Shanghaied by a Tick: Part 2

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Part 1 can be found here...

So why is Lyme so poorly understood by the Center for Disease Control (CDC) and the medical community at large? It really boils down to two things: greed and profound silo-based arrogance.

Some doctors and individuals at the CDC have been paid by insurance companies to deny the obvious, thereby condemning tens of thousands of people to misdiagnosis, financial ruin, abuse and wrecked health. Rather than go into a long rant, I'll explain it this way. The CDC's refusal to acknowledge that chronic Lyme exists is as flagrantly dishonest as Trump's most egregious "fake news" claim.  It doesn't matter what the real experts know, what the data proves or what the masses know, it's fake merely because they say it's fake. To my understanding the CDC is a world-class organization, but when it comes to chronic Lyme someone has their hand in someone else's wallet and they have their collective heads in the wrong place. 

If you'd like to understand more about Lyme and, in particular, the political issues with the CDC and the healthcare community you should watch Under Our Skin which is a great documentary on the subject (full disclosure, my parents helped fund it after my mother's awful experience with Lyme).

The CDC has recently recognized Lyme as one of the fastest growing vector borne diseases and they're investing heavily into prevention. While that's a good thing, they continue to damage the prospects for chronic Lyme patients.

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What is “Chronic Lyme”?

In the majority of cases, it [Lyme] is successfully treated with oral antibiotics. Physicians sometimes describe patients who have non-specific symptoms (like fatigue, pain, and joint and muscle aches) after the treatment of Lyme disease as having post-treatment Lyme disease syndrome (PTLDS) or post Lyme disease syndrome (PLDS).
— CDC FAQ

Wow. Antibiotics, and certainly oral ones, are only proven to be effective if the patient is treated soon after they are infected. Once the bacteria is established antibiotics are next to useless, but prolonged use will certainly destroy your health and finances. Borrelia burgdorferi (Bb) is the most complex bacterium known to science. It has five subspecies with more than 100 strains in the USA and 300 strains worldwide. Bb takes three different forms to evade the immune system and antibiotics; the spiral shape (spirochete) that has a cell wall, the cell-wall-deficient form, and the cyst / bio film form. The purpose of conventional antibiotics is to fight against free-floating bacteria. However, once a pathogen creates a biofilm, they are 1,000-times more resistant to antibiotics. The National Institute of Health states that approximately 80 percent of chronic microbial infections are caused by biofilms. Even if patients see improvement from antibiotic treatment, it is common for them to relapse due to the presence of biofilms which helps to explain why chronic Lyme patients remain ill after extensive antibiotic treatment.

Despite the CDC disseminating misinformation, why do otherwise good doctors miss the mark? Well, the Lyme literate know it as "the great imitator" because it can mimic many other chronic disorders and this just doesn't fit the doctors' view of the world. They simply write off people who advocate chronic Lyme as wackos. They'd be much happier placing patients into well established silos that fit the symptoms; arthritis, clinical depression, auto immune disorder, etc., even when it makes no sense. The CDC's utter bullshit regarding chronic Lyme reinforces this approach.

For example, I worked with one woman in her thirties. A total workaholic who in a matter of weeks had joint pain so bad she couldn't pick up her kids and she often had to take pain killers just to drive home. After six months and multiple doctors she was correctly diagnosed with Lyme. Really? This was recent and those were Boston-based doctors and acute joint pain is probably tied with chronic fatigue as the top Lyme symptom. 

Lyme's impact on the Energizer Bunny

Lyme's impact on the Energizer Bunny

Another friend used to run at least eight miles before breakfast, work a full-time job and before going to bed he'd build things. He built his house, he built a plane (that he flew), and he's built a bunch of cars including seventeen SL-Cs (I'm trying to finish my first). You know, the Energizer Bunny type who makes you question what you've done today.

He got sick and in three weeks he needed to take a nap in the middle of the day and be in bed by 8:30 PM. Other symptoms include: chronic hives all over his body, sore joints, heart beat skipping, muscle pain (like he used to feel the day after running a marathon), facial twitching, ringing in ears, etc. Yeah, he's a train wreck and after spending five years meeting with every sort of specialist they diagnosed him some form of autoimmune disorder. He has a P.H.D. in biology and he read everything about that diagnosis. He kept telling them that that it made no sense and that he thought that he had Lyme. He lives in Connecticut and both his dog and neighbor had Lyme, so his theory doesn't require an advanced degree. They put him in a convenient silo and condemned him there for life. I was recently able to get him in front of the right doctors and they confirmed that he has Lyme in his spinal column and he is currently in phase two of a brutal treatment protocol.

Syphilis spirochetes, they look a lot like Borrelia (aka Lyme) spirochetes

Syphilis spirochetes, they look a lot like Borrelia (aka Lyme) spirochetes

These experiences aren't outliers. Everyone that I've met in the Lyme community has a similar story which ranges from repeated misdiagnosis to outright abuse. Perhaps you're thinking that I'm being too hard on the healthcare system and that they should get a pass because it's the only disease that breaks their vaunted silos. WRONG!

Person with tertiary (gummatous) syphilis. Bust in  Musée de l'Homme , Paris.

Person with tertiary (gummatous) syphilis. Bust in Musée de l'Homme, Paris.

They have failed to understand the obvious, and well documented similarities between Lyme and Syphilis. To my layperson's understanding, the primary difference between Syphilis and Lyme is that the former is a Sexually Transmitted Disease (STD) and the latter is a tick-borne infection. A second and very unfortunate difference is that there are excellent diagnostic tests for Syphilis whereas the ones for Lyme only detect a few of the Lyme variants and even then there are many false negatives. Finally, late stage Syphilis is often more catastrophic than Lyme;  gross disfigurement, insanity, death, etc.

Beyond those differences, they both feature spirochetes, they both have three stages (although the CDC denies that the third stage exists for Lyme) and they are both known as "The Great Imitator" because they can mimic almost any medical condition in the textbooks, including major psychiatric disorders. The imitator has great range, Beethoven went deaf due to syphilis and it killed Bram Stoker, author of Dracula.

In fact medical students in the USA used to be (and perhaps still are) taught that they should always consider neurosyphilis as a potential cause for atypical behavioral and psychiatric symptoms because late neurosyphilis can be difficult to diagnose and typically occurs 4 to 25 years after the initial infection! While you don't hear about syphilis in the west very often, Wikipedia states that in 2015 about 45.4 million people were infected with it and it caused about 107,000 deaths. Other than greed and profound silo-based arrogance, it's inconceivable that the medical community readily accepts chronic Syphilis and it's ability to mimic other diseases, but calls us wackos for insisting that chronic Lyme exists and that it can manifest in a wide variety of illnesses.

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OK, back to my story... I was fortunate to get an appointment at The Dean Center for Tick Borne Illness. They looked at my previous test results and gave me a bunch of neurological tests. The most interesting went something like this: stand, stand on one foot, the other foot... why am I doing this? Then, stand on one foot with your eyes closed... holy shit, if the doctor hadn't been standing next to me I would have hit the floor. Apparently one of the places that Lyme likes to live in the fluid in the ear which is why many patients have tinnitus or balance issues. They took a lot of blood. I think it was 18 vials, but that stuff makes feel nauseous so I wasn't looking and I certainly wasn't counting. They then strongly recommended that I go the St. George Klinik in Germany for two and a half weeks of treatment.

Now some of you highly-educated doctors might think that I met with some wacko alternative medicine person. You types usually want to know the person's credentials so you can summarily dismiss them. Well my doctor is an attending physician at Harvard Medical School and has dedicated her life to study of tick borne illness. That doesn't make her ipso facto correct, but she likely has a higher cred factor on this than you ever will.

Why do I need to go to Germany? Boston is the healthcare capital of the world and I'm sitting with the best doctor in the best facility for Lyme in the city. It's pretty simple, the treatments in USA are not very effective for chronic Lyme. In fact they won't be covered by insurance and they will likely wreck you health. Remember according to the CDC the condition doesn't exist! The treatments in Germany are effective, but they would cause a USA-doctor to lose their license. So off to Germany I went.

Morning infusions

While St. George has a robust three-week protocol, the primary parts are: (1) hypothermia therapy, (2) intravenous ozone therapy, (3) intravenous antibiotics, (4) detox, (5) nutrients and (6) diet. One of the first things they do is install a "port" into your arm which enables them to give you infusions. I have good veins so this wasn't a big deal and mine lasted the whole two weeks. You're pretty much hooked up to these things all day.

Most patients receive two full-body hypothermia treatments. Since you'll be sedated for six hours they give you vegetable broth for dinner and nothing for breakfast. Early the next morning they sedate you and over a two-hour period they raise your entire body to 107.2 °F. They hold you at that temperature for two hours at which point they cool you down over a third two-hour period. I'm no doctor, but a quick Google indicates that you can die at 108 °F which is why all of this is done in an Intensive Care Unit (ICU). They've done it in excess of 15,000 times over the last 20+ years, so they know what they're doing.

Julius Wagner-Jauregg

Julius Wagner-Jauregg

Now you may be thinking, like most USA-based doctors, that this is some treatment invented by Lyme wackos, but there is medical precedence and science behind the treatment. Firstly, everyone should understand that when you get sick your body creates a fever to cook pathogens. Secondly, Julius Wagner-Jauregg took this "fever is good" approach to the next level when he won the Nobel Prize in Physiology or Medicine in 1927 "for his discovery of the therapeutic value of malaria inoculation in the treatment of dementia paralytica." In short, he used the blood from a soldier with malaria to infect three of his neurosyphilis patients with malaria. The good news was that the resulting high fever killed the syphilis bacterium. The bad news was that they now had malaria.

Thirdly, according to the St. George Klinik, in vitro cultivation of Borrelia burgdorferi (B.b.) demonstrates that the spirochete replicates most quickly at 37 °C (98.6 °F) making the human body the perfect incubator. If the temperature is increased to 39°C (102.2 °F) the growth of B.b. is significantly impeded. At 41 °C (105.8 °F) all spirochetes in the culture are killed after 24 hours, whereas at 41.6 °C (106.9 °F) all spirochetes are killed after two hours. They also claim that the intravenous antibiotics are 16 times more effective at that temperature. That's the science behind the hypothermia treatment. Of course all of this makes me think of the time vs. temperature pasteurization tables that I use when cooking Sous Vide.

Unfortunately, they couldn't do the whole body hypothermia on me because of my heart, so they gave me a special local hypothermia on my head. I walked into the allotted room dragging my IV stand. The nurse swapped my clear IV bottle for a new one with nasty looking yellowish liquid...

"What's that for?", I asked.

"To keep your brain from swelling too much."

"Why do I need that?

"We're going to heat your head up."

"How hot?"

"44.5", she replied. I know that 100 is boiling, so that sounded hot, but I don't comprehend Celsius. I looked it up on my iPhone. That's 112.1 degrees Fahrenheit!!!

"Isn't that dangerous?", I asked.

"We know what we're doing."

Where's that calming gel? This has to be easier that getting three shots to the eye, right? There was a machine about as tall as I am with lots of buttons, dials and LED readouts and cables that led to an articulated arm hanging over the table. It looked like something from the set of The Six Million Dollar Man - high tech, but dated (not worn, just not state of the art electronics). As instructed, I took off metal items and I laid down on the table and rolled on my side. The nurse carefully positioned the business end of the arm on the back half of the side of my head such that it covered half of my ear. She then gave me a horn and told me to squeeze it if things got too hot. At first I didn't feel much, but I started to profusely sweat, especially on my head. At some point the skin directly under the contact area with the machine started to burn and then burn really bad.... "HONK!". 

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The nurse came in and said something like "Wow, you're sweating a lot." When I told her that the machine was burning me she removed it and let me feel the part that was in contact with my head. It was cool and felt like a gel pack. She explained that cool water was being pumped through that part and that the burning that I felt was electromagnetic waves interacting with the impurities in my sweat.

Wait a second... I had a flashback to a Christmas morning in the 70's when my dad surprised the family a microwave. It was the first one in the neighborhood and it was so cutting edge that my father actually consulted the manual and the number one takeaway was to not put any metal in it. There was a multi-generational debate with my grandparents weather or not it was safe to stare through the window when it was running... Jimmy you used to look at your toes in the X-Ray machine at the shoe store until they figured out that wasn't a good idea. However, it went without saying you weren't to stick your head in it! 

Stay tuned for Part 3...