Party is Over, Boys... Big Guns Are Here

Tears slide down my cheeks as I write this. I can't stop them anymore than I can stop the pain attacking my body right now. I am in a war, a war to take my life back from the bacteria who stole it without my permission. Lyme bacteria. Babesia (just like Malaria and just as miserable). Bartonella (this one sucks too but can't remember what it is similar to). Two viruses. This battle isn't about who is right and who is wrong, it is about trying your best to listen and surrender when you are asked to... even if you do not understand why. I am not sure that a person can talk about pain when they are trapped in the prison of it... but I will try because this fight is about so much more than my sadness and frustration ... it is about the journey that takes you out and leads you home.


Now I am just going to write.


The last time I posted anything was about a year ago. After my last post in 2010, things went downhill on a slippery slope and I begged for help. Pleaded for someone to take my hand and help me out of this... my doctor out here has carried me every week as we tried to keep my system on even keel and keep it from crashing. But my system just could not take any meds to kill this crap off -- body was just too weak and after dropping to 92 pounds the last time we tried, we were stuck. Afraid to move forward yet watching me slide backward...


Around this time, my angel of a friend had gone back East to get herself hit hard with meds and pull herself out of the Lyme mess she was also trapped in. I watched and listened as she was pulled out of it and slowly got her life back... being healed. Gaining ground against this disease.


I'd never heard that happen before. I mean, people take the antibiotics for months and even years but that just helped them into remission... she was being *healed*. Getting herself FREE of this disease. She had been yanked out of it by two experts using IV meds. Thousands of people on East coast had already been through this treatment... and it was starting to be used in clinics and hospitals out there too. These guys were amazing... I started calling them The Dude and The Other Dude. I also called them angels because that is what they are... true angels doing miracles for sick people.


I wanted that. I wanted to be pulled out too.


But I was too sick to travel back East and I have a kid to take care of... oh but how I needed help. I could barely walk, the pain was unbearable, and my vision was getting worse and worse. And that was just the tip of the iceburg. So we came up with a plan... a plan to bring THEM to ME. We flew them out so they could meet me and my doctors and show people out here what has to happen in order to bring people out of Lyme and all of its ugly co-infections and viruses. How to target JUST the bugs and kill all of it off but heal the body while you are doing it. There were a bunch of doctors signed up and the trip was planned and the tickets bought. It was going to happen!


But then one doctor got scared. And the whole thing went to crap... or could have gone to crap if I actually allowed myself to be scared by one person's words... words that said I would get worse if I tried this medication. Words that said I would end up in the hospital if I used this medication. Words that said don't do this or you could die.


Here's the thing ... this doctor was basically trying to scare me into doing nothing. Like doing nothing would be better than trying this treatment that has helped so many other people... like doing nothing would keep me from sliding further and further into the horrible pit I was already trapped in... like doing nothing would in some way be the right thing.

But if there is one thing I have learned in life, it is about resistance. If you are encountering huge amounts of resistance? Then you must be doing the right thing... because the forces in life really do not like change. They like things to stay the way they are. Change is unsettling. Change makes things different. Change forces us to do stuff. It is so much easier to keep things as they are. I figured I must be doing the right thing with all the resistance I was getting -- in fact, this must actually be very important not only for myself but for the other really sick people out here who will benefit. That said, I was still scared... I mean, I'm just a normal person. I'm not a doctor or an expert or anything but a really sick person who needs help.

But I did it anyway.

It was one of the most courageous things I have ever done... bar none. Despite the terrifying things the doctor out here was saying, my gut told me that he was wrong. Flat out wrong.


So I stuck out my arm and said "IV me. Put these meds into my blood and show me the way home."


That was at end of January 2011, 8 months ago, when I started this treatment. I have never looked back. I have been slugging it out with these bastard bugs to get them the hell out of me and win this war.


Make no mistake -- this IS war. These bugs have been living in MY body, eating MY food, paying NO rent, and destroying the rental house with keg parties. They don't clean up after themselves, there is trash everywhere, crap is broken, and no one is fixing anything. Any time I have tried to throw them out, they get pissed off and fight back, making me even more miserable than when I just left them alone to destroy my insides. They have been enjoying a free ride for way too long and I've had it. I think it takes getting to this point -- the point where you are stripped down to the bare metal. There's no coating, no paint, nothing hiding or protecting you when you get so ill that your body can't help itself. It's so sad to see it try and try valiantly... it needs help. It needs a guiding hand carrying a light that can lead The Good Guys into the house. Help is coming... we know the way out and are strong. We can get these things out of you. We can help you get your house and your life back.

Are you ready? Are you ready to let us lead you onto the right path?

It's not an easy path. No. Not by any stretch of the mind. It's hard and it forces you to open your heart and mind to other ways of thinking... of learning... of thanking.
Yes, thanking.
Because along this winding path, wonderful souls pop unexpectedly into your life in the most surprising ways. You have to be willing to surrender... accept their help and say thank you. Look at the two wonderful souls with their healing elixir of life... who flew out here to the West Coast to start me on my journey. They are guiding me along the path home. I am no longer alone on this journey and the meds are my way out. It's a beautiful thing in all its ugliness... because make no mistake, these past 8 months have been u g l y.


And that's where this part of my story begins... what it is like to slog your way through the shit. Slog with me as I tell my story.

Burning Cold Bites

Yeah, this BITES. Seriously bites. I started a new medication -- potent antiviral cream. I use one small dot of it -- the size of a small pea -- on the inside of my arm.
That's it.
Do you know how my body is reacting to that small amount?

• I am having serious problems walking because my legs feel like blocks of wood inside, from the knees down. It is hard to get them moving. Stairs are dangerous right now.
• The skin on outside feels the way that it does when you stick your hand into a snowbank -- the horrible burning COLD? Yeah. That is how it feels right now on both of my legs, from the knees down. I cry it hurts so bad.
• It is really difficult to get warm -- and I ache so badly with some serious pain from all this. And I *know* pain so I am not being some lame ass with a sob story -- I've passed 2 kidney stones for God's sake so... yeah. I know pain.
• Exhaustion is beyond words. I sleep and when I wake up, I am STILL exhausted which is a truly awful feeling.

Here's the positive spin (believe it or not, there IS positive):

• If my system is reacting this strongly, then we are hitting the right spots with this medication
• My doctor gave me some exercises to stimulate the left side of my brain -- doing figure 8s with my right hand... writing the alphabet with my right foot. It HELPS.
• My vision is holding steady -- previously I have had it go dark. Lose half of it in one eye. Go dim and blurry. Have blue spots show up. Bursts of light rays -- like what happens when a light is on behind a partially open door in a dark hallway.
• Mentally, I have hope. I feel ... strong. Steady. Hopeful. Despite the pain and feeling horrible, I am doing something. And it SO helps to have my doctors tell me "Yes, we have heard that from other patients... don't freak out because we do understand and this is not worrying us. It sucks but it is not worrying us. Hang in there."

Bottom line: This is not going to beat me. Make no mistake -- I have never been more ill in my life. I am not sticking my head in the sand -- I KNOW I am really ill. But then I remind myself.... I have dealt with kidney stones. I have had 12 surgeries for Endometriosis. I had a BABY.
I know pain and this ranks up there.
But I REFUSE to give in.

What makes this mess the worst and most challenging to deal? Well everything else had a FINITE END POINT.
Pee out the stone? Poof! Pain is gone.
Push out the baby? Poof! Pain is MUCH better.
Surgery to clean out endo? Pain is much better even though is still hurts to heal.

This mess does not have a finite point where I can say "Oh I just have to get there... once I get there it will be better." Everything related to fixing me actually makes me worse on the way. And THAT, my friend, SUCKS.

So here is how we are going to do this: one day at a time. It is what it is... I cannot change the fact that I have Lyme disease, plus Babesia and Bartonella, plus a huge amount of some virus in my system. What I CAN change is how I deal with it... What I CAN do is take it one day at a time and find ways to help myself through the day... through the hours, if necessary.

And one big thing that is helping me right now is HUMOR. That and writing... I got my first check for an article that I wrote. Very cool. So I will give updates here about how badly things are sucking as I go through this. I doubt anyone will read them -- certainly no one with Lyme should. What's the point? The last thing I want to do is read about other people going through horrible shit -- I have enough of my own to deal with, you know?
But... if it provides someone the least bit of comfort that they are NOT ALONE.... well, then walk with me as I do this. You don't have to say a word or post anything... you can just be there.
And that is enough.

Wow! You look GREAT! How'd you lose all that weight?

Having people say that to me is one of the most surreal conversations ...
I am so ill right now yet... I don't look sick ... I mean, I don't have a limb hanging off. But the weight loss is pretty scary.
At least to me, anyway.

My doctors tell me that this is how some viruses behave.... some people lose weight, like me. Other people gain weight or fluid. I can tell you from present experience that losing this much weight is NOT pleasant or comfortable. I feel like one of those shivery Chihuahuas... you know the ones? They wear little sweaters all the time and have huge fluffy beds to lay on?
Yeah, that's me right now. I make jokes about my "Chihuahua blanket" that I have to use at night to sleep on... it just hurts too much to lay on the mattress without it. And I am cold all of the time since I have lost all the fat.
It sucks. Don't go thinking -- oooh that is great! No fat! Noooo. Your body needs balance and without it -- well, things are very uncomfortable.

For awhile, I was worried I had cancer or a tumor or something really horrible.
I don't have cancer or a tumor, but I DO have something really horrible and it is called Lyme disease. I have Lyme and at least two other co-infections: Babesia and Bartonella. Babesia is awful -- they tell me that the symptoms are like Malaria and that they use Malaria medication to fight it. All I know is the awful cold spots I get that feel like I have a ball of burning ice inside parts of my body -- it is so cold that it burns. Sometimes I get spots over my vision or I can't get my eye to stay on one spot... the bone and joint pain gets really bad ... and the migraine pain is a 12 on a scale of 1-10. There's more stuff but I can't think about it right now -- too close to home and I need to get away from thinking about it.

So. Yeah, this is the sickest I have ever been. And up until about a month agao, I felt so alone... so scared... like I had dropped down a deep well and getting out looked impossible.
Until Dr. H and Dr. F.

Dr. H is a Lyme expert and worked at iGenex (THE lab for Lyme testing). He KNOWS Lyme and all of the co-infections, he knows how to read the blood tests, he knows the symptoms inside and out.
And he sent me to Dr. F. He called Dr. F the "architect"... which made no sense to me at the time but now?
I get it.
And Dr. F is my ticket out of this mess. More about him in my next post.