Neurologist, Rheumatologist & Therapists

(September 2011) So I am now home and as I mentioned earlier I was on Rocephin intravenously having a piccline for a total of only 28 days. I say only because that is all the doctors said I needed. I did some research on the internet while I was home and found that for someone in the late stage of Chronic Lyme I needed to be on intravenous meds. for at least 2-3 months. I fought and begged all my doctors. They said there is no research that said I needed to be on it longer.. even someone with all my neurological deficits. The piccline was then taken out without my approval but if you do not have a doctor to write you a script for antibiotics you are pretty much out of luck. My primary was very honest that she did not know anything at all about Lyme so my neurologist from Jefferson (not the neurologist I was seeing before) was in charge of all my Lyme treatment.


So when I came home I had a homecare nurse monitor me 1-2x a week on my intravenous meds. I also had an Occupational Therapist and a Physical Therapist come about 4-5x a week. I did learn how to flush my own picc line and administer my own medication (of course with the help of my family member who was with me for the day). OT and PT would be with me for about 2 hours a day.. and boy was I exhausted. It was so hard for me to be home and not use of my right leg and my right arm. I had to have people cook for me, clean for me.. I needed someone to care for me all the time. I have a chair and a rail in my shower and had to have someone home while I was bathing incase I fell. If I wanted to go out I needed my walker or w wheelchair.. I was an active preschool disabled teacher-.. and now I lost all I knew.
In home PT/OT therapy I worked on eating, brushing my teeth and hair, cleaning, dishes, cooking, dressing, getting out of bed and into bed, walking, sitting, weight shifting, puzzles, ziping, buttoning, catching a ball, and I so many other things. The therapists I had from Holy Redeemer ( Anna and Lori) were WONDERFUL.. They really cared for me and would help me everyday. After working hard for 5 weeks at home therapy I finally graduated to outpatient therapy where I currently am now. I go to outpatient PT/OT at Victory Physical Therapy in Mullica Hill , NJ. The therapists Mike, Joe & Stephanie as well as the PT Aide Brian are so caring and are helping me to fight my way against this disease every sing day. I am so lucky to be in such a great place right now. I am going to talk more about therapy later and post videos as well.


(September-present day)So far since I have been home from the hospital I have seen my neurologist 4x. I would like to say that each time I go I do make some progress but not enough to be "me". I have neuropathy on my right side ( arm and leg) and I still have mild Bells Palsy on my left side. The nerves cross over from your face to body that is why it is on my left face but right body. Even though prior to being admitted into the hospital I felt my left side go numb that day I think they got the meds in me fast enough to stop it from being damaged. I know that my left side was not like it was before but I am about 99% back to where I was on my left side. I also lost hearing in the bone on my left side, which is most likely permanent. I can hear if someone is talking to me but I think it has to do with certain tones… I am not really sure. I would say as of right now on a scale of pain/discomfort of numbness where both my arm and leg was a 10+ in the hospital I am about a 3 on my right arm and an 8 on my right leg. The neurologist is happy with my improvement and I know it is because of going to therapy where I give 110% everyday! He said that I have severe nerve damage from the Lyme and the smaller nerves will heal faster than the larger ones. So far that statement is true. I am only on Gabapentin (Neurotin) from the neurologist which he said all he is doing is masking my pain- not healing anything (that is why I am now seeing specialists because I need someone who knows Lyme since I am still pretty sick).


 When the neurologist tests me he does all the tests where I have to pull/push against him, pricks my leg to see if I can feel it, vibrations, eyes closed touching my hand to nose. All of these things have improved since August but I would say I am 85% better with my arm (I am still dropping stuff out of my hand and have trouble over reaching) and I am about 40% better with my leg. I am out of work from my neurologist until April in when I am hoping to resume my full time teaching position but he doesn’t seem like I am going to be ready.. fingers crossed!
(November 2011) around Thanksgiving I started having so much pain.. I mean I thought I had bruises ALL OVER my body! Every single joint hurt, my ribs, my spine, my jaw- everything. I called my primary and the neurologist and they told me to go back to the ER. All the ER was able to do for me was to give me IV pain meds and send me home. After going home I made an appt. with a rheumatologist and was put on Celebrex. I had bloodwork taken at the end of December 2011 and just saw him last week, January 31, 2012. He told me that he found some of my bloodwork elevated and positive that I may have auto immune disease or chronic fatigue syndrome. I researched both of these and it seems that many people with Lyme have one or both of these or their Lyme is misdiagnosed with one or the other... so we will see. Waiting for him to call me back this week with my blood results.


I am now seeing a LLMD and an integrative medicine doctor. I saw them both in January 2012 and I had my second appt. today with the integrative medicine doctor and my second appt.. is tomorrow with my LLMD. ( Lyme Literate Medical Dr.)
I am going to go through what both of these doctors found tomorrow night. Thanks for all who are reading following! :)

YAY! I can finally cut my own food again!!! :)