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.

Lyme Plus: Coinfection Symptoms

Today we are going to look at combination packs and their symptoms: when you have lyme plus one or more coinfections, what do your symptoms look like? Harking back to my blog from July 19, here's a reminder of the top 15 symptoms for everyone in our survey.

I surveyed about 48 symptoms. People reported having an average of 31 symptoms. Thus, another of our lyme profiles that medical practitioners can be on the look out for is: "there's a heck of a lot going on with this patient."

And of course most of us don't "simply" have lyme. I thought it might be interesting for folks to see these cross-referenced results. Here are the chart of the top 15 symptoms for the co-infections I surveyed about.

 Each co-infection "flavors" the presentation of lyme symptoms in a different way. If you feel like your own profile fits one of these really strongly, it might be worth printing out the little chart and taking it to your doctor when you ask to be tested or evaluated for one of these; however, recognize that this ia a surface treatment of these coinfection, and that most symptoms I surveyed about can show up with just plain old lyme.

A most thorough treatment of co-infections symptoms can be found on the Living Lyme website. If you go to this page, scroll down the right hand side until you see the "Lyme and Co Symptoms Checklist". This well organized chart is invaluable for figuring out just what you--or your patients--might have going on. Thanks to Marsha Marcinko for her fine work putting together the Living Lyme website.

Using the resource list on Livining Lyme can tell you about symptoms that are distinct to one coinfection (such as air hunger being strongly associated with babesia). What my charts can give you a sense of is prominence of symptoms when that coinfection is combined with lyme. Use them togather to get a stronger clinical profile for each illness.


Babesia emphasizes brain fog and lack of concentration and motivation. (Based on responses from 192 patients.)

 

Bartonella bring insomnia and emotional oversensitivity into the top 15. (Based on responses from 212 patients.)

Mycoplasma brings emotional sensitivity and sharp pains into the top 15. (Based on responses from 80 patients.)

The word "malaise" comes to mind when you look at erlichiosis plus lyme: 100% of people with both lack energy, and exhaustion and lack of concentration are close on its heals. It also brings light sensitivity into the top 15 symptoms. (Based on responses from 71 patients.)

Of the results thus far, anaplasmosis strikes me as having the most distinctive pattern. 94.4% of people report difficulty standing or walking, and sound and emotional sensitivity also make the top 15. More interesting, 100% report a whole host of symptoms-- it is like this one is the great enhancer bug.

Really, solidly, horribly bad lyme? Check to see if this little darlin' is making it all worse. (Based on responses from 18 patients.)

In fact, look at the whole symptoms results chart when you add anaplasmosis in. I know this is really hard to read, but the point is, everything is reported a higher percentage of the time. It makes me wonder if the folks among us who are the most sick and seem to have every symptom possible might just have this puppy complicating their situation...

As a concrete comparison, remember that all patients reported 31 symptoms on average. Babesia plus lyme patients reported 34 on average (and any coinfection will up this number); anaplasmosis patients have an average of 39 symptoms. The lowest % for any symptom on both the general survey count and anaplasmosis was seizures. However, while 1/5 of all patients have them, 1/3 of patients with lyme plus anaplasmosis have them.


With rocky mountain spotted fever, we finally see rashes make the top 15 list. It also looks like it hurts more often than plain lyme: 100% report joint pain and 92.3% sharp pains. Light sensitivity also makes this list. A note on the RMSF rashes from later in the survey: 66% of folks with RMSF didn't get any rash when they were first infected, so presumably most of this rash activity has happened later on. (Based on responses from 26 patients.)

Note: with only 2 people in our survey reporting having Colorado tick fever, 5 people reporting tick borne encephilitis and 3 reporting tularemia, I judged them to not be large enough sample sizes to mean anything; I feel like I was already pushing it with a couple of the others, so I'm leaving these out.

Some day, we'll do the version of this survey that 2,000 people respond to. Then we'll really have a lot of charts to play with!

Playing Co-Infection Roulette

You're familiar with Russian Roulette? The game where you put one bullet into an old-style gun, spin the barrel and shoot yourself? It's the ultimate playing of the odds... you only have a 1 in 6 chance of dying, right? And boy, what a rush. Never quite understood it myself, but I've always been a bit of a nervous Nelly when it comes to my physical body. Plenty of excitement in the world without courting danger, ya know?

I've always been more of a nature girl myself. I like the calm of sleeping next to a river, the sounds of nature and soft winds lulling me to sleep and gently tugging me awake in the morning. I love fresh air and feel spiritually fed by being in the natural world. Of course, what we are realizing now is that I've been playing my own version of Russian Roulette the whole time. All those hikes, camping trips, canoe trips, living in a tent for some festival or another... heck, just walking down the street, enjoying a closer connection with the natural world than I can get from my living room perch. "That tick? May be nothing. Or may be it's fully loaded... you just have to take your chances."

Most of us who have lyme managed to get the combination pack... it seems like hardly anyone has lyme only. And that makes treatment much more complicated. Here's what we are dealing with:

About 3/4 of us have Bartonella, and 2/3 Babesia. This charming couple (let's call 'em Bart and Babs) have some symptoms that overlap with lyme, and some of their own unique horrors. Bart makes neurological symptoms worse, and can be accompanied by a streaky rash that looks a little like out of control stretch marks. It also contributes to the general fatigue and headaches. Bart lives inside your cells and (partly because of that) can be hard to pin down on a blood test. One strain of Bart causes cat scratch fever, and it is known to be carried by human body lice across the globe. (See isn't this fun-- you can get lyme from one bug and then a bunch of other stuff from other bugs and just sort collect them over time, accumulating health issues as you go along.)

Babs is often the culprit if you think you are having a heart attack of entering early menopause (or if you are a guy with menopause-like symptoms, such as hot flashes and night sweats.) If you have the quite literally named "air hunger" or have chest pains, it might be Babs. Babs is a parasite and is treated similarly to malaria.

For a much more thorough look at co-infection symptoms (and a longer list of the possibilities) I recommend downloading the excellent "Lyme & Co Symptoms Checklist" on the Living Lyme site (scroll down the right hand side on this page until you reach the downloads).

There's also a quicker intro to 5 co-infections here. While I take issue with the idea that lyme is "easily diagnosed" (see my last few blogs) this is a sound basic intro that you can share with folks who might want more information and don't have the patience to wade through the more thorough checklist.

Because lyme rarely flies solo in our systems but usually has all these friends along, I like the term "Multiple Chronic Illness Disease Syndrome" rather than simply chronic lyme.

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We will next be looking at symptoms, and then move into the treatment section of the survey. But for now, I'm offering a little treatment foreshadowing. Why is treatment so complicated with lyme, and what do the co-infections add to that mix?

Lyme would be much more simple to deal with if it were an "ordinary" bacteria however, spirochytes are more complex than most and some scientists actually think they should be in their own category.

Lyme can exist in 3 forms, and it is skilled at choosing the best tactic for survival at any given time. The spirochyte form is the great traveler: its unique shape lets it burrow into tissues and take up residence in almost any system in the host body. When threatened, though, it can turn very quickly into a "cyst" form, which is the hiding out form. One of the main reasons why a quick dose of antibiotics won't cure a lot of us is that the clever little devils go cyst-form on us and just wait it out. The antibiotics given for spirochytes don't touch the cyst form. The third form is a specialized form of bacteria called a "cell wall deficient" bacteria. Many antibiotics work by destroying the cell walls, which for an ordinary bacteria is the end of the story. However, no cell wall means there needs to be a different approach to killing them.

So now we are up to needing three types of treatment just to handle the lyme bug itself.

Lyme has two other tactics to keep alive. One is that they can ball into clumps, essentially protecting the inner layers from whatever treatment you are throwing at it. This doesn't mean new methods are needed, but it does add more time to the treatment. (They also have a very long reproductive cycle-- 4-6 weeks; most bacteria's life cycles are measured in hours. This also means longer treatment times are needed to wipe them out.) And finally, a lot of bacteria (including lyme) produce gelatinous goo in your bloodstream called "biofilm". This gives the bacteria a safe haven protected from treatment and also can make your blood sluggish, reducing the amount of oxygen your organs are getting. While the jury seems to still be out on how important biofilms are to address, many lyme literate doctors suggest taking a remedy to help get rid of them.

See how they are a lot harder to kill than ordinary bacteria? And this doesn't even take into account switching up medicines to avoid creating superbugs resistant to antibiotics. And... we haven't even gotten to the co-infections.

Let's just take Bart and Babs. Bart, luckily, is also a bacteria, so the methodology for killing Bart is not so different from killing lyme. While you may want different antibiotics or herbal antimicrobials to address the two things, they are at least not requiring a new category of remedies. Babs, however, is a parasite.

There are several big categories of bugs that can make you sick: bacteria, parasites and viruses are chief among them. And they are all treated differently. On top of co-infections, many of us find ourselves with old illnesses re-triggered. How that works is that you may, like me, have had mono (Epstein Barre Virus) when you were 19, and the virus has essentially been held in check by your immune system since then. Now, however, as your immune system becomes weakened, the EBV reasserts itself and now must be dealt with as yet another infective layer in your system. Part of how MCIDS patients end up taking 10, 20, 30 pills or liquids a day is that we have our own particular soup we are dealing with.


For lyme alone, you may find yourself taking:

1-10 pathogen killers: pharmaceutical antibiotics, herbal antimicrobials, rife machines, etc.
probiotics to counteract the negative affects of your main treatment
an additional "cyst buster"
biofilm reduction
vitamins for general immune support and to replace what the lyme is pulling from your system
medication to help sleep
medication for pain management
medication for energy support
medication to manage other symptoms (such as depression and neurological issues)

Let's assume, for simplicity's sake, that your Bart treatment is included. Now add several remedies each for the parasites and viruses you are also dealing with.

Here's the protocol I've been on for my diagnosis for the past 6 months (with links for the specific products I'm using as resources). This combo is designed to treat Lyme, Bart, Babs and Epstein Barre Virus.

600 mg/day (in two doses) oral doxycycline: for spirochytes
grapefruit seed extract w/ oregano oil: for cyst busting and antimicrobial
3 kinds of probiotics, rotated
lumbrokinase: for biofilms
multivitamin for general immune support
vitamin D3 drops (lyme uses up vitamin D and can leave you horribly deficient)
lauricidin: for bacteria and viruses
garlic tincture: for bacteria, viruses and parasites (mine is homemade)
slippery elm: for helping my tummy deal with the garlic and doxy
MRibose: for energy regulation
clay cleanse: for detoxing and heavy metals removal
ibuprofen as needed: for pain management
Night Rest herbal and mineral formula: for insomnia
rife machine sessions rotating between the 4 diagnoses and kidney/liver support
massage twice a month: for lymph drainage and pain management
detox baths a couple times a week and drinking lemon water as needed for further detox

Lest you think this is crazy complicated, my protocol is simple compared to a lot of peoples, and probably considered "not aggressive" enough by some since I'm only taking one pharmaceutical antibiotic. I'm in the process of switching over to a protocol based on Dr. Buhner's Healing Lyme book, focusing on his recommended herbs, the rife machine and an infrared sauna.

We'll talk more about treatments in a week or so. Next we turn our attention to symptoms and the impact lyme is having on our lives.