On Thursday morning, I woke up and immediately knew something was very wrong. My whole body ached. I had an awful headache. I was dizzy. I was too nauseous to even think about food or water. It was that familiar set of symptoms that meant one thing: I was in for a terrible Lyme herx.
The last two weeks of symptoms flashed in my mind… The severe anxiety that gave me a panic attack over leaving the house. The lack of concentration and mental energy that meant falling behind in school. The incessant partial seizures that made me nervous every time I stood up to walk. I hadn’t even been in such bad shape when I started being treated for Lyme in December.
What are these doctors doing to me? Why am I putting up with this? I realized that morning that my treatments were only making me sicker.
As I eventually got to the kitchen, I sat there and stared down my antibiotics—the perpetrators of these all-too-frequent Herxheimer reactions that seem to be slowly ruining my life.
I can’t do this anymore…
I stopped my Lyme protocol for several days, because the thought of getting any worse than I already was seemed unbearable. Last semester, my quality of life, even if I still had PANS flares, had been much better. I’ve missed so many days of class this semester, thanks to herxes that leave me too weak and sick to get out of bed. I thought if I took a break from my protocol, maybe life could go back to how it was before.
But unfortunately, my strong reactions to the treatments show that they’re killing off a lot of bacteria—in other words, my misery is proof that I need to keep going. And last summer, Lyme disease attacked my heart and nervous system, and there are still spirochetes in my brain—who knows what they could do to me over time?
I can’t quit. Whether I like it or not, this disease is trying to take my life, and if I want to live, I have to fight back.
After a couple of days of lying around the house and feeling terrible from the herx, plus a lot of kicking and screaming, I finally accepted this battle I’ve been given. I shed more than a few tears, finally realizing that I may have another year or more of Lyme treatment before I’m cured. I felt anger and rage that I’m spending my twenties in a health crisis—after already having PANS for a decade. But I’m channeling that anger into a will to fight to get better.
I almost quit treatment because I was tired of feeling worse. I kept going because I wanted to live.
I never had herxes–just worsening gut problems from all the antibiotics. My gut is SLOOOOOWLY recovering now that I’ve been off them for years, but still certainly not “normal”.
Interesting. What did you do to recover from the antibiotics? My guts are not too happy with me, either.
Well, right after I stopped my Lyme antibiotics I got better for a short time, but then got worse again. Various things helped a bit–probiotics, antifungals, oral vancomycin, etc. but nothing made a huge difference.
Then I went on antibiotics for Bartonella, and within a week of stopping those I got C. diff. It kept coming back even though I stayed off antibiotics, so finally my gastroenterologist did a FMT. The results were incredible–not only did diarrhea that had been around for well over 5 years suddenly go away, my mood was back to pre-Lyme for the first time since Lyme.
Unfortunately it only lasted a month–I at least partly blame a bit of weed I smoked after that month, but it’s impossible to say with certainty that was the reason. I’ve heard of others who regressed for various reasons. But my symptoms came back as fast as they had gone away. Unfortunately I couldn’t have a second FMT because I didn’t test positive for C. diff even though I had bad diarrhea again.
Later I did several SIBO treatments with rifaximin. Back when I originally went off Lyme antibiotics, I had tried SIBO treatment and it did nothing. Therefore I was very surprised that post-FMT it made a big difference, though nowhere near as big as FMT did. I’ve found I can only do one SIBO treatment about once a year–if I do them closer together my symptoms show resistance, in fact I actually feel worse on treatment.
I’ve also really looked into food sensitivities. I seem to be really sensitive to oils and oily things (nuts, some fish). When I went away to go back to grad school, I was able to cook only the things I wanted to, when I wanted, and was able to find a precarious balance that works. Unfortunately it’s unstable, and things happen–like the last two weeks a certain kind of fish that used to be the only one that DIDN’T cause me problems now seems to be causing me problems. And even before that, it didn’t even just depend on the species of fish, but also on the store where I bought it. I really wish I could get to the bottom of why this is happening.
I’ve always had a hunch that there is something off about the gut bacteria in people with PANS. Why else do long-term prophylactic antibiotics seem to be tolerated by a lot of people? And there’s been a lot of research coming out that shows how gut bacteria can influence mood and behavior. Very interesting that you experienced that with a FMT. I hope as this becomes more well understood, it can lead to better treatments for PANS.
The antibiotic cocktails they use for Lyme are pretty hard on the guts I think. I reacted horribly to Bartonella treatment, too (it seemed to rapidly accelerate this whole latest PANS relapse), but thankfully I stopped before it could do too much damage to my guts. I’m sorry you’ve had so many issues related to antibiotics.
Have you ever heard of the Paleo Autoimmune Protocol? No grains of any kind, no dairy, no soy, no legumes (including peanuts), no nightshades (white potatoes, tomatoes, peppers, eggplants), no caffeine, and no food additives or anything processed. It’s hard to get used to, but it’s only meant to be an elimination diet for a limited amount of time until you figure out what foods you can and can’t tolerate. I started it a few weeks ago. I think it’s helped with my joint pain and perhaps some other Lyme symptoms, but I can’t tell about the autoimmune PANS problems yet.
Keep going! Those herxes were honestly some of the toughest times I’ve ever experienced. But now I’m finally in remission, and all those rough days were worth it. There is a light at the end of the tunnel, even if you can’t see it yet.. I promise! x
Thanks for the encouragement! So glad to hear you’re in remission. Sometimes it seems like no one ever gets better, so it’s reassuring to be reminded that it is possible. 🙂
Stay strong! Herx reactions are terrible and I understand the fear of continuing treatment 🙁 I will be keeping you in my thoughts and prayers!
Thanks so much! I’ll be praying for you, too. We’ve got this!
No offense to Melanie, but be careful with epsom salt baths. They work for a lot of people but gave me (more) seizures. Perhaps because of a detoxing problem, though. Just warning you.
With Lyme Herxes I have been there and done that. Not your same symptoms, but about bad herxes I TOTALLY GET IT. Keep going, girl! Fight fight fight!
Praying for you!
Good for you to have the will to live. Yesterday I didn’t even have that (hospital for a week and 24/7 pain can be depressing).
Since I’m at Johns Hopkins I can’t check my email. If you need to contact me, Iris, shoot me a Google Hangouts message and I will get back to you ASAP. Just create a new conversation with my email address.
Hi Heather, it’s so good to hear from you! I’ve been thinking about and praying for you. I’m so sorry to hear you’ve been in the hospital. Hang in there! I’m sending you a Google Hangouts message.
Thanks for the warning about Espom salt baths. I didn’t realize they could have effects like that in some people.
Hey Heather and The Dreaming Panda (I am not sure what your name is). Heather, you may know me from your blog but I just wanted to tell both of you that you are both so amazing and stay strong. I need to do the same I guess (I have LD also). Anyway stay strong!
Hi Charlotte, thanks so much for the prayers and encouragement. It means a lot to know there are pople out there who care. I wish you all the best in your fight against Lyme, too. We can get through this!
Praying for both of you!
I’m so sorry this is happening to you. I think you’re amazing and I will keep you in my thoughts…….you will get through this……..I hope things take a turn for the better very soon.
Awh, thanks Janet! 🙂
Sorry to hear this. Has the dr given you anything to help with Herx’s?
Charcoal caps
Alka Seltzer Gold
Epsom salt baths
There’s an entire list you can Google. I’ve heard when herxing, you may have to decrease dosage of antibiotics or hold off on them temporarily.
Herxing puts patients in a terrible position. I hope this gets better for you very soon.
Hi Melanie! Thanks for the suggestions. I’m on all sorts of supplements to help prevent herxes, but I think sometimes there are still too many bacteria for my body too handle. Epsom salt baths, Alka Seltzer Gold, burbur-pinella, and lemon water have been helpful so far, but I’ll have to look into the charcoal caps. Thanks for the advice!