Guest guest Posted February 9, 2005 Report Share Posted February 9, 2005 As with ANY condition, we don't treat symptoms, we treat patients. The name of the disease is irrelevant. You start the process the same as ALL cases. There is no answer or formula. Just take the case, make your assessments, treat the appropriate system and over time, the case will unfold. I would not recommend you do the brain protocol for a LONG time. Dick Thom Beaverton, OR Has anyone treated PPS before (using UNDA's, etc.)? Any ideas would be greatly appreciated. I am thinking that drainage followed (once all emunctories are open) by the Brain Protocol might prove to be helpful. Any thoughts? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Greetings from a newbee. 'Been reading this for a couple weeks - you all and LDN are impressive. Very little comes up when I search for Post-Polio Syndrome: PPS. It has a lot in common with ALS, MS, Fibromyalgia, Transverse Myelitis, Myalgic Encephalitis, Chronic Demyelinating Polyneuropathy, Chronic Fatigue Syndrome, and late effects of Guillain Barre, West Nile Virus, Gulf War Syndrome, and Lyme Disease. PPS is rarely mentioned in medical school, yet hundreds of thousands of survivors exist in U.S., maybe even 1.8 million in N. America. Estimates range from 25-75% develop PPS many many years after the truly ghastly illness. (Reminds me of Shingles after Chicken Pox.) Survivors avoid doctors until PPS materializes, usually have to educate the ones who are receptive, otherwise they tend misdiagnose (see above conditions) and endanger us - if they believe us at all. In the U.S. treatment may get you NSAIDS or muscle relaxers; non-medical is PT, swimming and whirlpool (if available), behavior modification: 'if it hurts, don't do it' and 'conserve to preserve. " There's been nothing to halt the deterioration. Thanks to internet, I've learned that high levels of pro-inflammatory cytokines are found in PPS spinal fluid, along with evidence of live polio virus in many PPS'ers that has an RNA replication restriction of the infectious portion (we're not contagious). When I found that out & took printed materials to my Dr. he sat up straight & his jaw almost hit the floor. Looking for more info about those pro-inflammatory cytokines, this according to Wikipedia: " Chronic systemic inflammation is the result of the release of pro-inflammatory cytokines from immune-related cells and the chronic activation of the innate immune system. It can contribute to the development or progression of certain conditions, " & T-cell responses are inhibited. Immune system confusion, T-cell involvement... imagine my surprise. All PPS'ers reportedly have 'activated immune systems,' so it's curious that there's not more of a presence on the LDN scene. On 1/13/09 Dr. Mercola's Newsletter had an article about LDN and MS, RA and other auto-immune conditions & it's how I found you. Sorry this is a bit long... 'thought I should fill you in since most people don't know PPS. Also, the only other pro-active treatment I've found is IVIg - Human Immunoglobulin - which apparently costs about $10,000 a hit, is used in Sweden, but not here - only on the FDA's Orphan Drug list for PPS. LDN would be so much more affordable. Could there be a down side to trying it? Thanks in advance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Hi , I don't know much about Post-Polio Syndrome (PPS)...except that my friend's mother has it. Your post was also informative. I'm NOT a doctor but if it PPS does have similarities to MS, Guillian Barre Syndrome...then I would THINK that LDN therapy might help. Do you have PPS ? Jann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 I spoke to Dr. Bihari about LDN and Post Polio Syndrome. Bihari said no cases of the disease ever presented in his office but he feels LDN would benefit someone with PPS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Yes, Jann, I have PPS. Does your friend's mother do anything for her PPS? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Wow Bren - prompt! Thank you, & Dr. Bihari, for the feedback. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2009 Report Share Posted February 5, 2009 Thanks for talking to Dr. Bihari, Bren, and the feedback. Quote Link to comment Share on other sites More sharing options...
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