in need of answers and support

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in need of answers and support

Postby mommyof2 » Mon May 14, 2018 10:51 am

This year has been the worst. After giving birth and having two rounds of antibiotics for mastitis last summer I developed c.diff. It took over two months to go away--flagyl and vanco (missed vacation, bonding time with my newborn, had to pump and dump, etc.). Luckily it did (until today--8 months later). Meanwhile I learned that I have a primary immune deficiency and began IVIG treatments four days ago. My GI thinks that in addition to two other autoimmune diseases that I know I have (iritis and ankylosing spondylitis) I also have crohns, but testing has been inconclusive for this. I was planning on having further testing next month, but after a year of doctors appointments getting to the bottom of the immune issues and sleepless nights with a baby who is a terrible sleeper, I just couldn't have another procedure. So today I woke up and have been to the br with D five times. This feels awfully familiar. I've put in a call to my GI and am waiting to hear what's next. Meanwhile I'm trying to move and close on a house tomorrow, I have two kids under 3, and am just overwhelmed with the thought that I might have to wean my baby today and start treatment for c diff again. I'm not ready to wean her, and not sure I can handle the emotional toll for both of us. I'm kicking myself because I went off my probiotics for a week because I ran out and was too busy to go to the store. I restarted them today. Could this have been the tipping point? I've somehow managed to avoid antibiotics all year even though I have no IgA and have had one terrible cold after another. I've literally not had ONE DAY where I wasn't sick or in severe pain from my autoimmune diseases in years. Now I have c diff again. I just can't take this.

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Re: in need of answers and support

Postby AllisS » Mon May 14, 2018 12:36 pm

I can understand why you're feeling overwhelmed. That said, don't jump to the conclusion that you have C. diff again after just one day of D. Remember the three-day rule: three successive days of watery D, three or more times per day. Just as likely, if not more so, that it's a bug or a bout of indigestion. As for the probiotics, stopping them wouldn't trigger C. diff; it's not even known if they prevent C. diff in the first place, though they've gained currency as being beneficial, whether rightly or wrongly remains to be seen. Hope you feel better soon.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at

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Re: in need of answers and support

Postby mommyof2 » Mon May 14, 2018 10:39 pm

thank you. Fingers crossed that things go ok tomorrow. It's just so much...

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Re: in need of answers and support

Postby Ril » Tue May 15, 2018 7:52 pm

Mommy, it would be very unusual to have a recurrence of c diff after 8 months with no risk factors such as exposure or antibiotic use.
Ask your dr if it can be a side effect from IvIg or another cause, but although you would always worry about c diff, I would not expect that to be the cause.
Try not to let anxiety get the best of you!


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Re: in need of answers and support

Postby Machaon » Sun May 20, 2018 2:23 pm

Hi Mom of 2. You've got such a heavy burden on you and life just doesn't seem to be treating you fairly. Still... it seems like you are quite the fighter! Your children will be proud of their strong, tough, resilient, loving mother!

I also have autoimmune problems, though much different than yours. Because of heart failure and an infection which lasted about a year, my immune system became over-reactive and somewhat dysfunctional. Things would bother me that never bothered me before. My health was deteriorating and the doctors and medical experts weren't helping, and were even denying some of my symptoms. That told me that, if I wanted to get better it was up to me. I was on my own with rapidly deteriorating health.

My blood pressure was getting higher and higher and more dangerous. I started tracking my blood pressure about seven times a day. I found various foods, dyes, odors, smoke that was causing blood pressure problems. Over time, I found out that I could lower my blood pressure and reduce my other symptoms by finding and avoiding things, odors, materials, inks, chemicals, dyes, food additives, etc.

Our immune system tries to protect us from attack, and if our immune system recognizes a threat, it produces all kinds of chemicals (hormones, cytokines, etc.) that go to the rescue. The problem is when our immune system recognizes and goes to the rescue of "normal" things, it is constantly producing "protective" chemicals that actually do harm to our body when overproduced!

In other words, my immune system was over-reacting to almost anything that it considered foreign to my body.

My autoimmune problems might not relate to what you have experienced and it might be a waste of your time to read my post, but I thought that it wouldn't hurt to post this.

Best regards and wishes for your health and for your two precious little ones! Bob
Male 74,S Florida

900 weight lifts 600 knee bends

Since 1987 had CHF afib asthma

Fluticasone nasal spray is my asthma inhaler :)

Ex C-diff (4/19/17- 9/12/17) after 10 days dificid

Diet:5 meals <1400 cals, 2 eggs, 3 salads, bars, yogurt, cheese

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