Sunday, October 28, 2012

Variations of the Theme of Stress

I'm going to spend a little more time on the stress question today before we move on to support. I talked a little bit in the last blog about how stress may be not just a result of our illness (and the social insanities that surround it) but may actually be a contributing factor to our illnesses lasting longer.

I got curious about this and so I went looking to find some resources that could help me better understand the role of stress in illness.

One article I found talked about HIV positive patients and how stress can increase the likelihood (by a significant amount) that they will progress to full blown AIDS. I find this interesting, because in both cases (HIV and Lyme/Cos) there is a pathogenic cause of the actual illness, and they aren't simple. Could stress also play a role in the progression of our illness? Hmmm...

And here's another interesting one. Stress contributes to illness by causing the body to be less effective at quelling inflammation... a major source of our pain. So if we could find ways to reduce stress, would we be helping our bodies be in less pain?

Clearly lyme comes with a motherlode of stresses. One of the ways that we may have a good deal of say in our daily experiences is in how well we can manage our stress. We can't necessarily control how quickly the bugs die or how fast (or even how much) our body recovers from the damage that has been done. But maybe there are things we have more control over.

What if stress reduction could make a big difference in our daily experience of our illness? What if reducing stress also meant reducing inflammation and all the associated suffering that comes with it? What if minimizing stress could be a factor in our illness staying manageable and not progressing to be completely debilitating (or fatal)?

Here's a fairly solid list of suggestions of non-pill things to try, most of which seem very doable, even for us. (Though I will note that while planting a garden can be a lovely bit of stress relief, needing to weed it on demand come July might not be. Maybe get a garden partner before trying that one.)

Finally, the standard wisdom is that high stress puts you at a definite risk for illness. Here's a handy system for evaluating where you might be in the stress realm. Please note that they say that if you experience repeats of an incident (including illness) you should count it multiple times... and surely a chronic situation qualifies to get counted repeatedly.

So stress from a chronic illness might very well be a circular thing: the stress reinforces the illness, which contributes more stress, and so on.


OK, so back to the survey.

I've been digging a little deeper, trying to find the correlations between different areas in our survey, and there's some fascinating little bits, some of which I don't really understand, but want to share anyway.

First off, answers varied a fair bit when I cross-tabbed them with what people considered to the their core protocols. I found myself wondering if people choose their cores for psychological reasons that might also affect their stress levels... or if one gets to the point of being really stressed out and then starts exploring "alternatives"... or does one of these factors in particular loom larger, and that helps determine protocol choices?

And I'm just not sure, but here's what I was looking at. I've highlighted the stress factors where there were the largest differences between answers form the different core treatment groups, and also did an average stress level for each core group.

So I'm left with a question. Why should THIS matter, and not all the other things I looked at in the last blog? I can speculate. Let's take folks for whm homeopathy is a core.

Maybe people who have leaned into homeopathics have done so in part because of money stresses.... because homeopathy is general less expensive than any of the others, it makes some sense that they'd end up going that route. And maybe they are isolated more because there aren't as many support groups around homeopathy: at least if you are doing antibiotics or rifing, you have a lot of companions to talk about with onine.

And maybe their families and friends believe them less because they are non-mainstream in other ways in their lives... the same ways that have gotten them to relying on homeopathics? (But you'd think the same thing would be true of rifers, and they seem to enjoy the highest level of family and friend's buying into lyme.)

And why would rifers be significantly more stressed about the politics? Is it because they have an extra layer to battle, this one within the lyme community itself? Rife machines are not nearly as broadly supported as the (hard won) use of long term antibiotics are among patients. Maybe politics in this case is double layered?

Or maybe people with more of an edgy political analysis are more likely to end up doing a more radical, non-mainstream treatment option, and it is just the general life philosophy that leads to both?

And are patients using homeopathy just more stressed in general because they have to deal with societal doubts on top of everything else? And if that's the case, why aren't rifers in a similar boat?

All of this is wild speculation on my part, but I must say this cross-tabbing of results is opening up a lot more questions for me about the social support and philosophies that different people have within the wider lyme community, as well as questions for me about how stress operates and intersects with all of this.

I'm left both fascinated and baffled.


OK, one more piece, and then we'll let stress alone. Another thing I noticed is that women report a higher level of stress across the board than men do. See:

Now the sample size among women was much larger than among men, so I don't want to make a huge deal out of this, but I found that consistency to be curious. If we rely on stereotypes for a minute, it makes some sense that women have more stress about their personal relationships and perhaps get more anxious about what their family/friends think (and indeed those two were the areas with the biggest gap.)

But if stereotypes were to hold true, wouldn't the men be more stressed about not being able to work and money? But they aren't. I don't think we can just write this off based on stereotypes.

So... maybe you have some thoughts? Why do you think stress levels vary between these different groups? I'm curious about what my readers would have to say about these.

Thursday, October 25, 2012

Stress and Spirochytes

Let's talk stress. It will come as no shock to anyone who frequents this blog for me to say that having an illness like Chronic Lyme Disease is incredibly stressful. (Of course one could argue that there isn't another disease quite like chronic lyme, and we'll get to some of that in a minute).

There is, of course, more than one relationship between stress and illness. The American Psychological Association has made a recent study* of how stress contributes to chronic illnesses... and found that a lot of people are in a fair amount of denial about just how much stress is affecting their own health.

Here's a quote from that article:

While 9 in 10 adults believe that stress can contribute to the development of major illnesses, such as heart disease, depression and obesity, a sizeable minority still think that stress has only a slight or no impact on their own physical health (31 percent) and mental health (36 percent). When considered alongside the finding that only 29 percent of adults believe they are doing an excellent or very good job at managing or reducing stress, APA warns that this disconnect is cause for concern.

What this raises for me, when combined with today's numbers from our survey, is how much the stress of our illness might in fact be a factor in delaying our recoveries, and if we are really taking the psychological aspects of our illnesses seriously enough.

It's fine to blame it all on "bugs in our brain" (and believe me, I do this myself on a regular basis) but what if the stress of the social, political, spiritual and financial aspects of the illness are playing their own independent role in keeping those bugs happy? If it is a factor, the bugs are being well fed, because we are one stressed out bunch of monkeys.

Here's the avergae rating of ten different stress factors among chronic lyme patients:

Here's the actual phrasing of the question and answers on this one, and how they translate into the ratings system:

What factors cause you stress related to your illness? (Please indicate how stressful.)

0 = not stressful
1 = a little stress
2 = some stress
3 = significant stress
4 = extremely stressful

What is most notable to me is that none of these answers come out with particularly low ratings. The lowest one on average (family and friends disbelieving your diagnosis) is still well over a 2. What other disease can you think of where the average stress level from that is this high?

Can you imagine coming home from the doctor's office and saying to your family, "Well, I have high blood pressure (or cancer, of liver disease, or whatever)." And them saying, "I don't believe you"? Doesn't it just seem bizarre?

Certainly there are people that this hasn't happened to (in our case, 59 of the 333 people who made a response to that particular question say this hasn't been a source for stress for them at all, so we can infer that for at least some of them, that's because it hasn't happened) but....

Wait a minute! That means that at least 274 of 333 people have had this happen to them? What?!? That's 82.3% of respondents. And that, my friends, is insane.

OK, I know that Fibromyalgia and Myalgic Encephalomyelitis (aka chronic fatigue) patients deal with this, too, and we aren't the only ones. But the difference I see between these two things is that fibro and ME are both still in the "we don't know what causes this" category, where lyme isn't. (Please note: I'm not excusing the behavior of people who give fibro and ME patients a hard time, I'm just saying that it should be easier with lyme because the scientists have articulated a cause.)

Lyme is clearly caused by a pathogen: a cute spirally little thing that makes you horribly ill. It's not a mystery illness, and for some portion of us, we actually have positive test results confirming the presence of our little spiral friends. 

But in fact, in terms of stress, having positive bloodwork hardly helps at all for this one. The average stress rating among all respondents on this item was 2.26, which is just barely higher than the 2.22 among those who have positive bloodwork. Apparently people feel free to disbelieve you even with tangible, medically-based proof.

I keep coming back to: what exactly is there to not believe in? What does it mean to "not believe in" an illness? As if this is a matter of faith and not science, or that one has a life philosophy that can't admit the truth of some very basic biology. Really? (And even with fibro and ME, I find myself wondering why it is so hard to believe in an illness that science simply hasn't caught up with yet. Just because your dogma doesn't get it yet doesn't mean it isn't real.)

OK, so I'm getting stressed just writing about it. Sheesh. Time to move on.

Not Being Able to Contribute

OK, so here's one of the things I love about this community. Our #1 stress factor (with a 3.32 rating) is that we can't work and otherwise contribute like we used to be able to. We were active, engaged people for the most part before we got this illness, and the loss of our active selves is the worst thing for us.

We might hate the politics (which earned a 2.82 stress rating) and have deep frustrations with the medical community and the lack of good care (2.75) and be up to our necks in bureaucratic hassles (2.52) but the thing that bums us out the most--even above the symptoms themselves--is our own lack of being able to contribute and be active.

OK, maybe my protestant work ethic roots are showing here, but I find this impressive.

The Fatigue of Fatigue (and other symptoms)

Another interesting piece is around treatment fatigue. I know people who have literally been whacking at this beast for decades (though the more common story is measured in years). With a stress rating of 2.90, this one is close to the top of the list.

Among respondents who have been treating for 1-2 years, treatment fatigue rates a 3.03, for those treating 2-5 years, it is 3.00, and for those treating 5-10 years, it is 3.09. In other words, this gets old fast (even folks in treatment for less than a year rated this one at 2.47) and it doesn't seem to get much better over time.

I do, however, find it curious that it doesn't get significantly worse. You'd think 5 years would be notably different than 1-2 years, and even more so after a decade.

Perhaps all this means is that if you are wired to feel impatient with something like this (and most of us are, even if we are generally patient people) one year is probably long enough to dump you into that state, even if some folks do manage to significantly dodge this bullet. Of course, it also might look different if I had surveyed the same group of people multiple times over a long period of time... which I hope to do at some point.

Here's how this question breaks down:

Even though the average totals are very similar in the 1-2 year, 2-5 year and 5-10 year subgroups, you can see the trend for increasing levels of stress over time... if you just look at the "some stress" plus "significant stress" plus "extremely stressful" categories.

I find it interesting, though, that at least 5.9% of people in each category report little to no stress about treatment fatigue. There is a resilience imbedded in this answer that I find myself very curious about... how does one NOT have major stress about this over time?

So I went poking around. How about meditators? Nope, they have an identical rating of 2.90 to the general survey population on this one. Yoga practitioners? Nope, they come in at 2.84. People who report that having a spiritual practice or belief is helpful? 2.91. Good family support? 2.91. Good social support? 2.92. Competent medical care? 2.91. (It's actually a little weird how consistent this is.)

OK, how about people optimistic about their recovery? Here's the only real difference I found, and even this may not be significant. They come in at 2.71.

Now, obviously, I've only honed in on one of the ten stress factors I surveyed about. I could run through a similar process with any of them and might find some other interesting patterns, and might find other things to comment on.

But the fact that optimism (which is an internally generated, state of mind kind of thing) seems to be a bigger factor than what someone does (like meditation yoga) or has (good family or social support) leads me to think it may simply be a matter of who someone is at a personality or basic programming level. I look forward to leaning into that question more in later studies.


*As an interesting side note, that APA article contains a few paragraphs about caregivers of ill people and the incredible stress they are under. Might be a good thing for us all to be aware of, as our close companions also suffer, albeit indirectly from lyme.

Sunday, October 14, 2012

In the Beginning...

Welcome back, everyone! Thanks for tolerating a nice long break for me. My own symptoms were flaring, my community was doing a 15th anniversary reunion, and I just needing some time off.

Over the next couple months, I'm looking forward to completing the first round of Lyme Voices survey blogging, and am brewing plans for future work. Thanks for hanging in there and being part of the adventure with me.


Now, where were we...

...ah, yes. We've arrived at the part of the survey that deals with the early days of our infections. It seems that most of us had no idea what we were in for in those early days. Some of us don't even know when we got infected, since there were no dramatic early symptoms... no rash, or flu-like illness, or arthritis, the kinds of things we are told to expect.

Here's what the survey said. 58.5% of us don't remember getting bitten by a tick, and only 20.7% had a classic bullseye rash.

Of course, this is a survey of folks with chronic lyme. It seems far more likely that lyme will get caught and treated in the early days if there is a big fat bullseye to clue us in to what we are dealing with. While it is disturbing that almost 21% of us had a bullseye and still ended up with the chronic form, I'm thinking this isn't so much because bullseyes don't show up in 79% of all cases but that you are much more likely to end up with a chronic illness if you aren't "lucky" enough to get this no-brainer symptom.

For the 41.5% of us who remember a tick bite around the time we first got sick, it seems quite likely that that was how we got lyme. But what about the rest? I asked folks to speculate on how they think they got it (knowing that it is probably impossible to say for sure where you got it unless the tick is found and tested and your blood cultures the same strain that they found in the tick.)

And here's what survey respondents said:

I find it interesting that only about 3/4 of us feel sure we got this from a tick bite, as the story that "people get lyme from ticks. period" is still so prominent.

The lyme spirochyte has been found in all bodily fluids (lending credence to the idea that it is both sexually transmittable, and transmittable through breast milk) and apparently can be transmitted by various insects, not just ticks. There have also been babies born with lyme already in their systems.

And of course, lyme is in our blood. The Red Cross won't accept blood from people with lyme. Here's what their guidelines say:  
"Accept persons with Lyme disease if they were treated, the disease resolved and at least 1 year has passed. Those with CHRONIC Lyme disease are not eligible to donate blood." 

Whether or not we think it is wise to accept blood from people once treated that have been "resolved" for only a year, it is good to note that they take lyme seriously enough to include it in their proscribed conditions list. And it does raise the possibility that some of our mystery cases may have come from the nation's blood banks. (Now that opens a whole can of scary thought worms, doesn't it?)

In my mind, all of this provides plenty of reasons for doctors to not eliminate lyme from the possible diagnoses they consider simply because you don't live in an area where lyme is common.

Even granting for a moment that there is something sensible about the idea that lyme "isn't" in some places (when even the CDC charts show it clearly in every state in the continental US) I don't think you can really eliminate lyme as a possibility without taking into account if the person has:
  • ever had a blood transfusion, 
  • might have gotten it in the womb or from nursing
  • ever lived in or visited a place where lyme is common
  • ever had sex with someone who ever lived or visited a place where lyme is common
Only considering known cases from their immediate geographical area ignores a whole lot of other possible routes to infection. (Besides, you might recall from earlier blogs my thoughts about why else this thinking is wonky and circular.)


So how did we end up having the chronic form of this disease? This next question may shed some light on it. The answer looks pretty clear form this: most of us simply weren't treated in the early stages. Only about 25% of us got some kind of treatment when our symptoms first emerged, and I'd be very surprised if many of us got more than a couple weeks of antibiotics at that time.

I find this second category to be particularly interesting. Almost 1/3 of us got sick very gradually. This thing just sneaks up on so many of us, and then we look back from the vantage point of having a diagnosis that makes sense, and you can see the patterns... but five (or ten or however many) years earlier, we probably would have said that nothing major was amiss.

I'm imagining (because this is the case for me) that some of us who got antibiotics right away then had a period of being relatively symptom free, and then the symptoms re-emerged very gradually. I spent about 5 years not realizing I was getting progressively more sick before I really tuned in to something major being "off".

And in my case, the time delay between the initial bite and infection (in 1997) plus the message that I might have "lingering symptoms that don't mean you have an ongoing infection" made it harder for me to connect the dots when symptoms started to come back out in 2005.

So a chunk of people who did have treatment initially could probably also have answered in one of those top two categories for our re-emerging illnesses.

The bottom line as I see it here is that if we are going to prevent chronic lyme, it isn't so much about tucking our socks into our pants when we go outside; it is more about the medical profession learning to pick up on subtler cues and recognize patterns over time, and perhaps the general public having their awareness raised to think about lyme when things start to feel off.

We need different medical training, and more awareness about those early signs. If this doesn't happen, then many, many more people are going to be condemned to the slow slide into chronic illness.

Wednesday, September 19, 2012

The Struggles of Being a LL Doctor

 I think being a lyme literate medical professional must be pretty uphill. Standard medical practices don't work and you have to re-orient your brain and practice to what does, you run the risk of being harassed (and probably take some flak from your fellow practitioners), and you can't really promise you patients a return to full functionality.

It's a minor miracle that so many people have stepped forward to work with us. But fortunately, some do, and those numbers are growing every year. Today's blog focuses on a few of those aspects of lyme literate practitioners.


There were a lot of comments on the survey question of whether people had a lyme literate practitioner they were working with or not. I wanted to share these two: the first because it probably sums up a common sentiment, and the second because it is one of those double-layered heartbreaks we seem to have to live with.
"They cost more than my mortage. It can not happen for me."

"there are no llmd's out here...however, our group has just raised the funds to send a local doc for training....we are just having trouble finding one willing to go after how Dr. Joseph Burrascano was treated by the AMA and the insurance companies. It was and is a disgrace."
Being sick with lyme is indeed a pricey undertaking. (Actually, being sick is cheap--doing something about it isn't.) We've talked about that in previous blogs, but the quote above makes it clear why at least some portion of people answered that they are not seeing a lyme literate doctor at this time.

The second quote is completely crazy making. Because of the litigious environment doctors are facing in general (where 60% of doctors are sued at some point in their careers) as well as pressure from statewide medical licensure boards, treating lyme presents risks that no conscientious doctor should have to face.

And the truth is, I can't say I blame some of them. If you were a committed physician who really cared about your patients, I think you'd have to at least consider the possibility that being able to treat no one (losing your license) may not be what is best for your patients, even if it means having to turn down patients with one particular diagnosis.

The choice may come down to: serve no one, or serve most people. What would you do? (Of course we'd all like to think we'd risk it, but would we really?)

The way the medical community has chosen to police its own has put a lot of good doctors into a no-win situation, and honestly, I don't blame the ones who have turned us away. I think it is the AMA and state medical boards that need to be hearing directly from us about the effect their decisions have been having on patients, because it is their choice to continue pursuing these investigations.


So why is having a lyme literate physician such a big deal anyway? #1 is the complexity of lyme and the associated illnesses called "co-infections". Lyme is a complicated bacteria, with a myriad of tricks up its (nonexistent) sleeve. And it often comes along with a very depleted body that can't be rushed into aggressive treatment without whole systems shutting down.

Patient care takes real time to do properly (my appointments with my LLDO have ranged from 45 minutes to 3 hours in length... and they never feel long enough) and most physicians aren't willing or able to give that time. Unfortunately, the bigger the practice, the more it is run like a factory, in some cases with limited time dictated for appointments.

But another is simply in their willingness to believe and treat. Check out this quote from one of my lyme patient lists:
"...i was bed ridden and my dr of 20 plus years stopped being my dr once my pos igenex test came in (she was told by cdc not to treat) so i was left with no one. Its an awful feeling to be so very ill and to have the entire medical system up here turn their back on you."
With the CDC reinforcing the message that treating is a bad idea, it is not surprising that people get turned away. But how utterly heart-breaking. A 20 year doctor-patient relationship trashed is just one more tragedy in this crazy epidemic.

In addition to pushing against those prevailing winds, a good lyme literate doctor also needs to be willing to break the all-knowing expert mold that physicians are encouraged to fit. And I don't necessarily mean overt encouragement, though I think that probably happens some of the time as well; what I really mean is that we have a cultural expectation on doctors to be able to "fix" us when we are "broken"... and we in turn generally take what they say with a near god-like certainty.

But LL docs can't really do that honestly, can they? They can't promise miracle cures or quick fixes, and they can't protect us from the seriousness of what we face. They lay it out in a forthright way for you: this is a marathon, not a sprint, and at the end of it all, you may never regain your health completely. We are all still learning, and there is a lot to learn, but we are in this together and are going to do our best to treat your whole self. 

In other words: I may not be able to heal you, and I need to be humble alongside you. That is a huge break form the standard mold.

So who do we call when we are bed ridden and faced with a medical community that for the most part doesn't want (or know how) to deal with us? Here's the rough numbers from the survey. (Note: as some people are seeing more than one LL practitioner, the totals add up to more than 100%)

So by far the most popular choice is seeing an MD. I got curious about how this distribution compares to the general distribution of types of practitioners. I couldn't find a website that laid all of these out next to each other, so the methodologies are probably different. But here's at least ballparks on number of practitioners in each category:

In 2008, there were 954,224 MDs in the US*.
In 2011, there were 78,000 DOs in the US.
In a Spring 2011 article, I found the stat of 5,000 NDs in the US. 
And in 2008, there were 128,000 NP's in the US.

So clearly the most available option is an MD: way more than 58.8%. Given this distribution, it's pretty amazing to me that we have the size of numbers we do seeing these other practitioners. Does this mean that a higher % of DOs, NDs and NPs are lyme literate than their counterparts in the MD group? Seems likely.

It is particularly notable that almost 19% of us see Naturopaths, when there really is a small number of them in the US practicing medicine, and they aren't even licensable in most states.

And I also wonder if MDs haven't been a lot harder on their own than the professional organizations have in these other areas... which bring us to the question of doctor harasment.

I asked patients this question, "Do you believe that your lyme literate practitioner has ever been harassed for treating lyme patients?" Obviously, this is a subjective question, and it doesn't say anything about who was doing the harassing. But here were the responses:
67% of patients of MDs say their practitioner has been harassed.
39% of patients of Nurse Practitioners say their practitioner has been harassed.
32% of patients of Osteopaths say their practitioner has been harassed.
22% of patients of Naturopaths say their practitioner has been harassed.


Of course, this doesn't mean that 67% of all MDs get harassed, because I'm sure we have multiple patients of, say, Dr. Jemsek, in this survey. And in fact one way that doctors become high profile is by being sued, and if they keep practicing after that, then they are more likely to have people find them easily as they've planted their flag in the ground as a being willing to treat. 

It does however mean that 2/3 of patients seeing an MD in our survey live with the stress of fearing they may lose their doctor at any point because of lawsuits and licensure "reviews".

The reason given for some of the (more formal) harassment relates to the supposed over-prescribing of antibiotics. Given that, it isn't surprising that MDs are being hit hardest, as they have the most universal prescribing rights in the US of all these categories.

I find myself wishing I'd asked more about the nature of that harassment, though, since the numbers are also so high for these other categories.

Perhaps NDs are left alone more simply because they are the least formalized of the categories (and therefore have more leeway around being a little crazy anyway?) Or perhaps because they are trained in very holistic medicine, they see a lot higher % of chronic illness people and work with practices that are less regulated, for better or worse? Or they don't have a professional organization that benefits from internal policing?

More to be learned for sure. And when it comes right down to it, if I hadn't seen the 67% number for the MDs, I'd find 22% to be shockingly high. (It is shocking, isn't it?)

So, thank you, all you lyme literate practitioners who are risking your practices to save our lives. Thank you for going out on a limb and believing in us.


This is probably a good time for my occasional gratitude pause. Thanks so much to all my fellow patients who have let me quote them, took the time to answer the survey in the first place, and continue to follow the blog and add your own wisdom in comment, both here and on our lyme support lists. I feel very grateful to be able to fill this role in the community, and for your continued grace as I find my own voice and try to make sense of it all with you.

And... I'm also going to take a break for about 10 days or so from writing blogs. You may have noticed I've been putting them out less frequently the last few weeks. My neuropathy is acting up and I think I need to de-pressurize myself a bit and slow down trying to churn them out.


*I used numbers just from the US for this survey of practitioner types, and I know that isn't the same pool that our survey respondents came from. I realized, though, that I don't know in other countries what the labels and licensure deals are... I mean, I barely get it in the US. So it felt like I was going to open more cans of worms than would be useful. So apologies to those outside of the US!

Friday, September 14, 2012

A Little Light Reading

I think I need to order The Lyme Disease Solution by Kenneth Singleton, and Pamela Weintraub's Cure Unknown. Those were the two books most strongly recommended by respondents our survey that I don't already own.

I decided we were ready for a break from all these heavy topics, and it was time to pull out the lyme reading list.  So here we have a lighter topic for the day, the survey answers to what books we have read and how helpful we found them.

It would have been hard to survey about all the books out there. There are actually a surprisingly wide array of them available these days... which is in sharp contrast to just a few years back.  (Note that most of the books on this list were published 2009 or later.)

I picked the books for the survey in a very scientific manner: I went on Amazon and looked for the most popular books on lyme, figuring they'd be the most likely to have been read. (Of course, just a few months later, this list already seems a bit out of date, and doing the same search on Amazon today yields a somewhat different list. Sorry if your favorite wasn't included!)

Here is that list of books:

The Lyme Disease Solution by Kenneth B. Singleton M.D. (2009)

Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections by master herbalist Stephen Harrod Buhner (2005)

Cure Unknown: Inside the Lyme Epidemic by Discover magazine executive editor Pamela Weintraub (2009)

The Lyme Diet: Nutritional Strategies for Healing from Lyme Disease by Nicola McFadzean ND (2010)

Checklists for Bartonella, Babesia and Lyme Disease by James Schaller M.D. and Kimberly Mountjoy M.S. (2011)

Nature's Dirty Needle: What You Need to Know About Chronic Lyme Disease and How to Find the Help to Feel Better by Mara Williams (2011) which wins the "most provocative cover award in my book

Everything You Need to Know About Lyme Disease and Other Tick-Borne Disorders by Karen Vanderhoof-Forschner (2nd edition, 2003)

Healing Lyme Disease Naturally: History, Analysis, and Treatments by Wolf D. Storl, Matthew Wood and Andreas Thum M.D. (2010)

The Lyme Diet: Nutritional Strategies for Healing from Lyme Disease by Nicola McFadzean ND (2010)

Recipes for Repair: A Lyme Disease Cookbook by Kenneth B. Singleton, Gail Piazza and Laura Piazza (2010)

Beating Lyme: Understanding and Treating This Complex and Often Misdiagnosed Disease by Constance A. Bean and Lesley Ann Fein (2008)

Out of the Woods: Healing Lyme Disease--Body, Mind & Spirit by Katina I. Makris  (2011) 

Treatment of Chronic Lyme Disease: Fifty-One Case Reports and Essays in Their Regard by Burton A. Waisbren, MD (2011)

The Baker's Dozen & the Lunatic Fringe: Has Junk Science Shifted the Lyme Disease Paradigm? by PJ Langhoff (2009)

And finally, a trio of book by journalist and lyme patient Bryan Rosner: 

When Antibiotics Fail: Lyme Disease and Rife Machines, with Critical Evaluation of Leading Alternative Therapies also by Michael Huckleberry, M.A. and Karin Driesen (2005)

The Top 10 Lyme Disease Treatments: Defeat Lyme Disease with the Best of Conventional and Alternative Medicine (2007)

Four Immune-Supporting Supplements Every Lyme Disease Sufferer Needs to Know About, And Where to Buy Them (2010)

The Envelope Please!

So without further ado, here are the ratings for the 17 books I surveyed about:

In this rating scale, a 3 would have been the top rating possible.

It occurred to me that we could get a second set of data by going back to Amazon and looking at the ratings for these books there, so here's Amazon reader's perspective on these same books (remember that Amazon uses a 5 star system so their scale is different than mine):

Rosner's Four Immune Supporting Supplements had not yet been reviewed, so it doesn't show up here.

Taking these two data sets together, it seems like Cure Unknown is the most universally beloved lyme book out there right now. I'm looking forward to reading it and seeing what you all are so excited about! And it is always fascinating to me when one thing is at the top of one list, and the bottom of another, like The Baker's Dozen on these. 

That said, we like a lot of books, and we are blessed to have had so many new titles come out in the last few years--a decade ago, it was a lot harder to find good information (note the publication dates of the books, above.)

Given the choice between trusting one list or the other, I'll just remind folks that the list we generated with the survey was fellow lyme patients only. Anyone can write a review on Amazon (and I hear about folks publishing a book and then encouraging folks to write glowing reviews about them, even if they aren't so hot.) So view these ratings within that context. 

And if you do have a book you really love or really disliked, go ahead and write an Amazon review. The more lyme voices we get in there, the more folks will have good guidance in what can really help them. (And Amazon, whatever its faults may be has a lot bigger audience than y blog.)

I'm inviting people to talk about other books you love in the comments area. My survey was hardly exhaustive! Or tell us why you rated the books the way you did if you took the survey.

Transparency: What's on my bookshelf and how much I liked them

Buhners Healing Lyme is my favorite so far. I love having more of the real science available, and love how the protocol is specific to different symptoms and co-infections. I find him to be very real, balanced and clear (even if I struggle a little to understand the more technical stuff.) Very helpful!

Rosner's Top Ten book was also very helpful for me when I was figuring out what direction I wanted to take my healing process. I got insight from it that helped clarify what I was looking for in a doctor. It is proving less helpful now... but only because I am deeper in now and have had enough experience with things to be moving on to making my own conclusions about it. 

Rosner's writing style is very accessible and easy on a lyme-ridden brain, and I'd call this one a very useful resource for folks new on their lyme journey. (I also feel a bit of the kindred spirit thing with Rosner, as we are both non-medically trained patients writing for the benefit of other patients.)

Because of the Top Ten book, I started considering more seriously going the rife route, and so I got Rosner's Lyme and Rife Machines. After having read the Top Ten book, I must say this one didn't add a lot for me. More detail, yes, but I'm not sure I needed it. 

I figured rifing was either going to work for me or not and knowing more didn't really effect that experience for me. So this goes into the somewhat helpful category for me; if I'd gotten it first, my assessment might have been different.

Strasheim's Insights into Lyme Disease has a brilliant premise behind it: write up the protocols of 13 doctors who have had good success treating lyme and do it differently. Unfortunately, the way the book is set up made it really hard for me to read it... not enough connecting the dots within most of the chapters for me to really grok what they do and why, or even understand the terminology different doctors use. 

Because each doctor wrote their own sections, the writing and format are very inconsistent. I think it would have been a lot better to make it more consistent, while still preserving each person's voice. (That is the challenge that magazine editors face every time they publish an issue.) 

I got a few tidbits out of it, but never even finished reading it (which is incredibly rare for me-- books are like a relationship to me, and when I open the cover, I've committed!) So also only somewhat helpful.


So... tell us what you think of the books you have read! I'd love to see comments on the blog about different books.

Monday, September 10, 2012

Support Denied

We hear stories all the time in the lyme community about the apparent ignorance and arrogance of the medical profession. From the willfully ignorant...

I was told, "There are no ticks in California, and you didn't get the rash so there is no way you can have Lyme disease. I will not test you for it, but I'll test you for tuberculosis instead."

... to the offensive and dismissive (this one from a neurologist)...

He said, "Lyme disease is superficial, you are doing this to yourself. I have many patients with similar complaints that I refer to psychiatrists. Now be a good girl and go back to your family doctor and get a referral." 

... to actively interfering with other doctor's orders...

A few weeks ago I was told by the on staff doc and the infectious disease doc that they had NEVER heard of rocephin or zithromax being used to treat Lyme, and thought my llmd was a wacko for having me on them. So they told me they refused to let zithro, plaquenil, diflucan, and cifprozil be dispensed with all my other daily meds.
I collected these quotes and another 6 along similar lines in 12 hours (most of them overnight last night) from 2 online lists, with a total combined membership of about 400 people. My guess is they'll keep coming in today (but it is time to hit the "publish" button).

Another common theme that isn't reflected in these quotes that I've heard can be captured by this:  "It was all going fine until I told them I have lyme. Then it felt like they couldn't get me out of their office fast enough."

Just how common are these stories? Well, today's blog focuses on a particular brand of loss associated with chronic lyme: the loss of services we have been taught we can count on, including insurance, emergency room access and doctor's treatment.

All of the questions I asked along these lines could have been more specific and gathered information that would paint a more thorough picture. While this should thus be considered preliminary, it none-the-less raises questions about whether there is a pattern of discrimination that we should be taking note of.

Here's the answers to the questions that related to denial of care and coverage:
  • 12.4% of the respondents say that they have had an involuntary loss of insurance coverage for a reason other than changing jobs since they've had lyme.
  • 46% say they have been denied a claim (or part of a claim) by their insurer that was related to their lyme diagnosis.
  • 35.3% say they've been denied care by a medical practitioner or a hospital (including an emergency room) and suspected it was because of their lyme diagnosis. An additional 10.5% say they are not sure if this has happened to them or not.

This last category feels like the most disturbing one to me.

After all, I've gotten to a place of pretty much thinking insurance companies will be insurance companies. They seem to be in the habit of denying claims for all sorts of reasons; we can hardly expect that lyme would be any different. In fact, in California, the denial rate for claims runs 10-20% of all those filed.

So 46% of us getting caught in that at some point is perhaps not all that significant.

However, over 1/3 of us at some point being denied care by a doctor or emergency room is pretty disturbing. And with the "not sure" answers added in, the total is almost 46% of us who may have experienced fairly egregious discrimination.

What motivated me to ask this question was hearing stories (sometimes first hand, but more often through the grapevine) and wondering how much of this was a matter of a kind of urban legend... 3 or 4 people that this kind of thing happened to, and then we all repeat the story so many times that it seems like it is hundreds or thousands of times. And it makes you think, "No, really. This can't really happen that much."

But... maybe it is happening this much. I'm looking forward to a format for doing this kind of social research work where I can do interviews with a portion of the people, and get these stories recorded. And then I'm going to write a damn book about it.


One good thing about the National Health Care bill is that folks won't be able to lose coverage because of a pre-existing condition. I'm not sure, however, that it will help with the claims denial rate. If anyone has any information about how that will be changing under the new system, I'd be very interested in hearing about it.

In the meantime, I find I don't have a heck of a lot else to say about this.

Finding ourselves in a position of dealing with discrimination based on how we happened to have gotten sick is pretty remarkably disheartening. (Not that discrimination based on race, gender, sexual orientation, religion or whatever else is any more sensible; it doesn't change the fact though that it is crazy making.)

But sheesh. It's hard enough to be sick with an incredibly complicated disease without piling politics and discrimination on top of it. It's enough to make me want to crawl into bed and put a pillow over my head for about a month.

Except I have to get up and take pills. So I guess we'll all carry on as best we can, eh?

I'm going to close with a quote from a physician who does get it:
"In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease." Kenneth Liegner, MD

Wednesday, September 5, 2012

Docs, Tests and Societal Healthcare Costs

Today's blog looks at different aspects of the cost of chronic lyme disease. I'm focusing here on practitioner and testing costs, following up on August 29th's blog about protocol costs.

First, here's the raw numbers to our question about how much we spend each month on our practitioner visits. (This includes practitioners we see in the emergency room.)

The good news is that most of us manage to keep this under $500/month. The bad news is that 15% top $1,000/month--just to see doctors.

And it looks like going to the ER more is a significant factor in making it more expensive. Here's those numbers:

It looks like patients who use the emergency room as a more significant part of getting care, unsurprisingly, spend more money on average on their care. (That is probably a no-brainer statement, but it is nice to have some actual numbers attached to it.)

The most unfortunate thing about this is the folks who are forced into using the ER because they haven't been able to get competent medical care and are unable to manage symptoms in a less-than-crisis-filled manner. It clearly isn't cheap (for either individuals or the broader society) to be using the ER to meet your doctor needs.

Another place where we get some variation is in the type of practitioners we see. Here's a simplified chart with the numbers for folks who are seeing some type of lyme literate doctor:

As a very general statement, it looks like patients seeing Osteopaths spend a bit less, and patients seeing Nurse Practitioners spend more. That struck me as curious. Why would seeing an NP drive the price up?

I wondered if this might be because NP's tend to have less in the way of prescribing rights than MD's, and if this might mean that someone seeing an NP would be more likely to also have to see someone else for their meds. But this ought to be true for at least some DO's and ND's (whose prescribing rights vary from place to place, just like NP's do).

Maybe it matters because NP's are more likley to use antibiotics in their practices (which require a prescription) than DO's or ND's are, and so it really is about prescribing rights? Hmm... curious.

I did find one other potential factors as I was fiddling around with the numbers. I'll share these numbers in later blogs, but one thing I did find was that MD and NP patients use the emergency room more than ND and DO patients do. So perhaps it is the combination of these two factors (needing a back-up prescriber in some cases and ER usage patterns) than make NP care more expensive?

This goes into the bin with the growing list of other "things Ma'ikwe wants more info about".

 Is this a Test?

OK, so far we've looked at the cost of various protocols and of our practitioner visits. Now let's look at testing. Many of us have been poked, prodded, cultrued and drained more times than we care to remember.

Sometimes testing is to get a diagnosis (actually diagnoses would probably be more accurate, given that we rarely have just one tick borne disease), but then a lot of doctors also monitor our thyroids, livers and CD57 levels, assess us for allergies, check for other viruses that have gotten reactivated by our compromised immune systems, check our genetic profiles and hormones, look for damage to our hearts, brains and joints, and a host of other things.

Sometime the testing seems never-ending... and so do the bills associated with them. Here's what that looks like:

That's right: 25% of us have spent over $50,000 on testing alone, with another 20% coming in with collected bills of over $20,000. Lyme just isn't a disease I'd recommend to the poor or uninsured. And that's unfortunate, because the borrelia bug doesn't pause to find out those statuses before settling in.

One of the things I found myself wondering was how much of this was spent before we ever got a good diagnosis? In other words, how much of these big bills would be avoidable with better attention from the medical community on lyme as a real and dangerous illness early on in the process? (Into the bin those questions go.)

There is also a second category of potentially avoidable bills. Even after I knew I had lyme, but was not yet particularly lyme literate myself, I feel like we did tests that a lyme literate doctor might not have felt the need to do. For instance, I had several thousand dollars worth of cardiac assessments prior to understanding that babesia can mimic cardiac issues.

Had my doctor at that point been lyme literate, we might not have run those tests at that time. Or we might have: knowing that I don't actually have heart damage (which lyme can surely cause) at this point is a useful piece of information. But $3,500 out of pocket worth of useful? That's what I'm not sure of.

Finally, your practitioner's treatment and tracking philosophy can make a big difference in how big these bills are. Some people are getting their CD57 checked every 8 weeks. Some people have never gotten it checked. Some people's livers really do need to be monitored, but some doctors need them to be monitored to track you within their own system they've developed.

In cases like these, I wonder (like with my cardiac evals) how valuable the information is, and how necessary all those tests are. Different doctors will have different answers to this, and your doctor's philosophy on these questions is likely to be a key factor in how big your bills get.

A little on the Bigger Picture

Caring about this is easy (and automatic) if you are a self-pay patient. If you have insurance, however, how much should you care? The answer to that is certainly up to each of us.

However, the average annual cost of medicine in this country is very high compared to other "developed" countries (and our general state of health doesn't seem to be benefiting from "throwing money at it.") Check out this article for some stats on that. (And lest you be concerned that this comes from the Huffington Post with it's liberal slant, Fox business published the almost identical information here.)

Even while recognizing that we are not "average" patients, I think it is worth considering the societal costs as one of the many data points that factor into things like testing. Surely we should be able to do good medicine without needing to be the country that spends the most on healthcare of any nation in the world. If we are that smart, how come we haven't figure out how to do medicine more efficiently?

Finally, as you are considering how you feel about our new national healthcare bill, here's a quote to contemplate (which appears in both the Fox and HP articles):
Many of the countries that spend the most per capita on health care have highly privatized systems. In the U.S. and Switzerland, which spend the most and third-most on health care, respectively, the government pays less than 65% of the total health care costs. In most of the countries in the developed world, public expenditure accounts for at least 70% of total costs.
So there is a noted relationship between privatized medicine and high costs. It makes sense to me that the more you let profit run healthcare decisions, the more profit will run up our bills. Even if you don't buy into socialized (which isn't a dirty word in my book, but I know it is for many) medicine as the solution, I do think that looking at price controls and profit caps in some way would be of benefit to all of us.

Because the bottom line is, we all have better things to do (like getting healthy) than stressing over how to foot these big bills.