Emergency Room Drama

I had to travel to Denver, Colorado (from Maryland) last week for a work conference. Now, I live below sea level and Denver is a "mile high" so I should have expected some weird effects. But I was there Monday (Memorial Day) through Friday and I felt totally fine.

I got a few minor headaches but I attributed that to being in a hotel conference room all day without windows and sitting for hours on end.

On the last day of the conference, Friday, we had 2 morning sessions which ended at 11:30am local time. I was attending the conference with my boss, Bruce, and a co-worker, Kari. When the last session ended, I stood up from the table, and the entire room started to spin. VERTIGO!

I've had this lovely symptom of Lyme in the past. It usually lasts a few hours, maybe a day at the worst. In the past, when I wake up the next day it's gone. Easy Peasy! I work from home so that makes things a lot easier to deal with.

Not so much when you are leaving a conference, having to get into a car, drive to an airport, stand in line to check-in, stand in line through security, and then sit on a plane for 3 hours to get home.

We had an hour to burn before the first traveler had to be checked into the airport so we decided to grab some lunch on the way to the airport.

We pulled off to a place called "Wahoo's" which serves fish tacos (in Denver? really?). I was not feeling nauseous but was so dizzy/spinny that I just didn't have any interest in eating, nor waiting in line to order. I asked my boss to grab me a water and I went to find some seats.

Sitting in the booth, my vertigo got WAY worse. After a few minutes, the voices of everyone around me became a pounding inaudible sound (whomp! whomp! whomp!). I started to see floaters in my eyesight and my co-workers (sitting directly next to me) appeared to be sitting at the opposite end of the restaurant as if they were at the end of a very long tunnel.

I was sitting at the bench with my feet up, arms wrapped around my legs/knees. I started to feel a tingling sensation in my arms and legs so I went to put my feet down on the floor, only to realize I had zero feeling in my feet. I couldn't feel the floor at all. That's when the panic set in.

My heart started to race, and I started to breathe very rapidly. I was having a panic attack because I was absolutely sure I was having a stroke or a heart attack. Things went downhill from there.

I told my boss to call 9-1-1 which he did. The restaurant Manager came over and spoke to 911 to give them the address and ask my boss to sign a statement (CYA - cover your ass!!!!). The EMTs arrived and my bloodwork was ALL over the map. Low and high levels of everything (potassium, sodium, all the other weird stuff they look for). Long story short, they took me to the nearest Emergency Room.

In the ambulance I got oxygen, an IV bag of fluids, bloodwork, and an EKG. Thankfully the EKG was totally normal (whew!!!!). Too bad I was too incoherent to realize that news.

They gave me a shot of Valium to try and calm my breathing but it took no effect. By the time I got to the hospital, they gave me a much larger dose of Valium and my breathing finally slowed down. The ER Doc explained that the numbness in my extremities was due to the fact that I was breathing so abnormally fast. It actually changes the chemistry in your blood and can cause a laundry list of problems.

I had to tell the ER docs that I am a Lyme patient, and list the drugs I was taking (3 abx's, many supplements, vitamins, etc.). The ER Doc literally said, "Oh, you're from Maryland, right. We don't have Lyme here."

AHHHHHHHHH! I was too out-of-it to debate him on that fact but it really ticked me off (no pun intended). After 6 hours in the ER, I was released. My boss stayed with me and missed his own flight (God bless him). We flew home the next morning but I was still shaky on my feet.

I got home to MD around 4pm, had a quick snack and fell asleep at 5pm on Saturday night. I slept until almost noon on Sunday. When I woke up, the Vertigo was gone and I felt like a million bucks (relatively speaking from the ER visit).

I don't know if this recent ER visit is Lyme-related or maybe a combo effect of Lyme, altitude, lack-of-sleep, bad diet while traveling, etc. But I now know that I need to carry a list of my medication in my wallet in case I end up back in an ER anytime soon.

On the floor of Wahoo's, while we waited for the EMTs to arrive, I was dictating my meds and vitamins and supplements to my co-worker so she could write them down and give them to the EMTs in case I passed out.

This is not a good way to live. And being 1,500 miles from home, with no advocate, things could have gone very bad out there if I had passed out and they didn't know what medications I was currently on.

Lyme, Herxes, and Drug Reactions

You know those medical questionnaires you have to fill out when you see a new Doctor? They always ask if you have any allergies to any medications. I have proudly always answered NO! I've never had a reaction to any medication except for Prednisone (which I now know was probably a reaction because Lyme and Steroids DO NOT MIX).

Anyway, I was on Doxy for about 6 months over the past year (off and on) along with a few other antibiotics mixed in. I had a few herxes but no drug reactions that were more than an annoyance. That has now changed.

My LLMD put me back on antibiotics last month as I recently posted. He switched me from Doxy to its more powerful cousin - Minocycline. Unfortunately, my body didn't handle the more powerful Tetracycline member very well. For the first 2 weeks I was OK. I had a minor herx, and had the dizziness that is typical of Mino. It was annoying but not debilitating and I figured it would subside if I stayed the course.

In Week #3, things went downhill fast. The dizziness got worse. And one night, I broke out in hives. Horrible, itchy, burning hives. I popped a Trazadone and fell asleep, but when I woke up I was short of breath and so dizzy that I could barely walk. I was holding onto counters, walls, furniture, just to make it across the room.

I couldn't take my 3yo to daycare that day, because I was afraid to drive the car. Thank God for television, our DVR, and On Demand. My poor baby had to watch TV most of the day because Mommy couldn't get off the sofa.

I was so nauseous, I couldn't eat all day, which probably didn't help with the symptoms. I drank a ton of water, hoping to flush out the medicine from my body. I went to bed very early that night, praying for a better tomorrow.

The next day arrived with a slight improvement. I was able to move about the house a little easier, but still spent most of the day horizontal on the couch. By that afternoon, I was feeling a lot better and by Day 3, I was back to "normal" (whatever that means when you have Lyme).

I called my LLMD to let him know what had happened. He said because of my bad reaction to Mino, the chances of having a reaction to Doxy are much greater now. These things can pop up at any time, and because Doxy and Mino are both in the Tetracycline family, I probably should stay away from them now.

So he's switching me again. I'll start back on the Zithromax this weekend. Rifampin starts back up on Monday. And then I'll add Bactrim to my regimen next week as well. I haven't taken Bactrim yet so I'm anxious about what to expect there.

More Stuff

I haven't started the new round of meds yet. The pharmacy had to special order one of them and I wanted to get through the weekend before starting anything.

Today, it's almost 70 degrees outside and I'm sitting in my house FREEZING! The heat is still on, but I'm dressed in long sleeve tee, sweater, socks, and have a blanket wrapped around me. I don't think he ran a thyroid panel on my last bloodwork but will ask him to run one next time if he didn't. I'm anxiously awaiting the new bloodwork to come in this week, I know he ran the CD-57 count. I've only had it run once, back in September and I was a low 44 count. Curious to see what the levels are now that it's been 7 months, with several months of treatment during that time.

It's Back!

Went to my LLMD today after a 3-month hiatus. I finished the prescriptions in mid-February and I was feeling really great. But then, slowly but surely, old and new symptoms started to pop up. My biggest issue right now is in my torso. I've had heart palpitations and flutters, chest pain/heaviness, and an intermittent ache in my upper stomach.

My joints have been feeling great, my energy levels are good, so my original Lyme symptoms have subsided. The new symptoms are apparently all co-infection related. The worst ones are linked to Babesia and I am also showing some Bartonella.

So I'm back on the drugs for a while. He's switching me from Doxy to Minocycline. I'm taking Rifampin and Zithromax again. He's also starting me on LDN therapy (Low-Dose Naltrexone). I also have to go back on Diflucan as my candida is out of control again.

So, here I go again. Another 2 months of drugs. So much for feeling better.

The Rainy Day Blues

So today was a gray, rainy, windy day in Maryland. And my body is paying the price. On damp days, my body hurts. I also went shopping with girlfriends yesterday, walking for hours, carrying loads of clothes to the dressing rooms, and eating "bad" things because I was taking a day off.

I woke up today feeling quite horrible. I'm not sure if it's the weather, or the over-doing it yesterday, or maybe a combo. But this is just yet another side-effect of Lyme Disease. You can have a "good" day when you pretend that you don't hurt, and your brain isn't foggy, and you are totally in control of your body. And then you pay for it afterwards. It might last a few hours, or I could be in trouble the next few days. Rainy, damp weather certainly doesn't help. But then again, what does?

Lyme Connections

It's been a while since I've posted here. But I just found some new resources online through Facebook and other outlets which have gotten me in touch with lots of other Lymies. It's powerful to make these connections because it's important to know that we don't suffer alone.

Lyme Disease can be so isolating. Family members and "good" friends who pass our symptoms off as just complaints or drama, can make us feel like we're traveling the streets alone. I've stopped talking about my Lyme to anyone but other fellow Lymies, because they truly are the only ones who understand.

My previous post, from October, made me remember the fire I had in my belly to get out there and get active. With May fast approaching, and the dreaded tick season upon us here in Maryland, I need to educate, advocate, and help others. I haven't gotten many followers here yet, but I am hoping to find some through the new Facebook network and other connections. Sharing information, research, and knowledge is going to be the best way for all of us to find true peace and health. God knows the medical community is not going to help us.

God speed to all you Lymies out there. I hope you find me here and reach out to chat.

Lyme Disease Activism

I need to pay it forward. So my new mission in life is to educate people about Lyme Disease. If I can save one person, it will be worth this silly blog, and the dollars spent to mail out this letter. I recently donated $1,000 to Open Eye Pictures who created the amazing Under Our Skin feature-length film.

As a result of my donation, I received five copies of the DVD. As a way to pay it forward, I plan to share these DVD copies with family and friends for the next year until I give Open Eye another donation, where I feel I can forward more copies of these DVDs. I want to pay my education and enlightenment forward. Thank you to Open Eye Pictures, to the light you shed on Lyme Disease, and so many other plights that our beloved country has to "not" face every day.

My open letter to the recipients of these DVDs...

October 21, 2010

I’m sorry for the generic letter but I have plans to send this DVD to many friends and family members over the next year. And this is the best way to proclaim my message to all of the potential recipients.

You’ve received this DVD because I need you to know that I have been diagnosed with Lyme Disease. My journey to this point has been long, arduous, and just a little bit scary. I have had a laundry list of very random symptoms for many years in my life. Just to name a few, I’ve suffered from:

·         chronic sinus infections

·         insomnia, where I literally do not sleep for several nights in a row before I pass out in the middle of the afternoon from sheer body breakdown

·         early-onset arthritis in my hands, knees, ankles

·         muscle tremors, mostly in my fingers and feet

·         restless leg syndrome

·         carpel tunnel syndrome

·         anxiety attacks

·         heart palpitations

·         debilitating exhaustion, thankfully only short stints of 1-2 days at a time

·         depression

·         extreme mood swings, including very short temper at times

·         two-year-stint of “dandruff” marked by scalp flaking and un-describable itch

·         night sweats that cause me to change my clothes 3 times per night and move to the sofa

·         vertigo and dizziness that make me walk into walls and furniture causing bruises

·         brain fog, where I don’t remember things I remembered just an hour before (“senior moments” at 35-36-37 years old)

·         floaters in eyes and chronic dry eye

As it turns out, all of these symptoms have been due to Lyme Disease.

I’ve been to many Doctors over the years, religiously keeping my annual appointments. I’ve been to several different Specialists, getting prescribed allergy shots, ENT treatments, counseling, and many MANY prescriptions.

I have (or “had” because I stopped taking or refused to take) two cabinets full of prescriptions that were given to me, at a very great financial cost. The funny thing is, I walked out of most Doc offices with wonderful FREE samples in a big fancy plastic bag. How nice of them, right? Not so much, as it turns out some of the free drugs I got have since been pulled from the market…

Moreover, the NEW drugs on the market (aka, those free samples) are extremely expensive. I don’t know about you, buy my deductable is $2,500 per year. That includes me and my Daughter for medical appointments and prescriptions. Unless we have a surgery in any given year, I would think it would take a long time to hit the $2,500 deductable. And it used to. But now, it really doesn’t take long to rack up $2,500 in charges when some of these prescription drugs are $20 or even $60 per PILL! And if you get a 10-day supply, you can understand when we reached our deductable in APRIL of 2010 (with absolutely zero surgeries or hospital stays). One of the prescription ear drops that Isabelle was given by the ENT was $240 for a 3-day supply (and no, I’m not joking).

Anyway, I went to special Doctors to treat my special symptoms, never realizing that each symptom may possibly be something more underlying. I never realized that maybe all of these weird things going on in my body may possibly be…ummmm…connected?

I never realized it, because my Doctors never, ever, once, even suggested it. Even though I told every Doctor all of my symptoms, all of my Medical History. How many hours did I spend filling out those blasted forms in all the new Doc offices, giving my complete history, listing all of my recent complaints, only to realize they would never feed them into any computer, never talk to me about those “other” symptoms, because I was only there to treat my ONE symtpom……(skin, nose, sinuses, heart, mind, spirit, etc.).

A small subset of my prescriptions (all at the same time, each Doc knowing I was on the other “stuff”)  in my house include:

·         3 anti-depressants ( from Primary Care, GYN, OB)

·         2 anti-anxiety pills (from Primary Care, Counselor)

·         beta-blocker (which acts as yet another anti-anxiety drug, from my Primary Care)

·         chemical shampoo (for the dandruff, from my Dermatologist)

·         prescription-strength pain killers (from my Primary Care)

·         prescription-strength anti-inflammatory (from Primary Care)

·         antibiotics (multiple rounds, from Primary Care, ENT)

·         steroids (multiple rounds, from Primary Care, emergency clinic, ENT)

·         nasal spray steroids (from Primary Care, ENT)

·         eye drops (from Eye Doc)

·         anti-fungal (from Primary Care, GYN)

·         hormones (b/c I was peri-menopausal at 35, from my GYN)

Needless to say, I was frustrated, confused as hell, and still feeling pretty sick.

But, therein lies the problem, was I sick? Every Doctor I had visited told me that I was just “too stressed”. They told me that it was “all in my head” and I just needed to exercise more (which I totally admit that I DO need to do). But, it was hard to get motivated to exercise when my joints hurt, my muscles were weak, my mood was crappy, I was Depressed, and I had a beautiful three-year-old baby girl who wanted to play Dollhouse with me. I just didn’t have the energy for all of it.

And poor Ed, we won’t even go into that, but the guy is a-m-a-z-i-n-g for putting up with this %#^%#$#&^ for so long . He’s very supportive, he came with me to one of my first Doc appointments after getting the LD diagnosis, and he understands what I am up against. What he probably doesn’t realize is that a lot of my “issues” (mostly mental) over the years have most likely been from Lyme Disease.

Now, all this stuff outlined here sounds scary, but I am doing very well. Considering what some of my friends (with Lyme Disease) are going through, I am doing very well, and have had pretty minimal side effects (from the treatments).

I am keeping my mind strong, and I am determined to fight this thing with every ounce of my being. But part of fighting this Disease, is making sure that I’m helping others. I need to educate other people, and support families who are suffering. That is why you have received this DVD. You may have received a hand-written note with a specific target to why you received it. Please take the time to watch the DVD. If you feel anyone in your family needs more information on this Disease, invite them over to watch the DVD. Take your time in getting it back to me, but I do need it back eventually, so don’t take forever J.

I have a long list of people that need to receive this same DVD after you, so please make time to watch it with friends and family and mail it back to me in the pre-paid envelope. This DVD will get mailed to another family who I think needs to see its message.

I hope you don’t think I’m preaching to anyone. I just want you to know that I am battling LD, and that I’ve taken on a new mission in my life to help educate the masses in learning about and fighting this Disease. Don’t be surprised if you see me on C-SPAN one day, talking to the Feds about this thing, because I have already been talking to some pretty big activist groups. Even if I get out of this un-scathed, I’m worried about the future, I’m worried about my Daughter, and I’m worried about the United States as a whole. It’s not just Lyme Disease either, there are a ton of bacteria and super-bugs out there just lying and waiting to infect us under our skin.

Thanks for listening to my diatribe. Thanks for watching the DVD. Thanks for sharing the DVD with your family and friends. Watch for updates on Lyme Disease on my blog, if you’re interested. One of my more interesting, entertaining, and disturbing posts is linked below describing my “night music”:

http://thesymptomsofme.blogspot.com/2010/09/night-music.html