Prelude

Opinions about the Whittemore-Peterson Institute post-XMRV run the gamut from appreciation to anger.  In this prelude to the interview, which  is not about those issues, I offer up some thoughts.

Every organization from the OMI to the CFIDS Association, from the Whittemore Peterson Institute to the Simmaron Research Foundation contains  people who are passionate about eradicating Chronic Fatigue Syndrome. They may have different ideas about how to do that but the underlying passion is the same.

The best thing I think I can do is honor and speak to that commitment.  The worst thing I can do for myself and others is to speak to and focus on what’s wrong.  If we speak to each others commitments I think miracles can happen in this very small community with its many needs. We all want the same thing.

There’s a lot we don’t know about each other as well and that leaves room for all sorts of interpretations.  I didn’t know anything about Andrea before this interview. What I learned surprised me.

Andrea Whittemore-Goad

 “I have been given three new gifts this year.  The gift of time, the gift of letting go and a willingness in my soul to share my laughter and tears wherever my life may lead. I have had ups and downs, bumps and bruises, scrapes and deep wounds this year, yet I have survived it all” AWG.

Andrea Goad Whittemore came down with ME/CFS after surgery to remove her tonsils when she was ten years old.  Since then she’s had viral meningitis, Influenza A, and co-infections of hemophilus B, salmonella, babesia, cryptosporidium, and mycoplasma pneumonia, reactivated viral herpetic infections of HSV-1, EBV, hhv-6a, and hhv-7.

Andrea is 36. She has had ME/CFS for over 25 years

She has low natural killer cell function, mitral valve prolapse, gastroparesis and high inflammatory cytokines that have caused painful auto- immune processes to grow on her collarbone and the inside of my elbows. She also developed hypoglycemia and polycystic ovary syndrome and  had daily catamenial seizures almost 6 years ago which left her bedridden.

After getting ill her cognitive skills deteriorated dramatically but improved dramatically when she was on Ampligen. While on Ampligen she  became a gentle yoga teacher, volunteered at a local kindergarten classroom and after school programs, teaching at risk and special needs children yoga. After 8 years on Ampligen she became intolerant to the drug and began suffering daily seizures. Eventually she found an off-label drug that worked, but had to drop that after experiencing metabolic acidosis.

Despite this Andrea has improved and the seizures are gone. I ended this interview with Andrea thinking she was doing pretty well, but then I took a look at her blog.  I was wrong. Here’s some of the things that have happened in the last six months. Excerpts from her Persist Without Exception blog (AWG) are posted throughout this piece.

A Few Months

Today I will be persisting laying in bed watching Downton Abbey AWG

In September after two separate regimens of antibiotics and antivirals Andrea  is still recovering from a bacterial infection s she picked up in July.   In October she wakes up and is unable to walk on her right food because of excruciating pain.  She is diagnosed with mycoplasma pneumonia and has to start her third round of antibiotics in less than two months.

In mid-October, after headache, spinal pain, nausea, difficulty looking up, pre-seizure symptoms and extreme vertigo alarm her physician she is diagnosed with a central nervous system viral infection and begins pediatric doses of antivirals. She starts the new year off ‘really, really sick’ and starts two new treatments and will begin a third soon.

If it’s not one thing it seems it’s another.

An Interview With Andrea Whittemore-Goad

“In chronic illness there are days where you have to accept punishment” AWG

You became a visible advocate for the WPI and for ME/CFS once the WPI was created but you’ve also been careful to maintain your personal privacy as well. Rumors have floated around from time to time about how you’re doing or what you’re doing. Why were you careful about maintaining your privacy and why come out now?

The short answer is I was very young when I became ill. I have been living with a neuro-immune disease for 25 plus years now.  The long answer is I had serious cognitive challenges and felt others could do a better job speaking up for me when I was younger.  Jerry Crum, Anita Patton, Kelley Jefferey , Robert Miller and Pat Fero are the reasons I began to change my mind.  Jerry asked me to become an advocate and tell my story many years ago back in Washington, DC. Unfortunately, I wasn’t able to travel at the time, so I allowed my family to be my advocates.  However, I did get involved with advocacy efforts at a local level later.

My mentors taught me with great wealth comes great responsibility and I had a wealth of information that others did not or could not understand without actually living with this disease.  I felt I had a media avenue others did not and I felt something had to change. When I progressively got worse with seizures, I thought if I ever wake up from this nightmare, I am going to write and tell my story. I was no longer afraid.

Today I practiced acceptance, letting go of an outcome and opening my heart. I’m back in bed resting now but every time I still do just a little bit I can give myself a virtual gold star for not giving into the fear I’m relapsing and never going to be well again. AWG

When I met and heard about patients quietly suffering around the world I felt I had to speak up. After I relapsed completely, from Influenza A/Swine Flu, in June 2009 I felt even more responsibility to speak up.  That is the closest I have ever felt to losing my battle with this disease.

I read the stories of young children from Invest in ME, the 25% group and Sophia Mizra. I read about a bedridden and wheelchair bound child having been thrown into a swimming pool to see if he could swim.  Patients from the UK, Netherlands, and all over the world latched onto my memory and broke my heart.   I read of patients that have never had better options for care than anti-depressants and CBT.  I felt something had to be done.

I knew I was lucky and that I was very, very sick. ME/CFS had changed my life, but I’ve always had the most loving and supportive family and friends.  I was rarely ostracized like so many have been. I have never been left to suffer in isolation as so many others have.  I refuse to let anyone bury either this disease or the patients suffering in dark rooms in silence. I’m here every day to do my part to fulfill mine and my family’s mission and goals to find a cure for Neuro-Immune diseases.

Health

“Being left behind is devastating.  It felt like no matter what I would never fit in. I  would never be normal. The bible says not to covet what others have but when your friends, siblings ,cousins, and god family have children like you have always wanted, it’s hard not to want that for your own life.  It’s hard not to believe something went wrong long ago when God made you.”AWG

Can you describe what happened when you got ill… what you were doing at the time…what was your health like…? 

I was a very active child. I loved school. I had a large group of neighbors, friends and cousins I attended school and extracurricular activities with.  We played softball, competed against each other on swim team and cheerleaded  together. I was also involved in Blue Birds, piano and dance lessons.

After her tonsil surgery Andrea rarely was well enough to attend school

In 1988, I was diagnosed with a non- EBV mono and chronic bacterial tonsillitis. I was began having bouts of tachycardia from a mitral valve prolapse, chronic headaches and stomach pain. My pediatrician and family made a decision to have my tonsils removed in January 1989.

I was never the same after the surgery.  My fevers were very high. They cancelled the surgery one time but decided to go forward with the surgery the second time.

Did you know any other kids with this disorder at the time you became ill.  Were you able to attend school?

No I did not.  No I was not able to.  I would attend intermittently. I was on a homeschooling program through our public education system called Homebound.

I remember hearing at the Reno Conference that you were in really difficult shape; that you were having frequent seizures. Can you say what kind of seizures you were having, are you over them now and if so, what worked?

I was having catamenial seizures they were brought on by severe hypoglycemia and changes in my hormone levels.  They are described as looking like a grand mal seizure. I don’t have any memory of them; just the side effects from the medications I had to be given, to the difficulty walking and speaking for hours to days afterward. I started progesterone therapy, antiviral therapy and changed my diet.

How many times does it take to accept a relapse? Every single time I relapse I go through a mourning process. A process of missing, wishing and hoping. The missing out on a full life, wishing I had children and hoping for a cure is what keeps me going. It gives me a mission to work on. A. W.

Are you still having seizures?

Thank you ,God. I am so blessed.  I haven’t had one in 14 months.

How would you describe your ME/CFS? As progressive, stabilized, relapsing-remitting?

Andrea describes her illness as ‘relapsing-remitting’. Infections are particularly hard to recover from.

I would describe my disease as relapsing remitting. I have been in remission 3 times in 25 years.  I have recovered with treatment to almost 70% before.  I see stabilized as someone who never gets sick anymore and progressive as someone who continues to get worse every day or every year even with treatment. I have many symptoms like patients with relapsing remitting MS.

 How is your health now? On a scale of 1-10 with 10 being  full of health and energy, where are you know?

I am about a 5 or 6 most days. I am so blessed. I still have really tough days though.  Especially, each weekend after working all week or after illness. It can take months to recover from a bacterial or viral infection.  But there is no comparison as to how I was in 2009. I was on the negative side of the scale before.

Treatments

I went to my first full restorative yoga class without oxygen and outside the home two days ago. Those of you who know me this is an amazing blessing. Four years ago, I had to transition from teaching gentle, children’s and senior yoga after I began having seizures. They became erratic and frequent after an extreme bout of Influenza A that hit in June of 2009. Due to excruciating spinal pain and difficulty lifting my arms and legs after a significant relapse, I could only do very gentle pranayama and meditation. I have been waiting patiently to bring this part of my life back. Thank you God. A. W.

You’ve had Chronic Fatigue Syndrome for a long time and I imagine you’ve tried many different things. Can you talk about your attempts to get well?

My first treatments were for my sleep, heart, stomach and pain. I was bedridden and did not find much relief until finding an integrative medical specialist, Dr. Peterson, Ampligen and now an integrative program of Eastern and Western Medicine. Now I take a combination of Chinese antivirals and Ganoderma mushroom, vitamins, supplements, and when needed drugs prescribed for co-infections, pain and nausea.

What Chinese antivirals are you taking? I guess you test positive for herpes viruses? 

My doctor treats me with many different herbs, supplements, and vitamins. Yes but not CIHHV-6.

You were trying the Paleo diet. How is that going?

A recent change has been a ‘clean gut’ paleo-like diet

I just started the Clean Gut diet a lot like Paleo. My diet is integral to an auto-immune inflammatory process that began in 2009.  Unfortunately, I think many will agree it is extremely challenging to make meals when so ill. I am blessed to have my husband to help with large meal preparation.  I am now well enough most days to make my daily shakes, lunches and follow recipes cognitively. My diet is basically organic, free of hormones, gluten, dairy ,soy, corn, egg, grains, alcohol, processed sugars and chemicals.

Have you tried something that you think may have affected you negatively long term?

Yes, antibiotics and steroids.

I think one of things that interests people about you and your health is that you’ve got resources. I know for me at times I would think if I’d just tried X or Y maybe it would have all worked out, but you’re not well. Honestly, that’s a little deflating :). Where are you regarding trying new treatments?

I am not cured. There is a difference. I am decently well if I stay within my boundaries and routine. I plan for rest every day after work with my oxygen for 45 minutes.  I work  21 hours a week.  I don’t drink or smoke. I eat healthy  85% of the time.  I go to bed early and take naps when my body needs it. I walk my dog, get massages and acupuncture every 3 months, get outside every day for 10-15 minutes, open my windows, meditate, do gentle yoga with prananyama, go to church with my family, attend social events with my husband when I am able.

I look at my health from a holistic perspective  Physical, Spiritual, Emotional, Mental, Environmental, Occupational and Social. The more I take care of these 7 Dimensions of Health  the more I can give back to others.

You got up to 70% of normal three times in the past 25 years.  I assume that one of them was with Ampligen. Looking back do you have any idea what caused you to relapse after you got better?  Did they just seem to stop working?

The first time I noticed a big difference was through my HMD/MD  at the time Dr. John Diamond.  I was 15 lbs underweight. He worked on treating pathogens along with healing my gut. Even though I went into remission the cognitive dysfunction was still really severe. I relapsed within a week of taking my mandatory college vaccinations.

The second time was with Ampligen. When I went into remission I chose to take a holiday from the drug for 13 months.  The holiday was because I wanted to be free from the tether of an IV life. I was receiving 4 a week because of dehydration issues. So for me, it wasn’t a 30 minute infusion. It was 4 hours 4 days a week with taking 2 days to recover in between infusions.  I had no quality of life.

I took a family trip and picked up Influenza A/ Suspected Swine Flu.  When I began Ampligen again I didn’t respond the same way. I began having reactions and we had to drop the dose. The seizures and auto-immune reactions began getting worse and it was no longer working the way it had.

The 3rd time was after taking Viread.  Viread eventually caused a metabolic acidosis condition called lactic acidosis, an issue with my liver and severe anemia. I had to stop the medication and relapsed after a reactivated EBV, coxsackie, and bacterial infection of mycoplasma pneumonaie.

Personal

“I don’t give up for very long.. I may throw something, punch a pillow, scream at the top of my lungs( poor hubby) may be I collapse from sheer exhaustion or may be I find a strength within I didn’t know I had. Something that brings me back to a memory comparable to the struggle I’m dealing with now. It reminds me if I got over that hump before I can do it again. Again and again. The most important thing is to keep trying” A. W.

Andrea and her husband

You’ve been married for several years.  Can I ask where you met your husband? The reason I’m asking is that I find that it’s really hard to a) meet other people when your activity is so limited, and b) find someone who’s OK with someone having a chronic illness that’s really limiting….

Yes, I have been married for 5 years. I met Brian when I was in remission on Ampligen. One of my girlfriends was moving and asked me to attend a going away dinner at a restaurant near my home. I met him there.

Your health has gone through huge up and down swings. At its worst it’s been very, very bad. I’m imagine that at times that you’ve been very worried. Is there anything you do to bring solace or peace or hope to this situations?

My faith gives me peace and solace.  I always try to find one thing everyday to be thankful for.  That isn’t to say I don’t have hours or days where I feel really sad or a feeling of longing to be able to do more. I try very hard to focus on what I am able to do and be thankful for those times.  There are times when I am reminded how much I sacrifice to help others but I wouldn’t have it any other way. I also use meditation and visualization techniques I learned from Dr. Bernie Siegel and my Grandmother when she was battling cancer for the second time.

Anything you’d like to say about your mother? 

The WPI wouldn’t exist without my incredible family. They have chosen to continue the imperative work of keeping WPI going. I could not do this without their love and support every day. My mother has been my nurse, advocate, and very best friend. She does this out of pure sheer determination to find the answers and treatments for patients suffering around the world. My family and friends have taught me the very most important lesson of my life Always Have Faith and Never Ever Give Up Hope.

Whittemore-Peterson Institute

“I have been living with Severe ME since I was 10 years old. When you have dealt with a chronic illness this long you begin to dissect yourself and eventually graduate to observing yourself. Guilt and grief is something I have dealt with all of my life. The guilt comes from not being able to be like every one else and the grief comes from continuing to try to be like everyone else and failing. I hope you can understand what I’m trying to say. http://www.chinesemedicineliving.com/blog/philosophy/the-emotions/grief-the-lungs/ AWG“

Are you working now?

Annette Whittemore and her daughter, Andrea. Andrea’s plight lead Annette and her husband to create the Whittemore-Peterson Institute

I work at Whittemore Peterson Institute. In February 2012, I became a full time member of the donor relations/ marketing and communications team for WPI.  Prior to that I was a volunteer.  Since 2009 I have volunteered for advocacy efforts, raising awareness and helping with social media  and patient outreach.

 If you were to say one thing about the WPI that most people probably don’t know – what would it be? 

We work really hard. Even when we aren’t physically at the building we are always trying to make WPI the best it can be and ultimately translate that into helping patients.

 What is happening at the WPI right now?

Our research team is working really hard on grants and the study of the innate immune response in chronic inflammatory disease.  Dr. De Meirleir is seeing and treating patients in the Center for Translational Medicine.  Our Education and Outreach team are planning our annual events.  We are gearing up for a fun wine tasting and our 9th Annual  I Hope You Dance event will be here before we know it.

What a time XMRV was for the WPI. They went from possibly being the savior to having some people be very at them. Mistakes were surely made, but  the WPI was new to the scene and you, Annette, Dr. Mikovits and everyone associated with the WPI  was quickly faced with some  difficult challenges. There you were front and center on the Facebook site. When things went south it got pretty ugly at times. That must have been really difficult. Can you say anything about that period?

To be honest I was extremely disappointed XMRV didn’t work out and lead to treatments that could cure me or so many others.  However, the research led us to new and exciting research avenues to pursue, changes including the head of our CAB, our new research director, and medical director.

I am thankful for the great scientists, researchers and philanthropists who got involved because of the visibility of the disease at the time. I am encouraged by the positive studies and progress the WPI and our community continues to make.

Personally, I feel extremely fortunate to have met and become a patient of specialists in Infectious Disease, Integrative and General Medicine whose treatments have led to some improvement in my overall health and well-being. I believe everything happens for a reason and the challenges I have been through only made me stronger. I am working every day to give back to those that helped me. I hope someday the research we are doing will translate to real and lasting treatments for those suffering all over the world.

“I woke up this morning feeling blessed. Honestly, blessed beyond understanding. I thought this Season would be the most challenging of all. Watching every moment wondering if it was the last time I would ever feel that” A. W.