Lyme Disease: Everything You Need to Know

A patient’s perspective. Of course, I have to start by saying, I’m not a medical doctor, or scientist, but like so many Lyme patients around the world (especially in the US), I found that doctors… we’re not a lot of help. Frankly, it was really surprising, and incredibly frustrating. Like so many suffering from Lyme, I had to do so much of my own research: reading books, talking to people, endlessly following online boards, and getting literally dozens of doctors opinions. I saw multiple neurologists, infectious disease doctors, internal medicine doctors, ER doctors, and so many more, all saying very different things, none really offering much help outside of “Get on the Mayo Clinic List,” or passing me off to yet another kind of a doctor I had already been to. I even called doctors all over the world, in Mexico and Germany.

It was a lot of work, and it took a lot of time. It was only a friend of mine who eventually suggested I get tested for Lyme, and shared her experience with a treatment outside of the US, that eventually saved me. So I’m writing this post to save anyone else suffering, or wondering if they might have Lyme, a lot of time and confusion.

These are just my experiences and learnings, and what I wish someone had detailed out for me. This is my story, my experience, and what years of talking to other people with Lyme has made me believe. Purely, imperfectly, that alone.

Lyme Symptoms

Lyme is called “The Great Mimicker” because this bacteria can infect every system of your body, and produce symptoms in the broadest range. It can come and go, and produce a tremendous amount of inflammation in your body that in itself can cause a host of other problems (and has been linked to things like cancer).

For example, if the Lyme affects your nervous system (neurological Lyme) it may present similar to MS, ALS, or Parkinsons. This was the case for me, as I experienced Seizures, paralysis, nerve pain (neuropathy) that felt like being stabbed by a knife, along with burning sensations that truly were unbearable, plus more torture-like experiences, like syncope (passing out) and air hunger (feeling like I could breathe.)

Early Lyme often feels more like flu symptoms, and many people have the bacteria affect their joints and bones most. Many people experience ringing in their ears and/or vision problems. Many experience psychological problems, like suicidal thoughts, difficulty eating, hallucinations, anxiety, depression, and sleep issues like insomnia and/or night terrors.

I’ll include this checklist I was given, but it’s like… a lot. It also can be shockingly similarly to autoimmune diseases, like Lupus. Most people that have been searching for an answer for a while will find this list oddly comforting… I felt like a lunatic telling my husband that “the lights hurt my eyes” until I saw this bit about light sensitivity, and realized I wasn’t crazy, or turning into a vampire.

Understanding the basics of Tick-Borne Illness

Lyme disease is now used as a more general term for Tick-Borne illness, as it’s the most well-known. Lyme disease is a bacterial infection, specifically of Borrelia burgdorferi. However, ticks can carry a range of bacteria, as well as viruses, and often a tick has more than one. My tick was carrying Borrelia (classic Lyme) as well as Rickettsia (or Rocky Mountain Spotted Fever). There is also babesiosis, ehrlichiosis, Powassan, and tons of other nasty “co-infections” you can get, both viral and bacterial. Some strains are more deadly than others, and each works on destroying you in different ways.

There’s a lot of harmful misinformation about tick-borne illness. It’s found in all 50 states in America, not just certain areas, disease can be spread by ticks of all kinds (not just deer ticks, even dog ticks aren’t safe), the size of the tick doesn’t matter (some are as small as the head of a pin!), and the duration of how long it’s attached also doesn’t really matter (the bacteria can travel in immediately.) I recently read that ticks can even pseudo-fly, and I’ve personally seen one fall from a tree above me onto my dinner plate, while eating outside. (Truly a nightmare moment for me.)

There is a tendency to downplay these diseases within the medical community (I suspect, because they don’t have great treatment methods unless it’s caught immediately, which it rarely is). There are all kinds of theories about why the medical community has been the way it has about Lyme. Nonetheless, these can be very serious illnesses. Before antibiotics, 80% of people with Rickettsia died. Powassan can cause encephalitis and meningitis, with approximately 1 out of 10 people with severe disease dying.

A famous doctor who contracted Lyme had to have an emergency heart replacement, and then still died, despite being a doctor himself. Other bacterial diseases (that are not tick-borne) are Syphilis, flesh-eating bacteria, and the plague… so it still boggles my mind why some would try to discredit a bacterial infection’s potential threat. However, it’s getting better, with more and more infectious disease doctors getting more current on these illnesses.

In general though, most bacteria and viruses don’t actually want to kill their host. So the severity of your symptoms can range, including being absolutely unnoticed by you, to making you feel like you’re on your deathbed. My doctors and nurses explained that these are incredibly sophisticated pathogens, that can build a protective barrier for themselves within your body (called biofilms) and hide in your connective tissue.

How much you suffer, depends on the type and your immune system. For example, I got substantially worse, after getting an early round of Covid that knocked out my immune system, and allowed the bacteria to spread. They are currently studying how your immune system plays a role in the severity and longevity of these diseases. Essentially, some people’s immune systems can keep it at bay for a long time, or keep it down with only occasional “flare-ups,” and some people’s (like mine, despite living a very healthly lifestyle in general) loses the fight. I’ll talk a little more about this under the survival guide section, as the best thing you can do until – and in coordination with- treatment, is to keep your immune system up.

Testing & Diagnosis

We just learned that you might have a variety mix of these infections, so understanding which you have is really important. Not all ticks are infected, but many are, and it’s getting worse due to global warming. Testing is difficult. I’ve spoken to dozens and dozens of Lyme patients, from all around the world. Our stories are sadly, all very similar: the diagnosis was long and difficult.

Some doctors are still using the outdated practice of looking for a bullseye rash, which doesn’t always appear. The CDC website (right now) says 70% of people (with Borrelia at least, remember, you might have a different strain) get one, but none of people I’ve spoken with remember seeing one. So please don’t count yourself out (or let a doctor) if you haven’t ever seen a bullseye rash.

In the US, standard tests are only 50% accurate (to learn why, there is an interesting documentary on Amazon Prime called The Quiet Epidemic.) That’s a coin toss, so if it’s negative, that doesn’t mean much. So if your health insurance-covered, traditional test comes back negative, you might still have Lyme. If you suspect you have tick-borne illness based on your symptoms, and no other good explanation, then it is worth paying for a more sensitive test. Here are more reliable places known to have a more sensitive test:

1. Armin Labs- approximately $550 at the time. This lab is in Germany, so it requires you to request a kit from them (email a request to info@arminlabs.com), and then visit an “Any Lab Test” type service to have your blood sample shipped to them). I recommend using Armin Labs, and doing their “tickplex plus” test. The Germans have tick problems, with the black forest there, so they’re more advanced as you’ll continue to hear.
2. Fry Labs- out of Arizona (which a functional doctor provided to me for about $1,200)
3. IGeneX- is another company people have used (but I have not, and thus cannot vouch for them or the cost)

Treatment Options: Why I recommend Whole-Body Hyperthermia in Germany for Chronic Lyme

Let’s assume you’ve figured out that what you’ve been dealing with for days, weeks, months, or commonly, years, is a tick-borne bacterial illness, like Lyme. The first step is to find an infectious disease doctor, show them your positive results, and get on antibiotics ASAP. You want to limit the spread. Timing matters. If they do not want to give you antibiotics- find another one. There is something called a LLMD (Lyme specialist) that you can try to look for here. Often, they don’t take insurance, so this is up to you, just get on antibiotics. (Most Lyme literate doctors will do more than the old 2 week recommendation, but of course, find a doctor your trust and work with them.)

Now, if you’ve tried all the antibiotics, and it’s become chronic, or “late-stage” Lyme, it’s a whole other beast. Some people can keep their immune system up in order to keep it down, and some people are using a drug called Disulfiram (nicknamed DSF in the Lyme community) which acts as a stronger antibiotic to help relieve symptoms more long term.

I did a year of antibiotics including 24 hour IV pumps into a picc line in my arm (a line into your chest), as well as DSF, and while I improved to a big level up, frankly, I just wasn’t getting better. I was struggling to work, walk, and care for my young son to the point of desperation. I got 4 more infectious disease consultations/4th opinions, but they either wanted to sell me a $100K program that most people said didn’t work for them (consisting of daily hyperbaric chambers and other things for months) or I had one infectious disease doctor tell me I just need to give up and accept that too much damage had been done, go on disability (and possibly die, thanks!)

There are so many things out there, but I personally, simply haven’t heard great or long-term success from experimental things like Bee Venom therapy, crazy metal detoxes, or hyperbaric chambers. Certainly, some have had what seem to be temporary results, but it does not kill the bacteria, so I personally think you’re spending a lot of money and time, to have (at best) temporary relief, while the bacteria still waits to come back out later, and do more damage.

A best friend of mine, who also had Lyme (and was the only one to suggest even getting tested when I was in and out of the ER, and neurologist offices non-stop, expensive but zero help) recommended that I go to Klinik St. Georg in Germany for hyperthermia treatment, as she had done. It had cured her, and she connected me with ~10 other people to talk to that it had also healed. What’s key is that it can get their tests to a complete negative (not just a relief of symptoms, with it able to come back again).

This treatment is several weeks to a month long, in a cancer hospital, about an hour south of Munich in a town called Bad Aibling. The way it works is that they heat your body up to 106-107 degrees repeatedly, to mimic a super fever- your body’s natural immune response- as the heat + high-dose antibiotics can kill the bacteria. (SIDE NOTE: Never take anything to stop a fever until it’s 105 or more, or you might be inadvertently letting some kind of infection your body is trying to kill, survive).

Many many other things are done during this time to stimulate your immune system, like Colonics, Electromagnetic wave things, oxygen treatments, Reiki, some kind of shots in the back for nerve pain, that were actually amazing – they will somewhat customize it to your case. My days were filled from morning till afternoon with treatments. A key one was the plasmapheresis, which is essentially taking your blood out and cleaning it afterward. The treatments are not easy, but they’re doable. You may get burns, I lost small patches of hair (that eventually grew back).

It varies in cost, but it is expensive (for me in 2022, with co-infections it was over $40k, not including travel, and time off work). It was also very painful and difficult, emotionally and physically, at least for me, and those I was there with. I’m sure experience varies.

However, it worked. They told me it could take 6 months to a year to see results, and have my body heal, but about a month after I got home, I felt like a new person. Every person I was there with (many from all over the world, including England, Italy, & Slovenia) also got better over the next year, to get their lives back too.

Now, I follow a Facebook group on this treatment, and it’s clear it doesn’t work for everyone. Some people are too damaged, and many simply have other health issues not understood going on. The body, for better or worse, is extremely complex, and we understand so much less about it, than one might think. It’s not a hard stat, but anecdotally, it sounds like about 70%+ of people with Chronic Lyme that other things like antibiotics, couldn’t help, seem to get better through this treatment.

My personal belief, and again, reiterating that I am biased, and not a doctor – I am only trying to help, and share both my experience and observations of others- is that this treatment should be tried if antibiotics aren’t working, as soon as you can. Having an infection causing inflammation and damage to your immune system, nervous system, endocrine system, etc. etc. is only likely to cause more and more severe problems in time. There are doctors with suspicions that end-state diseases, like MS or cancer, could be caused by this constant battle against these tiny buggers burrowing themselves into your organs, and causing widespread inflammation.

If you were my son (and I did unfortuantely pass these in utero to my son) I would have you go sooner, rather than later, if you’ve tried antibiotics, and maybe something like DSF too, and are still suffering greatly. Of course, this is a very hard, personal decision, and not available to everyone financially. Many have done go fund me’s to help with some of the cost, and there are companies who specialize in medical billing (like Medical Billing Guru’s) that can give you a potential chance for your insurance to reimburse some of the German treatment cost (not guaranteed, you have to sort of, get lucky. Oh, the American healthcare system!)

I reiterate: It was painful, very hard, very long, very expensive, and not guaranteed to work. Yet, it is 100% my personal recommendation, and worth it if things are bad. It gave me my life back. And yes, the US doctors offering no hope or real help said it wouldn’t work, despite not looking at all the research around hyperthermia and thousands of successful testimonials.

Lastly, a common question is around immunity- and no, this isn’t permenent protection. From what we know, you can get re-infected again from another tick.

What to bring, if you do go to Germany:

-A comfort human, if you can. You will need the encouragement and outlet. Luckily, you will meet other Lyme patients there from all over, and I highly suggest you buddy up with them and hear their stories. It was cathartic to hear they are all so similar.

-A pillow (for comfort)

-A fan (if going in the summer)

-Entertainment, like movies on an ipad, books on kindle, etc. as there isn’t always reliable internet. There isn’t as much downtime as you might think over 3-4 weeks, among all the daily treatments

–Arm sleeve cover for showing without getting your catheters wet, and/or something like this to cover your port and lines

–Squeeze ball– I found this helpful for when getting the catheters in my arm, which became its own battle.

-Slippers

-Comfy, quick dry clothes that you can easily wash in the sink (+ handwash detergent) there isn’t really a laundromat :/

-They will feed you healthy meals, have coffee, tea, etc.

–Try to go with your veins in as best shape as possible. Try not to get IVs before you go, drink lots of water, etc. The daily catheters in your arms can get torturous for some. Rickettsia especially eats at your veins, so I really struggled with this and getting a port in (they do it there, no need to do anything before you leave).

If you cannot get to Germany, here are the tools and survival tips that actually helped me:

Ice baths: Ice/cold also works on inflammation and healing, but mostly, when you are in an incredible amount of pain, the “pain” of the cold was the only pain reliever that could help me. It hurts when cold enough, and it distracts your brain from your other pain. Then when you get out, at least for me, a wave of pain relief and good feeling comes over your body in relief of the cold ending. There is a great book called “What doesn’t Kill Us” on the benefits and emerging science of cold therapy.

Heat – More obvious comfort, and detoxing through sweat. Better for when you’re not in excruciating pain. Hot baths, Jacuzzi, etc. I loved this little at-home suana.

Cupping – You can buy this fairly inexpensive cupping set on Amazon, and have someone apply them to your back or yourself to other areas to help with muscle pain.

Coffee enema’s – this at home Enema kit is really easy to use. Lyme can cause a host of bad digestive pains and problems, and this can help with those, but it also helps you to detox, which is very important for helping your immune system function better. I know, I was horrified when someone recommended this to me, too, but a quick how-to video on YouTube and this kit, and you can be functioning much, much better.

Exercise– You may not be able to do much. Sometimes I would pass out from walking or trying to ride a bike. So this really just depends on your severity, but if you can lift some weights, it can help with the depression as well as substantially with Fibromyalgia- the muscle pain that is all too common (and so painful) with Lyme.

Supplements – I spent a literal fortune on supplements, but unfortunately, these didn’t noticeably help. Perhaps because my digestive system was such a mess, and I couldn’t really absorb them. As so many Lyme patient’s stomaches are inflamed too, under-the-tongue options and/or IVs are probably best. Anything that boosts your immune system, like D, Zinc, etc. that’s not harmful in general, is probably beneficial, but I do not recommend spending a lot of money on these, again out of anecdotal experience of talking to everyone else, including those of us who all spent $10K+ trying these, hoping for a magic pill.

Breathwork, like boxed breathing – especially in Germany, but whenever in pain. My go to was breath counts of 7 breathing in, holding for 7, and then breathing out for 7. It was a lifesaver to help me get through intense pain, as well as fear around procedures. Give your brain something to do, while also controlling your anxiety through these breathing techniques. Find one that really works best for you.

Medical ketamine– I did this with a functional doctor to help with my fear of dying and PTSD, and I highly recommend it. Please email me if you want more information on this experience. There is a lot of great emerging science on the medical benefits of this treatment, and it is very different than street usage, which of course, I do not recommend!

Dietary changes– these are unlikely to work alone, but again, focus on improving your immune system. Cutting out sugar and processed foods which weaken your immune system, can help a lot. Get as much veggies, fiber, Omega 3s, etc. and limit harmful things, like alcohol. (Tough I know. when you feel beyond terrible, but it will only make you feel worse).

How to support someone with Lyme (perhaps just yourself)

It’s a harsh awakening, to understand how much doctors and scientists don’t actually know and can’t explain. At first, it can be very depressing, this realization that they probably wont save you in your time of crisis, if it’s something complex or lesser known, vs. something more studied, or what I call “bullet and bandaids.” We should never let a doctor tell us to give up, or quite frankly say anything “for sure,” as the truth is, they really don’t know anything for sure (none of us do). They are making the best-informed opinions they can with their (still human) limited knowledge. It’s truly an indescribable suffering, coming at you from so many sides and levels. You might feel like you’re dying, and likely are having emotional pain as well as physical.

Just remember, you know your body. You know what’s “normal” and what’s not. You know when something is wrong. Every single effort you put in to push back the infection is helpful, even if you’re not winning the battle. If chronic, it will probably come and go, giving false hope that’s then crushing when it comes back. Give yourself grace in dealing with the fear. This applies way more than to just Lyme disease obviously, but the reality is we cannot control a lot of what happens in life, only how we respond to it.

There is an art to not giving up on yourself, to keep pulling your head back up when you lose hope, and also to relinquish control of the future. You are not alone, millions are suffering from Lyme worldwide, and millions more suffering from other things. When you do get better, every day you will wake up grateful your body works and doesn’t hurt somewhere horribly. It becomes a gift. Most of us will have to face this ugly side of being human, but you can endure it. Remind yourself, you are a warrior. Humans are warriors who survive and endure. Nothing lasts forever.

I was very lucky to have friends who always believed me, and always let me vent. They were supportive the whole time, but as I’ve talked with so many people over the years, I realize that unfortunately, this is not usually the case. So many people have friends and/or family that don’t believe them, that get sick of them complaining and never getting better, that start to make them feel as though it’s their fault, or something that can easily be fixed through X, Y, or Z…. “Have you tried essential oils??” It can be really frustrating, when you’re doing everything in your power to get better, but you’re just not.

If you don’t have a good support system like I did, I need you to know that, that’s what you deserve, even if you aren’t getting it. Your pain, fear, and distress are valid, and worthy of compassion. If you don’t have a few people you feel comfortable almost endlessly feeling like you can talk to them, then find support groups online- there are tons on Facebook, get a counselor, go to meditations, be in positive environments like gentle yoga, find uplifting talks on YouTube.

As I mentioned, there is a great documentary out called, “The Quiet Epidemic” that you can buy here on Amazon Prime. It’s worth it to understand some of the politics, background, and history of the disease, how serious it can be, and some of the important science behind how the bacteria works. It unfortunately does not cover Hyperthermia in Germany, which I believe to be the closest chance to a real cure.

Lastly, I’ll leave you with a link to my friend Jeff Foster’s poem about Lyme disease, called “Out of hell at last – sometimes all you can do is stay alive.” He was getting treatment in Germany when I was, and he was a kind and amazing soul to be able to talk to during that difficult time. He could make the most depressed and ragged group of us patients, still manage to laugh. Now what I remember more than the pain, was the bonding that happened with all of us, all of us scared and struggling, but no longer alone in the experience. I hope that’s what this post does for you in a smaller way.