Urgent question re: antibiotic

[Gingergrrl]

I have not read any posts in about 2-3 days and very behind but am hoping someone will have some ideas for me. I have not done well since my last IVIG (too much to even explain) and now have a staph infection/cyst behind my ear. I saw my dermatologist this morning b/c I was in so much pain and she really wanted to give me an antibiotic but I am allergic to literally all of them.

I cannot take penicillin, cephalosporins, fluoroquinolones, z-pack etc, nor can I take NSAIDS which she also recommended. Her final thought was doxycycline (which I have never tried and do not know if I would be allergic) but without speaking to my mast cell doctor, she was too uncomfortable to try it as was I. So instead she prescribed an ointment called "Mupirocin" and I am to use it 4x/day and if not better by Monday, she wants to try antibiotic.

I was wondering for those who've had experience with Doxycycline, is it highly allergic? She does not want the staph infection to spread which of course neither do I but she thought the topical ointment might be enough to reverse it. If it gets worse over weekend before I can talk to her on Mon, I am to go to the ER.

I e-mailed the nurse at my MCAS doctor's office and just saw him yesterday but this developed last night. It is such bad timing. I am wondering if it is related to the IVIG or to the steroids that I use as a pre & post med for IVIG? My dermatologist thought this was possible (both cases) or possible that it was not related and would have occurred anyway (b/c she has seen this in patients without IVIG, without MCAS, etc).

So now I am having horrible immune responses (other ones I will leave out of this post) PLUS I am no longer tolerating food and have lost seven lbs in the last week. I had gained over 20 lbs so this is not a big deal (and the only positive part LOL).

Thanks in advance for any feedback and apologies if I am slow to reply.

 

[jeff_w]

I saw my dermatologist this morning b/c I was in so much pain and she really wanted to give me an antibiotic but I am allergic to literally all of them.

I cannot take penicillin, cephalosporins, fluoroquinolones, z-pack etc, nor can I take NSAIDS which she also recommended.

I bolded your text. Same here, literally, word-for-word. So, my main CFS/ME/LLMD prescribed me Clarithromycin (for a recent dental issue). That is the ONLY antibiotic I have tolerated, after trying amoxicillin and a cephalosporin and having MCAS reactions.

Clarithromycin is a macrolide. I don't know if it's the appropriate antibiotic for your situation, or if you will tolerate it as I am. But, perhaps it's worth trying.

I started out on 1/50th of a pill of Clarithromycin. When I did fine on that after two hours, I took 1/10th of the pill. Etc. I've now been on the full dose of this med for two weeks, and I'm doing well.

Good luck and please keep us posted.

 

[Gingergrrl]

Jeff, got your text and will reply there as soon as I can and thank you so much.

 

[TigerLilea]

I was wondering for those who've had experience with Doxycycline, is it highly allergic?

That's a question that we can't answer for you. What causes an allergy in one person, won't affect thousands of others. And even if a person has used a specific antibiotic several times with no problems is no guarantee that they won't have a reaction the next time they use it.

 

[Jennifer J]

I have not read any posts in about 2-3 days and very behind but am hoping someone will have some ideas for me. I have not done well since my last IVIG (too much to even explain) and now have a staph infection/cyst behind my ear. I saw my dermatologist this morning b/c I was in so much pain and she really wanted to give me an antibiotic but I am allergic to literally all of them.

I cannot take penicillin, cephalosporins, fluoroquinolones, z-pack etc, nor can I take NSAIDS which she also recommended. Her final thought was doxycycline (which I have never tried and do not know if I would be allergic) but without speaking to my mast cell doctor, she was too uncomfortable to try it as was I. So instead she prescribed an ointment called "Mupirocin" and I am to use it 4x/day and if not better by Monday, she wants to try antibiotic.

@Gingergrrl, ohh, so sorry to hear this. I went through this same thing 2 1/2 weeks ago. A red bump on the ear spread all over the ear, allergic to antibiotics...

I was wondering for those who've had experience with Doxycycline, is it highly allergic? She does not want the staph infection to spread which of course neither do I but she thought the topical ointment might be enough to reverse it. If it gets worse over weekend before I can talk to her on Mon, I am to go to the ER.

I don't know if Doxycycline is highly allergic. I'm allergic to it but you may be alright with it.

The doctor I saw at Urgent Care didn't want to do Mupricon creme cause how the infection had spread, but we had no antibiotics I could take, so I was prescribed Mupricon creme 3x a day. I had the same instructions as you, if it got worst...

I went out and bought some garlic to eat and make into tea to help cause of any antibiotic properties it has. Not sure how much it did or didn't.

Thankfully the Mupricon creme within a day had it subsiding. I'm still on the creme now and the infection is almost completely gone. I hope this will be the same for you, and that you will also find an antibiotic that can work.

I'm going to check into seeing if I can be desensitized to antibiotics. Not sure if it's possible. I think I read there's a rapid way to do this if needed. Not sure if this is something that can be done and will work with your MCAS.

My heart and thoughts are with you. I hope this turns around quickly for you.

 

[Strawberry]

I have been on doxycycline and clarithromyacin for over two months and haven't had MCAS reactions, but I have only reacted horribly to one antibiotic. I'm not allergic to as many things as you are. Its very possible that I have reacted mildly to some over the years, but with completely out of control allergies for years, its impossible to know.

It might be good to try compounded, as doxy is light orange in color. You don't need the infection getting worse!

@jeff_w Good to see you back!

 

[Mary]

Hi @Gingergrrl - Sorry to hear this! Several years ago Dr. Taylor recommended colloidal silver to apply topically if needed - this was when skin MRSA infections were a big scare. I had used colloidal silver in the past for a recalcitrant strep throat infection, and it was effective.

Here are a couple of studies, one involving sheep (I know!), and the other not, about the topical use of CS for staph infections, FWIW:

http://www.ncbi.nlm.nih.gov/pubmed/25643830
http://www.ncbi.nlm.nih.gov/pubmed/24431107

I hope you feel better soon --

 

[jeff_w]

@jeff_w Good to see you back!

Thanks, @Strawberry !

 

[Gingergrrl]

Thank you so much to everyone and apologize that I cannot reply right now but will explain more later when I am able.

 

[AndyPandy]

Thinking of you @Gingergrrl ❤️

 

[AndyPandy]

I think I have read somewhere that tea tree oil applied topically has been used successfully on staph @Gingergrrl. Think this was in a hospital environment. I use it for lots of skin infections etc.

 

[Jennifer J]

I think I have read somewhere that tea tree oil applied topically has been used successfully on staph @Gingergrrl. Think this was in a hospital environment. I use it for lots of skin infections etc.

I'm glad that works for you, @AndyPandy. Be careful though @Gingergrrl if trying it. I'm extremely allergic to tea tree oil. A little sniff of it affects me for hours deep tissue facial swelling and asthma. That's scary for me if it's being used in hospitals.

I know it works and is used by a lot of people for a lot of things, but also have read, and experienced it causing breathing problems.

Thank you so much to everyone and apologize that I cannot reply right now but will explain more later when I am able.

No apologies necessary. Hope you are alright. We're all thinking of you and pulling for you.

 

[Gingergrrl]

The doctor I saw at Urgent Care didn't want to do Mupricon creme cause how the infection had spread, but we had no antibiotics I could take, so I was prescribed Mupricon creme 3x a day. I had the same instructions as you, if it got worst...

Sorry for my delayed reply again to everyone. I remember you mentioning it to me and how weird that I am now in the exact scenario. Had you taken steroids that lowered your immunity prior to the staph infection on your ear? So far it is like a cyst and it has not spread. I am to use it 4x/day until Mon and if not better she wants me to try an oral antibiotic. Was the Mupiricon Cream extremely itchy for you?

Thankfully the Mupricon creme within a day had it subsiding. I'm still on the creme now and the infection is almost completely gone. I hope this will be the same for you, and that you will also find an antibiotic that can work.

That is great news and hoping it will do the same for me. Am not sure how long I am supposed to use the cream. I had another issue a few weeks back called "peri-oral dermatitis" involving two creams that I have to use for months on face around mouth and nose. She tested my nose for Staph but it was negative unlike the ear.

I'm going to check into seeing if I can be desensitized to antibiotics. Not sure if it's possible. I think I read there's a rapid way to do this if needed. Not sure if this is something that can be done and will work with your MCAS.

I don't think I can do this with MCAS and am pretty sure that I am highly allergic to the ones I mentioned and FQ antibiotics nearly tore my tendon (but my dermatologist was never going to give me an FQ anyway). Her first choice was a cephalosporin but since I am allergic to penicillin, it's too risky.

It might be good to try compounded, as doxy is light orange in color. You don't need the infection getting worse!

Definitely cannot do anything with an orange dye, thanks for letting me know! Will inquire about the clarithromycin that Jeff mentioned and another one that someone mentioned to me (not in this thread) called Tindamax if it comes to that point. But hoping the cream alone will work.

I'm glad that works for you, @AndyPandy. Be careful though @Gingergrrl if trying it. I'm extremely allergic to tea tree oil.

I am actually so allergic to tea tree oil that if someone uses it in another room, it can trigger severe symptoms for me. But I am an allergic freak so this does not apply to most people!

 

[Mrs Sowester]

Sorry you're having such a bad time Gingergrrl.
I've been taking Doxyclyline for 6 years for Acne rosacea it also stops my gums disease progressing. Mine comes in a green or white and green capsule, it's not orange. I have to take it with a meal - I vomit if I take it on an empty stomach or just with fluids. Apart from that the only problem I find is that it makes me a little constipated so I take probiotics to keep everything moving.

 

[Jennifer J]

I remember you mentioning it to me and how weird that I am now in the exact scenario. Had you taken steroids that lowered your immunity prior to the staph infection on your ear? ...Was the Mupiricon Cream extremely itchy for you?

I know, it's the exact same scenario I had written to you about. Sorry, you're going through this. I was thinking, I wish I had the energy before this happened to you to start a post about it.

I hadn't done steroids right before this. I asked the urgent care doctor why this happened. He said I was unlucky. Well, that's just great! I still want to see if there is something that contributed to it other than luck, so I can try to prevent this from happening again.

Interesting you mentioning about extremely itchy. It has been the last few days. Drove me crazy last night. It may have been slightly itchy before and I don't remember. Also, when I put it on, it burns a little and my ear gets hot and red.

She tested my nose for Staph but it was negative unlike the ear.

Interesting. I didn't know they tested for staph on the skin. I wasn't tested. He just said it ?probably was cause it had spread and how it looked. Curious, how did she test your ear? Please, don't use your energy to answer, cause you need it elsewhere. I can ask the doctor or google.

Her first choice was a cephalosporin but since I am allergic to penicillin, it's too risky.

Same here. That's what was first choice and couldn't do also for same reason.

I don't think I can do this with MCAS and am pretty sure that I am highly allergic to the ones I mentioned and FQ antibiotics nearly tore my tendon (but my dermatologist was never going to give me an FQ anyway).

Ouuu, sorry to hear that it nearly tore your tendon , and of course sorry that you are highly allergic. When I get evaluated for MCAS I will find out about the desentization for antibiotics, and if possible with MCAS. Maybe other factors come into play, too.

Will inquire about the clarithromycin that Jeff mentioned and another one that someone mentioned to me (not in this thread) called Tindamax if it comes to that point.

I looked up Clarithromycin after reading it worked for Jeff and he's allergic to your list of antibiotics (which is like my list). I was surprised the doctor recommended it and Jeff was fine (which I'm glad it worked for him) because the site said:

You should not use this medicine if you are allergic to clarithromycin or similar medicines such as azithromycin (Zithromax, Z-Pak, Zmax), erythromycin, or telithromycin, or if you have...

I'll have to ask him about it at some point.

I am actually so allergic to tea tree oil that if someone uses it in another room, it can trigger severe symptoms for me. But I am an allergic freak so this does not apply to most people!

Me, too. It comes through the halls into my room even with my door closed. Thankfully no one is using it on my floor now. The littlest smell of it and my mouth and eyes are burning like hell. It hurts so bad and doesn't subside. Then everything else starts up. It hurts me and affects me more than any other odor I've been exposed to. Sorry you're a little allergic freak. :thumbdown:

Thank you for posting again. I hope the creme works well for you. Also, thinking of you and your health matters of a couple days ago, hope that is much better and your doctor was of help.

 

[Sidereal]

I took one dose of clarithromycin years ago and it gave me a fairly severe MCAS reaction.

 

[Countrygirl]

@Gingergrrl I am sorry to hear of your fresh problem. For what it is worth, I found that I could tolerate doxycycline while I react badly to other antibiotics. I hope you find something that you can use without adverse effects.

 

[Valentijn]

I didn't have problems with doxy except some motion sickness if I tried to look at screens or read things for about 2 hours after taking it. So I'd take it early in the morning and go back to bed.

No MCAS type reaction to it for me, but I don't have that type of reaction to anything I think.

 

[Gingergrrl]

Thank you all so much for your replies and the Mupiricon cream (not sure if spelling it right) is already working and the cyst is better and is less red and has not spread at all. So it looks like I will not need an antibiotic after all unless something changes.

I have had so many negative affects from the steroids (too many to even list) that I do not plan to take them again even for IVIG (with the exception of my daily Cortef which I cannot stop or could lead to an adrenal crisis and anaphylaxis to food again). But my long-term plan is to taper off of Cortef even if it takes a full year.

 

[Gingergrrl]

I know, it's the exact same scenario I had written to you about. Sorry, you're going through this. I was thinking, I wish I had the energy before this happened to you to start a post about it.

I know it is so odd how we both had this exact scenario so close together! No worries re: starting a post and you've been extremely helpful to me.

I hadn't done steroids right before this. I asked the urgent care doctor why this happened. He said I was unlucky. Well, that's just great! I still want to see if there is something that contributed to it other than luck, so I can try to prevent this from happening again.

I am certain now that mine was from the steroids although I am also pretty unlucky overall LOL.

Interesting you mentioning about extremely itchy. It has been the last few days. Drove me crazy last night. It may have been slightly itchy before and I don't remember. Also, when I put it on, it burns a little and my ear gets hot and red.

First it was severe pain, then itchy, and now much better with the cream.

Curious, how did she test your ear?

Sorry, I think my last post was unclear. She tested my nose with a swab that was sent to a lab and was negative for Staph. She did not actually test my ear and could tell immediately just by looking at it that it was Staph.

When I get evaluated for MCAS I will find out about the desentization for antibiotics, and if possible with MCAS.

Yes, I would love to hear more about this although my MCAS doc has never mentioned it and I suspect he thinks it would be too dangerous for me at this time.

I looked up Clarithromycin after reading it worked for Jeff and he's allergic to your list of antibiotics (which is like my list). I was surprised the doctor recommended it and Jeff was fine (which I'm glad it worked for him) because the site said:

A friend actually pointed out the same info to me (off the board) re: Clarithromycin being in the same class as Z-pack and I am also allergic to erythromycin (spelling?) so am pretty sure this one would not work for me. We are all so different, it is so hard to predict.

Me, too. It comes through the halls into my room even with my door closed. Thankfully no one is using it on my floor now. The littlest smell of it and my mouth and eyes are burning like hell. It hurts so bad and doesn't subside. Then everything else starts up. It hurts me and affects me more than any other odor I've been exposed to.

My step-daughter used to use tea tree oil but it is one of the products that she can no longer use at home b/c I react so strongly to it (vs. many other scented products of hers that I can tolerate or am even okay with).

Sorry you're a little allergic freak. :thumbdown:

Yes that is me (the little allergic freak ) along with my other title which is the Queen of rare side effects .