This might have been the day I got Lyme Disease. Or maybe it wasn’t.
The perils of Lyme Disease are so complex, so numerous and so diverse it is difficult to even begin to consider where to start. I’ve been asked many times to write about my experience, and have even been asked to go on camera, but I have been reluctant until now. Why now? No one reason specifically. I am feeling slightly better. I did change this site to include this tab, but most importantly I still hear so much misinformation coming from the government and medical communities that I feel there is a strong need to voice what is REALLY happening. Lyme isn’t rare, non-dangerous or easily treatable, no matter how many times the medical community casually tosses this opinion in their press releases or official statements. Considered by many to be one of the most misdiagnosed diseases in the world, the number of new cases annually is possibly far higher than we have been led to believe. I’ve had all kinds of illness in my life, including things like meningitis and Epstein-Barr, and I can tell you that Lyme Disease is infinitely worse. If I’m awake I’m dealing with it. There was simply life before getting Lyme, and the life I’m living now, where each day is a mystery of symptoms and oddities that impact every breath, every stride and every decision. The Lyme Community is vast, and now stretches around the globe, even while certain governments still deny the existence of the bacteria or the idea that Chronic Lyme is real and not a figment of someone’s diseased mind. I don’t think we faked the Apollo moon landings. I don’t think Kennedy was killed by some far reaching conspiracy. I’ve never seen Bigfoot, and I’ve spent years in the woods, but with Lyme, all I know now is that it sure seems like someone has something to hide. Let’s hope, at some point, the truth emerges. I fear that at some point in the near future the bacteria will morph and become something that kills quickly and without prejudice. Lyme is the tip of the iceberg with tick-borne illness. We’ve let it go this long. What’s next?
In 2014 I traveled to Australia for work. At the end of three whirlwind weeks of business I flew to Perth and connected with two friends, photographers, and then proceeded to travel thousands of miles through The Outback, camping, exploring and making pictures. After returning to California, exhausted, I went back to work and kept up with my lifestyle if you will. Cycling, hiking, paddling, etc. I drove to Big Bear, did a fifty mile bike race, completed some mountain hikes and even attended Paddlefest where I got roped into a Crossfit contest of sorts that just about killed me. Shortly after I traveled to New Mexico, where I live part-time, and also continued with my lifestyle. Cycling and many hikes, much time in the woods. My next move was on to New England.(This is where your skin begins to crawl.) I not only went to New England, Massachusetts, New Hampshire and Maine, but I also went INTO THE WOODS.(Wouldn’t do this now.) I wore long sleeves and long pants tucked in my socks. Lots of bug spray, and everyday my wife and I did “tick inspection.” Nothing. Nada. Clean.
Exploring The Outback, 2014
I’d been in New England for approximately two days when I felt a pain in my jaw. A strange, grinding feeling in my TMJ joint. It wasn’t painful, just odd. I also began to feel strange mentally. Foggy. Not entirely off but enough for it to begin to really bother me. I also started to feel tired, but not like a normal tired. More of a DNA level tired, which at first reminded me of Epstein-Barr. I didn’t tell anyone, just dealt. I ran the standard potential causes through my mind but didn’t think much of it.
No tick bite. No joint pain. No rash.
A few weeks after returning home I wasn’t getting any better. I was sleeping twelve hours a night then sleeping much of the day. I was still in denial and tried to maintain my physical life. On a Saturday morning ride I was so mentally foggy I “came to” on my bike, five miles from my house, riding with other people, but had no idea I was actually on a bicycle. I didn’t know where I was, or who I was with or how I got there. I was officially freaked out.
I called my doctor, who is a friend and someone I really like. Infectious disease is not his specialty, and many of the doctors in California still believe you can’t get Lyme in the state, so testing for Lyme was part of our original set of tests, but I was yet unfamiliar with how difficult it is to test for Lyme, and how a basic blood culture will almost always come back negative. I met with the doctor and we did a full line of tests. Everything was normal. I got worse.
My primary doctor sent me to a neurologist.
Again we dove into a variety of tests from brain scans to nerve damage tests. I also inquired about testing for Lyme, which was added to our list, but again only as a basic blood culture. The tests came back negative. All of them. And then something strange happened. I was diagnosed with something that should have shown up on the tests. “But you tested for that,” I said. “Okay,” the doctor said. “You don’t have that, you have THIS.” Again it was something that should have shown up on the tests, and again I said “Wait, you tested for that, let me see the results.” Again he said “Okay, you don’t have that you have THIS,” and named ANOTHER disease that would have shown up on the tests. Now I was confused but also starting to get a little ticked off(pun alert). In a matter of minutes he diagnosed me, or misdiagnosed me, with five different diseases, back to back to back. I was almost speechless. And then I asked about Lyme. And this is when things took a turn. He stood up from his desk, put his hands in the air and said “I will NOT talk to you about Lyme.” It was then made clear to me that it would best if I left their office. His assistant apologized to me but did nothing else.
About this same time my wife went on a business trip to New York and while there ran into a photographer friend. He asked about me, she told him I was suffering from some strange illness and he asked about the symptoms. Within minutes he said “He’s got Lyme and he needs to get tested NOW.” Suddenly I had a fire under me, an target disease to aim for, but there was still the question of treatment. I switched insurances and went to a new doctor. The new insurance was a massive medical organization here in California. I took the first appointment, sat down with my doctor and said “Can I see someone in infectious disease?” “Sure,” she said. “Why do you want to do that?” she asked. “I want to talk to someone about Lyme.” When I said this she immediately flinched, and the look on her face went from happy to concerned. “Aahhhhh, okay,” she said and began filling out a form, but within a few seconds she stopped, looked at me and said “I can’t do it.” “Why not?” I asked. “The organization sent all us doctors a letter saying that we shouldn’t talk about or diagnose Lyme, and if someone comes in saying they have Lyme they have to prove to us they have it,” she said. “How do they prove it?” I asked. “With a basic blood test,” she answered. “You can’t test for Lyme with a basic blood test,” I said. “You’re exactly right,” she said.
I sat for a few seconds taking this in and then said “Oh, I know what they are doing.” “They are blowing me off because they don’t want to deal with Lyme.” “You are exactly right,” she said. Later that night this same doctor called me twice, at home. “I’m so sorry,” she said. “I can’t believe they are doing this to you.” I went online and began madly researching Lyme, and what came back at me was something out of a bad dream. My situation, and even stranger things, being repeated countrywide, and in some cases, other parts of the world. Denial, evasion, misinformation, misdiagnosis. I began to ask friends, family, anyone I could find about Lyme and it seemed that everyone had a story. A friend with Lyme, a family member, an entire family, an entire neighborhood. New England was the epicenter, but people rang in with stories from Japan, Canada, Germany, France, Denmark, The Netherlands, Argentina, Alaska, and yes, many, many stories from Australia, New Mexico, California and almost every point in between. This was NOT a rare disease and it certainly wasn’t limited to New England. I also started to learn that refusal to treat Lyme was not limited to one medical organization. It was widespread.
Through an online organization I found an LLMD, Lyme Literate Medical Doctor, in San Diego and made a call. “We are booked about six-months out,” I was told. By this time I knew enough to realize that the sooner you start treatment the better chances you have, although there is no cure for Lyme. “I’m driving to your office tomorrow morning, and I’m not leaving until you see me,” I said. “No, don’t do that,” the receptionist said. “I’m coming,” I said. “Okay, okay, fine, he’ll try to work you in,” she said. My first meeting with the doctor was TWO FULL HOURS. I answered page after page of very specific questions and also gave blood for a test called The Western Blot, which isn’t without it’s detractors, but still remains one of the better ways of testing for Lyme. This test is only administered by two labs in the US, at least that was what I was told at the time. Two weeks later the results came back. Positive for Lyme.
I began triple antibiotic treatment right away, and remained on them for two full years, something I wouldn’t do again. Today I would do an antibiotic IV and would pulse the treatments on and off. Lyme has incredible amounts of DNA and is one of the smartest bacterias around. Recent reports say that nearly half of all new Lyme patients don’t respond to antibiotics, and in some cases are made worse by antibiotic treatment. Lyme is VERY smart, VERY aggressive and VERY elusive, and within twenty four hours of being infected the bacteria can live in three forms in the human body. Cell, cell wall and cyst. Getting multiple antibiotic treatment for Lyme still isn’t easy in some places, and was only recently made kosher by Cuomo in New York where Lyme has been raging for decades.
Over the subsequent months I continued my treatment and even did hyperbaric oxygen treatments, at Lyme depth, where I spent an hour and forty minutes a day in a hyperbaric oxygen chamber. It was all I could do to not freak out inside the machine. My body would burst into pools of sweat, in seconds, and my mind raced about what would happen if an earthquake hit while I’m sitting in a pure oxygen state. BOOM.
My life was turned inside out. I couldn’t do anything other than get through a work day and even that was the limit of my ability. Right before I was diagnosed I had purchased a new bike and this new beauty sat in my library for almost a year before I could touch it, let alone ride it. On top of it all I was working in San Francisco and started peeing blood. Never a fun thing. I was diagnosed with a kidney stone, something I’d had before, but this one was in a position where they needed to go up and get it. And yes, that is exactly what it means. Think medieval times. As I as being prepped to be put under a nurse very sheepishly creeped into my room said “Hey, I noticed you put Lyme Disease on your forms.” “Yes, sure,” I said. “Don’t tell anyone you have Lyme,” she said. “If they find out they will ask you to leave the facility.” “What?” I asked shocked. “I don’t know why it is, and I’ve never seen anything like it,” she added. This wasn’t the only strange event that transpired, and the more people that found out I had Lyme the more stories I began to encounter. Denial, refusal of treatment, refusal to diagnose, etc.
I also began to learn the incredible range of Lyme itself. The hundreds of symptoms, and the range of infection, treatments and relative ease at which some people were able to achieve asymptomatic status and others battled for years with no success. Strain type, where someone was bitten, how quickly was the tick removed, how quickly was treatment started, the age and shape of the person involved, the immune system of the person involved, the co-infections that were acquired at the time of infection(A very common thing.) All of these things were critical, and each person’s Lyme story was an unique as a fingerprint.
I also began to learn that there were a lot of strange stories circulating around Lyme, some that were out of right field, or left field, or outer space. And many people who knew someone who knew someone with Lyme had stories like “Oh ya, my friend had it and she ate banana peels and it went away.” “Really, did they get tested for Lyme?” “No, but they were pretty sure they had it.” I realized that these stories were making things worse. With the difficulty of being tested and the misdiagnosis the playing field of Lyme was a minefield.
I continued with my treatments. Meds, oxygen, infrared sauna, anything I could try and do I did. ALL OUT OF MY OWN EXPENSE. None of the Lyme docs took insurance. And none of the medical doctors I spoke to wanted to deal with Lyme. Most were just ignorant, knew nothing about Lyme outside of what mainstream medicine said. “Oh you can’t get Lyme in California, you must have something else.” Within months I knew far more about Lyme than the traditional medical people I was speaking to.
I was interviewing a photographer in downtown Los Angeles and his assistant said “Oh, I have Lyme too.” “And my brother has it and our other roommate and my dog.” “We all got it in the Sacramento foothills.” I ventured back to New Mexico and was hanging out with another artist and his assistant said “My two best friends have Lyme.” Another friend in Santa Fe approached me and said “My mom had it and it went untreated for so long it ultimately led to her death.” I also began to hear the names of celebrities and politicians who had Lyme. I went to the beach in Newport with a friend from New Mexico. “I had Lyme too,” he said. During a visit to the Lyme doc I talked to a mother and her two boys, all with Lyme, who moved from New Jersey to San Diego “In hope we don’t get reinfected,” she said. “We lived in a gated community in New Jersey with 160 houses and every house has at least one Lyme patient.”
And what do you hear about this in the media, from the medical community? Very little. Downplay.
But what has begun to emerge are stories about new bacterias, new tick-borne illnesses that are killing and killing quickly. Kansas, Oklahoma. They get a little play and then they disappear. The nature preserve near my house in Newport suddenly has tick warning signs posted at trailheads. Then, just as quickly, they disappear. A friend does a shoot in Banning Ranch and said “We were covered with ticks.” Another friend goes hiking at Joshua Tree and picks up a tick. Another friend in New England goes hiking, gets a tick and gets Lyme. A friend in Boston calls, “My two best friends have it now and so does my mother-in-law.” “It’s so bad now at the hospital that it’s the first thing they test you for.” Another friend in New Mexico tells me “I left New York because of Lyme, all of my friends were getting it.” I attend a running training camp of sorts and talk to a Marine who lost both legs in Afghanistan. “A lot of guys got Lyme while we were training but we were told never to talk about it.”
I know what you are thinking. Why? This doesn’t make sense.
I’ve been asked the “Why?” question for the past three years and I have no concrete answer. I know that the insurance companies want nothing to do with Lyme. They want patients through an office in fifteen minute intervals, so Lyme doesn’t fit the mold. Big pharma companies also don’t want Lyme diagnosed because they don’t currently have a profit center tied to the disease. No way to maximize profit. Yet. Rumor has it a new vaccine is on the way, and a vaccine did exist in places like Germany, back in the 1990s, but allegedly it is no more. This situation also exists because of us, the public. We are passive and we don’t care. I don’t mean people are evil, but we are overly busy and this doesn’t lend itself to getting involved. If you only listen to the mainstream media, the medical community press releases you would think Lyme is no issue at all. The ONLY thing that spiked calls in my direction was a realty TV star getting Lyme. Suddenly it was real. People are busy, have jobs, children, stresses and if you don’t have Lyme you have NO IDEA who bad it is. I’ve never even explained to my wife or family just how bad it is because I don’t think they want to hear it. I probably wouldn’t either. I consider Lyme my second full-time job. I work, am a husband, and then in the background I have another full-time posting that never ends.
Okay, a few things that have helped. Diet. I eat no corn, alcohol(You can eat it if you get creative.), gluten, dairy, sugar or caffeine(I cheat with Mate´). This was an easy choice and I instantly felt an improvement. Now, this could have been because these items all inflame the body. Either way, it’s a lifetime goal now. Yoga. I do thirty minutes of yoga everyday. A routine that I developed, and a routine I will be sharing here on Shifter. This is both a mental and physical benefit. Not my first dance with yoga, but this core exercise is the most important thing I do all day. Exercise. I wasn’t able to do anything for a long time, but now I am back to running, hiking, paddling and riding. Mostly riding. Anywhere from 10-70 mile rides. At first I was able to ride but would then crash hard for several days. Now I can string back-to-back rides and don’t crash, so things are looking okay at this point. I still can’t press myself like I did before, but at least I’m sweating it out. Sleep. Oh baby do I need the sleep. Ten hours is best, but eight or nine is standard now. Looking back I’m fairly certain I lived sleep deprived or many years. Sleep now is SO FANTASTIC. I’m boring. I’ll tell you right now. I rarely go out, don’t socialize much anymore, outside of work, and just can’t deal with the noise of our culture. And finally, CBD oil. For those who don’t know, this is the medicinal side of the marijuana plant, which also happens to be a anti-bacterial, anti-inflammatory, which I felt IMMEDIATE benefit from within five minutes of using it the first time. Now I use it three times a day. There are a lot of lesser CBD options out there, but 20:1 pure CBD oil in a vaporizer is what I use. All of these things will be further flushed out on this site, over time. I will also detail the supplements I take and some of my favorite foods for anywhere, anytime. Also, this might seem trivial but I don’t believe it to be. I deleted my social media accounts three years ago. I can’t imagine dealing with Lyme Brain(intense fogginess) and being on social media at the same time. Heck, even being on the internet and having Lyme Brain is a nightmare. Just delete them. Cut them out. You will be far happier. I also read a lot and I try to meditate, which is a slippery slope because I know that mentioning that word will turn certain people off, but don’t think of meditation in a classic sense, unless you want. Think about it as simply clearing your mind, daily. Could be while you are in an elevator, or sitting in traffic or even sitting while having your morning coffee. This is like hitting restart on your brain. More on all of this later.
This is my story and I’m sticking to it.
Endeavor to persevere.
DRM
Comments 39
Daniel, thank you for sharing your story. I believe that our system of medicine is thoroughly corrupted by money and politics. I’ll be watching for your followup posts.
Author
Thanks Tobin,
The new site is coming along. A bit more work to do but wanted to start writing about and featuring things from the rest of my life.
Woah.
Thanks for the post.
Thank you for this post. I found it very encouraging and I’m not even remotely I’ll!
It’s amazing what the human body can endure when one perseveres, and how creative we can be to find ways to survive and adapt. I love how you find what works for you, and go for it.
I think that sometimes we can get caught up on FOMO (fear of missing out) when we socialize less, and personally choose to bring our inner world into focus with dedicated clarity – I know I do! But we really owe it to ourselves and our bodies to take care of our health, and personal growth or needs.
Author
Ada,
It’s easy to get lost in daily life. Work especially, when the work of today is so invasive. It’s easy to wait for something bad to happen before you begin living the life you really want to live. Getting sick was bad, but also provided clarity on a few things.
Ouch, I’m very sorry to read this. I know very well what a tick can do. I live in the northeast Italy and there’re plenty of ticks in the mountains. I’ve been infected two times and as you know an antibiotic treatment was necessary. As further carefulness four years ago I even made the TBE (Tick-Borne Encephalitis) vaccine and now every end of the year I make the lyme check test.
Good luck man!!!
Author
Walker,
So you got a vaccine or Lyme? Or just Tick-born disease in general? I have a friend in Germany who got a vaccine for Lyme in the 90’s.
I mean I only got the Tick-Borne Encephalitis vaccine. As far as I know there’s no vaccine available to prevent Lyme desease.
All the best,
Author
Walker,
Ah, okay. Not even sure they offer that here. We had a vaccine for Lyme but it went away in the 90’s.
Daniel,
thank you for your story. I don’t know if this is adding anything to what you already know but here is a new research article by Dutch researchers published today in New England Journal of Medicine:
http://www.nejm.org/doi/full/10.1056/NEJMoa1505425
all the best/Mattias
Author
Mattias,
Very interesting. Thanks for sending. These studies are so illuminating. Encouraging and scary.
You’re definitely on the right track with all of the above – and Yerba Mate’ RULZ!
Have you looked at Nightshades as another possible inflammatory as well? They are for me and I only get to consume them once in a blue moon. Legumes are another potential inflammatory (beans, peanut butter, etc). My sister is a Nutritional Therapy Practitioner and she helped me find all sorts of dietary issues that were making life difficult to deal with. It pretty much put me on a fairly strict diet. Think about any meats you consume – are they corn fed or pasture fed? Believe it or not, Corn fed livestock causes me all sorts of grief. We can thank Monsanto and their like for causing these health issues to happen. CBD and medical cannabis is what has helped me contend with the chronic pain I experience daily (Not sure if it’s Fibromyalgia or what)
Be well dude – talk soon!
Author
Cliff,
I’m on a very strict diet. Have lost about 15-20 pounds. I’m just under 160 now, which is oddly enough the target weight for someone my size. 5.11. No corn. Only organic, grass fed beef. CBD is still mostly unknown here in the US. Hard to find the good stuff.
Up here in Oregon, no problem finding CBD and its variants, but that varies from state to state and trust me, CBD/variants is a part of my own healing regimen. Have you done any gut healing protocols? L-Glutamine is another part of my regimen for addressing leaky gut it’s a big component to removing the chronic pain I go through on a daily basis.
Author
Cliff,
I use Glutathione and Ubiquinol amongst others, but no Glutamine. And no, not much on the gut protocol outside of aloe and probiotics, but this goes back many, many months and years. Tried to maintain as I go.
Hi,
I am so sorry you are experiencing this! I find myself more paranoid of the woods when I read that you guys were checking each other for ticks so carefully– on the other hand, it sounds from the rest of your story like you could have picked it up somewhere other than New England, when you weren’t thinking about it. At any rate, what I wanted to say was, I read this truly amazing book called Plant Intelligence by Stephen Buhner…really beautiful, fantastic. Having finished it, I immediately went looking for all his other books, and he has one on Healing Lyme Disease. He has a very different take on medicine/sciences than the standard. Maybe it would be helpful? I hope so!
Author
Zoe,
Wow, thanks for taking the time to write. The truth is I don’t know where I got it. I could have picked it up in Australia, New Mexico, California or New England. I’m guessing here, but I THINK it was probably bitten on the head, under my hair, and just didnt’ see it, or see a rash. My only doubt on this guess is the fact I would have had to get bitten on my first day, and I was armored up that day, and then would have had to have the effects begin that same day. It seems a bit fast.
I have a friend who was in the forest a lot over here, went to get tested when he felt ill, and already knew more than the doctor after doing his own research online. Luckily it wasn’t Lyme disease.
Just checked the Japanese governments guidelines on Lyme (last updated in 2012). Right at the bottom of the report it says that a vaccine has been approved by the American FDA but not implemented.
There’s a recommended list of treatment that I guess you’re already familiar with but just in case:
http://www.nih.go.jp/niid/ja/kansennohanashi/524-lyme.html
Author
Thanks Sean,
We had a vaccine in the 90’s. It was rumored to be not that effective and not that profitable, hence no more vaccine. However, a friend used to work in big pharma and he said there is a new one on the way. Fingers crossed.
Hi Daniel,
sorry to hear this. Sad story. Definitely saddening to read how Lyme patients are being treated in the US.
I currently live in the Black Forrest of Germany. We have many ticks. So far my family has been lucky, apart from our cats. In Germany we distinguish mainly between 2 tick-diseases: First the tick-borne encephalitis, for which you can get a vaccination. Most of us get the vaccination. It’s standard procedure at the doctor. A triple-shot over several months, the last one after 1 year.
The second is the borreliosis. There are is no vaccination available for borreliosis. This – if I’m not mistaken – is what you’re talking about. But this can be treated with Antibiotics. Treated yes, cured I don’t know.
I’m by no means a doctor or have any deep knowledge about this. I just want to tell you, in Germany this is pretty public information. You can find a lot on the internet. Doctors will help and treat you. And there are most-likely some good English-speaking doctors available. If you ever need any assistance, drop me a line.
Cheers
Andy
ps. nice photographic work – this is why I came to your site.
Author
Andy,
Yes, I’ve heard of that first vaccine. A friend here in the States got it, he’s also German. The other, no cure. And now 50% of people who take antibiotics get worse not better. The government and CDC have denied and evaded for decades and now we have an aggressive bacteria that can morph and adapt. And now we have ever more deadly tick-borne bacteria.
In Australia, if you have it you are screwed as the medical system is in denial about it. Medicos claim as we dont have the same ticks we dont get the same lyme inducing bacteria so it doesnt exist. But the fact that ticks here make people very sick, and have bacteria related to the family that cause lyme is ignored. The below link is to a show that played last night about lymes . Most depressing to watch and see how they deflect from lymes and dont do anything for patients. Im going on 2 years now trying to get the right treatment and will be going for a while longer.
http://www.sbs.com.au/news/insight/tvepisode/tick-sick
Author
Andrew,
Yes, Aussie Gov isn’t keen on diagnosing Lyme. I spoke to many people when I was there who were “tick sick.” One guy said his wife got a tick bite on her head and had been sick for two years. Joint point, fatigue, cognitive issues, but he said “But my doctor said we don’t have Lyme.” There are only a few countries in the world that are addressing this. The US is in denial too, but here it feels like it’s gone further than that. This is something they have been downplaying since the early 1970’s.
Daniel,
I just ran into an old acquaintance who told me his Lyme story.
He has been using the IV antibiotic treatments for awhile, but now is most enthusiastic about bee sting therapy. According to Apparently, there is a “legendary” instance of a woman who got entangled in a swarm of bees, and was repeatedly stung. As I remember it, previously in her life, she had had a bad reaction to bee stings, and expected this swarm entanglement to generate an anaphylactic reaction, but instead, she started having relief from her neurological symptoms.
I relayed this story to someone the other day, and he said that he heard this woman interviewed on NPR.
My guy claims that he now has a dozen or so bees applied to his back, along his spine, as therapy.
Is it therapy, remedy, folk medicine or Placebo Effect?
He believes it works, and as Andrew Weil said, “What’s wrong with Placebo Effect?”.
Best of luck dealing with this .
Author
Hey Jimmy,
Yes, bee sting therapy is a hot topic, at least in some parts. There is a therapist in my neighborhood actually. If you do bee sting you really have to do it. Staring with two stings a day then building up. There is a great article out there about the woman you mentioned. She lives in SoCal as well. There was a doctor in Brisbane who first did the testing with Lyme bacteria and bee venom. I can tell you that bees HATE me now. They go out of their way to get me. I get stung all the time, in the middle of other people who aren’t touched. A beekeeper friend told me the bees know I’m sick.
Wow, just think if all this is intentional.
Knowing you are ill, bees purposefully sting you, simultaneously creating a healing response, but then they die in the process.
That is downright mythological.
Author
Jimmy,
I keep thinking it can’t be real.
Daniel,
I’m amazed to have read about your experience with Lyme. My niece has been struggling with it and has lost 2 years of high school due to the lengthy process of misdiagnoses, denial and then, finally a long, hard road with antibiotics and treating co-infections that have also wreaked havoc on her system. I keep thinking that an awareness campaign needs to take root, but I wouldn’t know where to start. Is there any such campaign getting a start somewhere? It looks like you last posted about this in early 2016 and I’m wondering how you’re doing.
ps – I randomly happened upon your post because I’m starting the process of self-publishing a 365 photo project and was checking out your Trade Book video tutorial on Blurb. You mentioned your blog which led me here. I’m looking forward to exploring Shifter more.
Author
Yvonne,
There are a lot of awareness campaigns but you are competing for attention with things like the news, politics, social media, Hollywood and you won’t win. NPR ran a piece recently about new tickborne illnesses. This is what it will take and it will happen soon. You will have a new tickborne illness that kills quickly and then orgs like the CDC and AMA will no longer be able to ignore, deny, evade, lie, etc. And famous people getting it. Every time it happens there is a brief flutter of talk and then it dies down once again. I’ve had ZERO luck with national Lyme orgs either. They are heavy with red tape and filled with people who don’t return email. Sorry to hear about your niece. For those of us with “lost years” to out life it’s painful to know there are others going through this.
I’m going pretty well. Not that I don’t think about it, and feel it, all day long everyday, but I’m learning to cope. Just know that NOBODY around you will understand, even those who say they do. If you don’t have Lyme you can’t know. And Lyme is like your fingerprint, a unique mark on each individual, so your Lyme may or may not be my Lyme. Expect little other than arrogance, denial and angry from mainstream medicine. Yoga, diet, meds, IV’s, etc. All good. There is no cure. Build your immune system first and then start addressing the rest.
Wow, Daniel. Thanks for sharing, I am reading more about it now.
I am glad you are recovering. Tomorrow brings so much potential.
Author
Cody,
It’s a bummer…
I got Lyme about 15 years ago in Northern California. I saw the bite and rash but not the tick. I did not know what it was. The symptoms didn’t show up for several weeks. I came home from jogging and my thighs had a tingling sensation. This went on to shoulder and arm pain.
I was able to locate a Lyme knowledgeable doctor in Ukiah, California as I own a ranch near there. He put me on long term antibiotics. I took doxycycline and then zithromax. I learned to eat some yogurt with live bacteria every once in awhile to keep the good bugs alive in my stomach, other wise I had a dull stomach ache.
It took a long time, probably almost a year of drugs to get better. The last to go was the arm and shoulder pain, mostly noticeable at night or early morning in bed. During the day I could make it go away by working my arms in my job more than normal. Extra blood flow or something made it feel better.
Now, I have no symptoms. I did suffer nerve damage in the muscles of my hands which causes me to have lost some small muscle control. Hard to turn a car key in door or ignition. Hard to pick-up small pill size objects or type. Was it the Lyme or the drugs? I don’t know.
The good new is, you can get over it. What did I learn…
Find a Lyme doctor. It is hard, but you can find them. Join a Lyme internet group. Choose carefully, lots of miss-information out there. If you get bitten, save the tick. Keep him moist in a plastic bag and have him tested. The human test is poor, the tick test is much more reliable. Only go on drugs if the tick is positive for Lyme.
Don’t go in high weeds to work without wearing one of those disposable white jumpers you find in hardware stores.
Remember with treatment you can get better.
Author
Hey Bill,
Thanks for the information. It’s been four years for me. I’m pretty good. Still have things from time to time, but overall…okay. I did meds, hyperbaric, IV’s, etc. Changed my diet, get more sleep, etc. It’s a battle, for sure. Glad you are doing well. I’m in Wyoming walking in all kinds of stuff, and believe me, it’s front and center in my mind.
I found your site because my husband wants a truck like yours and was looking at images. We both do lots of outdoor stuff too and photography, I was in bed for a year and sick for 6 years, now active but limited and maintaining as well, very long story, glad you’re doing better, self research and treatment seems to be the best way. Blessings, Tanya
Author
Tanya,
Have encountered two more Lyme folks over the past few days. Sooooo many people suffering. All being treated with suspicion and contempt by their medical providers.
Thanks for sharing your story. I too have chronic Lyme. I’ve been all over the country, Europe, Italian Alp hiking, Central America and so on. It took 8 years to get to a descent state of life. Currently doing Bee Venom Therapy with good results. I wish you all the best.
Author
Hey Lisa,
Tell me more. Where do you live and who is doing the bee therapy? Or do you do it yourself? I’ve read some about it, but don’t know enough.
Hi- May I ask how you are doing now?
Author
Daniel,
Comparatively speaking, great. I have to think about Lyme all the time but I’ve changed my life to adapt. Just last night I spoke to ANOTHER friend with a new tick bite. Trying to give them what I know and suggest a protocol. Her doctor attempted a horrible, insufficient protocol I’ve never even heard of. Sleep, diet, exercise and supplements are what are working for me but I can see this shortening my life, for sure. Others have no issue and get over it quickly, but those are rare and normally come with a set of specific ingredients.