Living With Lyme, Part 2: A Diagnosis (finally)

And so the story continues.

Some supplemental information about my previous post before I begin this one. I would like to address the comments: First of all, yay comments!! My goal with my first few posts here is to share my story, my struggle with Lyme and hopefully some helpful tips along the way. There will be heavier posts filled with less personal information and more factual information. I will address many aspects of this disease (political, medical, social, etc.), but first it felt very important to me that I connect with you, the readers, on a personal level. This is a struggle-one that we are in together. I am immensely glad that some of you are finding this helpful.

A couple of you asked about my tick. I honestly can’t believe I didn’t go into more detail, I imagine that I meant to. These days when I forget things I blame it on my ‘Lyme brain’…it’s a nice excuse to have in my back pocket when I forget to feed the pets, or lose track of time and don’t have dinner ready.

The tick I was bit by was not fully engorged, however it looked like it had had some solid blood sucking time. It could still wiggle it’s freaky, little legs, and I’m sure that if we had let it crawl away it could have. Fully engorged ticks are usually too full to move once removed. The removal-as I was in a state of hysteria and under the assumption that there was some kind of alien life form on my body-is all a bit of a blur to me now. However, I am in the unbelievably fortunate case to have an Entomologist for a Father. For those of you who don’t know, an Entomologist is a bug scientist. My Dad was able to remove the tick with a pair of tweezers and identify it.

It is imperative that ticks be removed carefully and correctly. Tweezers aren’t the most ideal option unless you know what you’re doing. There are several, funny looking little plastic tools these days one can get to help with easy tick removal. Once removed, ticks should be kept and given to the appropriate people for identification (my Dad’s office at Umaine in Orono does this service). This is a major step in your Lyme journey. Knowing whether or not the tick that bit you was a deer tick is very important information to know. There are several different types of ticks, but at this time it is only known that deer ticks (or blacklegged ticks) carry the bacterium for Lyme. To find out if that particular tick had the bacterium, or not, you will have to send it away to a lab for testing. Regardless, it is still important to first have it identified.

 

Now, onto the continuing story of my Lyme journey. After the initial bite I was put on the obligatory round of antibiotics. Those antibiotics were called Doxycycline. Those of you who have been bit know how horrible these antibiotics can be. Of the nausea, loss of appetite, sensitive skin and many other symptoms that Doxy can give you-my least favorite was how sensitive your skin becomes to sunlight. Sun burns under your fingernails are so not fun. Once the course of antibiotics was over, I was done-the Western Blot was negative. No Lyme for me.
Now here my story becomes obscure. I had forgotten about the Lyme. It was all just a funny, little anecdote in the tragic comedy that my life was shaping out to be. The next year was fraught with a host of complications, that in retrospect were most certainly affected by the lingering Lyme.

I had developed a severe case of TMJ that required surgery in November of 2013. A surgery that was to take a very serious 5 months of recovery, another 4 months of minor recovery and still, to this day, am I yet to be finished full 100% recovery. January 2016 is the end goal of jaw perfection. Now I won’t go into the details of my jaw surgery too deeply (I have a personal tumblr blog where I’ve done that), but there were a lot of symptoms that went on before I found that I would need surgery for a herniated disc in my left jaw joint.

There were severe headaches (to be expected when your jaw joint is bumping up against the base of your skull), body aches, light sensitivity, some minor weight loss, muscle aches, stiff neck, fatigue, mood swings…the list could go on. It is important for me to note that there was a significant amount of life stress going on that I was dealing with at that time as well. My best friend had passed away the previous July (the same one whose birthday was the night I was mysteriously attacked by a fiendish tick). I mention this for two reasons. 1) In retrospect it is very hard to separate the symptoms of grief, jaw pain and what could have been Lyme. I am certain now that it was all happening. The Lyme had fled my mind, and grief and an impending jaw surgery had taken over. But the Lyme was still there, I just didn’t realize it.

The second reason I bring this up is this: mental health is everything. Believe it, or not, there are still doctor’s and people who belittle mental health. They don’t see depression, anxiety, OCD, etc. as legitimate diseases. As someone who has suffered with them for years and years, they are real and they suck. I bring this to your attention because if you are someone suffering from Lyme disease than you are already aware of the fact that the world is pretty much against you. There are a lucky few people who find help and treatment and support quickly. There are people who beat it. But there is more likely people like me who have fought with every fiber of their being to get help, treatment, a diagnosis. Something. To be plagued with a disease that a large portion of medical professionals don’t believe in, one that is surrounded in absurd politics making it impossible for some to get treatment and for some to treat, is a painful thing. It is, in it’s own right, depressing. Mental health is everything.

Post surgery was a rocky time. My weight dropped due to a liquid diet, then a soft foods diet. My immune system plummeted-though to be honest it wasn’t the greatest to begin with. There was a brief amount of time when I was headache free. It seemed that the surgery had worked, and perhaps all my troubles would resolve themselves in time. But then headaches started again-different from the TMJ related ones I was having. I never was able to get my weight back to a regular number that I felt comfortable and happy with. My stamina stayed poor, my fatigue never bounced back like it should have. The body aches hung around long after the surgery was passed. It seemed as though there was a deeper issue at hand and all I had done was weaken myself for an onslaught of worsening symptoms.

All of 2014 was filled with worsening symptoms. I was finally at a healthy enough place to work again. But I had to quit due to severe numbness in my feet and lower legs. The fatigue persisted, the headaches lingered. And then something strange happened. I had a severe anxiety attack in public***. I suppose I would go as far as to say it was a panic attack. Something I had never experienced before. After that I started creating excuses to never have to leave my house. My spine ached, my anxiety grew, my numbness crept to my upper extremities. I felt as if I was falling apart.

Doctors put me on medications, were quick to diagnose me with things I didn’t have. Chronic Fatigue is an absurd term thrown around a lot in an office of someone who doesn’t believe in Lyme. I saw specialist after specialist. I tried types of Western and Eastern medicine that I will never, ever try again. Things that made me worse, frankly. In short, the system was failing me. The Western Blots continued to come back negative-as if that was the ultimate proof that I didn’t have Lyme. I was falling apart at my seams, and people just ran more useless tests. Referred me to more people who didn’t know what to do with me. One thing I can tell you for sure: I don’t have a brain tumor. We cleared that up 12 times over.

I need to tell you all something very important. It is this: you are your own advocate. You cannot give up. If the system is failing you, if your care professional is not on your side-go elsewhere. It is up to you. When you have the disease that nobody believes in, it is your responsibility to get the treatment you deserve. I know that seems a bit backward, but that is the sad way of it. And, unfortunately, it’s not cheap. But there are resources out there that can help. Websites, books, support groups, aid programs. It’s all out there. (I will have a post on exactly what is out there, and where ‘there’ is)

Lyme disease is fickle, folks. I will have a post dealing with how it all works inside your body, which makes it so difficult to treat-but I will say now that like most other sicknesses, it sure does like to feed off of your stress. Once again turmoil hit as a close family member died. Yet my symptoms seemed to be in a blissful low. For a while my symptoms stayed low because I needed them to. There was an estate to deal with. But those things settled, and the symptoms crept back in.

Then the seizures started. That was this past July. There was nothing to do, though. I had yet to find my Lyme specialist. I was in a long waiting line of referrals for other specialists. CTs, MRIs, EEGs, blood tests..everything had been ordered and all of it came back normal. There was nothing for me to do except get worse. So I did. The Lyme in my body took care of that on it’s own. The neurological symptoms piled up. Spine aching nausea, puking, retching, vision disturbances, numbness in my arms and legs, constant headaches, localized body and joint pain causing me to need to walk with a cane, huge drop in my already poor weight, severe fatigue, inability to hold forks, knives, pens in my hands for too long, inability to concentrate, formulate coherent thoughts, sentences, inability to find the word I’m looking for, gut issues, stiff neck, inflammation, pain-crazy pain, and probably more that I’ve forgotten..because, you know, Lyme brain.

Not until September did I get to have my first appointment with my now truly amazing Lyme specialist ND (Naturopathic doctor). He resides in New Hampshire, so it’s quite a drive, but it is worth it. And the diagnosis is: Neuroborreliosis. Which is basically just a fancy way of saying that my Lyme disease is late stage enough that it has progressed to my nervous system and it is very comfortable to stay there. The goal is to not let it take over my brain. Yay!

Now I’ve rambled on too long here.

Next week: Western Blot vs. IGeneX testing, treatment, where I’m at now and how I’m doing.

 

***Amy Tan is a well known author who also suffers from Lyme disease. Until I read her blog and found that she had had an almost identical experience to mine in her earlier stages before diagnosis, I felt crazy and unsure of how my panic attack could ever be related to Lyme. It’s all related, people. Lyme works so mysteriously, but it’s all related. Always.

Hannah Barry

About Hannah Barry

I am a 26-year-old Mainer. I was bit by a tick 4+ years ago and I've been battling Lyme disease and its various coinfections ever since.