Life With Lyme

It took me a while to accept that it was Lyme Disease that wreaked havoc on my body. I just assumed I was a walking lemon with so many various diagnoses that it appeared to be a hobby, along with collecting 'ologists'. I had admittedly blown my health off assuming the small ups and downs were normal, a part of aging; even though I was quite young at the time. I'll never forget my first seizure primarily because I experienced it alone and never told anyone about it until I had my third one.

As a child I spent a lot of time outdoors; camping, fishing, roasting marshmallows outside on a fire. Girlscout trips, rockclimbing at Red River Gorge. Although it's not legal, I don't think, I remember carving my name at the tip of the rock referred to as "Half Moon". I never thought while picking ticks off and promptly setting them on fire that one of them would try to ruin my life. Not once in school did I hear the term "Lyme Disease" or even a mention of ticks. I never heard it from any of my health care providers. I didn't think I'd hear of it after I left the woods and moved to California where woods and rivers were replaced by sands and ocean. But I did.

I was in my late teens when I realized I was behind other kids in my class, I tried to learn and couldn't. Nothing stuck in my head long enough for me to ace a test the next day. I remember around the same time picking up hand tremors and that my balance wasn't exactly normal - as I frequently ran into everything within a foot of me. The aches came soon after, but I thought it was normal so I never mentioned it.

I was around 18 when I had my first seizure and to this day I regret not telling anyone. Maybe they'd have done something, but maybe not. I had another when I was 20, and then another a year or two later. Granted, I had seizures between then but didn't know what they were as I was only familiar (at that time) with one seizure type. The humiliating kind, that always seem to arise when I am in public and wearing something new. :) The temporary paralysis, visual disturbances and electrical-type shocks didn't ever make me think of a seizure. I thought my arm, hand, leg, foot, whatever had just fallen asleep. Or that I pinched a nerve, or something.

In 2000, I got my first breast mass and 2 months later had a lumpectomy. Following that, a rash came up which I assumed was due to surgery. I went to a dermatologist who told me perhaps I got ringworm from the hospital, he prescribed steroid cream that didn't work, and I just waited for it to leave which took around 4 weeks.

The rash seemed to come and go every few months from there-on-out. I figured I had some form of dermatitis and ignored it.

In 2005, I had another seizure and this one scared the crap out of me. Right when I felt it coming I called out for my partner. I don't think I was out long, but I do recall waking up and couldn't hear anything but the loudest ringing in my ears you could possibly imagine. It felt like someone kicked the back of my head. To make matters worse, I lost control of my bladder and also in our relationship failed to mention to him that I had these 'episodes' in my past. He decided to call 911 and they shipped me off, kindly without allowing me to change my pants.

I went to a hospital in Newport Beach where I remained in my urine soaked, and now cold, pants. The doctor on call told me it must have been a vasovagal reaction, although I explained to him I passed out while sitting down and most cases of this don't include losing control of your bodily functioning. I was told to follow-up with my PCP which I did, and she ordered a EEG and gave me a work release.

I remember getting the results and being surprised that I failed! I was baffled, and quite appalled that something was wrong in my brain. I had another, which I failed again. Both showed seizure activity in 4 different spots (neither of them were the same), decreased REM, and something else that basically said that seizures can't be ruled out. I had an EKG which I also failed. Everything I thought was normal wasn't even close to being normal. Suddenly I was made aware of every little flaw my body had, everything came back and it came back with a vengeance. The seizures weren't once a year anymore, they were once a month. The pain started to come daily. My vision started to decrease and I picked up daily headaches and weekly migraines.

I couldn't figure out how it happened but assumed that 'one' seizure in 2005 'broke' me. I recovered fine from the rest! My Epileptologist tried lots of things, but couldn't figure out what made my seizure activity change so frequently (it kind of hopped lobes, for the most part). She watched me during my VEEG and saw the twitches my skin does, and asked how long it's happened. I said it does it a lot and has for years, I assumed they were muscle spasms. She asked about other pain, so I told her I had pain all of the time but it was natural for aging.

She eventually gave up without admitting to it and just went on a tirade of prescribing various pills to destroy my liver. Something told me I didn't have Epilepsy, so I stopped taking the pills. With or without them, nothing changed for the better.

Last year during a trip to Kentucky I ended up with this rash, similar to the ones I had in the past but this one was very distinct and it got HUGE. I went to a doctor and he told me maybe I had ringworm or an allergic reaction to something. He gave me Claritin which i told him I was allergic to, so I didn't fill it and went home asking my mom why I just paid $50 bucks to some back-woods idiot to do nothing. She thought I had a spider bite from a recluse or something which is why I went there in the first place. I googled it and it showed these nasty gangrenous bites and I didn't want to have one of my own.

After a few weeks, I noticed my usual pain was hardcore pain. Pain that made me freak out. My knee, which has always been good for me, swelled up. Everything that hurt previously was a walk in the park to how I felt now. If it had a joint, it hurt. Even my eyeballs hurt. I went to this urgent care and explained my mysterious pain. I also brought my old records as doctors like patients who do that. It was around 4 weeks after the initial rash but I had some 'leftover' and I showed it to her, along with a picture I took on the 3rd week of my rash. She said, "You have Lyme Disease".

I never thought it meant anything, so I said, "Ok" and got my prescription and went on my way. Ironically enough, the prescription made me throw up like a champ. Violent vomiting that left my abs feeling like I did 300 crunches. The point beyond it just being bile, it was air and dry heaves. Now, I didn't quite know much at the time to realize this was probably a "Herx" - so I decided to call her and say I must be allergic. She then referred me to a Rheumatologist who gave me Ultram, agreed on Lyme but said I probably don't need antibiotics and just to try this Arthritis-type medication and I'd be OK. A few weeks later she calls to tell me she just noticed in my chart I had Epilepsy and not to take Ultram as it lowers seizure threshold. I took it as prescribed so needless to say, I'd damn near finished it. She told me, although I expressed I still had a fever every day, pain, swelling, and now a new level of memory loss - that I should be 'cured' now and it's natural for "symptoms to linger".

Before I go on, I will say I consider myself lucky to have gotten a rash - otherwise, I'd have no idea still. Even though doctors mistreat, don't treat and/or undertreat Lyme; it's better to know you have it than not to know.

I went to see an Infectious Disease Specialist after that who told me you can't get Lyme in California (this guy is neat). Everything beyond that sounded like Charlie Browns teacher, so I didn't go back.

Around September of last year, I noticed my right clavicle was protruding in an unnatural way. I thought maybe my partner squished me while we were sleeping, or I just slept funny. I got worried, so I went back to my NP at the urgent care. She felt around and told me (after confirming via Xray) that it was my lymph node that was swollen. Now just so you have a good idea, I will show you how this looked. In the image, it is my right which is your left. Compare the right clavicle to the left, and you can see the severity of the swelling. That is over a 3-day span.

She said perhaps my "Lyme" has moved into my Lymphs, and gave me a shot of Rocephin in my ass, which really hurt, by the way. And told me to go back to the Rheumatologist, who in turn, told me again that I was 'cured'.

Soon after, I started to research on my own. I should also note that I tested positive for Human Parvovirus B19, the reference range is 1.11 for positive, mine was 5.01 - my new doctor, a Lyme Specialist says mines the highest she's seen (sweeeeeeet). I was never tested for co-infections (any other TBD's).

Unfortunately, they overlooked some slightly low levels on a few blood tests. Like my IGA Serum, Globulin and a few other notable things which would indicate something's 'off' in my body.

I found this amazing forum that gave me some excellent information regarding Lyme Disease and thankfully one lady told me tales of her daughter, who also had these various seizures and other issues that sounded just like me. Gracie's Mom, she's called. And I love her! What she said sunk in, scared the piss out of me, and made me try harder. Once I saw what my outcome is, I knew I had to step up because my doctors weren't going to. My nurse did, but there's only so much she could do. All along she said I had Lyme and needed extensive treatment.

Fast Forward

I must have stuck out to this very kind woman, because she was so worried about me she gave me her appointment with a Lyme Specialist (2 hours from me). I was on the waitlist, at a whopping #102 when she did this for me. I'd have had at least 6 months to wait, probably much longer. My new specialist found a few things, one being my Babesia infection that was on my report from the Infectious Disease guy and I guess he overlooked his own report, and also forgot to enforce his 'treatment plan' as he never treated me!!

She says I am too sick right now to start treatment, and I have a very long road ahead of me. She told me she would do her best and that she can fix what's fixable. Sadly, she wants my stupid lymph gland biopsied which I don't want to, because something about it makes me feel uneasy. Like I know theres some bastard thing hiding in it, and I just don't want to know about it right now.

She started me on Artemisinin, which I think should be renamed to something else, like, "holycrapthissucks" or perhaps "Donteatme" or something similar. My pseudo-MIL (Partner's mom) treats a lot of various terminal illnesses, and does so in natural and homeopathic manners - down to feeding them organic foods if they are staying for treatments. She is so anti-cancer she told me my teflon pans caused cancer (which I admittedly kept them, because everything sticks to my other pans). Anyway, I read Artemisinin is used for cancer also so I talked to his mom who of course had some and sent it to me. Thankfully she did, because I like free things.

I had a bad reaction to it, my doctor is oddly excited about it because to Lyme doctors, bad is good. If your medicine makes you want to die, it's a sign it's working. My reaction was so bad she thinks she needs to detox me now, then do art, then do IV antibiotic treatment, and then carry on. She has to treat Babesia first, and then go after the Bartonella, Ehrlichia and lastly Lyme.

I am so fortunate to have my partner who takes care of me, or I'd be homeless and very sick. I feel bad a lot that I can't contribute in the way I wish I could. I know I stress him out and when his mom told him about Lyme and that'd I'd have to be on IV antibiotics he was worried. Medical Mystery, Diagnosis Unknown and Diagnosis X are now starting to have more and more shows about Lyme Disease which I know he saw and seemed very concerned about. This has led me to start not telling him about any increase or change in symptoms. I sit in my bathtub or shower and cry and hope that I have my pain or at least the look of it on my face gone before he's home from work. His job brings so much stress I am afraid to add to it.

On one hand, I feel dishonest but on the other, I just don't want to be a burden. He deserves more happiness than anyone I know. All I want to do is make him happy, not sad or worried. This really is a scary experience and even worse trying to deal with it by myself when I'm alone.

Well, that's a solid 30 minutes of typing!

I should end this here, haha.

Thanks for reading, if you even made it this far.