re Macular degeneration, and your opinions on LDN for MS

[Guest guest]

You're a wonderful friend Gerry.

I'm an unqualified community health researcher here in Oz, so first things

first ... G'day!

When I read your post, I wanted to understand what was happening a bit

better.

I did a quick search - very lightweight. My response reflects only some

initial thoughts based on the little I read (the reference I used is

below).

There's some reading material that may be of interest to your friend and

her doctor/s. I've included three of them below because sight can benefit

from LDN, but it can a take while.

My thoughts are ... with her sight at risk, and no treatment available

right now for her ...

there are some things she could be doing - if her doctor agrees.

Kind regards,

Cris

casehealth.com.au

(1) For her MS and associated issues, over the longer term:

The LDN Book: 'Those Who Suffer Much Know Much' contains

20 Multiple Sclerosis case studies

2 HIV/AIDS case studies

1 Hepatitis B case study

1 Primary Lateral Sclerosis case study

2 Cancer case studies

2 Crohn's Disease case studies

1 Multiple Benefits case study

The book also includes an explanatory article, and interviews with

professionals familiar with LDN - Dr. Gluck, Dr. Tom Gilhooly, Dr.

Jaquelyn McCandless, and Dr. Skip Lenz, Pharmacist. It is in the safest

format, Adobe pdf, and is available on casehealth.com.au free of charge. It

can also be freely shared forward.

(2) For her eyesight, in the short and longer term:

With her sight at risk, there are two stories in the Case Health database

that may be of interest. Go to casehealth.com.au and search the words

'cyst' and 'inflammation' to reveal the following two stories:

(a) Chalazion or Meibomian Orbital Cyst?

( Inflammation - Success with Omega Oils

(3) The Reference I read:

Retinal vein occlusion

The retinal veins drain away the used blood from the retinal cells. When

one of these veins becomes blocked then the used blood cannot drain away

properly. This causes the blood to 'back up' in the system. This blocking

and pooling of blood can cause the area to swell and may also cause areas

of haemorrhage (bleeding). These areas of swelling and backed up blood

damage the cells of the retina and therefore damage sight. Again, the

extent of the sight loss depends on where the blockage takes place.

Retinal artery occlusion

Unfortunately there is little treatment available for retinal artery

occlusions because the cells on the retina are very sensitive to a lack of

blood supply. A disturbance for any length of time in fresh blood to the

retinal cells will cause permanent sight loss. In some people the blockage

that causes the first sight loss may become dislodged and if the blood

supply is started again then some improvement in vision may be seen. Most

people however have permanent changes in their vision.

http://www.rnib.org.uk/xpedio/groups/public/documents/PublicWebsite/public_retve\

sselocclu.hcsp

12a. Macular degeneration, and your opinions on LDN for MS

Posted by: " Gerry Neustatl " bensdad@...

Date: Thu Oct 23, 2008 3:45 pm ((PDT))

Hi all,

This is my first time posting to this group. I joined because a close

friend

has MS and I wanted to know about therapies that may be available to help

her. I came across LDN after a Google search and joined this group hoping

to

gain some insight.

My friend has had MS for some 16 years and has recently experienced a

startling new symptom: blood is leaking from somewhere behind her eyes into

the eye gel. She says that her vision is affected because she sees

something

resembling an oil slick because of this collection of blood. Her

neurologist

and the eye specialists he has had her see claim that it resembles macular

degeneration seen sometimes in the elderly, but that they have never seen

it

in someone so young (she is 39).

The medical fraternity claim that there is nothing that they can do but

monitor it - that surgery would involve removing the gel behind her eye and

replacing it with a gas. But they are not prepared to do the surgery as

they

feel the chance of success is remote, and she would likely lose her sight

completely.

Apart from the 'oil slick' her vision is excellent (20/20). But if her eyes

worsen because of the blood leakage she might well lose her sight. Have any

of you come across anything like this and is there anything you might be

able to suggest/recommend?

With regards to LDN, it sounds promising but I am hesitant to recommend it

for her because the evidence for LDN is apparently anecdotal only - even

the

MS Society have apparently expressed concern that the manufacturers are

unwilling to put LDN through traditional clinical trials that would confirm

its legitimacy. What are your thoughts?

Her regular symptoms include optical neuritis, heat sensitivity, muscle

spasms and cramping (that she treats through. nonconventional means) and

come cognitive impairment. The first attack, some 16 years ago, left her

blind and immobile in hospital for 6 months. After learning to walk again

she rejoined the work force for about 10 years before relapsing in 2000. I

watched this relapse where she experienced persistent and severe muscle

spasms for many months. Her neurologist prescribed Baclofen, Tegretol and

Prednisone, and she started with Avonex injections. These didn't agree with

her so she tried Rebif beteferon, which also didn't agree with her.

For the last 8 years she has been in remission and (thankfully) drug-free

however she is experiencing some cognitive decline and now this attack on

her vision (which may or may not be MS related).

If LDN is likely to help her then I am happy to recommend it. What do you

think? What are your experiences with LDN? I appreciate your thoughts and

comments about LDN (or perhaps other treatments) - not the company

marketing

spin, just your thoughts - good, bad, side effects etc.

Thank you so much in advance, to anyone who can spare a few minutes on this

one.

Gerry