It’s been a long while since I posted about Lyme but the disease is still a daily part of my life, something I don’t think most people understand or even want to understand. I was first infected, as far as I can tell, in 2014. I still suffer symptoms today. Now, most of the time I tell people I’m totally fine. Why would I do this? Because frankly this isn’t something most people want to talk about, and most people just don’t care. This doesn’t mean people are evil. What it means is Lyme is a disease that doesn’t make sense to many people, and our lives today seem to be as hectic as they have ever been. There is only so much bandwidth, so why waste time on data that doesn’t compute?
Now, I began to realize people didn’t really care in the fall of 2014. Of all the people I know in the world, the grand total of those who reached out to me personally during my darkest years I could count on one hand. This probably speaks volumes about me, but what it also speaks to is the absolute sales job that organizations like The Center for Disease Control and the American Medical Association have done on Americans. Lyme is non-dangerous, rare and easily treatable. This has been the flawed message since the
Here is an alarming read from last week’s Atlantic. A bad time to be a moose. More bad news? How about this. Need more? Okay, how about this baby.
I’ve also noticed an alarming trend among people I engage with in regard to Lyme. The “Oh, I had it, it was no big deal,” crowd. Of all these people I’ve yet to find one who was actually tested for Lyme. One hundred percent have said “Well, no, I never got tested but I’m sure I had it.” And when asked what they did to get over it the range of bizarre and idiotic treatments have left me speechless. One person said they were cured by eating banana peels. No joke.
Just know that Lyme is out there and it’s out there in places you wouldn’t have had to think about a few short years ago. Lyme is a
Another thing you might not know is how much time I spend trying to help other patients. Every week I communicate with people scattered all over the globe but mostly based here in the United States. People who can’t find treatment, people who can’t get better and people who are ready to give up. And remember, people in New England are having trouble getting treatment, and New England is ground zero for this disease in America. This is another topic met with complete skepticism, the same skepticism that allows this fraud to continue. Americans still want to believe this kind of thing wouldn’t happen here.
As you know, I love the outdoors. I always have and always will. But I do not leave the pavement without Lyme being front and center in my mind, and this means a park in San Francisco or a walk on the beaches north of Sydney. (Just read the first line of this story if you want to know how toxic this disease is to the establishment.) I lost four years of my life to this disease. And for all those people who said “Gee Milnor, you don’t look sick,” just know it was all I could do to keep it together at times.
At some point in the near future the powers that be will find it impossible to deny the reality of Lyme any longer. I just hope we find a solution before it’s too late.
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Dan – Sorry to hear about your continuing struggles with Lyme. I suspect that if the drug companies could find a way to market a “cure-all” pill, it’d get more attention and they’d charge $10,000 per dose. Quoting Wikipedia, “A vaccine for Lyme disease was marketed in the United States between 1998 and 2002, but was withdrawn from the market due to poor sales.”
When I was younger, insulin was $10-20 for a month’s supply. Now they charge about 10 times that amount. I’d be scared and broke if I didn’t have health insurance, which a lot of people in the US still don’t. The healthcare system in this country is a serious mess.
Hope today’s a good one for you…
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Jim,
Yep, and the vaccine wasn’t profitable enough. And some said not very effective. The Germans have a vaccine. We are allegedly building a new one.
I woke up last Friday and before I got into the shower I saw that a tick had embedded himself on my abdomen. I was in the woods the day before. I went to Kaiser Urgent Care where they removed it and started me on a 21 day Antibiotic. I got a lab report this morning that it was a deer tick. I am lucky I saw the little guy and was able to get medical attention immediately. Kaiser took an image of it and labeled it and it is now a part of my medical record.
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Hey Steven,
Yes, you are very lucky. I went to Kaiser in California and had a very different experience. I asked my Kaiser doc if I could see someone in infectious medicine. She said, “Sure, but why do you want to see someone.” “Because I have Lyme,” said. She literally flinched. She then started filling out the form but stopped and said: “I can’t do it.” Kaiser sent a letter to their doctors in Southern California telling them not to diagnose or treat Lyme. She called me that night and apologized. She said that for her to treat me I would have to submit to a basic blood culture. When I said “You can’t test for Lyme with a basic blood culture,” she said, “That’s exactly right.” Meaning, I will test negative and then they won’t have to treat me. Nobody at Kaiser had ever called me on the phone but she did, twice, apologizing both times. I called my LLMD at the time and asked if he had ever heard of this happening. He said “Yep,” then started naming the other medical groups who sent out the same letter to their docs. Heck, even the nature preserve by my house in CA had tick warnings on the billboards around the park. Then they disappeared. When I inquired they said “We never had signs up.”
Dan, have you read this article on the NYT:
https://www.nytimes.com/2019/06/27/well/live/lyme-disease-children-treatment-diagnosis.html
It was a bit hard to swallow for me, considering the weight anything written on the NYT has, I cannot imagine what you reaction would be (luckily many commenters are also very critical of the article, but who reads the comments anyway? Surely the NYT should feel the moral obligation to publish a counterarticle to this one).
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Alessandro,
These articles come out as a counterbalance to the reality of Lyme. They either send out a family who claims “Ya, no big deal.” Or they send out a “medical professional” who doubles down on the “rare, easily treatable and nondangerous,” ideology that the CDC has pawned off for forty years. You also run into a fair number of people who claim to have Lyme but were never tested. And they claim a staggering array of odd remedies. One woman in LA told me she had Lyme, ate banana peels and cured herself. When I asked if she was tested she said: “Tested?” “No, but I’m pretty sure I had it.” These people continue the myth and the sick people stay sick. All I know is, based on five-plus years of living with the disease, I don’t trust the CDC or the NYT. There is just too much bullshit.
I have worked in an eye clinic as a photographer and docs mentioned one of the downsides of Lyme is eye damage. Could be worth getting regular eye examine with OCT and fundus photography considering your job. Lots of opticians offer this service. Best wishes from Ireland
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Garrett,
That is interesting. One of my first symptoms was loss of vision. I could not get anything in focus with or without my glasses.
That must have been very worrying for you Lyme is very hard to diagnose so they probably thought you had diabetes or some optic nerve disorder. Just keep well its a long term disease don’t get frustrated as many doctors have little experience in treating it.
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Garrett,
Yep, misdiagnosed five times. And when they found out what I had they didn’t even want to discuss it.
Hi Daniel,
Just stumbled upon your blog and, as a newly diagnosed Lyme patient, I’m searching for answers to of and been ill ever get my life back. Like you I don’t know when or where I was bit, could have been Oregon or Colorado or Texas. I have been sick with weird issues for a year after having parathyroid surgery and as cliche as it sounds I went to more than 20 doctors, did tons of tests and scans and everything came back normal. My naturopath said let’s do the Igenex test after my Elisa and WB came back negative and low and behold my western blot lit up with all 5 bands. This was 4 weeks ago. I’ve been treating with an LLND now for 3 weeks with 2 different antibiotics and a ton of supplements to support my gut and immune system as well as a strict and tiresome detox regimen. I feel like utter shit. Suicide enters my mind more often than not every day. How did you get through this? How did you make it to the other side? Thank you for writing this blog🙏🏻
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Heather,
First, you will get there. Easy to do down a dark road but don’t because it will make things worse. Keeping your mind strong is a part. You are doing right. Meds and protocols. I love good CBD to help with inflammation. I also love my little $200 portable sauna so sweat things out and help with detox. Also, find out if you have any co-infections and think about treating those first. And, boost your overall immune. My immune is faulty and has been my entire life so building it up was key. Want more info, email me!
Hi Daniel,
Just stumbled upon your blog and, as a newly diagnosed Lyme patient, I’m searching for answers if I will ever get my life back. Like you I don’t know when or where I was bit, could have been Oregon or Colorado or Texas. I have been sick with weird issues for a year after having parathyroid surgery and as cliche as it sounds I went to more than 20 doctors, did tons of tests and scans and everything came back normal. My naturopath said let’s do the Igenex test after my Elisa and WB came back negative and low and behold my western blot lit up with all 5 bands. And yes my pcp scoffed at the test and told me if I didn’t have a rash or see the tick then I didn’t have Lyme. Unbelievable idiot. This was 4 weeks ago. I’ve been treating with an LLND now for 3 weeks with 2 different antibiotics and a ton of supplements to support my gut and immune system as well as a strict and tiresome detox regimen. I feel like utter shit. Suicide enters my mind more often than not every day. How did you get through this? How did you make it to the other side? Thank you for writing this blog🙏🏻
Daniel,
While living in Connecticut in the 70s a friend’s five year old daughter was diagnosed with one of the firs cases of Lyme disease. Her symptoms included fever and swollen lymph nodes on her neck. Now a grown woman she has no ill effects.
Unfortunately the way the medical profession is constructed these days you best be your own health advocate. Wishing you a full recovery.
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Malcolm,
That is one of the tough things about Lyme. Each person seems to have a unique experience.