Lyme Log: The Battle Is Joined

Note: Because I find it so difficult to tell some of this information multiple times I have written a blog detailing what has been going on with the Lyme treatment (and the emotions that go with it). Thanks for reading! I never mind answering questions...I just sometimes have trouble repeating the initial part of things.

As Dr. Lyme said during our recent phone consult on July 20th:

The battle is joined. While I am off of the Lyme medications we have a bit of a truce in the battle. When we withdraw from battle things often calm down. As we move forward with treatment the questions are:

Will I stay feeling better off of the medications?

Will I keep getting better?

Will I start to feel worse?

How do I make the most progress towards better health and what is the best strategy?

No easy answer exists for any of these questions.

Here is a run-down of the place I am in right now and the difficult decisions I am working on making.

How have I been feeling since I've been off of the medications for Lyme?

After things settled down from the GI attacks and I had been off of the Lyme meds for a short while I started to notice significant improvement in how I was feeling. My appetite finally came back around the fourth of July.

I noticed that I had:

• More energy
• More ability to sit upright for longer periods of time
• More concentration
• Less fatigue
• Less pain
• Improved mood
• Fewer GI symptoms (i.e. nausea)
• Better sleep

I think it's the closest I've come to looking like a 'normal' healthy person in a long time because I'm also not as pale!

My autonomic symptoms are improved, but have a long ways to go. The longer I was off of the Lyme meds I noticed that I began to be able to do more. My stamina began to improve and I was able to increase the amount of time we were on outings, how long I was sitting up in the wheelchair, how long I could sit up during the afternoons, how long I could watch TV, or how long I could engage in a book on CD.

I noticed little things like not needing to tuck my legs up 'Indian style' in my wheelchair and sitting with my feet resting on the footplate instead for the entire time we were at the nature center. I could walk a little farther in the evenings.

Unfortunately I had a bit of a set back when I increased the Celexa last week, and I feel like I am just starting to see if I can get back to my baseline again. I haven't been enjoying such good days the last week and a half since that debacle. I'm not sure what to attribute this to, and am trying very hard not to worry that it's already time to go back on the Lyme meds.

How long will I stay off of the Lyme medications?

When I first had to suspend the Lyme treatment because of the GI episodes, I was very scared.

I was very afraid that the Lyme would start to 'catch up' with my body even more and make me even sicker.

In the end, being off of the Lyme medications turned into an unexpected and beautiful blessing. I was able to go out and do things I hadn't done in years, I was able to see that I have made progress, and I was able to get a bit of a break from the grind of treatment.

I think it has been a good break for my body and may actually be making it more ready for the next step in treatment. My body seemed to really need a break from combat. I mean, who does chemo and never takes a break?

The break has been good for our whole family.

Dr. Lyme suggested that I continue to enjoy the respite for another month, at which time I will have another phone consult with him to decide on our next step.

If I start to regress or have symptoms before then we can resume treatment sooner. He assured me that by taking a short break from treatment I would not be putting myself in a position of not being able to treat the Lyme--that we are supervising me closely and this won't happen.

What is the next step? The very, very big question.

If I do indeed have Lyme the improvements I have noticed since stopping treatment indicate that we have softened up the infection.

The million dollar question right now is:

Are we going to use IV antibiotics? If so, when are we going to do it? And is now the time?

Needless to say, I haven't been doing a very good job enjoying my 'respite' since I spoke to Dr. Lyme. I've been completely consumed by trying to process what I want to do and if IVs are possible.

Before my next appointment with Dr. Lyme I am working on figuring out the logistics of possibly doing IV antibiotic therapy. This means trying to find a local medical support system, a physician willing to prescribe the treatment, and a zillion other things. It's involved endless medical emails and phone calls.

I also have a whole bunch of doctors appointments and tests over the next few weeks, so it's not giving me much of a 'break' from medical stuff.

Why IV antibiotic therapy? What would it entail?

IV antibiotics are incredibly potent. The drug I would use is called Rocephin and it does an incredible job getting to the nervous system.

To do IV Rocephin, I would need to get a port put in. I would do daily infusions of Rocephin at home.

We have no idea how I would respond to the Rocephin. I could herx worse than I do on the other Lyme medications I have tried so far, or I could tolerate it better than I have tolerated the other medications.

One advantage of IV antibiotics is that they bypass the GI tract. They can still affect it and cause problems, but they do not go directly through the GI tract like my other medications do.

Mostly, IV antibiotics are like bringing in the big guns. If you have seen Under Our Skin you saw that most of the patients used IV antibiotics. At this point they are the strongest and most powerful defense we have against Lyme disease.

But they also do not come without risks and big decisions. Getting a port is one of the most difficult parts of the decision for me.

I also need to determine whether or not there is any possibility for an allergic reaction based on a previous response to Keflex (another antibiotic in the same class).

I find Dr. Lyme to be very conservative and careful in his treatment approach. He's very careful with my body given how sick I am. I do feel that he would not even consider IV therapy for me if he did not feel that it was worth the risk and hopefully the benefits.

How am I feeling about all of this?

Okay, the truth is I'm freaking out! I have not been enjoying being off of the Lyme meds because I'm so stressed about trying to see if doing IV therapy is even possible.

I'm so torn between feeling that this is the best next step if I have hopes of improving and feeling absolutely terrified.

When I had my gallbladder surgery in 2005, I had a PICC line. The PICC line was a disaster and I had nothing but problems with it. Granted a port is different, but it still carries risks, especially for infection and blood clots.

The hardest part is that I have never fully come to terms with how traumatic that time in 2005 was to me. I felt like I was going to die and some days I wanted to die. I'm not trying be be a drama queen here. I'm just stating a truth that I have rarely spoken of. As I told Maxine about this the other day she said that in all of the years she has known me she had never been so scared or so worried about me as she was during that period after my surgery. She said that she saw me and asked God what to do. It was scary and validating all at the same time to hear her say that.

I know how sick Lyme medications can make me and how much sicker I could get on the Rocephin. I know how sick my body can get and that is terrifying. I never want to go back to how I felt after my gallbladder surgery in 2005.

I know that emotionally when we begin to talk about ports and IVs my mom and I immediately associate them with that time in 2005. I have to keep reminding myself that this is a completely different situation and my body is different now. I wasn't even being treated for Lyme at that time.

Talking about getting a port and doing daily IV infusions has taken me back to this really scary time in my life.

I also know that I have a finite amount of time in the next month to do things I'd like to do before I resume treatment--whether it be IV Rocephin or the same course I was on previously.

How do I choose how to spend my time? I want to do so many things! Yet many days, like today, my body still doesn't cooperate with any of my 'plans'.

I know that choosing to go on the IV Rocephin not only means that I am going back to herxing all of the time, but that I am quite possibly going to feel even worse than I did on the other medications.

It's really hard to have that cloud hanging over my head and stay in the moment of respite right now.

The decision to go on IV antibiotics is a very big one. It needs to be weighed carefully for so many reasons. Most of all the decision needs to be made as a family. Can we do this as a family?Do we have the resources? Do we have the mental, physical and spiritual strength to take this next step?

My mirror is pretty foggy right now. I'm hoping if I can quiet my mind enough to listen, I'll hear the answer.

Blessings,

Emily

Photos: Blanket flower in various stages of blooming.

Another Visit from Miss Rebekah and Mr. Fussypants

Rebekah and Kale came over for an afternoon visit today. Mr. Fussypants furrowed his brow and frowned when he woke up and Rebekah tried to get him to smile. He was so tired today that he slept almost the entire time Rebekah was here.

Sadly, this meant no cuddle time with him. But it did mean lots of girl talk time with Rebekah which was great!

Rebekah brought a version of a 'milkshake' for us to eat--made with frozen chocolate cocunut 'ice cream', vanilla and chocolate rice milk and strawberries. So delicious and such a treat to have someone bring something over that I could eat! Rebekah and I are on similar diets, so it works great! I felt sooo spoiled.

I needed the time out from listening to my head spin about medical stuff. Rebekah and Kale are great medicine for that. Kale is getting so big and it's so much fun to watch!

Thank you so much for the visit Rebekah!!

Love,

Emily

Photos: Rebekah manning the bouncy seat while Mr. Fussypants naps; Mr. Sleepyhead.

Konked Out: Me AND Mr. Goofy!

Here's Asher caught sleeping in one of his favorite positions. What a goof. He makes us laugh every time he does this. Last night I caught him sleeping like this in my bedroom (I had never seen him sleep this way in there before) and he didn't move when I got out the camera. I did not take a picture of me konked out because it is not a pretty site this week!

I have been pretty konked out this week.

All of my testing and appointments went well on Monday. I have a lot of decisions to make and am still awaiting test results. Hopefully I'll blog on all of that soon.

In the meantime I'm just checking in because I haven't been able to blog at all this week. I decided while on a break from the Lyme meds to try increasing my Celexa (anti-depressant) bit by bit.

I wanted to increase my Celexa for two reasons:

1. I tend to need a bit of anxiety control and something to help with circular thinking. Also, when I'm on the Lyme meds, I get really down from feeling so crappy all of the time.

2. Anti-depressants are one of the first line treatments for ANS disorders (see below for a more detailed explanation of WHY they help, as I've been asked many times) and can really be a big help in symptom management. It's just trying to find the right one and the right dose!

I had hoped a higher dose would help with both of these things, but it appears my ANS symptoms are worse on the higher dose and better on the lower dose.

Now seemed like a good time to work with the Celexa dosing because I wouldn't have other variables on the plate at the same time.

Please note that I'm using a little teeny syringe to increase by 2.5 mg intervals (1.25 ml) at a time. This is a ridiculously teeny tiny amount!

The first increase in early July went fine.

The second increase. Well, not so hot.

I felt increasingly weak, fatigued and dizzy as the week progressed. Wednesday I noticed I had more and more trouble sitting up, trouble concentrating, and other classic ANS symptoms.

On Thursday morning I woke up to pee and just made it back to bed before fainting. It's the closest I've come to fainting (without some major crisis like the GI episodes) in a very, very long time. I felt like I was back on the tilt table.

So, I knew something was off, but I just wasn't sure what.

Today I woke up still feeling really exhausted and slept most of the day. I have been awake very little, am very pale, and very weak.

I emailed my doctors and I'm going to go back to the dose I was on before Monday.

The whole thing made me into a bit of a crankypants this week because I had really hoped to have some good days, a visit with a friend today, and get some medical stuff done. I am frustrated to have lost a week off of my Lyme meds to another med change that messed me up!

Hopefully this weekend things will settle down and my body will get back to feeling like it was on the lower dose.

Until then, Mr. Goof is keeping me good company.

Blessings,

Emily

Note about why anti-depressants work for Autonomic dysfunction from the DINET website: Selective Serotonin Reuptake Inhibitors (SSRI's) are sometimes used to treat those with autonomic disorders. SSRI's are used because serotonin is the principal neurotransmitter that the brain uses to govern autonomic control, in particular to govern blood pressure (Haran, 2004). Studies have shown that some patients with autonomic disorders may have disturbances in central serotonin production and regulation (Grubb & Karas, 1998). SSRI treatment can suppress the sympathetic nervous system (Shores, Pascualy, Lewis, Flatness & Veith, 2001). Venlafaxine is particularly effective, possibly due to its actions on norepinephrine as well as serotonin. It has been reported that SSRI's may be effective in treating the chest pain that is associated with dysautonomia (Low, 2000). However, the FDA has issued a public health advisory regarding antidepressants, and they should be used with caution.

Photos: Asher sleeping in one of his favorite positions. He sleeps like this under the kitchen counter ALL of the time, especially if we are there at the stools eating or talking.