In honor of May being Lyme Awareness Month, in this last post we will answer the question, “What is chronic Lyme disease,” and explore Lyme disease prevention, treatment, and politics. Not to leave out our furry friends, there will also be bonus information regarding Lyme in pets, so read on!
Please note: As with all my health-related posts, this is in no way intended as a means for self-diagnosis or medical advice. As always, if you suspect you or a loved one may have Lyme or any other medical condition, please seek help from a Lyme-literate, experienced medical professional. Also, I am in no way affiliated with or receiving any compensation from any of the doctors or website owners mentioned or linked to.
Lyme Disease Prevention
Before we tackle chronic Lyme disease, let’s take a look at preventing it in the first place. There are many different ways help prevent Lyme disease.
Some are a bit unrealistic – sometimes to the point of being ridiculous — some involve chemicals and are therefore toxic to us as well as ticks (and one is not even toxic to ticks), and some are safe. Let’s start with the sometimes unrealistic and unsafe:
- Wear hats, long pants, and long-sleeved shirts. No bare feet or sandals.
- Wear shoes and socks, with your pants legs tucked into the socks. Especially during tick season…uh…summer.
- Buy clothing treated with permethrin
- Or DIY, and treat your clothing with permethrin
- Spray your yard with chemicals
- Spray yourself and your family with chemicals (like DEET)
- Do not go hiking or camping. Ever.
- Stay out of tall grass
- Stay out of shady areas
- If you do venture outdoors, immediately upon coming inside, strip naked and have someone examine every inch of your body, head to foot. Then take a shower. And throw your clothes in the dryer before washing them.
- Examine every square inch of each one of your animals twice each day. I don’t care if you live on a ranch with 500 head of cattle or horses. Just do it.
While it’s true that I had a bit of fun with this list, and it is also true these are pretty effective anti-tick measures…seriously? Are you really, in the heat of summer, going to enjoy the great outdoors dressed like this guy? Are you really going to spend the summer in the house, or if you do go out, stay only in the short grass or on the pavement, in the sun?
Hey, how about living in a giant bubble?
As for DEET, it’s not only toxic, it doesn’t work well against ticks. And the darling of “safe” insecticide recommendations, permethrin, is toxic to humans as well as bugs. Not as toxic of course, since humans use it at comparatively small doses, but still, it ain’t all rainbows and unicorns, as you can see from this report put out by the National Institute of Health.
I especially loved the part in section 13.3.1, regarding what to do for a victim of permethrin poisoning. You know, the usual things like calling 911, giving artificial respiration if they’re not breathing, or oxygen if they are but it’s difficult for them.
Oh yes, and the part about removing and isolating contaminated clothing and shoes. And in case of contact with the substance, you must immediately flush their skin or eyes with running water for at least 20 minutes. Well now, that certainly sounds like a safe chemical to be spraying on your clothing, yes?
Safe, Natural Protection
How about something safe and natural? You can easily make your own insect repellent using essential oils. Dr. Axe has a simple recipe on his site, and in addition to the oils he suggests, there are others that have been known to be effective repellents.
Some of these are lavender, lemon eucalyptus, geranium (the active ingredient in the toxic permethrin is a type of synthetic geranium oil), cedarwood, lemon, tea tree, peppermint, and neem.
There are other oils that even the CDC claims are effective against ticks, like thyme, garlic, 2-undecanone, arbovitae, and one called nootka oil. Before brewing up a repellent, however, do your research on whatever oils you’d like to use!
For instance, many say that tea tree oil is toxic to dogs, others say it is not. A few years ago, I was on a veterinarian’s website, and she was talking about that subject, even saying that there are vets out there who claim all essential oils are toxic to dogs. But she stressed that most aren’t, provided the ones you use are of extremely high quality and purity.
Since the essential oils I use are of this high quality (they’re the only ones I know of that have the CPTG — Certified Pure Therapeutic Grade certification), I started spraying the dogs with tea tree oil spray and put the oil in their shampoo to deter fleas.
Even our tiny rat terrier was fine with this. But the quality of the tea tree is not the only thing to be cautious about! Some oils should not be used on skin or on any pets at all, pure or not. Same goes for children and pregnant women.
But, many of these are fine for spraying on clothing, carpets, etc. And be aware that if using any type of citrus oil, you should avoid direct sunlight, as it can cause burning.
Use common sense, and be safe.
For those who are not so into the DIY thing, here is an article that mentions some natural blends available on the market for purchase.
Treatment for Lyme
Remember when I mentioned not only the treatments, but the politics? Here’s where the rubber meets the road because sadly, you can’t have one without the other. And grasping at least the basics of Lyme politics is really the only way to understand the different treatment options and make an informed decision as to what treatment path to take.
First off, there’s IDSA — the Infectious Disease Society of America. IDSA believes that Lyme can be successfully treated in as little as one month, but never more than three months, with various antibiotics. I suppose that if Lyme was immediately identified and treated, three months might knock it out.
Although, given the Borrelia gang’s ability to hide…maybe not. And really, I understand their stated “reasoning” behind this recommendation — which is that long-term use of antibiotics can be dangerous and even deadly.
I agree. But one month? Never. There has never been a study showing that only 30 days of antibiotics cured Lyme disease.
Other things IDSA has done are highly suspect. For instance, it is well known in the Lyme community that the available tests for Lyme are unreliable, some more than others. Scientists are working on a new test to detect early Lyme, but we don’t have it yet.
The Western Blot test that I had was done by one of the best labs in the country, under the most stringent conditions, yet the papers they returned along with the results cautioned physicians to not just go by the lab results for a diagnosis, but to use patient symptoms and history as well.
This is also well known in the Lyme medical community. Yet, in 2013, IDSA objected to a Virginia law that requires doctors to provide patients with a written notice explaining the uncertainty of test results for Lyme disease. Now I ask you, what is wrong with informing a patient of the truth?
What is Chronic Lyme Disease?
And they claim to be our advocates! No such thing as chronic Lyme disease? Then how do they explain patients who:
- Had the “classic” bull’s eye rash
- Developed many classic symptoms of Lyme
- Developed even more symptoms of Lyme as the months went by and no one thought to check for Lyme
- Years later developed even more classic symptoms, growing sicker and sicker and finally,
- were tested and found to have Lyme disease?
That, my friends, is chronic Lyme disease (although as mentioned before, many people never get the rash). The patient has gone for years not knowing what they had, and by the time they find out (if they do), the condition has become chronic and may never be cured. Usually, the best these people can hope for is remission.
That was my story, and it is the story of many others.
Chronic Lyme disease can also happen to those who know they were bitten a tick and are immediately diagnosed and treated. This is thanks to the foolishness of many in in the medical community insisting that 30 days of antibiotics will wipe out all traces of the bacteria. It doesn’t.
And besides that, simply throwing 30 days worth of antibiotics at the Borrelia bacteria does nothing against the other invaders that almost always accompany it (more on that later).
And do you know what’s a far sadder story than mine? The story of the many Lyme patients who have died due to IDSA’s meddling and petitioning State governments to go after doctors who prescribe antibiotics for more than three months; as well as holistic doctors who treat Lyme naturally.
The Politics of Lyme
And as may be expected, the insurance companies side with IDSA because many of the antibiotics used are very expensive, so to them, one or two months of antibiotics sound a lot better than six, eight, etc.
The result is that people are dying from Lyme disease due to being unable to afford long-term treatment.
Can you think of any other disease that doctors have been forced to suspend long-term treatment of when that treatment is expensive and may cause awful side effects, even deadly ones?
Let’s see…AIDS? Um, no — despite the fact that the various AIDS “cocktails” are terribly costly and potentially deadly, the medical community believes that the benefits far outweigh the risks, and I’d have to agree.
How about cancer? Mainstream medicine is still treating cancer in the same way they did 50 years ago. And radiation and chemo have been proven over and over to cause cancer. Yet no one would dream of telling a cancer patient that he or she would be cut off after three months of therapy, max.
And the cost of cancer is steep — a report released last year by the American Cancer Society showed that in 2014, cancer patients paid nearly $4 billion out-of-pocket, and cancer cost the country $87.8 billion in health care spending.
IDSA Takes a Dive
All of which makes IDSA’s quacking about long-term antibiotic therapy being too risky seem ludicrous. And it is ludicrous — so much so that a few years back, IDSA lost their lofty position with the National Guidelines Clearinghouse, which is a federal database provided by the Agency for Healthcare Research and Quality.
AHRQ is a little-known part of the US Department of Health and Human Services (HHS) that provides clinical guidelines to insurance companies, doctors, and other healthcare professionals.
About two years ago, the NGC removed IDSA guidelines for Lyme disease treatment from their website. Prior to that, in 2006, Connecticut’s then-Attorney General Richard Blumenthal launched an investigation of IDSA.
This was because of the concern that the 2006 IDSA Guidelines were violating antitrust laws by restraining “doctor and patient choices for treatment of the disease,” and preventing doctors from using their best clinical judgment.
This partial summary of the findings from Gonzaga University is a fascinating read, especially pages 135-145 (it’s not as long as you might think — there are so many references cited that each page is more like a half page or less).
IDSA also had some interesting financial bedfellows in the likes of consultant fees for insurance companies, drug companies patents on tests and vaccines, etc. AG Blumenthal never did file an antitrust lawsuit against IDSA because on April 30, 2008, the parties reached a settlement agreement.
However, the guidelines from ILADS, the International Lyme and Associated Disease Society, are still on the NGC database. ILADS is pro-patient and believes that the risk of long-term antibiotics outweighs the risk of dying from Lyme, and that the patient should be the one to decide whether or not to take that risk.
They also do not believe in persecuting and prosecuting doctors who treat Lyme by more natural means.
Again, this should be between patients and their doctors. My Lyme doctor offered me antibiotics but I refused, not yet ready to take that risk, because I had something better in mind. I wanted to try the potent essential oils I’d discovered, and then if they didn’t work, I would risk the antibiotics.
They worked. Now, I am not saying that if you have Lyme, all you have to do is use some essential oils and you’ll be fine. Far from it. There are many aspects to effectively treating Lyme, besides just killing spirochetes.
Killing parasites, for one thing. Lyme patients tend to have pretty nasty parasite infestations due to compromised immune systems that are tired from constantly fighting Lyme. Building up the gut flora to help the immune system is another.
Then there are often secondary illnesses caused by mold that must be addressed, plus heavy metals, as those of us with Lyme also often have a toxic burden caused by heavy metals.
And of course, there are other things needed, like lots of sleep, stress reduction, proper diet, and the like.
And let us not forget the co-infections — yes, the Borrelia gang rarely pulls off a job without help from members of other gangs, like Bartonella, Babesia, and Ehrlichia.
Just When We Thought We Were Safe…
But at least ILADS believe patients should have a choice, and I wholeheartedly agree.
So the NGC removing the IDSA guidelines from its website was a huge win and cause for celebration in the Lyme community. But as often seems to happen, the victory was short-lived.
Just a few days before I wrote this post, on April 23, a post on lymedisease.org announced the shocking — and frankly suspicious — news that the NGC, guideline.gov website will be shut down July 16, 2018, because federal funding through AHRQ supporting the NGC will be cut off.
What is particularly suspicious is what the announcement from AHRQ says next: “AHRQ is receiving expressions of interest from stakeholders interested in carrying on NGC’s work.”
The author of the piece rightfully wonders who in the world these “stakeholders” could be, and muses on the possibility of it being none other than IDSA. I think she’s on to something.
Where Did Lyme Disease Come From?
In my first post on Lyme, I mentioned that the ancestor of Borrelia had been found in a fossilized tick from the Dominican Republic. Researchers suspect it is Borrelia’s ancestor — to know for sure, they’d have to destroy the evidence.
But there is evidence of Lyme disease dating back to a 5,300-year-old mummy discovered to contain Borrelia’s genetic material. So Lyme disease has probably been here for thousands of years. The first recorded case was by doctor Alfred Buchwald in Breslau, Germany. Here is a timeline from whatislyme.com.
But the now-classic Lyme symptoms were so rare. That is, until 1977. Why did people suddenly begin getting infected with Borrelia in 1977, eventually leading to it infecting 300,000-500,000 people in the US alone each year? There is a theory (but you knew that, right?).
Uncle isn’t Growing Plums on Plum Island
Off the coast of Long Island lies tiny Plum Island, home to the Plum Island Animal Disease Center, which is run by the Department of Homeland Security.
Originally named for the wild beach plum shrubs that grow in its dunes, it was a post-WWII Army biological weapons lab.
In 1954 the Army turned it over to the Agricultural Department so they could study animal diseases; of course, the AD claimed they only studied diseases that could not be transmitted to humans.
According to New York attorney Michael Carroll, there was plenty more going on at Plum Island than Uncle was letting on, as is always the case in government-run installations, and often should be.
Carroll did several years of research and interviews with nearby residents and former employees before penning Lab 257. The book chronicles poor management leading to virus outbreaks, infected workers, and even the outbreak of Lyme disease and the 1999 West Nile virus outbreak.
On their website, the DHS insists that they have never studied Lyme disease.
What they do not say, at least not on the page I read, is that they have never studied any Borrelia species and/or tick-borne diseases.
And many people find it interesting that given the work they do on Plum Island (and the work that was done in the past), the fact that the island is beloved by wild birds, and the close proximity to Connecticut, that such a nasty, tick-borne disease suddenly and seemingly out of nowhere sprung up just across the Sound from Plum Island.
As for me, I’m not sure what to think. I know, shocker, right — that I wouldn’t have an opinion! Well, maybe I do. My opinion is that what Michael Carroll says may be true.
And I wouldn’t put it past our sometimes demented old uncle to mismanage something until things get out of control, then try to sweep it under the rug. “What rare Ming vase?” Sammy innocently asks, eyes wide, while standing on the section of the large area rug that is covering the broken pieces.
On the other hand, actual proof has not yet been found, to my knowledge. In the future, we may or may not find out for sure. And even if it turned out to be true, there’s nothing we can do about it at this point.
I think our energies could be better spent on patient advocacy and a cure — albeit not a “cure” that is worse than the disease, as so many so-called “cures” are these days.
Lyme in Dogs and Cats
According to veterinarian Dr. Karen Becker, most dogs who are exposed to Lyme disease are never really infected. Many dogs test positive on the 4DX test, which is a screening test for heartworms and tick diseases.
If a dog tests positive with the 4DX test, Dr. Becker says to have your vet run the quantitative C6 test (QC6) before prescribing antibiotics, as it will show whether the dog was truly infected or not.
Over 90 percent of the dogs that test positive on the 4DX test do not need antibiotics — their immune systems fought off the infection, and at this point, all antibiotics will do is drain your wallet and destroy your dog’s microbiome, causing problems down the road.
If the dog is truly infected, you could treat with antibiotics while at the same time implementing a plan to restore Fido’s microbiome. And if the dog is infected, you need to have your vet run the QC6 test every one to three months until levels are normal.
Lyme is very rare in cats, but if you live in an area where Lyme is endemic, you should check your cats and dogs for ticks twice each day. There are commercially available natural products that repel ticks, or you can make them yourself using lavender, lemongrass, peppermint, geranium, citronella, or cedar essential oils.
Before mixing up your own, however, Dr. Becker recommends working with an animal aromatherapist to make sure you get the dosage right. We don’t exactly have a plethora of animal aromatherapists in my neck of the woods, but I would be willing to bet I could find one online who can advise me!
As for preventative medications, be aware that the EPA has issued warnings about “spot on” flea and tick control — the liquid we squeeze onto the backs or necks of our pets.
Lyme in Horses
But what about Lyme in horses? It is happening on the East coast and possibly other places. According to PennVet, most horses in the mid-Atlantic region have been exposed to B. burgdorferi, but the vast majority show no signs of the disease.
Does this indicate the happy prognosis that Dr. Becker informs us about regarding dogs; that in almost all cases, the dog’s immune system fights off the infection (if there is one) quite nicely, with no interference from us?
I don’t know…maybe. Unfortunately, there are no reliable tests to prove actual infection and no preventative vaccinations for horses.
There are not even any reliable signs of infection, as the symptoms for Lyme in our horsey friends are the same symptoms of many other equine illnesses. In general, detecting and treating Lyme in horses seems to be a terribly mysterious and frustrating thing…even more so than in humans!
For those of you who want more info on what chronic Lyme disease is and what to do about it, I will leave you with some additional links at the bottom of the page that you may find interesting or useful.
But I’d also like to leave you with this bone to chew on: Even if you are in good health and have never had any of the symptoms of Lyme disease, chances are you know someone who not only has the symptoms but has the disease, even if they don’t know it yet.
Which, as I’ve written, is extremely frustrating, time-consuming, and expensive.
As time goes on, it becomes downright dangerous as these afflicted souls fruitlessly search for the cause of their illness, only to hit brick walls at every turn. Remember, Lyme is called “The Great Imitator” for good reason, as it mimics so many other very common diseases.
If someone you know has been treated for a specific illness but only grows worse, it could be that Lyme is the culprit. Remember, there are 300,000 to 500,000 new cases of Lyme disease per year in the US alone.
Think about: The fact that Lyme spirochetes have been shown to exist in other biting bugs (mosquitoes, spiders, etc.) besides ticks, and the evidence showing that bites from these critters were the cause of Lyme disease in many patients. The fact that the Red Cross does not screen donor blood for Lyme. The proof that Lyme can be passed to unborn babies. The strong evidence pointing to Lyme being sexually transmitted.
Once you take all these things into account, the colossal rate of infection begins to make a bit more sense.
Are You Among the Fortunate, Healthy Ones?
I have already urged those of you who suspect that you may have Lyme to seek help from a Lyme-literate doctor (and I included links below to help you find one).
Keeping all of this in mind, I would encourage those of you who are healthy and sound but know someone who is not, due to a treated illness that isn’t getting significantly better or a baffling “mystery illness,” to do two things:
1) Encourage them to be tested for Lyme (links below — some tests, and some labs, are far better than others); and 2) Be patient and empathetic — give them some grace, realizing that they’re not out to frustrate you.
They’re not wanting to stand you up when you had something planned. They’re not being lazy or trying to flip-flop, and they’re not hypochondriacs.
And they are definitely not “crazy,” in the derogatory sense. But as happened with syphilis (caused by another corkscrew-shaped spirochete), the Borrelia do have the capability to cross the blood-brain barrier.
Those whom this has happened to are not crazy, they are physically ill — infected with a relentless, merciless bacteria. Do you suppose living with destructive bacteria in your brain is a fun thing to have to do? Of course not.
You are in Charge — Now Take Charge!
And as is the case with any serious illness, in order to be truly helped you must enter the fray with eyes wide open, researching and arming yourself with knowledge.
Would you buy a car without first boning up on the make, model, and year you want to buy or if it’s used, learning its history? Or a house? Without doing what you could to find out any potential problems in the house or car before you make that big investment?
I’m guessing you would do your homework because you don’t want to get ripped-off or at best, inherit someone else’s problems that maybe they weren’t even aware of yet.
Then why would you leave your very life to chance? At the risk of nagging, I’ve said it before and I’ll say it again: knowledge is power. Write stuff down. Print stuff out. Compare. Ask lots of questions.
And if your brain feels like it’s about to explode, get someone who cares about you to help, and be your advocate.
Only you, or someone who cares, can be your advocate out there in the medical minefield. But even if you have help, only you can get things rolling, and ultimately your health and healthcare are up to you.
Please, if you take nothing else away from this, at least take this to heart: Your body is your body and no one else’s. Not your doctor’s. Not the hospital’s. Yours.
And they are not in charge of your life — you are. You are not their lackey. You are not their sniveling subject or their “project”. Just because they have more education in certain areas than you do, does not make them better than, above, or more important than you in any way.
God created us all equal, no matter our education, finances, or social standing. Remember, you don’t work for them, they work for you.
Hire or Fire
You hired them (or will hire them) to do a job for you, and if they don’t treat you well — medically as well as a bedside manner — you can reprimand or even fire them, and hire someone else.
I once went to a gastroenterologist who had the nerve to tell me that we don’t need stomach acid to help digest food. Right, and we don’t need opposable thumbs either. “You’re kidding, right?” I asked, attempting to pry my jaw up off of the floor, and knowing he wasn’t.
I was nice. I was pleasant — but I fired that turkey. So, I’m not suggesting you be rude or abrasive! Chances are, if you treat them with kindness and respect, they will treat you the same way.
But my doctor is so nice! Maybe so. But if he or she isn’t helping you to get better, wants you to do things that you believe are dangerous, or simply doesn’t listen to or value you as a person and a patient with the rights to health care done your way, you can always leave. They do not own you.
Empowering yourself, standing up for yourself, and making informed decisions isn’t always easy. But the good news is, for those who are diligent in spite of the frustration, there is help for those suffering from Lyme.
Find a Doctor
Support Groups: Online and In-Person by Area
Lyme Tests and Testing
http://lymediseasechallenge.org/testing/ (reasons why Igenex, above, is the best testing lab)
General Lyme Info
http://realfoodrebel.com/about-me/ (Website of a woman who beat Lyme, naturally)
Lyme and Pets
Note: I did not include any links for finding a mainstream, allopathic vet for your pet because you hardly need those links. Mainstream vets are everywhere. It’s the ones who have knowledge and experience in treating disease with something more than mere drugs, that can be hard to find.