Raw Spewage

Updates from the battlefield ... fighting and winning against Lyme disease. Lyme bacteria rarely travels alone, by the way... so not only am I infected with Lyme bacteria but it brought along friends Babesia and Bartonella. It's one big keg party in here. But guess what? The party is OVER, boys. I am hammering you with IV meds and you are making me so ill as you fight back... yeah, you SUCK. But my meds are bigger and better and kicking your little bug asses to the curb. I win. =)

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Location: Palo Alto, California, United States

Writing has always been the best way for me to communicate my thoughts. And since my thoughts spew forth as raw, scattered, and random musings... the term "Raw Spewage" seemed quite appropriate.

Friday, November 07, 2008

Lyme Hope: First Step Toward Healing

Long story short
Brain MRI did not show a tumor or cancer. It did, however, show that the Lyme and co-infections have caused more spots on my brain.. which explain why my vision has been gray and dim in spots.

My doctor said, "It's time. We have to treat this NOW. IV antibiotics are the way to go."

I cried that day. I cried out of terror and fear of the path ahead of me. I have reacted to everything they have given me and am terrified that I will react again. I told my doctor this... and asked him if he treated other patients like me -- as bad as me?

He looked at me with compassion and said "Wendy, this is what I do. I know you are scared but we will get you through this."

My doctor is the best Lyme doctor on the West coast. People come from all over to see him -- we've met people from Washington, Utah, Arizona. He had moved his office not too long before my first appointment with him. I started to see him in June 2008. Imagine my surprise to find that he is now located 3 BLOCKS FROM MY HOUSE.

Seriously. 3 blocks.

If that doesn't say "You are supposed to do this with this doctor," I don't know what does. Isn't that the most powerful message? I don't have to drive or take a plane to see him -- I could walk. I think this fact alone has given me incredible amounts of comfort. Well, that and the fact that one of his patients had just gotten his color vision back the last day I was in to see my doctor.
Yeah, that patient had only been able to see in grayscale and my doctor *healed him* so he could see in color again. Powerful.

Plus, I cannot live like this. The pain I deal with has pushed me to my limits as a human and considering that I have dealt with kidney stones and childbirth, that is saying something. The migraines alone are a 15 on the pain scale of 1-10. This needs to stop. I want my life back and I want to stop suffering.

We have a plan. Today is the first step of hope toward healing.

* I will be going into my doctor's office for him to test IV medications and see what ones will work. I have already had my other doctor do muscle tests to see what ones might work for me... it was a very short list.
* Once I know what medication is okay, then I go in for out-patient surgery to have an IV line inserted. This line is where I will run my antibiotics every day since I will be doing this at home. (Terrifying but there it is.)
* A nursing company is coordinating the IV treatment end of things. They will be helping me with the medications and providing a nurse to help me as I do the antibiotics. The nurse is amazing, I am told. The best. And located in my city as well -- yet another message that this is The Right Thing.

No, I don't mean Obama (although that was amazing and awe-inspiring in and of itself). I mean, Lyme politics. There are actually those that say Lyme does not exist. And currently my insurance will only cover 4 weeks of antibiotic treatments, which may not be enough. So I will have to pay for it myself.

And to add insult to injury, I actually paid premiums for Long Term Disability and they have denied my claim, saying I am not sick.
Their "outside expert" clained that there was no reason why I should not be able to do a 40-hr week. The only way I will get my claim accepted by them is if they allow it for Psychiatric reasons. Which, conveniently, only forces them to pay me for 2 years tops. And then they don't have to pay after that. If my claim was accepted on medical reasons then they would have to pay me for as long as necessary.

I don't have the energy to fight them -- I need all of my energy for myself and for healing. Hopfully they will do the right thing. But if not, then it is what it is.

One day at a time. That is all I can do -- just take it one day at a time. My team of doctors is the best on the West Coast. I have surrounded myself with excellence. That is all I can do.

I don't know if I should do regular posts or not. I also thought about doing youtuve videos so people could see me as I heal -- because I WILL get better. There needs to be hope out there... Lyme diagnoses are up 1300% -- yeah you read that right thirteen HUNDRED percent -- so I won't be the last to be taking this leap of faith with IV medications. If anyone is reading this and has thoughts, feel free to post them.

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