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.

Thursday, December 30, 2010

This is not an update post... Happy New Year!

Well, 2010 is leaving at last! Hopefully 2011 will bring on some healing. I'm so sick and tired of being sick and tired. Things HAVE to change...I have so much to do...

ok, I'll take another nap!

                   never EVER give up!

don't think...just hope it will be better.

if it's not ok, it's not the end! remember this.

Happy, Healthy, Wealthy, Smiling, Loving 2011 to All! 
Thanks for your love and support.


Monday, December 13, 2010

SPECT Results

I've been trying to write this post for days...I still don't know what to say. I try to be positive but sometimes is really hard. Especially when the disease is so complicated, vague and relatively unknown. Ηowever, I'll tell you the facts, with a slight "yay" (as I promised in my previous post)...

Last Thursday, I went to IASO Clinic in the Nuclear Medicine Department (I didn't even know that it existed). There, me and another guy were planned to have our SPECT scans. The procedure was easy for me since I could stay still for about half an hour; the other poor guy had to repeat the scan 3 times because his brain major injury was making him move all the time :(  Just before the procedure, we were injected with a radioisotope fluid, which is necessary for the execution of the SPECT scan.

This is how the results look like...It actually shows the blood flow in different areas of the brain (the image is cropped and is just a small part of the results) :

The whole thing in the Clinic finished around 11am (I was there with both my parents since 7:50am!)... But we had to wait, because the meeting with the Doctor to discuss the results was scheduled at 13:00 at the Doctor's office, close to the Clinic. So we sat at Iaso's cafeteria to "kill some time". Horrible experience for my Lyme self...The noise "hurt" my brain and I was dizzy, the smells choked me and all this reminded me why I prefer to stay at home and never go out anymore!

Finally we met with the Doc. Remember, this is the Turkish Doctor who told me we would salsa...! He said that he was happy with the results, because the "damage" presented in my scan is theoretically reversible. The picture is also "compatible" with my condition so that's good news too. However, he used the word "theoretically" because he himself wants to see some improvement first, since every case responds differently to treatment... (that's why I don't shout Yays and Hoorays, YET). He gave me a new treatment protocol with many supplements and Tavanic IV antibiotic (Levaquin is the USA name) instead of Rocephin, which I took for a total of 2 months.

Yesterday I also got an answer from my American Lyme adviser -my Lyme Angel actually- who saw my SPECT results (which I scanned and sent to him) and was even more happy... As he wrote: "the "damage" IS reversible, your other symptoms also ARE reversible, they are all being caused by inflammation and since your treating it and killing it, your feeling worse, that's ALL right in line with the treatment...". I SO hope he is right. I've been feeling so bad lately, exhausted, stiff and off-balance that is scary. And depressing. I am a positive and optimistic person, but this "journey" is lasting too long and is getting tougher and tougher...

Anyway, I am off antibiotics from today and for a week (or maybe two), taking only my supplements and drinking A LOT of water, in order to detox and rest my body so it is ready for the Tavanic IV phase... Let's see... It is what it is!!


Tuesday, December 7, 2010


Remember the SPECT scan I was supposed to have last summer? It seems I'm finally having it on this coming Thursday at 8:00 am! I am scared. I am stressed. I am scared as hell actually, not of the procedure of course, but of the result... My Doctor said that this examination shows us the size of the damage and whether it is reversible or not!! Ok, we'll talk about it Thursday night... You will either read a post full of Yay, Yiupiiiii and WooHoo's, or a post without words, only a music video or something...! You'll understand.

Anyway, I don't know if it's my stress, the moon, the weather, a bad hair-day, my hormones, or all-of-the above; my mood today is soooo BAD, I even cried when my nurse was here!! So embarrassing! Poor guy he didn't know what to do, "coming uninvited" to this super pity-party of mine... Poor thing, he was trying to make me laugh! I was so "moved" by him trying and I cried more instead of laughing... (Damn you Lyme bacteria for making me so emotional!) Well, after he left, I thought that I have to get him a nice Christmas gift for everything he does for me...right? (Ideas PLEASE)!!

And on the top of all this, Christmas season is here...Again! Grrrrrrrrr.... :(

I'll be back on Thursday... until then, think of me...

(and HUG me again plz!!)

What's worth the price is always worth the fight...


Thursday, December 2, 2010

Time for YouTube...

I uploaded my video on YouTube at last! For those of you who haven't watched it on my previous blog entry, watch it now please... See how Lyme bacteria can affect the body, if misdiagnosed and left untreated. Educate yourselves and others. If I had a correct diagnosis and treatment 3 years ago, things might have been very different for me and for the people who love me and take care of me every single day! I hope it is not too late and that I will slowly recover. If I don't, at least I hope that my story helps someone to be saved. So please, spread the word... 

...and hug me plz :)

Wednesday, December 1, 2010

My battle so far... on video!

Today I had a very best friend here for coffee. We had fun talking, eating gluten free yummies and drinking Starbuck's super coffee drinks :)) She had last saw me about 2 months ago and she said that  today I sound much better (yay)! She also took a video of my nurse Yiannis, changing and cleaning my Picc line, as he does every other day. Because of this video, I thought it's about time. Time for you to see me. No more Mrs. Shy Lady, after-all this is another step to my "spread awareness" project... 

So, here is my own Lyme video:

Friday, November 26, 2010


Thanksgiving Day is a harvest festival celebrated primarily in the United States and Canada. Traditionally, it has been a time to give thanks for a bountiful harvest. While it may have been religious in origin, Thanksgiving is now primarily identified as a secular holiday. It is sometimes casually referred to as Turkey Day. In Canada, Thanksgiving Day is celebrated on the second Monday in October, which is Columbus Day in the United States. In the United States, it falls on the fourth Thursday of November...

This was today! And I wished my American friends to have a happy one. And I read many posts in blogs, facebook and twitter, on how grateful we have to be and how thankful to be alive, breath, have a house, food, friends, etc etc. I respect all these, really... But I'm sorry, I can't do that. I cannot be thankful to be alive or to breath; this is existence by default. If I wasn't alive I wouldn't know, so how cares? I cannot be thankful to have a house!...I was never homeless, so it feels silly. I cannot be thankful for anything anymore, because the most important thing to be thankful for, was taken away from me: Health!!

How the hell can I be grateful for not being able to walk anymore, talk, do simple everyday things, have a normal life damn it?? My dreams have all been destroyed and shattered... Ok, being optimistic I'll say "suspended". But still, being thankful??? Why? Other people have it all, what I used to have and much more, and they don't appreciate a thing! Why should I be thankful going through all this crap, day after day after day? I can't always look at how some people are worse than me, I'm thinking about myself and how I was. Sorry! Just 3 years ago I was happy. I was getting ready for a great life making great plans; a new exciting business, a marriage, having children with Italian names... And now I have to be thankful I can walk with a "walker"?? Sorry again! This is definitely not a whiny or a feel-sorry-for-me post, I hope it doesn't come out as such. This is an angry post, a very angry one! Angry on how unfair life is... Angry for all the suffering and pain in people... Angry on how some don't appreciate being healthy, functional,"normal"... Angry on those (including myself in the past) who underestimate the little things someone can enjoy, as long as he/she is healthy.

I know some might disagree, your comments are ALWAYS welcome and valued... I hope I didn't offend anyone. I also hope next Thanksgiving to have a better attitude and find reasons to be thankful.

(Hope hope hope...I'm starting to hate this word). 

Monday, November 22, 2010

No Use in Crying - Resolution

Sunday -very late- night again! Another weekend is over, a new week ahead tomorrow, etc etc... I had a rather good weekend. One of my all time best friends came to visit me yesterday. We talked about everything and everyone and laughed very much, as we always do. He is hilarious. I love him. I'm so sorry I cannot have all of my friends over here; I know some wanted to come with him to see me yesterday and I told him to come alone...I get easily tired, I can't stand too much noise, so I prefer to see people in groups of 1 or 2 maximum :) I promise though, when I get better, to have a huge party for all my friends...old, new, fb & twitter buddies, everyone who is "here" for me and makes me happy!! I don't know how I would get through this, without all of you. Thank you!

The point of this post however was not that. I got carried away as usual. What I wanted to say is that lately, every Sunday night I make resolutions! You know, like New Year's resolutions but on a weekly basis. Of COURSE I don't keep them, at least I try. Ok, last week I didn't ride my static/exercise-bike everyday like I promised last Sunday night! Yea I know, I HAVE to...! I will!

Instead I cried quite a lot. Anyone who knows me well, knows that I am a Cry-Baby. However, having Lyme has made me even more emotional (oh yes, it is in the symptoms list too) and I don't like it. I hate it. After all, it doesn't change things, it doesn't make them better, it is depressing and makes me look ugly and wrinkly...No use at all!

So starting tomorrow, no more crying!... (yeah right!! :))


Saturday, November 20, 2010

Infusion day 33 / Update

I noticed today that I haven't updated you for a while. Time passes me by so fast I can't believe it... Friends, people I know, children I see...Everything "moves"! Others grow up, others grow old, others join the army, or get married, or change jobs, or change houses, or make relationships, or break them up, or have children, or travel, or...The list can go on and on. The point is I feel so stuck with this illness thing. I AM stuck in fact. I have no choice though. I have to wait...Wait for whatever is meant to come for me! I prefer to wait for my healing whatsoever :)

Today way the 33rd day of Rocephin IV. During this past month of IV treatment I had my ups and downs. Some days were kinda fun, I didn't even feel the infusion, just chatting and laughing with my nurse during the whole half hour of infusing. Here I have to note how lucky I am regarding my nurse. He is so much fun to talk with, he is 28 years old, always smiling, but at the same time so efficient and professional. Some days I had a weird feeling while infusing, like chest-pressure and some light pain in my heart. Not fun! However, he knew how to handle it and I felt comforted and safe. He also changes the dressing of my PICC line every other day, so it stays in clean and problem-free for as long as needed. I still REFUSE to look at my PICC without the dressing (meaning: look at a tube sticking out of MY arm!). One and only time I did, I turned yellow and almost fainted!! Yiannis the nurse, laughs at me when I'm scared...He is right!

I had some blood tests yesterday, just to check things out after a whole month of pumping antibiotics in me. Everything ok, so we continue as planned. It seems I'll have one more month of Rocephin and then switch probably to Levaquin. By then I should start having some first small improvements. We'll see. For now, I haven't seen any good changes. On the contrary, I feel more exhausted, sleepy, stiff, weak and off-balance. Doc says it is normal and that I'll get worse before I get better...Let's hope so!

After all, I can't stop trying and hoping. Can I?


Saturday, November 6, 2010

My Own Pity Party!

These past few days I've been feeling very very bad. I have a cold I guess, so my nose is "running" like crazy (being totally stuffed at the same time), my throat is sore, my head feels like 100kg, my eyes are itching and of course I have a fever too, fortunately not very high. Normally I would not nag for a cold, but in addition to my whole situation, it is really unbearable!

Yesterday was the worse day. I could barely eat or talk. As you already know I have a major speech/voice problem, so not being able to breath properly because of the cold, blocked my speech even more. Therefore, it was definitely a perfect day for a "pity-party"!! You don't know what a "pity-party" is?...lol: A way of experiencing grief, in which you spend your time feeling sorry for yourself and whining endlessly about how crappy your life is. So yes, yesterday was a whole day pity partayyy for me, whoo hoo, yay pure Fun:)

Well, for a successful P.P. like mine, you need to use the following 3 Ws: The WHY, the WISH and the WANT. How to use them? It's so simple...Read and learn:

WHY - Why me? Why did this had to happen? Why now? Why me?(not wrong, you just repeat this one, it's a party animal) Why all this suffering? Why did my life had to be destroyed? Why did he leave me? Why didn't I do this 'n that when I could? Why do I look like that? Why me? (again!)...
WISH - I wish I was dead / Ι wish this was a nightmare and / I wish I would wake up healthy and strong / I wish this ends tomorrow / I wish I could forgive / I wish I could walk a block / I wish I could sing... Hmmm, the WISHs kinda overlap with the WANTs, so I continue:
WANT - I want to scream / I want to run on the beach / I want to walk my dog / I want to have a job and feel useful / I want to meet a real man to love me and stand by me / I want to go out for drinks with my friends / I want to cook for my parents / I want to go shopping with my niece / I want to go for a bike-ride with my older nephew / I want to hold up my baby-nephew / I want to swim / I want to travel / I want to be independent / I want to drive a car / I want to dress up without assistance / I want to be happy / I want to have a life...! 

Today I was a little better, so my precious P.P. ended. Not that I don't have the above thoughts anymore, but I try to be positive and add one more W in my mind...the "WILL".

You know, just replace the I WANT with I WILL and there you go...the perfect Pity Party Crasher is born ;)

Image from: http://www.fartparty.org/2008/04/22/pity-party/

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 :)

Monday, August 9, 2010

An Open Letter to Friends and Family...

Today I would like to share with you a blog entry from a fellow Lyme sufferer, Candice. 
Apart from the Dysautonomia that I don't have (I have more ALS-like symptoms as you know) and the MCS that I have in a milder form, this post could be written by me...and I believe also by many chronically ill people...I cried when reading it because almost every word of it describes how I feel and gives the information I want to spread out! Please take some time to read it.... 

"It takes a village."
my doctor said, as my parents and I sat in front of him, my parents wide-eyed and worried, while I slumped in a chair next to them. My doctor had just listed the additional practitioners he'd like on board now that I had just been diagnosed with such a complicated case of late stage lyme disease. I'm sure he could see the dollar signs register in my Dad's eyes, and the wheels turning in my Mom's head, making her mental to-do list. He said, "In order to get a lyme patient well, it takes a village".

I still believe that today, two years later, but to an even greater extent. I do believe that a patient needs a small village of talented practitioners to get well, but I also believe that at the end of the day, if the patient doesn't have their own village of supportive, accepting, educated family and friends to come home to, the puzzle is incomplete. You just can't do this alone.

Unfortunately though, debilitating chronic illness is a recipe for isolation. Every so often you come across a gem or two that will be by your side, learning with you, helping you, and supporting you through your entire journey. A lot of the time though, when you're chronically sick, you're "out of sight, out of mind" because the nature of normal everyday life tends to swallow up those around you. Since chronic illness can be such a challenge to understand, you often also come across what I like to call either "the doubters" or the "me-tooers".

The doubters are the people who doubt the diagnoses and symptoms that you have, and every medical treatment you decide to try. They think that "a person can't possibly be this sick for this long". The conflicting information and controversy surrounding chronic lyme disease certainly doesn't help. The "me-tooers" are the people who do know you're sick, but think that for some reason, they experience the same symptoms that you do. I can't quite figure out the logic in this one, but part of me believes that they might think they're a bit tougher and can handle the average symptoms we're "both" having. What they fail to understand though is, they can't possibly have the same symptoms at the same magnitude, or else they'd have the disease too. I don't entirely blame anyone for this. Until you walk a mile in these disease filled shoes, you can't truly step inside of my world.

I'm very, very blessed to be living with two amazing, compassionate, understanding people who continue to educate themselves and open up their minds and hearts to what I'm going through. Not once have I ever heard them compare the normal aches and pains of daily life to what I'm going through, and they haven't doubted me or my doctors at any point in this battle. But, as I said, "it takes a village". A village can't function with just two people. Having a small support system can be isolating for the patient, but it's also exhausting for the team. I often wish I could write a letter to my closest friends and family members, almost to recruit them and help them to understand, just so I can feel less isolated and my team could feel like they had some back-up.

So, I sat down today to write a letter. I know in reality I'm not going to send it. I figured I'd write it anyway though, in light of lyme disease awareness month, so maybe someone else could use it. If another patient like myself showed it to their family or friends and it helped their "village" to understand them better, and helped them to feel less alone in their battle, then my mission is complete. Whether you have Lyme, Dysautonomia, Multiple Chemical Sensitivity, or are just chronically ill, please, feel free to send a link to this letter to anyone you wish, and use the letter however you find helpful. Maybe one day I'll be brave enough to use it to help myself too.

Dear Friends and Family,

In light of Lyme Disease Awareness Month, I've been encouraged to spread awareness about the disease and how it affects the lives of those infected with it. I thought the best place to start would be with you, since you're directly connected to a Late Stage Lyme Disease patient.

Late Stage Lyme Disease is a neurological disease, much like Multiple Sclerosis, Parkinsons, and ALS are. When a person is initially infected with the bacteria, the disease is not neurological in nature and is easily treated with a course of antibiotics, but if the infection goes unnoticed and is left untreated, the bacteria continues to replicate and spread throughout the body. The systemic bacteria is able to morph itself into a resistant form that can hide itself in places in the body that the immune system cannot easily penetrate, like the joints, eyes, and the brain. The patient then becomes a Late Stage Lyme Disease patient.

I know that this information is controversial, and if you do a google search on it, you are likely to come up with conflicting information. The disease itself devastates a Lyme patient's life, but the controversy surrounding the disease makes it that much harder. Understandably, it breeds doubt amongst other doctors, friends, and family members of a patient. I like to explain it this way though:

The way Lyme Disease is currently being handled is much like the way AIDs was handled when the AIDs epidemic first arose. Patients who were infected with HIV were doubted, because the infection was so rare, understudied, and controversial. The patients were denied treatment and made to feel as though they were crazy, and that it was all in their head, despite their obvious illness and failing bodies. One of the leading Lyme doctors on the East Coast was actually initially an HIV doctor, and diagnosed one of the first cases of AIDs in North Carolina. He stuck loyal to his HIV patients despite the controversy surrounding the disease. He now primarily treats Late Stage Lyme Patients. It is reported that unfortunately, Lyme Disease is shaping up to look like an even greater epidemic than AIDs. This doctor asserts though, that compared to the research that was being done on HIV in the beginning of the AIDs epidemic, Lyme Disease research right now is alarmingly elementary and rather non-existent.

I'm sure that controversy exists in the early stages of any new disease or epidemic, because typically the initial reaction to something that we don't understand is to either fear it and avoid it, or ridicule it. Unfortunately though, as this happens, lives are coming to a screeching halt, much like mine has.

When Lyme Disease moves from it's early stages to its late stages, the symptom list grows exponentially. Initially, a patient may have 2, 3, maybe 4 symptoms that are easily ignored. By the late stage of the disease, the official symptom list expands to over 57 symptoms. This may seem nearly impossible and like an exaggeration, but think of it this way: the brain is the control center for the entire body. If there's an issue in the brain, then virtually anything in the body can go wrong, because the brain is the commander of every organ, cell and function in the body.

For me, the part of my brain that has been most affected by the disease is my autonomic nervous system. The autonomic nervous system is the part of the brain that controls most of your bodily functions that you don't have to think about. It controls your heart rate, blood pressure, breathing, body temperature and stomach function. In the conventional medical community, they call this autonomic condition Dysautonomia. Doctors are seeing it more and more in young female adults, but since Late Stage Lyme has gone unrecognized, conventional doctors "have not discovered the cause". A patient with Dysautonomia is most often bedridden, because when they stand up, their brain forgets to send the correct signals to send blood to the brain. This means a significant drop in blood pressure upon standing, along with an increase in heart rate, because the patient's heart must try to beat overtime to get blood to the brain so the patient doesn't faint. Testing revealed that for me, when I stand up, my heart rate always reaches between 120 and 145 beats per minute, without even having taken a few steps yet. This is often a target heart rate for someone that has been running on a treadmill for over 25 minutes. This is a typical characteristic of the condition. As a Lyme and Dysautonomia patient, I also experience difficulty breathing, as though someone is sucking the air out of my lungs with a vacuum cleaner, my stomach does not contract or digest food properly (if at all), and I can't warm myself up or cool myself down, to the point where my unstable body temperature effects the function of my heart. The room is constantly spinning and unstable, and for duration of the time I've been diagnosed, I've felt like I've been living on a rocking boat.

The conventional opinion about Dysautonomia is that it is a lifelong illness, and that a patient must adapt to their new sedentary lifestyle. Lyme literate physicians believe otherwise though, and believe that it is often caused by neurologically based infection, and that a patient has the potential to get better. I am choosing to believe this too. The unfortunate thing is though, that many undiagnosed lyme patients that have other neurological diagnoses such as MS, ALS, or Alzhiemers don't have doctors that are educated about and open to Lyme Disease. These patients are forced to accept their fatal diagnoses, and the notion that they won't ever regain their lives and strength, when in fact that may not be the truth.

Late Stage Lyme Disease can cause a multitude of symptoms and conditions. One of the most disabling and isolating ones though that I also suffer from is "Multiple Chemical Sensitivity", or "MCS". This phenomenon occurs when a Lyme Patient becomes too "toxic". When the Lyme bacteria replicates and dies, it creates toxins in the body, and some patients have difficulty eliminating those toxins. These toxins are harmful to every organ in the body, but are most detrimental to the brain. They call them "neurotoxins". In a patient with Multiple Chemical Sensitivity, their body has become so toxic inside that it starts reject all of the chemicals that surround them outside of their body. This means that a patient becomes increasingly ill when exposed to perfumes, fabric softeners, hair sprays, gasoline, and just about anything made up of toxic synthetic materials. A healthy body has the capacity to absorb and then filter the chemicals, but a MCS patient's does not. Since my autonomic nervous system is what is most affected by the disease, when I am exposed to everyday chemicals like Downy, lotions, or hairspray, my heart rate becomes erratic, my blood pressure drops to dangerous levels, the room spins, and I begin to lose the ability to do simple things like speak, breathe, or walk. This is why I, and many other patients like me, can't leave the house anymore. When I do, someone typically has to scrape me off of the floor.

"Neurotoxins", the toxins released from the Lyme bacteria, are also responsible for the reason that Lyme treatment is much like treatment for Cancer in that it makes a patient violently ill before it makes them better. This is why it takes a Lyme patient so long to heal, and why they become so disabled instead of stronger on treatment. Treatment brings about horrendous symptoms ranging from dizziness, chest pain, twitching, painfully heightened senses, widespread pain and burning, exhaustion and seizures. For me, treatment has been an uphill battle full of ER trips, days on the couch, and long trying nights. Sometimes when the bacteria is dying off, it makes a patient feel like they're about to go with it. But despite the tumultuous days that treatment brings, and despite how frightened and disheartened they may be, patients still must forge ahead because it's the only way out.

Lyme Disease, Dysautonomia and Multiple Chemical Sensitivity have a way of making a patient's world seem very small. Just knowing though that someone close to me has read this and may understand me a little better makes my world seem so much bigger. Thank you so much for hanging in there through all of the information presented in this letter.

Please be patient with me throughout my battle. I know it can be frustrating when I can't attend things, cancel plans, or fail to keep in touch. I get frustrated with myself and my body too! I also know that a lot of this is hard to wrap your brain around since it's so out of the norm. I ask you though to please hang in there with me through treatment and the ups and downs of this disease, because one day I will be in remission and will be out living life with you once again.

Thank you for taking the time to step into my world for a minute. Take care of yourselves!


Thank you Candice.....

Monday, August 2, 2010

New Treatment - Day 40 & A Dream...

I really don't have much to write as an update...Things are (irritably) stable... Due to a technical issue my results from IGeneX need 10 more days to be ready. I want to see the results first and then decide on the SPECT. I can go to Istanbul 4-20 of August to have it there, or wait till mid-September to have it here in Athens. We will see... Still no major herx reaction yet. I'm just weak and tired and I sleep a lot during the day, since I cannot sleep early at night. Maybe it's because I messed up my medication doses....I was SO upset a couple of days ago, when I suddenly realized that I've been taking 1 Malarone a day, instead of 2, and half the daily dose of Doxy (Vibramycin)..!!!!! Well, this can happen when you have to remember everything by yourself AND be sick at the same time. I am x-tra careful now, because the last thing I need is to be lagged back on treatment.

Lately I am having very strange dreams as well as many of them! I don't know if its the drugs, but every time I sleep I have a very very weird dream..lol...When I wake up I try to understand if there is a meaning behind it...usually there is not...but last night's dream made me feel something strong and positive. I will share it with you because I would love to hear your (any) comments on it:

I was attending a wedding with some friends. I don't remember who was getting married or which friends were with me. I was healthy of course (as in all of my dreams) and we were all inside a very shallow and calm sea! The ceremony was taking place into this shallow sea...The water was warm and knee-high. Suddenly, I turn my head and see a HUGE tsounami-like wave, slowly coming towards us from far away. I screamed and started running really fast out of the sea, the beach, through a village, until I found a building with many stairs, so I started climbing up the steps. I was rather high up the building when I saw a door, opened it, and an old man appeared and said "Your friends went this way". In fact, there was only one way, but I felt I had to check if it was the right way to go. So, I stopped and stayed still for a while. I looked around and everything was quiet. I looked down and saw the wave had become small and started heading to the opposite direction. I felt immediately safe and happy and continued my way, the only way, the way my friends went, walking not running anymore!

I don't know much about dreams interpretation, so any help is welcome! I can handle bad news too, but I cannot believe this could be a bad dream :)
Well, I'm heading to bed now...I wonder what will be on Georgia's t.v. tonight...

Wednesday, July 21, 2010

New Treatment - Day 28 / News on SPECT

It's been a while since my last post, so I thought it is time for an update..

Unfortunately, IGeneX blood test results are not back in yet. Today is exactly two weeks since I sent the blood and they are in California, USA, so I guess its not that bad....yet:)

Now, about SPECT... I believe I never explained what it is. Single photon emission computed tomography (SPECT, or less commonly, SPET) is a nuclear medicine tomographic imaging technique using gamma rays. It is able to provide true 3D information. The basic technique requires injection of a gamma-emitting radioisotope into the bloodstream of the patient. This radioisotope actually is the reason why I haven't done this test yet. As my doctor told me last Saturday, the 2 radioisotope-providers (in Canada) of the hospital doing SPECTs here in Greece, have a major problem in production, therefore no radioisotope-no SPECT! They estimate that the problem will be solved in September... The good news is that the Turkish doctor who conducts SPECT here in Greece, came anyway, and my doctor who works closely with him arranged me a consultation. The even better news is that this doctor, except from a nuclear medicine physician specialized in neuroinflammatory diseases, he is also Lyme literate!!! He was very interested in my (as he said) "complicated case" and we discussed for a long time. He excluded the possibility of ALS, and by looking my MRIs, history, tests and treatments so far, he thought that it is something we can win! He also suggested that I should go and have the SPECT in Istanbul, Turkey asap, because he wants to see what exactly is going on in my brain. We'll see... When I told him that my goal is to recover by at least 90%, he said: "But you can't salsa with 90%......We'll go for 100%, ok?"

In the meantime, I continue my antibiotic treatment with some small changes... Stopped Avelox, replaced it with Doxy (Vibramycin) and Malarone. Also added Carbatrol (Tegretol), which is btw, a very tasty syrup-yummy:)

I feel tired and sleepy most of the time and my knees hurt, but I have to note that my twitching is a little better, my left thumb (which was the worse-looking and moving) feels a little stronger, and my tongue (which was white-coated and "cracked") is pink and pretty again! Well, it is too soon for anything...I know I have a long and difficult road ahead, but I have a feeling I'm finally moving into the right direction.

Wednesday, July 7, 2010

New Treatment - Day 15

I don't have much to say, things are more or less the same. I am still on Zithromax and Avelox protocol, after a 4-day break from both, for monitoring my symptoms & side effects which haven't really changed. I had a general blood test and liver profile after the first 10 days of antibiotic treatment... Everything ok, within normal range! Funny isn't it?... Being so sick but blood tests looking so great! However, I will have my blood and liver tested every 2 weeks...
I also had some blood sent to California, to finally have the Western-Blot by IgeneX Lab!!! Yayyy:) The WB by IgeneX is maybe the ONLY reliable test for Lyme disease. So I have to wait for their results, probably for around 10 days!
I also still wait for the SPECT test! The SPECT scan is very new in Greece. There is only one private hospital in collaboration with a foreign Doctor (specialist) doing the test, whenever this Doctor comes to Greece. It was supposed to take place a few weekends ago for a group of people including me, but was canceled so we have to wait for a new date now...

Well, I'm busy waiting lately, but what can I say?....

Sunday, July 4, 2010

Lyme Diet & Nutrit. Tips

People with Lyme disease or any neuroinflammatory illness should follow a special diet, free of sugar, gluten and casein. I strictly follow such a diet for about a year now!
Here is the information I gathered and organized, based on my Doctor's instructions and Dr.Burrascano's guidelines (http://www.lymediseaseassociation.org/BurrGuide200509.pdf)


ALL PROTEIN FOODS, such as meat, cheese, eggs, tofu.
Fish, mussel and shrimps are strictly prohibited though, because of heavy metals.

- (walnut, hazelnut, pistachio, sunflower seed, cabbage seed, almond etc). They have rich amino acids and minerals (zinc, selenium, magnesium etc). 1-2 full-hand/s daily (25-50 gram) is very beneficial. They should be preferred as raw and low-salted.

FATS - Limitation of fats is harmful for the body. Contrary to known, foods with less fat but with high sugar levels, make people get much more hungry and fat.

OLIVE OIL - Perfect! Especially extra virgin olive oil should be preferred.

- Any kind can be eaten. They should mostly be consumed raw. Dark green leaves are rich in vitamin K, calcium and magnesium, in addition to omega 3 fatty acids. As greener as the vegetables are, they contain higher level chlorophyll, which means they can detoxify heavy metals and toxins. If urinary oxalate levels are high, limit the vegetables and fruits rich in oxalate (egg plant, spinach, unpeeled cucumber, blackberries, blueberries, kiwi, beets, green beans, parsley, green peppers, sweet potatoes etc.)
Avoid or limit starchy vegetables (potato, rice, beans, etc.). Fried potatoes should not be eaten at all. Small amount of potatoes can be added to vegetable meals (because of high sugar content).

SPICES - Because of their vitamin, mineral and antioxidants, they are very beneficial. Be careful they should not be molded.

PICKLES - They are quite beneficial and rich with probiotics. Because of high content of betain (DMG) beet pickle is very beneficial. Lessen the salt of pickles (while preparing the pickles use lemon salt, ascorbic acid or vinegar, instead of salt). Vinegar (especially extra grape vinegar, balsamic vinegar) is very beneficial.

WATER - Drink as much as water until color of your urine not dark. Do not drink cold water. First preference is natural springs water rich in some minerals. But they can contain some heavy metals. As usual, if you are not sure about ingredients of the water, then filter it with a help of quality filter. Do not drink water with meals, because it decreases the effects of digestive liquids by diluting them. Half an hour before and after meal you can drink water. It is advised to drink one or two glass/es of water before sleeping.

Fruits may be a problem because they contain a large amount of sugars. However, if the fruit contains a lot of fiber, this may make up for the sugars to some degree. Thus:
• Fruits are only allowed at the end of a meal, and never on an empty stomach
• Only high fiber fruits are allowed
• Only very small amounts!

Grapefruit, lemons, limes, tomatoes, avocado
ALLOWED IN SMALL AMOUNTS ONLY! (The high fiber content in these hard, crunchy fruits partially makes up for the carbohydrates)
Pears, apples, strawberries, cantaloupe, etc.
NOT ALLOWED (These soft fruits do not have enough fiber)
Oranges, watermelons, bananas, grapes, etc.
No fruit juices either!

: Strictly prohibited.

LIQUID SEED OILS (sun-flower, cotton, corn, soy and ext..): They should not be used or used very little. They destroy the ratio of omega-6/omega-3 to the benefit of Omega-6. These hot pressed produced oils have oxidative characteristics.

None!! If it is made from flour it is not allowed. (No breads, cereals, cake, etc.) Products made from gluten free flour can only be consumed. There are a lot of different brands with their different range of gluten-free products.

No sugars at all, and no fructose or corn syrup
ALLOWED (if tolerated)
Stevia (safest), honey, and Splenda. Saccharin products are not recommended. Especially aspartame (found at diet coke, sugar free gum and many diet foods) can cause many side effects, including depression.

Water, seltzer, coffee and tea without sugar or caffeine, vegetable juices
Fruit juices, regular sodas, and any drinks sweetened with sugars or syrups
No Alcohol at all!!!!!!!


Do not skip any meals. At least three regular meals daily are needed; a better option is to eat very small portions but have between meal snacks to maintain blood sugar and insulin levels. Bedtime snacks, if taken, must be totally carbohydrate free!
Foods should be cooked with their own water slowly; traditional ways (steamed way) and oven with turbo can be used. This way does not harm their nutrition harmed too much.
Fast cooking ways (such as microwave) cause loss of nutrition, and can be carcinogenic.
Do not consume frozen foods too much.
If it is possible, do not consume preserved foods at all (except home made).
Do not wrap hot foods with aluminum foils.
For cooking prefer earthenware or glass pots. Enameled and steel pots are next preferences.
Teflon and aluminum types should never be used.


Auto exhaust
Amalgam tooth fillings
Drinking waters
Ear and nose drops
Some vaccines (hepatit B, HiB, flue)
Contact lens lotions
Fabric softener
Talk powder
Wooden preservatives
Floor waxes and polishes

Auto Exhaust
Waters reaching home through lead pipes
Permanent lipsticks
Vinyl school bags
School materials
Textile colors
Drinking waters


Cooking pans
Drinking waters
Vaccines such as Pneumococus, Hepatitis A, HPV

Tuesday, June 29, 2010

New Treatment - Day 4

As my American friend J. said: "The fight is on and ur kickin the lymes ass!!" :))
So as of last Wednesday, I started my new treatment protocol:

  • Avelox 400mg a day
  • Zithromax caps. 250mg twice a day
  • Fluconazole 100mg a day
  • Nystamysyn/Farmasyn syrup 400.000-600.000 IU (4-6ml) 4 times a day
  • Milk Thistle Quest 150mg twice a day, (after 2 weeks 3 times a day)
  • Effexor-XR PR. CAPS 75mg
  • Culturelle (probiotics) 60-80billion units a day divided in 4 dosages
  • CoQ-10 200mg a day
  • Alpha Lipoic Acid 200-300mg a day
Well, it is the first time in these 2,5 years that “real weapons” are used. I was religiously away from any chemistry, so I guess my body is rather shocked now. The Avelox is making me nauseous in my stomach (I feel like throwing-up, but I don’t) and dizzy. The rest of the medications seem ok (for now)! In general, I feel a little worse; weaker, more twichy (involuntary small muscle-movements), can’t sleep easily, stiffer joints…but I hope this is a good sign. I kill the bacteria now, so it supposed to be normal to feel worse during die-off. This is called a herx. The Herxheimer reaction occurs when large quantities of toxins are released into the body, as bacteria die during antibiotic treatment. More on herx : http://www.lyme.aquahobby.eu/herx.html

After all, it’s only the beginning of the “battle”, so I try my best to keep my spirits up, as I have a long way ahead. But if this treatment can heal me, who cares about some herx ????? ;)

SPECT test probably in the next 2 weeks! I will write sooner though.

Tuesday, June 22, 2010

Time for antibiotics!...

Time for an update, since I am taking a big turn in my journey through this disease... I am starting antibiotics......Finally!!!:)

I guess the naturalistic/holistic way is not enough for me. After a full 6-month period on Dr.K's protocol, nothing improved. My skin' stem-cells haven't helped either....at least not yet! On the contrary my balance and walking has worsened. I had a major fall last month and got so terrified (hit my head hard), so I got myself a "walker", to move safely inside the house!

I still follow a gluten/sugar/dairy- free diet and I do intensive physiotherapy & (small) weight lifting to increase muscle tone and strength. Fortunately my muscles respond well to that. I had a hard time rising my hands up, and now I can do it :)

I have done some more HBOT sessions, but I stopped for a while due to herxing (die off of bacteria and toxins) and extreme fatigue. I will start again soon though.

I had a blood test showing very low WBC and high ammonia levels. Everything else rather normal. I will have blood tests every 2 weeks as soon as I start antibiotics, to monitor my liver.

I also had a urine test called DMSA, for heavy metals investigation. Results within this week.

The last test I am taking, is a SPECT scan, in order to see my brain in detail. I will write about that in my next update.

Don't forget to mention that the Western-blot (test for Lyme) I had last year here in a Greek lab, and was told it was negative, actually it is positive!!!!! I had 3 positive bands, which certify it as positive....Oh well!

I will update this soon, with SPECT details and my new treatment protocol!

Thanks again for reading and for being "here"...