Monthly Archives: May 2014

The Other Side Of The Stretcher- My Personal Story






May 12th Is ME Awareness Day!


My Personal Story

The Other Side Of The Stretcher”


Where did I get that name “The Other Side Of The Stretcher?”

I was a Registered Nurse who became a patient, thus went to
the other side of the stretcher.

Another nurse actually made that statement to me 24 years ago when I had a procedure called a bronchoscopy which was done in the operating room. The nurse, who happened to be the nurse in the operating room said, “ive never been on the other side of the stretcher, so I cant honestly tell you how I would feel being in your shoes right now.”

I never forgot that and I when I actually became a patient with ME/CFS I referred to myself as being on the other side of the stretcher. That was 20 years ago this past January of 2014.

Before ME/cfs reached a level to where I was no longer able to work (yes I was one of those people thinking the “thing” would go away until I found out what “the thing” or mystery illness was), I was an active Registered Nurse over 9 years in NYC.

When I found out what the “thing” was about May of 1993, I was relieved.
I wasn’t fully schooled yet on the condition, but I was
relieved to finally have a “name” for what had been going
on for basically all of my life since early childhood.
I didn’t know what was ahead as far as being that person
on the other side of the “Stretcher”, until I officially
became a patient and was in the crash from hell in January of 1994.

My story actually goes way back to when I was very very young, 49 years ago, I was 11 months old.  There was an measles epidemic at my brothers school and my mom said that my brother “brought home the bug.” This happened a week before I was supposed to actually get the measles vaccine. It was then too late for the measles vaccine as I had the measles. Up until then I was healthy.

After the measles, I always had some type of cold, flu, bronchitis, high fevers, painful ear infections, and seizures. My mother said she even had a supply, sort of an emergency kit, which consisted of phenobarbital for the seizures and adrenaline/epinephrine for when my lips actually turned blue because of respiratory problems from the bronchitis.

My earliest memories when I was 3-4 0ld, were my mother actually screaming at the landlord, as we lived in a 3rd floor apartment in Brooklyn NY, when the heat was broken, “If anything happens to my daughter, I will kill you.” He did not kick us out after she did that, he fixed the heat very quickly each time.

Things were also a little different back in those days. Doctors did house calls, the doctor came to our home often.  The Doctor also said to my mom things such as,  “keep her inside until she gets better” and “let her sleep, don’t wake her up.” 

Today doctors don’t do house calls and they don’t say “keep her home until she is better,” they say something more like “she can go back to school or go outside to play after she is on the antibiotics 24 hours.” In other words, back in the days when I was a little girl, children were allowed to be sick, today they are not allowed to be sick or they aren’t given the proper time to recover.

I also did not start speaking when children normally do. My mother thought it was because there weren’t any children in the neighborhood for me to play with and that she had to find a nursery school so I would have other children to play with.  The real problem was, was that I was actually speech delayed because I was 3 1/2, close to 4 years old and I was still not speaking.

My mother found a teacher who was originally from Israel, who ran her own nursery school. My mother enrolled me in the nursery school.  It was that teacher who taught me how to speak.  My mother and father always talked about when I started talking. My parents said when I spoke, I spoke with the same Yiddish accent that the teacher at the nursery school had.  Instead of saying a word like “swing”, I pronounced it as “sving.” My parents got a kick out of that.

Between the ages of 4 and 5 years old, I had a kidney infection that was caused by a strep infection. I was very ill and the doctor told my mother to bring me to the hospital. I remember being in there a week. 

The strep infection that affected the kidneys was from strep infected tonsils that I repeatedly had. My mother stated it had gotten so bad, I had strep infected tonsils every 2 weeks, so the tonsils had to come out. I was 5 years old at the time.

I remember when my mother was preparing me to have the tonsilectomy.  She actually did a really good job because I remember skipping around saying “I’m getting my tonsils taken out” and being very excited about it.  I also remember  when she brought me to the surgical center where the tonsilectomy was done, I remember being on the operating room table before the surgery, I knew I had to count backwards, 5-4-3-2-1. I remember saying to the doctor “OK” when I started to count backwards. 

I still remember waking up in the recovery room after the surgery was done, and I remember my mom carrying me into the house when we got home.

After the tonsils were removed, I started getting better as far as my health. I didn’t get sick as much as I was getting sick between 1 and 5 years old. 

I was able to attend school but from Kindergarden all the way through High School, my mother had a hard time waking me up and getting me out of that bed. There was never a day that I wasn’t late for school.

I was sick more than the other kids in school and always had that on and off sore throat.  I took longer to heal as far as any type of cut or scratches. But I would always bounce back,  and was always able to attend school and was able to pass my classes.

There was one year in elementary school that I was probably absent about 1/2 of the year in total days.  I remember being sick repeatedly with some type of viral illness, 104 fevers, etc.. A couple of days before Christmas break, I remember my mother saying to me, there is 2 more days, why don’t you try to go to school those 2 days.  I remember being able to, and then the Christmas break started.

Another thing that I had trouble with during school, was that I could never focus on the textbooks, thus I never really read them. I was able to take good classroom notes. I passed all of the tests. I always thought, well, the other kids are probably smarter than me. I didn’t know back then, that I probably cognitive difficulties already.
The same thing held true when I was in college. I took excellent classroom notes and was very fast. I could actually transcribe almost every word the professors were saying during the lectures. I had the same problem with the textbooks, I had trouble focusing and became very tired when I tried to read for any length of time. So, I would highlight sections of the material that was covered in the lectures and work around the issue that way. What I had done seemed to work The good thing was, I made it through the Nursing program and became an RN, passed my nursing boards the first time around.

One thing I do remember from when I was that young, until I was older in High School, is that anytime I did get sick, my mother did not let me go out of the house until I was fully well. My mother also always let me sleep, never woke me up until I woke up. She did those things because that’s what the doctor said to do. What she actually did was keep me from becoming sick and disabled sooner.

What I didn’t know until later on in my life, was that my mother always thought something wasn’t right. The doctors never said anything was wrong, but my mother knew. The reason why she knew, was because I got sick more than the other children and that she had to keep me home until I was fully recovered and not just until the fever was gone and that I had to sleep many hours. My mom also didn’t tell me until later on, was that she knew she had the same thing wrong with her, she just didn’t know what it was.

I found work easier than college, I realized was sort of an audio-visual learner. I picked up the routine very quickly and did very well in my job.  On the days that I was off from work, I would tend to hang around the house in my pajamas, I was very tired. I felt that “thing” hanging around in the background from when I was a little girl. I rested most of my days off.

When I got married, it became more difficult.  The days that I worked, I was so tired when I got home from work, I went right to sleep. I didn’t cook dinner on those days.  I remember people at work talking about what they made for dinner the night before. If my co-workers asked me what I had made for my husband for dinner the night before, I was so embarrassed to say that I was tired and went to sleep, I would say that I made some type of dinner.  The “thing” was hanging around in the background, still didn’t know what it was, but knew I had to rest when I was tired.

I also realized, I needed to work closer to home and work hours that were more regular.  I did just that, I changed jobs, from a hospital in Manhatten to a hospital closer to home in Staten Island. I also changed my specialty from CCU to the Operating Room. The Operating Room was open Monday to Friday, closed on weekends and holidays except for on call.  On call was usually once a month.  I was still tired on my days off, but felt a bit of a difference because I was no longer working a 12 hour night shift.  The “thing” was hanging around in the background, but as long as I kept a regular schedule and ate regular meals I did ok. I still didn’t enquire about what that “thing” could be.

I remember it was 1988 and my husband said to me, you get sick more than I do and I heal faster than you do. I said to my husband, don’t worry, one day we will find out what my “mystery illness” is, not realizing that 5 years later we would actually find what that mystery illness was.

In 1990, I gave birth to twins, my daughter and son.  It was a rough pregnancy, I was in the hospital 10 weeks before the delivery, in and out of pre-term labor. I was also not allowed to get out of the hospital bed. I was on full hospital bed rest.  I always wondered if that long hospital stay on full bed rest was a preparation for what was ahead of me not even 5 years later.

A twin pregnancy is considered a high risk pregnancy as 50% are born early.  This pregnancy was the toughest that my ob-gyn doctors had ever seen.  Things happened during the pregnancy that they could not understand including becoming so anemic at one point, they gave me paperwork for family members to fill out in case I needed a blood transfusion, so family members could donate blood. They did that because they said I delivered at that point, they would have to transfuse me because they already knew I was going to be delivering via C-section.

I remember during the anemia problem, I said to my doctor, well im usually tired all of the time everyday. I also said that I thought I always had an iron deficiency.  My doctor said to me, you don’t have iron deficiency anemia, they knew that because they did a extensive work up to see what was causing my CBC numbers, particularly the H&H to drop so low. 

I started thinking about that “thing” that had always been hanging around.  I knew it had something to do with that, but didn’t know how to explain it to the doctors. Since I was a nurse, it was embarrassing to even say that because I still had no idea what the “thing” or “mystery illness” was.

I was also very dehydrated all of the time.  When I first went into the hospital for pre-term labor, I had 2 IV’s, one in each arm, they were infusing each of them 200 cc’s per hour via iv pumps for 3 days.  I was also so thirsty all of the time while I was in there, instead of calling the nurses all of the time to refill my pitcher with water, my husband brought me a 5 gallon container so I would have plenty of water to drink and not have to bother the nurses.  The nurses were so kind, every morning they took my 5 gallon container to the ice machine, filled it up with ice, and then filled it up with water. 

Even though I was drinking all of that water, when I slept at night and then woke up in the morning, I was so dehydrated that my urine was almost brown.  One day the one of the nurses became very alarmed, I told her that happened every morning, and once I started drinking water again, the urine would turn back to a normal color.  The nurses were also seeing things they had never seen before.

The day my twins were born, they were 35 weeks, 5 days and both of them were over 6 pound.  Everyone was so relieved!  They as in all of the staff and my doctors sort of let their hair down and said that they didn’t expect me to walk out of that hospital with my babies. They said my babies were miracle babies! 

Months later after I had the twins, I had went back to work. Maybe a month after I went back to work I woke and had trouble breathing. I then went to the emergency room, the doctors sent me for a chest x-ray, they said I had bronchitis.  They had given me a prescription for antibiotics, and sent me home.  I was home sick from work for about 10 days. I knew it had something to do with the “mystery illness” but still didn’t know what the “mystery illness” was.

The bronchitis came and went for 4 months. My co-workers were worried about me.  They kept saying to me that I didn’t give myself a chance to recover after the pregnancy. They told me later on that I had actually looked very bad as well during that time.

During the 4 months of these bronchitis episodes, the doctor couldn’t figure out what was wrong. He had ordered so many tests including a Cat Scan of my head and could not find an answer. Finally the doctor said, you may have a tumor in your lung that we cant see on the chest x-ray. When the doctor said that to me, my life flashed in front of my eyes, I was only 26 years old and I just had my twin babies months before.  I actually started wondering if I was going to die because I had become so ill.

The doctor also told me that I had an anxiety problem and was probably depressed. I felt so lousy, I believed the doctor and went to a psychiatrist.  That particular psychiatrist was also board certified in Internal medicine and was skeptical of what the doctor was actually telling me.

The doctor admitted me to the hospital during the 4th month of the bronchitis episodes.  He said that I needed to have a bronchoscopy to see if I had that tumor that we couldn’t see on the chest x-ray.  I was in the hospital 2 weeks on IV antibiotics, because the doctor said  I had mycoplasma pneumonia. While I was there, I realized I was on a floor where all of the cancer patients were. The cancer patients were either getting chemotherapy of they were being sent home to die including the woman that was in the other bed in the hospital room that I was in.

During the 2nd week of the hospital stay, I went to the operating room for that bronchoscopy to see if there was a tumor in one of my lungs. The good news was, there was not a tumor in one of my lungs, and the biopsy that the doctor did, of a supposed polyp, was negative.  At the end of the 2 weeks, I was discharged to go home and I was so happy to see my babies and be back home.

End of November-Beginning of December 1990:
When I went back to the psychiatrist, the psychiatrist said he thought I needed a 2nd opinion.  When I saw I saw the psychiatrist again, he said that he wanted me to go for that 2nd opinion because he said that I shouldn’t of still been on the prednisone that the other doctor had prescribed. The psychiatrist said that it was normal to have a certain amount of bronchospasm after the pneumonia, that that I probably did not need it anymore.  The psychiatrist also did not believe that I had asthma that the other doctor said I had.  The psychiatrist handed me the business card of the pulmonary specialist that he wanted me  get the second opinion from.

I went home and told my husband about the 2nd opinion. He said it was a good idea because he didn’t think the doctor who had been treating me knew what he was doing. I then made the appointment for the 2nd opinion.

At this time which was the beginning of December 1990, I went to speak to the nursing director at my job. The nursing director told me that she was going to give me an extended maternity leave and to not to come back until I was fully recovered.  She too thought that I did not give myself a chance to recover from the twin pregnancy.

I then went to see the doctor for the 2nd opinion, a pulmonary specialist, my husband came with me.  I told the doctor everything that had happened. While I was there, I had a chest x-ray, pulmonary function test and blood work.  The doctor had gotten his copy of the PDR.  He looked up Prozac since that was the antidepressant that the psychiatrist had prescribed to me.  Prozac was still a new drug, was only on the market about 3 years at that time.  The doctor stated that he didn’t know much about Prozac at that time, he then pointed out that a side effect of Prozac was Asthma, Bronchitis and Pneumonia, that maybe I needed to cut the dose.  I also signed paperwork for the hospital to release the records so this doctor could see the records from the 2 weeks that I was in the hospital. Before my husband and I left, the doctor stated that he didn’t think I had asthma.

I went back to the psychiatrist and he was very happy and relieved for me as he did not think I had asthma either.  We then cut the Prozac dose to 1/2 of what the dose was.

I think it was about 2 weeks later, that my husband and I went back to that doctor as he just received the records from the hospital.  When we got there, the doctor had the chest x-ray films from the hospital and said that I did not have pneumonia, and that I did not have asthma, that he could not tell me what I had, but I didn’t have pneumonia.  He also didn’t see any type of polyp on the chest x-ray that the other doctor said he had biopsied. He stated that I did not need to be on the prednisone anymore, and that I should start tapering off the drug.

Not long after getting this information, the psychiatrist said that I was not depressed and I could stop taking the Prozac.  The psychiatrist said that they would always be there in case I actually did need them.  I was so happy, I said thank you so much, I gave him a big hug.

I stayed home a few more months to recover from the “mystery illness” as I still did not know what this illness was.  When I did go back to work, I went back to work 2 days a week and no more than that, as I had my twin babies at home and it also gave me a chance to rest between the 2 days. I also thought that maybe I was actually beating what that “mystery illness” was, but at that time, I still did not know what that illness was, that was the Spring of 1991.

My baby, who is my younger son was a surprise, we didn’t exactly plan him.  My husband insisted on taking me away for a week to get away thinking I would get a little more of a break, relax and maybe help with my recovery of what we didn’t know I was recovering from at that time except what was probably that “mystery illness.”  When we came back from the vacation, a few weeks later we found out another baby was on the way.  My husband was actually disappointed that it wasn’t another set of twins believe it or not.  This was the summer of 1991.

 This pregnancy was uneventful compared to the last pregnancy.  I had a few episodes of pre-term contractions that sent me to the L&D, those were caused by dehydration and urinary tract infections, which the doctors administered IV fluids and gave me antibiotics.  Otherwise the “tiredness” you “never knew” that you are supposed to feel during a pregnancy, I did not feel with this pregnancy.  I did very well, I rested on my days off from work, took naps when my twins napped, otherwise felt fine.

My OB/GYN doctors were getting nervous around the 7th month and kept asking me when was I going to stop working and take maternity leave.  They must’ve been suffering a bit of PTSD from my last pregnancy :).  I finally said ok, I will take maternity leave if it makes you feel better :).  This was which was sometime during the month of January 2002, I think around the 3rd week. 

Unfortunately right after I started that maternity leave, my father in law passed away the end of January 1992.  My father in law had a stroke during surgery the summer before and he never recovered. My son was due in less than 2 months at that point.  During that week of the funeral, my husband and I helped his mother, cooking, serve coffee and cake to the family members who visited in the evening, etc…  I pushed a little too much that week.  I felt “the thing” or “mystery illness” kicking in,  it kicked into a flu, upper respiratory infection and laryngitis the week after the funeral.  My OB doctors ordered antibiotics. I thought oh, no, this cant be happening, my son is due in 6 weeks, I can not have this and deliver a baby too, this will not be good.  The scare lasted 3 weeks, then I was recovered.  I was very relieved.  This was the end of February 1992.

It was the 2nd week of March 1992, I went to my OB/GYN doctor for my appointment which was weekly at that point for the last month.  There was a 2 week discrepancy with the due date so my doctor sent me for an ultrasound to see where I was and to see if we were going to try to go ahead an let me try to deliver via v-bac delivery or schedule a C-section because according to the current calculations, I was 41 weeks gestation.  I then went to the OB specialist for the ultrasound appointment to find out what the gestational age of the baby was.  The first thing the specialist said was, you are almost 39 weeks (actually 2 weeks sooner according to the current calculation, and also my correct calculations) ,”that baby has a big abdomen, 10 lbs plus or minus 1/2 of a pound, your not planning v-bac are you?”  I said, oh yes I am!  He said, “oh no, no v-bac for you, you will be having a c-section.”  I thought, well, my doctors will let me try, they are v-bac advocates….yeah right! 

Of course I was in denial.  When I went to see my OB/GYN for my appointment, she said go the hospital tomorrow for your blood work, you are scheduled for a C-section the next day.  I said oh no, she said oh yes, his shoulders are too wide, he will get stuck and we will have to do a C-section anyway.  I cried like a baby, but I got over it, went to the hospital for my testing and packed my bag for the hospital.

March 19th, 1992, my son was born! There was a snow storm and we drove through a foot of snow to get to the hospital for my son to be born.  The specialist who did that ultrasound the week before was pretty much on the money with that weight calculation.  He was 9 pounds, 11 ounces! Everything went text-book perfect, that day could not have went better!  The nurses knew me because of the last pregnancy where spent 2 1/2 months in the hospital, they picked a nice room for me.  The labor and delivery nurses knew me, they were excited to see me and finished the last minute preparations before I was brought into the L&D operating room. My doctors picked the best anesthesiologist who did an awesome job with the epidural anesthesia, the epidural lasted 12 hours. After I was in the recovery room, they wheeled me into the nursery on the stretcher so I could hold my baby, then they brought me to my room.  It was a wonderful day.  It was also an almost birthday present for my husband as his birthday was 2 days later :).

This time around, I stayed home for 6 months before I tried to work again.  I stayed home, gave myself a chance to recover, enjoyed my new baby, and spent time with my twins.

Spring of 1993- Still no name for the “Mystery Illness” or “The Thing.” At this point, I had changed jobs from the Operating Room 2 days a week, where I was on my feet the whole day those 2 days to Cardiac Rehab, where I was able to sit at a desk, much easier. I also found a per-diem job at a same day surgery center, and would work there 1 day maybe over other week depending on how I felt. I had changed jobs because I could not commit to the 2 same days a week in the Operating Room.  I also had another baby who was a surprise.

There was another nurse at the Cardiac Rehab that had the same symptoms as I did. We talked about them every time I saw her.  We would bring in magazine articles to show each other regarding the symptoms. We were wondering if it was that “Epstein Barr” thing that Cher had.  Cher had been on tv 5 years previously where she about her “Epstein Barr” illness that a doctor had found when she had a physical before she was going to be filmed in a movie.  We then saw that the “Epstein Barr” illness was being called Chronic Fatigue Syndrome.

So one day I said to the other nurse who I worked with at the Cardiac Rehab/my co-worker, I will go to my family doctor, tell him I think I have it and see what happens.  That is what I did.  The family doctor ordered blood work.  When I went back to the family doctor he said I had elevated active Epstein Barr titers, that I probably had the illness.

My family doctor said he didn’t treat the illness, but he gave some suggestions according to what he knew.  He said if I needed to sleep 14 hours, sleep 14 hours. Take vitamins, make sure I ate properly.  He asked me if I exercised. I said yes. He then asked me where my exercise machines were. I said they were in the basement. He said make sure the windows are opened when you are using those exercise machines because you need to get oxygen to your brain, that people with this illness don’t get enough oxygen in their brain. If you notice, he did not know about the exercise issue, which IS the problem with this illness.

When I went back to work after this doctor appointment and told my co-worker about it, we were sort of excited, she figured that she sort of got diagnosed too.  Every time we saw each other, we would talk about our vitamins, I think I remember that we even went to the health food store together.

At this point, when I had a flare-up of this illness, it would last 3 weeks. During those 3 weeks, I had to stay home from my one or 2 days a week from my Cardiac Rehab job.  If I had known what was coming ahead of me 8 months later, I would’ve modified my lifestyle even more. I still wasn’t educated regarding the exercise or “over exertion” which included how much I worked, because the literature wasn’t out there.  The only literature I saw, was that when you were tired, then you should take a nap.

There was a key item missing out of the literature, and that was exercise, aerobic exercise, as in NO aerobic exercise, graded type exercise, and exertion.  These missing items were and are a still huge huge problem that is the main disabling factor of this illness today.  I knew about the over exertion from my personal experience, when I over-did it, I got sicker, but I didn’t know that was a missing item in the literature or anything I could find about the condition at that point.  There was not any information about a symptom I had never even heard of at the time, and that symptom was called “Post Exertional Malaise.” 

End of 1993, at this point, I had 2-3 week crashes/relapses and I was dragging myself to work. My kids and I all got the “flu” and respiratory infections.  I went to an internist, I figured the internist would know a little bit more about how to treat me.  When I told the internist I had Chronic Fatigue Syndrome, he asked me when I was diagnosed with that and did blood work, gave me a prescription for antibiotics.  When I followed up with the internist the next week, he confirmed via my labs that I had active and elevated Epstein Barr titers.  I asked what kind of treatment is there for this.  He said there is none, that I would have to rest until I felt better.  I thought oh my, how long am I supposed to rest, this thing felt like it was not going away at this point.

January of 1994, 2nd week, I was still not feeling well, thought I would bounce back as I had previously.  I decided to work the day I was on the schedule to work at the same day surgery center I worked in one day every other week or when I felt well enough to work there.  The day I was scheduled to  frost the car to get to work. It took over an hour to get there.  Everyone was late including the patients, so it all worked out.  At this point I was also bringing my lunch with me to make sure I was eating properly. 

When it came time to drive home, the roads were a mess and the highway was a mess because of the ice storm, I had to drive slow.  While I was driving, it was time to take the anti-biotic that I was still taking that was ordered by the internist for the respiratory infection. As soon as I took that antibiotic, I felt like I was on fire, I looked in the rear-view mirror, I was actually red as a lobster. I thought oh no, im having an allergic reaction to that antibiotic. I was driving on the highway when this was happening. I opened up the window as I felt a bit short of breath and was actually leaning my head out of the window.  I thought, I need to find a pharmacy that is opened because when I looked in my purse I saw that I did not have my Benadryl with me as I usually did because I started experiencing allergic reactions since the previous year.

I got off at the next exit, drove one blog and there was a pharmacy. I went in to the pharmacy, right to the counter and asked the pharmacist where the Benadryl was, that I was having an allergic reaction.  The pharmacist handed me the Benadryl, and I took it right there before I paid for it.  I then got back into the car, figured I could make it home, but  I kept feeling like I was getting “hotter.”  I thought, nope, this allergic reaction isn’t going away.

I was near the last exit in Brooklyn before the exit to the Verrazano Bridge.  There was a hospital right off of that last exit. So I got off of the exit, parked the car, went into the emergency room.  There was a man standing there, he said sign this, and the will call you when they get to your name. I thought, what is that man crazy?!?!

An emergency room nurse then walked by I said im having an allergic reaction, she took a look at me and took me right in.  They gave me an injection of epinephrine and watched me for a while.  It always feels like you are in those places forever, I really don’t know how long I was in there. I do know when the nurse let me leave, it was still light outside and this was in the month of January.  So it had to be before 5:30 pm I would think.

It didn’t take long, I was 1/2 way across the Verrazano Bridge, which is about a 2-2 1/2 mile span, and I felt the fire again. I looked in that rear view mirror and I was red as a lobster again. I thought well, I cant turn around here, I have to keep going, and hope for the best.

I did make it home ok.  I was red as a lobster until 11 pm that night.  I was devastated.  I thought, this illness is here to stay and I am never going to get better.  A good friend of mine, who is also a nurse, whom I was talking to on the phone that night, I said, no on  knows how to treat me, this is awful.  she said let me make some phone calls, I will see what I can find as far as help.

30 minutes later, my friend gave me 3 phone numbers and one of the phone numbers were Dr. Susan Levine. I did have Dr. Levine’s phone number.  I had a copy of the Manhatten yellow pages. She was the only infectious disease doctor in the yellow pages at that time who treated “CFS” or “CFIDS”, I didn’t know she was a reknown doctor or a researcher doctor yet.

The next day I called Dr. Levine’s office and she actually answered the phone, she had an appointment opening the next week. I thought oh wow, how awesome is that, I do not have to wait for months. My first appointment was January 31st, 1994.

Then the treatment began!

The thing about the treatment…….The insurance paid at first, but then it didn’t.  The meds that made a difference were “off-label”, meaning, they were not approved by the FDA and you had to pay cash if you wanted them.

20 years later…..Those meds are still off-label.

None of those meds and the other experimental immune modulator Ampligen have been approved. I thought by now they would be approved. I thought 10 years ago all of these meds would be approved…..

Not one…..


It was the 10 year mark and $250,ooo later….no more money for off-label drugs and that was 2004.

Its 2014…..we still do not have those meds.

We have some things the insurance pays for, but not those. The immune modulators and immune globulin are what decreases or inactivates those viral titers and helps us as far as functionality, decrease of the crash time, and less to no infections.

Its 2014 and we still wait!

How much longer?

I don’t know, it doesn’t look like we are even close yet.

Nothing has changed 😦



My blog was part of the #May12BlogBomb hosted by Sally “Just ME”.

You can click HERE to check out some of the other blogs who are also participating in the #May12BlogBomb for ME awareness day!

Thankyou for stopping by and please spread the word for

May 12th ME Awareness Day!



Story image



“The Other Side Of The Stretcher” (c) 2014

 This blog is not for medical advice.
For medical advice, you must speak with your physician!


Continue reading


May is M.E. Awareness Month!


May is M.E. Awareness Month!

May 12th is the 22nd International Awareness Day!
founded by our friend Tom Hennessy back in 1992.
May 12th was chosen because it was Florence Nightingale’s Birthday.
Florence Nightingale was chronically ill and bedridden for the last 50 years of her life. It’s been said that she suffered from M.E.

What can you do to spread the word this month?

Here are a list of things that you can do to spread the word about M.E.!

If you haven’t signed the petition to Stop the IOM Contract and Adopt the CCC Defintion of ME/CFS, hosted by Pat from MECFSForums, click here to sign!

If you have a blog, this website “Blogging for ME/CFS Awareness” has a nice selection of badges like the one I have above where you can choose one or more to put on your blog.

May 5th is “Thunderclap to Oppose the IOM, Support the CCC: Let Our Voices be Heard Loud and Clear,”
hosted by Jeannette of “Thoughts About ME” that will announce the ME patient protest of the IOM redefinition of the diagnostic criteria for ME/CFS. If you haven’t joined, click here to join!

Sally of “Just ME” is hosting the May 12th Blog Bomb, if you have a blog, you can join using the hashtag #May12BlogBomb.
Visit Sally’s blog “Just ME” for more information!

Add yourself to the World Map for CFS and Fibromyalgia HERE!!!!

I hope this list has been helpful!

Thanks in advance for spreading the word for M.E. Awareness!


“The Other Side Of The Stretcher” (c) 2014


This blog is not for medical advice.
For medical advice, you must speak with your physician!