fda.gov
Because we have 6 members of the family with chronic Lyme disease (we live in New Hampshire, remember?) and because I’ve been writing about Lyme disease and its mismanagement in the medical community for years, people tend to contact me with questions about Lyme disease (and assorted co-infections.)
Now is the time of year that you hear about people who are sick with “one thing after another.” They’re having skin problems, joint issues, memory lapses, heart issues, shortness of breath, and an entire panel of other assorted symptoms. I’m hearing that many of these people are losing time from work, some are hospitalized, and all are in pain.
Almost always, the first thing they say when they contact me is “This has been the worst winter!” and “he was such a healthy kid until this winter.”
To me, this screams chronic Lyme. Now read me loud and clear, I’m not diagnosing anything and because Lyme disease can affect so many different systems it can mimic other diseases, like mold intolerance, so it could be something else. But *if* this is a winter like no other with regard to health, you SHOULD consider ruling out chronic Lyme disease.
Especially if you went outside during the summer or have a pet that went outdoors.
Why? Think about it. With Lyme disease there is a grace period after you are bitten. Sure if you were lucky enough you might have gotten the bullseye rash and received 2 weeks’ worth of antibiotics. But if you didn’t notice the rash or if the infection was not wiped out by the antibiotics (and it’s been proven that 2 weeks is not enough), then the Lyme bacteria sets up shop without interruption in your body.
If you are relatively healthy, it may be months before you even realize this is happening. And besides, who connects a tick bite in the summer to complications in the winter? Your sore knee is attributed to getting out of bed wrong one morning, your memory lapses just a sign that you are getting older. But then things like skin rashes break out and your heart starts fluttering enough for you to feel it. You can’t seem to catch your breath and you start noticing weird muscle twitches.
So you take yourself to the Doctors, who initially dismiss your symptoms because all the tests come back negative.
And when you go back because the symptoms haven’t gotten better or they’ve gotten worse, congratulations! You are now entered into the medical merry-go-round. Chances are you’ll be referred to a:
- Dermatologist
- Heart Specialist
- Orthopedist
- Rheumatologist, and let’s not forget the –
- Psychologist – because all of the tests keep coming up negative, so you must be making this up.
Even if you ask about chronic Lyme disease, chances are you’ll be laughed at:
- “There is no such thing as chronic Lyme disease.”
- “Two weeks of bacteria is enough to wipe out any bacteria.”
- “IDSA guidelines were followed when you were originally treated for Lyme, so you can’t possibly have it.”
And of course, my perennial favorite:
- “You’re just looking for attention.”
But here’s the thing, to date, the medical world only knows about 2 spirochete bacteria, Syphilis and Lyme disease. We know that Syphilis can set up shop in your body long term without symptoms. We also know that it crosses the brain barrier and can eat away at your brain (back in the day senility was considered a diagnostic symptom for Syphilis) The reason spirochetes are so destructive is that with their corkscrew like bodies, they can actually burrow into tissue that is not blood rich (like joints) or that has a barrier (like the brain) if tissue does not have a good blood supply or if antibiotics are blocked by a barrier then what you have is a losing battle.
In fact if you look up the symptoms of Syphilis, you’d find many of the symptoms of Lyme disease. If you had the poor luck of having sex with someone who is positive for Syphilis there is not a Doctor in the world who would think you’d be safe by giving you one tablet of antibiotics and yet, that is how some treat exposure to a tick and in southern New Hampshire where I live 76% of ticks tested are infected with Lyme disease so the chances are very high that if you are bitten, you’ve been exposed.
The CDC guidelines for treating latent (chronic) Syphilis are:
“Penicillin G, administered parenterally, is the preferred drug for treating persons in all stages of syphilis. The preparation used (i.e., benzathine, aqueous procaine, or aqueous crystalline), dosage, and length of treatment depend on the stage and clinical manifestations of the disease. Treatment for late latent syphilis and tertiary syphilis require a longer duration of therapy, because organisms theoretically might be dividing more slowly (the validity of this rationale has not been assessed). Longer treatment duration is required for persons with latent syphilis of unknown duration to ensure that those who did not acquire syphilis within the preceding year are adequately treated.”
And yet, the thought of another spirochete being treated long-term seems to be inconceivable.
It took 7 years of taking my son to 11 Doctors before we got a chronic Lyme diagnosis. By then his immune system had been trashed. We are still trying to manage his health. Since then 4 other kids and myself have been diagnosed and treated for Lyme disease with varying degrees of success.
I had years of symptoms. My Doctor (who had M.S.) was convinced that that’s also what I had. However after (finally) finding a LLMD (Lyme Literate Medical Doctor) and after 1.5 years of antibiotic therapy, almost all of my symptoms have gone away. That’s not how M.S. works.
But that is how Lyme disease works (if you are lucky enough to be treated properly.)
Just think what would have happened if I had believed in my original doctor’s diagnosis I would have been treated for something I didn’t have and the Lyme spirochete would have been allowed to run around unchecked.
That’s how people end up dying from Lyme disease.
As you can see, I’m quite passionate about this topic. I’ll be using this Wednesday time slot to write about Lyme disease, its symptoms, treatments, and I’ll try to answer any questions you might have.
In the meantime, if you suspect you or someone in your family might have Lyme disease, you’ll need to get informed. I typically tell people to begin by reading Cure Unknown and watching Under Our Skin.
There are other good references (Horowitz for example) but for now, those are the two best ones for getting started. Get informed, join a discussion, and become your own best advocate.
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Wendy Thomas writes about the lessons learned while raising children and chickens in New Hampshire. Contact her at [email protected]
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