Doubts, skepticism, disclaimer...
Well I'm not on LDN, so I can't speak from personal experience...I'm working
on getting on LDN with copaxone, but right now it's Rebif injections 3 times
I have 3 medicines that I am looking at right now that make claims of stopping
MS progression. I hope to make a page of reading on the
... I think my goal is to identify successes in MS research and amplify them.
I'm not a doctor and I don't have experience in Biology. But I do have MS
and a Liberal arts degree from university, so I have learned how to learn,
I hope, and how to read. I'm not afraid to ask annoying questions.
Having worked as a computer programmer for the last 8 or 10 years, I am used
to representing and manipulating problems.
One thing that makes medical speculation awkward though, is that I
am married to a doctor, and I've been with her for nearly 20 years. I DO
NOT VOICE HER OPINIONS HERE. In fact, with a busy 2 and 6 year old, she's
been too busy to check the page out much... If over the years I have
drunken beer with her colleagues that only makes me knowledgeable in the
things Doctors say after they have been drinking, not medicine.
A recent study on marijuana use in England proves that drugs that are popular
with patients and high on the list at remedyfind do not necessarily help
I'm afraid that it may be possible in MS for the symptoms to get better while
the disease still progresses. There is just not enough MRI work on
LDN patients to know the real case on progression in terms of lesion growth.
I have grown weary of terms like 'immuno-modulation' or 'immune system up-regulating'.
I no longer see
the immune system as a quantitative score like you can say 'subject X is
60% immune'. Immune to what?
I don't even see the immune system as having a single 'goal'. We're better
off saying 'subject X's immune system
is Green' or 'yellow' than 47%.... I mean the quantity of NK cells is one
thing, but all we can say about the quantity of NK cells is that it's a measurable
thing that seems to relate. We're talking about a multi-factor ecosystem
balances, between cytokines and chemokines, and hormones that is REALLY complicated.
Anyone who claims to understand it is probably lying.
Just stating the above brings one into foggy philisophical questions about
what MS is. Although I have 3 cures I am studying that claim to stop MS,
don't you have to
know what MS is to know if it's stopped? In a way, just making such
a claim brings
your credibility into question.
Let's say it has nothing to do with Lesions and has more to do with numb
fingers and L'hermittes...ie: the clinical results are what is important
and WHAT MS IS.
This isn't bad. I read one article where someone
who works on MRI's guessed that 5% of people show some lesions on MRI. I
guess 98% of those people don't have MS in a way, because they never show
symptoms and never get diagnosed. Surely you couldn't put
a bunch of MRI's in front of some experts and say 'which of these people
have MS?' because it's a combination of symptoms and the MRI which make it
MS. Bihari has good evidence that the symptoms stop, but the actual
lesions aren't measured.
However, if the disease was still progressing in all of these people there
would have been a few attacks wouldn't there?
Not necessarily. If an MS patient from a cold area takes a vacation in Hawaii,
they will probably have tons of symptoms as a result of the heat. This isn't
making the disease any worse. Just staying cool will take that away. Disease
Progression Is NOT that related to symptoms felt. Perhaps LDN
is just like cold weather on those who are heat intolerant.
I say all this in the interest of keeping balance. When someone says '98%'
of people show no progression on LDN, and 30% on the CRABS it is not a fair
comparison. The CRAB tests have real Lesion comparisons done for the crabs,
while the LDN is only now receiving it's first lab testing for crohns.
Although for balance, I have to voice doubts, I find the approach with LDN
interesting. I can't help thinking that
the CRAB's just treat the symptoms of MS, and the LDN might be dealing with
the deeper glandular issues, but
that's just me, an MS patient, trying to turn it into something like a thyroid
condition. Or is it?
Think for yourself. Follow your instincts. But don't believe that the mounting
evidence that LDN works has mounted very far. Time will tell.