I found a social networking site for people whose lives have been impacted by Lyme disease. Lynette and I are both members now. In just a few months Lymefriends.com has gathered up a membership of over 600 people. There is an amazing amount of first hand information available through this network. These people all know the difference between Dr. J in CT and Dr. J in SC. They also have first hand experience with all of the co-infections, diagnostic testing, treatment and complications of Lyme disease. Lynette has befriended a couple of Lymefriends members who's situation is similar to hers.
Some parts of Lymefriends are rather heavy and serious, but there is plenty of hope, stories of recovery and humor as well. One discussion thread that was recently started was, "You know you're a Lymie when...". Of course there were many posts that only a Lymie would get. This was my contribution to the fray:
You know you're a Lymie when...
You need to call the pharmacy to refill prescriptions and you have their phone number memorized.
Lynette got the full 7 page report from her visit with Dr. J in the mail today. I haven't had a chance to look at it. She read some if it over the phone to me. I think we will have to do a lot of Google searches to figure out what it is trying to say. It's full of so many technical medical terms and medical abbreviations.
Lynette is now scheduled to get her PICC line two weeks from today. PICC stands for Peripherally Inserted Central Catheter. What this amounts to is an IV in your arm with a tube long enough to reach your heart. This is the most effective way to deliver medicine to the whole body. When you swallow a pill, it is introduced to a very nasty acidic environment. Oral medications have to be formulated to deal with the harsh environment of the stomach. A PICC line allows you to deliver medicine straight into your system with no interference from hostile environments.
The plan is that the IV treatment will be pulsed over a 5 month period. Alternating days and a week off every month or so. The PICC line is actually put in at a regional hospital close to Dr. J's old North Carolina practice. We will go to Mooresville for the PICC line and then head down I-77 to Ft. Mill for the first dose and instructions on infusing and IV care.
The IV antibiotics are the next stage in her treatment and cure. If they work as expected, she will continue oral antibiotics for another year or so. Then we will all cross our fingers that its gone.
Lynette has been very vigilant in her medication and supplement schedules. She is very conscious about what she puts in her body now. All of this attention to her nutritional health will surely help her heal sooner.
Anna seems to be doing well. She had a couple of days after she started taking her antibiotics where she was pretty tired. She went to Carowinds yesterday and she was pretty wiped out when she got home, but who wouldn't be? Anna is also very good about taking her meds. We have her taking a couple of supplements as well that have been very beneficial for Lynette. Anna is scheduled to go see Dr. J on June 23.
I still wonder if I have this disease. It's impossible to get Lyme disease from a tick crawling on you. This is all the evidence Lynette has of a tick encounter. Dr. J seemed to think that the damage displayed in Lynette's brain MRI was too severe to have happened between September and December. This suggest that she's had the disease much longer than when her symptoms first showed up. So what if Lynette has had this for a long time? What if Anna got the disease congenitally from Lynette? What if I was the original source of infection for Lynette? No bullseye rash, right? I truly believe that there are people who's genetic makeup makes them more susceptible to Lyme disease. I also truly believe that there are people carrying around this bacteria who will never show symptoms or won't show them until they are old and weak.