Monday, November 22, 2010

Consumed with research

I went to a party at a friends house about 2 wks ago and as I was talking to a friend about my recent health issues another lady who I had just met suggested that I get checked out for Lyme's Disease. She went onto say she knew it was weird to suggest, being she doesn't know me but a friend of hers just happen to recently be telling her that if she knew anyone who had medical issues that nobody could figure out to tell them to get checked for Lyme's. I thought "what the heck, it can't hurt at this point", so I asked her to email me the information her other friends had.

About 3 days later I received an email with a link to an essay that a Dr had written about this disease and when someone should suspect they have it. As I read this article I thought "wow, this is talking about me!" Almost every single "symptom" that someone who has undiagnosed Lyme's disease I can say I've had at one point in my medical history. In fact, as I read and read this 11 page report, I thought to myself "WOW, maybe I've had something like this for longer than anyone realizes and I've been living with this most of my life?!?!?"

The question now is "do I have Lyme's Disease or one of the co-infectious diseases that can cause Lyme's symptoms??" If so, it's a matter finding out WHAT is plaguing me and the treatment is antibiotic therapy for the rest of my life. Could this mean that by taking a pill everyday for the rest of my life I could possibly feel like the rest of the world and enjoy waking up each day, enjoy doing things other than lounging around feeling like crap?? Could I really feel like a real person again that is actually living their life? Instead of someone who is just taking up space and feeling like I never want to do anything because I have no energy, no motivation and feel like crap?? WOW, the possibility of this is super exciting to me! But now, where do I being??

Along with the information that was sent to me was also a Dr's name in Colorado Springs. I tried calling them to make an appointment but was informed that without a referral form my Dr they won't see me. That felt like a ton of bricks crashing down on my hopes. I told the lady on the other line that my insurance doesn't require a referral and she responded with "our Dr's require one so when you get it call us back." I just sat there with an empty feeling. I really want to bypass seeing my Dr and get right into digging into this mystery. But obviously this isn't possible and I have to go through the process as they require.

So my next call was making an appt with my family Dr. While making the appt, the scheduler asked me what I was needing to come in for. I laughed and told her "what don't I need to be seen for" - she paused for a minute and said, "well, please let me know what you are coming in for so I can schedule the right amount of time", I proceeded to let her know that I need to discuss with my Dr many health issues I'm experiencing and the possibility of some infectious diseases I think I could have....she went ahead and scheduled the appt for the 30th, I have no idea how long she scheduled it for so hopefully it's a good amount of time as I'm going to need it.

I'm sure when I present to my Dr all the research I've done he is going to be quite surprised and hopefully will take this and me seriously...if not, I think it's time to find another Dr. I've been seeing this particular family Dr for at least 12 yrs now so he has a pretty good file on me and I'm pretty confident he'll do what I tell him I need him to do. Right now, until the end of the year, my insurance deductible is met, so now is the time to do any and all tests possible as it's 100% covered for me. I don't care if I have to be poked and scanned a million times, I want them to do what needs to be done to get to the bottom of all this.

So you might be wondering, what exactly are the things that would come along with Lyme's disease and what is the "co-infection" she mentions above. There are many co-infections that could cause LD symptoms and that are very similar to LD.

LD is transmitted by receiving a tick bite. I can't recall at anytime in my life being bitten by a tick, however when I was a young child, under 5, did spend some time living with my grandparents in Ohio - they lived on an acre of property that was surrounded by woods that I played in all the time - potentially I could of been bitten by a tick at some point during that time and not know about it - unfortunately my grandparents are no long with us so I can't ask them and my parents don't recall ever knowing about a tick bite. So if I have never been bitten by a tick that leads me to believe I could quite possibly have one of these similar conditions that are transmitted by fleas and mosquitoes....definitely we know I've had my share of those bites in my lifetime, the most recent with an illness following was 5 yrs ago as I had shared in my last posting.

The specific infection I'm going to look into is called Borrelia burgdorferi and is thought to be transmitted by fleas and mosquitoes. Based on everything I've read, this particular bacterium can cause LD. All of the information and symptoms I've suffered from for so long lead me back to this potential.

I fear that all this might sound really extreme to my Dr but at this point I don't care. I've had so many things wrong with me for so long that I can't live like this anymore - I want to be free of illness, fatigue and chronic problems. I'm also quite worried because there are a number of laboratory tests that doctors may use to try to detect LD but they are notoriously inaccurate, often producing "false negative" results, i.e. showing that a patient does not have Lyme disease when in fact they do. The reasons for this are due to the fact that the Borrelia burgdorferi spirochete is so adept at evading both our immune cells and conventional bacterial detection methods. There are 300+ known strains of Bb so it's painfully obvious that this is one elusive bug. Currently I'm searching out what specific blood tests are most accurate to detect this infection. It's like nailing jello to a wall, it really is. From all I've read, people who have this particular bug repeatedly receive negative results from blood tests - not really great in raising hopes of finding it.

On the other hand, although all my various symptoms seem to point to this or something like this, I worry that I in fact don't have this and will be told that there is nothing that can be done for me - that is my biggest fear...I guess we'll cross that road if and when we get to it.

Of course, as I am preparing to post this blog entry, I am suffering from a cold that just got hold of me this past weekend. That's me, always sick with something! It might seem I make light of this but what else can I do?

Friday, November 19, 2010

What's wrong with Gerri?

That's the question without an answer.  For years I have had illness after illness with no real reason as to WHY.  You name it, I've probably had it to some degree.

Let's go back in time for a quick rundown of my medical history as I can recall it.  Now keep in mind my memory doesn't always serve me right so I might forget or leave some things out, but I think this will give a good time line on my health...or lack of:

Age 6-15 (ish) - I can remember I was always sick with a cold or not feeling really well.  My mom took me to the pediatrician often and he never could pin point why and I believe just told her "it's the way she is"....even to this day my mom mentions how I was a "sickly child"

Age 15 - Diagnosed with Mononucleosis AKA "mono" or "the kissing disease" - This is a very common disease that is caused by the Epstein Bar Virus.  If you want to know more about this, here is a great link with info about the disease.  Mononucleosis/Epstein Bar Virus

Age 18 - Had Viral Meningitis which was diagnosed via a Spinal Tap - This was the sickest I had EVER been - I remember I was living on my own and my boyfriend came over one night - I had him take me to the ER as I knew something was terribly wrong with me - sure enough......little did I know this would be the first of several times that I would deal with this infection in my lifetime.

Age 18-25 - various colds, flu, strep, bronchitis and what not but more than what would be considered "normal" - at one point I had been diagnosed with "panic attacks" and "chronic fatigue syndrome" which I believe is also a common "side effect" of EBV and Mononucleosis - Chronic fatigue syndrome is a condition of prolonged and severe tiredness or weariness (fatique) that is not relieved by rest and is not directly caused by other conditions and isn't something that can be diagnosed by a blood test - it's more of a "symptomatic" diagnosis which sounded good to me at the time my Dr diagnosed it.  The panic attacks just so happened to come pretty badly around the time Glenn and I were planning our wedding, so the Dr attributed those to all the stress of that.  At present, panic attacks are no longer present

Age 25-35 - over the course of these years I faced another bout of Viral Meningitis as well as numerous colds, flus and bronchial infections.  Again, nothing "new" I was always the one who would get sick and be sick longer than normal than most people - just "how I am" I guess

Age 35 to present -  Another bout of viral meningitis, Encephalitis, several colds, flus, bronchial infections and a really weird rash that covered my left thigh and left forearm.  This rash was under my skin, non painful and pretty ugly...once again, nobody would figure out what it was or why I had it.  Most recently I had bronchitis which turned to pneumonia, then I suffered from "vertigo" along with constant feeling of being dizzy accompanied by debilitating headaches which were considered "migranes" - at present I am still experiencing headaches but not as constant and extreme fatigue that I battle on a daily basis which can be chalked up to the CFS (Chronic Fatigue Syndrome).  On a daily basis I just feel "blah" and have no real energy to do anything.  It has been suggested that I get out and exercise to increase my energy level, however, that just makes me even more tired.  I feel like I'm going in circles and need answers.

So as you  have read, I have had my share of illness over the years and at this time am ready to dig into all this and try to figure out what is going on.  Currently I am doing a lot of research and have actually come upon some information that I think might  just be the tip of the iceberg - I think I'm onto something here.

Once again let's take a little excursion but we're only going to go back to 2005.  It was April or May that year that I attended our annual Convention in New Orleans where it's held every year.  That particular year it was just after hurricane Katrina had hit the area.  I stayed with a friend for a few days while there and the rest of the time stayed in the hotel, The Marriott on Canal St.  I distinctly recall that year having been biten, or rather "eaten alive" by what I thought were fleas - they were very small bites all over both my calfs from my feet to my knees.  I'm pretty sure I received these bites at my friends house as she did have cats at the time, however I can't be certain, it could of been while out walking around or even in the hotel, but that's irrelevant at this point in time...the fact is, that I had these bug bites in mass quantity all over both my legs. I really thought nothing of it other than what a pain it was because they itched SO bad.

Now jump ahead to when I returned from that trip.  A few days after returning home I began to feel ill.  Developed a rash on my chest, flu like symptoms and then a week later was in the hospital with, what the Dr said was Encephalitis - I was fricken sick, let me tell you.  The Dr who treated me didn't do a spinal tap as they felt I was more than likely on the downhill side of the virus at that point - based on the fact that I had reported the bug bites, they also said they would call it "west nile" if it were the season but felt pretty confident that it was a meningitis/encephalitis related and I would just have to "ride it out".

Encephalitis can be caused by West Nile (transmitted by insect bites, primarily mosquitos or fleas) as well as numerous other viruses such as the "epstein bar virus", "lyme Disease", "Rubella" and "shingles" to name just a few on the extensive list of potential causes for the illness - now mind you, most people never get meningitis once, let alone several times and all these times I've had these serious illnesses, not one Dr has ever really questioned WHY - and honestly up until now, neither have I.  I guess it just takes getting to the breaking point for someone to stop and ask why, and start to dig into what could be going on that is causing these things to happen.  That is where I am today....I'm at my breaking point.  I want to know WHAT is going on inside my body that is causing me to have these major illnesses every 3-5 yrs.  WHAT is it and WHAT can be done about it.  I'm sure whatever I find out is going to be something that I'll have to manage forever, but at least I'll know and can do what it takes to help me feel better.....anything is better than how I feel now.

Well I think that's it for today, that's a lot to absorb.  My next entry will dive into the research I've been doing and what I personally think is going on.  I could be totally off base but I think if nothing else, I'll get the attention of my Dr. and hopefully start on the path to figuring it all out.

My appointment with my primary care physician is on Nov 30th - that's the day this journey really begins.

Wednesday, November 17, 2010

Just starting is a good step

I've been meaning to start my own blog, well for over 3 yrs now.  I'm not sure what, but something kept making me ignore it.  Maybe the fact that up until now, I really have had NO idea what I would write about, what the purpose of it would be or why I even wanted to write one.  For anyone who is or will be following me, thanks in advance for your interest in whatever it is I'm going to share with you.  I have a little smirk on my face now as I know how silly, crazy, serious, wildly profound and just down right REAL I am, this should be a fun adventure for us all!  Let me say this and please use it as fair warning - I am one who doesn't "fluff" things up, I get straight to the point and don't beat around the bush.  I am brutally honest so if you are one that gets offended easily, let this stand as your fair warning - I say it how it is, and worry about how it sounds later - good or bad, that's how I am.  I can say, I always mean well, even though sometimes it might not appear that way.

I must say, I've had this post sitting as a draft for several days now and for some reason am hesitant to get it going - I think it's because I just don't know where to start after this initial entry.  How do I start this and get caught up to current day...I guess again, just starting is a good step.  So here we go...I'm just going to do it...and worry about the what later.....

As I am getting started I currently plan on using this to document my days in terms of my health and general well being, or lack thereof.  It could be a really great book by the end of it, who knows!  My main reason for starting this blog now is because of my ailing health.  I've been sick for quite a while with no real "diagnosis" or reason as to why.  Throughout this blog you are going to learn about many things I've been though and just how crazy my health has been for many, many years - in fact most of my life although the past several years has been the worst of it. 

I hope that as I embark on this journey to find out what is going on within me I might also end up having followers that can find useful information or even help someone else who might be suffering from the same things as I do.  I know I can't be the only person in the world who has a general lack of well being and lack of health in their life - and not because of lifestyle, I'm afraid it goes way deeper than the surface and superficial things.  I should be a relatively healthy person.  I don't smoke (anymore), I don't use drugs and I don't drink except on festive occasions or special occasions - I'm a social drinker if you will.  So all in all my "lifestyle" wouldn't necessarily be the cause of my health problems.

So let's get started with who I am and where am I in my life right now before we dive into all the medical issues I'm having....probably would be a good idea for you to know WHO I am and a little of what my life is like.......

I'm a 40 yr old woman, mom of 2 great kids and wife to a wonderful man for the past 15yrs.  WOW, 15yrs seems like such a long time, I remember when I first met him, his brother had been married for 15 yrs, the thought that I had at that time was exactly the same "WOW, seems like such a LONG time" - in all reality, it's not, it's just a glimpse of time in the grand scope of things.  In fact, the past 15 yrs has gone by so fast it's hardly believable that it's been that long. 

I have two beautiful children, ages 11 and 9.  My 11 yr old daughter is in the 6th grade this year and my 9 yr old son is in 4th.  They have grown so quickly I can't believe how fast time seems to go anymore.  I remember when I was a kid, it seemed like the days just dragged on and on and on.  I wonder if it feels that way for kids today.....mine are busy so I don't think the days drag on for them, but maybe they feel the same way.  I almost don't want to ask them as to even put the thought in their heads...they never mention it so I think I'll leave that one alone for now.

Speaking of kids today, I'm a bit frightened of what lies ahead as my kids get older.  All I have to go by is how I was at my daughters age and that scares me even more!  I wasn't, let's say, the best of young ladies while growing up.  I got into quite a bit of trouble starting right around the summer out of 6th grade heading into 7th grade, although I really didn't get into too much trouble until I hit high school.

So as a parent with what I think is quite a bit of "life experience" I am ready and waiting for the fun times to begin.  Although I can say with pretty certain confidence, that my daughter is a really "good" kid, honest and not up to anything that I would "disapprove" of.  My son falls in the same category, however he is still young and under full parental control.  I do believe it is at or around the 6th grade mark that kids start to find and explore all the good and bad things the world has to offer.  When the apron strings get loosened a little more and a little more freedom to do things on their own (such as riding the bus and walking home from the neighborhood park) is given out.  So far, so good.  Aside from the normal attitude, tantrums and fits they seem to be pretty normal, average kids.  I want to keep them this way forever!  Although I know I can't, it's a nice thought.  They are pretty much self contained, can care for themselves in the basic kind of ways and don't require constant care in the way that a baby does.  They aren't out driving, dating and, oh god I'm going to say it - having sex YET......thank god!  That's an entirely different post way WAY in the future - I mean WAY in the future!  Both kids are in Karate which has been great for them - currently they are at the "blue" belt level and love it.

My husband Glenn works outside the home as a plumber.  He has done this most of his adult life and is great at what he does. He is my best friend, constant supporter and the person who keeps me going on a daily, sometimes on an hourly basis.  Without him, I don't know where I would be - he is truly my soulmate, my everything and means the world to me.  He too is now in karate and enjoying it. 

I spend my days at home being a mom and working.  I own my own business which requires me to spend a lot of time on the computer, phone and doing things that a business requires.  I don't have any employees as my business is a "home based business" so it's just me that does it all from the paperwork to the actual work - needless to say I'm usually pretty busy between my business, running a family and home.

My business is "Slumber Parties by Gerri"....it's an adult party plan business - tons of fun!  I've been doing this since Sept 01, just over 9yrs.  For the past 5 years I've been on the Advisory Board with Slumber Parties which has enabled me to work on the corporate side of the business as well.  I have thoroughly enjoyed every minute of my own business as well as serving on the board with the company.  This year is my last year as a board member with the company so it's bitter sweet as I hate to see that part of my business come to an end.  I am also so very thankful that I have this business as with my health issues there is no "employer" out there who would keep me around with all the days, that have led to months of being sick.  It's a true blessing that I've been able to be my own boss and work when I can and take time off when I need to.

I'm going to start my next posting with a brief overview of my health - but for now, this initial post is long enough.