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.