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Round and Round

Saturday, August 24, 2013

It’s been a rough couple of days. The Bartonella is definitely striking back. Beyond the physical stuff, which I’ll get to in a few paragraphs, there is the emotional toll. Bartonella makes me feel hopeless. I never can quite tell when it’s happening, but it exaggerates the feelings I already have about living with a chronic illness. Sometimes, I can focus on the positive and get past it. But every now and then, I need to acknowledge that these feelings are part of the backdrop of my daily life.

Don’t get me wrong, I’ve made the best of the hand I was dealt. In the six and a half years I’ve been disabled by tick-borne infections, I’ve accomplished a few things, made progress on my life goals, and had some really fun adventures. Most of the time, I can focus on these things (from travel to falling in love to researching treatments and learning to use the coil machine to moving across the country to throwing a huge party or two), and they get me through. But when I look closely, I can see how the physical and psychological drain of these infections has limited my experiences.

The wonderful experiences: going to Italy to celebrate my mother’s 75th birthday and spending every second day in bed, planning a huge party for my dad’s 75th birthday and being too tired and headachy to stand up or enjoy the people who came, spending my wedding fighting the need to sit still and take a nap, and on and on. Each of the great things I did, the things I enjoyed, involved fighting to get my body to cooperate enough to have the experience at all.

At no point in my life did I plan to spend 7 to 10 years with a chronic, disabling illness. Certainly not in my 30s. This was not what I wanted nor what I would have picked. On a daily basis, I confront pain, food restrictions, digestive problems, fatigue, fuzzy-headed cognitive difficulties and sometimes worse. I have fewer hours awake each day than a healthy person and my thinking and actions are much slower. The physical and psychological strain add to a feeling that I’m always fighting to maintain what I’ve got, with the fear of sliding back to the days of not being able to walk or use a computer or concentrate on anything because my pain level is too high. I live in fear of those days returning, which means I cultivate an undercurrent of defiance against the worst of these conditions.

Fear and defiance are an additional drain on my energy and attention. I try not to pay attention. Most days, I choose to pay attention to what I can do, what I have been able to do, despite the limitations. But today, and these past few days, I need to acknowledge them.

Round and Round

Round: the shape of my hips.

Round: the shape of estrogen.

Estradiol (and other estrogen molecules) have four carbon rings, making the molecular models look somewhat round.

Estrogen dominance, as a part of Polycystic Ovary Syndrome (PCOS), makes hips and thighs and bellies rounder. I treated my case of PCOS for several years with metformin. It worked, mostly. In the first half of this year, I started having other symptoms of imbalanced sex hormones, suggesting that the metformin alone wasn’t working anymore. I started having more PMS. I started gaining weight beyond where I had stabilized last autumn. The chin hairs that I used to call misplaced eyebrow hairs started generating misplaced chin hairs that were creeping away from my chin.

I added in Vitex, an herbal supplement, to aid in regulating my progesterone (which also has four carbon rings). When I was taking both metformin and Vitex, some nice things happened. For one month, my chin hairs seemed a little lighter. My PMS went away. I didn’t get sick the first day of my menstrual cycle.

Then I tried getting rid of metformin. I did this knowing that I might still need something to help regulate my estrogen, but also wondering if I still needed it. First month, no problem, sort of. Second month, problem. I gained another five pounds in those two months. The weight landed on my butt and thighs. It doesn’t seem too bad, but my cloths aren’t fitting quite right at this point. The chin hair has gotten out of control again. And my period was a disaster.

Enter DIM. DIM is supposed to regulate my estrogen. Maybe this will be enough. I haven’t gained anymore weight in the past two and a half weeks. But I may need a little more time to see how well it works.

When I have read about PCOS in the past, I’ve looked at the symptom list and identified many symptoms that applied to me. But never before have I watched them appear in real-time. It was amazing to come off metformin and see a noticeable difference over the course of two months. I didn’t think the changes would be so striking.

I have other ideas that influenced my decision to stop metformin. The drug is known not as an estrogen regulator but as an insulin regulator. One of the drug’s activities is to affect the way that intestinal microbes work. I’m hoping that as I continue to build my gut microbiota, the new makeup of probiotic bacteria and yeast adequately influence my insulin regulation. I know that bodies fighting chronic infection can succumb to the stress resulting in insulin resistance. I’m hoping that as I get to the end of fighting Bartonella, I might have recovered from much of the stress. That may bear out, but I might discover that I need to be on it until after the Bartonella (and possibly the Lyme) are completely gone. For now, I’m hoping that tinkering downstream, with DIM and Vitex, will be enough to support my sex hormones, until my body can heal enough to work properly on its own.

Bartonella Update

It seems that the Bartonella is continuing to get more active. I’m having ringing in my ears, audible pulsing in my right ear, increased muscle tension in my upper back and arms, pain in my hands, kidney pain, funky urine, intermittent headaches, irritated bowels, acne on my butt, neuropathy (tingling and pain) in my extremities, swollen glands in my neck, and, of course, increased emotional strain.

I’m not sure exactly how to interpret the resurgence of symptoms. It seems possible that as the Lyme wakes up (more herxing after the most recent Lyme coiling session than earlier this summer, just in time for the autumn flare) and adds stress to my body, the Bartonella is getting more aggressive. Alternatively, I may have reached a turning point in reducing the load of Bartonella and it has responded by reproducing more quickly. I don’t really know how to test what the cause is, but I continue to coil.

Disclamer

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