The health expo gave me a chance to talk to top medical experts. They were genuinely interested in answering my questions and explaining things to me. I had fruitful conversations with the chief of pathology from one of Copenhagen’s big hospitals, with a young plastic surgeon who specializes in mastectomy and breast reconstruction, an immunologist, a dietitian and an orthopedic surgeon. As a bonus, a neurologist working on a Ph.D. about pain measured my pain threshold. I learned that pain threshold is not how much pain you can take. It’s the first moment when you register pain. I also learned that I have a low pain threshold, but a high pain tolerance. This means that I am quick to feel pain, but I can take a lot of pain. It’s part and parcel with having a highly sensitive nervous system.
The most fruitful conversation was with the pathologist. He’s a Swedish doctor who has lived in Denmark for over thirty years. I asked him to tell me about Corynebacterium. Where is it normally found? How can it cause an infection? Who is susceptible to Corynebacterium infection? How do you treat the infection? What is it about the structure of Corynebacterium that makes it unresponsive to penicillins? Why does tetracycline therapy work? I learned that Corynebacteria are part of our normal cutaneous flora. It is not just one type of bacteria, but a whole group. These bugs live quite peacefully on the surface of our skin. They can cause an infection when they get into a part of your body where they are not normally found. Elderly patients with other infections and those with weakened immune systems are susceptible to Corynebacterium infection. The immune system can be weakened due to stress on the body. The treatment of choice are tetracyclines, such as doxycyline. They can penetrate the bacteria’s tough outer membrane. Penicillin often can’t.
This Swedish pathologist asked me why I was so interested in this particular bacteria, so I told him about my case of Idiopathic Granulomatous Mastitis. I told him that my doctor is trying me on doxycyline therapy, in case Corynebacterium infection is the culprit. The minute I told him this, he guessed who my doctor is. It turns out they have worked together and researched the presence of Corynebacterium in fluid samples from breast abscesses. I asked him how likely it is that this therapy will work and how exactly this bacteria can cause Granulomatous Mastitis. He told me that there are three possibilities. The first two are the same that my Boob Doc told me about. The third one was new to me and very interesting.
First possibility (and my doctor’s working hypothesis): Corynebacteria migrated from its natural habitat on the surface of my skin to my milk ducts, where it does not belong. How could this happen? If my immune system was weakened from previous illness, it was easy for this bacteria to colonize my milk ducts and create encapsulated infection. I never got a fever, and my GM showed up overnight, out of the blue. If this is what happened, the doxycyline should kill the infection and cure me.
Second possibility: Corynebacterium is notorious for being a sample contaminant because it lives on the skin. It’s not hard to contaminate a sample when retrieving the sample involves contact with the skin. If this is my case, doxycyline won’t cure me.
Third (and most interesting) possibility: Corynebacterium did invade and colonize my milk ducts, but my immune system fought it off. Instead of stopping when the job was done, it kept attacking the breast tissue that had hosted the bacteria, thus evolving into an autoimmune reaction. This is interesting because it suggests an external trigger for autoimmunity. It’s not so much that my body randomly decided to attack itself, but that what should have been a self-limiting attack kept going after the job was done.
I asked the pathologist about the risks of taking doxycyline long-term: Isn’t it true that we have more bacterial cells than human cells in our body? Yes. So, if I take this broad-spectrum antibiotic, won’t a whole bunch of beneficial bacteria be killed off? Yes, and that can give rise to other opportunistic infections and eventually lead to antibiotic resistance and require other antibiotics. Is it a waste of money to take probiotic supplements while I’m taking a broad-spectrum antibiotic? Won’t it kill the probiotics too? Yes. Save your money. That is a huge industry. It’s better to wait until you are finished with antibiotic treatment. How dangerous is it for me to take this drug? Well, teenagers take it for six months to a year for acne without problems, so it should be pretty safe. His final recommendation: take the doxycycline. My Boob Doc is very competent, and this is worth a shot.
The plastic surgeon had not heard of Granulomatous Mastitis, so I told her all about it. It was kind of funny, actually. There was a list of breast cancer symptoms on a banner behind her. She noticed I was looking at it intently and asked me if I had any of those symptoms. I told her I had all of them, and her eyes got very big. “Don’t worry. I don’t have breast cancer. I’ve just been to the breast specialist and got negative biopsy results. I may need a mastectomy anyway, though, because I don’t want to live with this chronic illness.” She showed me a folder with step-by-step mastectomy and reconstruction photographs. I got to hold and feel different kinds of implants. I liked the anatomical teardrop-shaped ones. They were softer than the traditional implants. She told me that I am so thin, that I would need to have fat liposuctioned from another part of my body to fill out the contours around a traditional implant. Then she told me that I didn’t have enough fat anywhere else on my body to do this! (I have lost a lot of weight since I got sick.) Her recommendation: get the anatomical implants, 300 cc.
The immunologist told me that my medical history shows that I have an overactive immune system. It just goes overboard. This is why I have allergies, and this is why an infection can turn into an autoimmune process. I talked to an orthopedic surgeon about osteoporosis. I know that I am at risk. I am small, thin, caucasian, I have taken Synthroid for fifteen years (thyroid hormone supplement that can contribute to developing osteoporosis when used long-term), and I don’t eat dairy products. His recommendation: get my GP to order a bone density scan, take calcium and vitamin D supplements, eat sesame seeds and leafy greens, lift weights and do weight-bearing exercise because this will stimulate new bone production.
Finally, I talked to a dietitian about this anti-inflammatory diet that I have been following since the first of March. I am a vegetarian, I do not eat dairy products or fish, I do not eat sugar, and I do not eat gluten (so no bread, pasta, cookies or cake). I eat lots of veggies, fruits, nuts, seeds, legumes, eggs, brown rice and new potatoes. I try to eat carbs with a low glycemic index. I take a multi-vitamin, B-complex, vitamin D and iron. How can I make sure I get all the nutrients I need? Her recommendation: take calcium supplements and vegetarian omega-3 supplements, and eat a lot. She also suggested I try juicing.
What can I say? Those were three days well-spent. I learned a lot, and I feel like I am on the right track. I am optimistic that I will heal one way or another. I am reassured by the level of professionalism of health care professionals, and I feel so fortunate to have had this opportunity to consult top medical experts so willing to share their expertise.