Powerhouse!

Just wanted to share a post on how an unhealthy person can be a powerhouse when allowed even an inch of freedom from an illness. I completed nearly 6 weeks of schoolwork with an A at the end of the day in just 2 days! How AMAZING is that? Biology has been a course hanging over my head for an entire year of foggy brain days. I finally am beating it! I am winning this one, and I start a Physical Education course on Friday which should get me through another mandatory credit! My tutor is finally coming to keep me on track and we did a lab today and extracted DNA from peas and spinach. Such fun! Then I got to make a brochure on Babesia as a parasite which made me happy. I may have discovered the cause of my increasingly worsening symptoms over the past few weeks. My doctor's nurse called today (the LLMD) and took me off of all my antibiotics that I take orally because my liver test I do weekly to keep him up to date on it's function was extremely abnormal and concerning. We are going to retest in a week and possibly do another ultrasound on the liver if this medicine break doesn't fix the problem. It is a little concerning that I am having liver problems yet proceeding with life full force. My last horse show of this season is in two days, so I have to push through at least for that. Tomorrow I see another dermatologist to discuss the Hyperhidrosis on the back of my left hand and see what he might could do about it. Then I have a long day clipping my horse (shaving and cleaning) for the upcoming show and there will be no time to rest until the evening.

Post Surgery Recovery, Lyme Symptoms After Clindamycin

The count up is in full swing. Today is 12 days post surgery, and this post will be a full blown analysis of my symptoms. Too many people have asked how the surgery has affected my Lyme symptoms and vice versa, and I'd like to quench everyone's thirst for more answers. Surgery is a traumatic experience for the body, nervous system and immune system. There's many characteristics of me being someone with auto immune dysfunction that affect my recovery. First of all, I'm on an IV medication that's trying to treat my symptoms of fatigue, depression, anxiety, joint pain, muscle spasms and weakness, headaches, hot and cold flashes/sweats, insomnia, light and sound sensitivity, and so much more. Charting my progression of those symptoms is more difficult over the course of my first month of this treatment when you are adding digestion irritation from pain killers, fatigue from the narcotics and trauma induced with surgery, and of course worsened headaches from stomach pain, fatigue, narcotics, etc. It's a snowball effect caused by the initial problem, the tick borne illnesses! My gall bladder probably worked fine before Lyme and Bartonella's treatment of Rocephin through IV clogged it up. I may have never needed surgery to remove it if I hadn't introduced Rocephin due to the Lyme. What a cycle.

Another thing to keep in mind is that I have experienced prolonged adhesive sensitivity since the IV treatment. I could have had it sooner and just not noticed until my skin was red and itchy from the IV dressing. I have since used an IV 3000 dressing to reduce the allergy and been fine in the Picc Line area. However, the band aids and dressings for the stomach incisions caused worse pain and irritation than the incision itself did. What a mess! Below is a picture of the four incisions, three of them surrounded by bright red almost welted skin where the adhesive touched. As of today I decided to not use any band aids to reduce those problems. In a week I'll get another picture of my stomach and how the scars are coming along.

On top of all that I have been found to scar hypertrophically, an uncommon way that the body can scar for some people where the skin over the scar is raised and red and firm unless manually softened with therapy and vitamin E based applications. Hyper trophic scars are not common for everyone, but are similar to scar tissue build up that can cause nerve pain and experienced by many Lyme patients whose immune system is affected. (http://en.wikipedia.org/wiki/Hypertrophic_scar)

Last but certainly not least is the risk after surgery of infection that can be fatal, thanks to the low immune system Lyme gives somebody. I was concerned about this but seeing as they glued my incision closed and I didn't get the dressing wet enough to change it every day, It lessened exposure to the air and I have been able to keep the stomach clean and dry. There is a little bruising near my belly button but it's looking good and smooth. As far as the Bartonella and Lyme symptoms go, I slept literally all day yesterday and caught up on much needed rest from the past two weeks of stress on my body. Today I am more energized and appreciating my sublingual b-12 in 5,000 mg tabs That significantly increase my general well feeling. I have rested, made sure to keep up with my medicines, and taken magnesium and b12 daily. Those are the only two natural supplements that I notice a difference with. I sleep better, wake up happier, have more energy, fight less depression, and feel lighter. On the Clindamycin, I have recognized a noticeably clearer ability to process, think, and concentrate. I am still working on the memory and motivation, but that will take time and rest. I have started reading more to wake my brain back up and we are looking into a tutor to generalize my needs and get my education back on track. We are also probably applying to disability since I can't work and do school and get better. I'm just not a super woman yet.

New Bigger Bed

Some of my posts have been delayed by the whole 20/20 experience along with the gall bladder problems all at once in the past few weeks. However I did want to follow up one of my earlier posts. I was looking for a bigger bed to fit my mom on it with me and give me more space to spend the long terrible sick days in. We found a beautiful mattress box spring and frame set from a college student for $300  a few weeks ago, and picked it up with the help of my boyfriend and his dad's truck. Then we ended up selling the adjustable bed and making back $200 to ease the financial burden. Now I've just been looking for 400-500 thread count sheets so I can really enjoy the experience of having a bigger bed and spending 3/4 of my time in it. When the news crew contacted me I had just finished setting up the bed and getting my room all clean and gorgeous. Today I just packed up some random cluttering items and my old sheets and bed skirt into a tub and slid it under my nice new storage space. The smile it brought to be able to put stuff under my bed made me want to post and update everyone on that situation. I get my surgery tomorrow Morning on my gall bladder at 7:30 AM and I will be able to recover in the nice big bed for the next few weeks.

Sudden Onset of Abdominal Pain

Two weeks ago, and I may or may not have posted about this, I was stricken with sudden upper abdominal pain. It grew to the point where I couldn't breathe and stretched the width of my rib cage right beneath my ribs. I have felt a lot of pain in life, with the surgeries and ovarian cysts and all, but I thought that was the worst pain you could possibly feel. My PCP didn't take it seriously as it had passed after about 3 hours and said it could just be an upset stomach. With great frustration I got an ultrasound the next morning and was told that if there was anything on it, we would get a call within 24 hours. A week and half later I assumed it was clear and all was fine. Then I tried to go to bed last night, like any regular night, and it started again. After 35 minutes of it getting worse and worse to the point I could not breathe but a small gasp and I was dizzied with pain worse than the last 'episode'. I finally gathered my pride and woke my mother to beg her to haul me to the ER. We tried to avoid it at all costs but there was no way I could survive any longer, the whole car ride filled with constant moaning and wreathing in pain. I told her to just shoot me and get it over with. Basically the doctor said the ultrasound read that there were gall stones. After doing blood work and a urine test, they sent me home with pain medicine, anti nausea pills, and a puke bucket, and told us to contact my PCP again. This morning I was not able to sleep after getting home at 6 AM, and instead spent the two hours vomiting my brains out in a pink tub on the floor. We rushed to the doctors office to be sent home yet again in no rush. Obviously these doctors have not had gall bladder problems, if this is even gall bladder. I get another ultrasound tomorrow morning and meet with a surgeon on Friday. Hopefully we can get some answers and figure it all out before the end of next week. My birthday is tomorrow and I will be spending it getting up early and being in pain at the hospital getting an ultrasound for the morning. Oh joy, the life of a Lymie.

Another Bump In The Road

When I was diagnosed with Lyme Disease I was having a discomfort on the left side of my stomach, right under my ribs. We put it off for so long, and there would be times it would get really bad too! Finally within the last few months we started looking into the gallbladder, which can cause pain and discomfort, and worsens after eating. The gall bladder creates another one of those chemicals to help digest food I guess, and the bile it creates is important, the only issue is it can have different issues like gall stones, and pain, and need to be removed. Not everyone needs their gall bladder removed, but we started considering IV Rocephin as my next treatment regimen and we wanted to make sure that we checked the gall bladder in full for any signs of problems before continuing down that path. We first did an ultrasound that checked the structure of all the organs and major things in the gut, including the Aorta Artery from the Heart, the whole digestive track, the Spleen, Kidneys, Ovaries, Gall Bladder, Pancreas, Liver, and so on. It came back clear, and we decided to do the next step which would check the function, instead of just the structure, of the Gall Bladder. This also after 5 weeks came back normal, and nothing was found. Then within two weeks I started going downhill. I had not even the slightest desire left in me to eat, I had no appetite, i was forcing a few bites a day if any food, and wasting lots of food, I just couldn't manage to eat even a bowl of soup! It would hurt if I did force down a lot, and I was extremely tired, and weak, and could not even horseback ride which is my passion! After 2 weeks and about 20 lb.s were lost, we started thinking Pancreatitis. The Pancreas creates enzymes to digest food and if its having problems can instead digest itself causing pain, lack of appetite, and fatigue, along with Diarrhea and dehydration. This could be serious, and the average treatment for something like that was multiple days in the hospital with IV nutrition to let your Pancreas rest. Then a few days after seeing the Doctor, and while we were waiting for the blood test for Pancreatitis to come back, i started having bad stomach pain, noticeably worsened when i ate, to the point where I would hunch over forward to help relieve it. I was nauseous, and not hungry, and tired, and in pain. I fought through but by Thursday evening was so bad I could barely breath, so I went to the ER. They did blood tests, urine tests, and a CAT scan (where you drink the contrast for 2 hours, and then get an IV and take the photos over the last hour), they even put in IV hydration for me and administered Morphine and nausea medicine. All the tests were negative for anything, and we had no clue what to do... I went home and rested, and then Friday my mom got in contact with the GI specialist to get her opinion. The GI doctor wanted me to start a medicine called Karafait that night, and take it 4 times a day over the weekend, and see if it helped any. other than that I was suppose to rest. Well i had a fever Friday evening, but still took the Karafait, and suffered through the night. Then by morning I felt a little better, still tired. By Sunday I was feeling wonderful! No pain, Nausea, nothing! it was virtually all gone! I was hungry, and thirsty and could eat without it bothering me! Like a miracle it was all better! the GI doctor explained Monday that the Karafait was probably coating a Gastric Ulcer and that's why it didn't hurt anymore. it would coat it and give me time to heal. This must be whats wrong. I have taken loads of tests we are still waiting back for, and I know I am going to be healing until the end of January at least, but I'm so glad we found what it was after two whole weeks of pain! This has been just another bump in the road in my treatment, and I will take it with ease and as Dory from Finding Nemo warns : 'Just keep swimming!'

GI Symptoms with Lyme Disease

One thing that ropes in with Lyme is multiple types and dimensions of GI ( gastro-intestinal) problems. There can be many sorts of pain in different areas throughout your entire GI track. I have experienced different symptoms of pain and problems for a very long time now, since I was 8 or 9, and all of it was worsened, we believe, by my Lyme infection. Since a very young age I had trouble with the fluid motion of my whole system, and keeping everything running smoothly. One thing we discovered after seeing the GI specialist was that I had acid reflux. Acid reflux is when the bodies esophagus muscles aren't strong enough to hold the stomach's acid where it belongs. This causes pain, 'heartburn', nausea, and irritation of the esophagus. I had mostly an issue with 'heartburn' and nausea, some vomiting at late night hours when I was lying in bed, and the acid was worse. I have taken multiple medicines to reduce the amount of stomach acid over the years, and have had to prop myself up at night. Since I got Lyme the GI track has been far more irritated, and I've had to have a special bed that mechanicaly inclines like a hospital bed, to encourage the acid to stay down (thank you gravity). I am most recently on Axid, which works more with encouraging the bodies natural ability to hold down acid and food with a small sphincter-like muscle at the top of the stomach, between stomach and esophagus. It does also reduce acid, called an acid inhibitor, or antacid. This is a prescription medicine.

I originally in April or May of 2008 wnet in for an endoscopy to see why the stomach was hurting so much worse since October 2007, when I got sick. They discovered multiple ulcers numbering up to 10. his was gtreated with antibiotics in case of H-pylori (bacteria can be in stomach, treated for it even though it was negative, I had it in the past in a stool test, and we treated it then too.) and other soothing medicines to heal the ulcers. Today, July 29 of 2009, over a year later I went back in for another endoscopy to see that the ulcers were gone, and the upper GI system is doing good. The axid is proved to be helping me.

I can't say that my stomach will stay well, as I am still on hard core treatments for Lyme and coinfections and don't plan to be well soon, but it is encouraging to know I am doing a little better in at least one area! :-)