Update: Side effects of Levaquin

At my last appointment with my Lyme specialist about a week ago I was put on Levaquin, Zithromax, Omnicef and Coartem. This is a regimen that last year at this time when I was doing really well I was on, along with IV Rocephin that I had already been on for months. The problem is that last year before my concussion I dealt with some really painful Tendonitis in my elbows while working. This year, after just five days on Levaquin, I can feel it in my wrists and traveling up my arms. Its incredibly painful, to the point its hard to type and drive, and the side effects do list that as a concern. The doc switched me to a different medicine in place of that but I will probably be dealing with the lasting effects of the Tendonitis for a week or more. I still have to work, but I did end up taking a few days from work off so that I don't have to do four days in a row with extremely painful wrists. Now I just wait to see if it helps at all. In the meantime I just keep chugging, and trying to keep my head above water with all the current symptoms I'm facing. I do have a loving friend base to get me through this time and for that I am forever grateful. The New Year will hopefully bring new health and new hope and new love, and I am excited to turn 18, feel better, kick this Lyme and start a new life path to forever.

This is a picture that was taken of me a few years ago when I was feeling well.

ILADS Conference and Finally Coinfection treatment that works!

One of my newer med.s I have been started on is Coartem, a prescription Artemesia product which you take 3 days out of the month to fight Bartonella. My Bart symptoms are noticeably worsened including air hunger, swollen feet, fatigue, and more after taking the Coartem for about a week. I am close to taking my third monthly round of Coartem and prepared to start detoxing the dead bugs intensely. Another new medicine that I was started on was Tindamax. When my LLMD (Lyme Literate Medical Doctor) went to the International Lyme and Associated Disease conference in Canada he learned a lot about pulsing the Tindamax to treat Babesia much like The IV Rocephin for Lyme. You take high doses 3 days a week and detox the other 4 days giving the bugs a hit and run chance. The minute they run they get hit again and after much cleaning and detoxing we can eliminate the bugs and their harmful toxins from the body. Aside from Tindamax he doubled my Rifampin which is a huge hit to the body and turns urine a deep orange color, and I actually believe that after all these things were added and increased I've started either having Gall Bladder or Spleen pain that's not pinpoint able.

A Plus side to the conference is my Vermont LLMD Spoke and showed one of my videos from an episode I had with prominent speech issues and tremors. So without knowing it, I'm famous :) Thousands of doctors got to learn from the mistakes of 10 illiterate ones.

Picc Line

I have been waiting for IV Rocephin for a long time, with that gut feeling that it would be the magical treatment. My Lyme literate doctor in the state finally started the Picc process and the Lyme Specialist in Vermont sped everything up.

Last Saturday I had my horse show, which was great until I got so tired that I don't even remember the end of the show, going home, or the whole battle with my eyes rolling back in my head and yet again being unable to talk or breath.

Monday I showed up at 9am at Concord Hospital for my Picc Line procedure. It started by wheeling me into the room (I couldn't walk again), changing into a johnny and preparing for the procedure. The whole procedure went like this: Sterilize ten times over, numbing shot which stung quite a bit and didn't even seem to work, going into a vein and stretching it out to find out that one wasn't going to work, going in for a second time and stretching it out which was the worst part of the whole procedure and I was lucky enough to get it twice in one arm, getting it in but it being coiled and not going down towards the heart, first exray: not in far enough, second exray: in too far, pull out 3 cm, third exray: PERFECT! Well it took long enough. 3 Hours and a sore jaw later I relaxed my tight muscles to feel the swelling and aching pain in my arm. I went straight home to put a heat pack on it and take ibuprofen and Tylenol which worked great. Then I was off to the Occupational Therapist who informed me I couldn't be treated until we had clearance from my doctor. The rest of the day I spent thinking about the painful procedure. It did not go as planned or expected and I would hate for someone else to not be aware that the 'little pinch' most people describe might not be the glorious silver lining you receive. What a tiring procedure.

I will receive 2 gm of IV Rocephin for about 30 minutes twice a day, for four days a week. This means every 12 hours (8 am and 8 pm) my mom will alcohol swab, flush with saline, swab again, attach antibiotics, swab again, flush again, and then we are done. Also once a week I will have to get blood drawn and have a nurse change the dressing to keep it clean and dry. That will probably be the one day I wrap it with saran wrap and tape to take a very delicate shower.

So hopefully this works, because if not this is quite the process and struggle. Off to try to upload videos on my you tube account from the horse show and my experiences with the tremors. Hope all other Lymies are getting well and resting up.

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!'