Interviews needed re: Chronic Lyme Disease Experience

Interviews needed re: Chronic Lyme Disease Experience

I am sharing (with permission) this request I recently received. Hopefully we can help our cause from another angle…objective research. The request came to me as follows:

My name is Victor Fontaine and I am a candidate for the Masters student in Global Innovation Management at North Carolina State University. 

I am currently working on an academic project with two other students over the course of the semester, where my goal is to better understand chronic Lyme Disease, Fibromyalgia and its treatment, specifically where diagnosis and treatment fail.

I am very interested in learning about this from a patient’s perspective, if anyone would be willing to speak with me. This is for an MBA level class, so the goal for this class is to understand the customer needs and wants, unbiased.  This means that we would not try to sell you anything, and that you will remain 100% anonymous should you choose to help us. We need to hear from roughly 20 people, so if you or someone you know would be willing to talk to us, please let me know. 

If you have any questions before committing please don’t hesitate to ask.

Victor Fontaine <vpfontai@ncsu.edu>

My interview is next week – I encourage anyone who has the energy to participate so this young man can put together a compelling research paper!

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15 Responses to Interviews needed re: Chronic Lyme Disease Experience

  1. Rose Anastasio says:

    I am willing to talk to the graduate student about my chronic lyme disease.

    Thanks,

    Rose Anastasio
    (908) 692-7787

  2. Donna Paylor says:

    Hi Victor,

    I’ve been living with chronic lymes disease for 12 years diagnosed but have had symptoms for many years prior. I am coming out of a two year relapse and found a Doctor who is treating me . This doctor doesn’t accept insurance . My treatment thus far has cost $20,000. I am fortunate to find this doctor as well as the money to pay for this.The problem is I’m running out of money. This doctor saved my life.
    If I can be of help I am interested in sharing my story

    • Jenna Seaver says:

      Hi Donna – I passed your name and email to Victor – he will contact you directly. Who was the doctor that helped you? I try to keep a database so when people email me I can try to help…

  3. angela says:

    Hello, I would possibly be willing to speak with him. I have not officially been diagnosed with Lymes, but I am a fibro patient and have been for several years. Are these phone interviews??

  4. Chasity DeSmidt says:

    I would love to have an interview. I live in Mississippi and let me just say, medical care is not at all good around this small southern town!!! I have been told by several doctors that lyme isn’t in this part of country!!! SOOOO frustrating!!!! I have NO medical anything anymore. I have lost everything, job, car, kids. If I can just tell my story and how awful this disease really is it would probably help my deppresion.

  5. carol taylor says:

    suffering since 1991, better once discovered and long course of treatment but later MVAs and surgeries caused to go downhill and treatment not being local am bed bound on IV hydration and severely malnourished as can eat only about 2 cup yogurt a day. both of these issues curable and were gone with lyme treatment now have to endure level of illness knowqing treatable if dedication could be gotten. Last two times in hospital for sepsis both these conditions went both heart and GI problems went away w/io 12 hours on the IV antibiotics for thew sepsis so have proof that incurable. many other issues too such as like Yolanda Foster cannot read or write though high IQ and bookworm since 2001 neurological break/ brain injury from Lyme cannot now follow any plot to read a book, vision impacted too. A MOST COMPLICATED CASE TOO LONG TO WRITE BUT LONG MISDIAGNOSIS CAUSED OPRGANS TO BE FAILING BEFORE PROPER DIAGNOSIS. NOW Both TOO WEAK and cognitively impaired to fight for treatment as so difficult to get.
    Bizarre that both BCBS and Medicare spending a fortune on my medical care but not addressing cause- I am just slowly dying away due to lack of treatment.
    Dr jemsek dr run off from NC said movie should have been made about me as such varied and bizzare symptoms, circumstances of reinfections, accidents making worse etc and have all the Difficult and Bizzare symptoms and misdiagnosis and treatments that prior to discovery that was Lyme the treatments only made things worse

  6. Jen says:

    I would be interested in finding out what would be involved in helping Victor to achieve his aims.
    Many thanks

  7. Kass Van Patten says:

    I would be willing to be interviewed. I was sick for over ten years but now am back to 90-95% health and like to share a story of some hope that once given the right treatment I got better.

  8. Lindaa says:

    I was just diagnosed for the second time.
    I have never found a tick on me nor have I have the bullseye rash.
    I live in NY. But for the next few months I will be in CO.
    If more interviews are needed let me know.
    Sincerely
    Linda

  9. geoffrey steiner says:

    I AM WILLING TO SHARE MY LYMES STORY ,I GOT IT ON MY 100 ACRE TREE FOREST VIETNAM MEMORIAL CENTER OF MINNESOTA .PLANTING TREES THIS APRIL 35TH YEAR. GOT LYMES APRIL 1984 NEVER HEARD OF IT 5 YRS SICK DIAGNOSED FIBRO LYMES 1989 ,TREATED INTRAVENOUS AT HOSP 21 DAYS RELAPSED THEN U OF MN DRS TREATED 2 1/2 YRS 30 DAYS ON ANTIBIOS RELASPED WEEKS LATER. 1991 GOT IT APRIL THEN AGAIN NOV HAD TEMP BLINDNESS, DIAGNOSED TEMPOARL LOBE SEIZURES AT VA HOSP IN 95. YRS OF RELAPSING THEN 2004 , 06 08 MALARIA VIETNAM CAME HOME TICK ON BELLY LYMES 20 MONTHS TO RECOVER,LYMES 2010 7 TICK BITES, GOT IT 2011 AND 2012 TWICE BOTH YEARS . HOSP TREATMENTS EVER SINCE GOT IT MY 12TH TIME IN 2013 ALSO HAD BABESIA. MY DOG LYMES ANAPLASMOSIS HORSE GOT LYMES TOO.MANY NEIHBORS.I HAVE RECORDS I KEPT SINCE 1990.LYME ADVOCAT 25TH YR.YEARS OF SYMPTOM CALENDARS TICKS TAPED TO THEM.320-749-2565 GEOFFREY STEINER DISABLED NAM VET.CUSHING MN.VETS DRS REFUSE TREAT TESTING WITH BULLSEYE RASHES ETC 3 HERE IN MINNESOTA.NATL NEWS SAID FROM MPLS TO NORTH OF ME WORST IN USA. TRAINED PSYCHOTHERAPIST,2009 JEFFESON AWARD DC AS NATIONAL HERO.UNSUNG HERO 1985 PEOPLE MAG NEXT YEAR NEWSWEEK MAG 3RD YR READERS DIGEST.1987 HONORED AT W.H. BY REAGAN. CHAPLAIN USMC RETIRED GEOF.

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