Lyme Disease In My Family

Lyme disease is spiraling out of control. 2017 is supposed to be the worst year on record for new cases of Lyme disease and not just in Maine. Look at these pictures, can you tell me which of these creatures has Lyme disease?

The answer is all of them. That’s right, both my dogs and my 5-year old daughter have been positively diagnosed with Lyme disease, and my husband has tested negative even though he has been bitten by a tick and had the bulls-eye rash.

The treatment for each of my dogs costs $27 for one month of doxycycline, plus $49 for the blood test, and it takes 10 minutes to get results.

My daughter had 2 false negatives before being clinically diagnosed by a Lyme Literate Doctor (LLD) based on her history symptoms. She had a history of one or both knees just randomly swelling up and being so painful that she could not walk, straighten out her leg, or put any weight on it. After a week, the swelling would begin to go down, and after another two weeks she would be back to normal. This is called Lyme Arthritis, and is a fairly common symptom in children.

Her first Lyme test came back negative. Her second Lyme test came back “negative” per the CDC diagnosis criteria, but the physician we saw said that because 4 out of 5 bands they tested for were positive, plus the swollen knee you see in the photo they would consider her positive for Lyme and put her on a month of antibiotics. At the end of that month, her regular doctor said she was “cured” even though her knee was still swollen. So I jumped online and found a Lyme Literate Doctor to take her to that could definitively tell us whether or not she had Lyme and what we could do to treat it. My mommy-instinct told me a month of antibiotics was not going to cut it.

Currently, her treatment costs us about $1000 per month out-of-pocket because we do not have health insurance. I missed the open enrollment period for signing her up, so we have to go without insurance for all of 2017, and her treatment lasts until October of 2017. She is on 4 different antibiotics (mepron, amoxicillin, bactrim, and azithromycin), a medicine to protect the lining of her stomach from the antibiotics (Zantac), and a high dose prebiotic before bed every night (Theralac).

The first thing her new LLD told us was that we needed to change Pip’s diet by cutting out processed foods, most carbs, and sugars. Basically, a therapeutic ketogenic diet, which my husband was already on due to his recent return from Patagonia and his severe diet while he was gone. So the whole family changed over to keto the next day. I cleaned out all the shelves and cupboards and bought a cookbook. It wasn’t too hard, and there will be a future post regarding our life as a Ketogenic family.

This is seriously fucked up. Why is it so easy to diagnose and treat a dog, but not a human? A humans life span lasts many decades longer than a dog’s, and the ramifications of untreated Lyme disease in a human can be far-reaching.

Untreated/undiagnosed Lyme disease is painful and debilitating, and can eventually lead to organ failure, paralysis, and death in both humans and dogs.

I don’t have any answers here, only a long list of questions that no one can answer. Like, why can I get a vaccine against Lyme disease for my dogs, but not my people? Why is it so easy to diagnose Lyme disease in dogs, but it’s an uphill struggle to get a doctor to take you seriously when you ask about getting a diagnosis and treatment for your kids?

I’m certain my husband has it, too. He does not have symptoms, but I’ve seen the characteristic bulls-eye rash around a tick bite on him. That rash *is* the Spirochetes spreading outward from the bite. It is a 100% positive proof sign of infection, but he tested (false) negative, so he does not get treatment.

This is what a bulls-eye rash can look like, it’s not always obvious.


Our Lyme Literate Doctor told us that over 50% of the people who test negative for Lyme actually have it. The Spirochetes like to hide out in places that blood tests can’t reach, like cartilage. And they can even encyst themselves and hang out in the bladder to spread themselves further.

The other thing I learned is that if you have been infected with Lyme disease, you probably also have one or several co-infections too, along with the Lyme spirochetes because ticks are nasty little Fuckers that carry all sorts of diseases. I’d rather get bit by a rat crawling through a sewer than a tick. And the co-infections can mask the symptoms of the lyme. My Pip is being treat for Lyme, Babesiosis, Anaplasmosis and Erlichiosis. SHE’S 5 YEARS OLD.

Lyme can go into hiding during treatment, and it’s regeneration cycle takes about 6 weeks, so that is why we are treating her so aggressively. There’s no way to test her at the end of treatment to find out if she is cured, we just have to assume it worked and hope she doesn’t relapse on 5 or 10 years.

They say if you find and remove a tick within 24 hours of getting bit your likelihood of getting lyme is much lower, it’s best to remove the tuck before it is engorged with blood. It is estimated that upwards of 80% of ticks in maine are infected with Lyme and coinfectious pathogens. So if you get bit, and you have a bullseye rash, or the tick isn’t found for a day or two, get right to a doctor and start treatment, even without testing. The chances that 30 days of doxycycline can eradicate the disease go up if you get treatment immediately.

I didn’t know any of this when I moved to Maine 4 years ago. I had no idea how scary Lyme can be, and when Pip got bit I didn’t think anything of it. I didn’t know own better and now we are literally and figuratively paying the price. If this article helps even one person, it was worth the time it took to write it. There are some great resources out there, and I can provide links to them. I think I will make this a page so it doesn’t get lost in the blog as well, because this information will continue to relevant.

Resources:

International Lyme and Associated Diseases Society (ILADS)

Center for Disease Control : Lyme

The New Yorker: The Lyme Wars

Theralac

Under Our Skin (Lyme Documentary)

When Your Child Has Lyme Disease

Kids and Lyme Disease: How it Affects Their Learning

Lyme Disease Association

The Lyme Diet

#featured #Maine #grief #Family #love #ticks #life #ketogenic #lymedisease #lyme #learning

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