staying strong!!!

1 month of work down!!!

I really had a thought that I may never go back to teaching again.. I mean it is hard to believe where I was last year at this time to where I am this year. I feel so very blessed to have my life back. It may not be the same life I had before but I am happy and overly blessed with the life that I have now.

So.. I went back to teaching in September. Not only did I do that but I was a Matron of Honor in my best friend’s wedding, and I planned my little sister’s bridal shower. I also learned my new teaching job and went to school daily and came home to either going to Physical Therapy Wellness program or to a Drs. Appointment. Man- and I exhausted!! But I am so happy I was able to do it ALL!!!!

So I went to my LLMD last week and here are my results: Eliza c6 peptide is NEGATIVE!! Yay! This is month 3 in a  row that it has been negative and has been going down. My number is 0.62!! Went down 20 points since last month- YAY! Thyroid is also back in normal range!!! Such great news!

So, my CD57 is still low- it is at 35. It needs to be 60... This number means good chance of relapse (but I am staying positive!!)

 

My vitamin D is still only 23 so I am still on the super D supplements.. along with overs.. But Overall.. I'm happy with these results for now and I continue to kick Lyme Butt!!!!

back to work I go :)

So.. Back to teaching I go- Yay!  I made it through my first week- and boy am I exhausted. But, in a good way. I feel like I am part of society again. I love teaching- I couldn't have picked a better profession for myself. When I missed all last year I was so upset because I wasn't sure if I was ever going to be able to teach again. But here I am- back to school!

It has been hard because after work I then have to go to either Wellness PT program or to a Doctor's appointment. This week I have bloodwork before work. So it is just a lot to do and for my body to get used to. I am hoping being back to work is going to help me in the long run. I REFUSE to let this Lyme take over my life!!

I am continuing with all of my supplements, mycroplasma series ( it is so yucky) & the celebrex for   joint pain.  This weekend my entire body has been in pain. My legs- worst ever! I am thinking it is my body just in shock that I am on the go so much and not just laying in my bed or on the couch. This week in PT my hip/back have been hurting so much. My PT's have helped adjusting me and I have been doing stim/ice daily. When will all this be over? I am hoping someday soon. 

Overall- am I great? NO.. but I am working hard to live my life and dealing with the cards that I have been dealt. Little by little I feel better so I guess only time will tell. Thank you for all of your prayers and support.

A Year Later

A Year later….

So tomorrow ( August 31) is exactly 1 year since I was admitted into Jefferson University Hospital- Philadelphia, PA. That is a memory I wish I could forget but one I will always remember- It made me the person that I am today.. A Lyme Warrior!

That night I could barely walk, in so much pain, and so weak. Spinal tap, blood work, and IVs.. Which then led to a Piccline.. or 3  of antibiotics. I was scared and unsure how I was ever going to be “ me” again.  Crying that school was starting this week and I need to get better to get back to my students.. little did I know I wouldn’t be teaching my students this year.. but teaching myself.  Teaching myself to be patient and to walk and use the right side of my body again. To teach my brain to comprehend and be able to read. To teach myself- to appreciate all that I had in life because in the blink of an eye your plans and life could change just like that.

So where am I a year later….

Going back to work!! Yay! I did have to step away from my preschool disabled job this year due to the physical aspect as well and the germs ( my immune system is not that great).. but I am still teaching- and that is all that matters!!

Overall my last 2 doctors’ visits have not been great but could definitely be worse.  My CD 57 number was 37 which means I could relapse.. COULD is the word that I am holding on to. I am trying to stay as positive as I can!

I had 2 opinions and both were the same outcome. My vitamin D level is at 22 ( needs to be at 30). I am surprised so low b/c I do drink milk and am in the sun.. a lot! SO I need to start those supplements. Also, My thyroid numbers aren’t good either. I am trying the natural approach with that before starting that medicine. I personally think that all of this is messed up b/c of all the medicine I have been on and what my body has been through.

I have also been going to an ENT due to ear problems. We found out that I have severe pressure in my right ear and hearing loss ( a hearing test was preformed). I went to my integrative medicine dr. today and he said that my mycoplasma coinfection was back.. great! Or maybe it never went away b/c through the muscle test it is in my ear. But anyway.. its here. The weird part about this all is that my very first symptom (my ear) last summer was this ear and this ear pain.. Maybe the mycoplasma was my first co-infection and is the last to go? I am starting the series medicine now so we will see in a few weeks if it is gone.

Physically.. my walking has been great! I am working out every day with my PT in the wellness program. Lifting 6 lb weights and walking on the TREDMILL at speed 3.2- this is a huge deal for me! I am able to ride my bike and drive my car ( locally). The first time I drove to Target by myself I didn’t want to leave- the independence felt so good! So- is my leg back to normal? Not yet.  As, I am sitting here my leg feels like it is ice cold and numb- a feeling I guess I will have for a while due to the nerve damage. My leg and arm fall asleep a few times throughout the day.. But I am learning to deal and just live my life with it.  I did stop the Neurotin ( my memory/concentration has been bad so wanted to see if it had anything to do with the meds.) I am still on the Celebrex for joint pain though. When I try to stop that- boy can I tell!!

Overall… just trying to live my life with my wonderful husband. My energy is not the same as it was but I have been pushing though activities. I am learning not to let the Lyme win. I set my alarm clock every day- make myself get up and go!. I make sure that I go out with friends to party. Wear that makeup and cute outfit. Go to the beach. Waverun.. swim in the ocean! – It is always easier to lay in bed and wear my pjs.. but I just feel I am letting the Lyme win.. and I REFUSE to let that happen. So I am living my 28 year old life the best that I can!

In closing, as tears run down my face as I am typing… I just want to say THANK YOU! THANK YOU! THANK YOU! To God, My husband, My family, My friends, My doctors & Therapists, My Lymies- and all of you who read and support my blog though prayers and kind words.. Thank you. Without ALL of you- I KNOW I couldn’t have gotten though this past year. Thank you from the bottom of my heart. Let’s Raise Awareness for Lyme Disease!!!!! <3 

Doctors Doctors Doctors

So what has been going since this Piccline has been out?

I ended up getting sick. I guess this makes sense since I was on about 5 antibiotics for months and then just stopped. I ended up having a bad sore throat and bad ear pain/pressure. I went and saw my primary doctor who thought I  probably have Strep Throat or Mono. I felt so sick that I could barely get out of bed..

I then made an appoint with my Lyme Dr to see if it was my Lyme flaring up. He thought I may have Mono too.. So I went and had the Mono blood test- good news- no mono.. but I am still sick. I also saw my integrative medicine doctor who said my Lyme was in remission but I am still fighting off metals: mercury and lead.

I then went and saw an ENT who said my Eustachian Tubes were completely blocked. He then said steroids would be the best thing to open up my ears. Us Lymies know that steroids and Lyme are NOT a good combination. But I really had no choice- I was losing my hearing and in SO much pain. I ended up taking the steroids and the ear pain did get better. I am getting allergy testing done this week. It has been about 4 weeks that I have been fighting this cold/virus and now I have a deep cough.

Overall, I think that it is just hard to fight anything right now because my immune system is so compromised. I am continuing to workout out in the wellness program, eat well, taking supplements and try to heal my body.

I did meet with my Lyme doctor who told me that my c6peptide number was low! YAY! I was at 1.60 in January and now am at negative 0.70! I had more blood work taken on July 24.. I will find out how my numbers are on August 16- please pray that my number is still low! I also got a CD57 blood test done as well. Very nervous but hopeful for good results!

I also saw my neurologist and he was super impressed with how far I have come. After talking to him I am starting to come off of my Neurotin. I just want to try to come off of as many meds as I can- but stay on all naturals because I know I can't be off of everything.

So.. how have I been doing? I still have the cold and at times still very exhausted. I am able to do many more things now but then I am tired- I need breaks and a 20-40 minute nap everyday. I did also have 1 scary episode. This Friday for about an hour and 15 minutes my leg went all completely numb and tingly on me. I had trouble walking again. I did lay down and put my tens unit on me and had to calm down because as you can imagine I was a hysterical mess. I did have workout in the wellness program extra hard that week and that morning so maybe that caused something but I do not know. Maybe because I just stopped the Neurotin? I have been fine since then but I am scared that these flare ups are going to happen. Are they always going to happen?

I continue to think positive and kick Lyme Butt!!

Good News- Going back to teaching in September after missing a whole school year! I am so excited and so blessed to be able to live my life again! Thank you for all of your support and prayers.

Thank you

It has been a month since I have had to get driven to Harleysville every day for IV infusion… I look back and I cannot believe how sick I really was! It has been 2 weeks since I have been in “PT” and I have now been driving for almost a month as well ( driving pretty locally). I am walking and starting to exercise in my wellness program! I really just wanted to give a public shout out and thank y...ou to ALL who have driven me to my doctor appointments, to Harleysville (and sat with me for hours during infusion, to Physical Therapy & to run many errands. I am so blessed to have you all in my life. You are the angels that God has put on earth for me. I truly love you all!

 My family: My husband- Jon, my mommy, my daddy, my step-mom, my step-dad, my mother-in-law,my Nanny, Danielle, Brittany, Jen, Bridget, & Jason.

My Friends: Shannon Kelly, Lindsay Minton, Tim Keck, Amanda McCleery, Laura Murray, Nicole Casciello, Stacey Pizzo, Kelly Short, Tammy Smith, Barb Newell, Terry Ciotto, Joyce Scheller, Betsey Gallagher, Nicole Smith, Karen Bennett, Christina Warren, Colleen Jaxel, & Connie Wyld. Thank you to Collette Stabb for setting me up with rides- so sweet! Thank you so much to Rick Williams too- thank you for always being someone that I can talk to and for all of your support! <3 love to all

Goodbye PT- Hello Wellness Program!

So last week was my last week of Physical Therapy. August will be 1 year since I have been in Physical Therapy! Here is a picture of me that my Physical Therapist took on my last day- he even brought in a graduation cap for me!

So am I 100% better and have a perfect gait... NO.. but I am better! I am actually still going to be at the PT office still 3 days a week but instead of doing Physical Therapy, I will be doing the Wellness Program. The Wellness Program in like a medical exercise program. The Therapists will still be there to support me when needed and put me on a program but I will be more independent. :)


I am still having very bad hip, knee and back pain. My hip seems to be pulling forward and it can mess up my gait even more. I think from me sitting for 5 hours a day for months and not having any use of my right side for months kind of messed up my body. So I am continuing to work those joints and muscles kind of reteach them how they are suppose to work.


I am driving!!! I have been driving locally for the past few weeks!!! It feels great to run errands! I actually can't wait to run to the food store or get gas in the car.. my independence is almost back 100%!!! woohoo! I am hoping to try longer distances in the near future!


So I have been off the Picc for over 3 weeks now and still feeling not that well. It turns out that I now have strep throat. I guess my immune system still has trouble fighting its battles and I will get colds easier. Just another fight to fight.


I met with my integrative medicine doctor on Wednesday and the Lyme still seemed to be in remisson but my Mercury was still active so I am still fighting that off. I know it will take a while before I feel great again.. even a year- I am just being impatient I guess. I see my LLMD on the 24th!! Hoping my C6peptide result and my Western Blot result show no active Lyme!!


I am in the process of detoxing. I am drinking lemon water like crazy, Epsom salt baths, PC pills, wheat grass cubes, organic chorella pills & organic cilantro drops. Any other detox tricks from you Lymies out there? Please share! :)

Peaceout Picc!

Hi All,

Sorry I have been MIA for a few weeks now! So many things have been going on in my life. Saying Peaceout to this PIccline!!!

Soooo. The PICC is out!! The PICC came out on Wednesday, June 20, 2012!! I am very happy that I do not need to drive and sit for 5 hours a day now!! We did have a Hawaiian party at infusion! It was a fun way to say goodbye to my friend. I will truly miss the Lyme Friends that I have met. I know without their support I would not be where I am today. I pray for you all daily and hope for us to stay in touch! <3

                                            Last Bag of Vancomycin!

                                                  Saying Goodbye!!!!

So, overall since August, I had 98 Days of IV Rocephin and 70 Days of IV Vancomycin. I have 3 battlescars ( Piccline scars) and a mental scar for life. I know I will forever be a Lyme Warrior but I am hoping this girl is in remisson.

                                         My third Piccline battlescar!!!

How have I been feeling? Well Physcially.. I am doing 90% better than I was last August. No more walker, wheelchair, brace, Tens… ALL me! My gait is still off a little but not as bad as it was. I am having back/hip/knee pain on my right side. I knew I would have some problems b/c think about it? I sat for almost a year and when I did walk all of my weight was on my left side and my gait was always off. So I am not trying to get my body realigned. My hip and back are so bad. My PT has to adjust my hip every visit. My hip pulls forward causing me to have back pain. I do hip exercises daily to help the hip stay in place. I will need to keep an eye on this incase I need to see an orthopedic dr.

Mentally.. I have some good and bad days. I still have headaches and dizziness as well as ear pain. Also, at times I have confusion. I forgot how to wrap a present! I was staring at a box and wrapping paper-it was really scary how I forgot how to do this.

I am in bed sometimes and it really stinks. I feel that once I have energy and do something.. having a really good day. The next day I am bedridden paying for the day before. I guess I need to understand that just because my PICC is out I am not 100% healed. I have learned it may take up to 6 months-1 year to really feel good again. I am slowly learning this.

So overall I am just taking it easy. I am no longer on any antibiotics but I am on many supplements and Celebrex and Neurotin. I am also starting to detox. I do meet with my integrative medicine Dr. next week and my LLMD on the 24^th of July. I am hoping I do not need to be put back on oral antibiotics but I guess we will see….

I am looking forward to living my life again and feeling like “me” again.. I am praying for the day the I wake up and feel 100%!! Please friend me on FB at Samanthas LymeLife. I update that daily J