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 Post subject: steroids?
PostPosted: Thu Apr 10, 2008 9:17 am 
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Location: Kentucky
I'd like a little more information on steroids. My youngest had an ER visit this past winter. He had pnemonia. Of course right away thats the treatment that they wanted to give him. I said please no steroids. But how can you be sure they actually listen to you? And what can you do if they don't?

Well I thought I didn't get the steroid prescription filled that they sent home with me, but then I heard that the breathing treatment that he did at home had steroids in it. So now my wonder is... Do people EVER get over the damage done? He used to just have pain in his legs. Now he says his elbows hurt and maybe more tummy pain.


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 Post subject: Re: steroids?
PostPosted: Thu Apr 10, 2008 10:24 am 
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Gina,

Boy this is my subject, I am crusader against steroid use!

I had heard of a girl who went to ER (she had Lyme) she told them no steroids and they gave them to her anyway, she was in screaming agony. Me, I'd sue the hospital if I SPECIFICALLY told them no steroids and they did it anyway.

Then there are some people who can get injections and it doesn't seem to effect them, but it still is an immunosuppressant, so avoid it like the plague. Others and there are many with Lyme Disease, (see my answer to Lymeabean's surgery post) are absolutely destroyed by them, that is what happened to me 2 years ago and I am not well...I don't know if I ever will be because of the rapid dissemination that was caused by the steroids and viruses that were loosed...my doctor once said, "I can't even begin to imagine the pain you have experienced", he's right he couldn't imagine it. I don't know if I am permanently damaged, I just don't know, I pray I am not.

I have on all my doctor charts and pharmacies I use that I am "allergic" to all steroids...that is a little insurance you don't get them. Always, if you are getting a new prescription, make sure to ask the pharmacist if it has any steroids in it.

I hope your son feels better - if he has LD in his body, this can trigger it, if it keeps up, talk to your LLMD about him. The pain in his legs - do you know why? Stomach pain was my first symptom that something was terribly wrong after the shots and then just spread throughout every cel in my body totalling 44 symptoms when it was done. If your LLMD will, have him give you an Igenex slip to have him tested. My LLMD hands them out to anyone that asks, so I am willing to bet yours wouldn't mind running a test...I would.

Dana

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 Post subject: Re: steroids?
PostPosted: Thu Apr 10, 2008 11:35 am 
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So with Dana on this one. I avoid them like the plague. Dana and I are in a similar situation because of the bomb that steroids set off in us. Even for healthy people they are bad. I learned this after reading about them, after the fact. I had 12 shots into the facets of my spine, it paralized me....I did it 3 days before we were to drive 20 hours to florida for spring break last year, desperate for some pain relief, as it was our first BIG vacation with the kids, and I wanted to be able to enjoy it, and didn't want everyone worrying about how much pain I was in. boy did that backfire. They say never do shots near the spine to begin with, didn't know that. So it reactivated dormant viruses, which could be a big cause of a lot of my pain....on top of the lyme pain. I developed more symptoms since having them etc...

I have a lot of problems with my lungs, have had pneumonia several times in the past few years, they do have inhalers without steroids, push for those only. and abx should clear up his pneumonia. As Diana pointed out in another post, hopefully she'll be around here to tell you here too, that there are other options, as she had to do with Heth with her brain swelling.

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(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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 Post subject: Re: steroids?
PostPosted: Thu Apr 10, 2008 9:00 pm 
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Dear Gina,
I'm sorry that you are also having to carry this on your heart. It is so frustrating and yet so simple that I am constantly amazed that our physicians cannot see it. Our medical communities are locked in themselves... locked in to a lie that one size fits all; that the more you prescribe the sooner 'it' goes away; but many are not listening and are scheduled so tight, overworked - that they miss valuable contraindications that are costly in the end.

If I as a mom can see this through experience, anyone can who treats daily and continues to see ongoing suffering from the same patients can see that 'it' is not working.

Heth was on steroids for a long time w/asthma and some allergies. How difficult has this made her journey? We believe it has been a major contributor along with everything else. And once it has the opportunity to disseminate the Lyme, it takes more time to eradicate.
http://www.johndrullelymefund.org/antib ... eroids.htm

Stay hopeful. We'll encourage each other to keep pressing forward and 'stay the course'. Isn't that like the boat and Jesus and the storm?

God bless.

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 Post subject: Re: steroids?
PostPosted: Sat Apr 12, 2008 12:57 pm 
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no steriods, even tho im on a minimal amount of cortef for my adrenals. Prednisone KILLED ME. NO NO NO steriods unless, a llmd thinks you need it or your life depends on it.


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 Post subject: Re: steroids?
PostPosted: Sat Apr 12, 2008 8:08 pm 
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Brian,
When did you have Pred? Before you knew you had LD? Did it start your LD and disseminate it? Did you have oral, or shots? Wow, that is quite a few of us here now...
It is the worst thing in the world...never again will any needle go in me unless its Bicillin or b12.
Kenalog (same as pred) and pred before Kenalog - DESTROYED ME 2 years ago! Nerve pain, nerve pain, nerve pain...
Dana

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 Post subject: Re: steroids?
PostPosted: Mon Apr 14, 2008 12:07 pm 
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I had intrevenous IV pred in the hosp before I was Dx'ed, most likely killed my system and let the lyme spread! :[


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 Post subject: Re: steroids?
PostPosted: Tue Apr 15, 2008 1:11 am 
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Brian,

Oh, wow....same here (except I had shots not IV) and could feel the pain spread - I knew something was disseminating throughout my body, I just didn't know what!

Have you had any viral tests run? VERY IMPORTANT AFTER HAVING CORTICOSTEROIDS!!!! It could be hanging up the reason you aren't getting well.

I found out corticosteroids re-activate dormant viruses in our spine (we all have dormant viruses) I had 4 so high, I am surprised the viruses didn't kill me! My LLMD said he has never seen viral titers so high and was likely a huge part of my neuro pain. I have been on Valtrex for over a year and half and finally my virus titers are dropping. It took me 6 months to convince my LLMD to run these tests, I stayed on him about it because I knew it was a huge possibility, he couldn't believe how bad my viruses were when he finally ran the tests! Don't let this go if you have not been tested.

If you haven't had viral testing and have nerve pain, insist on testing. Reading the tests can be tricky. Some LLMDs think that if only the IgG is positive it means dormant or past infection and not only if the IgM is positive you are active...baloney...if you are positive on EITHER the IgG or IgM you have active viruses and must get on anti-virals, Valtrex is the most recommended.

Make sure read this link for what tests should be run, it could really help you with progressing and nerve pain. Pred and all those freakin' steroids are always responsible for loosing these viruses, check out both of these links: viewtopic.php?f=6&t=55 AND viewtopic.php?f=6&t=14

Leave me a response so I know you saw this...if not I will p/m you ...this is so important!

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Join us on Facebook and connect with other Lyme patients: http://www.facebook.com/home.php?sk=gro ... 2524317756
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Always check w/your MD regarding advice given by me or any member at this forum & any articles & info. at this site. Site disclaimer: viewtopic.php?f=6&t=16


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 Post subject: Re: steroids?
PostPosted: Sun Apr 20, 2008 9:47 am 
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Dana~
I think you are exactly right about the steroids activating viruses! Gracie came up positive after steroids (she had to have them for anaphylaxis from TPN) for some that she had previously tested negative for. Thank you for brining it up - I need to ask her LLMD why she is not on an ant-viral....he may have good reason but I do need to address it.

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