Damage Reports

My first really odd symptom of my chronic lyme was that I'd be walking down the street and suddenly my knees would just give out and I'd be on the sidewalk in a heap. Once it happened while I was crossing the street, and I can still remember the feeling of dread and horror as I was going down... not here!

Every time I squat down or stand up from a squat, my knees crackle. I think they are very, very sad.

Lyme and Co do a lot of strange things to our bodies. As we begin to recover, one of the hard things to discern is which things are lyme induced damage that will simply be with us for the rest of our lives (or until heart or knee surgery-- which is probably in my future-- or some other corrective measure is taken) and what is simply being experienced because the bugs are still partying hard in our systems.

One of the real problems with the lyme debate being so polarized is that there is a batch of stuff that could legitimately be called a kind of "post lyme" syndrome, but that phrase has gotten used already to de-legitimize the existence of chronic lyme.

Post lyme syndrome really ought to be about living with organ damage. One way to tell the difference is that brain and heart damage shouldn't cycle in the way that our active infection symptoms do as the bugs bloom and die out each month.

Some types of damage are obvious with the right assessments: your brain has spots on an MRI, your heart doesn't pump normally any more, your joints sound like mine do, your gall bladder has already been removed. Today we look at the damage reports.

Remember that lyme is happiest invading collagenous tissues, which include our top three winners in the damage assessment count: joints, brain and heart. And notice how prevalent our organ damage is: only 36.6% of us say that we have no damage or we aren't sure. That means 63.4% of us have some damage.

It probably comes as no shock to those dealing with lyme, that the damage gets worse the longer we have it. Here's two charts that break the above data down. The first one is what I'm calling "mid-length" infections: people who have had lyme for 1-5 years. (Thus, it eliminates those folks who find it quickly and have an easier time getting it out of their systems: the more acute cases.) The second is for people who have had it for at least a decade.

One of the things that really sparked my curiosity is how dramatic the difference is between mid-length and long term infections for the gall bladder. 4% report gall bladder damage in the 1-2 year range, and 5.2% for 2-5 year sufferers. Here it is the least affected of the organs surveyed about. But look at the jump: 21.1% in the 10-20 year category and 24.7% for folks who have had lyme for over 2 decades.

That is 6X as high from the shortest term to the longest term infections in our survey. I'm not sure what to make of this: just that lyme doesn't target the gall bladder directly, so it is a longer, slower thing? Whereas we have much higher rates early of joint, brain and heart damage, which lyme does attack very directly? I'm curious what medical professionals think of this one.

The liver numbers don't rise nearly so much. So that also makes me wonder... if your liver is going to suffer, does that mean most of us will see that early or not at all? More research needed on that for sure! If we knew that livers melted down quickly if at all, wouldn't that be helpful info? It makes me wish we had a much larger sample size, and could track the same group of patients over 10 years.

Still, with most of these, there is a gradual increase in the amount of organ damage we suffer from. When we look at the three systems hardest hit by lyme, here's a chart that lays it out in an easy-to-print-and-take-to-your-doctor form:

This is one of the best reasons why we want lyme diagnosed and treated quickly. (And please note, if it take 17 doctors to get it diagnosed, that isn't "quick".)

Do you have any idea how much money we spend in the US every year on medical treatments for people with joint, brain and heart damage? I was curious myself, and so I went looking for some stats.

A quick search puts the cost of knee replacement at $45,000-70,000. (Note the wording on the link "for patients without insurance". Is anyone else deeply bugged by the fact that insurance companies pay less for the same procedure than you or I would? What a country!)

When we get into talking about annual costs of knee and hip replacements, they measure those overall US healthcare costs in the billion $$s. This is huge business! (And yes, I do understand that knees and hips wear out from things other than lyme... it is just a little mind blowing to me how much we spend on this stuff.)

My point is, organ damage is expensive. And it is also very debilitating... brain and joint damage are hugely impactful on our quality of life, and while joints can often be fixed, brain damage a much harder thing to deal with. In fact, with the exception of the gall bladder and half your kidneys, you pretty much need these organs working properly.



Co-infections

Here's the numbers when we add in the complexity of our two most common coinfections, babs and bart.

Almost everything goes up... except joint damage is almost identical, and Bart doesn't appear to affect the heart very much. Unfortunately, I couldn't figure out how to get results that did not also include the bart and babs folks in the "all" category, so I'm guessing the real numbers would actually be a bit more distinct than this.

The biggest jump here is with babs affecting the brain (and those who suffer from babs can attest to this, I'm sure!) There is a 7% jump in brain damage in this category. The second largest is bart adding 4% to the liver damage category.

I also found myself wondering if the jumps we see may simply be that both coinfections weaken our systems and create a distraction from getting rid of the lyme long enough that the lyme itself has more time to do damage. I don't feel nearly as versed in my babs and bart understanding as I do with lyme; do they even directly cause organ damage at all? Please weigh in if you are a medical professional with a good grasp on these two pathogens.


The Complications of Medication

How much of this is due to meds and how much is infections, is hard to say. Lyme tends to target collagenous tissues, which include joints, heart and brain. They also produce toxins, and the liver and kidneys are there to help cleanse the body.

But a lot of our medications are also really hard on the body, as is the sudden flood of neurotoxins we experience as herxing. Antibiotics, for instance, are the biggest offender for drug induced liver damage (and we do love our antibiotics in the lyme community).

Some of us make choices to not go the antibiotic route, in spite of the fact that herbal remedies are often slower than antibiotics to get the job done,  because of love of our livers. And if it does turn out that rifing and infrared saunas prove to be effective treatment options, care of our internal organs could sway a lot of people toward their use as options with minimal to no side effects.

We really do need to find more effective and gentler on the body cures for chronic lyme and its buddies. And we need to identify lyme much more quickly if we want to reduce our chances for major damage in the long run.

The Infectious Disease Society of America can keep twiddling their thumbs denying chronic lyme's existence, but meanwhile our bodies are suffering permanent damage; the rest of us need to get on with finding and healing lyme as quickly as possible.