and Mast Cell Activation Disorder (MCAD) tend to go hand-in-hand. I haven't tried seeing a doctor for MCAD, but I have obvious chemical sensitivities that my Naturopathic Doctor helped me figure out. It could easily be MCAD - in fact, given the fact that I have POTS and Endo too, it probably is. I'm uncertain at this point in time if there's any point in me getting my chemical sensitivities diagnosed as MCAD by an MD.

The POTS diagnosis story:

If you follow my blog then you know that last December I saw Dr. Jeffery Cohen, a neurologist in New Hampshire to have some autonomic testing done to rule POTS out. The testing equipment broke, however, and he tried to cancel the appointment on me the day before my flight out there. He was willing to see me and look at other test results, at least. I went to cardiology clinic first and had a Tilt Table Test performed and an Echocardiogram. I did not faint on the tilt table, so the nurses said the test was negative, but Dr. Cohen pointed out that my heart rate did go up over 30 bpm (the requirement for POTS). He put me on a Zio Patch heart monitor for more information. He wouldn't diagnose me without more info, and after seeing the results of the Zio Patch he said I needed to see a cardiologist. My plan was to travel again to see a cardiologist familiar with POTS. My POTS support group said they didn't like Dr. Cohen because he wouldn't diagnose them, but honestly, I really liked Dr. Cohen. He gave me the tests I needed for an accurate assessment, and he was careful and thoughtful. I'm not upset that he wouldn't diagnose me, because I have better information for the diagnosis from someone else because of what he did for me.

I ended up finding a Cardiologist here in Bismarck that is familiar with POTS. I was really surprised by him, and I'm fairly certain he's the only cardiologist locally that is familiar with POTS in adults. I did a lot of digging and asking around last year and couldn't find a doctor who was familiar, and I think this doctor might be new since my asking around. Dr. Stephen Boateng, D.O. at Sanford in Bismarck. I don't think he's an expert on dysautonomia, but he is a very good and careful doctor. I really like him. Dr. Boateng was able to look at all my testing and see the evidence of POTS. He was concerned with my high heart rates on the Zio Patch results, particularly one spike I had. He diagnosed me and had me try a beta blocker: Metoprolol ER 25 mg. In short, it both worked and made me worse at the same time, so he took me off it. I plan to explain this in another post (or this one will get too bulky.)

What is POTS? This explains:





Endometriosis story:

Before seeing him, I went to a gynecologist at Sanford to discuss all my menstrual issues. 2 months of bleeding heavy every day, abnormally long PMS, extra pain... you get the idea. This wasn't the first time I've tried gynecology. Last time, about 4 years ago, I went to a very experienced doctor that I really liked, but she retired just a couple of months ago and I wasn't able to return to her. I initially saw her because I had a MRSA abscess on my vulva - and before you freak out and wonder what I was doing to get it there I can explain. A family member had MRSA who I was taking care of. I probably didn't wash up often enough. Anyway, she helped me recover from the abscess, but did other gynecological tests while I was seeing her. She told me I needed to consider a laprascopy to look for endometriosis, but warned me about the cost. My insurance would not cover the cost, so I decided against doing it. In retrospect, I really wish I had done it then instead of waiting until now. Why? Because I was worse back then and I would really like to know just how much worse I was - I'm fairly certain my naturopathic doctor and acupuncturists have helped me recover from most of my endometriosis before I had the surgery. But the fact of the matter is that I still have endometriosis, and it's officially diagnosed now.

This new gynecologist I saw first had me get an ultrasound, and it showed a few cysts on my ovaries where I have complained about pain. She said a laparoscopy was a very reasonable next step, and so I finally decided it was time to just have it done. I think I'll write a different post about the surgery itself, because I think I can share a lot that will help those of you considering having it done. Especially those of you with chemical sensitivities. I had problems,  I went through 3-4 IVs, but I believe it was worth it. My doctor said she found a lot of scar tissue, probably evidence of past endometriosis. I had endo in a few places that she was able to burn out of me, but I had some on my ovary (the one causing me pain) and she couldn't remove all of it without damaging the ovary. She said she burned it though. I had to have 3 incisions, and now for 2 weeks I've been nursing my belly and trying to let it heal. I'll share photos in the next post where I go into detail. My post-op is in a few days, and we'll discuss treatment options. Endometriosis is a life long illness that will have to be managed.

What is Endometriosis? This video explains:
https://www.youtube.com/watch?v=yM88T1R8HD4

(Blogger doesn't let me embed all videos on youtube - so I had to link to this one.)

Between recovering from surgery and going on a beta blocker for 8 days that made me worse in some ways, it's been a difficult time for me. Very difficult. And our finances are scary bad now. But I'm glad I went through all of this. I'm glad to have official diagnoses, and I'm glad to have this on my record in case I need more medical help - especially in emergency situations. No more arguing with doctors, they can just look at my records and see I'm not a psychopathic hypochondriac. That alone is worth everything I've been through!

Norovirus is No Joke

Here's the short version:

I got Norovirus and it lasted for 5 days. It ranked in the top 3 worst pain experiences of my life. I'm too drained to recover easily. My stomach and gut are not back to normal and are very picky about what food and in what amount and when I eat it. I'm emotionally dead and deeply depressed. I finally had my appointment with my new local primary care doctor since I need an MD on my record, and she's sending me to a gynecologist and a cardiologist.

...I feel like this is just leading to a repeat of 2013 all over again. Lots of money getting thrown at doctors who likely will just tell me I'm normal and it's all in my head. I wonder why I bother, then I remember my disability case, and I remember that I'm supposed to be hounding lawyers until someone takes my case. Yeah, well, give me some magic pill to return me to good health if you want me to try harder to get a lawyer. If I want to ever get government assistance then I need MDs, not NDs, to diagnose me. But it's the ND that actually helps me.

Am I being too honest if I say I either want to be able to live without all these health problems or just die? Does that make you uncomfortable? Sorry, my filters are full and can't filter anything else. It's all I can think about. I can't enjoy the things that normally make me happy. I'm pushing my friends away because I don't have any energy at all for them. I'm just blank. I'm emotionally dead. My body feels like an empty shell. There's no energy or life in me. Norovirus took what I had left. 2 days of vomiting, diarrhea, and horrid skin aching and tenderness. 2 more days of just diarrhea and skin pain, Another day of just diarrhea. Any fuel or qi or life energy that I had left is gone. I'm not suicidal, I just don't want to take part in anything in life. Any appointment, commitment, phone call, email... it's too demanding. Wants too much of me. I can feel a pool of anger and resentment somewhere in me, and if that's the only emotion my body will give me then I really need to stay away from people.

I'm going to a gynecologist because I can't stop bleeding in heavy amounts. It's been 2 months of bleeding almost every day. I tried some herbs from my acupuncturist to stop the bleeding. One of them did reduce the bleeding without side effects. The other seemed to stop the bleeding for a few days, but gave me such low blood pressure that I spent the whole day trying to keep my head upside down to manage the headache and painful blurry vision. I know I'm very blood deficient. She gave me herbs to boil and drink to improve my blood, but I haven't yet because of Easter taking over and then getting Norovirus. But seriously, puking my stomach and flushing my guts out when I'm already blood deficient? Why does my body choose to live through these things? Why does it hold on to life? And why don't doctors see that I'm suffering so severely that I'm not able to actually live any sort of life? It's mind blowing. My ND sees it. My acupuncturist sees it. My chiropractor doesn't question it. The neurologist I saw seemed to believe me, but he's so far away and I think he did what he can do within his specialty.

Trying to eat is a major problem. My stomach and gut are so sensitive that I have to figure out exactly the right thing to feed them, and then when I do I can only manage a couple of bites before I get pain and feeling overly full. Yesterday eating a baked sweet potato with just olive oil and salt worked. Today sweet potato is cramping my stomach. Chicken broth the super soft canned chicken is working consistently, but only until my stomach can't take more liquid. It's being just as picky about water. I feel dehydrated, but water feels like a bowling ball in my stomach. Last night I wasn't able to eat for 5 hours before it was bedtime. I knew I'd get pain from hunger if I didn't eat, so I tried to eat some very soft non-greasy sausage. I managed about 3 bites before I got major pain in my stomach. My gut was so inflamed it was giving me a horrid headache. I had to just go to sleep and sleep it off. Enzymes are helping to a certain point. I know that if I could turn my digestive system back on that I might actually be able to get some energy again... I feel like I'm gaining a tiny bit back everyday, but it's not enough. I wouldn't be able to type this right now if not for the green tea I've been sipping on all morning and the tiny bit of energy I'm getting back each day.

I'm going to attempt to go to work today for 3 hours. I'm lucky that I was only scheduled for a 3 hour shift today before I knew this was going to happen. I've missed 3 or 4 shifts already, so I need to try.

Unrest Documentary by Jennifer Brea

Jennifer Brea made a documentary about her illness, but it isn't just her illness. It's an illness millions of us have. The documentary is "Unrest," and it's now streaming on PBS and Netflix. "Unrest" is about Chronic Fatigue Syndrome. 

My husband and I were able to watch it last night since Netflix now has it. PBS aired it, but not locally, so we had to wait for Netflix. If you don't have access to either streaming service, you can pay to rent it on Amazon and other streaming sites.

"Unrest" is an expansion of her powerful Ted Talk:




Many of you might prefer her Ted Talk, which has essentially the same information as in the movie, simply because the movie is much more difficult to watch. "Unrest" makes you watch people suffering with CFS/ME up close and personal. It reveals the reality of what being bedridden from fatigue is really like. It's not easy to watch, even as someone who has been bedridden from CFS/ME. I know the illness from the inside, having it myself, but watching it from the outside was still difficult for me. Her Ted Talk has the science and the facts in a more condensed format too, for those who want to learn, but don't want to commit to watching the full documentary.

As someone with Chronic Fatigue Syndrome and knows other people with it, I would like to strongly encourage you all to get everyone you know to watch "Unrest." What I hope the movie accomplishes:

1. Breaks down stereotypes about the illness. We are not lazy, we are not just tired, we are not just being selfish. With this illness, willpower doesn't work. We can't just "buck up" and push through. It doesn't work. "Tired" is normal. Chronic fatigue is not. They are not the same thing.

2. Encourages the funding of research on CFS/ME. As she explains, CFS/ ME receives the least funding of all major debilitating illnesses, and therefore very little progress is being made. As it is now, most doctors I've talked to have told me I just need to exercise more or go see a psychologist. The problem is that research that has been done shows that exercise can be detrimental to CFS patients, making their condition much worse. I know this is true from personal experience. And the illness is not a psychiatric one - that's what doctors say when they don't know how to treat you. I would so much rather hear, "I don't know."

3. Helps family members and friends to come to an understanding of what their CFS loved one is going through. It's so difficult to explain ourselves, mostly because people don't listen with the intent of understanding. Most people in my life try to tell me what to do to get better, but very few have asked me about my point of view with the illness. I hope this movie breaks assumptions and encourages real dialog between the patients and friends and family. As it is, it takes so much energy to communicate, and so much recovery time from speaking. It's extremely discouraging to have our energy wasted on words that no one truly listens to.

Please watch it. Help us to get help. Start the conversation that will open up people's minds to the reality of Chronic Fatigue Syndrome.


I would like to share a few personal thoughts:

"Unrest" serves as a great introduction to CFS/ME. I really appreciate the overview it gives. But that's just it: it's an overview of people who are bedridden from CFS. There is so much more to learn about it.

Many of us with CFS, like myself, are not bedridden. At least, I'm not anymore - not most of the time. Some days I am bedridden, but I'm mostly chair-bound these days. Not an office chair, a comfy reclining home chair. Yes, sitting up in a chair is a big improvement over laying down in bed. Back in 2013 I was bedridden for months, and then stuck in bed more than 50% of the time over a year and a half. If I didn't get lucky with finding my doctor I may still be bedridden. I got very lucky with finding a doctor who could help me... but he's not local. I fly half way across the country to see him, because all the local specialists I went to told me I was a mental patient and a hypochondriac. One of them did diagnose me with chronic fatigue syndrome after 6 months of going back to her complaining about the extreme fatigue. She also did the Tender Point Test and diagnosed me with fibromyalgia. She also diagnosed me with anxiety and depression after I came back to her to say that the Cymbalta she put me on was amplifying my pain tenfold and made me suicidal. Without running tests, she sent me to a psychologist. She didn't even send me to the ER after saying I was suicidal.  Most CFS patients are not lucky like me. They haven't found a doctor who can help them. They're stuck with doctors like I first went to, doctors that don't know what they're doing. Doctors with no training in Chronic Fatigue Syndrome.

My doctor is a Naturopathic Doctor, and a rather unique one (HumanNatureNaturalHealth.com) - I've learned that many people automatically dismiss anything a Naturopathic doctor has to say, so I'm careful who I reveal this to now. Someone even told me I'm hurting myself just because I'm seeing an ND and not MDs... as if I didn't already get worse under the care of MDs. But the fact of the matter is, no matter what your opinion on naturopathic doctors is, he's the only doctor who's made progress with me. When conventional medicine fails, I hope you can understand why we seek out the unconventional for help. Please don't dismiss what works. I'm not dismissing MDs either - they all have their specialties and play important roles in health care. They've helped me with other conditions, and I am very grateful for some MDs I've seen in my life. I'm about to go to another MD, a cardiologist. But when it comes to CFS, I couldn't find help from MDs.

Those of us who can work part-time were not featured in this film. I respect that. I understand why she didn't share our part of the story. "Unrest" needed to be convincing by showing the worst of the illness, and I was at that "worst" point for a while myself. I use the word "worst" lightly here, because I don't compare people's suffering. Suffering is suffering, no matter the level of it.

But I also think it's very important that people understand how hard we CFS patients are trying to keep living our lives. I work 12-15 hours a week. Some weeks that's too much for me. Other weeks, as long as I supplement correctly, I can handle a few more hours. Because I'm able to work part time, I find myself in this grey area of illness. Social Security Disability isn't taking me seriously, even though I can't work enough to pay my bills. Many of my friends and professional connections don't take me seriously, and I'm thankful for those who do take me seriously. They see me at my best: when I'm geared up for work, having saved my energy to spend during those hours. They don't see me when I'm back at home laying on the couch struggling to get up to go to the bathroom. They don't see me when I have to crawl up the stairs because I don't have the strength to walk up them. They don't see me when I'm stuck in bed until noon because my body won't wake up enough for me to get up, even though my eyes are open. I call in sick when I'm that weak, and sometimes I get in trouble for calling in sick - how can I be useful and reliable to the company when I call in sick? I have to carefully reserve calling in sick only on days when I'm doing badly enough that I can't drive. If I can drive, I can work, even if it's taking all my strength just to stand up. I hate this, because I believe in being an effective employee - why accept money for doing a poor job? I want to be able to always do my best at work. If I can't drive, then I'm sick enough to call in. I hide the rest of my reality from them, not entirely by choice, but more due to the nature of my illness. I also know how to supplement in order to boost my adrenaline enough to be able to keep working if I don't have the energy to make it, and my co-workers see this, so they know I have the ability to keep going sometimes... but when I do this, I pay very hard for it later. I need a lot of recovery time, and that recovery time can be painful to endure. It can mean I can't come back to work the next day. I'm typically scheduled for 4 hour shifts every other day, sometimes with 2 days between shifts. This works really well for me. Other people with CFS are not lucky enough to find an employer willing to schedule them like this... I doubt I could find another job in this town that would work with me this well. I can't express just how grateful I am for my job, and that's why I haven't quit, even when I've felt to sick to keep working.

And I know people with CFS/ME who manage to work full time, but they don't perform very well at their jobs. They're giving all they have just to be able to afford their home and food, but they make lots of mistakes at work and really struggle to maintain a professional image. Once they get home they can't clean, cook, or take care of personal business. They're drained. Their stories were not told either. I would love to see a follow up documentary to cover the rest of us who are not 100% bedridden.

Thank you for reading. Please share this along with telling people to watch "Unrest." Let's be heard. Let's get funding for medical research on CFS/ME. Let's educate doctors. Let's educate our employers, friends, and family. Let's connect with each other and bring more meaning and value to our sick lives.

If you would like to help take action, please sign the petition to get research funded:
https://www.unrest.film/nih-petition

Video Update/ Disability Process

I have needed to talk about or write about a lot that I've experienced in the last few months, but have been so incredibly fatigued. So today I decided to do video blogging. I made a playlist of 3 videos here:

Kindling Health Vlog Playlist: http://www.youtube.com/playlist?list=PLMMJaf2l9ztXEgTmt_IBt2NwWC0ZmFN8m

I personally don't like to watch blogs, I greatly prefer reading. If you don't like this format, I understand. Sorry. But for my mental health I needed to journal somehow.

Mental Health Part 2

I won't apologize for my last post in which I worried some of you. Thank you to those of you who reached out and expressed concern. I believe the post was important to write because I needed to express how much I was suffering. The way my illnesses affect my mental health is important to solving my illnesses, and hopefully helps others make sense of their illnesses.

Last month I flew out to see my doctor again. It was a long overdue much needed appointment. I believe the therapies I had done in the clinic stirred up some toxins in my body, which probably contributed to that bought of severe depression I just went through. It certainly made a difference in my body - I can feel less of a toxic body burden weighing me down. But I did stir up toxicity nonetheless.

I'm doing better again. Anxiety attacks have calmed down, and the brain fog has lifted enough that I no longer am stuck in depression. I don't know if it's due to my body calming down after the therapies, or perhaps it's because the sun finally came out. Suddenly, literally over night, the temps went from 60's to 90's. It's been in the 90's all week. The sun feels AMAZING. What's interesting about that is that my lab test results came back, and it said my vitamin D level is at 88. 88!!! It's taken 3 years to raise my level to where it's almost supposed to be (I should be in the 90's according to my doctor.) 3 years of 15,000iu a day!! The reason the sun helps me so much must not be the vitamin D it gives me. It must be something else. I believe I have Seasonal Affective Disorder, and winter is like a slow mild poison to my mental health. Mix that with stirring up toxins in my body and it's a disaster.

But there's also the other elephant in the room: stress! Stress is constant. Stress prevents recovery and rest. Stress makes me spend energy I don't have, wearing me out further. Stress puts my body into depression. The worse my adrenals, the worse my mental health. I lose the ability to spend energy on thinking. Memory recall, planning, dreaming/brainstorming, problem solving, learning... yep, it all shuts down. The more stressed I am, the less brain power I have. Stress is pure poison to me, and I get so frustrated and angry when people don't respect this fact. When people give me more problems, tasks to accomplish, or worries to worry about it actually makes my brain work less well and diminishes my ability to do what they tell me to do. The anger at others not understanding this problem stresses me further. I shut down. I ignore problems and tasks. It's fight or flight, but flight is the only option because there's no energy to fight. I simply cannot tolerate stress. Yes, I really do need to live in a bubble, and people don't understand this need either. Give me enough time to rest in my bubble and my body will recharge and I'll have energy to spend on working through stress again. But I'm burn out mode. I have NOTHING to give. So naturally, my husband wanting me to look for lodging that will work for me so we can go on a 10 year anniversary trip... sigh, stress.

I appreciate those of you who reached out to me and told me I can talk about my depression with you. It's very kind of you, and I need to know I have that kind of love and support in my life. This might sound backwards to you, but this is the truth: There's nothing to talk about. It's not a depression due to problems. It's a depression due to lack of energy and brain power. So talking would make it worse. It would use up energy I need to rest with. I know that some types of depression are solved with friend therapy and support from others, but mine is the type that requires me to be alone. I'm not entering further into the darkness through isolation. I'm letting myself recharge. Once a phone's battery is down to 10%, trying to use it only drains the battery faster, and the only solution is to stop using it and plug it in. I'm that phone at 10%. Well, I was. I'm probably at 25 % now. I'm no longer in "battery saving mode," but I'm on the verge of it. Let me charge more. :)

I know there's a lot to update you all on in this blog. I need to finish my mattress part 3 post, write about the new organic hemp sleeping bag I bought, talk about my new lab results, and go into a blood pressure and heart rate issue I have. I want to talk about some other product reviews too. I'll probably write about it all eventually, if I'm up to it. I can't take the pressure, so if it happens it happens. I only write in this blog when I need the therapy that comes from writing, so bear with me. :)

Results of New Supplements and Going Off All Supplements

I've had a rough month. Winter is never easy for me, but I chose to do some experimenting despite winter. I want to record some of what I've learned here.

1. Lithium Orotate

My doctor suggested I try this based on my gene data (23andMe.com). Lithium Carbonate has been traditionally used to treat bipolar disorder, but I've been taking Lithium Orotate. The difference is that carbonate isn't stable and a person has to take over 1,000 mg of it at a time to absorb enough to make a difference. Orotate, on the other hand, is highly absorbable and can be taken in small doses. I'm taking 5 mg a day.

For the first couple of weeks it made me feel a bit high - giddy, could laugh really easily, smiled for no reason at all, and had pleasant dreams. That effect wore off and I went back to "normal," except that I've noticed I haven't had nearly as many dark, depressing, lethargic, and apathetic thoughts. I originally started on inositol powder to help with my mood and energy. It did make a mild positive difference, but the lithium has done more.

I have also had regular large, deep, painful cystic acne since starting the lithium. I thought it was from taking the liver glandular, thinking it was detoxing me through my skin, but the problem has continued. I then learned from someone else that lithium gave them the same kind of acne. I'm now trying to decide if the better mood from lithium is worth this painful large acne.


2. Selenium

My doctor also suggested I try selenium for the same reason as trying lithium. Low selenium contributes to thyroid disorders, and my thyroid is disordered. I started and stopped the selenium twice. The first time I tried it turned me into a total zombie: very lightheaded and weak, dizzy, and unable to focus. I developed these symptoms immediately. A few weeks later I tried it again. It took 2 weeks before I developed the same symptoms. It gave me vertigo so strong that at times I couldn't walk in a straight line. So I stopped taking it. I didn't notice any other effect or benefit.

They say that the soil here in North Dakota is rich in selenium. I eat mostly locally grown organic foods, so I'm hoping this simply means that I'm getting enough regularly through my diet.

3. 4-point Saliva Cortisol Test/ Going off all supplements for 2 1/2 days.

I am very likely going to write a post on the results and preparation process when I get them. This is about the results of quitting all supplements for 2 1/2 days in order to do the test. I joined an adrenal fatigue support group on facebook based on the book Stop The Thyroid Madness. They say that it's very important to be off all supplements for 2 full weeks before doing the cortisol test, because you have to get all adaptions and other things that affect cortisol levels totally out of your body to see how your body does without support. I couldn't handle being off my supplements for 2 1/2 days, so I went ahead and did the test. I understand that some people think this will ruin the test results, but I honestly do not think it is safe for me to be off supplements any longer.

What happened?

- My blood sugar plummeted. With supplements it stays between 95-115 most of the time. Off supplements (I measured about once an hour for 2 days) I was staying between 72-98, most of the time I was in the 80's. I start to get symptomatic of hypoglycemia when I'm below 90, but below 80 I can't function. I was hypoglycemic a lot in the last 2 1/2 days. I did not change my diet of eating protein every 2 hours. (Keeping in mind that the adrenal glands do heavily affect blood sugar, and I stopped supporting my adrenals.) This morning (now that I can go back on my supplements) I did a test. My blood sugar was 84 when I got up, then after a protein shake including licorice (which affects the adrenals) it shot up to 124!!! That's a huge difference very quickly! I'm looking forward to going back on my pancreas glandular with chromium, which really helps keep my blood sugar stable.

- Heavy menstrual bleeding just 2 weeks into my cycle. My diva cup was full, and it was very dark and clotted.

- Blood pressure got wonky. I didn't see it ever dip below 95/58, which isn't much lower than I occasionally get even when on my supplements, but my pulse pressure narrowed by about 10 points on average. Pulse pressure is the distance between systolic and diastolic, and a healthy pulse pressure is about 40. My pulse pressure was often 25-30, but I had one reading of it at 55. This isn't stable for me. I'm generally around 30-40 when on supplements, even if my overall blood pressure is on the low end.

- Disturbed sleep. I couldn't take any sleeping aids for 2 nights, which was torture. Both nights it took hours of just laying there to fall asleep, even though I was exhausted from work. Once I got to sleep I found myself waking up every couple of hours. Small sounds in the house would also wake me up. I wouldn't feel rested during the day. Last night, after finishing the coritosl test, I took my sleep pills. They normally take about hour to kick in, but they made my whole body tingle and shut down within about 10 minutes. I felt like I was fighting sleep, but after shutting the light off and trying to sleep I couldn't fall asleep for probably an hour. Once I did fall asleep I stayed asleep, thankfully.

- Couldn't find joy in doing anything, even things I liked. The first day wasn't so bad, but the second day (yesterday) was awful. Everything felt like work, most things annoyed me, and nothing was enjoyable to do. I was apathetic, but worse than that, I felt emotionally muted.

- Poor memory. I found it hard to recall information, remember how and when something happened, and found it hard to retain the instructions I was reading over and over. After only 2 1/2 days without supplements! This shows how sensitive my body is.

- Poor vision and balance. A big part of this was being hypoglycemic, but even when my blood sugar was in the 90's I would have sensations of the floor moving below me, me swaying when I was not, and objects in the distance vibrating when they were not.

- Joint aches, but surprisingly no fibromyalgia. I was feeling very inflammed.

- Digestion plugged up. I gained about 5 pounds in bloat in the last 2 days, and my IBS is acting up. I did actually take my digestive enzymes to help, but they didn't help much. I was having regular bowel movements, but staying bloated and food wouldn't move through me well.

- Intense fatigue, but not constantly. I was able to work for the first 1/2 day and the second full day without supplements, but I was dragging and "flight mode" was kicking in a lot when I was encountering minor problems. At times it took willpower to lift my legs to walk. Yesterday I had trouble getting up and moving at times, but had weird spurts of jittery energy in which I was able to run up and downstairs to do laundry.


What did I learn from all this? That my supplements really are doing me good! I was able to write this post because I'm finally able to drink a cup of green tea, which tastes like heaven right now. My adrenal glands still have A LOT of healing to do, even after 3 years of trying to repair them. I don't need the test results to feel this, but I'm very curious about how my results will look.

Mycotoxins and Mold

My naturopathic doctor recently had me do a mycotoxin test through BiotrekLabs.com. The reason for this is because the lab gave him a test for free, and I got to be the guinea pig and try the test out. If the test was not free, I highly doubt I would have had a mycotoxin test done. As it turns out the test showed I have "alarmingly" high levels of all mycotoxins in my body:



I was given my actual numbers over the phone, and I can tell you they up to 3x higher than the top of the range. This is alarming - I was really surprised. Many thoughts ran through my head: Why isn't the mold killing me? Since aflatoxin is one of the most carcinogenic toxins known to man, why don't I have cancer when my body is full of it? Why am I not suffering a daily bloody nose, which is my typical allergic reaction to mold (I tested very high in allergies to most molds many years ago.) Wouldn't my symptoms be A LOT worse than this? Sure, I can hardly move some days, but I'd expect to be completely bed ridden with results like these!

Let's back up a little bit. The company who makes the test is not the most reputable, and accuracy is a concern here. For a $650 test I would expect highly reliable results. These results could be very accurate, but there's reason to question it. That said, it's no surprise that mold is a major player in my illness, and I do believe I am high in the mycotoxins for several reasons.

I've had some awful mold exposures in my life. I've always been so sensitive that coming into contact with mold would give me an immediate bloody nose with mild flu-like symptoms, while people around me were just fine. I lived on the coast in Oregon for my teenage years, a place that was naturally moldy due to constant high humidity. I could never visit the city of Bend, Oregon without getting very sick. Every single time I stayed the night in Bend, which was at least once a summer, I would end up with the flu after several bloody noses. I think a big part of the problem was that I am also allergic to trees that grow in that area, so it was a double whammy. When we moved to North Dakota from Oregon, we lived in a guest house for 3 months that was not in good condition. My mom and I disrupted a big bush of black mold on a sliding glass door in that house (I call it a bush because it was at least a few inches by a few inches.) Next thing I knew, both nostrils were pouring blood and blood was flowing down my throat. Mom grabbed a mixing bowl to collect all my blood and I filled it at least half full. I wanted to go to the ER, and I was sick with flu like symptoms after that exposure. Years later my husband and I moved into an old house in Boise, Idaho. At first it was hard to tell if there was mold or not - it was old, needed repair work done, but nothing obvious as far as mold. I was getting bloody noses at least weekly, but I tend to get them in Boise anyway due to the dry air. It was in that house that I started gaining weight rapidly, developed arthritis, started to rely on coffee and energy drinks, and felt my physical decline. One day the wall of the shower fell into the tub, revealing lots of mildew. I was very stupid at the time, assuming it was just mildew and as long as the lining of the shower got resealed onto the wall it wouldn't affect us. We lived in that house for 2 years. We moved back to North Dakota into my parent's house (my parents moved out as we moved in.) The skylight in the main bathroom was occasionally leaking, thankfully into the toilet itself, ha! One day it wasn't just a drip, it was an actual stream of water and a larger hole opened up in the ceiling. The repairman said he couldn't find any mold, but when we replaced the skylight we found that the roof board below the skylight was heavily rotted. The bathroom was renovated and sealed up, and the roof was repaired. Shortly after that, we had our windows replaced, and mold was found in the window frames. Thankfully, replacing the windows took care of the mold!

(The mold test kit's results for the main bathroom when the skylight was leaking into our toilet.)

I have a history with mold, as you can read. The question today is this: Am I still living in a moldy environment? My dad hired a company to test our house for mold. The results showed that the upstairs, where my husband and I live, had half the amount of mold as the outside of our house had (which is the base range.) The downstairs, where another family member lives, had double the mold as outside of our house. They called it "slightly elevated." For me personally, "slightly elevated" can mean "not at all safe."

Another clue as my biotoxin illness was taking the VCS Test (Visual Contract Sensitivity Test.) The idea with this test is that mycotoxins build up in our eyes, making it difficult to see contrasting colors. It seems very simplistic, and I'm not going to explain it well, so I encourage you to read about on this site. Dr. Richie Shoemaker (the leader in mold illnesses) highly recommends the test. I tested positive for biotoxins based on this test (the test was free):


We had a new washer and dryer installed this week, and when the guys from Best Buy removed the old washer we saw a couple issues. The backside of the washer looked mildewy, something I couldn't have seen before. The valve for cold water was corroded and leaking, something I couldn't have seen before. They were unable to install our washer because of that valve, so they shut it off so it stopped dripping, at least. We have no way of knowing if it was dripping behind the sheet rock, but it's very possible. But that's when it dawned on me: was I washing my clothes in a moldy washing machine? It was about 30 years old, had a leak, and probably wasn't cleaned properly for years. Are ALL of my clothes contaminated with mold from that machine?

So... knowing my history, you can see why it's no surprise that mold is an issue in my health.

Normal people who get sick from mold tend to get over it and regain their health after leaving the moldy environment. This is probably the least moldy environment I've been in for most of my life. You'd think that I should be improving, but my level was still very high on that test! It was that high after 2 1/2 years of a perfect anti-candida diet (no sugar, no moldy foods, nothing to feed mold), and a 6 month long Candida cleanse (which should have killed mold too.) Either my levels were even higher and they have come down with all this work, or what I'm doing isn't working and isn't killing the mold in my body. (Or the test isn't accurate, but I don't think that's a big factor.)

When I've looked into why my body doesn't recover from mold, I keep seeing research and articles talking about the HLA genes. Apparently, only 25% of the population have these genes, and those that do are highly prone to mycotoxin illness. I've been told that the gene makes it so the body recycles mold back into the body instead of excreting it out like in normal people. I have the genes. *IF* this is true, then how can I possible fight it? I could be recycling mold from when I was a little kid, right? So what hope do I possibly have? If I do mange to kill all the mold in my body, wouldn't I just get sick all over again from new mold accumulation in my body? Mold is impossible to escape!

So I looked at mold treatment options. The first thing that came to my attention is Ozone therapy. Apparently ozone IVs can cause mold in the body to implode, killing the biofilm and the mold itself. It's impossible for mold to survive in ozone. Sounds like a miracle cure that's easy, right? Nope! Ozone is HIGHLY toxic to humans. It's so risky that it's actually illegal, but there are doctors administering it. Strong people can survive ozone IVs, but someone like me? It's extremely risky. You will find many doctors who swear by ozone and its safety, but I am very cautious. Alternatively, I get treatments in a hyperbaric chamber at my Naturopathic Doctor's clinic. This chamber is oxygen therapy, which can do the same thing as ozone, only much much much more safely. The problem is that I don't live near my doctor's clinic, and I'm unable to get treatments more than a few times a year. I have yet to find a hyperbaric chamber anywhere in the city I live in. I've been told to drink food grade 35% hydrogen peroxide, which is essentially the same thing as ozone, but supposedly more gentle. This is not something I'm willing to try without my doctor's support, especially based on what 3% hydrogen peroxide did to my mouth (check out my black hairy tongue post.)

The next option that was made aware of is the Shoemaker Protocol. I had several people tell me it's the ONLY option for treating mold, and all the mold support groups I've looked into treat this protocol like the Holy Bible of mold toxicity. It's so popular you'd think it has a high success rate, but I keep digging and digging through the internet and can't actually find much about the success rate, just people claiming to feel better and people claiming they can't tolerate the protocol. The protocol seems to be a mixed bag. From what I'm reading, there are plenty of people who do not do well on this protocol specifically because of the main prescription medication: Cholestyramine (CSM). It's a cholesterol drug. This raises red flags for me. First and foremost, my cholesterol should not be lowered! Secondly, I don't tolerate medication well - my body readily rejects most medications I've tried. Thirdly, negative reviews of this drug for mold toxicity are very negative. It causes severe constipation, and you must take it with a laxative, causing a great deal of distress for many patients. It also absorbs nutrition from your food and supplements, so you must be really careful about how to take the drug so that you don't malnourish and dehydrate yourself. I hope you can understand my hesitancy to consider this protocol! I understand that when it works for someone it works very well in that it makes them feel better. But what I don't understand is why this prescription drug could possibly be more effective than natural binders like Zeolite, Activated Charcoal, or clay?  Dr. Shoemaker claims that they don't bind to the same toxins, but why not? I plan to do a lot more reading up on this protocol since it's pushed so hard by mold patients, but I think I need to remain skeptical. Listen to or read this really wonderful interview on this protocol by Dr. Shoemaker himself.

The other option I was made aware of is a protocol by Dr. Nick Gonzalez, may he R.I.P., as outlined in Suzanne Sommer's book Tox-Sick. (I will write a separate post on this book once I finish reading it, but so far I highly recommend it.) He advocates for regular coffee enemas and far infrared sauna treatments in addition to taking food-grade bentonite clay daily. He claims that the clay's magnetic charge and honeycomb structure makes it an excellent binder to absorb mold and carry it out of the body. I'm intrigued by this, especially since I know how much better I feel when I take activated charcoal regularly. I also found this study about the effectiveness of clay on aflatoxins in humans. I see problems with this plan, though: dehydration and heavy metal toxicity. Apparently there is less lead in the clay than in some nuts and vegetables, and apparently it's not a bioavailable lead. I'm linking to Wellness Mama on this one simply because I'm having a very difficult time finding actual studies on the risks of the heavy metals in clay - even the FDA approves bentonite clay as a safe food additive. Maybe my hesitation about food grade clay isn't well founded afterall? I have been using bentonite clay on my skin and as a toothpaste for a couple of years now and absolutely love it. As for the coffee enemas, I'm interesting in trying. I get colonic irrigations a few times a year at my doctor's clinic and they are exceptionally helpful! Enemas won't be nearly as good, but I'm curious because I can do them at home. I already use my far infrared sauna many times a week at home (I haven't written a post on this - what's wrong with me!?)

I'm glad my naturopathic doctor had another option for me. He put me on a homeopathic nasal spray with oils designed to kill mold in my sinuses. This is not a full solution, but we just want to see what happens. Mold loves the sinuses because they're a dark humid place, so starting by killing the mold in my sinuses makes sense. The spray is also designed to desensitize me to mold homeopathically.  It's a bit intimidating spraying trace amounts of black mold into my sinuses, but I'm not foreign to the concept and have had good results with this type of treatment in the past. For now, I'm content to address my mold issue with this nasal spray while I work on making my house as mold-free as possible. Ideally I'd be able to do a hyperbaric chamber regularly too, but at least I can stick with my diet and my sauna to continue to kill off and sweat out the mold in my body. I might even consider the food grade bentonite clay, after a lot more research and talking about it with my doctor. I need to go slowly, and I like that this is a very gentle start to killing off the mold in my body.