posted
How do most lyme patients react with steriods? Is there an improvment of symptoms? Worsening? Nothing?
If you read my other post- I am being told to investigate lyme- had been previously dx with lupus. With steriods I am nearly a healthy person....would this be true with lyme as well?
Posts: 21 | From iowa | Registered: Oct 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you are great on steroids, how is it being off them? That's the key.
Many who were previously misdiagnosed with lupus were later dx with lyme and other tick-borne infections as well. I'm one of those. It was lyme all along, not lupus. And, yes, when on steroids, I felt great. But then they just didn't work any longer and I spiraled.
Occasionally, a person can have both. But excellent attention to the infection is what can be life-saving in such a case. And, steroids can mask symptoms and make lyme blossom.
Others will be along to reply.
It would be good to schedule a consult with an excellent ILADS-educated LLMD. While many lyme patients never have a rash, if you ever had a bulls eye rash after a tick bite, that is vital for the doctor to know.
Using the search terms "steroids" - then "prednisone" - and then "lupus" you will find many past threads with great detail here:
posted
It also depends on the steroid dose you are taking.
I was put on prednisone for suspected Addison's disease about 3 months ago and it made me crazy and my Lyme started to spiral out of control.
The Addison's disease (autoimmune) got confirmed, but thank god I had an appointment with an LLMD at the time as well.
I am now on 15-20mg of hydrocortisone a day, and I feel a decent amount better. My endocronologist and LLMD talk to each other to figure out what symptoms are Lyme and what is Addison's. Due to their hard work I am now on abx and hydro and doing great.
Its definitely in your best interest to see a LLMD.
Posts: 594 | From NJ/NY | Registered: Jun 2006
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posted
Before I was diagnosed with Lyme, I was given three steroid packs in a two month span.
My Lyme symptoms grew fast and hard during that stretch. Before the prednisone, I was fairly healthy with the exception of a daily headache (from the Lyme).
My personal experience is a negative one.
Posts: 16 | From PA | Registered: Jan 2010
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posted
Before I was diagnosed with Lyme, I did a few weeks of oral prednisone.
I felt almost 100% better, and I had been feeling very sick for about 1.5 years at that time, with mostly neurological problems.
About a month later I crashed horribly and was worse than before, to the extent that I was no longer able to work full time and experiencing many more symptoms.
It took about a year of antibiotic treatment to get to my "pre-steroid" level of well-being.
I had no idea about the risk of steroids in undiagnosed cases, and regret that I took them quite a bit.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
When my LLMD diagnosed me with Lyme a few months ago, he told me not to take steroids ever again unless it was the only way to save my life, eyesight or hearing.
Steroids suppress your immune system and allow the Lyme to come out and play, even if it was previously under control.
The way I understand it from my reading, you might have symptoms due to inflammation caused by the Lyme or from your immune system fighting the Lyme. Then you could temporarily feel better on steroids when they reduce that activity, until the Lyme multipled and spread.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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