Lyme is a frustrating, expensive, and often hopeless, disease. I think one of the worst parts is that most doctors don't know what the hell they're doing. In fact, you'd be surprised at how many times I've have had to educate them on the illness.
It's bad enough that most of us go years and years without a diagnosis. I've talked before about the thousands and thousands of dollars that I've spent on my journey to learning what the heck was wrong in the first place. Procedures, tests, traveling to doctors all over the state. One year I spent over $2,000 just on special chiropractic adjustments - being told that it would most certainly cure my pain. Thousands in colon hydrotherapy - which helped my digestive symptoms in some ways, but was no where near a solution. Gall bladder surgery, back surgery - both of which I'm 100% convinced just made my disease worse.
But I haven't talked much about what I've tried since the diagnosis.
Yes, there are the standard antibiotic treatments. The thousands on herbal supplements, not covered by insurance, that's a given. But when conventional treatments don't cut it, you start to turn to more unorthodox "cures". I say cures, because while there is NOT a cure for Lyme disease, there are plenty of products all over the internet claiming to "cure" you of the disease. We are so desperate to get better, that it is easy to fall victim to these snake oil solutions.
Some are complete scams. Water in a bottle, marked up to $80, marketed to cure every ailment and then some. Memberships for companies "PROVEN" to cure Lyme - but, oh wait, you must pay everything up front.
Others are legitimate products, that have actually been known to work for some people. I've fallen victim to many of these. Positive online reviews, or even well-intentioned friends who say it worked for them, or someone they know (some Lyme focused, most not). The thing that sucks about Lyme, is that every patient is different. I've never come across anyone who has all of the exact same symptoms I do. So while one product may really work for one Lyme patient, it's not guaranteed to work for me.
The multitude of treatment options for Lyme is substancially overwhelming. It's basically trial and error, and in my case, it's mostly been error. Here's a list of some of the things I've tried:
Essential Oils: Back when I was first diagnosed, I was selected out of a list of candidates, by someone who wanted to "sponsor" me, by paying for my oils and products. You have to admit that that alone sounds kind of smarmy, but it ended up being a friend of a friend - a total sweetheart with good intentions. This was right before EO's became a huge thing. I still remember the feeling when she called me (similar to how I felt when I was diagnosed) - excitement that God finally landed something in my lap to help me get through this miserable life. I followed the protocol to a T for months, to no avail. That was the beginning of a long line of disappointments. I still use oils pretty much every day, for many things, but it definitely hasn't helped my Lyme symptoms.
Massage: I still do this every month. People think it must be a real treat, but in reality it hurts like hell. Sometimes I wonder why I still do it. I think because I am so desperate for even just an hour of relief, which sometimes happens. They say deep tissue massage can actually be bad for Lyme patients, because it draws out toxins from our cells - and because we have so many toxins - it can often be too overwhelming for our systems. I've definitely felt pretty horrible after treatments before, that's for sure!
Acupuncture: I'm still doing this as well, probably because at least this and massage are covered by insurance. I usually feel better during treatment, and for - oh - about 5 minutes after. But by the time I've been in the car for the 20 minutes it takes me to get home, I'm in more pain than when I started. And same as with massage, it often just makes me feel worse.
Cleanses: I feel like I've tried everything under the sun here. Liver cleanses, parasite cleanses, blah, blah, blah. I've tried juicing. I've spent thousands on products like Isagenix and Keto/OS - all making claims to not just help with the tremendous weight gain I've endured from this disease, but also with my other symptoms (inflammation, insomnia, fatigue etc.) Nope, nope and nope - none of it has worked for me.
Diet: Similar to the cleanses, I've done a lot of experimenting with my diet. I don't know how many people have made me feel like they think I'm being dishonest about what I'm putting into my body. Because paleo, autoimmune, keto etc. etc. works for them - it has to work for me too. It certainly helps, and I can tell a difference when I stray away from eating strictly. But it certainly isn't blowing my mind or changing my world.
Cannabis: Some of you who know me might be surprised by this one. 10 years ago I would have never thought I'd be dabbling in marijuana. But things have changed, and like I said, I'm desperate. I've read SO many positive stories with this - including from a lot of Lyme patients; especially with pain, which is what I need the most relief from. Earlier this year I had several appointments with a doctor, who issued me a medical marijuana card. I was not interested in THC and getting high, but in the medical benefits of compounds like CBD, which is non-psychoactive. Unfortunately, I have had no success. Perhaps I'm not choosing the right products - the amount of strains and applications (lotions, edibles, patches, pills) are inordinate. But so far, all that happens is that I become more aware of my symptoms - magnified sinus issues, off the charts sound intolerance...even my pain has been more acute. And the stuff that's supposed to help you sleep seems to do just the opposite for me.
Magnetic Therapy: The jury is still out on this one. You can read more in my previous blogs about my journey with Lymestop. So far, since October, I've had 2 really good weeks (good in Brianna terms, anyway). It could take up to a year to notice results, which means I could have 8 more months to go. At times I think I'm feeling better, and then an hour later, I'm changing my mind. Unfortunately, my environment (stress, mold, etc.) is not helping the situation, and is also something I can't seem to get away from.
Beach Therapy: Ok, I kind of made this one up. I swear I almost always feel like I'm better at the beach, and there actually is a science as to why this happens. We went to the Oregon coast this last weekend, but we didn't get to spend much of any time actually on the beach or even breathing in the fresh, ocean air, because it was so incredibly stormy the whole weekend, with 20mph winds whipping rain into our faces. Plus we saw signs of black mold in the house we stayed in, so that pretty much negated the positive effects of the ocean. And also I think my body is at the peak of my stress levels, where nothing will make me better. But normally I feel amazing. I'm trying to convince my hubby we just need to buy a coastal house and live as beach bums, but he's not having it!
Flotation Therapy: This is my newest attempt at healing. Although not necessarily a "cure," it is more of a way to manage my symptoms. For those who have never heard of it, in short, you're floating in an oversized tub of 1,000 pounds of epsom salt, resulting in anti-gravity and sensory deprivation. It takes pressure off your spine and completely relaxes your central nervous system. Here's a link to the place I'm going if you want to read more:
http://www.olyfloat.com/benefits/
I've done just one float session so far. At first I wasn't sure if I liked it, but by the end, I really did. My pain that never ever goes away, was gone by the end of the session. It did come back, of course, but I can see how repetitive visits could train your brain into relaxing muscles etc. I recently bought a membership so I can visit at least twice a month, so we'll see how it goes. Infrared sauna is also inclued in the membership, which is supposed to be good for Lyme, although I'm very apprehensive to try it since I always feel so dreadful when I'm overheated.
Propolis: A gal on one of my Lyme FB groups recently suggested I try propolis for my mold/sinus issues. And lately, I've been seeing that word everywhere, so I decided to check it out. Dr. Klinghardt - the Seattle doctor featured on the movie Under Our Skin - swears by it as a big part of his anti-mold strategy. And it's not just for mold, but for all volatile particles in the air we breathe - bacteria, viruses, smoke, dust, etc. A few weeks ago I purchased a vaporizer for my car, since pollution while I'm driving wreaks havoc on my head, as well as a nasal spray. I've noticed a small enough improvement, that I've decided to keep trying, and purchased a vaporizor for my bedroom as well. Here is the link to the place I buy from. It also has statistics from a study that's been done in schools, which shows vast improvement in the health of the students:
http://www.beehealthyfarms.com/index.php?id_product=17&controller=product
There is a whole host of other things I have not tried: IV treatments, Rife therapy, Hyperbaric Oxygen treatment....the list goes on and on.
If you have a little time to spare, check out this video of a guy who devoted a LOT of time and research (and money - seriously, how does he afford it?) to Lyme and different treatments. He got better in only a few months. I'm guessing he didn't work at the time - I know some people who spend their entire day detoxing alone, so this sounds like it has to be a full time job. The video is long and can be a bit boring at times, but is definitely an interesting watch, especially if you or someone you love has Lyme.
https://www.youtube.com/watch?v=jdTLXPFR3T8&feature=youtu.be
If nothing else, at the 49:45 mark, is a heartwrenching piece from a gal who's father died of Lyme - where she compares the disease to cancer, and how each illness is perceived by the outside world. Very in tune.
I also have to mention that I've spent thousands upon thousands of dollars on new products to make myself (and mostly my pain) feel better. I've gone through 5 beds in the last 2 years, trying to get some sort of relief through the night. I've gone several places where I slept better and loved the bed, but for some reason everything I've tried at home hasn't worked. And this is not cheap! We were able to return one, but with an $800 restocking fee. The bed I have right now we are still paying off, and it's so horrible that I'm ready to start looking for cheap-o beds on craigslist until I find the right fit. I have a closet full of mattress toppers, mattress pads, and a ton of pillows - all in effort to find something that helps me sleep more than a few hours, and without writhing in pain all night.
Back when my pain first started, and I wasn't able to go to the gym any longer - I bought an elliptical, thinking that if I had to stop 10 or 20 minutes into it, at least I could do it in the comfort of my own home. Now it just sits in our extra room because I can't even stand without pain. I bought a Power Step Plus after trying it out at a Home Show, it helps a little, but probably wasn't worth the hundreds of dollars. I've spent so much on things like back massagers, back pillows, and heating pads, it's ridiculous.
Anyway, hopefully this is good insight as to yet another reason why a person with Lyme can feel so hopeless, lost and frustrated. And why it's difficult to not be a skeptic when I come across another wellness tool or "miracle cure". I always welcome suggestions. Unfortunately, until the day that they find a tried and true cure or solution - which may never happen (no thanks to the government and insurance companies of course) I will likely be spending many more hours of research and money on my journey of trial and error.
