Night Music

One of the strangest, and frankly the scariest, random symptoms I've experienced over the past year or so is when I hear what I call my "Night Music". It sounds a little less scary when I call it that, and it calmed me down when I thought I was truly losing my mind.

I’ve had really bad insomnia for a while now, several years at least. It comes and goes with severity, usually a week on/week off. I have both kinds of insomnia, the kind where I can’t fall sleep and the other one where I fall asleep at a normal hour (sometimes even early) but then I wake up at 2am and am awake the rest of the night surfing really bad cable shows. The insomnia has gotten so bad at times that I used to record cable movies and talk shows during the day on my DVR so I would have something more interesting to watch at 3am when I was by myself in the loneliness a night full of sleeping neighbors and family members.

Sometimes I would just go sit in my daughter’s room and rock in the rocking chair and listen to her quiet breathing. I would silently pray to God to let me fall asleep, or I’d scream at him silently for the horrors that insomnia brings over time. Why me, God, why? Then I would turn myself around and thank him profusely for the sleeping beauty that was lying peacefully just a few feet in front of me, and realize that lack of sleep was nothing compared to what some people in this world have to endure. I still didn’t fall asleep after these coming-to-Jesus moments, but at least I went back to my solitary sofa with a more peaceful frame of mind.

I think the night music started sometime last year. I was suffering from yet another debilitating sinus infection where I could only breathe air into one side of my nose, my head felt like it was going to explode, my eyeballs felt like they were being pushed out of my skull, and my throat was raw from the gunk slipping down the back. I blamed my chronic sinus problems for my insomnia, as well as other symptoms. Like my “Night Music.”

The Night Music was the one symptom I never brought up to any of the Doctors I’ve seeked out for my varying symptoms. I was so incredibly afraid, terrified, that there was something seriously wrong with me. Brain tumor? Mental Illness? So many other things ran through my mind. I guess I should explain what my Night Music really sounds like.

When I’m lying in bed, trying desperately to clear my brain and meditate and pray to fall asleep, the house is quiet, my husband and daughter are sleeping and we have the whir of an air filter in our room as well as a small fan that my husband has on his side of the bed. So it’s quiet but there’s white noise. And then I hear my music start. It’s a muffled sound, like maybe someone left a radio on in another room down the hall. Or maybe my neighbor two doors down has music playing outside in their yard. Or maybe I’m completely going insane. At least that’s what I was absolutely, positively, desperately afraid of.

Most nights the music sounds like a symphony, or an orchestra. It’s typically classical music sounding. I can’t hear an exact song (i.e., Für Elise). And I can’t hear any words typically (except for the night I heard a Bruce Springsteen concert in the neighbors yard?). But the music is clear as day (or shall I say night?). I can actually hum the tune if I wanted to. If this music doesn’t exist, I thought, am I meant to be a song writer? Is God talking to me right now? Is he giving me some kind of CRAZY sign right now? No. There is just no way. I’m just plain crazy. And so I told nobody. Not my husband. And certainly none of my multiple Doctors.

Another very common music I hear is Carousel music. VERY annoying at 2am. I also get a little woozy since I can’t help but picture my daughter on said Carousel riding a funky outfitted Zebra as he leaps and bounds in a dizzying circle in front of me. I feel like I have to watch it to it’s completion so I can maybe get it out of my head? Kind of like when you get an annoying song stuck in your head and you try to “finish” the lyrics so you can definitively STOP the music?

Except it never works, and so I relegate myself to the couch for some good ole Cable programming. At least the Night Music will stop. Until tomorrow night anyway, when I have to go buy more tickets for the Carousel from Hell.

So now that I’ve been researching and studying Lyme Disease for the past few months, as I talk to my friend whose whole family has been plagued by the diagnosis and treatment cycles, and as I am now diagnosed with LD myself, I can finally talk about my Night Music. Now that I know I am not going to end up in a rubber room with a straight-jacket on, I can almost laugh at this seemingly innocuous symptom. Tinnitis move over, I have Night Music to lull me to sleep. And maybe I’ll just go out and buy one of those little pocket voice recorders and hum the tunes I hear. If I can find a way to translate them to real music, maybe I’ll be a musical virtuoso. Heck, it would help me pay my mounting medical bills.

From Phantom of the Opera’s “Music of the Night”. Music written by the great and almighty Andrew Lloyd Webber, Lyrics by Charles Hart.

Softly, deftly, music shall caress you.

Hear it, feel it, secretly possess you.

Open up your mind, let your fantasies unwind.

In this darkness that you know you cannot fight.

The darkness of the music of the night.

Anemia be damned

Another piece of my bloodwork that was interesting is that my H&H (hematocrit & hemoglobin) are back within normal range but my Iron Serum level was higher than the normal range (depending on who you ask for a normal range).

This lab lists 35-155 ug/dL for the normal range but I've seen online that other labs consider 60-170 being the norm. My Iron Serum came in at 169 which got flagged as high from this Lab where my bloodwork was processed. I'm hoping that is just from the four-month iron supplement I was on for my Anemia.

I'll find out more about that # next Wednesday when I have my follow-up appointment to review my bloodwork and discuss what supplements and medications I need to start for the Lyme.

At least it has a name, at least it has a name...I keep repeating this to myself when I start feeling depressed and overwhelmed by the months and years of recovery I have ahead.

D-Day

I received the results from my blood test in the mail today. I have to call my Doctor in the morning, his office was closed by the time I got around to opening my mail. Turns out I have Lyme Disease. My CD57 count was a low 44. Anything below the normal range of 60-360 is indicative of Lyme. I don't know how many bands I have, I'm hoping to get more info from the Doc tomorrow. He will most likely put me on a few supplements for a week or two before starting the first round of Doxy. I'm hoping I can knock this out quickly but I know from the experience of several friends currently suffering with Chronic Lyme, that it could be a long-term thing, months or even years.

I hope I'm up for the challenge. I'm pretty freaked out right now even if part of me is happy I have a diagnosis. And my new Doctor will treat my whole person, so I'm going to try to stay positive, even though I have a serious and longterm illness that I know will be a long road to tackle.

The Meds

So after seeing the Holistic doctor, here is what I'm taking the first month of treatment. I have a follow-up with the Doctor in 4 weeks to review my bloodwork and assess how I'm feeling:

1. Diflucan - anti-fungal medicine for one month, to be re-evaluated at my next visit. May have to continue. There is a Herxheimer Effect from Candida die-off which produces toxins in your body as the yeast dies. It makes you feel worse, before you feel better. Should be a fun month.

2. Omega-3/Fish Oil - Taking 2 in the morning, 2 in the afternoon.

3. ActivNutrients - A powerful multi-vitamin, 2 in the morning, 2 in the afternoon.

4. Vitamin D - pretty much everyone is VitD deficient these days so he put me on a supplement immediately until we get blood work back.

5. Probiotic Pearls - 1 in the morning, 1 in the afternoon. Basically everyone should be on Probiotics daily. Especially someone like me who has such massive stomach issues on a daily basis. I was "diagnosed" with Irritable Bowel Syndrome in High School and have suffered the consequences for 20 years. I've enjoyed a very normal schedule for the past few weeks since I started popping these little gems. (I started the Probiotics before I had my appointment with the Holistic Doctor.)

6. Trazadone - a happy pill, non-habit-forming, to help me sleep. And boy have I slept well. I fall asleep quickly. I did wake up a few nights, but I feel right back to sleep. It was fantastic. I can't remember the last time I had such a peaceful sleep through the night. This is a drug you have to build up to. You start with 1/2 pill for a week, then 1 nightly for a week, then 1.5, then 2. If I'm not sleeping well still, it can go as high as 4 per night, but I'm already seeing benefits from just 1/2 so I don't think I'll ever get as high as 4. I hate drugs, but I'm enjoying this one so far.

7. Iron Supplement - until I get the blood work back, I still have to continue my Iron Supplement to battle the Anemia. Once I get my Hematocrit and Hemoglobin levels back, I'll know if I can stop the Iron or if I have to continue taking it. The Doc might change my dosage if I'm still deficient.

So that's it for now. I go back to the Doc mid-October to check my bloodwork. I also sent in my hair sample this week. Had to cut large chunks of hair from the back of my head and cut off the last one-inch sample closest to my scalp (new growth) and pile it up on a scale until it tipped. It took a lot of hair to tip that scale. So now I am waiting for those results too. They test for heavy metal toxicity (mercury, lead, arsenic, iron, etc.). I'm almost afraid to hear the results.

Another step we're taking is getting an indoor air quality test and mold check in our house. Again, totally afraid of those results since we know this house had 4 feet of water in it after Hurricane Isabel in 2003. That was before we owned our house but the previous owner told us he did a "total rehab" after the flood. But that doesn't mean there is not still water damage and mold lurking in our walls.

My Symptoms

First, let me document my most annoying symptoms, the ones I've been visiting doctors for, for years...

1. Anemia - This is a new and short-term issue. I had a bad miscarriage in May 2010 and hemorrhaged badly. I called 911, lost consciousness on the way to the Hospital and almost had to get a transfusion. Thankfully that didn't happen but I was left with a very low Hematocrit and Hemoglobin (I think it was 8 and 25?), which left me in the "severe" Anemia range. I was supposed to go on an Iron Supplement (my OB told me any old OTC would do) and I would be fine. I wanted assurance that the Anemia was under control and she told me to go to "any doctor" and ask for a blood test in a few months. (thanks, doc, for thinking of me). 4 months later I still feel like crap, but only my recent blood work will tell if the Anemia is gone and I can stop taking these horrible Iron Supplements.
2. Sinus Infections (chronic) - I've had sinus infections for years and years, they have become a fact of life. Although now I"m reading they don't have to be. I went to an ENT, I started Allergy Shots, they weren't for me. All the allergy meds they put me on made me feel jittery and insane. I hated them all. I got nosebleeds from some. How is this helping??? My allergy shot regimen was 2x/week and it took me almost 2 hours roundtrip to do the shots. I just couldn't keep it up with the demands of my job, when the allergy center was only open 10-4 and closed for lunch. What????  How is that helping people? My Internist willingly wrote me multiple antibiotic 'scrips month after month without ever suggesting I go see a specialist. I had to ask him if he knew of one. Fat lot of good that did me. The ENT actually asked me if I was a regular Cocaine user. Offended, I told him simply, NO! He then (in so many words) told me he didn't believe me because he'd never seen such horrible nasal and sinus cavities other than regular drug users. I explained to him that not only have I NEVER used Cocaine, I've never even SEEN it in real life. I was so pissed, I walked out of his office and I haven't been back.
3. Insomnia - I've never been a good sleeper. I have both kinds of Insomnia. Trouble falling asleep. Trouble staying asleep. Sometimes I fall asleep at 9pm with a book in my lap, but I'm awake at 2am and never fall back to sleep. Other times, I go to bed at my normal time (11pm) and toss and turn until 2am when I finally get up, go to the sofa or guest room and either read or watch TV for the rest of the night. Sometimes I will sleep for 2 or so hours at the end of the morning but most nights like that, I'm just awake the whole night, never sleeping for one...single...minute.
4. Dandruff - My head has been itching for one solid year. Head & Shoulders, Denorex, other random "scalp itch" solutions found in the pharmacy. A talk with my Dermatologist gave me chemical shampoo (I decided not to join that bandwagon). I still itch. I still hope to find out what the hell is going on with my body. I'll never wear black again at this point, I'm paranoid.
5. Joint Pain - As mentioned before, I have to score my child's banana in the morning because I can't peel it by myself. My finger joints are just that stiff and swollen when I wake up. Reminder...I'm only 37 with no history of early onset arthritis. My parents are in their mid-60s with no arthritis to speak of other than normal aches and pains.
6. Vertigo - Ever feel like the world is spinning and you want to get off? That's what Vertigo feels like. Turn your head one way, and the whole room keeps on moving. Lay down in bed and feel like the bed is floating on an angry sea. Get up from a chair too fast and your upper body keeps on moving in that direction and you either fall over or you bump into a wall. I bump into a lot of walls. My family calls me clumsy but I'm actually a pretty coordinated person. Now I absolutely KNOW this is not just silly clumsiness. Something is wrong inside causing this. I always linked it to the sinus infections (fluid in the ears, etc.) but now I think it's much more and linked to some other health issues.

It doesn't seem like a lot, but if you've lived with these things chronically for many years, you would understand the agony. Any chronic illness, whether it's an incurable disease or a relatively minor inconvenience, any chronic illness will wear on a person's soul. It tears you apart emotionally and physically and eventually causes other issues which just exasperate the problem. I'm hoping to help people find true health by following my own journey. I'm not a medical professional by any means. I'm a 9-5 employee for an IT company. I have just been sickly for many years and I have a cabinet full of prescriptions that I'm ready to burn.

Here's to health and happiness!

Sinuses, Insomnia, and Stomach, Oh My!

I've started a new journey. I'm not traveling anywhere. Not starting a new job. I'm not pregnant. I've been happily married for almost 10 years. And I'm not switching religious or political affiliations. I'm searching for health. The kind of health where I wake up feeling, well.....? Healthy! The kind of health where I don't grunt and groan when I get out of bed, where I can peel my daughter's banana in the morning without having to grab a knife to help the job, where I'm not constantly scratching my head (literally) from long-term dandruff and flaky scalp, where I can breeeeeeeeathe free and clear. Health that refreshes me, and invigorates me, and makes me happy that I'm alive today.

For the past few years (I don't really remember when or how it started), I've been seeking out some answer to my aching question...what the hell is wrong with me? My list of symptoms is so long, I didn't even know where to begin. So I started to write them down in a journal. And that journal became a reason to go into a Depression because there was such a long list that started at the top of my head and ended at my pinky toe. So certainly, I must be dying of cancer that had spread throughout my body, or some other crazy Disease that only Doctor House (on FOX) would be able to diagnose.

I made appointments with everyone. My Primary Care Physician, my GYN, my Dermatologist, my Dentist, Eye Doctor, ENT (Ear, Nose, Throat), Allergist, you name it. I was researching sleep studies in my area when my girlfriend called to tell me she had Lyme Disease. Oh bummer, I thought. Then I talked to her more. And the symptoms she was experiencing, very much mimicked the ones I had myself. Her new Doctor was having an info session in our neighborhood in a few weeks, and my friend invited me to join her. I was intrigued. I thought Lyme Disease treatment was just a simple round of antibiotics for the cure. Boy was I wrong!

After the info session, learning about the gross mis-diagnosis of Lyme Disease in our country, and how the Medical community is in the pockets of the Pharmaceutical industry, I was disgusted enough to start investigating on my own. I started a rampant Internet search on various topics involving patient mistrust, malpractice, pharmaceutical research, CDC protocol, diagnostics in the medical community, and much more. I read, researched, read, researched, and read some more. I came to the clear conclusion that our Society is being duped by the "medical" community (and more grossly by the Pharma Industry). Granted, I'm at the very start of my journey, so I may reverse this decision later. I just want to document this very BIG step for me, because I need to be able to read through my milestones as I run through this. What are my symptoms now? What am I taking? What do I feel each week? What does my new Doctor change in my meds? How does that make me feel? I want to document it for me, and for all of you (probably nobody). But at least I have a record and a timestamp for myself.

This is my journey, towards a total body health...