Wednesday, June 8, 2011

worn


Just got back from Washington D.C.  I've been recovering from traveling and also just thrust back into antibiotic treatment so my body is not treating me well.  But for so many of you wondering, here is how the appointment went:

I was real nervous going into the appointment so I got a little shaky but it was fine.  I keep a detailed account of how I feel each day then condense it before each appt and send it ahead (a Word document) to be put in my chart for the doctor/P.A.  So when our P.A came in (we love her sooooooo much), she spent a long time going over every detail with us.  She loves that we do this detailed account.  I mean, when you're going 2 months between appointments it's nice to have symptoms and such written down to remember and also for the doctor to see a trend in your health to help determine what is helping/hindering you getting better.  I get praised by nurses and staff and doctors for doing this.  It helps  especially when you have Lyme-brain to have something to look at that refers to the last few weeks so you can help describe symptoms and such.

She spent from 2:15pm-4pm with us!  We didn't feel rushed at all and we were able to ask all the questions we needed to.  And she addressed all our concerns.  It's nice to have a doctor's office that really cares and doesn't focus on how many patients they can get through each day.

Basically the P.A said that it definitely looks like my immune system is sort of "catching on" that it needs to work to fight and that is a really good thing.  And as far as the last rounds of treatment that were targeting Babesia, she thinks based on my symptoms while on the meds, that it really did work on that "bug" and that since only just the last two weeks I have started having normal "off" weeks (off the medicine) she wants me to do just one more two-week round of the same meds (all done "paint medicine" after this!).  

After that, since my immune system is showing more improvement, she's going to intensify the protocol.  So instead of taking meds M-W-F, I'll be taking some new ones M-F for two weeks.  Then two weeks off.  I'll do a few of those then consult on the phone with her to see how it's going and then go from there.

She did physical tests on me like she did last time.  My right side was bad at the resistance tests this time.  My right side is the shaky side.  We're going to try to get my legs strengthened a bit in the meantime with some exercises I can do while sitting and laying back since I don't have much energy to do anything else!

I've been having some "stress" herxing where it feels like I'm having a heart attack (pressure, dull pain in my chest and tingling in my arm).  I had already called a nurse about this when it first started and was told to up some medicine that I'm on and that did seem to help a lot but my doctor said the real way to avoid this is to avoid stress all together!  Easier said than done obviously :)

She gave me a prescription for pain medicine.  So far I've been able to deal with the pain but on the last rounds of treatment I started to really suffer.  So when I'm in that excruciating down-to-my-bones pain, I can try it.  I think it will make me loopy but I'm glad to have it for when I really need it.  It's a non-narcotic pain med thankfully and she said it works more to sort of target that nerve related pain.

I also asked if I could stop taking the b12 lozenges because I thought they weren't working AT ALL.  And I asked for a prescription for b12 SHOTS.  She said, 'of COURSE!'.  She said for some people the shots work better than the lozenges and she said I could get a shot right then and the nurse would show me how to do it myself in the future.  I get to do it twice a week.   It's a special preservative free shot so it comes from a compounding pharmacy.  I did notice a difference after the shot (a few hours later).  It helped my energy greatly and low-energy/fatigue is what has bothered me the most as a mom.  So we're hoping the regular shots will at least give me a day or two of more energy.

So Matt asked at the end of the appointment if she could tell me in her best estimate where I was in the course of treatment (beg-end).  She said she would be very honest so what she said wouldn't be her being optimistic or playing it safe because Matt told her that I get discouraged ALL the time about how I'm doing.  She said if my treatment were a big mountain peak (which she also said isn't the best analogy because there are LOTS of ups and downs as you go up the mountain AND down), but if it were a mountain peak, then she thinks I'm just slightly under the peak -- almost ready to reach the peak and go down.    She said I'm pretty much following the model of where they like to see their patients.  I'm not doing better than most, but I'm not doing worst than most.  I'm average.  Looks kind of like this:
It was encouraging to hear but also not because reaching the peak and going down is almost harder than going up the mountain because as your immune system is better able to handle stuff, they intensify even more your regimen so my body will be fighting a lot harder.  So scary!  Treatment weeks will be harder, but the hope is that as time goes on, those will get easier AND my off weeks will show more strength in body.  But it was neat to definitely feel like progress has been made.  Even I can see that.

So after we got everything answered and stuff, she went out to prepare prescriptions and go over her notes with Dr. J.   Then he came in (as he always does) and briefly talked to us about my treatment and was glad that things were going "according to plan" (as much as it can with Lyme!  It's so different for everyone!).

So you can be praying for the next round of new treatment (in about 4 weeks). It will probably be SO hard.  If anyone wants to come help and play with the girls, you should! :)

Keep praying for us.  It still going to be real hard....and by no means am I "better".  But we are seeing progress so it is encouraging!
Sight-seeing at Mt. Vernon (I was in the wheelchair most of the time but did stand up to take pics!!)


4 comments:

  1. Love the picture of you 2 and the good, detailed report. Helps me know how to pray. Thank you for your example of perseverance and trust in the Lord.

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  2. I have those "stress herxes" constantly. What has helped you with those?

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  3. Libby - I'm on Ativan (for nerve stuff/tremors) so I just upped that a teensy bit and it has helped a LOT. Also just relaxing when I feel that I am not feeling great (removing myself from a stressful room of loud kids or people).

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  4. So glad to hear you had such a comprehensive and helpful appointment! We continue to pray for you guys!!

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