Is my doctor( nurse) nuts!!!

[jen74]

Ok, I just got off the phone with my urogyne's nurse. I have been having issues lately with feeling like I have a UTI. I felt somewhat worse on Wednesday of last week. I called the docs office on Friday and the nurse said to drop off a urine sample to the lab on Sat. Morning. She said I should use a catheterized specimin. Well, I did that. My hubby and I used a new different cath for the first time, a lofric, which I must of had a reaction to becuase it really hurt and now my UTI symptoms are worse.
ANyhow, my doc prescribed over the phone on Sunday trimithoprim antibiotic for me. Here is the bad thing, I am allergic to all the anti-B's. I had taken miralax which is a laxative a couple months ago which is polyethlene glycol, and I had a reaction, I got hives so I cannot take that anymore. Well, get this, I took cipro after that and had this prickly ithcy feeling all over my body. I stopped that and started the trimitoprim and had the same reaction. I started researching it and found that they put polyethelene glycol in most all the antibitoics, so I think that may be what I am having these reactions to all the anti-B's.
To make a long story short, I called my doc and talked to the nurse. I asked her if I should drop off another urine sample since I am feeling so much worse just to see if using that cath could have caused a UTI. She said No. She said to just do an instillation, that it was likely my IC that was acting up. I asked her what I would do if I ever have a UTI since I have all these reactions to the antibitoics. Her answer was that they would proabably just not treat it unless it got real bad.
I thought that was a little odd. SHe said I am a complicated case and that they would only treat the infection if it got serious. DOes this sound right?
I am looking into seeing a holistic type doc and maybe go the homeapathy route since I am allergic to all these antibitoics. I do see an allergist who said that I could try maybe taking the anti-B if I had to alon g with an antihistime. Not benadrly though as it also contains that polyetehelen glycol.
I am a little upset with the nurse. Is it even safe to let a UTI just go and hope it goes away on it's own?
Jen

[petrie86]

your nurse is out of her bleeping mind! you NEVER go without treating a UTI!! it could go into your kidney's then your end up in the hospital. I would call back and ask to speak only to your dr. that is redicoulos. I've never heard of that before. I'm really concerned. I cant believe she said no, and then told you to do and instill as if that would get rid of a uti? Only antibiotics get rid of a uti. It's bacteria... did she learn nothing in school? I'm not even a nurse and I know that.
I would be livid if i were you. Try calling again!!!

[Kara29]

If that urine culture comes back positive, they have to treat it. If the culture did not come back positive, some docs will just let the symptoms go. I hate that they do that and all docs are different. Can you find another doctor. There is no excuse for letting a true UTI go including the fact that you have IC. That doesn't give them the right to let it go. It sounds like they dont want to help you becasue you are having reactions to antibiotics. If you have a true infection I wonder if IV antibiotics would give you the same reactions. When you see the holisitc specialist you may want to ask them if you have multiple chemical sensitvities. They have ways of working around this if they want to really help.

I've had some docs tell me even if I have a positive culture they would not treat me unless I had a fever and started to vomit. I never get fevers.

I don't understand how they work sometimes.

It's a matter of finding the right medical team that will work with everything you have going on and not make excuses.

Rachel is right. Call back and ask to talk to ONLY the Doctor even if you have to wait until he makes his after hours calls. Or you could call him on call if the office is closed. I would worry that doing an instill even if you have a true bacterial infection would shove it up closer to your kindneys and that is not good. Please call the doc before doing this instill.

Well Wishes,

Kara

[ICNDonna]

Actually if you're allergic to ALL antibiotics, there's not much choice for treating an infection. It would probably mean that what an infected patient would have to do is what people did before the age of antibiotics, which would be to drink lots of water and wait for it to run its course. You might want to pick up a home test kit so if you feel like infection, you can test at home and tell your doctor's office about that result --- they aren't 100% accurate, but any time I have told my doc that I tested positive, they've had me come in to have a culture done.

I'm allergic to at least two antibiotics, but have been able to take most of the others. My doctors try not to give me antibiotics unless it's absolutely necessary so I won't develop other allergies.

I hope you feel better very soon.

Warm hugs,
Donna

[SandyRN]

My thoughts on this are that if you have a true UTI and can't take the abx for it orally, you might be able to take them by IV. Any doctor's office should be able to start an IV and run in a dose of abx IV and be able to also give you antihistamines to ward off any reaction you might have to it. I don't know the breakdown of IV abx, but it seems like a possible route to go. There are tons of IV meds they can give you to ward off side effects. So, even if you are allergic to that antibiotic, they can treat the allergic reaction before it gets too bad.

Leaving a UTI untreated can lead to a serious kidney infection and is really nothing to play with. Any nurse should know that. I'm wondering if shes not a RN but a medical assistant and really didn't have the answer for you.

Watch your symptoms for another day or so and if they continue or get worse demand they do a culture, and mention the IV idea to them.

[jen74]

Hi ladies.
Thanks for the advice and info. I am really frustrated right now with my doctor. My hubby and I called the Pharmaceutical manufacture and they said the IV anti-B's dont have all those inactive ingrediants. The only issue is, I am prone to getting UTI's and I cannot afford to stay in the hospital for days just to have some antibiotics. They charge like over $1000 a night just to stay in the hospital and our insurnace sucks! We will go broke and I am not the only one in the family with health issues, my son has asthma and takes meds regularly and my hubby also has some issues. I wonder if they can give me a shot or something, where I can just keep going back each day or something. At least it would not be so expensive. One pharmacist said that I should not have to stay in the hosiptal for that , they should have infusion sites or something that you go to each day.
As far as the instill goes, my doctor is the one who said it is ok to do an instill while having an infection, he said he gives them to his patients who do not have IC for pain relief when they have a UTI. I just dont know.
And she is a nurse. I was a little shocked at what she said too. I have an appointment with a holistic/western med doc on Thursday. I am drinking some herbal teas that are used to treat UTI's and it helps some with the pain. See, my culture for the typical UTI came back ok from Saturday, but I cathed that specimin ( nurse said that doc only believes in the cath specimin), well, I am thinking maybe the cath could have caused a infection since I feel so much worse, but this nurse said " no, I dont think you have a UTI from the catheter."
If I get any worse, I will go to my urgent care center by my house and have them do a culture for me. My husband said that he wants to call the office back and demand to speak to the doctor. This is so scary. I mean the instills are all that helps my IC but they say anytime you use a catheter, you risk an infection. That is bad for me since I am allergic to the anti-B's. I just dont know what to do anymore.
Thanks so much ladies or all your advice, I appreciate it.
Can you do IV antibioics at home and not have to stay in the hospital? That would literally put us on the streets, we cannot afford it with our insurance deductible.
Jen

[SandyRN]

Your doctor's office should be able to give you single doses of the antibiotics either by IV, or IM (shot in the butt).

There are lots of IV infusion home nurses and that's all they do is come and hang bags of meds and start IV's.

[jen74]

Thanks Sandy.
But are all the antibitoics like cipro or trimethoprim available in a shot form?? Also with IV antibitoics, do you keep the IV in at all times? That also scares me, you hear about people getting sepsis or staph infections from IV's all the time. I would prefer a shot really. Also, I wonder if I should do an instill. The doc said it was safe, but I dont know. I dont trust doctors at all anymore. Does cathing really have a huge risk of UTI, even when your clean as possible?

Jen

[SandyRN]

I'm a nurse and cathed more women in my career than I could ever count. The first month I cathed myself I had an infection at least once a week...so yes, it's possible. Now I've gotten better at it and know how to keep things as sterile as possible at home. It's not like we have sterile trays and a huge sterile workspace at home.

I don't know that all abx have a liquid form, but I could look them up for you. I know that many abx for UTI's definately do. If they were to put in an IV they would put in the heparin lock, which is basically a little plastic tube with a port for the needle to go in to run the solution in. You wouldn't be dragging and IV bag around the house with you. It's doubtful they would do it this way, and would most likely give you shots at the doctor's office.

If you ever needed it though, like I said, there are infusion nurses that make daily rounds to give the meds and check IV's....and unless you are really sick you wouldn't need to go to the hospital at all.

[waterflow]

I've had the instills done with a UTI. It actually helped with it some.

[kadi]

My doctors have told me not to do instillations if I have an infection as the medicines can carry the infection into the bladder wall.

I keep UTI test kits at home so that I don't mistake flares for UTI's & drive my doctor & my finances crazy with false alarms.

I've been told the same thing as Jen about being allergic to all oral antibiotics (except Macrobid) & if I need one that's not Macrobid, I'll have to be admitted for 24 hours of IV antibiotics. All my doctors (2 urologists & primary care doctor) get anxious when they see my list of allergies & start warning me. No one has ever mentioned being able to help me in-office. I honestly think that if I have to have it done, I'd definitely want it to be in-office or in -hospital. During my last reaction to Cipro by IV (at my cysto/hydro), I was glad to be surrounded by nurses & anthistamines ready to go. I was covered in hives within minutes & it took awhile & several doses of injected Benadryl to stop it. And if Jen is also allergic to Benadryl, I'd think extra caution would be in order....

I'm so sorry, I know this worries you. I worry about it myself. I've cancelled so many things because my friends or their children are sick. They think, "cold, no big deal". I think of what it could turn into & how expensive it could become & stay away. Since I'm in my 30s and almost all of my friends have little kids in day care, it gets kind of lonely sometimes.

[ICNDonna]

I'm glad to hear it's the fillers, rather than the antibiotics themselves, that are the problem. That makes an infection much more treatable.

Donna

[Judith56]

I have done IV antibiotics at home. You will need to have IV access with an indwelling needle. Most likely a nurse would start it, and then show you how to work the IV set-up or they may come by daily to infuse it for you. Nowadays it is really no big deal. Hope you feel better soon.

[vm]

I honestly would want to double check everything your nurse told you with the doctor. Too often I have had the office nurse give me generic information that wasn't relevant to MY case - or just flat out wrong info. See if you can speak directly to your doctor - even if it means he calls you in a few days when he has a spare few minutes.

[jen74]

Hi ladies.
Thanks for that info, I am glad to know I would not need to stay in the hospital, that expense just scare me. I dont know how the hospitals are everywhere else, but I live in Chicago and the hospitals here are like highway robbery! Can you believe they charge over $1000 just for a person to stay in a room over night! That is crazy. The bad thing is my insurnace deductible is so very high ( $2,500) and they still only pay 80% after that. I am already in high over my head with medical bills.
I know that if I am very sick and ever need to be in the hospital, then obviously, I would go, but just for the IV anti-B's, I thought that sounded a bit extreme.
I talked to my allergist yesterday and told her about the prickly feelings and itchness I was having with the cipro and trimitoprim . She said that becuase I had no huge rash or hives all over, she said if I need to take the cipro and timithoprim, that I should call her, go to her office and I can take it there and hang our for a hour or so and see what happens.
I have an EPI-pen, but I pray I dont have to use that because it is epinephrine, and I hear that can cause alot of bladder pain in people with IC. I hope I never have to use that. That is what they will give a person who is in anaphlaxtic schock. I cannot even tolerate benadryl, though, I may be able to take a shot form of it if they have it since it may not contain all those inactive ingrediants.
I did an instill last night,My hubby helps me as it is easier that way, and trust me, we are sooo clean, I mean we are cleaner than when they do it in the doctors office, everything is sterile, except the latex free gloves we wear,but they are new from the box. Heck the doc told me I did not even have to wear gloves, to just wash my hands before I do the instill, but we wash our hands and use the gloves just to be safe.
I still have pain today. I though about calling the doctor back, but I may even just go to the urgent care over here by my house and leave another urine sample for them to culture, at least I will have the resluts before the weekend. Thanks for all the info ladies, I appreciate it very much.
Jen

[sphinx]

I used to work as a home health nurse and went out and did IV treatments in people's homes. It really is a nice way to do things, and you don't have to be hooked up all the time, just the short time while the antibiotic is running in. An infection related to having an IV (sepsis) which you mentioned being worried about is really not all that common, and is preferable to *not* treating the infection.

Any time you are cathed there is a "risk" of introducing bacteria, but if you are using clean techniques, the risk is minimized. A cathed sample is better because it's less likely to be contaminated.....a simple dipstick can figure you have an infection or not, but running a culture will also give the doc information on what antibiotic the bacteria is "sensitive" to (which anti-b could kill it).....that way they can treat you properly the first time. Lots of docs will start you on cipro or macrobid right away, and if the culture/sensitivity results come back differently, will change. Since you are allergic to the *fillers* in these antibiotics, IV antibiotics seems logical to me!

If you do end up taking the oral pill, benedryl is in IV/IM form also. Oh, as far as IM injections go in the doctor's office, I know in my office, we only keep one antibiotic for injection as stock. But if they want to give you an injection, perhaps they'll give you a prescription and you can bring the med back to them so they can administer the injection?

Just thinking aloud.....or actually, typing aloud.

Feel better.

[meandmybladder]

I may be wrong here but, the thought occurred to me that you might be able to use a pharmacy that compunds meds. The doc could order the antibiotic and specifically state that the ingredient you're sensitive to be left out. I wonder if that would be possible?

[sphinx]

I may be wrong here but, the thought occurred to me that you might be able to use a pharmacy that compunds meds. The doc could order the antibiotic and specifically state that the ingredient you're sensitive to be left out. I wonder if that would be possible?


Sounds like that might work, worth a look anyway..although cost might be a factor!

[jen74]

Hi Spihnx and meandmybladder.
Thanks for the ideas. See the thing is, we are just guessing that it is one of the fillers in the anti-B that I am allergic to, not 100 percent sure. It just seems that it would be since I have had tha same exact reactions with two totally different antibitoics, though they both contain that polyethelene glycol that I am allergic to. So we just are guessing that this is the issue.
As far as the dipstick tests, forget those things, they never pick up my infections. That is so weird. The last infection I had, my UA was completely normal, yet my culture showed a large amount of bacteria. The urogyne I am seeing now says that there is always white blood cells in the urine when you have a infection, but that is not true in my case, as I dont always have the white blood cells.
I went yesterday to the urgent care centr near mt house to get another culture taken. I just want to be safe than sorry and make sure. The doctor there did not give me any antibitoics though as she said I am allergic to way to many antobitoics and she did not want to be responsible for giving me an antibitoic and having the chance I go into anaphlatic shock and die, and then she will end up in court. She said that it is better to wait to see what the culture says in my case.
I wish there was a way I could find out just what exaclty I am allergic to in the antibitotics so maybe I could use a compounding pharmacy if that is even possible.
Thanks again ladies for all the info, I appreciate it.
Hope you all are feeling well today.
Jen

[sphinx]

I hope you get some answers soon, and get this resolved!

***hugs***

[SrMaggie]

I, too, hope you can get this resolved. It seems like it is eating up your life trying to figure out all the details of the allergies.
I am not a medical person and these boards always say that we are not a substitute for a medical consult with your own doctor, so take this for what it is worth - but I'm surprised that you can drop off a specimen. I asked my doc about that once and he said it wouldn't be accurate. That the time between my giving the specimen and when it got to him was too long and it would not have been kept at the right temp....
Insurance issues are tricky. Again, I'm no expert in that area either. Isn't and Urgent Care facility more expensive than an emergency department or a referral from your doctor? I know that we have been asked not to use Urgent Care wtih our insurance for that reason. Having someone come to help with the IV sounds like a good alternative.
I went to a compounding pharmacy last month and they didn't take any insurance. I had to pay out of pocket and then file for the insurance myself. I was glad it was only $50 which didn't totally break the bank, but it could have been much more which would have changed my mind about even trying to get the meds. I guess some places keep costs and work loads down by not bothering with filing claims.
Good luck with all of your concerns. It is tough enough having IC without compounding it with all the other allergy issues.