My Body as Pandora's Box, New Cardio Symptoms

One thing I learned really quickly to appreciate about life is that it has never been something that has gotten boring for me. I have always been to a point where everything seems like a plateau that lasts only a short time, then a turn of events either ends me in a free fall toward earth or on a cloud somewhere embracing greatness. My most recent turn of events starting off the 2014 year were nothing fluffy and pretty and cloud like at all. It all started with my new gym routine. I noticed my first day of working out that my heart rate jumped up to 205 and all I was doing was a gentle incline at a walk on the treadmill. That level of bpm is not healthy, but I didn't know any different at first. I continued to return each day with my friend Rose, simply doing some stretches then a walk for about 15 minutes, and occasionally picking up an additional 15 minutes on the stationary bikes. Still my heart rate according the the hand sensors on the equipment was around 200 or more each workout. After a few days of this I began bringing it up in conversation with people I had known for years, the type of people that might as well own the gym because they are there so often and have worked out enough. They kept commenting on how their heart rate at  a full run never exceeds 180 and I should be cautious. I researched the typical target heart rate for someone engaging in cardio strengthening exercise at my age and weight, and all the figures said I should aim for around 170 bpm. How could I control that, if my heart rate skyrocketed at just a walk? After about a week and connecting the dots I called up my Primary Care Physician who scheduled me for an appointment that week, with concern for worse problems. After checking me out in the office and hearing a normal heart at a calm pace of 80 beats per minute, she performed an ekg and decided to refer me to a Cardiologist to double check what could be happening, and ordered a 24 hour halter monitor. Within five days I was receiving a call from my Lyme Specialist's office. The blood work I had drawn every Monday while on IV medications came back abnormal, with liver function levels double the suggested range. Immediately the LLMD stopped all antibiotic treatment for a week, prescribing Milk Thistle for liver cleansing and telling me to keep hydrated. After a week I returned to the lab yesterday to recheck the levels. I'm still waiting for the results to come back about that test while I reschedule work tomorrow so I can make it to my Cardiologist appointment. All of these things add up to a hurting, nauseas, declining, forgetful young girl who still is pushing through for friends, the gym, school, work, volunteer activities, and last but certainly not least, horses. By the end of the week I will have a better idea of what the plan is for my treatment and coping strategies, and hopefully my LLMD will set my mind at ease next Wednesday when I see him.

Two Steps Forward, Three Steps Back

After four weeks of being on IV Doxycycline, the last medication left I had to try for IV, I still felt no better. My memory betrays me just as it does those around me, and I forget the exact reason why I stopped IV Doxy. I remember a phone call with the nurse at the doctor's office saying it would be best to stop the medicine, maybe from me still not improving? They wanted me to start back on Mepron for the month, and I only remembered to take the yellow paint-like liquid once. In fact for almost an entire month I completely forgot probiotics, Nystatin, B12, and Magnesium which are all important supplements I take to help me get through from day to day. I was told to wait another month and see if just the Clindamycin would do anything, however I knew in my heart that it wouldn't. Why sound so pessimistic? Well, I know I've been on the medication in the past, two separate times. I know that once you do a medication seriously and then stop, the bacteria tends to seem more immune to the substance in the future. Some argue that fact with the idea of pulse therapy where you start the medication for a short bit of time, then stop it long enough for the bacteria to be caught off guard when you restart two weeks later. Pulse therapy is a very common treatment plan used by New York specialist Dr. Horrowitz, I believe, not something that ever worked in my situation. For some people, those more sensitive to medication changes that feel Herx type reactions with treatment, Pulse therapy can be the difference in successful treatment. I have always been difficult to treat, with a poorly absorbing stomach and impossible Lyme symptoms. Very few medications made me feel a possible Herx, and very very few made me feel better. There was a total of two summers I did very well with no rhyme or reason, and I am beginning to think it was more heat and mild weather related than it was medications. Beside all of that, I also know that the second time I tried Clindamycin back in the spring, I felt no effect from it. My main hope in my treatment after leaving my LLMD's office was for the Iv Doxycycline, keeping at the forefront of my mind its effectiveness in treating Lyme and Coinfections like Bartonella and Babesia, both I'm suspected to have. For now I slowly decline until I see my Doctor again, dealing with other issues in my personal life, and trying to survive a more normal life as a student and part time employee.

Minocycline, Plaquenil, Worse Symptoms

A few weeks ago my doctor's appointment was enlightening. We were happy with my progress, discussing removing the PICC line soon, and working on getting me back into school. We switched the  Zithromax to Minocin and Plaquenil to better combat my neurological symptoms, and I regret it. I now have suffered such bad symptoms, that I couldn't tell what was causing the problems. I had my first cycle since being off hormone medications, which sparks the Lyme up and messes up my body; the medicine change would could be either side effects, herx reaction, or just me backsliding; an increased stress level on the home front and personal side of things; and then the added challenge of trying to get me back into school work and bible studies all over again. Now, I spend all day every day feeling like the room is collapsing in on me with this weird dizzy vertigo type feeling. My eyes are acting up and so light sensitive again it is actually quite sad. My sound sensitivity has gone back up to the point where phone conversations are a challenge. Within the past week I had a migraine almost every day, managed with lots of mid day naps, a dark room, Tylenol, caffeine, loads of water, and ear plugs. After a nap and some medications it would usually reduce to a manageable point where I could sit up, talk, or eat lightly, but was still nauseas, taking a combination of nausea medicines, and still too dizzy to make it farther than the bathroom. Yesterday I did not have a migraine, I had other problems and stresses to manage. I have not had one yet but I'm trying to update all my fellow Lyme sufferers before it hits and I'm out cold for the rest of the day and night. I stopped the Minocycline, which was the second one I had started right before the migraines hit, and I'm waiting to see if my brain clears up a bit in the next few days. I have stayed on the Plaquenil the entire time so I can better see what is causing my symptoms to be worse. Small steps of change. I plan to be back on my gluten free casein free caffeine free diet as soon as this calms down and my progress changes direction again.

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.

Surgery Recovery and Response to Clindamycin (First month)

It's four days after surgery and I'm on zero pain killers. My head hurts and my stomach is aching with sharp radiating pains, but it's not any worse than other pains and being on narcotics is bad for your stomach and causes additional problems so I'd rather tough it out from here. I had a rough nights sleep last night on no medicine but part of that was due to being stressed out because of a relationship upset. Yes, I'm a regular teenager with average relationship struggles that come and go and sometimes can't be overcome and can end a great thing at a not so great time. On the day of the surgery I came home before 3 pm and was on Tylenol Codine and ibuprofen and whatever else they gave me through IV. I got to lay in my comfy bed and be in great pain. The next day I rested and spent time with Mike. I was in so much pain that he had to do pretty much everything for me including sitting me up since my abs hurt so bad, and feeding me. I couldn't cough, standing up caused me to be in so much pain while my stomach adjusted that I couldn't breath, and my abdomen was full of carbon dioxide from the laparoscopic surgery. There is four incision and one big one along the bottom of my belly button which makes five (there are two in my belly button I believe). Today I am feeling much better, my head is killing me and my stomach hurts worse when I move but in general I am much better than the past few days and I am happy for that. I see my Lyme doctor on Wednesday to discuss how the clindamycin is working through IV. I believe it has reduced headaches and brain fog and maybe even generalized pain, but I need more time to figure it out. Hopefully he won't change it for another month. Next post, on the new car!
Surgery:

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.

Mother's Day and ABC News' 20/20

On Friday I got an email from the 20/20 TV show on ABC news. They are doing a special this upcoming Friday at 10 pm on kids with hard to explain illnesses. They saw my videos that my mom just made public on You tube two weeks ago, and tracked down my blog and decided they wanted my story to be one of three. I feel so honored to show the trouble of Lyme to the country and be a spokesperson in a way for this disease and advocate for other teens suffering with similar problems. After this huge news I attended prom trying to put it in the back of my mind and I spent all Mother's Day cleaning house and eating ice cream. Finally today we got to get some good footage of me in regular day to day activities including at the horse farm with Miracle and on the couch with Mike and even me eating at Dudley's Ice Cream near the mini horses. It was overcast and sprinkled throughout the day but it was still good lighting. Now as they have all gone home I feel like crashing. I'm so tired from two days of stress and forced smiles that I just can't wait to lay in my bed and stare at the wall. Early in the morning I'll be leaving to attend the interview sessions taking place in my Grandparents living room for the morning. Then the crew will meet with my doctor in the afternoon. A long week ahead, but for now rest so I can handle tomorrow's excitement.

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'.

Hyperbaric Oxygen Treatment

As part of my drug holiday and to help me recover from lingering concussion symptoms, my Lyme doctor really urged us to try Hyperbaric Oxygen Therapy (HBOT). The office has a soft shelled chamber that basically pressurizes oxygen into your system while breathing 100% oxygen for different amounts of times. The thought is that the oxygen increase for the short amount of time increases circulation and oxygen levels to the point where people receiving the therapy notice improved energy levels and medicine effectiveness. Children receiving Chemotherapy spend time in the chamber directly after their treatments to increase the Chemo's effectiveness by pushing it into all the tissues. Concussion symptoms are noticeably improved by the oxygen increase to the brain and Lyme sufferers may notice more energy and less joint and muscle problems. This is an effective way of improving the benefits of treatment but it is out of pocket and fairly expensive. For one day, the next three weeks, I'm going to receive treatments to clear my concussion symptoms and help with whatever Lyme detoxing I'm doing on this drug holiday. Huge prayers that I can have the patience to lay in this loud machine for an hour and fifteen minutes every Tuesday morning and still be able to drive home afterward.

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.

Nastar Racing

Today I woke up to 2 inches of fresh snow, white outlined trees and sun sparkling through the crystals all over the ground. It's finally begun to look like winter in my neck of the woods, and I used the opportunity to embrace it and complete my first race this season. I bundled up in my new skin tight racing suit called a GS suit and hit the slopes with my friend from the school race team, Kayla. We did 6 runs for ten bucks and had a blast, and I ended up getting third place and receiving a bronze medal. There is a light at the end of every tunnel, and if I can persevere through a PICC line, two sprained fingers, tendinitis in both elbows, knee pain, and sight problems to take third on my first race of the year than I can make it through anything. This was the renewal of hope I needed in my life. A sure spike to my confidence level, and a pat on my sore back to encourage me to keep my chin up! I will be looking into more races in the future, and definitely picking it up more next year.

Switch of Infusion Antibiotic

My last Lyme appointment went really well, we decided there was notable improvement but we also decided, thanks to insurance coverage reasons, that I should start an every day infusion of the next level up. It's in the same family as Rocephin but it's a bit more powerful and expensive. The Insurance company approved this with the thought that I would get better with this final punch but we are unsure how the approval of the next month of med.s will go. I believe its called Invanz. Since switching, which I believe its been less than a week, I have been super tired. I've had headaches, I'm just really under the weather. I was told I need to keep on the diet 100% and I haven't been able to yet but I need to. I've been doing major detoxing which I will talk about in another post, and hoping that would help with the switch. Currently I'm trying to be patient and see if we can get me back to running and skiing.

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.

Picc Pain Passed

Its the third week of Rocephin treatments now. I notice no improvement other than the pain I had shooting down my elbow from the Picc procedure has diminished. It started getting better after 5 days of heat packs and ibuprofen. I'm much more comfortable with moving and using the arm now, and even sleeping on it. Though it took me 2 weeks to get a real shower and the wrapping it up process was not fun, I have adjusted. My mom does the IV treatments every 12 hours for 4 days a week. Shes comfortable with keeping it clean and we are careful not to get the tip dirty. We have a fold up light weight side table or TV tray that we cover with the medical sheet and use for our treatment area. When the weekly VNA (visiting Nurse) comes to change the bandage she likes to have an area to set up shop. We noticed problems with the little blue line kinking because the butterfly was not up high enough to keep it straight, and therefor I had troubles with the IV treatment for a week, but she fixed it so it doesn't kink and I can do things while getting my treatment. Having the Picc in is not the end of the world, its a challenge to not get it wet in the middle of the summer but it is manageable. Now I'm just trying to do visualizations and rest enough to let the medicine do its job.

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.

Hospitals From Hell

We got to Concord ER where they rushed me into a trauma room and arranged for me to get an IV from an EMT student. They ordered a head CT and the basics of blood tests and urine tests to make sure I wasn't drugged or prego. Even though you can give emergency room doctors the best reasons why there is no chance of you being on drugs they still have to check as it is standard protocol. Once they decided all my tests were clear and they didn't know what to do with me they fed me terrible cafeteria food and ordered an ambulance to transport me to Boston Children's Hospital since we were 100% sure that Dartmouth did not believe in Chronic forms of Lyme Disease. I don't remember the ambulance ride aside from singing 'Take Me Out To The Ball Game' as we passed Fenway Park in Boston. Once I got there we got settled into a crumby ER room and waited for 7 hours just to talk to one neurologist and fail the neurology test miserably. Then they hospitalized me upstairs and we got settled in for bed at 4:30 AM on Sunday. After a few hours of sleep we heard from a few doctors and got blood drawn but I was already feeling a tad bit better. They took me off all my medications with the theory that 'Not even the best pharmacist can tell if 25 medications are colliding or not, they can only tell if one messes with one, not the entire webbing network of my 26 including over the counter medications and supplements'. They also changed their minds and didn't run the lumbar puncture (lp) or spinal tap, and the MRI they wanted to run. Simply, I had improved a tad bit so it must not be neurological.

On Monday I woke up feeling much better, did some physical therapy and walked down to the Boston Children's Garden, and I spoke with a psychiatrist who labeled me as over bubbly (which for the record is an extreme compliment and he did not even realize it). I did an OT evaluation which determined OT would be helpful but never fell through. I introduced myself to my neighbor/room mate who had a lot of stomach pain that brought her to the hospital and was given the same excuse that her body was over stressed and wired wrong, and there was no actual reason for her pain. That night we were told I'd be going home Tuesday afternoon and my room mate moved rooms so we had a private suite for the last night. I was woken up by a neurologist at 7:30 AM, who decided that since my neurological exam first thing in the morning, before I could even see straight, was perfectly fine I was okay. All I can say is that is the most ridiculous excuse ever. They had a large meeting with my entire team of doctors that all shared and discussed theories of me being over stressed and wired wrong and crazy, thankfully which I was not present for. Then we waited a few hours to be released and 'yessed' them to death so we could get the heck out of this place that believed that I never had Lyme and was treated incorrectly by the only doctors that ever really listened to me.

We got home at 9:30 PM on Tuesday and I crashed into my comfy bed, thankful for no IV in my arm and no people prodding me all night. From here we would just push forward and try to see if maybe the medicine theory could be right, or maybe the stress theory was close to correct. For now we just would wait and see.

New Specialist in Vermont

Friday was the end all, be all. I had been suffering from autism-like symptoms for just days, since the Saturday before. Yet still I was bad enough, pacing in my wheelchair, screaming at the ceiling, talking a million miles per hour, and sometimes not even making sense with my mumbling, to the point of keeping myself up at night, that a doctor in west Vermont was willing to fit me in his busy schedule that week. After hopeful calls to Dr. J in Connecticut, the world's only pediatric Lyme specialist, we got a hold of the doc. himself and he said his practice    was closed to new patients but he recommended the doctor in Vermont who was familiar with Autism and Lyme. He fit us in around lunch time Friday and it was a hectic 3 1/2 hour car ride there. The whole time I chattered and screamed out the window and I don't even remember the trip. Talk about a long car ride, I'm sure both my parents and my boyfriend Tyler were ready to leave me in Vermont. The Doctor saw me throughout the 2 hours in his office and prescribed the step we are going to take before we try IV Rocephin treatment. I was prescribed anti fungals short term, anti inflammatorys for my brain, a medicine in the same family of Rocephin called Onnicef,  along with Zithromax and Plaquenil, even B supplements. I am also on a Gluten Free, Casein free, Caffeine Free, low Sugar diet, see post about New Diet. This should be a fun trip and the hope is to reduce neurological inflammation and increase my energy levels.

New Med.s

Hey everybody, stopping in to give a new update! Started the beginning of this year with a new protocol for my Lyme treatment, and I actually for the first time in 2 1/2 years either feel some side effects or herxing from these three new Antibiotics. I am on Plaquenil, Biaxin, and Amoxycillin. I have been on Biaxin and Amoxy in the past by themselves, and then was on Bactrim and Biaxin together for a little while, but Plaquenil is new, and together with the other two! I've been dealing with lots of nausea, stomach pain, sleepless nights, headaches, neck tension, some tingling and numbness in my fingers and feet, and some surface tingling on my stomach. I've also been edgy and have no concentration at all! This is all new stuff, one night I was up vomiting all night, another night I was up nauseas all night, and many nights I've gone to bed nauseas, or woke in the middle of the night nauseas for a bit. I have experienced some vertigo and dizziness. I'm still taking Carafate for the Gastric ulcer, going to see my GI MD next week.... She is not going to be happy now that i'm on THREE abx.... oh well, got to do what you have to do in order to treat this crumby Lyme Disease.

Babesia Treatment Started 6-17-09

Babesia, one of the many co infections of Lyme, is not easy to treat and can cause many symptoms that can disable someone to regular every day activities. This strand of bacteria alone has hundreds of different strands within itself, and is something that my family was not comfortably able to afford testing for. Through Igenex labs in Ca., the one trustworthy Lyme Literate lab in the U.S. that tests for all its infections CORRECTLY, It will cost somewhere up to or around $600 for the extended co infections testing. Just for Babesia, or Bartonella testing, it is somewhere over $100 a piece! This is pricey, as the co infection tests are far more extensive and tough to execute than Lyme Disease. In fact, it is tough to even get one of these tests done through a local lab, and it is almost a waste of time in my mind as it won't be accurate enough to barely tell you anything. However, every person has different body types and the bacteria may show up more for one than another...... it is all dependent on the way god wants it to work out.

So if testing and diagnosis is so difficult, then you can imagine that treatment is tough too. Most of my symptoms (headaches, sleep apnea, concentration, dizziness, fatigue, stretch mark-like rash) all point to Babesia and/or Bartonella. We have tried treatment towards Bartonella and got no effect, so now we have pulled out the big weapons and are going to pack a huge punch to Babesia! Since 6-17-09 when I saw the LLMD, he prescribed Zithromax (a powerful antibiotic usually prescribed in a five day dose to last up to 14 days) so that it could treat Babesia and/or Lyme, mostly Babesia. There are some treatment regimens that claim treatment of co infections before the Lyme is more effective. For me only time will tell. The Zithromax is an every day 500 Mg. dose for me, to be taken by itself without herbs/supplements/vitamins. This is tough to accomplish when you take near 62 pills a day. The effect of the Zithromax was that I had a herx reaction (finally after trying medicines for 9 months with NO effect but steady worsening. Con was that It was July 4 weekend to start with, keeping me out of some exciting events, and that we had roped ourself into puppy sitting that weekend, and I was suppose to help a LOT.). Then I realized a very slight reduction to headache pain. It was just enough to take the edge off of the constant pain I felt, and enough to encourage me to get to work with my summer project of completing redecorating my room.

7-22-09~ the LLMD appointment went good. It has been decided that I am starting Mepron to go with the Artemesia, and Zithromax for a full blown Babesia treatment! The issue is in the Mepron. It is only an oral medicine, that comes only in liquid form, and only in Citrus flavor which I don't even like! This medicine is the thickest, and most NASTY medicine I have ever had to take. It is bright yellow, like a school bus, and literally the texture of paint, Elmer's glue, or nail polish. It feels like Concrete running through your system, and I can feel it moving through my entire GI track, which isn't very appetizing. Having to take a teaspoon of Mepron twice a day right after a meal is kind of similar to having to drink Barium before an Upper GI Test. It has a bad flavor, worse texture, and worse effect of toxicity of my body! I thought nothing could be worse than the Bicillin Injections I tried.

I hope though that this Mepron will move through all my body systems and effectively sweep the Babesia infection out of me, making me feel well enough to move on with my life dreams and aspirations.

Bicillin Injections

Last time I posted I was on a cocktail of herbs. I was taking about 35 pills daily. We determined that i was not getting the right improvement from the 'just herb' regimen, and we have chosen to add something to that!

I am now doing Penicillin Injections, which are a painful way of doing things but for some people can be more effective. They are deep intramuscular shots, so they are not like the oral antibiotics and are believed to be more concentrated, and they enter the body differently. might as well try it, right? Well this I have found to be pesky. I don't feel any better, my butt or 'hip' is always sore on one side or the other, and it's a shot every other day during the week! [The actual shot (for those who wonder) has a 1 1/2 in. needle, 2 CC.s or 2 ml. of thick ABX fluid, and is 'deep' muscular, meaning it is a very large shot. To give a comparison, the painful Tetanus shot is 1/2 CC of that painful fluid, this is four times that of a painful thick fluid. it also has 1/2 in. longer needle..... You can tell it is painful and long.] I requested for us to try the intravenous antibiotics, meaning the PIC Line, or IV fluid that goes directly into either my vein, or my heart. However we must try every other approach first!

I will be going back to my LLMD on the 17, so we'll see what he says about our check-up from the injection therapy.

Elaina