re LDN, Crohns, and Eye Problems

[Guest guest]

Hi Dave,

Sorry to hear you've had a setback.

I've always taken Cod Liver Oil and Evening Primrose Oil, but as I've aged and

been more inactive of

late

(too much time on computer) I've had inflammation issues which cause pain.

I've personally had a lot of success lately reducing inflammation after

introducing Fish Oil, then

later Flax Seed Oil to my regime - big time! Just one capsule of each daily and

I can't say for sure

whether one or the combination did it, but my shoulder and arm pain has improved

outasight (slang)

since I added the flax seed oil.

I began taking flax seed oil after my husband's eye problem began last December.

He doesn't have

cataracts, but his story might be of interest, so I'll share it:

My husband's eyesight has always been 50/50. He woke up one day late last year

with dramatically

altered vision acuity in his right eye - left eye was fine. He couldn't read

anything without

closing his right eye.

When I had a look, he appeared to have a small raised area on his top eyelid at

the back near the

fold. I was concerned because his sight was impacted but especially because it

was so sudden. I sent

him off to

the doctor but I wasn't allowed to go with him (he's a big boy hehe!).

The doctor didn't even acknowledge the slight bump on his eyelid or examine it

after my husband

mentioned it - no questions on patient history - just wrote a referral to an eye

specialist. Well,

eye specialists appointments are hard to come by - two month wait. I had to

remind the doctor's

receptionist his vision loss had occurred suddenly - so they found a spot for

him.

Again, he went by himself. Doctor applied drops and used equipment to check the

front of his eye -

nothing to indicate what had caused the problem - again, the doctor didn't ask

questions regarding

patient history - again the doctor didn't acknowledge the slight bump on his

eyelid or examine it

after my husband mentioned it. He was referred to a second eye specialist in the

same practice who

checks the back of the eye.

For me, however; there had to be a link between the bump and vision problem

because they occurred

around the same time - so I did some research - a little tougher than I'd

experienced in the past

because most of the info was in medical jargon rather than layman's terms.

Everytime I read

something I had to research the terminology to understand the gist of it.

My husband went to his second specialist appointment (his third doctor

appointment). I went but

waited outside.

The doctor applied drops and used equipment to check the back of his eye - a

minor unrelated genetic

anomaly was noticed but nothing to explain his vision loss - again, the doctor

didn't ask questions

regarding patient history - again the doctor didn't acknowledge the slight bump

on his eyelid or

examine it after my husband mentioned it. My husband was a little more insistent

on this occasion

(knowing I was directly outside and would quiz him when he came out LOL) but the

doctor dismissed

him with another referral - this time for a fluorescein angiogram (injection of

fluorescent dye into

bloodstream so angiogram can pick up abnormalities). He was to have the test and

come back.

Fluorescent dye is considered harmless for the purpose of these types of tests

but I'm not

personally convinced. Depending on the source fluorescein can contain thimerosal

or sodium azide as

anti-microbial preservatives (in minute quantity). Long-term, follow-up studies

may exist on people

who've been injected with it - but I'm not aware of any.

We were very concerned. After three doctor appointments, not one doctor had

asked questions on

patient history, not one had examined his eye to actually even look at the

slight bump at the back

of his eyelid, not one had offered diagnostic possibilities or told him what it

was they were

looking for.

By the time he'd had his third doctor appointment, I'd put some possibilities

together from my own

research.

We (I was allowed to go in this time) took ourselves to a different general

practitioner. I shared

my theories which were along the lines of - blepharitis/eye gland cyst (possibly

Meibomian,

sometimes called chalazion). The doctor did not know what I was talking about -

said he had never

seen or heard anything like what I was talking about. Fair enough if it's a rare

condition. I was

polite but frustrated because again, no questions on patient history, no

examination of the eyelid.

I told him my husband had a history of cysts and teenage acne - and that this

was why I suspected he

had a cyst in the back of his eye - but that I also wanted to be sure he didn't

have blepharitis

(eye infection) - so the doctor humoured me and took some blood for testing.

This fourth doctor

still did not examine my husband's eye until after we'd both risen to leave and

the door was

opened - but only because I kept bringing it up - and he didn't say a word.

By now my husband had been to four doctors, two of them specialists. My poor

husband during all this

was still working and trying to function whilst not being able to read without

great difficulty -

whilst wondering if he'd ever recover his vision loss - whilst wondering if he

had developed a

tumour behind his eye or something fatal.

The next day we learned the blood test was clear. Okay, I thought - no infection

- looks like we're

dealing with an eye gland cyst. Based on my research of treatment options he

considered the path

he'd take - and it was extremely difficult to do that. He was alone in his

decision - have the

angiogram and go back to the specialist with the likelihood of eyelid surgery? I

was worried because

the options he was considering included my research - and hey, I'm not medically

qualified.

What if I was wrong? I could be responsible for either his vision deteriorating

further, or worse,

getting to a point of no return. How could I live with that? Rest assured I made

sure he understood

all the options because he had to be fully informed and it had to be his own

decision - and he

completely understood the possible ramifications of whatever path he chose.

He didn't like the idea of putting fluorescein into his bloodstream if it wasn't

absolutely

necessary. Neither did I. My research on treatment options had turned up heaps

on

anti-inflammatories and eyelid surgery, but the path he chose was the more

obscure, conservative

option.

If you're prone to cysts they can recur again in the future - anywhere, anytime.

The idea of having

to go through tests and surgery again in future was another factor he considered

before making his

decision.

The conservative treatment option was going to take longer because it involved

warm compresses,

eyelid massage, and flax seed oil - but this is what he chose and committed to

do. NB We always had

a fallback plan. We agreed on a window of two weeks - no improvement, back to

the doctor - no

continuing improvement, back to the doctor.

Long story short, my husband's vision improved slightly after one week of

conservative treatment,

and has continued to improve. He developed his own way of measuring improvement

in his long range

vision based on a long hallway at his office. He reached the first level of

improvement in

long-range vision in one week and he's now at level 5. His short range vision

was not as bad, but

recently it too showed improvement - crisper images. His improvement has been

slow and in stages,

but I'm happy to say he hasn't experienced one setback.

When you're busy, work, have kids, etc, it's hard to add another routine so he's

often slipped down

to 2-3 compresses a day instead of 4. I truly believe his improvement would have

been faster if he'd

kept it up as he did in the first week. He still applies the compresses but not

always 4 times a

day. He applies emu oil to his eyelid after each hot compress and he takes flax

seed oil capsules 3

times a day. I also put him on Vit C (just in case an infection was lurking

somewhere).

So I guess I've just taken the very long way around (again) to suggest that

supplementing your diet

with flax seed oil capsules could be one way (of many) of reducing your

inflammation after you come

off the Prednisone - but you'll need to check in with your doctor on that due to

your Crohn's.

Regards,

Cris

5. LDN, Crohns, and Eye Problems

Posted by: " Dave Doll " dolldave@... doll60

Date: Fri Feb 16, 2007 11:57 am ((PST))

Well, here's a new twist:

My eyesight in my right eye has deteriorated in the last week. The

opthamologist looked at my cataracts and immediately referred me to a

retna specialist. It seems that I have inflamation, apparently caused

by the Crohns which has built up a mass in the eye and detached and

slightly torn the retna. They think my coming off Entocort last month

might have triggered it. Meanwhile I'm now on Prednisone (80mg) for a

while to reduce the inflamation so the retna can heal and re-attach. I

will continue to take the Naltrexone(4 1/2mg) in the meantime. I don't

think this has anything to do with my taking LDN but I think anyone

developing eye problems while on LDN, should be aware of my

experience.

Dave D

Age 68

On LDN since 12/06

In remission

[Guest guest]

Cris

Be aware that there can be some not so good effects in taking flaxseed oil in capsules. Read the work of Johanna Budwig, PhD and/or join the flaxseedoil2 group.

Flaxseed oil is very fragile and easily gets rancid, that's one of the issues.

Fish oil is more stable and contains EPA and DHA omeg-3 fatty acids without the conversion necessary when using flaxseed oil. Fish oil is anti-inflammatory, too.

mjh

So I guess I've just taken the very long way around (again) to suggest that supplementing your dietwith flax seed oil capsules could be one way (of many) of reducing your inflammation after you comeoff the Prednisone - but you'll need to check in with your doctor on that due to your Crohn's.Regards,Cris

[Guest guest]

Thanks for the tip.

I'll go check that out.

Regards,

Cris

>

> Cris

>

> Be aware that there can be some not so good effects in taking

flaxseed oil

> in capsules. Read the work of Johanna Budwig, PhD and/or join the

> flaxseedoil2 group.

>

> Flaxseed oil is very fragile and easily gets rancid, that's one of

the

> issues.

>

> Fish oil is more stable and contains EPA and DHA omeg-3 fatty acids

without

> the conversion necessary when using flaxseed oil. Fish oil is

> anti-inflammatory, too.

>

> mjh

>

>

> So I guess I've just taken the very long way around (again) to

suggest that

> supplementing your diet

> with flax seed oil capsules could be one way (of many) of reducing

your

> inflammation after you come

> off the Prednisone - but you'll need to check in with your doctor

on that

> due to your Crohn's.

>

> Regards,

> Cris

>