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Amandacc

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Reply with quote  #1 
I have been to see the professor, he did see an infection in my sample so that was a relief its not all in my head! He prescribed me Keflex and then to start the Hiprex if no symptoms. Unfortunately the abs gave me headaches, tongue ulcers and thrush! Lovely. BUT the bladder pain went and i had 10 days of no pain, bliss. I contacted the professor about the side effects and he gave me a new course of abs, nitrofurantoin. Now i feel like crap again and the pain has returned with bladder spasms and twinges. Shall i contact the professor again? Tell him that i dont think these are working? Could I be resistant to these now? I have taken a lot of nitrofurantoin over the last 23 years. I feel like i have taken a step back, i am so sick of this. I just dont know what to do about the pain, it just wont go away no matter what i use.

I read his article in the guardian and was a bit disheartened with one comment about some people never being cured just managed..

I hope everyone is having a good day xx
coboffice

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Reply with quote  #2 
Hello Amandacc

Sorry to hear your symptoms are back. It is worth keeping the Professor up to date with your worsening symptoms to see if he needs to alter your regime any.

Clearing a biofilm is a long, laborious business and there will always be set-backs along the way. Try not to be too disheartened. Drop the Prof an e-mail and ask his advice. Don't forget that if oral antibiotics do not succeed, new improved treatments are in the pipeline and may be available as soon as next year.

Susannah Fraser

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Amandacc

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Reply with quote  #3 
Thanks, i will drop him a line. Do you know what the new treatments are?
coboffice

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Reply with quote  #4 
I believe the new treatments will involve driving antibiotics deep into the bladder wall.

Susannah

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JaneG

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Reply with quote  #5 
Hi Amandacc,
 
Very sympathetic to your situation! I also started treatment with the Professor recently ( end of February ) and he prescribed Cefalexin and then Hipprex to start two weeks later ( I had had very bad side affects from Nitrofurantoin in the past so told him I really couldn't ever take that one ). So I have been on the Ceflex for six weeks and the Hipprex for four so far.

For me things have been almost the opposite of you - side affects not bad at all but not much improvement to speak of in terms of symptoms. I've had more bad days than good so far probably but I thought the Professor's explanation of what happens and why it takes a long time really makes such good sense, and I am going to give this a long time and a good chance - so long as really bad side affects don't happen.

And the support that we can get from reading the experiences of others here helps.  
One thing I have been doing is taking a good probiotic once a day - even though the Professor didn't mention that. I think it might help avoid thrush etc? Perhaps one of the moderators could confirm that?

So I really hope the Professor can find an AB that you can tolerate.

Like you, sometimes I just don't know what to do about the pain - nothing really helps - but if this treatment works - or even helps a lot - in the long run, then it will really be SO worth it!  

Hoping for the best for you,

Jane


Moderatorsusan

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Reply with quote  #6 

We can only say that it's a question of managing expectations. Lots of people jump into treatment and expect that after a week or so things will suddenly get better and then struggle to understand why the pain is sometimes worse or no different. It's often down to several things:

1. Your bugs and symptoms - whilst the bugs may be susceptible to the ab prescribed and be knocked back often another bug occupies the space vacated and you may need another ab or add in naturals such as Oil of Oregano, Grapefruit Seed Extract, D Mannose (if E. coli present or suspected).  Symptoms can change depending on the bacteria.

2. How long you have had symptoms.  An embedded infection is just that, embedded into the bladder wall so will take time for the cells to shed or release and come to the surface of the bladder wall and become active in the bladder where the antibiotics can target them.

3. Other contributing factors such as hormones, thyroid, Lyme disease, gut health or other illnesses which will weaken your immune system. Some of these you will have to explore and treat to add a piece to your jigsaw. 

4. Pelvic floor issues causing additional regional pain 

5. Any ab resistances you may have. Bugs are unbelievably adaptive at resisting and mutating.

6 The inflammatory effects of infection in the bladder and body can often take a lot longer to resolve than the infection and these symptoms will take time to resolve.

Dogged persistence is the name of the game here and for some it can take weeks, for others months and for some years. Remember even if you are only seeing 5% improvement each day it's still improvement and whatever you do, don't compare yourself to others on here. That way leads to a downward spiral of negativity. Your bugs, your body, your rules. Focus on your healing and yours alone. 

You must give this a good shot and take the good days and bad. If things haven't improved after 6 months or so then decide what you want to do but please try to be patient at first. This is not a quick one week fix. Always keep your specialist informed about your progress.  If things worsen significantly or you get a reaction to medication etc. E mail them immediately.  Medications can be changed. 

If you suffer breathing issues or a tight chest, become dizzy or faint, develop a rash or heart palpitations, stop your medication and get to A&E or the Emergency room.  Take all medications and your most recent treatment letter from your specialist with you.

The recovery pathway (a progression of the disease) is classically through a series of horrible flares which come and go. We all go through this. When you are in treatment, each successive flare is progressively milder and you may notice over months you will drop a symptom each time you flare (maybe there will be less pain and the flow will be better but the urgency and frequency will stay and then they will slowly go and the last symptom may be, say, burning, or itching inside the urethra). If you weren't being treated the same ups and downs would be experienced, but maybe each time you flare it will feel worse and worse as it progresses rather than slowly better. It is thought that the reason it comes and goes with "break through flares" is because the bacteria get released when the bladder changes its lining and "spits them out" from inside the bladder wall cells.  This can be a natural shedding which the bladder wall does as well as provoking the bladder lining though sex, exercise or eating inflammatory foods. The bacteria are released into the bladder becoming planktonic (active) and the immune system goes on alert and causes all the symptoms. Also, the bacteria release toxins as they die causing more inflammation. More pain = bacteria crying. 



Amandacc

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Posts: 9
Reply with quote  #7 
Thanks for the replies, i have been taking the Nitro and did email the professor who told me to carry on as mentioned above re; dogged persistence. I will be starting the hiprex this friday so will see how that goes. The pain is manageable at the moment even though it is still there i am finding antihistamines most helpful, thanks to this forum and bladder health as i would never have dreamed of using it for pain relief! Also getting out and about and not letting it beat me! Luckily nitrofurantoin hasn't ever given me thrush so hopefully it wont now. I have been taking a probiotic between ab doses hopefully this is helping too.
I have gone from no drugs at all (i dont even drink!) To feeling like i rattle when i walk😂

Amanda x
JaneG

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Reply with quote  #8 
Hi Amanda,

Glad things seem to be going a little better for you. I also use antihistamines, and have been for two years since this condition first began. I find I can only us them at night as the ones that suit me in most ways also make me sleepy. But I do get a good night's sleep and hardly ever have much pain at night. When I had my first appointment with the Professor I checked that it was OK to continue using the antihistamines and he was absolutely ok with that for me. 

I do know exactly what you mean about rattling around - I also hardly ever took any drugs at all before this and like you I don't drink either. But I am hopeful that its going to be worth it!

While we each have our own situation and details of treatment and reaction, it does help to know we are not alone!

Regards,

Jane x




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