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Ashleybritton
11-22-2012, 07:46 PM
One of my mom's friends gave her the idea that we shouldn't just rely on local physicians, but we should seek out the advice of an expert. After some research that led us to Dr. Petri at Johns Hopkins. I just got back from my trip and I can't begin to tell you how worth it the visit was. They have changed my medication routine, did more lab work than I could have ever imagined possible, and will be managing my care through my local rheumatologist. So all medication changes, new findings, etc. will go through Dr. Petri first.

A few little things that you guys probably already know, but I didn't so I thought I would pass it along.

No garlic, not even a teeny tiny bit
Use Neutragena SPF 100 with helioplex (it's the only one that protects against UVA and UVB)
No echinacea or alph alpha sprouts.

The garlic was a surprise to me.

Also, who knows how this will pan out, but Dr. Petri is working on a cure, but thinks it's about 20-25 years out. I'm not sure how one can confidently make a prediction so far out, but I like having that little bit of hope.

steve.b
11-22-2012, 09:30 PM
it is good when we find a doctor we can trust....and like.

i am glad you found one.

tgal
11-23-2012, 09:14 AM
So glad you found a good doctor. I did know about all of that although the garlic thing is a relatively new finding and one I don't like at all! I read about it (and posted I believe) a few months back but wasn't sure if it was standard practice yet. I guess you just answered that question. There are very few foods that are medically proven to set off our disease (sprouts was the only one) so I am always skeptical about new ones. I had seen the research on garlic I was just hoping it was wrong. LoLol

There is a "sticky" here about photosensetivity that all new people need to read. A high percentage of Lupus patients have trouble with the sun and ultraviolet lighting. Cover yourself inside and outside. Many of you will notice a huge difference.

thanks for sharing!

Derrie
11-23-2012, 10:01 AM
Regarding garlic-- is that something that should be avoided by all people with autoimmune disease-- not just people with lupus? I love garlic.

rob
11-23-2012, 10:12 AM
There is a local Italian restaurant owner here who has a licence plate frame that says- Give me Garlic, or Give me Death.

I tend to agree with that sentiment! I know there have been new reports about how people with SLE should avoid garlic, but unless I end up in the ER after eating my shrimp scampi or garlic bread, I'm not giving it up. No way.

Ashleybritton
11-23-2012, 05:32 PM
I know. The garlic thing is proving to be a challenge! It's everywhere. I'm willing to make the sacrifice though. I'm just going to make big batches of spaghetti sauce and salsa to freeze ahead of time. They were adamant that I not have even the tiniest amount. Derrie, I'm not sure about that, but I have a follow-up phone call soon and will ask then.

finally_thin
11-23-2012, 07:52 PM
I have also read that sulpher veggies-ie onion, leeks and shallots should be avoided. I am at the point I told my husband if I put food in my mouth and it tastes good I should spit it out. lol. Lots of changes in our household, onion and garlic went in everything but morning cereal. Not worth the pain.

Derrie
11-23-2012, 08:05 PM
Oh, Ashley, thanks for asking them that! Means a lot to me that you'd do that.

And, yeah, Rob, one of my favorite kinds of food is Indian food-- heavy on the garlic. And Thai. And Italian. And Mexican... Seems like everything I love is full of garlic.

rob
11-23-2012, 08:47 PM
I have also read that sulpher veggies-ie onion, leeks and shallots should be avoided. I am at the point I told my husband if I put food in my mouth and it tastes good I should spit it out. lol. Lots of changes in our household, onion and garlic went in everything but morning cereal. Not worth the pain.

Hi Finally_thin,

There is some understandable confusion out there in regards to the vegetables you mention having to do with the similarity of the words Sulfur, and Sulfa.

I wrote about it a few months ago in post#3 of this thread-

http://forum.wehavelupus.com/showthread.php?11719-Green-onions-good-for-us-or-not

Hope this helps,

Rob

PS-Welcome to WHL!

magistramarla
11-23-2012, 09:03 PM
I'm with Rob and a few others here - I don't think that I could cook without garlic.
So far, it doesn't seem to be bothering me - that's my story and I'm sticking to it.
Hugs,
Marla

jmail
11-26-2012, 05:10 PM
I've read where we're supposed to avoid asparagus also, but like chocolate, cheese and gluten, I can't resist. 'Sides, who are we to believe?



... A high percentage of Lupus patients have trouble with the sun and ultraviolet lighting. Cover yourself inside and outside. Many of you will notice a huge difference...

"Amen" to that, sister. I'm trying not to be so non-chalant about it anymore. I got red as a beet the other day, and couldn't figure it out... Went shopping with the wife at a couple of stores. At least one of them had to have had unshielded flourescents, but I didn't pay attention as I went in... My bad, no sun screen, and not paying attention.

tgal
11-26-2012, 07:25 PM
I've read where we're supposed to avoid asparagus also, but like chocolate, cheese and gluten, I can't resist. 'Sides, who are we to believe?




"Amen" to that, sister. I'm trying not to be so non-chalant about it anymore. I got red as a beet the other day, and couldn't figure it out... Went shopping with the wife at a couple of stores. At least one of them had to have had unshielded flourescents, but I didn't pay attention as I went in... My bad, no sun screen, and not paying attention.

The only two things that the Lupus foundation and Mayo say are garlic and alpha sprouts. The rest are just opinions and nothing proven.


Our school football team is in the state playoffs and we always play at night, except the past week. We played at 2:30 on Sat. I am still paying for it. Major flare here. Even doing all the right things the Texas sun got to me. I know better but I can't let our boys, or my daughter (who is the mascot) down by not going. Sometimes you just have to weigh it out...

ritzbit2
11-27-2012, 12:49 PM
Give me Garlic, or Give me Death.



LOL I have to agree! I hadn't heard about the Garlic until I read this post, but I don't think I'll be taking that out of my diet anytime soon. I think approximately 100% of what I eat has garlic in it, and it wouldn't be the same without it! lol