IT HAS BEEN A LONG AND FRUSTRATING 6 YEARS… to say the least.  It felt like an overnight transition from healthy to unwell, but I think realistically it was over a period of about 6 months with things getting progressively worse as the years marched on.  I was an active, kick-ass gardener.  A ripping out shrubs with a pick ax and hauling rocks kind of gardener.  I was a children’s photographer who carried two cameras and lenses weighing at least 30 lbs around my neck to chase a little kid across a field.  I squatted, I stood, I ran, I dropped to the ground to get a shot from a different perspective.  I hauled lights and backdrops and sandbags….  Then, all of a sudden, I turned into to someone who couldn’t stay awake all day and would often wake up at my desk – not realizing I had fallen asleep.   Someone who couldn’t get things on the top shelves anymore because it hurt too much to just reach.  I was someone who couldn't leave my house because of debilitating stomach problems.  I was someone whose very last photo shoot had to be shot over the course of 3 days because I couldn’t get through the session due to an exhaustion so powerful it was hard to stay conscious.  So, as I packed up my gear and left that last shoot, someone had to help me get myself and my equipment to my car because I couldn't do it myself.  And as the person kindly got me safely inside and he shut the door to my car, simultaneously, the door was shut on my new, successful and fulfilling - very short - career as a photographer.  I was now someone who sometimes needed someone else to pick up and drop off my kids at after school activities because it hurt my hands too much to use the steering wheel of my car.

I’ve seen more doctors and specialists than I care to think about.  I’ve told my story to doctors so many times.  And almost every time, I leave the doctor perplexed.  What could this be?  I’ve been treated for Lupus and Lyme Disease, just to see if it would work.  I’ve been poked, prodded, x-rayed, CAT scanned and MRI’d.  I’ve been to cardiologists, endocrinologists, rheumatologists, neurologists, ophthalmologists, gastroenterologists, allergists, gynecologists, radiologists, immunologists…. All to no avail.  Along the way we found a few medications that would help a symptom here and there, but for the most part, it was exhausting and I still had no answers.  So, ultimately, I gave up for a few years.  I knew from all these doctor visits that nothing seriously life threatening was happening and I just adjusted to my new life of limited activity and pain… taking about 10-15 different prescription meds that were keeping me as functional as possible.  I was managing alright with the status quo.  But last spring, I just began to get worse.  So, despite my dread at going through the process again, I picked up the trail with renewed hope that someone could figure this out.  I started with a new GP and a new round of referrals with new specialists.  I’ve been to many docs at HSS and Weill-Cornell in Manhattan and specialists all across NJ & NY.  I had been this route before and still… just like last time, no answers.  When I went to a new neurologist to be evaluated for MS a few months ago, it had been a while since I told my story from the very beginning.  I had nearly forgotten where I had come from and where I was now and the magnitude of what this Thing had done to my life.  I was thinking about all I had lost in these past 6 years.  It really hit me as I was recounting the story of my illness to this doctor.  But I had hope she would help me. I thought, as I have so many time before, maybe I have (insert illness here… that day it was“MS”) and I can begin treatment and start feeling better!  Not that anyone would ever want (“MS”)!  But it would be an answer and there is treatment for it…. and at this point, treatment is everything.  So, I recounted the story of my journey to this neurologist, showed her my MRIs and waited for her to speak.  And when she did, she said “I’m sorry you have struggled for so long!  But the good news is, you do NOT have MS.”  And – to my absolute horror – I started crying.  Ugly crying that wouldn’t stop.  Trying in between gulps to try to explain that “I swear don’t want MS!  I’m not crazy!  But, I can’t understand this – look at all of these things that are wrong with me!  Why can’t anyone tell me what is wrong with me?”  I honestly don’t know what came over me that day, I have never had that reaction in all the years of this journey.  But I seriously lost ma’ shit that day.  I was pretty much at the end of my rope.      

Finally, in November, I saw a(nother) new rheumatologist, this time at NYU Langone, that my new GP had recommended.  She was different.  I could tell right away.  She listened to me with so much compassion.  She wasn’t frustrated or tuned out – she was curious.  She asked lots of questions.  She wanted to help.  She ran every blood test in the book for reassurance.  But she told me that she suspects I have Chronic Fatigue Syndrome, in addition to a few other conditions.  I literally said – “But wait, doesn’t Chronic Fatigue mean 'It’s all in my head?'"  And she emphatically said no and explained that it is called Myalgic Encephalomeyelitis. And that it is a very real and often debilitating illness that would cause exactly the conditions I have been living with.  She said she would run some titers for viruses in my blood work and if they are elevated, that is a very good sign that we are dealing with ME/CFS.  She would recommend an incredible doctor at the forefront of ME/CFS research in Manhattan that has great success treating ME/CFS patients. 

I didn’t know it then, but that was the final step – the end of my endless quest to get “The Answer” to “This Thing” that took over every function of my body 6 years ago!  My viral titers came back and my levels of Epstein Barr are so high they can’t accurately be measured.  (For reference:  The “high” range on the lab work only goes up to 10.  So… 10 is really high, right?  My level is >600!)  So… off to the ME/CFS specialist I went! She confirmed my diagnosis with certainty and without question.  Every single symptom – no matter how crazy or small or minute – is accounted for.  In actuality, I only told a part of my long story to this doctor – she knew the rest.  Because even though my kooky symptoms may be rare, they are common symptoms of ME/CFS.  She would say, “Do you have this?” and I would say “YES!”  What a relief it was to have someone understand and better yet, be able to help me!  She also uncovered some other diseases which often come hand-in-hand with ME/CFS.  But the ME/CFS is where we start and it has been the source of most of my problems all these years.  I have already begun treatment with Valtrex, which is the first line of defense.  But there is a long way to go yet and I will receive more targeted treatments and should begin to see some relief from some of the things I live with.  Feeling “Normal” is a ship that sailed away a long time ago.  I am OK with that.  But I would be ecstatic with feeling “Improved!” 

Below is information about ME/CFS in more detail and below that is a list of the other diseases/conditions that I am dealing with, as well.

MYALGIC ENCEPHALOMYELITIS (ME)/Chronic Fatigue Syndrome (CFS)

Here is the definition of ME/CFS from the CDC.  

https://www.cdc.gov/me-cfs/about/index.html

  

Here is the definition of ME/CFS from the NIH.  

https://www.nih.gov/mecfs/about-mecfs

There is very little information out there on ME/CFS.  Nothing about it is taught in medical schools so most doctors know little to nothing about it.  It carries a old stigma of being a psychosomatic illness.  But that is very outdated and grossly inaccurate information.  There is still much to learn about ME/CFS, but there is no question:  This is real.  It affects millions.  It’s life altering at best and debilitating at worst. 

For me, I’ve probably been dealing with some form of it since I was a pre-teen/teenager.  But things were really good for me in my 20’s and 30’s – really great, actually up until 6 years ago, when everything changed.

Through blood testing we learned that I have several active viruses in my body right now:

• Epstein Barr Virus (EBV) 
• Coxsackie Virus
• HHV6 (not the STD herpes)
• Pneumonia 

It is possible to have ME without these positive blood test results.  But because I have them this is a positive unquestionable diagnosis of ME.  (It is also indicative of an immune deficiency which will also be addressed by an immunologist.  I’m working on that… one thing at a time!) 

ME/CFS causes a multitude of symptoms:

This is the big one and it is very specific to ME/CFS

POST-EXERTIONAL NEUROIMMUNE EXHAUSTION

When I play, I pay.  When I exert myself, I crash.  What qualifies as “exertion?”  Well, every day it is different.  Some days “exertion” is a trip to NYC with my family.  Other days, it could be simply taking a shower!  So, when I am out at church, in your home for a visit, in the city, out to dinner….  I’m having a good day.  And I do have lots of them.  But what you can also assume is that I will have to rest from that visit to your house, that day trip, that dinner…  It doesn't even have to be physically exerting - this reaction can happen from mental exertion, as well.  I have known my body is doing this for a long time, even though I didn't understand why.  So, for the last few years, I choose where I exert myself and then I make preparations for the fall-out.  Remember, when you see pics on Facebook of me in the city – I have a scheduled “recovery day” the next day.  Sometimes I’m just moving slow the next day.  Sometimes, I can’t get out of bed.  And sometimes – this one is really awful - I can’t actually make it through that day in the city or finish that college tour and I’ve ended up laying down on the floor of public bathrooms or sleeping in the car with the AC blasting while the family finishes up the college tour.  I have missed weddings, I have missed concerts and parties.  When I hosted Thanksgiving – I couldn’t even make it until my family left before I was laying on the cold tiles of the bathroom floor, sick for 3 days.  It took more than a week of recovery after the Women’s March in Washington.  After exerting myself in a very mild yoga class, I was in bed for days – to the point that I was actually unable to even change my position in bed.

PAIN

My pain comes in the form of muscle cramping and pain, severe headaches and joint pain.  It is there every single day.  I am now a lifetime patient of physical therapy to maintain the pain and cramping in the muscles in my back.  Some days are much better and some days much worse.  But it is always there.

NEUROCOGNITIVE IMPAIRMENTS

Brain fog on crack is what I call this one!  This is a step beyond “Where are my keys?” or “Why did I come into this room…” 

• Sometimes I say the opposite word of what I mean – I may say “disgusting” when I want to say “delicious” or I just say the wrong word entirely – I’ll say “sofa” when I want to say “refrigerator.” 
• I sometimes completely forget where I am going when I’m driving somewhere.  I’ve had to pull over and think it out for a few minutes before I continue on my way.
• It can be very hard to write.  I can’t spell anymore.  It can take hours to write a detailed email.  (Don’t even ask how long it took me to type this lengthy tome!) 
• I’ve typed words backwards without realizing it.  Let me tell you, unintentionally writing a word backwards in the middle of a text is wild…  Seriously…  It’s !PU DEKCUF     
• Often, in social gatherings, I can’t tell stories anymore because I can’t put all the pieces of a story together in my mind or find the words to even say it.  Or I forget what I’m talking about half way through!

These are just a few examples.  Some days I’m really good and these symptoms are much better.  But often, they are not!   

NEUROSENSORY, PERCEPTUAL AND MOTOR DISTURBANCES

Muscle weakness, cramping, poor coordination, unsteady on feet.  I get foot cramps, leg cramps, Charlie horses, arm muscle cramps….  I fall down - much more than I (or my rear-end!) are comfortable with.  On a bad day, navigating my way down a flight of stairs takes all my concentration… and a railing… Thank God for the railings!

VISUAL PROBLEMS

I have trouble focusing my eyes, I have trouble adjusting from light to dark, I have trouble seeing contrast – for example – white writing on a black background is a blur.  I have sensitivity to light.

FREQUENT UTIs

STOMACH/DIGESTIVE PROBLEMS

FLU-LIKE SYMPTOMS

SENSITIVE TO TEMPRETURES/HEAT

EXCESSIVE SWEATS

Shortness of breath on exertion

Lightheadedness/dizziness..................

OK, onto TREATMENT: 

My doctor is one of the head research docs on ME/CFS in the country. She served for 12 years (2010-2017) on the Chronic Fatigue Syndrome Advisory Committee (CFSAC) which advises the U.S. Department of Health and Human Services.  From 2014-2017 she served as the committee’s chair.

The first line treatment she uses is Valtrex and she has had great success with it in treating ME.  I have already begun my treatment.  She told me that when I first take it, it will probably get worse before it gets better.  So, I'm feeling a little crappy right now.  But I'm hopeful this will eventually work.  She has a plan for second and third line defenses, as well, if Valtrex doesn’t fully do the trick.  I should begin to feel a little better in a month, but sometimes it can take a lot longer.  I can be a patient patient.  

There are other conditions that I also have, some are a diagnosis in progress.  But they are all but certainties.  These illnesses very often come hand in hand with each other. 

HYPOTHYROIDISM

MAST CELL ACTIVATION SYNDROME (MCAS)

https://www.mastcellaction.org/about-mcas

This rare condition is in my family.  It is often found in family clusters.  Miranda also has MCAS.

Postural Orthostatic Tachycardia Syndrome (POTS)

http://www.dysautonomiainternational.org/page.php?ID=30

This can be a completely debilitating disease.  My resting heartrate is about 88-95.  That is laying down in bed resting.  It goes up significantly after standing and the longer I stand, the higher it goes.  The symptoms are fainting, excessive sweating, fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, shaking, coldness or pain in the extremities, chest pain and shortness of breath.

 

OTher likely illnesses that need further investigation:

EHLERS DANLOS SYNDROME

This could account for my joint pain.  It often comes hand in hand with MCAS and POTS.  I do not have the type of EDS that affects the skin – only the joints.

POSSIBLE IMMUNE DEFICIENCY

This runs in the family and early bloodwork supports further investigation into Immune Deficiency.

So, this story isn’t over.  I have a long way to go – but at least I know.  Knowledge is power.  Hopefully, it’s all going to get better from here.  And no more crying in doctor’s offices!