I have written three codas to the diaries on the web. The first was written in May 2000, when I was off Ampligen and
in wondrous remission. The second coda was written in March 2006, after a terrible relapse, a return to Ampligen,
and remission again. I was doing well when I lost Ampligen at the end of February 2008. So now there is a
third coda, written in January 2009.
First Coda: May 2000
I have done well since my last published entry to the diary. Yes, I did attend my son's wedding, and we had
the mother-son dance, something I would not have been able to do six months earlier. I wished I was well
enough to dance to the band like everyone else, but I was happy I got to dance with my son. I also stood
through the entire wedding, which was clearly something I could not have done before.
I have been on Ampligen for 15 months. I'm not certain how much longer I should remain on it. I originally
thought eighteen months would be the max; we will have to see. I still get occasional Ampligen presents. The main
reason I remain on Ampligen, however, is the fear that I could not go back on it if I had to - the fact that it
is still an experimental drug and I would have to have permission of the FDA. The argument to stop taking it
is mainly the cost, which is very steep. I do not know how long I can continue to afford it.
For some people there is a geographic component to the decision to remain on Ampligen. If you live close enough
to get Ampligen and remain at home, it's easier to stay on it indefinitely. Many patients move to an Ampligen site
- and then they are stuck with a more difficult decision, because remaining on Ampligen means remaining apart
from your family, your support network, your life. Although it's a nuisance to have to get to the infusion site
twice a week - and not be able to get Ampligen when I travel - it's still doable. People who moved to get
Ampligen have fewer choices than I did.
I would like to get tested for HHV-6a and the 37kDa RnaseL at least every two months, which is what Dr.
De Meirleir has been doing with his patients (or so they tell me). That is not so easy here in the
United States, however. But when I have been tested, I have remained clean for both.
I cannot stress enough that I am a sample of one. Please do not draw any great conclusions from my experiences.
Formal studies are currently being conducted by the makers of Ampligen, Hemispherx, in both the U.S. and abroad.
In the end, that is the information that matters. However, even a sample of one has some value: NO ONE can say
that "Ampligen is useless" - NO ONE can say that "Ampligen has never had a success story." I am living proof that
Ampligen has been useful to at least one human being and her family; living proof that there is at least one
Ampligen success story. Given the degree of illness I suffered; given that at least half a million adult Americans
(according to the U.S. CDC's unpublished statistics) and 800,000 Americans (according to the Jason et al study
published in the fall of 1999) suffer from this life-altering illness, I believe that just one success story
should be enough to qualify for "promising" according to the FDA Modernization Act of 1997; I believe very
strongly that bureaucratic objections to the way forms are filed should not suffice to keep this much-needed drug
from being fast-tracked to the next level of experimentation in the United States, where it could be tested for
Multiple Sclerosis, AIDS, and other illnesses affected by HHV-6, and where the current CFS/M.E. experiments in the
U.S. could be broadened to reputable research institutions. It is well past time this drug be "fast tracked" in
the United States, and to date no one has been able to offer a reasonable explanation as to why this has not taken
place. Right now, my hopes for Ampligen and my cohorts who are so desperately ill reside in testing now taking
place in Europe.
As I resume a somewhat-normal lifestyle - but always restricted; you cannot be as severely ill as I was, for so
long, and escape unscathed - I find I do not have much time to spend on internet. I wish I could answer all of
your emails, but I cannot. Good luck to all, and I hope these diaries may be of some help to those just starting
out on Ampligen treatment.
Second Coda - March 2006 -
I went off Ampligen in October 2000. By this point I was doing very well.
By the summer of 2001 I was able to walk on the beach, hike just a short distance on a trail
in the Rockies - far enough to no longer hear the sound of cars, far enough to see a waterfall.
I could drive, I could read, I could write. I had been able to volunteer at the AllStar games in Atlanta
and Seattle and did well; I had helped drive a car across the country to my daughter's campus in L.A. -
in short, I was functioning almost normally. The only thing that held me back was the length of time it
took me to get over illnesses that everyone else shook off in three days. It usually took
me up to three weeks to get over a cold, and while I had one, I was knocked completely out of normal
functioning. But I expected that to get better over time.
We moved into a new house that was better suited for an invalid (if, heaven forbid, that happened again), and
I did a lot of the packing and cleaning. Perhaps I did too much of it. I published an essay in an book edited
by my advisor at Hopkins and his co-author at Oxford, and I had contacted Villanova, where I was a tenured
associate professor, in the hopes of being able to return to teaching. I thought I could start out with one or
two courses, then move back into a full-time position.
Unfortunately, the period of good health came to an end.
Precisely one year after going off Ampligen, on October 6, 2001 - ironically, at Cal Ripken's last baseball game -
I collapsed again. Two weeks later Dr. Ablashi tested me for active HHV-6A, and once again I had a severe
infection. I could not get retested for the Rnase-L Factor because the only site for commercial
testing at the time was in Belgium, and after the tragedy on 9/11 of that year, it had become illegal to ship
blood specimens overseas (I have no idea why). However, the positive HHV-6A test was enough to know that I
needed to be back on Ampligen.
Fortunately for me, I was able to make contact with the highly-regarded hematology/oncology center at
Hahnemann Hospital in Philadelphia, run by I. Brodsky. They had permission for Ampligen 511 cost-recovery
studies and were willing to take me in. Unfortunately, it took 7 months to receive permission from
Hemispherx and FDA. During those seven months I deteriorated frighteningly. By the winter of 2001-2002 I was
back in a wheelchair; the peculiar gait accompanied by a dropped foot had returned, and both writing and reading
had come to a halt. When I first was wheeled into Hahnemann, I had to wear sunglasses because the ceiling
lights were too painful (I look up at them now and find that hard to believe, but it was true).
I finally returned to Ampligen treatment at the beginning of May, 2002. My brain is much better, but I have
trouble fighting off infections as before, and some physical problems secondary to M.E. have made my recovery
longer this time around. At least the cost is much lower this time around, only $20,000
a year instead of $40,000 a year I paid in 1999-2000 (the drug is $16,000; we figure we pay an additional
$4,000 for co-pays and required testing that the insurance company won't cover). We can live with it at
$20,000 a year - that is almost precisely my after-tax disability check, so basically we are living on
Bob's salary. With the children now grown, we can do it. I am keenly aware, however, that few of my friends
could afford to do this. Most of them are living on their own on disability incomes less than $20,000 a year.
So I have been very lucky.
As of May 2007, I have been on Ampligen for 5 years - or, another way to look at it, I have been on
Ampligen for 8 years with the exception of the one year off in 2000-2001. Thus far there are no
negative side effects, knock on wood. If there are long-term problems, I guess I will have to let you
My brain is back. I don't have trouble reading or writing, and I do not feel like a sick person 24/7 like
I did when I first fell ill with M.E. - and then after the relapse. However, I doubt if I will ever be
physically as strong as I was before. That's okay. I can do research and perhaps publish, and play with my new
granddaughter. I have a voluntary relationship with a research institute at the University of Pennsylvania, where
I can interact with other scholars and bright young graduate students when my health permits. It is a privilege
and I enjoy the opportunity. I have a port-a-catheter in my upper left chest, so I no longer have to get stuck
with needles twice a week (my veins just gave out after a while) - that makes this easier. It leaves my hands
free to type (or knit or do needlepoint, for that matter).
All in all I am definitely better than I would have been without Ampligen, but I do not think I will ever be
cured completely: I was too sick for too long for that to be possible. So, we do the best we can and are
happy with what we have been able to recover. More than anything, I do want people to know that your brain
can come back if given a chance. I also I believe that, had I had been diagnosed early in the disease
and gone on Ampligen back then, I would be completely well now.
It is now possible to get tested for the RNase-L factor at Redlabs USA in
Nevada, and they also can test for HHV-6, both variants. We now have a foundation for studying and
treating HHV-6A, The HHV-6 Foundation, and recently the
University of Nevada broke ground on the Whittemore Peterson Research Institute to study molecular medicine,
specifically the Rnase-L Factor and other immune defects found in ME/CFS, MS, AIDS, and cancer.
I hope that even though remedies are lacking, patients can get tested for both the 37kDa Rnase-L Factor and
HHV-6A so we can find out how many patients diagnosed with "CFS" actually have these severe defects that
leaves them, like me, vulnerable to the complications of long-term viral infections.
There is no other drug quite like Ampligen. Although it appears to work well as an antiviral, it's not like
other antivirals. Although it works well as an immune modulator, it is not like other immunity drugs. It
is a synthetic double-stranded asymmetrical RNA. I cannot believe it has taken this long to pass the FDA's
trials. We should be studying what it can do and how it works, not still trying to get it passed. But this
is true of so much with my disease. We just have to accept that some day it will be available, not only to
patients but to the research community as a whole.
I hope it can succeed, because I believe not only will it help patients with M.E. and CFS (the subset of both
who have the low molecular weight 37kDa Rnase-L, who have HHV-6A, or who have a low natural killer cell function) -
it will also help others with MS, cancer, and AIDS.
Third Coda - January 2009: Losing Ampligen again -
There was only one cloud on the horizon: I feared losing Ampligen. And on February 23, 2008, that fear came true.
After receiving a final dose that day, I was called and told not to come back. The head of the medical practice
where I was receiving my infusions died, and FDA made the practice re-apply. FDA then rejected the application,
and also rejected a second try. There is no place from New York City to Washington, DC, where I can get into an
open-label study and receive Ampligen. It is, for now, lost to me.
Last time I was off Ampligen, I had a year before my symptoms returned. I was not so lucky this time.
After Labor Day, 2008, the symptoms began. For three weeks I ran a fever, had a sore throat and swollen glands,
felt exhausted and felt awful. The week of September 21 I flew to Reno, NV, to see Dr. Dan Peterson at Incline
Village (my specilist since spring 2006). I stayed a week for a lot of testing. I was positive for Epstein-Barr
(EBV), some enteroviruses, and cystomegalovrus (CMV). My natural killer cell function was abnormally low, and the
results of my VO2 Max stress test (which tests how your body uses oxygen during exercise) were abominable: I scored
16, where a normal person my age should score at least 40, and an 80-year-old woman should score 20. We did a
SPECT scan, which had been normal while on Ampligen. This time the SPECT scan demonstrated decreased activity
in the left lateral temporal lobe and occipital lobes. Other symptoms are returning: confusion (brain fog),
problems with word retrieval, finding reading as exhausting as physical activity, and difficulty walking.
In November we began treatment with Vistide, an antiviral approved for treating CMV. A week after my third dose,
two major liver markers [AST (SGOT) and ALT (SGPT)] both shot up. In the three days between one test and the next, they spiked from
normal (0-40) to very abnormal (480 and 313). After two weeks they returned to normal, so we tried a lower dose of Vistide - but the next day, they
shot back up again. That means no more Vistide. There are still a couple of antivirals I could take, but we are running out of options. I really wish
I could go back on Ampligen, even though we paid so much for it. In the meantime, my health deteriorates.
Again, remember that my experiences are only those of one person. But it does show that there is at least one
person who experience dramatic improvement on Ampligen; there is one person who has been on it for nearly a
decade with no major side effects. Since there is no other drug on the market or in the FDA pipeline that is
targeted to my specific illness, I believe that is the definition needed to fast-track a drug. Even CDC admits
today that about a million American adults suffer from ME/CFS. Some percentage of these have at least one of
the three markers that indicate they would be helped by Ampligen - 37kDa Rnase-L, HHV-6A, or a low natural
killer cell function. Too many people are suffering needlessly. It is time this
drug was available to the public.
I have been a prisoner in my own body, for years at a time, twice in my life - and now I am going to have
to go through it again. Ampligen is the only drug I've ever taken that attacked the essence of my disease, and
I had no dangerous side effects. I would give anything to get it again. I don't understand the FDA taking it away.
I don't want to disappear.