A Different Person

Lyme Disease and Chronic Illness change people. You don't want it to, and try to stay the same person you were before everything surfaced, but you aren't the same person. Its just how it ends up.  

Before crashing and getting sick 9 years ago, I was an outgoing and active person. I loved people and staying busy, I didn't like staying home and wanted to the go, go, go lifestyle. I typically over did it and did too much, like a lot of this society. But that's how I liked it, it was fun. Once I got sick it slowly changed, I tried to keep up with that lifestyle, but it was so hard and it was making my health decline and negatively progress faster, which made it hard to function going at that speed. 

Now 9 years later, I feel like a completely different person, for the most part. I have learned to slow down and not to commit to so many activities. I am home a heck of a lot more than I ever was before. And I get worn out doing the smallest things. When I had 2 years of remission I was able to have a more active lifestyle with out so many consequences, but since relapsing I have had to step back again. I am still able to do a lot more than other times in my journey- I am currently working 50 hours a week, getting my kids to and from school and sporting events, etc. Just doing that all basically sucks any energy I have out of me. Which means not much left to do anything fun, or even keep the house clean. Its embarrassing, but there isn't much I can do about it. 

An example was last night- This week has been really hard, its even my off week, AKA drug break, but its been extra hard for some reason. Last night (3rd night in a row), I had to get my daughter to softball. I can not for the life of me get that poor girl there on time. Between getting off work, making dinner, feeding the kids and driving there, its a lost cause. I need to try and prep better but that takes energy, and I don't have it. Anyways, we got to the field (late of course) my daughter ran over to be with her team and my other daughter and I went to find a place to sit to watch. It was a really hot day and we had to sit in the direct sun. It didn't take long for me to feel really sick, light headed, sweat like crazy, and I was worried I would pass out. I was feeling really faint. Just sitting there in the sun and heat was too much. I wasn't doing anything or using any energy, just sitting there with my daughter. It's just kind of ridiculous to me that I can't even sit and watch a softball game with out ill effect. Of course the heat was playing a huge role in it, but it is still really frustrating. I was praying I was going to stay upright and I wouldn't pass out, freaking my kids out and causing a scene. Another example is as I write this blog post, I keep taking breaks because my eyes keep going blurry and doing strange things so I can't really see what I am typing. Something that has been happening a lot in the past couple weeks. Yesterday I couldn't get my right eye to focus all day. 

Just a lot of little things (although I am told often, they aren't little things) that have added up to big things over the years. I feel like crap, I look like crap, am basically a walking zombie that just wants to sleep all day long. 

Which brings me to my next point. Going out and being active when you are invited to things causes mixed emotions. I really, really want to be invited to things. I don't want people to stop inviting me because I am struggling, I do really want to be involved still. But, sometimes I have to cancel or back out at the last minute because I am feeling terrible. I don't want to and hate having to, but sometimes I just can't push myself hard enough, especially after long work hours. Or sometimes its a battle with in my own head. I hate who I have become. I was recently invited to a graduation party for a family I haven't seen in 8 years. I really want to go and see them, its been too long and I think of them often. But I am also battling the thought of going because I am not the same person they remember. I don't feel well a lot, I don't look healthy and people see that and even tell me that sometimes, and its really embarrassing to see people when I have changed so much. I am not me anymore in a lot of ways and I don't like presenting that to people that haven't seen those changes. It can be awkward. 

I don't want the disease to win, it shouldn't completely take who I am and who I want to be. I typically push through even when its a really hard day and I feel terrible, because I don't want it to completely change me. It is a battle for sure, but we can't let the disease beat us. Always wear your invisible crown friends. Some days we need it more than others. 

Mold

I get tired of negative updates, but I am so disappointed in our rental townhouse lately. I feel like there has been nothing but problems with this place since we have been here. For the most part they have been good about coming and fixing things when they need fixing. But it does really seem like it has been one thing after another, guess that's what happens with an old house that hasn't been updated in a long time. There are many things we like about the community- there are tons of kids for our children to play with, nice trails, swimming pool, lake and lake access, tennis courts, basketball courts, nice parks. But the actual home, its been disappointing. 

The really big one was when our shower pipes kept shaking/vibrating and was so crazy loud. We would turn it off really fast because it sounded like it was going to explode, that made showering interesting for sure. I kept contacting the rental company to come take a look, over and over again. Nothing, no one came. Three months worth of trying to get them to come look at it. And then one day it burst, yup, the pipe burst. Which in turn meant our living room ceiling started flooding and in the end came crashing down. Did I mention I was pregnant with our second child at the time and due any day. Awesome timing, so they came to fix it, and before they finished I had our baby. Thankfully they rushed to get it done before we came home from the hospital. But, it all could have been avoided if they actually were diligent with response time and getting things fixed, or actually coming and taking a look at it before it becomes a massive problem. Funny how fast the owner of the company that you didn't know existed, contacts you when you write a not so nice review/rating on google about the rental company. I hate being mean and having to get to that point, but I will if it effect my family and our health. So now I worry if they actually fixed it properly or if there could be mold growing under the surface. Which brings me to my next point-

I recently discovered mold in our bathroom. As if we don't have enough health problems in this family, hey, lets add in more mold exposure, that will be fun! Who ever installed the bathroom floor did a piss poor job and it shows. The edges aren't flush with the walls and they never would stay down. I had maintenance come caulk around the edges but it still would pop up. I finally just peeled it back to see what was going on, and there it was, mold, all on the underside of the vinyl floor. This was a horrible idea on my part because I exposed myself even more to the mold, but I tore it all up and threw it away. I went into pure panic mode and wanted it OUT of my house ASAP. There was a floor under it and after taking the floor up I could see the toilet had been leaking and it was clearly poorly installed. Who knows how long this has been going on, insert more panic. Maintenance came out, scolded me and told me he didn't see any more mold. I wasn't convinced but we had to wait for the owner of the place to respond before they could move forward with tearing everything up and re-doing it all, including installing a new toilet properly. That was probably a week ago, still waiting. 

Since then I have noticed that every time we shower, there is a black like dirt material that appears on the floor. At first I thought it was my messy 9yr old. Lord knows that girl practically rolls around in the dirt. But nothing was adding up. I would just wipe it up with a towel and throw it in the laundry. Tonight I had enough and investigated again. Yup, more mold. Can I tear someone apart now? Really? When I was looking around, I was pushing on the wall and baseboards. One section was damp and actually peeled off, that's where I found the mold, behind the drywall. Ugh, this is so dangerous and unhealthy. Not only for my own health, which is already struggling, but for my babies. My children do not need more health problems and this makes me so angry. So, once again, I am taking photo's for proof, emailing the management company, sending photo's to them, and demanding to know what they plan to do about this. Seriously, I don't even know what to do anymore. I can't have my health go to shit even more than it already is and my children cannot get sick from a house that should have been taken care of by these "professionals." I am at a loss and just really disappointed and upset. We cannot have these set backs. I guess if I have to, I will get higher up people involved and call the city etc, just real tired of having to fight extra hard for health. We will see what happens, in the meantime I guess I won't be taking detox baths since we only have one bathroom. 

Two Week Break

I am finally getting on here for an update! I completed my first round of treatment, which was 6 weeks, and then went on my 2 week break. This kind of treatment is called "pulsing", I will write another post explaining what that is, and why some docs treat this way. 

I was really looking forward to the break, I was herxing like crazy and so exhausted. I was really hoping the break would give me some relief and a nice break before the next round. Week 1 was amazing!!! I felt great, had energy, felt like I could keep up with life, was on a mission to get a bunch of things done around the house etc. I went a little crazy with my To Do list, it was just such a relief to feel so great after a rough 6 weeks. Week 2, not so much. I think part of it was me over doing it during week 1, and then also my body was crashing and it was clear I needed to go back on treatment. I still felt better then when I was on treatment, but not great. A lot of symptoms came back and tons of body pain. I was in a pretty ridiculous amount of pain yesterday. I over did it the day before having a fun family day fishing with the kids. I paid for it, that's for sure. But it was still nice to get out and be active and have fun. 

Today I started back on treatments again. I did my morning infusion today and I have already felt it kick in. Which is both good and bad. Good, because its killing the bacteria and doing its job. Bad, because I feel like poo. I really need to be better about detoxing this month. The reason many people on treatment feel sick is because there is SO much die off happening so fast that the dead bacteria floating around in your body becomes toxic. A persons body cant rid it fast enough. Hence amping up detoxing 100%. So there ya go, I will be detoxing tonight....I promise!! 

Feeling Defeated

I have been feeling defeated lately. When I first started infusing I felt fine during the day, but nights were really hard. I was on a HIGH dose for my evening infusion. I called my LLMD to ask for zofran and then my yucky symptoms just stopped. It was very strange. Doc still wanted to cut my dose in half since it was a very large amount and also got me some anti nausea meds. I haven't had to use any yet but I am glad I have them on hand. 

It seems as though the 3rd week of treatment has hit me hard and the fun and random lyme roller coaster has kicked in. I feel fine one hour and the next I am completely exhausted and herxing, and then again the next hour I am fine again. Lyme is so weird! Typically by night time and weekends I am completely fried. So exhausted its ridiculous. My daycare and my own children keep me going during the day and into the evening, but man I am pooped! Then you add in some insomnia and its a party over here!

 Tonight I pushed myself way too hard to get some shopping done. I wanted to get all Easter shopping out of the way but that also meant too many stores in one night. I am exhausted, my whole entire body is humming and vibrating, I am getting shooting random pain in various areas, and feel like I have fatigues muscles. 

Since my hubby works strange hours it has been hard for me to get all the errands taken care of. I am definitely going to do as much shopping as possible from the computer and having it delivered. Thankfully between amazon and a grocery delivery service here I think I can get most things I need. Also need to stop pushing myself so hard to try and keep on top of so many things. Can't be super women, need to give that cape a rest sometimes ;-) On a side note, I am thankful my 2yr old doesn't seem to really care much about me infusing and what its all about. 

Picc Line Is In!

Picc line is in! I had it inserted on March 1st, and thankfully the same nurse I had last time was who I got this time. She's really great-so kind, calm and caring. Last time I had my picc line placed they had a hard time getting it to go to the proper place. Thankfully, this time around they have some new technology and it went much, much smoother. It only took 1 try vs 4 last time. Phew, I was very thankful for that. I had myself worked up over it since it took so many try's last time around. I wasn't looking forward to that part of it. But this time really was a breeze, so easy and smooth and hardly any pain at all. 

Before they started getting set up to place the picc line, they hooked my up to a normal IV in my hand to make sure I wasn't allergic to a particular antibiotic. Once they got that running the picc line process started. Since I infused at the clinic, that is officially the first day starting back on IV therapy. I am now about 3 weeks in and have had both good days and bad days mixed in there. Here are some pictures of the picc line process. 

A New Health Chapter

About a week ago I traveled to see a new lyme doc.  I have heard for a long time that he is amazing and the top lyme doc in my area, so got on his waiting list. Took 9 months to get in but his current wait list is 14 months so  I was lucky to get in within a 9 month wait time.  The doc was great, he really took the time  to listen to my history, questions, comments and concerns. He did a great job explaining things and his staff was fantastic. The nurse also did a great job explaining all the strange tests she was giving me. They seem pretty up to date with the testing etc they were doing and I found it pretty interesting. Lets see if I can remember everything--

When I got there the nurse gave me some tests I have never heard of or had before. The Bioelectrical Impendence Analysis and Phase Angle and Cardio Wave Analyzer. 

Phase Angle is a calculation of 2 electrical properties, reactance and resistance, on a cellular level. Phase angle is an indicator of membrane integrity and water distribution in and around the cells in our body.  It tells us how well our cells are performing. Surprisingly, I did well in this test and my cells are working well in my body currently. 

For the Bioelectrical Impendence test I was hooked up to electrodes to measure body composition, fluids distribution, body fat, body mass, etc . It measures the resistance of the body tissue.He didn't end up going over these results with me so I am not sure where I stand with this one and no clue what the results mean on the print off. I may have to do some research on this one or just ask next time I am in. It basically just gives him a measure on how well my body is handling my current health state and will help give a comparison when I start treatments etc. 

Cardio Wave Analyzer. This tests Digital pulse wave analysis, Heart rate variability and The autonomic nervous system, Sympathetic nervous system Parasympathetic nervous system and Accelerated vascular. 

When doc came in we went over my whole history, I tried to remember everything since all my records didn't6+ come in time for some reason. Hope I hit all the important points, its hard to remember 9 years worth of medical problems. He asked a lot of questions and I thought it seemed really up to date in the field and very knowledgeable. Its pretty clear that both lyme and babesia are back full force. He checked my hands and feet with this vibration tool. My hands did really well and I have good sensation and no loss of feeling but my feet are showing some damage, I couldn't feel the vibration for as long or as strong in the feet vs hands. Right foot seems to have more damage than the left. He also said he saw arthritis in my front collar bone by just visually looking at it, one side sticks out more than the other. Hands have Rheumatoid Arthritis, he also said my hands have Swan Neck Deformity, which I have never heard of before. I looked it up and the definition--is a deformed position of the finger, in which the joint closest to the fingertip is permanently bent toward the palm while the nearest joint to the palm is bent away from it-- is exactly how my hands look. I hope my hands don't get worse because those photos on the web are disturbing!! Never google haha! He also did a brain assessment screener test-9 and above is severe...I tested at a 23. Which basically means my body is constantly in the Flight or Fight stage and why I have trouble with anxiety and lines up with Babesia always raking havoc on the brain and function of the brain. Aka-my brain and autonomic nervous system are a hot mess and all over the place.  The plan moving forward--

They took 6 vials of blood to run an immune panel, and new patient panel to monitor health markers.

I will be re-tested via I-genex testing in CA. They are the gold standard in lyme testing. Their comprehensive lyme panel looks for lyme disease from several points of view. This test will include an immunofluoresence assay, western blot testing and PCR testing. An immunofluoressence assay is looking for IgG, IgM, and IgA to lyme disease. The western blot looks for antibodies of IgM or IgG to specific parts of the lyme bug, and PCR searches for DNA of the lyme bug. While no test is perfect this is an excellent first step in the laboratory diagnoses of lyme disease. If we can prove lyme and get a CDC positive it really helps lyme cases and getting insurance to cover medications, testing, and the general medical world to take you serious. It also really helps your case if you were to apply for disability. Any good lyme doc out there will not just go off of labs, it also has to be a clinical diagnoses. Testing is just not accurate enough bc those darn bugs and spirochetes can dig so deep in your body. 

I have to come back two separate times for more testing. These tests are called Evoke. Evoke EEG and CNS vital signs. They can not be done on the same day so have to go back twice for this. The evoke test is a neurocognitive test but also measures a wide variety of my underlying neuro-endocrine physiology. It is a sensitive measure of  my autonomic nervous system balance. It is the autonomic system that is the interface between your brain and your endocrine and immune systems. It also measures and maps your brain waves, which help them understand how my brain is operating and how it is responding to stress. It also gives indication of GI health. mitochondrial health and certain chronic infections.

The treatment plan- Since its clear things are back full force, I had done many years of oral antibiotics, bicillin injections and responded the best to IV treatments via picc line, he is ordering another picc line placement. I have mixed feelings but I know my body will respond best to this sort of treatment. My only worry is I will herx a lot. Last time I had my picc line placed, I was warned by many to brace myself bc I am in for a hell of a ride with such powerful drugs being pumped into me twice a day. But, I felt amazing. This time around my body isn't going from years of orals and then straight to a picc line....so the herxing could get rough. But, I am hoping it makes me feel good again vs sick. As long as we can get insurance to covered it that's the plan and he wants to do this soon. The clinic is contacting a couple infusion companies and they will contact me to get rolling. He wont say how long the picc line will be placed for because it just depends on how my body does with the treatments but its a minimum of 6 months. In addition to IV treatments I will also be doing a bunch of supplements again.  I also will start a very high dose of stevia, a special kind. This particular dosing and kind is known for killing off lyme. Also on the list is to start HBOT--Hyperbaric oxygen treatments. NOT excited for this one, I am claustrophobic and being locked into a small chamber and being pumped with oxygen doesnt sound fun to me one bit. It has to be a special kind and luckily there is one not too far from my house. HBOT is a way to increase the amount of oxygen in your tissues. Studies have shown that HBOT can imprive all of the key physiologic areas of the functional medicine matrix. This included the GI barrier function and altering the gut microbiom. HBOT can kill certain pathogens, decrease inflammation, and improve the activity of white blood cells. It can improve mitochondrial function thus improving the conversion of fluid in the energy. Bio transformation/detoxification can be enhanced by HBOT. It has also been shown to increase the sensitivity to messenger molecules such as nitric oxide and certain growth factors. It has also been shown to release your own stem cells. I have  many friends who have done HBOT. 

Since originally writing this I have an update on the picc placement. I will thankfully be using the same infusion company as last time and even my same nurse for my home care! They are such a great company to work with. I will be getting the picc line placed next Tuesday, 3/1/16. I am hoping they get it on the first try and it's not as tricky as last time. Once it's in I can't feel it and it is pretty easy to use. Here we go, hope its not a rough ride!! 

Do You Feel Alone In Your Journey?

Do you ever just feel alone? You could have all the people in your corner, and you're still lonely. I think after a person has been chronically sick for such a long time, people just don't know how to help you anymore. Friends and family and anyone else supporting you don't understand. People will never fully understand what you are going through, unless they are going through the same thing.

I've been sick for so damn long, I'm drained, physically and mentally. I hit remission for two years, and that was so nice. A really nice break to feel so good for that period of time. It gave us a chance to have our second daughter, she was so worth waiting for, and all the pain and suffering I went though to get better. My children keep me going, I push through the days and nights that I'd rather not. It would be easy to surrender and just lay in bed and not care about what's happening around me. But that wouldn't be fair to them, and I would miss so many fantastic memories with them and my husband. But man, some days, some days are just so hard. My health is declining and I feel like it's declining more rapidly these days. I'm still able to work my job and function as a parent, but it's not easy, that's for sure. On the weekends, I'm so exhausted I just want to lounge around and veg to catch a bit of a break. Thankfully my husband is awesome and let's me sleep in, and if I nap, I'm out cold for a minimum of 4 hours. My body just needs it! 

I do feel like people have given up on me, I mean in the world of the chronically ill, why would they stick around? What are they suppose to say or do for you after all that time? It's the same story, ya know?! My answer is- just be there. Keep communicating, just talk about your day, ask about ours, anything really. Just be there for them, because they need it. The longer the chronic health problems go on the more support a person needs. I think it's hard for the outside world to see, we get good at covering the pain and anything else that's going on, because we have to. It's our world, and the pain that was an 8 on the pain scale five years ago, is probably now a 4 because we adjust. If you're reading this and you have someone in your life that's chronically ill, keep checking in with them. If you're reading this and you are the chronically ill person, know that I completely get it and we can lean on each other to get through. It's hard, really hard, but the world still has a lot of beauty in it, and beautiful people on it. We just have to look a little harder some days

Relapse and New Diagnoses

I am very long over due for an update on here. I gave birth to our second daughter in February of 2014. It was a rough pregnancy to say the least but I made it through and gave birth to a perfectly healthy, sweet, spunky little girl! I was on a two antibiotic combo while pregnant to help prevent passing along lyme disease to her. Even though I was in remission, it is still recommended you be on the two drug combo to protect the baby. We tested the cord blood and that came back negative. I am keeping a close eye on her but other than two food allergies, she is a healthy girl and we couldn't be happier with our two girls. They are the loves of our life and we couldn't ask for better children! Parenthood is an amazing journey, right?! We are so blessed! 

Onto my health. I am not doing so well, recently I've been diagnosed with Mast Cell Activation Disorder or Syndrome. Also known as MCAD or MCAS. Over the past year I have been having a lot of trouble with food allergies and sensitivities. I have has a few anaphylactic reactions, Iv'e had to use my epi pen twice and should have used it three times. Have been to the ER many times and just trying to figure out what the heck is going on with me. I was lucky enough to see a Doc in the Mast Cell field that is the top dog, many people travel really long distances to see him and lucky for me I didn't have to go far. I had to go through testing twice because its VERY sensitive and the first batch was mishandled so round two was the winner (or looser? lol). It proved I do in deed have Mast Cell and we can move forward with treatment. Its tricky and very confusing. There's only so much researching I can do before I get completely overwhelmed and have to take a break. So I still have a ton to learn. According to the specialist and the Mast Cell community, it can take years to find the correct drug combo that is the winner for me. Oh joy, sound familiar? It's all so confusing. This particular Mast Cell doc doesn't believe in chronic lyme and thinks the crappy testing out there is accurate (insert eye roll), so it gets really confusing what is Mast Cell and what is my lyme and co-infections. I really do not understand at all why these medical professionals don't believe you can have both. Of course you can, ticks and lyme are everywhere, its an epidemic so of course you can have many different health things going on at once in one person. And I am sure they feed off of each other and break the body down even more. I have so-much-learning-to-do. Its exhausting! I was also recently tested for the MTHFR gene and it looks like I have that too. Not surprising but still annoying to add more to the plate. Still learning what that's all about too and need to see the genetic team for more specific testing. Apparently I can be at risk for blood clots now? As far as the lyme, I think I relapsed a few months ago. I didn't want to admit it and also didn't want to pay an arm and a leg to see my medical team and for treatment. There is no denying it now though, I am getting worse and need to do something about it. Just in the last week or two the bone pain has gotten so much worse. Joint pain has been mostly feet consistently and lower back but now its traveling. Knees have been so dang painful recently along with feet. I am sure both babesia and bartonella are back from my current symptoms I am showing along with the lyme. I feel like an old lady. It especially kicks in full force at night after I have been sitting for a bit, its hard to get up and oh so painful. The joys, right?! So, I decided to make an appointment with my naturalist in a couple weeks and go from there. May be adding in my LLMD in NY too. 

My older daughter who is 8 is having a lot of health problems lately too, so we are trying to figure out what is going on and how to help her. There is a local peds Mast Cell doc that she will see for testing, most likely test her for lyme again and have some specific genetic testing done for her too. Poor thing is too young to deal with so much. She already has celiac disease and a metabolic disorder called MCADD. Lets hope we can get all of under control for her specifically. 

Tick Prevention and Proper Tick Removal

I have a friend that has Lyme Disease with a great blog and I thought this post was a great reminder. It is so important to know how to properly remove a tick! Check out her blog post HERE

Conquering Depression

7 Steps For Conquering Depression

 

 

• Unplug From The Noise

           Take a sabbatical from the news, facebook, Internet discussions, and any social interaction with grumpy naysayers, Debbie downers, and drama queens.

 

• Daily Exuberant Motion

       Turn on some bouncy music and move! Dance exercise, swim, walk, play tag, chase the dog.    Break a sweat and feel your heartbeat. Let the blues roll down the drain when you rinse off.

 

• Daily Mindful Stillness

          Spend some time paying attention to you. Sit still, breathe, and notice your body, thoughts, emotions. Work towards 20 minutes of compassionate awareness and acceptance.

 

• Cultivate Joyous Virtues

           What if happiness isn't something you wait for, but a habit you can practice? Compassion, gratitude, peace, passion, innocence, curiosity, play, enthusiasm, and generosity.

 

• Try A Pride Costume

           Scrub yourself up nice, and get dressed like you're proud to be you. Go out and do some work in a coffee shop or library. Walk tall, smile, maybe even flirt a bit. Shine!

 

• Eat Like Hunter-Gatherer

          Yes: Plants, animals, water. No: Grains, sugars, chemicals. Caffeine is great rising, but remember to ease off to encourage healthy sleep.

 

• Mitochondrial Support

          Supplement with CoQ-10, L-Carnitine, B-Vitamins, Folic Acid, and Antioxidants. Spend time in the sun for Vitamin D.

 

I saw this on Pinterest and thought it was a good list. It linked to Get Inspired Get Fit

 

 

 

 

 



Lyme Disease is the most rapidly spreading disease, faster than HIV/Aids TB and Cancer

I thought this was a great talk, check it out!

Remission

I AM IN REMISSION, yup I said it, remission!!!! I honestly never thought I would get to this place in my life. What a sweet word remission is, music to my ears and all of those fighting the Lyme battle. I want to throw a remission party, yell it from the rooftop, dance around, sing, party, do everything I couldn't do for so very long. I am very happy, but also leery. I know lyme can come back at any time and I haven't been in the clear too long. December 19th I had my PICC Line pulled out and have been in remission since then. I am currently on maintenance drugs so I am not drug free, but many good Lyme docs out there know that this is the best way to do it. You should never just stop treatment all at once. Your body has been sick for so long and on meds for so long that it would really throw it for a loop cutting things out cold turkey. So for now, I am on a couple to make sure things stay at bay for a bit. I take it everyday but everyone is different. I have a friend that is doing great and he only has to take meds one weekend a month to make sure he stays healthy. That isn't bad at all!

I have been gradually been getting better for a while but always hit road blocks and could never get over the hump. The key for me was the IV treatment via the picc line. Everyone on my medical team was amazed at how fast I was getting better on it. I hardly herxed compared to other treatments I have tried and was improving at a pretty fast pace. I only had the picc line in for a total of 4 months and it didn't take me long to feel well and could tell it was working! It is amazing to me that someone can improve so quickly when you find the correct combo for their body! Makes me wonder what would have happened if I would have done this a long time ago. 

It is fascinating to me that such a tiny tube in your vein can provide such important medications to get you better. A tube that is always in your arm, that goes all the way to your heart and stays there. Just chilling in your vein doing its job. A tube that is kind of complicated to get put in and so easy to take out. To take it out all my nurse had to do was pull it out, that's it! I couldn't even feel it and wasn't grossed out like I thought I would be. Such a tiny tube with such a big job! Boy am I thankful for that little tube! I had to keep the spot covered for 3 days so air couldn't get into my vein and then I was safe to let air on the spot and shower like normal. I kept it covered for an extra day since I was paranoid air would get into my lungs if it was exposed to air too soon. It has been very nice to shower with out having to cover part of my arm! Now you can hardly tell I had anything in my arm. There is just a small red scar that I am sure will fad more over time. 

I am living proof that long term antibiotics DO help and that many in the lyme community need that to get better. There is no easy or fast fix when it comes to such a complicated disease. It's a long, hard, hard battle. I wish all of us could get to the point of remission! Keep fighting the good fight and never give up!!!

Picc Line

I have't updated in a while and many things have changed! I was hitting road blocks with the oral meds so my lyme doctor and I decided it was best for me to get a picc line put in and get IV treatments. I was really nervous to get the line put in, I mean there was going to be a tube inside my arm to my heart that stayed there!! Ew! I knew I would be fine once it was in but the process of getting it in grossed me out. My hubby came with and I had two great nurses. There was a little trouble getting it in the right location but once it was in the correct spot I was good to go! Its been really great! I forget its there most of the time and once it healed I could do normal things with my arm again. My nurse said I could even lift weights if I wanted to. Note to self-get my butt in gear and start working out again ;-) I have had one blood clot in my line but it was really no big deal. My nurse came over and put meds in my line to take care of the clot and the line worked again!

I started out on one drug that was one IV a day, then I got bumped up to two IV's a day. Currently I am on two different IV drugs. One is a cyst buster that I do three days a week, twice a day. The other is the drug I started with that is four days a week, twice a day. I was warned by many that IV therapy is really rough and I will be down and out for a while, especially the cyst busters. Of course I have had bad days but its been a blessing to have this treatment. I have come a long ways in a very short period of time and I am not herxing like crazy like many people thought I would. I love this treatment, I only wish I would have done it earlier! Lets hope I keep getting better and will enter the world of remission soon! How awesome would that be! I never thought it was possible after 5 1/2 years of fighting for my health!! Check out facebook for more pictures of the picc line process.

Drugs, No Drugs, Drugs, No Drugs

Just a little update. My poor body has been a mess. I was doing great so my lyme doc wanted to take me off all drugs for a month in order to do the Borrelia Culture through Advanced Labs. It's a newer test and a lot of docs are super excited about it because it's much, much more sensitive than any other culture out there. I felt great the first 4 days off treatment and then went down hill very fast. Psychologically I was a complete mess, I was so tired, and a million other things. So after I couldn't take it any longer I called my doc back and explained. He had me go back on a much higher dose of one of my meds to try and jump start me back to feeling good. Not good. I-FELT-HORRIBLE. I needed to puke but wouldn't allow myself because I needed to keep the drugs in, which resulted in dry heaving. Needless to say I was HERXING like crazy, my body was not happy with me for cutting all drugs cold turkey and then going back on, but only one drug, and a higher dose than normal. I decided to change my schedule up and take them all at bedtime in hopes I would just herx when I was sleeping. It didn't really seem to help much. Finally two days ago I couldn't take it any longer and made the decision to go down to one pill instead of two. Yesterday I felt so much better and so far today I feel pretty good! Thank god! My doc wanted me to call after I was back on for 10 days and then we plan on trying to go off drugs again to do the lab in one month, oh joy, can you feel my excitement?! Not sure If want to deal with the off and on drug battle again. He is going to call my back and we will go from there. I am just going to enjoy feeling good again and see what the next step is we take.

Joint pain-Lyme or Damage?

Joint pain was one of my first symptoms 5 years ago, one day I woke up in a lot of pain and my fingers frozen in the claw position. I couldn't pick my baby up out of her crib, I couldn't unscrew her bottles, it was hard to zip things, button things, snap things, etc.  It just got worse from there and my body would add more and more symptoms as time went on and on until a doc FINALLY diagnosed me with Lyme Disease along with the co-infections Babesia and Bartonella. Fast forward 5 years and 2 years of treatment and my body is in a much better place. I normally don't have joint pain anymore unless I push it. So which is it? Lyme disease or permanent damage from going so long with out being diagnosed and treated? I often wonder this. According to one of my lyme docs my Lyme and Bartonella are in remission and I just have Babesia left. This one has been the hardest on my body and hard to treat and get rid of. So when I over do it and my joints hurt, is it the babesia? Maybe my joints will always hurt and get sore when I am more active. If I do a lot of sewing or crafting, I am sore. If I walk a long ways, I am sore. If I work out, I am sore. Maybe I am just not active enough? Maybe babesia is hanging on? Or maybe that is how it will always be. Its frustrating not knowing. At least it isn't as bad as it was 5 years ago. I just hope that one day it will totally be gone and there are no lingering effects of Lyme and I will be in total remission.

Toxicity

Impending doom fills the air


The fog takes over your brain

It is thick like sludge

Your thoughts slow down

You feel stuck in between two worlds

The toxicity takes over

You can’t think

You can’t focus

You are no longer thinking like a person

You are thinking like the monster that has taken over your brain

You want out

It doesn’t matter how

You want to be alone

But know you shouldn’t be

You want to run, but the monster will follow you

You want it to end

Even if the end is truly the end

You know you need to surround yourself with those that care

You don’t want to, but force yourself to

The disease can’t win

You are stronger than that

You are strong

You will beat this


You will fight like you always fight

You are strong

Panic Attack

Panic Attack 

Everything is loud like a fun  house

I cringe, plug my ears

Nothing helps

My chest is tight

A giant is sitting on it

My heart is being squeezed

I can't breathe

I need air

It's thick and can't get air

The room is spinning

I close my eyes, try to focus

Focus

Focus

Breathe

Feel the room around me

Feel the ground

Breathe

Breathe Breathe

Count, inhale

Count, exhale

You will be okay

You will not die

Focus

Breathe

Inhale, exhale 

Escape the noise

The body slows down

Count, inhale 1-2-3-4-5

Count, exhale 1-2-3-4-5

Slow down

The room slows down 

Breathe 

Breathe

Feel the air

The room stops moving

You are back

You are alive

You are breathing 

You are okay 

The giant has left

You are breathing 

Take a deep breath

Feel it in your lungs

You are okay

Julie 2012

Update

Thing have been kind of mellow going from drugs to drug breaks. Now I am on new treatment for 8 weeks and its already been rough. Lot of bugs dying, that's for sure!! Even though it is miserable I know that this is how I am supposed to feel and it just means the treatments are working. Today I have been a sick, over heating, sweaty, pukey mess today. Luckily the hubby was home from work so took care of the kiddo so I could sleep all day. This too shall pass and I will come out better in the end.

Coffee Enema Detox

Great video explaining how coffee enemas work for those that are interested in trying it. Its very good for your body

Doctor Update

I went and saw my out of state doc last Friday for my in person check up! It went great, love my doc! He thinks that my Lyme and Bartonella are dormant and I just have Babesia left. How awesome is that!!!!! I have two out of the three in remission now, woohoo!! So now we are slamming Babesia even harder to try and kill it all off. I had a little drug vacation and started back today on some powerful drugs. In 3 weeks I will add more and gradually bump up to the higher dose. I am a little worried about how much herxing I will be having with such strong drugs, but I have had plenty in the past two years already. So I say bring it on! Let's kick it's butt!! Let's hope in 3 months I am in a much better place, I am making some huge strides and SO excited. Babesia has been the hardest one for us to treat so we don't know how long this process will take but at least there is a light at the end of the tunnel now. Yay for good news!