Prayers for Silver Bullet Unanswered

What works and what doesn't for treating lyme is probably the single most talked about topic on our support groups. Today, Lyme Voices wades into the fray with our survey results on this question. This will be the first in a series of blogs on the treatment questions.

The number one thing I took away from this is that there is no silver bullet that works for everyone, and everything I surveyed about got a "very helpful" rating from some people. That clears it right up, doesn't it?

The way the ratings work for the charts I'm presenting is that I asked people to rate things they had tried with their sense of how helpful it was for them. Then I calculated the average response using these numbers using this formula:

Not helpful = 0*
Somewhat helpful = 1
Helpful = 2
Very helpful = 3

Thus, if everyone who tried something rated it as "very helpful", it should have a rating of 3. It turns out that everything I asked about falls between a 1 and 2-- overall, somewhat helpful to helpful. If we'd hoped for a resounding "This is it!" response, I'm afraid these results** disappoint.

So, we have a top cluster of antibiotics, infrared saunas and herbal antimicrobials. I don't know with the sample size we had if there is much of a statistically relevant difference between these three. But it seems that these three come strongly recommended by chronic lyme patients.

The second cluster also represents treatments that have a good amount of enthusiasm among the people who have tried them, landing right in between "somewhat helpful" and "helpful": IV vitamin C, vitamin C and salt, rife machines, homeopathics and essential oils.

The last category in this very rough clustering are methods that have clearly helped some people, but the support is more luke warm: colloidal silver and hydrogen peroxide. Both of these were also the only ones of the ten in this chart who had more "unhelpful" ratings than any other answer (among those who had tried it).


What works according to those who are getting well

Now, let's look at the same ten treatments, with the folks that have had the best outcomes next to the general lyme populations' responses. By best outcomes, I mean people who are reporting being 75% better or cured.

First, a little additional background on this crowd. There were 69 people in these categories in our survey; only 19% of the people who answered this particular question***. Of people reporting best outcomes, 57% have been actively treating for at least 2 years. That also means that 43% of these folks have been at it for less than 2 years.

That got me curious about how many of them may actually be experiencing a first remission, and not actually going to hold steady with what they are currently reporting. This, in and of itself, is very good news, and given that so many people (66 to be exact) in our survey report no gains or backsliding since starting to treat, it makes sense to count them as having a good outcome, even if it doesn't last or stay steady.

However, it is different than just looking at the pool of people with both a lot of years under their belts and good outcomes--for that we'll need a much larger survey. Then we could speak more confidently about the effectiveness of treatments over the long haul.

Still, here's what this group says. The order of treatments is similar, but it appears that this population has stronger opinions about things. The rating system is the same.

What we see here is that the top 3 answers land in the helpful to very helpful range for people who are doing the best. Again, antibiotics, herbal antimicrobials and infrared saunas top the list. (Now, does that means that if these three things work for you, you'll do well? Or does it mean something else? Need more data!)

Again, our middle cluster falls right between "somewhat helpful" and "helpful" and includes essential oils, rife machines and vitamin C/salt (which are more highly regarded by this group) and IV vitamin C and homeopathics (which don't show any significant difference among those in this subset).

With our third grouping, colloidal silver and hydrogen peroxide, we see them drop below the somewhat helpful line. As with the full survey group, the most common response among those who had tried these was "unhelpful". My conclusion would be that, while they may help some people, they wouldn't be the first thing I'd gravitate toward.

Next blog, we will look more closely at these numbers and break them down in some different ways. For now, go forth and discuss!


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* I considered making "unhelpful" a negative number. I think if I redo this survey, I'll add another choice, which is "harmful" and that really ought to be what gets the negative rating. "Unhelpful" could either be a neutral or a negative, so it didn't feel right to make it negative.


** The astute reader of my blog will probably have noticed that not everything I surveyed about on this question (which was #12 for those using the questions blog as a reference point) is here in the charts. I decided for reporting to make sure I was doing apples to apples. So the ten I've included here are ones that people are using to kill off our shared pathogen of lyme.

So, I left out: fungal and parasite pharmaceuticals; herbs for support of treatment and cleansing and detox. I've also left out, for now, the two specific protocols I asked about: Marshall and Cowden. We'll circle back around to these other ones in later blogs.

In doing so, I am leaving aside for the moment all the myriad arguments ala: "there's no scientific evidence that this kills pathogens." People are using these ten things for that purposes, regardless of the arguments swirling around them, and thus I'm interested in what patients report.


** I don't think we should conclude from this that only 19% of people can get well or show major gains. A lot of folks who have gotten well are probably not all that focused on lyme any more and thus did not participate in this survey, or even tune into its existence; I feel lucky that a handful of them are still around and did participate!

In a Compromised Position

I feel blessed. In the midst of all the horror stories that have become part and parcel of my daily life supporting fellow lyme patients, I'm pretty darn functional.

I do this blog, and am active on facebook lyme forums. I live in an intentional community and I still manage to go to a weekly meeting, do a little committee work and make my women's group meetings. I watered the garden a few days ago when my neighbor who I garden with (who has done 99.9% of it this year) was caught out of town unexpectedly.

But I don't work anymore; the closest I've come in months is managing an occasional interview with someone who comes to me, and a few hours here and there where I don't have to travel, and a little planning for next year's work (hope springs eternal).

My days are defined by the small space of my house--a house I built myself with work exchangers and friends in the last few years before I crashed. I go from bed to couch to bathroom, and only some days make real food for myself and my son. Neighbors come and juice for us once a day or sometimes stop in to talk community, and that's my main social contact.

My sex life is shot, and lyme has done a lot to erode the emotional juice from both friendships and marriage. My best friend, Alyssa, drops by a few times a week, and those visits are precious to me, in part because I'm emotionally oversensitive and Alyssa still loves me. (I'm teared up writing that; it means so much to a chronic illness patient when old friends stay in our lives.)

And I'm not alone. I'm going to quote a couple paragraphs from this paper, to give you a sense of how impactful chronic lyme disease (called CLD in this quote) can be:

There is also evidence that symptoms of CLD can be severe.   The Klempner trials described the quality of life for patients with posttreatment chronic Lyme disease (PTLD) as being equivalent to that of patients with congestive heart failure or osteoarthritis, and their physical impairment was “more than 0.5 SD greater than the impairment observed in patients with type 2 diabetes or a recent myocardial infarction”. (Ma'ikwe's note: that's a heart attack in medico-speak.)

Fallon et al. described pain reported by patients with Lyme encephalopathy as being "similar to those of postsurgery patients”, and their fatigue “was similar to that of patients with multiple sclerosis.” Limitations in physical functioning on a quality of life scale were “comparable with those of patients with congestive heart failure”.   

We are, in fact, quite sick, though in most cases, you wouldn't know it from look at us: how many of us regularly hear, "You look great!" Isn't that weird... how can we look so healthy and feel so crappy?

So how do we rate ourselves in terms of compromised lives? Here's the data from the survey:

Now, my guess is that both of the extremes in this are probably under-reported. A person without any compromise is unlikely to be particularly focused on lyme, and probably not find or take the time to do this kind of survey. Folks who are really bedridden are unlikely to have the energy to spend 45 minutes doing an online survey. (How the heck did you folks who are bedridden manage this, anyway?)

(By the way, you may note that the total % on this chart adds up to more than 100%; that's because I let people choose more than one answer. I always feel irritated with surveys that don't allow for nuance. So some people, for instance, may have chosen both "noticeably compromised" and "significantly compromised" if they felt their condition was on the border between those two answers.)

Still, we work with what we have, and the survey says that 62% of us report a compromise level of significant to bedridden. This strikes me as being very much in line with the studies I quoted above, where the authors have put the lyme data next to other diseases that people have more familiarity with.

Today's chart can be an excellent resource for those people in your life who talk about how you are faking it, or don't look sick, or don't generally seem to grok that your condition is serious. (By the way, am I dating myself by using the word "grok"--does anyone USE that word anymore? Or just revealing my early science fiction reading roots?)

Hang in there folks! This disease is a crazy, debilitating experience. The only saving grace is that we are all in this together.

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!

Male perimenopause? and other random thoughts

Last blog, we started to look at the results from the symptoms questions. Before moving on, I want to highlight three things that caught my interest. Here's my three:

1. perimenopausal-like symptoms, 
2. weight regulation and the thyroid, and
3. thought on the media, sparked by the (relatively) low incidence on seizures

1. MCIDS can imitate perimenopause. I say "imitate" with some confidence (as opposed to thinking of this as prematurely inducing) because this happens even in men, who shouldn't have a need for menopause in their lives.

The five symptoms here that might look like perimenopause are hot flashes, night sweats, weight gain, emotional oversensitivity and loss of sex drive. In fact, if you were a doctor and a woman came to you with these five symptoms, that would look like a "no brainer" diagnosis, wouldn't it? But here's how those same symptoms look for men and women:

Now given that the bulk of our respondents are in the age range of 40-60, it makes sense that a lot of the women in our survey group are also going through perimenopause, and therefore that the numbers are higher for women. But were seeing this same profile in a lot of the guys, and I'm pretty sure that isn't what is up for them.

Thus, a second profile (in addition to the last blog's "flu plus neuro" profile) that doctors can be on the lookout for is either women they are tempted to call "early menopause" patients (which was one of my diagnoses; I was labelled perimenopausal at 37) or men whose charts cause their doctors to do a double take on the "patient sex" question.


2. Weight regulation. We have 50.3% of the lyme population reporting weight gain and/or an inability to lose weight, and 36.5% reporting the opposite problem: weight loss and/or inability to lose weight. Both can be problematic (physically and emotionally) though the excessive weight loss end of the spectrum is probably more immediately dangerous. This kind of thing just leads to more diagnostic confusion, as the patient can present either way.

One thing this points to is that our thyroids are probably involved in a lot of cases, as the thyroid plays a strong role in weight regulation. The thyroid is just one organ in a complex system of hormone regulators in our bodies, and it is the one that controls metabolism (how fast you burn through calories).

My doctor talks about the hormone system in our body as working on a hierarchy of needs. The top of that hierarchy is survival, and everything else can be shut down or ignored in service to survival. Our sex drives can be early sacrifices to this; see above chart. (Don't you hate that? Sheesh. This disease is no fun at all.)

When survival is at stake, you can also expect that the regulation of emotions for the sake of polite society will also become less of a priority. Thus, in addition to the emotional oversensitivity numbers above, 53% of us suffer from the more serious emotional symptom of "lyme rage".

Thus, many of us with lyme act "hormonal" ( to use the phrase that for ages has been tossed at women when men are irritated with us having emotions and expressing them.... hmmm... so one interesting thing about lyme is that it is the great leveler on that old score!) Lyme rage knows no gender lines.


3. We need to be media literate. The crux of media literacy is being aware of the messages we are being fed, and being able to have a sane and healthy response to them, cutting through the biases to get to the heart of things. It also means using doing our own messaging in a way that is both in integrity and effective.

I realized as I started to see the symptoms numbers roll in that I was expecting to see more seizures. And that was weird. As I thought about it, though, I realized that I had been starting to pay attention to media coverage of chronic lyme, and that the most prominent recent media coverage had a lot of seizures in them (I'm thinking of Under Our Skin, and the Dr. Phil Show as the most stark examples of this.)

I'd bought into the image that most patients have seizures... I hadn't been a very savvy consumer of media images. I think it is important for us to be media savvy. What this means is three things: 1) Yes, do get the dramatic stories out there because they get people's attention. Both of these are examples of good media from that perspective. But place the more common examples side by side as well.

2) Have good boundaries ourselves as lyme patients with not getting drawn into the fear those stories generate. The truth is, most of us probably more closely fit the profile of Dana Walsh (the woman who works for U2 in Under Our Skin) than that of  Mandy Hughes (the woman whose picture graces the movie poster).

In other words, don't scare the crap out of ourselves thinking we are all going to have seizures from lyme or our treatment. 19% of people do, and that's horrifying; but that also means 81% don't. We don't need extra fear driving our anxiety levels up; the media is very, very good at fear.

So personally media savvy means you are able to watch things like Under Our Skin and understand that media will be drawn to (and play up) the most dramatic cases it can find.  You can celebrate the way it is helping get the word out and impact people emotionally without having to take it on in your own emotional body. Look at it this way: you are already convinced this is serious; Under Our Skin is for people who aren't.

Which leads me to 3): we have to tell a wide range of lyme stories. Watching some of the media coverage, you'd think that you have to be bed ridden and paralyzed in order to have lyme. Most undiagnosed lyme sufferers won't resonate with those images and therefore won't see themselves in it enough to go get checked out.

There is danger to our community in focusing too much attention on one end of the spectrum (which the media will gravitate toward) of experiences with this. We need to make sure we are serving the currently undiagnosed population in what we do with the media, and I actually think they are the most important audience we have.

So all those interviews that folks have been doing, telling your own personal stories... keep doing them! The more varied our stories are that are being told, the more likely people will start to understand the essential truth of lyme: it is a sneaky little bastard that manifests in many, many ways... and it might just be your mystery illness.

Foggy, Tingly, Twitchy and Numbles

Today we start looking at the symptoms of chronic lyme. First, let's take a brief look at the "classic" lyme symptom, the bullseye rash (technically called an erythma migrans or EM rash).

Here's the CDC's lyme symptoms* chart, from confirmed cases, 2001-2010:

So the CDC says 70% of people get this particular rash. My survey results came back with less than 60% of people having rashes of any kind, and only 15-20% were EM rashes.  The Canadian Lyme Disease Foundation website says that EM rashes occur in less than 9% of cases. When I see such big differences in results like this, it makes me curious. I want to know why the numbers look so different. (This is a basic consensus principle: when you disagree, try to understand the underlying reasons, and talk at that level, rather than just butting heads about whose numbers are "right".)

So here's the best thought I've come up with so far on this one: The CDC only counts cases that fit certain testing profiles (and their strict criteria is much more narrow than my criteria for participating in this survey... self-reporting, which is as open as it gets) and we know that lyme comes in many strains. I wonder if the tests that are out there are most effective at detecting strains that do indeed show the EM rash in a larger percentage of the time? We know that strains vary in how they present: the European strains of lyme (called more properly "borrelia" in Europe) present somewhat differently than the American strains.

Of necessity, the tests were developed based on strains that could be studied most easily in the labs, and if the EM rash was showing up regularly, these probably were the cases being diagnosed early on and therefore got the most study attention. My hypothesis is that the closer to those strains studied originally, the more likely they are to show on these tests, and meet the CDC's criteria. I am guessing that EM rashes are more common with these strains than they are in the general lyme spirochyte population. Thus, I think it may well be the case that 70% of people with CDC positives get the rash while only 9-20% of all patients get it.

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Allright! Back to our survey. Here's the results from our question about what symptoms people have.

I realize this chart is VERY hard to read, but it was the best I could do with the couple pieces of technology I have at my disposal (and can competently use). If someone would like to make a better one, please do so!

Here's a blow up of the top 15 answers:

Looking at these top 15, you can see how lyme can be tough to diagnose, and why it is referred to as the "Great Imitator". Many of these top symptoms are vague, could be caused by all sorts of things and do, indeed, sound like you have the flu. If we can't rely on that EM rash to give us a clue, you can see how the level of initial misdiagnosis happens.

However, not all of the symptoms here are in the normal range for a flu. The most distinctive very common symptoms in this survey are the neurological ones. Let's call them the lyme quadruplets: Foggy, Tingly, Twitchy and Numbles. Foggy (brain fog) strikes almost 92% of us; Tingly (those weird sensations like your hand is falling asleep or an electrical current is coursing through your leg) hits almost 85% of us; Twitchy (jerking, spasms or little subtle jumps of random muscles) hit almost 80% of us; and Numbles (when your face, leg or just about anything else just spontaneously checks out on you) shows up in 79% of cases.

Need I mention that these are all weird, unpleasant and scary? And they are not associated with any flu I've ever had.

I'd say that if a patient presents with flulike symptoms plus one or more of our four neuro pals, lyme ought to be one of the first things suspected. Run a (good) test, try an experimental round of doxy and see what happens.

And... we can also see that there are no universal symptoms. Rashes (of any kind) don't even appear in the top 15 symptoms. 4% of cases don't notice a diminishment in energy, which is the closest thing to a universal experience lyme patients have. 8% of us can still think clearly, and that same number don't have body aches. Even the symptom named affectionately for the disease-- "lyme rage"-- only shows up in 53% of us. What this means is that a medical practitioner who gets too attached to a certain symptom being "the" lyme indicator will inevitably miss some cases if they aren't looking at the whole picture.

Another way to see lyme from a medical practitioner standpoint would be this: if the symptoms don't fit easily together, it could be lyme. You might have half a flu, a neurological symptom or two and night sweats. Does that make sense? Rely on this basic old wisdom: the simplest explanation is often the right one; instead of seeking out three explanations (flu plus brain tumor plus perimenopause) at least consider that it might be just one: lyme can be the medical equivalent of one stop shopping for all your ill health symptoms.


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* OK, can I just say how irritating it is to see medical professionals and organizations co-mingling actual symptoms (like the EM rash) with diagnoses (like encephalitis and arthritis). And what does "cardiac" mean exactly? There are probably so many things lumped into most of the categories, that it is hard to know how to make use of their chart. Grrr...

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.

It's Hard to Stay Positive: Lyme Tests

Remember how I was encouraging us to cut the CDC some slack? Well today, I'm going to reel some of it back in.

We're looking now at question #7 about testing negatives and positives. Lot's of folks in the lyme community feel frustrated by the lack of good testing. On the other hand, the phrase "false positives" seems to come up whenever we talk lab results, and I think it is worth taking a little time to talk about that.

Here's what the CDC says about false positives: "If a patient has not been in an area where Lyme disease is common or their symptoms are atypical, positive results are more likely (emphasis mine) to be false positives. Similarly, if a patient is tested numerous times and only rarely tests positive, it is likely that the positive result is a false positive."  

More likely. Not "potentially" or "under some rare circumstances possibly" nor a general statement on being a careful medical practitioner being wise. No, they seem to actually be saying, "Feel free to blow it off if you don't think it could be right."

Just when I was starting to like them more.

There are multiple things in these two statements that are highly questionable. I am certainly willing to grant that it is easier to get lyme in some places than others. However, in this case, the idea that it can't happen in certain areas has created a false impression that it really isn't happening in those areas. (And thus, a low diagnosis rate.)

If doctors in supposedly low risk states won't diagnose the same presentation that a doctor in a high risk state will, then we have biases running our diagnostic standards rather than sensibility. This is a circular thing: if you don't believe it can happen here, then by not diagnosing it, you reinforce the statistics that say it can't happen here.

(Now it is also true that it is incredibly difficult for a conscientious doctor to keep up with all the emerging new information out there, and it is understandable that not everyone recognizes the symptoms profile with equal skill. More experience diagnosing any illness will lead to better skill at it in the long run.)

Here's a few different maps of risk level in different states. Let's start with the CDC's own map, Reported Lyme Disease Cases by State, 2000-2010

Remember that the real number is probably 10-13X the number of CDC confirmed cases, and those numbers are going up each year, not leveling off or dropping. The next map is from 2000, from the American Lyme Disease Foundation. The importance of this second map is how geographically spread out cases were 12 years ago.

Remember that birds, reptiles and mammals (including people) don't stay in one place. The more mobile we are, the more we contribute to things spreading.

And finally, here's a map describing distribution among man's best friend, with numbers from 2007. (Anyone else notice that dogs seem to being studied more than people? I love dogs... and yet something about this bugs.) The important thing here is that the bug that causes lyme in dogs is the same one that causes lyme in people; if dogs are getting diagnosed at higher rates in some of these states, why aren't humans?

When I look at these maps, the big take away I get (no matter what the source, or which big mammal we are talking about) is that lyme is all over the continental US. While one map each show nothing in Mississippi or the Upper Peninsula of Michigan, there isn't a region without lyme anywhere on here. (And gosh, sorry, Wisconsin. You're really taking the hit for us midwesterners, aren't you?)

So when the CDC says that a test might be considered a false positive because lyme isn't common in that area, I'd like to know their definition of common. I'd also like to know why they think it is OK to ignore those "uncommon" cases; just because everyone in the neighborhood doesn't have it doesn't mean you don't have it, ya know? Do we ignore rare cancers because they are rare, even when all the other evidence points to them?

The second thing in their statement is about "atypical symptoms". We'll talk more about this soon, but the bottom line is, there is no universal symptom for lyme, and people fit pretty different profiles. Some are mainly neurological, some mainly "fibromyalgia" type symptoms (tired and achy) some have lost their sex drives and/or gone into early perimenopause.

Which profile should we consider to be the "typical" one? (And please don't tell me it's that rash. See two blogs ago.)

Finally, the CDC doesn't like inconsistent test results. (Neither do I actually; where we differ is on what to do with them.) And that brings us to today's survey question about testing. I asked folks to share with us a quick look at their testing history and here's how it shakes out:

So here we have a population of people who have lyme. For 37%, the testing worked on the first go. However, a larger number of people got a negative before we got a positive. Some of this has to do with what type of testing we did. (In my case, I tested negative, crossed lyme off my potential illnesses list and muddled through for months before a friend hipped me to the fact that there is different testing out there and got someone to send my blood to Igenex, which yielded a positive. Thank you Mary Lou Singleton!)

However, a lot of it also has to do with what kind of shape your immune system is in. And according to Dr. James Schaller, bartonella in particular is very good at depressing the immune system in such a way that it causes lyme tests to be negative. And a lot of us have bart (as it is unaffectionately known to those of us who are most intimate with it.) Plus, tests are often reading your immune response in some way, and the sicker you are, the less likely you are to have a predictable, "normal" immune response.

Inconsistent testing can thus have as much to do with what is ascendant in your system at the time you got tested as what is actually going on in the tick soup of our bodies, or it can have more to do with the general state of your immune system, than it does whether or not you actually have lyme.

And there are any number of other factors than can depress the immune system (including a long term undetected lyme infection itself. See the blog from July 3 for a sense of what our lag times between becoming infected and being diagnosed can be.)

Further, if you have just gotten infected, you might not show up as a positive either because your immune system is not yet responding. In some ways, these are the most tragic false negatives to ignore, because lyme is much easier to deal with if caught within those first couple weeks, when it is not left to linger and dig in.

Thus, the very common occurrence of negatives tests... and my reasons why I think the CDC's apparent preference to discount the positive test as a fluke is probably exactly the opposite of what we need doctors to be listening to. Notice nothing in the CDC's statement gives us any reason to think that the pathogens were incorrectly identified.

Now that would be a real reason to consider a test to be a false positive, but it isn't what they are arguing. But in light of a clinical presentation consistent with lyme symptoms, any positive test (save one from a truly incompetent lab... which you shouldn't probably be using anyway) should be seen as building the case for lyme.

Somewhere in this diagnostic equation mess, there ought to be some space for trusting ourselves. When we know something is wrong, and the explanations we are being given don't make sense to us and when science (and the agencies meant to serve it) fails us, we need to trust our own bodies and what we know for ourselves.

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Bonus for those who are joining in late in their reading of my blog: a link from the Canadian Lyme Disease Foundation provides a host of reasons why someone with lyme might test negative.