I Need Fibro LDN testimonials!

[Guest guest]

I'm getting a chance to convince Dr. RM Staud, fibro specialist at

Univ of FLorida (who's had arthritis found $ to study chronic pain),

that he should join with me in doing case studies on LDN for fibro,

around the end of Feb. My daughter has Ehlers-Danlos Syndrome,

Hypermobility Type, which is PROBABLY the developmental pathway for

10-30% of fibromyalgia cases (med research I have), and LDN has

boosted her blood beta-endorphin levels from 1/6 normal (like fibro)

to 1/2 normal in 5 weeks. THAT'S WHAT IT'S DOING FOR ALL OF YOU, but

right now Dr. Sacerdote's Univ. Milan test on my daughter is the ONLY

PROOF I have for that fact (since Dr. Bihari never published or even

duplicated and disseminated his reported evidence for the same thing

with AIDS patients in the 1980s & Sacerdote is the only lab that does

and publishes the results of the blood test.) I'm taking my daughter

to an apptmt with Staud in 3-4 weeks. I already have the sleep

disorders dept director R. Berry interested in solving the sleep

disturbance problem for EDS and fibro, and he referred us to Dr.

Staud (who wouldn't see my daughter 3 yrs ago because he was doing

pain studies only with adults).

I have a better chance of convincing Staud to pursue LDN ( & sleep)

for fibro ( & EDS) if I have, in addition to 20-30pages of research

abstracts & personal correspondence with naltrexone researchers, ALSO

A BIG HANDFULL OF " ANECDOTAL EVIDENCE " = EMAIL TESTIMONIALS FROM

FIBRO PEOPLE WHO'VE HAD SOME SUCCESS WITH LDN. You don't have to be

a miracle, since most drugs, incl today's rage Lyrica, and tomorrow's

rage Xyrem, and day-after-tomorrow's rage (Miridol or some wierd new

antidepressant name already pilot tested in Poland and now coming to

a testing site in my town) will only show very modest gains in pain

control.

The best testimonials would include 1. history paragraph 2. symptom

summary (I have a 2p symptom questionnaire & 3 p pain qnr you could

use by requesting them as a Word attachment--theyres for my case

study protocol, which no one has been willing to do for the 9 months

I've been advertising it, including here on this group site. But if

you're already taking LDN it's too late for BEFORE in a case study,

but you could still use it as a guide to guesstimate your pain &

symptom improvement. 3. Symptom & pain change since LDN(dose & side

effects). 4. Mention sleep issues & medications or other methods

(DELTA SLEEP CDs work for me, but no proof available that they'll

work for others with fibro, which I don't have, and my daughter is

inconsistent in using the $10 CDs she has on her IPOD.)

PLEASE CONTACT ME DIRECTLY AT nphbrown@... (nobody did the last

time I appealed for help on case studies), because I can't find

responses on this list quickly enough. I'm a full time psychology

professor, and I have to take care of my daughter AND my wife who is

in radiation now for advanced stage cancer (and trying to get off

percacet for Ankylosing Spondylitis or Psiatica to start LDN).

If it will help you to understand and trust me, call me on my cell

phone at 386-316-5259 Tues/Thurs/Sat/Sun or 386-226-6631 univ office

MWF--Daytona Beach FL.

I can forward those detailed testimonials to Dr. Sacerdote in Milan

also, who's promised she can get a pilot clinical trial IF WE CAN

PROVE LDN WORKS FOR FIBRO. She'll need the case studies too, but

every bit that's scientifically organized helps, both for possible

Dr. Staud & Dr. Sacerdote.

Norman Brown, Ph.D., Ph.D.

Licensed Marriage & Family Therapist

Assoc. Prof. Psychology

Embry-Riddle Aeronautical Univ.

Daytona Beach FL 32114