Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I know from everything I have read that prednisone is contraindicated in people with lyme, but I'm wondering what to do. I am in severe, debilitating pain from both hips. I was told I had bursitis, and possibly psoriatic arthritis. I was started on an anti inflammatory with very little results and then told to try a short course of prednisone, which I filled, but have been afraid to take. I have an upcoming appt with an LLMD, but I am in so much pain I really need some relief. My titer was equivocal and I suffered a tick bite about a month before my symptoms seemed to have begun.
Posts: 1748 | From United States | Registered: Dec 2011
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Lymeorsomething
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posted
How close is your appt?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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TF
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Member # 14183
posted
If you take that prednisone, you may regret it until the day you die. It can cause a case of lyme disease to become incurable. It is very, very sad when that happens.
You may temporarily feel better, but then your disease will escalate alarmingly.
Can you take pain medication to get you through instead?
Here is what Burrascano says about steroids for a lyme patient:
"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." (page 4) The part about steroids is in BOLD!
"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 12) Again, the sentences about steroids are in BOLD.
Lyme patients report getting pain relief from valium, klonopin, and ketamine. Cannabis (marijuana) works well, I hear. Also you can try Tramadol, Neurontin, Lyrica, and lamictal. Some say narcotic pain relievers don't work for lyme disease. Others say they help them.
I sure hope you find something that works. Steroids supress your immune system which lets the lyme disease go wild in your body. All the "police" are disabled by the steroids. It becomes a free-for-all. The lyme then gets into places in your body where medications cannot touch it. That is my understanding of why you should never take steroids except in a life-threatening situation if you have lyme.
Even then, as you read above, you must be on high dose antibiotics for 48 hours before starting the steroids.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
A year and a half ago I was told I have Psoriatic Arthritis. I was put on Prednisone. I was not very sick from Lyme at the time (I was infected with Lyme in 1997 but did not know). I was on Prednisone for 6 months, and then I was finally diagnosed with Lyme. BIG MISTAKE!!! Because of the prednisone and methotrexate I have been fighting for my life the last year and a half. I have been with my LLMD since October of 2010.
My body almost completely shut down. I have been bedbound for most of the last year and a half, and if I was not in bed unable to move, I have been a prisoner in my house. I am only 36, and am very, very sick. Like I said, my Lyme symptoms were not too bad. Most of them I did not even realize were "symptoms". I just thought everyone experienced them. I now have almost all of the Lyme, Babs, and Bart symptoms. I am on IV antibiotics. I have already spent well over $10,000 on my medical care, I just am afraid to admit to myself how much I have really spent. My LLMD said I am one of the sickest patients he has ever seen.
DO NOT TAKE PREDNISONE, or any other drugs the rheumatologist wants to give you for autoimmune diseases. You might not ever get healthy again. Had I not taken the prednisone, I am confident that I would be well on my way to living a symptom free life. Now I am facing the reality that I probably won't ever be symptom free. I am treating very aggressively, and fighting to get there, but it might not happen.
Do not believe the rheumatologists when they try to scare you into taking these drugs by saying you will have irreversible joint damage if you don't take prednisone. My joint problems were in my feet, and were agonizingly painful. I used a cane and a walker, and almost got a wheelchair. My LLMD even said that he did not know if I would ever walk again unassisted. I have to tell you that I put my cane away in May, and have not used it since! The pain, swelling, and bruising in my feet is 100% gone!
I agree with TF, there are many ways to get pain relief, but prednisone will not do it. My rheumatologist kept raising my dosage until I was at 70mg a day of prednisone, and it did not change my pain level in the slightest. Narcotics help a little. I was prescribed a few different narcotics (not at the same time) and each one seemed to help bring the levels down enough to be bearable. Ultimately, the only thing that will end the pain is to get rid of the Lyme. Prednisone is like putting gasoline on a fire when it comes to Lyme. It was the single biggest mistake of my life. I will pay the price for it for the rest of my life. I only wish someone had told me this before I took the steroids.
One thing that helped me was Tiger Balm the "Muscle Rub". It comes in a tube. It is minor, but it might get you through. Feel free to PM me if you have any specific questions. Good luck.. and hold out until you get in with the LLMD. Please, at least talk with them before you take any of the prednisone.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
My hip pain resolved with treatment. It is a common symptom of Lyme and co-infections, especially Babesia. Skip the steroids, please. Good luck with your appointment!
posted
Agree -- only take Prednisone if it is life or death.
Searching4truth -- crying as I read your post. I, too, was prescribed it for one year. 80 mg., weened down to .5mg at the end of a year. I regret the day I went to the rheum. who prescribed it after a "negative" lyme test.
Prednisone destroyed my life. My prayers for all of you.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ditto to TF's "If you take that prednisone, you may regret it until the day you die."
Prednisone nearly cost me my life in about six different ways, at various times over a couple years - before I was diagnosed with lyme and other tick-borne infections.
In addition to the near death experiences, it clearly ruined so much about my body for a very long time.
I will spare you the specific horrific accounts but please, please trust us on this matter.
Prednisone, at this time in this context for you could be devastating in ways you cannot even imagine. It could be both immediately devastating - and long term.
There are better options, really. Links to follow.
. . . We have been traditionally 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. . . .
. . . 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 important to read the entire article, link above.] -
[ 01-11-2012, 05:55 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
I am in the position where I may lose the vision in my left eye due to inflammation of the optic nerve. If my vision gets worse, I have to take steroid pills.
I asked my LLMD, and TF, you know who she is, and she said to save the eye if I have to take the steroids but to make sure I take my abx while on them.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
faithful,
Sorry to hear of this. Glad you have a LLMD who knows how to guide you.
For all readers, to be clear, while steroids may be needed in emergency or as the very last effort, ALONG WITH antibiotics prescribed and guided by a LLMD, and that can have good effects to save a life or vision -
that is a whole different matter than for someone taking prednisone for UNTREATED lyme (or other stealth infection). That can kill.
In addition to addressing infection. In addition to stealth infections, many of the CAUSES of inflammation include: heavy metals, toxicities . . .
ANTIOXIDANTS & LIVER SUPPORT are major players of defense against inflammation anywhere in the body, including the eyes.
This includes Fish Oil, Magnesium, Astaxanthin, and so many other marvelous things that most MDs know nothing about.
This is a fabulous eye doctor. I've been following his work for years, since getting his book "The Eye Care Revolution": ---------
Most Powerful Nutrient Ever Discovered for Eye Health
- by Joseph Mercola, D.C. - | November 23 2010
Excerpt:
. . . This carotenoid is called astaxanthin. Astaxanthin is produced by the microalgae Haematoccous pluvialis when its water supply dries up, forcing it to protect itself from ultraviolet radiation.
Astaxanthin is leaps and bounds more powerful than beta-carotene, alpha-tocopherol, lycopene and lutein; other members of its chemical family.
Astaxanthin exhibits VERY STRONG free radical scavenging activity, and protects your cells, organs and body tissues from oxidative damage. . . .
Terry Wahls, M.D. official website -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I haven't had time to read all the responses above, but just want to say, don't take the prednisone (it's not worth the risk, and the relief is so temporary, you will be seriously disappointed).
I've done the prednisone shots (I didn't know I had lyme--big fat mistake).
I suffered with bursitis for so many years. I finally found a chiropractor who just massaged the pain out (it was really painful, but the relief in 10 minutes was worth every ounce of pain). I see her whenever it acts up, which is less and less now (helps every time).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I don't know. I hope she didn't go there. Ellen, I live in MA too. If you want my chiro's number, send me a private message.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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lymeboy
Unregistered
posted
I have seen nothing but bad things from Prednisone, Lyme patient or not. In fact, I do not know one person that has been helped by a Rheumatologist...
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posted
In my twelve year battle with Lyme, I have been given prednisone twice, the first time before Lyme was diagnosed, sent it into temporary remission, only to come back with a vengeance. The second time was when an inadequate lyme treatment left me unable to function. Which again made me feel better, only to have the Lyme return permanently --am now working with a good Lyme doctor, but realize it may take years.
Posts: 20 | From Minnesota | Registered: Apr 2009
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I'm still here. Unfortunately still suffering with horrible bursitis symptoms. I saw an LLMD and have been on my treatment for a week. Really no change in symptoms. Wondering if this is actually lyme, or something else entirely. I don't want to blaqme every symptom on lyme as that could be not only dangerous, but could force you to withstand months of suffering with something that may be easily correctable with treatment whether it be with prednisone or something else.
Posts: 1748 | From United States | Registered: Dec 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say you don't know if this is due to the lyme or something else entirely.
Well, even if something else, since you have lyme, steroids are the wrong way to go unless in a life threatening emergency and a LLMD helps guide emergency use of steroids. Emergencies with vision or breathing would fall into the same category.
You could be risking your life by opting for prednisone. Oh, it may not kill you but if you have a chronic stealth infection like lyme (or another kind), your life may never be right again from prednisone use.
"Easily correctable" can be a terrible trap. There are so many other approaches for pain relief and tissue repair.
You say: ". . . saw an LLMD and have been on my treatment for a week. Really no change in symptoms. . .. "
Did that LLMD tell you this would be better in a week's time? This could take a while to resolve. We just have to do the best we can along the way and it should feel somewhat better within a couple weeks.
Still, so much more that could be helpful along with lyme treatment: SOTA LIGHTWORKS; Gentle myofascial release; Magnesium; Fish oil; Feldenkrais; Corydalis. . . .
I hope your LLMD gave you some suggestions for pain relief along the way. Keep in touch if you need some specific suggestions for your shoulder. I've had many such injuries and I know it can be very painful.
But, please forget about steroids. Please. We don't want anyone else to suffer the severe consequences that we have. I cannot tell you the sorrow prednisone brought to my life before I knew lyme was the cause of symptoms I was taking that for.
Lyme Disease as an Underlying Cause of Supraspinatus Tendinopathy in an Overhead Athlete. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Honestly, it probably sounds like snake oil if you haven't heard of this type of therapy. It's very common in European countries.
Google it and get a lot more. It sounds way too simple until you experience the benefit.
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
quote:Originally posted by Keebler: - You say you don't know if this is due to the lyme or something else entirely.
Well, even if something else, since you have lyme, steroids are the wrong way to go unless in a life threatening emergency and a LLMD helps guide emergency use of steroids. Emergencies with vision or breathing would fall into the same category.
You could be risking your life by opting for prednisone. Oh, it may not kill you but if you have a chronic stealth infection like lyme (or another kind), your life may never be right again from prednisone use.
"Easily correctable" can be a terrible trap. There are so many other approaches for pain relief and tissue repair.
You say: ". . . saw an LLMD and have been on my treatment for a week. Really no change in symptoms. . .. "
Did that LLMD tell you this would be better in a week's time? This could take a while to resolve. We just have to do the best we can along the way and it should feel somewhat better within a couple weeks.
Still, so much more that could be helpful along with lyme treatment: SOTA LIGHTWORKS; Gentle myofascial release; Magnesium; Fish oil; Feldenkrais; Corydalis. . . .
I hope your LLMD gave you some suggestions for pain relief along the way. Keep in touch if you need some specific suggestions for your shoulder. I've had many such injuries and I know it can be very painful.
But, please forget about steroids. Please. We don't want anyone else to suffer the severe consequences that we have. I cannot tell you the sorrow prednisone brought to my life before I knew lyme was the cause of symptoms I was taking that for.
I really don't know for sure I even have lyme. Also, its not my shoulder its both hips, both buttocks, terrible pain, hurts to walk, sit, pretty much do anything. Yes, I am taking supplements, magnesium, b12.
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