chronic lyme disease with a taste of nut
That blog entry title? No, that’s meant for me. Thanks. 🙂
I didn’t intend on finding out huge news today. After I heard the initial results, I got choked up because it became very real. I have chronic lyme. Granted, few people test positive even via the best laboratories (see why here) and I was no different. But it seems that “band 31” was a positive which, according to my LLMD, is positive enough. Chronic lyme, also called Multiple Systemic Infectious Disorder by Richard Horowitz and a name I like, is a disease that affects all parts of the body. My Dr W focused on my gut during today’s phone call. I’d been having severe symptoms this past week and I had besieged his clinic with questions. He called me to answer my questions and, since my results were back and I had my next appointment on the 23rd, he told me some of the results.
So while I have chronic lyme (MSIDS), he wants to treat my gut first. If we were to treat the lyme now, the treatment would damage my body further because my microbiome is in such distress, my gut so damaged. Basically, I’m enrolled in Intro to Crohns if we don’t address my gut issues immediately. Inflammatory Bowel Disease. Additionally, stomach toxins (due to leaky gut) are being reabsorbed into my liver and my gut is severely inflamed.
I’ve mentioned Dr. Richard Horowitz recently and now I direct you to a talk he gave last year where he explains MSIDS. Two particularly interesting points are at 2:50 where he talks about inflammation and 6:30 where he talks about IBD. I find that if you don’t know the medical lingo you can still follow along. I do know half of the medical lingo so I was able to easily follow along. It’s worth it, in my opinion, just to have a better understanding.
It is now three days later and my gut has been yelling at me nonstop. I’ve developed a fever, a variety of bathroom problems I won’t go into, chills, abdominal pain, shoulder/neck/back stiffness, lots of fun stuff. I’m waiting to hear from Dr W on whether he thinks I ought to go into urgent care. Since that phone call, Dr. W recommended a supplement and a prebiotic (did she say probiotic? No, I already take one of those. I said prebiotic. Read about it here). I’m unsure what is causing these new symptoms as they started when I began the new supplements and prebiotic (as well as increasing my fiber, via flax seeds and chia seeds and other things). Years ago I started going to the ER for severe abdominal pain and they’d just send me home with a big bill and no diagnosis. While I don’t want to go through that again, I also don’t want to be ignoring something else that could be going on such as an appendicitis, an infection, or something gall bladder-related.
80% of our immune system lives in our gut, our microbiome. Did you know that? And if your gut isn’t up to snuff, your whole body begins getting wonky. I’ve noticed my brain is very much affected by my gut health. Brain fog and disassociation increase exponentially during a gut flare-up and when I notice I’m more regular in habits and food, I notice myself feeling more clear-headed and less emotionally “messy” (insert lyme co-infection rage here).
Something funny that I will add is that I seem to be obsessive about multi-tasking yet completely unable to do it. For instance, I’ve been trying to work on this blog entry for days now. I sat down at the kitchen table to type. I then turned on some classical music. Then I remembered I needed to pre-make some meals for the upcoming days so I looked up some ketogenic recipes. I needed to find a way to make tuna interesting. The one I found involved eggs. So I then researched egg allergies because I think I might have one, though I’m not sure. Then I bounced back between the egg allergy web site and the recipe web site. It called for mayo. I knew I can’t have mayo because of the dairy factor. I remembered this blog entry so clicked over and typed a little. Then I thought, hey, I can make my own mayo! So I looked up how to make my own mayo. It involved eggs. I did more research. Then I made the mayo. It didn’t come out right, though I kept looking at the directions as I paced back and forth in my kitchen, thinking about how much my stomach hurt, how I had to finish this blog entry, how I had to prepare meals for tomorrow, and how I had that DVD from the library about Ireland yet to watch.
You wonder why “fatigue” is so prevalent? 🙂
But that is actually what just happened. I’m now looking at a sink full of dishes to wash, eggs soaking in freezing water that need to be put away (who knows if I’m allergic or not) and I just remembered that I need to be drinking more water than I am.
My head and body feel all buzzy like I can’t keep still. I’ve never been someone with an attention problem, but lately I can listen to you talk for about 1.75 minutes before I get antsy. It’s embarrassing because I am someone who values good conversation. I bug my husband to give me good eye contact so I know he is listening!
On my Facebook page, when I posted the results of that phone call, I ended the post by saying I would explain in my blog entry why in tarnation am I so open about all this stuff? Won’t people think I’m sharing too much? Oh my goodness, especially if the GI issues increase, do I really want to be talking about that stuff? Won’t people judge me and find me selfish or wallowing or self-absorbed? Eee gads, will they think I don’t have enough faith?
Guess what? At this point, I don’t care if others judge me. I know Who is for me and what path to walk, one step in front of the other, in as much obedience as my human nature will allow. My medical journey has been full of shame and hiding and shirking away from speaking up for myself and on behalf of my medical needs. I will not be quiet anymore. I don’t want to look down and smile politely and say I am fine when I am not.
However, I will not go around with a loud obnoxious sign reading VICTIM because that isn’t what I am. First and foremost, I am a child of God and that is the identity I hold onto with as much permanence as superglue.
But I’ve always been an open and honest person and I also believe that knowledge, education, and advocacy are important. If I’ve learned one thing about my medical journey, which started out with “invisible illnesses” like IBS, Fibromylagia, Chronic Fatigue Syndrome, Reynauds Phenomenon, and now has progressed to chronic Lyme/MSIDS, autoimmune diseases like Hashimotos, including [possible] Crohns, co-infections, adrenal insufficiency, metal toxicity, and more, it is that the general public (actually, most of the world) does not understand, much less know, about these conditions. They are prevalent in more people than you realize. It is thought that having Fibromyalgia or Lupus can be under the wider umbrella of MSIDS and we are at the very tippy top point of that iceberg with much still submerged.
Education is a must. Awareness is a must. Personal stories are a must because everyone is different. Research must be funded so that help can be given.
Awareness starts the ball rolling and I hope I roll that ball down your court.
Those tiny ticks are not thought to be that dangerous – I mean parents pluck them off their kids all the time after a nice summer’s day outside, right? But an untold amount of people were bitten with no symptoms at the time. No one wants to talk about this because they think it’s overreacting. If I am super vigilant about my kids going outdoors, I am seen as a helicopter parent. I have two children with behavioral disorders. Yes, it runs in the family, but my oh my they have some of the same physical problems as I do – gut-wise, psychologically-speaking as well. I am not their biological mother (btw, Lyme is said to be passed to the placenta in utero) but I do see many psychiatric conditions in them as well as physical that really make me wonder. Am I just paranoid or am I looking out for their best interests?
Society will always be divided on that until doctors are educated about chronic lyme and then allowed to treat under the ILADS guidelines. To learn the basic facts of lyme disease.
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Why do I share so openly? Because so little is known. Because I went years being told that I was “fine” when I was not. Because chronic lyme/MSIDS is being pushed under the rug by insurance companies and the CDC whose members have way too much interest in seeing this disease minimized and not acknowledged. Because I was curled up in my bed for years, begging for someone to hear me, some relief, and I’ve finally found someone to help, respect me, and listen – and believe! The fast answer is my LLMD, the more detailed answer is God. And because I think my story, told truthfully, can be a testimony to my faith in God – because when it’s all said and done, there is nothing to worry about, panic over, or fear.
I may fear, panic and worry anyway, but God understands that. He is here to comfort me and to reassure me and to also ask that I trust in Him, that I obey Him. For
You, dear children, are from God…the one who is in you is greater than the one who is in the world.
– 1 John 4:4 (NIV)
So although spirochetes might be burrowing around my body, my “gut flora” (don’t you love that word?) is imbalanced, and those funky-looking intestines just aren’t contracting the way they should be, I have the Spirit of God in me and greater is He in me than he who is in the world (man in general or even illness, any “thing” that is not of God). I’ll expound on that verse at a later time, but it’s one that just came to me. I am more than illness. I am made in His image. I am made to be loving, forgiving, yet bold and forthcoming.
So I share my story with you in hopes that you will research the best methods of removing ticks when you find them and symptoms to watch for when no tick or rash are found and you or someone you love is getting sicker and sicker.
Chronic lyme/MSIDS can be prevented.
But we need a lot of bold, daring people to stand up and share their stories. To educate, to advocate, to help others to do the same.
Thank you for reading this loquacious blog entry. I welcome good thoughts and prayers for I see Dr W on the 23rd of July, a week from tomorrow. I am hoping I don’t need to be seen by urgent care before then.
Off I go to finish that mayo now…. wait… what’s that smell….Oh shoot…
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