antibiotic resistant infection

[jenny39]

Hi everyone I have been ill for last 10 years with an original diagnosis of ME, I had been tested for loads of other things over the years and main symptoms where ENT infections and neurological. I was already under a London neurology hospital for epilepsy and they couldnt tell me what was causing symptoms and I got a referal last yeaar to see a neuropsychiatrist. Whilst waiting for this appointment I had an ear infection flare up and after a course of antibiotics I went back to my GP who for the first time took an ear swab and when results came back I had an antibiotic resistant infection pseudomonas aeruginosa and was given a course of ciprofloxacin for 7 days. After taking these I could notice big difference in neurological symptoms but was refused any more from gp because of drug resistance yet they handed other ones out like smarties prior to this.

I then took a visit to my local A&E who gave me a ten day course to get on top of it again I have noticed big improvements but still had some nerve inflammation. I went and saw the neuropsychiatrist who was shocked when I said I had a drug resistant infection but she still wants to see me again in a few months. I then had another flare up of ears and got some ear drops off my new GP after having to change as old GP refused to treat anymore. After about three months I got a 3rd course of cipro from new gp as I had brain stem inflammation felt like it was on fire and this went with the ciprofloxacin. I went to see the ENT about 4 weeks after taking this dose and she refused to believe the two were related and put the neurological symptoms as something else but told me to get myself tested for diabetes as it in my family and I know my immune system not compromised because of this. I also had sinus and throat infections throughout.

I have emailed my neurologist and see him in 4 weeks but am wondering if some people could have an antibiotic resistant infection without realizing.

I am trying to get another dose of ciprofloxacin as I still have some nerve inflammation in arms and legs. I have had no life last ten years when all I needed was an antibiotic. Has anyone else here had anything similar?

 

[xrunner]

Has anyone else here had anything similar?

Strictly not similar but perhaps related. I used to suffer from severe anxiety, insomnia and some neuro symptoms associated with Bartonella and Borrelia. All of such resolved after appropriate abx treatment for Lyme disease.

Ideally you'd want to understand what infections may be causing your neurological symptoms, whether the pseudomonas aeruginosa or other.
Bartonella henselae, a co-infection in Lyme disease, for e.g. can cause neurological symptoms and is treated with the same class of abx you benefited from but over several weeks. It's typical of Bartonella that neuro improvements tend to come through quite rapidly as you experienced.

was refused any more from gp because of drug resistance

this is more likely from insufficient treatment rather than from "over treating"

if some people could have an antibiotic resistant infection without realizing.

Quite a few people initially diagnosed with ME have found they needed treatment for Lyme and/or other chronic infections. If you just check the Lyme forum ...
The problem is getting access to in-depth testing and a Lyme literate doctor which in the UK is not easy and the only place I know is private. The alternative is to go abroad as some people here are doing.

If you want more info about Lyme diagnosis and treatment pls see the following doc
http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf

Best wishes.

 

[ahmo]

I researched alternatives to Cipro for my DH w/ pseudomonas in ear. Here's a list of references I found. Before you invest too much energy in getting Cipro, I'm also linking some sites re the problems it can cause. I don't know if it needs to be long term before it causes problems with tendons, etc. Hope you get help with your infection. DH eventually needed surgery for brain abscess after long-standing infection. His case was caused by radiation to the bone in that area, which is a compromised system you don't have.



http://curezone.org/forums/search.asp?q=pseudomonas&f=762&t=0&p=2

Multidrug-resistant Pseudomonas aeruginosa and Acinetobacter bauman... - PubMed - NCBI

http://www.ncbi.nlm.nih.gov/pubmed/20014903

Drug Resistant Streptococcus? Try the Drug-Free Approach

http://www.ent-consult.com/resistantstrep.html

Pseudomonas Control | LinkedIn

http://www.linkedin.com/groups/Pseudomonas-Control-4305665

Colloidal Silver and Pseudomonas Infections

http://www.thesilveredge.com/pseudomonas.shtml

http://www.townsendletter.com/Jan2015/silver0115.html

The Antimicrobial Activity of Selected Silver Products by Robert Rowen, MD; Dennis Harper, DC; and Richard Robison, PhD

http://www.buhnerhealinglyme.com/ Book includes herbs for antibiotic resistance

Yeast Infection Advisor http://www.yeastinfectionadvisor.com/index.html



Drug Rep Exposes Antibiotics: Risks Outweigh Benefits, You Have Alternatives » | ThePeoplesChemist.com

http://thepeopleschemist.com/drug-r...isks-outweigh-benefits-you-have-alternatives/

Links & Resources | Floxie Hope http://floxiehope.com/fluoroquinolones-links-resources/

Resources - Quinolone Vigilance Foundation http://www.saferpills.org/resources/


Surviving Cipro - Three Things that Worked for Me | Surviving Cipro

http://www.survivingcipro.com/useful-information/three-things-that-worked-for-me/

 

[jenny39]

Thank you I have a look through these tomorrow.

this is more likely from insufficient treatment rather than from "over treating"

Thats what I thought myself but GP said no so had to go to a new GP. I currently have a solicitor involved due to misdiagnosis and refusal to treat.

I just have some nerve pain left over but last had a course of cipro about 5 weeks ago so chance I sttart to get fatigue parasthesia headaches come back.

I see a neurology professor next week for epilepsy but they kept quiet due to misdiagnosis so be interesting what they have to say. I keep you updated.

 

[jenny39]

I had my last appointment with my neurologist who has now admitted that the pseudonymous has been the cause of my neurological symptoms and caused sclerosis of hippocampus and epilepsy. So I had meningitis from it he also disagreed with the ear nose throat hospital who I have now emailed and told them to contact my neurologist for his opinion. I previously had brain surgery for epilepsy and had part of hippocampus removed the seizures stopped but returned when I became ill again but as I am on epilepsy drugs I wasnt having seizures where I was losing consciousness.

I got my letter back from hospital and neurologist put he thinks infection may be cause even though at appointment he said it is cause. I think they trying to cover there own backs in case I take it for medical negligence. I not got a chance there as already tried a few solicitors who won't take case on as so complicated with my history.

 

[xrunner]

Hi @jenny39
I'm sorry to hear about all the troubles the you've been through due it seems to medical incompetence/negligence. I hope you may eventually find the legal help you need and justice.
I also hope they'll now consider giving you the appropriate treatment you need for your recurring infection. In any case you may want to have a look at Hypothiocyanite which is said to be effective against Pseudomonas aer.
https://en.wikipedia.org/wiki/Hypothiocyanite

It worked well for me (not against pseudomonas) and my dad (staph abx resistant infection).
There's also an encouraging study on patients with cystic fibrosis although here it was administered just by inhalation.
http://www.ncbi.nlm.nih.gov/pubmed/25213272
Best wishes.

 

[ukxmrv]

Jenny, I just wanted to say (belatedly) thank you for sharing your interesting story. I have had repeated sinus infections and now they are inclusing my ears. I am under the care of a ENT doctor. Although I have had repeated doses of AB's the infection lingers and I am trying to keep it under control with nasal washes with an irrigator. This does work for portions of the year quite well but if I pick up a cold or flu it takes off again.

Not sure if we were seen at the same Neurology Hospital but I was seen at Queen Square and the treatment there was atrocious. I have ME but on top of that had serious injuries from a road traffic accident. The Queen Square Neurological Hospital made light of these injuries and refused any physical investigations. They wanted to fob me off on a Neuro-psych and concentrate on my pre-existing and completely different ME symptoms. I made a formal complaint to them but the doctor involved had left by then.

 

[jenny39]

Jenny, I just wanted to say (belatedly) thank you for sharing your interesting story. I have had repeated sinus infections and now they are inclusing my ears. I am under the care of a ENT doctor. Although I have had repeated doses of AB's the infection lingers and I am trying to keep it under control with nasal washes with an irrigator. This does work for portions of the year quite well but if I pick up a cold or flu it takes it off again.


Not sure if we were seen at the same Neurology Hospital but I was seen at Queen Square and the treatment there was atrocious. I have ME but on top of that had serious injuries from a road traffic accident. The Queen Square Neurological Hospital made light of these injuries and refused any physical investigations. They wanted to fob me off on a Neuro-psych and concentrate on my pre-existing and completely different ME symptoms. I made a formal complaint to them but the doctor involved had left by then.

Yes the hospital is the National hospital for neurology, I have been under there for the last 23 years for epilepsy and previously it has been a great hospital over the years but when you have something else on top and are refered back there they seem to just refer you to the consultant you are under originally. I said from day one I am sure that whatever is causing these ear infections has something to do with it. As for the referral to the neuropsychiatrist I would take the appointment if you really think it neurological as the doctor I have been seeing has also said at my latest appointment that she can see big difference in me since I last saw her 8 months ago and I had 3 more weeks of antibiotics since that appointment. I was also asked do you think the pseudomonas is the cause to which I said I know what I believe but you are the doctors not me. I able to walk alot further then I was but I over do it my nerves are on fire for days. The neuropsychiatrists are at the homeopathic hospital next door to great ormand street hospital The Royal London hospital for Integrated medicine and believe this is where ME patients are refered to. I am back to volunteering work 1 day a week due to ESA wrag group and after antibiotic was able to walk about 7 miles after trip with work colleagues but suffered for days after so she could see I wasnt not wanting to do anything. My nerves are firing away for days after and will struggle to walk again this has only got like this since getting antibiotics as my infection been left for so long this is now probably permenant.

Are you still under the national hospital?

Are you under greys inn rd ent hospital also?

 

[jenny39]

https://microbewiki.kenyon.edu/index.php/Pseudomonas_aeruginosa_infection#Central_Nervous_System

 

[South]

@jenny39 Olive leaf extract kills pseudomonas:
http://www.drugs.com/npp/olive-leaf.html

 

[jenny39]

@jenny39 Olive leaf extract kills pseudomonas:
http://www.drugs.com/npp/olive-leaf.html

Thanks South I will have a look into that.

 

[jenny39]

I just wanted to say last week I had to go to hospital due to relapse and I saw a doctor who seemed to know what he was talking about for a change. I had severe nerve pain and exhaustion and knew I needed a course of antibiotics but seeing the right doctor that will prescribe them has been difficult for me. He straight away told me about ways pseudomonas aeruginosa is picked up and said for me to have an internal infection I must of picked it up from something like an operation so I explained that after an endoscopy I had my appendix out at the same hospital in 1999 and had an intestinal obstruction and had to have a urine catheter then picked up cellulitus but no one could tell me what caused it. The doctor said that must of been what has caused it if I had cellulitus this would of been when I got the infection. It makes more sense then an ear infection as I had urinary tract infections nerve pain across back change in epilepsy after being seizure free for few years after surgery this made more sense that it spread up spinal chord. I also read another patient who picked it up in hospital through endoscope who managed to sue for 600,000 shame legal aid been stopped in this country. I mentioned this possibility a few months ago to my neurologist but he wouldn't say yes it possible wouldn't even put in writing that pseudomonas was cause of infection.

If I have an internal infection what now would be best thing to get rid of it naturally as these antibiotics tend to last about 5 months at most before infection comes back.

 

[Uno]

I have PSC (primary sclerosing cholangtis) and have recurrant bacterial cholangitis. Nothing to do with ME but I am antibiotic resistant and need IV antbiotics every so often but the infection quickly turns into sepsis - I've nearly died three times because the antibiotics didn't work. It's really frightening to be told you are antibiotic resistant. I know I only have a limited time left because one day this infection will get me but in the meantime I am working on my charity and trying to live life (from my bed!!!). Good luck Jenny - I will pray for you and wish you all the best.

 

[jenny39]

I have PSC (primary sclerosing cholangtis) and have recurrant bacterial cholangitis. Nothing to do with ME but I am antibiotic resistant and need IV antbiotics every so often but the infection quickly turns into sepsis - I've nearly died three times because the antibiotics didn't work. It's really frightening to be told you are antibiotic resistant. I know I only have a limited time left because one day this infection will get me but in the meantime I am working on my charity and trying to live life (from my bed!!!). Good luck Jenny - I will pray for you and wish you all the best.

Hi Uno

Sorry to hear you are ill, was you diagnosed with M.E in the beginning? I am just glad to get to bottom of it. I get about 3_4 months out of a course of antibiotics and am now looking to see if anything else will work. I can't believe all the doctors I saw no one could diagnose me yet it is apparently 3rd most common hospital infection. Is there any alternative treatment you can try. One gp told me after 1st course it's tough it something you have to put up with and got turned away by one doctor at hospital and told to go back to my gp. Luckily I changed go got another course and saw a good doctor at hospital and got another course but next time I might be turned away again. I hope you can get some treatment also wish you best and will also pray for you and everyone else on this forum either suffering from m.e or some other misdiagnosed condition. X