Vanderbilt

A forum for the discussion of antibiotics as a potential therapy for MS

Vanderbilt

Postby gwa » Thu May 24, 2007 8:06 am

I am just curious if anyone here has gone to the Vanderbilt clinic for testing and therapy for the ABX's.

Seems like it would be easier to work with doctors familiar with the protocol than to educate another, perhaps unbelieving, physician.

gwa
User avatar
gwa
Family Elder
 
Posts: 846
Joined: Thu Dec 01, 2005 4:00 pm

Advertisement

Postby SarahLonglands » Thu May 24, 2007 10:31 am

Vanderbilt, being a University is mainly involved in teaching and research, which includes various trials. Other than this, Charles Stratton and Ram Sriram do treat a number of people on a compassionate basis. Stratton treats more second hand by working with their GPs.

In the UK anyone with a diagnosis of MS can email my husband and ask for an appointment. Quite a few people both here and on CPn Help are seeing either Stratton or Sriram in the States or David in the UK.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
Family Elder
 
Posts: 2111
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

ABX

Postby gwa » Thu May 24, 2007 10:50 am

Some of the comments posted on this forum have given me the idea that the ABX's are best used in patients that have not had the disease for a long time.

Is there a year time frame that is best, i.e. 1-10 years? Have there been any success for people that have had MS for over 3 decades?

This discussion has intrigued me because I may have had walking pneumonia several months before I was diagnosed. However, at the time I was attending college full time and didn't take the time to go to the doctor to find out what was wrong even though I coughed a lot.

gwa
User avatar
gwa
Family Elder
 
Posts: 846
Joined: Thu Dec 01, 2005 4:00 pm

Postby SarahLonglands » Thu May 24, 2007 3:09 pm

Hi GWA, I can't lay claim to thirty years, but I did develop MS at 24 and it became aggressively progressive in 2001. I started treatment in 2003 at the age of 44.

Rica (Katman) started treatment at 63, less than a year after me.

Depending on your deficits, you should at the very minimum be able to stop progression, but most people get far more than that. Someone who has only had the disease a few years is likely to end up with nearly no deficits, yet someone with progressive disease will now sooner that something is happening, because you know when progression has stopped, whereas someone with RRMS might have to wait ages before they know that a relapse is long overdue.

CPn has only been recognised as a pathogen since 1988, so even if you had gone to the doctor whilst at college you would not have got any furthrer. You live in London, don't you? Why not write to David to ask him about it. Address at the bottom of this page:
http://www.davidwheldon.co.uk/ms-treatment1.html

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
Family Elder
 
Posts: 2111
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby bil » Fri May 25, 2007 4:13 am

Anecdote wrote:In the UK anyone with a diagnosis of MS can email my husband and ask for an appointment. Quite a few people both here and on CPn Help are seeing either Stratton or Sriram in the States or David in the UK.

Sarah


Hi Sarah,

where is your husband based? I see you're in Bedfordshire, my wife is currently in Peterborough seeing her parents which I think is nearby? (Geography of S. England not my strong point :) )

I'm thinking of trying to persuade her to talk to your husband, I'll talk to her later and see if she'll email him?

Thanks
Billy
User avatar
bil
Getting to Know You...
 
Posts: 19
Joined: Thu May 10, 2007 3:00 pm

Postby SarahLonglands » Fri May 25, 2007 4:40 am

Hi Bill, we are actually in Bedford itself, somewhat to the north of the county, less than thirty miles from Cambridge. Peterborough is quite near to Cambridge, isn't it? (Actually I'm a native Bristolian, from the other side of the country) David is a consultant in microbiology at Bedford General. If you wife is reluctant to email David, she could always email me first, address on my website: http://www.avenues-of-sight.com, but the lab has just got very high marks in the its re-accreditation, scoring especially highly with how helpful it is, to medics, patients and the general public alike.

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
Family Elder
 
Posts: 2111
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby gwa » Fri May 25, 2007 7:49 am

anecdote,

We live in the middle of the USA. We had lived in Mildenhall and Newmarket, outside of Cambridge, UK for about 4 years at one point in my husband's career.

I am going to get more info about the doctors at Vanderbilt and see if my insurance will cover a visit to them.

My current GP wants me to go to see a neuro in Oklahoma City that she works with because I haven't been to a neuro since 1987 or so. It seems like a waste of my time to go there to me because I know that there is nothing they will do for a SPMS patient.

I will send your husband an email soon and maybe he could shed some light on whether the meds might be a possibility for me.

Thanks for the info.

gwa
User avatar
gwa
Family Elder
 
Posts: 846
Joined: Thu Dec 01, 2005 4:00 pm

Postby SarahLonglands » Fri May 25, 2007 8:10 am

Sorry, I was mixing you up with someone else! If you want to investigate Vanderbilt, Charles Stratton, who is a microbiologist or Ram Sriram a neurologist are the people you want see. If you type their names plus Vanderbilt in Google, their contact details show at or near the top. Ram is Subramaniam Sriram.

Perhaps your GP would be willing to work with Charles Stratton if you insurance won't cover a visit.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
Family Elder
 
Posts: 2111
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby gwa » Fri May 25, 2007 8:38 am

anecdote,

Just checked and my insurance does cover DR. Sriram, so I could go there and not have to worry about footing the bill.

My insurance doesn't require that I have a referral from a GP to see a specialist , so I will probably make the appointment myself.

Now I am going to do more reading about this treatment. I have not paid a lot of attention to the ABX thread because I thought it was more for people just starting out with MS, which knocks me out if that is the case.

gwa
User avatar
gwa
Family Elder
 
Posts: 846
Joined: Thu Dec 01, 2005 4:00 pm

Postby havingms » Fri May 25, 2007 9:09 am

Gwa, Please keep us posted with you experience and process. There are many of us looking to go down the same road with the ABX.
Thank you
K
User avatar
havingms
Family Member
 
Posts: 38
Joined: Wed Feb 21, 2007 4:00 pm

Postby SarahLonglands » Fri May 25, 2007 10:41 am

The main trouble with this treatment at the moment is the lack of people providing it. Stratton and Sriram at Vanderbilt are employed by the University as teachers and researchers so this has to take priority for them. In this country, my husband David is employed full-time by the national health service, so his hospital duties likewise have to take priority.

The best thing about all this is that you don't need a neurologist to prescribe antibiotics, just a doctor who thoroughly understands them. For this reason, Charles Stratton is willing to work with someone's GP, to advise and give information about treatment. In this country, David does a similar thing and it works very well, because it is far easier to see your GP when you need to rather than try to make a neuro appointment at short notice.

I wish you luck, gwa, with making an appointment nd I hope that before long there will be more people doing this.

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
Family Elder
 
Posts: 2111
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby gwa » Fri May 25, 2007 11:33 am

Dr Sriram is listed in my preferred providers index, so I should be able to make an appointment with him without going through my GP.

My GP is an internist with little knowledge of MS, which is why she wants me to go to Oklahoma City to see a neuro that she knows. I believe that if I approached her with the pneumonia topic that she would still want me to go to Oklahoma City.

She is not my favorite physician of all times, but I am living in a little town and there are not a lot of good doctors for me choose from while we are in this location.

I will keep in touch. If the treatment worked for me, we would just move to Nashville next year when my husband retires.

gwa
Last edited by gwa on Mon May 28, 2007 3:53 pm, edited 1 time in total.
User avatar
gwa
Family Elder
 
Posts: 846
Joined: Thu Dec 01, 2005 4:00 pm

Postby SarahLonglands » Fri May 25, 2007 3:11 pm

She sounds like my GP, lucky I have David as well! :wink:
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
Family Elder
 
Posts: 2111
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Re:

Postby PrairieKari » Sat Apr 28, 2012 4:13 pm

Anecdote wrote:Vanderbilt, being a University is mainly involved in teaching and research, which includes various trials. Other than this, Charles Stratton and Ram Sriram do treat a number of people on a compassionate basis. Stratton treats more second hand by working with their GPs.

In the UK anyone with a diagnosis of MS can email my husband and ask for an appointment. Quite a few people both here and on CPn Help are seeing either Stratton or Sriram in the States or David in the UK.

Sarah

Hi Sarah - do you know anyone in Canada that is well versed in this protocol or is it best to go to Vanderbuilt?
PrairieKari
Newbie
 
Posts: 1
Joined: Sat Apr 28, 2012 3:54 pm

Re: Vanderbilt

Postby Loriyas » Sun Apr 29, 2012 6:25 pm

gwa-I see Dr Sriram at Vanderbilt. He has treated me with antibiotics for the past 4 years. I have kept a log of this on this thread so if you would like to see my journey you can read about it. You can also send a pm to me if you like.
Loriyas
Family Elder
 
Posts: 594
Joined: Sun Apr 02, 2006 3:00 pm
Location: Naples, FL

Next

Return to Antibiotics

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service