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 

thank goodness Tindamax is done today!!

Didn't feel too well to type so here is a blog video of me today. Thanks for all of your support and Let's Raise Awareness!! :)

feeling better.. but am I?

So, I am still not sure of the extension. I will have been on IV antibiotics for a total of 90 days. I just think that I need to give my body a rest and see what it can fight on its own. I think I will stick with bee venom and naturals but still unsure about the IV antibiotics.


I am doing so much better with my walking though!! I walked home 4 blocks from beach, walked a little on the boardwalk, and walked on the beach all with NO assistive device! Yes, my gait is still off but I am doing much much better! I tried walking on treadmill today and could only do speed .5… it is tough walking on a moving surface!! But I have been walking and practicing dribbling a ball at the same time and am doing OK but it is good for me to multitask and get my brain moving! 


I do feel better but still not me. I know it won’t happen over night but in August I will be fighting this (well since I have been diagnosed) for a year.. So I am hoping in August I will start to feel a little better. 


This Friday, my old high school, Clearview Regional HS, will be doing an interview on me for Lyme Disease. I am happy that I can help raise awareness to the high school students. It will be posted on the school news as well as the local channel.. Let’s Raise Awareness!! 

Extension…grrrr.. uggggghhh

So I am around day 50 on my IV treatment and I am suppose to have 60 days total of rocephin and vancomycin… am I feeling better- yes, I am. I would say that I have better than I did 2 months ago. Can I pretty much walk independently- Yes! That is the most positive thing happening.. but how do I feel.. POOPY!


I still feel very fatigued, brain fog, dizziness/headaches, ear pain. Is any of that better- Some days.. definitely! But most days.. no. I will say that I am having some weekends when I feel GREAT! This past weekend I went to a craft fair, the Phillies game, a friends house. It was amazing to be able to go out and not be a bump on a log on the couch.


I am VERY thankful and grateful to be able to walk again but I also want to be feeling well too. I am on the Tindamax- two 500mg daily.. on top of everything else. As well as the Samento and Banderol Drops. I would say this week I am just tired and my body aches and my head is the worst.. I actually have been writing this for a while and have to keep breaking b/c the computer screen is too much for me to handle.


So.. I meet with my LLMD every week (well sometimes the PA at the LLMD office) they were asking me about my symptoms and all… they said I may need to be extended! I am not looking forward to sitting at the doctors everyday for infusion any longer!! This is my 2nd round of IV antibiotics but the first time I only had 28 days. I just wish I knew what I needed to do.. is 2 weeks enough extension.?? I even heard 30 days!?? NOOO!  I just think I want to see if my body can fight this nasty disease off on its own. 


Any other Lymies: Should I try azithromycin IV?? I do take it orally? Should I stay with rocephin and vancomycin? Just looking for some opinions.


Tomorrow, I meet with my integrative medicine doctor and get the bee venom shots and acupuncture…  I wonder if I can just continue treatment through holistic medicine. Hoping I hear good news tomorrow.. I am just feeling pretty yucky but again super happy about my walking!


So today in PT- the therapist, Steph, had me dribble a basketball and walk at the same time. Wow! I never realized how much I am telling my brain “heal,tow,heal,toe” as I am walking. As soon as I had to concentrate on the ball dibbling my foot began to drag. I was so upset. I stopped and we practiced heal/toe walks and then I tried again and it was better.. but yes- I had to say aloud heal/toe. It is just crazy how your brain works. Before this disease I would never have to think about what I was doing physically. Now, The whole time I am walking I have to repeat in my head what to do- it is just crazy what a tick can do!


I am determined to be running and dribbling one day.. it will happen ;)  I will keep you posed

walkingggggg :)

Playing Twister in PT. This is something that I would have not even been close to be able to do.. bending down, getting up, listening to where my hands and feet go and being able to follow through.. This is such a big deal to me and hopefully a good sign that I will be back to teaching by September!! :)

No Tens, No Brace.. yay!!! I have been able to walk short distances with out either (into resturants, stores, doctors office, etc.) I have been using my Tens to walk long distances ( shopping, walking at the park or boardwalk).. I think that by the time summer comes.. I will be walking with nothing!!! I do need to wear sneakers or flats- flip flops are just so much work right now... but hey.. I will talk it :)

May is Lyme Disease Awareness Month

Me and My Lymies getting our treatment and wearing our lime green to help raise Lyme Disease Awareness!!!

Good bye brace.. almost :)

So even though I have been SO sick lately I am doing much better with my walking!! I honestly think it is a combination of things: IV meds, oral meds, bee venom shot & most importantly the Tens Unit. My therapist is the best. He is one of the most caring therapist a person could have. Without all of his help and support I know I would not be walking like I am today.. or even typing this post!  Thank you Mike ( Victory Physical Therapy-Mullica Hill, NJ) for ALL that you do!!

This is me walking with the tens unit on. I have the electrodes on the heel and bottom of my right foot. I then run the wire up my right leg and an able to control them with the unit. This helps sends signals to my brain saying “ hey, here’s your foot.. now walk!” J My foot does pretty well with my dorsiflexion using the tens! YayI went from a walker/wheechair in late summer/fall to this now! yay!:

This is me walking with.. NOTHING!! That is right.. nothing!! The tens unit lets me have a good carry over! I think about 1200 ft!! I am moving in the right direction!!

May- Lyme Awareness Month

"Samantha's Project"

Turn your Porchlight Green for May!

May is Lyme Disease Awareness Month. 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. Plus it’s easy to do for those who are sick at home and can't do the higher functioning awareness ideas! And remember even if you don’t have a porch, you can help just by sharing this page you will be getting others to do it!!

Please also visit : WhatisLyme.com for other ideas such as green ribons, wearing lime green, or making tick cards on zazzle.com. WhatisLyme.com has other great resources and important information about Lyme Disease.

Brain Spect Scan

So on April 3, I went to the hospital to have a Brain Spect Scan done. The doctor ordered this to see exactly what or if anything was happening in my brain that MRI’s or Cat Scans would not pick up. We assumed I had the Lyme in my brain since I am having trouble walking, neuropathy, using my right hand/arm at times, thinking, coming up with words, talking, balance, reaction times, etc…Well the results came in and things were found.


Yes, I was upset to see that I did indeed have trouble in my brain but to see it on paper really is scary. Overall I am not having blood flow or if so low blood flow to certain areas of my brain. The final report states:
 Findings: The largest perfusion abnormalities identified are as follows:


Right Cerebral Hemisphere:
Large Temporal lobe perfusion defect
Posterior parietal/occipital perfusion defect


Left Cerebral Hemisphere:
Posterior parietal perfusion
Paramidline frontal hypoperfusion


A midline cerebellar defect is also appreciable.


Impression: Bilateral cerebral white matter perfusion abnormalities and one midline cerebellar defect.


So these were my findings.. whatever they meant! From what I understood from my doctor again is lack of blood flow or oxygen flow to brain causing me to have these neurological deficits. The midline cerebellar I believe is where the balance issues are. So I think that these parts of my brain are gone so I am retaching other parts of my brain how to do things that the parts that are affected use to do.


I am not sure if I am making sense or if I am even correct… I am trying to continue to research these findings or talk to my doctor about them again. He says one things to me and I forget it 2 secondds later.. us Lymies call it “Lyme Brain or fog”. If anyone has any input and can explain this to me better.. that would be great!


Flagyl- I did speak to him abut me herxing so bad so instead of 2- 500mg pills daily I am to take ½ of a 500mg pill daily ( so 250mg daily) whew… that Flagyl is crazy strong!! 


Thanks for reading and please continue to raise awareness!

Herxing.. the good/bad thing...

This is a picture of my at infusion. I was feeling so sick from the "Herx"  that I just wanted to sit in the quiet kid room..

I have been SO sick this week. I am now having a Herxheimer Reaction also known as Herxing (“The Jarisch-Herxheimer Reaction, or more commonly knows as ”herx,” is a detoxification reaction your body has from die off of bacteria. It is the worsening of symtpoms before getting better. As the body detoxifies, or tried to get rid of dead bacteria and toxins, it is not uncommon to experience flu-like symptoms including headache, joint and muscle pain, body aches, sore throat, general malaise, sweating, chills, fever, nausea or other symptoms. This is a normal reaction when starting a treatment for Lyme Disease , Syphillis, or Candida, and some other infections. It indicates that parasites, fungus, viruses, bacteria or other pathogens are being effectively killed off.The Herxheimer Reaction is an immune system reaction to the toxins that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough. Simply stated, it is a reaction that occurs when the body is detoxifying and the released toxins,(endotoxins) released from the cell walls of dying bacteria due to effective treatment, either exacerbate the symptoms being treated or create new symptoms. The important thing to note is that worsening symptoms do not indicate failure of the treatment in question; in fact, usually just the opposite”)…

I have been so nauseous, headaches, ear pain, ear pressure, joint pain, pain all over.. it is terrible… it is just when is too much of a “bad” thing a :good” thing?

Last Friday, April, 6 I went to the neurologist. He said I have made major improvement with my arm and leg since August. I know with all the physical therapy & medications I am hoping to be better soon with walking! He also took me off of the Elavil and lowered my Neurotin to 400mg 2x a day from 600mg 2x a day. I don’t see him again until July and I am now out of work until July as well. So yes, I missed the entire 2011-2012 school year :(

Tuesday, I started a new medication called Flagyl. I was told that I may feel a little nauseous on this medicine…. Well a little.. umm try a WHOLE LOT! I was told to take 2-500mg pills daily for 14 days. Break for 2 weeks then start back up for 3 weeks (this is an addition to my other medications and supplements). I have been so sick it is crazy. As mentioned earlier I am guessing that I am “Herxing”.  I am so nauseous that I can’t even be around food, my head and ears have so much pressure that I feel someone is squeezing my head together, I am pretty much seeing double, head is pounding, pains everywhere, and now a lump formed behind my ear ( I am guessing it is a lymph node) . The pain was so bad yesterday ( Saturday, 4/14/12) that I made a house call to my doctor and told him I can’t take the pill, I feel like I need to go to the hospital. So he told me to stop for the day and to try one pill for tomorrow (meaning today). Well the rest of the day yesterday I was sick and I woke up terrible this morning and decided not to take a pill. I will meet with him tomorrow. I am feeling a little better since I am able to write this but this is now 2 days off and I am still feeling terrible. I did take a detox bath today with only epsom salts and hydrogen peroxide as well as drank 8 glasses of water with lemon, I read this will help detoxing and getting rid of the toxins.  I can not wait to beat this disease!!!!!!!! 

I will meet with the doctor tomorrow and hopefully find out what I can do. I may just need to accept the “herx” in order to get better. I am trying but it is the worst!!!

I did see my integrative medicine doctor on Wednesday and I did get the bee venom injected into my brain and lower back. I also had the auto-sangris therapy as well. He tested me and said that my Lyme, co-infections & metals look like they are getting better but I still have a way to go. We will see! He also did acupuncture and place some needles in my head and pin pointed the nerve damage of my leg. I was able to lift my foot (dorsiflexion) better than I can without the needles. That just helped give me hope for 100% recovery to walk again.

I know this treatment is going to be rough and I refuse to give up. Lyme is a scary disease and we really need to raise awareness of what it can do. Thanks to Dr. Phil for putting it on his show and help raise awareness! Please continue to share and discuss this disease so we can get all of the doctors on the same page to treat those living with Lyme. Let’s Raise Awareness! <3 

Clots, Asthma & Flagyl.. OH MY!

I am so determined to beat this disease! I am so over it.. and I will not give up!


I feel like I am living the movie Groundhog’s Day- everyday is pretty much the same.. over and over again. Therapy, doctors, infusion, doctors ( maybe not in this order but pretty close) overall if is just crazy what a tick can really do to your life. That is why I am trying to help raise awareness- Lyme Disease is no joke!


Well, I met with my LLMD and he ordered another ultrasound to check on the blood clot. The blood clot moved- It is moving up my arm. It is a superficial clot, which is not as dangerous as a deep clot (Thank goodness), but still it is in my body where the original Piccline was that needed to get pulled due to the clot. So I was a little panicked yesterday and they had me go to the ER ( I also had a brain spec scan done to determine where in my brain the Lyme is- I will let you know what the doctor says about that when I know). The ER checked my lungs and they found that my asthma was flared up and I needed to be on nebulizer treatments now. 


Now, those of you who really know me know that I had REALLY bad asthma in middle and high school- which I thought I had outgrown. I am guess that all the medications, stress, Lyme- it is all causing my asthma to flare up. Overall, I am very thankful that this blood clot is stable and it is not in my lungs!


So my doctor is starting me on another antibiotic called Flagyl. I will continue with everything else I am on and add this to the list. He told me that I am most likely going to get sick ( worse than I am) and if I try to drink any kind of alcohol I will be throwing up in a corner wanting to never wake up. Has anyone else ever been on this? Any advice?? 


Thanks everyone for reading my blog! Continue to check yourself for ticks and please raise awareness! <3 

BOO to blood clots!

So last Thursday night I was complaining that my arm hurt. The pain was directly under the piccline- it felt like I had a big sore bruise. I ended up ignoring it and I went to sleep (well the best that I could).


Friday morning my friend, Tammy, offered to drive me to my infusion, which of course I was excited and thankful about. As I was getting my infusion I told Tammy that my arm was hurting me.  The nurse heard me and said that I needed to tell him these things and he went and told the Practitioners Assistant that was in the office. She gave me a script and told me just to be safe to go and get an ultrasound. 


I wasn’t really that worried but just wanted to go to be safe to rule things out. Tammy called and got me an appt. at a radiology place right after my infusion. When I went back for the ultrasound I was telling the technician where my arm hurt. She then began the ultrasound. So I am watching her face as she is taking the ultrasound and I could tell that she saw something. She wanted to take off my dressing to see more of the arm but I told her couldn’t unless she had another dressing to put on. She then told me to wait here and she wanted to talk to the radiologist. 


Now I was scared! How you ever been to a place to get an xray or ultrasound and the tech leaves to talk to the radiologist? I know I haven’t before this! As they tell me to wait I am about to cry. I run out to the waiting room to get my friend who was very calm because I sure was not! 


They were trying to get a hold of my doctor which they could not so the radiologist had me in his office to explain what was going on… he said I had a blood clot and I needed to go to the Emergency Room!


Now, I knew it wasn’t “that” serious because my friend could just drive me there and I didn’t need an ambulance but….. I was scared. The radiologist called over to the ER for me and off we went. Tammy stayed with me until my parents and husband came. (I’m guessing Tammy didn’t think that by offering to drive me to infusion she would be in for a suspenseful day! Thank you SO much for all of your help and support Tammy! You’re the best!)


The ER doctor looked at the film and called my doctor. They decided that the Piccline needed to be pulled. So I only had the line in about 2 weeks! Of course I was upset because I knew that I still needed to receive IV antibiotics and that I would have to go through getting another Piccline. This is not the most fun thing to get done… but I know things could be worse.


The ER Doctor pulled the Picc and I went to have a second ultrasound done. They found the clot was bigger and it was in the vein that the Piccline was in- Thank goodness I felt the pain, they found the clot and pulled the line! I am lucky that the clot was not that deep or I would have been in trouble. 


My directions are to heat the arm a few times a day as well as take aspirin once a day to help thin the blood.


Today, I went to have my THIRD piccline put in and unfortunately it had to be put into my right arm since the left arm had the blood clot. When I first had a piccline in September it was in my right arm but my right arm wasn’t very mobile at the time and I was just starting OT/PT. I have been working hard in OT/PT and now that the piccline is in my right arm I can’t do the strengthening that I was doing- I am pretty upset about that.


So my new piccline was put in today.. it is what it is. I just hope this one is and lasts me until June…. So fingers crossed!

a GREAT day for a WALK!

So last Thursday in physical therapy was- AWESOME! 


Mike, my PT, thought of trying to put tens electrodes on the bottom on my foot. He placed then on the bottom of my heel and under my arch.


The Tens sends “vibrations” to my brain telling my brain where my foot is and that it needs to walk! The pads stick to the bottom of my bare foot. I then am able to stick my foot into the shoe (without my brace) wires then go up my leg to a controller then I chose which frequency I need my foot to feel in order to walk. 


I found this picture online to what the Tens electrodes look like:

This is a video of my walking. You can see when I start the controller on my pants. I am SOOO Happy! This is giving me so much to look forward too! Flip Flops here I come ( hopefully- sooner than later )

and getting "stung" by a bee....

So last Wednesday I had my appt. with the integrative medicine doctor. He went over how many of my co-infections are still testing positive (mycoplasma, bartonella, babesiosa). He also talked about how my nerves were still numb and tingling (especially since my Bells Palsy came back about 3 weeks ago).


I did do the autosanguis therapy as well as acupuncture. I have to say that I am not noticing if the acupuncture is working and I think it is mostly because I have trouble relaxing. He did place the needles in my face where the Bells was so we will see. (My Bells Palsy does look a lot better than it did but it still feels tight on my face)


He then discussed injecting me with Bee Venom. I seriously thought that he was going to stick me in a room with 100 bees stinging me. He said that this is a therapy used for many people with chronic illnesses such as MS. And no.. he does not sting me with a real bee but the venom is in a needle that get injected into me. 


He tested the back of my neck and arm to see if I was allergic-which I wasn’t. So this Wednesday I am going to go and have the Bee Venom injected into my head (closer to my brain since the Lyme is in my brain) I will keep you posted to see if the bee venom works. Let me know if you have ever had bee venom injected or have heard of this- I would love to hear some feed back 

this poem says it all....

I came across this poem on another Lyme fighters facebook page. This poem says it all  and I wanted to share :)


While from the outside I may seem normal,
It’s the part that you can’t see,
The constant pain and struggles within,
Are ever so apparent to me.
~
Although I may wear a smile,
Often times it's covering the tears,
Yet not tears because of sadness,
As it often may appear.
~
Don’t be too quick to judge though,
Because there is so much more than is known,
What may seem to look like one thing,
Just might turn to prove so wrong.
~
I may sometimes seem unfriendly,
Or too centered around self,
Because sometimes standing takes all I’ve got,
And there is just no energy left.
~
Sometimes my words may sound awkward,
My communication may not always convey,
My true inner thoughts and feelings,
Aren’t always expressed by what I say.
~
You may think that I’m not really listening,
Sometimes my face or speech may not show,
But I do hear every word you say,
I really want you to know.
~
The information doesn’t always process,
As quickly and as clear,
And sometimes it takes me longer,
To interpret what I hear.
~
I possibly miss many opportunities,
To offer needed love or support,
Because sometimes it just takes to long,
For my thoughts and words to sort.
~
So if my actions seem inappropriate,
In the things I say or do,
I hope that you can understand,
That it is not because of you.
~
There are times I get discouraged,
When forced to accept my inability--
It’s hard to admit my limitations,
And it leaves me feeling so guilty.
~
Yet every moment is a reminder
As I look all around,
The effort it takes just to get through the day,
Just picking my feet up off the ground.
~
I am not looking to find pity,
I am just attempting to explain,
That the person that you may often see,
And the real me aren’t exactly the same.
~
You may not see the peace and joy,
When you look upon my face,
But I know that each day I live,
Is because of God’s amazing grace.
~
It is hard to always be cheerful,
When the pain is so very real,
And not everyone can comprehend,
The extend of how I feel.
~
I don’t see it as all bad though,
Although I’d much rather it not be so,
But I know that if I must endure,
God will strengthen me as I go.
~
It may seem as if I take no pride
In the way that I look or dress,
However, there might be much more going on,
Inside of the big mess.
~
My home may not be nice and neat,
My bed not always made,
The laundry may not all be done,
And often it makes me ashamed.
~
But I must only do what I am able,
Each day I have to choose,
What is most important right then,
And the tasks I am able to lose.
~
All the plans and dreams I once held,
Now don’t seem quite so clear,
Yet I feel a peace within,
As my Lord keeps drawing me near.
~
To have a chronic illness,
Or a disability that one must bear,
Somehow puts life into perspective,
And helps to make us more aware.
~
I realize now that each day I live,
Is a gift from God above,
It is hard not to lean on Him,
Or to look to His great love.
~
I now can fully understand,
On my own, there is nothing I can do,
It is only be faith and prayer,
That I can make it through.
~
It may seem an exaggeration,
No one can always feel so bad,
But only those who have walked in these shoes,
Can appreciate the battles that I have had.
~
I see so many people less fortunate than me,
Don’t have to look very far,
There are so many suffering all around,
It doesn’t matter who you are.
~
Circumstances and illnesses can hit unexpectedly,
And you can never really be prepared,
It may be difficult to understand,
Leaving you vulnerable and feeling scared.
~
I must constantly guard my thoughts and mind,
As Satan always tries to bring me down,
He wants me to feel hopeless and unworthy,
And turn my smile into a frown.
~
It is hard not to get depressed,
When I see the burden my family must bare,
The fact I cannot always meet their needs,
No one could be more aware.
~
There are times I feel like giving up,
When I look too far ahead,
But I know if my loved ones were given the choice,
They would just choose to have me here instead.
~
There are so many ups and downs,
New challenges each day,
I must strive to keep my eyes on God,
So that I be not led astray.
~
It would be so difficult to cope,
Without God, my hope would all be gone,
Because through submitting to Him in prayer,
Is when my weaknesses are made strong.
~
So when you see the way I look,
When my insecurities are in view,
Base who I am on what’s inside,
Not by the things that I can do.
~
The greatest lesson that I have ever learned,
Is the reason that I am here on earth,
Is not to live for self and gain,
For in these things are not my worth.
~
God has a purpose for my life,
Although the details I may not see,
He still has it under control,
And is continually watching over me.
~
Maybe one day I will be well,
And my health He will restore,
But if that is not in God’s will,
I will still praise Him ever more.
~
If this suffering can bring honor to Him,
I will gladly accept the call,
Because of His great love for me,
He suffered and gave His all.
~
I have to believe that what I am going through now,
Will somehow work together for good,
And one day it will be revealed,
And all things will be understood.
~
While I still worry about what you think,
More the example that I may show,
I am learning so much more each day,
And this has really helped me to grow.
~
By: Mary Hastings, Written May 2003

5 down- 55 to go……

Today was the 5th day of my infusion  only 55 more weekdays to go….and boy have I been sick.
The average that my infusion is taking is between 4-6 hours ( daily) and I have to drive ( well be a passenger) an hour there and back.. It is just taking a toll on me but I can’t wait to feel better! I am so appreciative of all the people that have taken me this week and stay there to support me while getting the infusion.. much love and thanks to my mom, my stepmother, my husband & stepfather.


I am doing pretty well when taking the Rocephin (I was on this before for 28 days intravenously but the doctors pulled the Picc and that is why I am not better).  So you wonder why they pulled the Piccline before?  Well because the IDSA guidelines state that Lyme Disease patients should all be treated the same. Doctors need to realize that they can’t just treat everyone by the guidelines and that they need to treat the Lyme by the patient. Everyone has different symptoms and need different antibiotics. It is important that you find a doctor a (LLMD) to treat you for your symptoms and how the Lyme has infected you.


I am also taking Vancomycin. This antibiotic is the one that has been making me pretty sick. High blood pressure, heart beating fast, nausea, dizziness. They had to slow the drip- just this one antibiotic alone has been dripping for about 3-5 hours a day. The doctor explained that this helps push the Rocephin into my brain faster and harder.. so we will see!


When I met with the Doctor she wrote me a script to get a Brain Spec Scan- she said that the Lyme is definitely in my brain and this will show how it is affecting my brain. I am anxious to see the results in the beginning of this treatment and compare it to the end of treatment.


The doctor also discussed my blood work and how all my tests are all positive and reactive. It is important to know that I consider myself “ one of the lucky ones”. I know that I have had a few Drs. misdiagnose me but most of the others getting infusion tested negative for some of their blood work. It is important to know the symptoms that Lyme can cause and continue to retest or try to start treatment. 


The way the test to find Lyme is not to test really for the bacteria itself but to test for the antibodies that the body will produce to try and fight the disease. My body was just fighting too many other things such as the mold, metals, and co-infections that my Lyme was winning..


So here I am beginning my treatment yet again about 7 months after I was diagnosed. I am hoping for the best and am staying as positive as I can.. sick and all  Thanks for all of your support and please continue to RASIE AWARENESS.. and also to treat your lawn for ticks and to get frontline for your pets to help prevent Lyme.