Alex Continues to Search for the Cause of His Debilitating Symptoms

12/7/2011

Chris:  Ok, let's begin.. Alex, thanks for taking the time to share you story with me!

Alex:  Hey Chris, I'm really glad that I am part of the MD Junction Lyme community, as it has opened my eyes, and I believe that I am finally on the right path to get a proper diagnose after battling a bunch of debilitating symptoms for over 7 years.  

You and many other members in this community have helped me a lot and I highly appreciate it.  

I would also like to mention that yes, I have been bitten by two ticks when I was about 10 years old, found them stuck on my right side of my neck and one of my aunts has removed them with her hand. I believe that's when I got infected (I might be wrong though) ... never had a bull's eye rash on my skin or don't remember having one....... and never had any symptoms until I turned 19....

Chris:  Alex, you don't actually have a positive diagnosis for Lyme Disease yet but what has led you to believe you may have Lyme Disease?

Alex:  No, I don't yet have a diagnose, but I am going to get tested in January and hoping to get an accurate result, get a proper diagnose and a proper treatment if I am infected with the Lyme bacteria. Even if the test will come negative, I won't stop there, I will take another one when I will afford it........ I know that many times the lab tests come back negative but still people are infected.   

Mainly, I have been reading over 100 stories from Lyme patients and my story and symptoms are just so similar to what other Lyme patients describe. I have over 100 symptoms, had them on and off in the last 7 years, but my main concerns are the debilitating headaches (pressure like headaches), pain at the back of my head, cervical pain, severe fatigue, muscle and joint pain, loss of balance, muscles spasms and twitches, dizziness (the dizziness is very similar to the dizziness that you'd have when you're drunk), brain fog and an overall feeling of being sick. 

Don't get me wrong I WISH and HOPE it's not Lyme disease, doctor's have been telling me on and off that it's all in my head, but something is telling me that something is really wrong with my body and I and many other Lyme patients believe that I have Lyme based on my symptoms, the tests will tell, the truth has to come to the surface somehow. 

I've been diagnosed with anxiety, panic attacks OCD, depression, ADHD, cervical spondylosis, arthritis, chronic sinusitis. The weird part is that I have been a very healthy teen until the age of 19 when out of nowhere I started feeling ill, and immediately got diagnosed with some seemingly severe diseases. Something is just not right.....

Chris:  In 2004, you were picking olives on a farm near Verona, Italy. A couple days before, you had experienced some weird symptoms. Were these your initial symptoms and could you describe them in detail for me?

Alex:  I clearly remember that when I left Romania, back in that very day I was feeling very healthy. A few days later, when I arrived in Italy (about 10 days later) I started feeling severely fatigued, agitated, anxious, confused, nausea, had a buzzing sensation in my body, I also had a shaking like sensation that I never had before, felt like I was falling off my feet, feeling like I would faint, I thought I was going to die, nothing made sense, I was so tensed that I couldn't talk, I didn't know what was happening to me, everything around me seemed weird: The people, the cars on the street, everything seemed weird, it's a sensation that I cannot clearly describe in words, but honestly I thought I am going crazy, but was trying to hang in there wishing that all those symptoms would pass. I gave me brother a phone call and I told him that "something is not right with me....something is going on with me and I don't know what it is" .... these were my exact words .... 

However, nothing passed, one day right after I finished picking olives at that farm, I also got a severe headache and cervical pain out of nowhere, with a sudden loss of balance, terrible nausea, I quickly became very anxious, also had a feeling that I would faint any minute, everything was spinning with me or moving too fast. I immediately ran home, I don't even remember how I got home and told my uncle to take me to the ER. When I arrived at the hospital, I immediately vomited in front of the hospital, I guess the car motion made me even sicker.  

They put me on a CT scan right away, took some blood tests and the next day they told me that I will be ok, and they don't yet know what's going wrong. Seemingly I did not have any tumors or anything serious going on with my brain so I was happy that there wasn't anything serious yet I didn't know what was going to experience in the following years. They had me pay around 500 euros since it was a private clinic, so in that moment I decided to come back to Romania.  

Chris:  You're from Romania. How is Lyme Disease viewed in Romania?

Alex:  Yep I live in Romania by the Black Sea, in a beautiful city called Constanta. Unfortunately Lyme disease is not recognized in Romania, and I might be a living proof that they haven't been able to find what's going on with me for so many years and yet I feel sick most days. I believe there are only 5 doctors in Romania that have dealt with Lyme patients and successfully diagnosed them and further on gave them appropriate treatments. 

I know that in the U.S. there are Lyme Literate doctors .... we don't have such doctors in Romania, but we're lucky to have roughly 5 - 10 doctors that most of them have studied abroad and are well documented on Lyme disease. 

I believe that Lyme disease is NOT a rare infection in Romania, it's just that people haven't heard about it, the laboratory tests are also too expensive and the treatments are even more expensive so the Lyme infected people will end up getting a wrong diagnose and yet get treated for completely different health issues for years and even decades in some cases, without knowing that they're actually suffering from what is called Lyme (the borrelia bacteria). It's sad but true.......

Chris:  Since your symptoms have started until now, has there been a period of time where they stopped, got worse or got better?

Alex:  My symptoms always change, from day to day, from month to month, sometimes they completely go and sometimes they hit even harder, it's a weird pattern going on. I had times when I felt better, especially when I was taking care of myself, doing a lot of exercising, running, swimming, biking and had a proper diet rich in fruits, vegetables and lots of water.  

Out of 12 months per years I probably feel better for about 2 or 3 months at most. Now I am in a relapse... that I never thought would happen again, I mean I don't even know I have Lyme I don't have a diagnose but something's going on... something IS making me feel terribly sick ..  

I felt better over the summer, actually I still had a depression and OCD (obsessive thoughts without the compulsions, had compulsions back a few years ago, but that's another story) so I felt better physically over the summer, basically I had almost no symptoms apart from occasional headaches and some dizziness and all the symptoms came back again after a stressful period and they came in full force. 

Chris:  In 2004, you had an MRI done that had found 2 brain lesions. What became of this?

Alex:  I had a MRI done in 2004, but the lesions were only seen on the MRI a few days ago when I went to my Lyme doctor. (he told me that I have two brain lesions that are quite visible - he didn't tell me others details but told me that these type of lesions are normal in Lyme and that he often has seen them and that in a lot of cases the lesions also appear on the MRI's of the cervical area).  

I also know that brain lesions are present in multiple sclerosis as well which is obviously scarring me and I am afraid that I would have MS. (actually after some of my own research I've found that a lot of people that are diagnosed with MS also have Lyme, so my guessing is that MS is actually UNTREATED Lyme, that's what my doctor told me as well.  

He has seen at least 500 patients with multiple sclerosis in the last year that were all infected with Lyme...so that's some food for thought. But I shall see.  

I am planning to have another MRI when I will afford it (I am in a bad financial situation at the moment and I don't afford it). I also want to have a complete spine MRI to see what comes up. 

I just cannot believe that the doctor that read my MRI in 2004 hasn't noticed my brain lesions and I had to suffer 7 years, and most of the neurological symptoms might be exactly because of those brain lesions. (medically speaking) Maybe if the lesions were noticed in 2004 I would have been properly diagnosed by now and maybe feeling a whole lot better, who knows, I am just making an assumption. 

Chris:  Have you seen any type of doctor or been on any type of treatment for these symptoms, since they've started?

Alex:  I've seen around 30 doctors since 2004 until now....... apart from the doctors that I've seen in my numerous trips to the ER. I have seen neurologists, rheumatologists, psychologists, psychiatrists and ENT doctors. They all gave me numerous diagnosis: chronic pan sinusitis (inflammation of all sinus cavities, that was also clearly seen on my 2004 ENT), anxiety and panic attacks, depressions, arthritis, cervical, spondylosis. I was also called a hypochondriac.... 

Chris:  In January 2011, you're visiting the largest hospital in Romania to be tested for Lyme Disease. That's about a month away. What is your anticipation like?

Alex:  Yes, I'll be going to Fundeni, Bucharest (the largest hospital in Romania) for the ELISA and WB tests as well as the Dual Durr Dark Field microscopy test that will also be done in Bucharest in a private clinic..  

I am not sure what to say.... but to make it short... looking over all the diagnosis, looking over all the symptoms that I had over the years... all I can say is this - THERE IS SOMETHING wrong with my body, something is making me feel sick on daily basis and I have to find out what's causing it.... and I WILL.  

It's not in my head...... I have real symptoms that are quite disturbing and debilitating. I don't understand how doctors can say that it's all in our heads .. I mean how ignorant and illogical this affirmation is ........... Who wants to live a life of misery ? and who would make up such symptoms? The symptoms are real and THIS ISN'T anxiety...... apart from that ... anxiety is not an illness..... anxiety is a symptom ...... mainly cased by prolonged chronic pain or stress.  

On my last visit to the ER I was sent to the psychiatrist just like every time and I am quite tired to listen to such unprofessional doctors that are unable or just don't want to bother with a proper diagnose, they really don't care about the patients.

Chris:  I understand the symptoms you're experiencing have inhibited your ability to work in some aspects. How is your financial situation going to affect testing for these symptoms and any type of treatment?

Alex:  I haven't been able to work since May this year.......I have been working online for the past few years (it's hard but I had to make a living somehow) eventually since May this year I wasn't able to work anymore and definitely now when all the symptoms are even worse it's even harder for me to work but I have started a new project that I'm working on with small baby steps..... hopefully it will materialize sometime in the future...  

As for now it's really hard for me to even have the tests done, they're a couple hundred dollars, lets alone getting a PROPER treatment if I will need one, I have no clue where I would get a couple hundred dollars every month if I will need an antibiotic treatment and all the other products in the natural protocol, but I hope I will find my way through this somehow.  

My family doesn't really understand my condition and never has, but at least they're supporting me as much as they can so I am pretty lucky from this point of view. Hopefully I will start picking up my "health" and start working full time on my new project.

Chris:  Alex, if this is Lyme Disease, I want you to know that you're not alone. Many people are walking right beside you including me! Be honest with man. What is going through your mind right now regarding all of this?

Alex:  Thanks Chris, appreciate the support, I just can feel the pain that everyone is going through just as many people on the MDJunction forum have told me that they feel my pain.  

I am quite emotional and many of the stories have touched me deeply.... It's not easy...... this illness scre*s one's body, mind, and soul BIG TIME, and in some cases it lasts for decades.  

Sometimes, we're basically NOT functional, you can't function when you're in some much emotional and psychical pain, IT's SIMPLY impossible, but I DO hope that we will all get better soon... with a proper treatment and lifestyle. 

My heart goes out to everyone that is suffering from Lyme, I have watched numerous videos posted online by Lyme patients, and I can see  the pain that they're enduring, that I am enduring and that you are enduring and it's not easy to go through this especially at such a young age.  

If this is Lyme, then Lyme has made me a different person. From a social person to an anxious and isolated person. The depersonalization has changed my life completely and I believe that I would have been a completely different person now if I was feeling sick for so many years...... again I want to point out that I don't know if I have Lyme .... but something is there that makes me feel like this..... 

No one can believe what this feels like, like you're shaking on your own feet, like the ground is moving under your feet, you feel scarred as if you've seen the wolf in front of you, pain and needles through your body, feeling like laying in bed the entire day, a brain fog that is so SEVERE that sometimes I just don't understand what people are saying (I don't comprehend words properly), sometimes I read a book but I don't understand it .... the headaches, the joint pain, the excruciating pain in my cervical area, the anxiety and panic attacks are just horrible... the air hunger and chest tightness..the muscles spasms......... the fatigue that just won't go away.........the constant irritability........ and so many other symptoms that are making our life miserable. And all of this caused by a tick? It's unbelievable but yet, yes the borrelia bacteria can affect many parts of our body including the joints, heart and nervous system...... and in some cases, sadly, it's irreversible.

Chris:  I wish you the best of luck on finding the cause for your debilitating symptoms. Alex, I really appreciate you sharing your story with me and everyone else.

Alex:  I also appreciate your effort Chris for making this awareness for Lyme disease and it's been my pleasure to assist you in your journey to make awareness for Lyme by taking this interview.  

If this is Lyme disease, yes, I hope from the bottom of my heart that I will get a proper diagnose and treatment after 7 years of misery and start feeling better soon. My heart goes out again to everyone that is going through these DEBILITATING symptoms each day..... a healthy person would not be able to go for five minutes with the pain and all these symptoms that we're experiencing ....... without going nuts.... let alone living with them daily...... yet WE have learned to cope with them and fight for our health and life... and I hope that everyone WILL get better and get on with their life and ENJOY life as much as possible.  

Again, I really hope that you start feeling better Chris and everyone that is suffering from this debilitating tick borne disease!  

All the best and God bless us all!