Prognosis?

I am asked every day about my prognosis. Here’s the deal, chronic Lyme disease doesn’t have a prognosis.  We literally take on this illness one day at a time.  When I discuss my progress with my doctor, I am constantly reminded that I have been sick a long time (9 years) and that it’s going to take a long time to get well.

Get well. I love that thought, but it’s not necessarily realistic.  Don’t get me wrong – I want to get well, but there is no guarantee that I will.  In fact, given that the bacteria has invaded so much of my body, it’s likely that I will have the bugs for life.

One Lyme doctor puts it this way – a lot of people live with diseases and illness that have to be managed: diabetes, heart conditions, RA, Parkinson’s; all conditions that require lifelong management. For chronic Lyme sufferers, it can be the same way.  I may not ever completely eradicate the disease(s), but I hope to keep improving and someday be able to function better than I have been the last couple of years.  That may mean that I have to take medications and supplements or continue dietary restrictions, but it doesn’t mean life is over.

In fact, even though life has been largely done in bed, I’m still living, and I’m still happy. Lyme sucks.  But what God has done with my life thru Lyme has been amazing.  I would do anything to get rid of this horrible disease – but I wouldn’t change the blessings I have been given because of it.

God is still God.
God is still good.
To HIM be the glory.

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2 thoughts on “Prognosis?

  1. Thank you for this post! Your words and strength are beyond encouraging. Do you mind me asking you how you were first diagnosed? I am currently not well and usually I am super healthy. I’ll try to give a short version of the story. I’m a teacher and November 11 as I taught there were bugs. One was on my arm yet I didn’t know what they were until later. Turns out they were German roaches ( may just be a coincidence) I moved all of my classes for the rest of the day and later that afternoon I started to get a horrible pain on left side of my body , joint pains and chills down my back like I had he flu. since I had just found out that I was pregnant, I went to the doctor who sent me to the ER. Turns out I would have a chemical pregnancy two days later. I was sent back to the ER three days later bc the joint pain and chills just got worse. After a ton of blood work and X-rays on my back, the only thing that came back irregular was my crp protein level was elevated so it will be rechecked in a week. Since then, my jaw and throat are so tighter and hurt. An ent told me it is tmj from anxiety and stress. But I feel like it’s more. I have random joint pain and chills still although not all the time. My vision gets blurry and I feel disorientated. Last night I woke up in the middle of the night feeling like my throat was closing. I get itchy everywhere but no rash. I’m always tired. I was tested two weeks ago twice for lyme as every doctor first says that. They were negative. I reached out to my doctor bc my throat burns sometimes. I am thinking I need to see a rheumatologist, maybe throat X-ray or cat scan ? Maybe retest for lyme ? I know you aren’t a doctor but I guess I wanted to know how you found out – thanks again ! Sorry for the long post and I wish you the best of luck and health.

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    • Oh my goodness! I am so so sorry for all you are going through!

      It is so frustrating to be so sick and have to battle doctors. They make you feel crazy! The reality is that their egos won’t let them tell you that they don’t have answers. They try to fit you into one of their boxes of known illnesses and when you don’t meet the criteria for any of the illnesses they understand, they turn against you. It’s so wrong. And I’m so sorry.

      After 7.5 years of being sick, I went to a Lyme Literate Medical Doctor (LLMD). These doctors are certified by an organization called ILADS (check them out at ILADS.com). They test through a lab that has done extensive research on Lyme. But even with their extra testing, absolutely no Lyme test is accurate. So Lyme disease is a clinical diagnosis – doctors diagnose based on symptoms – testing can support the diagnosis, but a negative test cannot rule it out.

      Unfortunately, LLMDs are expensive and do not take insurance. My ins reimburses a portion on my bills, but not all. Most insurance does not cover Lyme at all. It is a heartbreaking challenge!

      There is a federal bill that has been putting together a team to try to fix the Lyme problem but it is not happening fast enough. It is scary that people like you get sick and can’t find help.

      I encourage you to check out ilads.com and lymediease.org. Read through my blog – I try to put a lot of helpful info. And please feel encouraged to message me any time!!

      Liked by 1 person

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