posted
Christina, I also am seeing a pain mgmt doc (Lyme friendly, referred by my LLMD) who wants to do an intralaminar steroid injection.
I have obvious concerns because of Dr. B's guidelines, stating that steroids are a no no.
I cannot take narcotic painkillers, because they just about kill me in the process.
I had a neck MRI (about to ask for a head MRI as well) and found that I have bulging discs at C4-C6, which is bizarre bec I've never had any trauma to my body. So this doc is also thinking it's degnerative disk disease possibly from Lyme.
It's all a bit much for me to process, but I'm thinking if I have a chance to manage the pain, I'll try it.
Glad to hear that you're doing better. I'm still plugging along with the tx, been over 2.5 yrs now.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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posted
Boy, that's not good. From things I've read here over the past 9+ years, the steroid INJECTIONS are the worst for triggering Lyme.
I guess it's the dosage that is so big and thus dangerous.
I feel for you, because I have disc problems in my neck and in my lower back. One day, something will have to be done. I'm wondering if going straight to surgery would be better??
Don't the epidurals have a "short" success rate? Like .. helps for a few months and then you're back to square one?
PS.. I take Xango/mangosteen and Jarrow glucosamine/chondroitin/MSM for inflammation.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
You're right, Lymetoo, the epidural effect is only temporary so you gotta go back every so often. Seems like putting a bandaid on a gaping wound.
I truly believe my pain is neuropathic in nature so I still don't get the reason for it. I don't think it'll help the facial, head, and neck pain.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I had 3 sets of 2 epidural blocks in my neck about 10 months ago. I was assure dthat it was a small amount of steroids and would stay localized to the area injected. I did fine and no lyme side effects.
I mean this with no disprespect to any other members or doctors, but to tell people absolutely never steroids is irresponsible. Some times you need them and sometimes they help. My neck has never been better, not to say its pain free. the only thing that has helped my pain in the past is steroids.
I believe that steroids saved my life at one point.
SO I think with an educated decision and a good doctor that steroids can be used properly.
I am not a doctor just a lyme patient who has used steroids sucessfully.
I hav ebeen off abx 8 months, but will likely go back on soon.
Posts: 3905 | From USA | Registered: May 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
the epidurals are supposed to help a year so I was told and I think mine are just starting to wear off. 10 months now.
as far as mangosteen xango and inflammation-
I had crp levels drawn before starting it and drank it for a few months and it didnt help. My crp was drawn after being on it and it actually went up. SO I stopped it. IT did taste good though.
crp is a measure of inflammation.
I am not trying to start a fight and argument and i am quite aware of doc b's guidlines. but when you have that much pain you want to die, steroids are an option.
tumeric is supposed to be a good supplement for inflammtion and pain. I just started it so I have no input yet.
Posts: 3905 | From USA | Registered: May 2007
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posted
Jennifer, I myself have also had no injury done to my neck at any time. And have no idea why it is so messed up.
The pain is unbearable at times. It starts at the base of my neck and goes up I also have spasms there to.
The dr said surgery would be a last resort after all else is tried because the area and it being part of the central nervous system.
The steroids is why I said I had to do research and did not schedule it. I have been on steroids and lyme completly took over my body, not even knowing I had lyme at the time so of course I'm scared.
But then there is this unbearable pain. Im at a loss of what to do.
Ive tried therapy, pathes, rubs, tens unit, im about at the last resort.
He also said the damage to your neck is different from your back as the back prob wont get worse if you dont treat the damage in neck it will cause more nerve damage.
-------------------- Christina Posts: 102 | From Lacey Washington | Registered: Jul 2008
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posted
What about trying acupuncture? I don't have any recent experience with it, but maybe it would be worth looking at before trying more extreme allopathic measures.
Good luck to you, Nutmeg
Posts: 386 | From WA state | Registered: May 2005
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posted
Hey, merry.. I'm on a steroid asthma inhaler... so yes, I know they are sometimes necessary. When it comes to life and death you have to take them.
As for mangosteen, you have to get enough of it. It has been medically proven that it lowers CRP. Mine is below 1.. forgot the actual number.
anyway... I'm not here to argue either.
I hope everyone in pain gets relief from SOMETHING!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I think I feel more comfortable about it with this particular pain mgmt group because they do understand the effects of chronic Lyme. If that weren't the case, I'd probably just walk away.
Christina, I too have tried everything and seen just about every type of specialist out there; none of them have beem able to identify the source of or resolve the pain yet.
I have so much inflammation that many days the area of my face around my mouth and below my chin is swollen and I look like a freak.
I'm at the point where if something isn't done about the pain, I'm not gonna last much longer. Everyone has their breaking point.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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posted
I think we all know that we are all just looking out for each other's best interests. That's what's so great about this site, because not all of us get that from other areas in our lives.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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