Internaf members NAC experiences

1998 NAC Updates

Subject: NAC and my daughter
Date: Mon, 12 Jan 1998
From: Marilyn Downing <Mdown4@aol.com>

Our daughter Bridget, age 11, has FRDA and has been taking NAC for about 9 months now. I do feel strongly that it has made a difference. Within about a month, we saw a marked improvement in her balance. She could stand in place for over two minutes and could even stand on one foot for a couple of seconds. Her energy level definitely increased. She has been fairly stable with some decline in her gait in the past year, but the neurologist, when testing her last week, noted no noticeable change in vibratory sensation or proprioception. We recently nearly doubled Bridget's dosage but, at the suggestion of the pharmacist, decreased it slightly when we noticed some regression at the higher levels. It made a difference within a couple of days. She is also on Vitamin E, lipoic acid, selenium, zinc, B2, magnesium, and CoQ10. She has some slight scoliosis and no cardiomyopathy.


Subject: NAC
Date: Thu, 22 Jan 1998
From: BRUCE_OLSON@ccmail.udlp.com (BRUCE OLSON)

We have two children, Aubrey, age 11, and Nicholas (Nick), age 9. Both
children were diagnosed with FRDA on February 14, 1995. They have been on NAC and vitamins (Magnesium, selenium, B2, E, and a multiple) for about 1* years, and just started CoQ10. We changed brands of NAC about6 months ago. Since that time, the children have been taking slightly more NAC than prescribed. There are a fair number of instances (avg 2/week) where they completely forget to take one of their two daily doses. We've seen no benefit while on NAC/vitamins other than they seem to get less colds. Also, their cardiologist has not noticed any progression of cardiomyopathy for either of the children over the past two years. We have not noticed a change in the rate of progression of FRDA, before or after starting NAC. However, we have never taken them off of NAC to see what would happen. They have both had progression while on NAC, and for Nick, it has been significant progression. 

Aubrey's balance has gotten worse, and she falls more often and fatigues sooner. Nick's walking has gotten worse, and he is now very dependent on his AFO's/walker or wheelchair. Nick's speech has degraded significantly, and he now has nystagmus which is causing reading problems. His scoliosis has also progressed.


Subject: NAC
Date: Tue, 3 Feb 1998
From: Valerie Bennett <ValCN@aol.com>

My son Phillip is 13 1/2 years old and has had his FRDA confirmed by
genetic testing. He started on NAC and other recommended supplements in January of 1996. Phillip's neurologist put him on MucoMyst, which was the only form requiring a prescription, and thus covered by our medical insurance. I saw no noticeable improvements, but Phillip was fairly stable in the first half of 1996. In preparation for summer Scout camp, I switched Phillip over to GNC brand of NAC in capsule form. I observed an improvement in Phillip's balance. I kept him on that form for most of a year, until GNC quit carrying it. I then tried other brands but observed a deterioration in his balance. Just last month, I discovered that GNC had reintroduced their NAC. I immediately switched him over, and even though he was recovering from a nasty flu that really wiped him out, I felt he rebounded more quickly than normal. He is also taking CoQ10 and Lipoic Acid. Phillip has had absolutely NO adverse effects from the NAC and other supplements.

Phillip has definitely deteriorated in the 2 years we have had him on
this program, but he has no trouble swallowing (and does not choke or
gag), seems to have good circulation, and can still be quite well
understood vocally, in spite of the fact that his overall mobility has
deteriorated to the point that now he is sometimes using a manual
wheelchair to help him get around. Considering what others have
reported, I have the impression he may be doing better in those areas
than others at the same stage of loss of mobility.


Subject: NAC
Date: Sat, 7 Feb 1998
From: Suzanne Brothers <brothers@alltel.net>

My son John has FRDA and has been taking NAC since March of 1996. He is 16 years old. When he runs out of NAC, which has happened several times of late, he says he can really tell the difference. He is tired, falls
asleep at school, and says he feels like he stumbles more than usual.  My daughter Laura is 11 years old and also has FRDA. We have not had
much luck with her taking NAC. It really upsets her stomach. We have
tried several times with no luck. She has a hiatial hernia, and that is
probably the problem. My son John does not want to quit taking NAC for
any reason. We get our NAC from the health food store. It is called
NOW brand. We have no insurance that covers medications. We have found that NOW brand seems to work just as well as the compounded capsules we got from 1st America Drugs.


Subject: Aaron's NAC update 1/98
Date: Sat, 10 Jan 1998
From: Kittel Family <kittel@webaccess.net>

My son Aaron, age 21, has been taking compounded, sustained-release NAC since January 1997. The supplemental vitamins he takes are One a Day 50 Plus and natural Vitamin E. His FRDA was confirmed with a
DNA test in March 1997. After 2 weeks, he and I both noticed that he
was stronger and more steady on transfers. After 3 months on NAC, on a
visit home for spring break, I noticed that he was seldom coughing or
choking during mealtime. Previous, he would cough sometimes at every
meal and choke occasionally. We are pleased with the noticeable results and the HOPE that the NAC is slowing his progression. Aaron's
neurologist, Dr. Stephen Ringel at the University of Colorado Medical
Center in Denver, sees him every 6 months to monitor his magnesium level and to check his blood chemistry.

Aaron's sister, Allison (Allie), age 6, was diagnosed with FRDA in
August 1997. She started compounded NAC in October 1997. She also
takes Vitamin E and selenium sprinkled in applesauce. I haven't found
magnesium or Vitamin B2 (Riboflavin) in the amounts recommended yet. 
Allie's visible symptoms are almost non-existent, so for now we only
have the HOPE that NAC and the vitamins will slow her progression.


Subject: NAC
Date: Mon, 2 Feb 1998
From: Linda Nunnery <Windey@aol.com>

My daughter, Robyn, age 24, has FRDA. She was diagnosed at age 11 with the heart condition (cardiomyopathy) associated with FA.. She started taking NAC and CoQ10 approximately April 1996. Lipoic Acid was added a few months later. She was already taking Vitamins E and C, Primrose Oil, Garlic, and a multi vitamin/mineral.

Improvements Noticed in the Beginning:

1. That summer, she felt mosquitoes biting her legs. Before, she only
felt them when the bites started itching.
2. Her handwriting was smaller and neater.
3. Foot placement improved. When climbing stairs from her basement
apartment to our kitchen (with rails, of course, and someone behind
her), we noticed her foot placement on the steps to be much better.

Since that time:

1. She had an echocardiogram done in May 1997, and the cardiologist
reported shocking news - the "thickness" (which they said would increase in size - never decrease) was normal size! The blood flow was better than the average person=92s - and best of all, there was no sign of weakness of the heart! Her last echo was 2 years ago when she was
hospitalized for serious heart problems. Now, her heart symptoms have
basically disappeared! A miracle - or CoQ10 ? !
2. Robyn's energy level has increased tremendously. Before NAC, she was sleeping 12-14 hours a day and then napping a lot. Now she is going to junior college full time with energy to spare for other things!
3. Foot placement improved more. While assisting her walking, her feet
go directly in front of her. Also, if assisting her bending over from
standing position, all I have to do is barely touch her waist and she is able to make it. It is almost as if just having the security of knowing my hands are there to catch her is enough!
4. Before NAC, when her neurologist moved her big toe up and down with her eyes closed, she did not know which way it was going. A few months after NAC, she got it right about 30% of the time. The last time she was tested, she got it right every time! She also had sensation in her legs where she didn't before.
5. A couple of weeks ago, one of her counselors was here to visit. Just
before the counselor left, she turned to me and said, "Is it my
imagination, or has Robyn's hand and arm coordination greatly improved?
It is my hope that we can somehow persuade insurance companies and
Medicare/Medicaid to cover the costs of these antioxidants. I am neither a doctor nor a scientist, but I do know what I've seen with my own eyes. There is Hope!


Subject: My NAC Update
Date: Fri, 6 Feb 1998
From: =93Sally Q. Smith=94 <sqsmith@surfsouth.com>

I was diagnosed with FRDA at age 13, and my diagnosis was confirmed
through genetic testing in February 1997. I am age 26 now and have been taking the NAC and vitamins since September 30, 1995. CoQ10 was added to my regimen about two months later. After 3 1/2 weeks of taking NAC, my speech, which was becoming slurrish and nasal-sounding, was noticeably clearer. My friends and family have commented throughout this time that my speech is still improving. My friends and family also noticed in January 1996 that my nystagmus (jumpy eye movements) had decreased. During my last visit to the neurologist in May 1997, he said my eye movements were now just a mild ocular overshoot. I neither have the cardiomyopathy nor the diabetes that are associated with FRDA.

I began Physical Therapy at the University of Florida in March 1996. 
Four months later, I noticed that taking one hand off the walker and
raising it as high as I can, or bending over to pick up an object, or
simply shaking someone's hand were easy to do. I still have "good" days
and "bad" days, but I can do these things even on the "bad" days. I
have better balance on =93good=94 days and even feel more secure walking (using my walker) in very dim-lighted or dark rooms. Also, when riding my manual three-wheeled cycle, I am confident when turning around in narrow places, riding around in very narrow circles, and riding around curves at a moderate speed without using brakes. Last year, I didn't attempt these things for fear of losing control and/or falling off.

This past year, I learned to drive a car with hand controls and was able
to renew my Driver=92s License! I drove a car without hand controls until age 19 and thought I would never drive again, but with the improvements, especially in my eye movements, I am, once again, able to drive a car. 
In other improvements, typing is a little faster than last year, and I
can often type words without having to keep my eyes on the keyboard. 
Handwriting is even neater and smaller, and definitely more controlled. 
Last year, sometimes my pen would leave the paper when I wrote certain cursive letters, and that rarely happens now. On an interesting note, the lady who cuts my hair says it's in better shape than ever! For
example, having split ends has always been a common occurrence , but I haven't this problem at all since starting the NAC therapy. She
attributes this improvement to these antioxidants and vitamins.


Subject: NAC
Date: Fri, 30 Jan 1998
From: Jamey McLoughlin <jameym@usit.net>

I just turned 27. In September of 1984, my diagnosis of FRDA was
confirmed by Dr. David Stumpf at the University of Colorado Medical
Center in Denver. I started taking NAC in October of 1996. It has
helped with my =93shakes=94 and coordination. My hands tremble when I mess with something tedious, like playing the organ in the church where I go. I feel the NAC has helped to stabilize the shaking, and my organ playing has improved. I feel overall a little more energy now because Ijust feel like doing more. My friends have commented on how my speech is clearer. I go for a physical once a year. They do blood work and an EKG then. My heart is normal, and blood sugar is also normal. I also take Vitamin C & E, and Amantidine.


Subject: Re: NAC
Date: Wed, 28 Jan 1998
From: John Olav Hovsbakken <hovsbakk@online.no>

I'm 32 years old and have FRDA. I started on NAC and the other vitamins
in November 1997. I started with sustained-release NAC capsules, and in
a month, I had a big improvement in my voice. My brain seemed to work faster and clearer. I mean that fast things are much easier to follow, and my mind is more focused (better concentration). In January 1997, I started with a cheaper brand of NAC that wasn't slow release, and I didn't notice any improvements. My neurologist thought that my voice was still getting clearer and faster. She prescribed Mucomyst in April 1997. I also started with CoQ10. In addition, I take the vitamins and some amino acids It seems to me like everything is a bit easier. I
feel good overall, and I haven't been sick at all this winter.


Subject: NAC Update
Date: Mon, 26 Jan 1998
From: Christine Krause <matchris@mindspring.com>

My name is Christine Krause, age 38, and I was diagnosed with FRDA 17
years ago. I have been taking NAC since October 1995. At first I was
taking the liquid with noticeable improvements then switched over to the tablets from Jarrow soon after with the same results. NAC has made a big difference in my FRDA. Progression seems to be very slow. At this
point in time, I would have to stop taking NAC to see exactly what
differences there are without having it in my system.

RESULTS:

Do not choke much
Knees do not get as tired when standing for a long time
Do not get as fatigued
Voice much better sounding and able to respond quicker
Typing is better
Able to write smaller (much improvement overall in writing, mostly
printing)
Steadier (Not as ataxic)
General overall feeling of wellness

I know NAC is making a difference in my FRDA, and I hope I never go back to how I was before my taking it.


Subject: My NAC
Date: Tue, 20 Jan 1998 =

From: Suzanne DeHaan <SUZDH@aol.com>

I am age 41 and have FRDA. I started taking NAC on 9/1/1997 under the
supervision of my neurologist at the University of Chicago, but it took
us a month to get the magnesium and everything straight so I didn't feel
sick. My results are as follows.

1. My head is definitely clearer. I don't feel like it is "full of cotton" all the time.
2. I am less stiff and have less pain in my joints (knees in particular).
3. I have more energy and feel that I have more strength and endurance
in my legs.
4. My balance is better, particularly in the morning. I use to lose my
balance and fall several times a day. Lately its more like once a week.
5. I wake up easier in the morning (and faster).
6, My hands and feet are warmer and my hands don't feel as ataxic. =

SOMETIMES my handwriting is better.
7. I choke on my food less and feel my voice is stronger.
8. I have heard things that I never heard before. I can hear the bus
as it comes down the lane to pick up my kids. I can hear the garage
door open when I'm in the kitchen. I heard a train coming down the
tracks from 1/2 mile away. I heard the pages of a book being turned in
a quiet library. All of this seems normal but they were new experiences
for me. None of this is consistent. I still turn the radio way up in
the car to hear the news. However, I did make my husband turn the
stereo down the other day because it was too loud.

I am also taking CoQ10 and PCO Phytosome. I realize this therapy is
merely a treatment and not a cure, but I finally feel there is some hope
in dealing with this disease.


Subject: Re: NAC
From: Joel Muranelli <muranell@aecom.yu.edu>
Date: Sat, 31 Jan 1998

I am age 43 and have FRDA. I started taking NAC on November 22, 1996. =

The following Thursday was Thanksgiving. That was the first meal I had
in many years that I did not choke. My improvement in choking and
swallowing has remained, as well as my ability to tie my shoes on the
first try, write smaller and with more control, change the station on
the radio while driving, and even throw balled-up paper in a waste
basket that is 6-7 feet away. In August 1997, I went to see my
neurologist for the first time since starting NAC. At that time, I had
been taking NAC for 9 months. As usual, I was going through my
coordination tests. When I got to the test where I have to touch the
tip of my nose with my finger, my neurologist stopped me and called
another neurologist in from the next room to watch me perform this
test. He told the other neurologist that I could not touch my nose for
years, and now I could. He seemed genuinely happy about this
improvement. This episode made me believe in the efficacy of NAC more than anything else I've read or experienced. Speech also seems to be easier. I can say certain words that I had trouble with before. I
think right now that I have hit a plateau with NAC. Although I have not
seen any changes in recent months, that could be positive. Because FA
is a progressive disease, not getting worse is a plus. These
improvements are now a part of me, and I can't imagine losing them.

My sister started taking NAC about a month after I did. She is 13 years
older than I am and has FRDA more severely. She spends most of her time in a wheelchair. Before starting NAC, she says she used to fall every day during wheelchair transfers. Since she started NAC, she hasn't
fallen in a year. Also before NAC, understanding what she was saying
was very difficult. Now, she speaks much clearer. She still notices
improvements in her choking and swallowing, and also in her
handwriting. She says her vision has improved immensely.


Subject: NAC =9198 Results
From: =93Judy B. Cox=94 <jbcox@bigfoot.com>
Date: Sun, 8 Feb 1998

Over the past year, my neurologist Dr. Brady significantly increased my
daily dosage of NAC. After my clinical examination in November 1997, he told me that even though we both knew my FRDA was continually
progressing, my exam results were about the same as they were when I
started NAC in September 1995! In the past 3 years, my general health
has remained quite high. The other FRDA patients who are in my age
bracket and are not taking NAC show noticeable signs of progression.

Their very slurred speech is markedly noticed and commented on. Also,
they always complain of their slow typing skills and coordination.

While these things are not improving for me, they are not getting worse, either!

At my age (my 45th birthday is in a few weeks), I have learned patience
with my own body movements. However, to survive in the world today, one MUST have clear speech and some typing skills mixed with lots of
computer savvy.  I am so happy to report that the NAC has helped me in these areas! While I realize I am extremely lucky not to have the serious side effects, e.g. cardiomyopathy, that FRDA can produce, I
often wonder if NAC is not protecting me from those terrifying ordeals.


Subject: NAC
From: "Cecelia Urbanski" <iksnabru@harborcom.net>
Date: Mon, 5 Jan 1998

I am age 57 and have SCA 1. I've been on NAC for about a year and a
half. My doctor didn't think it would do anything when I first showed
him an article. He said that a medicine that helps so many things is a
questionable claim, but he wrote me a prescription. I was on NAC for
about 3 months before I noticed any improvement. Slowly, over the
months--first I wasn't dropping things as much, I could read faster,
talk better, move a little faster, and after about 10 months--NO MORE
CHOKING OR LARYNGOSPASMS. That was great! I can get a little liquid or solid "down the wrong pipe" and not get any laryngospasms. My
handwriting has become a little worse, although it had improved. Also,
I have noticed that I'm beginning to drop things a little more, but
still the worsening things, i.e., handwriting and hand clumsiness, are
not as bad as before I started on the NAC.

Recently I purchased a three-wheeled walker to use when covering a
distance without my husband to help me. The cane which I had been using (when I go out from my home) was not enough anymore. For instance, I wanted to go to a certain store which was temporarily relocated, and I had to go down a very long hall to get to the temporary doorway. I used my walker. I never would have made it with my cane alone, my legs would have gotten too fatigued and collapsed under me. Every so often I get a strange sensation (a little like a pain, but not quite) in one of my legs, along the shin, the thigh, or the knee, and then my leg collapses under me. The last few weeks have been better, and I haven't needed to use the walker, but my legs become quite fatigued with little effort. 

All in all, I would say that the NAC is still helpful as far as preventing laryngospasms and some improvement with the restless legs.

If I cut out the NAC, the restless legs get worse within a few days.


Subject: RE: NAC
Date: Fri, 9 Jan 1998
From: Ana Acosta Denman <Ana.Denman@wsnelson.com>

Both my mom, age 60, and I, age 34, started seeing Dr. Michael Wilensky
in May of 1996 and were diagnosed with SCA 2 (Cuban Ataxia). We have
been on NAC since September 1996. My energy and activity levels are
still good. I still run and am quite active with my horses. I don't
fall as much or trip and it seems I have not gotten any worse; which I
think is great. My mom on the other hand has not worsened as fast as
she used to but does continue to progress at a much slower pace. When
we saw Dr. Wilensky the last time, he noticed improvement in my case but not my mothers.

With me, Dr. Wilensky saw improvement in strength of the left part of my body. That is my dominant side, therefore my weaker. Also, I was able to walk straighter than before. He did a series of tests (i.e.,
standing on one foot, etc.) and my results were better than last
years. I exercise alot, so he's wondering if muscle memory has
anything to do with it also. He feels my mother was started on the NAC
too far progressed into her disease. She has had some deterioration
within the last year, but it hasn't come as fast as it did before. He's
not sure whether or not it's the NAC controlling the rate of
deterioration.