I’ve had a rough couple of days. As I was typing my previous post, I was falling asleep at the keyboard. Some days, I feel like I am getting better, so much better in fact, that I imagine I’m over the hump and life is going to get easier from now on. Other days, when the symptoms flare up, I feel like I’m starting over from the beginning. Only, I’m still aware that the bad days are nothing like my daily life from 2007 to 2011.
So here’s what happened. I went on my walk and run on Thursday. I was pumped full of endorphins. I was glowing. I was happy. I went to my Lyme Support Group (more on that below) and everyone said I looked and sounded great. I felt great. It was nice to feel well and alert.
When I woke up on Friday, I felt pretty tired. More tired than usual, but within the realm of what I expect after doing exercise. It takes me a few days to recover. I did some errands. I took a nap. My husband and I went out that night for dinner and a one-hour boat ride on Elk Horn Slough. (If you’re ever in Santa Cruz or Monterey, it’s a beautiful, quiet trip that puts you very close to lots of birds, sea otters and seals.) It was low key fun. Exactly what I could handle.
Saturday sucked. I hurt all over my body. My muscles ached. My nerves were sensitive to touch and they hurt even without any stimulation. I felt cold. I had a headache. I had no appetite and was nauseated all day. I was miserable. It felt like the Lyme was back for real. The hardest part was that I felt so much worse than only two days before. Instead of steadily climbing towards a healthy state, I was back in the dumps. What the heck?
Sunday I was exhausted. My body felt tired and cold. But my pain level had decreased enough that I could think. I wrote my blog post primarily to cheer myself up, to distract me from how my body felt. Sometimes it works to pull away from the daily ups and downs and remember the big picture: that I was extremely ill, disabled and in constant pain for several years, and now these are intermittent experiences of lesser degree. In the grand scheme of things, I am becoming well.
I coiled for Lyme on Sunday. I understood for real that I’m not going to have the break from active Lyme infection this summer that I had hoped for and expected. The key symptom that is dogging me daily is a generalized ache and nerve sensitivity on the right side of my body. It is only relieved on the days I coil for Lyme.
I’m back on a plan to coil for Lyme every three to four days because once a week isn’t often enough to stay ahead of the herxes. It means coiling for Bartonella a bit less, but honestly, I’ve continued to make progress with the coiling schedule I had, Bartonella three times a day for two days, twice a day the third day with two Lyme sessions on that third day. So I have no reason to fear I’d either be losing ground or stopping progress.
The Lyme herx this time was primarily cognitive. I was sleepy. My body wasn’t particularly exhausted after I finished coiling for Lyme. In fact, I felt better. But I was in a haze. I couldn’t think straight. I wanted to lie down and close my eyes. When I was eating dinner, I almost fell asleep on my plate. I was that sleepy.
The Lyme herx continued on Monday. Having gone to bed early, I found myself ready to get up at 7 am, very early for me. By the time 9:30 rolled around, I was ready for a nap. Not just ready, but barely able to think straight enough to take the nap on my biomat. I did that because I was cold. I felt the autonomic dysfunction symptoms of low blood pressure and cold extremities. Plus I felt like I had the flu, mild aches and fatigue. In a way, these are more generic herx symptoms, less specific to Lyme. I didn’t have much in the way of increased Lyme symptoms, which I’ve often had in the past when I coiled for it and herxed.
Monday afternoon I started feeling better. I spent time with a friend and fellow Lyme patient. We had quite a few good laughs together–exactly what I needed.
In the midst of the ups and downs, I’m completely dedicated to eradicating Bartonella as soon as possible. The Bartonella herxes seem to be shifting around. Most recently, my upper GI tract was irritated. It makes me feel like I’m not able to swallow, or more precisely that nothing I swallow goes all the way down. I often feel like there is something stuck there, even when I’ve eaten nothing for hours and I’ve drunk six glasses of water during that time.
Besides the swallowing, my gums have been a bit more sore and sensitive. Nothing major, just enough to notice a change when I floss, a change compared to a few weeks ago. I’ve had more indigestion and less appetite until yesterday. Now I’m hungry all the time, but hungry in a way that reminds me of when I’ve had ulcers in the past. So I’m monitoring the situation. If the symptoms continue, I plan to take L-Glutamine powder, which stimulates the stomach lining to repair and rebuild tissue. In any case, getting rid of Bartonella is taking a toll on my digestive tract.
Other symptoms have included burning pain in my lower abdomen, a familiar and unpleasant return of that symptom, and hot spots/stabbing pain in my limbs that appears suddenly and disappears within ten minutes. I’m also watching my abdomen swell up and go down a few times a day. It seems unrelated to gas attacks or how much or how recently I’ve eaten.
Meanwhile, I’ve changed the coiling protocol slightly, this time reducing the coiling on my outer thighs to one minute on each side. The reason for the change is that one of my coils gets too hot if I use it for 20 minutes at 832Hz. The reason I chose that location to cut down on is that I’m not sure whether it is necessary to coil there, but I want to do something, just in case, to cover the nerve pain down the sides of my thighs.
Bartonella Coiling Protocol
Coiling at 832Hz
Morning (total 38 minutes):
- Head: each side, top, back, 4 minutes per
- Spine: upper, middle, lower, 4 minutes per
- Liver (for blood supply), 5 minutes
- Spleen (for blood supply) 5 minutes
Midday (total 38 minutes)
- Between legs: thighs, knees, calves, 2 minute each
- Feet through coil, 2 minutes
- Each outer thigh, midway down thigh, 1 minute
- Each ilium front, 2 minutes
- Each hip bursa, 2 minutes
- Lower abdomen/pubic bone, 2 minutes
- Each side of ribcage plus the adjacent arm, 2 minutes
- Shoulder front and neck, 1 minute on each side
- Shoulder blades, 1 minute on each side
- Each ilium back, 2 minutes
- Butt (underside), 2 minutes
- Each butt cheek (up towards the iliac crest, for the joint and muscles), 2 minutes
Night (total 38 minutes)
- Head: each side, top, back, 4 minutes per
- Spine: upper, middle, lower, 4 minutes per
- Chest including heart, 5 minutes
- Abdomen, 5 minutes
I’ve been doing a little extra-curricular coiling. First, as a repeat to something I’ve done several times before, I’ve added a ten minute session on an area of high blood flow for Babesia on occasion. Mostly it is like an insurance policy. I don’t yet have any obvious symptoms of a Babesia relapse, but I also don’t want them to start while I’m still working through Bartonella. I can’t tackle both at the same time, there just isn’t enough time to do that much coiling each day. So every now and then, I coil my blood stream for Babesia to catch any cells that wake up before they start reproducing and making me symptomatic. I did that yesterday. I did it again today because my night sweat last night was a little more intense than usual.
The second coiling activity is less than an experiment but possibly an opportunity to learn. I kind of felt like I was at the beginning of a urinary tract infection. My urethra was sore but the urine wasn’t cloudy. So I’m drinking a lot of lemon water, taking two doses of D-Mannose a day for a few days, and coiling my bladder area using 727Hz. I picked 727Hz from the CAFL under UTIs, partly because it appears all over the place as a general use frequency which means to me that it kills something that our bodies are in contact with often. In the past, I’ve relied only on D-Mannose, which often does the trick. This time I’m a little more concerned because I’ve had the burning pain in my lower abdomen that I usually associate with Bartonella and it confuses my understanding of what is going on.
Finally, I decided to take a leap and coil my abdomen for parasites. I coiled for five minutes today at 310Hz. I’m not sure if this will accomplish anything. I’ll watch for a day or two and try it again to see if I get new symptoms or if current symptoms go away.
The Tick-Borne Disease Alliance has launched a campaign in support of research into Lyme Disease. Their first goal is to find a reliable diagnostic test. That would save so many people the expense and suffering of trying to get a diagnosis! In addition, they are trying to bring the spotlight on this epidemic to get the government to devote significant research funding into finding a cure.
The campaign is called Bite Back for a Cure. The organizers are calling on people with Lyme and their allies to submit photographs with key phrases printed up on posters. My support group submitted a picture. I encourage you to do the same. (There is more to the campaign, but this is the easiest way to participate.)