My Lyme (from former blog)

Here is a post from my former blog about Lyme.  It’s fairly information heavy, but gives you a sense of what things have been like for me over the past year.

Okay. Here’s the deal. I feel somewhat obligated to comment on the health issues I’ve been going through lately. A lot of my readers may not know my health problems, and so I’m writing to give folks a point of reference when I mention it in my blogs. And hopefully to encourage others that are out there that are experiencing the same thing…

I have Chronic Lyme Disease. Lyme disease is caused by a spirochete that can and does drill into any tissue: bone, muscle, brain, etc. The spirochete itself is not “dangerous.” What is “dangerous” about this little bug is that it continually releases a neurotoxin every minute, every second of the day. So, every moment of every day there are neurotoxins being deposited into my muscles, bone, brain, joints, on my nerves, in my blood stream, everywhere. This is why Lyme is systemic and causes multiple organ and system damage. Consequently, Lyme is not something I can treat casually. It’s literally a 24/7 battle that is constantly having to be attended to and supplements adjusted for on a daily basis. Yeah. This is not a club I wanted to be a part of.

What Lyme is Like For Me.
Neurotoxins are, well, toxic. So symptoms can vary from person to person, but here’s a typical day for me:
Exhaustion after a full night’s sleep. Constant entire body aches. Crushing fatigue. Extreme skin sensitivity, including places that feel like they’re burning. Word finding issues, general confusion, inability to focus and memory problems. Strange digestive issues. Weakness, difficulty in carrying objects or climbing stairs. Candida flare ups. Joint pain. Nerve pain. Headaches. Nausea. Difficulty balancing and general clumsiness. Ear ringing. Hot flashes. And the symptoms worsen when weather fronts come in. 

They happen on my “bad days.” And I have, generally 3- 4 days out of the week that are “bad.” Those are “non-functioning” days. I don’t get much done on those days.

Here is what unsuccessfully treated Lyme sufferers can experience: MS, ALS, Parkinson’s, Fibromyalgia, chronic fatigue, depression, “Lyme-rage,” Guillain-Barré, paralysis, and other debilitating issues, including, um, well, death. This is what I’m in for if I don’t treat it now.

How I Contracted Lyme
Lyme is very hard to pin down. It’s called the “Great Imitator” because it looks like so many other conditions. So, it took a long time before I figured out that I had it. I theorize that I contracted Lyme on a hike when I was 9 months pregnant with Jacob. I became symptomatic about 2 months after Jake was born and noted extreme differences in my health that I had not experienced before.

The general medical mantra is that Lyme Disease is “hard to get, easy to treat,” and that it is not chronic. Check out the map, you’ll see that if you live in an area where it’s rampant or endemic, it’s EASY to get.  Check out the NOVA/WV Panhandle Area. Nice little shade of blue, eh? Lyme Disease is the fastest growing infectious disease in the United States.  Doesn’t that make you feel warm and fuzzy? Yeah, me neither.

I’m not even going to go into to all the medical idiocy that is out there, because that’s a separate blog, but if you’d like to know more information, you can watch the movie, “Under My Skin,” a new, compelling documentary about Chronic Lyme and the politics and conflicts of interest that are replete in treating this disease. At least check out the trailer, it’s worth the look.

But, anyway…there are a few ways you can determine whether you have Lyme. But, one way is to deliberately produce a Jarisch-Herxheimer reaction, or a “herx.” A “herx” is when you feel sick because you have killed off the Lyme with a particular treatment (like antibiotics) because the dead bugs (mmmmm, yum) and it’s neurotoxins are dumped into your bloodstream.. and you get sick.

Herx reactions vary in severity based on the time of treatment, the cycle of the spirochete, and strength of the antibiotics/treatment and other variables I really don’t have the space to get into. The bottom line is that, if you do a Lyme treatment that kills off the spirochete, you will feel sick. If you do the same treatment and don’t have Lyme, you won’t react. I reacted.

So, how do you treat Lyme?
The answer to this is as personal as the person treating it. Many people go many ways with treatment options. There are those that tend to go with mainstream medicine and get antibiotic regimens and PICC lines and drugs that help with the symptoms. There are also those that choose to go the alternative route, and that gets just as complicated. Generally, no matter what kind of treatment, the goal is focused on one thing: eradicating the rapidly multiplying spirochete that invades every system in their body. There are a lot of opinions on how to do that and I won’t even go into how I found treatment nor what it’s like to find a doctor that will actually treat you. That would take me a long time. Just know that it’s an extremely costly, difficult process.

What am I doing? I am trying to reduce my parasite load with alternative therapies. I have, what I call, weekly “Lyme treatments” that, similar to the function of chemo, makes me feel worse before I feel better. The spirochetes die off from treatments causing those dead “bugs” and the neurotoxins they emit to enter into my bloodstream and create a worsening of symptoms. When the toxins are in my body, I feel really sick. When those toxins exit my body, I feel better. When I regularly detox my body and have regular treatments, I begin to have more good days than bad. The cycle is kill, detox, kill, detox, kill, detox, until you there are no more little bugs and become “non-symptomatic.”

Why not kill all the bugs at once and get it all over with? While this might be possible if you are in the acute phase of this disease, where the body burden from the toxins is not that heavy, doing so in the chronic phase is very risky, and because of the incredible toxic load will either put you in the hospital or even kill you. Not fun. So, you chip away at the bacterial load, do it a bit at a time over periods of months and years (*not* days and months). Eventually, you get ahead of it’s replication, reduce the load, and become non-symptomatic.  At least that’s the hope.

While this really is extremely challenging, God is continually working in my life providing me new options and new healing. When all things are working really well, I have a lot of good days in a row. But, I often experience setbacks and that might mean I have a lot of bad days in a row. But, God is good, He makes a way and He has placed me directly in the path of those who are winning the war on Lyme. There are many suffering who have not been as blessed. Many suffer for years, like my good friend Susan, before they are diagnosed and treated. Many, many die from Lyme. I am very, very lucky to have friends who understand. We lean on each other, we love each other and we help each other.

If you are concerned about symptoms you have or want some information on treating Lyme or other cell-wall deficient diseases, check out Bryan Rosner’s books and they’ll give you lots of information and practical tools for your toolbox.