from my PORT FRIEND, CATHY, NH; her journey! INSPIRATIONAL!Written Jun 20, 2012 3:08pm
This is not an update on myself but is focused to those of you fighting this horrid disease that have been following my journey.
A quick recap: I went five years undiagnosed/misdiagnosed with all the usual that most of you have. It could be M.S., could be Lupus, definitely Fibromyalgia with something neurological going on and the list went on.
That went on for five years as I went to every specialist my PCP would send me to, including some psychiatrists.
In my case, it was a Naturaopathic Doctor that felt this looked like Lyme with Co-infections. I went there out of desperation. He ran the Igenex western blot and sure enough, I tested positive for Lyme.
By this point, my PCP thought it was a stroke since I could no longer walk or talk and my body tremored on the right side and was totally numb on the left.
I mention this to show where I was when I started treatment and why I need to say "NEVER GIVE UP". Long term aggressive treatment CAN knock this disease into long term remission.
After 5 1/2 years of treatment, 16 months of IV through a port (the controversial avenue), Bicillin shots and various injections along with what felt like a complete pharmacy of orals, I am living a normal life.
I treated for Lyme, Bartonella (cat scratch fever), Babesiosis (malaria like and y biggest culprit) and a few smaller co-infections that were easier to get rid of.
Along that way, I also tried many alternative approaches and I'm not endorsing any of them.
Only talking of what I tried.
I did acupuncture, IV Myers Cocktails (vitamin and mineral drips to build my system so I could fight), far infrared saunas and epsom salt baths for detoxing, a chiropractor and a couple of physical therapists.
I went from totally bedridden for 9 months, to wheel chair, to walker, to cane, to walking on my own with only needing assistance for stairs with no rails.
I lost all muscle in my legs mostly which is why the physical therapy, but I can say that I can now do it all without assistance.
I was unable to drive during this time because my EEG said I was having seizures and I was so confused and lost, it didn't really matter I could no longer drive since at my worst, I didn't even remember my family.
I can now say that I have my life back and I'm driving again and although I still may have a day here or there that I'm not 100 percent, it is so minor after all I've been through and just a non issue.
Tomorrow I leave for Copenhagen for a cruise to the Baltic.
I did travel during my illness since it has always been a passion of mine, but I did have certain restrictions and was taking some pretty powerful medication to do it.
All of this from a person that grew up in the 60's and 70's and still was ANTI DRUG. I had trouble even taking an aspirin, so this was a tough battle for me with each new prescription.
At this time, I'm on a maintenance dose of Babesia treatment in hopes of tapering that off slowly but life is good.
I write this because I needed you to know that treatment, although horrid, can work. I'm here to say it does. I myself would question if this was for life and yes, it can put you in a very dark place if you let it.
I have given birth to four children, one being natural childbirth and I can say that yes, this pain was worse than any of that. And to make it worse, it could last for weeks and months and basically drive you out of your mind.
So what advice can I offer now that I have taken this journey?
Obviously there are many books that people want to sell you and I imagine many have wonderful advice, but I will offer my short version free and willingly. People were there for me, so this is "Pay it Forward".
After my diagnosis, I had a very close friend of mine who suffers from a different disease and I will call her by her first initial "K" from IL. I was pretty overwhelmed when I was told I had a long, hard road ahead of me.
K told me that learning you have a serious illness will bring out emotions that are very similar to losing a loved one to death. She said the order and length is different for everyone, but most will go through them all at some point.
There was anger, then there is loss since the life you once had is no longer there, you will have denial that the doctors even got it right, and then acceptance.
Once you are able to accept, you have the strength to find out what has to be done and FIGHT, FIGHT, FIGHT!!!!!
The next piece of advice is to surround yourself with positive people.
Sadly, when you are diagnosed with Lyme, most of your friends won't understand it. Some days you don't even LOOK sick and they can't see the destruction inside your body.
These friends will start disappearing one by one and it gets worse since your light sensitivity has you in a dark room and your sound sensitivity wants no part of a phone or someone talking to you so you basically isolate yourself.
It isn't like Cancer where you will have people rushing to help you when they hear the "C" word. Those of you that have been diagnosed with both cancer AND Lyme first, are now cancer free but still fighting Lyme, say that you would take cancer any day over this disease no one understands.
This is NOT to make light of cancer in any way. I lost my Dad to that disease.
Basically the internet is your friend when you have Lyme.
There are state AND National support groups out there with other people that may be [u]using their computers with sunglasses or the lighting turned down so low no one else knows how you read it, but they are out there for you.[/u]
If you have friends in far away states that have email, hang on to those that can take your insanity since if they are still around after this, they are definite keepers.
I can't stress enough to surround yourself with positive people.
ALL of us go through the feeling that we can't do this anymore and wishing God would just take us, although that doesn't mean we are suicidal. We just are in pain and tired of fighting.
But through it, there are the type that will still find positive and can find a way to put all of this on a back burner now and then.
No one wants to listen to us complain all day and night. The constant downer really isn't good for your own health.
I thought I could save the world and started giving out my cell phone as I was getting better to Lyme patients, especially those on Facebook.
But once you start getting calls at all hours of the night saying they can't do this anymore and are going to commit suicide....all you can do is give them the suicide hotline number which I kept near, but it beats you down.
Sadly, you have to focus on your health. It's not that you can't help others, but pick your battles carefully.
Most of all, make sure you have a Lyme Specialist.
Yes, most doctors will tell you they can treat it, but they aren't going to test you for the co-infections which sadly, most ticks are carrying now and they aren't going to be REAL specialists in this field.
You want someone that is going to treat by the ILADS guidelines (International Lyme and Disease Society).
If they aren't....sadly, you really should move on to a different doctor if you want a fighting chance.
They won't be listed in your yellow pages but you can get referrals on many of the Lyme Support Groups, through ILADS, and usually someone that has the disease and has become active in the Lyme community.
I'm always willing to help with doctor referrals no matter what your state.
Those of you that don't have lyme, please be aware of the ticks.
They can be the size of a poppy seed in some cases and you won't see or feel them. I won't keep pounding you all with a stick but please be aware of the risk factors and symptoms.
In the middle of difficulty lies opportunity. ~Albert Einstein
fyi, every one of cathy's post had a great inspirational/hope quote at the end of her regular updates on the CARING BRIDGE site.
cathy gave me permission to post this; but this next one tugged at my heart and i'm posting it too from a DIFFERENT PERSPECTIVE of losing someone to suicide.
This entry brought tears to my eyes. My wife was one of those always threatening suicide that was constantly bothering you.
I knew she was up all hours with insomnia or else sleeping her life away but nothing in between.
She was in terrible pain as you mention and I think it is that the pain gets so out of control that you can't even think anymore.
She would talk about total nonsense during these times and be so angry.
I have tried to speak out on behalf of this disease and have handed out brochures about the dangers of infected ticks, but I think everyone thinks it can't happen to them.
Cities are not safe contrary to popular belief.
A mouse can get in your house and can carry a tick with it. There are so many scenarios that can happen and people would be scared for their lives if they really knew.
Thank you for following this through.
I don't know if she ever called it or not. You were fighting your own battle and trying to help her.
"My name is Jayna and I wanted to take this opportunity to say how much MDJunction has meant to me. I always felt so alone before I joined in April of 2012. I felt like there wasn't anyone that really cared about me and what I was going through. I felt like there was no one that would truly listen to me in what I was feeling. Nobody was there for me. That is before I found MDJ! 
