I am taking steroids and they aren't good for Lyme sufferers, right?

[Hope75]

I have tennis elbow and my doc gave me a steroid shot and steroid pills for 7 days!  Yikes!  I hear this is not a good idea!?  I am halfway through my first day of steroid and on my third day of minocycline.  I feel bad and then I feel good.  I'm right that steroids suppress the immune system and mess with your Lyme's right?

Concerned!!!!!

[wonko]

Some doctors will use steroids to ease a Herxheimer reaction.  As with any treatment, you need to weight the risks/benefits.  It sounds like you've heard advice both ways, a well as patient experiences.  

Note that in the "early days" of Lyme in the US, before it was discovered to be infectious, steroids and aspirin were used to treat.  Allen Steere, the rheumatologist that was first on the scene in Lyme, CT, thought the disease was a new entity, and did NOT think it was bacterial.  Some feel his choice of treatment was biased by his background.  Perhaps if a neurologist had been the first to treat patients, the focus would have been on the neuro symtoms and not on the joints.

For years, Steere treated patients with steroids and denied any benefit from antibiotics.  It was slow to come to light that Lyme is not a new disease, but a tick-borne infection that had been observed in Europe for a long, long time.  Even after the discovery of the Lyme bacteria by W. Burgdorfer in the early 80's, there was resistence to labeling it an infectious disease and treating it with antibiotics.  

(This is all discussed in "Cure Unknown" by P. Weintraub, I hope I have the general facts right, but please read for yourself if this subject is of interest to you.)

So controversy over Lyme treatment is nothing new, it's as old as is the disease in the US.

Good luck with the LLMD.  I was "lucky" and got someone's cancelled spot in about 5 weeks from my initial call.  My initial appointment fee was comparable, and did NOT include testing.  It also lasted about four hours, during which we went over the year's worth of medical testing/appointments I'd been through, and a detailed history.  

Since you've already gotten your Igenex Western blot, you're ahead of the game.

[Hope75]

I took only the first days worth of doses.  I called a Lyme friend and she said "no way" on the steroids.  I think I'll just wait for the shot into the joint.  

I have an issue though, my neuro, who is trying to treat me, doesn't seem to understand the debate over steroids.  He has already mentioned them several times - if I get a bad Herxheimer reaction to treatment, he wants to treat with steroids!  I don't know what to do, so I am currently missing my dose of steroids today due to fear of messing myself up further!  I called a pharmacist friend and he said I could cold turkey it since I've only been on it one day.  I think this elbow thing is Lyme arthritis b/c I haven't changed anything I've been doing - no repetitive motion, no tennis, no nothing.  I've been typing for over 15 years, so nothing new there.  My other elbow is showing signs of the same thing now!

I am about to call an LLMD right now and just plunk down $500 for a deposit and be put on the wait list.  I am too scared not to...

[patsy10]

I took the steroids too for my supposed neck issue.  I got worse after taking them.  The problem is, once you get a prednisone injection (not the joint injection but the muscle injection which is systemically absorbed) you are supposed to take the taper down dose as prescribed.  I would check with your doctor regarding the prednisone.

Good point wonko regarding the lyme arthritis.

[wonko]

I know that I had a pretty strong reaction here, but really, I think the steroids are a very bad idea.  I don't know about the shots, but given my experience, I'd be shy of that option as well.  I would at least want the opinion of a LL doctor before trying it.

I was put on a 15 day course of Prednisone (max dose 60 mg/day) in August, 2008.  I started treatment for Lyme in Dec., 2008.  Now, in late May 2009, I am STILL not back to where I was health-wise before the steroids.  

It is a huge regret of mine that I took the steroids.  I was first prescribed them back in Feb., 2008, but didn't take them until much later because I was concerned about treating an unknown condition.  By the time August came, I felt desperate.  I deeply regret it, I developed many more symptoms and became much more sick soon after.

Of course we all need to navigate our situations as we see best fit.  I'm just sharing my experience.  

Hope75, have you considered that your tennis elbow may be Lyme arthritis?  The doctor treating your elbow doesn't seem to be very LL, as you state he "doesn't have a clue."  

[gorbybelle]

I had 6 shots of cortisone into my trapeziums - I had a wierd reaction that lasted about 2/3 days - lots more pain in neck /shoulders - which caused high anxiety - I thought it had made me permanently worse - not a good few days!! - but once that settled - I would say it helped quite a lot - I am pretty sure the shots haven't affected 'lyme' - though I am only guessing of course.

[cindy903]

My orthopedist is actually lyme friendly. In fact, he uncovered the reason for all this tendonitis -- by ordering a test for Lyme.  I'm actually over my tennis elbow thanks to him. So, if you can don't mind risking a shot, it may prevent you from further pain down the road -- or even surgery. Most orthopedists know about Lyme -- as hard as this is to believe. My doctors see it as a possible explanation for all this repeat business!

There's just not enough known about why some go on to this next stage! I wish we could ban together for research somehow.

[Hope75]

I agree from what I've heard from Lyme friends and what I've read here.  He said for me to come back in a week and if the pills didn't work - he would put the shot into my elbow.  I think the localized shot should be better than the pills.  I am deciding to stop them tonight.

I definitely told the steroid doctor about being treated for Lyme right now and GUESS what - he said it didn't matter.  He obviously has no clue.  I have to follow my gut.  I might just go back in a week if my elbow hurts and tell him they didn't work.  I don't even want to argue with him - he' s just an urgent care PA that was in a hurry.  I walked-in so i could be seen on my day off.  It seems like I can't get any medical care except from my doc who is lyme "friendly".

[wonko]

Good point, cindy903, to separate the shots from the pills.  

I don't know much about the shots, just the pills, that is to what I was reacting.

[cindy903]

I have never had the pills! Cortisone pills might not be a great idea.Localized shots should be okay.

[cindy903]

Everyone's different. I've never had a problem with cortisone shots and I've had plenty since getting whatever it is I have this past year. I've had two in each pinky and one in my tennis elbow and four shots in each heal for possible plantar fascitis.

I have never noticed a difference in the LD symptoms after a shot. So, you could very well be okay. It does suppress the immune system. When I get the shots, I'm VERY sore at the site of the injection. For example, when I get them in my feet, I sort of limp around.

Good luck with the mino. I'm glad you're feeling better!

[wonko]

From the autoimmune expert forum today:

http://www.medhelp.org/posts/Autoimmune-Disorders/Lyme-disease-and-or-hypothyroid-and-or-adrenal-fatigue/show/955538?post_id=post_4483063

[wonko]

This is a HORRIBLE IDEA.

http://www.johndrullelymefund.org/antibiotics_and_steroids.htm

My doctor (the same one who was certain I did not have Lyme) put me on Prednisone.  It gave me a week of relief, followed by deeply worsened illness.

I lost the ability to work full time shortly after.

Steroids do suppress the immune system.  Did the Rx-ing doc know that you are on abx for infection???

PLEASE call his/her office and ask to clarify.