Diagnosis: Chronic Lyme Disease

[DeutschBag]

I posted a few years ago about the start of some serious back problems I was having. (thread here) Along with the back, I was having tons of other medical issues at the time and had been given several different and quite serious diagnoses by a multitude of specialists both in Germany and in the US. My family and I moved back to the US last year because the Germans had given up on me. I had been relegated to the status of a chronic pain patient whom they could not help, and would be "living" on Narcotics and PT for the rest of my life.

I visited a couple of pain clinics in Anchorage, AK early in 2013, and just had pills thrown at me. I ended up in the ER because of impacted bowels from all of the pills they had me on, which was actually quite serious. I fired that doc, went to a different back / spine / pain clinic and was given a ton of shit about shopping around for drugs. I had a reference from a well-known person in Anchorage, however, so this doc sat down and listened to my story. I wanted nothing to do with pain pills and wanted to tackle whatever was going on as natural as possible. Three appointments later, this guy said he could do nothing for me. I was going downhill very, very fast.

About three months ago, I noticed rapid deterioration at the roots of all my teeth. I went into the dentist and was told only three things cause that type of decay: meth, diet soda, and gum disease. I told him I used to chew tobacco and he said that my teeth, despite that bad habit, were really nice with little decay - except all the root rot that was starting to show from under the receding gums (no gum disease, though). He said it had to be diet soda, which I haven't had a sip of in over four years. I was looking at a bill of tens of thousands of dollars. Our insurance covers 500 bucks/year. It's the "good" plan, too…...

So, I did some research. As I read and read and read, everything fell into place. I made an appointment with a local clinic and told them I wanted an ELISA and Western Blot blood test done. I could barely walk or talk (wife drove me) when I went in and even suffered a mild seizure while in the clinic. They thought I was crazy thinking it was Lyme. Said I was way too sick for it to be Lyme, then they admitted they knew nothing about it. Five days later, the sheepishly called me and told me both tests came back highly positive.

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Since the diagnosis, I've been trying to put the pieces of the puzzle together. For as long as I can remember, I have suffered from maladies that doctors could not diagnose or explain. I can not remember one day of my life waking up and thinking, "you know, I feel good today!". Not one. But, that was normality to me. I don't know any better. It's all relative, good and bad, right?

I have to start wrapping this up, as I'm losing my ability to use my arms and my head is fogging up. Almost like a slow stroke on the whole left side of my body…..

I had a dream about two weeks ago. I was 10 years old, it was the end of summer just before school was to begin. I had on these super ugly bermuda shorts that were in style that year ('85). They were those stupid knee-length loud colored shorts, you know, the perfect shorts where ticks could hide up one of the legs and not be detected for a while. Anyway, in the dream, I was sitting on our living room floor, lifted up the left short leg a bit, and saw big, red, bullseye rash on my inner thigh.

I wake up with the realization that this was a distinct recovered memory. This was the feeling I had before I did any analyzing of what happened. I called my dad the next day and asked him about any rash I might have had when I was that age in that house and if he was on the floor looking at it with me. He stopped me as I was describing the scene and said, "yeah, we put some cream on it and it went away a week later".

I then called my mom (they've been divorced for 25 years). Same story. They both remembered the scene as I described it perfectly. Both remembered the rash. At the time, the diagnosis was Ringworm. It was 1985 and Oregon, so hard to blame the docs back then I guess….. Easy to blame all the docs since that missed this, though, especially when so many told you everything was in your head and that you were just depressed. Fuck them.

I've been sick for 30 years. Thirty fucking years. The fatigue and flu-like symptoms started when I was 10, the arthritis at age 11. My junior high and high school years, where I always played three sports, were spent mainly in the trainer's room getting taped or ice or heat. The Lyme, and all the related co-infections I have, have invaded every single part of my body now. The physical decay from Lyme (basically, very rapid aging) was bad. The neurological symptoms of Lyme that have exponentially become worse over the past few years? Horrible.

Nearly every person I've told that I have Lyme has the same response: "It's gotta feel good to have an answer finally! So, how long until you'll be better? Just a few weeks of antibiotics, right?"

I can't blame the ignorance. I knew just as little a few short months ago. Thing is, I will never get entirely better. Way too much physical damage has been done, and for someone that has gone undiagnosed as long as me, getting rid of the bacteria will be nearly impossible. My main goal right now is just recovering a little lost energy. 85% of my time over the past few months has been spent on my back in bed. Today is the first day I've been up and able to type in weeks. Good start to 2014, perhaps

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Sorry to slap this up here on New Years Day. Honestly, I haven't given a shit about a birthday or a holiday in over a decade. It happens to those of us with Lyme. I just want to bring some awareness to this issue. I can't believe that there haven't been any discussion on Lyme on this forum, especially with all the time you people spend outside! Research is starting to find that many ailments and conditions may in fact be caused by invasive bacteria like Lyme. Stuff like Fibro, MS, ALS, CFS, etc…. Sure turned out to be the case for me.

Here is a good site to look at for Lyme. Lots of controversy (of course - lucky me) surrounding this whole disease, too. Ughhh, I just want to ski again…. I have been working on that in my dreams, though. Perhaps it's why I had the dream I had. Hey, I like to travel. I can't do that physically any longer, so… I'll post more on that someday when I have more energy.

Here's that Lyme Site: http://www.ilads.org

PS - if any of you ever get up to Hatcher Pass in Alaska to ski or go sledding, give me a holler. I CAN see it from my front porch!

[HansJob]

Lyme' s is so insidious. Can't understand why it isn't tested for more frequently with it being so common. Glad your feeling better now. I'm moving to TKA soon. I'll give ya a holla. Stay strong.

[Gripen]

I'm sorry to hear about this man. Serious vibes, just keep thinking positive. It helps more then anything.

I have a friend who has been shedding light on Lyme disease and skiing for the past few years. She has been fighting it for years and is crushing it in the freeski world at the moment.

Here is her website, maybe there is some info on there that can help.

http://angelivanlaanen.com/angeli-va...-with-lyme.php

All the best!

[bl2000]

Untreated chronic Lyme is either a death sentence or a life sentence. I have a lot of sympathy for what you're going through. Maybe my experience can help you.

I had chronic Lyme from a bite in the 70s (I remembered the bulls-eye rash on my leg that a doctor mis-diagnosed as a spider bite) that wasn't diagnosed until the 90s. By that time, I had had several arthritis diagnoses. Job and life stress triggered an increase in its intensity in 1991 and I got to the point where I couldn't think on my feet, couldn't sleep at night or stay awake during the day and developed sensitivities to dairy and wheat. I was a mess. There were 3 or 4 times I felt like I was dying right then and there, and each time I was just fine with it if that would stop the pain.

Long story short is that I went on IV antibiotics for 8 months and then another 3 or 4 months using stents in my arm and self-administration of the doses once or twice a day. About 10 weeks into the first course, I was on a business trip and while I was walking into a hotel I had a sense that a veil dropped and I felt a bit better. That same feeling of veils dropping in front of me so that I had increased clarity and lessened pain happened over and over during the treatments, each time leaving me feeling a little more alive. The 2nd course was provided as a bit of insurance, since you can never fully knock out the spirochetes as they lodge in areas like your spinal fluid. After that, I had 4 injections in the glutes of mega-doses of an antibiotic and after one of those felt another veil lift after 20 minutes. All very weird.

20 years later I still have very mild but persistent symptoms (joint pain, memory fog, sleeping problems) I attribute to the Lyme rightly or wrongly.

If you want to talk, PM me with your phone #.

[LightRanger]

Rough man. Guy I knew in high school contracted it at basic in...Georgia, I think? Went undiagnosed for a long time.

I have another friend from college who got it somewhere here in CA. She's doing pretty well, as far as I know.

Best of luck man. I've gotten a couple bites before, but thankfully no rash or symptoms. I've read up more on the subject in the last year or so and it's crazy how baffled the medical community still is about lyme.

[DeutschBag]

@HansJob - We'll nearly be neighbors - in AK parlance, at least If we're able to in the future, we'll be looking for land up that way to do some modern homesteading on. Drop me a line when you get settled. When I am able to, which is only once every three months or so, we do head up that way to get breakfast of biscuits and gravy, our rare Paleo cheat meal, at this place:



My symptoms are cyclic, and I think we have them mapped out on a six week cycle. So, in a few days, the absolutely debilitating migraines will be here. I can already feel the encephalitis ramping up. Thanks for the reply. It's appreciated.
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@Gripen - I came across Angeli's story a couple of weeks ago and watched the movie on Vimeo. It made me both laugh and cry, and brought up feelings I haven't experienced in a long time. I was bedridden and in a lot of pain when I watched it, and probably a bit delirious also. After the movie finished, I was left with a feeling of great longing, remembering just how many friends and acquaintances had discarded me over the years. Most of my life has been spent fighting an uphill battle. I have forced myself to do things that have caused me great damage because of pride and ego to please others and to simply be accepted. It seemed no matter what I did, it was never enough for those I surrounded myself with, however. After years of this, and this was only in my late teens, I became quite jaded and started doing a lot of stuff on my own. I couldn't make plans with others because of all the pain I was in (that I tried my best to hide), never knowing when I could physically do anything.

There's that scene in the movie where someone is talking about Angeli and how on some days she'd be totally ripping it, and on others, it was like she had forgotten how to ski. It sounds silly, but I broke down at that part. My entire life is that scene, and finally, FINALLY, I knew there was another person who understood.

Shit, I feel like I'm in therapy. You know, I only went to a couple of therapy sessions, and almost every time, I had the therapists cracking up. They all said my view on the world, although very novel, was very healthy, especially considering what I was going through. I've had to maintain some semblance of positivity to make it this far! And, meditation has really been helping this last year. Wow. Wish I'd grasped that sooner.

Thank you for the response. For those interested, here is the link to the full movie, LymeLight.

@bl2000 - The more I read about Chronic Lyme, the more it freaks me out. But, at least I know what I'm up against now. Our stories sound quite similar, and it gives me hope to know that your treatment has helped you. I was given the standard CDC 4 week course of Doxy when my test results came back. That shit about killed me. I know exactly what you mean about not caring if you just died right then and there. I get that way with my migraines, too. About two weeks into the doxy, I saw an alternative Paleo MD/LLMD in the area who came highly recommended. He said my body was simply too broken down for the heavy antibiotics right now (I had one of the lowest testosterone levels he had ever seen), so I've been doing the Deseret Bio Homeopathic treatment for the first two months along with Testosterone injections to get started (and heavy detox and supplementation). We're re-assessing tomorrow when my test results from Tuesday come back. Luckily, I have the diet and detox stuff already dialed in (thank you, Mr. J. Stanton) and have for a few years. Going Paleo a few years ago likely saved my life. I changed when I had my complete physical breakdown and was wheeled in for emergency back surgery.

I know this veil. I first encountered that feeling when 'brain fog' became a regular symptom years ago. It was like the fog rolling in and out on the Oregon Coast. I also felt a heavy veil lift after my first six weeks of Paleo. I was like a new person. Except I still hurt like hell every single waking second of the day and could barely walk. But, losing the extra weight and getting rid of all that shitty food really cleared my head up and helped my body fight better. Where I really experience this veil, however, is when I meditate (which I must do flat on my back). I can lie down, not be able to get comfortable, struggling to lie still, but then, and I'm getting better at this, something "snaps" and the pain lessens. If I can maintain focus, successive "snaps" occur, and eventually I can't feel my body. Better than any narcotic I've used for pain - if I do it right. It's not easy when pain is so ever-present!

I may take you up on that chat. Thank you for offering that. Damn, I am typing way too much again and now head is starting to spin….. Need to get some damn sleep…

@ LightRanger - Thanks, man. I appreciate it. Yeah, it's like winning the anti-lottery, where you lose when you get the winning tick. I always knew my brillo pad-like leg hair would be the death of me some day…..

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I think I write so much simply because I don't know how long I'll be able to write for. Sorry for the lengthy posts.

oh yeah - insomnia is good for a couple of things. Aurora viewing is one of them. This was from my backyard at 3am about six weeks ago:

[My Pet Powder Goat]

As someone who followed your post over the years -We've commiserated over our shared back issues- and reading about your fight against what you thought was Fybromyalga, I just want to say that it's great to hear that you finally have been able to properly diagnose your aliment. Even if it will be a long road to recovery, it must be relief to know what your up against.

May 2014 be the year you FINALLY regain your health and strength!