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Avatar universal

Has anyone tried the following?

I can't believe that I found this forum. Like everyone else (it seems), my doctors know nothing about this condition and are unsure how to treat it. I've been suffering for two months and in that time I've had a mammogram, ultrasound, core biopsy, 6 rounds of antibiotics, and two abscesses drained and packed. I am very tired of this (though I know most people have suffered longer - I'm just not very patient). I'm going back to the surgeon today (to repack the abscesses) and want to sell her on one of two approaches.

I found a number of articles from respectable peer reviewed journals that indicate that, in some cases, when the cultures come back negative (sterile abscess) it's because they've been looking for gram negative bacteria and that sometimes there is gram positive Corynebacterium that wasn't picked up. Gram positive bacteria respond to several antibiotics with varying degrees of success, but it looks like Corynebacterium always responds to vancomycin (IV antibiotics). Has anyone tried this for their granulomatous mastitis?

Secondly, a doctor from the Middle East has published a recent study in a peer reviewed journal that followed 20 patients with GM and he claims that they were all cured using a specific antibiotic regimen (6 weeks of augmentin, followed by 2 weeks of metronidazole (400 mg three times a day). The link is here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3706113/

I know that we've all been on antibiotics for long periods of time, but has anyone stayed on the same antibiotic for six weeks? Every time my antibiotic seems to fail, we switch to another one. Maybe I just need a longer course?

Please let me know if anyone has tried either of these approaches. I don't know if the doctor will go for it, but I managed to self diagnose my condition, and she's been happy to accept the diagnosis, so we'll see.
7 Responses
Avatar universal
Hi there. I have had IGM for 15 months but finally it has seems to have cleared up.  I was on antibiotics for all of that time (doxy which addresses the corynebacterium) and a few months ago had a six week course of steriods which cleared up the last bit of the inflamation.  I tried the augmentin and metronidazole about 6 months ago with no result - I think this only cures women who have the acute as opposed to the chronic form of this condition.  I never had a fever with my mastitis but did have extreme fatigue. I also had four surgeries to debulk the inflamation and clean out any sinuses as or before they formed which means I have no scarring now which I am very happy about and my breast looks pretty much normal although very slightly smaller - luckily my surgeon had dealt with about 30 cases of IGM previously so knew what he was dealing with. I also went on Dr Weil's anti-inflamatory diet and made sure I had turmeric, pommegrante and ginger every day. I also started practicing yoga/meditation every day. Not sure what worked or if it was a combination of each approach, but I do think there is truth in the fact that the mastitis does eventually burn out whether or not you actively manage the condition or not - probably just a question of how quickly. Hope that helps!
Avatar universal
Thanks so much for your answer. In the end, my doctor didn't agree to the IV drugs, she just extended my current antibiotic (Bactrim). Who is your doctor? Do you have any contact information that I can share with my doctor?
Avatar universal
I myself was never treated with antibiotics, other, than as a preventative to a secondary infection from my sinus sites.

The problem with broad antibiotic therapy is they also affect the rest of your system, and unless you have the right one, they won't do a thing to help.  I have heard stories here of women just prescribed huge doses of antibiotic, one after the other and the only result being their whole systems were totally out of whack.

I have just come back to this as had to take a mental break.

I am going to have a look at the most current research, as you have done.

I do remember the gram positive Corynebacterium theory, and I believe at the time I read about it, it was being studied by a group in Australia.

Wouldn't it be nice if someone could find a cause and cure...as simple as antibiotic therapy, if they find the right one.

Let's just hope for that.
Avatar universal
Very interesting...not sure I understand the corynebacterium but  let me say this...
I was first put on Cipro by my breast surgeon specialist for GM but it got worse. So she sent me to see Infectious Disease doc to give me appropriate med (since I am allergic to penicillin she wasn't sure how to treat it). So the ID doc said I most likely have Staph infection which happens sometimes from biopsies. So she prescribed me Doxycycline since the best IV drug was not covered by my insurance (and it costs $1K). The Doxy made a difference and the inflammation/redness got better within days. This was for treating Staph but from reading your comments...perhaps Doxy could help with GM? Right now am still on both Cipro and Doxy but am dealing with pus forming with 2 burst sites. Surgeon wants to see me again on Monday to determine if I need to go to Operation Room for incision to really clean out all pus and packing/dressing afterwards. I am feeling petrified since I do not want to be cut open...and fear that it will just aggravate GM more than before.
Avatar universal
A staph infection from the biopsy ... hmmm, this might explain something. I seemed to get much worse after my biopsy and, as I mentioned, tried many different antibiotics. I finally ended up on Bactrim which I had already been on (for a normal 10 day cycle, with limited results) and stayed on it for a solid three months. My doctors couldn't explain why it worked, but I started seeing real progress and now my breast feels and looks virtually normal (except for the scars from the lanced abscesses and the biopsy). I don't know whether the underlying infection was staph, or it was just a secondary infection (since every culture was sterile), but somehow, something, responded to longterm antibiotics. Bactrim is often used to treat serious staph infections.
Avatar universal
Oh, one more thing ... Cipro also seemed to make me much worse. I got two abscesses while on it.
Avatar universal
Update: After my debate with myself, I decided NOT to get the incision done.  AND I took myself OFF of Ciprocycline because I had a hunch that it makes me produce pus.  AND guess what?  As soon as I was off Cipro within 24 hours...I had less puss.  I then did not take it the 2nd day and NO PUSS! My breast surgeon was surprised and wanted to make sure so she looked at ultrasound.  She said she sees a pocket of pus so I let her do the needle-draining procedure thinking that I was completely wrong! BUT in the end, she could not find any after much probing!  So I was upset afterwards because each time she goes in...it gets worse.  So I decided to get a 2nd opinion...went to my trusty general doctor to see if he knew anyone good.  I found a 2nd doc who had treated 3 other people.  She agrees with me about not probing...her method is called "Expectant"...which means to basically leave it alone and watch since there's no known treatment...and to only do something when it gets worse. She treats patients with IGM with only antibiotics.  She told me to stay on the Doxy since that's been helping...and it prevents super-infections. No cipro since I could be right about it making more pus. It's been couple weeks now and seems to be getting better.  I still have open abscesses which clear liquid comes out...no pus.  She also did say that she believes the abscess/openings are part of IGM and closes when it's done.  She does not believe in doing any incisions.  The only thing she would do invasively is Core Biopsy...to eliminate other possible causes like Fungal or AFS.
So if anyone out there is taking Cipro and getting pus, you may want to test out if it's making you have more pus.  I do not usually go against doctor's recommendations but in this/my case, I had a strong feeling that I should not be taking it.  Will update again to share my progress!
Foodwise...I read about making body alkaline...but not positive that it would help.  What I AM doing is making turmeric golden tea (root not powder), ginger, garlic, lots of green tea, apples, fruit, kale/veg, more fish.   Almost no beef...occasional ground beef. Almost no soy/tofu. No soft drinks, no dairy.
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