No, I dont plan to take it. Just curious how different doses affect lyme sufferers differently.
Posts: 214 | From Home | Registered: Apr 2011
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Keebler
Honored Contributor (25K+ posts)
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posted
- Google: steroid+disaster, borrelia
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My life became one.
If you don't plan to take them, your time might be better spent on other aspects of lyme education and wellness - after you read the articles that come up with the search.
Unless a very serious emergency and WITH lyme treatment & monitored by a LLMD ahead of time, during and after - just say "NO" and move on to study what will work for you.
There is no playing around with dose here (other than very low dose Cortef). Don't waste time playing with the devil.
One shot in a joint can ruin a life for someone with lyme. And it downward spiral stick around for 6 months. After a series of joint shots, my life was nearly over - but no one had even mentioned lyme all that time.
One PUFF of a forced steroid inhaler caused major damage for me - for months. It was sheer horror from a tailspin that would not stop. -
[ 06-08-2012, 03:57 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
My husband has been on IV steroids for a week twice, both times to treat pericarditis (which was probably caused by Lyme).
This was a life-threatening situation, and steroids was the only way to reduce the inflammation of his pericardium as fast as they needed to.
I was very nervous about this treatment and possible long term effects, but he was also on high doses of IV abx simultaneously, which I think helped. For anything not life-threatening, I would avoid steroids of any dose.
Posts: 962 | From Charleston | Registered: Jan 2002
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posted
I was dx w/ lupus and was on daily prednisone for over a year. Then I did the Advanced Labs test and turned up cultured positive for Bb.
When I was taking prednisone, unknowing I have Lyme, every time I tried to cut back the dose my scalp broke out in the weirdest rash. I also would have a horrible flare of symptoms.
Even worse, it wasn't until I was on prednisone that my Bart rash showed up, that was about 4 years after the bite.
I might not have this hideous Bart rash on my arms if I hadn't taken prednisone. I think it allowed the infections to really take over my body.
Posts: 331 | From West Coast | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
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posted
- Maryland Mom's husband's case is important: ONLY if life-threatening (or vision threatening) and ONLY with LLMD on board with antibiotic regimen.
--------------
Similar case to debilyn,
Daily prednisone for misdiagnosied lupus (when it had been undiagnosed lyme all along) allowed the infection to really get to my brain and nervous system.
I cannot describe the horror (and other wrong psych diagnoses) that caused for years. Beyond my worst nightmare - for years.
At first, I welcomed the prednisone as it provided a boost to energy and I THOUGHT I could keep my job. But I soon lost the job anyway when I just crashed so hard - and nearly lost my life - due to the steroids.
Seizures started and caused lots of damage that has never healed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- sickmate,
Since you say you don't plan to take steroids yourself, I can only guess you are asking for someone else - or to connect the dots from a past experience of yours.
Be sure search the LymeNet Archives, in the "subject" line for the many past experiences of others:
Topic: what do STEROIDS actually do to us? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I had to take IV steroids before and after my IVIG infusions for the first several months. This was two days every other week. Eventually they cut it down to just before, and then were able to cut it out completely. I suffered no noticeable ill effects at all from the steroids. I had to take them because I was getting anaphylactic reactions from the IVIG. I got IV hydrocortisone.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I took what is referred to as a 'prednisone taper' for a week following sudden hearing loss before I knew I had lyme. The prednisone was supposed to help reverse the hearing loss, but it did not do this in my case.
Instead, the hearing loss worsened and I developed buzzing/vibrating sensations in my extremities and head - and eventually lost half of my vestibular functioning.
But during the time I was on the prednisone, I felt much better. It seemed to give me energy and my mood improved. If only I knew then... the damage it could cause. Hopefully we can reverse some of it.
Posts: 2386 | From New England | Registered: Aug 2011
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quote:Originally posted by Keebler: [QB] I can only guess you are asking to connect the dots from a past experience of yours.
I took up to 75 mg for a week - what were your doses?
Posts: 214 | From Home | Registered: Apr 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Just like lyme treatment, I think it's different for everyone (symptoms). It's contra indicated for lyme. It makes lyme patients deteriorate (develop more/worse problems).
I had some in my IV in the ER one night, followed by 5 days of prednesone pills. I felt so much better on the third day, then fourth day. But on the fifth day I got really sick, couldn't breathe, started shaking and sweating, & my eyes dilated within 5 or 10 minutes after taking it(didn't know I had lyme).
I went back to the ER and they told me to stop taking the prednesone (thought I was allergic to it).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
13-14 months 20mg? i already thought my one week was much! damn ducks.
Posts: 214 | From Home | Registered: Apr 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- sickmake,
Could you please answer the question posed twice by AlanaSuzanne?
WHY are you asking? (since your first post said you had no plans to take steroids)
From just your last post, though, are we to assume you DID take one week's prescription of some kind of steroid?
If so, just finishing - or a long time ago?
That detail matters regarding the quality of replies you receive. If you have certain reactions right now, there may be some specific things other posters can suggest. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by Keebler: [QB] - sickmake,
Could you please answer the question posed twice by AlanaSuzanne?
WHY are you asking? (since your first post said you had no plans to take steroids)
strange. i think i did already it answer by confirming your guess.
quote:Originally posted by Keebler:
From just your last post, though, are we to assume you DID take one week's prescription of some kind of steroid?
If so, just finishing - or a long time ago?
as i already wrote: long time ago (connecting dots of the past as you put it).
Posts: 214 | From Home | Registered: Apr 2011
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Keebler
Honored Contributor (25K+ posts)
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posted
- That post had elluded my eyes earlier but, now see that you copied my question and since you wrote only:
"I took up to 75 mg for a week - what were your doses? " (end quote)
it was hard to know if recent or long ago.
While my experiences were years ago, with prednisone, I'm sure much lower doses.
With the packs (7 or 10 days?) that had graduated amounts of who know whichs steroid, unsure of those doses.
I had been very ill for months and many different antibiotics just never helped with sinus and ear infections.
Well, the abx had not been consistent but after doing better on one, when stopped, got much worse. Over and over. Rather than look deeper, my doctor went to steroids.
I will say that I felt so much better when taking those - that I managed to fly 2,000 miles, go through a long interview process and land a dream job.
When I returned home, got very ill again and asked me doctor for a refill of the steroid pack as I was just too ill to even think of moving and starting a new job - I was told them that I could have no more steroids and I would "surely feel better soon."
Lyme & co. went undiagnosed for many years. Lost that dream job 8 months after moving. It was a disaster.
Especially with undiagnosed lyme or other TBD, steroid reactions can be so grueling. My later experiences were much worse. Even shots to my joints caused full blown full body disaster.
Glad to know that right now, then, you are long past that - other than trying to understand what happened.
Still, hope whatever the reason prescribed - that that you have since found a good LLMD to set your sails on course. -
[ 06-09-2012, 06:24 PM: Message edited by: Keebler ]
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desertwind
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posted
Four months of one of the strongest steroids - Dexamentasone.
A complete and utter train wreck that I am still navigating out of.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
Thanks Keebler for "getting it' as to why I asked.
And just so you and others know, high-dose steroids saved my life, on more than one occasion.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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