Guest guest Posted November 13, 2005 Report Share Posted November 13, 2005 Yep, the far-infra red sauna (that we talked about) has had good results for helping pull those toxins which cause it to flare so badly. Yours in Health, Kathy fibromyalgia > > So, are you also saying that the far-infra red sauna > > might be helpful for fibromyalgia? Any others have > > experience with QX/SCIO and sauna on other > > " imbalances " and found good results? > > > > Priscilla Simpson Fibromyalgia is in the group of " mitochondrial disorders " so several other things that increase energy production are an asset. About 1/3 of fibromyalgia patients have low growth hormone - HGH. This can be improved with amino acids that increase HGH secretion. The one I use is SomaLife gHP. As well as improving regneration, HGH is a metabolic increaser. The " fibro " cross-linking part of fibromyalgia can be at least partially dissolved with metabolic enzymes. In fact fibroids, endometriosis and adhesions can be reduced as well as plaque and clotting. Studies show that the fatigue part of the fibromyalgia may be due in part to depleted antioxidant pool, notably glutathione, the body's main detoxifier and antioxidant. Regardless of the rest of one's program, these should be addressed. Duncan Crow http://members.shaw.ca/duncancrow/ ............................................. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 I have consulted with many people and had good results. 1. change diet - follow O type 2. anti-candida supplement treatment to help digestive tract 3. magnesium - maybe lots of it 4. deal with emotional issues for many people This is a very basic outline of starting point to get well. You will get lots of good diet ideas from this group. Get started and adjust as you go. Be happy and healthy Kathy vatizit <vatizit@...> wrote: Hi I just found the group. I am O positive and really need all the help I can get as I have fibromyalgia. I want to improve my health in anyway I can. Is there anyone else out there who has fibromylagia and has improved: would you please share your story with me? Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2006 Report Share Posted August 6, 2006 Hi ! Fibromyalgia is a central nervous system disorder caused by an overall system imbalance. Those of us who suffer from FMS tend to process substance P (the pain factor) differently than other people. Thus the extremes of pain, fatigue, etc. I can tell you that after 5 months on Bee's program my pain levels have changed drastically. I still have (and react to) all 18 tender points when they are touched but I no longer have daily pain. I sleep better, function better during the day, etc. I've gone from being a couch potato to exercising a minimum of 1 hour daily with almost no adverse side effects. (Actually the only pain I feel after exercising is occasionally from my arthritic knees...if I overdo it...though the arthritis is improving as well.) I still get days where the fatigue is overwhelming and I need to take a nap. But instead of four or five hours my naps now run 30-45 minutes and I wake up totally refreshed. I tend to believe the fatigue I feel now is more from die-off and healing than the FMS. I encourage you to follow Bee's program as closely as possible. The closer you stick to it...especially fat-protein ratios, not exceeding carb ratio, and taking supplements...the better you will feel. Hope this helps. Good luck! Hugs, Ellen [ ] fibromyalgia >>> ...but wondering now if perhaps fibromyalgia is what I may be >>> experiencing. <<<<snip>>>> >>>> ...apparently fibromyalgia (after doing some reading tonight) is an >>>> endocrine problem. >>>>snip<<<< >>>>> Any how...any thoughts? <<<< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 wrote: > > I've written asking about lyme's disease and candida, but wondering now if perhaps fibromyalgia is what I may be experiencing. I have a follow-up with the neurologist tomorrow, after seeing a spine surgeon etc., regarding electric sensations in my feet. But today my hands are so stiff and feel swollen. I was tested for rheumetoid arthritis and that was negative (I do have athritis in my neck/lower spine, accoridng to MRI and Xrays). Any how, apparently fibromyalgia (after doing some reading tonight) is an endocrine problem. I started out with a carpal tunnel syndrome surgeon long ago and do have that mildly. Apparently > fibromyalgia changes for a woman if she's pregnant, and I know carpal > tunnel is similar. Any how...any thoughts? ==> " Algia " means pain. Therefore, " Cephalgia " is a headache. The oft- used diagnosis, " Fibromyalgia, " means muscle fiber pain. There's one very serious problem with diagnosing: People feel they have a " condition. " Everyone knows, once you have a " condition, " you always have a " condition. " It's like old phones or luggage that used to last forever. Well, the medical myth that " conditions " last forever has gone the way of the rotary phone too. Arthritis, tendonitis and fibromyalgia are not death sentences. They're merely Latin terms, combined with fancy medical English phraseologies, for pains doctors don't understand and conditions for which they have no effective treatment. The key problem for the conventional medicine when it comes to aches, pains and degenerative issues like " arthr- itis " : Most doctors are only diagnosing and treating side effects, not the true cause of the problem. " Fibromyalgia is a very common candida symptom because candida toxins cause a lot of pain and stiffness in the muscles, just like candida toxins make all of the body's cells go rigid. Arthritis, too, is candida related - see the article in our files " Arthritis and the Candida Connection " . This article will help you understand why you have swelling, joint pain, aching muscles, stiffness, etc. Carpel tunnel can be corrected by taking B complex, particularly B6. , this entire candida program is not just a cure for candida. It is much more than that. It is a healing program which gives your body the nutrients required to heal. ==>, you will find your muscle pain and other symptoms will be a lot less if you are very strict with the diet and take all of the supplements recommended. Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 Sandi i have not started LDN yet but my doctor did put me on Lyrica I am up to 75 mg 2 x a day and will cap off next week at 100mg 2 x a day on top of this i started paxil 12.5 mg aday .I have pls and perihal neuropathy which I suspect is the same chronic pain people with lymes experience ,so the experience has been good I am not pain free but I do have a reduced amount and increase in energy. However if i over do things i suffer from useing muscles that are weak to much.Hope this helps you in your quest for pain reduction. Jerry ps. I have been treated for possible lymes twice [low dose naltrexone] Fibromyalgia Hi everyone,I am new to this group and began taking LDN last night. I was just wondering if anyone on the list was taking it for fibromyalgia and/or chronic pain or Lyme disease? If so, I would love to hear any positive reports.Thanks,Sandi No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.407 / Virus Database: 268.12.9/458 - Release Date: 9/27/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 Hi Sandi Welcome to the group. My sister has been taking it for GAID (Generalized AutoImmune Disorder) for almost 4 months now. Her symptoms have included RA, CFIDS, fibromyalgia, weird cysts and tumors, generalized pain, exhaustion, repeated infections, interstitial cystitis, and so on. She so far has had amazingly good results. Her bladder problems are gone. Most of the overwhelming pain is gone. Her mental fogs and particularly medium term memory loss is gone. Her sleeping quality has improved immensely. If you wanted her e-mail to correspond, I'd have to ask her, but I expect she would be interested. Good luck with the LDN. Victor > > Hi everyone, > > I am new to this group and began taking LDN last night. I was just > wondering if anyone on the list was taking it for fibromyalgia and/or > chronic pain or Lyme disease? If so, I would love to hear any positive > reports. > > Thanks, > Sandi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 Victor your sisters results on ldn sound like a miricle to me.I have not started it yet but gave my doctor an info pack to research so next visit I will get a script .... Jerry [low dose naltrexone] Re: Fibromyalgia Hi SandiWelcome to the group.My sister has been taking it for GAID (Generalized AutoImmune Disorder) for almost 4 months now. Her symptoms have included RA, CFIDS, fibromyalgia, weird cysts and tumors, generalized pain, exhaustion, repeated infections, interstitial cystitis, and so on.She so far has had amazingly good results. Her bladder problems are gone. Most of the overwhelming pain is gone. Her mental fogs and particularly medium term memory loss is gone. Her sleeping quality has improved immensely.If you wanted her e-mail to correspond, I'd have to ask her, but I expect she would be interested.Good luck with the LDN.Victor>> Hi everyone,> > I am new to this group and began taking LDN last night. I was just > wondering if anyone on the list was taking it for fibromyalgia and/or > chronic pain or Lyme disease? If so, I would love to hear any positive > reports.> > Thanks,> Sandi> No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.407 / Virus Database: 268.12.9/458 - Release Date: 9/27/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 Yes, Sandi, I am on it for Fibromyalgia. It has decreased the symptoms of nystagmus (which most people with Fibromyalgia do not have -but those with MS do), and also the feelings of like bugs crawling on the skin (that aren't there). Other than that, I haven't noticed anything, but if this helps my over all immune system to regulate, then it's worth it. I was waking up during the night for awhile, but not so much anymore. I have no other side effects, and feel LDN is very worth taking! Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 Dr. Carol, How long have you been using it? Destiny --- " Dr. Carol " <bewell@...> wrote: > Yes, Sandi, I am on it for Fibromyalgia. It has > decreased the symptoms of > nystagmus (which most people with Fibromyalgia do > not have -but those with > MS do), and also the feelings of like bugs crawling > on the skin (that aren't > there). Other than that, I haven't noticed > anything, but if this helps my > over all immune system to regulate, then it's worth > it. > I was waking up during the night for awhile, but > not so much anymore. > I have no other side effects, and feel LDN is > very worth taking! > > Carol > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 i personally know a bunch of people that are taking it for fibro and getting good results cyndi On Sep 29, 2006, at 8:12 AM, sharpsandi wrote: > Hi everyone, > > I am new to this group and began taking LDN last night. I was just > wondering if anyone on the list was taking it for fibromyalgia and/or > chronic pain or Lyme disease? If so, I would love to hear any > positive > reports. > > Thanks, > Sandi > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 I think I wrote this before - about a month ago I was talking to someone who was on ldn for fibromyalgia and stopped--she was really miserable with symptoms and bug crawling thing (which is also something a lot of woman get during menopause) which made me think of demodectic mange which is purely a immune disorder in puppies where the normal little bugs that they have over power them and cause horrible itchyscrathces. and I wondered if this the same thing and as soon as the immune system was better this particular symptom would go away.cyndiOn Sep 29, 2006, at 2:22 PM, Dr. Carol wrote:  Yes, Sandi, I am on it for Fibromyalgia. It has decreased the symptoms of nystagmus (which most people with Fibromyalgia do not have -but those with MS do), and also the feelings of like bugs crawling on the skin (that aren't there). Other than that, I haven't noticed anything, but if this helps my over all immune system to regulate, then it's worth it.    I was waking up during the night for awhile, but not so much anymore.    I have no other side effects, and feel LDN is very worth taking!  Carol  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 I have fibromyalgia, crest syndrome, and sjrogren's sydrome. I have been on ldn for about 3 weeks, and have had unbelievable results in : Tons more energy and feeling of well being, Better balance, less mind fog, almost no mind fog, better digestion, able to eat and swollow better, not limping, less pain in legs and hips, itching skin has subsided, bumps in buttock muscles going down, swollen salivary gland, (almost 2 years) near ear is going down, able to lift legs to get pants on, sleeping like a baby, able to fall right asleep after waking up, less swelling in hands, able to walk longer distances and not dying by evening when I have to move around, much less pain getting up from sitting down. I am only on 1.5 mg. I love it!!!! I also feel my allergies are better. Yes, and dreaming. Which means I am sleeping, which is good. No sleeping pills. This feels like a sleeping pill to me because I am able to sleep through the night. I was getting up at 4 and 5 am before and staying up all day. My back pain is much much better. I don't feel 80 anymore. Re: [low dose naltrexone] Re: Fibromyalgia I think I wrote this before - about a month ago I was talking to someone who was on ldn for fibromyalgia and stopped--she was really miserable with symptoms and bug crawling thing (which is also something a lot of woman get during menopause) which made me think of demodectic mange which is purely a immune disorder in puppies where the normal little bugs that they have over power them and cause horrible itchyscrathces. and I wondered if this the same thing and as soon as the immune system was better this particular symptom would go away. cyndi On Sep 29, 2006, at 2:22 PM, Dr. Carol wrote: Yes, Sandi, I am on it for Fibromyalgia. It has decreased the symptoms of nystagmus (which most people with Fibromyalgia do not have -but those with MS do), and also the feelings of like bugs crawling on the skin (that aren't there). Other than that, I haven't noticed anything, but if this helps my over all immune system to regulate, then it's worth it. I was waking up during the night for awhile, but not so much anymore. I have no other side effects, and feel LDN is very worth taking! Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2006 Report Share Posted September 30, 2006 Conni, I am thrilled to read your story. I have been wondering how you and your son are doing. This is such good news. God bless you both! Kathy Re: [low dose naltrexone] Re: Fibromyalgia I think I wrote this before - about a month ago I was talking to someone who was on ldn for fibromyalgia and stopped--she was really miserable with symptoms and bug crawling thing (which is also something a lot of woman get during menopause) which made me think of demodectic mange which is purely a immune disorder in puppies where the normal little bugs that they have over power them and cause horrible itchyscrathces. and I wondered if this the same thing and as soon as the immune system was better this particular symptom would go away. cyndi On Sep 29, 2006, at 2:22 PM, Dr. Carol wrote: Yes, Sandi, I am on it for Fibromyalgia. It has decreased the symptoms of nystagmus (which most people with Fibromyalgia do not have -but those with MS do), and also the feelings of like bugs crawling on the skin (that aren't there). Other than that, I haven't noticed anything, but if this helps my over all immune system to regulate, then it's worth it. I was waking up during the night for awhile, but not so much anymore. I have no other side effects, and feel LDN is very worth taking! Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2006 Report Share Posted October 16, 2006 darlene, do you have to take any narcotics along with the guai or do you pretty much control your fibro pain with the guai. do you follow all that diet stuff. like no pepperment. no csrbs etc? i am starting to read up on this stuff. i have ordered the books. marsha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 hey, darlene, i went to see the primary care today and he said he is familiar with fibromyalgia and he does not think that is what is wrong with me. he changed my antidepressent from zoloft to cymbalta which is suppose to work on pains. and then i am suppose to build up the dose. so i will try this and see if it helps. meanwhile i bought all the books ever written about fibromyalgia. maybe i will read them anyway. but he tried my trigger points and i felt nothing. i did tell him i was having a lot of anxiety and that i thought this was from the narcotics. he said he did not think so. but i think so. i just want to get this whole thing resolved bec. i have a lot of pain in my lower back and i want to ret the RF ablation done again and my pain doctor won't do it until all this other stuff is under control. sucks. big time. but from what you describe, i think i have a lot more mobility and energy than you do. in a way, i was happy when i thought this pain stuff had a name and an explanation, finally. oh well, back to the drawing boards. marsha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Whenever there isn't anything else going on with me (like the neck injury I'm currently dealing with) and as long as I don't overdo it (I can handle some of my farm chores, chopping wood for 4 hours would definitely be overdoing it) the guai keeps me comfortable. I don't think I will ever be completely pain free because I have back injuries and arthritis on top of my FM, but without the guai, I sit and rock and cry. With it, I only need an occassional pain pill. The no peppermint is part of the no salicylates I was telling you about. It's weird but sals you ingest in food don't seem to affect the guai, only salls in herbal supplements or things that come in contact with your skin like soaps, creams, etc. Toothpaste is the big hangup for me. I loved my Colgate mint, now I'm using a kid's flavored toothpaste that is sal free, but just doesn't have the same kick. As to the diet, Lord help me, I try. But I live on a farm. I was a fresh bread baker, a cookie maker, and taters were a staple of most dinners. Carbs were my mainstay. It's so hard to change that. But I'm not gonna quit trying. The south beach diet is perfect for this program. For that matter it's about the healthiest diet out there for anyone. If you choose to do this, be prepared to commit several months to it for a trial. The first days are so hard but having a preset time frame seems to help people thru them. I'll help you anyway I can. Darlene > > darlene, do you have to take any narcotics along with the guai or do you > pretty much control your fibro pain with the guai. do you follow all that diet > stuff. like no pepperment. no csrbs etc? i am starting to read up on this > stuff. > i have ordered the books. marsha > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 Bonnie, can you tell us the names of these 2 doctors? Thank you! Nina Re: Fibromyalgia Hi Marj: I know someone with Lyme Disease that told me there are two doctors worldwide that specialize in treating people with this disease. One doctor in New York State told this person that the Tick that bit him, had 2 viruses, so this guy is being treated for Lyme, Bartonella and Babesia. The treatment is working and he is feeling much better. So there is hope. This lady friend of mine who has Fibromyalgia is upset enough with this and I want to find some material for her to read, showing that VCO might help her. I don't want to scare her now, with this Lyme information. Baby steps. Bonnie -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.11/492 - Release Date: 10/23/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 mark, what were your symptoms for the fibromyalgia and how did your doctor diagnose that you actually have fibromyalgia? did you go to a pain doctor or an arthritis specialist or a nerve doctor or your primary care to get diagnosed? thanks, marsha p.s. i am about to start reading all those books about coping with fibromyalgia and treating it with the " guan " (something like that). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 My fibro is from the onset of the spinal stenosis and the mylopothy. The neurosurgeon was the one who explained it to me with a number of different tests that where done for everything else the EMG shows the more sensitive areas. You'll know if you have fibro it's constant all over not just in one particular area!! They keep mine in check with the baclofen,lycira,valium.oxyi and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 MARK, the reason i ask is that i truly believe that i have fibromyalgia. as a result of the surgery i had on may 22nd for L3-L4 stenosis and spondylothesis, with cage,rods, screws and the whole nine yards. someone in this group suggested it was trauma induced fibromyalgia. and i went to my primary care doctor last week and he is like no, no. you don't have it. so they are treating it with antidepressants. particularly the one that they are now treating diabetic pain with. i can't think of the name of it right now. but i feel like i have the worse case of flu ever. every joint and limb in my body pulsates pain. and i am having a terrible time sleeping, and i am fatigued all the time. just so not a good combination. i am seeing a nerve doctor next week. but, really, they were able to diagnose your fibro from an emg? that is very curious. i think i am definitely going to ask the nerve doctor about it next week. my neurosurgeon was great. but he is the type that does the surgery. the surgery was successful (and it was). he is done with me now. next!!! i am truly sorry for everything you are going through, mark. i read your posts all the time. i have been on this website for several years also. thanks, marsha any more information you can give me about the fibro would be so appreciated. My fibro is from the onset of the spinal stenosis and the mylopothy. The neurosurgeon was the one who explained it to me with a number of different tests that where done for everything else the EMG shows the more sensitive areas. You'll know if you have fibro it's constant all over not just in one particular area!! They keep mine in check with the baclofen,lycira,particular area! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Nina: I only know the name of the one doctor - Dr. Bock of Rhinebeck, NY Bonnie Re: Fibromyalgia Hi Marj: I know someone with Lyme Disease that told me there are two doctors worldwide that specialize in treating people with this disease. One doctor in New York State told this person that the Tick that bit him, had 2 viruses, so this guy is being treated for Lyme, Bartonella and Babesia. The treatment is working and he is feeling much better. So there is hope. This lady friend of mine who has Fibromyalgia is upset enough with this and I want to find some material for her to read, showing that VCO might help her. I don't want to scare her now, with this Lyme information. Baby steps. Bonnie -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.11/492 - Release Date: 10/23/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 They tried the Amitriptalyne for about 4 months but i was up talking to my dead father so I stopped taking those. The baclofen, lyrica and valium all work very well ounce you get them balanced out in your system. After having C0,C1, C2, C3, C4 DONE the bone they took for the grafts fusions was painful. Living with the halo was horrible but half my pain is gone but the stenosis continues to move along. Mark from Boston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 darlene, even tho my primary care said it is not fibromyalgia, i still think it is. my PC is very negative about the fibro to begin with. also he pressed key points on my body but i am full of narcotics for the pain. uh, duh. i am sorry to hear that you too are joining our painful back group. this stuff is no fun. oh well. welcome aboard anyway. i had laser surgery years and years ago with nothing. i think you want to find out about minimally invasive surgery. i know a man that had that done for stenosis and he is doing just great. marsha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 darlene, what new test that might be a possibility? and what link to the support group you joined? marsha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 Hi Marsha, sorry it took so long to get back to you. I'm glad you talked to your doc about the FM. Go ahead and read the books anyway, there are no definitive tests for FM and when it's in its early stages, it's not always easy to diagnose. In the meantime, hearing the doc say he doesn't think it's that made me feel good for you. I hate it when someone gets this. And guess what? I've joined ya'll's club myself, not just for hubby's back fusion. My MRI came back saying that the bus wreck I was in in Feb left me with a herniated disc in my upper back, and probably two pinched nerves. Next doc appt we decide what my next step will be. Has anyone had any experience with the laser surgeries? I understand they are less invasive and the fusion option is always there if they don't work. Any recommendations in my area? (Southwest Ohio) Sure would appreciate it. KYAC, Darz > > hey, darlene, i went to see the primary care today and he said he is > familiar with fibromyalgia and he does not think that is what is wrong with me. he > changed my antidepressent from zoloft to cymbalta which is suppose to work on > pains. and then i am suppose to build up the dose. so i will try this and > see if it helps. > meanwhile i bought all the books ever written about fibromyalgia. maybe i > will read them anyway. but he tried my trigger points and i felt nothing. i > did tell him i was having a lot of anxiety and that i thought this was from > the narcotics. he said he did not think so. but i think so. i just want to > get this whole thing resolved bec. i have a lot of pain in my lower back and i > want to ret the RF ablation done again and my pain doctor won't do it until > all this other stuff is under control. sucks. big time. but from what you > describe, i think i have a lot more mobility and energy than you do. in a > way, i was happy when i thought this pain stuff had a name and an explanation, > finally. oh well, back to the drawing boards. marsha > > > Quote Link to comment Share on other sites More sharing options...
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