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Lyme Disease and Sex

Sunday, April 1, 2012

Not Feeling So Sexy

When I first got really sick from Lyme Disease, sex was the farthest thing from my mind. The first year, when I was semi-paralyzed, lying on my bed, wondering what was wrong with me, I thought about my biological clock and whether I would survive to have children. But I wasn’t thinking about sex.

For a woman with a chronic illness, sex can be a taboo topic. Who wants to talk about how chronic pain kills whatever shred of sex drive is left over after the screwed up hormones demolish it? By the time the pain starts to occasionally diminish, the antibiotics have added a whole new set of problems in the digestive tract. Such events can make a woman feel even less sexy than she does when she’s in pain, which is not sexy at all.

Assuming all the various treatments go well, the infection related symptoms are reduced to a manageable level, and the hormonal system gets back on track, we still have to deal with the fact that we’ve come to loathe our bodies. It’s hard not to.

We already live in a culture that plants the seeds of disgust or hatred in the minds of most women towards their own bodies. Whether we compare ourselves to our friends and co-workers or to famous women from politicians to actresses, we generally feel pretty bad about how we look, what we eat, whether we exercise and how our bodies work. And when we don’t, we still have the worry in the back of our minds that if we do look any better than mediocre, we’ll be subject to sexual harassment or be targeted for attacks. (Even though our looks are not generally the reason or even the excuse that men who target women claim for why they targeted a particular woman.)

Back in my 20s, my friends and I were pretty open about both our love-hate relationships with our bodies and about our fears of being targeted. We were careful about when we went out at night, whether it was a buddy system or some other way of keeping safe. But as we got older, we stopped talking about these things so much. The feelings (and reality of what it is like to be a woman in the United States) didn’t go away just because we stopped discussing it.

In the midst of the complications, we were dating or in relationships. Sex was a topic of thought and conversation and, frankly, an activity we were involved in.

When Lyme Disease put my life on hold, many of my relationships, not just the (potentially) romantic ones, fell apart. All the good stuff I was doing or looking forward to was gone. I was left with a lot of pain and a lot of time and a lot of fear for my future.

I hated my body not for all the old reasons, not the competition or self-criticism, but because my body didn’t work anymore and I was in tremendous amounts of pain. It was horrible to need several minutes to go from sitting to standing. To need to give myself 10 minutes to get out of bed and shuffle a few feet to the bathroom. To not be able to walk down the hallway to throw out my trash or stand long enough to put my dishes in the dishwasher. Nevermind going out. That was nearly impossible. It took heroic efforts to get into a car and from the car to a doctor’s office.

I can’t say I hated myself. But I hated my body. I wanted to divorce the two. But that doesn’t work. So I hated my malfunctioning body with a new layer covering the old ways I didn’t like it so much.

To say that it is impossible to feel sexy, attractive, desirable or lovable under such conditions would be an understatement.

As the Body Heals…

Somewhere along the way, I had a lot of long cries about the pain. After those I cried about the time I’ve lost to this disease. I cried about the hopelessness of ever getting better. I cried about the dreams and plans that had to be cancelled. I even cried about being alone for so long.

None of that made me feel any sexier. I just hated my body a little less, and that was enough of an opening.

When I was well enough to go out on my own (3.5 years after the initial collapse), or rather be escorted by my mother to a neighborhood poetry reading and take a cab home, I met some people. They didn’t know how sick I was at the time, or more importantly, how sick I had been. People reacted to me like I was an averagely attractive woman in her 30s at a bar. What a relief.

That experience alone was enough to make me rethink the possibilities for my future. I didn’t feel sexy or attractive yet, but I realized that my outside was not as mortifying as my insides.

The process that started that night continued in fits and starts for another whole year before I found myself moving towards the relationship I’m in now. Feeling pretty sometimes. Feeling almost no pain for one day, then another day a few weeks later. Not being bloated sometimes. Having energy some days or part of several days in a row. As my body started to work again, I slowly distrusted it a little less.

I got a big boost from one particular antibiotic: Rocephin. Unlike everything else I took, which didn’t make me feel much better even as it slowly reduced my symptoms, Rocephin had some strange side effects. I took it for 13 weeks intravenously. On the days I took it, I slept less. On the days off, I slept better. I had killer herx-headaches. But, almost miraculously, it ramped up my sex drive. This was a long time in coming. I couldn’t believe it. I didn’t know the source of my new found interest in sex. (I assumed it was because I was considering a new relationship after an interminably long dry spell.) Once I stopped the Rocephin (because the other side effects were getting worse and the Lyme symptoms had moved back to my joints) my sex drive diminished within a week. So much for that.

I heard from other female patients that the felt better enough on Rocephin to be interested in sex again. It’s an unscientific sample. The increased sex drive isn’t listed as a Rocephin side effect. But unofficially, I believe there’s a link.

Here’s the best part: even though my increased sex drive only lasted 14 weeks, it gave me hope. That was enough.

I know it doesn’t work this way for everyone, but I do know that some elements of my story are to be found in the healing journeys of other people.

  1. Releasing the grief, fear and anger about the pain and disability through emotional discharge. (Contrary to popular belief, crying does help.)
  2. Physical healing reduces pain and generates emotional space to stop feeling disappointed by our bodies.
  3. Contact with other human beings can give us a different perspective on who we are outside the all-consuming fight with Lyme Disease.
  4. Resolving hormonal issues (or taking Rocephin for a while) can help us regain our natural sex drive.
  5. There are many sources and opportunities for hope that we can find and lean on.

A Sexy Petri Dish?

Even though I stopped actively hating my body, I’ve been very worried about having all these active infections. Lyme Disease and the other tick-borne illnesses make me feel like a petri dish. I certainly don’t want to pass them on to anyone else, certainly someone I want to have sex with.

I’ve read a lot about Lyme Disease and its known and theoretical modes of transmission. Most of the information is controversial and contradictory. I’ve asked several doctors what they’ve seen in their patients and read in the scientific literature. I’ve asked other Lyme Disease combatants/patients what they’ve experienced or learned. It’s been a big mess. There is virtually no information about Babesia and Bartonella.

There are known cases of fetal transmission of Lyme Disease. Babesiosis can be acquired through blood transfusions and through maternal-fetal transmission. One strain of Bartonella was associated with a horse having a miscarriage and another strain’s maternal-fetal transmission in cats is well documented, but there is no definitive information about humans.

For Lyme Disease, at least, the use of bacteriostatic antibiotics is known to prevent maternal-fetal transmission. It seems to put the B bergdorferii bacteria into its dormant state during which it doesn’t transfer through body tissue.

The take-home message from these two pieces of information is that at a minimum, people with Lyme Disease and other tick-borne illnesses need to assume the pathogens are blood-borne and any sexual contact that involves blood-contact must be avoided. Furthermore, when a person is symptomatic (as in when she is coiling, but maybe not sometimes on antibiotics), she is possibly more contagious.

I tried to find information that directly dealt with whether Lyme Disease can be transmitted sexually. One doctor told me that it is very similar to syphilis and should be thought of like an STD. Another doctor said that was incorrect because there are no lesions on the reproductive organs in Lyme Disease the way there are in syphilis. He suggested that it might be transmissible from males to their partners through semen but not from females through their vaginal secretions. He, however, warned me to be careful of blood, especially menstrual blood, from which Lyme bacteria have at least once been isolated and documented.

Update: A study gives evidence to the likelihood that Lyme bacteria can be sexually transmitted.

I asked both doctors about the couples I met who are convinced that one spouse gave the other Lyme Disease. The first said it was plausible but admitted that it was hard to document. The second said that since most people with chronic Lyme Disease don’t remember a tick bite, and since most couples either live or socialize together, it was likely that the second partner was exposed to a tick the same way the first was. So I got no real help there.

My conclusion is that the only way to go is condoms. I think Lyme Disease (and the other tick-borne illnesses) should be treated as though there is some risk of sexual transmission. This is especially true when one partner is either symptomatic or getting herxes from treatment (coiling, antibiotics or other alternative remedies). If it is truly possible to get rid of Lyme or put it into remission (where the body keeps it contained in its dormant form) then it might be possible to stop needing STD protection.

Coiling

No more Candida.

I added a second minute to my upper back in the Bartonella treatment. (See yesterday for the rest of what I’m coiling.)

I coiled the bottom half of my body for Lyme today.

Detox

  • skin brushing
  • antioxidants
  • kombucha
  • long walk in the sun
  • diatomaceous earth

Body

I woke up in pain again this morning. Not as bad as yesterday. I decided to add diatomaceous earth back into my detox routine. It had an effect the very first dose.

Still had muscular and bone pain, irritated bowels, short headache (about 1 hour) and fatigue. Still look tired.

Disclaimer

5 comments

  1. this blog entry obviously comes from a very intelligent, lovely woman. i related to every bit of it, including your “global” take on lyme disease. thank you for writing it, & know that there is at least one woman out there that has every concern that you do.


    • Thank you for your encouragement and solidarity. I’ve been trying to figure out how to make sure this isn’t a life sentence for me and hope that what I learn will empower others, like yourself.

      All the best,
      Rose


    • Make that two women… 🙂 I relate to every word & really do appreciate your honesty Rose – thank you.


  2. i, too, sincerely appreciate your words. it is very difficult to find camaraderie with those three terrible B’s- borrellia, babesia, and bartonella. a lot of what you said were precise thoughts and feelings i have also experienced. thank you for so bravely expressing yourself. you are not alone.


    • Thank you for your kind words. I wish you the best in your own healing process.



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