I had an appointment with my LLMD a few weeks ago, and it was quite...insightful.
First, we discussed how horribly I felt in July and the likelihood of my symptoms primarily stemming from the Autostool Therapy I've been doing. While the doctor agrees that we are getting close to the target dose, the one I took on my birthday was much too strong. So we'll be doing a little more tweeking, trial and error.
I told Dr. W. that my MCS (Multiple Chemical Sensitivity) has gotten much worse over the last month - remember how I mentioned that merely opening the cap to a sharpie made me ill? He said this is actually a good thing; that it's as if we are peeling off a masked layer slowly but surely, to get to the root. Which is great news, but it sure sucks in the meantime, especially because it’s a daily battle.
Driving to and from work is difficult because of all the car exhausts. Even when I pass by someone who's smoking out their window I'm affected. At work I'm all-too-often in the same room as someone who just took a cigarette break, or women who wear symptom-inducing perfume. Even at home I need to be careful - the other day I bought a new detergent and it made me feel so horrible, and it took the rest of the day to air out the house, and rewash all of the clothes.
The other day I mentioned my MCS symptoms to someone, and she actually laughed. It hurt because that's how I often feel in this world - that my illness is a big joke. I think people don't understand - it's not just that I have to deal with a massive headache when I'm around these things. My sinuses become severely inflamed, my joints stiffen up, I get sick to my stomach, and my whole body throbs in pain. It's not fun, and it happens literally every day! It's unfortunate that we live in such a toxic, toxic world.
Anyway, next we talked about my Elimination Diet. I just finished a two month experiment, testing all of the major food sensitivities. And just like last year when I did this, the results have been confusing. My body is being wishy-washy about it. For instance, when I tested nightshades, I noticed symptoms right away when I added in peppers and potatoes for breakfast, but then when I tested at lunch, and then again at dinner, nothing happened. This happened for nearly every item I tested. Also, because I often feel poorly at random (lethargy out of nowhere for instance) it was tough to tell if my symptoms were from food or just my Lyme.
However, I do know that any kind of symptom from a food probably means that my body is recognizing that particular item as an invader, and that my body is likely taking hits in other places I'm not recognizing as an "obvious symptom".
Doctor W. reaffirmed that I'm still dealing with a leaky gut, and that I'll likely need to go off of all of these foods (gluten, sugar, dairy, soy, nightshades, eggs) for at least six months. It was "easy" enough to do for two months, but SIX?!
Honestly, I know I should probably always eat without these things, so that my body can properly heal and reduce inflammation. It's definitely a mental game. For me, it’s much easier to eliminate something when I know for sure it will make me feel ill afterwards. But when it's a 50-50 chance, or I don’t know if I’m for sure intolerant, I have a harder time eliminating. This will be a challenge for me. But honestly, the willpower itself isn't really what holds me back. It's having the strength and stamina (and finances) to prepare healthy meals. Anyone who eats, or has eaten this way, knows that it takes a LOT of work in the kitchen to prep meals. When I get home after a long day at work, I seriously can do nothing but sit on the couch because I'm so exhausted and in so much pain. It's tough enough to stand at the microwave for a few minutes, let along prep a meal for 30-60 or more! If I had someone to plan and prep (and hell, cook!) for me, it would be a total game changer. If there are any takers out there let me know! ;)
Next, we talked about a recent test I had done for mycotoxins (mold). Earlier this year, we conducted an ERMI cloth test at our home, to test for mold, and it came back clear. Instead of continuing to take the time (and money out of our pocket!) to test the environments I'm surrounded in, the doctor suggested we test ME. So I mailed in my pee. ;) The test started by taking a healthy dose of glutathione to release toxins; wow that made me feel like total crap! Then I had to eliminate water intake for the rest of the day, while keeping all my urine in a jar. TMI, I know - but I thought someone out there may be interested in how it's done. :p
So...I got the results back and they were ABNORMAL! This is a big deal for me! First of all....after hundreds of tests over the years, where 95% of them came back "normal," it's so nice to see a piece of paper that confirms there is actually something wrong with me! :)
This test in particular looks at four different mycotoxins, and it turns out I have high levels of ALL FOUR. For instance, one of them, called OCHRATOXIN, which is present if your levels are 2.0ppb or higher, came in at a 20.72600 in my body. Yikes. How did this happen?
The doctor tells me that mycotoxins can build up in your body over time. When my husband and I first moved to Olympia, we rented a condo from a property management company. There was a room off of the bedroom that had a fan built into the wall, which I didn't think much of at the time. But two years later we started noticing mold growing on a lot of our things, and then realized it was in the walls. Soon after we reported the problem, we received a letter that the owner (from California) had decided to sell, and that we needed to move out.
That was five years ago. At the time, I was very newly diagnosed with Lyme Disease (a few months before), and knew very little about mold, let alone the effects mold can have on a Lyme patient. Mold affects everyone differently. For instance - I felt sick from it, but my husband who has a very good immune system, barely noticed a thing. It can wreak havoc on a person who already has a compromised immune system. And in the end, if someone with Lyme has mold toxicity, they have a very small chance of recovering their health. Also, many Lymies, like me, also have MTHFR - which means we are genetically unable to dump toxins like other "normal" bodies can. Instead, the toxins are reabsorbed into our blood stream through the intestines, which means our bodies are swimming in toxins. These toxins then trigger something called cytokines, which are what cause Lyme symptoms. Not good, not good at all.
Mold is a tough thing to avoid - especially here on the very wet Pacific coast. I know a lot of Lyme patients from the Seattle area end up moving to a drier state. And most of the time, remediation includes getting rid of most belongings. We had to throw away our mattresses and other things, which made for even more of a financial hardship. I can't even imagine what it would be like to give it all up and move to a completely new place.
I've thought a lot about my health over the course of time. It wasn't until we moved here from Eastern Washington that my sinuses became chronically inflamed, and more importantly, that my pain became a thing. It feels like I've lived with this pain for forever, but it really started when we moved into that moldy house! And I've had several tests done that have proved I have mold in my sinuses. In fact, TMI here, but I often find BLACK snot in my tissue after blowing my nose!!
With that said, I have also thought about the fact that we've been in a "clean" house for five years, and that I've aggressively treated my Lyme for that long as well, with little to no improvement. Yes, I have a tough case. But is there something more? The only other environment that I'm in constantly, is at work. It's an old building that has seen some obvious water damage. And, in fact, several other "healthy" coworkers swear that they feel worse in the building as well. Three weeks ago, I spent about five minutes in the basement, where all of my event decor is housed, and I felt SO AWFUL; I experienced a sudden onset of headache, sinus congestion and stomach ache. A few minutes later came joint stiffness and all-over body pain. And a new one to me - very apparent breathing issues. It was like my lungs were in a vice-grip; breathing was labored and I felt like I had a rock in my chest. This lasted for several hours, and the pain lasted through the rest of the day. Then, a few weeks ago, I stepped down to the landing for a mere 10 seconds, and immediately felt the head symptoms. Earlier this week, I simply walked by the door that was open to the basement and started noticing these symptoms as well! I'm sure there are some people that think this is probably all in my head. But I've gotten very good at paying attention to my body and what causes symptoms, and I know there just has to be something going on with that building!
The day after my doctor appointment, I approached my boss about these concerns. A week later, she had a company come in to test the building, so I'm awaiting the results in anticipation!
I could probably post an entire blog about mold. I believe it's a much bigger problem than people realize. Although, I have seen quite a few cases on the news lately, so hopefully more people are becoming aware of it. Recently, my diagnosing LLMD blogged about Lyme and Mold. He noted a study that was done which found that 93% of patients diagnosed with "chronic fatigue syndrome" were found to be positive for at least one of the several black mold toxins. That's crazy. Mold is a lot like Lyme, where the symptoms can be presented, or diagnosed as, something else all together. Below is an extensive list of symptoms from mold toxicity.
Here's a good website, if you're interested in reading more about mold! Health Effects of Mold
The last, and most exciting thing we talked about, was a relatively new therapy for Lyme - PEPTIDES! My doctor recently attended a conference about this; he told me that about 17 of his patients came to mind while there, but that I was #1 on his list. That's the sign of a good doctor - that he thinks about his patients more often than just when we're sitting in front of him!
What are Peptides, you ask?
A peptide is a short chain of amino acids that are linked together; a small protein that acts as a signaling molecule in your body. Dr. W. likened them to a construction site foreman - that they bind to receptors on the cell surface and tell other cells and molecules what to do and when to do it. There are thousands of different kinds of peptides with different purposes - to lose weight, gain muscle, increase brain productivity, etc. Insulin is a peptide; certain ones are also used for cancer patients.
The peptide used for Lyme treatment is called Thymosin Alpha-1 (or T a 1), which is produced naturally by the thymus gland and used by the body to recognize and eradicate foreign invaders. With Lyme, this means the T a 1 can assist the immune system in locating the Lyme bacteria and infected cells. Normally, these bacteria are very good at camouflaging themselves and hiding from treatment/medication - so it's a HUGE deal to find something that can still find those suckers. In short, this peptide treatment will make my immune system bigger, stronger and smarter. It should also help in decreasing inflammation, which is another huge deal. AND unlike most other treatments that cause a patient to become much more sick before noticing progress, there are no known side effects. But wait...there's more! Another con to other treatments is the length of time one must dedicate themselves to, before seeing results - many of them take at least a year of dedicated treatment before seeing any progress. This is supposed to show progression in 4-6 MONTHS!! What?! I'm so down for it.
But yeah, of course it's another $300 every month. My car is down to it's last legs...all the lights are on, airbags don't work, breaks squeak...you get the picture. It's probably not safe. But if I have to choose between this new, finally promising therapy, or a car payment...I think you know what I'm going to choose.
And I'll have to inject myself daily. But this girl is so used to needles, ya'll. No big thang.
I'm now 1 week in...and even if it takes all 6 months for me to notice anything, I'm all in to keep trying. And oh yeah - the doctor muscle tested the peptides while I was there and my body reacted positively, so I'm hoping, praying, wishing this will finally be something that helps. Please, God, please.
