Antibiotics: The First Go Around

Modified from update sent via email January 29th, 2006 to family and friends....

It has been ages since I have sent out an update. I've been waiting to have some 'news' to share. It's been a busy couple of months...and this update is a bit long! Sorry!

Most developments have happened on the medical front--so I'll sum that up first. (For those of you who are not medically minded just skip over this part!). As most of you know, we travelled to NY in November to see a Lyme doctor.

In short--we have decided to take a leap of faith (as my doctor says) and treat me as if I have Lyme disease. I am getting ready to start high doses of antibiotics.

I feel a mix of emotions: Excited that we finally have some direction for treatment. Terrified about how I will tolerate treatment and whether I will respond to treatment. Frustrated that we didn't think of Lyme as a possibility sooner. Uncertain whether this is the right direction or not. Hopeful that we are at the beginning of finding answers and healing. Grateful that I now have two amazing doctors helping me.

The visit and testing with the Lyme doctor were very extensive, however Lyme testing is a very murky area of medicine. The tests are inadequate and difficult to go on. My test results from the first round came back 'suspicious but inconclusive' according to the Lyme doctor. We then did some repeat testing and got another positive result--making it less likely that the earlier positive was a fluke. However, my 'positive' is not super-strong. I have some bands on the Western Blot, and a reactive Elisa.

In the meantime, I had several MRIs done to rule out a possible anatomical cause for my POTS, such as cervical stenosis or Chiari malformation. These came back clear, which made my main specialist lean more towards Lyme disease. I was able to have a long phone consult with him this month. He uses a wellness scale--and rates me a 20/100. Yikes! In patients like me, who have been unresponsive to all of the treatments available for the POTS, he feels that there is usually something else going on such as the anatomical abnormalities that the MRIs ruled out. Given my level of neurological symptoms (cognitive problems, pain, etc), he felt that Lyme was a possibility. He has had a few other patients who did intensive antibiotic treatment and responded to it.

Typically, my doctor feels that within three months of seeing a patient for the first time, he is able to find something that works to some degree, whether it be PT or meds or eliminating dairy from her diet. It is not an endless trial and failure of meds and other techniques, as I have had over the years. He did not feel, at this point, that there were other medical conditions to look into or rule out. Some doctors believe that any patient with a multi-system illness such as Fibromyalgia, Chronic Fatigue Syndrome, POTS, etc. deserve a shot at long-term antibiotics if they haven't responded to other methods of treatment.

After our conversation, my POTS doctor called the Lyme doctor and they agreed that treating me for Lyme was the next best step. So, while we cannot gaurantee for sure whether or not I have Lyme...we are taking a big leap of faith to treat me as if I do. I am trying very hard to let go and trust in this! Not knowing for sure is so hard!

I have two friends who I met through my support group who are walking me through the Lyme process step by step. I have been so blessed to have them holding my hand and cheering me on every step of the way. I am always amazed by the kindness of others who have travelled the path of illness and reach out to try to make the path of those who follow a bit easier.

Okay...the medical part is over!!! In other news...

I cannot believe that it is the end of January already! We have had such a mild winter--I like the sunny days, but I would like a little more snow! (shhhh....don\'t tell my mom I said that!)

Asher is still wild, but we met with a trainer who helped us with some techniques to see if we can better manage his anxiety. So far, he's been a bit better on the anxiety meter!

The holidays were a hard one for our family, as my 91 year old grandmother (my dad's mom) died in early January. I was very close to her and it was very hard not to be able to be there for the funeral and be with my relatives in Iowa. Grandma always amazed me with her kindness, love, gratitude and goodness. I loved her so much and have so many wonderful memories of my conversations and visits with her.

I had a LOT of visitors for the over the holiday. Unfortunately, I was feeling super-duper lousy...but everyone popped by for little visits anyways which was so kind since I wasn't great company! I saw high school friends Jeannine, Angela, Sarah and Ted (and his wife, Erin).

Ted and Erin brought me the fourth Harry Potter book on cd (which they listened to driving cross-country) and it is 23 cds! So, that should keep me busy for a while. I'm finishing up a mystery right now, Blacklist by Sarah Peretsky, which I am enjoying and getting ready to listen to Friends, Lovers and Chocolate by Alexandar McCall Smith. After that, I'm ready for some good book suggestions--ones you think would be good on tape! I'm thinking of tackling some of the ones my friend Marla-the-reader has recommended as well as some others folks have suggested. It's just so hard to choose!

Otherwise, I haven't felt well enough for much else--not too much email and no movies. I have been able to some knitting which I always enjoy. I've been a bit consumed by the medical stuff and dealing with the death of my grandmother. Mom's getting into the groove of her semester--only two more after this one until retirement! And, I am getting in the groove with a new caregiver, Fay. I really miss Erika, but Fay is great too. Each person is so different.

Well, I know this is a bit long...but I haven't caught up with many of you for quite a while. I owe so many of you a 'real' email my inbox looks like a train wreck...I'm sorry! I hope that your 2006 is off to a wonderful start!

Lots of love and blessings,
Emily

Photo: 'Lord Asher' hanging out in one of his favorite spots--on the ottoman (which he things is HIS). Also, he's looking quite handsome in his penguin bandana after a trip to the groomer.