Last May, I was on my way off treatment for Lyme Disease and Co-infections. I was also practicing yoga again. By fall things went downhill. By December I couldn't get out of bed. Four years after starting treatment it’s the same thing but different pill jars. Finding new pill containers is my idea of indulging. Typical pill boxes can’t hold all my meds for a single day. For a while, I used empty spice jars which work fantastically. When I found these cute color-coded lid jars and well, I just couldn't resist. To a Lymie, a new pill box is like buying this season's designer purse, but cheaper.
I haven't been able to talk or write much about this last relapse as it's been so disheartening. I'm back on heavy meds and herbs for Babesia and I added back a daily shot of Rocephin in the butt. Mr. Wild Dingo used to give me the shots. Then he complained that pushing the syringe hurt his wee little thumb. Apparently, Lyme disease hurts him more than it hurts me! Sigh. So now I do my own shots. It doesn't hurt but because Rocephin bruises the butt faster and more than bicillin, over time it leaves little room for adding another shot the next day. So it's a challenge to get a shot in after 2 weeks of doing it.
Having Lyme feels like a long slow torture to the grave. I watch the world go by on Social Media and the most I can do is find adventures in my garden and walk my dogs. Frustrating for a once active athlete and social butterfly. But it's something and certainly more than what many Lymies can do. In this limited lifestyle, I’m grateful.
I will say this: my herxheimer reactions to the meds and die off are much less severe. I have some really good days. I have some days I'm sofa bound. So I do believe I'm progressing. I do not have joint pain anymore. I don't need to pee every 20 minutes or 8 times per night because Lyme and co-infections are no longer in my kidneys. I can write and dog walk. I can go out to dinner now and then on good days, but it usually takes a lot of effort on my part and Mr. Wild Dingo's part. We had company a couple weeks ago and I made huge dinner, and worked 5 hours in the kitchen. To do that, he had to walk the dogs for me and do some other chores to help me be able to host. I also did no meds that day just so I could appear normal. So yes, being normal takes a lot of effort. But at least I get to do that. My main issues today are Babesia-related: muscle weakness, POTS, losing consciousness when I stand up, breathing difficulty (I can sound like I ran a marathon just climbing the stairs or after 20 minutes of gardening), and of course, brain pain, migraines and various types of headaches. Still, everything is much less severe so it's progress for me. Slow but forward.
In my personal life, Lyme is becoming an epidemic just in my small circle of friends. I get a regular influx of emails and FB messages from friends I haven't seen in years (thanks to Lyme) telling me they've been diagnosed and need advice. The truth is, it is an epidemic world wide. Here's a fantastic article written by a Lymie who will be addressing some important questions surround the disease. He's writing every day about the Lyme disease epidemic. Check out his articles. They are fantastic!
My question (not mentioned in this article) that I need people to think about is this: The IDSA and CDC both claim that Lyme disease is hard to catch, easy to diagnose, easy to cure. But if that's true, why are they in such a rush to produce a vaccine? Seriously, ask yourselves that question. There are some early medical publications in 1980's produce by the same scientists who make that very claim today, that conclude that if this disease goes untreated, it can lead to chronic illness AND neuroborreliosis. Later on, those same scientists changed their tune when laws were passed to allow corporations to patent pathogen DNA for future vaccine development. This led to scientists hording knowledge rather than sharing all in the name of a making a buck and thus leading our country into an informal type of Tuskegee experiment. (Click the link and prepared to be horrified by what our government is capable of. The author addresses this in one of his many articles this month.) In other words, they kept the definition of what Lyme disease is to a positive ELISA test (which has a 50% false negative) AND a known bulls eye rash (not necessarily shown in most Lyme cases). This allowed hundreds of thousands of people to go undiagnosed for years allowing the disease to progress and people to become disabled. The CDC does NOT have the public's back when it comes to health care.
So, what can you do to help?
- Spread awareness: share any news stories about the illness. Share posts about how to recognize symptoms early on so you or your friends don't end up permanently disabled from something that should be treated immediately.
- Make a tax-deductible donation to charity that supports chronic Lyme disease such as ILADS who is leading the charge in helping patients recover most or all of their lives, LymeLight Foundation, which gives grants to children of families who cannot afford treatment (because insurance won't cover it), Lymedisease.org, Global Lyme Alliance or NatCapLyme. They are all excellent foundations for tax deductible donations.
- Take part of the Lyme Disease Challenge I'll be doing the challenge later this month but you can get started too. Take a lime bite, take a photo of your best lime bite sour puss face and post it on social media with a fact and tag a friend to do the challenge.
Here's what's NOT helpful:
- Treatment solutions if you have no experience in Lyme disease or you are not a doctor, a nurse, a scientist. More often times than not, I will at least look up your reference but most of the time, it has no bearing on my illness nor a possibility of working.
- Denying to my face or on social media that Lyme disease does not exist.
- Telling me "at least it's not cancer." Believe me, and I say this because a leading oncologist, Neil Spectar has also said that Lyme is the equivelent of cancer as he had to have a heart transplant himself from undiagnosed Lyme disease that caused him Lyme carditis. He's one of the few survivors of Lyme carditis--when Lyme infects the heart. I will also say, in my opinion, I sometimes wish it were cancer. I'd either have treatment and recover or die. Either way, I'm out of this miserable way to live. It may be hard for you to read, but I have no doubt many Lymies feel this way. Lyme never quits. At least with cancer, there's some way out.
- Doing nothing.
This is a stupid, stupid illness that does not need to happen to 300,000 NEWLY infected people every year. In the next decade, you have a 1/300 chance of getting Lyme disease. I'm just sayin'. Don't say I didn't tell you.
Thanks Internet. Now go do your challenge or donate to a foundation!
Great post! Our lyme+ (18 months) neighbor (lyme, babesia, bartonella) in our lyme infested neighborhood in mid-Coastal Maine has already posted this on Facebook for the local lyme support group members.
On "what can I do to help" - I spend much of my time on #1 and had not thought about #2 (donations) which I will now do as you suggest.
On awareness, I think it is important to stress that it is not "just" lyme, but typically (at least around here) lyme plus up to several confections - or sometimes just co-infections without lyme. My wife was retested (Igenex) in December which showed her babesia was back (sigh) after looking clean a year ago and she had evidence of eight distinct tick-bourne infections (lyme plus seven) in her now 4.5 year struggle - an office record for her very experienced lyme ND..
While awareness of lyme has greatly increased here over the past few years, almost no one I encounter has heard of babesia or any of the other co-infections found locally. WD clearly still have a lot of work to do..
ON cancer, our family ND (also very experienced with lyme+ and part of my wife's "team") told me recently that she feels a cancer diagnosis is easier for her patients than lyme, as everything is pretty much straightforward - treatment process and timing, results, etc.