“They don’t intend to die, but more than 20,000 times a year — every 19 minutes, on average — that is exactly what happens. Accidental overdoses are now a leading cause of accidental deaths in the United States, surpassing car crashes… We often pay close attention if a celebrity dies of an overdose, but truth is, it’s our friends, neighbors and yes, our own family members who are dying.”
-Dr. Sanjay Gupta, CNN; November 19, 2012
I thought the title for this blog post was fitting because it’s the week of our 3rd annual Cat Trolley (which is really awesome and I hope I’m well enough to go AND enjoy it!), and because I easily could have died due to some inexcusable and negligent errors made by my LLMD (Lyme Literate Medical Doctor), and I’m not being dramatic by saying that. There have been other close calls in my life (some for reasons not involving health) and I do believe I must have 9 lives and some really awesome guardian angels or I wouldn’t be here writing this today.
My concept of time is all messed up, but a couple of weeks ago, my Lyme symptoms were the worst they’ve been in months . My LLMD had recently started me on additional supplements to fix some nutritional deficiencies that were detected by yet another expensive test not covered by insurance. I haven’t been following the recommended dosage for anything I’ve been prescribed at this point because I’m afraid of the damage that could be done to my liver and kidneys (I can’t count the number of pills I take in a day, but I take handfuls- even with the amount being greatly reduced). I also cut back on the Mitosynergy for a while to give my body a bit of a break. I’ve lost quite a bit of weight from being sick, so I probably shouldn’t be taking the same amount of medication or supplements as an average adult, anyhow (and my LLMD probably should have considered this, but never did).
Anyhow, there are a few factors that could have been playing a role in why I was feeling so horrible: the new supplements could have caused herxing (worsening of symptoms due to treatment), my taking less Mitosynergy, the fact that there was a full moon (don’t think I’m crazy for saying this- many Lymies seem to have symptom flares around a full moon…I’ve heard several theories as to why, but am not entirely sure what causes this), and that I had been pushing myself too hard again. It could have been one or a combination of these things that were causing me to herx or have a relapse (worsened pain, insomnia, muscle spasms, memory loss, confusion, etc). All I know is that it was a REALLY bad week and it brought me back to some very painful and frightening times.
I went to see my LLMD at the end of the week and told her how much worse I was doing. She said that she sees symptom flares in patients around a full moon, and then asked how I’d been managing my pain. I told her which painkillers I take- and that I take them very infrequently because they don’t seem to touch my pain, so why bother taking them? Nothing seems to help my pain at all (other than the Mitosynergy, which has really helped it overall). The reason traditional painkillers don’t help is that the type of pain we experience is neuropathic pain, meaning it’s a different type of pain signal that traditional painkillers (even narcotics) don’t target.
My LLMD suggested I go on Neurontin (brand name) which is a drug that is commonly used for neuropathic pain. I told her I had been on a very high dose of Gabapentin (same drug- generic name) and it did nothing for me. She tried telling me these two drugs were not the same BUT THEY ARE THE SAME, and if she’s regularly prescribing it, she should definitely know that.
I should have run screaming for the door at that point, but for some reason, I didn’t. She talked me into going back on Amitriptylene (another drug that is often used for neuropathic pain), which I had been on in the past. I told her that it may have given me minimal relief, if any, and she said my dosage was not high enough if it wasn’t helping. She then called in a prescription for me.
I proceeded to ask her if I it was safe for me to take the Amitriptylene with another prescription I’m on, knowing with almost complete certainty that there is at least a moderate drug interaction between the two. She told me it was fine to take both drugs at the same time, but I knew better, so I really questioned this. She finally said that it might be better if I didn’t take them at the exact same time, but I could be on both medications together.
I left her office confused as hell, with another giant bill for $732 dollars (my last appointment was something like $872)…and my confusion was not due to Lymebrain, either. I knew I was right. Regardless, I was in so much pain that I was desperate for anything that might alleviate it. I went to pick up the Amitriptylene prescription, and when I took it out of the bag, the label said in caps “DO NOT TAKE WITH…” so my LLMD must have looked up the drug interaction after I left and realized she’d made a big mistake. She probably should have called me to explain and make sure I understood, but of course, she didn’t do that.
That night, I took the prescribed dosage of 100mgs of Amitriptylene without the other drug I usually take. When I woke up in the morning, I thought I was going to die. I was shaking uncontrollably, and every time I tried to sit or stand up, I’d black out and fall down. I also felt like I was going to have a heart attack, was having vision problems, and was unable to speak. Fragments of words were the only things coming out of my mouth. I was completely terrified.
I drank a bunch of water and literally crawled on my hands and knees and got back into bed. I seriously considered going to the ER, but was staying with a friend and didn’t want to make a scene. If you are ever in a situation where you are questioning whether you should go to the ER, you go. I gave that same advice to my old roommate a couple years ago, and we got there just in time…she ended up needing an emergency appendectomy. Maybe next time, I’ll be wise enough to follow my own advice.
I remembered that my blood pressure was very low when I saw my LLMD (it was 80/48 and normal is around 120/80), so I figured that was part of the problem. The only way I knew how to help raise my blood pressure was to consume salt and hydrate. Somehow, I was eventually able to drag myself out of bed to get some brunch. Physically, I felt a little better after eating an omelet with lots of ketchup and drinking tomato juice and water, but was still having great difficulty thinking and speaking coherently. Needless to say, I felt like absolute hell the rest of the day.
The following day, I was doing some research on Amitriptylene and found that one of the main side effects is LOWERED BLOOD PRESSURE! My blood pressure was already extremely low, and taking that medication caused it to drop to a dangerously low level. My brain and heart weren’t getting enough oxygen/blood.
I went in to see my Primary Care Physician (PCP) ASAP. Although he is not knowledgeable about Lyme Disease (which he readily admits), he is an incredibly good doctor. Thank God there are some good doctors out there! I told him what had happened and he could not hide the shock on his face. He said he would never speak poorly about another physician, but was baffled that she put on Amitriptylene at all (given my current state of health), let alone 100mgs. He said he usually starts a healthy, normal sized adult on 10mgs! Well I am definitely not healthy and I am not normal sized, either, and she put me on a dose that was 10x higher than what an average patient should have started on.
My PCP said he was not at all surprised about how my body reacted to the high dose of Amitriptylene. Potentially, I could have gone into shock, suffered organ damage, and even death. And then there’s the fact that if I had not known to grill my LLMD about the drug interactions, I probably would have taken the other drug with it, and that would have been enough to kill me.
Anyhow, I’m feeling VERY lucky that the outcome of this was not any more serious, and am grateful for the countless hours I have spent researching this disease, treatment, drugs, etc. I knew I needed to raise my blood pressure somehow, and fortunately, I knew how to do it and did it soon enough.
I obviously will not be seeing that doctor ever again, but fear for the safety of her other patients. I am absolutely beside myself in thinking about what could have happened because of her carelessness or lack of knowledge or whatever caused her to put me in such danger. This illustrates the importance of educating yourself about anything you put into your body, and not blindly putting your faith and your life in the hands of a doctor just because he/she is a doctor. Yes, there are many good doctors out there, but there are also many bad ones. This LLMD is a licensed Medical Doctor who is ILADS trained (International Lyme And Associated Diseases Society) – a very progressive international training program for Lyme Disease treatment. She also studied under one of the best LLMD’s on the East Coast, so on paper, she appeared to be an excellent doctor.
Once again, I am counting my blessings, and am so grateful to be alive, meow.
I am so sorry to hear about your near death experience with all these meds. I am sorry that the Dr. you turn to, have not really helped you in getting better. It is a wonder you have not given up altogether with how sick you are and so few people know how to treat your condition. I will continue to pray for you and send positive thoughts that soon you will find the right kind of Dr. to treat you and you will consistently feel improvement.
Sending love and good intentions to you.
Judy and Dan
Thank you. Yeah, it’s a mess trying to navigate through all of the controversy and bad doctors and everything else on top of being sick. I really appreciate the prayers and sweet message. I’m planning on going back to Mayo soon, so we’ll see how that goes. Lots of love ❤
What an awful experience for you. Did your pharmacist question the dose (because he should have)? Do not hesitate to ask the pharmacist about interactions.
No, no one said anything about the dose, but my PCP said it’s a drug that needs to be started at a very low dose and increased over time- one of the reasons being that it causes blood pressure to drop and your body needs time to adjust.