First appt with LLMD

My first appointment with a LLMD was in Aug of 08 ~ 2 months after the 3 rashes and one month after I tested CDC positive for ALL 3 IGM bands (23, 39 and 41)... I saw one of the doctors on the list provided, he was cheap and could see me sooner than other LLMD's... Only cost $150 and was highly recommended by another Lyme patient . He spent an hour with me and told me I was probably bit before. Said the first time you are bit you don't get a rash. I found that very interesting! I grew up in NY and could have been bit anytime growing up or spending time outside. My sister had juvenile arthritis in her knee and believes it could be secondary to Lyme. Anyway, this first LLMD made me think that I could have been bit before and my body healed on its own. He perscribed diflucan which is usually given for yeast infections. I found that strange but decided to try his treatment. He said he had very good success with diflucan. I took a small dose of diflucan for 13 days but continued to have burning legs and other symptoms of a persistent Lyme infection. There was only one study that attributed improvement in Lyme disease to diflucan.... When I told the LLMD that the diflucan wasn't helping and asked for an antibiotic or something to help my burning legs. He said " How would we know the diflucan was working if I give you an antibiotic." I decided not to go back to this doctor and get another opinion....

Lyme rash blog continued

I started this blog in June to help educate about Lyme particularly about the rash. I haven't written much because my mother was in the hospital for 3 months and passed away. Now I plan to work on all those things I started including this blog. There is
SO much confusion and misinformation about LYME, even about the rash! As stated in my first blog the rash began as an OVAL rash on my chest and gradually expanded. I should have taken a picture but I didn't know. I also should have received treatment when I only had the one oval rash. Instead the bacteria began to spread and the next week I developed 2 more rounded rashes on my legs. I should have taken pictures of those rounded rashes too. Multiple lesions are present less than 10% of the time and do represent disseminated disease. I finally started to receive treatment on June 13,2008 which was 10 days after the initial rash. The dermatology office perscribed 100 mg of Doxycycline twice a day for 21 days. During that time I developed horrible headaches, felt hot and cold, low blood pressure, insomnia,paresthesia and various other symptoms that would come and go...The worst symptom was the burning legs, 24 hours a day. I could not stand to have anything against my legs ( socks, blanket, pants). My legs literally felt like they were on fire ALL the time for ~ 7 months. I saw 2 neurologist, the first one was June 30, 2008 which was 27 days after the initial rash. The neurologist did an EMG on both lower legs and found no irregularities. Why did I still have this burning pain 24 hours a day?? I asked for more doxycycline and took a total of 4 weeks of that med but yet many symptoms persisted and my legs burned constantly. I researched and read whatever I could get my hands on.... I had to sort through SO much and basically became my own doctor and researcher.... I discovered that the neurological damage(parethesia) may take months or longer after finishing antibiotics because the nervous system regenerates only one or two milimeters each day and needs time to heal. I also found that time and cold helped my legs. Once winter and the cold weather arrived my legs gradually improved but I was left with swollen and sore ankles. I was told that a LLMD(LYME LITERATE MD) was the person to see so I made an appt in Aug with my first LLMD. I saw a total of FIVE Lyme friendly or LLMD's... What an experience that was!! I will write more about my experiences with the LLMD's in future blogs.

Swollen Ankles

Do I still have Lyme disease or not??? My ankles have been swollen for over a year, never had that problem before Lyme disease.