Sick of being sick

[AThurston]

Beth, I 'm praying you get anwsers and feel better soon. You're in my thoughts, try to rest (when you can). I'm sending you warm wishes and a big ole hug!!!

[Bobbie]

If this infection doesn't give us all a mental breakdown, it will be a miracle. Hang in there, Beth. Maybe with summer coming, things will ease up a little. We're "pulling for you" and for each other.

[getwellsoon]

We all need to hang in there. I'm coming up on the end of my Vanco taper and why should it work any better than the other two, plus th e pulse I did. Can you all tell I'm depressed and not expecting to even get well? All this and a colon that "looks" fine. Don't understand why we have such trouble when things look good but whatever. I guess eventually we will all kick it but might not be until they find a cure. I hope they are still working on something out there because Dificid was a bust for me I think. Hope everyone has a better weekend and can feel a little calmer and peaceful. Carol

[Bobbie]

Carol,
C. diff. is like a merry -go - round. Up and down and no reason.We are all in the same boat. Hang on. Someday something will work for you. I know you are depressed - me too. I love to garden - bought lots of flower and haven't planted one yet.

Last year, I was doing great - attended big "Optimer" kick off. Now I am "not so great." Even though I was one of their "stars" they wouldn't provide it for me - free or at a reduced rate. How quickly stars decline.

Hang in there. That's all we can do.

[Bobbie]

Liz,
I "feel" for you. Too much "stuff" on your plate. I feel for you about your mom. So difficult to decide what to do do.

You are one smart lady to be able to handle all this stuff. Remind yourself of how much you've accomplished.

[getwellsoon]

Sorry I sounded like such a Debbie Downer. I'm thankful they didn't find anything bad in my colon, don't get me wrong but I just want some answers as to why I can't kick this CDiff for good and why I have nausea etc. and feel bad sometimes. Right now I feel great because I'm on Vanco but I know when I come off the fun begins. Anyway, I'm hanging in there and will take it one day at a time and am thankful for how far I have come. I was deathly ill this time last year so at least when I relapse I don't get as sick. Hope everyone has a good weekend and feels well. Carol

[beth22]

It seems that no one has any answers for me at all. I got D again yesterday at work and had to come home. Saw the GI. All my tests for stool were negative for everthing - c diff and other pathogens, although PCR is still pending from yesterday. The only thing that I had was high thyroid antibodies and a low white count. I feel like I am shaking - like a tremor. That could be from the thyroid or it could be that I am completely stressed, I guess.

But, the bad news is that the GI can't do a FT for me right now because the hospital policy is in "limbo" as they are trying to get an answer from the health dept. about the procedure and doctors have been asked not to do it even in an endoscopy center. So, my choices are to have a sigmoidoscopy where biopsies will be taken. No anesthesia and no big laxative prep - just two Fleet's enemas. Or I can do a colonoscopy with the required prep, but no FT, which leaves me open to relapsing. But, the doctor can take a biopsy higher up, including the ileum, where the FT was depositited years ago that started me with all the food intolerances. It could be sent out for culture.

My other choice is to do the home infusions and see what happens. So, right now, I'm really confused and very depressed. I've lost more weight that I can't afford to do. I also have this horrible burning in my stomach. I haven't really had stomach issues. If I opt for the colonosocpy, then I guess the doctor can do an upper endoscopy too and see what is going on. Or if the home enemas work for me, but I continue with stomach issues, I can just have the upper done - no prep for that except not to eat.

I don't know what to do. I welcome anybody's take on this and letting me know what they would choose for themselves if they were in the same position.

Thanks.

[amyc]

Beth, do you have Hashimoto's or Graves disease?

[amyc]

I would probably try the home infusions or go back to the doc in Oakland who did your colonoscopy FT. I wouldn't bother with scopes without an infusion afterwards if it was me.

I just read that Hashimotos is supposed to make you hypothyroid, which would cause C, tiredness, sluggishness, weight gain etc. That doesn't sound like you.

[Bobbie]

Beth,
I wish I could suggest something. In an area as big as LA, there must be someplace that can help you. I will be glad when the school year is over and you can spend some time trying not to do 100 things at once. Stress is bad, and you have a lot to be stressed about.

[getwellsoon]

Ithink I would go with the home infusions also. I would still request more testing to see exactly whats going on with the parathyroid and or thyroid. That can cause so many symptoms and make you feel awful. I wish we could help more but maybe a fresh opinion on all this is warranted now. Fresh eyes might see something, maybe a new Endo or GI. I know, you hate to go that route but I think at this point I would. Hopefully if you choose the home infusions that will cure you and all other things will be moot. I will pray that you find the answer to this dilemma. Hang in there, we're all praying for answers for you. Carol

[beth22]

Thanks, everyone. I am supposed to see a different endo - even my stubborn internist suggested it. He still doesn't think my problems are related to the parathyroid, but rather the thyroid. I'm not sure. I was told that I have Hashimotos and I asked him if I could have Grave's and he said yes. But, I don't have the bulging eyes and some of the other signs. So, I really don'tknow. Before c diff, I used to be C, which can be from low thyroid. Apparently some people with Hashimotos fluctuate between low and high - thyroid spews out hormone and then it burns itself out. I will try to find a competent endo - one who is a provider. I have so many muscle, joint and bone pains though and I doubt that this is the thyroid. It is fibromyalgia and I know that SIBO can cause it, so probably other GI illnesses can too.

I don't think the thyroid is the main problem though. It would not have given me all the food intolerances I have had for the last 3+ years. Also, I had the Hashimotos way before c diff and I would get the shakes and trembling, but never D and no food intolerances. So, it may be making this worse, but it is not the main cause. I guess I will try the home infusions. If the hospital gives the go-ahead for the FT transfers, then my GI will do one. No other doctor would do one for me as long as I am testing negative though and for the last year I have been. Apparently the PCR was negative too, although I am not 100% sure. I called the hospital as the on call doctor was no help and the lab tech said he couldn't give me the results by law, but was giving me a "hint" that they call the doctor if there is anything to call about, that is, a positive test, but they didn't call mine. So, I guess that means it was negative. Will check Monday to make sure.

Spent the day doing some wedding stuff with my daughter. I thought I was going to pass out at one point after lunch, but I did ok. I haven't had any vegetables yesterday or today and am back on higher doses of Pepto, which also worries me because it can be toxic. The blood test that was taken for that was mishandled by the lab so I had to go and re-test last week. Hopefully I will know next week. In the past, the bismuth was never detected in my blood, but I am a bit worried, as I have taken a very small dose almost every day. Another reason to try something different.

Yes, I will be glad when the school year ends, Bobbie. The kids are wild right now and it really affects my nerves too.

Will try to sort out what to do. My donor still needs to test for c diff. It is not as easy as doing the other tests as they can go in the preservative bottles, but as you guys know the c diff has to be run in right away. Not all labs take normal looking stool either, so we may have to forego the c diff test completely. She never tested positive before and has no symptoms. The culture and the parasites were negative.

Anyway, I am hoping to be able to finish working without any more problems. Hopefully, I can set up the infusions soon - probably after I move my mother when I will be more relaxed and maybe my donor can try and get the c diff test. I also have to gather all my supplies - saline solution, etc. The only thing that I am wondering is if I should do the infusions first or do the sigmoidoscopy first to see if it is some kind of colitis or Crohn's maybe. I'm not sure if that would be better, as that needs different treatment. My internist thinks my symptoms are not from active c diff, but from all the relapses that I had which damaged my intestines. I know the vanco did a number on them too. I always felt bad on vanco - cramping and looser bms.

[AThurston]

I think I would do the colonoscopy before the home infusions. That's me tho, your internist is most likely on it with damage/trauma to the colon. At least they could tell with the scope what is going on. Disease,trauma, damage, etc. I continue to pray that you feel better soon as possible..

[beth22]

I decided that I will do the colonoscopy. I really need to know if I have an infection or some other type of inflammation or colitis. The only way is to look. IMy PCR came back negative. If the doctor doesn't get permission to do the FT, then I will just go and do the infusion at home after the colonoscopy. I'm not sure if I will have to wait for a couple of days if he takes biopsies or not. W I don't want to introduce any other problems as the biopsies will be open wounds. But, it might be ok - I need to ask. I will also ask the GI to do the upper endoscopy at the same time and hopefully between the two he can get some information. I still wonder if I didn't get some bacteria that did not belong in the small intestine with the first colonoscopy transfer 3 years ago. The contents were put into the terminal ileum, which is the small intestine. It was after that when my problems with the food intolerances got bad. According to the SIBO specialist, you are not supposed to have that kind of bacteria in the small intestine, so maybe it started the SIBO. Hopefully I will get some answers and help. This was not a good weekend. The test I turned in did not have M, but it seems that when I have turned in samples with M before, that is when I get a positive test. I have had it this week, but not when I could get a sample. Seems to be intermittent and it is really getting on my nerves.

[AThurston]

Beth, M is a sure sign for me that c diff is back. I've noted tho with IBS the M is different it is not as purulent. Sounds like you have a plan in going with the colonoscopy & endooscopy. Hopefully they can schedule it soon and you don't have to wait too long. Take care. My prayers are with you..