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.