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.

Handicap Accessible

For me, a relapse comes as a form of aftermath. Sometimes it lasts days, sometimes a week or more, but it always happens after a big event or sequence of events that take me pushing through multitudes of stress and fake smiles until I collapse. Usually I don't feel it until I get home and start to relax and wind down and then my body crumbles into a heap of crippling pain. The neurological symptoms of this disease are life altering and disabling. My legs crumble and shake with fatigue, and I lose track of how to lift one leg up enough to step forward. Usually I end up just falling forward as my knees buckle and bend beneath me. Sometimes it is first thing in the morning before I even know that I can't walk, and usually I end up hitting my shoulder, head, or side on some object, be it furniture or a book on the floor. After navigating the house many times, weaving through laundry baskets and doorways to reach my destination, I have gotten pretty good at maneuvering a wheelchair from point to point. Some sufferers, especially those with Picc lines, have a harder time moving around than others. The stores I have been in have had very inadequate handicap facilities and I'm determined to go on a crusade and raise the awareness of it. A store owner should be able to maneuver through his entire store, bathrooms, doors, even work room where employees are, in order to call it accessible. I've seen bathrooms that my mom cannot get into easily, forget a wheelchair and a second person. It's messy and difficult and a challenge. This reminds me that I'm not normal, no where near it, but I'm okay with it because one day I will make it so other's can at least feel closer to being normal.  It's hard to be in a wheelchair, and harder to feel so dependent on the spaces around you. You find yourself saying 'Well I can't stop to eat there or there because I can't get into their bathrooms', which is a sad thing. People should not govern their decision because of the accessibility in an 'accessible' place. If it's not friendly to the handicap, then it shouldn't be friendly for the well. For this reason I am going to start a blog website for handicap accessibility. I'm going to post pictures and descriptions of all the many places labelled accessible and how amazingly difficult they are to navigate. I hope to get a lot of support on this because one day I would love to take it to the legal level and pursue laws and restructuring of the 'accessibility' definition! I'll post more when I do find the patience to pursue that path.

Link to Youtube

Here is an easier way to view all my youtube videos from last summer to now. Click the link, or copy and paste into your URL bar, and view all the videos instead of just the four previewed videos at the top of the blog.
http://www.youtube.com/playlist?list=PLF64C13DFAD339559

20/20 Interviews Wrapped Up

For the past two days I had a national team on my property and in my life to get to know me. They saw my room and watched as I took medicines, wrapped my IV up, prepared for a shower, wrote a new blog entry, visited my miniature horse, ate ice cream, and performed regular activities. Nothing about the experience was regular however. It was surreal having strangers going to and from and putting a microphone on you and following you around. I'm used to just doing my thing pretty quietly but there was nothing quiet about the new visitors. We spent today doing interviews in my grandmothers kitchen 20 minutes away. Jay Schadler and I sat on the couch and talked for close to two hours, three quarters of that being intellectual interview questions. I had the speech problems all day but pressed on to do all that talking and hung in there while my mom and boyfriend were also interviewed. As quickly as they had swarmed in, they packed up and hit the road to track down my Lyme doctor and get an interview with him. Now that they have all the film they need, it is up to the editors to portray it correctly with the information and support we need in the Lyme Disease community. I'm in sweet celebration now for all the stress of it to be over and be able to sit back and watch the rest of the process take place. Maybe this will travel to other interviews in the future, or maybe not. As long as people can get a better perspective on the hell that is considered my life, that is all that matters.

 Interview time!

 Me Getting a Mic on.

Interview camera angle.

Prom 2012

I woke up Saturday morning I had a few hours to myself to think. I imagined myself dancing under a big moon with twinkly lights reflecting off of my dress and a princess tiara on top of my head. I pictured a man in front of me, so in love with the real me, the sick me, the hurting me, yet the beautiful me. The smile on his face would reflect in my sparkling eyes, and all of the pain and illness and disappointing and arguments from the past four and a half years would melt away to leave me in a state of peace even if only for a minute. That was how I wanted my second prom night to go. I did not want to worry about a medical diet and what food I could or couldn't eat, or who was wondering where I had been the past year. Most of all I did not want the worry of passing out or being carried home in a heap from Neurological Lyme symptoms. I spent yesterday getting ready slowly. I dabbed some polish on my toe nails that had not held up great from previously painting them, I put my makeup on in pieces, my mom rolled my hair and I sat looking at the beautiful flowers on the corsage for a whole hour or so. My date listened to me chatter about all the things I wanted in life and we planned on meeting my grandparents for beautiful pictures. The sun was out on the grass and a slight breeze kept it balmy and warm for the portraits. I tried to keep telling myself I was pushing through the crushing pain in my legs and torso for a good cause. That all the struggle was worth it. When we arrived to the school I almost passed out in the line for the prom march and had to sit down on a fold out stool my mom just so happened to have in the back of her vehicle. How embarrassing to see people walk by and stare you down, wondering why you think you are so special and can sit while they have to stand patiently in line with 300 other kids. I was upset and discouraged and hurting and sick. After the march I sat on a bench in the hallway trying not to cry. I felt out of place and judged and unwanted by my schoolmates that just did not get it. There was no table for me, yet again an outcast, and I was moved to a table by the teachers. The music was loud and pounded in my ears and flashing lights killed my eyes even covered with sun glasses. We decided to at least get our money worth of food before heading out and I suffered through the nausea for a plateful. Towards the end of our meal, the song 'Just a kiss' came on the loud speakers and I saw in Mike's eyes exactly what I was picturing earlier that day. I pushed my chair back and stood up, bringing him with me and we were the first to dance in front of everyone with that sparkle in our eyes, as our song reassured me all was well. In that two minutes of peace and happiness, nothing was wrong. The pain got bored and took a vacation, or I just ignored it, either way everything melted away to the sound of a few people clapping and cameras snapping. But I didn't care, I was living. Living for a few minutes more than I had in years. Loving so much my heart felt like it would break in two, and I was okay with that. I got home and did my IV after leaving early from the dance. Telling my mom about my many compliments I had received, I squeezed Mike's hand and was amazed that he would put up with someone like myself when there is so many other girls in the world. Then I remembered, I wasn't just any girl, I was Elaina. His prom date and his girlfriend and his best friend, that was what mattered most. I believe I accomplished fooling everyone into thinking I was healthy, for the most part. If you look okay, than at least you are doing one thing right.

May is Here! Back on Medications

After three Hyperbaric Oxygen Treatments through April, I discovered no improvement and actually felt worse after each session. The oxygen must have pushed the Lyme out of my tissues enough that it caused weekly depression spells that were debilitating. I decided that was not what I needed right now being in such rough shape. On the fourth week of my medicine vacation I found myself brought back down hill and almost into the wheelchair again. Memories of last summer's struggles filled the late Saturday night air, as I suffered from head and neck spasms, neurological upset, and speech problems. I took what medicines were on hand to calm the sudden episode from a day filled with activity that my body was not yet prepared to handle, and stayed in bed for the next two days. After the rest and much practiced handling of my symptoms, I was up again in no time preparing for an Air Force ROTC Ball. Yet again, the following Saturday night after the days events and the ball, I found myself downhill from exhaustion and suffering autistic-like symptoms and the speech problems all over again. A day later with some rest and I'm now again getting ready for prom. This is my Junior prom, my second year going and I am far more nervous than last year. Exactly a year ago I was carried home in a trembling mess with the most unexpected Lyme Disease symptoms. That gives me enough grounds to remember that frightening experience and move forward on a prayer for a better one this time. The Picc line has been in 11 months, and I am now being put on Clindamycin Phosphate for the persistent symptoms that were not touched by the Rocephin like we had hoped (along with Omnicef which I have tried once before and Zithromax for Bartonella Symptoms). Within the first six hours of my first treatment on the new medicine, I suddenly experienced a raging Herx reaction (A Herx is a positive response to medication that seems negative, better explained in my earlier post called the Herxheimer Reaction. It basically means the medicine is killing off the bacteria). It lasted for at least 48 hours and left me feeling dizzy, weak, restless, irritable, in a general state of intense pain, and nauseas. After that cleared it took me all my energy just to manage a shower and keep breathing. Since then, I have started with what we believe could be Gall Bladder problems. I had such great pain in the event of an 'attack' on Tuesday evening, I literally could not breathe and was scared for my life due to the pain. Whats worse then such a turn of events is the shock of being scared to enter the Emergency Room knowing that you will not leave with answers because you are such a unique case. That's the shocking encounter I deal with every trip to the hospital, and I have said many times that 'I would rather die in my comfy bed with my family and pets than at a hospital that doesn't know what to do with me'.

Recovery from Concussion

It has been over two months since my unfortunate concussion occurred while trying to enjoy some fresh powder on the ski slopes. Sitting here today, I don't even know what to type to explain to my followers and even strangers how the recovery process has been going. In simple terms my brain is gone. We thought it would take two or three months for me to be 100% but with average Lyme Disease neurological symptoms irritated, it's going to take a lot longer. I attended five weeks of a concussion rehabilitation center to strengthen my balance, eye sight, and reaction time again. Needless to say the concussion cleared up quite a bit with that and the help of solid rest, but the Lyme didn't. My symptoms of fatigue, joint pain, swelling, muscle twitching, light sensitivity, sound sensitivity, depression, anxiety, huge mood swings, brain fog, memory loss, and lack of concentration and motivation have increased significantly. I took what is called an Impact test for athletes that gauges reaction time and processing speed and failed miserably. Some mornings I awake in such a state of pain I can't move from mid-torso down. It takes me multiple hours to wake up in the morning and be able to put on a smile or get dressed. Showering has become a worsened chore as I'm still dizzy and just so weak and miserable. Can you imagine not even being able to get yourself clean because you would have to choose between clean clothes or a clean body, showering or getting dressed, getting dressed or leaving the house for a doctor's appointment in your pj's? Most people inflicted with Chronic Lyme can relate, but others have no idea of that thought process and how discouraging it is. I can't do any schoolwork because my brain is not clear enough and that makes it impossible to graduate on time, so a high honor student now has to take an extra year to complete high school's basic courses. This whole disease is such a burden, such a humbling experience.

Update, February 2012

I've been doing very well lately. Civil Air Patrol is progressing nicely, I work 4 days a week at the ski resort, two days inside two days outside, I have completed two classes since my worsened illness back in May and I'm catching up. Up until work I was doing very well. Now my elbows have developed extreme problems and I am suffering with what I believe is tendinitis that runs from my elbows to my wrists. My left knee has started hurting me again, probably from the walking and me starting running within the past two weeks. I have had a passing out spell and lots of dizzy, light-headed feelings. My head has hurt me occasionally, my knuckles are swollen, and my endometriosis symptoms have not been easy. My GYN did say she thought it was endometriosis too, which makes it a long-term problem. Aside from that I am completing my Spanish class and biology class currently and have 12 credits to make up. That's a lot of schoolwork. My trials have been great, but I have yet another supportive man in my life because God has favored me. I am happy even though overall I'm suffering physically. I will get better, and I'm trying to keep my head up. Deep breath, time to take on the world.

Probiotic Protection

It is really important as a Lyme person or anyone else have stomach changes or irregular pain to know that Probiotics make a big difference. Every brand, every type, every dose can be different. I took a Probiotic called PB8 that was 8 billion units and still I needed to take 3 or 4 every night at least an hour away from antibiotics. We switched that brand to another one of a higher unit from Puritan's Pride and they did not work for me.

I started having symptoms of Candida Overgrowth AKA Internal Yeast Infection. It was a mess. This was back in April. More recently I have been taking a refrigerated 85 billion unit one called Raw Probiotic. This has helped my stomach tremendously, especially since I have irregular bowel movements thanks to the IV antibiotics, which are tough on the stomach. My pain level in my stomach has minimized and I have reduced nausea most of the time.

I went for a week where I hadn't taken Probiotics because I was out of them and they needed to be ordered (expensive little boogers). My stomach got so mad and the pain was incredible. Lets just say the pain was unique and there was so much nausea and vomiting, even more burping.

I now have been told to take more then one type of Probiotic and switch it up to keep the body's resistance down and keep the stomach healthy. I take both RawProbiotics and PB8 back and forth and at the same time. Probiotics definitely protect and its important to invest in them and keep on top of them.  If you forget them, then forget your stomach ever being normal again.

Trying a New Oral Contraceptive

The last birth control I was on was for the ovarian cysts. This time around we are trying a contraceptive called Seasonique which stops the cycle and would treat the symptoms and pain of endometriosis. Hopefully this will work better than the last one. My ultrasounds have all been clear and not found any evidence of cysts since the initial cyst and surgery. We just are at the last rope and thinking maybe some endometrio cells escaped from the surgery or maybe the Lyme has caused my womanly parts to form endometriosis from all the inflammation and cysts. Therefor I would have pain all the time like I do, and some cysts like I have had, and a contraceptive that stops the cycle for 3 months should help. Now its just a waiting game to see if it works.

Prom!

I've waited for Prom all my life, It was something where dressing up was acceptable, pushing formal over the edge was preferred, and everyone looked equally beautiful. I had never been to a prom but this year was a dream! I was invited to another school's prom by my boyfriend, a 6'2" Senior football player and track star from a few towns over. I love him, because he looks into my eyes and knows how bad I'm hurting but how much I'm pushing through. We had been planning prom for a few months, and now it was here. After the big High School Assembly I ran I got home and started preparing. I soaked my feet in Epsom salt and did my toenails though I started to feel really sick. Then I showered and dried my hair for the next morning and went to bed anxious.

I got up early, got my hair done for two hours and my makeup. I knew I felt terrible, but I must keep swimming. We stopped by the Lyme walk to take some quick pics and then moved onto heading home because the rain was picking up. The rain was a sad thing. I wanted beautiful pictures! I started praying hard, trying not to cry. I just wanted a perfect prom day! By the time I got sewn into my dress and was already and heading to the photo op the sun peaked out of the clouds and we had gorgeous picture weather. 45 minutes with Tyler's brother and my mother taking many different gorgeous pictures of us. Then off to prom which was a great evening. Afterwards was an after prom party that I had planned to attend, so i changed from my dress, feeling increasingly worse. When we got to the movie theater where the Chemical free prom party was being held, I had to call my mom because I was ready to blow. I was so nauseas and began to shiver. When I got in the car the shivers turned, and started a whole different set of issues. Prom was well worth it though.

Candida Overgrowth, Intestinal Yeast

Over the past few weeks I've suffered with severe stomach pain. The emergency room proved uneventful and we just found some small ovarian cysts but nothing to really explain my pain in full. Through talking with a friend and research I started looking into intestinal yeast overgrowth or infection. Its more likely to occur from too much good bacteria dying off due to antibiotics or birth control. I've been on antibiotics for 2 1/2 years and always have stomach issues. Candida can cause stomach pain, indigestion, nausea, acid reflux, headaches, fatigue, dandruff, thrush of the tongue, sore throats and nasal swelling, sleep issues, and ovarian cysts or dysfunctions. Wow, doesn't that cover a lot. :P I thought this made sense, so I looked into it further and my mother and I found a spit test that you do first thing in the AM, which was a great signifier for me, and even a symptoms point based test where I blew positive out of the park. Treatment is lots of magnesium calcium, which i tripled my herbal amounts and added garlic, and started magnesium drinks, also high amounts of pro biotics like yogurt, refrigerated pro biotic drinks, pills before bed, and on top of everything a diet restricting the amount of yeast and sugars, even natural fruity sugars, from diet. The diet is tough, no dairy, light amounts of nuts, reduced yeast, and very small amounts of fruit. Allowed: meat, and vegetables like salad and beans, small amounts of nuts, olive oil, and malto dextrins that are in sugar free flavorings. Whew, this is going to be a fun next few months trying to get my body back on track. google this if you think you may have a Candida issue, its dangerous and quite important to discover for yourself.

Coccyx or Tail Bone Problems

Last year in January I was exempt from horseback riding due to tail bone pain that we called pilonidal cysts. The cysts and glands were all surgically cleaned out and removed and i dealt with additional hyper trophic scarring issues. Basically the skin scarred irregularly, probably from the Lyme, and was raised and painful, pulling at the tissue around it. I proceeded to seek Cranial Sacrael Therapy which massaged the tissues to soften them up, and keep a silicone 'scar away' scar patch, kind of like a band aid, on the scar which led to it ultimately softening up. By the end of summer I was still suffering from deep tail bone pain that was located at the tip of the tail bone, or the coccyx. I tried to work through it to horseback ride, but it wouldn't work. It was far too painful and I found myself consciously leaning to one side or the other when I would sit to avoid or reduce pain. I attempted to snowboard this past January, and after a few falls on the hard snow, right on my tail bone of course, I changed back to skis and gave up. After the snow boarding I had such bad pain from sitting or moving around that I returned to the surgeon. She said I could have broke or bruised the bone and sent me to an orthopedic specialist to get it looked at. We took ex rays and conclusive bone CAT scan which proved no visible break. He was not willing to do a Coccygectomy or surgery to remove the coccyx bone because he claimed it was unnecessary and would cause additional issues. I am still suffering with pain, which my Lyme Doctor claims is just Lyme Inflammation. So After my most recent Lyme Doctor Appt I picked up some Capsaicin .1% Arthritis cream made of menthol and chili peppers to try a new idea. basically i'm applying the cream twice a day to my tail bone area, and the extreme burning sensation is supposed to exhaust the nerves after a few days and reduce the pain. I have to apply it four times a day, suffer from severe burning, and wait for possible relief. It has proven to work before, but will it work for me? We will have to see. it's very uncomfortable, and painful, but not unbearable to return to horseback riding (if it works). I may be skeptical but it seems like a worthy idea, and I'm willing to try anything while i wait for my Appt. with a pain specialist.

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!'

Protocols

For me, I believe it is more than just the antibiotics to treat an illness like this. More than the herbs, the vitamins, anything. But for now let me talk a little about the medicines I have tried so far.

To start with, my LLMD recommended I start on herbal treatments before I even got the test results back. Here is a list of the herbs that were meant to fight the Lyme and co-infections over the past 1/2 year: Andrographis, Artemesia, and Cat's Claw. All of these and dosages can be found in the Healing Lyme book I recommend for reading. The necessary herbs were Milk Thistle for liver function, Probiotics for multiple reasons, a daily Vitamin, Vitamin B-complex, Magnesium, Vitamin D, Co Q-10, Fish Oil (Omega 3), and for sleep Valerian Root and time release Melatonin work the best. in total right now I take about 38 pills a day, and it is really tough on my stomach so I drink Aloe Vera Juice to coat the Upper GI track (throat and stomach).

In the beginning when the results were finally back as positive and it was time to treat, the LLMD put me on the above 'cocktail' of herbs and Biaxin. When that proved very little effective we switched onto Biaxin and Bactrim. Neither quite helped so after time we switched both of those to high doses of Amoxicillin. That was ineffective as well. Now I am on high doses of the above herbs and aiming for a herx, anything to show that the medicines are working. If you would like to look into any treatment like I have done, just remember that the side effects may differ. I have been effected minor and also have had increasing fatigue from time to time. it is said that Lyme makes cycles and gets worse for an allotted amount of time every 3/4 weeks.


Elaina