Guest guest Posted May 3, 2010 Report Share Posted May 3, 2010 Based on your multiple diagnoses of ME (?) and Fibromyalgia PLUS the pain, diarrhea, shivering, and weight loss (my symptoms also), I would consider investigating the possibility of Lyme disease. My sickness " voyage " started out with optic neuritis, then multiple sclerosis (MS). The only constant in life was a loss of physical and mental strength. My time on LDN, and especially with this LDN support group, I was able to move away from the traditional MS treatments and even able to consider Lyme disease. Eventually, I figured out that my sickness might be Lyme disease and hired a Lyme Literate Medical Doctor (LLMD) to determine f my sickness was Lyme disease. I was diagnosed with Lyme and started treatment in March 2008. I'm still quite puny, but, I am more confident with my new diagnosis and treatment. I am now taking MANY antibiotics and MANY supplements. NONE of the Lyme tests are accurate, especially the standard test most physicians use. Lyme is a CLINICAL diagnosis of an extensive history, physical exam, and maybe a test prescription of an antibiotic like doxycycline looking for a Herxheimer, aka " herx " reaction. These herx reactions are like being run over with a Mack truck and left on the road dead. There is no " I THINK I had a herx " . I know a fellow " Lymie " that is using LDN, along with her antibiotics, for her Lyme, and is reporting some positive results. I am currently investigating a new source for LDN for me. Here are a few Lyme internet links. There are MANY Lyme videos on Youtube also. Symptoms: www.CanLyme.com Internet link with a story of on patient going from MS to Lyme, PLUS a second video on LDN http://vimeo.com/2354218 Trailer for the Lyme disease documentary " Under Our Skin " http://www.youtube.com/watch?v=uSsnMQHIJZk ...... > I've been on LDN for over 2 months now, for ME and FM. I had huge problems at the start (see my first message below), which are sadly continuing. > > I managed to increase the dose to 1 mg and then 1.5 mg after having a couple of breaks of a few days, but now after a continuous spell of 10 days on 1.5 mg I feel so ill I can hardly eat or walk. The pain is like nothing I've ever experienced before - a severe cramp-like pain all over my body and I'm so dizzy I stagger even with just a few steps. I'm losing weight fast, have intermittent diarrhea, am shivering and sweating and have been almost completely bed-bound for 4 weeks. ..... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2010 Report Share Posted May 3, 2010 - Are you on any other medications/supplements? Dietary restrictions? Jaxi On Mon, May 3, 2010 at 4:49 AM, jnnfr_kdd <j.kidd@...> wrote: > I posted this message nearly 2 days ago as a follow up to a previous one but it hasn't appeared yet - perhaps it got lost somehow. > > Here it is again: > > I've been on LDN for over 2 months now, for ME and FM. I had huge problems at the start (see my first message below), which are sadly continuing. > > I managed to increase the dose to 1 mg and then 1.5 mg after having a couple of breaks of a few days, but now after a continuous spell of 10 days on 1.5 mg I feel so ill I can hardly eat or walk. The pain is like nothing I've ever experienced before - a severe cramp-like pain all over my body and I'm so dizzy I stagger even with just a few steps. I'm losing weight fast, have intermittent diarrhea, am shivering and sweating and have been almost completely bed-bound for 4 weeks. > > I still have the questions about TH1 and TH2 immunity - Art suggested I email Dr McCandless with these, but I got no reply. > > Has anyone any suggestions? Should I reduce the dose again, stop completely for a while, or try to carry on. Has anyone else had these problems? > > > > >> >> Hi all >> >> Could anyone help me understand the theory behind how LDN works please? I've read quite a lot of material, but am puzzled by something in a paper by Brown and Pankkrepp - LDN for disease prevention and quality of life, published in Medical Hypotheses, 2009. >> >> They cite research that suggests that beta-endorphins suppress TH1 and augment TH2 cells. But other work suggests the opposite, and surely most conditions that people take LDN for involve a damaging shift to TH2 immunity. >> >> I started LDN two and a half weeks ago for ME and Fibromyalgia (which I've had for 28 years), taking 1.1 mg at first, then 1.5 mg for a few days. After one week my pain and flu-like symptoms had got so much worse I decreased to 0.5 mg. After 10 days on this dose I'm still in extreme pain, feeling very ill, sweating and shivering, and haven't been able to eat anything much for all this time. So I'm stopping today for a few days at least. >> >> Are these extreme reactions common at such a low dose? >> >> Many thanks for your help. >> >> >> > > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
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