TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
I've been around long enough to know that steroids are a no no with lyme. Butttt, after getting sick with lyme in 2002, and NOT experiencing shoulder pain until 2004 and then dealing with it for two years, I came to realize
that I may actually have a problem with my shoulder, or seriously done something wrong to it *other than lyme* since I had done two years of abx ( and no quinolones which cause tendon damage)
BEFORE the problem started. In fact, on one of my *good days* two summers ago, I was tilling up some weeds with a hand held tiller that you have to twist and I do recall hurting my shoulder then.
I also know I re-hurt it shoveling snow.
I finally drug myself to an orthopeadic ( I cant spell) doc who did some xrays and diagnosed bursitis and tendonitis. And he started filling up a needle and said " I will inject you and the problem will go away"
INTO the injection, he said it was a mix of lidocaine, novacaine ( I believe) and cortisone. On top of that, his injection sucked and he hit a nerve. BUT ... its only been since saturday, but I have NO shoulder/neck/jaw pain on my right hand side.
Thing is... my head doesn't feel all that great, and it hasnt felt really this "weird" in a while. I didn't ask how much steroid was in that injection. he wants me to go back for two more ( no)
and if that doesn't help, surgery ( no). He himself said infection can cause bursitis and lyme is one of them that can cause it. Odd though how two years INTO treatment I got the problem. And trust me, its one of my ONLY ONES left.
Has anyone had a problem with just one injection or anything? Is there something else I can do for this bursitis? I thought I could get just a lidocaine injection. Im about ready to stick my bicillin in it.
I just dont want to back slide, and I know I have no control over that if I do because of that cortisone.
Thanks for any thoughts. Crime
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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Foggy
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Member # 1584
posted
Crime, sorry you're having so much pain. I had shoulder and back problems and they were brutal.
For me 1 back injection set my body on fire and erased 9 months of treatment. Was an absolute disaster, and I got my LLMDs OK to have it. This caused as much grief as the pain. Unfortunately for Lymies, pain is so agonizing that we are forced to take risks others don't have to take.
Do what you're doing: ask allot of questions, look into alt treatments, talk to the MDs, PTs, and others who've been in the same boat.
In hindsight, I would've stuck with PT, TENS, and looked into Prolotherapy and Vax-D for the back stuff. Fortunately, the shoulder got better on it's own in about a month of PT, Ice, hot tub, TENS, and meds.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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lymeinhell
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Member # 4622
posted
I had this done in my neck (cervical epidural) before I was dxd with Lyme. I also had the neck,shoulder, jaw pain thing. I was incredibly loopy after the first injection and got a massive headache for days. Like a dope I went back for the other 2 injections. Pain relief was only temporary and was back in a week.
The neck pain went away with abx treatment, but I still had the shoulder pain.
Regular trampoline (rebouding) exercise has completely eradicated it. I do lots of punching action while on it. It was like magic - all gone. I wish I had started using one sooner. Also helps immune system, balance, not to mention plain old good exercise.
Good to see you around (but then again, sorry you're back).
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Jodi there are local steroids that only last a few days there new generation they injected them in my right foot for a bone spur I cant remember what the name of the two types were The Dr said they were nothing like cortozone??
If in fact they only work locally I cant really see the damge unless it relly is spirochete caused ie them being right there?
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Here is an overview to consider on the use of steroids by the late John Drulle,M.D.
Antibiotics and Steroids From: Lyme Disease 1991: Patient/Physician Perspectives from the U.S. and Canada Lora Mermin, editor
by John Drulle, M.D. "Corticosteroids, or steroids as they are commonly called, are very important drugs in a wide variety of medical conditions. They exert an anti-inflammatory effect and suppress the immune system. This may be life saving in some diseases such as asthma and malignancies. On the other hand, steroids are rarely curative, and are associated with harmful side effects if used for prolonged periods of time. These include bone loss, cataracts, sodium retention, weight gain, abnormal fat distribution and predisposition in other infections. "The use of steroids in infectious diseases has always been controversial. It is well known that steroids can reactivate dormant tuberculosis infections. Recent studies have shown that in meningitis infections steroids may decrease the incidence of post infectious complications. However, in cases of septic shock, their ability to improve survival rates is dubious. We have been traditionaly taught that in bacterial infections an intact, well-functioning immune system is necessary in order to recover. Steroids in the face of bacterial infections may alter the prognosis and in tuberculosis may actually increase the risk of fatality. "Since Lyme is a bacterial infection, the question naturally arises as to what is the role of steroids in Lyme disease. Before the bacterial nature of Lyme was discovered, it was common to treat the arthritis complications and heart blocks with steroids. Early reports suggested that the heart blocks responded well to the steroids. However, in one report dealing with patients with Lyme arthritis, steroid injections into the joints prior to antibiotic therapy were associated with a worse prognosis when antibiotics were finally given. We have seen literally dozens of patients with Lyme who were initially treated with steroids who reported a dramatic worsening rather than improvement as would be expected. Dr. Joseph Burrascano has coined the expression, ' Steroid Disasters, ' to describe these patients. "It is interesting to note that in dogs who had Lyme disease, injections of dexamethasone, a corticosteroid, enabled Borrelia burgdorferi to be cultured from blood drawn on the following day. This was done by Dr. Elizabeth Burgess at the University of Wisconsin. This suggests that the steroid suppresses a mechanism for keeping the bacteria out of the circulatory system, since ordinarily it is difficult to grow the Lyme organism from the blood. Entrance of the bacteria into the bloodstream can allow seeding of other organs. "I have used steroids in Lyme patients, but only in very selected circumstances. In patients who have presented with eye involvement with rapidly deteriorating vision, such as optic neuritis or uveitis, the combination of high dose steroids appears to restore vision more rapidly than by using antibiotics alone. I have also used steroids in combination with antibiotics in patients who presented with a Lyme induced polymyalgia rheumatica (PMR). "PMR is a common disease of elderly people characterized by pain and stiffness in the muscles of the upper arms and legs, fevers, malaise and weight loss. The ESR, sedimentation rate is elevated. In its classic form, the cause of the condition is unknown, and the dramatic response to steroids is in itself diagnostic. I have personally seen three cases of Lyme induced PMR, which did not respond to steroids alone or antibiotics alone, yet when the combination was given the response was dramatic. "In conclusion, the decision to use the steroids in a Lyme patient must be given considerable thought and the possible benefits must be weighed against the risks. I would not use steroids unless the patient was also on antibiotics." The following information has been added by J. Gruber: * JD Bleiweiss "When to Suspect Lyme" * JJ Burrascano "ADVANCED TOPICS IN LYME DISEASE - DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES" o specifically his chapter "Course During Therapy" * Links provided by A Doherty o http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html#J-H o http://www.geocities.com/HotSprings/Oasis/6455/newsgroups-links.html * J. T. M. FRIELING et al., Differential Induction of Pro- and Anti-Inflammatory Cytokines in Whole Blood by Bacteria: Effects of Antibiotic Treatment, ANTIMICROBIAL AGENTS AND CHEMOTHERAPY, July 1997, p. 1439?1443 Vol. 41, No. 7 * Burrascano's Guidelines and Immune Response Modeling o J Gruber, Burrascano's Guidelines and Immune Response Modeling o J Gruber, Evaluation of the long-term inflammation in neuroborreliosis o J Gruber, Lyme Disease: Statistical Evaluation of a Symptom Log and an Empirical Theory of Flare Cycles * Andrew R. Pachner, Lyme Borreliosis in Rhesus Macaques: Effects of Corticosteroids on Spirochetal Load and Isotype Switching of Anti-Borrelia burgdorferi Antibody, Clinical and Diagnostic Laboratory Immunology;Vol.8, No. 2, (March) 2001: 225-232 Location of this page is http://www.Lymenet.de/literatur/steroids.htm Home of this server is http://www.lymenet.de/ Send comments to Joachim Gruber
Posts: 2708 | Registered: Feb 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Better yet
Artificial joint fluid (Synvisc, Hyalgan). These medications can be injected into the knee, They may relieve pain for up to six months.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
I'd definitely go with the Synvisc.
I know in horses, it's mixed 50/50 with steroids- don't know about the people version though- but have talked to acouple of people who said it totaly fixed their joint problems.
I beleive it works by normalizing the viscosity of the joint fluid - but I don't know the mechanism.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Also it may out of place loose ligments and cartilage may be leaving it drop out some mine have done that I put my own back in but you could go to chiropractor and have them put it back in and do exercizes with it after its in light exersize making circular motion realining the bursa. Then take your suppliments complex b and magnesium and cq10, glocosomine.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Hey thank all you guys for your replies. At this point, Im willing to try anything, except more steroids LOL.
Foggy- Im so sorry to hear that happneed to you. It scares the witts out of me too! I do have a TENS unit and it worked great in the beginning, now nothing.
Tree, thanks for all the info, Im going to look into that synovism ( I cant spell again) that you posted about.
Lymeinhell- a trampoline is looking better and better to me.
Well, I posted this AM before I went to work and actually USED my shoulder. I lied.. the injection didn't help and Im in pain AGAIN.
Thanks everyone else that answered. I cant remember all the names but dont want to leave anyone out.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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posted
Hi Crime! I also had bad shoulder pain. I was supposed to go for PT, but decided to save my money! I did go to a chiropractor and his treatments have helped.
Seems alot of the pain was from my neck, though I was dxd with tendonitis in the shoulder. Maybe the neck pain made it worse.
I refused the steroid shots and the ortho doc understood. He even said he wouldn't do surgery until a last resort. Fine with me.
Anyway....if you feel you have to have more shots, I'd wait and see what repercussions you have with this one. [already you have some...ugh!]
Take care!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
3.5 years ago, my left shoulder really hurt. Seems it was the beginning of a bone spur. Had what I guess was a cortisone injection. It took two weeks to work; then I was fine for 2 years.
It's much worse now. Had a MRI and there seems to be a spur, cyst, fluid. Go to Ortho tomorrow. I had no effect with my first shot; don't expect any if that is the way to go until I move back to the West coast in June. Need to pack and not worry about the pain that comes with certain movement. Need to get that inflammation down. Have been on glucosamine for years.
-------------------- tj Posts: 296 | From Portland, OR | Registered: Jun 2003
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posted
Ok this steroid injection thing is interesting. After a week ago having a totally inappropriate pain and swelling (rheumatic type) reaction in my hands and body after a little gardening the doctor ordered all the tests I posted about previously, (Lyme, RA, CD57, CBC).
I had the blood drawn, went to see him, he drained my knee and sent that off for a Lyme screen and injected me with steroids -this knee I had surgery on in Dec and it's still not right, swollen and fluid filled.
The day after the injection I felt like a million bucks, better than I have in ages, relatively no stiffness, and what's interesting is the edema in my legs and ankles that has sent me back to my compression stockings totally disappeared. I mean, like it was sucked out with a hose. I can see my ankles, my shins, not a trace of pitting edema to be found, and this had gone on for months (I have had vein surgery, shouldn't be an issue now).
Over the weekend, still no swelling, some pain but certainly not the most severe I've ever had - but CRUSHING fatigue, like I couldn't get off the couch. Still much the same today.
Something in me reacted to the steroids in a good way, and now I seem to be suffering some kind of backlash. Very odd.....but if it has compromised my immune response which is already depressed per the CD57, well, no wonder I feel like crap.
Posts: 18 | From NH | Registered: Apr 2006
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Foggy
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Member # 1584
posted
Riga you were lucky. 1 shot totally messed up my adrenals and caused fluid problems etc. Ironically, had to take physiological (low dose)steroids to restore the problem. Posts: 2451 | From Lyme Central | Registered: Aug 2001
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Thank you all for your replies. I felt that crushing fatigue today, had alot of shakiness this morning and still just don't feel well. my shoulder/neck/jaw hurt me off and on, BUT more off than on.
I will be looking into alternative healthier ways to get rid of the pain, no more shots for me!
Crime
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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trails
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Member # 1620
posted
I am on the verge of tears reading about your steroid shots and what kind of doc would drain fluid and test it for lyme and give a steroid shot immediately afterwards????? That is the craziest thing I EVER heard of!
Sounds very scary if you ask me.
I have shoulder problems and had them pre-lyme. But it is well known that lyme can settle in "problem" areas, as they are somehow "weak" which is what I beleive my shoulder is.
When I was training for a triathlon in 2004 I had some intense shoulder pain that was reminiscent of my lyme feelings, but I didnt have ANY other lyme symptoms. SO...I went to an ortho who gave me steroid shot.
I felt super great for 3 whole days and then my world came crashing down around me in ways that still persist to today. It is my belief that THAT steroid shot began the downwards spiral into chronic lyme that I havent been able to crawl out of for years now.
Previously I had been able to crawl out of lyme (2wice)and got well enough to complete triathlons and feel wonderful physically.
Now I cry in pain most of the time.
Orthos just know steroid shots and surgery. That is about it. If they cant cut or shoot stuff in you, they wont treat you.
It took several months of my PT telling me that this was NOT a sports injury until I finally broke down and cried for hours in her office and revealed that I had HAD lyme in the past. She was right. It was a relapse. If I had stayed with the ortho, he would STILL be shooting me with steroids!!!!
I dont have any answers as to what to do otherwise, I just KNOW that steroids can cause great damage. great great damage.
best to you, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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quote:Originally posted by trails: I am on the verge of tears reading about your steroid shots and what kind of doc would drain fluid and test it for lyme and give a steroid shot immediately afterwards????? That is the craziest thing I EVER heard of!
[/QB]
Amen! I was thinking the same thing! Ducks just don't get it.
Hope you don't get any worse, Rigor.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
You guys expect too much! Do you really expect an ortho to know anything about Lyme?
Well, first of all he's just an ortho, not an infectious disease specialist. He was treating the knee that he operated on, which by rights should be fine by now but isn't, we don't know why, so he's covering his butt and trying to relieve the irritation in the joint. I don't believe that what's going on is related to the surgery, myself. I knew he would inject it again so I made sure I had blood drawn before.
I only insisted on a Lyme test because of what a friend had just gone through and also figured the only way I was going to get a Western blot was to be sneaky about it and have my joint fluid tested. My friend had severe Lyme symptoms, had been 'un'tested by his GP, told he was 'getting old' by the ID doctor who, by the way, blew off an equivocal antibody test, blah blah blah...
....until his knees became so swollen they needed to be drained. That was when they found Lyme because the ortho was smart enough to test for it, while his GP and infectious disease specialists let him down.
quote: Orthos just know steroid shots and surgery. That is about it. If they cant cut or shoot stuff in you, they wont treat you.
EXACTLY. I can't even get him to discuss the high RA test or the Lyme results, it's black or white, screaming positive or negative, no nuance, no gray area, it's definitely not HIS area. He merely wants my knee surgery to be successful because he doesn't want problems.
Posts: 18 | From NH | Registered: Apr 2006
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timaca
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Member # 6911
posted
I had latent lyme in my body (probably for 10 years) and ONE steroid shot in my knee activated it. 3 weeks to the day after that shot, I started falling apart.
The orthopedic doctor had NO idea what was going on with me. He watched me fall apart, and was genuinely concerned, for I was his patient as well as a friend.
After knee surgery, I had a J-H reaction to the vancomycin given to me. Again, the ortho doc had no idea what was going on with me. He just didn't know about lyme disease. I'm sure he had been taught little about it.
I continued to fall apart. My ortho doc moved out of town, and ended up giving Trails her steroid shot which caused her to fall apart.
Amazingly enough, Trails and I figured out that it was the same doctor who had given us both our shots.
I wrote him the nicest letter I could, hoping he would be the one to help educate other orthopedic doctors. Unfortunately, I never heard back from him. That hurt...for he was a friend too.
I am hoping to someday find an orthopedic doctor who will listen to me and learn how to spot lyme disease in their patients. And share that knowledge with others. It is so badly needed.
I believe it will happen....someday. In the meantime, if you have lyme, be very, very careful about the use of steroids.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I had a single cortisone injection in my hand to treat a strained ligament in 1993. My hand immediately swelled up and I had excrusiating pain. Over the next year my hand became useless & I was in constant pain.
I had surgery to remove the scarring from the injection which caused a lump to form and press on a nerve.
After the surgery I recovered very slowly. I still had pain. I started working with a greatmadssage therapist who massaged & stretched my hand for an hour & 1/2 each week. I slowly regained range of motion. If I skipped a week my hand hurt more.
When I got lyme I had Bell's Palsy and was given prednisone (oral steroid). It reduced the swelling and pain that I had had in my hand for 11 years. Once I got on antibiotics my hand really started to recover. I think the Plaquenil and Biaxin ended the swelling for good.
Now my hand is close to normal thanks to the Lyme treatment.
I would never let anyone inject me with Steroids again. hats
Posts: 956 | From MA | Registered: Nov 2004
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TheCrimeOfLyme
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posted
I must admit that I am now completely scared chitless that in a little while, maybe a few days, or weeks, I am going to flat out relapse.
I am on antibiotics at the moment, which hopefully will save me from going through heck, but I have this lingering feeling ( plus I dont feel too well) that something just isn't right.
It's my own fault, I feel like such an idiot that I took that shot. Just when I was getting to where my lyme was pretty much manageable except that stupid pain, I went and introduced myself to a possible relapse.
If I dont relapse from the shot, Im going to THINK myself into one. Ugh.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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Foggy
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Crime, at least you're on abx. My orthoduck told me to lay off due to interactions. Big Mistake! We live and lean, the hard way.
That said, I'd take a deep breath and keep the faith. We're all so flooded with issues and the desire to be well that it can be overwhelming. Hang in there.
If you have any problems call the LLMD for assurance or suggestions.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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TheCrimeOfLyme
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Member # 4019
posted
thank you foggy. I'm being positive, and will be ok. Crossing fingers
Told you to lay off the abx? what a nut! Ugh.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I am sorry if what I said scared you. I was worried it might. But I also feel very strongly about this.
There is NOTHING you can do about it now, though. You must move on and forgive yourself and try your hardest to tune into your body and see what it needs.
I am glad you are on ABX...this may help and you may not relapse really badly. I am glad you got just ONE shot as there are cases of people who have more and who REALLY dont get well. I think one might be a set back but not a death sentence.
Sorry again for the scare, Hope you can have some pain free days soon, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Nal
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posted
This is very interesting. As you have probably seen from my other posts, I am having terrible right shoulder problems now too. Its ridiculous! I get lots of tingling, pain, etc in the shoulder and arm.
I am seeing my dr on Monday. No steroid shots for me. I remember when I took a medrol pack last year (before I knew I had Lyme). It made me so sick. However, I have known some Lymies who have taken steroids and have had no problems. I think everyones body is different.
What do people with asthma and Lyme do? The inhalers have steroids. Does that not have the same effect though?
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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TheCrimeOfLyme
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Member # 4019
posted
Nan, my daughter has LD but she also has asthma and has to take albuterol. I can say that its never made her worse. However, I am very glad to say that her "seasonal asthma, aka LYME" was VERY easy on her this winter.
I do feel with my brain sx, and this odd headache I have AND Ive been dizzy just about all damn day that the shot did set me back a bit. I think Im going to take massive immune boosters or something, anything.
But NO MORE SHOTS! I knew better too. I really did.
Nan, if you hammer my shoulder, I'll hammer yours. LOL
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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Do you really expect an ortho to know anything about Lyme? 
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