posted
Dr Wiseass's 11 yr old daughter [has Lyme] is in the emergency room with a rash DR W thinks is a Lyme rash. Her daughter has had Lyme perhaps from birth but was just dxd several months ago.
She was given abx, but has been off abx for about 2 months.....Now suddenly this rash!!!
The doctors want to give her 50mg of prednisone for 4 days. DR W is frantic because she has not as yet been able to get hold of her LLMD.
What should she do??????
I don't think it's life threatening at this point, from what I understand.
Ideas, suggestions???
[PS....I was requested to post this for her]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
So sorry to hear this!
What's she in the ER for?
I mean, I heard you say "rash" but that's not usually the reason someone's at the ER...
Is it difficulty breathing or some anaphylactic-type thing???
Because in THAT event I would do whatever's needed to resolve the emergency!
Any other details???
Worried,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I think it's for the rash itself. It's pretty extensive....across a large portion of her body.
Oh....and it itches. The dr says it some kind of allergic reaction, but dr W is worried about the prednisone, of course.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
I have life-threatening anaphylactic reactions to certain foods, and about 6 times since getting Lyme I have needed to use the Epi-pen, be rushed to the hospital, and receive breathing treatments, and, yes, prednisone, starting w. 60 mgs over 6-7 days, tapering off.
I can tell you that I always get a Lyme "crash" after the prednisone. My symptoms get worse, I feel worse - but usually just for a few days. In some cases I've been on a tx break, not on abx. But I am not a child.
The one time I WOULD adminster prednisone, it is for an allergic reaction.
If she is vehemently opposed to any steroids -- and one could be if there is possibility it is a Lyme rash - then (altho I am not a doctor) based on my experience I would ask to have her daughter hooked up to an IV (the veins can collapse if an allergic reaction gets anaphylactic) and have both adrenaline (epinephrine) and IV anti-histamines ready.
That way they can take quick action if it's an allergic reaction and it worsens. An Epi-pen can be jabbed into her thigh, as I have done when anaphylaxis approaches.
IV antihistamines can be provided NOW. Have they been? If so, then that is an indication of how seriously they think it is allergy and I would consider the prednisone. 4 days is not that much prednisone.
Usually my allergic rashes are hives. Is this hives?
Have oral and/or IV antihistamines already been administered?
My impression is that they give me prednisone for safety in the days following the allergic reaction.
Hospitals don't want to be sued for not hitting an allergic reaction with everything they've got. Sometimes they hit a flea with a tank. The doc should be ready to handle it as she asks. But if it's anaphylaxis, hit it with everything.
Write more when you can.
Posts: 1066 | From East Coast | Registered: Dec 2000
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Just wondering.... do Lyme rashes itch?
I had a Lyme rash over much of my upper arms and trunk, but it did NOT itch. The ER could not identify it of course. I had a lowgrade fever with it.
I got another rash with a Herx and it also did not itch.
Hmmm.... thinking if, as you said in your first post, it is not life threatening, they could hold the prednisone and keep her there for observation, with IVs hooked up.
See what the antihistamines do.
If it worsens, they can take quick action.
OK, I'm not a Dr. though and can't see the rash.
I'm really wondering if they are hives?
Posts: 1066 | From East Coast | Registered: Dec 2000
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Carol in PA
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Member # 5338
posted
Several years ago I had a week of prednisone for an ear problem, and it cleared up my aches and pains and headaches while I was taking it. That was before I was diagnosed with Lyme. I had no ill effects from the prednisone.
A couple days of steroids probably won't affect the Lyme much. But several weeks might.
I hope she can get ahold of her doc. Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
If it's anaphalytic shock..........she would definitely need to go ahead with the steroids to stop it. Anaphalytic reaction is life threatening.......
Hubby has those, and they aren't pretty to see.
Yes, it might set back her Lyme treatment, sad to say.
Posts: 1366 | From Southeast | Registered: Sep 2005
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Am a nightowl tonight, waking up so many nights now w. nightmares.
So... what happened? How is she? How did it all work out?
Hope all is well.
Posts: 1066 | From East Coast | Registered: Dec 2000
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posted
Sorry I don't have more information right now. I had to hit the hay soon after posting. A mutual friend of ours was monitoring the responses, but she doesn't post here. [Hi Bev! ]
I'll call in a bit and see how things are going. Thanks for everyone's help!!!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
NOT knowing the daughter's history, and UNLESS its life-threatening,i'd not get the prednisone unless she is first on antibiotic(s), as steroids are immune syst. depressants.
take video, and still photos of the rash(-es), with date and time, and close-up and from a distance. save receipts.
the rash could be caused by some other med./supp./herb, otc, and/or prescribed, and other factors. or, a combination of meds. and the other things.
Posts: 2708 | Registered: Feb 2005
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Thank you so much for your responses, and my thanks especially to Lymetoo for posting this on my behalf and to our 'secret' mutual friend for trying to keep me in touch.
My daughter started out just fine yesterday. Then right as we sat down to dinner I noticed a couple of bumps that looked like she had been nabbed by a mean & nasty mosquito.
At the time I got up and looked to make sure I wasn't overlooking something -- examined the rest of her briefly -- much to her personal annoyance at being examined by her mother at the dinner table.
About an hour later, after I had my pajamas on, I looked at her & saw that she had gotten MORE spots and I knew we didn't have a swarm of mosquitos in the house and they were only attacking her...so I took her in the bathroom and really examined her and I JUST FREAKED OUT!
She had those huge welp things EVERYWHERE. I mean it almost looked like she was covered in boils at first because they were so raised.
She was only slightly scratching them - which her scratch response was not in porportion to the systemic level of the rash - so I couldn't figure it out.
I knew that I had seen photos of various rashes that were actually LYME rashes at the LLMD's office and I realized that those welps COULD in fact be Lyme-related.
However, to be safe I gave her a Benadryl because, at the same tiime, though, I knew that it could also be something she was allergic to - altho I couldn't think of what new thing she had eaten...but upon further questioning realized she had touched the cinnamon scented pinecones, as well as the lamp ring that was basically soaked in the cinnamon oil.
At that point, I realized I had to get her to the ER - because I wasn't about to go on to bed not knowing how extensive her allergic reaction would be.
The ER got us back fairly quickly & the doc seemed to be really confident it was an allergic rash. I told him that she has Lyme - that she was born with it - to which he gave me that look of "no-one-told-me-anything-about-congenital-Lyme-at-medical-school-I-wonder-if-this-lady-is-a-nut" look. I'm sure most of you have seen a similar look from a doc...
Meanwhile I had already put in call to our LLMD on the way to the ER and still hadn't heard squat.
The ER doc said he wanted to treat with prednisone at which point I panicked because I had this thought of: "What if he is wrong?"
For those of you unfamiliar with actually QUESTIONING a doc's diagnosis/plan of treatment....then you haven't been sick very long - either that or you need to attend the 'Dr. Wiseass School of Skepticism' (I probably spelled skepticism wrong, but it's my school so I can spell it any way I want to...)
I explained to this very young Dr. Doogie Howser that was in charge of my daughter at the ER about how steroids are bad for we Lymies and he TWICE very CALMLY and KINDLY explained he was just giving a short course to deal with the rash.
Naturally, he didn't concede that he might be wrong...but since my LLMD had yet, and STILL has yet to return my TWO phone calls to the answering service, I had to make a decision on the spot...so I had to go with it.
It was the right decision. It was only about an hour - and then the rash started to clear itself up. They gave her 50mg Prednisone plus an IV with some more Benadryl and some Pepsid. (Yes, Pepsid the stomach med - as apparently the Pepsid has an anti-histamine effect and it works synergistically with the Benadryl. Dr. Wiseass learned something at the ER....go figure.)
I know if my daughter had been in anaphylactic shock, I wouldn't have thought twice about giving her the steroids...but she was breathing just fine - I was just afraid and freaked out because I wasn't sure at that time if it was an allergic rash or a Lyme rash and I thought treating a bigass Lyme rash with steroids might be the WRONG thing to do. BUT since I haven't talked to my LLMD, I still don't know.
Luckily for ME, I have an appointment with my LLMD tomorrow. I don't know if HE'll be feeling lucky tomorrow, however.
Pray I don't p*ss him off so much that he tells me never to come back.
Thank you all for your words of wisdom and your kind thoughts & prayers.
It's nice to know I can at least depend on tihs board to 'know their stuff' and to be dependable. Thanks again to Lymetoo for posting this on my behalf....(hey, call me when you can TuTu - I'm too pooped to look for your number!)
Hugs & Kisses & Gratitude,
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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posted
You're very welcome, DW!! I'll call you when my phone stops ringing over here!
I'm so glad your daughter is OK!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi,
Oh, yes, I've gotten that "what is this person talking about look" from ER doctors. They are pretty unenlightened ab. Lyme. It is sad.
Prednisone is really a "magic" drug for almost everything (NOT Lyme, of course). It will clear up a lot of things. It gives me jittery energy at first, but then as I taper off I feel on top of the world. THEN the Lyme crash hits when I'm off of it!
Honestly, though, I would not worry ab. 4 days of it. It is not that much of it. Even taking it longer (following the anaphylaxis that requires it) never sets me back longer than 2 weeks max, and sometimes not then.
I see no reason your LLMD would be mad at you.
You did the right thing.
Shall you follow up w. an allergist to find out ab. this cinnamon thing? I'd be interested as to what your LLMD thinks of it.
Warm wishes to you both. Posts: 1066 | From East Coast | Registered: Dec 2000
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
AFTER I stopped ABX in 2001, I began getting unexplained entire body hives. Sometimes these even were on my lips which looked horrendous and scared the crap outa us b/c we were worried it would spread to my throat and close it.
I have NEVER found out WHY I started having hives AFTER treatment. I never had hives before. I never made ANY connection to any substance. The hives would come on at 5pm sharp, no matter what or if I ate, where I was, what my stress level was, etc. We tried going on trips to other places, eating simple foods, etc. NADA. A year later I was tested for every allergy under the sun and I was found to have o% allegery for all things tested.
I took benedryl until I started taking allegra 180. I took allegra for a year straight. It did the trick. I never let them give me steroids.
Just my experience. Hope you guys are feeling better today! Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Has she developed a calcium intolerance?
When my son's Mg level was so low, he developed a Ca intolerance and did get hives immediately after consuming cheese.
This is no longer a problem since he has gotten his Mg levels up somewhat. He still has to watch "overdoing" it.
Parmesan cheese is off the charts for the amt. of Ca. Watch out for that esp.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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So, did it turn out to be the cinnamon that she was reacting to?
The interesting thing about cinnamon is that it is strongly anti-parasitic in nature which made me go "hmmmmmm".
I am glad she is better.
Hugs,
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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char
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Member # 8315
posted
I missed this one til now.
So glad to hear that she is OK.
Posts: 1230 | From US | Registered: Nov 2005
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posted
I know it's over but I thought I'd say my former LLMD said no steroids for any reason. I think if I were in the hospital going blind I may take the chance and take the steroid but for a seemingly innocuous rash? No.
Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Lymetoo,
they need to wait! I didn't read everything and will go back and do that...
Me and my kids just had a virus that had no other symptoms than a rash that started on our face, went to neck and then chest and body.
It only lasted a day or two and had no other symptoms--other kids at daycare had it too...
L
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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Linda LD
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Member # 6663
posted
O.K--I totally missed the boat--I don't know how I missed this--I just am glad everyone is o.k.
In a fog I guess, Linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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Nal
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Member # 6801
posted
OMG, I am so glad your daughter is ok!!! The rash would have scared me too! I hope you give your LLMD a piece of your mind but you are right in that you do have to be careful what you say to him. How long does she have to be on the prednisone? Its funny. Some LLMDs hate steroids and avoid them at all costs. Mine? He supports using them for short term use. Who knows? Eiter way, I am so glad she is better.
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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