Where I'm At Now, Zio, Hematologist, 3 months Post Op...

Lot's of people have been asking how Im doing post surgery and with the start of my Lyme treatment again. This post may be rather long but here is where I'm at now.

When I was a child, I used to play with my two older brothers in the woods behind our house. All of the neighborhood boys would gather together with their fake weapons and camouflage clothing to play war. Being the only girl, I always pressured them to let me be the nurse. I had the dream of helping people out in the medical field, and cherished my education about it throughout middle school. I took things seriously, like extra curricular activities and sports, trying to educate myself about exercise and prepare for a long life in school to become a doctor. I never knew that when I turned twelve I had one last summer of joy before my life was overtaken with medical knowledge. I did not become experienced because of my own choice to, though I would be inevitably. I was thrown into the situation of being a chronic illness sufferer and advocate for others around me fighting disability. I look back on that final summer seven years ago and remember the late night bond fires, the first girl that moved into the neighborhood and became my best pal, hiking all over New Hampshire, spending time with friends and creating goals like learning guitar and becoming involved with horses. I was active, fun loving, popular, and a thriving social butterfly. I pushed to be the best and loved reading the last of the Heartland book series. That summer was my first time on social media. My new friend created a Myspace page for me, and I remember sneaking my age to thirteen to be included in the popular crowd. Little did I know the entitling age of 18 would have been such a terrible year for me, and that I'd wish to go back to where I was not a teenager yet. Our entire lives we push to be older and stronger and prettier and more independent. When we finally get there we see that it's nothing special.

Since my last post my life has been a whirlwind. I developed serious recurring symptoms due to the six week steroid treatment I was on. Babesia was running wild in my system. For those of you who don't know, Babesia and Bartonella have been my worst problem alongside Lyme Disease for the past seven years. They are all co-infections, they come together from a tick bite and can be the worst problems in the complicated case of treating Chronic Tick-Borne Infections. My symptoms consist of memory loss, nausea and stomach pain, joint pain and muscle soreness, headaches, dizziness and fatigue, and severe anxiety and depression. My anxiety has progressed to a point where it is worse than it's ever been. I have days where I fall into an anxiety attack and begin shaking and seeing blurry, running to my room or away from people to hide and melting anti anxiety narcotics under my tongue to get the quickest effect. I have become impossible, seeing the world as doomed around me and weeping for hours on end after starting fights with my boyfriend.

I called my specialist this week begging for a change. I told them I could not handle this hell anymore, that I was not eating and suffering from stomach pain and depression like no other, and needed help. They immediately got me an appointment this Wednesday where we can talk about treatment and getting help for my depression/anxiety.

Last week, I received a letter saying my health insurance through the state was ending. I called Medicaid to ask what that was all about, because I had been told I would be covered until the age of 20 with children's medicaid due to the newly passed expanded medicaid law. This was very reassuring, but now I was being told that was incorrect information and I was being dropped off of my insurance in just a week. I do have a financial assistance program that covers all of my main doctors and some testing, but it does not cover my medications and additional doctors, like dental work. This will throw quite the wrench in my plans.

As for post surgery improvement, I am doing my last physical therapy in about two weeks. I have switched from joint and muscle work to exercises and strengthening and will be testing my range of motion and strength at my next visit. My cardiac rehab appointments have increased in difficulty and I have been getting into a good workout routine there. I also have been increasing the weights and trying really hard to get myself to a point where I can get to the gym. It's been difficult getting myself to a point where I have the strength and motivation to get out of bed and drag myself to the gym. This is a constant obstacle for me, trying to maneuver around the Lyme Disease and it's affects when I only feel decent in the evenings and then I need to get to bed so I can sleep long enough. My rib cage and sternum pain have gotten a lot better, as time has gone on. I still cannot do the motion of putting my arms forward as if to hug myself, and I'm hoping that will improve over time.

The rehabilitation center watches my heart as I exercise, and they see a lot of changes in blood pressure with medication adjustments throughout the post op experience. I visited my cardiologist a few weeks ago because of the feeling of fluid on my legs. He prescribed a diuretic which lost some of the fluid weight after taking it for three days in a row. He also was worried about the electrical rhythm of my heart during exercises so he started me on a two week Holter monitor called the Zio patch. It's a two week EKG patch that watches your heart and highlights the moments you press the button (when you feel a symptom). I won't have the results until almost August close to when I return for repeat blood work for the Lupus Anticoagulant disorder.

My hematologist appointment was uneventful and we did not learn much, other than Dr. Walsh is a very understanding physician out of the New Hampshire Oncology and Hematology Payson Cancer Center at Concord Hospital. The experience was very pleasant and the only downside was that she mentioned possibly referring me to Boston to a blood clotting specialist. She said she sees a lot of blood problems and clotting with multiple generations is not her specialty. Now we must wait until the end of August for an answer about that.

Thank you for reading this long post, and I can do a continued post on my experiences with the Health Profession Opportunity Project (HPOP), horse shows, college preparation, health insurance status, and my next treatment plan after Wednesday's appointment.

2 Months Post Op

Two months after my Open Heart surgery I have hit the wall. I have not gotten any further donations on my fund web page (see 'GoFundMe.com' post), which means my car still declines in condition and I struggle to find ways to keep it rolling. I turned 19 on Saturday which was more of a gloomy day than a celebration as I lost my NH Medicaid insurance and had no health insurance whatsoever (too poor for Obamacare). I tried to enjoy a weekend's worth of activities (see 'Boston Aquarium Trip' Post), which resulted in a return of old symptoms like muscle spasms in my neck and weakness in my legs causing them to give out altogether.

The previous Tuesday, I attended cardiac rehab and was informing the exercise specialist of the situation with my insurance when she suggested a new idea. She thought that if I was going to be working out at a gym on my own, I should first push myself while on their holter monitors to see what my heart does under that sort of pressure and if it cools down at a normal rate. She encouraged me to push myself on the stationary bike and after about eight minutes and a heart rate of 160 she encouraged me to slow down to make sure my heart rate dropped at a normal rate. It dived to a point where my blood pressure could not adjust to the rapid change and I ended up feeling dizzy on the floor. I was picked up off the floor by the director of the program who promised to make some calls and get my financial assistance application pushed to the top of the priority list. After sitting through the nutritional class and drinking a few boxed apple juices, I felt well enough to go get the blood work done that my Lyme specialist ordered a few days earlier. Ten vials were drawn along with a urine test to thoroughly check out my systems before the end of insurance coverage that weekend. I felt good enough to head out to lunch with a friend at Friendlys and then was picked up and driven to my disability determination appointment. The appointment was short and sweet and I had no idea how well or poor it had gone, as the doctor encouraged me that I would be hearing from Social Security eventually. I walked back to the car with my head down, slightly concerned that maybe I did not describe my situation well enough and maybe he had not had a full picture drawn of what my symptoms are when I'm in really rough shape. This of course all was happening before I declined that following weekend to a point where I had trouble walking and holding my head up straight after a weekend of birthday activities. I also had started a new anxiety medicine called Klonopin which was affecting me so severely that two hours after I took it I could not function until around lunch time the next day. This was resolved when I began cutting the dose in half after a few nights. I also just started biotin, for my nails and hair which is a healthy supplement for me since I do not drink regular milk and only can handle almond milk.

My total medication list when completed looks a little something like this:
~Vitamin D-3(for energy)
~Biotin
~CoQ10 (good for the heart)
~Magnesium (I tested deficient, great for the gut and detoxing)
~Probiotics (great even when not on Antibiotics)
~Lopressor (blood pressure and heart rate medicine)
~Aspirin (blood thinner)
~B12 (also good for energy)
~Carafate (stomach coating, helps with ulcers)
~Clonazepam (Klonopin, anti-anxiety and depression aid)
~Orthotricyclene Lo (for ovarian cysts)
~Nystatin (chronic yeast overgrowth)
and in the near future because of my worsened symptoms we will be adding treatment for Bartonella, Babesia, and neurological Lyme in the form of three antibiotics and a tincture:
~A-Bart (added to water to treat Bartonella)
~Rifampin
~Clarithromycin
~Omnicef
I have quite the pill box to put together tonight, and it will get fairly confusing as 2 of those are refrigerated, 2 are dissolving, 2 go in water, a bunch must be taken with food while other away from each other, and one is even four times a day away from all other medicines and food. It will get crazy keeping up with it yet again, and just in time for a busy summer where I want so badly to be normal.

My chest is recovering nicely, with only some muscle soreness and collar bone pain as it pops in and out of place. I do cardiac rehab three times a week and just started working on weighted arm exercises and yoga type stretching. I also still do the stationary bike and walk the treadmill. My improvement is visible and I am doing better than a lot would at this point in their recovery, but I am declining with my Lyme symptoms thanks to the Prednisone which ended this week. It allowed the bug to run wild in my system long enough to need a tough bite back.

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.

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.

Concussion with Lyme Disease

On March 1, 2012 I decided to go skiing in a snow storm with my brother and boyfriend. The trails were not groomed and filled with moguls, bumps, patches of ice, and slow traveling people and my weak knees couldn't hold me up. I fell on my first and second run down the mountain, and the second fall did me in as I landed right on the back of my neck. I made it for one more run because I felt that I had to keep up with my brother and I don't even remember it but I did the pizza all the way down the mountain and collapsed in front of ski check where they carried me to first aid. I don't remember the time where they strapped me to the backboard and loaded me in the ambulance but I remember bits and pieces from the ride. It was a traumatic experience as the neurological blow brought back my symptoms from last summer. I started with whole body convulsions that appeared to be seizure activity and heart palpitations. My scar tissue from the tailbone surgery ached and my throat tightened and slurred into an abnormal sounding voice. The last thing I remembered before losing memory and being brought into the hospital was the AED machine reading 'Extreme Tachycardia, prepare for arrest' and the thought crossed my mind that I was probably about to die from skiing, just like my mom always warned. No matter how ironic, I'm doing okay now. I am attending concussion rehabilitation with Concord Physical Therapy and they are working on post concussion symptoms like reaction time, memory, balance, and neck pain. Over the course of the almost two weeks since the accident, I am doing much better. I get dizzy when focusing on an object to the side of my field of vision or turning my head too fast, and I don't have the concentration or clearness to drive yet. I can't stand for more then five or ten minutes because I get nauseas and light headed. Through all the symptoms I still managed to participate in volunteering at the Lakes Region Home Show in Lakeport, NH last weekend where we spent time talking to people and handing out information about Lyme and the upcoming tick season. It's always a great experience to see people walking away with a new understanding of their body and the environment they live and work in daily. I'm honored to be of help to others with awareness.

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.

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.

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.

Heavy Pill Load

One thing that Lyme Disease pushes you to do is take many supplements and medications! This is something we all have to go through. It's stressful, and very pesky, but important to keep every system of the body working right, because there is also Lyme patients that don't do so well unless they get their pills! ;-)

I personally can relate to LOADS of pills, and the cumbersome task of swallowing every one of them, up to 5 times a day! Most of these include the supplements, vitamins, and herbs required to fight Lyme naturally. Others may be for assistance in the gastric system, organ function, or are just prescription medicine for different symptoms. I remember the day when I was told by my MD (this was when I was very young, before Lyme) that I would start swallowing pills from now on! It seemed like the end of the world!

I never could have prepared myself for the place I am at now with my professional pill taking skills! In the beginning it started under 10 pills a day, and when we reached 10 it was scary. As doses rose and kept the pill count climbing, it reached 11, then 15, 20, 25! We were shocked as we were told to take more and more types of pills, and the count varied, and rose again to 35 pills a day, and finally we decided to stop counting. As I now am at full doses of multiple herbs to fight the Lyme, and others to fight Co-infections, some to improve Liver function, and lower levels of acid in my stomach, and others for basic vitamins, it has become necessary to upgrade from the biggest pill box CVS was selling at the time, to a custom made box. A bead box that is MUCH bigger and labeled here at home, with much larger slots too! :-) The sad part about the upgrade, is that in the new box we have a tally of 61 pills every day! That averages out to about 15 pills per serving, and I have my 'pill meal' 4 times a day.

On a positive note, what a way to lose weight! Why don't we all just switch to pill diets! I am so full by the time I'm done this tedious task that I have learned to only eat about 2/3 of the proportion I could have ate. Then I still give myself 15-30 minutes for my food to settle since they make me so nauseous!

As you can tell I make fun of it, but when the moment comes to load my stomach with this number of pills I am not thrilled, in fact more annoyed than anything!

Sadly but surely, I can relate! So to those of you pill taking warriors, it's okay!
Elaina

Bartonella, Babesia

This is a little update and info on co-infections. Bartonella and Babesia are only one of the most popular co-infections in the tick disease community. (Bartonella is also known as 'Cat Scratch Fever'.) The marks for the traditional Bartonella 'rash' mostly appear somewhat as stretch marks in deeper purple or red along irrational spots on the body, but some get faded, these are stretch-mark impersonators that don't look anything to worry about. Young children, elderly people, even anorexic sufferers can get this awkward design on parts of the body(seen it in a book somewhere..). I know this from my mothers research to discover the cause of my bright purple marks on the inside of my thigh. They are slightly raised, and in the cork- screw shape almost like the spirochete itself! I was shocked when I first realized them one day trying on clothing. This was new, it just appeared, and was bright! (To make clear before continuing I have not yet been diagnosed officially with any co-infections as the IGeneX testing was too expensive for this workup. I have been assumed by my LLMD to have some sorts of co-infections, due to my symptoms and reactions to medicines.) These marks frightened me and I showed my mom. I had gained about 50 pounds over the year due to medicines, including growth in height, and foot size, and not being as active. I knew they looked similar to a picture I had seen before. Months later she was researching pictures on the computer and saw EXTREMELY similar marks from another female teen's thighs, and they looked exact...

So over time we concluded the reason and have printed pictures to show my LLMD next appointment. my brother has marks alike on his torso and shoulders, some on his legs that have gotten worse, moved, faded, and lengthened over the past year that we believe are Bartonella. My mom is getting him and my father tested for Lyme and making appointments for the LLMD.

So if you know someone or think someone has irregular marks, DON'T put it off for any further length of time, see a Lyme friendly Doctor and get the test done!!! A few herbs can take care of it for a length of time, or a while of antibiotics. I can't stress it enough how important it is to treat it ASAP... I would hate for more to suffer for a mark that looks like a stretch-mark.... But wouldn't you be concerned too if you were (or some cases are) in my shoes?

Babesia is similar, treatment and symptoms and testing. I may have that too considering my sleep issues, headaches, fatigue, and so much more similar symptoms. research up on this disease so you can help others near you!