Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Normal lyme tests are less than 50% accurate. Og to Igenex lab, in Palo Alto ,Ca. They are 90% ________________________________ From: low dose naltrexone on behalf of Miki Kalkus Sent: Thu 3/27/2008 12:39 PM low dose naltrexone Subject: Re: [low dose naltrexone] Re: Dose and effects Hi , I was tested twice for Lyme, once in the US and the second time here in Spain and both times they said it was negative. I don't know what test they used , this was in 1992. I'm really hoping that I am going thru the symptoms and it will pass soon! meanwhile I will try other ways of relief and see if something helps. thanks, Miki [low dose naltrexone] Re: Dose and effects I remember reading at one time that you had to go through all of your symptoms before getting well? I'm not sure how true that was? Miki have you been tested for Lyme? It concerns me that you are having depression while on LDN. Thats what led me to my dx off Lyme when earlier I was dxd with MS. Lyme can mimic MS down to the plaques on an mri. You need to be tested at a good lab such as Igenex. Hugs > > > > Hi Jan, > > I have the same issues as you, I still have problems with > stiffness, something I did not have a problem with before taking LDN. > I have tried to go up to 3.5 and 4.5 three times and was so stiff I > couldn't move. Now I'm back on 3.0 and am better but still having > problems with stiffness and therefore walking. I started on LDN on > Nov.2/2007 and am still waiting to feel better. I've also gotten > depressed but that's probably due to not being able to move as well > as before I started LDN. Everyday I wonder whether I should go back > on Betaferon which I had been taking for the last 9 years. I didn't > feel great on it but I did walk better and had less fatigue than now. > I'm holding out hoping that my body is still adjusting but how how > long will it take?! At this point I wonder if I'm one of the few for > whom LDN won't work? It's very frustrating and I would appreciate any > suggestions. My doctor doesn't know why I have such a problem with > stiffness and only suggests to wait some more. > > I appreciate the help that Aletha, Dudley, Larry and others have > already given me but I'm still not sure about whether LDN is helping > me... > > Miki -MS > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Hi Aletha, You are absolutely right that I need to RELAX, wait, and see! I have been so sick and lost so much of my life and now that I have the correct diagnosis of Lyme I want a quick fix. I didn't even realize this is what I was thinking (probably due to Lyme brain) until yesterday. I guess, because all along I thought once I was properly diagnosed I would get " cured " . I knew (know) that Lyme takes a long time to heal (and I won't be cured), but I didn't realize that I wasn't accepting that fact. So, when I started ldn I was reading all these wonderful reports and put it in my " quick fix box " . Well, it finally sunk in! Of course, with a Lyme brain, I can't promise it will stay there. I got my LLMD to prescribe Zoloft to deal with the depression and then I think I'll be able to accept the long rollercoaster ride and be patient about ldn and any other treatment I have to do. I appreciate everybody's response, thanks. jan > > Dear Jan, > > As I wrote in the welcome e-mail, everyone is different. I know you want to figure out how LDN works and exactly how and when you will see and get effects, but we just cannot say because everyone one is different and things vary so much for each person. The main thing is to relax (as best as possible) and wait and see. If you are doing fine with side effects on 3.0mg you might wish to up the dose to 4.5mg. In fact Dr. Bihari feels that starting and staying at 4.5 is the best thing, and only going down to 3.0 if the spasms or side effects are too difficult to work through. That is the way everyone had started in the past (at 4.5mg). Later someone started suggesting starting at lower amounts and increasing slowly in order to get your body used to it. I am not honestly sure if that is best or not. Perhaps we can take a poll and get a more definate idea of whether starting off on 4.5 or starting at 1.5 seems to be more sucessful. > > I will send you some saved posts from our chat site regarding pain. Hopefully they will help. > > Please keep us posted on how you are doing. > > Aletha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Hi Betty, That's cool that it helped your dry eyes, maybe it will help mine! Are you using anything else for your dry eyes? If so, how did you know the ldn was helping and did you then quit whatever drops (or whatever) you were using? I use Restasis twice a day and have for quite awhile now. My last eye exam the dr. said I wasn't making enough tears and recommended adding Systane 3x's a day. He did recommend increasing the EPA (fish oil), too (my LLMD wanted me to take more, too). My LLMD said to add beta carotene, also. So far, my eyes are feeling better with those supplements added and I stopped the Systane. It would be nice if the ldn helped me to cut out some prescriptions one day. I am reading a Lyme book and in it is an anti-inflammatory diet. Diet - what a dirty 4 letter word! ;o) My hubby came home with a piece of Easter candy, one of my favs, and I said no thanks. Wow! Go me! LOL Hi, my name is jan and I am a recovering sugar addict. jan > > Hi Jan, > > I'm on day 27 and haven't seen change in my MS. It has helped my > colitis and dry eye some but still a little problem with them. > > I think following the BBD (Best Bet Diet from Dr. Embury's website) > helps also. > > Betty > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Herring's Law of Cure, or something like that. Sometimes I wonder if that is what's going on with me. jan > > > I remember reading at one time that you had to go through all of your > symptoms before getting well? I'm not sure how true that was? > > Miki have you been tested for Lyme? It concerns me that you are having > depression while on LDN. Thats what led me to my dx off Lyme when > earlier I was dxd with MS. Lyme can mimic MS down to the plaques on an > mri. You need to be tested at a good lab such as Igenex. > > Hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Thats why I thought of it, because maybe thats what you are going through. Hugs Les> Herring's Law of Cure, or something like that. Sometimes I wonder if > that is what's going on with me.> > jan> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Hi Miki, Was the U.S test the standard one? I ask because they leave out crucial bands. Igenex is the best way to go, and even then it can be negative. Take Care > Hi , > I was tested twice for Lyme, once in the US and the second time here in Spain and both times they said it was negative. I don't know what test they used , this was in 1992. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Hi Jan, I also tale a few drops of Marshmallow Root once or twice / day for dry eye. I got it from an herbalist. It's supposed to help with dryness. Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 LDN has pretty much cured my dry eyes. I only need drops before bed now, as opposed to every hour. > > > > Hi Jan, > > > > I'm on day 27 and haven't seen change in my MS. It has helped my > > colitis and dry eye some but still a little problem with them. > > > > I think following the BBD (Best Bet Diet from Dr. Embury's website) > > helps also. > > > > Betty > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 > > Hi Miki, > > Was the U.S test the standard one? I ask because they leave out > crucial bands. Igenex is the best way to go, and even then it can be > negative. > > Take Care > > > Hi , > > I was tested twice for Lyme, once in the US and the second time here > in Spain and both times they said it was negative. I don't know what > test they used , this was in 1992. > > > Weird: what if a guy got lyme disease in central Africa or in Buthan?? Just die? Really worth to get to the 21st century Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Hi Judy and Everyone,, I was very interested in the "antihistamine" effect that LDN has had for you. I suffer from IBS and a somewhat rare bladder disease called Interstitial Cystitis. IC is exacerbated by allergies in many patients, and I fall into that category. Presently, I take 100 mg. at bedtime and sometimes an additional dose(s) of 25 mg. every 4 hrs. I am hoping I will have my allergies under control with the LDN. That is so great to hear about your success in that way. Both IBS and IC have nerve pain components in the sacral area, and I'm hopeful that LDN will be beneficial for that. Thanks, "I absolutely believe to my soul that this corporate greed andcorporate power has an ironclad hold on our democracy." -- Sen. , Iowa, 2008Janet s Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Good Evening, I tried to refill my prescription for LDN threw my neurologist and he hasn't refilled it. The only thing I can think of that might be the problem is that when I started last March, it was with the understanding that I would start one of the crab drugs also. He gave me the paperwork to fill out and send back to his office with the permission to start the crab drug along with the LDN he begrudgingly gave to me. Now a year later I never mailed back the permission papers that his office was waiting for. So I think now he isn't going to refill the LDN prescription. So guess I'll have to find another doctor who will. And I live in Bloomingdale, New Jersey and would appreciate if anyone knew of a physician that would prescribe LDN for me. Thank You Hope to hear from someone soon because I do not have any more left! AnnCreate a Home Theater Like the Pros. Watch the video on AOL Home. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 hi ann I am in ny and i do know a neurologist in clifton email me if you can Re: [low dose naltrexone] Re: Dose and effects Good Evening, I tried to refill my prescription for LDN threw my neurologist and he hasn't refilled it. The only thing I can think of that might be the problem is that when I started last March, it was with the understanding that I would start one of the crab drugs also. He gave me the paperwork to fill out and send back to his office with the permission to start the crab drug along with the LDN he begrudgingly gave to me. Now a year later I never mailed back the permission papers that his office was waiting for. So I think now he isn't going to refill the LDN prescription. So guess I'll have to find another doctor who will. And I live in Bloomingdale, New Jersey and would appreciate if anyone knew of a physician that would prescribe LDN for me. Thank You Hope to hear from someone soon because I do not have any more left! Ann Create a Home Theater Like the Pros. Watch the video on AOL Home. Quote Link to comment Share on other sites More sharing options...
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