Woman in store asks me if I'm pregnant and I say I'm just bloated

As The Stomach Turns: My Lyme Treatment Update

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by Vicki

Note: This post has a TMI Warning.

So, I’ve been treating for Lyme for almost 11 months, but I haven’t posted much about my treatment because I was slowly improving, not having horrific side effects, and I didn’t want to jinx things. In my experience, the minute I say, “Well, I’m happy (random thing) never happened,” then (random thing) happens.” Case in point: A few years ago, when I was at my sickest, I was trying to do this “gratitudes” exercise. At that point I didn’t know what was wrong with me, and one of my “gratitudes” was “at least I don’t have Lyme disease.” You can see how that turned out.

But treatment-wise, all was going well until my LLMD switched one of my oral antibiotics and added some supplements, and my digestive system staged the Great Gastrointestinal Rebellion of 2014.

I worry that I will be trapped in a bathroom forever, and my last sight onnearth will be a toilet paper roll

Even my own toilet hated me.

Toilet tells me, "I'm really sick of dealing with your shit"

I had to temporarily stop my antibiotics and supplements and take aloe gel, which was OK, and l-glutamine, which worked pretty well. And my doctor quadrupled my dose of saccharomyces boulardii, a probiotic that helps prevent antibiotic-associated stomach disasters as well as candida. I’m now taking so many probiotics that, if I were not taking antibiotics, the probiotics could probably build their own city in my gut.

What a probioitc city might look like: acidophilus apartments, bifido building, saccharomyces stadium

The problem with taking a ton of things (which many spoonies will relate to) is that you have no idea what did you in. Was it the switch to cefuroxime, the supposedly easily tolerated antibiotic, from doxycycline, which many say is a stomach-destroyer but which I handle just fine (my body is always backwards)? Was it the different form of magnesium, magnesium glycinate, which is supposed to be easier on the stomach? Was it the serrapeptase, enzymes produced by silkworms, for the biofilm form of Lyme?

For non-Lyme afflicted readers: The biofilm form is when the bacteria become embedded in a nasty slime matrix that protects them from the medicines you’re taking to kill them. You want to break biofilms open and keep them from forming in the first place. (“Nasty slime matrix” sounds very scientific, doesn’t it?)

I now take boluoke, or lumbrokinase, which is a collection of enzymes made from earthworms, for biofilms. It’s supposed to be stronger than serrapeptase. The whole business of it being derived from earthworms is a bit unfortunate, as I had a pathological fear of all things creepy-crawly long before my life was ruined by a tick. We’re on the first floor and get centipedes from the yard, and God, do I scream.

I see a centipede, scream, and ask why it needs to have so many disgusting legs. It's not running a marathon, right?

J and I call centipedes “horrible brushes,” because they resemble brushes and they’re, well, horrible-looking. I’m sure they have a valuable function in nature and I should pick them up and gently place them outside. This has never happened. I squish all bugs. Maybe the tick bit me as part of a collective insect revenge plot.

There were several positive Lyme-related developments.

1) I joined the Chronic Diseases Book Group, which I wrote about here. I want to learn as much as possible.

2) My mother finally believes in chronic Lyme.

Mother claims I got Lyme because I petted dogs against her wishes

OK, there is that blame thing, but it’s definitely a big deal for a dysfunctional family. Social Security believed I was disabled before my father did.

3) A dear friend has severe, progressive multiple sclerosis, none of the medications were helping, and she uses a wheelchair. Since Lyme can mimic MS, I asked her if she would consider getting an IGeneX test (the most accurate test). Her neurologist told her that this was a ridiculous idea and that there was no way she could possibly have Lyme. He practically laughed in her face, even though New York is one of the most Lyme-endemic states in the country and she had been camping many times. Long story short … you know what I’m going to say, right? She tested positive for Lyme and one coinfection. She is now seeing an LLMD.

4) I went to the New York Times Lyme protest in September, which was meant to protest the lack of media coverage of Lyme.

Picture of New York Times Lyme protest
I didn’t take this picture. Someone who is actually a good photographer took this picture.

I was lucky enough to meet some great activists. And they kindly stood still while I struggled to get a decent shot.

Lyme activists
I did take this picture! See below for info.

Far left: David Skidmore, creator of the amazing Lyme Loonies cartoon series and my favorite chronic illness cartoonist. (The series name is a satirical spin on something a retiring CDC official said about Lyme patients.) You can also find Lyme Loonies on Facebook and Twitter.
Second from left: Jenny Rush, who created Lymethriving.com. Lyme Thriving is a support organization that provides conference calls and retreats to help patients deal with the emotional and spiritual stuggles that come with chronic illness. Some of the calls also have medical themes, such as regaining gut health. Here’s the Facebook and Twitter info.
Near right: Karen Mascuch Ravitz, a Lyme activist and patient advocate
Far right: Carl Nelke, a Lyme-literate, ILADS-trained therapist (LCSW). Here’s his Facebook info.

Last year there was no way I could have taken public transportation to and from a protest, stood for almost two hours, and felt energetic enough to meet new people. I have to remind myself of these things when I feel I haven’t made progress.

OK, if you made it through all that, please enjoy this video made by Tori Piskin, one of my favorite chronic illness comedians. In the video she entertainingly demonstrates why it is a bad idea to do your IV Lyme treatment in NYC’s Grand Central Station. She has a great YouTube series called Sorry, Having a Lyme Day.

That title kind of sums things up for me.

Published by

Vicki

Hi! I'm Vicki. My blog is called "Miss Diagnoses" because I have too many diagnoses and because my Lyme disease was misdiagnosed for many years. In addition to being a professional patient, I'm a compulsive reader and doodler. Sadly, my writing and drawing are limited by repetitive strain injury and neuropathy. I use assistive technology, but I can't post as often as I'd like. You can also find me on Facebook, Twitter, Pinterest, Instagram, and I have two short cartoon videos on YouTube. Twitter and Instagram: @miss_diagnoses Facebook, Pinterest, YouTube: @MissDiagnoses

40 thoughts on “As The Stomach Turns: My Lyme Treatment Update”

  1. I know someone with MS and as soon as I researched Lyme I told them to get tested. You never know! They haven’t done it yet but I’m so hopeful they do, atleast it can be treated!

    Liked by 2 people

    1. Yeah, it was a big deal because her neurologist was very against IGeneX, and she had to get her primary care doc to run it (he was cool about it). Then she found an LLMD who actually takes insurance! I am really hopeful. I think it’s going to take a long time to see results because her symptoms are pretty bad. I really hope your friend gets tested … I wonder how many MS patients really have Lyme.

      Liked by 2 people

      1. Yeah, same with ALS and alzheimers. So many things that could actually be cured and you just wouldnt know. Yeah thats the thing, to get to that stage it would be such a big treatment. Its something though, I’d be interested on updates for your friend about treatment!

        Liked by 1 person

      2. I’ll definitely update. As for ALS, I made the mistake of mentioning Lyme and ALS on Facebook in reply to someone’s request for info, only to have the person get very rude and dismissive because I mentioned Lyme. Ugh, someday people will realize! I hope, anyway!

        Liked by 1 person

      3. I have Lyme, chronic now, while formally diagnosed with PPMS (A-typical). It is a long battle before the medical world accepts other options. I like your post, Miss Diagnoses. From Jan, a Dutchman living in South Africa.

        Liked by 1 person

  2. Progress is good! Even when slow… I have to keep reminding myself of this too.
    Reminds me of that quote from a meditator: “come on inner peace, I haven’t got all day”

    BTW, I was trying to sign the petition, but they won’t accept my Postal Code :/

    Liked by 1 person

  3. THE BEST! I love that even though you’ve been to hell and back, your sense of humor is still fully intact.

    I am so glad you feel like there’s some progress in the last 11 months! Having that window of hope is such a powerful thing.

    Liked by 1 person

  4. Wow! This is great!! And you have become serious with the drawing end of things, love the style, content and the many laughs! Well, this should keep you busy, Lord knows there is plenty of material when it comes to Lyme and all the goodies that come with it! Really great job and look forward to seeing your next idea!, You’re Lyme buddy, Dave.

    Liked by 2 people

    1. Aww, thanks for commenting! I could not wish for a better Lyme buddy than you! I wrote that you’re my favorite chronic illness cartoonist but I think you’re my favorite cartoonist, period! Yes, aargh, there is plenty of material with this and the other ailments! Too much material maybe! :-/

      Like

  6. S. Boulardii made me loads worse because I’m yeast intolerant, due to leaky gut, due to candida…. my gut got so bad I literally couldn’t eat.

    It took a truck load of anti fungals and the low fodmap diet to sort it out, now I can pretty much eat whatever I like with the exception of fresh cow juice, which isn’t that bad really. If you’re getting GI issues, definitely up the anti fungals and look into the fodmaps diet. I wish I had done it a year earlier…and skipped the misery! I was just told ‘take more pro biotics’ which was about as much help as an umbrella in a desert.

    Liked by 2 people

    1. It’s much better than it was when this all happened. I have been on Nystatin the whole time (since starting treatment) and I don’t seem to be having major candida issues (that I can see). Thanks for the FODMAPs info—I just looked that up and realized it’s all my favorite fruits and veg, which I eat all the time—cauliflower, Brussels sprouts, asparagus, apples. Oh man! The diet thing is making me a bit crazy as I cut out a lot of histamine foods and then there’s the Autoimmune Paleo thing. Sorry that you went through not being able to eat anything but very happy you can handle a lot of foods now. You are giving my gut hope. LOL at “cow juice”… well, that’s what it is, really.

      Liked by 1 person

  7. A box of tissues later I can finally see well enough to comment! 😂
    A change in brands of betaine hcl and my toilet is telling me the same thing. 😩
    Here in the South it seems insects are more numerous and larger than in the Northeast. For the record I’m from NJ. Never before have I seen such a big centipede, roach, spider, fly, wasp, bee, skeeter, etc… 🐛🐝🐜
    Thank you for another well written, illustrated, informative and entertaining blog. 😃

    Liked by 1 person

    1. Aww, thank you, and I am very sorry your toilet also feels the need to comment! I hope the reaction goes away! I didn’t know you were from NJ. I was in Florida for a while. Between the heat and the bugs I hated it! The typical NY/NJ roach is NOTHING compared to a palmetto bug. True, every insect is supersized in the South! I don’t know what a skeeter is, but if I Google it I might not sleep. The only bugs I tolerate are your emojis. 🙂

      Like

  8. First of all, I totally thought I was the only person absolutely terrified/repulsed by centipedes! Always nice to know you’re not alone. 🙂 Second, God bless probiotics! I think there needs to be a comic strip with the heroic S.Boulardi battling the evil villainous C-Diff.
    And thanks for Tori’s video at the end. I hadn’t seen it before and it totally made my night. Hysterical!

    Liked by 2 people

    1. LOL, you are DEFINITELY not the only person repulsed by centipedes (and silverfish, ants, and obviously ticks). Yes, that would be a good comic strip! Glad you liked the video! I love her videos … she has a few more on the channel I posted below.

      Like

  9. Haha, a skeeter is a mosquito. There’s a baseball team in Texas called the Skeeters. Down there mosquitos are as big as birds, so they say. Ugh.
    Thank you for bringing humor to our lives with chronic illness. Really helps to have a good laugh about it! Ordering some other betaine hcl today, yeah.

    Liked by 1 person

  10. Epic fabulous post! Whenever you have been in the bathroom too long and are frustrated, go read your positive Lyme-related developments list. You really have a come long way in a short time. Well, you know, short spoonie time. BTW, I showed my 10yr old daughter, who has been fighting an intestinal parasite for two years and has a close personal relationship with her toilet because of it, your drawings and she laughed really hard. Thanks for sharing!

    Liked by 2 people

  11. Thanks! LOL, I will. Oh, your poor daughter! I have a parasite too, but I’ve been taking something for it and I don’t know if it’s still there or not (I have to get another CDSA test). Well, I’m glad I could give your daughter a laugh! 🙂

    Like

  15. Aww, thank you! Yeah, I think I’m getting better at shading as I get used to Sketchpad Pro. It’s really awkward to draw fine lines, say for facial profiles. There’s probably a way to make it easier but I haven’t figured it out yet. I just learned how to use the layers though. It has layers like Photoshop, which is how I copied my mother’s head. Still trying to figure out how to make a solid colored background … aaargh! Your artwork is beautiful though! Anyone reading this comment, please check out Sarah’s work at Anglo-Saxon Celt Creates! 🙂

    Like

  17. Thanks and I’m glad you’re not dealing with this stuff nowadays. I’m hoping for a light at the end of this Lyme Tunnel here. Just checked out your blog and love it—both the topics and the design!

    Like

  18. I absolutely loved and needed to read this this morning! Flipping hilarious! Great luck with the stomach nasties. My dr has me on a combination of about 200 billion probiotics. But I’ll tell you the IVs have been loads better on the gut. I’ll go back on the pills in a few more months but having a year off and only taking Mepron and arteminison and those crazy ahem “herbal” drops is still loads better. I’ve had five children and my tummy often looked like I was having twins 6&7. Ugh.
    I did think the same thing about my morning teaching math(whoohoo I can mostly stand and teach again) thinking if I die today is this how I want to go with 14 year olds pissed at me because they had to pick up a pencil? Thankfully that moment passed and I just busted up laughing cause that’s why I teach right now to keep me anchored to humanity (and maybe teach a little with all my neuro wiggles). Ps: the triple roll is the way to go on those days, except when the septic tank rejects them. Ick. Happy day! Thanks for the lift!!!

    Liked by 1 person

    1. Awww, thanks! I’m so glad you are able to teach again, even if it is with a bunch of 14-year-olds who resist picking up a pencil! Aargh! I haven’t done IV yet because I would probably be allergic to the PICC line. I have allergic contact dermatitis. LOL about the triple roll!

      Like

  20. I had to laugh at the first cartoon. I’ve had pregnancy mimicking bloat for over a year, now. My entire GI system was really messed up even before I started treatment, so even though the antibiotics have wreaked their own kind of havoc, at least my gut has improved over time as the Lyme and Bart have been killed off. Oh, yeah, and the Babesia, too.

    I also had to laugh at the toilet and bathroom cartoons. I have been through almost every variation of bowel movements known to mankind at one point or another in the last 3+ years, with the exception of constipation. Currently, my IV Cipro makes it resemble a chemical waste dump. It’s truly an assault on the senses.

    If you’re already having some intestinal trouble, whatever you do, don’t take large doses of resveratrol. It just adds insult to injury. And hang in there! Improvement does not come in a straight line. Just because something new or weird comes up doesn’t mean you won’t get better.

    P.S. Xymogen IgG 2000 DF was rather soothing for me. I recommend it, after consulting with a good integrative doc first.

    Liked by 1 person

    1. Thanks for the compliments and encouragement and glad your gut has improved! OK, no resveratrol, will remember that! How are you doing with the IV Cipro? My friend just had a tendon injury while taking Levaquin. She didn’t do anything athletic, just walked around her house and went to the doctor. I will definitely look up the Xymogen supplement you mentioned. I think I should buy Xymogen stock at this point. 🙂

      Like

  21. What a fantastic, uplifting (hilarious actually) post (is that what you call it?)! Thank you for expressing your frustration, journey, experience…with such balanced humor and candor. You give full credence to the seriousness without being overly dark and serious, this is the sort of account people will continue reading and that in turn will get the word out for both diagnosed, un-diagnosed lymies as well as non lymies. Thank you!

    Liked by 1 person

  22. What a great post! I loved your cartoons and I have followed Tori’s videos for a long time too. We need humor to get through the trials of fighting this disease. I have suffered the same GI issues that you are going through and some of my “toilet trials” happened while on IV therapy! I encourage you to stay afraid of the PICC line as those were some of the worst days of my life. I would continue taking my 40+ pills a day anytime over going through that again. I will never do a PICC line again, I can tell you that. Just wanted to thank you for giving me a chuckle with your witty post. I will continue to follow you.

    Liked by 1 person

    1. Thank you so much, and I’m very glad I could give you a laugh! Yeah, Tori’s videos are great, aren’t they? I was depressed the other night and I watched one. That’s wild that the PICC gave you gut issues! I thought it was supposed to have less impact on the gut. What do I know, I’m less than a year into treatment after being misdiagnosed since 2009. Anyway, now I have another reason to avoid PICC besides my allergies! Also, I think I would have to go to my doctor’s office every day and get IV there in order to do it. Pills are way easier, even with the crazy scheduling (this one an hour before food, this one with food, this one two hours after food, yada yada yada). 🙂

      Like

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