Αυτό το ιστολόγιο είναι διγλωσσο απο τον Ιούλιο του 2011. Οι αναρτήσεις γράφονται ως επι το πλείστον στα ελληνικά και κατόπιν μεταφράζονται στα αγγλικα, το συντομότερο δυνατό.

This blog is bilingual since July 2011. The posts are written mostly in Greek and then translated into English as soon as possible.
All you have to do is scroll down after the Greek post.

Tuesday, October 19, 2010

2nd infusion OK!

After what happened last Saturday in the hospital, I have to admit I was a little nervous about the next infusion. As per my doctor's instruction, I didn't infuse yesterday, so today was the second day... But from now on, the protocol requires 2gr Rocephin IV (intravenously) everyday, once a day... Let's get this party started then:)

Things went much better than I expected today. I had a nurse come over to my house. He was recommented by my physical therapist, who works with him in the Intensive Care Unit of a Hospital for cancer patients here in Athens.  He was really sweet and had a huge smile, so I felt comfortable immediately. Being very experienced with PICC lines, because of the cancer patients he treats (most of them get PICC or port lines for chemo), everything went as supposed to. After the drug infusion, he flushed my PICC with heparin, with totally no side effects! Then he cleaned the line area and changed the Tegaderm, so I was good as new :)  Absolutely nothing like the experience I had on Saturday...(obviously). He is coming again tomorrow.

Today I also started my supplements, except from the Milk Thistle and the Nystatin I've been taking since last Saturday (my full current treatment protocol is here). Due to the fact that it is IMPOSSIBLE to remember them, in order to keep a daily track, I made a checklist! I was so happy to make a checklist in Excel....reminded me of the good old days when I worked in the Bank!!

I am so proud of my checklist, I couldn't resist showing it off to you...(geeky, i know:))

C u soon ;)

Sunday, October 17, 2010

First day IV treatment / Ports & PICCs

As many of you know from my fb updates, I was kinda scared and anxious about having a port catheter placed on my chest scheduled for last Thursday... In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick". The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free. That is why I was convinced to have this instead of a PICC line... A peripherally inserted central catheter (PICC or PIC line)  is a form of intravenous access that can be used for a prolonged period of time (e.g. for long chemotherapy regimens, extended antibiotic therapy, or total parenteral nutrition). First described in 1975, it is an alternative to subclavian lines, internal jugular lines or femoral lines which have higher rates of infection.

I had a PICC line last March for 10 days, because I had to have a series of infusions with Dioxychlor, as part of the stem-cell treatment protocol! It was placed right on the joint so it was very uncomfortabe... Remembering that, I agreed to have the chest port this time, even though I had "chills" only with the thought of it sticking out of my skinny chest...:(

Well, luckily this skinny chest "saved" me for now. When the doctor who was going to place the port saw me, he insisted on placing a PICC instead, because the port would be very painful for me.. So we've decided to have the PICC, place it higher on my arm so I can bend it and move it without problems, and IF in the future a chest port is needed we'll see... One day at a time....and now it was only PICC time day!

The procedure took place in an O.R., under an ultrasound/x-ray machine so the doc could see exactly what he was doing, it did not hurt at all and was done in about 20 minutes. I felt very comfortable, as the doc was talking to me the whole time, making jokes with the nurses and arguing with them about the music in the room :) Before I knew it the PICC line was all ready in my left arm. So now I was ready for the next step...the infusion of antibiotics!

According to my new protocol, I am supposed to infuse 2grams of Rocephin a day. On the first day, this infusion should happen in a hospital, in case I had allergies to the drug or other complications. Therefore since my doctor (well, one of them actually) is a Director in the Naval Hospital, my parents and I woke up early in the morning today and drove aaaall the way to the Naval Hospital...A 3-4 minute drive from our house!!!! Funny I know, but I can't walk this distance anymore, so the car was necessary even for these 4 minutes...:(

I can't complain, everyone there was very polite and nice to me. I sat comfortably on a bed, the doctor did a test-infusion first with a small quantity of the drug and right after that, the infusion started. It was planned for 30 minutes, but lasted around 40, because it was the first time and the doctor preferred to take it slower for safety. I didn't feel anything, in fact I think I even took a nap. When the infusion ended, the doctor came by to put an anti-clogging drug (heparin) in my PICC, so I would be nice and ready for the next infusion tomorrow...And the shock began!!!...As he infused the drug fast in my vein I suddenly felt like the drug was coming out of my mouth, my eyes, my nose...My heart felt frozen and painful, and my WHOLE body felt numb! My lips felt so numb I couldn't speak, I couldn't breath, and I started to shake!! It was the first time in my life I felt I was dying! This lasted for a few minutes, the doc was next to me asking me what was wrong (as he told me later all my vitals were normal, heart rate, etc) because he could not understand why I was like this, I couldn't speak-I was just yelling noises, and I wanted to punch him so he would stop asking!!!!!! What a friggin shock....It took me a while to relax and stop shaking! Then he said that he didn't actually use heparin but another "better" stuff, and maybe because it was cold and entered my bloodstream rapidly, I felt what I felt!!!!.....I was mad, but also wanted to leave the hospital and go back home asap, so I didn't continue the conversation. I just hope that this will not happen again, because it was the scariest experience ever...and u know, I don't get easily scared anymore;)

However, after a 3 hour sleep, a nice meal, some cake and a lot of Pepe, I felt much better! Overall it went good. I'm happy that (at least for now) my body "accepted" the Rocephin antibiotic, my current #1 weapon to continue the battle. So, I hope it goes better tomorrow and I leave you now with some photos from today, taken after the hospital (so excuse my "look"... LOL!).

New PICC line

I always feel like somebody's watching meeeee :)

Kiss me kiss me c'mon
The best psychiatrist's name is Pepe:)

Saturday, October 2, 2010

Lyme Alert Greece and more...

Since that "August-from-hell" ended and I finally had my IGeneX results back, I started feeling a little better (mood-wise)! So I slowly began to built that Page on Facebook for Lyme awareness in Greece. That Page has been on my mind for a long time now. It just "hit" me suddenly one day while I was trying to figure out WHY me?...Why did I, had to go through ALL THIS? Well, I guess my mind answered with this idea: I had to live this, I had to go through all this suffering, because I was the one who could make something big out of it!

As my fb-friend Mel says "If I can bring one child back from a misdiagnosis of MS. Or a elderly back from a misdiagnosis of Alzheimers'. Or a ball player back from a misdiagnosis of ALS. Or a banker back from a misdiagnosis of Lupus. Or that student back to a real life from a misdiagnosis of Autism. Or that honor student back from a misdiagnosis of ADHD... I will have accomplished my goal". This is my goal too. This fb-Page is only the beginning. If I manage to survive and heal, I will do a lot more. I have it all planned in my mind already!...For now, all I can do is translating articles in Greek, posting links and asking people to suggest my Page to others. A friend asked me the other day "is it worth it?", when I told him to invite people...Yes, I think is totally worth it. Because maybe one of your friends might have a friend who has a friend with a misdiagnosed case...And maybe he/she can look a little further being aware of Lyme and be saved. It is worth it...Definitely!!

You can see a Like-box to my Page here, on the right side-bar of the blog. I also added a Twitter box just for fun, since I am very active on Twitter lately, twitting on behalf of my dog Pepe :P
Well, it's not ALL about disease...That's why we (Pepe actually) are ALSO on Blip http://blip.fm/Lord_Pepington daily dj-ing and talking to more people :)) Fun!!

B back soon!

(image from http://www.etsy.com/listing/56226014/sweet-and-sour)

IGeneX' Results and New Protocol

It's been exactly 2 months since my last update. I admit it people, I've been lazy! But also tired, hot, some days very depressed, anxious... It was a rough summer for me, but now it's over, sweet breezy Fall is finally here, so my new blog-layout and my fabulous self are back :)

First of all, the "good" news.. I'm officially diagnosed with Lyme Disease. Actually, Late Stage Neuro-Lyme. Officially meaning positive for Lyme by IGeneX lab and by the CDC (Centers for Disease Control) strict criteria. After 3 years of searching and struggling for a diagnosis, it's on paper now. 3 years!!...that I couldn't get any answers... My health was deteriorating and doctors didn't know why...I knew. I even ordered a Western-blot (test for Borrelia antibodies) myself in a lab here in Greece. Came back "negative"...although 3 very specific bands appeared positive... But I didn't know so much then. I should have known right? Bad, bad me! Only one doctor, Dr.K, told me almost a year ago that I had Borrelia, by using his ART method (http://www.neuraltherapy.com/art.htm). Other doctors did not believe that..I'm not a doctor but I believed it. It sounded much much better than the (one and only) ALS-death-diagnosis I got from MassGeneral last summer.... And that is why I say "good" news. It's a little ironic being happy testing positive for such a complicated and horrible disease as Lyme. To be honest, when I got my test results back I cried. For hours. I was devastated thinking of the battle I had ahead of me...Long term, difficult battle! Being so physically weak and tired already! But at the same time I was relieved by thinking I AM strong and I will win this. At least I'll try as hard as I can! It is a disease that can be battled-so it IS good news after all... Compared to...

Well now, I have to try to forget everything that has been (unsuccesfully) done so far concerning treatment, and start fresh again! Following my recent treatment with oral antibiotics, it's now time for the big stuff: IV (intravenous) antibiotics. After the Lyme-positive results, that's the best way to go. I had a meeting with my doctor and the Turkish doctor (remember?..the "Salsa" guy), who both also agreed with my American lyme-advisor, that our next step is IV Rocephin. So I will have a chest-port catheter placed on my chest (bleeach...) in order to infuse Rocephin daily. I hope it doesn't hurt. I've been told that the catheter is much better than the PiCC line and after a while, you forget about it. We'll see, I'll let you know... However, I think it will be easier than the PiCC line I had, because being able to use both arms is a very big thing for me now, considering that I have to use both hands just to hold a glass of water.

Hopefully in the next 10 days I will go under this procedure and will start infusions. I will also have the SPECT scan (at last!). Doc feels very optimistic and hopes for a significant improvement within the next 2 months following this new and aggressive protocol: 

ROCEPHIN (ceftriaxone sodium) IV 2gr daily inf.in 30 minutes 

  1. Bowel SUPPORT FORMULA RNA drops
  2. Nerve Coat FORMULA drops
  3. Cellfood drops
  4. GET-B12 (B12 Spray)
  5. Neurological Health Formula Tablets 
  6. Mitoforce Mitochondrial Support Tablets
  7. Carlson fishoil 1600mg liquid 
  8. Vita Spectrum capsules
  9. Reduced L- Glutathione 75mg
  10. Ther-Biotic Complete powder 
  11. Naltrexone 3mg/ml in EMU oil cream 

Of course, I continue my physical therapy along with light weight-lifting. This is going great. Fortunately I haven't lost any significant muscle tone, except from my hands. I build up rather easy, as long as I keep on my normal weight. So I try to eat plenty of protein as well as some "fattening" foods because in the last 3 months I lost a lot of weight that I have to gain back. I am still on my anti-neuroinflamatory diet, but once or twice a week I "cheat" with some Moussaka, or Pizza :) Thanks to a good  friend, I got a recipe for an amazing gluten/sugar-free Chocolate Cake...I enjoy it very often and with absolutely no regrets!! 
C u again soon.

This is a PiCC line...very uncomfortable-cannot bend arm!
I had it last March for a week, for stem-cell infusion preparation..

And this is the g/s/free Choco Cake! Yummyyy :)