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!!!