Anyone who has Lyme with confections? Have you treated successfully to live a normal horse owner, rider, trainer…horse slave life? Anyone who has a piccline trying to live a normal horse life? Please weigh in if you are or have personal experience with any of these wonderful things. Any type of encouragement would be appreciated
Me. Presently not treating. I guess I’ve given up. But that makes me mad at myself so I’ll try something again soon. Maybe BVT again. FWIW I never did a pic line. I did a saline lock.
I have chronic Lyme and am living life pretty normally now! I work, take care of my horses at home, and have shown Grand Prix dressage and lower-level eventing.
I was diagnosed in 2014 but must have had it for years without realizing. It was actually my manual physical therapist who suggested I get tested because I had constant back pain that didn’t seem to have a biomechanical explanation. It was mostly low-grade everyday aching/soreness, but every so often I had a terrible flare-up and couldn’t ride, work, or sometimes even drive for weeks. My lower back would lock up and I would get stabbing, shooting pain in my glutes and down my legs. Even opiods didn’t touch it. I asked my primary care for a Rx for doxycycline and within 3 days of taking it, the severe back pain that PT and pain meds couldn’t help was 99% gone.
Unfortunately when I stopped doxy the pain came right back (not as severely but enough to let me know there was a problem), so I started seeing Lyme specialists. I never had to do IV antibiotics thankfully. I was at the first specialist for almost three years but moved on because I felt they weren’t trying hard enough to wean me off meds. Instead of pulsing meds and gradually increasing the time between them, they had me quit antibiotics cold turkey and switch to herbal supplements. Within a few weeks my symptoms returned and I was back on antibiotics full-time again. I also didn’t like that they had a room full of (non-FSA-eligible) expensive supplements and homeopathic stuff to sell to patients.
I transferred to Jemsek Specialty Clinic in 2017 and they immediately started pulsing/tapering my meds. Jemsek doesn’t sell supplements; if they prescribe anything you can buy over the counter, you buy it yourself and they will even tell you where to look for the best price. They’e in DC but do remote appointments so you don’t have to travel for each one. They’re not cheap (about $400 a visit after the first appointment, which is more) but my insurance reimburses me for a little over half. (Believe it or not this is affordable compared to the Lyme specialist my niece saw, who charges you $1500 just to become a patient, then more for each actual appointment!) I only had to go every six months or so since I had already been in treatment for a while and was fairly stable. The past couple appointments have only been once a year, so the expense and hassle are totally worth it.
One thing Jemsek had me do that was very helpful was stop eating gluten due to its inflammatory properties. I was grumpy (because bread and cake and cookies) as well as skeptical but within a few days, I noticed a big difference in my comfort level. I had gotten used to low-grade back stiffness/soreness and didn’t realize it was abnormal until it was gone. I was getting back into eventing around that time and used to get sore every after every jumping lesson. I thought it was just because I hadn’t jumped regularly in years, but when I stopped eating gluten I stopped getting sore. I was gluten-free for about a year, until I stopped noticing ill effects when I cheated.
I’ve been off antibiotics for almost a year now, for the first time since 2014! (I’m worried I might be having a minor flare-up from getting the Covid vaccine, but that’s another story.)
I wish you the best of luck! It is a strange, poorly understood disease that hasn’t been well handled by mainstream medicine. It’s frustrating to have to pay out of pocket for expensive specialists but if you can afford it, it might be the only way to get you feeling better. PM me if you’d like to chat more!
BO’s son had Lyme a few years ago. She took him to a specialist and said that she had a lot of knowledge about Lyme because she had so many horses. Turns out that wasn’t the case. She said she learned a lot. Some of it probably is applicable to horses, not just humans.
Thank you for sharing your experience
Yes, different treatment between animals and humans. The animals are the lucky ones. The Veterinarians are completely comfortable diagnosing and treating Lyme. Human doctors…not even close
Don’t ignore it. It will make it harder to treat/cure and the cost skyrockets. It can destroy your life
I’m ok most of the time. I yoyo between eating basically paleo & eating a plant based diet. One will rip my stomach to shreds & I’ll switch to the other. And then back again. Occasionally, I can’t tolerate much except beef. Weird as it is, it isn’t that uncommon based on other patients’ stories I’ve read. Some have eaten almost nothing but beef for years.
I started practicing yoga again ( & now teach it!) Yoga has consistantly helped ease symptoms for me. I do seem to get tired more than the average person. And my brain will feel foggy for no reason. Waking up is difficult some mornings – moving is painful (more mental than physical) It takes need lots of time to get going.
Oddest symptom for me is intermittant knee problems. I’m actually experiencing an episode right now. My left knee felt too swollen to bend. It isn’t visually swollen, though. Getting up & down from the floor has been awful – feels like my knees will shatter!