1 year since my 2nd round of IV!

I am so sorry that I have not been writing on here since the end of December but since then I have seen my Doctors. I have been to both my LLMD and my Integrative Medicine Dr. and I have been testing negative to active Lyme!! I have been negative since June 2012… so I couldn’t be happier.

 In January 2013 I saw them both and here were my results:  When I first started in January 2012 my c6peptide number was at 1.88(anything above .91 means that you have active Lyme in your system). My number now is at .62 so that was great news to hear!!!

But my CD57 number was too low... Low for this can be bad. The number should be between 60 and 360. My number is 27. So what this means is that my immune system is very compromised.  The other thing about this number being low is that I could relapse with the Lyme. I have been getting pretty sick a lot. I am actually home now with Strep Throat and have had a 102 fever on and off for 4 days. Overall, I am just hoping that my body can continue to fight this. With all the supplements and vitamins that I have been putting into my body I will only be able to continue to get stronger. Today- March 13 I am 9 months in remission!! J

Today- March 13 is exactly one year from when I started my second long term round of IV and Oral Antibiotics. If you look back on this day on my blog you can read how I was dealing with my active Lyme then- it was not good. I have really come a long way and I am forever grateful for that. thing about this number being low is that it means I could relapse with the Lyme. I have been getting sick a lot. I am hoping that my body can continue to fight this Lyme and once I put some supplants in me that my immune system will get stronger. I do feel week. So overall still happy - NO ACTIVE Lyme!! 7 months in remission!!!! thing about this number being low is that it means I could relapse with the Lyme. I have been getting sick a lot. I am hoping that my body can continue to fight this Lyme and once I put some supplants in me that my immune system will get stronger. I do feel week. So overall still happy - NO ACTIVE Lyme!! 7 months in remission!!!! Thanks for all of the support

What am I still dealing with? Well, I still have numbness/coldness on my right side. It has gotten better but it is still there. Nerve damage takes forever to heal so I am just trying to be patient. I have been experiencing really bad hip pain though and other joint pains. I have had manipulation done to help and I also continue to go to my wellness program at my PT. But from everything that I had if I am left with hip pain and numbness I would say I am lucky.

 I will continue to write on here and I am sorry that I have not been for a few months. I do update on my Facebook page daily/weekly you can friend me on Facebook at : Samanthas Lymelife. Or you can always email me at Samanthadawn1211@gmail.com. Thanks for all of your support and let’s continue to raise awareness.

                                             ** May is Lyme Disease Awareness Month**thing about this number being low is that it means I could relapse with the Lyme. I have been getting sick a lot. I am hoping that my body can continue to fight this Lyme and once I put some supplants in me that my immune system will get stronger. I do feel week. So overall still happy - NO ACTIVE Lyme!! 7 months in remission!!!!

looking forward to 2013 :)

I hope all of my lymies and others had a wonderful holiday!!

I can't help but think about this past year of my life.. WOW!

a year ago from today I was in so much pain, not walking, numb, and so confused as to why my body was like this. So confused as to why I couldn't find a doctor to treat CHRONIC Lyme. It was around this time with the help of my Dad that we found 2 Lyme doctors. A LLMD ( Lyme Literate Medical Dr) and an Integrative Medicine Dr. My first visit to them both was in January 2012...

So here we are 3 picclines,  a dozen natural medications, and quite a view oral antibiotics later - on top of Physical Therapy and lots of rest and prayer ( read my entire blog for a list of all medications)... but a year later...

I am a full time special education teacher who can:  run errands, WALK,  drive, plan parties, attend parties, stay out late and wake up early the next morning, live my life again with my husband! So I am telling you all of this for those of you who are where I was last year- this time last year I was searching for blogs, for doctors, for HELP!

I will tell you this... I will always have Lyme Disease and I am OK with that. It is now a part of me and it has made me the person that I am today. I know that I will never let it win and take over my body again. EVER! If you are someone fighting this disease now you need to stay positive!! POSITIVE POSITIVE POSITIVE! I know with me telling my body out loud that we will fight this and me believing that I will be better has helped me get better. You need to surround yourself with people who will be by your side and fight for you- surround yourself with love- it helps!

Please email me if you ever need to talk or need a friend for help or to listen. Samanthadawn1211@gmail.com

Looking forward to the new year so that I can put all of the pain behind me. I know good things will happen to me this year!

Praying and wishing all of my Lymies a Happy and HEALTHY 2013!! xo

Me Now- 5 months in remission!!

Me and my husband (my heart) I wanted to post pictures of what I look like now that I have been in remisson.. Out at weddings, dressed up and dancing!! I hope this can give hope to others who were pretty much in bed and unable to walk.. Keep Fighting!!! Let's Raise Awareness!

thankful.....

It has been awhile since I have written on my blog. Since September I have been super busy with weddings, bridal showers, parties, teaching.. etc.. But you know what... IT IS A GOOD THING! Last year at this time I was trying to walk and use my right arm again, read a book, and control my pain. So I will take the stress of being busy any day of the week... it actually feels good to be part of something all the time. Though I am mentally and physically exhausted, I would say that it is good for me- if that makes sense…

 

So how am I doing?? Well, compared to last year I would say that I am 85% better!! My brain has been a lot clearer over the past few months. I am sure working is helping that… My right leg and arm- consonantly numb... I guess it will always be?? It is has been numb and ice cold for over a year now. It is uncomfortable but not painful just annoying really. But... my back is terrible. I just recently had an MRI done. They found degenerated disc disease prominently in my L4 & L5 along with SI instability.  I continue to go to PT (I have been with my PT, Mike, since last September- he is great and is always helping me with what I need.. all the PT’s there do!!) every time I go I need my hip adjusted. Mike things this whole back thing is mechanical for how I walked and sat for so long. So I am hoping with all of my PT and exercises the pain will eventually go away. So we will see!

 As for my Lyme… this month I have been 5 months LYME FREE!! (Well for active Lyme of course- I will always have Chronic Lyme Disease.) I am truly so happy that my body is continuing to fight this battle without tons of antibiotics! I continue to take supplements and vitamins but that is it!! I still can’t believe how much stuff I was taking at one time. I do not go back to my LLMD until January where I will get my CD57 number and PCR number... I think I may even get a new western blot test done. So here is to hoping all stays well.

 

I continue to have hope and pray for myself and all the other people suffering with Lyme. Am I the same girl that I was prior to Lyme? NO. I am not that girl... But I am the new me and I like this me too. I definitely have a different perspective on life and I am grateful that I am walking, driving, teaching and being able to hang out. I just may get tired faster or have joint pain.. but hey.. I will take that over last year any day.. I promise to not stay away so long like last time. I hope everyone had a wonderful Thanksgiving and thought about what they were thankful for.. I know I sure did.

 

Let’s Raise Awareness!

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