I am not sure where to start so I will go back. Way back, to my childhood and try to be quick so you don’t get bored reading this. On my other site (here) which started about 4 years ago, I left off with some posts regarding my gastrointestinal (GI) struggles. (I no longer update that blog due to my business and having those posts here but I still have all my old posts over there.) In other words, this is not a new topic for me or for some of you whom have been reading along or even listening as I have questioned and complained and worried and been angry, exhausted, beaten.
Childhood (Early 80s in to 90s):
As a young child I was not the most healthy. I had pneumonia, ear infections, colds, allergies, asthma, and acne. My back even bothered me when I was in high school, which I chalked up to working at Subway and being on my feet more (which in hindsight is silly since I was always on my feet and I was young). Also in hindsight and as I learn more, these illnesses have one thing in common, inflammation. My immune system was not great. And neither was my environment. I recall eating a lot of sugars for one.
I grew up in the country, only a couple of miles where I live now. I lived with my 6 siblings and parents. I was active. We all were. We also had a dog and lots of country land. We hiked the woods and the old railroad. We practically lived outdoors. We did not have Frontline for the dog back in the day, so a chore we had was to grab a gallon bucket, fill it with water and pick the ticks off Mitzi. Sounds disgusting but as kids, we didn’t care. I didn’t. I loved that dog. Her and all the cats and kittens and puppies. It was a little girl’s dream (not the ticks). I had a wonderful childhood aside from the illnesses.
I recall as a child I liked to play “house” and when it was nap time, I really really wanted to actually nap. I also remember being a mini-beast when I didn’t get enough sleep. I slept. A lot. I also recall when I had my first asthma attack and also another allergic attack after being outside on a walk with my dad. We went up around the woods near by. I do not exactly remember, but I broke out, maybe in some nasty rash. I don’t remember it being horribly painful or anything, just not right.
As a tween (between child and teen years) I began to, you know, change, like all kids that age. I would come home and shelter myself in my room. I really wanted and needed time from very little stress or stimulation, besides tv of course. I ate junk. I didn’t really gain unhealthy weight or anything but I started breaking out. I was an acne kid.
Early Adulthood (Late 90s in to 2000’s):
I would say I was not overly sick and after I moved out my allergies and asthma improved. My acne did not, until I became pregnant with Evan. I had gone through 2 rounds of Accutane and various antibiotics. Typical, and horrible now that we know better. I also tried birth control and that helped a lot. After Joe and I were married I did some hormone testing up where Joe worked and was told my progesterone was low. I usually felt okay aside from the acne. I felt like I could not really loose the extra 5 pounds, which in hindsight was probably inflammation, and I ate junky still but tried more to eat low-fat, high-carbs, like we were all told to do. One summer, I was running 35 miles a week and did not actually get in to better shape than I am now, and I don’t run that much in a week. But, my asthma was obviously under control.
Baby-bearing Years (2006-2012):
I had Evan when I was 26. His lack of sleeping through the night was extremely hard on me. It was very tough and lasted a year. I nursed him, as I did Nolan and neither of them slept well until they were about 14 months old. Not too a-typical, but very hard on me. When Evan was 1, Joe was bitten by a deer tick after turkey hunting. He had it removed the next morning (less than 24 hours of contact for that tic). He changed. And when Nolan was 1, in the fall of 2009, so 2.5 years later, he was diagnosed with Lyme, which was contracted from that tick in 2007.
I became pregnant with Cal in 2009. There were a few days to a week when I had moments of blurred/spotty vision. I ignored them and one time told Joe. He said he had been learning that Lyme spirochetes are found in sperm and therefore not ruled out as an STD. So, I was tested through his lab. It came back negative.
Obviously, as time went on we learned of Cal’s diagnosis. Looking back, I had a lot of bloating during that pregnancy, more than the other boys. I had him and it was stressful and hard, but like the other boys, it was because they were all babies, with nursing needs and they just were typical regarding sleep. When Cal was a few months old my back hurt very bad in one spot. I did a lot of treatment and even had an MRI the following February (2011). I slowed down my running and did some other things and it got better. I also went dairy and gluten free in June, which in hindsight, probably also helped my back because of gluten and dairy and the correlation of inflammation. It sure cleared my skin up!! So, Calvin was 1, I went back to work at school, and Calvin was sick.
He was even hospitalized that fall and it was miserable. One evening I think I had a panic attack and drove myself home from St. Paul (an hour drive) around 3 in the morning. I was still nursing Cal and he really only wanted me during that time. After that, he continued to allow me about 4 hours of broken sleep a night. I was craving sugars like mad. I was not really like that before.
I would eat sugar and I would be so excited when the boys were all asleep and I could sit with some junk and watch tv for a bit. I was actually in decent shape from the dairy and gluten and new swimming hobby.
But things changed around Christmas, 2011.
The Beginning Of My GI Problems (2012):
In January I would notice my stomach hurt extremely bad when I was up with Cal in the middle of the night to nurse him (I nursed him until he was 2). Then in the mornings, my stomach was bloated. I became constipated. This continued throughout the day and was always worse at night. I was still not sleeping much. I chalk this time of my life up as Hell On Earth. I was miserable. I did not start menstruating yet either, as I would have expected since Cal was over 18 months old. So, I set up my annual physical. I shared my concerns with my doctor. I was told the lack of cycle was due to still nursing. But, I knew there was more to it because of my GI problems.
I went to another doctor who set up an ultrasound and X-ray. I was told there was not a problem with my organs and I was constipated. I was also told to take Mire-lax. No surprise, it did nothing for me. So, I went on to see the GI specialist. A great man who said he knew something was up since I don’t seem the type to complain of pains. He was right, I don’t. But I was. Something was wrong. I had the gallbladder test. It was/is fine.
Dr. Paulson, Naturopath (Mid 2012 – Mid 2013)
During that time I talked with a co-worker of Joe’s. He suggested I take Betaine HCL to help with digestion. I did and felt really good. For about 3 days. This is my pattern. Through out this journey, when I start something that works, it does not last.
So, I thought about going an alternative route to find out why. Because the doctor who told me to take Mire-lax just said she did not know why I was constipated and bloated and not menstruating yet. I get it, there could be a lot of reasons. But, I am the type that wants to know why and keep my organs unless I really actually need to get rid of them (gallbladder for example).
I first visited a naturopath, Dr. Tricial Paulson, in August of 2012. She told me she thought I had a yeast overgrowth in my GI. I quit nursing Cal and got to work. I changed my diet to include only a max of 1 serving of gluten free grains, 1 serving of fruit, and 3 servings of protein per day. I could have beans, but they were very hard on me. However, as I started changing my diet, I started realizing the profound impact food was having on how I felt. I dropped weight and felt good except the persistent GI problems. I had good days and very bad days. I cut out grains but still ate fruit. I still craved junk but ate very clean. I felt better after a few months but then that changed again.
Backing up a bit, I resigned from my school job earlier that fall too because I just could not handle the stress of balancing home with work. It felt like way too much on my plate so I focused only on my family and photography, hoping to keep life a bit more simple and flexible for the unforeseeable situations with the kids.
During my time with Dr. Paulson we went up and down and all around. In a nutshell, she would tell me I am doing my due diligence but something else is wrong. I did other tests. Everything was always negative/normal which left me with zero answers.
Dr. Foley (May 2013 – Current)
Joe had suggested I see Dr. Foley (out of MN Natural Medicine) before I saw Dr. Paulson but when I called there was a 2-3 month waiting period and I could not wait that long, so I just left him on the back burner. In February of 2013 I called him because we were at the end of what to do as I worked with Dr. Paulson. I got in to see Dr. Foley. I was told I was “textbook hypothyroid” and there were some concerns about past use of a pharmaceutical called Accutane and maybe even Lyme.
I went on a Paleo diet but I did not feel better so I cheated now and then and just always craved junk still. My moods were not exactly all over the place, as I never felt really positive and good. But I recognized that I had been struggling for about 6 months with bouts of depressive states. I was quick to become angry, little patience, more sadness and crying, and nothing was good at times, etc.
I shared this with Dr. Foley and about a month after I saw him, and a colonoscopy later, he said it sounds like I have an infection and inflammation problem going on. My colonoscopy was to make sure there wasn’t any damage from Accutane, which there wasn’t but I did/do have a floppy colon. Sorry if that sounds gross. BUT, it is another symptom of hypothyroidism as Dr. Foley was able to point out.
He put me on a Lyme protocol and I could feel the inflammation going away. I lost 5 pounds in less than a week (I gained 20 in January-February of that same year – forgot to mention that!). I felt happy and motivated, like I never have felt in my life. It lasted for, you guessed it, 3 days. Then I was miserable again for awhile and then went back to feeling okay but def. better than previously.
I tested for Lyme with 2 tests before that and they were negative. It was a study the lab where Joe worked for was conducting. So, we didn’t think I had Lyme (Joe and I didn’t).
I just still was not feeling healed and better last fall. So I asked Dr. Foley about the hypothyroid issue but my numbers were in the normal range. He said we should try it out because it is not always the best to just go with the numbers. I could have a thyroid receptor issue. So I started medication. I felt okay, nothing really profound and he upped my doses and (Armour) and then switched me to straight T3 (synthroid) this past January. I just was not responding to the medication.
Dr. Foley said he wanted me to do the Borrelia culture test which was over $1,000 and took 16 weeks. Joe and I did not feel like it was worth the cost for something that was likely going to be negative. After all, I had 3 other blood tests for Lyme that were negative.
When I meet with Dr. Foley in January of this year he had me do a CD-57. This would indicate a further need for investigation if it came back low. It did. He said that based on my number (37) he would say I had Lyme. But Joe point out it could be any co-infection (there a lot of infections you can get from ticks, not just one). Well, we took a gamble and I decided to just do the culture test on January 20th. This test is a borrelia culture, which would be more accurate than any other test.
My weeks 2 and 6 reads on it were negative. In the meantime I have been working on my diet. I switched to Ketogenic on March 31st. I felt amazing!! Lost 10 pounds in 1.5 weeks. Energetic, little bloating, etc. But nearly 2 weeks ago it changed. I started bloating again. Tired, stressed, down, angry, and just plain old sick of this.
I have struggled with energy levels. Some times I can go and go and go and other times I don’t think I want to walk to the mailbox to get the mail. When I sit still it is dangerous. I feel soooo tired.
Last week on Tuesday I saw Dr. Foley. My results were still not in. He sent me home with 2 products, Intesti-Nol and a blend of essential oils. I left with the plan he was going to try and get me “herxing”. If you do not know what that means, it means to have Herxheimer reactions to the supplements due to toxin release as the bad guys are dying, which in this case are natural antibiotics and antifungals. Well, I have had a horrible week, more so than in a long time. And, I still do not have regular menstral cycles, a current problem I’m having.
In otherwords, something is wrong with me. These words have been spoken so many times over the past 2.5 years. I have felt trapped in my body. I have thought about how I do not want to live another day like this, let a lone the rest of my life. And this is not drama. It is legit due to the misery. I cannot describe what it feels like, as I’ve written before.
Yesterday my culture test results came back. I have Lyme.
I am exhausted writing this and will leave off for now. There will be more to write. I probably left important things out, like my brain-fog and forgetfulness that I would tell people was not my normal. I was never that bad and what do you usually hear and think?? It is because you have 3 kids! Yes and really no.
Or, my aches and pains from running that developed in 2009 when I was training for my marathon and now that I eat Keto I no longer have any.
Or, the 10 pounds I gained this past January, in about a week. Inflammation, water weight!
I’ll post this now and fill in blanks later. There is going to be more. Lyme is a nasty and horrible disease. And if you are still reading this after reading the whole thing, I never said I had a deer tick or a bullseye, or a rash, or a fever, or that my symptoms started in the summer. Lyme is still a very mysterious infection, one that needs a lot of attention because on top of it all, a pregnant mother transmits it to her unborn children. I have 3 children. They need to be tested.