Thursday, May 31, 2012

Doctor's Visit

Last night I went for an appointment with my Lyme doctor.  I've been having a lot of neurological symptoms lately so I was really looking forward to seeing him.

We reviewed my current symptoms: fatigue, involuntary movements, tingly arms, difficulty walking, slowed speech and cognitive function.  In general I feel like if only I didn't have these few really debilitating symptoms I would be doing really well.  I can feel the old me trying to rise to the surface but it's as if I'm weighted down by these few major issues.  We also reviewed the list of my old symptoms and celebrated having so many of them resolved.

Then we moved on to muscle testing or ART as some people call it.  We tested for my current infections and compared them to my last visits.  He uses a ranking system where 1 is the most active or biggest problem, 3 is present but not incredibly active, 4-5 is detectable but at a verylow  level, and 0 is not present at all.  Here is an over view of my ART results.

Test                    Dec '11      1/12       4/12          5/12

Lyme                   4                 4            2               1           

Babesia               3                 2            2                3

Bartonella           3                 2            2                3  

Parasites             0                 1            5                0

Viruses               4                 3            3                4

Mycoplasma      4                 4            4                4

Yeast/mold/fungi  3              3            4                4

Bacteria             3                 2            3                4                

Neurotoxins       4                4                              4

Metals                4                4

Looking at my results we can see that in general I have really good numbers.  Pretty much everything is at a 4 except for babs and bart which are 3s (present but not reeking havoc).  I have gotten rid of ALL parasites.  I think my effort to avoid sushi has helped with this along with some good supplments.  I'm doing pretty well except for a raging case of Lyme Disease.

What I find really interesting about this method of testing is that it often explains how I'm feeling.  I had said that I felt like if I cold get these last few really awful symptoms to clear I would be feeling great and i think I was right.  Once I get this Lyme under control I should be feeling a lot better because I'm not dealing with as many big infections any more.

The next thing we did was to test all of my current protocol.  We discovered that as usual I'm really sensitive to a lot of things and about half of my treatment was no longer working for me.  Taking so many things that my body was no longer liking  might also have been contributing to me not feeling so well these last 4-6 weeks.

We removed all of the stuff my body didn't want, adjusted the doses on a few items, and then added in just a few new things to treat this raging case of Lyme.  I left with a good understanding of what is happening inside my body and a significantly smaller protocol which made me happy.

One of the best lessons I have learned since doing this muscle testing is that sometimes when I think I'm not getting better, that's not the case.  Instead it sometimes is just a switching of dominance in my my infections.  One month I may feel very neuro, another month short of breath, and another my gut may be hurting.  I've learned to recognize that just means that things are changing.  As I clear out one infection another rises to the top and I attack it.  In general, my results are getting better and I'm on a good path.

I'll be doing another blog post soon with my new protocol, but for now I'll share that he wants me to go back on antibiotics for a little while.  I tested well for Bicillin injections.  He thinks 4-6 weeks at one injection a week should perk me back up.  If it doesn't knock out the entire infection we will rotate to something else because after a while the Lyme bacteria adapt and it looses it's effectiveness.  I'm not looking to the pain that comes along with the injections or the ensuing herx reaction, but I am really excited about feeling a lot better and kicking Lyme in the ass once and for all.

Questions and comments always welcome.

Thursday, May 10, 2012

The Unpredictibility of Chronic Illness

One of the hardest parts about living with a chronic illness like Lyme Disease is the unpredictability of it.  Each day when I wake up I have no idea how I am going to feel and what I will be able to do that day.  I start each day with good intentions of feeling great and a list of things I'd like to do, but things don't always go the way I'd like them to.  Today was one of those days.

Today I woke up feeling pretty good.  I was excited about the beautiful weather and I was able to get a quick start to the day.  I went out for a really nice appointment with my chiropractor and dropped off a prescription at the pharmacy.  One the way home I started feeling withdrawn and tired.  I think I yawned 5 or 6 times on the 10 minute drive home.  I thought maybe I would need to take a nap this afternoon, but by the time I had made it upstairs, gone to the bathroom and walked into the kitchen to try to make lunch I was moving at the speed of a snail.  I found myself standing in the kitchen, slightly hunched over, silently staring at the sandwich fixings my husband had set out.  I wasn't moving or talking and I found myself wondering why he was moving around in the kitchen so fast and how I was going to find the energy to make a sandwich for myself.  

Then I realized it wasn't him who was moving fast, it was me who was moving slow.  Within a matter of minutes I had gone from perky and ready to tackle my to do list to total space cadet and barely able to stand.  My husband noticed and asked how I was doing and I told him I didn't feel quite right and that I didn't think I could make a sandwich because I was going down hill fast.  

As I was saying that my leg and arm contracted and I began to have a series of big involuntary movements that I call twitching.  I guess it's sort of like a tick or a spasm.  It doesn't hurt at all and I'm so thankful for that, but when it happens it sort of feels like my brain partially shuts down.  I get slow both physically and mentally, I become very weak, my speech slows, I have a hard time standing, and I become extremely exhausted.

Lucky, my husband was right there and he knows just what to do to help me get through these random blips.  He put me on his back and gave me a piggy back ride to the bedroom where he set me up with my laptop, water, and made my sandwich for me.  He gave me a few words of encouragement and then let me rest for a while.  

About an hour later I had to get up to go to the little girls room.  I was slow and jerky in my movements, but I made it there.  I tried to go from the bathroom to the kitchen to get some water with lemon to help with detox ( I think these episodes come on most often when I'm toxic and I had just upped my dose of Bab-1 and Bb-1), but I couldn't walk that far.  I took a few steps and tried to talk to my husband, but it was too much for my brain and I had to lay down on the floor to rest.

This video is of my trying to get up off of the floor and walk by myself just a few minutes ago.  You'll see that I need to use a chair to get myself up off of the floor and that the effort of trying to take just a few steps is making things worse and finally I just get so exhausted that I fall back to the floor to rest and continue twitching. Sorry it's sideways, I can't figure out how to rotate a video.  If anyone knows I'd love to learn how.

I wanted to share it with all of you so you could see what this twitching I keep referring to looks like.  I also wanted to share it because May is Lyme Disease Awareness Month and I one of the messages I want people to hear about Lyme is that it is serious, it can effect your life in really big ways if you don't get god treatment right away.  The symptoms are different for everyone and this just happens to be one of mine.  

I'm happy that this is something that only happens occasionally, that it doesn't hurt, that I'm not having seizures or dying, that it is happening less often, with less severity and with shorter duration (it used to last for weeks or months, not just days or a week at a time).  I'm also glad that I'm learning how to deal with it to minimize it as much as possible, and that my husband is here and knows just what I need when this happens (I couldn't get through this without him), but it sure makes life unpredictable.

I'll likely spend the majority of the day resting in bed or on the couch because it gets better when I sit or lay down and worse when I try to get up and move.  I'll have to reevaluate my to do list for today and postpone most of the items until this passes.   The hardest part is that I have no idea how long this will last.  It could be just most of today or I could be like this for a week.

I've come to terms with this limitation as best as I can.  Sometimes I get really disappointed about not being able to be up and doing things, but I try not to linger in that feeling.  Mostly, I just try to avoid situations that seem to trigger it and give in to the resting when my body demands it.  Sometimes though, I wish other people were a little more understanding of how this effects my ability to do things.  It's hard for me to plan things far in advance or commit to things that would demand a lot of time and energy (like getting a job or traveling) because I never know how am I going to feel and what my body is going to let me do at any given moment.

Have any of you experienced something similar to these movements?  What caused them?  What did you do about it?  How did it effect you?  Leave me a comment and tell me your stories, I'd love to hear them.  


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