Hurry Up and Wait - A Taste of My Own Medicine

I really hate this.

I've been spending weeks reading and asking questions and reading and asking questons and being deliberate and careful and now that we want to push the button and run, we get bottlenecked with this whole medical community fear of the legal system.  I get it, I explained this to my GP this week and he said it's all about getting sued.

I truly understand that there are 3 ways to do this.

1) You have a doctor in your family

2) You find a doctor that is willing to break with medical procedure

3) You go somewhere like Vanderbilt that has a medically accepted process for doing this.

We don't have 1 and really want 3 and would rather not go with 2.  But, I'm open to anything.

I want to find a doctor that is local in Northern Virginia.  If not the Pittsburgh area would be good.  Then after that something in the Washington DC area.  We want to find a place like Vanderbilt we can get into sooner (Kim's having an exaserbation now) if at all possible.  We are trying to get copies of Kim's records from her doctor now too. 

Has anyone found a doctor around here or a center that is doing this, here?  If we go with option 2 does that get in the way of working out option 3 later?  If we can convince Kim's Neurologist to give her Minocycline now, should we take it?  Does NIH or John's Hopkins or Georgetown do antibiotic treatment like Vanderbilt?

Hey, for fun, I'm decorating a 30 ft pine with lights, I hope we get snow.

Ken

 

 

 

Ken, I know you're doing that tree in all the spare time you have. (What, like in your sleep???) Good grief, man, please remember to take care of yourself, too. Just sent you a pm over on ThisIsMS.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

One of us will send you a list of possible doctors in VA.  

The other possibility is to get a local doctor to speak to doctor Stratton at Vanderbilt.   It's probably the best option because you will not have to travel a long way to get a consultation, and both you and the doctor will be confident that the treatment you are following is sound and supported by good science.  

Michele (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Ken, first if you can get your neuroi to prescribe minocycline for Kim it is a start and one that should do a lot of good.  That will give you time to think.  Have you tried to contact Sriram at Vanderbilt, like Loriyas did?  There is a neuro at John Hopkins who prescribes in a small, somewhat insecure way, but seems to rely a lot on what patients know, but you can know a lot, with all the work you have done on your handbook.  PM Arttile and ask her advice.
  
Next, take MacKintosh's advice and look after yourself as well as Kim and Jacob.........Sarah      
  
An Itinerary in Light and Shadow  
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hey Ken,  I hold with you that the state of the medio-legal difficulties in this land are a huge disservice to both the medical profession who cannot use the top knotch educations that they have earned because of fear of litigation.   And better you to say this than I.  

If it were myself and I needed what you folks need I would Personal Message Loriyas and i would get on the wait list for Vanderbuilt while continuing to look for other options.  Recently, I waited 2 months only to be disappointed with the interactions of the visit.  Once you are satisfied with your provider (when found) responsibly cancel your Vanderbuilt appt., if not satisfied keep it.  There will be someone ready and willing to take it if you choose to let it go. Just my humble opinion.  Louise

Louise CFSi. CPn posititve, Bb(Borrelia B.)positive. CAP 6/24/07 Initial Doxyi and NACi started.

10/31/07 Macrolide Abxi. added to Doxy and NAC.

11/3/07 Doxy 100mg BIDi, Macrolide 150mg BIDi, NAC600mg BID

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <
Ken
Make arrangements right now to get an appointment at Vanderbilt.  You may have to wait a couple of months to get in.  Then get a local physician to prescribe minocycline.  Get Kim started on NACi if you haven't already.  Then you will at least be started and have gone through any side effects before you go to Vanderbilt to get on the complete protocol.  You can't start the whole program right off the bat anyway-you have to work your way up.  By starting with the mino and NAC you are already getting going.  But you are wasting time by looking for someone to do this when you already know who will.  If, in the meantime, you do find someone, you can cancel the appointment at Vanderbilt, if you want (although I would still go if I were you).

If Kim is in the middle of an exacerbation right now she will probably need Solumedrol to bring it down.  That's something that can be done immediately.

Stop talking about it and do something!  It is very very important!  (Sorry if I sound too abrupt but the sooner you get going the sooner Kim will be feeling better-maybe not right away but soon)

PM me if you'd like

Lori



Minocycline 100 mg QDi, NAC 400 mg QD, vitamin B12 injection weekly, varous supplementsi, anxiously awaiting appointment at Vanderbilt Dec 17 so I can get started on full protocol.
 
Started Vanderbilt protocol 1/9/08  Rifampin once a day, b12 injection monthly , vitamin Di 50,000 IU weekly

Hi Ken,

 

I e-mailed Dr. S to let him know that I referred you to Dr. B. Haven't heard back, but will let you know if I do.

 

--Minai

 

RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

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