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.
After 3 months of non-stop everyday Rocephin intravenous infusions, it was time for a break and time for my body to detox and re-build. Considering the facts that a) I have been on-off IV (intravenous) antibiotics for about 6 months and that b) this break would last maybe over a month, I had my PICC line removed!! My PICC lasted perfectly for those 6 months, but my left hand could use some serious exercise now. Also I could use some stress-free showers or even swimming! We'll see...(about the swimming I mean).
Good news is that possibly the next drug will be Bicillin shots - IM injections, so no need for PICC. But first we have to see my results from the IGeneX blood-test for co-infections. The common co-infections of Babesia, Ehrlichia - Anaplasma phagocytophila (HGE) or Human Monocytic Ehrlichia (HME), and Bartonella. These co-infections are seen in approximately 20% of the patients with Lyme disease.
Therefore, until test results and new treatment, Doctor's orders say REST, DETOX, EXERCISE. I (try to) sleep a lot, I drink plenty of water, use my detox foot-pads, continue taking all my supplements and lightly work-out daily. Physical therapy is going great twice a week, but I also do some exercises on my own every day, mostly walking and stretching.
Moreover, I'm starting (tomorrow) a number of sessions with a vocal coach, an amazing lady/new friend of mine, who is gonna help me with my speech/voice problem. Correct, deeper breathing and various techniques for relaxing as well as exercising all those related muscles, is what we are going to work on.
Next step, a career in singing...what else? (lmao)
I know I haven't been writing much here, but there is a reason for that...: I don't know what to write about! Plus, I hate nagging and making you feel sad (or even worse, feel sorry) for me, since I really don't have any good news, yet.
In my last post/update I was on detox from Levaquin (Tavanic) antibiotic. Well, the detox lasted 3 weeks and then I was put back on Rocephin (Ceftriaxone) and NOT Levaquin which proved to be too strong for me (for now). So, since February 14th, I am having daily IVs (intravenous) infusions of 2gr Rocephin. Every single day, for half hour. Probably for 3 months. We will see. At least my picc-line is still in great condition. Crazy party-life huh? Anyway...
I also take Flagyl (Μetronidazole) orally, twice a week. The rest of my protocol stays the same. Furthermore, I have a new physical-therapist. She is amazing! We've only done 3 sessions until now, but she has so many new ideas and exercises, I'm getting much more optimistic on this aspect. A lot of stretching, range of motion exercises, strength, balance, walk, and deep controlled breathing with a special exercising tool, is my routine... By the way, I don't have breathing problems, but I have weak abdomen, diaphragm, voice etc, so these tools can also help.
Breath Exerciser
It's harder than it looks! You are supposed to breath-in (suck in air) so much, as to push those balls up.
Well, I promise my next update will not be in 2 months again :)
Hopefully with some good news!
I'm very concerned and sad about my walking...
Well, I don't have much for update but I wanted to write because of the photo below... For those of you who don't know, this guy is "Barney", a character from the sitcom "How I Met Your Mother", played by actor Neil Patrick Harris. Barney is always in a suit and always cool & awesome no matter what! He is hilarious and I love him because he makes me smile :)
However, last week was a tough one! According to my Lyme specialist I'm going through major herx from Tavanic antibiotic. This worsening of my symptoms is a strong indication that treatment works. I hope so, because otherwise it means I'm probably dying... But let's not focus on that scenario, it sucks! So, last week I was very exhausted with too much pain in almost every single joint of my body. I almost could not get out off bed and my walking was difficult even with the walker. I stopped Tavanic infusions for a week in order to detox and feel better. Today I kinda feel better and almost ready to get back on treatment in a couple of days.
As you know I've been trying to be positive, something that's especially hard when things get worse like last week. Very often I get disappointed and sad... But then I come across this photo of Barney and smile...because I know I do the same:
Oh man, I'm too awesome for this crap. I HAVE to get better damn it! And that's a TRUE FACT too :)
P.S. In an effort to "forget" illness, I've also started a new blog on movies. If you read Greek you can follow me there too and discuss movies :))
This is the first post for 2011. I've been trying to write it for quite a few days now. I couldn't. I didn't know what to write... First posts have to be happy, positive, inspiring. I'm not lately... I'm sad, negative, pessimistic, angry, depressed, lonely and totally not inspiring to anyone than maybe my dog Pepe, who is always a happy soul no matter what!
I guess the fact that I haven't been outside my house since December 31st -went to the hairdresser across the street and to my brother's place for New Year's Eve- is not helping me much. I feel "imprisoned", but I cannot do otherwise. I feel so weak, so all I do is sleep, physical therapy sessions, IV infusion sessions and movies on my laptop. Actually movies and sitcoms. A lot of sitcoms. A lot of "How I Met Your Mother" currently. And a lot of sleep. And twitter. It's a phase, ok. It will pass too...
So after almost a month of detox, I started Tavanic (Levaquin) last Thursday. For the first infusion I was supposed to go to the Hospital, just in case I was allergic to this drug. But after some thought and discussion with my nurse Yiannis, I decided to have it home with the presence of a doctor. Everything went just fine, Yiannis did the whole thing, the doctor just checked my heart-rate and stayed for the whole 1-hour procedure. By the way, until now the infusions (Rocephin) lasted half hour daily. Tavanic has to be infused for one hour daily! I'm lucky Yiannis is such a good guy, because I can't imagine having to see a person so much otherwise.
Tavanic it is then, for at least two months and then we'll see. Supplements as before. Ah and I promise to blog more often... :)
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.
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!!
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...
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...
