Getting better from Lyme is like .... ?

It feels to me like getting better from a chronic, multi-system illness like Lyme disease is like slowly extracting yourself from a bunch of tar or pit of quicksand.

Once you're in, you can't move very quickly, and the natural equilibrium would be to stay in this situation indefinitely, but you have to use calculated efforts in order to get one limb out at a time. Each limb that's out aids your efforts to get the other limbs out.

I imagine that when you finally get out of it, you look back at the pit you came out of and say, "Never again!" (not that it was your choice to fall into it anyways) But I'm not to that point yet.

However the occasional clarity or energy I feel, such as this morning when taking Ceftin (I missed my regular dose of Bicillin due to having a bad cold--I've learned my lesson about going places when I'm too exhausted to do so), makes me think that finally getting out of the hole will be wonderful.

We battle against the hole with antibiotics, herbs, and force of will. It's a prolonged, difficult battle, particularly since (as someone has said) the enemy has outposts in your brain. I think it has something in common with having kids, since it's a huge, 24/7 challenge, and you just have to rise to the occasion.

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Medical school and adrenal stress

Does going through medical school make you less healthy?

"Physicians on average die 10 years younger and have higher rates of alcoholism than the normal population. Medical students typically go directly to medical school from an undergraduate program. At the end of four years of study, they become residents in a specialized area of study, work between 80 and 110 hours a week, occasionally under a great amount of pressure from superior students. Although this is a generalization and not true for every doctor, it is a description that fits many medical students."

--Adrenal Fatigue

This is the main reason I do not want to go to traditional medical school. I already have adrenal fatigue. I don't have much adrenal function left to spend on becoming a doctor.

Something is wrong with a system that makes doctors so unhealthy. Why?! Shouldn't doctors be an example of taking care of their bodies, getting enough sleep, and not overworking?

I hear that naturopathic medical students are taught to do this, and they at least try. "Physician Heal Thyself/practice what you preach" is a required course in the naturopathic curriculum. One ND I saw said most students in his school (Bastyr) used adaptogens (herbs that help the body cope with stress).

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Lyme disease is not a property of a person but rather a situation

It's important to keep in mind that Lyme disease, fatigue, etc. could happen to anyone.

Disease and fatigue is not something about us. It's just a situation we are in.

Sometimes I catch a sense that the "ill" are just another type of people, they have fewer rights, they can't expect as much, they aren't as good, they aren't as fun to be around, and they are just in a different class than the healthy, particularly since some illnesses have profound effects on personality, behavior, motivation, and other things that we wrongly assume to be 100% a person's choice.

But really, any health person could come over to our side in a matter of months or even days.

When I'm at the Tufts Medical Center to see my doctor, I see many medical students my age in the hallways. I want to tell them, "You're lucky. If things had gone differently we might be in opposite positions."

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Lyme disease: a catalyst for personal growth?

Due to some particularities of this disease (the complete failure of regular medicine to diagnose and treat it adequately, the brain symptoms, the fatigue and the way it affects most body systems and organs), I think having Lyme disease requires or at least stimulates patients to overcome any emotional or developmental gaps they might have.

If you are not assertive enough, you'll have to learn to be assertive in order to get treatment. (Granted, I know this is a subjective judgment against a non-existent standard, and I'd prefer not to think that a person can be 'not assertive enough', but just assume this for the purposes of this post.)

If you are "too giving and do too much for other people," you'll have to learn to take care of yourself and perhaps to do less for others.

If you have a chronic emotional issue that causes you to feel bad, you're probably going to have to address it.

In my own case, I struggle with excessive guilt. Whereas it used to be a nuisance but not anything I couldn't live with; now the guilt interacts with my low levels of emotional regulation with sometimes catastrophic results. So I am forced to tackle this issue, whereas I might have gone another decade without addressing it had I not contracted Lyme disease.

If you pick too many fights, you have to learn not to. I've had to learn to drop a lot of arguments and just to let the little things slide, because with my Lyme-induced tendency toward anger, I would be angry all the time if I pursued everything that upset me.

If you aren't appreciative enough, you'll have to learn to thank people for what they do for you, because you're going to need a lot of help and support from others.

In general, it's my feeling that Lyme disease takes whatever emotional or behavioral problems a person might have and makes them SO BAD that the person has no choice but to address them.

Has anyone else experienced this? If so, please comment!

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When things don't go your way, you learn and grow

I've mentioned this before, but I was reminded of it again this past weekend, which was very hard in terms of physical and mental symptoms.

When things don't go your way, sometimes it ends up being good, because then you end up doing things you wouldn't have done otherwise.

If things go your way, then you just go down the little path you've plotted out for yourself, and nothing interesting happens because you just do and get what you are expecting. You aren't exposed to anything truly new, because any "new" things you do or see are of your choosing.

However, if things go wrong or just don't go your way, then:
-You have to learn new skills to cope.
-You might be introduced to something you didn't know about before.
-In general, your life gets mixed up a bit and you experience something new.
-You might learn about new things that you enjoy.

Some examples from my life:

-On days when things are really terrible, I find myself really enjoying just looking at things around me, like the shadows on a bag or the pleasing slant of a vase. When my life is unhappy and not especially pleasurable, then the little pleasures from looking at beautiful things can stand out and I can notice how much I enjoy looking at things like this.

-Fatigue might cut down on how much I do certain things that I enjoy (dancing, cooking, running, reading). However it has introduced me to new enjoyments: watching movies and TV series online, listening to popular music, watching TLC and the Travel Channel, stretching for mild exercise, etc.

-I am sort of isolated by being tired, but on the other hand it's a great skill to learn--how to be happy by yourself, and I've become very good at it.


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Careers and Fatigue

I was thinking about careers again today, as I often do.

I'm realizing that it's very hard for me to decide what I want to do for a career while I'm this tired and this caught up in Lyme disease treatment.

Whenever I imagine doing the work involved in a career, I freeze up and think, I couldn't do that--not with this body or this hypothalamic-pituitary axis! So I end up dismissing a lot of careers that I might in fact be able to do when I am better.

Fatigue can really mess up your preferences and your learning about yourself, since it skews what you want to do toward things that take less energy. This is why, for years, it's seemed like I wanted to do for a career was: 1) get my body back into working order, 2) do nothing, not work or 3) be a barista or work at some low-level job (but now even these jobs are too fatiguing--I can't stand up still for more than a few seconds at a time--dysautonomia).

The last time when I was really not fatigued, what did I want to do? It was in 2003, and I wanted to do biomedical research, maybe ethnopharmacology, primate anthropology, neuropsych-pharmacology, or animal behavior. I enjoyed field research but I wasn't so sure about going into a field (animal behavior) with so little

Man, it was so great when I used to have respectable interests and desires. I was truly interested in this research. Now, what truly interests me is rest and medical care.

I guess I see that what I've always, always liked is saying what I think, thinking my own way, disagreeing with the status quo, and proposing new ideas and paradigms. I guess you can do that as a writer. I just read Bonjour Laziness by Corinne Maier, and she does exactly what I like doing--she shows a topic in a new light and pokes fun at the current paradigm of business. Yeah, I will have to see how I might be able to do this, because this is just what I like doing.

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A cold forced me to rest - I should do this more often!

I have been in bed most of the day because I have a cold in addition to the usual tick-borne infections.

It has been wonderful resting!

My bone pain is not very bad today compared with most days. Maybe the resting has helped? Maybe I have less inflammation when I am resting? I do notice that stress and negative emotions tend to make my pain feel worse.

It took this sickness to put me in bed; up until today, I've been doing a lot most days. Even yesterday when I felt sick, I had several things to do--an appointment, a Bicillin shot, couples therapy, grocery shopping. Doing all these things while extremely tired made me want a rest, so I made it a point to rest today.

It's good that I had the opportunity to rest. It makes me realize that I should do this much more often.

I don't want to be bed-ridden, so I need to stay moderately active, but I just need to cut back on what I expect of myself. I've been trying to do way too much. I would prefer to rest during the day, maybe do some light exercise in the morning when I am most able to exercise, and then maybe see friends at night; instead of spending the whole day doing strenuous errands, cleaning, laundry, cooking, phone calls (yes, important phone calls can be tiring!), etc.


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Sex while Fatigued or with Lyme disease

I haven't been able to find many suggestions online so I will try to write something about it myself.

How to have sex when one or both partners have long-term fatigue, Lyme disease, etc.

Of course, it depends on the individual's symptoms. But in general, I think the following might help:

-Spend more time on relaxing, low-energy activities. Give the person a backrub, gentle stroking, or massaging.

-Take a bath together for pain relief, relaxation, etc. Aromatherapy is a great idea.

-Try still and low-motion methods of connecting, such as spooning and holding each other.

-Getting aroused requires hormones and energy. Keep this part on the shorter side since it can be tiring.

-Find activites that don't require much exertion from the fatigued person.

This goes for short illnesses too - or anything that decreases a person's energy or mobility.

The other side of the coin is that you can use your partner's decreased ability for sex as an opportunity to explore not-strictly-sexual forms of physical connection. I remember a study about how partners who gave each other non-sexual physical touch, like massages, were happier together.

If the person has pain and fatigue, sex might be a bit tiring; however, touching in a more relaxed way, as in massage or general touch, could actually relieve symptoms, increase endorphins, and help the two of you to stay close.

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What would a Lyme-sane world look like? What are we aiming for?

Damn, I'm having that symptom again where I can't remember what I was just thinking about it.

1) Oh, I should write a post about that.
2) Click over to this blog.
3) Man, what the hell was it that I wanted to write about? Ok now I recall.



Here's the post:

Last night, my boyfriend was saying that hopefully in a few years, maybe a decade, medicine will understand and respect these tick-borne illnesses.

The research is certainly developing, despite lack of funding for the real research. A few people are getting grants from Turn the Corner Foundation for good Lyme research, and then there's also good research on the other tick-borne infections. Also there is good research coming from countries besides the US. So although the pace is slow, we are making it somewhere.

I am so encouraged by the amazing research that Ed Breitschwerdt's team is doing at North Carolina State University. It is so good to get this information on the prevalence, diagnosis, and treatment of bartonellosis. If there's one disease that's close to my heart (perhaps literally, as well) right now, it's bartonellosis, since it is under-appreciated, under-diagnosed, and completely awful to have, especially given the violent and tendencies that it can engender. The world would really benefit from better Bartonella diagnosis and treatment.

Anyways, I can't wait until these things are mainstream and accepted. I do what I can to inform people I meet. In the course of doctor's appointments, I inform doctors of things confidently, e.g. "Oh, yes, the recent research shows that Bartonella can be a chronic infection even in the immunocompetent. B. henselae can cause a variety of serious symptoms. Oh, and it is transmitted by ticks and certain other arthropods." It really helps me to be more confident when I talk with them if I have kept up on the research myself. The doctors seem to trust me, whereas they won't trust me if I say I read something on the internet--if there is a question, I have to make clear that these are peer-reviewed articles in good journals.

Looking back at the early 2000s, maybe doctors of the future will think, "I can't believe they ignored tick-borne and other vector-borne infections. These have been an epidemic all over the country, and they just missed it, and all those people went undiagnosed. And it's one of the major things we treat now, along with cancer and heart disease."

What would sane approach look like?

-Millions or billions of dollars to research vector-borne infections.
-Research on controlling the transmission of these infections.
-Preventative measures, if not vaccines then routine testing for people who are exposed to animals, arthropods, or who live in endemic areas.
-Development of far more sensitive testing methods.
-Research on how to treat multiple infections at once (is this even in the literature--what to do if a patient has bartonellosis and Lyme disease and babesiosis at the same time?)
-Insurance coverage of as much treatment as is necessary.
-Psychiatrists recognizing the scope of tick-borne illness mental symptoms and referring all patients with confusing symptoms for tick-borne illness testing.
-Good disability coverage for tick-borne illness.


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"Serious" relationship problems solved easily in couples therapy

In couples therapy, many things that one might think would be terrible relationship issues that might be even a good reason to leave someone, ... become clear and stunningly easy to solve (and they do actually get solved). It's amazing what some perspective and some simple tools can do.

Also, I notice that what seemed like serious relationship problems have been solved quite easily (often in under 10 minutes, and then from then on, having had the conversation, we remember to use the new protocol we have learned and practiced).

This is why I don't give much credence to those ideas about, "Well, if he/she does or doesn't do X, or __," you should just leave them. Who knows--these problems that seem so terrible (e.g. he never helps me) might have an easy solution (e.g. ask for help).

I also note that it's extremely difficult to get a clear sense of what a relationship is like or how someone behaves in a relationship by listening to only one side. You need to hear both people's stories, and you need to see how things work in context, as a couples therapist can do.

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