Saturday, October 17, 2009

The Scorecard

A friend of mine recently commented that it sounds like I'm increasing the intensity of my treatment, but I just keep feeling worse. He asked for a more nuanced report, a scorecard for what's improving and what's not. I'd been meaning to do just that for some time, so here we go. I also saw my LLMD yesterday, so I have test results and new meds to discuss.

Before I begin, I want to note that it's really difficult to tell what's causing what. I've got a few infectious diseases, each with their own set of complex symptoms. Often these diseases can cause hormonal dysfunction and other self-reinforcing problems in the body. And I'm on a ton of medications and supplements, which have their own side effects. So it's not easy to pinpoint the cause of any one individual symptom.

Part 1: The Diseases

Anyway, moving on to neuroborreliosis, or neurologic Lyme disease. (Neuroborreliosis sounds much more impressive, no?) This is a nasty infection. The bacteria are, we think, primarily concentrated in my central nervous system. I have bugs in my brain.

The bacteria that causes Lyme, Borrelia burgdorferi, or Bb, is an amazingly complex little bugger. It's a spirochete, a corkscrew-shaped bacteria. However, it has the ability to penetrate cell walls and hang out inside your cells. This is the intracellular form. And if that weren't enough, it can also transform into a protected cyst. So if you have one antibiotic that starts to kill the spirochete, it's all, like, "Oh noes! Let's go hide!" And the bacteria go intracellular or morph into cysts. Then say you add an antibiotic that can kill the intracellular form. "Oh noes! This sux!" say the bacteria, and they all curl up in to cysts. So you have to add another antibiotic that can kill the cyst form.

I am currently taking IV Rocephin to kill spirochetes, plus oral minocycline for intracellular Bb and oral metranidizole (Flagyl) for the cyst form.

Great! I'm killing bacteria! But wait! Kind of like a vengeful ex-lover who takes a razor to your couch cushions before moving out, as the bacteria die they release toxins. Also, your immune system detects the dead bacteria in your blood and is all, "OMG! What are you?! Time for immune reaction!!! Cytokine attack!" And then you feel even worse than you did before you started killing bacteria. This what I'm talking about when I say I'm having a herx or "die-off" reaction. ("Herx" is short for Herxheimer reaction.)

But wait, you say, how can I tell if the reaction is a herx, side effects from the drugs, or just a symptom flare? This is a major frustration. It can be difficult to discern if you're feeling horrible because you're making progress, or if you're just feeling horrible because you're sick--or some combination of both! Because I don't have enough ironic absurdity in my life.

Bartonella. Hey, remember back in the spring when I said that I was done treating bartonella? Because after trying out Rifampin and Bactrim, I finally did a three-month course of Levaquin, which is generally accepted to be the best way to kill bartonella? Well, given my slow improvement in symptoms I'd attributed to Lyme, my LLMD suggested that we do a blood smear test at Fry Laboratories, just to make sure that the bartonella was gone. Dead, buried, not making a sequel.

Perhaps my bartonella infection drew inspiration from Friday the 13th Parts II - X, because we're coming back for the sequel! The supposedly dead killer comes back for one final scare! (Little Scream reference, since Halloween is coming up.)

The blood smear showed (what we are pretty sure is) happy little bartonella bacteria in my blood. Levaquin = FAIL. So now we're moving on to Cipro. I really hope it does the trick, because I don't want to wait around to fight cyborg bartonella in space. (Surely I'm not the only person who saw Jason X? Right?)

Enough horror movie jokes. Moving on to the viruses. I know that I have elevated Epstein-Barr Virus (EBV) and HHV-6 titers. This is common in people with Lyme (and chronic fatigue syndrome). Most people are walking around with these viruses, happily coexisting. However, my immune system is too weak to keep them in check.

Once the Lyme and bartonella are beaten down, the hope is that my immune system will be able to fight off the viruses. However, because my treatment has been bogged down and slow (by my standards), I'm also taking an herbal antiviral called monolaurin. (There are prescription anti-virals, but they are really expensive and there's no way my insurance company would approve them.)

Part 2: The Symptoms

I should probably divide my symptoms into two groups: major and minor. Major symptoms are the ones that I really hate and the minor ones are just annoying. This doesn't mean that the minor symptoms are less severe than the major ones. It just means that I, personally, can tolerate them better. For example, cognitive deficits bother me much more than physical pain. Even fairly severe pain is less intolerable to me than my milder cognitive issues.

I should also note that not all of these symptoms are with me every day. There are good days and bad days, and I can never predict what's going to come up on the Wheel of Symptoms. It's like a grab bag at a fundraiser a primary school in Hell.

Major symptoms

Fatigue. Crushing fatigue. In the early days of my illness, I went from someone who could easily go on 15-mile day hikes to someone who had difficulty walking around the block. If 100% represents my energy level pre-Lyme, then I'd say that I'm generally running at around 20%. Some days it goes down to 5 - 10%. During the highest point of my treatment, I got up to 30 - 35% of normal. At which point, I was doing well enough to add in more drugs, which knocked me back down. (See herxing, above.)

Short-term memory loss. I forget things. I'll ask someone a question, then ask it again in three minutes. This has gotten a little better with treatment. I don't get lost in the grocery store (much) anymore.

Word-finding difficulty and grammar problems. You can't tell this from my blog, because when I'm blogging I can edit. I use spellcheck. So you don't see all the mistakes. But I often forget basic words. Like "washing machine" or "car." I conjugate verbs incorrectly. When I write, my spelling is terrible. I mix up simple things like their/there/they're, plane/plain, break/brake. Considering that I'm an English major from a highly regarded college and I used to be a professional copyeditor, this is significant.

Concentration and complex (and not-so-complex) thought. It's really hard to concentrate on anything for more than a few minutes. After that, the information starts to swirl and blur and I can't keep it all in my head. Making complex decisions is right out. Simple decisions can also be a problem. Nick will ask, "Do you want your blue shirt or your red one?" And it's like he's asked me to explain string theory in five words or less. I just don't know the answer.

Reading. Reading is still difficult for me. However, one year ago it was nearly impossible. I'd stare at the words on the page, but they just wouldn't connect into meaningful sentences and paragraphs. I could digest maybe a page at a time. This has been where I've seen my biggest improvement. I can read books now! Sure, they're silly mystery novels (and sometimes even that is challenging), but they're whole books. I've even managed to read one or two short-but-complicated medical articles. Progress!!!

Brain fog. The name is pretty descriptive. Foggy, slow thinking. Kind of like how your brain slows down when you have the flu and everything kind of seems like it's underwater.

Sensory overload. This is one of the hardest things to explain, but I'll try. Processing sensory input--sight, smell, sound, touch, etc.--can be overwhelming. On bad days, even bright sunshine can be too much. On normal days, I know to limit the amount of sensory input in a given time period. For example, going to see a movie can be a challenge if there's always a lot of action or important fine details on the screen. By the time my brain has figured out what I'm seeing, the movie has already gone on to the next thing I need to process. It's exhausting at times.

Another example: Too rich a sensory experience can be, to some extent, painful. Nick and I have spent time hiking in the Canyonlands National Park in Utah. Awe-inspiring beauty, right? But I can't look at the pictures we took while we were there. There's just too much detail, too much to process, when I look at the pictures. Trying to take it all in makes my brain hurt.

Just feeling sick. You know that feeling when you're coming down with a cold? Like your head is full of cotton balls and your body creaks and doesn't feel like it's yours anymore? When you're not sick enough to stay home from work but give it serious consideration? That's how I feel at least 75% of the time.

Minor symptoms

Pain. Muscle aches. Occasional neuropathic pain and joint pain. It can be bad enough to prevent sleep, even with Vicodin and gabapentin on board.

Body temperature regulation. I swing between hot and cold. I am comfortable in a narrow range of temperatures.

Sleep. Sometimes I sleep for 18 hours. Sometimes I can't sleep at all.

Poor motor coordination. If you thought I was clumsy before I got sick, well, just don't let me hold anything valuable. And there are days when I know that I would be unsafe behind the wheel of my car.

Painful lymph nodes. Persistent for the first eight months or so of illness. Now mostly gone.

Night sweats. Again, this is a symptom which has largely gone away. A year ago I'd wake up with soaking wet pajamas and sheets, drenched in sweat, and freezing cold. It'd happen at least five days out of the week. Now it happens maybe every two weeks, and the intensity is much less.

Vision changes. This was a problem for about three months in the beginning of 2009. It seemed like my vision was just a little different every day. It's stabilized for now.

Forgetting how to do simple tasks. This hasn't happened very often, or else it'd be listed alongside the major symptoms. Examples include: forgetting how to climb stairs, forgetting how to pour sugar into my coffee mug. This has also decreased in frequency since treatment.


Progress has been made. It doesn't always look like a lot, because there's still a very long way to go. And I write about the symptoms I still have, not the ones that have gone away, because there the ones that are still bothering me.

Going into treatment, I knew that it was supposed to get worse before it gets better. That's certainly true. Once I start to feel a little better, that's a signal that I can tolerate getting kicked down again by a new medication and a new round of herxing. Now I've gone through enough ups and downs that I'm on drugs to target all three forms of the bacteria, plus another drug to target the bartonella.

And the next time I see my doctor, I'm going to press for increasing my Rocephin dose and possibly switching from some oral antibiotics to more IV antibiotics, assuming that the IV form allows better penetration of the drug. And that'll probably kick me down, and then I'll get back up. I'm taking a variety of supplements to help my body eliminate the die-off toxins and to deal with cytokine production. So hopefully each herx will be less severe than the last. But if not, I'll press on anyway. The best way out is always through. / And I agree to that, or in so far / As that I can see no way out but through.


  1. So sorry to hear this.Cases like yours make the abx therapy look not convincing , albeit this is the only thing with proven research behind it .

    Alternative treatments do not look very promising , though they do have advantage of generally lower investement (rife is relatively cheap -albeit could be complete waste of money - just consider you get really expensive shoe box in that case) . there is also salt/c

    For another radical approach you can look into blog .Its great blog detailing experience with treating lyme with stem cells. I find improved MRI a very convincing argument for it . If I could afford it I would consider it at your stage. AFAIR Amy had really aggressive LLMD (Dr. Horrowitz) and I think her treatment was aggressive enough

    I am not fond of herb therapies main reason I think that it tries to achieve same effects pharmaceutical drugs do with poorly researched components. And it is also more expensive than conventional therapy in many cases (if competing with orals/im ,not with IV) .

    I know you feel worse on more aggressive treatment , which is sad. Aggressiveness si the thing which gives me hope that I might be more lucky with "conventional" approach (quotes because its really far from anything ever FDA approved or bothered to research), that my own abx protocol will work.

    Since I tailored it to be more aggressive and have included one part which I have high expectations for - immunomodulation with real drugs (not supplements) , clinically proven to be effective for chronic viral and bacterial infections.

    Frankly I am scared to start my own treatment for that very reason - I know if I don' get better within a year it would be failure for me (and probably the end in general).As there would be nothing conventional left to try and I dont have high hopes for "miracle " alternatives to work

  2. "Just feeling sick. You know that feeling when you're coming down with a cold? Like your head is full of cotton balls and your body creaks and doesn't feel like it's yours anymore? When you're not sick enough to stay home from work but give it serious consideration? That's how I feel at least 75% of the time."

    Well put. I would like to express this to my friends, but I don't know how, so I stay silent. In any case, I have trouble expressing myself verbally, possibly because I'm tired or possibly because of my word-finding problems (lately I have twice called my laptop a "yogurt", as in "I forgot to turn off my yogurt"). This is disheartening for someone who fancies herself a bit of a writer. . .


  3. God I resonate with your story.Both Chronic Late Stage Lyme and Bartonella. The Rocephin didn't work for me, but as we you know everybody is different.Neither did the Doxy or Plaquenil, Azithro has and we will be adding Rifam in January. My LLMD did suggest I see a Dr. of Chinese Medicine for Acupuncture and Herbs to compliment my treatment. In all honesty, I didn't start to see any progress like was finally able to get out of bed and off the electric blanket for more than a trip to the bathroom until I started to drink this brown sewer looking medicinal Brew that we cook from raw herbs once a week and then I drink three x a day. I also appreciate the humor you clearly make an effort to keep in your life. How else could we possibly survive this hell on earth that nobody except the afflicted can understand. I have a friend who says Want to play word search? Indeed the civil war rages on, one step forward, three back. As you said, gotta get worse before we get better. Hang in there my friend, you are not alone and I appreciate your Blog very much. Best Wishes

  4. Actually, it is not Anonymous, it is Joyce, I just couldnt get the damn thing to post. Best.

  5. I know what you mean -

    People think you get better in a linear fashion, that you're getting better all the time, when it's more of lots of different infections and symptoms going through their own progressions.

    What you describe sounds SO much like my life! Good to know there are other people who experience something very similar.

    It's funny, even the way Lymies talk in video blogs tends to be very similar: the way we talk while tired, uncomfortable, and feeling sick.

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