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Immune Privileged

Wednesday, October 21, 2015

I’ve had two weeks of lots to do and lots to think about. I went to the East Coast for a funeral and for my mother’s 80th birthday. The original plan was to visit my mother, but the trip started sooner than planned when there was a death in the family. By some magic, I pulled myself together and was able to function for the duration of the trip.

Since I’ve been back, things are rocky again. I’ve been overtired and having a variety of symptoms, mostly in my chest (the cough that won’t go away) and my digestive tract. I have some pain and other neurological symptoms (especially today, with the right half of my body hurting and oversensitive), but the key thing is the unrelenting fatigue. Before I left, I started to try out a frequency for Mycoplasma fermentans, acknowledging, after all this time, that other infections might be active in my body. I have new insight on that, after trying out the M. fermentans frequency, and the results are below. The time on the couch and in bed, listening to the radio, surfing the web, as well as a trip to the acupuncturist have me thinking differently about what I should try next.

The Magic of Stress Hormones

I knew my cousin Tommy was sick. Many of us knew that he was having abdominal pain for about a year. Eighteen months before that, he became diabetic, but was able to control it by losing weight way faster than his modified diet could have dropped the pounds. In August, he was diagnosed with pancreatic cancer. From there, it was a battle that lasted a very short time. Only two months. Now he’s dead.

The scary thing, his age, only 49 years old, weighs on me. The other scary thing, the time from his first  symptoms to his diagnosis, over 2 years, meant that he lost 2 years of opportunity to fight the cancer before it reached the point of no return. As a person with chronic Lyme Disease, these events tend to upset me: time lost when the illness gains ground, being struck down so early with lots of good years expected. But he’s dead. I’m still fighting. I’m at a loss. When I think my fate is unfair, this puts back in perspective how much worse things could be.

Not that I need to compare. But this kind of stress weighs on me, weighed on me as I was hurriedly looking for a motel and figuring out logistics to leave the day after I got the news. My husband, Joe, did the hardest part, spending an hour on the phone so the change in plane tickets wouldn’t cost as much as two months of mortgage payments. Then we packed, arranged cat care, said a quick good-bye to Joe’s son who was visiting and suddenly we were on the plane.

The cough, which had been coming and going and coming and going, was on a two day hiatus, as I tried coiling for Mycoplasma fermentans. I wasn’t sure if the absence of the cough was just part of its cycle or if the frequency was responsible. Either way, I was grateful not to be coughing as we left early the next morning for our flight.

Although I was exhausted before we started, I was pumped up on all my stress hormones. These got me through the plane ride to DC, the 5 hour drive to Long Island, the days at the funeral home seeing relatives, the grief of the experience, the time with family in between events, the funeral itself, and a quick stop to visit the graves of my dad’s parents and sister and her family.

I managed to keep the energy going by taking a side trip one morning to the Atlantic Ocean, Jones Beach to be precise. Joe needed a break from the stress and proposed dipping our toes in the water. It was just what I needed, too. We sat on the beach for an hour before heading back to the grieving and consoling.

Dipping our toes in the water at Jones Beach.

Dipping our toes in the water at Jones Beach.

The stress hormones didn’t die down at that point. We still had a 9 hour drive after the funeral to Williamsburg where my parents and my sister’s family live. Then I had three days with my niece and nephew who are of the opinion that I should play with them every moment they’re awake, nap with them, and sleep with them at night. If only. I need a few minutes after they go to bed. And of course, there are things to do with the adults. It was a full trip to say the least.

My nephew and I played tag in Colonial Williamsburg. He can run as fast as I can. I was a bit concerned. As he gets older (than his current age of 4) he’s going to get faster. As I get older (from my current age of 40) I’m going to get slower. Hmmm. The main consolation is that I can run at all.

When we got back from the trip, I spent a day horizontal, first in bed, then on the couch. I really couldn’t do anything else. I had one somewhat busy day, then I really crashed. As the stress hormones finally cleared out of my body, it was time to pay the piper. I’ve been doing a lot of resting at home. I’m back to coiling and back to traditional Chinese medicine.

Mycoplasma Fermentans

When I got back in town, I started with a day of coiling for Lyme, then moved on to figuring out whether Mycoplasma fermentans was something I should be coiling for. To review, I’ve been wondering whether the ongoing fatigue and other symptoms, including coughing and bowel troubles, were from an untreated infection, or whether the real issue was the need to detoxify my system from the die-offs from the coiling I’ve been doing.

On the side of an untreated infection, I have a new symptom pattern, particularly, coughing to go with the fatigue, pain on both sides of my ribcage (as opposed to only the right side which I get with Lyme), pain in my heels-especially on the left foot, some other joint pain, and irritated bowels that tend toward constipation but alternate with urgent stools. Other considerations include commonly undiagnosed and difficult to diagnose infections that other people with Lyme report. Other coil machine users report that there are infections that don’t activate until the big 3, Lyme, Bartonella, and Babesia, are more or less gone or deactivated. Then it is time to work on the previously dormant infections. Also, when I took the last round of Chinese herbs, I had a herx reaction (headache, loose stools, sweats, more pain than usual, itchiness, low blood pressure, insomnia). That points to an active infection other than the Big 3 infections which no longer give me noticeable herxes.

What got me thinking about detox was a video I saw on Lyme Less, Live More, a reminder that detoxing will often reduce symptom severity. The only thing is that detoxing, while being a necessary step, is not actually a solution. I had increased my detoxing activities (mostly with teas and supplements, greens and fiber) but the symptoms were staying put.

Right before I left, I coiled a few times for Mycoplasma fermentans at 690Hz. I coiled my whole body, including all my extremities for a minute, plus extra time on my central nervous system, my abdomen, chest, liver, spleen and kidneys. It seemed that the coiling got rid of the cough. I was pleased but not convinced.

When I came back from the trip, I was overwhelmed with 4 infections that I thought needed to be treated with the coil machine: Lyme, Babesia, Bartonella, and Mycoplasma fermentans. It’s too much. I only need to coil for Lyme once a week (I think), since it is not symptomatic right now. Of the other three, I thought I would give Babesia a one-day coil to coincide with the nightsweat that comes at the beginning of my menstrual cycle. The same day, I coiled for Bartonella and M. fermantans.

I got a whopping headache that day. I rejoiced in my pain, thinking that I had hit upon something with the M. fermentans. Only one problem. I woke up the next day, coiled again for Bartonella and M. fermentans, and no more headache. It seemed to disappear too quickly. I held back my judgement, but made note of the oddness.

The rest of the week, I coiled for Bartonella and M. fermentans. This had no effect on the cough which came back when I got home. This had no effect on my fatigue. In fact, the fatigue was slowly getting worse and worse. I was mildly dismayed. Maybe I don’t have M. fermentans. I’m just not sure.

Yesterday, the fatigue had reached a point where I thought that I might still have an active case of Babesia. I added 753Hz as the Babesia frequency back into the daily rotation. BAM! The same headache as last week, turned down ever so slightly on the intensity. This answers the question about what is causing the herx headache: Babesia, not Mycoplasma fermentans. Today, I coiled again for Babesia. The headache is back, but at a lower intensity.

Just for the record, after coiling my whole body for Mycoplasma fermentans twice, I changed up the coiling plan. I focused on my chest, abdomen and central nervous system, since those were the areas that symptoms came from. I’m writing out my daily coiling plan even though I can’t really recommend it because it had no discernible effect on me.

Mycoplasma fermentans

690 Hz

  • Head: each side, top – 1 minute per
  • Back of Head – 4 minutes
  • Spine: upper, middle lower – 4 minutes per
  • Chest – 10 minutes
  • Abdomen – 5 minutes

The whole episode of coiling for Mycoplasma fermentans reminds me of how I approach coiling and healing more generally. First, I never believe what I read on the internet or what someone tells me until I confirm it for myself. I use the internet and fellow Lyme patients and health care professions as sources of clues as to what I might do to take the next step in getting well. From the information, I formulate a plan or a hypothesis, which, as I test out, I can learn whether the information I uncovered applies to me. It may well be that I don’t have a Mycoplasma fermentans infection, or that the one I may have doesn’t respond to 690Hz, or that it isn’t active right now. However, I did learn that coiling for Mycoplasma fermentans at 690Hz doesn’t seem to affect my constellation of symptoms, for better or for worse, so it is not what I need to devote time to during the current period of time.

Immune Privileged Tissue

During my week of couch-bound fatigue, I happened upon a few pieces of information that have changed my perspective on these chronic infections. First and foremost, two people talked to me about viral infections. A friend reminded me that sometimes chronic HHV-6 infections in people with Lyme Disease (or fibromyalgia or chronic fatigue syndrome) are associated with respiratory inflammation. That was one clue. Then when I spoke to my acupuncturist, she said that a lot of my symptoms are associated with high viral loads. She’s taking this into account as she prescribes an herbal formula.

The next clue was an article on NPR about the limits of what is known about Ebola. The article was refreshing in so many ways, particularly the open-minded attitudes of medical researchers to acknowledging that they don’t have all the answers. It had its frightening aspects, as do all articles about Ebola. In the article, there is a discussion on where different virus species hide out in the body and persist, long after being cleared from the blood stream and the areas that are easily reached by the human immune system. Places the immune system doesn’t reach, such as eyes, joints, nerve tissue, and, in men, testes, can harbor a virus for a long time after the host is “cured.” Thus, common virus species, in addition to Ebola, can cause blindness, long term joint problems, and relapses in the nervous system. The common examples of the nervous system relapse is shingles occurring decades after a person has recovered from chicken pox.

These areas are not accessible to the immune system, possibly because the immune system can potentially damage or destroy these tissues, even as it does its job normally. They are called immune privileged tissue.

All this got me thinking about how the infections I have could be storing themselves in my body. At this point, almost all my symptoms have a neurological component, fatigue, cognitive problems, tingling, dysautonomia, today’s strange pain on the entire right side of my body, etc. In some ways, it doesn’t matter which infection I’m working on: the flares and the herxes are primarily neurological. The only infection this isn’t true of is Babesia. That infection is stored in a different immune privileged  space: bone marrow.

Back to the neurological mess. I have often believed, as a result of my symptoms and a feeling that pervades my mind, that much of the infected areas of my body are my sacrum as well as my cervical spine. Maybe this is where all the biofilm colonies live. Or maybe I have a reservoir of bacteria (Lyme, Bartonella) and viruses (HHV-6 and Epstein-Barr Virus) that have taken root in these locations, only activating when my immune system is otherwise overtaxed.

I mention HHV-6 and EBV because I’ve previously, during the years of disability, had off-the-charts antibody titers for both of them. I even took Valtrex, which was supposed to help with the viral infections. I didn’t notice a benefit that lasted beyond the first few weeks, but this drug might not be able to get into nervous tissue any better than my immune system can.

In the present, infections in immune privileged places may mean that while I’m so busy trying to figure out which infection causes which neurological symptom, I’m really on a wild goose chase. The symptoms may be a result of any active infection in the neurological system. This would explain why coiling at frequencies for the infections that previously got rid of symptoms doesn’t work anymore. The symptoms are similar but a different infection is active.

Today, I stopped coiling for Mycoplasma fermentans. I started working on Epstein Barr, 880Hz. In the past, 880Hz has done very little, possibly because I only coiled my abdomen. By the time I go to bed tonight, I will have coiled my spine and my head, three or four minutes on each location, as well as my liver, spleen, abdomen and chest for 5 minutes each. Having already done my spine and most of my head, I’m already feeling the neurological pain spreading through both arm and my neck, getting worse as I type.

Maybe I have made enough of a dent in the bacterial infections. Maybe it is finally time for me to start dealing with the viral infections. It’s time to test out this new possibility.

Bartonella

With all this excitement, let me not forget to mention Bartonella. I am still a little bit symptomatic. I still herx from it, with constipation, acne, some insomnia, some kidney pain. That infection isn’t gone. But, it might possibly be the reason I am now tackling other infections. As the Bartonella slowly goes away, I think it is having an impact on the functioning of my immune system. And as the immune system changes and responds, I think it gives the other infections an opportunity to reactivate.

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