Happy 2016 😎

Happy New Year! I know- it has been a LONG time since I have written on my blog and I apologize for that. Good news- I am still in remission! I still do see my Intergrative Medicine Dr about every 6-8 weeks for check ups but all is good! Here is a quick update on me:)
February 16th we welcomed a HEALTHY beautiful baby girl named Madeline into our lives- she is our true little blessing! I did nurse her until about July when I wasn't feeling so well.. I felt Lymey ( as some of us call it) again. I did go to my Dr and I was right- it was back! Not bad bad like before but it was picked up. I stopped breastfeeding to go on medicine and also because some research has shown that the Lyme can be in the Breastmilk- is that true? I don't know at all.. But just to be safe, I stopped. After some light treatment from my Intergrative Medicine Dr I felt great again by October and am still in remission! My daughter is now 22 months old and we are expecting our 2nd baby this June 2016!! I hope that this can bring positive news to all going through this battle with Lyme. 2011& 2012 I fought to get my life back by being very aggressive on medicine, support of family and friends, staying positive and of course having faith. I am now going to be a mommy of 2 and I am a full time teacher. I say all of this to help those fighting to not give up- your dreams will come true and just show this Lyme who is boss!! You got this!! 
I can not access my FB page for some reason because I had my name under Samantha Lymelife and they now want identification ( well obviously that is not my real name so I do not have identification) so I will hopefully figure this out. Again, I'm sorry to getting back to all the emails and comments SO late! Wishing you all a happy and healthy 2016! 

Our Blessing.. 2/2014

I am so sorry that I have not written on here in such a long time! So much news to share!

First, I want to say that I am still in full remission! Yay!! I am feeling so blessed that I have not had to take any Lyme medications for a while now! I was on supplements but currently am on nothing!! It crazy to think back how many different things I was on before and now am on nothing! I see my integrative medicine Dr. every 4-6 weeks... he monitors me and all is well! Sometimes I look at my old videos and pictures and just can not believe how sick I was... Lyme stinks!!

So what is new with me now. Well, I am back to teaching my preschool disabled class! I was out of this classroom for 2 years and am so grateful that I was about to go back! I love the class that I teach.. the best part is I am able to keep up and feel like "me" again! I will say I have SI joint instability now and degenerative disc disease in my lower back all from the Lyme and how I "walked" for that year.. but I will take that over everything else!!

So the best news of all..... I am expecting a little bundle of joy!!! The baby's due date is February 14, 2014- Valentine's Day- How sweet is that! Picture above is me 11 weeks pregnant! All I can do is thank God for giving me this blessing!! I really never thought this would happen for me after have Chronic Lyme- but it did! No, I am not on antibiotics. I figured since I am in remission why would I? I would go on them if Lyme is active. Baby is healthy and all is good.. I do take prenatal vitamins daily- but that is it!!! So there really is joy and light at the end of the tunnel after this terrible battle! Stay strong and positive you will get through this too!!! God is good and will bless us! Keep fighting and Let's Raise Awareness!!

 <3 Samantha

feeling good!

Hi All!

Just wanted to give you an update! I am still in remission- yay!! I have been feeling wonderful. Yes, I have some joint pain or numbness here and there, but hey- I will take that over what I did have! I have come to learn that My Body will never be totally the way that it used to be and I have accepted that. I am so blessed to feel the way that I do now. I am back to teaching my preschool disabled class. I really couldn't have picked a better profession for myself. I am exhausted after 2 hours but its totally worth it.  I enjoy every minute with those kids and I learn something new everyday!

I want to let all of you who are fighting this terrible disease to stay positive! If you are negative I guarantee you will not get better. You need to love your body and stay positive and show this Lyme who is boss! Also, it helps you feel better mentally by staying positive. So yea you want to sleep all day- set your alarm and get up and try to do something for your self. I know- its is hard.. But with determination, positive thinking, and a good medicine concoction you will feel better- I promise!

I have made so many friends across the world by having this blog. I email with them and we talk about about experiences. It is nice to talk to others who are feeling and going through what you are. If you ever need a friend please e-mail me samanthadawn1211@gmail.com. I will listen, and give any advice that I may be able to give.

Thinking of all my Lymies and Let's Raise Awareness!! ((HUGS))

mini interview

In May 2012 I did an interview with Clearview Regional High School About Lyme Disease. I just got the video sent to me. It is short but gets to the point. In this video I am still very sick with my piccline still in ( I am wearing a brown piccline cover over it), Bells Palsy, and lots of weight gain.... Here is the video: Let's Raise Awareness!!

Thanks Pine Hill School District!

The Bean Goes Green in May for Lyme Disease Awareness Month!!! Thank you so much to the Pine Hill School District for all of of your love and support! I am so lucky to work with such a great group of people! ( This is a picture of the Staff at the Dr. Albert Bean School, where I teach. I am the one in the middle holding the sign.)

                       My superintendent came to show his support as well! Thank you Dr. Koczur!
I decorated the school office, handed out ribbons, and Lyme Disease brochures! Let's Raise Awareness!

May- Lyme Disease Awareness Month!!!

        MAY: Lyme Disease Awareness Month!

Raising Awareness for this horrible disease is very important. Here are a few ways that you can help:

"Samantha’s Project” Turn your porch light green for the month of May! Help spread awareness by replacing your porch or outdoor lights with a green bulb. It’s fun, easy and a cheap way to bring attention to this nasty disease!

* Wear lime green the month of May : Shirts, ribbons,bracelets, headbands, NAIL POLISH..etc.

* Tie lime green ribbons around poles and trees

 * Hand out Lyme Disease info cards: www.lymediseaseassociation.org under resources

* Share on social networks to check for ticks and help educate about Lyme Disease

 ** To prevent Lyme Disease check for ticks daily**

 

I will be adding information about Lyme Disease throughout the month of May.

To read my story please start from the beginning of this blog : Feb 2011 (I was diagnoised in August 2011) Thank you for reading and Let's Raise Awareness!!!

Looking Good :)

I went to my Integrative Medicine Doctor this week and had him test me for EVERYTHING! Everything I always tested positive for last January 2012.

Good News: My Lyme is still gone- non active! I couldn't be happier!! Hoping to stay in remission forever! He said that if it did come back he is confident that my immune system would be able to fight it off. Yay! All negative for the co-infections I had, Parasites, metals, mold! I got a good report.

The only thing that he did find was that I had an Iodine Deficiency? I was very confused about that. I did look it up ( Google) and read about it. It seems that it is common but you should take some supplements if you are on it.

So as of right now I am taking supplements for that and Vitamin D. THAT IS IT! I feel like I went from 30 pills a day to 2.. crazy!

The Spring is here and Summer is near.. Please continue to check yourself, your children and pets for Ticks. DAILY! This disease can change your life in a flash. Also, remember, May is Lyme Awareness month. Get those green light bulbs for your porch, wear some lime green clothes and nail polish, educate others!

Let's Raise Awareness!!!

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 

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

i am runninnnggggg

Hi all. I am sorry that I haven't posted in the past few weeks. I have had so much going on... and Yes, my Piccline is out! yay!!! I will post about that this weekend. Here is a video of me running in Physical Therapy last week... my gait is still off and when I run my right leg turns in a little. I am having back and hip problems and my knee bothers me as well. I am SOO happy that I am walking that I will deal with the pain. :) I feel as if I almost have my life back... I am about  80-85% there!! :)

REMISSION???!!!!

So I got some great news today… My Piccline is coming out next Wednesday, June 20^th!!  As I mentioned on my previous post my 60 days on IV Rcocephin and IV Vancomycin was on Wednesday, June 6. After talking with my LLMD he wanted to extend me 30 more days on intravenous meds. His reason being that I am not 100% “me” again. Yes, I still have headaches, dizziness (which causes me to be nauseous), fatigue, joint pain, & neuropathy.. but I have definitely made improvements! I am now walking on my own, started reading books again, on the computer more, have better conversations, able to plan events.. etc.

I feel that part of me being sick has to do with the medicines that I am on. I was on 28 days of IV antibiotics in Aug/Sept. then on 70 days from March until present.. that is almost 100 days on IV antibiotics. On top on the IV meds. I am on oral azithromycin, Ceftin, Flaygl ( then switched to Tindamax), Duflucan, Neurotin, Celebrex, asprin, Samento, Banderyol..Plus many supplements. Overall, I personally think that my body needs a break. I have had blood clots, phlebitis and just want this picc out! Also, who knows the long term effects that my body may have from being on all of these antibiotics? I do have blood work done every Tuesday- overall everything comes back great! But sometimes I have had low red blood cells, high white blood cells.. overall it is just scary that we have to take all of these meds to get better but it could be damaging parts of our body. There is not one specific treatment plan that everyone should follow for Lyme Disease- everyone is different and should have different plans depending on their symptoms. Some people many only need 28 days (which I know that MOST need more- especially for Chronic Lyme) and I think every patient needs to be on a concoction of medications for to get to remission. I am grateful for the doctors that I have found –they were very aggressive!

So today I also met with my integrative medicine doctor.. and this was the FIRST time since I started going to him that he found that ALL my co-infections and my Lyme were cleared.. so that means he found that I am in REMISSION!!! Yay!! Finally!!!! It was wonderful news!!! I am actually in shock- b/c I do not feel 100%..

100%??? So after talking to my LLMD and my integrative medicine doctor it will take about 1-6 months for me to really see a difference. Once I am off these abx I will probably feel like poop and may get sick again.. Well, think about it.. my body is so use to being on abx that it has to learn to fight for itself again. I have been working on building up my immune system so hopefully it will pick up right away… only time will tell.

So.. here is goes… Next Wednesday we will see if I kicked this Lyme to the curb! Will I be “cured” sadly, NO.  I have Chronic Lyme Meningitis.. FOREVER… I will be in “remission” Could the Lyme become active again? Oh yes.. so what can I do to hopefully prevent this? I am going to start detoxing next week by taking pills, baths, drinks.. we will see. Also, eating healthy and exercising. Now that I am able to walk somewhat again.. I need to push myself. I can do it—I know it!

Sadly, right now I have had the worst back pain, hip pain, pelvis pain. I found that since my body was at rest for so long and now I am walking again my pelvis is off alignment and it is causing pain. I am going to talk to my PT tomorrow to discuss going to a chiropractor. This pain is terrible and is not helping the other pain that I am having… so we will see.

So I am going to be positive.. stopping antibiotics and helping my body heal naturally.. Hopefully stopping sooner than later will be a good thing for me.. Prayers are welcomed! I am hoping to go back to teaching preschool disabled in the September- I miss my class, I miss my life… here is to my new life & being grateful for the good days and dealing with the flare ups.. I will be patient & have accepted and that this is my new life- I hope all my family/friends can accept it and be patient too..  Thank you for ALL of your support.. I am blessed <3