Case History, Success Story, Confession, Advice

[shopgirl5]

Up until 2012 I was a firefighter and paramedic for our local department. I loved it. I served in the Army Reserves and was a critical care medic for pediatric transport team, and a suture medic in the ER for 9 years. I was never scared. Brave. I have been a mother since I was 18 years old. I never fretted more than normal. In 2010 I started nursing school which was logical to me in a chain of progression. I began to get sick, weird sick. Arms and legs became weak. Fatigue. Near narcoleptic. Lymph node pain, and a load of other symptoms. So when finishing nursing school which I did, I was trying to figure out what it is. After, many specialists I got the fibromyalgia dx which doesn't fit the picture then psoriatic arthritis which doesn't fit the picture either. Treatments for both failed. So I was precepting in ER as a nurse with all these awful things, fighting through 12 hour shifts and working FD. It was getting where I couldn't lift patients, or even hold my arms up to suture. More speciists no answers. Went on leave from both places, no pay, no answers in 2012. Retired early from the FD. Went through some physical therpay which helped a little. Sometimes it was hard to walk, and sometimes my back would stiffen. Went back to the hospital in a teaching position (ugh) and then my sister became ill in October 2012, critically ill. I was her medical POA, and in the ICU. I developed a UTI and URI. I got on omnicef and stupid me no probiotics. Three weeks in came the fever, headache, and fatigue. Then my grandfather died. Then I was diagnosed with cdiff after the ER through out my first stool sample, the day after my grandfathers funeral. I couldn't spend time with my sister because I had cdiff, and she didnt need it. Then my grandmother decided to get a colon resection for colon Ca despite the high risk. Think she just wanted to be with my grandpa. I was advised by her doctors to stay away. In November I had already tried flagyl and was now on vanc. My grandmother had complications, ended up with flu, cdiff, pneumonia, and empyema. December 15th my sister fell in the hospital, and passed away Decemebr 20th from a head bleed at 34 years old. All the while, I still have cdiff and on vanc, my son and daughter get the flu, both with secondary bacterial Infections. My daughter was the worse. The doctor called, and told me that if her blood counts don't come up, they were goi g to admit her for diagnosis; suspected cancer of the blood. They rechecked labs in two days and they were on the rise. Viral suppression. At this point I lost 30 pounds. I developed PTSD OCD panic and depression. I was taking the meds and seeing a psychiatrist and counselor. In January my grandmother had enough and put herself in hospice. She died a long terrible 12 days later January 26. January I tested positive with toxins A and B. time for Dificid. Took me a week or two to get the money for the med. 3500$. After ten days I was still having the smell. Two days after that I passed a ton of white mucous. The the smell was gone, along with the cdiff. I tested negative March 6, 2013. I instantly felt relieved but skeptical. I was still having loose stools but tested negative several more times. Finally ID called and said it is gone.

Needless to say, I was thrilled. Going out more spending more time with the family, and letting go of the rigorous cleaning regimen I had the whole time. I hate bleach hate it. If I never smelled it again I would be happy. All was on the up and up.

Notes: I could not tolerate any probiotics except for L Reuteri which calms my stomach and small bowel. I ate oatmeal, rice, potatoes, and chicken. I was starting to eat more and gain weight. Happy.

Then..I. April I developed a UTI. Ecoli. I cleared it on my own. Then Two weeks later another. Klebsiella!? What. Never ever had a klebsiella UTI in all my years of UTIs leading to cdiff. Took Macrobid, got D no relapse. It came back took Macrobid, got D no relapse. New UTI group b strep. Took Zithromax, no D no relapse. November 2013 UTI klebsiella. Took keflex and S Boulardi, no D no retest because I'm still constipated. Still no cdiff today. I do have urinary urgency, and at times In The middle of the night I am incontinent. So I am cleaning urine off my bathroom floor at 3 am many nights. Now I have lost a total of 38 pounds. Going to a hematologist soon for some answers.

Confession, and I hope this helps others. So When The klesiella UTIs started my OCD became worse than it had ever been. It's a nasty bug, and I was concerned for my family. I started the 1:10 bleaching regimen, and it has not stopped. My OCD is terrible to this day. I still wear gloves, wipe everything down, and bleach my bathroom thoroughly. I have had two negative urines in December, a huge ovarian cyst that ruptured making me ill, and a big fall where I hit my head and neck two days after Christmas. Two days later I developed a headache like nothing else, and today is the first day it is gone. I didnt know what I had. What I do know is that I am still very scared about doctors offices, laundry, close contact with my family, amongst other things. I had tried multiple meds and therapy. I am still hysterical at least once a day, and cry all the time daily. Is try and have tried to fight it off this whole time but the PTSD being a coexisting problem has made it difficult. Before flu season started I knew a bad day was coming, so I'd put myself together and go shopping or out to eat wih the kids. If I was out of the house my mind is better. Now it's flu season I made to ENT once about the headaches and have t left my house since January 2. I don't feel like I am healthy enough to handle flu, and my son can't get vaccines. My psychiatrist wants to admit me for shock therapy which is barbaric to me, and causes memory loss. I don't want to forget my children's memories. So I am fighting the best I can to get better. I have been to CBT therapy to reduce triggers and deal with them. However, all the longer I am ill he harder it is to stop compulsions, bleaching, handwashing etc. Please the best advice I can give to you is to rest, don't let it overwhelme you, get help when you need it, dont deny that you need it, and find your faith whatever it may be. It's hard to trust when things keep piling on. Take each one off like a layer of cloths, till you find yourself, and it will be a new self. I am a fighter, or I would have given Into the depression along time ago. I will probably get intensive treatment when the flu smoke clears.

I still look forward to days of wellness. They will come. Have hope, and give yourself a break. Don't blame yourself, cdiff picks you. Rest seriously rest. Don't let yourself get too worn down. Body and mind. I pray for everyone here, for peace and wellness. Thank you for your friendships, and I often can't believe how amazing people are. Xox Wendy

[seekingcure]

Very touching, Wendy. You have certainly had more than your fair share. If you weren't having trouble coping with all this, I would think there was something wrong with you.

I didn't realize psychiatrists even still did shock treatments. My poor mother had those years ago (when I was still a child and I"m 62 now). They are barbaric. Please don't let them do that to you. Mother is 93 now and has severe dementia. I can't help but wonder if those "treatments" (I'd call it torture myself) contributed to it.

It's encouraging that you've been able to tolerate several rounds of antibiotics without relapsing, makes me think at least your gut bacteria is fairly healthy. Celebrate the fact that you are negative. It's a big deal!

I find this time of year to be somewhat depressing myself and I'm not overly prone to depression, although it does run in my family. And, although I've never been OCD, I find that c-diff tends to being that out in most of us. I routinely wipe down things with my bleach wipes and won't let anyone use my bathroom yet, even though I'm testing negative. I have become quite germaphobic. I cringe when a doctor walks into the room and, without washing his hands, extends his hand for a shake. I carry my own pen, open doors and hold cart handles with a paper towel, avoid hospitals like the plague. I recently went to a fast food restaurant and ordered a sandwich. The girl took my money and walked straight to the back and starting making my sandwich. The counter where she was working was in plain view. There's no way I could eat that sandwich. It made her mad, but I asked her to start over and please wear gloves.

You are sounding more positive today and you have given us all good advice. Praying you will find your own balance and peace. Spring is just around the corner.

[amyc]

Please read this information and watch the video presentation. I really wonder if you are suffering from epstein barr virus. Dr. Lerner has done amazing work in this field, and some other doctors around the country are now agreeing with him. I took valtrex for several months because I had high EBV titters, swollen glands, bad fatigue and it helped a lot.

http://www.treatmentcenterforcfs.com/li ... .20.12.pdf

Valtrex is effective against human herpes viruses, and EBV is human herpes virus 4. Doctors are now starting to look at HHV 7 I think too as a possible cause of lingering health problems too.

[amyc]

Here is the link to Dr. Lerner's practice in Michigan. It has links to the videos and a PDF download of treatment guidelines.

http://www.treatmentcenterforcfs.com/

[amyc]

Yes. The UK is ahead of the US in terms of recognition of ME, the serious form of chronic fatigue syndrome. The fact that Wendy's health problems started with the viral syndrome as she was finishing nursing school makes me suspect it could be the source of her continuing health issues. EBV and human herpes 6 appear to cause quite a few problems for a significant minority of people who catch them.