A fellow patient shares her story 05/30/2012Posted by thetickthatbitme in Diagnosis, Patient Stories, Treatment.
Tags: Borrelia, Borrelia hermsii, Ceftriaxone, Ertapenem, health, IV, Lyme Disease, medicine, misdiagnosis, Support group, tick bite, treatment
When I started this blog, one of my goals was to somehow extend the community and knowledge base of my support group to other patients out there in the ether. Up to now, I’ve been doing this by sharing research, either that was introduced to me by my doctor or members of the group or that I stumbled upon on my own, and by sharing my personal journey. A few weeks ago, a third way of accomplishing this goal occurred to me: to let the voices of other patients from the support group speak through this blog. Today’s post is my first attempt at that. Leigh is a member of my Borrelia hermsii patient support group who has generously agreed to share her hermsii story. If you have questions for her, feel free to leave them in the comments.
I moved to a beautiful coastal area and once I discovered that I could watch grey whales migrating south from the shoreline, I would hike out, sometimes, twice a day to see them. I never saw the bug that bit me, but I had what I thought was a mosquito bite that developed a red ring around it about a week later.
A couple of days after the bite, I left for China where I spent much of the trip sick, which I attributed to the trip. I caught a cold with a fever, but then got somewhat better. Two days before we left for home, I had terrible stomach problems. The Chinese airports have fever detectors you have to walk through before you can board any plane. I loaded up on Advil, Tylenol and Pepto Bismol to get home. Still, all of my symptoms seemed explainable; travel, food poisoning, jet lag.
It was now week three and I at least knew that a rash around a bug bite wasn’t a good thing, but when I made an appointment with my dermatologist he wasn’t available for another three weeks. I didn’t know I needed to drop everything and run to any doctor, so I waited. I kept getting alternately sick and better. By the time I saw him I was having terrible headaches. I was also losing concentration and feeling a bit “foggy.” The dermatologist immediately thought it was Lyme disease because of the red ring, and prescribed a very low dose of antibiotic. On the way to pick up the antibiotic, I drove off the road, hit a tree and wrecked my car.
After a little research, I found a local Lyme specialist who prescribed three antibiotics, Zithromax, Ceftin and Flagyl, each twice a day. After two months of this, it wasn’t working. I had stomach problems. I was very weak, tired, I had terrible headaches and my neck hurt so bad I couldn’t hold my head up very long. I couldn’t drive. I would sit at my computer unable to use programs I had been proficient at. I would repeat myself in conversations. I would make phone calls at odd hours, unaware of the time. I couldn’t do simple math problems. I couldn’t bear loud noises or bright light. I lost my sense of balance. I was rarely up or awake. I thought I was dying. I was neglecting my son and my husband, who insisted I look for another doctor. I made appointments with four different doctors. Luckily, the first was a neurologist who insisted I make an appointment with a specific infectious disease specialist in our area.
My appointment wasn’t for a week, but I realized I wouldn’t make it through the next week and he saw me the next morning. He was so off the wall and quirky that I had a friend of mine, who is a doctor, make sure he was a legitimate doctor! He told me that if he could make me laugh, he could make me better. He retested me and though my initial tests had shown a slight positive for Lyme, this test showed a strong positive to Borrelia hermsii, which explained the weak cross reaction for Lyme, another Borrelia. All of the literature says Borrelia hermsii doesn’t exist at low altitudes, but I know what I know, and I was at sea level when I was bitten. I asked the doctor what made him even guess Borrelia hermsii? He said it wasn’t rocket science; Borrelia hermsii is more prevalent in the west, and Lyme in the east.
The doctor prescribed a treatment that I had read showed promise, intravenous Ceftriaxone for six weeks. At this time, I was introduced to another “Lyme” sufferer who tried to talk me out of seeing this doctor and wanted me to see her Lyme specialist. We decided to compare notes in six weeks to see who was doing better. At the end of my treatment, there was no comparison between us. I was much better and she soon became his patient. She also had Borrelia hermsii, not Lyme.
I continued to be tested; my results have not gone down to a negative reading and may not ever. It showed up again 6 months after the first treatment in the form of a four-fold rise in my titer, but at least I caught it before I had raging symptoms again. I was retreated with Ceftriaxone followed by Ertapenem.
It’s now been almost a year since the second treatment and I have my life back. I feel focused. I’m working and doing things with my family. I’m planning a trip to Alaska with them this summer. I think the neck damage will always be with me, but even it’s better and at least manageable. I am eternally grateful to the miraculous chain of events that led me to this doctor and this treatment.
I was fortunate that I discovered a doctor who believes in Lyme disease and other tick borne infections. There are many doctors out there, along with uncooperative insurance companies, who doubt that Lyme and Borrelia infections even exist. Because of this there are many Borrelia infections that we currently don’t have tests for. I have encountered some skepticism in the medical field especially as I seek treatment for the physical damage that was caused by the infection. I believe that when you know something is wrong you have to be your own advocate. Only time will tell if I’m over this. At least I’ve quit running into trees!
The Proactive Patient Manifesto 04/20/2012Posted by thetickthatbitme in Whole Person.
Tags: communication, diagnosis, doctor accountability, embarrassment, labs, medical records, misdiagnosis, mistreatment, patient experience, patient rights, patients, proactive, research
I don’t know about you, but sometimes going to the doctor makes me feel sicker! Why is that? Maybe it’s because I often feel that I have no control over my patient experience. Over the years, I have developed strategies for being proactive about my medical care that assist my doctors in understanding my needs and concerns AND give me more control and peace of mind. So here is my *proactive patient manifesto* of sorts.
As a proactive patient, I vow to…
Keep organized medical records. At most doctors’ offices, you can request copies of all your records, including office visit notes, procedure/surgery notes, labs, and imaging. When you get labs, always request that the lab mail a copy of the results to you (in addition to forwarding them to your doctor). When you get imaging, you can often get your own copy on CD. I keep all of my records in a three-ring binder and use tabs to sort them into categories like infectious disease labs, general labs, gastroenterology, urology, neurology, ophthalmology, etc. I also typed up a one-page medical history summary that lists my past surgeries, medications, and diagnosed conditions, which I keep at the front of the binder. I bring this binder to every doctor visit so that 1) if my doctor needs to copy my records, he/she can do so easily; 2) doctors and their staff know that I mean business and I pay attention; and 3) I can hold my doctors accountable for explaining my current condition in the context of my medical history. For example, I may have lab work ordered by one doctor that is related to a condition for which I am seeing a different specialist.
Communicate as openly and directly with my doctor as I possibly can. This means honestly disclosing symptoms and describing concerns. This means that when my doctor says something I don’t understand, I must ask him/her to repeat it. This means keeping each specialist informed of what’s going on with all my other specialists (the medical history summary really helps with this).
Come to the doctor prepared with a (written) list of questions and concerns. This is essential to me because 99% of the doctors I’ve been to always try to rush me out of the appointment after the first 5 to 10 minutes. Have you ever noticed how when doctors ask us, Do you have any questions? our instinct is always to say no? A discourse analysis professor I had in grad school had studied this phenomenon in doctor visits and found that the use of the word “any” deterred patients from asking questions! He suggested that doctors instead ask, Do you have some questions? because this seemed to elicit a more positive response from patients. My doctors have always used any, but it’s much easier for me to respond, “Yes, I have some questions,” if I have a list of them right in front of me.
Report incidents of mistreatment by my doctor or his or her staff. If your doctor is part of a large practice or a hospital group, there is usually a Patient Experience or Risk Management department or person whom you can contact to report inappropriate treatment. I recommend writing down a detailed account of what happened as soon as you can. Often, these experiences can be so distressing that we forget the order or the particulars of what happened, and that can compromise our credibility when we go to report the incident. When you speak with Patient Experience, try to communicate what outcome you are hoping for, whether it’s waiving the fee for your appointment or a simple apology. If you are mistreated in a doctor’s office, I don’t recommend making a scene or threatening to sue. Doctors take being sued very seriously, and if you sue one doctor in the town (or county, or state) you live in, you may have difficulty finding another doctor to treat you.
Stay informed about research related to my health conditions. This means reading articles, asking doctors to recommend written resources, participating in patient support groups, and—of course—writing this blog.
Am I missing anything? What strategies do you have for staying proactive?
Tags: azithromycin, board certification, Borrelia burgdorferi, Ceftriaxone, chronic Lyme, doctors, Dr. Phil, IV antibiotics, Lyme Disease, Lyme-literate, media, misdiagnosis, PICC line, TV
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If you missed the April 13 episode of Dr. Phil on which Lyme Disease was discussed, you can watch it on YouTube.
Here are my reactions:
9:24 When she says she is positive for 4 strains of Lyme, I assume that she means that 4 bands (out of 10) on her western blot were reactive (positive). The word “strain” is misleading because it makes it sound like she has 4 different infections. Lyme Disease is caused by one species of bacteria named Borrelia burgdorferi. There are, however, other bacteria in the Borrelia genus that cause Lyme-like symptoms–B. hermsii being one of them.
9:41 She has a PICC line, which is more convenient for the doctor because she doesn’t have to stick her with a needle every day, but the risk of secondary infection is much higher than getting a new IV in the hand everyday.
9:45 Five IVs a DAY?!?! WHY?
9:52 Why is she being treated with IV Zithromax and not Ceftriaxone? (Zithromax/azithromycin is what you take orally when you have Strep throat.) I guess this explains the 5 IVs per day. Maybe if they used the right drug, she could cut back to one IV per day.
10:16 That freaks me out that she’s speeding up her own drip. Only the doctor is supposed to do that! (If the drip goes too fast, you can have a nasty adverse reaction.)
11:57 I wonder which tests she got, and in what order.
14:30 Here’s Dr. Auwaerter’s CV, if you’re curious. Scroll down to the publications.
15:08 You can read the text of the monkey study Dr. Bhakta alludes to here. BTW, Dr. Bhakta’s residencies were in Respiratory Therapy and Anesthesiology. She is not board certified in California. To read more about board certification, go here.
What were your thoughts on this episode? Drop me a comment.