I’ve learned a lot over the past two weeks. I started with the kind of despair that I often get with a Bartonella herx (though I didn’t realize what it was until it was over), which led me to reconsider the way that I’ve been trying to get through the extreme fatigue I’d been dealing with since August. (No wonder the despair didn’t need to be triggered by an infection.) Beyond the fatigue and the recurrent pain, I was trying to get rid of a cough, also from August, and pain in my heels that impedes my ability to walk–pain that I’ve had since mid-October.
The quick rundown is that I tried another round of Chinese herbs, a different formula that tackles viruses. It came on the heel of a friend mentioning that HHV-6 flares are sometimes linked to respiratory inflammation. So I turned my attention to viruses. As I mentioned last time, I started with Epstien-Barr virus because it is on a list I have of the order in which the chronic infections usually activate. But as the two weeks progressed, I tried coiling for HHV-6, XMRV, and Cytomegalovirus (CMV). I had some interesting results, but none of the coiling got me through the fatigue or the pain in my heels and feet that I’ve had since mid-October. The coughing stopped between the herbs and the HHV-6 coiling.
After all of this, I had a moment when I decided to go back to basics. I started by going back to coiling for Bartonella more, since previous problems with pain on the soles of my feet were resolved with Bartonella coiling. Then I pulled out some maca I have in my cabinet and started with a small dose. That night, I slept more soundly (if a bit less), and had energy during the day the next day. I’ve continued with the maca and I feel like I’m getting back on track.
It comes on so suddenly. I start out with the usual fatigue and then I get overwhelmed with the number of years of my life these infections have cost me. It is almost nine years since I had to stop working. It is almost eight years since I got diagnosed with Lyme Disease. It is seven years since I realized the disability wasn’t going to go away “soon.” It has been almost five years since I stopped antibiotics and started using the coil machine. It is two years since I started eating food again (and got rid of all the food sensitivities) and have begun triggering the infections to try to dig out what is left dormant. It was three months that I found myself mostly at rest again, unable to do the things I thought were part of my life again (like cooking and going for walks). The feelings came on so strongly and I was ready to call it quits.
I’m not sure what call it quits meant. I wasn’t suicidal. I was just ready to give up hope that I could have my life back in any way on an even semi-permanent basis. I was looking straight at the ugly possibility that I will be stuck in this significantly incapacitated state forever. It was rough.
I cried during my acupuncture session. I moped for a few days. I got obsessed with trivial things that “felt wrong” in my life. I wished for a different life for myself and my future.
Then the despair lifted.
It was just as sudden. It disappeared after some Chinese herbs and some detoxing smoothies and lots of sleep. In the hours after it cleared, my mind calmed. I rested even more the next day. Then it hit me. I still haven’t gotten to the end of Bartonella yet. And this kind of despair always comes with Bartonella herxes and flares.
Reconsidering what to do
With a clearer head, I took stock. I’d been coiling for Mycoplasma fermentans three times a day for about two weeks. I couldn’t find any obvious changes that weren’t directly attributable to something else. The cough, fatigue, and heel pain weren’t changing. Even the aches in my joints and my ribs were consistently intermittent. I felt I had done enough with Mycoplasma fermentans (for now at least).
Babesia coiling was progressing. I was having some night sweats and some short migraines. (Short migraine being defined as going from aura to the headache relenting over the course of 12 hours.) The fatigue wasn’t abating, but I thought the Babesia treatment was worthwhile.
I was also coiling for Bartonella. I had modified my program to the one listed below because I had so much other coiling to do. I was having night heats (hot but no sweat, need to get up and cool off before going back to sleep) on the nights when I didn’t have night sweats. I had some, mild neuropathic tingling in my arms and legs, but nothing near as bad as August and September.
Bartonella (in a pinch) Coiling Protocol
- back of head – 6 minutes
- sacrum – 10 minutes
- head: each side, top – 2 minutes per location
- each shoulder knob – 2 minutes
- spine: upper, middle – 2 minutes per location
- back of head – 6 minutes
- sacrum – 10 minutes
I was not really progressing. But, the idea of tackling viral infections made me take note. In the past, I’ve had high antibody titers (thought to be indications of active viral infection) for Epstein-Barr and HHV-6. I’ve never been tested for XMRV or CMV. These were the viral infections I had on my mind.
Chronic Illness and Viral Infection
I spent a bunch of time on the internet looking up viral infections and their posited role in Chronic Fatigue Syndrome. I go back, over and over, to the research in CFS because I think Lyme Disease is one of the etiologies that triggers the CFS cascade of symptoms.
A story on NPR about how depression might be triggered by infections (including viral infections) gave me a place to start my research. (The story itself was disturbing on a variety of fronts, but it still gives me hope that people with chronic illnesses will have a better shot at being treated for the underlying causes of their illness rather than being bombarded with SSRIs.) One comment in response to the story mentioned the ME/CFS clinic at Stanford University. On that site, I found a list of infections (including Lyme!) that are associated with CFS. I was very appreciative that someone is finally doing this kind of research.
As I read through the information, I became more convinced that I needed to see if coiling for the different viruses made any difference, especially in the fatigue I was experiencing. I discovered that one of the treatments that the clinicians at Stanford are using is antiviral drugs. I used one in the months before I was diagnosed with Lyme Disease. It made me feel a little less tired for about two weeks, then ceased to provide any benefit. Even though I may have had active viral infections, I had other undiagnosed infections that were causing my symptoms. But who knows today what the biggest culprits are and which to treat?
Coiling for Viruses
I started out coiling for Epstein Barr Virus. I focused on my head and spine, the immune privileged areas where the virus is likely to hide out (or live inside nerve tissue). I also coiled my spleen, liver, abdomen and chest, in case the infection was in my blood stream or internal organs. I was also coiling my chest to see if I could somehow influence the direction of the three-month cough.
Coiling for EBV was pretty unremarkable. I used 880Hz. I think it triggered a few headaches. The pain in my heel lessened temporarily, but came right back. I used the frequency for a week but saw no big swings of improvement or herxing.
I had a much bigger reaction the first time I coiled for HHV-6 at 228Hz. When I put the coil on my sacrum, waves of vibration went down my legs. It was freaky to say the least. It is not an unknown sensation (at this point I’ve had so many strange and difficult to describe neurological sensations that I can’t even catalogue them), but one I’ve never experienced for five consecutive minutes. Very odd.
I used the HHV-6 frequency for about a week. I coiled a lot because of my body’s initial reaction to the frequency. I coiled the back of my head and my sacrum twice a day. Then I covered the rest of my head and spine, my spleen, liver, abdomen and chest. I even coiled my shoulder knobs, as I do for Bartonella. I had some neurological sensations the first time I did my shoulders. But after the first coiling session on each body part, nothing else happened as an immediate reaction to coiling. I got brief, high intensity headaches. My chest cold seemed to depart (finally!). The only caveat to the chest cold clearing up was that it happened at the same time I was using a very strong Chinese herb formula that might have cleared up the cough.
On a lark, I tried coiling my sacrum for XMRV (448Hz) and CMV(597Hz) in the same coiling session. By the time I was finished, I had a new headache and my ribcage hurt. I’m not sure if either symptom was related to either frequency. But it left me with the idea that I should come back to these frequencies.
After all these frequencies, I felt overwhelmed. What should I be coiling for? Which treatment do I prioritize? Are these working at all? What about continuing Babesia until this flare is gone? What about getting to the end of Bartonella? (And what if I need to coil for Lyme more than once every 7 days to keep the symptoms at bay?) And most importantly, why am I still tired all the time?
Maca and Bartonella Reboot
Things got back on track in the random and usual way. I read something that reminded me of something and I decided to try something I’ve done before (or always planned to do).
This time, I read Crazy Sexy Juice, by Kris Carr. I follow her blog and have enjoyed her movie. Anyway, I splurged on the book, hoping to find more interesting (or more potent) options for my not-so-smoothies. (I make smoothies somewhat regularly, but I don’t blend them to full smoothness because I like to chew to get my salivary enzymes involved in digestion.) The books has a partial list of superfoods that included maca. I have two bags of maca in my cabinet. I used to use maca for a long time, but I stopped it when I was dumping all my superfluous supplements. There is quite a lot left.
So I started putting maca in my morning smoothie (or hot chia “cereal”). The first day, I used 1/2 teaspoon. I slept really well that night. I continued to used 1/2 tsp or less for several days. I’m more awake, alert, and have some energy since the second day of using maca. I’m sleeping more soundly and fewer hours. This is the downside of maca. I think it regulates my hormones to stop me from sleeping more than eight hours, even if my immune system is crying out for extra sleep. Now, a week after starting maca, I feel the irritation in my bronchial tubes starting again. (Lack of sleep was where the three-month cough began.)
Despite the possible downside, I am so relieved to be able to cook and walk and hang out with friends and type and do all the other low-key things I like to do. Three months of blah was really horrible.
My mind feels more clear and less groggy-alternating-with-unsettled. I decided that I could try to pursue more coiling for viruses, but that it would be wasted coiling time. These viruses are going to keep coming back until my immune system reaches a homeostasis. For that to happen, I have to get to the bottom of the Bartonella infection.
I put more coiling time into the Bartonella infection for the past three days. I can feel the difference already. My kidneys are killing me. That is my most characteristic sign of a Bartonella herx. What I think I need to do is focus on Bartonella, especially after I’ve completed a few weeks of Babesia treatment after all the night sweats are gone. Then it is all Bart all the time.
If I reach a point where the Bartonella herxes calm down, even at full coiling time (three times a day coiling my entire central nervous system), I have some serrizimes on hand. These are supposed to help break up biofilms, which is where I think the reservoir of Bartonella and Lyme bacteria live. I have a new plan. And new hope.