randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
went to doc and i have more x-rays tomorrow. (he should have done this when i first went to him).
now he is talking about sending me out to have some kind of joint injections with steroids in my neck.
i said, uh no, lyme. and he got sort of angry and said "you don't have lyme, steroids are not going to kill you and it's the only way to reduce this inflammation."
i'm getting pretty tired of hearing this every time i go to him about something.
so has anyone had any joint injections and do they also contain steroids and would you have it done?
i think i'm going to cop out...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Randi,
You were correct to remind him of the lyme. He was very wrong in his response.
I'm going out on a limb here and just reacting like in conversation.
Uh . . . No, I'd say. Absolutely not. As painful as that may be, unless it is life-threatening, I'd run far away from this guy.
What would your LLMD say? All the experts would say "no" unless life-threatening or to save vision or ears and then, with very specific abx measures.
If this (GP/PCP ?) keeps saying that you don't have lyme, you are being treated by an LLMD for lyme . . . why do you keep going back to the doctor who not only knows nothing about lyme but discounts it ? ?
An injection of steroids can create havoc - sheer havoc - in a patient with borrelia infection.
Yes, before I knew better, I had steroid injections in wrists, elbows, feet . . . each time I got much worse for a long time. Even after I knew I had lyme and that steroids were contraindicated, the foot doctor assured me that the medicine would not travel but remain in my foot joint.
I still had a terrible relapse. Of course, I've never had a LLMD and never had the abx protection or it may have been okay. And that foot did get better. But, it's near the bone I recently broke. And that bone not only broke it was pulverized.
Steroids can turn bone to mush, so to speak. There may be safer ways to achieve relief.
Acupuncture? Cranial-sacral? Yoga? Massage?
Curcumin and other anti-inflammatories?
Traction? You can be instructed in how to do this at home with equipment that you hang on the back of a door.
And is your lyme treatment working? When lyme finally is conquered, inflammation should go down. Until then, lyme and inflammation go hand in hand.
Again, your LLMD really needs to be included in this discussion.
From: Lyme Disease 1991: Patient/Physician Perspectives from the U.S. and Canada - Lora Mermin, editor
by John Drulle, M.
Excerpt:
. . .
"Steroid Disaster" is a term coined by the pioneer of Lyme Treatment, Dr. Burrascano (see link at bottom of page).
Corticosteroids are immune suppressants, the last thing a Lyme patient needs is to lower immunity.
Can you imagine, your body trying hard to fight off the spirochete bacteria and suddenly and immunosuppressants is introduced, "freezing" your immune system, rendering it unable to battle, giving great advantage now to the Lyme bacteria to spread and go wherever it wants .
Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done.
Many Lyme patients (such as myself) triggered LD with cortisone shots, pills, inhalers, etc. I can tell you, it is a nightmare I wouldn't wish on my worst enemy.
It is imperative to NEVER take corticosteroid for pain if you know you have a bacterial infection.
Some bacterial infections are so severe that a shot of cortisone could kill you, although that would be unlikely with Lyme, but rule of thumb, bacterial infections and immunosuppressants do not mix!
. . .
Dr. Burrascano makes it clear in his treatment guidelines that steroid treatment is detrimental, these are excerpts from his guidelines:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressants medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressants medications are absolutely contraindicated in Lyme. This also includes intra-articular steroids."
An easy explanation. Your immune system are the "soldiers" of your body constantly standing by to attack any foreign invader.
When an immunosuppressant is used, it is like killing off or knocking out most of your "soldiers", now your body is open to all foreign invasion and while your immune system is knocked out, those invaders can go anywhere, your heart, liver, brain - everywhere.
PLEASE NEVER EVER USE STEROIDS WITH LYME!
============================
This advice continues in the most recent guideline set by Dr. B:
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids.
. . . .
From page 12:
Excerpt:
. . .
More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
. . . .
Page 20:
. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example).
posted
I completely fail to see point of corticosteroids. I never ever read that they stopped progression of anything , just relieved the symptoms. The only point to use them seems with life threatening allergic or autoimmune reactions
Posts: 856 | From MA | Registered: Jul 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
yeah, this is what i thought. just wanted to recheck things.
i'm going to look for a new primary care. we seem to have reached an impasse in my treatment.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
It's a temporary fix .. and one that could set you back "forever."
I would run.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
i had 2 shots given in my mid back almost 11 yrs. ago; 2 days before i left work for good and 2 wks. later.
my back didn't get to rest; i had stored 22 boxes of my all season decorations including to 2 xmas trees, and paper work galore on fibro, cfs, breast cancer, etc.
i didn't know i had CHRONIC LYME 30 yrs. at that time. i know they did NOT HELP ME....
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posted
I did this....it did NOT help my pain in my neck whatsoever, but I don't have structural pain when I move it. I have all of the time nerve pain. Burning skin, shooting type pains, etc. It didn't help me and also made my twitching come back full force when it was the ONLY thing that went away with treatment.
I almost felt obligated to do it to prove that my pain was serious. I didn't want them to look at me as a pain pill seeker who wasn't willing to try something to be a longer fix than pain pills. Also did it to prove to my family that I was serious about my pain. All it did was made me worse.
-------------------- ---Beautiful Disaster--- IgeneX WB: IgM: 18+, 31+, 41+, 58+, IgG: 31++, 39 IND, 41++, 31kda Epitope Test: Positive Labcorp: IgM: 23+, 41+ No LLMD due to money since Sept 2008. Was on Doxy, I.V. Rocephin (30 days), Flagyl. Also dx with Bartonella. Posts: 139 | From United States, East Coast-ish | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's sad that this happens so often.
We should never feel obligated or obliged to accept bad treatment by any one who is ignorant to all the complex processes involved with our diagnoses.
We should not have to suffer from dangerous treatments to prove anything to anyone. Education matters all through life. Knowledge is power.
If anything, sharing that knowledge (and professional literature) might be what can help stop this cycle. If people don't listen or don't want to learn we have to stop giving them power to enforce decisions that are detrimental and have long-lasting effects. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I have RA and in 2008 what I thought was a bad flare came up and my achillies tendons sweeled and my lower back sweeled and very painful could not walk so Dr. did all these test said I had a torn achillies was in a boot cast for about 8 weeks
meanwhile my back got worse and worse so did mri and found torn disc so he sent me to have injections in lower back I did have relief in the beginning but when the numbness stuff wore off it was worse thatever.
I also finally gave in and let him inject my achillies tendon so I could at least get some relief still struggled after that.
So finally switched to Remicade from Orencia Biologics and still nothing changed just was getting worse.
Finally he started running all these test to come back with positive Lyme of course rhuemy acted like it was no big deal and put me on minocycline for 3 weeks checked me again the next week and still was + so now I am on rocephin IV's at home.
So yes I believe that Steroids and the meds I ws getting for my RA treatments sent the lyme into hyperspace... so very sick and bad bad things started happening.
I would not take any steroids or injections or my Ra teatments right now my focus is on getting through this lyme.
-------------------- Laura Barrett Posts: 11 | From Millers Creek, North Carolina | Registered: Aug 2009
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posted
Any injection to relieve neck pain sounds amazing to me right now!!! Ha Ha.
I hope yours improves soon. Take care!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I have bulging disks in my neck and the dr did talk me into taking a weeks worth of steroids. He said shortterm wouldn't hurt even after I told him I had lyme.
It was a mistake for me. I had Lyme for 18 years and was suffering from all neuro symptoms. Now after the steroids, I now have the arthitis side of lyme too that I didn't have before. I can't prove it was from the steroids, but that's all that was new.
Now my Drs all are saying to do the steroid injections but I refuse. They get mad at me too and have the same reaction yours did. Soem say I don't have lyme and some say I do, but most call it "my questionable diagnosis". That's what they all write in my charts.
Funny how they call it questionable, but none ar hopping on the bandwagon to find what the "real" cause of my symptoms are.
Hope you get some relief. On my bad neck days I have learned, I pretty much jsut have to lay down all day. And I know how hard that is being an active almost hyper person, but it's something I'm trying to learn to do.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
lisa, thanks so much. i'm in the same boat.
mike is gone this weekend and so i'm going to lay down for three days!!
i have switched pillows to a temperpedic type, removed the old mattress foam topper which had a huge ridge in the middle, and was supper soft.
i got the x-rays done this morning.
i'll just take the flexeril and chill out.
the neck pain is getting very bad. i'm half tempted to just make an appt with a neck specialist and bypass my primary. but i'll wait a while and see if it improves at all.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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I have been on the evil prednasone for 4 weeks. I had a severe drop in platelet count and was at risk for bleeding out- it was an autoimmune thing and the pred is stopping that.
I am TERRIFIED of relapse. I am off all lyme meds (was on ceftin/zithro combo that may have caused blood disorder) and now I'm on nothing. I am rifing once per week.
So far, the worst part of this is the effects of prednisone: bloating, irritability, NO SLEEP.
THank you for posting the old steroids threads.
My LLMD also told me that clinical studies have shown that patients who have EVER taken steroids in their life are much harder to treat for chronic lyme.
I am so scared.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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