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Lyme, Bartonella & Menstrual Mishaps

Monday, May 13, 2013

I went to a new gynecologist last week for my annual exam. We talked a little about my menstrual cycle, including the extended PMS I’ve been suffering from the past few months. Her solution was to give me birth control pills so I won’t ovulate anymore.

I resisted. She insisted. I resisted some more. She told me to think about it and call her if I changed my mind. She claimed that taking a low dose pill would also help prevent further bone loss. I’m not so sure about all that.

I have a different attitude about my menstrual cycle and all my other hormonal imbalances: I want to set them right again. I haven’t given up on my body’s ability to function. In fact, things keep changing as I get rid of the tick borne infections. Yes, it means that I end up suffering from some symptoms that could potentially be suppressed with a pharmaceutical agent, but that is exactly the road I’ve been on as I try to figure out how to remedy the cause of my symptoms rather than mask them.

(For my previous posts on menstruation, try Women and Lyme Disease.)

Bartonella and Menstruation

From what I can tell from Bartonella flares I had prior to contracting Lyme, Bartonella gave me mild to moderate PMS. The symptoms included cramping, water retention, swollen breasts, acne, insomnia and emotional swings. Most specifically, I remember these happening for six months when I was 16 years old. It was horrible. The emotional swings were the worst part. I remember walking down the street and contemplating all sorts of scenarios involving my brains and blood spilled on the sidewalk.

The other thing I remember was intense cramps, bad enough to make me nauseated, so bad I couldn’t stand up. I missed school because of the cramps. With them came headaches and somnolence. First I would lie on my bed, or the bathroom floor if I couldn’t make it back to my bed, and I would suffer, unable to move. Eventually I would fall asleep. It was the sleep of the dead. I couldn’t wake up no matter how hard I tried.

When the Bartonella flare was over, and all the other non-menstrual problems disappeared, so did the menstrual problems. I went through the rest of high school and college with nothing beyond moderate cramps and mild mood disturbances. These seemed in line with what my peers were going through.

Lyme and Menstruation

Once Lyme Disease entered the picture, and long before I was aware that I had contracted it, I started having much worse problems. First, the Bartonella became active again. I went back to having PMS, though it started only 1-4 days before each cycle began. Then I started having Lyme flares, too. I had joint discomfort, fatigue and headaches as part of the PMS cycle.

On the first day of my menstrual cycle, I would get really sick in a very sudden way. It didn’t happen every cycle, but when it did, I needed someone to drive me home from work. I would get cramps, followed by diarrhea and usually vomiting. When my digestive tract was empty, I would get overheated and sweat profusely. Then I would start to get very cold and begin shaking uncontrollably. All this would generally happen in the bathroom, where I was lying on the floor, too weak to stand up. If I tried to get up, my thigh muscles would turn to jelly and I would land with a thud. Once my legs got a little solid, I would try to stand up and get help from a co-worker to bring me home. At that point, I would have very low blood pressure and start to white out, so I would sit until I could stand. Then wait till I could walk. When people saw me they would say I looked gray and should go home to rest. No kidding.

This started in January 2002. It got to the point that by 2006, every month was a disaster. Only since 2012 have I gone back to having these kinds of cycles only during Lyme flares (Jan-Feb and Sept-Oct). Four times a year is better than 12 times a year.

Long Term Illness and Menstruation

As if the obvious monthly problems weren’t enough, having chronic infections, including Lyme and Bartonella and possibly Babesia, active Epstein-Barr Virus and who knows what else, had long term consequences for my hormonal systems.

I’ll stop here to recommend the books, Living Well with Chronic Fatigue Syndrome and Fibromyalgia by Mary J. Shomon, and From Fatigued to Fantastic by Jacob Teitelbaum, which do a good job explaining the effect of long-term stressors on the hormone regulation. I won’t try to summarize from memory, since I gave these books to friends who needed them after I read them. But the basic idea is that the major endocrine glands: pituitary, hypothalmus and adrenal glands, get out of whack trying to keep up with the stresses caused by infection (or toxin exposure, etc.). (I don’t necessarily recommend the treatments in these books since I’m more focused on Lyme and other tick-borne illnesses.)

Lots of things happen as a result of the three major endocrine glands having problems: low blood pressure, intense fatigue, sleep problems, poor temperature regulation, weight gain or loss, memory problems, etc. Part of the fall out is often that the sex hormones also get off-balance. Then there is a whole new set of problems. The ones I experienced include, ovarian cysts (which causing a painful burning sensation for days when they rupture), PCOS (polycystic ovary syndrome) which is characterized by hormonal problems not just the ring of cysts for which it is named, missed periods, painful periods, extreme PMS, illness with menstruation, body hair growing in the wrong places, head hair getting thinner, hot flashes, night sweats, thinning skin, signs of early menopause, gray hair, osteoporosis, shrinking breasts, growing waistline and so on. It’s a nightmare to consider all these things.

The ways that sex hormones, and in a related category, thyroid hormones, can dysfunction, comes in a variety of unsavory flavors: too much estrogen, too little estrogen, too little progesterone, too much progesterone, too much DHEA and other androgens, and too little thyroid hormone. Plus, once one gets too high or too low, the others respond with their own dysregulation. This can even lead to problems with neurotransmitters (as if I didn’t have enough problems with my nervous system). The upshot is that I have a huge mess to deal with.

To learn more about female sex hormone regulation, I recommend the book, The Hormone Cure by Sara Gottfried. Not only does she explain how the hormones work with each other, she offers ways to figure out which imbalances one has, plus natural ways to nudge hormone regulation back in the right direction.

Back to the problem of communicating with my gynecologist: she isn’t a bad doctor. She also isn’t the first to suggest using hormones to stop me from ovulating. The first time (and there have been others in between) was when I had a huge ovarian cyst, the second of its kind, and it decided to burst in the middle of the night while I was sleeping. Then not sleeping because the pain woke me up. Since it was the second cyst, my gynecologist at the time thought the best approach was to prevent me from making any kinds of cysts, including the monthly ones that are the point of the menstrual cycle. I reluctantly agreed. After two months on birth control pills and six weeks of diarrhea, I stopped taking them forever.

The real issue, as I later learned, was that the sex hormones were the last in a string of hormonal imbalances. It’s like trying to clean up a dirty lake without shutting down the paper factor that dumps its waste into the river that empties into the lake. It’s a battle lost before it begins. Even if I was able to tolerate the artificial sex hormones, the rest of my hormones were still getting more and more off-kilter as the infection proliferated.

Now, twelve years after the tick bite that gave me Lyme Disease, and six years after becoming disabled by the infection, I have the fallout from all this hormonal turmoil. My menstrual cycle is changing again, conferring two weeks of PMS every month. My weight has gone up. And, most significantly, I have osteoporosis.

Trying to Rebalance

A while back, when I got diagnosed with PCOS a second time, I agreed to take metformin. I had all sorts of reservations about whether I was covering over the symptoms, etc. But I decided I needed to intervene in some way to prevent further hormonal disruption. The reason metformin appealed to me is that it helps get the body working again. It regulates insulin, propping up a broken system until I could get it working again.

Don’t get me wrong. The only way I see of getting my menstrual cycle back to normal is to get rid of all the infections. Anything short of getting rid of the infections is a temporary solution that never quite seems to work the way it promised. All the drugs and supplements can only reduce the suffering for a while, they don’t fix the problem.

I’ve tried other things to help regulate insulin, chromium and NAC, the most obvious of them. They weren’t enough. My body was too far gone and still fighting the infections. I still take chromium once or twice a week. NAC is still in my daily pill regimen because it protects my liver from Lyme herxes.

These days, with the new extended PMS profile, it looks like I haveĀ  estrogen dominance, which could be too much estrogen or not enough progesterone. Either way, there is an herbal supplement called Vitex, which I just started yesterday, that is supposed to help the body regulate progesterone. In some women it also resolves PCOS. In most, it resolves the long PMS that starts at ovulation. My plan is to take it for three months and see if that makes any difference. If it does, I’ll likely stay on it for about a year while I continue to whittle away at the infections still in my body.

In addition, I’m going to take a break from metformin sometime this summer. Last time, that didn’t work out to well, with my period taking longer and longer to come. I’m hoping that this time I’ll have gotten rid of enough Bartonella and Lyme to be able to stop the metformin. Plus, I’ll have the vitex supporting my hormone regulation.

My goal remains to be off all the supplements and drugs, to be done with coiling, done with these infections. I’m heading towards it, but when I reach a point of good health again, I’ll reconsider using supplements, if necessary, to keep myself in good shape.

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