Saturday, 19 May 2012

Chart It!

Make a chart of your symptoms! Get some graph paper, on the left-hand column list your symptoms and various affected body parts, and then across the top number the days. Each day, fill in the appropriate squares with the severity of your symptoms. Hurts like crazy? Fill that square in. Hurts just a little? Maybe just put a line across the bottom of the square. Record the worst of each symptom each day. You'll notice that some move gradually up and down, some might appear constant, and others can blink in and out in just a day. Now you have a record. With this record, you can help you and your doctor figure out exactly what to expect when, and even make a prediction on when you'll feel 100% normal again! Instead of being at the mercy of the disease, waking up each morning and wondering "what's the torture of the day going to be?", or wondering "When is it ever going to end?", you could be looking at your chart and knowing exactly what to expect and when! Of course, you still have to map that first cycle, but from there on out you're not just blindly muddling along!

Sometimes interpreting your chart can be difficult. For instance, some body parts may feel fine during the first month or two, only to become painful later on. Reason being, is that they started out numb, and as the bacteria died away the feeling came back to that area. Physical symptoms that started out painful should show themselves fading away with each cycle. Basic energy level should rise each month, although there may only be a slight increase between the first two cycles. Neuro symptoms should also improve slightly each month, but they will be the last ones to finally clear up.

The Lyme bacteria appears to stick very tightly to its cyclical schedule. These cycles tend to be about 21 days in men, 30 days in women. If your symptoms don't appear to be going down with each cycle, then consult your doctor about increasing the antibiotic levels, adding another, switching, or whatever the attack plan they might suggest.

Because the physical symptoms disappear first and the psychological ones are sometimes difficult to measure, your doctor may ask you to begin recording your temperature a few times a day once your symptoms are nearly cleared. When you've gone through a few full cycles without sign of a fever, you're done!

The Lyme bacteria will typically have a peak intensity sometime during its cycle each month. Beginning, middle, or end is a matter of chance and at what point you start your charting. But it can be very frustrating to start your antibiotics on the low end of a cycle, only to find yourself feeling worse and worse as the days go by. Which is why you are keeping a chart! It is completely irrelevant to use day- to day or even week-to-week comparisons for whether you are improving. The only reliable way to tell is to compare each months chart and see if the symptoms are improving overall. Again frustrating, because you really can't tell if you're improving for at least one full cycle. Unless of course, you're one of those miracle Rocephin cures, which is rare. The rest of us suffer for a month, and then begin comparing each month's date to the previous to see if there is improvement.

Typical uncomplicated recovery. Before starting your antibiotics you might find yourself feeling pretty bad, or at the least, not very good. Once you start though:

Oh my God, I'm gonna Die.

Ugh, I feel horrible.

Feeling bad.

Feeling much better.

Wow! I feel pretty good!

Symptoms gone!

Now Cycle 1 Cycle 2 Cycle 3 Cycle 4

This chart assumes many things, mostly that nothing goes wrong, that the choice of antibiotic and its level are correct from the start, etc..It is intended to be an example of how a typical recovery might feel.

The Lyme Disease Cycle. Is not really 30 days precisely. Rather, in women it tends to match their menstrual cycle in number of days. In men the cycle is usually around 21 day. But again, these vary from person to person. The only way to know for sure is to make a chart of your symptoms and then begin looking for patterns.

There are many different strains of Lyme Disease. Fortunately there
is also a variety of antibiotics. The trick is to find the antibiotics which your stain is susceptible to and that your body will tolerate in high doses. This can be extremely discouraging, to spend weeks or months on a particular antibiotic, only to figure out that it isn't working. This is one reason that Lyme Disease is frequently treated with two different antibiotics at the same time. Another is that doubling up provides a much higher kill rate. If the
first set of antibiotics you try doesn't seem to be doing much, don't be afraid to ask you doctor for a few short trials of some others. Try each one for three days. Remember how you felt each third day. Continue with the one/ones which hit you the hardest.

Cephalosporins - When they work, they work extremely well. This family is effectively an "instant" kill, meaning that it can kill the bacteria regardless of the stage of the its life-cycle. Naturally, like everything else, they're more effective during the reproductive cycle. But, essentially, this class of antibiotics pokes holes in the bacterial cell wall and causes the little buggers to bleed to death.

Penicillins - This class blocks cell wall formation during the reproductive cycle of the bacteria. They are a slow-kill antibiotic, but usually highly effective.

Cyclenes - Generally gum up the DNA of the bacteria. Without functioning DNA, the bacteria can't reproduce or grow.

Advanced Macrolides - Block protein synthesis in the bacteria. Without proteins, the bacteria have a difficult time doing much of anything.

Metronidazole - Does three things: gums up the bacterial DNA,
suffocates the bacteria that may be in anaerobic mode, and breaks their little legs so they can't run and hide (almost literally! The bacteria use their flagellum to escape attacking white blood cells, but without functioning flippers, they become easy targets). One possible problem with this antibiotic, is that it may be a tad too useful. By enabling the immune system to see and catch the bacteria the body is suddenly hit with the realizationthat there is tremendous infection going on. The immune system response can be intense. Possibly a great choice for "mop-up" later in treatment.

Antibiotics dosage and duration.
Typical bacteria have very short cycle times, usually measured in hours or minutes. This means, that an antibiotic that is given at a standard rate to produce an effective 10-20% kill rate can kill a typical infection in just a matter of a few days. With each cycle the antibiotic kills some percentage of whatever bacteria are still left. When the numbers get low enough your body cleans up the stragglers, thus keeping the "percentage of what's left" from becoming one of those "limits that never reach zero" problems that you dreaded back in high school algebra. The Lyme bacteria behaves the same way. With each cycle the standard rate of antibiotics will kill some percentage of whatever is there. Except that the Lyme bacteria has a cycle time measured in weeks! (3-4) It could take years to kill the infection at standard rates! Antibiotics are dosed quite high, and often combined, in order
to achieve the highest kill rate possible without killing the patient (you) in the process. But even forcing a very high kill rate can still take 4-6 months before the levels are brought down far enough for your body to overwhelm the stragglers. The other reason that antibiotic levels are kept very high for Lyme Disease treatment is that the bacteria isn't just in one or two easy-to reach places. It's everywhere. That includes the central nervous system (CNS) and inside cells, joints, etc, etc....Many antibiotics have a difficult time
reaching these places in concentrations high enough to effectively kill the disease in these areas. Don't let your doctor under-dose treatment options and effective dosage rates. Duration, or how long you stay on the high rate of antibiotics is just as important. A typical infection by a typical bacteria is beaten to death for many cycles past when it should have all been dead, just to make sure. Why not the same with Lyme? Currently, you'll be lucky if your doctor agrees to one full cycle symptom-free. Press for one full cycle fever-free. If you manage to stay on antibiotics for anything after that, consider yourself blessed. But 3-4 fever- free cycles, assuming that you're back living a healthy lifestyle and doing what you can to keep your immune system pumped up in top condition, well, that should to it. Time to stop and see if it's really as dead as we all hope it is.