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Last Ditch Rant.... Con't
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Continuation of other "last ditch rant" post

So last week I was in the ER for right flank pain again. I thought it was my liver again since I was having so many problems with it and fats. They took a urine sample and said it looked like I had a UTI but they cultured it to be sure. So Monday the 17th they called and said it was definitely a UTI and called in some antibiotics. So I start Keflex Monday and starting Tuesday all my GI problems die down. No more gas, bloating or D/C. Reflux has even died down. So should I assume this is SIBO?

I ended my antibiotics yesterday and all my problems came back 10 fold. Joint pain, malabsorbtion, food/fat intolerances, liver pain, dry mouth, depression, gas, bloating and D/C. My GI wants me to take an HBT test and wait 2 weeks for the results before treating me with new antibiotics. I can't live like this for 2 more weeks. I can barely eat anything!! When I was on Keflex I was able to eat fats again, it was great! Now I can't. I am still waiting my DNA Stool test results that I took with my nutritionist. They come back today, maybe my GI DR will accept those results and put my back on antibiotics based on them. I am already on Theralac probiotics since April but that doesn't help either.

I hear SIBO just keeps coming back every time you kill it. This is a nightmare. What would happen if I checked myself into a hospital for depression and got put on TPN and antibiotics/probiotics? Would this all go away then? I am suffering terribly from malnutrition, my hair is falling out in huge clumps no matter how much vitamin D and others I take. What can I do??

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Antibiotics kill the bacteria in your gut, both the good and the bad. You can take probiotics every day to re-establish the good bacteria. Avoiding sugars and carbs for a while would be a good idea also. I suggest you load up on probiotics and drop all sugar for a while. Several weeks at least.

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I had problems with urinary tract infections, including hospitalizations since I was a child, probably due to undiagnosed celiac disease. As a teen I started drinking cranberry juice and it helped enormously to control the infections. I only had problems when I stopped drinking the juice, and I could control them again by resuming it. Here is a reference on a study.

http://women.webmd.com/news/20100823/cranberry-juice-fights-urinary-tract-infection-quickly

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I had problems with urinary tract infections, including hospitalizations since I was a child, probably due to undiagnosed celiac disease. As a teen I started drinking cranberry juice and it helped enormously to control the infections. I only had problems when I stopped drinking the juice, and I could control them again by resuming it. Here is a reference on a study.

http://women.webmd.com/news/20100823/cranberry-juice-fights-urinary-tract-infection-quickly

This is good information and one which I try to tell those with UTI problems. You can also purchase cranberry capsules, which have concentrated cranberry powder, in case cranberry juice is too sweet. I have only ever had one UTI in my life and I did not even need to take an antibiotic as the capsules got rid of it. It works really well.

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Ok I saw my Nutritionist today with the DNA stool results. It looks like I have a massive yeast infection in the gut. I asked him why the antibiotics made me feel so much better and he feels the probiotic I was on "theralac" was not the right one I needed and the antibiotics killed it and it made me feel better. I guess it was doing more harm then good. He put me on a regimen that follows the DNA print out. It includes all items from Standard Process vitamin line like, Gastro Fiber, Prosynbiotic, Cranberry Complex, Vitanox and Gut Flora Complex. I took my first doses about 45 minutes ago and I don't seem to be intolerant to any of them yet so I am hoping this works. He told me to expect a large herx response but to keep taking them no matter what. I guess we will see...

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Ok I saw my Nutritionist today with the DNA stool results. It looks like I have a massive yeast infection in the gut. I asked him why the antibiotics made me feel so much better and he feels the probiotic I was on "theralac" was not the right one I needed and the antibiotics killed it and it made me feel better. I guess it was doing more harm then good. He put me on a regimen that follows the DNA print out. It includes all items from Standard Process vitamin line like, Gastro Fiber, Prosynbiotic, Cranberry Complex, Vitanox and Gut Flora Complex. I took my first doses about 45 minutes ago and I don't seem to be intolerant to any of them yet so I am hoping this works. He told me to expect a large herx response but to keep taking them no matter what. I guess we will see...

LittleMel....if you do have a systemic yeast infection, taking these supplements will not get rid of the problem. They may help a bit with gut balance but systemic yeast infections require a strict "no sugar" diet and an anti-fungal medication. These are just the standard supplements people sell to make a lot

of money. Natural supplements do not eradicate a yeast problem.

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I have shown my GI the yeast test results but she still will not give me an Anti Fungal medicine. She wants to run more tests first. Gah~ Can this thing drag out any more!!

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I have shown my GI the yeast test results but she still will not give me an Anti Fungal medicine. She wants to run more tests first. Gah~ Can this thing drag out any more!!

I know, I know....extremely frustrating. They always seem to want to run way too many tests while your suffering goes on. I am sorry and hope you get some results and what you need to feel better soon!

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They need to find the reason for the UTI. Some people have reflux were some of the urine backs up inside of them instead of exiting. This can cause a UTI. In my daughter's case it was not that. It was caffeine! The caffeine was an irritant to her bladder/urethtra. Because it hurt her so much to pee, she wasn't drinking as much liquid as she should be or urinating as often as she should have. The Dr. limited her to one caffeine containing drink per day. Told her to drink a lot of water. And to switch to showers rather than baths.

Other things that can cause UTIs are diabetes and kidney problems. And then there are times when we just don't know. This happened to my friend. She wound up in the hospital with symptoms that didn't seem like a UTI. But they were.

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So sorry to hear about your trouble! :-(

I would definitely look into the yeast overgrowth diet. You may need to stay on that for many years, to be honest. Some with systemic yeast infections do. Although there are even cookbooks to help with this, like 'The Yeast Connection Cookbook.'

Also, I don't know if this will help - it just has a few suggestions in general - but it might: http://www.valley-fever.org/valley_fever_org_natural_therapies.html

Valley fever, the disease mentioned in the link, is a fungal lung infection that can become systemic. There is currently no cure for it; the best hope is to help the body fight it off so that it goes into remission, but it can re-emerge at any time. Western medicine uses some anti-fungal meds for this purpose, but the valley fever community also tries out various nutritional and food based help, as well, which the above link shows a few of. Consuming larger amounts of garlic is one of them. I know that fresh herbs, especially uncooked, have been studied and found to have slightly antibacterial and anti-fungal properties, so that might be worth adding to your food, too. Certainly won't hurt, right?

As both the yeast and the valley fever are all fungus, it might be of some use. :-)

I have shown my GI the yeast test results but she still will not give me an Anti Fungal medicine. She wants to run more tests first. Gah~ Can this thing drag out any more!!

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
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    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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