Well I had my last dose of IV meds last night. We have decided to maintain my picc line because there are two documents pending with the insurance to decide if there is still hope that I might still have a chance of my meds being covered. In the meantime I will be talking with my doctors to decide which oral antibiotics I will be starting. If the IV meds aren't covered then there's no way we can pay for them. I will have my line pulled and switch to oral in that case. With having been on IV for quite awhile, switching to oral meds might be a good thing for me. They are harder on your insides but so are many meds that I'm on. As long as I continue on the road to health then that is all that matters at this point. I was quite upset the last couple weeks with battling with my insurance company and talking with doctors and my infusion company, it's been quite the ordeal but you have to come to terms with it that insurance companies are quite stingy with the Lyme Disease medications because of the long term cost and the diagnosis itself. We just have to find other ways to get meds that are going to keep me going!
I also have another option to go with the oral meds. I was tested for CCSVI which means: Chronic Cerebrospinal Venous Insufficiency (CCSVI or CCVI) is a term developed by Italian researcher Paolo Zamboni in 2008 to describe compromised flow of blood in the veins draining the central nervous system. Zamboni hypothesized that it played a role in the cause of multiple sclerosis (MS).(Wikipedia). I tested positive for this and have a couple problem areas. Here is the conclusion from my procedure: Abnormal valve in proximal internal jugular vein causing stenosis of internal jugular vein. Left illiac vein compression by right common illiac artery and spine causing left common illiac vein stenosis and left internal illiac vein reversal. With getting the procedure done most people find that by fixing the restricted blood flow to the brain really helps with headaches, brain fog and confusion. The vein that is pinched by my spine and artery, I was told by the specialist that by fixing this problem, I might be able to walk again. Which isn't a guarantee but if it helps at all it would be huge! I see my San Francisco doctor in January and I will be discussing this procedure with him and I will probably have it done around the end of January, tentatively speaking.
Saturday, November 5, 2011
Wednesday, November 2, 2011
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.
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.
2010
The year of 2010 had been a really rough year in many ways. I have actually been feeling quite well as for my symptoms. I still get fatigued easily and if I allow myself to overdo things symptoms will start to come back and the most noticeable one is losing the loss of use of my legs. I had a procedure performed that went wrong and had to be fixed so I found another Gynecologist to perform a Laparoscopic Assisted Vaginal Hysterectomy, that was pretty rough but I got over it. From then on I was feeling really good and therefore had my picc line pulled out. I had a wonderful summer, my sister got married and my Grandparents celebrated their 60th Wedding Anniversary.
Once October rolled around, things went downhill. After finding out about my Endocarditis, I started to have most of my symptoms come back. I ended up back in my wheelchair, having seizures, o.c.d., pain in my legs and back, very stiff neck, memory difficulties, sensitivities to light and noise, loss of appetite, I had lost a lot of weight over the last few months. I was barely over 100 pounds. Nausea plays a big roll in my appetite as I'm sure it does for everyone that is just sick with the flu.
It is now December and I am having extreme stomach and abdominal pain. Within a few days my stomach had ballooned and the pain was so strong that I couldn't move without crying. I went back in to the hospital and had my gallbladder removed and found out that I also had a torsed ovary that was also to be removed at the same time. I have never experienced so much pain. At least all of my surgeries were done before Christmas so I could be home out of the hospital.
Once October rolled around, things went downhill. After finding out about my Endocarditis, I started to have most of my symptoms come back. I ended up back in my wheelchair, having seizures, o.c.d., pain in my legs and back, very stiff neck, memory difficulties, sensitivities to light and noise, loss of appetite, I had lost a lot of weight over the last few months. I was barely over 100 pounds. Nausea plays a big roll in my appetite as I'm sure it does for everyone that is just sick with the flu.
It is now December and I am having extreme stomach and abdominal pain. Within a few days my stomach had ballooned and the pain was so strong that I couldn't move without crying. I went back in to the hospital and had my gallbladder removed and found out that I also had a torsed ovary that was also to be removed at the same time. I have never experienced so much pain. At least all of my surgeries were done before Christmas so I could be home out of the hospital.
Tuesday, November 1, 2011
2008-2009 Update
I haven't wrote in here in quite awhile but I'm going to try and give an update on what's been happening since 2007.
First off I've had another child on April 18, 2008, in Saskatoon, Sk. Canada. His name is Ethan. He was born one month premature because I was too sick to carry him anymore and I felt like if anything happened to me I'd at least want my baby to survive. We both came out of the c-section procedure very well. I finally convinced my gynecologist to try some antibiotics. She saw how sick I was and we made a very good case as to me having Lyme Disease. When we got back home and saw my regular g.p. both of my sons as well as myself got tested for Lyme Disease and the boys came back positive, I had a few bands that showed activity but not a confirmed diagnosis. Our g.p. started the boys on medication for about 4 months and they are doing very well to this day. I was also started on some meds and IV Rocephin. I was so very sick, having symptoms from seizures, inability to walk or use arms, double vision, extreme pain, incoherent, speech problems which led to a complete inability to speak and the list goes on.
Within about 2 months of being on the IV Rocephin, I went from being hospitalized to up and walking around. I was able to come back home to Portland, Oregon and take care of my kids, which was incredibly amazing from the way I was just a couple months ago.
Something I didn't realize was that I would be battling this for years to come. The next few years I have been on and off of IV Rocephin when I'm ill and it brings me back to life. I am still extremely fatigued and can't overdo anything but that is better than being bedridden. After medications I am back up walking, even dancing, I can take my kids out for a walk, cook dinner, clean the house and even drive! Then things turn for the worst when you are least expecting it and I'm back to being bedridden. Life is hard, very hard. The good thing out of all of this is that my kids are healthy. It's a horrible feeling knowing that you made your kids sick.
First off I've had another child on April 18, 2008, in Saskatoon, Sk. Canada. His name is Ethan. He was born one month premature because I was too sick to carry him anymore and I felt like if anything happened to me I'd at least want my baby to survive. We both came out of the c-section procedure very well. I finally convinced my gynecologist to try some antibiotics. She saw how sick I was and we made a very good case as to me having Lyme Disease. When we got back home and saw my regular g.p. both of my sons as well as myself got tested for Lyme Disease and the boys came back positive, I had a few bands that showed activity but not a confirmed diagnosis. Our g.p. started the boys on medication for about 4 months and they are doing very well to this day. I was also started on some meds and IV Rocephin. I was so very sick, having symptoms from seizures, inability to walk or use arms, double vision, extreme pain, incoherent, speech problems which led to a complete inability to speak and the list goes on.
Within about 2 months of being on the IV Rocephin, I went from being hospitalized to up and walking around. I was able to come back home to Portland, Oregon and take care of my kids, which was incredibly amazing from the way I was just a couple months ago.
Something I didn't realize was that I would be battling this for years to come. The next few years I have been on and off of IV Rocephin when I'm ill and it brings me back to life. I am still extremely fatigued and can't overdo anything but that is better than being bedridden. After medications I am back up walking, even dancing, I can take my kids out for a walk, cook dinner, clean the house and even drive! Then things turn for the worst when you are least expecting it and I'm back to being bedridden. Life is hard, very hard. The good thing out of all of this is that my kids are healthy. It's a horrible feeling knowing that you made your kids sick.
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