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.

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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.

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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.

At the Core

So far we've explored how treatment effectiveness, our enthusiasm for our treatments and what people have tried. Today, we look at a different angle on treatment options: what do people currently consider to be the core of their protocols.

This is different from what we were looking at in the last couple blogs because it is less about what we've tried out and more about what we are relying on, based on whatever level of experience we (and our doctors) bring to this.

We'll also look at a couple of the specific protocols we surveyed about to see how those are working for people.


Here's the data from the survey:

Now, I could spin these results in a myriad of ways. Here's a few:

• People who try more things get better at a higher rate (I spun one of my other blogs in just that way, remember? See how the purple line pokes out further on most things?) In other words, integrative medicine is the way to go, and the more angles you hit lyme from, the better off you'll be.

• People who get well are the ones for whom either antibiotics and/or herbs work well. (Given that there is lots of purple on both of those.)

• Given that the best outcome patients only rarely ventured outside this list of 6 things as their cores, if you are going to get well, you'll probably find it here. (This analysis is especially suspect: just because I surveyed about them doesn't mean they are all that special. If I'd asked, say, about hyperbaric chambers, they'd probably have a similar response to some of the stuff here.)

• In general, you are fortunate if you have access to antibiotics (a doctor who will prescribe them) and they work for you. Almost 80% of people doing well have them as a core, while only 62% of the worst outcome people do.

• The biggest gap between worst and best outcome patients is in the use of herbs. Therefore, herbs must be a key thing for getting well.

(Side note: see how much fun it is, playing with statistics? I could write a whole blog on how tempting it has been to spin data to fit my own preconceived notions biases. As a general media literacy rule, always be wary of how people spin data! Look at the graphs closely and see if you see a different interpretation.)

Unfortunately, I have no way of knowing which of those spins is actually true; or perhaps a better way to say it is that each of those spins is probably true for some people and not true for others.

I do find it interesting, though, that antibiotics are only core for about 70% of us. I regularly hear people on our support lists express surprise that there are non-antibiotic options out there, or that people are trying anything else. And here's some concrete numbers to say, yes there are other options, and not everyone is primarily focused on antibiotics as their core... in fact a significant minority are looking elsewhere for healing, a chunk of whom are doing really well.

Beyond that, this is one of those blogs where I invite you to pick your own spin. You've seen a LOT of data from me, and probably have looked at other people's as well. What do you think is going on?

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Now, I worried a little bit that there might be a built in problem here that related to time. We all know that chronic lyme cases don't resolve overnight, and it seems like the first thing that almost everyone tries is antibiotics. We also know that a lot of folks in this survey are relatively new to the treatment game (just over half of the people in this pool have been treating for 2 years of less).

So maybe people are doing best with higher doses of antibiotics just because they are on them longer? Or maybe people give up on certain protocols, or we put faith in different things depending on the time we've been in treatment?

(I actually fully expected that second thing to be true, that we'd see a drift away from antibiotics and toward more alternative things as people decided the first thing their doctors tried wasn't going to work for them. There's those biases rearing their ugly heads, eh?)

So I ran these numbers about treatments for longer and shorter term patients, and here's what that looks like:

If you can see something here you'd call statistically significant, I'll eat my hat. When you take into account that the sample sizes for rife machines and essential oils are pretty small, I don't see any significant differences here at all. So the differences we see in core protocols don't appear to be because people tend to gravitate toward one end of the antibiotics-alternatives spectrum over time.

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I also wondered if the variations were more about who we see (or don't) than anything else. Here's the breakdown, based on what type of practitioner support we have:

Now this is interesting! Here we do see significant differences (and in the next blog we'll look at lyme treatment success rates among different types of practitioners). The bottom line is that MD's are far more reliant on antibiotics as the core for treatment than ND's and OD's.

And people who are either essentially self-treating or relying on less knowledgeable doctors (which in some cases is functionally the same thing) are more likely to try a variety of options. This is probably in part because most non-LL practitioners won't prescribe antibiotics for the long term, and so they are forced into looking at other things.

However, some people are in this category voluntarily; they are choosing (either based on philosophy or giving up on professionals) to do it alone, in spite of the fact that it reduces their treatment options by eliminating access to long term (or any) prescription drugs.

Most interesting, perhaps, is how many therapies have a high enthusiasm rating (see my "Healing with an Open Mind" blog) and are not being used by lyme literate doctors, and especially MD's. This isn't that surprising  because MD's (like every other group of humans in the world) tend to rely on what they know, and antibiotics are one of their primary tools in their practices in general.

This information can be particularly helpful if you are in the process of choosing a lyme literate practitioner (and are either fortunate enough to live somewhere that gives you options, or are going to have to travel no matter what). Considering what your own preferred approach would be to healing, it is a good idea to choose a practitioner who is going to support hat basic mode.

As a very general statement, here's what I mean. Fan of antibiotics? Look for an MD. Interested in herbs and other alternatives? Look to the DO and ND doctors for that. Of course, you always want to ask about how that specific doctor approaches it, and these are generalities. Still, they look pretty significant to me, and knowledge, as they say, is power.

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OK, I want to go down a side street before we close today. I had asked survey questions about two particular protocols (and of course since starting this process a couple months ago, have come into awareness about many others I could have asked about... next time!)

I had meant to include this with the last blog, but spaced it out. (You know how that goes). Here's the info about those two protocols.

 I've included the info about antibiotics and herbals next to these specific protocols because these are basically subsets of the larger categories: Marshall uses antibiotics as the main bug killer (in conjunction with other things) and Cowden is an herbal protocol.

It looks like both protocols perform as well as their larger categories, but they don't generate more enthusiasm. It isn't surprising to see them tried less, as there are any number of variations on the theme of antibiotic and herbal protocols.

I don't think this reflects the same kind of belief biases I was discussing in the last blog so much as there being a plethora of choices within each other larger categories.

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!

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.