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.