posted
I talked to a nice woman recently who told me about needing a lot of steroid treatment for an autoimmune problem. Said she tested negative several times for lyme, therefore did not have it, and the steroids helped.
She looked OK, said her muscle wasting problem was helped by exercising.
She is from CT.
I don't know what the time frame was for the symptoms or the treatment or how long she has been on/off the steroids. Had the impression she was not on steroids any longer.
So, did she really have lyme? Is a crash coming?
I did not say anything to her story except that the lyme testing was not reliable. Have found in the past that people who are not looking for new information do not want it.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Sometimes people get lucky and don't crash from steroids. I know I took them before my Lyme diagnosis and it didnt' make me any worse or make me crash.
Now that she's been on heavy doses, her tests will be extremely unlikely to come back positive. All you can do is plant the seed.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Very interesting. You took steroids for lyme symptoms, did not crash, but still needed lyme treatment afterwards? So the steroids did not help or hurt?
Trying to decide if I should ask for more info re her current situation, or if that would be too intrusive, next time I see her.
Maybe it is too soon to know what the outcome of steroid treatment will be for her.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
The steroids seemed to help me in the short term. I think the worst thing is to get a steroid shot. Then you're looking at trouble.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
In my case, I went five years undiagnosed and in that time frame of having every test run under the sun, I too was given steroids.
The first time was given the dose pack stuff and kept ending back up in the ER but as soon as I would get out, I'd keep taking them since they just hadn't kicked in yet.
As I got worse and worse, I started doing steroid trigger point injections for my fibromyalgia. At that time, honestly, they seemed to really help with the pain levels. In many ways, they are what helped me COPE since I just was never one that could tolerate pain meds.
Then a couple years later when the pain was getting back up there, I had a doctor tell me I had degenerative disc disease and had two choices.
Either surgery for C5 and C6 or else epidural steroid injections. Hearing the risk of the surgery, I went for the steroid injections.
That's when all heck broke loose. I was admitted with them thinking it looked like a stroke. Eventually, when they said it wasn't a stroke and it must be in my head since nothing was wrong... it was a N.D. that did an Igenex and the rest is history.
With this said, I know without a doubt that the epidural steroids are what put me over the edge, but on the same token, I did go for years with lower doses and it was mixed as to if it was a bad scene.
Knowing what I know now, I wouldn't touch them, but at the time, I was clueless and after all, I had three negative Elisa tests so I definitely didn't have lyme anyway.
I hope the woman will be alright Lou. Keep us posted.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
After I did a small round of steriods ( oral) my world crashed around me and I was way worse.
It took years to get better.
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
It depends on what is meant by steroids. Lyme is known to affect the HPTA axis. So supplementing in physiologic doses of hormones (such as cortef for adrenal fatigue) may have some place in treatment as a means of giving people some of their vitality back. Of course, this may be more suitable in conjunction with abx as hormones such as cortisol and testosterone can be immunosuppressive (but the key is probably physiologic dosing)....
Perhaps cortisol for inflammation would not be a good idea if body levels were normal already. I've always found this part of treatment interesting...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
She was talking about heavy duty steroids, like methotrexate. Think she might have mentioned IV. Don't really understand why pills wouldn't cause a crash but shots would.
Posts: 8430 | From Not available | Registered: Oct 2000
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