OT: resource for explaining Lyme, a Q&A

[Guest guest]

Hi all, I had an eye-opening conversation last week with my boyfriend's mother, whom I thought had been understanding the Lyme disease all along. She said that she thought I had simply become " stalled " in life and that living with my boyfriend has kept me from moving on in life. Presumably to make me feel better about it, said that it was just like when she had a hard time getting back into the workforce after having children.

It was a shock to me that she thought this. Perhaps hearing that I'm now using only the Rife machine and no antibiotics made her think I must not be sick, I must just be unmotivated, if whatever I have can be treated by something that " obviously " doesn't do anything.

>>Has this happened to anyone else--that people suddenly reveal that they aren't on the same page as you, as you thought they were: instead, they've been thinking all along that you aren't sick, you're just depressed, unmotivated, hypochondriac, etc.?

I was really sad about it for days, but I decided that the reason it was bothering me so much is that my boyfriend's parents are important to me, and they can have a positive or negative effect on our relationship, so I want them to be on my side.

I wrote the following Q & A email to them. Feel free to copy and edit for your own use. I'll wait to see what they say back, but I feel better just writing it, since I feel like I was able to tell my side of the story.

-- - -Dear Mr. and Mrs. __:I would like to have a good relationship with you. I think you are great people and you are [my boyfriend]'s parents. I realize you probably have a lot of concerns about me that could get in the way of you feeling good about me dating your son, just as a consequence of what I have been dealt in life.

I am happy to address any concerns you may have. Please do bring them up with me. I have anticipated some here:Q: Is chronic Lyme disease real? A: That would take a long time to discuss, but see the Primary Care Brochure on this page for a summary: http://www.ilads.org/lyme_disease/lyme_brochures.html. I can see that doubting whether chronic Lyme exists could cause you to doubt everything I say below and to doubt my character and sanity, so let me know if you have further questions about its existence.

Q: Do you have these infections you claim to have or are you just making it up?A: I have elevated antibody titers for Babesiosis and Bartonellosis and I had more than enough positive Lyme tests to achieve a diagnosis according to the most stringent criteria.

Q: You seem fine, we know people who have continued their lives while sick, why are you using Lyme disease as an excuse not to go on with your life?A: I have been hit very hard by it. I contracted at least three tick-borne infections at once, compared to some patients who have only Lyme, and the more infections patients get, the sicker they are and the longer it takes them to recover.

Q: It seems fishy that you " came down with " Lyme right after graduating from college. Doesn't this mean that you wanted it as an excuse not to have to be an adult?A: My life was going great when I came down with Lyme. I had just received excellent grades in my pre-med courses at Harvard Extension school, I had two jobs I enjoyed including a summer research position at Harvard, and I had great plans for my life including applying to biology graduate schools and naturopathic schools that fall. The last thing I wanted was to be slowed down by illness.

Q: You've been saying your health has not been good the whole time we've known you. Are you just a hypochondriac or do you like being sick? A: My health went downhill over the course of many years, starting when I was anorexic as a teenager. I kept going in the face of fatigue until Lyme disease knocked me over and I finally had to turn my attention to my health. Having pre-existing health problems (such as adrenal insufficiency, hypothyroidism, and fatigue) likely made harder to beat the Lyme disease and other tick-borne diseases.

Q: Is chronic Lyme curable? A: Not always. It takes many patients years of work to get back to 90%. If it took me 7-9 years to develop my particular health situation, and it takes a few years to undo the damage. I have been excited recently to have occasional glimpses of what my brain and body haven't felt like since I was a teenager. I think I will be able to recover rather fully.

Q: What is this " herxing " or Herxheimer reaction you mention?A: It is a reaction to successful treatment. Some of the tick-borne diseases cause an intense immune reaction when they die and spill their bacterial endotoxins. This die-off reaction can last for months. It is like being poisoned from the inside every day and it makes me feel very sick and terrible, like the worst cold and pain ever, but every day. It's like chemotherapy: you have to feel very bad in order to get better.

If I seem to be really happy and directed some of the time and then to lose my motivation and stop what I was doing a few months later, it's because I was not herxing in the first case, and I was in the second.

You might think " herxing " is just a negative reaction to treatment, not to bacterial die-off, but that's countered by the observation that I " herx " from a given treatment only for the first few weeks or months, after which the treatment no longer gives me any herxing since it has killed everything it can. If I were having a reaction to the antibiotics, you'd expect my reaction to get worse as time went on (as it has for a drug to which I became sensitive).

Q: Did you have only a mild case of Lyme disease? We know people who were in wheelchairs. You look fine.A: My nervous system and brain have been very affected, as you have been able to observe, and I've also had a lot of invisible symptoms including air hunger, constant bone pain, tinnitus, headaches, nausea, difficulty breathing, persistent sore throat, vision problems, muscle pain, chills, sweats.

Q: If you've been so sick, how have you gone on these trips with ?A: It's hard. I am very tired during the trips. I plan my treatment around them so that I don't feel too bad at the time. I do it for so that my being sick does not keep us from having fun.

Q: Why aren't you working now or at least making progress in planning some career? A: The treatment I am doing now with the intense magnetic fields (the doug coil machine) is very time consuming and takes me several hours a day to administer since the coil must cool down between sessions. More importantly, the herxing (and the symptoms of new infections that come up) make me feel very sick and fatigued. This is the time for me to focus on making progress on my health.

I call it the " Surge " : I am trying to do everything right for a few months: intense treatment, good nutrition and sleep, meditation, yoga, and physical therapy so that I can get over the hump and reach a new plateau.

Q: I believed you were sick until I heard that you were being treated by this fishy magnetic machine that doctors can't use. You must not be sick if you claim you're being helped by something that obviously doesn't work.

A: and I went through the same reaction. Lots of patients use these " doug coil " machines to treat Lyme disease and claim success, but we avoided looking into them for two years because they seemed so kooky.

However, once I saw that I would just relapse with renewed infection symptoms after stopping antibiotics, I decided to try the doug coil machine.This treatment has been very effective and it gives me the same Herxheimer reactions that antibiotics do, suggesting that it kills bacteria just as well but in a different way.

has also been impressed with how well it works and how much progress I am making with it, even on objectively observable symptoms like rashes and night sweats (suggesting it's not just a placebo effect). The experience has been an education for us: sometimes things work even when you don't know how they could work.

Q: If you're making progress, as you claim, then why are you still sick and not doing anything with your life? says you are over the Lyme disease. A: Getting better from tick-borne diseases is like peeling an onion. Bacteria inhibit the growth of other bacteria, so patients find that once you push back the most prominent infection, another one starts to give you a completely new set of problems. Some people compare it to the " whack a mole " game. There are a few cycles of this before you start not having new things pop up.

Q: Do you have any career plans? It's worrisome that you still seem not to know what you want to do at 25.A: I think the problem is that I still have slight cognitive deficits and it's hard for me to think on my feet when we meet up. Also, it's hard to present a long-term plan when I'm usually asked " What have you been doing/what is new? " and usually all that is new except treatment is new interests or ideas about what I might do later, so I end up seeming scattered.

I have had a plan on the back burner for a few years that I think will work very well: being a therapist and a writer. I can get started on the writing even while sick, as I have done during times when I was not herxing, writing increasingly professional pieces. It should not be hard to pursue a degree in some sort of counseling, since there are many options for these degrees.

I would like to specialize in helping couples affected by chronic illness. I am in contact with someone who does this in Canada, and she says it's rewarding and she has plenty of demand for her services. I also know therapists and psychologists in CT and MA who work with Lyme disease patients and their families. I also have at least two books I would like to write on these topics, and being a professional working with patients would help me in getting book contracts.

I already get dozens emails from people saying not just that they like my writing but that it has helped them. I think what I have been through will make me even better at the careers above. I'm not looking for approval of this career: it's not as shiny as what your sons do, but I just don't want you to worry that I'm totally unclear about what I want to do.

Q: Why do you say weird stuff when we are together. It seems like you don't always think before you say things. Will you be able to throw the proverbial " dinner parties " if you are married to ?

A: It's unfortunate, but I have had multiple cognitive deficits from Lyme disease, including decreased frustration tolerance, poor impulse control, and trouble thinking under pressure, which have contributed to my saying things in ways I wish I hadn't. These symptoms get worse when I am in the middle of herxing, but on average they are getting much better and I do not expect that any of them will bother me much longer. Just in the past week or two as treatment progresses, I am much more able to make small talk, something that used to elude me. I think I will be fine in this regard. I can dress up and look nice, too, when I have the money and the energy.

Q: Are you good for ? We worry that it's too hard on him to date someone who is sick. A: We have a lot in common and we are best friends, and he tells me he would still choose to date me if he met me now.

I try to keep things as normal for him as possible. Except for the irritability and depression, which are going away as I treat the particular infection that caused those, I have tried to make things not much different than if I were, say, in medical school or law school. I do not ask for him to do much for me, but sometimes he carries my groceries and now we share the housework instead of my doing most of it myself.

Q: I hate to say this, but do you just have anxiety or depression? That's what it looks like to me. That could explain everything you have described above.A: I have had depression, anxiety, and irritability as a result of the infections and the psychological symptoms go away as I treat the infections. I had far worse depression in the past than I have had more recently, and it never caused me physical symptoms.

I have tried various antidepressants while I've had Lyme disease and have had negative reactions (hives, paradoxical reactions) to all of them, which is common for Lyme patients. Lyme patients are different, and we don't always tolerate or benefit from medications that work for healthier people.

I see a therapist, I meditate, I do yoga, and I have the CBT book and CBT workbook. I am applying to the Relaxation Response Resiliency Program at MGH now that my pain is low enough that I can tolerate meditating. I know I have secondary psychiatric problems but they are not the cause of my physical symptoms.

Q: Will you have difficulty getting back into the " real world " after being sick?I am aware that it might be difficult for some people to get back into things after being sick. I don't think this will be a problem for me, since I am a very hard-working and motivated person, and on the occasions when I have started to feel normal and healthy again (when not herxing), I immediately started applying for jobs, I acquired business clothes, I started scheduling informational interviews and updating my resume, etc. Not working is a drag, and I can't wait til I can work.

I even have it planned out how to make the transition gradually as I recover: any time I start to feel up to it, I work on increasingly serious articles and my book, more and more professional than the casual writing here or on my blog. This way I can start being involved in the professional world through magazine articles and contacting publishers even when too tired to work out of the home, and I'll build up a set of clips to help me in my writing career, so that I'll already have the writing going when I am able start pursuing an additional career, e.g. in graduate school.

Q: Do you need encouragement from us to get back into doing the impressive things we know you can do?A: I would appreciate encouragement to do what is right for me. Right now, what is right for me is doing a good job on my treatment, to get over these health problems for good so that I do not continue to be impaired by them.

I am grateful for any encouragement and compliments people can give me about what I am already doing and I appreciate those you have given me over the years. Sick people often lack for compliments, because people rarely think to compliment people whose lives don't seem to be going well, even if the people are doing an excellent job nonetheless.

I think that not only was I impressive when I won awards and ran a marathon and published papers years ago, but I am impressive now in how well I do my treatment: discipline, research, keeping records, sticking to it day after day although it's tedious, sticking to the diet my doctor prescribed, dealing with the symptoms without complaining, going through treatment even though it makes me feel worse, and taking care of myself because no one in my life is able to quit work in order to take care of me.

I'm aware that from the outside, I might look like I have my life all wrong. Different people think I am: depressed, burnt out, borderline, hypochondriac, have lost my drive, misguided, etc. However, on the inside, I know that I am doing a great job at what is right for me, and I'm working just as hard on the right things as at any other time in my life.

Q: Do you notice how accepting and supportive we have been?A: Yes!!! I know that you could have encouraged to break up with me, you could have totally disbelieved me and scoffed at the chronic Lyme thing, you could be very rude and it would be totally forgivable because of the unfortunate controversy about chronic Lyme disease, but instead you have been very supportive and understanding and I truly appreciate it. I think you are really good, kind people.

I am sorry if I have been remiss in sharing important information about my situation with Lyme disease with you. There's a long learning curve for coming to understand my illness that my family and have gone through. You might already be there, or you might not want to make the trip, but feel free to contact any of them if you want to see that other rational, sane people believe me and agree with me. It's hard to understand at first, but I think been an eye-opening experience for all of us.

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