I've not been getting better and went on a month of Levaquin - got much worse - worse symptoms in 2 years (all symptoms not just muscle/tendon)
LLMD stopped all treatment last week since still in so much pain. He gave me a cortisone shot and 3 days of Prednisone to try to alleviate the worst of syms.(Worst in 2 years!) Got almost complete relief within a couple of days but it started coming back within a couple more days. Now I'm back to pre-Lev levels.
Was this unusual? LLMD said that can only use steroids extremely short term. He wants me somewhat better before trying yet another treatment.
I temporarily felt SO MUCH better - actually got 2 good nights sleep before starting to feel worse again.
Posted by geniveve (Member # 8646) on :
pam, my llmd said to never, ever have any steroids, but then again maybe somebody else has something different.
but just from that, i'm scared witless of steroids and would never have them............
Posted by Lymetoo (Member # 743) on :
Three days of prednisone MIGHT be OK, but I've never heard of an LLMD who used cortisone shots! Yikes! HOpefully, it was a small dose??
Next time, just back off the meds when you have a super herx. Then you won't have to resort to steroids.
I've heard that SMALL dosages for life-threatening situations are OK if the patient is on abx at the time.
Posted by SForsgren (Member # 7686) on :
Hope to Heal Lyme Conference - over and over again they said not to take steroids period.
Posted by 5dana8 (Member # 7935) on :
No Way! No how!
your body may pay for it later.
The only way I would take a steroide in any form,
is if I where told I was gonna die.
And then I would think about it real hard.
Posted by duramater (Member # 6480) on :
In Europe, it is relatively common practice to use steroids in combination with antibiotics -- steroids to blunt the run-away inflammation and its concommitant symptoms, and antibiotics to get at the base problem, the infection.
My LLMD and my current doc have also used steroids (to control allergic reactions) while I'm on antibiotics. In fact, that is my current situation.
Taking steroids on alternate days makes a HUGE difference in how little it affects the adrenals, btw. A technique used by lots of asthma docs in addition to tapering the dosage as one goes off the steroids.
Posted by flossie (Member # 3384) on :
although i've heard over and over that it's not good to use steriods, i also have learned over the years that there's almost no absolutes in this weird world of lyme. so i wouldn't freak out, it was very short term and may have been the right thing to do.
recently my boyfriend was told by his LLMD that he might need a day or two of steroids to stem herxing and reduce inflammation during a particularly intense drug treatment... and he's seeing one of the most alternative, holistically minded docs around, who's incredibly careful about not suppressing the natural immune system. so while it's probably generally not good, and certainly not a good long-term strategy, it may soemtimes be necessary to use it...
best of luck flossie
Posted by [email protected] (Member # 8111) on :
It helped SO much - it's too bad there's nothing that can make me feel like this all the time. I'm still feeling better than I have in a long time.
I go back the 27th to see what's next.
Posted by gambler (Member # 8441) on :
Before I had any idea about Lyme, I took zithromax for suspected walking pneumonia, two days into my head hands and neck hurt beyond anything I have the ability to describe, I went to the er and they gave me prednisone.
they thought it was meningitis, and at that point I was like, fine do whatever, make it stop. Well the prednisone helped enough that I decided to go home and not get the ct scan and the spinal tap.
I was sure it was an allergic reaction to antibiotics as I seemed to be allergic to all of them (close).
Even knowing what I know now, I would still take the prednisone in that position, that kind of pain cannot be benign, I have no idea how it might have effected me with Lyme, but it probably saved my brain some damage.
Posted by brentb (Member # 6899) on :
I've been on predinose for awhile now. I don't like it but I can't function without them. My doc stated it was due to adrenal stress and that the normal steroid production was not occuring and needed a little bit of help. There are test for this. My goal of course is to get off. Another thing to consider is that borrelia is a stealth pathogen so weakening the immune system is not as detrimental as one would think. complicated issue to be sure.
Posted by SForsgren (Member # 7686) on :
Even IF I agreed that weakning the immune system was not an issue since Bb is a stealth pathogen (which I do not), what about Babesia, Ehrlichia, Bartonella, parasites, viruses, on and on. The lower your immune syste, the more the balance shifts in the favor and the sicker we become.
Posted by Mathias (Member # 5298) on :
I had an LLMD that would use steriods in combination with antibiotics and did have success with that protocol. Every doctor is different but the majority think steriods are a no-no.
Posted by brentb (Member # 6899) on :
quote:Originally posted by SForsgren: The lower your immune syste, the more the balance shifts in the favor and the sicker we become.
You don't believe borrelia hides from our immune system? Your other points are very well taken. My body has silver ions, oil of oregano, vitamin C and other natural abx circulating through me so I'm fairly toxic to any opportunistic pathogens. If not for my regime I'd agree with your statement.
Posted by flossie (Member # 3384) on :
scott - i also take your point... but have been told by one of our LLMD's that with severe neurologic infections and certain drugs, the extreme herxing that can result may in some cases result in real damage... and that this can be avoided with low dose 1 day steriods to cut the reaction. it needs to be properly timed, and is generally just one pill...
Posted by Foggy (Member # 1584) on :
quote:Originally posted by duramater: Taking steroids on alternate days makes a HUGE difference in how little it affects the adrenals, btw.
Yes, they screwed up my adrenals BIG TIME! Be VERY careful.
Posted by duramater (Member # 6480) on :
quote:Originally posted by Foggy:
quote:Originally posted by duramater: Taking steroids on alternate days makes a HUGE difference in how little it affects the adrenals, btw.
Yes, they screwed up my adrenals BIG TIME! Be VERY careful.
Taking steroids on alternate days DECREASES the effect on the adrenals. By taking it alternate days, it allows the adrenals to resume functioning whereas daily steroids will eventually suppress some adrenal function depending on duration of treatment and size of doses. I wanted to be clear on that since my quote was taken out of context.
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