Lyme & Company

Thank you:
Alrighty, firstly, holy moly was I blown away and so thankful for the response I received after sharing my first post.  That feeling of genuine understanding and support is absolutely priceless, and I had no idea that I needed it.  I wrote it hugely just to say out loud to myself what I was thinking, because it was therapeutic.  I decided to share it also for my own selfish intent (so that I wouldn't have to repeat that 10 page story 100 times... ;-)) and had no idea how much I needed to.  Thank you from the bottom of my heart for listening and loving, and to many of you for sharing your experiences with me as well.  There were a lot of outcomes that I did not expect, but that I'm thankful for.

I'm blogging now?:
Secondly, just as I questioned my first blogpost, I am questioning this one.  The further down this road we go, the more anyone reading this can potentially disagree with me.  I am letting that go...  There it goes!
I also feel like continuing to blog about it could be misinterpreted as being dramatic and I definitely don't want it to sound like I'm just complaining about it (although I'm very aware that at times I might be).  But then I remembered the other purpose of this blog is to have all the information in one place, so that I can look back and remember this journey and my family and friends can follow along more easily as well.  So, from here on out, this blog is kind of a journal entry for me and an update for anyone who wants to be updated.  That way we can all keep track of and remember what's going on, if we choose to : - ):

Update:  
The last two months have been fairly uneventful.  I took two herbal tinctures to begin treatment for Lyme, then Bartonella (more on this below), and nothing really changed.  My symptoms changed, but they change every few months and the timing of them seemed unrelated to the timing of when I started each tincture.  I was continually going down hill, so my doctor has decided that after 16 years of disease and two months of herbal treatment with no sign of change, it's time to add antibiotic treatment.  She feels that injectable antibiotics may be the most effective, because they can get in to the nervous system more effectively than oral antibiotics can, and although the bacteria are everywhere, they seem to be heavily targeting my nervous system.

I'll be on oral antibiotics as well as the injections, because with Lyme & coinfections, if you use one antibiotic, it often forces the bacteria to change into the Cell Wall Deficient or cyst form, which are much more challenging to treat (as if it's not challenging enough already, geesh).  My doctor said that if someone with Lyme wants antibiotic treatment and demands only one antibiotic, they will refuse to treat the patient, because they know that using only one antibiotic can actually make things worse.

So that's where we stand.  I'll be continuing the herbal tincture and enzymes (which break down the biofilm/protective layer around the bacteria) and will likely begin the antibiotics next week.  It will be a 3-month course, then we will reevaluate and go from there.

1.  Yes, I know what prolonged antibiotic use can do to someone's body.
2.  Yes, I know that I wasn't responding to herbs.
3.  Yes, I know what not treating Lyme can do to my body.

The choices aren't super awesome to begin with.  After 16 years I'd like to kick Lyme's butt, instead of it kicking mine.  I hope this is a good start.  Obviously we will take precautions so that the extended use of antibiotics will be a positive thing and not harmful in itself.

This treatment may cause me to have a Herxheimer (herx) reaction, in which I feel much worse before I feel better.  What happens during a herx is that as the bacteria die, they release toxins which cause you to feel like poo.  I'll be detoxing as much as I can to try to avoid this reaction.  Some people react, some people don't- just like everything else with Lyme, it's unpredictable and everyone responds differently.

Lyme & Company:
Why is this post titled "Lyme and Company?"  Lyme disease is almost never alone (and by that, I mean that the causative bacteria of Lyme Disease, borrelia burgdorferi are almost never alone).  Ticks infected with Lyme are almost always infected with multiple diseases...  Bartonella, Babesiosis, Ehrlichiosis, Anaplasmosis, to name a few.  Many people with Lyme have one, two, or even all of these "coinfections."  We're not quite sure which of these decided to join Lyme at my party, but my doctor suspects that it's Bartonella that is causing most of my neurological symptoms (even though Lyme in itself causes some neurological symptoms... so it's difficult to differentiate).  Hey, thanks for joining, Bartonella.  Did you bring anyone else with you?

We're also not sure what symptoms may be permanent damage and what symptoms are from an active infection.  Time will tell.  How do we know I have an active infection?  My antibody response on the Westernblot test was positive for Lyme, my CD57 marker was 14, my history of clinical symptoms and lab tests, and my present symptoms.

My CD57 result was 14.  Healthy range is between 60-360.  This is a marker of immunity.  While it's not a diagnostic test (we already have that and clinical symptoms), for anyone who's still questioning if something's going on in my body or in my head, this is one more indicator that something is wreaking havoc on my body.  Numbers are only that low when your overall health is very poor- and the only known cause of a low CD57 happens to be Lyme.  Remember, the goal isn't to rid my body of the borrelia bacteria.  The goal is to get the CD57 number up so that my body has the upper hand and can keep Lyme under control without the use of herbs/medications.

Ending thoughts- 'bring it on, Lyme.'