Friday, April 5, 2013

Advice

A bit of a warning:
Many doctor's claim to know about Lyme and willing to treat it. Here are some warning signs that you won't heal with them.

  • Refuse to treat co infections at the same time for whatever reason
  • Sell you supplements out of their office promising that you can't get them online for cheaper
  • Pull your partner/caretaker aside, and say that this is too bad/ you're too sick to have lyme.
  • If they are a specialist in any other area. Remember that episode of House where he tells Wilson something like, "You're an oncologist; of course you see cancer." An allergist will test for allergies. A Rhumie will test for arthritis. A neurologist will see MS, ALS, Parkinson's etc. 
    • Disclaimer: Some are willing to learn and help through treatment, but without being a specialist with this so intricate and unique disease, it will be impossible for them to learn fast enough to be the primary doctor in your fight against Lyme and friends. Think about if you are the Commander in Chief and you have a bunch of Generals who had only played risk. Would you win that war?  
  • You get worse and not just Herx-y worse.
    • This can also happen with an LLMD. If this is the case you need to be checked for a genetic mutation that makes detoxing damn near impossible. 
  • They back-peddle and say maybe it's not Lyme, but likely depression/anxiety and Fibro or and of the ones listed above. 
The truth is that in this fight, we have to be so incredibly proactive for ourselves. I know when lifting your head seems like you are running a marathon that the previous sentence seems impossible. But we are in the fight for our lives; why would we hand the reigns over to someone else. Find allies. Definitely. And when you are billed unjustly, fight it! 

Keep all paperwork! Every little piece of everything every doctor, every nurse, every pharmacy, every Social Security department gives you. Believe me; I know it's a bunch to handle. I have piles all around my apartment. But when you win that dispute or case and it saves you even 50 bucks, that 50 bucks might buy you a few prescriptions that you would have otherwise had to beg for someone else to pay. 

I know the anxiety will tell you just to pay the bill and let it go. But we can't afford to be taken advantage of in any way. 

In fact, I will be filing a report today because of basic bullying by a SSA worker who doesn't think that I am sick, I assume, unless she speaks to all humans with disgust. She speaks to me with zero respect and complete disbelief. I think this is because the first time she called I was having severe neuro symptoms. I told her so. I told her I couldn't retain what she was saying and could she please email me. She scoffed and I explained that my brain wouldn't let me have a proper, reliable conversation. She laughed. 
Since then she snaps at me or just won't return my calls. My life- accessibly to medical care and food is in her hands. Or maybe, dealing with the doctors' bills will be enough for my body today. I might deal with her tomorrow. I still have to set up my pill dose bags for the next 7 days. 

On a completely separate note, I am so very grateful that spring might actually be coming. Yay!

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