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?

Uneducated

Lyme disease is an epidemic.  Let me say that again.  Lyme disease is an epidemic.

It blows my mind that so many people in my life know how much I have suffered with lyme disease, but most people have never taken the time to read about what lyme disease is.  I guess it isn't fair that I expect people to do that, but it sure would be nice.  Not only would it show that they care and support me, but it would also show that they wanted to educate themselves simply so they would be able to better protect themselves from this nightmare of a disease. 

Tonight I was asked about my symptoms.  When I answered, I didn't feel like I was being heard.  I'm sure that most people with lyme have experienced this at least once.  I think I expect people to somehow understand how difficult living with lyme diesease is and how important it is that they learn as much as they can about the disease.

Tonight I mentioned that I am approaching seven months of treatment.  I was looked at as if I should be cured by now.  It's almost as if I could read their mind.  "How can she still be sick after seven months of treatment?"  Well, if they took the time to educate themselves, they could have reacted much different when I mentioned it had been seven months.  

I often post educational pieces on Facebook. I often feel that people are a little annoyed with the posts, or just don't feel it's important.  It's rare I even get a single "like" when I post lyme info on facebook.  However, if I posted something about the flu virus, I'm certain I would get many "likes".

If lyme disease was an STD, I guarantee my friends would take the time to read about it.  Why?  Because they would believe they had a chance of catching it.  Why do people think they are safe from lyme?  I guess the answer is easy. According to the CDC, lyme isn't really an issue. 

Babesia Treatment

My LLMD decided that we need to focus on treating Babesia for the next three months - unless something else decides to act up in the meantime.

My treatment will look like this:

Week 1 (7-10 days)
Artemisinin- 2 pills twice daily
A-BAB 5 drops per day on an empty stomach
Babesia Tincture (LLMD mixed) - 10 drops 3x per day
Lumbrokinase - 2x daily


Week 2 (3 days)
Coartem 2 pills twice daily for 3 days
Lumbrokinase - 2x daily

Then restart Artemisinin protocol

For Herx:
Charcoal 2 pills 2x daily and/or coffee enema (oh the joy of lyme disease!)

Resources

Here are a few resources that I have found helpful.

Here is a link to Inanna house.  I'm under the impression that they will be opening two treatment centers for people with lyme in the near future.  How awesome is that!?  I am definitely excited.  You will also find many helpful resources on their site.

A couple of recommend books:
Cure Unknown
Healing Lyme

Informational sites:

General Lyme Info

Panic and Lyme

ILADS

Late and Chronic Lyme

Babesia

My fight with Babesia

I started the Byron White A-BAB formula in October - it is now February.  My LLMD wasn't kidding when she told me that it is extremely potent. While we didn't necessarily need an additional confirmation of my diagnosis, we got it anyway simply by my dramatic increase in symptoms.  The most prominent symptoms are noted below.

Headaches
Severe upper neck pain
Brain Fog (which I also describe as not feeling "normal".  The "brain fog" term is just what most doctors use since it is difficult to gauge what "normal" means)
Extreme Fatigue
Wrist pain
Anxiety
Depression

From what I have read, the A-BAB formula kicks your own immune system into high gear to work at fighting off the Babesia infection.   Babesia is treated very differently than other lyme and co-infections.

My herx reaction on A-BAB have been a complete increase in all symptoms.  However, I have also noticed that it doesn't seem to lift as quickly as it did while on antibiotics.  Instead, it seems the symptoms just increase and stay that way.  It could also have something to do with the lumbrokinase.  If you want to read more about this, I recommend the article found on this page.

I just started the lumbrokinase last month and have my monthly visit with my LLMD tomorrow.  I am going to be sure to ask her if the increase in symptoms without relief is normal or if we need to back off a bit as we move forward.

If I've learned anything over the past 8 months, it's that lyme treatment is definitely not a fast treatment.  It's a slow, steady yet aggressive treatment.

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
Vertigo
Anxiety
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:
http://www.angelfire.com/me2/StarShar/Herx1.html

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.