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ginny

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Reply with quote  #46 
Best to ask this question on another forum, this is the place where the members go for doctor information. Try the Adult or Main Forums for medical information. Good luck.
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ginny CVSA Moderator
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wynnak

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Reply with quote  #47 
Quote:
Originally Posted by Shannie831
I am currently living in Seattle/ Tacoma area. My MD, Dr. Allison Odenthal, at MultiCare. She is a CVS believer. Any person in Washington drive to Tacoma and see her. I am moving and looking for a MD in the California Sacramento/ Bay Area . Help.


There is a Doctor that works At Kaiser in Sacramento listed here on the Website that "specializes" in CVS. Depending on your insurance, etc.. I have put in a previous post regarding Doctors and Care for My Teen CVS'r. I am not sure if you are looking for yourself or for a child. But we Drive to San Francisco. We were actually just informed that our FAVORITE doctor is leaving to go to LA, but we have worked with a team of doctors there and Due to the severity of my son'd case, he is a case study. IF it wasn't for UCSF, I do not think he would be with us today. SO... I send everyone there. PM me if you would like to discuss it more.

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Blynda
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conery

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Reply with quote  #48 
Is there support in Michigan, possibly near Detroit not only for adults but long time CVS adults now in their 70's  and finding long terms effects of a liftime with CVS.
I am one of them, have a very active and thriving life but am challenged on many fronts due to CVS.I would like to be in a resaech study in vie of my life with CVS having been born with it.
Just joined here as as on CVS forum in the eerly 21st c. and am now back.
thanks,
Michele Birch-Conery
Windsor, Ontario  Canada

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mbconery
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KathyF

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Reply with quote  #49 
My son takes it as part of his abortive protocol. We haven't had much luck aborting his episodes though. If he has a regular migraine without the vomiting, it does work for that.
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Chelle

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Reply with quote  #50 
I found another gal from MI while at the CVSA Conf. and she is North of Detroit and she is looking to build up more support in MI.  I am from the SW part of MI, I have a 11yr old son that is a suffer.
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Chelle
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DanaScully

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Reply with quote  #51 
Chelle, I'm in South Haven Michigan and I suffer from CVS also and right now my stupid NO Brain gastro Dr by the name of Dr. Dewan wants me to come into his office and talk to him about my liver and he wants me to go 3 days without taking my birth control pills due to my cysts on my left ovary well my OBGYN told me not to worry about them they will go away and now this BS I can't do another 7 years of the same medical testing I ONLY have my left ovary after that I will go into menopause at the age of 33 (I'm not 33 yet on Sept 1st I will be ) I just wish I could get a freaking break from all of the medical testing and the puking my guts up!!!  To my doctors I am their little lab rat that they can do tests on whenever they freaking want to do them!! sorry to vent this all out but I am FED up with being a medical pin cushion!!!
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teachmom

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Reply with quote  #52 
My son went to Dr. V a few months ago. She wanted him to try amitriptyline. I can't say it is helping very much, and he is having a hard time tolerating it. Then we spoke with Dr. Boles during the speed dating at the conference. Dr. Boles thought Brian would be a good candidate for testing. However, Dr. V won't give us the referral. Brian has been a long time migraine sufferer, but was diagnosed with CVS two years ago (at 21 years of age). We have not been able to find a specific "trigger". Brian is sick again and he noticed it began when he started sweating for no reason, then headache, then vomiting. then increased heart rate. I'm not sure if we should see a neurologist (although we went to one who really was not helpful) or a GI specialist.  Has anyone been to Cleveland Clinic or Mayo? Seems like maybe it is his nervous system. Does anyone else notice that the episode begins with sweating? I'm asking a lot of questions, but I'm just frustrated. Brian just went through a 4 day episode two weeks ago, now he is sick again.
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Sue Rohde
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Nelsonfamily

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Reply with quote  #53 
Is there anyone who may have a Doctor contact in Western Canada? Preferably in Calgary or Edmonton AB?
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ginny

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Reply with quote  #54 

Please contact Ruth at the CVSA office for the list of CVSA MDs.  

cvsa@cvsaonline.org

I have tried to respond to your PMs but the respond function is turned off.  Thank you for updating me!



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ginny CVSA Moderator
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Nelsonfamily

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Reply with quote  #55 
Oops thank you. I did that and have received the list already. Thank you <3 I've fixed my settings now thx for telling me.
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cphelan

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Reply with quote  #56 

I want to find a Doctor in Atlanta, GA that has experience with CVS.  

My daughter's current GI specialist wasn't aware of Dr. Boles research on using CoenzymeQ10 and L-carnitine.  When I brought it up, he researched the dosage and called me with it.  My concern is that he didn't recommend measuring her current levels of CoQ10 in order to track them as she begins this protocol.  It makes me want to find a Doctor in the area that is more familiar with the most up to date treatment options.

I came across Dr. William Meyers at GI Care of Atlanta.  Anyone else with CVS in Atlanta with a doctor recommendation?  BTW, the Atlanta Pediatric doctor on the CVSA Recommended Doctor list is no longer working with CVS patients.

Thank you<

Cindy

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ginny

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Reply with quote  #57 
Hi Cindy, I don't know how many doctors measure the CoQ10.  We have a former mom of a CVS son whose granddaughter has total Mitochondrial Disease, not disorder.  She is on CoQ10 and L- Carnitine.  She is in the Atlanta area.  I will find out who she is seeing.  My granddaughter is mito kid and she has not had blood levels taken, at least that her mother has mentioned.

Please email Ruth at cvsa@cvsaonline.org for a current list of doctors in your area. Your doctor can also call Dr. Boles, he would welcome discussing how he goes about things or call Dr. Li.

Good luck!



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ginny CVSA Moderator
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cphelan

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Reply with quote  #58 

Hi Ginny, I would love to find out who your granddaughter is seeing.

I have gotten the ATL list from Ruth.  The Pediatric doctor on the list is no longer seeing CVS patients.

Thank you,

Cindy

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lindapre

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Reply with quote  #59 
I live in New Mexico and searching for a CVS believer. Anyone have any sugestion?
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Linda Prefontaine
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ginny

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Reply with quote  #60 
Linda, contact email Ruth at the office for a current list of doctors in your area.  You can reach her by leaving a telephone message if the office is closed or by emailing cvsa@cvsaonline.org
Ask Ruth for a patient pamphlet.

Good luck, I hope there is a great doctor in your area.

You can also ask your own doctor, an internist, GP, FP, GI, etc., to contact one of the CVSA Medical Advisors for suggestions and help.   For an adult most will contact Dr. V, her contact information is on the CVSA Web Page.

Your doctor can also contact CVSA and request a professional pamphlet.  





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ginny CVSA Moderator
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