Lyme Log: Chickens and Eggs

I'm long overdue for a medical update.  I always put off writing them because it's so much more fun to write about other topics! But I also know that many of you have been asking me questions and I've been telling you I'll blog about it with the details.  A lot has been going on in the past few months.  I'll try to tell it in parts!

When I snapped these photos of bird tracks today, I didn't plan on writing a blog post titled chicken and eggs tonight. Although, I do hope this was not a chicken crossing our front porch...

Medically, I never feel 'sure' of my decisions--I never know if I'm doing the 'right' thing, if what I'm doing is working, if what I'm doing is 'enough', or in truth, if what I'm doing to fight the Lyme is going to be worth it in the end. 

Taking a break from the Bicillin injection last week was one of the best decisions I made because it gave me a chance to 1. see the progress that I have made, 2. have some time to enjoy Britt, Carrie and David, and 3. clear my head enough to feel like I can forge ahead with the Lyme treatment.

Before Carrie came to visit, I emailed her about the visit. I was trying not to seem stressed, but she saw right through my email and noted how stressed I sounded. I realized how much it was NOT about her visit, but about feeling completely and totally overwhelmed medically. A lot of tears have been shed the past couple of months while I tried to figure some things out. 

At this moment, I can say that I feel a little more clear-headed and can hopefully blog now about what has been going on and the decisions we have been making. 

When we added Diabetes Insipidus into the mix of things I began to feel even more overwhelmed because I wasn't sure where to be putting my energy. Tackle the major ANS issues I have been having? Tackle the Diabetes Insipidus so that perhaps I wouldn't be up all night peeing and would get some sleep? Tackle the increasing depression and anxiety that seemed to be a result of the persistent physical issues?  Tackle the Lyme harder and put the other things on hold? I felt that the combination of the four things put together was about to put me over my tolerance threshold! I was also caught in a vicious cycle of feeling crappy, but not knowing what to do about it, so in turn I did nothing for awhile. I became so paralyzed that I didn't even know which doctor to turn to first.

I felt, and still often feel, like I'm spinning in circles, like it's one step forward and two steps back, and like it's all just a wild goose chase. With these illnesses there really is not a right or wrong answer, a known quantity, and standard treatment protocol, or even research to give us a clue about what to do.

One night I almost didn't answer the phone because I was feeling too sad and tired, but I did. It was Loralea. I started to cry on the phone.  I said that I just didn't know where to go and what the right thing to do was. I didn't have a way to know if I was on the right track or not. Am I putting myself through this horrific treatment for Lyme disease, making myself sicker in hopes of getting better, in vain? What can I hope for and how long will this go on? Because there are no answers I have to run on faith and hope. And sometimes I run low on those.

Jeannine compares my journey to a marathon without an end in sight. Loralea said that the entire ten years I have been sick I have not been able to receive treatment and then focus on healing--I've always been in flux about what we are dealing with medically. Her analogy was that I am fighting on several fronts, several wars (four to be specific: DI, Lyme, ANS, Depression/Anxiety) and it is difficult to know where or how to use my energy.

So what has left me feeling calmer? Mostly some very good medical care. And some very healing medicine in the form of a little being named David, along with Britt and Carrie.

Late in the fall I began having increasing difficulties with my ANS, especially with falling blood pressure at night. This left me stalled in terms of increasing the Lyme meds because they tend to worsen all of my ANS symptoms.  I became fearful that I wasn't 'keeping up' with the Lyme disease and it was getting worse.  I also became increasingly depressed and anxious from all of this (along with other grief I've been feeling). Then I added in the appointment with the endocrinologist to rule Diabetes Insipidus in or out. 

Which were the chickens and which were the eggs? And which should we treat first?

The major questions at issue became:

Are my Autonomic symptoms worse because we are not treating the Lyme aggressively enough? 

OR

Are my Autonomic symptoms worse because because the Lyme treatment IS working?

In the former case we would need to focus on trying to find a way, despite my low blood pressure and other symptoms, to increase the antibiotic therapy for Lyme disease. We would assume that the Lyme, which has attacked my ANS, was getting worse.

In the latter case, we would assume that the Lyme treatment IS working, but it is stirring up worse Autonomic symptoms because this is my 'weak spot'.  As the spirochetes die off, break into pieces, and release toxins, they are likely to worsen the symptoms I am most prone to. See more in my blog on the Herxheimer reaction: (http://adancinglight.blogspot.com/2008/04/lyme-log-what-is-this-herx-thing.html). 

In the end after much back and forth with Dr. ANS, we decided that most likely the Lyme treatment is working and as a result stirring up more ANS symptoms.

As a result we have spent the past two months focusing on finding medication to support my ANS.  We have now found something that works quite well. 

Now the plan is to increase my Lyme medications.  As I increase them, I will continue to dialogue with Dr. ANS so that we can do all that is possible to support my ANS and help me to tolerate the Lyme treatment. The faster I can go with treatment, the sooner and better my hopes are for improvement.  

After finally getting the ANS meds tweaked, I spoke with Dr. Lyme this past week. I now have a plan for increasing my Lyme meds and have started doing so. 

Once we stabilized my ANS more, I started to feel a bit calmer and less scared that the Lyme treatment was not going to work. In turn my mood improved some. As for the peeing stuff, that's still in flux.

I am guessing your head must be spinning by now from reading this medical update! I'll leave it at this for now. In shorter posts I'll update on each front individually, as I've gotten a lot of questions about the treatment plan for Lyme, what we did for the ANS issues, what came of the Diabetes Insipidus tests, and an overall 'progress report.' Those topics should keep me busy for a while on top of all the other stuff I like to blog about!

I hope we are on the right track now in figuring out which problems to tackle and in which order. My head is spinning a little less these days. And I feel a little less overwhelmed by the chicken and egg dilemma.

Now to forge ahead with the Lyme treatment...

Blessings,

Emily

Photos:  Bird tracks across our front porch today.  I think the one with lots of little prints looks like the bird was doing a little 'snow dance'. The tracks made me smile when I went out to the mailbox today. Remind me though, why I dared go out in that cold to get a stack of junk mail? (No postcards from Mexico yet Dana! :))