Hello, Sue Chaitin here with a little progress on Beth. Many people ask if she is getting better. The answer is both yes and no. Lyme is a complicated disease to treat, and she has “won the jackpot,” as the doctor told her, on the type and number of co-infections, as well. She has several co-infections that she got when the tick bit her, and some of them are very, very tough. She continues to improve, yet still has many frustrating and sometimes frightening ups and downs. She does her best to take them in stride. Right now, she is grateful to be able to drive to get groceries and to be able to take care of her daily needs. She couldn’t do this when we left for Albany in May. I told her that I don’t know how she does it, and she responded, “I don’t know either!” She wants to be able to get back to work full time, and is using her time as wisely as possible until then to start writing again.
Her physician said that recovery usually takes a seesaw type of pattern. He asks her the same 2 questions upon every visit: what is better than last time? What is worse than last time? Then asks the same to questions to compare her progress from when she first arrived. He is looking to see that there is a slow, steady upward trend, and that the ups and downs follow that trend. He is also looking very specifically at the symptoms that line up with each co-infection. Her muscle weakness, for instance is better, yet she still have acute episodes where she suddenly feels like she can’t walk. This can come on suddenly now, but leave within a day or two. As long as these symptoms “move through” and dissipate, this can be a good sign that they are being drawn out and handled by the current treatment plan. Her brain function and speech stay consistently better and better, and her vision is getting back to normal. Again, ups and downs, but a steady upward trend here. Her digestive issues are still a problem. What had not been improving was her heart symptoms and some neurological issues where limbs spasm and sometimes go numb. She had been waking up every 2 hours throughout the night soaked in sweat and jolted out of bed by a pounding heart. Her doctor then worked with two naturopaths to address this, as the drugs were not handling the night terrors and associated heart issues properly, and her body was stuck in a fight or flight pattern that had a mind of its own. Thankfully, with what she is calling, “her magic drops” from this new course of treatment, the night terrors and heart palpitations are starting to dissipate and she finally has been getting a few straight hours of sleep. Sleep will also help her progress.
The other issue that has gotten worse, are her allergies to chemicals in perfumes, lotions, and detergents. This is particularly frustrating as many new patients, or relatives of patients who come to visit the IV room, forget that perfumes are not allowed in that room. She has to quickly exit the room as her lungs start to burn, fill up, and she gets dizzy and nauseated. This is not uncommon for Lyme patients whose immune systems have been hammered. Another patient used to pass out when exposed to perfume. This patient was able to, when the Lyme infections were more under control, heal from that. We hope this happens for Beth, as well. The nurses are wonderful, and quickly relocate her to another space, and the entire staff at Stram is working to help minimize this risk for her and other patients.
She has had these infections for a really long time, however, so the long term prognosis is still in question. Also, testing is not very sensitive and prohibitively expensive, so the physicians have to rely on symptoms. Physicians can’t, like with other infections, treat and then test to see if everything is “gone.” She was recently off of the IV antibiotics for a week to see how she would do. Some symptoms stayed steady, while others, like the heart and neurological issues got worse. And because it kept her from sleeping, she was miserable. As a result, she is back on IV and will taper off over the next few weeks, and then re-evaluate again. This may have to happen several times until the symptoms resolve, and hopefully go away or into a remissive state. A long treatment was something that we had expected, and why it is so important for her to be able to stay with a physician who is on the forefront of treatment.
Here is something she posted on Facebook that gives you a quick insight into what she goes through:
Saturday, I stood in the middle of Target, with my legs giving out from under me, acutely, my muscles just weakened, and I wasn't sure if I would make it back to the car. I did. But that just made me more determined to wear these today (see photo at top.) The doc said that improvement takes a seesaw like pattern. And to not be discouraged by a downward drop, but look for a slow, general upward trajectory. Pink high heels qualify, I think. Flip flops in the bag just in case. But these are more fun to look at while getting drugged up.
We really appreciate your continued spiritual, emotional, and financial support, it means so much. It is very stressful for Beth to be so ill, and know that her life depends upon money. She is with some of the best experts in the field of Lyme Disease. Your continued financial support will help her finish this course of treatment and stay safe. We will continue to keep you posted! Beth has been keeping a diary when she can, as it is very therapeutic (especially for a writer!), and will start to back fill some of the posts so that the dates will be in some kind of order. So look for more of the "Love Bite Diaries" soon.