3 month update (RRMS)

[Guest guest]

Hi all -

With the understanding that 90 days is not that long to determine

the effectiveness of a treatment for MS - I am still very excited -

the reason? Because prior to starting LDN, my exacerbations were

coming every 40 - 45 days. Since I have now gone twice that period

of time exacerbation free - I think that LDN is doing what I want it

to do - what it is " meant " to do, and that is slow down, or possibly

even stop my disease progression! Yippee!!!

Details - for anyone interested.

I started using LDN from Skip's pharmacy, 3.0. After about 30 days

(and a conservation on this board about Dr. B thinking 4.5 was

better dose) I decided I wanted to try 4.5, so began splitting my

capsules in half, and taking 1 and 1/2 each night. Of course this

meant I would run out of my script meds early, so I supplemented my

supply with Mexican Revia (using the pony bead scoop method for

measuring). I can report that I see no difference between the two

types of medicine, and will continue to use both as needed. (The

Revia does taste terrible - yuck!)

I have yet to decide if I am better off at 3.0 or 4.5, but it is not

a huge issue as there is not that much difference between the two

doses (for me). I think I feel slightly better on 4.5, but I sleep

less soundly and I seem to need to get up and " go " more frequently

during the night than I do on the 3.0.

My only noticeable on-going side effects (which I get on both doses)

is that I often wake up in the morning feeling dehydrated -

something I never did pre-LDN, and my dreams are very vivid. Neither

is bothersome to me. I will note that at first I did experience some

of the same things others have talked about, a few sleepless nights,

mild daytime nausea and headaches which tapered off after a few

weeks and are no longer an issue.

I do not have any spasticity, stiffness, dizziness, loss of balance,

bladder or bowl control, or weakness issues. My MS symptoms have

been extreme fatigue; brain fog; facial, mouth and throat numbness

and tingling; hand and feet tingling; total loss of sight due to ON;

lower back and upper neck pain; and frequent (but controllable)

urination mostly during night hours.

Since being on LDN some of my symptoms (brain fog, extreme fatigue

and most, but not all of the tingling) have completely disappeared,

what is on-going is my sight problems, and the need to urinate

during the night. My eyesight has improved greatly which I

understand is the nature of ON and probably not due to the LDN. My

need to get up during the night has improved, too - where I used to

get up 5-7 times nightly, I now average 2 per night, with a good 6

hours sleep in between. This probably is the LDN working. When I

take the 3.0 dosage, I usually only get up once.

I believe that the LDN is helping me slowly build some heat

resistance. In the beginning 80 degrees was my cut off when I would

start to get heat related symptoms. That has now climbed up to about

85 degrees. In addition, at first those symptoms would appear after

just two or three minutes where now, I can go about 10 to 15 before

I am in trouble. At least I can make it between work and home (7

minute drive) without going blind! A very good thing!!! (No air co.

and it's 102 degrees here.)

I feel like my MS has stabilized. There are even times when I almost

can " forget " I have MS. In general, I have felt better the past 3

months than I have in years. My mood is great, emotions are solid. I

look forward to getting up in the morning where before, it was a

chore to be endured. I am no longer afraid to face the day.

In addition - I have gotten a few completely unexpected benefits

from the LDN.

I continue to loose weight - I am down a total of 76 pounds. I

attribute this to the significant increase in my energy and

activity, because I am not eating any different.

I have always suffered from extreme seasonal allergies. I am 47,

have lived here in Southern California my entire life, and have

never, ever gone through a spring without months of the worst

allergy symptoms you can imagine. This spring I have had zero

seasonal allergy symptoms. It's been nothing short of amazing. The

LDN does not help my food allergies, but my reactions to air borne

stuff - completely gone!

Another unexpected benefit for me has been that due to my on-going

seasonal allergies, I have over the years developed many scars. My

allergies have resulted in hives and horrible skin itching, which I

would scratch while I slept - awful. Since being on LDN, I have had

no hives or itching, and almost all of the scars are healing. Many

are completely unnoticeable and a few of the worst ones - the ones

that I have had for 10+ years have been reduced by about 65 - 70%,

and are continuing to fade. Nothing in my life has changed, except

for the addition of LDN to my routine. I can attribute this

improvement to nothing except for the LDN.

I apologize for the length of this - but am hoping that someone out

there can benefit - if nothing else, maybe I can encourage someone

else to try LDN first, like I did.

Best of luck to you all, and Thanks! You are a wonderful group of

people who face things every day that most can not even imagine. I

get strength, courage and sometimes some real good laughs from you

all! You are GREAT!!!

Cinders - RRMS in Southern California.

Note for the ladies: Pre LDN, I had zero libido. Since taking LDN, I

now have what I would consider a more normal libido. Don't plan to

do anything about it, but just having the thought is fun!