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