FINALLY gave in and started daily antibiotic.

First topic message reminder :

Yes, I have fought long and hard to determine the cause of my recurrent UTIs.    Four weeks ago I had the most painful infection I have had in the 14 years since they started.    The pain was so severe, I was about ready to head over to the hospital ER for help!   I had made an appointment with a new urologist since my previous doctor had a real attitude and a big problem with me trying to help solve this mystery myself.   She did not like me asking questions and having doubts about things she said.    I tried to explain to her that since I had to struggle so badly over the past 5+ years to diagnose myself with several different diseases and disorders, I have learned to question EVERYTHING when it comes to my health.    She did not like that.    I do not like her.    I won't be seeing her again.

The new doctor seemed very nice, but he and his staff are always in a HUGE hurry, and it is very hard to discuss anything with them.   His receptionist cut me off mid-sentence the last time I called!    I could see if I was talking too much, but it was the first sentence I was speaking!     Very rude!   When the nurse then got on the phone, the first thing she said was, "Ok, make it quick!  We're seeing patients!"     Really?    When trying to ask a question or say anything at all at my appointments, the doctor AND the PA are in a rush and really don't seem to want to hear me speak.     This is not for me.    I will give them a little time to prove themselves worthy of my time and money, but it's not looking good so far.

When discussing these recurrent UTIs with the nurse after my recent cystoscopy, she told me to just take my cranberry capsules and keep myself clean.    OH MY GOD!     I am a VERY clean person, and if 8 different supplements daily (including cranberry extract) have not been enough to stop the infections over the past 14 years, it's very unlikely that the cranberry alone is going to do diddly!!    Had she taken a little time to know me better and know of my case, she would have known that taking cranberry extract and keeping myself clean was not going to fix the problem!

I called this nurse before my cystoscopy appointment and told her I would like to talk to the doctor before the procedure.  I had only seen his PA up to this point.   The nurse told me there would be no time for me to speak to the doctor before the procedure.  She said when I come in, she will prep me, and then the doctor will come in and perform the procedure.   I told her I WANTED to speak to the doctor first, and if there was no time to do so the day the procedure was scheduled, I wanted to cancel the procedure until I spoke to him!    She then told me I would be able to speak to him for a few minutes before the procedure.

When I arrived for the procedure, the doctor came in.    He asked me if I had ever considered taking a daily antibiotic.   I told him my previous doctor had been trying to get me to do that for a few years now, but I kept telling her I wanted to try to take care of the problem myself with various supplements.     I told him now that I am getting UTIs every 7 or 8 days, and the last one was so darned painful, I was now ready to give in and start the daily antibiotic.    It KILLED me to have to give in to this, but I just can't deal with them any longer.     I told him I really think they are happening because my bladder has fallen again, since the UTIs stopped completely for 3-1/2 straight years after my bladder lift surgery, and that was after I had been getting infections every week or 2 several years ago.     I told him my previous urologist insisted it was lack of estrogen causing the UTIs, but after 7 months of estrogen therapy, the UTIs had worsened, so she had give up.     

The cystoscopy went well.  No stones were found, but I was actually praying they would be, so they could be removed, and maybe the UTIs would stop!      He told me to start taking TheraCran capsules and start the daily antibiotic.    He said TheraCran is much more potent than the cranberry capsules sold over the counter.  I was not happy to find out they cost MUCH more than the over-the-counter cranberry extract, and I have about 8 bottles of the over-the-counter capsules here at home, which I bought when they were on sale over the past few months.   

After the cystoscopy, as I was leaving the doctor's office, I saw the nurse at the desk.   I asked her exactly what the doctor found during the procedure, as he didn't really say anything when he came back in the room, other than that I needed to take the daily antibiotic and the TheraCran.     Her reply was, "NOTHING.   He found NOTHING!   Do you have any children?"   To which I replied I have 2.   She said, "Well, there you go.   That's your problem!   That's why you're getting the UTIs!"     I wish I would have thought to tell her that my grandmother had 10 kids, my mother had 3, and my sister had 2.   None of them had this problem!!!!    I was told years ago that my bladder had fallen due to my hysterectomy.    My mother had a hysterectomy, and she never had any of this trouble!     Am I just lucky?!!!!   

So I went home and started the daily antibiotic, which was Macrodantin.    The doctor told me if we could stop the UTIs for 6 months while taking the Macrodantin, we might be able to stop them or at least slow them down after I stop taking it.   He said my bladder needed time to heal.    I totally agreed with that.    I'm sure the lining of my bladder was shot after having UTIs repeatedly every 7 or 8 days!     

The morning after I started the Macrodantin, I awoke with a TERRIBLE headache, and twitches all over my face!     The twitches really scared me, because I knew it was a nerve issues, and this is exactly what happened to me for 3-1/2 years while taking that darned Cipro a few years ago!!     I let this go on for 2 days, hoping it would stop.   Of course, I checked online for side effects, and nerve damage and headache were both listed.    I knew that pulmonary hypertension was also a side effect, but the doctor seemed to think it was worth the risk for me.    I was not happy about any of this!

Two days after I started the Macrodantin, I called the urologist's office and told them I think we needed to try another antibiotic.  I told them I could not deal with the horrible headache, and I did not like the nonstop twitching all over my face!    I had also started feeling needles and pins all over my body by this time!       The nurse seemed very bothered by me calling.    When I asked her if I could please try a different antibiotic, I could not believe her reply.   She said, "There is no other antibiotic for you to try.   So you either have to deal with the twitching and the headache or deal with the UTIs!  It's your choice!  If you don't want to take, it, you can just take the TheraCran.  You'll be fine."     Oh, my gosh.    I was I was shocked with her attitude and unwillingness to help me!  I knew the UTIS would surely return if I was just taking a cranberry supplement!      I told her there MUST be another antibiotic I could take low-dose on a daily basis.     She said there was nothing!     So I hung up the phone and started my research, feeling totally frustrated and very frightened!   I did see one which I thought might work.

I got myself ready and headed down to our local pharmacy.   I KNEW there just HAD to check out all of my options.  I knew there had to be some!    The pharmacist said that, yes, she knew of an antibiotic that other people have used for this issue.   It was Trimethoprim.     I thanked her and headed  home to call my urologist's office.

The nurse got on the phone.   I told her the pharmacist recommended Trimethoprim.   She said, "Oh, ok."    She asked me what dose the pharmacist recommended.   I told her she did not recommend a dosage.    I felt like telling her that is surely the doctor's job, not the pharmacist's, but I was polite about it all and didn't say anything.   She said she would talk to the doctor and get back to me.   

She called back and said "The doctor is ok with you trying the Trimethoprim.  He wants you to call the pharmacist and ask what dose you need."     WHAT????!!!!    Is that not the doctor's job or his staff's job?!     I never heard of the patient having to determine their dosage of a medication and then letting the doctor know what it is!      These people are NOT impressing me.

So I called the pharmacist, she recommended a dose, I called the doctor back, and they called in the script.   I started it a few weeks ago.   The headache decreased an awful lot, the twitching also decreased greatly, but the needles and pins continued. : (   I was very disappointed.   I figured I would give it a bit of time to see if all side effects would stop.     

I am very happy to say the needles and pins are gone now except for a very slight issue in my hands when I'm on the laptop, but I had this problem ever since I started the Cipro, so it just might be permanent damage, or it could just be from my forearms resting on the computer.    The twitching still occurs a few times a day around my eyes or below my mouth, sort if in my chin, but they are slight and not continuous.    My head does not hurt at all most of the time, but sometimes it does hurt some.      I'm also very happy to say I have not had a UTI for 4 weeks and 2 days!     I hate that it is taking a daily antibiotic to achieve this, but it sure is nice not to have that awful pain just about constantly!      Every now and then I will still get a little twinge of discomfort up inside of my bladder, but it only lasts a few seconds and then stops.    

As hard as I tried to battle this issue myself, I guess sometimes it takes more than determination to reach a goal, and you need to know when to accept help, even if it is not the help you wanted.

Audrey

Hiya 

How did you get on with trimethoprim? IMHO it is a better option/safer than any of the fluoroquinolones which can cuse problems later and not necessarily at the time. Sorry to labour the point but people on floxiehope tell such horrific stories and also the peer reviews written by senior doctors and scientists bear out the horror stories!!

If you were in as much pain as I have been over the last few days due to these swear, swear antibiotics then I am sure that you would be as eager as myself to make people fully aware of their real and acknowledged dangers. 

Anyway I just wondered if u had tried trimethoprim actually.

May I take the opportunity to thank you and everyone for your kind words and support. I am still trying to get a bone profile test done.

It is a nightmare in the UK with some CCG's trying to get tests done. However I understand that this is a National problem.

Drs going on strike have had a profound effect on me. I wondered gif this had added to my distress and feelings of abandonment and isolation and an increased level of pain and anxiety etc.

I hope that you all understand where I am coming from. The hyperthyroidism is not helping me as isn't the secondary hyperparathyroidism diagnosed in 2009 when my vit D as 9. I was put on ergocalcierol drops 20i.u a week plus adcal D3 x2 a day.

Please does anyone know why I put on D2 and not on D3?  I was also started on Lipitor which had to vbe discontinued due to muscle pain, sadle numbness, back pain, wasted muscles at the base of my spine -core muscles. Seen on MRI scan of thel umbar verterbrae.
I also have an annular tear between 4 and L5.

Sorry to be so miserable.

Has anyone used a tens machine. If so did it make things better or worse.
Has anyone any suggestions please for a suitable diet for someone like me with gluten, soy, yeast, corn, cows milk amaranth aspartame intolerance and whois only allowed a moderate amount of vitamin K each day. I am unable to eat fruit ecept bananas, avocados have sarted to make my tongue and mouth burn.

What a nightmare just to keep going on a daily basis.
 

Gentle hugs.

Trimethoprim is absolutely useless if the bacteria is not sensitive to it, I went on Trimethoprim when this last infection started but it did nothing then when the lab tests came back we knew why, the bacteria was only sensitive to Cipro. I keep a course of T at home just in case but without a sensitivity test its hit and miss if it will work.

I did wonder why you were on D2 as D3 is usually the correct one but your Dr may have other ideas. You shouldn't be having problems getting bone profile done, it's a routine test done at the GP's, I usually have it done every few months to keep a check on my calcium.

Tens machine, I tried one when I was pregnant, useless, but I know many people on the Fibromyalgia site swear by them, I wonder if you can hire one to try, you could ask at the GP's.

I hope you have a better weekend, not easy coping with all these things but all we can do is soldier on and hope for a better tomorrow.

Nelly

Thanks Nelly.

Just a suggestion re the trimethoprim. Obviously if the bug is not sensitive t a particular antibiotic no use taking it.

I am glad that cipro suits you.. 

D2.
Nelly d you think I was put on the wrong vit D ? THat is Vit D2 instead of D3?
I would be grateful for your thoughts on this.

I keep hoping that things will improve but am at my wits end with al the pain.

I am scared of damaging my kidneys with pain killers as well.

Kind regards

Nelly et al
Is it safe to eat avocados with kidney disease? I ate one last night and my mouth started to burn.
Will the protein harm the kidneys?

Hugs to everyone

Avocados are high in potassium so depends if you are on a low potassium diet or not, no idea about the burning mouth problem.

Some docs do prescribe d2 with calcium but obviously with primary hpth we don't want the calcium, d3 is the better one for vitd deficiency but many people cannot tolerate any form of vitd, I'm one of them.

It does sound as if your doctors are failing to treat you properly, you need a definite diagnosis and treatment to manage all your issues, particularly thyroid and parathyroid, time to stamp your feet and demand some action ! not easy I know.

Take care

Nelly

Thanks Nelly.
I appreciate your comments. Please could you tell me where to start with all this mess?

I will have to have the blod tests done privately as I cannot stand the stress of trying to persuuade a dr to do their job.

I have epilepsy and was on 500 mgms of phenytoin for  several years. This is thought to have caused posteomalacia, then osteopororis, in 2008 the Vit D was 9. I was then prescribed ergocalciferol. I was already on Adcal D3 for a vit D deficiency disorder which was not being montored!

The same dr who prescribed the ergocalciferol also prescribed lipitor as cholesterol was raised.
I discontinued this due to muscle wasting and back pain.

I have been very stupid, I thought that because I was paying a private specialist that I was being given the best care. However this has proved not to be the case, now drs don't want to know.
The pepripheral neuropathy started very suddenly overnight on December 14 2013 after five days of antibiotics some three in all for an univestgated and unproven infection, pleurisy, I did not even have a cough. I had a severe headache every day from December 4 2013 to May 28 2014 .A throbbing pain in the right , blood shot eye, eye put down eventually to dry eyes, concretions , anorexia, profuse sweating at night which went on for months.

Severe anxiety and depression suchh as I had never experienced before. Panic attacks by the hour.


Please can someone advise me because I am petrified of ths happening all over again and tbh it feels very much as though it is, I am depressed anxious, demotivated, have peripheral neuropathy, NO headache thankfully, no pain in my eye but the right eye feels a bit cold, the opthalmologist wrote in his Report that the eye had some sensory dysfunction which may or may not go away. It did go away but it is now bothering me again in the sense of feeling cold however it is tolerable and not llike previously thankfully.
 No one bothered to follow up the pth of 10.2 calcium was 2.9
I just don't know where to start.

Sorry forgot to say that I reduced the henytoin cvery slowly with my neurologists knowledge as I was told by a dr that this could be causing the myalgia etc. I am taking 25 mgms bd with no extra seizures. I am prescribed clobazam for epilepsy. I also take cardicor for Long QT syndrome, valsartan for high blood pressure, Life long warfarin for blood clots.

Codeine for pain.
Magnesium, Vit B12 1,000 sub lingual, bricynalinhaler and seretide inhaler for bronchiectasis.

I feel desperate.

I totally understand your desperation but we are not medically qualified so can't really give specific advice. If I was you I would start with the GP and if he/she is no good then find a new one, unfortunately it seems when we have multiple issues they don't really know where to start so it's easier to do nothing.

You do need to see an Endocrinologist if your calcium and PTH are still high, he/she must be experienced in PTH disease, it's possible surgery might not be an option with all your other issues but there is a drug called Cinacalcet which reduces levels, Edwin is on it and his calcium and PTH have come right down.

Going private isn't any guarantee for the best treatment, the private Endo I went to see was pretty hopeless, I had to really push her for a diagnosis and referral to the surgeon.

So GP is probably your first move then referral to an experienced Endo, I think that is your best bet.

Nelly

Hi Nelly
Thank you for your good advice. Will try to sort something out next week. Bank Holiday on Monday grrh.

Just chipping in to welcome you, Conventhigh - sorry you have to be here, but glad you were able to find us!

Let me know where you are in the UK and I'll see if I can recall the names of useful endo's in your area from discussions with other forum members.

Best of Wishes, Tigerlily.

Well, I have not been here for a while, and I have a LOT to tell you all.   I don't have the time right now, but I will be back as soon as I can to fill you all in.    

I will day that the Trimethoprim worked GREAT to prevent my UTIs for 7 months, but just as my nephrologist warned, after the 7 months, I got one WHOPPER of a UTI, and this time it was not caused by E. coli like all the others. It was caused by pseudomonas aeruginosa!   This is a much stronger, more resistant bacteria!  This infection was much more painful than the others, but not knowing it was a different bacteria causing it, I started the Macrobid like every other time.  I took it for 9 days!!   My normal dose for a UTI is 3 days!     I knew something was very wrong.   I finally went to the ER to find out what the heck the problem was.   That was when I learned this infection WAS very different from the others!  I did have to resort to the fluoroquinolones again for this infection, because I was told there were only 2 antibiotics which would kill this bacteria; they were Cipro and Levaquin.     Knowing of all the terribly side effects I suffered in the past from the Cipro, I was not going to touch that!    I had to opt for the Levaquin.   I was scared to death, knowing they are both fluoroquinolones, but I had no choice.   I will write more about this as soon as I can.

Yes, the fluoroquinolones are VERY dangerous drugs which can cause tendon pain, and in some cases tendon rupture.   They can also cause nerve damage, some of which can be permanent.     I suffered ALL of these symptoms, and I am left with permanent nerve damage in my left index finger and the bottoms of my feet.  

More later.    

Hope you're all doing ok!!     So sorry I have not been on here for so long!   SO much has been going on!    I now have on average 4 appointments  week!    Not much time to be on the computer except for more research and to find more doctors!

Audrey

Hi Audrey - so glad to know that you are still "up on the horse" and that things are coming together for you in terms of the nasty bacteria getting identified sooner rather than later this time.

Let us know recent developments when you can, but it is a bit quiet on here at the moment so no pressure there!

Love from Tigerlily xxx

Hi Tigerlily,  good to know you're still here!     I do so miss chatting with you all regularly!    Hope things are going well for you too.  I'll have to get back on here soon and catch up on all of the posts.

Had an ENT appointment this morning.    Had to have my eardrum pierced to equalize the pressure on both sides of the drum.     I have not been able to hear out of that ear for over a year now.    I saw this doctor back then.  He said my eardrum was inverted from this pressure imbalance.  He suggested piercing the eardrum at that time.     All I could think of was how painful it was when I had the other eardrum lanced around 30 years ago due to excess fluid behind the drum.   So I told him I did not want to do that at that time.   I kept taking allergy medication, thinking there was fluid behind the eardrum.   It seemed to help some, but the ear never cleared up.    They told me today that there is not any fluid behind there now.    My Eustachian tube is not functioning as it should by opening and closing when I swallow.    I am SO tired of not being able to hear, I decided I would do WHATEVER he wanted to do today to fix the problem!    He suggested piercing the eardrum again.   I was not thrilled about that, but was happy to give it a go this time.     To my surprise, it did not hurt AT ALL!!    And, this sweet man wrote it up as an ear cleaning, so I didn't even have to pay any co-pay!!    What a sweet man!!

Much more going on in my life lately, but right now I need to get outside and swim my laps before the storm moves in.   It's on the way!

Be back later.

Audrey

Great to know you got a good result there, Audrey - you really do deserve some breaks!

Enjoy your swim and we'll be pleased to hear your latest news when you are ready.

Love from Tigerlily xxx