Therapy videos- taken on 2/27/12

This is a video of me picking up a 4lb ball. This was something I had so much trouble with- picking something up/stooping. I am doing so much better with this and I am happy with my improvement. 

This is a video of me walking without my brace but hand holding with my therapist, Mike. I also am still wearing the belt for safety. As you can see I need to look down at my foot for me to tell my brain to help me walk. 

This is me walking with my therapist Mike holding onto the belt. I tend to clasp my hands together to help keep balance and I think it is a comfort thing. He doesn't want me to do this because this is not how people tend to walk in society but my  hands just go together...

This is me walking with my hands by my side. This is very hard for me to do right now. Mike is still holding on but I just have trouble walking with my hands to my side. I don't feel safe or something. My brain is just not accepting it at this time. 

not feeling too hot...

Sorry I haven’t written any posts lately. I have noticed that my brain has just not been working with me. At times when I go to write things and then I reread it I am like what the heck is going on! 
Anyway, I just have not been feeling that well. I know that I have seen improvement since August when it comes to my motor skills in therapy but how I really feel… not that much better at all- maybe even the same.


In November I started feeling worse with joint pain and I feel that the Celebrex has really helped mask that pain… until recently. I have had such bad pain in my hips and my back. Also, my wrist joints have really been bothering me. When telling my therapist he said that I am not weight shifting properly b/c of my neuropathy that my weight is all on my left, which causes my back to be in pain. It is like my spine is almost curving b/c of how I have been walking.  


I guess I am just so frustrated with still trying to function. Overall I have sensory ataxia and proprioception. Overall this means that my right leg needs some sensory input in order for it to move at times. I sometimes rub my hip or place my  heel on the ground that way my body has some input to move. Also when I am walking I feel that I have to look down to see where my foot is going. I am trying to look forward but I am having trouble with that. The Proprioception means:  The sense of position and movement of the limbs and the sense of muscular tension. The awareness of the orientation of the body in space and the direction, extent, and rate of movement of the limbs depend in part upon information derived from sensory receptors in the joints, tendons, and muscles. Information from these receptors, called proprioceptors, is normally integrated with that arising from vestibular receptors (which signal gravitational acceleration and changes in velocity of movements of the head), as well as from visual, auditory, and tactile receptors. Sensory information from certain proprioceptors, particularly those in muscles and tendons, need not reach consciousness, but can be used by the motor system as feedback to guide postural adjustments and control of well-practiced or semiautomatic movements such as those involved in walking. ( FreeDictionary.com)


Overall all my brain is just not communicating with my body whether I was it to physical or just when I am writing or having a conversation. The Lyme is winning over my brain and I am fighting hard not to let it win.


Lately I have been feeling pretty down. This whole thing has really taken a toll on me in so many ways. I just hope that if I get this Piccline next week that it helps me feel better because I really want to be me again soon!


On Wednesday I go back to the Integrative Medicine Doctor. I finished using that KMT frequency machine last week and I will see what the Doctor has to say about it on Wednesday. I really hope these parasites are dead! I mean I tried 3 rounds of different oral antibiotics- I hope that it helped! I will keep you posted on what the doctor says.


I also want to say THANK YOU to all have been supporting me. The visits, phone calls and cards truly have meant so much to me. Its is nice to know who is really there for you and supports you during rough times. I am lucky to have so many true and caring people in my life. Thanks to those who read and shared my blog. My blog has already helped people and has definitely helped raised awareness-, which was its main purpose. Thank you Thank you Thank you!

Memory Loss - Tired of Lyme - Lyme Disease Support & Consolation

Memory Loss - Tired of Lyme - Lyme Disease Support & Consolation

please click on the link above...

Memory loss, brain fog, trying to come up with the correct words, trying to read.. this write up from TiredofLyme.com is exactly what I am going through. I was able to read books in a day or two and it is not taking me 4 months to get through one book. I am working hard to read again but it is just not a fun hobby anymore it is more like homework. Also, having a conversation and trying to recall really does take a lot of my energy.... I am just so tired of trying anymore...

Please read and Let's Raise Awareness!

therapyyyy

I was having such a good day "heal toe" walking today!! We were able to get a good video of my foot NOT dragging!! There is a large mirror in front of me- I am focusing on my feet in the mirror. This past week I have had some good days with not as much dragging.. I am really working hard and this is a good video of me walking the best I have yet. I hold my hands like that I guess for comfort or balance. My PT-Mike, is trying to have me not looking down or hold my hands together any more but I am guessing that will take a little time. Still needing that "gate belt" when walking :( .. fingers crossed for me being able to walk by the summer!!!

My PT  Mike is having me try to do heel toe but going backwards. That is hard because my brain was just working on me trying to walk forward. But he says we have to send different signals to my brain and teach myself new things. I am again watching my foot in the tall mirror... this is still pretty hard for me.

This is me on the "rocker board". When I first started this in October I was so scared. Mike would have to hold me and put his foot on the board to help me rock. He still does at times but today I was doing it mostly on my own. This was my biggest fear at therapy and I am almost doing it alone!! We tried to go side to side by I still need 100% assistance for that- sometimes 2 therapists have to help me. I am happy I am doing better with front to back. This will help my dorsiflex- I can't wait to be able to drive again!

This is me side shuffling. I use to need my walker or hold Mike's hands. I am now just doing them with Mike holding my belt.




*Thank you to therapist Joe for video taping :)

Lyme Literate Medical Doctor

As I mentioned in my previous post I waited until after the holidays to really see how I was feeling and….. I was not better.
After reading online and going into different forums I read that I needed to see a LLMD ( Lyme Literate Medical Doctor). After talking to a friend of my brother and sister in laws friend I found a doctor that I could go see- an hour away from me.


I called at the end of December 2011 and was able to get an appointment in late February 2012. After talking to the friend of the friend she gave me her doctor appointment in early January. She has been Lyme free for a year and was just going for a check up.. I was so grateful! She is such a such Lyme Buddy- Thanks Lisa!


I went and saw the LLMD with my husband and father. The LLMD had a room in his office with many recliner chairs and IV poles. I noticed many patients go and get their treatments in his office. There were nurses and heating pads. It was just scary to see that I am going to a doctors office where IV treatment for many is needed.The doctor and I went over all of my symptoms and everything I had been through over the past 5 months. He seemed fairly certain that the Lyme is in my brain and is still very active. He did many neuro tests such as balance tests and reading lines in boxes ( which I did very bad b/c I couldn’t see any lines).


He then did some blood work and sent me to Quest to get more blood work done. We left the appointment. I then was to see him back in three weeks to go over my blood results.
I saw the doctor again last Wednesday, February 8th. He went over my blood test results with me. Good news is that my liver & kidneys are all well. No problems showed up with them in the blood work. Now it is time to discuss the Lyme…


He did 3 Lyme tests: The Elisa, The Western Blot Test, and the c6 peptide. When we went over the results the tests showed that the Lyme was indeed still active. He looked through all of my previous tests and he found that I never had the c6 peptide blood test before. He then decided since I never had this test we do not know if my Lyme number was going down or if the number was staying the same. He decided to use this number as his baseline. I then got blood taken there and am going to have more blood taken in 3 weeks.
I will go back to him in 4 weeks to see if my numbers have dropped, risen or stayed the same. Maybe the treatment I am doing with the intergrative doctor is working or maybe my body is beating it.. so I just have to wait and see.


So I may be needing another piccline and IV antibiotics for 60 days… my first 28 days in Aug/Sept didn’t kill it. Also, I asked if I could infuse myself at home ( before a nurse came and taught me how to give myself my medicine through my piccline). I found out that if I do it at home it will cost me between $15,000-$20,000. If I do it there it will only cost $2,100. The only problem is.. I can’t drive! So I would need a ride to get treatment for 60 days!!!! It is an hour there, treatment is an hour, hour home. So I just don’t know what I am going to do…

me using the KMT machine

Chorella Pills..yuck

Garlic Pills.. gross! really yucky!

Integrative Medicine Doctor

Integrative Medicine Doctor/ Acupuncture
I felt as though I was doing better in therapy but I was not doing better with how I was feeling. At times, I felt like I was getting worse. I gave it until after the holidays to see how I was feeling but nothing changed I was either getting worse or feeling the same.


My father spoke to someone about how I was not getting any better with the Lyme and that I needed to find someone who could help me. I then got a doctors name to try that is an integrative medicine doctor. Because though the neurologist and rheumatologist were giving me medicine all they were really doing is helping my pain.. not really fixing the core problem. Those doctors said that I had enough of the antibiotics due to IDSA guidelines. I understand that they need to follow guidelines or they can lose their license but at the same time.. I need more antibiotics or treatment! This is a HUGE problem people with Chronic Lyme have to deal with.


The integrative medicine doctor tested me in a weird way.. I think. He would hold different vials of things such as Lyme, Mold, Mecury.. etc. Then he would touch my arm and a nurse would be touching my leg and he would touch her arm. So we were in a triangle. Depending on how her and I responded (she was like a third party) would depend if I was positive or not. I think it is all through vibrations and yes he is a M.D.
My Test Results (January 2012): I tested positive for Lyme Disease (which we already knew I had), Mold infection, metals: mercury, aluminum, lead, cadmium, & arsenic. I also tested positive for a Gluten Allergey: Barley, Wheat, Rye & Oats.
People with Lyme can also develop different co-infections. I tested positive for four. (Mycoplasma, Bartonella, Ehrlichia, & Rickettsia)


1.Mycoplasma

 ** please follow me or leave any comments or questions you may have. You can also email me at samanthadawn1211@gmail.com** J
I also tested positive for parasites. I was told that the tick that bit me bit other animals first that had parasites. The tick then carried the parasites which then entered my body when I was bit (yes, very gross to hear that!) I just want to state again that: I DID NOT KNOW THAT I WAS EVER BIT!


The doctor wanted to treat each group of infections at a time. First I started treating the Parasites with 2 anitbiotics: Tidamax and Biltricide. After I started those antibiotics I then was to move on to treat the metals: Treat with chlorella pills. After my body could handle both those meds I moved on to treat the Mold using Oregano pills. Then treat the Lyme with Freezedry garlic and Quintenssence. Then finally the co-infections use PC-Noni. I have some videos of me taking these pills.


I then went back to see this doctor for my second visit, which was about 4 weeks later. I was yesterday 2/8/12. He tested me again and I still tested positive for all the above but he seemed surprised that I was still pretty positive with the parasites. I then got another antibiotic which I started yesterday is called Albenza.


He then gave me a KMT machine. This machine is like a EKG. There are 3 different frequencys I use to kill the Lyme, Parasites, and the Mold. I will be posting a video of this machine and how it is used. I need to wear it on my for 5 hours a day for 2 weeks.


Each time I was seen I also had acupuncture. To be honest I was never able to relax so I am not really sure if it works. I will keep you posted as my treatment continues.


So far just me seeing this doctor and getting the medicine for it I have already spent over $1,200 out of pocket.. no my insurance company does not cover it. This is one problem most people with Chronic Lyme have to deal with.. insurance companies saying no and doctor visits costing between $200-$1,000 each visit. Sometimes it could be even more…
I am also seeing a LLMD (Lyme Literate Medical Doctor) I will post tomorrow about seeing him.
- This species can be identified in ticks. They invade human cells and disrupt the immune system, causing fatigue, musculoskeletal symptoms, and cognitive problems. 2. Bartonella are bacteria that live inside cells. They can affect the whole body. Early signs are fever, fatigue, headache, poor appetite, and an unusual, streaked rash. Swollen glands are typical, especially around the head, neck and arms. Lymph nodes may be enlarged and the throat can be sore. 3. Ehrlichia-often characterized by sudden high fever, fatigue, muscle aches, headache. The disease can be mild or life-threatening. Severely ill patients can have low white blood cell count, low platelet count, anemia, elevated liver enzymes, kidney failure and respiratory insufficiency. Older people or people with immune suppression are more likely to require hospitalization. Deaths have occurred. 4. Rickettsia -Sudden fever
Maculopapular rash on soles of hands and feet that spreads over the entire body 3%-5% fatality rate. (http://www.lymedisease.org/lyme101/coinfections/coinfection.html)

Therapy Videos 2/2/2012

This is me doing a floor to stand without my brace ( with some assistance). I have been working on this for almost 2 months. As a preschool teacher you need to be able to sit on the floor & stand back up again.

This is me stooping and picking up an object. I have been working on this for about 2 months as well. I am good with going down but coming back up I tend to fall backwards but am doing much better.. any day now I am going to get this!

walking without my brace and wearing the gatebelt

Heal walking. I have been practing this at home using my walker. I am trying to get the input from my heel to help me walk. As you can see I do well holding up my left foot on my heal but my right foot is fighting me and can be on its heal but then drops to the floor.

Thanks for watching my videos :)

Therapy

Therapy: As I mentioned before I had home occupational and physical therapy for 5 weeks, 4-5 days a week, 2 hours a day. In October I started going to out patient OT/PT at Victory Physical Therapy in Mullica Hill, NJ. Michael is my main therapist but physical therapists Joe and Stephanie as well as the PT aide Brian, are always there to support me. I go to therapy 3x a week for 1½hrs a day.


I am going to therapy to help "wake up my nerves"- to re-train my brain how to use my right arm and right leg. Pretty much my right arm and leg do not work as much as they use to. My brain is not connecting with the right side of my body. I can tell you it is pretty frustrating when your arm and leg are not broken and you stare at them and they aren’t moving- I sometimes yell!!!! Some doctors relate me to Parkinson’s disease because I have some of the same neurological deficits. At times in order for my leg or arm to move I have to stare at it ( it is like with me staring it is sending the signal from my brain to my arm or leg to move). When I don’t look sometimes they do not even move.

My right arm: In order for my right arm to get better I need to do many OT activities. In my previous post I mentioned things that my home therapist had me do in out-patient I am working on getting my brain to connect with my arm. In the beginning I had to do this block shape puzzle, putting the shapes into their spot- a puzzle that I had in my preschool classroom! I would do this puzzle and they would time me- I could only use my right hand to complete the puzzle. In October it took me 2:45sec to complete the puzzle, by December I was completing the puzzle in 35 seconds! My right arm was starting to work again!! Another activity that I never want to do again is Bop-It! Yes, the game, Bop-it: twist, pull it, bop-it! That was good for me to play because my brain had to tell my hand what to do by listening to the game. I started off in October with a score of 5 I ended up in December with a score of 60! I lift weights- I am up to 7 lbs now and started out not even being able to life 1lb. I am doing salt and pepper using 4lbs, using an arm machine, 37.5lbs on the row machine, lifts 2lbs above my head.. so I am making great progress on my arm! I am able to blow dry my hair, pull up my hair, cut my food, eat and drink using my right hand, type, writing on the whiteboard and writing on paper. But it is not where it was and I am still dropping items out of my hand at times such as a drink or my phone. Working hard to get back 100%!


My right leg: I started going to out-patient therapy with a walker and my leg brace. They tried to get me to use a cane but I just couldn’t figure out how to walk with it- my brain wouldn’t let me. I need this brace to help me walk because my right foot doesn’t have a dorsiflexion therefore causing me to have a "foot drop". The brace helps my foot dorsifelx so that I can walk. If I do not where the brace my right foot just drags. The brace only fits into sneakers and Uggs so those are pretty much all I wear. So from September until about November I was using a walker or a wheelchair but now I am only using a brace ( picture of the brace was posted previous to this post). In PT I do some exercises with the brace on and some with the brace off. I am on the treadmill going at 1.8 speed with my brace on and with a therapist standing behind me incase I fall. Sometimes my foot drags with the brace on the treadmill but the past 2 weeks I have been doing better with that (as long as I watch my foot in the mirror in front of the treadmill). When we take off my brace I practice walking with a gate-belt around me so that the therapist can hold on to me incase I fall and he/she also holds my hand as I walk. I practice walking, running, stooping, balancing, sit to stand, kneel to stand, squat to stand, I always have to wear that belt for safety. Because of the Lyme being in my brain I can’t drive not only because I can’t move my right foot but also because my reaction time is off- so for safety for myself and others- I can’t drive.. and I feel like a prisoner in my own home and I have to be dependent on others. Also, because I can’t run or move very much I have gained 23lbs since August from medicines and not being active. My life has just totally changed and I am working hard in therapy 3x a week to get it back! I am going to post videos of me in therapy last Thursday, February 2. I just started video tapping so I do not have videos of how I was prior to now but hopefully these videos will lead up to be running and back at teaching my class!

PT Video January 26, 2012

Walking in Therapy- Brace is off! As you can see I still have "drag foot" I have sensory ataxia from the neuropathy caused by the Lyme. The therapist has a gate belt around me to help me keep balance and from falling. Hopefully I uploaded this video correctly :)

This is the brace that I NEED to wear every day to help me walk- without it my right foor just drags.

Neurologist, Rheumatologist & Therapists

(September 2011) So I am now home and as I mentioned earlier I was on Rocephin intravenously having a piccline for a total of only 28 days. I say only because that is all the doctors said I needed. I did some research on the internet while I was home and found that for someone in the late stage of Chronic Lyme I needed to be on intravenous meds. for at least 2-3 months. I fought and begged all my doctors. They said there is no research that said I needed to be on it longer.. even someone with all my neurological deficits. The piccline was then taken out without my approval but if you do not have a doctor to write you a script for antibiotics you are pretty much out of luck. My primary was very honest that she did not know anything at all about Lyme so my neurologist from Jefferson (not the neurologist I was seeing before) was in charge of all my Lyme treatment.


So when I came home I had a homecare nurse monitor me 1-2x a week on my intravenous meds. I also had an Occupational Therapist and a Physical Therapist come about 4-5x a week. I did learn how to flush my own picc line and administer my own medication (of course with the help of my family member who was with me for the day). OT and PT would be with me for about 2 hours a day.. and boy was I exhausted. It was so hard for me to be home and not use of my right leg and my right arm. I had to have people cook for me, clean for me.. I needed someone to care for me all the time. I have a chair and a rail in my shower and had to have someone home while I was bathing incase I fell. If I wanted to go out I needed my walker or w wheelchair.. I was an active preschool disabled teacher-.. and now I lost all I knew.
In home PT/OT therapy I worked on eating, brushing my teeth and hair, cleaning, dishes, cooking, dressing, getting out of bed and into bed, walking, sitting, weight shifting, puzzles, ziping, buttoning, catching a ball, and I so many other things. The therapists I had from Holy Redeemer ( Anna and Lori) were WONDERFUL.. They really cared for me and would help me everyday. After working hard for 5 weeks at home therapy I finally graduated to outpatient therapy where I currently am now. I go to outpatient PT/OT at Victory Physical Therapy in Mullica Hill , NJ. The therapists Mike, Joe & Stephanie as well as the PT Aide Brian are so caring and are helping me to fight my way against this disease every sing day. I am so lucky to be in such a great place right now. I am going to talk more about therapy later and post videos as well.


(September-present day)So far since I have been home from the hospital I have seen my neurologist 4x. I would like to say that each time I go I do make some progress but not enough to be "me". I have neuropathy on my right side ( arm and leg) and I still have mild Bells Palsy on my left side. The nerves cross over from your face to body that is why it is on my left face but right body. Even though prior to being admitted into the hospital I felt my left side go numb that day I think they got the meds in me fast enough to stop it from being damaged. I know that my left side was not like it was before but I am about 99% back to where I was on my left side. I also lost hearing in the bone on my left side, which is most likely permanent. I can hear if someone is talking to me but I think it has to do with certain tones… I am not really sure. I would say as of right now on a scale of pain/discomfort of numbness where both my arm and leg was a 10+ in the hospital I am about a 3 on my right arm and an 8 on my right leg. The neurologist is happy with my improvement and I know it is because of going to therapy where I give 110% everyday! He said that I have severe nerve damage from the Lyme and the smaller nerves will heal faster than the larger ones. So far that statement is true. I am only on Gabapentin (Neurotin) from the neurologist which he said all he is doing is masking my pain- not healing anything (that is why I am now seeing specialists because I need someone who knows Lyme since I am still pretty sick).


 When the neurologist tests me he does all the tests where I have to pull/push against him, pricks my leg to see if I can feel it, vibrations, eyes closed touching my hand to nose. All of these things have improved since August but I would say I am 85% better with my arm (I am still dropping stuff out of my hand and have trouble over reaching) and I am about 40% better with my leg. I am out of work from my neurologist until April in when I am hoping to resume my full time teaching position but he doesn’t seem like I am going to be ready.. fingers crossed!
(November 2011) around Thanksgiving I started having so much pain.. I mean I thought I had bruises ALL OVER my body! Every single joint hurt, my ribs, my spine, my jaw- everything. I called my primary and the neurologist and they told me to go back to the ER. All the ER was able to do for me was to give me IV pain meds and send me home. After going home I made an appt. with a rheumatologist and was put on Celebrex. I had bloodwork taken at the end of December 2011 and just saw him last week, January 31, 2012. He told me that he found some of my bloodwork elevated and positive that I may have auto immune disease or chronic fatigue syndrome. I researched both of these and it seems that many people with Lyme have one or both of these or their Lyme is misdiagnosed with one or the other... so we will see. Waiting for him to call me back this week with my blood results.


I am now seeing a LLMD and an integrative medicine doctor. I saw them both in January 2012 and I had my second appt. today with the integrative medicine doctor and my second appt.. is tomorrow with my LLMD. ( Lyme Literate Medical Dr.)
I am going to go through what both of these doctors found tomorrow night. Thanks for all who are reading following! :)

YAY! I can finally cut my own food again!!! :)



My first picture of me with Lyme

The one and only picture I have of me in the hospital. I have my walker I need to get around for 2 months and you can see the Bells Palsy as well as my picc line in my right arm.

This is what my picc line looked like it. It went into a blood vessel in my right arm and then stopped in my superior vena cava. It was 33cm long.
**For those of your with a picc line ... I ordered a cute lyme cover on Etsy to help cover your picc line and give you something pretty to look at.

in the hospital....

** I wanted to start off with the background before I talk about where I am now.. which I am still not better but better than I was in August. I work hard at therapy and have been taking videos, I am hoping I will be up to date with my blog sometime this week. Thank you to all who are reading. LET’S RAISE AWARENESS**



Jefferson University Hospital- I was now diagnosed with having Chronic Lyme Meningitis. I had a team of doctors: family medicine doctor, infectious disease doctor, neurologist and rheumatologist. The doctors had me on the antibiotic Rocephin given to me intravenously since I was in the ER. I only had about 5 days of the Doxycycline until they switched me ( I took these pills before I was in the hospital so August 31 was the last day that I took these pills). They told me that the oral meds would not help me because the Lyme was in my spinal fluid and in my brain. They said it crossed over the membrane and that only intravenous medicine would be able to help me.



While in the hospital my arms and legs became more and more numb ( mostly just my right side). It was a cold squeezing feeling. One night I cried hystrically as the nurse tried every pain medicine in the book I feel like. I tried Dilaudid, Oxycodone, Hydrocodone- nothing would work. All that would help is if she was able to rub my arm or my husband rubbed my arm ( he stayed with me most nights <3)The arm rubbing wasn’t really helping the problem but I think it was more of a comfort feeling. Nothing was helping because it was nerve pain. That is when I started Amitriptyline (Elavil) and Gabapentin (Neurotin). Overall I am still having this pain and nothing ever took it all away…I am still on those meds daily. ( I will talk about where I am now after I get my background done)



I also started developing pain in all my joints. My shoulder, elbows, hips, knees, wrists and ankles hurt so bad. I would just take pain meds for everything and ibuprofen (anti-inflammatory). In that first week of the hospital I was just very tired and in so much discomfort/ pain from the numbness. I was continuing to forget things and of course I was scared.. I was in the hospital for a week already and no signs of leaving. The doctors were waiting for blood work and cultures to grow. It was nuts!
This second week is when I feel like it got worse. Every morning they would come in and I would get my Rocephin intravenously, they would take tons of blood, and doctors would give me a check up. They would always try to push down on my legs and for be to push back, same with arms and wrists. It was obvious that I was getting weaker on my right side. On that second Wednesday (September 7) I would say was one of the worst days I had. I was emotional because school was starting and I wanted to be there to greet my class (they had to give me a Xanax because I couldn’t stop crying). It was just a hard day too b/c I was there for a week and I just wanted my life back.



I would try to take walks in the hall throughout the day to move around and get out of my bed. It was getting harder to walk and whoever was with me would walk and hold on to me and I would hold on to the railing. On this same Wednesday, my best friend, Shannon was with me. We were going for a walk around the hospital floor when we saw a man needed to get by. I stopped to let him pass (we had to wait a minute as a nurse was rolling this mans bed down to xrays or wherever) As I am standing there I turned to Shannon saying that my leg was so numb and I can’t feel it on the floor. She said she would help me walk to my room when then my left leg went. A nurse who was close by saw me and grabbed a rolling office chair sat me in it and took me back to my room. As I saw the concern in my friends eyes (she is a RN and for her to look scared for me I was scared) I knew something was really wrong. The doctors all came up to check on me and I could not move my legs at all! My foot, my ankle, nothing.. I thought I was officially paralyzed. The one thing is though I could feel when everyone was touching me- it wasn’t like I couldn’t feel anything. I would stare at my legs yelling at them to move (my brain was not listening and not telling my foot what to do). I then found out I have neuropathy secondary to the Lyme. About 3-31/2 hours later my legs moved again my left leg was not the same but pretty close.. but my right leg was not even close and it still isn’t praying one day it will be. (I will talk more about how my leg feels in a later post)


I then started Physical and Occupational Therapy. My left arm and leg totally took over.. its amazing how your brain can work. I am a right handed person so when I wanted a drink -my left hand would just grab it- so weird. I couldn’t eat with my right hand ( not that I ate much of anything those two weeks.. I was so sick from the medicine and still do get sick), couldn’t get showers at times without help ( I had to sit in a chair in the shower ( I still need a chair and railing in my shower at home). I officially become dependent on others. I was not me and I did not know who I was anymore.. I was depressed for the first time in my life and yes this depression is still here.



After that terrible Wednesday- Thursday was even worse. As I mentioned before nurses and doctors would come in early in the morning they would come in and give me Rocephin intravenously, take tons of blood, and have a check up. They would always try to push down on my legs and for be to push back, same with arms and wrists and they would have me smile big, growl like a tiger, and lift my eyebrows up- I thought they were nuts…..until.. I finally realized why they did this. At 5:30am when the nurse came in to give me my medicine I noticed my lip was really tingling. I mentioned it to the nurse and she told me it was probably something I ate. She hooked up my medicine and left. As I lay there I could feel it getting worse. After about 40 minutes (that is about how long it took for my medicine to get in) the nurse came back and unhooked me. I told her that my face feels really weird and I did not eat anything- I just woke up! She told me just to go back to sleep. So I started thinking what the doctors ask me to do: growl like a tiger, smile big. I jumped up and went into my bathroom and looked into the mirror.. and I did all of that and I couldn’t on my left side! Now I knew what they were looking for and I guess waiting for- Bells Palsy.



I scooted my way into the hallway crying until the nurse came. I showed her and she told me to calm down and the doctors would be by shortly. Now my amazing husband stayed overnight with me almost every single night but that night he had to go to a rehearsal dinner and couldn’t stay over. So I called him and I called my parents hysterically crying that morning. All I have to say is I don’t know how my dad made it to Philadelphia that quick but he was by my side. My dad demanded for the team to come in. He asked them why is she getting worse, what else can we expect? Overall, I hit almost every symptom except luckily the Lyme never went to my heart but it was sure in my brain.


I was in the hospital from August 31- September 13. The Thursday that I developed Bells Palsy they also inserted a Picc Line in me- here is the definition. (http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter)

I went home with homecare infusion and home therapy (They wanted me to go to a rehab facility but I just really wanted to be home) In order for me to walk I needed a walker or at times a wheel chair. As when home I needed someone with me at all times- thanks to my wonderful family and friends I had that. I was on the Rocephin intravenously for a total of 28 days.


From the Lyme I developed poly-neuropathy causing sensory ataxia and "drop foot" on the right side of my body from the Lyme. No driving, no teaching, no making food, no showering alone, no anything.. I couldn’t do it.. I couldn’t think (couldn’t read any books- couldn’t concentrate), my whole body reaction time was off.. I was not the Samantha I knew… (and I am still not but I am working hard to get her back)

My Story (The Diagnosis).. post #2

So on that Tuesday night, August 23, 2011, I walked into the ER with help from my husband. I was very scared and unsure what was happening with my body. I told them I thought I was having a stroke or I was going paralyzed. They brought me back and they gave me a catscan (they were thinking I had a stroke or they were looking for signs of MS) They told me all the symptoms I was having pointing to the MS. The catscan came back that I was fine and they diagnosed me with a pinch nerve and sent me home. I was to follow up with a neurologist the next day.


The next morning, August 24, 2011, I woke up numb and tingling on my right side (arm and leg) I called the neurologist and they told me that I can be seen the 2^nd week of October.. Ummm, This is the 3^rd week of August… are they CRAZY? My husband yelled in the background that I needed to be seen today and ASAP. They said fine come in so my husband and I were on our way to the Neurologist. The neurologist did some neuro tests with me and he said he noticed my right side was weak. He wanted me to get blood work and a MRI of the brain and neck. He said I would have to wait a few weeks to get the approval for the MRIs.


About two hours after we were home I was feeling worse. We decided to go back to the ER. I brought all my scripts with me and had all the blood work and MRI’s done that night. The ER doctor came back with all my sugar levels were good and the MRI’s were good so it is most likely a pinched nerve. Now I did move furniture around in my classroom setting up for the new school year so I could understand hurting something.. but a pinched nerve from my neck to my fingers to my toes.. that must be one long nerve! So I went home thinking I had the pinched nerve and I just needed to suck it up with the discomfort.
　
Then, that Saturday, August 27, I received a phone call from the hospital. The nurse told me that my Lyme blood work came back with a FAINT POSITIVE. She said that I needed to start Doxycycline (an antibiotic) as soon as possible and that I had to get to the pharmacy soon b/c this is the day that Hurricane Irene was hitting New Jersey. I started the medicine and boy was I sick from it: nauseous and dry heaving- it was strong and I had to take it without food.. it was terrible. That night we were up watching all the hurricane coverage but I was really loosing the normal feeling of my leg and arm. I was getting worse. I continued with the medicine on Sunday.


On Monday I made a call to the neurologist telling him I tested a FAINT positive with The ELISA Lyme blood test. (I am writing faint in capitols because so many people who have Lyme can have 3, 4, 5,..negative blood tests before they come up with a positive.. this disease likes to hide!) He told me that I need to get a more accurate test called the WESTERN BLOT TEST. I went to get my blood work that day and the doctor said it would probably not get back to him for a few days and that he would give me a call with the results. After the blood work I even went into my classroom to continue setting up ( just ignored the feelings I was having).


On Tuesday morning I went into my classroom again and continued to set up. I decided to take a break and meet my friend for lunch. As we were eating I started panicking that my left side of my body started going numb. I ended up leaving lunch early and drove home ( I know, that probably wasn’t the smartest thing to do). My husband then insisted that I call my neurologist to let him know that I was getting worse. The nurse told me he would call me back later that day.. well he never called. I knew something was wrong with me- I seriously could not drive I was numb. I still have not been able to drive a car since that Tuesday morning ( August 30, 2011). I asked my mom to drive me to my classroom Tuesday night to help me continue to set up. I told my mom- I think something is wrong and I need my room to be ready for the first day of school.. just incase I need a substitute that day. We got the room ready and that was the last time I did anything in my classroom (I really miss teaching).


I woke up Wednesday morning, August 31, and waited for the neurologist to call me back figuring he would first thing in the morning. Well, I was wrong, 2:00 came and no phone and I was feeling worse! I decided to call the Neurologist emergency phone number (his cell). He answered kind of annoyed with me telling me that he did not have my blood work results and he can’t do anything to help me until he has them and says "OK KID!" Well little does he know that I am NOT a KID and I am a smart woman so I decided to call Quest (where the blood work was taken) and asked them if they had my results or when they would be in. They then told me that they sent the results over to the doctor YESTERDAY!!! I asked if they could please send them again right now and they did. I waited about 20 minutes before calling the neurologist back on his cell so that the results could get there through his fax. He seemed very annoyed that I called him and I told him he got my results yesterday and he should have another copy through fax right now. He then said I need to learn to be patient and he will let me know when he gets the results. He said that his office is closed right now ( 3pm on a Wed.) and he will get back to me tomorrow. I begged him to please call me as soon as he gets them.


Well at this point I was hysterical!!!! My phone then rang 2 minutes later with him telling me that..Yes, I am positive for Chronic Lyme and that I will need intravenous medicine and a spinal tap. As I was crying on the phone. I then I asked the neurologist what is my next step was. He then replied with "ugh, I JUST TOLD YOU. My office is closed and I will have my nurse call you tomorrow or Friday." Well, I hung up a hot mess. The kid in me came out and I called my mom hysterical. She then called the neurologist and let’s just say I am not sure what went down but I never saw him again! Haha.. Yay Mom! ( see we all need our moms still at 27)


Well, I needed to be seen and I need to go to a good hospital. My husband, parents, and I decided that I would go to Jefferson University Hospital in Philadelphia, PA. I went into their ER and waited for about an hour. They took me back and I went over everything with the doctors. He was able to get my blood work from the other hospital but when they called my neurologist he told them he never received the paperwork (what a LIAR) I told the ER doctor to get my records from Quest. Then after the ER doctor received my results he then decided that I needed to get a spinal tap.. and I was scared! The spinal tap lasted about 40 minutes and it was so uncomfortable and painful (I was numb but I think I was just scared because hey.. they are pulling fluid from my spine!) I was then told to lay flat on my back for 2 hours without moving (you can get a real bad headache from spinal taps if you do not lay flat on your back).


It was now early Thursday morning, September 1^st, the ER doctor comes in with a neurologist. He puts the IV in and tells me that I am being ADMITTED…… little did I know that my body would never be the same and that I would be there for 2 weeks……..

My Story (the beginning).....

Hello all! I am Samantha and I was diagnosed with Chronic Lymes Meningitis in August 2011. I am 28 years old, married, a special education teacher and live in southern New Jersey. I wanted to start a Blog to help raise awareness of what Lyme Disease can do to people. I am just starting out with this blog. I will be posting pictures, videos, links to helpful Lyme Disease Websites, etc.  I will be writing a little at a time and break it into easy to read paragraphs (us lymers have trouble concentrating and reading) I will begin with my story…..

Summer 2011: As the summer began I was feeling very tired and achy, but I am also a teacher and the year just ended so I was thinking my body was just tired from the year or I thought maybe I could be pregnant so… I ignored these symptoms.
JULY 2011: In the beginning of July I started having terrible earaches. I had severe pressure in my ears so bad that I felt like I was up in the mountains or in an airplane.

The pain was so bad that on July 4^th weekend I actually went to the ER just to be seen. The ER doctor told me that I had a severe ear infection. I then started antibiotics and eardrops I was told to follow up with my primary doctor on Monday. As I started the ear drops and medicine I felt like I was getting worse so I decided to just stop until I could get in to see my primary doctor. The primary looked into my ears and said they are perfectly fine and she sees no infection at all. I told her that the pain was so intense that something had to be wrong. My doctor then recommended that I see an ear, nose & throat doctor. The ENT looked in my ear and even a little camera up my nose, overall he told me that I had severe allergies and gave me a shot of steroids. He also gave me a prescription for steroids to take and to follow up with him in September for allergy testing.

 As this was all going on I had to start my summer teaching job. I teach extended school year in the summer to my students for 4 weeks (2 hours a day). Everyday after work I would go home and eat lunch. I then had many errands to run or projects to begin but instead I would eat lunch and sleep on the couch for almost 4 hours after my 2-hour workday. I really had no energy to do ANYTHING at all and again just thought I was tired from the school year.

 As I was teaching I then noticed I was having some memory confusion such as asking my assistants if we sang certain everyday songs or if we read a story. I also was not remembering conversations I had with my family or friends. Overall I would just laugh and I would blame it on not having drank enough coffee that morning. Again, I was just ignoring most of these "symptoms" b/c.. Hey! I was a healthy 27 year old girl!

As the summer continued I was down the shore a lot staying at my parents shore house. Now, I am a fun party girl. I like to drink socially, play games, go out, ride on the waverunner, etc. I ended up going to bed at 9pm and just wanting to sleep on the beach and not go out and not do anything. I didn’t really notice I was not acting like myself but I was told that my family did notice. About mid August I noticed my arm and legs would start going numb and I would wake up and just lay my arm/leg off the side of the bed to help let the blood flow (thinking I was laying on my arm or something in my sleep). I then started having this tingly numb feeling in my arms and legs throughout the day (when I know I wasn’t cutting off blood circulation). I mentioned this feeling to my husband and parents and they told me just to call the doctor and let them know.. but really?? What was I going to call the doctor and let them know that my arm falls asleep for a minute? Well, I never called.

The numbness and tingly then started again but for a longer period of time and one night it was crazy. I told my husband and he asked if I ever called the dr.. which my reply was no. I then got into bed for the night and BOOM! My heart felt like it was jumping out of my chest and my body would not move. I then tried to scream or get out of bed to get to my husband and tell him something was really wrong this time. As I went to yell nothing came out. Tears running down my face.. I was officially scared! I went to get out of bed and fell to the ground. I was then crawling, pulling myself across the floor into the hallway to get my husband (who was in the bathroom and knew none of this was going on). I was trying to get to the bathroom door where he was but I froze and again no voice was coming out of my mouth. I am not going to lie I thought I was dying right then and there. My husband then opened the door and saw me on the ground not being able to move and could barely talk. He then took me right to the ER…..