2011

Christmas was very nice; it's always fun watching my boys open up their presents and seeing that Santa Claus came to their house.

I was still having so many neurological symptoms so we went to see a neurologist. She performed various tests on me such as a nerve conduction test and a spinal tap. Both tests came back negative. I have a clinical diagnosis for Chronic Lyme Disease but no tests showing a positive result. The neurologist put me on Gabapentin and Naltrexone to stop my shaking. By this point I was shaking uncontrollably in my wheelchair. My legs, arms, hands and my head were constantly shaking and the meds helped unbelievably well.

In March I got my picc line put back in and got started on 2 grams/per day of Rocephin. I still have so many symptoms and I'm hoping the Rocephin is going to help settle them down. My symptoms slowly got better but I am still unable to walk. In May my doctor put me on IV Zithromax as well to see if more of my symptoms would subside. I am having a lot of pain still in my legs, back and neck so my doctor put me on a Fentanyl patch which is amazing, it has taken my pain completely away.

In August I am still in a lot of pain, the pain is in my legs, back and neck so my doctor put me on a Fentanyl patch which is amazing, it has taken my pain completely away. I am starting to feel much better in that I'm able to take steps from my bed to the bathroom and get around my bed sometimes holding onto the bed or using my cane. I am no longer on the Zithromax IV, it didn't seem to be helping at all so now I am pulsing the Rocephin 4 days on and 3 days off.

I have been having crazy symptoms lately such as terrible nightmares of bugs crawling on me, I am even having hallucinations of bugs being on me and people walking by. It's very scary. I am having issues with anxiety and panic attacks, rages, and emotional stability. I have been crying all the time and most of the time I don't even know why. I have extreme fatigue, I sleep about 18 hours every day and I'm still so tired. The last couple months haven't been much to smile about.

My doctor here in Portland seems to be giving up on me so I have booked an appointment with a Lyme specialist in San Francisco. He put me on a new IV med called Merropenem and I am starting to walk again only around my room. If I do more than that I have trouble breathing and because of the Mitral Valve Vegetation on my heart I'm not supposed to exercise or there could be complications. The doctor also put me on various other herbal remedies, Enula, BLT, an immunoglobulin drink which tastes like drinking an oatmeal bath, its awful, and well so is the Enula and BLT but I can take those drops in a small glass with minimal water and chase it with juice or something. Another antibiotic I was recently put on is Alinia, and it turns your skin and your eyes yellow so it looks as though I have jaundice now. It is actually the smallest side affect I have had from a medication. All of the other meds make me extremely nauseated so I am on a anti-nauseate to help with that.

I am feeling pretty good at times but I tire out easily. I keep praying that things will turn around for my health. I got some bad news about a week ago. My insurance company is cutting me off of all IV meds and my nursing services so I have been doing a lot of research trying to find a way I can get some IV meds but things aren't looking too good. I'm just really scared of going back downhill and ending up very sick and completely bedridden again.