posted
I'll raise this issue with LLMD at our next appt., but told my hubby I'd ask here in the meantime.
He's recently dxed with arthritis in his shoulder - likely Lyme-related, I'm thinking. He's doing PT for it, but the orthopedist mentioned an injection of steroids in the joint space as an added option. He seemed to think the limited area would be OK even with the Lyme.
Is this an OK thing? Is there one steroid that is preferable to another for Lyme? Thanks for any thoughts.
-------------------- Getting older is when we would rather not have a good time than have to get over it. - Oscar Wilde Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006
| IP: Logged |
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
no no no steroids never ever never unless u are dying IMO
ALOT of us on this board are CHRONIC BECAUSE of steroids.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I had the same experience with an otherwise well-informed and well-intentioned Ortho surgeon. He diagnosed the Lyme before even getting my lab reports. So I hold him in high regard.
But he shot me with cortisone before I knew enough to refuse... When my knee swelled up again recently, I simply had it aspirated, with no injection of cortisone--and it was just as effective as with cortisone. He really didn't know anything about the danger of cortisone in Lyme patients.
Can anyone direct me to a document or study or whatever that I can give to the Ortho? I like to provide my practitioners with written info when I can't really say WHY it isn't safe. I can only say that the Lymenet people said so. ; ) That won't cut it with the medical community.
Thanks!
-------------------- To our good health, Pippifern Posts: 36 | From Cape Cod | Registered: Apr 2007
| IP: Logged |
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
I WOULDN'T TOUCH THEM W/A '100000 POLE OR UNLESS LIFE-THREATENING. ABSOLUTE DISASTER!
ARROGANT ORTHOPEDIST gave me 1 without knowledge of their potentially disasterous effects on Lymies.
LLMDs may allow 1 but it erased 1 year worth of my progress. This is a band aid anyway.
[ 11. August 2007, 11:57 AM: Message edited by: Foggy ]
Posts: 2451 | From Lyme Central | Registered: Aug 2001
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Pippifern~ Dr. B's guidelines at www.ilads.org talks about the dangers of steroids in lyme patients.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
I used to work as a medical interpreter for workers comp and spent a lot of time with orthopedists. Even without lyme, steroid injections oftentimes don't do much other than give temporary relief. You could try NSAIDs, quercetin, enzymes that in the long run could give you better results.
Posts: 984 | From San Diego | Registered: Nov 2006
| IP: Logged |
posted
Thank you all for the backup on my original reaction. I'll let hubby know.
In the meantime, are there any documents I could share with the orthopedist to educate him so he doesn't mess up other Lymies he comes across? We're in a high-incidence area, so any help I can give is great.
-------------------- Getting older is when we would rather not have a good time than have to get over it. - Oscar Wilde Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006
| IP: Logged |
posted
The question of steroid use comes up often. I have Addison's Disease so take 30mg of steroid daily as replacement. In March I was hospitalized with what I now know was a severe herx reaction. Prior to rushing to the Emergency Room, I felt so horrible, thought I was having an adrenal crisis which is life threatening and the treatment is to inject yourself with steroid. I carry an emergency injection kit at all times. I injected myself with 100mg of cortisol(steroid). I actually felt a little better an hour later so I don't know what is meant by using steroids with Lyme. Abusing daily or the amount? I had no bad effects from it. Diagnosed Lyme in June by LLD in Mo. Liz
Posts: 383 | From Ar | Registered: May 2007
| IP: Logged |
When I remember the escalation of severe neuropathic pain into both of my knees after a lumbar epidural steroid injection... The overall pain level of my condition went from a 3 or 4 to an 8 or 9 and has essentially stayed that way for the 4 years since.
But I can only speak for my own world of pain.
Posts: 175 | From Colorado | Registered: Feb 2007
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Pippifern and Penn92: Here's another link regarding steroids and lyme, print this out for your orthopedic doctor:
I hope you have luck educating your orthopedic doctor. Please let me know if you do. Mine had been a friend...he moved out of town before I figured out what was wrong with me. Once I was diagnosed, I wrote him a letter explaining lyme disease, and the steroid/lyme connection....I never heard from him again.
Orthopedic doctors NEED to know about this. If you can educate your orthopedic doctor...please do. Encourage them to educate their colleagues. I'd love for an article on lyme disease to appear in an orthopedic journal...maybe you will have better luck than I did with my orthopedic doctor. Good luck! Keep us posted! Timaca
PS....Here's something that I put together. These are comments from different people on this board and other boards...it may help to convince your doctor that steroids shouldn't go to lymies: (it's long)
The Following are posts from a lyme web site: Topic--Steroids and Lyme
In my case, I went from sickly for years with an unknown illness to barely able to function withn a couple of months of getting several shots of Dexamethozone and prednizone for "asthma."
******************************************************************* Been there, and it was a disaster. I wouldn't touch these shots unless it was a life or death issue. ******************************************************************* Last year before my lyme dx, I had a steroid injection in my back. Ten days after that I got horrible bilateral inside knee pain and could barely walk. To make matters worse it feel like my body was being shaken and a vibration. I was so sick I could barely move. Steroids are a definite no for me. ************************************************************************ Personally (then again I don't know the amount of pain you're in), I would not take them- I was offered steroids from the ortho for my back/syatica pain, but then when he heard 'positive lyme western blot' he quickly re-routed and said I should not take it, and I of course agreed *******************************************************************
I agree -- only under extreme circumstances would I take and have I taken steroids. Like when a disk ruptured in my back and I had to have surgery because the busted disk and swelling was impinging on the nerves that control my eliminative functions. I took steroids for a few days then so the swelling wouldn't make the loss permanent. After the surgery my lyme came back to the same point it was when I first got sick. How much of that was due to steroids and how much was due to the surgery itself, I can't say. But I would recommend using steroids judiciously. ******************************************************************* My husband had severe synovitis from Lyme and, unfortunately, has some joint damage in his hands because some "duck" rheumatologist gave him steroids for a year and NO abx. He was told by an ortho. that he should not have synovectomy or knee replacement since he had "infection" (LD) in the synovium. If you can, get yourself to a LL Rheumatologist ASAP before the damage is done.
******************************************************************* I definitely WOULDN't mess with any ortho docs if you know you have lyme!! *******************************************************************
Giving steroids for a painful joint to someone who has lyme is like adding gasoline to a fire. ******************************************************************* All I'll say is be very careful with the steroids if there's any possibility that you have Lyme disease. A temporary improvement may set you up for bigger problems later. I recommend you take steroids ONLY IF it is with the supervision of a LLMD. ******************************************************************* As you may know, steroids suppress the immune system, so that gives the spirochetes a big advantage. As the spirochete load increases, so does the severity of the Lyme disease. In his Guidelines, Dr Burrascano says "...more severe illness also results from weakened defenses, such as from severe stress, immunosuppresant medications, and severe intercurrent illnesses."
******************************************************************* I had a disastrous experience with a cortisone injection for a strained ligament and am generally opposed to steroids. ******************************************************************* Doc #1 looked at my swollen hand, said I had an "unknown infection" and gave me steroids. When I asked, he said it "couldn't possibly be Lyme." Doc #2 (one week later) PUT MY HAND IN A CAST, despite clean x-rays. Said it could be Lyme, but he would not test for it, and I should go see my regular doc. Doc #3 (less than a week later) the "fractures" are spreading to different joints, so I take off my cast and make an appointment with my friendly walk-in doc. By now I've read about Lyme on this site and know what to ask for -- a Western Blot, and to start me on doxycycline. He is hesitant, but agrees. He calls me as soon as the results come in, with surprise in his voice. Yup, positive. ******************************************************************* Steroids are lethal to lymies. *************************************************************************** Old doc would never make an appt with anyone else, he said he could treat me just fine, lots of pain killers, steroid shots in knee, right back hip and then along spine. I am lucky he didn't kill me. *************************************************************************** Do any of you get skin burning pain? Nancy, did you ever take steroids? I got this awful pain from taking steroids, even for a few days. I subsequently learned the burning can be a neuropathy Lyme patients describe. I have suffered with the burning skin pain for a very long time along with the shock sensations. I have the problems too of extreme sensitivity of anything touching my skin causing unbearable pain. It is among one of the most difficult symptoms I have had to deal with. I am going to try a new therapy, hopefully soon, and pray for relief. My prayers are with all of you who suffer from this. ******************************************************************* My experience was very negative last year and that's when lyme symptoms became full blown. I had two steroid injections with in a few weeks and it almost did me in. Steroids suppress the immune system and this enables the lyme to grow out of control. I personally will never do steroid injections again or ingest anything with steroids i.e. flonase. ******************************************************************* Ditto, absolute DISASTER and I'm still paying for it. Set my body on fire, erased most of my progress, and caused a host of problems. These are a Band Aid, can make Lyme flare, and have no guarantee that they'll give relief. ******************************************************************* In asking a pharmacist about this issue he said "Steroids are to lyme like fertilizer is to grass. It makes them both grow." ******************************************************************* I was UNtreated for lyme for 12 years slowly declining until a steroid injection completely disabled me. Two years after this injection I finally got to the root of my many many problems, lyme disease. ******************************************************************* All I know is that from my own experience, steroids made me flare up so bad that I prayed for death a few times!! This was before I was diagnosed and it scared me really bad because I did not know what the heck was happening to me. ******************************************************************* You didn't by chance, get a steroid shot into your shoulder at any point did you? It seems in my case, I had latent lyme, and ONE steroid shot into my knee set it all off. I was suffering with weird symptoms for a year and a half before figuring out that I had lyme, and it was the steroid shot that "activated" it. ************************************************************* You hit the nail right on the HEAD! Yes, indeed did have a steroid shot. I KNEWWWWW at the time I shouldn't, but I had NOOOO lyme symptoms for four years and I truly thought this was just a sports injury. And as I said, it may HAVE BEEN ONE, and then the steroid and lots of stress and blah blah and VWALA (how do you spell that word...the french vvvwwwaaallllaaa?) I got Lyme again. No more steroids shots for me ever ever. ************************************************************* Does this sound like Lyme? In 1992 had 3 small bullseye rashes under left breast. Didn't think anything of it. Never heard of Lyme. Then I developed severe eye pain with floaters. Then I developed severe hip pain. I cried for months. Six months later developed sudded muscle twitching all over my body, followed by weakness, numbness, tingling all over from head to toe. I also had fevers, severe nausea, brain fog, diarrhea, bizarre rashes and elevated liver enzymes. Saw neuro, had spinal tap and MRI of brain both normal. He said he had no idea what was wrong but that I had a "central nervous system disorder" Symptoms persisted. Heard about Lyme. Dr's told me no such thing in Ohio. I went to LLMD in PA. Tested negative. He treated me for several months with oral antibiotics. I started getting better. It took years. I have never been completely ok. I still have weird rashes and fatigue. Four months ago developed sudden leg weakness,numbness,tingling. MRI of c-spine showed bad disc. Had fusion done 8/05. A few days after surgery developed muscle twitching and numbness and tingling all over(after starting steroids).. Surgeon said not from surgery. Neuro said he "did not have a clue" what was wrong with me. Referred me to another neuro who said maybe "immune spinal cord inflammation". Does anyone have any comments. I don't know where to go next ******************************************************************* I had a spinal fusion(I made a post of my whole story in medical on I think 10/14 if you feel like reading it) I received Vancomycin 1 gram IV on the way to surgery. I had severe pain in my neck and arms starting 1 day after surgery. It was so bad I was shaking. I saw the surgeon on post-op day 3. He started me on steroids. The next morning I started with numbness, tingling all over my body with muscle twitching all over my body. It's been over 8 weeks and still have bad leg weakness, tingling all over, down my spine, down to my toes. Dr's can't seem to find an answer. ******************************************************************* Patti- It's a long story but a good one and I'll give you the shortest version: I had a steroid shot (by the same doc that did timica's, but in a different state than hers!!) and I had 6 full months of hell afterwords. Absolute hell of tingling and numbness and pain pain pain in the right shoulder all the way down to my finger tips.
No tests showed anything. MRI, x-ray, EMG did show nerve root damage but from WHAT---no one knew--no injury or accident. (lyme does destroy nerves I found out later) This was all this past winter and I had lyme diagnosed and treated in 2001 and was treated for 9 months and thought cured.
my PT finally sat me down and said---look hon, you got something else going on here that I have never seen in all my 30 years of practice. You are gonna end up with RSD if you don't get treated for that lyme or whatever it is.
It was the steroid shot that really got it going. I am so thankful that I do not have those sensations any longer. I hope you can get some relief for yours! And please dont allow any other steroids ever ever ever. What about all the ducks that put me on steroids for a rash they could not figure out its origin? Lets just stick her on steroids!!! the cure all for derms! No proof that it was the right thing! Lets just try! I dont see anyone trying to take their license away! That did me more harm but hey what the heck! I mean I went back continually telling them that it was not working but they still kept trying! Then I wised up and walked out.
I had 3 very different dxs from ducks re both my intensely swollen right knee and the numbness in my right foot.
A very highly-regarded duck drained my knee twice and shot it full of cortisone, despite that just exacerbating the situation.
All the ducks were positive, they said, that they knew exactly was wrong.
They hurt me, not just with treatment but also with time lost because I wasn't on the right track.
Nobody questions their judgement... *******************************************************************
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
i have neuro lyme. even getting PT for "closed head injury"symptoms. the vertigo/nausea is overwhelming. tried a multitude of meds-none work. finally was put on a 6 day medrol pack. within 24hrs i was nausea free. this is the 2nd time this has worked for me. my docs are very leery giving it to me, but they and i carefully monitor for any complications. thank god
Posts: 76 | From Kalispell, Montana | Registered: Dec 2006
| IP: Logged |
posted
They can put all the steroids in me they want - WHEN I'M A CORPSE!!! Till that time, never, ever, ever...
GP that didn't know any better gave it to me as he was telling me we don't have Lyme in Tenn... to put on my almost frisby size stomach rash. I didn't know better then, and I used it for the itching.
If life had a "refresh button" that's the moment I would go back to. Please don't do it - there are other ways of dealing with it - accupuncture, herbs, massage, anything but the steroids. I call it miracle grow for Lyme.
Think & pray on this decision then follow your intuition.
Posts: 176 | From Tenn | Registered: Jul 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[bonk]](graemlins/bonk.gif)
![[bow]](graemlins/bow.gif)
Timaca....If you'll shorten those **** the thread will go back to the regular width.
Printer-friendly view of this topic