Things are all over the place

I hope everyone had a wonderful Thanksgiving. It was nice to have some family time. Happy Thanksgiving to all my Lyme friends, my friends that stand with me and send me a hello just to brighten my day, my entire family that has been behind me keeping me positive and hoping to see the light at the end of this miserable time. And for my husband who stands with me everyday and has to see what I'm going through although there's isn't much he can do to take away the tremors, the pain or the disease itself. I love him very much for always being by my side!

I am on a diet that is Paleo and Gluten free which makes it very hard to eat much of the Thanksgiving Dinner. So I tend to slip a little on my diet. After doing the diet, when I go to eat something that isn't Paleo or Gluten free, I really notice a difference in my digestive system. My stomach feels incredibly full, my guts hurt and I just don't feel very well. It is a great diet to be on, I feel healthier, I have more energy, and I know I'm cutting out a lot of unhealthy foods that I don't need.

This month has been an up and down month. My nausea seems to have increased, I have a lot of pain in my feet, legs and hips and I'm dealing with anxiety, I can't handle noise and I'm short tempered. I am on an incredible amount of antibiotics, natural remedies and IV medications. You'd think from taking all of these it would at least mask the problems. I make up my pills for about 3 days at a time. I take pills morning, afternoon, dinner and evening, as you can see this is my assortment that I take 4 times a day plus I take 3 IV's in the morning which are IV Zofran, IV Ceftriaxone, and IV Glutathione.

My port that was placed in my arm lasted about 7 months until it became clogged with fibroids and the line showed I had leakage lower in the line by ultrasound. I couldn't push meds into the line and there was no way to get blood back. So back into surgery and I had that one removed and at the same time I had a new port put in, on the right side of my chest. The line is closer to my heart and sits lower into the Superior Vena Cava. My meds flow a lot nicer into the line and I can easily pull back in order to get blood.

 I started on a medication called Metoprolol. It was prescribed to lessen my temors. My hands are shaky, my whole body shakes although you can't see it shaking. My body stiffens in order to stop the shaking and by doing this my body tires and I'm off to sleep. When I started the Metoprolol it really helped right away with the shakiness. I didn't feel shaky at all anymore. The medication worked great except that I was sleeping all day and all night, everyday. I would get up and walk Zachary to school and by the time I got home it felt like I had just run a marathon. Every muscle in my legs were sore and extremely tired. Off to sleep I went. Our nanny shows up at 9:00 so she would play with Ethan and then go pick Zachary up from school because I couldn't wake up enough to even get myself off of the couch. I then cut the dosage in half and it seemed to be really working, I was able to take and pick Zachary up from school, we would come home for lunch and then off to swimming lessons and some days we had hockey and had to leave by 4 and I was awake for the entire day which was huge! lol.

I recently stopped the Metoprolol because I started developing sleep talking, I don't mean just a little bit here and there, I mean I would be talking constantly all night long and I have no recollection of it other then Trevor saying he didn't get any sleep. I am also doing leg stretches and arm stretches, I get out of bed and turn the radio on, I go to my dresser and start picking out clothes, and at times I'm pushing Trevor trying to instantly wake him up because something is wrong. I will remember a short little piece of the night such as standing at the dresser but other then that I have no idea. So I mentioned this to the doctor because I don't want it to get out of hand and he suggested stopping the Metoprolol because that is probably what is causing it seems how I haven't really started anything new.

The last couple of weeks or so I have had a lot of bone pain. I get out of bed and it feels like I broke both of my ankles. Once I walk a bit they loosen up. I also have this pain in every bone in my feet, in my legs and also my hips and back. I'm really not sure what is causing all this pain all of a sudden. I thought maybe the pain would subside as well as the dreams when I stopped the medication Metoprolol. It hasn't yet!

Good thing I have a full pharmacy in my house! I added more of my Lorazepam in order to lessen the shakiness and I have Voltaren Emugel to rub on my feet and knees and where ever it is needed. Things have been feeling better but it is only a band aide for now.

I will be adding two more IV medications to my already large cocktail. I am adding Flagyl which is an IV antibiotic to rid bacteria from your body. The second IV is Amino Acids Nutrition which is a method of giving vitamins, minerals, and other natural substances directly into a patients bloodstream. It helps conditions such as hypertension, COPD, asthma, fibromyalgia, chronic fatigue syndrome, diabetes, hepatitis and even the common cold. I am really hoping the Amino Acids help me. I have such trouble getting out to do things, I feel like I just don't want to leave the house, I would rather stay in bed or lay on the couch with a fuzzy blanket for the entire day. I have very little energy, I can walk Zachary to school and back and then I need a break because I'm too tired to do anything else. I feel very sluggish, my bones hurt and I feel tired all the time. I definitely need a pick me up! All of these meds that control my tremors and seizures calm me down and make me feel so relaxed I could sleep all day long. We will see, my medication should be here this week and I will be infusing either Friday or Saturday.

Wish me Luck!!!

Showing Improvement!!!

I have had my ups and downs lately. More ups than downs which has been good! I was recently in Redwood City, California meeting with my doctor. The practice that I go to is compiled of one Naturalpathic Physician, Dr.Mischa Grieder, one physicians assistant, Yvonne Lin and the main Medical Lyme Physician whom is Dr.Steven Harris. I see either Dr.Harris or Dr.Mischa Grieder every 3 months and in between that time I have a phone consultation once every month in between appointments. Since last seeing Dr.Harris in May of 2012, I continued to have phone consultations with Yvonne Lin. My IV medications had been switched to Invanz and Clindamycin and Glutathione. In switching off of the Ceftriaxone which is my staple medication, I began to slowly go back downhill. By the time I went to my appointment on September 6/2012, I was back on crutches because my legs were numb, my brain had slowed down as well as my speech, I was quite stiff and was quite shaky. My face started to droop on the left side, mainly my eye and my mouth which looks like bells palsy but it doesn't take long before it settles back down. It is always very upsetting relapsing with all of these symptoms again, but they do settle down, the question is when and how long? I saw Dr.Mischa Grieder and was put back onto the Ceftriaxone and continued with the Glutathione as well. We dropped the Clindamycin and the Invanz. Within 3-4 days I was walking normal again, I could drive and even remember what my name is!!!

While being at the clinic, I had my first two IV injections of Ceftriaxone in the lab. The lab is awesome! There are super comfy leather rocker/recliners to sit in while getting your infusion which can take an hour to hours. I was there from 12:30 p.m. until 5:00 p.m. so I got to meet other girls that have been battling lyme disease as well. It's never nice to say that you are glad they have lyme disease as well but its nice to hear their stories and know that I'm not the only one battling this disease. These girls were very nice and very open with what they have been going through. I feel bad for them, most of them live by themselves, they sleep all day, which I do that most days as well...lol. But they don't really have anyone to help them make meals or even given a reason to get out of bed everyday. I am very greatful that I have family and especially my kids which gives me the biggest reason to get out of bed. I am doing much better which means I am walking without aid, I can speak clearly and my mind is clear and working the majority of the time. I still battle a lot with fatigue and pain, those are probably my biggest symptoms that are still not under control. The scary symptoms that pop up whenever they feel like it are shakiness, my legs stiffen up and go numb, my eyes glaze over and my mind feels blank. The only things that will resolve some of these symptoms are bumping up some of my muscle relaxants in order to get the shakiness under control, sleep and massage also work very well for these symptoms. With my eyes and my mind, lots of sleep and time are the only things that seem to work.

Things I've been doing is taking care of my flowers outside. I have quite the flower garden this year, thank-you to my mom who has helped me with picking them out and planting them. I have never had any flowers planted in my yard to take care of so it is a learning process but I love watering and taking care of them. They are all still alive!!!

I am also very proud of my little guy Zachary who has started Kindergarten this year. Ethan and I walk him to school and walk back to pick him up. It's not a long walk but it's definitely long enough for me. I am so happy that I'm still out of my wheelchair and I am able to walk him to school. It's a big accomplishment and an uplifting feeling that I can actually walk Zachary to school. For the past 2 years I haven't even been able to get off the couch to walk from our house to the school bus which parks at the end of our driveway. There are parent events such as meet the teachers and get a tour of the school. The next night the school is having a family movie night so I'm looking forward to that and also being able to meet other parents. I haven't been able to meet many people around here because I spend 95% of my time laying on the couch.There are a few girls with kids in Zachary's class so I am slowly meeting new people which is very exciting!

I'm really hoping things continue going in a positive direction. It's slow but at least I'm improving. Being able to participate in school meetings and swimming lessons has been something I've been looking forward to for a long time. With Zachary going to school every day for the mornings, it gives me time to spend quality time alone with Ethan. We get to color, work on writing his name, or reading a book. The point is, is that it's quality time with just Ethan and I.

Life is not fair to me!

Hello Everyone!

It's been another not so exciting couple of months. Since around the middle of February I've been having some unusual symptoms related to pregnancy. I had gained over 30 pounds in a matter of 6 weeks in which I haven't changed my diet, lifestyle etc. I was also experiencing galactorrhea which is the spontaneous flow of milk from my breasts. These symptoms are especially odd, because I've had a full hysterectomy so pregnancy is not possible.

I went to my gynecologist and he sent me for some blood tests. My prolactin level was above 200. A normal prolactin level is between 2-29ng/ml. Therefore mine was extremely high. I went to my regular doctor and he sent me for an MRI. The MRI showed that I have a micro prolactinoma which is a small tumor in my pituitary gland. I was then sent to an endocrinologist who put me on medication right away to shrink the tumor. I had also been on a nausea medication which is also used to help mother's whose milk has not come in. Bad news for me apparently. I stopped the nausea medication and my milk stopped and my prolactin level came down to within normal range so that was good news. The bad but good news is that I still have the tumor but it is small and it only needs to be watched at this point.

After getting over the fact that I have a small tumor in my brain I thought things would finally start to look up. On June 6 the day started out like any other day, we had some stores that we needed to go to, to pick some things up. We had stopped at home to grab some papers and I started to notice a small pain in my lower abdomen. I didn't think much of it so we continued on with our day. By the end of the day we ended up getting some groceries and by the time we left the store I could barely walk. The pain was getting much more intense. We quickly headed home so I could lay down. The pain was in my lower left abdomen and it was excruciating. The odd thing about where the pain was located was that it didn't make any sense. The ovary on my left side had been taken out about a year ago, I've had a hysterectomy so there isn't much there that could be causing the pain. I began to get so uncomfortable that Mom took the boys and myself up to the hospital. I had a CT Scan that showed I had a kidney stone that was in bottom of my ureter, and within a day or two it would pass into my bladder where the pain subsides. The bad news is that there is a second kidney stone still in my kidney which could stay there for days to years. The doctor had given me pain meds as well as Flomax which helps break up the kidney stone and pass it much quicker. It sure helped the first one come out but it also got the second one moving so I ended up in pain for about 1 week. I hope I never have to experience that kind of pain ever again.

Besides finding out that I have a small tumor and 2 kidney stones I am doing quite well. With being on my new medications I am starting to feel much more like myself. I can think much clearer, I have the energy to get up and get a drink if I need to and do the simplest daily routines that people take for granted every day such as having a shower, getting dressed and getting make-up and hair done. There are days when I can't work up the energy to have a shower without sleeping for the rest of the day because I'm too worn out. I am finally starting to be able to do all these things by myself. Most days I still need a nap in the afternoon or I won't make it until dinner time, but that is very minor compared to some of the things I need to do.

Keeping up the courage and positive thoughts are what helps get me through every day and knowing I have the support from my family and friends.

I have been put on a new IV medication called Invanz and stopping the IV Ceftriaxone. The Invanz costs $2200 every 30 days plus I have two other IV medications, antibiotics, herbal remedies, the cost of having to travel to see my Lyme Doctor in Redwood City, California and the cost of all my supplies has made it a real challenge to come up with the money to keep my treatment going. I am looking for any kind of donation to help me pay for my medications and supplies. My insurance has cut me off of all medications because I have Lyme Disease. They state that my medication regime is experimental and therefore they have denied my coverage. I also have a vegetation on one of my heart valves; the mitral valve. I am seeing a new Cardiologist in hopes that he will give me a diagnosis of "Bacterial Endocarditis", which is technically what I have growing on my valve. If he does, I'm really hoping that my insurance will cover my medications, but that is a big if! Many of the medications used to treat Lyme Disease are the same to treat Bacterial Endocarditis in that they are both bacterial infections that are extremely hard to get rid of. I have been cut off of insurance since October of 2011. I have a donate button on the top right side of my entry that is linked to my paypal account. If anyone is able to help out, it would be greatly appreciated.

Thank-you so much for everyone's positive thoughts and encouragement. It truly does help keep me focused on the better days that are ahead. Some days are really tough and you feel like giving up but knowing that I have lots of family and many friends standing beside me gives me much needed strength.

It Has Been a Rough Couple of Months!

I haven't wrote in here for awhile, I've been very sick the last couple of months. Starting back in March, I had a couple of problems. I started to walk around the house without any aide. I was so excited that things were finally taking a turn for the better. I have been walking around the house but when leaving the house I am still using my wheelchair but it's progress!

On March 30, 2012 I was taken to the hospital early that morning. Two days before the 30th I had been feeling very ill. I started throwing up constantly and couldn't keep water down and therefore I couldn't take any of my medications. Two days of not taking medications put me into with drawl. I began shaking, I was having cold and hot sweats, I was having seizures again, I was incredibly dehydrated and could barely move. I was put into the truck and taken to the hospital. Upon entering the hospital I had a seizure and was shaking uncontrollably, I barely knew what was going on. The nurses took me right into a room and I was hooked up to the heart monitor because of my Mitral Valve vegetation, I had an IV in my arm because my port was not drawing blood and therefore unusable until it would draw blood again. The infusion nurse flushed it with CathFlo and my port was again usuable by the time I left the emergency room. The nurse put 4 bags of saline in me to re-hydrate my body. My heart was racing and my blood pressure was extremely high. I was having a hard time slowing my breathing down, I was gasping for air. After hours of being in emergency I was finally admitted to a room. My shaking and nausea were finally under control and I was conscious of everything going on again. I was so weak I was having a hard time getting up walking again. I spent 3 days eating nothing but popsicles and by the 3rd day I was eating broth so I was able to go home again. I have never felt that sick in all my life. We figured out that it was the oral Rifampin that made me so incredibly ill.

I spoke to Dr.Harris' office and Dr.Meisha Grieder changed some of my medications. The first was from oral Rifampin to Rifampin IV. This medication is used for the treatment of bacteria as well but can also be used for the treatment of Tuberculosis. As you can see in my picture the Rifampin is red which in turn causes red urine and you sweat red. It's a little different to get used to. I'm not sure how long I have to be on the Rifampin, I will find out at my doctor's appointment in Redwood City May 31, 2012. I was switched from Zofran to Reglan for nausea. I'm feeling much better but being so sick for those few days has really taken a toll on my body. I am very fatigued and weak. Another change is Ceftin which is used to treat infections caused by bacteria to Omneceft. I began getting headaches whenever I was on the Ceftin. My headaches went away by taking the Omneceft. As for the IV Ceftriaxone I am still doing 4gm/day - 4 days a week.

After getting out of the hospital I started to gain strength again and began walking. After a couple of weeks my left foot began to swell mostly in the heel and ankle area. A few days later most of my foot was swollen, and up my shin was swollen as well. I went in to the doctor and was told to do an ultrasound on my leg and foot area to see if it was a blood clot that was causing all the swelling. It's highly possible to get blood clots when you don't move your legs a lot and even just having a port can cause blood clots. Well the result....no blood clot. Next came an x-ray which showed I could have Plantar Fasciitis which is inflammation of the foot tissue that is felt as heel pain. I then was referred to a Podiatrist which did more x-rays and found that I have Osteopenia which is a condition of bone in which decreased calcification, decreased density and reduced mass occurs. The result is 3 fractures in my left heel; not so great news. I was fitted for a walking boot but to stay in my wheelchair and not walk on it at all. It's better than having a cast I guess. After a few days went by my right foot began to do the same thing, I now have fractures in that foot as well so I now have walking boots on both feet. They are very painful from the tip of my toes to my heels. Hopefully in 6 weeks I will return to the doctor, have an x-ray on both feet to show they are healed and then I can start physio-therapy! Looking forward to walking and having a healthier summer!

I have been feeling much better since all of this. I am still walking around the house but I'm using my wheelchair for places outside the house. My legs are not strong enough to be able to walk around department stores yet and with the fractures in both feet still healing I've been advised not to walk or stand for long periods of time. I'm starting to walk again so things are finally looking up!

A Better Day!

I had my arm port put in Friday January 27, 2012 and wow it has been quite sore but is now finally recovering and the bruising is lessening. As of Monday February 6, I started my IV Rocephin which went very well. I had an injection of IV Rocephin at my appointment at Dr.Harris' office and by the time Trevor and I got into the vehicle I had a seizure so I was pretty scared to start the IV, but it went really well so I'm a happy girl and hoping that things are going to continue to get better. It's about staying positive and living life to the fullest while I can and hoping that one day I will be rid of this horrific disease. Writing this blog and showing everyone my writing and videos will hopefully help get others get diagnosed and treated with this disease much quicker than I did. It is finally being much more recognized by the medical fields but not recognized enough. I have helped many people get diagnosed and find doctors. Unfortunately the doctors who will treat this disease are all below the Canadian border. It is worth it to travel and find a doctor because I wouldn't wish this disease on anyone. It is awful, it makes you incredibly sick, breaks up families, drains you and everyone you know of any money they have. It's really sad.

The last day or two I have been feeling incredibly better. I have all of a sudden been able to take a few steps and now today I walked from my bedroom to the living room with a cane and then also using my walker. I know I sound like an old lady but having these gives me the opportunity to aide in my walking. I am so excited today because I have not used my brand new wheelchair that is pretty fancy and is even purple! But the real excitement comes in when being able to walk again. I'm hoping that starting more of my IV meds will not cause a herx reaction and take away my walking ability. I go pretty downhill in the emotional department when that happens. Cross my fingers and hope for the best.

I have a wonderful doctor now and I'm being tested for C.Difficile which it is highly likely that I do have this and if the test is positive then I have to go off all of my antibiotics and go on something to clear the C.Difficile up and then I can continue with my Lyme regime. We'll see what happens with that. Not a good thing, you can get it from taking so many antibiotics which of course I have for the past 3 1/2 years.

As of now I want to thank everyone for reading my blog and watching my video not to feel sorry for me but for you to recognize the signs and symptoms of Lyme disease and what you have to go through either to help yourself or recognize it in someone else. If caught early a couple months of Doxycycline will 90% cure you of the disease but in some cases the disease will continue. If anyone ever has any questions please email me at: charity.mcgill@gmail.com and I will be more than happy to chat with you.

Thank-you and God Bless

Hopefully Some Good News!!!

I recently saw my doctor, (Dr.Harris) from Redwood City in California. He is very blunt as to what he says and the way he wants to treat me, which is a very good thing. I'm used to telling the doctor what I need to be on. Dr. Harris is wanting me to contact a Neurologist in New Mexico and talk with her about my being incredibly shaky all the time. The Neurologist knows and works with many patients with Lyme Disease so getting another opinion to go along with Dr.Harris's regime, he thinks will be very beneficial. I am also contacting my Cardiologist to test me for Q-Fever which can give you vegetations on your mitral valve. It is worth it because no one can figure out what the vegetation on my valve is. I am very happy with what Dr.Harris said; he wants me to be on IV Primaxin, IV Zithromax and eventually add in IV Flagyl. These meds come to around $5000 per month which is an incredible amount. We just can't afford that, I am on a bunch of oral medications as well that add up to around $500 a month so we will have to figure out what we can afford and take that to the Doctor so he can figure out a regime for me that I can afford. I am very happy with Dr.Harris, and a very good friend whom also see's Dr.Harris has helped me in narrowing down doctor's that i should see.

I recently saw Dr.Harris on January 17, 2012. My symptoms include shakiness, loss of feeling and use of my legs, short memory problems, double vision, vertigo, headaches, and quite fatigued. Since starting my medications, these problems have quadrupled. I've been sleeping most of the day. I can't see properly so even switching oral medications has had an effect. My Doctor is very confident that I will be back up and about by hitting the Lyme Disease with many IV medications as well as oral medications and supplements.

Before seeing Dr.Harris I had been on some different oral antibiotics and they seem to be keeping my symptoms at bay which is very frustrating that I haven't seen any improvement in over a year while still seeing the Naturalpath here in Hillsboro which is about half hour from my house but quicker depending on the traffic.

I finally believe there is some hope of me walking and not having all the these symptoms. It is going to take at least 18 months of IV Antibiotics and if I've been good on these then I will move to oral antibiotics. Right now I will be getting Rocephin injections into my upper butt cheek once a day until I can get an arm port placed. An arm port will be much better than a chest central line or an arm picc line; these always have to have dressings changed on them where as the port is under your skin but has to be poked on every use. The good thing about the port is that you have no trouble swimming, showering or anything to do with getting wet! The port is also able to stay in your arm or chest for a much longer period such as over a year compared with the picc line the starts to break down around 1 year.

I had my picc in removed about 1 month ago and have stopped IV antibiotics about 2 1/2 months ago. We were trying to maintain my line until we saw Dr.Harris because we pretty much knew he was going to put me on some kind of IV Antibiotics. My mom actually removed the picc line, it is very simple to remove it. Make a sterile space, clean around the line really well an pull the line out very slowly until it comes out and then put pressure on the whole so it doesn't bleed too much and apply a bandage. Easier than going into Emergency and spending the day there and having someone do exactly the same thing.

One good thing that has come out of being sick is that I met a very kind and genuine girlfriend from the San Francisco area. Trev and I meet up with her for lunch or dinner whenever we go down there, she is truly a great person that is also battling Lyme Disease.

I am hoping that this is going to be the year that I will recover greatly. I know there will be times when I'm going to be incredibly sick but there will come a time after the herx reaction that I will finally start to feel better and hopefully start walking again. The biggest part of getting through this disease is having so many family and friends around. I can't thank all of you enough.

I better head to bed, I can barely see what I'm writing anymore.

Good Night!