Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Karin, First of all know I am praying for the best for you. I too have MS and I just found LDN this year and started it 6/06. I have extreme leg contracture's. My walking is the pits but I am not in a chair. I can't cook, do dishes or clean my house. I do work part-time for a doctor that knows and sees my condition but when I am home I do nothing but sit. My husband and 9 & 10 yr old do any shopping-grocery or any other that my family needs. No muscle relaxer in the world that I have tried helps in any way. I am sure that you can have problems like you are having with any of the MS drugs you mentioned. It's easier for the neuro to say what he did. I naturally think you are feeling 100% like anyone would in your position. Is he the one that prescribed the LDN to you? Maybe you are having an exacerbation that's just going on and on. You'll have to make a decision indecently if you think LDN is the right drug or not, I imagine you do, find another doctor to give you the script-they are out there. Good luck with the MRI-they make me nervous too-not that it changes anything -it's like why bother with them? We know how we feel. I wish you the best of luck making this call. -- [low dose naltrexone] Need some words of wisdom from everyone Hi gang- I'm Very upset right now so forgive any unkind words thatmay slip...... My husband whom I love dearly was supportive of me giving LDNa try back in 04 after a severe exacerbation in 02. Well,as Iwas very happy going off all the CRABS and not having anymore ofthe horrible side effects I thought LDN WAS THE GREATEST!Here we are in late 06 and I'm starting to have terrible legcontractions and I couldn't even get more than 4-5 hrs of sleep.I chalked it up to sitting in this Damn wheelchair all day,laying in one position all night, and 100% lack of any physicaltherapy/movement. In the last many weeks I noticed my strengthand rom really declining. My husband also kept commenting onhow loaded I was sounding (never mind the fact I was reallytaking more Baclofen/Zanaflex in recent weeks to stop the legcontractions which effects my speech) Anyway, I finally cavedin and made an appt. w/my neuro. What do you think he said? Ihad gotten worse since my last visit and the LND or whateverdrug I was taking wasn't holding the MS at bay (The A-holedidn't even know how to say LDN!! He immediately asked me tostop taking it and said get back on the CRABS, any one I wantedbut do it!! He ordered a new MRI and blood work. I crieduncontrollably for hours. Now I don't know what to do,Avonex,Beta Seron, Copaxone, Rebif, Tysabri? Help me out hereplease. Please pray that the MRI doesn't show a worsening in thedisease.Thanks,Karin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Hello , I am a returnee to the LDN sight. I have been using LDN for 3 1/2 yrs. My advice to you is to drop to 3mgs and see if you still have the stiffness. To make 3mgs from your 4.5mgs Take 2 of your 4,5mgs , cut the top or open into 9 oz of water, Now you have 9mgs of LDN or 3 nights worth.Take 3mgs with a syringe dropper.(you get get at pharmacy in baby dept, or ask pharmacist) Also, are you taking Calcium/magnesium in the evening? This may help with leg cramps, just drink a whole glass of water with it to flush through. Only Copaxone can be taken with LDN. Kiki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 You have my prayers. This reminds me, though, of a question I've not yet asked here, because I haven't checked the archives first as I know I should do--is it true that you can take copaxone and LDN at the same time, without them cancelling each other out? I'm on copaxone now (and doing well on it, though I was only diagnosed this May) but if possible, I'd like to add LDN without dropping the copaxone. If it's true that you can take both without any loss in efficacy, that might be a solution for both of us! -E House Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 > > Hi gang- > I'm Very upset right now so forgive any unkind words that > may slip...... > > My husband whom I love dearly was supportive of me giving LDN > a try back in 04 after a severe exacerbation in 02. Well,as I > was very happy going off all the CRABS and not having anymore of > the horrible side effects I thought LDN WAS THE GREATEST! > Here we are in late 06 and I'm starting to have terrible leg > contractions and I couldn't even get more than 4-5 hrs of sleep. > I chalked it up to sitting in this Damn wheelchair all day, > laying in one position all night, and 100% lack of any physical > therapy/movement. In the last many weeks I noticed my strength > and rom really declining. My husband also kept commenting on > how loaded I was sounding (never mind the fact I was really > taking more Baclofen/Zanaflex in recent weeks to stop the leg > contractions which effects my speech) Anyway, I finally caved > in and made an appt. w/my neuro. What do you think he said? I > had gotten worse since my last visit and the LND or whatever > drug I was taking wasn't holding the MS at bay (The A-hole > didn't even know how to say LDN!! He immediately asked me to > stop taking it and said get back on the CRABS, any one I wanted > but do it!! He ordered a new MRI and blood work. I cried > uncontrollably for hours. Now I don't know what to do, > Avonex,Beta Seron, Copaxone, Rebif, Tysabri? Help me out here > please. > > Please pray that the MRI doesn't show a worsening in the > disease. > > Thanks, > Karin > =========== If you choose a CRAB drug, choose Copaxone, you can still take LDN. I'm going to make some suggestions. Get Dr. Atkins low carb diet book, Atkins Diet Revoution and eliminate from that diet all dairy, gluten, any wheat that might be allowed, no soy, no sugar(use Stevia sweetener). Get all organic meats and eggs, no steroid or antibiotic tainted meats/eggs. No meats that have been sugar cured. The lower you go in carbs the better off you'll be. Expect a detox of possible hives, fever, headache, nausea, extra fatgue, etc. Welcome these symptoms as healing. Supplements you want to add to the diet. A good quality probiotic (acidophius)-take 4 per day. Lauricidin(do google search) Oil of Oregano Olive Leaf Extract Garlinase(do google search)--take 2 in AM, 2 at noon and 2 at supper. L-Lysine 500mg-take as directed For spastic muscles...this is very expensive but it works for me when I get dosage as high as 12,000mg a day. Check into Bill Rich's MSM, I feel his is the best quality MSM available. Do a google search. I used the torpedo tablets, you may want the powder. I started for 3 days with 1000mg of Rich's MSM and for better absorption take with the MSM 1000mg of Ester C, make sure the Vitamin C is buffered, then after 3 days I upped to 2000mg of MSM and 1000mg Ester C for 4 days, then upped to 3000mg of MSM and 2000mg of Ester C for 4 to 5, then up to 4000mg MSM and 2000mg of Ester C, 5000mg of MSM and 3000mg Ester C, on up and up. In the higher ranges like 10,000mg of MSM I took 5000mg MSM and 3000mg Ester C in AM and the same in PM. You do not want to increase MSM dose too fast, it will cause a severe detox. If your urine starts smelling bad/strong that's a good sign, you are flushing out bad toxins. I don't know where you get your LDN prescribed but make positively sure it is made by a reputable compounding pharmacy and that absolutely NO calcium carbonate is being used as a filler, make sure your pharmacy uses Pure Naltrexone Powder and that they are not crushing the 50mg Naltreone tablets. You may want to be on 3.0mg for awhile to see if your spasticity dies down. 4.5mg may be contributing to the spasticity. Make a deal with your doctor and husband that you will go on Copaxone as long as you get to continue with LDN, no LDN, no CRAB's. And if the neuro won't write the LDN script refuse his CRAB's. Where do you live and where do yo get your LDN? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 , I'm curious if you have taken any type of poll or if you are keeping some type of database showing the efficacy of these suggestions with a group of people. Your suggestions are interesting, but I wonder if they take into consideration the history or any current diets/supplements/medical history of the folks that you are making these suggestions to. I would love to see posts from those who follow these protocols and benefit from them. > >> > Hi gang-> > I'm Very upset right > now so forgive any unkind > words that> > may slip......> > > > My husband whom I love > dearly was supportive of > me giving LDN> > a try back in 04 after a > severe exacerbation in > 02. Well,as I> > was very happy going off > all the CRABS and not > having anymore of> > the horrible side > effects I thought LDN WAS > THE GREATEST!> > Here we are in late 06 > and I'm starting to have > terrible leg> > contractions and I > couldn't even get more > than 4-5 hrs of sleep.> > I chalked it up to > sitting in this Damn > wheelchair all day,> > laying in one position > all night, and 100% lack > of any physical> > therapy/movement. In > the last many weeks I > noticed my strength> > and rom really > declining. My husband > also kept commenting on> > how loaded I was > sounding (never mind the Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Karin, My neuro said it is okay to take LDN with Copaxone, and that it has fewer side effects than the others. So maybe you could start Copaxone and still stay on the LDN? Hope you are feeling better. Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 > > > > , I'm curious if you have taken any type of poll or if you are > keeping some type of database showing the efficacy of these suggestions > with a group of people. Your suggestions are interesting, but I wonder > if they take into consideration the history or any current > diets/supplements/medical history of the folks that you are making these > suggestions to. I would love to see posts from those who follow these > protocols and benefit from them. > ========= Dave, The only ones I've seen benefit from the sugar free, soy free, gluten free, dairy free, the very low carb diet and supplements combined are the adult parents of Dr. McCandless' autistic kids....these parents and or grandparents have MS, Crohn's, IBS, Fibro, CFS, etc and are very willing to drastically change their diet because of the positive outcome of most of their autistic child or grandchild on this diet. Like McCandless has said to me many times, it's hard to get an adult with MS, Crohn's, IBS, etc to change their diet to such drastic measures. But it has done much good for those adult parents/grandparents with autoimmune system diseases when they changed to this type diet. There's an entire family on McCandless' forum who do not take LDN but they do the GF/SF/CF/SF diet and all have improved. So far, I don't think anyone from this group has given forth too much of an effort on this diet protocol except for me and possibly one or two others. It can take 6 months or more for gluten to start getting out of one's system. I'm one who really stuck to the strict diet and supplements for more than a year and then I changed to a more raw veggie, raw nuts, steamed veggie, fruits, limited fish and turkey weekly, no red meat for a year type diet and combining my foods correctly for easier digestion and not drinking with my meals and continuing with the supplements. If I see that I'm back- tacking in any way I will return to the strict low carb diet. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 > > Hello , I am a returnee to the LDN sight. I have been using LDN for 3 > 1/2 yrs. My advice to you is to drop to 3mgs and see if you still have the > stiffness. To make 3mgs from your 4.5mgs Take 2 of your 4,5mgs , cut the top or > open into 9 oz of water, Now you have 9mgs of LDN or 3 nights worth.Take 3mgs > with a syringe dropper. (you get get at pharmacy in baby dept, or ask > pharmacist) > > Also, are you taking Calcium/magnesium in the evening? This may help with > leg cramps, just drink a whole glass of water with it to flush through. > > > > Only Copaxone can be taken with LDN. Kiki > ========== Kiki, Welcome back. Folks, Kiki is a patient of Dr. B's and has been on LDN a good while. Nice to see some oldies return. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 > ========= > > Dave, > > The only ones I've seen > benefit from the sugar > free, soy free, gluten > free, dairy free, the very > low carb diet and > supplements combined are > the adult parents of Dr. > McCandless' autistic > kids....these parents and > or grandparents have MS, > Crohn's, IBS, Fibro, CFS, > etc and are very willing > to drastically change > their diet because of the > positive outcome of most > of their autistic child or > grandchild on this diet. > Like McCandless has said > to me many times, it's > hard to get an adult with > MS, Crohn's, IBS, etc to > change their diet to such > drastic measures. But it > has done much good for > those adult > parents/grandparents with > autoimmune system diseases > when they changed to this > type diet. There's an > entire family on > McCandless' forum who do > not take LDN but they do > the GF/SF/CF/SF diet and > all have improved. So > far, I don't think anyone > from this group has given > forth too much of an > effort on this diet > protocol except for me and > possibly one or two > others. It can take 6 > months or more for gluten > to start getting out of > one's system. I'm one who > really stuck to the strict > diet and supplements for > more than a year and then > I changed to a more raw > veggie, raw nuts, steamed > veggie, fruits, limited > fish and turkey weekly, no > red meat for a year type > diet and combining my > foods correctly for easier > digestion and not drinking > with my meals and > continuing with the > supplements. > > If I see that I'm back- > tacking in any way I will > return to the strict low > carb diet. > > > It's taken me awhile but I'm pretty much on track with the GF/SF/CF/SF diet. Last week I eliminated the last diary food from my shopping list. I'm hoping my efforts will improve LDN's performance. One problem I'm finding is the speciality/organic foods are more expensive than what's found in a regular grocery store. May have to rob a bank or win the lottery in order to eat healthier. On another note, I plan on taking 4-AP just as soon as I get the prescription from my neurologist. Will use Skip's to fill it. Anyone have any feedback/experience with this? Heard it's supposed to help one walk better. Artie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 > One problem I'm finding is the speciality/organic foods are more > expensive than what's found in a regular grocery store. May have to > rob a bank or win the lottery in order to eat healthier. > Artie ======== Art, The most important foods to buy organic is meats and eggs and yes, quite expensive. It's the growth hormones and antibitics in the meats and eggs that fuel yeast and suppress and weaken the immune system. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2006 Report Share Posted October 21, 2006 Art, Here is a recipe for a food bath that rids 'grocery' foods of pesticides,parasites, bacteria, and other contaminants: 1 tsp Clorox bleach to 1 gallon of purified, ozonated or electrolte-enhanced water (must be Clorox brand) soak leafy vegetables 15 minutes other vegetables and fruits 30 minutes poultry, fish, meat (not ground meats) and eggs 20 minutes After soaking, remove from the bath and place in clear water for 10 minutes. Rinse, dry thoroughly and store. The oxygenating process is reported to freshen 'shriveled' fruits and tenderize meat, enhance natural flavors and make food last up to two weeks longer in the refrigerator. > > > > One problem I'm finding > is the speciality/organic > foods are more > > expensive than what's > found in a regular grocery > store. May have to > > rob a bank or win the > lottery in order to eat > healthier. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 So sorry about all this. I would do a phone consultation with Dr. Bihari immediately. His assistant's name is Bill and the number is 212- 929-4196. It will probably run $500, but he's a wonderful human being and the first to use LDN to treat MS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Karin, are you taking any supplements? I forgot to mention this before. Dr. Lawrence in the UK recommends very specific supplements for spasticity, including calcium, magnesium, MSM and GABA. Since taking GABA, my leg spasms have definitely decreased. I THINK cutting down on wheat has helped too. If you'd like the supplement amounts, please e-mail me directly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Drastic is the key word, it's a huge change. Personally, I could never do it, I guess I'm either too set in my ways, or else I'm not 'bad off' enough to resort to such drastic measures. Interesting you say that the parents of autistic kids have those issues, does Dr McCandless know the ratio of autistic kids with , for lack of a better word, diseased parents, and do you or her know exactly what benefits these parents are getting?> Dave,> > The only ones I've seen > benefit from the sugar > free, soy free, gluten > free, dairy free, the very > low carb diet and > supplements combined are > the adult parents of Dr. > McCandless' autistic > kids....these parents and > or grandparents have MS, > Crohn's, IBS, Fibro, CFS, > etc and are very willing > to drastically change > their diet because of the > positive outcome of most > of their autistic child or > grandchild on this diet. > Like McCandless has said > to me many times, it's > hard to get an adult with > MS, Crohn's, IBS, etc to > change their diet to such > drastic measures. But it > has done much good for > those adult > parents/grandparents with > autoimmune system diseases > when they changed to this > type diet. There's an > entire family on > McCandless' forum who do > not take LDN but they do > the GF/SF/CF/SF diet and > all have improved. So > far, I don't think anyone > from this group has given > forth too much of an > effort on this diet > protocol except for me and > possibly one or two > others. It can take 6 > months or more for gluten > to start getting out of > one's system. I'm one who > really stuck to the strict > diet and supplements for > more than a year and then > I changed to a more raw > veggie, raw nuts, steamed > veggie, fruits, limited > fish and turkey weekly, no > red meat for a year type > diet and combining my > foods correctly for easier > digestion and not drinking > with my meals and > continuing with the > supplements. > > If I see that I'm back-> tacking in any way I will > return to the strict low > carb diet.> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Hi Karin, sounds like the Baclofen is working against the LDN. One is trying to make your leg move, and the other is trying to make it stop!!! It seems to me that Millar knows quite a bit about Baclofen.>> Hi gang-> I'm Very upset right now so forgive any unkind words that> may slip......> > My husband whom I love dearly was supportive of me giving LDN> a try back in 04 after a severe exacerbation in 02. Well,as I> was very happy going off all the CRABS and not having anymore of> the horrible side effects I thought LDN WAS THE GREATEST!> Here we are in late 06 and I'm starting to have terrible leg> contractions and I couldn't even get more than 4-5 hrs of sleep.> I chalked it up to sitting in this Damn wheelchair all day,> laying in one position all night, and 100% lack of any physical> therapy/movement. In the last many weeks I noticed my strength> and rom really declining. My husband also kept commenting on> how loaded I was sounding (never mind the fact I was really> taking more Baclofen/Zanaflex in recent weeks to stop the leg> contractions which effects my speech) Anyway, I finally caved> in and made an appt. w/my neuro. What do you think he said? I> had gotten worse since my last visit and the LND or whatever> drug I was taking wasn't holding the MS at bay (The A-hole> didn't even know how to say LDN!! He immediately asked me to> stop taking it and said get back on the CRABS, any one I wanted> but do it!! He ordered a new MRI and blood work. I cried> uncontrollably for hours. Now I don't know what to do,> Avonex,Beta Seron, Copaxone, Rebif, Tysabri? Help me out here> please. > > Please pray that the MRI doesn't show a worsening in the> disease.> > Thanks,> Karin> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Howdy everyone! First post to this site. Been on Copaxone since May 1997 and LDN for just over two weeks. Are " leg contractions " the same as restless leg? I'm on Requip for the RLS and it works very well. I've seen vast improvements in overall energy and my hands are no longer numb as well. My advice? Hang in there, " play " with the different supplements/drugs until you find a balance, and keep laughing! Martha Skye Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 > > Drastic is the key word, it's a huge change. Personally, I could never > do it, I guess I'm either too set in my ways, or else I'm not 'bad off' > enough to resort to such drastic measures. Interesting you say that the > parents of autistic kids have those issues, does Dr McCandless know the > ratio of autistic kids with , for lack of a better word, diseased > parents, and do you or her know exactly what benefits these parents are > getting? > > Dave, > > ======= Yesterday Dr. McC sent me the results of her trial, not sure she's ready for that report to be released to the public just yet so I'll give you some general stuff from that report. She noted that parents with autistic children are under great stress and with that high stress it many times results in a breakdown of the immune system causing autoimmunity. Her results did show that the autistic children on both the LDN and very restricted diet had significantly more improvements than the adult group where only a few were on the restricted diet and there were many more adults with various autoimmune diseases in the study than there were autistic kids. The adults did well but she feels could do better if radical changes were made to diet. McCandless feels that for the adults that if diet were to be changed to the gluten/wheat free, soy free, dairy free, sugar free diet that there would be better results from LDN for the adults. The adults did well but she feels they could do better with diet change. Maybe she'll put out the results on her site soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 For spastic muscles...this is very expensive but it works for me when I get dosage as high as 12,000mg a day. Check into Bill Rich's MSM, I feel his is the best quality MSM available. Do a google search. I used the torpedo tablets, you may want the powder. I started for 3 days with 1000mg of Rich's MSM and for better absorption take with the MSM 1000mg of Ester C, make sure the Great advice , and I am also a big fan of MSM, but it should ALWAYS be taken with the trace mineral molybdenum to convert it to a beneficial sulfate form in the body. Otherwise it can be quite toxic. I get my MSM powder at the feed store locally for about 6.50 per lb container and it is as pure as any of the other brands. 99%. The molybdenum can be purchased in pill form from Solgar or I found a liquid form from Vitacost.com which I find more convenient. The ratio is 10mcg. molybdenum to 500mg MSM. Quote Link to comment Share on other sites More sharing options...
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