Wednesday, October 31, 2012

4 months into treatment.....

...and it is with great sadness that I report that many of my symptoms are back.  The rain has started again in the Pacific Northwest, and I feel like I'm "flaring" due to the season change.  I don't quite understand why people with Lymes Disease have Flair ups, but I plan on talking to my LLMD about it my next visit.

I feel so discouraged.  I've been fighting this nightmare for months and was feeling so much better until now.

Over the last week, here are all of the symptoms that have reappeared:

Sensitivity to light
Pain behind my eyes (could also be described as a headache I suppose)
inability to exercise
Joint Pain - mainly knees and wrists
Foot Pain
Waking between 2-4am and not able to fall back asleep

I've been searching the internet all night looking for answers.  I feel so desperate for help, but there isn't enough help available for this devastating disease.  I did find a blog that gave me the courage to continue fighting....because believe me, the thought of giving up has crossed my times a million times this week.  

Here is the inspiring blog:

Wednesday, October 10, 2012

Doctors and their SUGGESTED diagnosis...

As the lyme disease was first settling in, I experienced depersonalization and EXTREME fatigue.   I was told I was depressed and that I needed medication.   I have been depressed before and I knew this was something bigger, but trying to convince a doctor that isn't easy.   Out of desperation, I tried the medication and not only did it INCREASE my symptoms it also caused me to feel as though I was going completely insane and I was very close to hallucinating.  I was told I needed to try another medication.  When that medication didn't work, I went to another doctor.  That doctor told me I was bipolar and needed to see a specialist who would teach me how to LIVE with my symptoms.  Insurance didn't cover this specialist and I ended up with MORE doctor bills.  She didn't tell me anything I didn't know already and I ended up more frustrated because the bills were piling up.   At that point I gave up on doctors.  I turned to acupuncturists and for the first time in months, I felt like someone was finally listening to me. Acupuncturists were my first saving grace where I saw glimpses of "normal."  I then sought out counselors - but only those that wouldn't try and throw medication at me, but instead truly listened.  I attended support groups for people with anxiety.

My symptoms started changing.  I had anxiety, panic attacks, sensitivity to smells, sensitivity to light and was now experiencing extreme physical symptoms.  I was lactating (I don't have any children), I had major foot pain at all times of the day (some people with lymes only experience morning foot pain)and I was starting to have circulation issues.  It started off fairly mild but increased quickly.  My hands and feet started turning blue.  I had a hard time standing for long periods, but I also had a hard time sitting for long periods.  I had shooting nerve pain and twitches.  I had pain behind my eyes and started experiencing migraines for the first time in my life.   I had many floaters in my eyes and had a difficult time focusing on anything.  My vision was blurry.  I had attacks where I couldn't breath correctly which was not related to panic, but would put me into a panic attack due to the awful experience of not being able to catch a breath.  This symptom alone brought me to the point of ER visits.  However, I didn't have any faith in the medical system and I went purely to sit in the ER room in case I past out or stopped breathing entirely. 

My next trip to the doctor (the 4th doctor I had seen) - a ND - wanted to do blood work.  I hadn't had my blood drawn since the first few weeks that the lyme was settling in.   My blood work showed that I had high platelets and the ND was pretty concerned.  I had bi-weekly blood draws for over six weeks.  We were waiting to see if my platelet count would drop - it didn't and it still hasn't.  That doctor - along with two others that she consulted, suggested that I get a bone marrow test as this was showing that I might have cancer of some sort.  I was scared to death of having a bone marrow test and wasn't convinced I had cancer.

The doctor I was seeing at that point was doing her apprenticeship and was brand new- but working under many experienced doctors.  She ended up sending me out on referrals because she felt she didn't have the time I required.  In retrospect, it's probably good that she did this.  Otherwise my diagnosis could have drag on for several more months.

Conversations were starting to be had about the possibility of it being MS.  I was so scared, but was pretty much convinced that is what I had.  I was having a difficult time walking more than a block or two due to joint pain and fatigue.  My hands weren't functioning like they should have been.  I was twitching all the time.  It felt like I had pins and needles all over my body.

Before going in for tests, my fiance and I went camping.  He was sound asleep in our tent, while I was wide awake like the many months before, wondering what the hell was wrong with me.   All of a sudden, it was like a light bulb went off in my head.  It was clear as day to me that I had Lymes Disease.  It was the only thing that made sense to me.  I jumped on my iphone and started searching symptoms....I had them all!  So many things said that many people were often mistaken for having MS before being properly diagnosed.  I wish I could say that was the start of my recovery, but I had months to go before getting a proper diagnosis. 

CDC and their inaccurate numbers

About six weeks after my official diagnosis, I received a call from a nurse.  I can't remember exactly where she was calling from, but I'm pretty certain she was from the state health department.   She called to interview me about my case.

She had many questions.  We covered all my test results and exactly what they meant.  She told me that my case is NOT reportable to the CDC.   She mentioned that the CDC requires specific numbers to line up before they consider a case of Lyme to be reportable.  I was about one number off from what they wanted.

I mentioned that I had found a tick on me, and she then thought it was a possibility that it could be reportable.  She then looked up a few more of CDC standards, and came back telling me once again she couldn't report it.

So, per the CDC, even though I had a tick on me, I had symptoms that followed lyme disease, they still wouldn't accept my case.  Apparently, that isn't enough.

With that said, CDC numbers ARE NOT accurate.   Oregon is infested with Lyme Disease along with many other states that appear to not be affected.  Don't let any doctor tell you differently.

Friday, July 6, 2012

My Experience Herxing

Everyone out there that is suffering with Lyme, is well aware of what a Herx reaction is.  But for those of you that are not aware, I will explain it in very simple terms.

A herx reaction happens as your medication or plan of treatment (i.e. Rife Machine) has killed off more of the disease than your body can handle.  It is a similar reaction as you get when you have a fever.  The fever is your body's way of fighting back and killing off the virus (in most cases.)  What is not the same, is the amount of pain you can endure while herxing.

When I first started my treatment, 4 weeks ago, I was told by two doctors that I needed to be prepared for a herx reaction.  I had myself so psyched up that I was living in a constant state of anxiety - although that wasn't too unusual anyway.  I read so many horror stories on line and watched horror videos on youtube.  While that stuff is very real, everyone will have a different experience.

As I mentioned, I started treatment 4 weeks ago and am currently encountering my first "major' herx.  I believe I had a small herx last week as well, but it only seemed to last a short time.  Granted, I don't have much to compare it to, but I can tell you that it came on slower than I had expected and is giving me different symptoms than I had expected.

I am two years into having lyme and had just started experiencing joint pain.  Previous to that, the majority of my lyme had been major anxiety, strange sensations behind my eyes, migraines with less of the ache and more of the aura, foot pain/itching - which I had originally believed to be gout or athletes foot without the dryness, severe neck and shoulder pain.  As soon as I move on to the next paragraph, I'll think of 50 more symptoms, but these are the major ones I had before my onset of joint pain.

With all that said, I wasn't sure what to expect with the Herx.  What I am experiencing is severe joint pain.  Imagine you have the flu and your body aches and multiply that times 50.  That is about how I'm feeling now.  My tailbone, wrists, thighs, knees, back, hips - everything hurts.  I have a hard time sitting and I have a hard time standing.  It feels like stretching would bring relief, but it doesn't.  I sat in a epsom salt bath to try and pull some of the toxins out of my body and we shall see what happens.

This started about 30 hours ago and I hope it doesn't continue much longer.  What is the positive side?  Everyone says that once your herx lets up, you feel much better.  I am looking forward to the much better part!

Saturday, June 23, 2012

When Caffeine -My Best Friend- Became My Enemy

As I was fighting for my life back, and my energy started improving, I decided I needed to fight to find "me" again. 

I had been a coffee drinker for at least ten years on a regular basis.  I was one of the people who would get a head ache if I didn't have my morning coffee.

Coffee was my way back to normality.  I grabbed a cup one morning thinking that it was my first step back to being "me" again.

Shortly after I drank the coffee, I felt as though someone released little firecrackers in my brain.  I wanted to cup my brain and scream.  In addition,  I was having a hard time breathing.  Caffeine did not agree with my body anymore.

At that time it was easy to blame it on anxiety.  I blamed EVERYTHING on anxiety.  My entire life, I tended to lean more towards the depression end of the scale when I would go through difficult times.  Anxiety was never a big part of my life and I was so confused as to why it decided to show up.

Now it all makes sense.  Lyme.  It's taken a hold of every single function in my body.  I will not be a victim to this devastating disease and I will find my way back to good health. 

Extreme Fatigue

So as if suffering with anxiety wasn't enough......

A few weeks after my initial panic attack, more symptoms started showing up.   I became extremely fatigued.  When I say extremely fatigued, I'm saying I imagine it is close to how one would feel if they were walking through a dessert for 2 days on little water.  I had a hard time walking to my bathroom.  I would sleep 10-12 hours and wake up feeling like I needed more sleep.  Taking a shower became nearly impossible.   I felt as though I was going to faint the entire time.   I wondered what was happening to my body, but I was so exhausted that although death crossed my mind, I didn't care.  If this is how one is prepared for death, it works.   I felt ready to die.  This lasted a couple of weeks before my energy SLOWLY started to creep up to half of that of a healthy individual.  Once I had a little bit of energy back, I felt I could somewhat function.  I would force myself to go for short walks outdoors.  I worked myself up to a point where I could run, but nothing about running felt right.  I forced myself to do so thinking that I could run myself back to better health and more energy.  I changed my diet thinking that would help me feel normal again.  Nothing worked. 

This is one of the million symptoms that lyme can cause.

Up Next: Over Sensitivity to Smells

Weeks after my panic attack I was still suffering the aftermath.  I couldn't drive my car unless it was for a trip to the grocery store - which were very few and far between.   During my 1.5 mile drive to the grocery store, I was in a constant state of panic.....waiting for my heart to start coming through my chest and waiting to feel as though I was being suffocated.   Not only was I in a state of constant panic about having a panic attack, I was now noticing that I had a major over sensitivity to smells.

Any time I would smell exhaust or gas, I would feel like it was going to send me into another deep state of panic.  This lasted over one year.

I realize now, that those smells were much more potent to my nose for whatever reason.  I'm certain that Lyme and I'm sure anxiety disorders on their own heighten many of our senses.  It could be that we are just overly aware of everything around us due to our panic, but I believe it is much deeper than that.  There is something else going on in the brain that I don't think is fully understood in the mental health/medical world.

Three years into lyme, this symptom has diminished.  Smells no longer throw me into a state of panic.  Actually, it's rare that a smell even bothers me anymore.  This is one of the little things that I need to celebrate.  Thank goodness that this symptom is gone!  Now I have to work towards eradicating the plethora of other symptoms that cause major pain and suffering on a daily basis!

The Beginning of Hell in Retrospect

Today I wonder why I didn't call the ambulance.  Panic attacks are no joke and I'm now aware that doctors and ambulance see these several times a day.

Time hasn't changed how scary that experience was and over three years later, it still feels like it happened yesterday.  Although, I can say it took more than six months following that panic attack before I could drive my car without a state of panic, today I can. It's the little things that I see that keep me going!  Progress is happening!  Some day I will be healthy again!

The Beginning of Hell

August 2010

I was driving to a friends house when all of a sudden my heart started racing, I was sweating, I couldn't catch a full breath no matter how hard I tried and I thought death was moments away. I had to swerve over four lanes of traffic to get to the side of the road. pulling over made me feel a little safer, but i swore i was about to die. I contemplated calling an ambulance and learned that calling the ambulance for yourself is harder than it sounds. I'm not sure if it was shame or pure embarrassment, but apparently I was willing to risk my life instead of asking for help.

Cars were zooming past me as I decided that praying would probably be a good idea. I grabbed my water bottle and guzzled the entire thing- I was more than thankful that I had it available. I put my hand to my heart and swore that my chest was going to explode. I again sat and questioned how long it would take the ambulance to get to me and if they'd make it before i died. The thought of death crossed my mind more than a dozen times.

My heart rate slowed from a billion beats a minute to about five hundred thousand beats a minute and I briefly contemplated calling my friend to pick me up. I thought about how she didn't have a car and wondered how she would get to me. My only choice would be to drive to her. I sat for another 20 minutes or so feeling exhausted - I imagine the feeling was similar to what those with epilepsy experience after having a seizure.

I had about 30 miles left to drive to my friends. My house was about 80 miles away, so obviously the logical choice was to continue driving to her house. The entire time my breathing was shallow and the road no longer felt safe. I stayed in the right hand lane fearing that i would need to pull off to safety.

To this day, more than two years later, I still wonder how I made it to her house safely. I had never experienced a panic attack before, but I would never forget this one.

My understanding and compassion for those that suffer from anxiety and panic attacks is the only positive thing that came from that experience. If I would have known that was only the beginning of the hell that I was about to inure, I don't think I would have made it through that experience.

And the nightmare began.........