Saturday, June 20, 2009

The medical report

I saw my LLMD last week. I reported to him that, over the past few weeks, I'd seen slight improvement. Nothing dramatic, but I'd gone from my baseline of "20% of normal" to something like "25 - 30% of normal." (Where normal = pre-Lyme.) I had a little more energy (minus the four o'clocks), and I'd been able to read three whole books! A miracle!

Dr. R says that this is a really good sign. Generally speaking, he says that 30% of patients see some improvement after 3 months of treatment, 60% after 6 months, and 90% after 9 months. I'm right at the 9 month mark of treatment.

So since I'm feeling better, it's time to ramp up the treatment. It's a roller coaster--you treat, get worse, get better, and then increase treatment so you feel worse, then better, so you can increase treatment again.

So here are the changes to my treatment and other bits of news from my appointment:

1) Heavy metals testing. Got the results back. I have elevated lead levels--not surprising since I grew up next to a lead-mine-turned-Superfund-site--but not elevated enough that he thinks we have to specifically address it. This makes me nervous...I don't like the idea of elevated lead in my body, but I figure I'll address that concern after I make it a little further along the path towards wellness.

2) The four o'clocks. Dr. R suspects that this is a sign that my adrenals are still not functioning correctly. I've been taking ashwagandha, but it's not quite enough. So I've started taking 5 mg of hydrocortisone in the afternoon. While steroids are generally very bad for Lyme patients, I'm taking a very small dose that is only making up the difference between what my body should be producing and what it actually is. I've been taking this for a week now, and it's made the four o'clocks a little more bearable.

3) Viral infections. Remember a long time ago when I said I had high EBV and HHV6 titers? And that those chronic/reactivated viruses might have a role in why I was so sick? And that we hoped with Lyme treatment, my immune system would get strong enough to fight them down on its own? Well, given my relatively slow progress, it's becoming more likely that the viruses aren't going anywhere. So I've started an herbal antiviral, monolaurin. I'm supposed to ramp up the dosage over the next two weeks, depending on how I'm feeling.

Conclusion: My appointment was last week. I've been on the new meds since then. I think that the monolaurin might be causing die-off, or I'm just back in another Lyme die-off cycle. Because after feeling just a teensy bit better for a few weeks, I'm sliding back downhill.

The physical exhaustion is nausea-inducing. I have no stamina, and my cognitive abilities are slipping. Reading is harder. (So glad to have audiobooks.) Writing is harder. (So glad to have spellcheck.) Concentration is harder, and there's nothing that really helps with that.

So it kind of sucks right now. But I've been sicker than this before. And I made it back up the hill. So I'm trying to remember that. I'm sliding down, but I'll climb back up again. I hope.


  1. Hi. Don't know if you remember me, but I'm the guy from Bellingham who talked to you on the phone last year after you responded to my posting on one of the lyme boards.

    It was a big help to talk with you then, so thanks. I've been following your blog, and my heart really goes out to you that you're still feeling so bad.

    I thought I'd contact you because I'm feeling considerably better these days. (Knock on wood that it keeps up!) It's been a slow winding road, but in the end I decided not to pursue the lyme diagnosis/treatment until I had exhausted other possibilities, and I'm glad I made that decision.

    This may be the last thing you want to hear right now, since your health is in the hands of Dr. R, but if you're interested in hearing how things have played out for me, I'd be happy to talk or exchange emails. Maybe some part of my experiences could help? And I've had some eye-opening conversations about lyme with both sufferers and doctors of all stripes since talking with you.

    I can't find your email though, so plz email me at scholtz (at-symbol-thingy) if you want to talk.

    Wishing you strength!


  2. Hi, I am glad to have found your blog. Informative AND entertaining. How do you stay so funny with this disease? I too have Lyme disease and we have a lot in common although you probably can't tell from my blog:
    Feel free to email if you so desire:
    susan (symbol at thing)

  3. Hugs from a stranger who loves your ice cream recipes!

    I think your 4:00s are fascinating. I crash around 5-6pm; might be adrenal related. I'm still waiting on testing toward a diagnosis.

    Kathy in MD