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FINALLY gave in and started daily antibiotic.

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FINALLY gave in and started daily antibiotic.

Post by Little Audrey on Sun Dec 27, 2015 6:28 pm

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

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Re: FINALLY gave in and started daily antibiotic.

Post by Little Audrey on Tue Feb 16, 2016 12:16 am

I'm still around.   Trying my darnedest to find time to get on here and post a decent message and see what is going on with everybody.    I STILL don't have time tonight, but I AM going to be on here soon to check on everybody.     I have been going nuts with everything in my life.    No time to breathe!    I do hope everybody is doing well or at least as well as can be expected with all you have going on.   Miss you all!!!!

Audrey

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Re: FINALLY gave in and started daily antibiotic.

Post by conventhigh21 on Thu Apr 21, 2016 3:30 am

Are u in the UK? This surgery sounds terrible imho.Have u written a review on NHS CHoices on the surgery website etc. 
Didn't the dr get a specimen to te lab to check for an infection and which antibiotic the bug is sensitive to?

Have you ever seen a website called floxiehope. 
I would urge you to log onto it urgently.
It is owned by Lisa Bloomquist and explains about the dangers of the antibiotic fluoroquinolones and other antibiotics such as the Macrolides. Trimethoprim is alright as far as I am aware but has to be avoided in  the Long QT syndrome as do several other antibiotics. I knew about the dreaded cipro but not about it causing pulmonary hypertension.
You could be right about having interstitial cystitis where the gag layer of the bladder becomes damaged due to infection but can be repaired.If you google private hospitals u will see info about procedures that will help. I am unsure if NHS do these or not.

Pls get a specimen of urine to the lab somehow for microbiology and culture and sensitvity. No use keep trying diffrent inappropriate antibiotics that damage people further.

I use bicarb of sda but only a quarter of a teaspoonful in water wvery couple of days. I have acidosis caused by topiramate. When I stopped taking the drug my sumptoms cleared up eventually. I always check every medication for side effects. I use drugs.com as imho this website is very accurate and honest.



Good luck.

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Re: FINALLY gave in and started daily antibiotic.

Post by conventhigh21 on Thu Apr 21, 2016 3:33 am

PLease check with  yoururologist. It sounds as thugh the surgery may have messed up.
Are you in the south by any chance, hope u don't mind my asking? I am a newbie/

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Re: FINALLY gave in and started daily antibiotic.

Post by Hadleigh on Thu Apr 21, 2016 9:48 am

I have just finished a 7 day course of Cipro, it was the only antibiotic my uti was sensitive to, reading the floxiehope site is a bit alarming but if these are the only antibiotics that will work what choice do we have.
I had read all the horror stories before taking it but also all the excellent reviews from people who had no problems at all.

Nelly

PS Little Audrey is in USA
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Re: FINALLY gave in and started daily antibiotic.

Post by conventhigh21 on Sat Apr 23, 2016 6:22 pm

https://www.scribd.com/doc/309957583/Amended-Levaquin-complaint

The Commissioner of the FDA with held important information about a fluoroquinolone drug to avoid loss of profits.

Why hasn't she been put in prison for harming people?

Hadleigh.

I am sorry that you have taken the view that there is justification for taking a dna attacking drug namely a fluoroquinolone. I feel sure that had you been affected by these drugs which attack/damage the mitochondria of the cells that you may very, very quickly change your mind, with respect.
The point is that these drugs are prescribed indiscriminately by drs. 

 One tablet can be enough to cause devastating damage to the bdy. Just ONE tablet. On floxiehope yu will see story after story to substantiate what I am writing.

There are safer, not safe, but safer alternatives to   fluoroquinolones. Inmany cases the drug was prescribed when there was not even an infection to treat in the first place!

May I say that in the case I read about on your website the dr had no even bothered to identify if there was even an infectiion present in the first place and/or which antibiotic the 'possible'
 organism was sensitive to.

If people want to risk being crippled by an anntibiotic especially a luoroquinolone that is their decision.

However patients are very rarely advised/informed by doctors about the side effects of drugs. 
Some people say that this is because drs are extensions of Big Pharma and receive bribes from pharmaceutical companies for prescribing the latest 'wonder 'drug.

I do not know. Now these dangerous antibiotics have to carry a black box warning. Hopefully they will be banned in the very near future before anyone elses life is devastated.

Take care

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Re: FINALLY gave in and started daily antibiotic.

Post by conventhigh21 on Sat Apr 23, 2016 6:30 pm

Audrey, Nelly Hadleigh
The macrolides are almost as bad. SOrry. Pls google antibiotic toxicity. Cipro is particularly dangerous. Pls log onto floxiehope.

BTW just been sent an e mail stating that Pharmaceutical Companies won't invest in research into safe antibiotics because there is more money to be made keeping us all sick etc.

I am not into Conspiracy Theories so cannot comment.

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Re: FINALLY gave in and started daily antibiotic.

Post by Hadleigh on Sat Apr 23, 2016 7:05 pm

I respect your views but we have to make our own choices, I had to take Cipro and suffered no ill effects, I had read all about it but my sister is a senior hospital pharmacist so I was happy with her advice.

Nelly
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Re: FINALLY gave in and started daily antibiotic.

Post by conventhigh21 on Sat Apr 23, 2016 7:42 pm

Yes. Some of the people I have spoken to about the dangers of the fluoroquinolones are also highly qualified being Senior Consultants as well as less senior doctors.

As you can imagine I have discussed the subject avidly during the two and half years that I was struck down with antibiotic toxicity.

Drs have confirmed the validity of my comments whilst iothers deny it.

Still what else would one expect. They are afraid of being sued.
Sadly some doctors and their families have also suffered at the hands of these toxic antibiotics which incidentally are more toxic to the cells than chemotherapy drugs.
.
All wish that they had never taken the drug.

The mystery is this. 
1. Why are some people okay taking it?
2. Why do some people have a severe adverse reaction after taking ONE tablet

3. Why can some people be okay taking a course but when they are prescribed the drug again at a future date sometimes years later they have serious problems.

Sorry to disagree with you but I personally would not take this drug under any circumstances whatsoever.
I suffered a severe reaction some two and a half years ago. All I knew was that the antibiotic caused a mutitude of signs and symptoms such as I had never ever experienced before.

The worst is the severe neuropathic pain, the burning, the numbness and tingling, the muscular stiffness and spasms. The severe anxiety and depression the drug causes. Now it is disclosed that this drug also causes pulmonary hypertension.

The quinolone attacks the dna hich fgoes on to produce more and more dna danmaged cells. This causes ruptured tendons, tears in the tendons, damage to the central, autonomic and automatic nervous systems.

The list of damage to the body is almost endless.

Take care.

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Re: FINALLY gave in and started daily antibiotic.

Post by Hadleigh on Sat Apr 23, 2016 7:50 pm

Thank you for your views but I think we will draw a line under this topic.

Have you been diagnosed with hpth or are you still on that journey ?

Nelly
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Re: FINALLY gave in and started daily antibiotic.

Post by conventhigh21 on Sat Apr 23, 2016 8:19 pm

They ar not my views but scientifically based evidence from over 200 peer reviews. However I will draw a line under it . 

Yes I have been diagnosed with secondary hpth. 

Your website was actually on floxiehope.


Thank you for asking.

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Apology to Hadleigh and Nellly.

Post by conventhigh21 on Sat Apr 23, 2016 10:49 pm

Dear Hadleigh and Nelly I am very sorry if I came over stroppy.
It is no excuse but I am having a very bad day. In fact very bad four days. 
I am so upset due to the antibiotic toxicity business and I would hate anyone else to have to go through what I am going through and when I saw your forum on floxiehope in a posting by joanneg I decided to contact you.
 

I was diagnosed with secondary Hyperparathyroidism in 2009, nil done except to commence ergocalciferol drops for a Vit D level of 9. Since then I have got worse with osteoporosis and now a thyroid disorder.  Hope that explains why I contacted this forum initially. 

Many thanks for reading  this.

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Re: FINALLY gave in and started daily antibiotic.

Post by Hadleigh on Sat Apr 23, 2016 11:29 pm

No problem, actually Hadleigh and Nelly are both me, Nelly, Hadleigh is my username.

So firstly are you absolutely sure your low vitd is the cause of your hpth disease ? as this is a common mistake doctors make, most people with hpth will have low vitd. If you have secondary hpth your PTH will be high and calcium low/normal although it is possible to have primary hpth with a normal calcium. Most of us find taking vitd supplements unwise if calcium is high, just makes symptoms worse and raises calcium even higher. I would hazard a guess that the vitd has not sorted your hpth symptoms as you are feeling worse, you need further tests, scans and a good Endocrinologist, finding one of those can be a challenge !

Osteoporosis, thyroid disease and kidney stones also commonly run alongside hpth, I am presuming you are hypothyroid ? both I and my husband are hypothyroid and he has secondary hpth caused by renal failure, I had primary hpth and surgery in 2014.

Do you have results you would like opinions on ? Calcium, PTH and thyroid TSH, T4 and T3.

Hopefully other members will be along to add their thoughts although it is a tad quiet on the forum right now.

Take care and do let us know if we can answer any questions.

Nelly


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Re: FINALLY gave in and started daily antibiotic.

Post by conventhigh21 on Sun Apr 24, 2016 12:39 am

Dear Nelly 
Many thanks for your very understanding reply .
I have felt quite tearful and upset today due to peripheraal neuropathy and depression as well as anxiety.I think that the thyroid issue is starting up all over again.

To answer your questions re calcium and pth levels.

Sorry but I do not know what they were except that the vit d was 9.

I don't know what the pth was then but will try to find out pdq cos I went privately to a London hospital so getting the info shouldn't be a problem.

My pth was 10.2 a few months ago but that was before I was diagnosed with a thyroid disorder last April-still untreated.

My tsh is 0.16. t4 16.5 and tpoas less than 33. Nil done except to offer rai. I am scared of having this I have 20 non cancerous nodules on the thyroid. I cannot have carbimazole due to cardiac arrhythmia. 

I have a minor kidney complaint , thin basement membrane nephropathy, reflux of right ureteric valve and a problem with the hypotonic collecting system, renal function is good though. I have had recurring uti' s and countless cystoscopies even a couple of dilatation of the neck of the bladder, ugh.

But renal function is good. I have raised lfts due to phenytoin for pilepsy.
I am on warfarin due to a history of blood clots.

I aso have long qt syndrome. I do not know what my present calcium is, my vit D was 68 about three months ago.Target range set at a minimum of 75 nnomls.

I am on adcal D3 and magnesium.
As u say it is a challenge to find a decent endo, the search has got me down. Why are they so lacking in their expertise etc.

Phenytoin is thought to be the cause of the Vit D defdisorder as it depletes calcium from the bones even stops it being absobd from the gut.
I was also taking Lipitor for three years for raised cholesterol but now discontinued due to muscle wastage .

I have been feeling very panic stricken all day but when I read your  e mail just now started to sette down . SOtank you for that it was/is very helpful and reassuring I am sorry for being sucha b.... I can only apologise profusely and reiterate the truth which is that I threw all caution to the wind as I felt so  ill, depressed and terribly anxious.

Such a strange reaction, I can only say that it must be part and parcel of this vile condition.


Hope to hear from you soon.

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Re: FINALLY gave in and started daily antibiotic.

Post by conventhigh21 on Sun Apr 24, 2016 1:03 am

Dear Nelly 
I just remembered a consultant neurologist who I seefor the epilepsy saying that my calcium was a little on the low side then adding 'you are aking your adcal aren't you? I said yes then he said only a low calcium can make u feel pretty ill . To which I quipped 'well I do feel pretty ill, Professor.

He then said that a low calcium can cause cardac arrhythmias, incordination, balance problems and that calcium is important for the healthy functioning of every cell, every systenm in the body. Now this was a consultant neurologist at a London NHS hospital. He did not investigate the high pth or the low calcium level, the vit  d was about 55 then.
I recall the calcium was around 2. i have frequent seizures due tio hippocampal sclerosis. Or are they? Perhaps they are caused by a parathyroid disorder!!

They resemble panic attacks and can occurr several times a day. I take cardicor 1.25 mgms a day for the Long qt which was diagnosed in 2008.

My HR was already ly 5obut has drippednto 36 some years ago. A few years ago it was 12o0. Then after the embolisms and dvt caused by HRT the hr fell to 6o .

Nightmare.

INhave a subclinical hyperthyrioidism as te tsh is ow Tell me something I haven;t got its quickker! LOL!

I have GERD, hypertension, microvascular heart disease, regurgitation of the vheart valves, osteomalacia, osteiopenia ,mosteoporosis as stated previously.

I also have a ow erritin level byut B is 110 to 115.
Prescribed ferrous sulphate for five days only.

Also take seretide inhaler 2 puffs twice a day and Bricynal use sparigly  for copd and bronchiectasis.

I share your views on the diag of sec hyperparathyroidism based on low vit d albeit I am not an expert on these matters .
The neuropathic pain has driven me nuts today/yesterday . I felt as though I could not take any moe pain ever again.

Thank you for your kindness and understanding it makes a lot of difference and shuts out some of the feelings of abandonment and isolation induced by an uncaring medical profession. If u or anyone else knows of a nice, approachable, professional and experienced endo pls can you let me know asap.
Pls can you also advise me on what tests, sans I need please. Many many thanks .
.

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Re: FINALLY gave in and started daily antibiotic.

Post by Hadleigh on Sun Apr 24, 2016 9:08 am

Oh dear, you have so many things going on no wonder you feel so awful, my husband also has a very long list of health problems so I know exactly how difficult it is to cope with all the issues and get the right help.

Many of your symptoms could be caused by a number of your problems but particularly parathyroid and thyroid as both these create many many horrid symptoms, they both affect heart, head, bones, kidneys, muscles, you name it, they attack it.

I'm unsure why you cannot take Carbimazole for the hyperthyroidism as the contraindications listed don't include heart issues, in fact they are a major symptom and require beta blockers. I was hyperthyroid for many years and had surgery in my teens then RAI about 15 years ago, best decision I made as it resolved the hyperthyroid symptoms for good, RAI may at least help you with that problem.

A useful page on secondary HPTH is there:
http://www.yourhormones.info/Endocrine_conditions/Secondary_hyperparathyroidism.aspx

Test wise it sounds like you have had the basics done but thyroid you need TSH, T4 and most important T3. Parathyroid needs calcium, PTH, phosphate and vitd, also renal bloods to include potassium. Scans would be ultrasound and sestamibi scan. Obviously we are not medically trained so can only give opinions based on our experiences.

We are off out for the day but I will check in when I get back, take care and I hope you have a better day.

Nelly
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Re: FINALLY gave in and started daily antibiotic.

Post by Admin on Sun Apr 24, 2016 9:22 am

Hello conventhigh21

I would caution you to apply a degree of scepticism to "scientifically based evidence from over 200 peer reviews".

In my mission to find-out why my medication for Hypothyroidism was not resolving the condition, I found that so-called 'evidence' turned-out to be based-on incorrect assumptions and/or influence by pharmaceutical companies in favour of one specific type of medication (Thyroxione).    Having been adopted, a very large number of medical articles and papers based their conclusions on this so-called 'evidence', which further compounded the misdirection.

One example is assumptions that Hypo and Hyperthyroidism can be diagnosed and treated based-on the TSH level.  The assumption that TSH could tell doctors all they needed to know was made in the 1970s, when it was adopted as 'evidence' and, for most GPs and Endos, they still believe this and ignore all information to the contrary.  This is because the British Thyroid Federation, who produce the diagnosis and treatment guidelines for Hypothyroidism, also chooses to ignore information that disagrees with their 'expert opinion' and, of course, the interests of pharmaceutical companies that provide funding and want to stop the prescription of anything other than Thyroxine for all Hypothyroidism conditions.
Consequently, Thyroxine is claimed to be the only suitable medication for Hypothyroidism.  It most certainly is not, which presents an uphill struggle for a large number of Hypothyroid sufferers.
Another fallacy with treatment of Hypothyroidism is that over-medication is very bad, but under-medication is not a problem.  Actually, the consequences of under-medication are similar or worse than those of over-medication, but this is not mentioned in the guidelines, so it does not exist in the eyes of most GPs and Endos.

There are overlaps between symptoms of Parathyroid and Thyroid problems, which can complicate diagnosis.  Although the two glands are very close to each other (normally), there is not necessarily any link between them, although some people have both Thyroid and Parathyroid problems.  (I do, but they have completely different causes.)

Thyroid and Parathyroid problems can be the cause of many symptoms where there is no obvious connection.  For example, Thyroid problems can affect many of the body's organ functions, especially cardiac.  Osteoporosis and Osteopaenia can be linked to both Thyroid and Parathyroid problems.  However, Thyroid and Parathyroid problems can also be caused by other problems, which is where secondary Hypo and Hyper Thyroid and Parathyroid issues come into play.

There are many members of this (and other) forums who are willing to provide support and suggestions, but the best way to start this is to let us know your blood test results.  Whatever you may have been told by your GP, you have a legal right to receive your blood test results from your GP, private practice and hospitals.  GPs can be difficult about this sometimes and the GP receptionist can be part of this, but GPs are legally obliged (in the UK, this is covered by Section 7 of the Data Protection Act 1998) to provide you with the results on-request.

By the way, 'sub-clinical' Thyroid and Parathyroid diagnosis is just an excuse for inaction and is medically meaningless.  You either have too high or too low Thyroid or Parathyroid function. In the case for TSH, the reference range is very wide.  Each of us has our own optimum range, which is much smaller than the reference range.  This is really a misinterpretation of statistics.  It goes far beyond Endocrine results, as it also applies to vitamin and mineral blood results, where most people need to be mid-range area and not the extremes in order for the body to function correctly.

Edwin (Admin)

I am not a doctor or medically qualified. The comments that I make are based on my own experience and research. Please consult a doctor.
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Re: FINALLY gave in and started daily antibiotic.

Post by conventhigh21 on Sun Apr 24, 2016 10:33 am

Thanks Edwin

I will read your msg again and get back to you. Many thanks for your help and kindness.

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Re: FINALLY gave in and started daily antibiotic.

Post by Little Audrey on Thu Apr 28, 2016 2:16 pm

Ah yes, the Cipro issue.    All I can say is that I will never, nor will any member of my family, EVER touch that stuff again!     It is VERY scary to twitch nonstop over your entire body for 3-1/2 years, have terrible tendon pain, and have nonstop tingling in your arms, hands, legs, and feet.   And the worst part of this was that I had told several different doctors about this, and NONE of them mentioned the Cipro as a possible cause!     I thought I was dying.  I thought I had MS, MG, Lou Gehrig Disease, etc!     Even two #$%$# neurologists did not mention the Cipro!  They had no idea what was happening to me, but never thought of the Cipro.    The nonstop twitching is now gone, as is the nonstop tendon pain and tingling.     I still might get a few very quick twitches in the eyelids when I rub my eyes.   I still have a bit of trouble  times with tendon pain in my inner thighs, but the nonstop pain in the tendons behind my knees is gone.   That was the worst of the tendon pain.    It is VERY hard for me to believe that several different doctors did not have any idea what was going on with me, as I sat there in their offices and complained of these symptoms!    This angers me greatly!   I eventually figured it out on my own, but what about the poor people who either don't have access to the internet or don't know how to research?    This is inexcusable!

Nelly, if Cipro is the only antibiotic that works for your UTIs, you obviously have no choice but to take it.   You have to clear up the UTIs.   This brings to mind a question I recently asked a few of my doctors.    Is it better to take a strong, potentially dangerous antibiotic for 3 days every week (I was getting UTIS every 7 days!) or take a low-dose antibiotic daily?   None of my doctors would answer that question for me.    One more thing I had to decide on my own.

I do have an appointment with a urogynecologist in a few weeks, in hopes of finding the answer to my UTI problem. 

I think Conventhigh asked if I ever had my urine cultured when I get UTIs.  Yes, I have.  Many times.   Then the doctors prescribe antibiotics, which cure the UTIs, and then a week later I get another UTI.    There is obviously something very wrong either with the way my body is made or my system.     I know hypothyroidism, adrenal insufficiency, and iron deficiency can all be the cause of frequent infections.   I am dealing with all 3.     All 3 are being treated.   In might be a little too much to hope for, but I keep praying that once we get these issues properly treated, this might help with the UTI situation, so surgery won't be needed.     I do think I've been dealing with all 3 issues for MANY years!

Good luck to us all!    Health issues really stink!!!

Audrey

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Re: FINALLY gave in and started daily antibiotic.

Post by conventhigh21 on Thu Apr 28, 2016 4:35 pm

Hi Audrey
Re cipro. Sme people have been badly affected after takingjust ONE tablet.If yo wish I cn send a link to floxiehope run by Lisa Bloomquist who was floxed with a fluoroquinolone drug .Cipro being one of this family of drugs.
I do not wish to scare anyone but it is very risky taking these oisonous substances that can damage the mitochondria which then go on to reproduce more damged cells which leads to muscle tears, tendon tears even ruptured tndons. Some eople have multitude of sides and symptoms like myyself these antibiotics attack the thyroid gland causing it to malfunction. Sorry to be a wet bllanket but no dr is going to admit the above and risk being struck off or admonised, ostracised by his colleages. In the US there are steps being taken to ban this toxic antibiotic.

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Re: FINALLY gave in and started daily antibiotic.

Post by conventhigh21 on Thu Apr 28, 2016 4:37 pm

To Audrey and Nelly  et al
Sorry about the typos, having a very bad day. Took a small amount f L Carnitine for the first time last night and had a bad reaction. Never again!

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Re: FINALLY gave in and started daily antibiotic.

Post by conventhigh21 on Thu Apr 28, 2016 4:47 pm

To Audrey sorry re another e mai. 
I am very glad that you would never take any of these poisonous substances aka antibiotics esp the fluoroquinolones which of course aall drs know the terrible side effects of but rescribe them anyway!

I meant to ask what did you do to cope with lall this? Did u change your diet etc? Did u go gluten free as this atacks the thyroid and the joints etc.
Did the signs and symtoms clear of their own accord or did you take any action such as having phywio, acupuncture, Bowens technique pilates etc, etc. 

Did u try a TENS machine. If so was it helpful. What painkillers if any did you take. Anything helpful?

Just wanted to know. Not advertising!

Take care.

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Re: FINALLY gave in and started daily antibiotic.

Post by Little Audrey on Fri Apr 29, 2016 1:11 am

That's ok, conventhigh, I pretty much researched Cipro to death.   I know how dangerous it is.   I experienced it first hand.    Thanks anyway.

As far as taking any antibiotics, when a person continually gets infections and has tried everything imaginable to prevent them as I have to no avail, there is no other option.     At one time I was taking 7 different supplements trying to prevent the UTIs, and I was doing everything my doctors were suggesting, but the UTIs kept coming.     It got to where I was taking Macrobid for 3 days every week, because that is how often I was getting the infections.     I think my bladder needs lifted again, since the bladder lift surgery I had 10 years ago stopped the UTIs for 3-1/2 straight years, but 2 urologists told me that is not the case.    So I was left with a big decision.    I could continue taking Macrobid 3 days of every week or take a low dose of Trimethoprim every day.    I you have never had UTIs every 7 days for many months, you would not understand why I made the decision I did to take that low-dose antibiotic every day.    Antibiotics might not be good for us, but neither are constant infections!

If you are speaking of the pain of the UTIs, the only way to get rid of that is to get rid of the infection.    I kept telling my doctors that I did not have interstitial cystitis.     Since I started the daily antibiotic, my bladder feels GREAT!    Looks like I was right.    I just need someone to figure out why I kept getting the UTIs and fix the problem!      Like I said earlier, when your life is being destroyed due to constant infections and pain, you do what you have to do to stop it.    After trying for many years to stop them on my own with no success, I finally gave in to the daily antibiotic.    Anybody who can't understand why I did that, has never had to deal with weekly UTIs for months and recurrent UTIs for many years.   

As Nelly said about the Cipro, even though we have all heard how dangerous that drug is, and as terribly as I suffered when using it, if that is all that works for her, then she must do what she has to do.     Sometimes life just stinks and so do your options!

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Re: FINALLY gave in and started daily antibiotic.

Post by conventhigh21 on Fri Apr 29, 2016 1:57 am

I agree that people have the right to decide for themselves. What my point was that drs often prescrbe antibiotics when there is either no infection in the first place or fail to prescribe the appropriate antibiotic that the infecting organism is sensitive to.

I too have had countless uti's. I sip water throughout the day . A dr once told me that it is better to keep taking sips than to ake a big glassful every couple of hours. The logic behinfd this is that the sips encourage the urine to be flushed through the kidneys. I also take a quarter of a teasp of Bicab of soda mixed in warm water about twice a day.
I avoid acidic fruits and foods as they exacerbate the kidney pain. Some meds cause kidney pain and other problems. My nephrologist told me to avoid fresh orange juice, coffee, nsaids, aspirin, phenacitin etc as they are all conraindicated or nephrotoxic.
INhave thin basement membrane nephropathy, a problem with the hypotonic collecting system. In the past I had hydronephrosis. Also have lax ureteric valve.  I have had three irethral stretches to dilate the neck of the bladder to take the strain off the enlarged kidney.

I have been on trimethoprim but due to Long  QT syndrome can no longer have this. 

Life dealth a blow but that is how it all goes.

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Re: FINALLY gave in and started daily antibiotic.

Post by Hadleigh on Fri Apr 29, 2016 10:50 am

I have started taking Optibacs Probiotics For Women, studies show they reach ' the ladies bits' we get problems with, uti's being one of those.

So 2 weeks on all symptoms have gone and last 2 tests clear so it appears the Cipro and Probiotics have worked. Despite the issue some people have had with Cipro I will take it again if needs be, I will be having a cystoscopy next time an infection kicks off but I will do my best to keep that in the distant future.

Nelly x
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