posted
Has anyone out there ever used a short time amount of Prednisone with the Lyme treatment?
Any luck. Worse after, better after?
Thanks
Gailsy
Posts: 31 | From Bloomfield, New Jersey | Registered: Nov 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Definitely not a good option to further suppress your immune system with steroids. I personally believe that taking steroids allows the infections to worsen and reduces the chances of getting on top of them.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Steroids make infections worse. Many on this board have gotten much worse after a round of steroids.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Gailsy,
No, no, and NO!!!!!!!!!!!!!!!!!!!!!!!
I'll give a quick background of my experience with this. Obviously everyone responds differently, but this will elaborate on the negativity the above posters have given you.
When I first started with my "mystery illness", meaning they hadn't diagnosed me with anything yet, they gave me a steroid dose pack in the hospital and told me it would kick in in a couple of days and I'd be fine.
Ummmm...it kicked in in a couple of days but sadly, this was back when I still believed dr's had the answers so I went to a wedding out of state. After all, I'd be fine by the time of the wedding.
I ended up in the E.R. with such horrid chest pain and seriously thought I was dying. They drugged me up and since I had just had a heart catherization just before in the last hospital, they said to keep doing what I was and see my dr when I returned home.
Sooooo....I continue on my dose pack, having NO CLUE this was my problem and got sicker and sicker to the point that I was in a wheel chair to get back on the plane to go home.
Move ahead five more years. Still having symptoms for something but I was just sent to specialist after specialist until finally I'm told I had degenerative Disc Disease in my neck which was causing what? My now "Fibromyalgia"?
My option was to either have surgery as they give you the risks, or epidural steroid injections. I figured the steroids sounded like the safer option and I hurt so much, I couldn't have thought straight anyway.
So, do the steroids and guess what? This time, I'm left unable to walk, have a tremor going on in the right side of my body that the E.R. feels looks like Parkinsons, and I'm slurring speach, losing eye sight and ofcourse they think "stroke".
But my M.R.I. is fine, so there is no reason I should be having any of these symptoms. To finish the story, my M.D. has NO CLUE what is going on and why but my naturopathic doctor takes blood, sends it to IGENEX and refers me to an LLMD saying he will be sending the results to him.
I get to the LLMD, he says I tested positive and he knew I would after seeing my medical records and how I reacted to the various steroids. My LLMD would tell you to steer clear of them and my personal experience would agree 100 percent.
I don't know if this would happen to everyone with lyme, but it surely isn't going to help it, so I would definitely question whatever doctor that is even suggesting this path.
Just my 2 cents and good luck.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
It may help symptoms in short time range because it is the inflammation what makes people sick and prednisone stops it, but in a long term it only makes things worse.
Posts: 636 | From Wroclaw, Poland | Registered: Mar 2004
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Several of my clients that have long term resistance to abx therapy have told me that their LLMD, two separate ones, have recommended that they take a short low dose term of steroids.
They theorize that they will "Flash" the immune system since it is non responsive. I don't know what the long term effects are. But I have heard of it. I do know that steriods are like fertilizer for BB.
Don't shoot the messager...
Blessings,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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posted
when we didn't know what was wrong with my daughter, and the rheumatologist was convinced it was athritis, he put her on prednisone. AFter one week, she was so dramatically worse it would take your breath away. When I dutifully reported this to the doctor, I also said my neighbor had recommended that I ask about Lyme disease. The doctor promptly fired us as patients on the spot, and had the nurse hustle us out the door. (This was before I knew anything about the Lyme Wars.) At the time, it was the most bizarre medical experience I'd ever had. That was two years ago, and I had A LOT more bizarre (lyme-related) experiences since then.
Posts: 991 | From California | Registered: Feb 2006
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posted
Thank you all. I did take one day of the meds but have now stopped because of all of you and your advice.
It's amazing how we have to take our treatment plans into our own hands. So nerve-wracking not to be able to even trust a doctor you see.
Thanks !
Gailsy
Posts: 31 | From Bloomfield, New Jersey | Registered: Nov 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Gailsy,
I'm glad you limited your prednisone dose. My story only illustrates what others have already said.
Prior to my Lyme diagnosis, I was dealing with tremendous swelling in my right knee, as well as some numbness in that leg.
A renowned sports doctor drained my knee twice and shot it full of cortisone both times. First, it didn't provide me with any relief, but it also may have ultimately hampered my healing.
After 15 months of treatment, I am significantly better, but that knee is still swollen, and it still can flare with pain. Because of the steroids, my LLMD fears that knee may never be "normal."
The one time I had to be admitted to the ER since starting abx, I walked in sayhing only one thing like a mantra: I have late-stage Lyme disease; NO steroids!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Gailsy,
Is this doctor you are seeing a LLMD? I remember the day I believed everything the dr's said and going undiagnosed with lyme for so many years was a true eye opener.
You are right. It's sad we have to take our own treatment protocol into our own hands in so many cases.
Jhlral,
All I can say is that your story just makes my blood boil more. I have a similar story with the M.D. as soon as lyme was mentioned.
I'm an adult and it was bad enough but if this had been one of my children and a doctor did this, I would have been through the roof.
Guess it goes back to, "mess with me, but don't mess with my kids". My heart definitely goes out to you and sadly, this kind of crap is going on all over the country. Unreal!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
I have already seen two LLMDs and even there I have different opinions with one saying use the prednisone and the other saying don't do it.
I am seeing another LLMD much closer to my home on Tuesday and I'm keeping my fingers crossed that she will be the answer.
I am not a doctor and it scares me that I have to make some 'doctor' decisions for the right thing to do. But I listen to everyone here and it has helped me keep my head on straight from the beginning when I just wanted to die to today when I am thinking I might actually one day get better.
You all are more than appreciated.
Gailsy
Posts: 31 | From Bloomfield, New Jersey | Registered: Nov 2006
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posted
Gailsy-PLEASE take it from me and try to avoid it. I am now on 60 mg Pred a day because I have no platelets and just when I thought I was finally getting some relief from LD on Nov 21, (after almost 2 years) I am now slipping back quickly.
Besides not sleeping again barely at all, everything seems to be coming back..twitching, neck stiff, dizziness, depresssion, cognitive/memory loss,etc. And my platelets are going down again even though I'm on the Pred because I think it is "aggravating" the lyme..It's a vicious cycle I'm in.
I don't know how long you said you need to be on it, but it is not worth it unless absolutely necessary in my opinion.
It is an EVIL EVIl drug!! Natalie
Posts: 87 | From Clarksburg, NJ, Monmouth | Registered: Aug 2005
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posted
It's interesting to see the varied reactions.
Before knowing I had an infection, I tried a prednisolone taper. Wow! I felt incredibly better, as in my symptoms were 99% reduced. I didn't think I could ever feel so well again.
After the taper ran out in a few days, my symptoms returned, but fortunately were no worse than before. Maybe I was just lucky. Now that I understand the benefit came from turning down my immune system, I don't want to risk that again.
Posts: 727 | From USA | Registered: Mar 2006
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