Equipping People To Make Sense Of What They Are Told
Janet Taylor Dorset
MS Case Study - My MS - When we moved into the local area, I had just had a two week
stay in a hospital resulting in me being on a concoction of drugs including very
high dose morphine which was certainly turning me into a zombie and probably was
killing me.
I had rejected the option of having my spine cut chemically. None of the drug treatments
dealt in any meaningful way with the severe back pain resulting from the interaction
of MS spasms with a separate back problem. A local GP helped me go against written
advice of a neurologist and back surgeon to wean me off their prescribed drugs and
attempt to achieve some improvement with one of the now infamous Cox2 Inhibitor drugs.
This left me again in my right mind although still with serious back pain. I trawled
for hours on the web to try and find some solution.
I eventually discovered LDN and took some time to persuade David to research it as
over the years we had looked at several "miracle" cures/treatments for MS. The only
one we had tried was the Carrie Loder protocol, which I found to be totally ineffective.
I then persuaded my GP to write a private prescription for LDN in May 2004, within
four days my life changed completely. Having had difficulty travelling locally in
the car and being totally housebound , I could travel freely.
It took us about six months to get the dose of LDN right and find an alternative
solution for my back problem (by initially using electronic pain control and then
finding magnets to be helpful). Since sorting out the correct dose of LDN for myself
and resolving the back pain problem using separate mechanisms I have had NO further
progressions of MS. I have managed to reverse my condition to a considerable extent
by the use of other immune system boosting techniques.
In summary therefore;
LDN and magnets have replaced a horrifying concoction of dangerous drugs that had
turned me into a zombie and might have killed me by now.
No health professional in now suggesting I submit to having my spine chemically cut.
For the newly diagnosed MS person LDN would appear to be one of the first medications
to try.
Mrs Janet Taylor
2010 - Janet is still using LDN and her MS situation is stable.
Comment
I think my comment on this would be that my perception is that LDN is very effective
in percentage terms at stopping disease progression and not very effective at symptom
improvement. LDN is in my wife's case very dose critical and did do harm at 4.5Mg
which may have been permanent if we had stuck with that dose.
The problem is no one will do a truly random survey, this could only be done by the
medical authorities who clearly are not interested in doing so. Linda's survey suggests
a success rate in the region of 90% but of course her results as presumable are yours
are based on those who volunteer to give evidence and therefore not random. The other
problem is that the random survey would need to be done on those who have chosen
LDN as the only therapy, which would now exclude us.
I think part of the way LDN is being rubbished by vested interests is to get those
to regard it as a therapy with symptomatic benefits and thus when those find they
receive no symptom improvements they drop it.
It is interesting to note that both the clinical trials on LDN have only concentrated
on symptom relief and not adjusted the dose to the individual. Whilst they have both
been successful to an extent still no one is testing on disease progression with
a dose adjusted to suit individual participants.
After the licensing of Naltrexone for treatment of heroin addiction in 1984, Dr Bihari,
a neurologist working with New York drug addicts, went on to develop a treatment
for Aids using low doses of Naltrexone, which he subjected to a small but successful
clinical trial. He then offered LDN as an experimental treatment for MS, seemingly
with great success, and patented this application in 1987. LDN is now in widespread
use around the world and is believed by many to be the most effective treatment for
MS currently available.
LDN as a treatment for MS has been recognised in a written answer to parliament (2.3.05
Dr Ladyman). There have been two conferences in the USA where health professionals
have given their clinical experience of using LDN to treat MS. The results of surveys
of patient experiences have been published on the web. An independent medical article
by YP Agrawal states that anecdotal evidence is absolutely overwhelming. It is clear
that LDN does not work for absolutely everyone. However anecdotal evidence suggests
that halting the progress of MS is a reasonable expectation for very many sufferers.
But what is the scientific evidence?
First, I guess, it is reasonable to ask what scientific evidence is anyway. The normally
accepted benchmark in the medical community is that of clinical double blind trials
- and indeed LDN has now been tested in a small, formal, double-blind trial in Germany
concluding with a recommendation of its use for MS. However, double-blind trials
have their drawbacks. Some drugs have such evident side effects that some or all
trial participants may be aware who is on the treatment; thus negating the elimination
of placebo effect.
The Cochrane Collaboration makes this point with their analysis of Copaxone trials
for MS. Another obvious drawback is the cost. Any treatment that cannot make a reasonable
return for the sponsoring company will not be tested however impressive it appears.
Once a drug has been licensed for any purpose it may well be used off label for other
conditions - the case with many current treatments for MS. A recent article for the
British Medical Journal stated that 47% out of 2500 treatments surveyed were of ‘unknown
effectiveness’, indicating that use of off-label prescribed drugs is quite extensive.
The safety of Naltrexone in large doses is proven - most conclude that in small doses
it would be even safer. Clearly long term safety cannot be guaranteed, but then products
with known safety issues are now licensed for the treatment of MS. In any case, accuracy
of reported drug safety data has come in for serious criticism recently from respectable
sources such as Panorama and a House of Commons Health Committee report. So is the
evidence for using LDN to treat MS sufficient to take the seemingly low risk of using
it? A personal choice I would suggest, but it would certainly be first on my list
to try.
I think my additional comment on this would be that my perception is that LDN is
very effective in percentage terms at stopping disease progression and not very effective
at symptom improvement.
LDN is in my wife's case very dose critical and did do harm at 4.5Mg which may have
been permanent if we had stuck with that dose. The problem is no one will do a truly
random survey, this could only be done by the medical authorities who clearly are
not interested in doing so.
Linda's survey suggests a success rate in the region of 90% but of course her results
as presumable are yours are based on those who volunteer to give evidence and therefore
not random. The other problem is that the random survey would need to be done on
those who have chosen LDN as the only therapy, which would now exclude us.
I think part of the way LDN is being rubbished by vested interests is to get those
to regard it as a therapy with symptomatic benefits and thus when those find they
receive no symptom improvements they drop it.
It is interesting to note that both the clinical trials on LDN have only concentrated
on symptom relief and not adjusted the dose to the individual. Whilst they have both
been successful to an extent still no one is testing on disease progression with
a dose adjusted to suit individual participants.
