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dragonfly

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Posts: 15
Reply with quote  #1 
Hi All,

i was hoping someone in here can help me with some information.

i am currently a patient of the Professor but i have relocated to the US - more specifically DC, Virginia, Maryland area. 

I was wondering if any of you would know any doctor in the area that has a similar thinking to the Professor. I want to continue treatment with the Professor but i need to have a local doctor that prescribes the abx for me with the Prof guidance of course.

I have seen a couple of doctors but none of them seemed interested in hearing about the Prof way of treatment.

I know Ruth is someone that some members have had experience with, but i am not quite sure she is what i am looking for. 

I really want to continue the treatment i am in, and just need a like minded doctor like the Professor. Does not have to be a specialist - even it is a primary care doctor, is fine. really just need someone to fill in the prescriptions. 

If anyone has any info, would really really appreciate it.

thanks so much

d.  
ModeratorKate

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Posts: 1,600
Reply with quote  #2 
Hello dragonfly,
Here are couple of suggestions that may help.
These clinics based in USA( Info taken from the BHUK website)

Interstitial Cystitis Association (ICA)
100 Park Avenue, Suite 108A
Rockville, MD 20850 USA
Tel: 800-HELP ICA (800-435-7422) 
http://www.ichelp.org
ICAmail@ichelp.org 

Interstitial Cystitis Network ICN (National)
4983 Sonoma Highway, Suite L
Santa Rose, CA 95409, USA
Tel: 1-707-538.9442
http://www.ic-network.com 
jill@ic-network.com

Also please contact the BHUK Office 0121 702 0820 .

Also ask the Profs secretary, if she has any recommends for you.

Do please let us know your journey as now with so many Members World wide, any information will be a help for others looking in

Kate


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Anais

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Posts: 5
Reply with quote  #3 
I would be interested to know why the US doctors don't agree with the Prof's treatment . Do they have a magical cure to this very stubborn ailment?
dragonfly

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Posts: 15
Reply with quote  #4 
thank you Ladies. will keep looking and let you know if i find anyone.
Anais, the issue is that none of the textbooks or health guidelines prepare doctors for condition like ours. I don't blame them to a certain extent. It is something that no one taught them how to handle or that we are even suppose to have this condition. Luckily there are a few like Prof that have taken a step further in acknowledging our condition and addressing it. 
dragonfly

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Posts: 15
Reply with quote  #5 
ModeratorKate, it is interesting that the guidelines of the ICA state: Do not use long term antibiotics!
argh! 
ModeratorKate

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Posts: 1,600
Reply with quote  #6 
Hello dragonfly
Yes it is confusing, and as we always say we are also different, presenting different symptoms, and then when one treatment works for one person it can be a nightmare for others.

You will find much to read through here on the forums here are just two threads, scroll up or down for Moderator Susans replies.

http://cobf.websitetoolbox.com/post/just-started-treatment-with-dr-a-8374617?trail=15#11
http://cobf.websitetoolbox.com/post/getting-a-referral-to-professor-ml-8385254?trail=15#2

Hope  this helps, also the Biofilm pack is available Members of BHUK at the Office.

Will also try to find link to the Prof talking to the Media .EDIT
Still on BBC I player
http://cobf.websitetoolbox.com/post/leading-london-professor-on-womens-hour-on-monday-8292053?pid=1293883497

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Kimberly

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Posts: 61
Reply with quote  #7 
Hi I'm not sure if you've tried this, but the Prof has a document outlining their theory and approach (I'm sure if you just ask they'll email it to you). If you share this with doctors you see in the US it could be more compelling than just how we as lay people would explain it. And stress that no matter what they think the abs are the only thing that have improved your symptoms. Do your graphs show good results from the abs. You could try showing those too. And mention the work MPs are doing in Parliament plus the media campaign regarding inadequate urine testing.

Obviously you still need to find someone willing to listen, but this kind of evidence may be more persuasive to them in terms of giving you a prescription. Just an idea...
Kimberly

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Posts: 61
Reply with quote  #8 
And I've been told by a doctor in the US that most common abs the Prof prescribes would never be used for serious reasons such as post surgery and there are other options. I found that reassuring on the resistance front.
Kimberly

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Posts: 61
Reply with quote  #9 
You have to take the positives you can right!
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