3 months into Babesia treatment

When I started treating Babesia, I thought I was seeing a great deal of improvment.  However, I did notice some intrusive thoughts starting around the same time as treatment.  I ignored them thinking they would get better or go away.  Ignoring them clearly isn't the way to go because the thoughts have continued to grow and are becoming very difficult to ignore.

I consider myself to be lyme literate.  I wouldn't say I'm an expert by any means.  I do notice when my symptoms flare, I question every single thing that could be causing these issues similar to what my doctor does.   I'm currently experiencing intrusive thoughts accompanied by anxiety, vision issues and head pressure.  All are pretty typical symptoms, but the fact that they are getting worse as I go through treatment is concerning.  Becasue of that, I have been running down the list of possibililtes.

Herxing?  If it was herxing, it should be letting up by now, not getting worse
Candidia from my recent antibiotics?
Lyme/Coinfections emerging full force again?

Whatever it is, it's miserable and very discouraging.   I stopped taking my drugs about 4 days ago simply because I was convinced it just might be the drugs making everything worse.  I also thought if I am herxing, I need to give my body some time to rid itself of the toxins.  Time for my second trip to the doctor this month.  Hopefully she will have some ideas as to what is going on.  


Update:  April 21st, 2013

My doctor and I still aren't sure what was causing such horrible symptoms, but I detoxed heavily for 3 weeks and the symptoms did back off some.  I'm still concerned that after 3.5 months of treatment, I'm having more bad days than good.  I'm not really seeing much improvement.   Maybe it's time to think about changing my treatment?

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. 

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.