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Women and Lyme Disease

Sunday, March 6, 2011

Every month, during my menstrual cycle, I’m reminded of what Lyme disease has done to my body and what it has done to the trajectory of my life.

Menstrual Problems

For years (specifically 2002-2010) my menses were horrible. As I mentioned yesterday, in addition to killer cramps and headaches, I had vomiting, diarrhea, weakness all over my body–especially my legs–that made it nearly impossible for me to stand up, chills and sweats and uncontrollable shakes that I would experience lying on the floor in my bathroom because I was too weak to get up after vomiting. I would try to hide all this from my roommate if I was lucky enough to get my period when I was home, or I’d try to hide it from my co-workers if I wasn’t so lucky.

Back when I lived in New Haven, I had friends who could drive me home from work when I suddenly turned a pale gray, got really lightheaded and almost passed out. Once I moved to New York, things got much worse. It was harder to get home from work, and I travelled a lot.

There was the time I was in Las Vegas at a conference where I was supposed to attend several key meetings and I ended up holed up in my room. (Those who didn’t know I’m dry thought I was totally hung over.)

Or the time I was too sick to stay in a cab all the way back to Queens and landed in a hotel room that my supervisor from California was staying in. Not only did a male co-worker find me glued to the floor in a bathroom when I disappeared from a training, but my female supervisor saw a replay of the Las Vegas incident.

If I were them, I’d think I was looking at a woman with a drug problem.

Biological Clock, Part 1

Back then, as I waited to fall into oblivion after one of these episodes, I would tell myself that all this reproductive system distress would be worth it as long as I got to have children.

Now I’m not sure if that will ever happen.

In some ways, I’m glad that I didn’t try in the years between when I got bitten and when I got debilitatingly ill. I could easily have been one of the women with Lyme that mysteriously miscarrry (multiple times) or has a child with Lyme but doesn’t know why the baby is always so sick…and start showing severe Lyme symptoms herself at the same time.

I’ve read so many of those stories.

Meanwhile, I’m getting older. I’ve spent most of my 30s battling this illness. I have no idea when I’ll reach the end point. I’m single. Until I have another few months of feeling somewhat well (keep your fingers crossed for the summer), I’m too tired and sick to start meeting people or begin a relationship. So I can’t imagine that even if I get well enough to have a child before it’s biologically too late, that I’ll be far enough into a relationship to become a parent.

To those of you who think I could do it myself, you’re wrong. If I’ve learned anything over these years, it’s that I really have to rely on people. Plus, one never knows if the Lyme is truly gone, and a relapse is very common post-partem.

Lyme Disease and Hormones, Part 1

But let’s go back to the beginning. Because of the monthly hormonal fluctuations that women go through, our immune systems change over the course of our menstrual cycles. Sometimes it is stronger. Sometimes weaker. As a result, the Lyme bacteria can get in sync, because it’s growth cycle is also 4-weeks long, and have the perfect opportunity to grow when the woman’s immune environment is less hostile.

I learned about this from a doctor in New Jersey who specializes in auto-immune disorders as well as chronic illnesses like Lyme disease that can alter the immune system. She said that initially I was experiencing Lyme disease flares around my menses. That’s why I had all sorts of non-typical symptoms associated with my periods.

The other thing she told me is that as our bodies fight a slow growing infection, our hormones get totally out of whack as they keep trying to get our immune system functioning. With Lyme disease, the bacteria is simultaneously emitting chemicals to suppress the host’s immune system. The result is that as the top level hormones, like cortisol and insulin, are overproduced, they create a cascade of dysfunction that results in our reproductive hormone cycles getting thrown off.

What it looked like for me was two huge ovarian cysts about 18 months apart, the second one of which burst before I even knew I had it and landed me in an emergency room thinking I was about to lose my appendix. Back then, I had the first signs of Polycystic Ovary Syndrome (PCOS), but my gynecologist didn’t see the characteristic ring of cysts on my ovaries and missed the diagnosis. I ended up on birth control pills for a few months. But they only made things worse and I had my “period” symptoms three weeks a months instead of 2 or 3 days.

I went back to going untreated. A naturopath, whom I saw right after I got diagnosed with Lyme disease and who gave me a 10-page medical history and symptom list to fill out, picked up on the PCOS immediately. He wanted me to take Metformin, a diabetes drug being used in Europe at the time for PCOS. I didn’t take his advice until summer 2009 when my menstrual cycle kept getting longer and I was starting to feel like there was another big cyst forming. A gynecologist sent me for another ultrasound. This time I had the characteristic ring of cysts. So I started Metformin. It took over a year but it seems like my reproductive hormones have gotten back into a normal rhythm. I’m back to the average American set of menstrual symptoms.

Lyme Disease and Hormones, Part 2

The other thing that happened with all the endocrine disorder was that my blood pressure tanked. Initially it was only around my menses, like the time I fainted in a Stop & Shop just north of New Haven, only to wake up with a supposedly congenital heart problem that appeared for the first time at age 26. As my health got worse, I had spells of getting lightheaded when I was stressed or didn’t get enough sleep. Mostly I self-medicated with tons of salt, not realizing what I was doing. I just responded to salt cravings.

Starting when I got sick and stopped being able to walk, I had low blood pressure for several hours every single day. From that time, March 2007, until June 2010, I consumed ungodly amounts of salt to no avail. If I tried to do anything before 1pm or 2pm, the world turned white and I had to get horizontal so I wouldn’t faint. I was constantly nauseated. I lost my balance. It was a nightmare to live that way.

I refused the drug treatments for low blood pressure because they are steroids and I read that steroids suppress the immune system and let the Lyme bacteria grow out of control. But after over 3 years, two doctors told me the same things independently. First, the amount of Florinef I would be taking was not enough to have a significant impact on my immune function. Second, years of really low blood pressure (like 80/50 mmHg if I drank a ton of salt water) was taking a toll on my heart and making my heart problem worse. And finally, all that salt intake isn’t great for my bone density, which was already suffering from lack of exercise.

On Florinef, my life became totally different. Now, I still consume a noticeable amount of salt. A few pickles a day. Salt on everything I eat…except coconut milk ice cream because it melts faster that way! And still, I get my blood pressure taken and it’s only 90/60 mmHg. Well, actually, if I drink 5 glasses of fluids before 11am, it sometimes goes up to as high as 100/70 mmHg. But for the most part, I don’t get faint or dizzy or nauseated from low blood pressure. It requires exceptional conditions, like not enough sleep or too much physical exertion. I’ve regained the first half of each day.

Biological Clock, Part 2

For 3 years in New Haven, I was a parent. My friend and I took care of his sister and got her through high school. I loved her (still do). I loved parenting. I’m not sure I was great at it. I worked way too much for the amount of attention I wanted to give her. Still, I got to be in there with her every night, through homework and band concerts and boys and video games and dinners and movies and laughter. When she went to college, I wanted to do it again, but start with an infant next time, my infant.

By the time I got the Lyme disease diagnosis, I had lost a year of my life. Lost is the right word for someone lying in bed, barely able to move, in extreme pain. Then with the diagnosis, a whole new surge of hopefulness appeared. I might not die from whatever I have. I might not be crippled forever.

Then reality set in. This disease could take years to get over, if I ever get over it.

No.

This was not what I wanted.

Hope

Last summer, right when the Florinef started to take effect, I met someone. Over the next few months, I felt hopeful. I hadn’t liked anyone for a long time. Here was someone I liked. And even though he said he couldn’t get into a serious relationship (not that I was ready for that either), it was clear that he liked me, too.

Hope.

Hope’s about as far as I got. I could tell that hope was helpful to my  healing process. With hope, I agreed to do an art project together (the book I mentioned in a previous post and on my About page). We got to hang out a bunch and get to know each other. I got to write a great poem about Irish Americans, inspired by one of our conversations.

Things got interrupted too soon and too tragically when his son got hit by a car. Now, wherever that relationship was going is gone. Instead I have a friend who lives far away while I am sicker than I was when I knew him. (Remember the fleeting magic of Rocephin.)

In my heart, I’ve adopted my friend’s son. He’s an 11-year-old boy whom I’ve never met. I follow his progress. I read and learn about the treatments he and his family are trying. I get inspired by their absolute commitment to get him back on both feet, walking and running again. It makes me believe that I can get all the way healed, too.

Anyway, if you got this far into my post, you’re either my friend or very interested in what I have to say. If you’re my friend, and you remember how hopeful I was last summer and early autumn, I’m asking you to donate to the fundraiser for my friend’s son, Marcelo. I sent $100 that I don’t really have. Most of you have a lot more to spare than I do and a much weaker connection to this family in Florida, so I’m asking you to do it for me. Even if you don’t know me, $20 goes a long way to paying for physical therapy sessions or high-tech leg braces. And it’s good karma, sending out a prayer for someone with a family that will do everything in their power to fully heal their child.

(It’s awkward to mention money or ask for it, but this time, it’s worth the risk.)

Pregnancy

I don’t know if I’ll ever have or raise children. It’s an open question that many women with Lyme disease deal with. I’ve talked to some of them and shared my thoughts and feelings.

My doctor told me that he’s ushered several women with Lyme disease through relatively healthy pregnancies, given that they were taking antibiotics the whole time and were wiped out afterwards.

I’ve read that women with Lyme disease who are taking antibiotics feel great during their pregnancies, better than they have in years, and crash afterwards into a relapse.

Who knows what’s possible? For me, I don’t want to be this debilitated ever again. Unless I think I’ve cured myself completely, I won’t consider pregnancy. I’ll have to be at least that well to consider parenting even if I’m not the one who gets pregnant. (See also The Pregnancy Question.)

Coiling

I woke up in pain this morning but had some energy. I figured my symptoms were more menstrual than Herxing, and possibly the Lyme bacteria getting active at this time of the month, so I decided to be bold with the coil.

  • Lyme disease, abdomen, 3 minutes
  • Candida, abdomen, 10 minutes

I’ve gone up 30 seconds on the Lyme disease coiling over my abdomen since I last did it on Wednesday. It was no big deal when I did it. But within an hour, I was passed out in a deep sleep for two and a half hours.

I’ve hit my target for Candida: 10 minutes on my abdomen. I’ll do this daily for a week or so before I add in other body parts. So far, the only thing that’s happening is another outbreak of (mostly small) acne. This happened when I started out at 3 minutes then again when I increased to 5 minutes. But really, do I have to get one on the nose the day before I have dinner with a friend I haven’t seen since high school?

Detox

I slacked off yesterday and was filled with good intentions today. Alas, I’ll be lucky to complete my regular routine.

  • homeopathic support
  • kombucha
  • juiced greens
  • skin brushing
  • castor oil pack on my liver

I think I know what Renalin, the new homeopathic remedy, tastes like: semi-sweet chocolate and cinnamon. I’m still working on the smell.

The next thing to add in is lemon in all the water I drink. It’s good for detoxing and for the kidney stone problem. The key is to develop a habit. Right now I can pour myself a glass of water without thinking about it. Now to add in the step where I open the fridge and pull out a lemon…

I usually do the castor oil pack right before bed. That means I’ll be up very late tonight. I guess I’m cashing in on my nap.

Body

Before I went to bed, I noticed that my toes hurt. It was a strange feeling, like this was the extent of the Bartonella Herx from yesterday. I was cold all night. No night sweats. I slept all the way through and was groggy, almost sleep walking when I went to the bathroom during the night.

I woke up in pain but not tired at 10am. (Thank you Punky for delaying your breakfast request.) My feet hurt a lot and tingled a little. My bones felt cold and achy. This was odd because the weather was nice today. My muscles felt crampy. I had a bout of diarrhea in the morning.

Then I had something resembling energy. I could move around and do things, but I didn’t feel energetic. So I did as much as I could around the house and went for a walk to do errands.

After lunch and coiling, I had this notion that I was going to finish cleaning the kitchen and set up my own juicer, then go for another walk and finally compose and send several long emails. Instead, I slept deeply for 2.5 hours and woke up in a daze.

After dinner, I thought I would start today’s blog post, but my mind was still fuzzy for another hour or two, so I finished knitting another baby hat. Then I sat down to write this.

I’m noticing a rebellion in my shoulders and upper back because I’ve typed such a long post. Oh well. Then I’ve had a headache since the 3rd paragraph that has descended into my left eye. My joints are cracking; my hands and feet hurt. I think it’s time to lie down with a castor oil pack.

Disclaimer

12 comments

  1. […] I got my period today. I knew it was coming from the calendar. Happily, the cramps started the same day as my period (not a week in advance) and were fairly mild. I was tired for a bit in the middle of the day and needed to lie down for an hour in the early evening. What a difference from what I used to go through. […]


  2. […] in more than 35 days after the previous one, and it was a horrendous experience, which I’ve previously described. It was getting very light (i.e. not much blood). My acupuncturist was afraid I was going into […]


  3. I find this post to be such an endearing, invigorating read. I keep coming back to reread it. It really paints a picture of your character. You’ve experienced and explored and conquered plenty, seemingly more than the average person. I am humbled by your tenacity to remain hopeful and desire to live the biggest, fullest life possible. Thank you for your generosity and your wit. Your decision to share a piece of yourself and your world is a gift to many.


  4. I have just discovered I have Lyme’s and our three year old has also had health issues (we haven’t checked him yet, although it is likely he also has it.) Your statement about pregnant women struck a chord with me…have you heard of other stories where women became worse with Lyme’s after being pregnant or during? I would love to hear more, this may be the answer I have been searching for…thanks!!


  5. […] pain from my waist to my toes for the first 48 hours. reportedly, due to hormonal cycling, the spirochetes can sync with menses. the life cycle of borrelia burgdorferi is about 4 weeks and while my immune resistance is lowered, […]


  6. You sound like you have POTS (postural orthostatic tachycardia syndrome). In fact I would be willing to bet money on it. I have met several people who have Lyme and pots. Lyme can cause pots and is actually quite likely especially for young females. Go see a cardiologist who knows about pots and get them to prescribe midodrine(will raise bp) & florinef ( this is a different group of steroids from the one that affects immune system). Both together work wonders!


    • Thanks, J. I saw a cardiologist for several years. I did take florinef for over a year until I started getting fungal infections. Florinef does, in fact, suppress immune function in a very specific way, particularly how the immune system fights fungi. All of these drugs that treat things like POTS are helpful in the short term, but the most important issue is to get rid of the underlying Lyme infection. As my Lyme infection has been reduced, many of my symptoms have diminished as well, and when the Lyme flares, these symptoms come back.


  7. I have so many illnesses (Hashimoto’s thyroiditis, endometriosis, fibromyalgia, allergies, and now the Lyme) that I decided not to have kids. Most of my illnesses started before the Lyme. I just didn’t feel like giving my genes to some unlucky child, and I also didn’t want to pass the Lyme infection to a baby. However,
    now that I’m in my 40s, I’m definitely sad that I didn’t have kids.


    • Dear Miss Diagnoses,
      Thank you for your thoughts. I just turned 39. I’ve been thinking about what it is going to take for me to get rid of these infections in time to make a sane decision about having a child. I’m full of urgency and, sometimes, despair, about being well again. The urgency fuels my drive to find smart ways to use the coil machine to get at the root of the infections and get rid of them. The despair makes me slow down and try to make my life go well in the meantime. Chronic illnesses make life very difficult and force us to stray from the dreams we once had.
      I hope that you are on a path towards health and that you have other dreams you get to fulfill.

      Yours,
      Rose


  8. Thank you rose , i too am worried i passed it to my only daughter…my gf always flares around that time of the month. Thanks for sharing your art your pain and your fight..


  9. Lymes hides in scar tissue, I put (therapeutic grade) frankincense oil where I knew I had tissue damage. Frankinsence is antimicrobial and heals scar tissue. Also I took sarsaparilla root to counteract the Herxheimer’s reaction. I hope this helps someone. It helped me get completely better B’H I know a lot of people think that’s impossible, but it’s not.



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