Its been a while since I last visited here. Life has been crazy with IGM ever since Sept 2011. I think in my last post (almost a mth ago) I mentioned been declined by my breast specialist since I didnt wanna go on Prednisone. Things have just been the same with breast abscess bursting open before my periods. These last 15 days developed a new cyst like mass just above my suregry scar. Also underwent an Ultrasound which was long time pending ever since my wide excision surgery for the breast abscess in Oct 2010. It showed many lessions termed as cysts and abscess but it also mentioned to rule out Breast TB.
Has anyone been testedfor Breast Tuberculosis? Any blood tests, FNAC, biopsies for this TB stuff? I dont really have good doctors around here in UAE who knows how to deal with IGM. I'm planning to go back to my country India for treatment. Have come across few case studies stating that many patients with recurrent abscess and IGM were tested for Breast Tuberculosis and came out negative. But when these patients were treated with anti TB drugs it did cure them after 6-9 mths. I'm planning to go for this route in India after doing all the tests all over again :( ...
Has anyone heard of this?? Please share any info you have on this...
Also wanted to say that I always think of you guys Jo, Jennifer, Pandora, Fibromommy, Noelle and all the others though I can't find time to come online. Life has gone for a toss with this IGM and you people are the only ones who can understand this pain and suffering. I pray for everyone's health and well being.
I have been thinking of you too, and wondering how you are doing. I have tried to message you here, but the site said that you are not accepting messages. I am sorry to hear that you are still having problems. I feel close to you because we are both trying to make it through without the medications. I was hoping that maybe you hadn't been posting because you were doing better.
I have not been tested for TB of the breast, but I have read things similar to what you mentioned...that patients with IGM usually test negative. I never heard about IGM patients responding to anti-TB drugs, though. Do you know where you read that? I would be interested in reading too. It sounds like it could be promising.
Are you moving to India, or only going there for treatment? Do you have family there/people who can support you and help you? Why do you live in UAE right now?
I am doing ok. I haven't tried any treatment at all for several months...and I haven't had any abscesses since January. I am SO excited about that...but it is still there : ( I know that only you guys here can understand that. There are still big lumps in there that grow and change and hurt. I have tried to explain that to some of my doctors recently, and they just have that blank look on their faces, and they don't understand what I am talking about. The worst thing lately has been the burning/tingling scalp sensations. I still feel very sick sometimes...but sometimes I feel better too. So...MAYBE I am slowly getting better? I don't want to get hopeful because I am so afraid that it will get bad again.
Anyway, I am happy to hear from you. Please keep in touch when you can.
Ditto on all you said especially feeling connected since both of us have opted to do without meds so far and also the responses we get from our doctors. Those blank looks they give us as if we just described an alien to them.
Good to know you are feeling better and hoping you and all of us here recover out of this illness totally. What I feel bad for is that nobody has a definitive cure. Its just on a trial and experience basis. I was so sick and tired of those cuts and FNAC pain and scars that I had given up on going to visit a doctor. No more cutting or poking around the abscess actually made me feel stronger mentally though not physically. Just as you said the problem hasn't been resolved either but atleast I didnt have to bear the added side effects of those heavy drugs, pain and non healing scars. I feel the pain when most of our friends here post of thier side effects from medicines and mastectomy etc.
I had made a change to my lifestyle since I stopped seeing the doctor to check how it worked like less of gluten and dairy (couldn't resist it totally :)), no junk food, quit caffiene totally, adding light exercises like yoga and light Pilates form, and tried been more cheerful and stress free. Trust me it helps tremendously. The abscess were recurrent every 20 days or so but the output was reduced by 80-90% like I could manage the cleaning and stuff at home. Just this last mth I had this cysts like lump which was painful and had radiating sharp pains going upwards towards my armpit. Hence got an ultrasound done and the radiologist mentioned that I was doing a wrong thing by not seeking medical help.
I also mentioned to her that since I haven't had the poking and aspirations done my body got some time to heal on its own and it did a good job. This may not work for all but its very important to be mentally prepared for whatever treatment you are following and secondly keeping a positive attitude. I'm a lot more calm, composed and confident right now (even with the cysts and the pain) than I was while on those antibiotics.
I'm an Indian by origin but settled in UAE(Dubai). The school closes for thier summer vacation on this 23rd up untill mid Sept. A long break from school for my daughter and hence thinking of going to India for vacation and at the same time for a different opinion hoping to find better medical attention in Bombay (Mumbai). Here is the link for the case study you may want to go through http://tinyurl.com/65cguaf
I'm so sorry for the long update. Thanx for listening though :) ...I'll try and update more as and when I find time. I may go to India end of this mth or first week of July. Will update you guys of any improvement or new info on this.
I havent heard much about this but i do know my breast doc tested a tissue sample for tb in the beginning of my diagnosis. She tested my tissue and my drainings the first few months of my diagnoisis for everything even fugus that can take months to grow and everything was negative in my case. My rheumatologist did a blood test for tb and sarcoidosis( and chest xray) before i started meds a few months ago and all were negative for me. You are so strong to do it with no meds and stand by your beliefs. I pray u both have continued healing and strength.
I was tested for TB b/c I was told the steroid treatments would not be an effective treatment if tested positive. My test came out negative but the steroid treatments where not effective for me. I am deeply sorry you are dealing with this unknown disease and I truly understand you wanting to find someone to help you...I recently had drainage of pus from my biopsy incision and my doctor did a couple of cultures which had no bacterial growth but did indicate... rare white blood cells. I read that rare wbc are trying to cure the body/ infection. My body was weak, tired and enduring lots of pain.
I am feeling better now after seeking acupuncture treatments and from the powers of mediation. I found the Rosicurcian on the web which has lead me to changing my thoughts to positive energy and mediation. I have been to several doctors all which know nothing on GM and I decide to seek all possible help. Please let me know what you find in India and share with us all. I will pray for you!!! Best of Luck.
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