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SammyJo’s MS-LDN Timeline
Flu
MRI MRI-MRIMRI MRI
No Change
SammyJo 2003 – back home to Texas
Feb ’04: 9 yrs of MS,
on allopathic drugs May ’04: 85 degrees
3 months on LDN
First
sweat in
9 yrs !
LDNers Survey 1 – General Findings
Survey 1 Population Survey Completed 2004
• 267 Subjects, avg. 10 yrs diagnosis, 65% female
• Avg. LDN treatment 8 months, 24% 2 years+ of LDN treatment
• 10%, 28 individuals out of 267, reported a total of 42 relapses, 0.2 /yr
• Self selected volunteers over the Internet, online entry form
Survey Results:
PPms PRms RRms SPms Total
Total in MS type 13% 4% 43% 39% 267
Avg Mo's LDN 10 mo 13 mo 7 mo 9 mo 8 mo
Relapse Rate 0.1 0.2 0.3 0.3 0.2
Subjective Assessments:
Symptoms Improved 53% 75% 82% 57% 70%
Progression Halt 50% 58% 34% 43% 45%
LDN Helps, Will Continue 76% 83% 75% 70% 76%
LDNers Survey 1 – Relapse Rate
• Survey 1 Relapse Rate: 0.2 relapses per year, or 1
relapse in 5 years
• Better than the ABC drugs for MS
0
0.2
0.4
0.6
0.8
1
1.2
Untreated Avonex Betaseron Copanone LDN
Relapsesin1Year
ABC Source: A prospective, open-label treatment trial to compare the effect of IFNbeta-1a (Avonex), IFNbeta-1b (Betaseron), and
glatiramer acetate (Copaxone) on the relapse rate in relapsing--remitting multiple sclerosis: results after 18 months of therapy.
PMID: 11795454 LDN Source – LDNers.org Survey 1, July 2004
Leave Tx September 2004
Back to Seattle
2005 Walking
Edmonds pier
about 1000 yards >
LDNers Survey 2 – Disability
Survey 2 Population:
• 138 subjects
• 4.27 Avg. EDSS when they began LDN
• 3.66 Avg. EDSS when they took the survey 2nd
half of 2004
• Avg. length of LDN treatment – 8 months
Survey Results:
0
5
10
15
20
25
30
0
1.5
2.5
3.5
4.5
5.5
6.5
7.5
8.5
EDSS
n=138
Start LDN
Survey Date
2006 LDN Research Fundraiser, CA
Organizer: Vicky Finlayson, MS recovery from LDN
2006 LDN Research Fundraiser
SammyJo, Vicky & Mary Bradley
May 2008 Vicky Walks 52
Miles for LDN Awareness
Oct 2008 Vicky at the 5th
LDN Conference
– in high heals 
After LDN: MS Recovery 2009
LDN slowed my disease activity, so recovery/repair could begin.
Additional therapies for recovery
1. Physical Therapy, Massage, Chiropractic
2. Feldenkrais, Yoga, Craniosacral
3. Supplements - Omega 3-Fish Oils, Vitamin D3, Co Q10
4. Nanosecond PEMF - Pulsed Electromagnetic Energy
LDN Research Status 2009
• April 2009: Positive results on pain from Stanford fibromyalgia pilot.
Enrolling 2009: LDN in the treatment of Gulf War Syndrome at Stanford
Medical Center.
• 2008: Animal study at Penn State of naltrexone in a model of a disease that
mimics MS, funded by small grant from the National MS Society.
• Italian multi-institutional clinical trial of LDN for Primary Progressive
MS,
completed in fall 2007. Journal of Multiple Sclerosis. 2008 Sept.
• Phase II placebo-controlled clinical trial of LDN for Crohn’s disease at
Penn State. Journal of Gastroenterology, 2007.
• Enrolling 2009: Phase II placebo-controlled clinical trial on the efficacy of
LDN for children and adolescents with Crohn’s disease at Penn State,
enrolling.
• Clinical trial of LDN in HIV-infected citizens of Mali, implemented in
October 2007.
• Study of LDN in the treatment of MS at the University of California, San
Francisco, started early 2007, significant impact on pain & fatique.
LDN Book Dec 2008
Chapters
The War on Drugs, A History of Naltrexone
LDN in Autoimmune Diseases
LDN in Multiple Sclerosis
LDN in Neurodegenerative Disorders
LDN in Cancer
LDN in Autism Spectrum Disorders
LDN in Wound Healing and Infections
The Immune System and LDN in HIV/AIDS
The LDN Experience: A Patient’s Guide to LDN
The Potential Benefits and Future of LDN
How LDN Works - Theories
• Naltrexone prevents glutamate toxicity in
neurodegenerative disorders by inhibiting the NDMA receptors on
neurons – shown by NIH.
• Animal model of Parkinson’s disease, naloxone reduced
lipopolysaccharide-induced microglial activation – shown by NIH.
• Dr. Agrawal: reduces the production of iNOS, thus prevents
excitatory neurotoxicity caused by excess glutamate.
• Dr. Younger: glial cells=link between the neuronal and
inflammatory systems. LDN blocks opioid receptors on microglia,
reduces the high levels of cytokines seen in fibromyalgia, and impacts
the abnormal processing of pain in fibro.
How LDN Works - Summary
LDN fosters immune homeostasis via:
1. Reduced oligodendrocyte destruction by apoptosis
(demylenation).
2. Anti-inflammatory and antioxidant effects.
3. Reduced microglial activation.
Contraindication - Very Important! Do Not Mix
with Narcotics/Opiate Drugs

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SammyJo Wilkinson - Low Dose Naltrexone

  • 1. SammyJo’s MS-LDN Timeline Flu MRI MRI-MRIMRI MRI No Change
  • 2. SammyJo 2003 – back home to Texas
  • 3. Feb ’04: 9 yrs of MS, on allopathic drugs May ’04: 85 degrees 3 months on LDN First sweat in 9 yrs !
  • 4. LDNers Survey 1 – General Findings Survey 1 Population Survey Completed 2004 • 267 Subjects, avg. 10 yrs diagnosis, 65% female • Avg. LDN treatment 8 months, 24% 2 years+ of LDN treatment • 10%, 28 individuals out of 267, reported a total of 42 relapses, 0.2 /yr • Self selected volunteers over the Internet, online entry form Survey Results: PPms PRms RRms SPms Total Total in MS type 13% 4% 43% 39% 267 Avg Mo's LDN 10 mo 13 mo 7 mo 9 mo 8 mo Relapse Rate 0.1 0.2 0.3 0.3 0.2 Subjective Assessments: Symptoms Improved 53% 75% 82% 57% 70% Progression Halt 50% 58% 34% 43% 45% LDN Helps, Will Continue 76% 83% 75% 70% 76%
  • 5. LDNers Survey 1 – Relapse Rate • Survey 1 Relapse Rate: 0.2 relapses per year, or 1 relapse in 5 years • Better than the ABC drugs for MS 0 0.2 0.4 0.6 0.8 1 1.2 Untreated Avonex Betaseron Copanone LDN Relapsesin1Year ABC Source: A prospective, open-label treatment trial to compare the effect of IFNbeta-1a (Avonex), IFNbeta-1b (Betaseron), and glatiramer acetate (Copaxone) on the relapse rate in relapsing--remitting multiple sclerosis: results after 18 months of therapy. PMID: 11795454 LDN Source – LDNers.org Survey 1, July 2004
  • 6. Leave Tx September 2004 Back to Seattle 2005 Walking Edmonds pier about 1000 yards >
  • 7. LDNers Survey 2 – Disability Survey 2 Population: • 138 subjects • 4.27 Avg. EDSS when they began LDN • 3.66 Avg. EDSS when they took the survey 2nd half of 2004 • Avg. length of LDN treatment – 8 months Survey Results: 0 5 10 15 20 25 30 0 1.5 2.5 3.5 4.5 5.5 6.5 7.5 8.5 EDSS n=138 Start LDN Survey Date
  • 8. 2006 LDN Research Fundraiser, CA Organizer: Vicky Finlayson, MS recovery from LDN
  • 9. 2006 LDN Research Fundraiser SammyJo, Vicky & Mary Bradley
  • 10. May 2008 Vicky Walks 52 Miles for LDN Awareness Oct 2008 Vicky at the 5th LDN Conference – in high heals 
  • 11. After LDN: MS Recovery 2009 LDN slowed my disease activity, so recovery/repair could begin. Additional therapies for recovery 1. Physical Therapy, Massage, Chiropractic 2. Feldenkrais, Yoga, Craniosacral 3. Supplements - Omega 3-Fish Oils, Vitamin D3, Co Q10 4. Nanosecond PEMF - Pulsed Electromagnetic Energy
  • 12. LDN Research Status 2009 • April 2009: Positive results on pain from Stanford fibromyalgia pilot. Enrolling 2009: LDN in the treatment of Gulf War Syndrome at Stanford Medical Center. • 2008: Animal study at Penn State of naltrexone in a model of a disease that mimics MS, funded by small grant from the National MS Society. • Italian multi-institutional clinical trial of LDN for Primary Progressive MS, completed in fall 2007. Journal of Multiple Sclerosis. 2008 Sept. • Phase II placebo-controlled clinical trial of LDN for Crohn’s disease at Penn State. Journal of Gastroenterology, 2007. • Enrolling 2009: Phase II placebo-controlled clinical trial on the efficacy of LDN for children and adolescents with Crohn’s disease at Penn State, enrolling. • Clinical trial of LDN in HIV-infected citizens of Mali, implemented in October 2007. • Study of LDN in the treatment of MS at the University of California, San Francisco, started early 2007, significant impact on pain & fatique.
  • 13. LDN Book Dec 2008 Chapters The War on Drugs, A History of Naltrexone LDN in Autoimmune Diseases LDN in Multiple Sclerosis LDN in Neurodegenerative Disorders LDN in Cancer LDN in Autism Spectrum Disorders LDN in Wound Healing and Infections The Immune System and LDN in HIV/AIDS The LDN Experience: A Patient’s Guide to LDN The Potential Benefits and Future of LDN
  • 14. How LDN Works - Theories • Naltrexone prevents glutamate toxicity in neurodegenerative disorders by inhibiting the NDMA receptors on neurons – shown by NIH. • Animal model of Parkinson’s disease, naloxone reduced lipopolysaccharide-induced microglial activation – shown by NIH. • Dr. Agrawal: reduces the production of iNOS, thus prevents excitatory neurotoxicity caused by excess glutamate. • Dr. Younger: glial cells=link between the neuronal and inflammatory systems. LDN blocks opioid receptors on microglia, reduces the high levels of cytokines seen in fibromyalgia, and impacts the abnormal processing of pain in fibro.
  • 15. How LDN Works - Summary LDN fosters immune homeostasis via: 1. Reduced oligodendrocyte destruction by apoptosis (demylenation). 2. Anti-inflammatory and antioxidant effects. 3. Reduced microglial activation. Contraindication - Very Important! Do Not Mix with Narcotics/Opiate Drugs

Editor's Notes

  1. Started RR ’95 with full set of symptoms, frequent relapses. Copaxone 98-02, only 1 relapse SP and Novantrone 2002, Got worse the whole time on N, cane by Feb 03. Please don’t let anyone you know try Novantrone chemo for MS until they’ve tried LDN. Only made it 1 yr, not 2. My LVEF heart function went down from 60 to 50. FDA just increased warnings. Heart & leukemia risk for the rest of my life. Continued to worsen for 10 months after N, until starting LDN Feb 2004. Immediate improvement 1st nite - slep for 8 hrs straight. Put down my cane of 1 yr after 4 weeks. Amazed my neuro. Continuous improvement ever since, can now walk 1 mile.
  2. Online surveys Aggregate anecdotal reports into statistical format #1 to help others make informed decision about LDN, since limited medical advice. #2 Serve as an alert for researchers that there is something positive happening with LDN users, and spur research.
  3. The low relapse rate reported in the first survey was the most significant finding.
  4. EDSSStart LDNSurvey Date 039 1920 1.51715 21111 2.597 3712 3.552 483 4.521 517 5.5108 6139 6.52721 745 7.583 822 8.501 911 Avg.4.273.66
  5. LDN quickly halted my MS disease progression. Then the hard work began on repair and recovery after years of damage, from MS and the MS drugs that only left me with more disability. Lucky for me my cousin Vicki is an RN rehabilitation specialist, so I've had great guidance on recovery therapies. In return I tipped her off on LDN for fibromyalgia, and now we're both here celebrating our recoveries at the LDN conference! I can now walk one mile, thanks to LDN, followed by: Physical Therapy, Massage, Chiropractic, Supplements and Pulsed Electromagnetic Energy. You've heard about or used the first 4, and your neurologist better be writing PT scripts for you. But PEMF is an important therapy for all LDN advocates to know about because I have helped several MS patients get off pain narcotics so they could start LDN by using PEMF pain management technology instead of drugs. For me, I didn't have severe pain, but PEMF restored my heart function after it was degraded by Novantrone.  After LDN I lost respect for standard medical protocols and started down the integrative medicine path, especially therapies tested by clinical research.  You can track me down after the conference for more details on any of these therapies that have helped me, or see LDNers.org