[tysondouglass]

How long I should wait before going back to the er. I still have more red spots appearing and the ones I had already are not getting any better. I've taken 6 doses of the antibiotic. Could I be immune to it? What else can I do?

[AnnieB3]

Tyson, Did they say anything about trying an antihistamine, just in case it's an allergic reaction?

Anything that keeps spreading is a concern. You aren't taking more doses than were prescribed, right?

How is your breathing?

Folliculitis can take a while to go away, especially since you are immune suppressed. It may take two to three days to see improvement.

If you get worse, of course, go back in!

Can you do a little test on a couple of spots (two bumps)? Just a VERY LITTLE area, okay? Can you try some Benadryl cream on a couple spots. Do NOT use it in a larger area than that. Like I've said before, you are one drug away from serious issues. If it's histamine/allergic reaction, that will help.

Try applying heat to a different small area. See what it looks like in the morning.

You just don't need any more health problems! Did they even scrape a bit off to look at it under a scope? What about doing a Tryptase blood test to see if it's elevated (looking for an allergic reaction)? Did they check a complete blood count? Erythrocyte sedimentation rate? Anything?!!!!

Try to relax if you can. If you get rapidly worse, please dial 911. I hope it will get better. You can always call the ER for their advice too.

Annie

[tysondouglass]

Originally Posted by AnnieB3

Tyson, Did they say anything about trying an antihistamine, just in case it's an allergic reaction?

Anything that keeps spreading is a concern. You aren't taking more doses than were prescribed, right?

How is your breathing?

Folliculitis can take a while to go away, especially since you are immune suppressed. It may take two to three days to see improvement.

If you get worse, of course, go back in!

Can you do a little test on a couple of spots (two bumps)? Just a VERY LITTLE area, okay? Can you try some Benadryl cream on a couple spots. Do NOT use it in a larger area than that. Like I've said before, you are one drug away from serious issues. If it's histamine/allergic reaction, that will help.

Try applying heat to a different small area. See what it looks like in the morning.

You just don't need any more health problems! Did they even scrape a bit off to look at it under a scope? What about doing a Tryptase blood test to see if it's elevated (looking for an allergic reaction)? Did they check a complete blood count? Erythrocyte sedimentation rate? Anything?!!!!

Try to relax if you can. If you get rapidly worse, please dial 911. I hope it will get better. You can always call the ER for their advice too.

Annie

Annie, thanks for your response. At the ER they did no blood tests at all, so no to all the last part. I tried and the benedryl helped with the itching but its also PAINFUL, to the touch and little hot. and very painful if i hit it.

Im supposed to go to the dermatologist for an appointment tomorrow at 3, but my aunt and uncle have appointments as well as work and need me to babysit?

I think i need to go.



I

[AnnieB3]

Painful makes me think of the herpes virus. Did you have chicken pox? Have you been around anyone who could have it? I had a rash once that itched so bad I wanted to rip my skin off. The dermatologist said it was one of the 3 dozen or so variants of the herpes virus. So maybe it could be that. Sarna lotion helps a bit. Ask the derm. about that. I think you should go in. Can't anyone else babysit?!!! Friends, family? There must be someone, like a day care, that can handle them for a couple of hours. If not, call the dermatologist and see if they can work around YOUR schedule!!!

Or maybe Teresa is right and it's dermatitis herpetiformis. Ask them to think about that too.

Ask lots of questions, if you get in. Like would an anti-viral help. They have to figure out what this is. Your MG could get worse if they can't. I hope you can get in and that they figure all this out!

Annie

[teresakoch]

Tyler, tell your Aunt and Uncle that they need to find another babysitter - MG is nothing to mess around with, especially since you are so young. They NEED to understand that!!!! Just remind them that if you get worse because you aren't getting treatment that you might not be available to babysit in the future, because you might be in the hospital, suffering an MG crisis.....

Dermatitis Herpetiformis doesn't generally hurt, but the lesions can be kind of painful once the pustule has burst. Go ahead and ask the dermatologist to test for it, while they are at it. I will tell you that if you have DH, most antibiotics won't help AT ALL. Lotions won't help get rid of the lesions, either (although it may help the itching), because the cause of the rash is an internal reaction to gluten (it isn't a true allergy, but it helps to think of it that way....). The only "cure" in that case is eliminating gluten from the diet.

If you do have DH, there is a medication (Dapsone) that is sometimes prescribed. It is a specialized antibiotic, but the side effects are similar to the symptoms of MG, and long-term use can adversely affect your red blood cells and hemoglobin. Chances are that you don't want to take this particular medication, as it will probably make your MG worse.

I know that it can seem hard to go on a GF diet, but trust me, it isn't nearly as hard as most people - doctors included - make it out to be. If you are in North Carolina, you are in luck - Whole Foods Market has their very own GF bakery in Durham, and there is an excellent Celiac Disease Center at Duke University (they even have a GF restaurant on site!). The Mellow Mushroom restaurants in Raleigh, Durham, and Burlington rolled out their GF pizza crusts in April - I was in the area visiting my Grandmother at the end of April, and was thrilled to find that their GF pizza was very yummy! Raleigh has a large GIG (Gluten Intolerance Group) chapter, and they will be more than happy to help you learn how to navigate a GF lifestyle.

If you are close to Raleigh/Durham, you might want to contact the CD Center there for recommendations for dermatologists who know how to test for DH. In any event, if you aren't already on a GF diet, I would HIGHLY recommend it. I have been on a GF diet for the past 2 years, and I just got my MG diagnosis a couple of months ago. My neurologist thinks that my being on that GF diet may have helped to make my MG symptoms much milder than they would have been otherwise.

[Jenn]

Originally Posted by tysondouglass

Annie, thanks for your response. At the ER they did no blood tests at all, so no to all the last part. I tried and the benedryl helped with the itching but its also PAINFUL, to the touch and little hot. and very painful if i hit it.

Im supposed to go to the dermatologist for an appointment tomorrow at 3, but my aunt and uncle have appointments as well as work and need me to babysit?

I think i need to go.



I

Two thoughts from your comments - first, like someone else said, you need to keep your appointment and figure out what's going on. Someone else can babysit.

The second thought was prompted by your comment that the rash is painful - did anyone consider shingles? I had shingles the summer before my freshman year in high school, and it was a red bumpy rash that was INCREDIBLY painful. Just something to consider...

[Newbie87]

i was thinking shingles too? my husband got it several months ago. It was extremely painful for him. Im sorry you are having so much trouble! hoping for the best!

[tysondouglass]

Dont you all think I WANT to go to the doctors? I had to cancel my appointment because of my aunt and uncle. The ER told me i had to make an appointment to be seen the day after. They dont have another appointment open till next week. My aunts commitment is important, yet my uncles could be avoided. My aunt has lyme disease and still is trying to get treated. Yet she moved her appointment from 11 to 3, where mine was at 4:30, for no reason so i could have gone. But oh well.

Thanks for all your thoughts everyone!

[tysondouglass]

I booked an appt. for tomorrow at 3.

Hopefully thatll work.

Can a dermatologist test for CD?

What should i have them do?

[tysondouglass]

I'm so sick. I'm tired, my stomach hurts any sleep I get doesn't help i wake up just as tired. I still have to babysit today, im so tired and my breathing is a little compromised. I'm very frustrated and want to get away.