400 Days of Lyme

Writer

My healing journey in California was life-changing, and judging from the updates I got from friends and family in the Midwest while I was away, leaving was probably one of the best decisions I’ve ever made.  I managed to escape one of the most brutal winters in history (not to rub it in at all), but I honestly don’t think my body could have held out  through such a miserable and seemingly endless series of blizzards and polar vortices (is that a word? because if not, I totally just made it one).  I knew I had to leave.  There was no question.  And I mean with the utmost sincerity, my heart goes out to all of you who had to endure it…

(c) Brian Kammerzelt

(c) Brian Kammerzelt

During my time in California, I was blessed to already have an incredible network of friends who took me under their wings and bent over backwards to help me.  I also met some truly amazing and genuinely good people.  I have nothing but love and gratitude for everyone who has made this journey a little easier for me, and hope to someday be well enough to do the same for others in need.  Even though I am not completely well, I’m still trying to do what I can to help others.  That is my purpose in this life.

Ribbon

I was lucky enough to be referred by a friend to see an Acupuncturist (Adrian) in San Diego.  Adrian happens to have Lyme Disease himself (what are the chances?!), and he said that was the reason he went into Acupuncture; he told me it has been one of the most effective ways he has managed his disease.  Full of excitement and hope, I went to see him, and was literally blown away by how much of a positive impact just one session made.  I was so relaxed that I kept falling asleep on the table, and I have insomnia so badly that I almost always need to drug myself in order to sleep.   I’m incapable of taking naps, but Adrian is like a wizard or something awesome like that.  I’ve gone back for a few treatments, and he has helped me so much- he’s really been working on my kidneys, which have been extremely stressed and have resulted in several other health issues.

Acupuncture

My dear friend/sister/twin from a past life (also a Lymie in San Diego) and I have been hugely supportive of each other through the ups and downs of this illness.  She put me in touch with a phenomenal and truly gifted energy/spiritual healer (Nick), who in just one session was able to help me in so many ways it completely blew my mind.  I’ll write more about that another time…

Basically, the universe somehow brought so many wonderful souls into my life who are full of positive energy, love, and light.  I can’t possibly list them all or thank them for the incredible ways they have changed and helped heal me- mind, body, and soul.  My path in life has been insanely challenging and anything but what I had dreamed or hoped it would be, but somehow, I think the pieces are finally starting to come together.  Somehow, I think this was all meant to be.  I know there is a beautiful life ahead of me, and I’ve really learned to take life as it comes, accept that everything in life is meant to teach me something, and let go of things that are not serving me.  I hope to take what I’ve learned and use it to make myself a better person, while drawing upon the adversity I’ve faced to inspire others and make their lives easier.  I’ve come such a long way since my diagnosis; it is truly nothing short of a miracle.

Love and Light

I remember being bitten by a tick in 2007, and may have been bitten before that, so I’ve obviously had Lyme Disease much longer than 400 days- but I finally got my diagnosis 400 days ago.  At that point, I honestly never would have believed I’d be standing here today and doing as well as I am (or even be alive) after what I’ve endured as a result of this disease.  I’m not cured (because there is no cure for Lyme Disease), and I still have a lot of healing to do, but I do believe remission is possible now!!!

PathElephant

I recently got back to Chicago and was catching up with my roommates.  We were joking about who was winning most at life, and Rachel decided it was her.  We all laughed, and then one of them said that I wasn’t even in contention before (and I’m definitely not winning in comparison to any healthy person), but compared to how I was doing, I’ve made phenomenal progress.  That’s right- I’ve clawed my way back from the depths of this life shattering disease and fought with everything I have, and although I’m not sitting on top of the world just yet, now I can finally dream of more than just making it until tomorrow.

Persevere

Just one year ago, I was ecstatic if I could make it out of bed for an hour or two in an entire day.  I was pretty much confined to my bed and completely dependent on others to take care of me most days.  In desperate search of answers, I spent an incredibly exhausting and demeaning (to put it nicely) week at Mayo Clinic (not to mention the dozens of doctors and specialists I had seen before that), yet no one could help me or find anything wrong.  But I have my Master’s Degree in Psychology- I knew I wasn’t crazy (sure, a potentially lethal bacterial infection in my brain altered my cognitive functioning, but my illness was very real).  Unfortunately, there comes a point when hearing from doctors over and over again that you’re crazy, or attention seeking, or making it all up really breaks your spirit and you start doubt yourself and wonder if somehow they might be right.  If you can’t find the crazy person on the bus, maybe it’s you…right?  

Well, that’s exactly how I was feeling the day I left Mayo.  It’s supposed to be one of the best health care facilities in the world, isn’t it?  They have the best doctors, the best equipment, the best technology… how could they not find ANYTHING wrong with me?  Maybe they didn’t want to…I would later learn of the gross misconduct of doctors completely denying the existence of this disease and refusing to treat patients (especially the doctors who wrote the diagnostic criteria for Lyme Disease for the Infectious Disease Society of America to be very stringent; all of them with a proven financial incentive to keep diagnosis rates low until they can make a drug or vaccine to profit off of) while people continue to suffer horrendously and ultimately die.  Other well-intentioned doctors just aren’t educated about Lyme Disease because the truth is swept under the rug, or they know about it but are afraid to treat it for fear of repercussions.

photo (15)

I really didn’t want to die, but felt like death was imminent, and many times all I wanted was for the suffering to end- not just for me, but for everyone who loved me and had to helplessly see me in that condition and care for me.  I know it wasn’t easy, and I’m sure it still isn’t.  I still struggle with debilitating symptoms, but not nearly to the degree of intensity they once were, and they’ve become less frequent.  Sometimes I still need to cancel plans, or I really pay for overdoing it (and by that I mean trying to be productive for a full day).  My brain functioning is still nowhere near what it used to be…but I’m making progress!

The people who have remained true to me (you know who you are) are my heroes- my angels…the beautiful ones who believed me and held me (when it wasn’t too painful for me to be touched) and told me it was going to be ok, even though they may not have believed it themselves; the ones who helped me through the darkest days of my life; the ones who made me smile when I had every reason in the world to cry.  They didn’t give up on me or run away because they were scared, or because it was too much for them to deal with.  I didn’t have a choice, but they did.

Real friends

I don’t even want to think of where I’d be if I hadn’t taken the Western Blot for Lyme Disease- even though I had to do on my own, without the suggestion or help from any doctors.  You learn very quickly when you aren’t getting anywhere in this broken healthcare (or should I say sickcare?) system that you must become your own advocate.  Although that’s nearly impossible when your body AND mind are shutting down, the alternative was not one I was going to settle for.

Everyone has advice for you when you’re going through tough times and you can take it or leave it, but I’m so thankful I took Marge’s advice and had the proper test done.   I was so desperate for answers and I knew I was very quickly running out of time.   I had to get to the bottom of it- even if doctors were unwilling to help or didn’t know what to do.  Who knows if I’d be here today if I hadn’t listened to her- my liver tumor could have easily ruptured, for example, and that most likely would have been fatal.  

I remember getting the phone call on Valentine’s Day of last year that my results from the Western Blot were back (this was the day after I had gotten back from the first of many lovely weeks at Mayo- detect sarcasm).  I wanted so badly to be told my results over the phone, but part of me didn’t want to know.  I was clinging to the hope that there was actually something wrong with me, and if the results came up with nothing once again, I really might have lost it.

Mixed with all kinds of emotions, I rushed to the office.  As we reviewed my results, I learned that had I tested positive or double positive on almost every band indicating late-stage Lyme infection.  HOW COULD SO MANY DOCTORS MISS THAT?!?!  How could their testing be so appallingly flawed?!  Infuriated, yet overjoyed to finally have an answer, I remember sobbing.  As messed up as it may sound to anyone who hasn’t had to deal with the frustrations of a chronic unidentifiable or ‘mysterious’ illness (or constantly being poked, prodded, interrogated, and ridiculed by doctors and then told you’re crazy, making it up, lazy, etc. my tears were tears of joy.  At long last, I finally knew for a fact that I wasn’t crazy.  I was very, very sick, and as much as that sucked, the validation those test results gave me was priceless.

Rays

I knew I had a long road ahead of me (although I had absolutely no idea how bad it would get), but at least I finally knew what I was fighting and was determined to do whatever I could to beat it.  I had actually starting taking the Mitosynergy the very second I walked out of the doors of Mayo, not even knowing what was wrong with me.  Western medicine certainly wasn’t doing a damn thing to help me, so it was time explore other avenues and take matters into my own hands.  I was pissed as hell to be leaving this world renowned healthcare facility with more questions than I came with, and having gone through an entire week’s worth of useless, painful, expensive, and completely unnecessary medical testing.  My faith in doctors (not all, but many) and the medical industry as a whole was forever changed.

Anyhow, I popped two of those magical little supplements into my mouth as I walked away from that place, swearing to wean myself off all the pharmaceutical drugs they had been pushing me to take, and as quickly as possible.  I was sooo over it all.  None of those drugs ever did anything helpful for me anyway, and all of them had lists of side effects longer than my list of symptoms.

Protest

A couple of months ago, I felt like I had reached a plateau with my recovery, and was unable to improve beyond a certain point.  Also, for a follow-up CT scan of my liver on New Years Eve, I was given a high dose of steroids before the procedure because I’m allergic to the contrast dye.  From the steroids, I had an extremely frightening adverse reaction.  Dr. Burrascano, a very prestigious LLMD stated, “Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result,”  One dose can kill a Lyme patient…it’s like Kryptonite to us.  I swear that was one of the worst days I’ve ever had.  Not only did all of my Lyme symptoms come back with a vengeance (hallucinations, cardiac symptoms, panic attacks, horrendous pain, inability to communicate, etc.), but on top of that, I also still had an allergic reaction to the contrast dye.  Yet again, doctors had failed me.  I felt like I was going to die, and that fear was crippling. 

Because this ordeal scared me beyond belief, I got in as quickly as I could to see a different LLMD who I have been so very impressed with.  He understands the extreme complexity of treating this disease and co-infections, as well as the multitude of factors to consider and the delicate balance between treating agressively enough, but not too aggressively.  I FINALLY feel confident putting my life in the hands of a doctor.  We’re attacking each piece of this puzzle bit by bit, and although there are setbacks (as is the nature of treating this disease), we’re definitely making progress!!!

Victory

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2 thoughts on “400 Days of Lyme

  1. Angeli,
    I am glad you are looking into treatment that is alternative to Western medicine. I was of the opinion with major back broblems and sinus issues that the medical Dr. could not accomplish any improvement, but found Qi Gong did give me full recovery and I no longer take any medication or have any symtoms or need to see a chiropractor. I believe you sound to be on the right track and are exploring ways to help yourself that will ultimately be the answer to improved health. Thanks for sharin you story.

  2. I had also an allergic reaction to prednisone. I had to be rushed to the ER because I stopped breathing. And the doctors didn’t believe it was prednisone that could do that. They sent over a psychiatrist because I was getting better(by not taking the prednisone).

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