Hey, Everybody!! I’m back with the living!! Thank you for all your prayers, good energy, love and well wishes.
This was my preamble to a blog posting the morning after I thought I had almost died from a drug reaction. OK, if you know me, you know that’s a bit dramatic. But I will say it’s as close to dying as I hope to come anytime soon!
So here’s the sequence of events in my Lyme’s Disease experience, as best I can recall. Some of this is remembered in hindsight and is tainted by my poor memory. But I’m hopeful it might help someone else going through this, especially the end part on the Herxheimer Reaction.
On or about September 28th, I noticed a large red diamond area on my right inner thigh. It appeared to have a bite in the center – I assumed a spider bite – and over a period of a couple days, it turned dark gray or blackish in the center. I was a bit shocked by it and put Lavender essential oil on it. It was a bit itchy and felt a bit like a bruise. But it wasn’t showing lines like I associated with an infection moving through the body. I have this recollection of a story that if the line from an infected area reaches your heart you die. But no lines, so I thought I’d wait to see what happened. It seemed to get a bit worse in color but I had lots going on and the itching lessened and it didn’t look like it was getting too much worse.
I was dealing with LOTS of stuff in life at the time – farm sitting for one friend, helping another farm friend, canning with Connie, friends visiting for the weekend, making corn cob cordial, getting ready for a big trip to Missoula and Colorado. Since the bite seemed not too bad, it was easy to just keep putting oil on it and waiting to see how it progressed.
I also had a couple other weird things at the same time, one that got my attention, one that was background noise. The one that had my attention was a sore left calf. I know that this flared on September 29th because I was canning with Connie that day and asked her for some of her essential oil mix that helps sore muscles. I attributed the soreness to the goat wrangling that we’d been doing the previous couple days. I figured the oil mix would help and tried to forget about it. But the oil didn’t do the trick. The calf kept feeling tender and actually swelled.
The thing that was background noise was that I had several days of headaches. I think I probably attributed them to an oncoming menstrual cycle as I often fight migraines around my cycle, especially when I’m stressed and I was juggling a lot of balls at the time. I used peppermint oil on the back of my neck to fight the headaches and that seemed to work well. I also had two instances where I felt like I was breaking a fever. I had a sweaty face on waking in bed – though I didn’t feel like I had a fever prior to that. This happened for a couple days as I recall in hindsight. I didn’t think too much of it as I had been hanging out with a friend who was sick and I attributed that to my body fighting off and not getting her cold.
Oh, I also had all these little rashy areas, diamond shaped, across my chest and back and buttocks, and on my legs. They were not itchy or painful, just numerous. So all this is happening as I prepare to travel to Missoula and Colorado.
When I arrived in Missoula, I felt fine but I noted that I get very short of breath when I hiked up the hill. After a day I realized, “Oh! I’m at elevation!” We were at about 3400 feet. I felt a chest pressure that seemed like what I thought a mild heart attack might feel like but I didn’t have any other issues except the heart rate and pressure. I knew I was going to the doc in another couple weeks and decided I’d ask him about it then.
By the time we got to our son Tom’s place in Denver, we decided I needed something to fight what was happening. I got some Benedryl and, at Dan’s direction (he’d gotten this advice from a medical professional at some point in the past), I took 2 Benedryl to start the regimen. There was no need to imbibe in the local offerings as the Benedryl definitely made me feel pretty good. Who knew?
Later that evening in Tom’s apartment, I had some wine as we waited for him to get home from work. I took more Benedryl as well. I got pretty loopy and at one point took a green marker and drew around all the red diamond areas on my legs, reportedly “to determine if they are growing or shrinking”. This was October 11th.
We got home October 14th and I was scheduled for a Doctor appointment on the 23rd so I kept an eye on my rash, bite, calf and chest pressure. I continued to take the Benedryl for a few more days and I slept on the couch with my left calf elevated and I noted the calf seemed back to normal after three days. The rashes continued to dissipate. I did notice that the chest pressure was also associating with a racing heart rate on the 19th and 20th – both episodes in the middle of the night. On the 22nd, I had a brief bit of chest pressure without racing heart as I walked into a friends’ home mid-afternoon. I felt fine otherwise. No headache, no fatigue, no achy joints, no fever or chills.
So, the 23rd I visit the Doc for an update on a medication I take and I addressed the other weird things I’d noted since scheduling the appointment a month earlier. He seemed concerned about the bite and decided we needed to check for Lyme’s. He also said we’d schedule a stress test for that Friday the 27th to check out the chest pain. I was less concerned about the blood test as I hadn’t had any Lyme’s symptoms and had not had any bullseye or tick bites to my awareness. I was more concerned about the stress test as I’ve always thought I’d die of a heart attack and assumed we’d find a bunch of clogged arteries to be cleared or monitored. I was dreading the elimination of cheese and ice cream from my diet.
This was an initial visit, it being the first time I’d been to the doctor since moving to the North Woods, and the Doc wanted to confirm my allergies. I told him Gantrisin and Lomotil and that “my Aunt Dee said I was allergic to Sulfa drugs”. Since I didn’t have recollection of any effects from Sulfa, he did not note it in my file as I thought was prudent. Well….. turns out that one I am allergic to (and I imagine had a horrible reaction to as a child fighting bladder infections and Aunt Dee heard all about it) is Gantrisin, a discontinued drug which has generics today and IS A SULFA DRUG. SO… I think we need to denote that I cannot have Sulfa.
Anyhow. I show up at my stress test Friday morning and, when I go to get on the treadmill, the Medical Tech, John, tells me the Doc wants to talk with me. I ask him to get Danny from the waiting room and then he comes in and gives me his cell phone. The Doc explains that I tested positive for Lyme’s and he has called in a prescription for Doxycycline Hyclate. John and the Radiation Tech Todd both provide their feedback on Doxy – one says it’s horrible on the gastrointestinal tract – nausea, stomachache, diarrhea – and the other acts like it’s not that big a deal – he’s been through Lyme’s treatment twice now. Great. I pass my stress test with no indications of any issues – WHOO HOO! – and head to the pharmacy for my Rx.
After taking the first Doxycycline at 1PM, having a baked potato for lunch and heading home, I was wiped out and laid down for a nap. I awoke 2 hours later at 5:15 and felt… not right. I had achy muscles and just didn’t feel normal. So I went to the couch to sit by Dan in the living room and soon I was really chilled. I pulled the blanket over me and tried to get warm. I then spent the next 2 hours convulsing in chills, breathing my hot breath (as I was actually really hot) into the covers to warm me and wondering if I was going to die. At about 6:15, Dan called the Bemidji Walmart (all the local pharmacies had closed) and the Pharmacist said, “That doesn’t sound like an allergic reaction to the drug, it sounds like you picked up a bacteria or virus.” She recommended to keep taking the Doxycycline.
About 7 PM (I think – I was pretty much out of it), Dan called the Bagley Hospital who gave him the Sanford Nurse number and he called and talked with her. I think he was getting pretty scared as he’d been watching me, looking like I was auditioning for the role of “Detox Patient in DTs” – I was just convulsing and shaking and shivering for too long. He had been researching online and read that the drug warnings for Doxycycline said: “Call your doctor at once if you have a serious side effect such as… fever, chills, body aches, flu symptoms, swollen glands, rash or itching, joint pain, or general ill feeling” Yeah, I pretty much had all of that. PLUS, he also read on the “most important information” you should know is that, before you take Doxycycline, you should tell your Doc if you’re “allergic to sulfites”. Uh oh.
The Sanford Nurse said that we needed to get onto another drug immediately if I couldn’t take this one. [Remember this for later.] She also asked what my temperature was. We hadn’t thought to check this but did and it was 99.8, which is high for me as I run about 97 normally. She advised Dan, if my fever hit 104 to take me to the hospital (which I didn’t know until I was finally going to sleep that night and we checked my temp again and it was 102.1).
My chills had dissipated while Dan was on the phone with the nurse. I’d begun doing Reiki on myself as I realized I couldn’t keep up the convulsing… Thankfully I had the sense to try something! I’d done the first symbol on my shoulder about 40 times and all the while could feel the chills ebbing. Then I did the healing symbol a half dozen times and I started feeling warm. Eventually I started feeling really warm – the fever kicking up. By about 9PM I was finally feeling somewhat normal again in most aspects. But I was feeling pretty warm. When he put me to bed, Dan got me a cold cloth for my head since I was still in fever. I planned to get up a couple hours later to check the temp again and be sure I wasn’t rising to 104.
I ended up having to pee about 12:30 and when I checked my temp, I found it was back to 99.7 so I could sleep the rest of the night more peacefully. When I got up to feed Lucky (our cat) about 8 AM I felt like a human again. Checked my temp and I was back to 97.
I knew Monday I’d need to check with the Doc about getting another antibiotic since I couldn’t take this one but with it being the weekend, I just would have to chillax for a couple days. Well, when I called Monday, it got weird. I talked with the Doc’s nurse, Billie, and she said she would talk with him. I told her we were heading to Bemidji so they should call the Rx in there, not Bagley. Well three and a half hours later, we hadn’t heard anything. I called in to the clinic and was told by the receptionist Sheila, “Things are very busy and the doctor is busy but I’m sure they are working on it.” Great. I asked if I was supposed to just hang out in Bemidji all day until they figured it out. I don’t think I’m making friends with her… I decided we’d get our final shopping done and hopefully it would be called in by then. Billie ended up calling me as we were waiting to check out at the store. She explained that the Doc “would not be prescribing another antibiotic”. WHAT THE F&*K?
OK, I should explain that, while I was ambivalent about taking the antibiotic on Friday, I’d since talked with good friend Lee who explained to me that it was crucial to get the antibiotic during this short window of opportunity to fight the Lyme’s. While I may not have had a bad effect, if I left it in my system, I’d be at risk of it rearing up later and causing bigger issues. [I liken it to Chicken Pox and Shingles. You’ve heard those horror stories, right?] She’d convinced me I needed a regimen of antibiotics. And the Doc himself had been pretty adamant that I absolutely needed to take the meds – “at least try a week” he’d urged when I sounded hesitant – and NOW he was basically just saying I wasn’t getting anything different?? Lee had told me there were several antibiotics that could be used and assured me the Doc would prescribe something for me – she said I needed to be on a 30-day treatment plan.
So, at this point, I’m scared. I had an appointment that Friday with the Doc but I knew my window of opportunity was closing (they say if you treat within a month, you have best results). I talked later in the day with a Doc friend of mine and explained to him what had happened. He said it was a “no brainer”; that a different antibiotic should be prescribed as I had tested positive for the Lyme’s. He was confused as well. It was 4:50 PM and I decided to call the clinic one last time.
When Sheila answered, she explained that the Doc was gone and she didn’t appear willing to connect me with the nurse. I explained that with Lyme’s there is a very short window of opportunity and I’d appreciate if she would at least try to connect me to the nurse. She did. When I talked with Billie I basically asked WHY the Doc decided I didn’t need antibiotics now when he’d been so adamant before. She didn’t seem to have an answer for this. I basically had to threaten that, should I have issues later, I’d have to report that I’d insisted on getting treatment but Sanford had refused… She said she would try to get in touch with the Doc and get back to me. She called back in 5 minutes to say that he’d called in a 2-week Rx of 500 mg Amoxycillan for me. WHEW!
Since everything in this small town closes early, I couldn’t get to the pharmacy before it closed but I happened to have some old Amoxycillan from a pre-treatment for dental work so I immediately took a dose. Then I took another in the morning and headed to town for my Rx that afternoon.
So… my Friday appointment was an anxiety filled time. I mean, how do I not just go off on this guy? I decided I’d just ask him what happened. After we walked through it, it turns out he thought I’d just had the fever Monday. I told him I was clear that I’d had this experience on Friday when I started the medication – his nurse did a shitty job of communicating or he didn’t hear her very well (my money’s on the nurse). Apparently, when you have this reaction on starting the antibiotic, they like to wait 24 hours to give another antibiotic. I didn’t even ask why the nurse didn’t communicate that to me… But this is the interesting part, and the reason I wanted to blog about it. It’s a very weird thing that happened to me and it has a cool name: Herxheimer Reaction.
A die-off reaction, also called a Herxheimer reaction, can occur when treating the Lyme germ, some co-infections, and yeast. It occurs as bacteria or yeast die during antibiotic treatment. It is common to have Herxheimer die-off reactions when starting herbal anti-microbials or antibiotics when treating Lyme. These reactions can also occur when new antibiotics are introduced into a treatment.
AHA! It appears that, when I took the antibiotic, I didn’t have an allergic reaction to it. Instead my body released toxins, proteins, and oxidizing agents that created a rush of inflammatory cytokines. Most Lyme’s Disease symptoms are excess inflammatory cytokine symptoms so… while I hadn’t initially felt any Lyme’s symptoms, I was SURE feeling them now!!
So, I’m back to liking the Doc – who I really LOVED after my first visit. He’s a friendly, smiley, knowledgeable dude and I was uber happy with his thoroughness. And I was happy with his explanation of the reaction I had. He noted that the bands for which I tested positive were not those that require Doxycycline to treat and the Amoxycillan should be fine. He did say we will do a 30-day regimen. Thank goodness.
So, if you are faced with Lyme’s, I hope this experience is helpful. But I hope even more that you won’t have to deal with Herxheimer Reaction or Lyme’s!
Oh, and what about the chest pain and racing heart? The assumption is that I picked up Mountain Sickness while out in Missoula and Colorado. Hopefully the symptoms will continue to wane until they disappear. And I’m still eating ice cream and cheese. 🙂