# CFS



## 19696

Has anyone experienced hoarseness with their sore throats?


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## M&M

Hi Miasue!I've never experienced hoarseness with my CFIDS sore throats. I do, however, experience hoarseness when my allergies flare up, or if I have a cold, or something like that.Maybe another member will have more information than me!


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## 20796

I do a bit, but I also smoke, so that's not much constructive help...


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## 19696

Though what is strange is that as soon as I get a sore throat, I lose my voice and immediately begin to feel the grip over my body as with a flu, with the weakness, extreme fatigue,stiff and sore joints (especially neck), fogginess and eye discomfort. With the return of my voice and sore throat my strenght is restored. Oh well...I do really appreciate your response.Thank you.


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## 19696

I just got back from seeing my Rheumatologist better known as Aleve(!) and a different anti-depressent. I am so angry I could cry...So, I've had to cut my work hours by 10 hrs. per week, so I have less income, have to pay more money for medical insurance, have memory issues, tender lymph nodes, sore throat no voice and have no strength, but just take some Aleve and an anti-depressant and that will do the trick?????????No wonder I can't take this illness seriously, doctors obviously don't!!!!!!! No recommendation for B-12 shots, a Epstein Barr test, nothing! It's as if they are saying, " Go home and live it!" Are there any doctors who take this seriously. The quality of my life has plummetted! Help please...................


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## M&M

(((((((((((((((((((hugs)))))))))))))))))))))))) to you Mia. I can just hear the frustration in your words. I have also felt the very same way at times. To go to the doctor, who is supposed to help you, and for them to not have any answers, and not even any suggestions, or hope, is so incredibly frustrating. And it has made me quite angry at times. Of course, we know this disease is real, and we know that Alleve will most likely not be much help...Unfortunately, I don't have any great advice, I just wanted you to know that you have been heard. I know for certain that I have felt the very same way...Usually I come home, scream and cry a bit, and post a rant on here.You are not alone. And I'm so sorry that we have to deal with such frustrating situations.


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## 19696

Thanks M&M. Though I hoped to hear about some miracle cure, from your reply, I can gather that there is truly nothing medically that the medical field can do for me at this time. I just can't believe that with our technology and understanding of the human body, there is nothing to counter the symptons that CFS victims must deal with. God bless those with AIDS or Cancer, I can't imagine what it must be like for them. So, I do feel heard and I feel fortunate that you are out there...


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## Clair

Miasue {{{hugs}}}







I can totally emphathise with your frustration.For many of us with CFS/ME in this country it has taken us a long time and a long hard battle to get the medical profession on our side. But do not give up hope there are doctors and specialists out there (although there is no miracle cure) who believe in you and are willing to work with you to help you control and stabilise your symptoms then set about hopefully trying to improve them. The first step is to find a GP in your area who is understanding and supportive - they dont need to be all knowing just one is willing to make you all the referrals you need. Often word of mouth from other ME sufferers is a good way to find these. Is there a local ME/CFS group? consider joining it will be veritable mine of useful information on local services etc.Consider joining the http://www.actionforme.org.uk or meassociation.org.uk they can offer you practical advice and guidance on all sorts of issues that effect Me/CFS sufferers and if your unable to work or working very little will help you fight your corner in claims for financial support from the government in terms of benefits etc. They also offer listening ear services from other ME sufferers sometimes a problem shared when your feeling alone can be a good thing...and then there is us, were not the fastest responders in the world due to our condition but we do care and we do know how you feel and what your going through. your not alone, dont feel as if you are.{{hugs}} clair xx


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## 19696

Clair,I truly felt your words in my heart...your gentle wishes resonate deeply within me and I thank you. I have never been part of a forum before but now that I am, I am astounded by the circle of love and support I've observed and personally felt. You all must be angels and this illness must be occuring in our lives for a reason, I only hope to realize that reason in my lifetime.Of course, my search has led me to a new technology about Glycoproteins? How this revolutionary technology is allowing people to self heal from Cancer and Diabetes, Fibromyalgia and on and on. It sounds too good to be true! Does any one have any experience with such supplements? Does it work???Again, hugs to all of you out there who reach out in support...


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## 19696

Oh, PS...And yes, I have found a support group in my area and I can't wait to meet everybody there and to learn as much as I can about this! It is a week away and I am so ready and open for it!Thanks again.


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## M&M

Hi Mia!Great advice from Clair. (what's new?







)As for the Glycoproteins...Well, honestly, I don't have any personal experience with that, but I do have an opinion on it... Personally, any time I read about anything that claims to cure such a huge range of completely unrelated diseases, I am more than skeptical. I guess after having ME/CFIDS for years, and reading about all the "miracle cures", and seeing NO results from any of them, I am highly skeptical when I hear about another so-called "miracle cure". I honestly believe that if and when the medical community finds a true cure for any disease, it will be widely known, and widely publicized. After all, it will be worth a LOT of money, and a LOT of notariety.My stance has always been "If it sounds too good to be true, it probably is." But I would never ask you to substitute my judgment for your own. If you do decide to try the Glycoproteins, please let us know your experience with it!


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## 19696

Hello M&M,Yes, I hear you...I am afraid of that. It is quite expensive but I am desperate and want so much for something to help. The video I watched made sense and the presenter noted that many health and science magazines are beginning to report about the technology and he gave the names and dates of positive articles reporting the amazing findings! If I manage to save the money for it and order it...you know, I will surely keep you posted!


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## 19696

FYI:"In August 1996, researchers at Mannatech took a giant step in securing a proprietary position in the rapidly changing, constantly expanding nutritional supplement industry with the filing of a new set of composition and use patent claims for a unique, nutritional supplement-AmbrotoseÂ® complex. This nutritional supplement provides raw materials for the body to use to promote optimal cellular communication.* It is a glyconutritional, a blend of specific plant saccharides that provides support for the immune system. These saccharides are necessary for the body's creation of glycoforms, the structures on cell surfaces used to "talk" to other cells. Saccharides show promise for more health benefits. An increasing number of scientists believe that certain carbohydrates represent the next frontier in the search for non-toxic compounds that support the immune system. Even though we have just begun to scratch the surface in understanding the full potential of these carbohydrates, the research being reported in just the last decade has ignited a new level of hope and cautious optimism with some of the world's leading immunologists. Good communication between cells supports: Proper gland and organ function.* Proper system function, including your natural defense and endocrine systems.* Optimal health.* In an industry where natural products have become the new national focus, no technology offers more promise than the discovery and use of certain carbohydrates. Some researchers call AmbrotoseÂ® complex one of the most important and exciting nutritional discoveries in recent years."Worth researching. Will report any helpful info I may find.


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## Clair

Thanks M&M







Miasue - I'm also of the same opinion as M&M, anytime a supplement or new medical treatment that comes out claiming to fix so many problems, more often than not its too good to be true. Unless it it has widely been trumpeted by the british medical association and had extensive trials over many years then it probably is a load of old hokum.Before parting with your hard earnt money, it might be worth getting the opinion of some specialists in the area. In the UK there are two doctors who specialise in CFS/ME that may be able to advise: Dr Sarah Myhill who has done extensive work into diet, nutrition and supplements in ME/CFS and Dr Charles Shepherd who is the http://www.meassociation.org.uk medical adviser.You can find both by just typing their names into google...Dr Myhill does work privately but she is very supportive and helpful, a friend of mine who has recovered from ME/CFS swears by her.I cant get her website working at the moment but that may just be a temporary technical glitch. Just be careful before handing your money over, is all im saying.Best wishes and {{{hugs}}}Clair xx


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## 19696

Clair hello!Oh, do believe that I hear you and believe me, the last thing I need to do is to part with the little money I do have since it is in surch short supply for me now. I figure, this supplement comes in various sizes and I will, in a desperate attempt to heal, order the least costliest amount of the supplement to try out first. I am so grateful to you and M&M for being so concerned and suggesting caution. But, please hear me; I have to beat this, I have to!!! I cannot accept being like this for the rest of my life. I've always been known to have had tons of energy and for never being able to sit down. My family laughed at me because we would rent a movie and I could never just sit. I've always had to have several projects going on at one time. My husband was often frustrated because the vacuum would be out (he would often trip over it several times in a day), there would be a basket of wash on the couch to fold, a magazine and/or book opened over there and some pages printed from the internet long forgotten and left in the printer. I would often start a project and then something else would catch my attention and off I would go to tinker with it. Oh, it was such fun! By the end of the day all projects would be completed but even though tired, I would still be exploring things to do or to plan to do for the next day. I was never bored nor knew what it meant to be bored. There was always so little time and so many wonderful things to do. Now, here I sit wondering what one thing I can accomplish with the little energy that I do have. I know you all have probably experienced this and realize that I am a mere novice with this illness. Perhaps too, it may be typical for persons newly afflicted with the illness to go through a stage of dealing with CF/ME where one desperately seeks a cure... I can only say that doing something, anything that may offer me a sliver of hope is so necessary for me now to cope with this thing that is ravaging me. I must not spiral into depression, because I don't know what will happen to me then. I pray and hope and expect a miracle. Perhaps depression is not something I can fend off over time with this but I must cling to the hope that I can.I am sorry, I am rattlling on. I just continue to give the Universe thanks that there are people that I can reach out to since no one in my life seems interested in listening to me rant about this. There is a an old saying, "When you laugh, the whole world laughs with you but when you cry, you cry alone..."Though true, my tears will bring me to this site and thus so far, I have found that there is someone out there to listen. Blessed be.Lupe


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## Clair

Miasue







bless you.Let me impart some pearls of wisdom that have been invaluable to me since having CFS/ME. I hope you don't think I'm trying to be patronising, its something someone told me and it was one of the biggest things that helped my ME/CFS improve alot.First of all, there is nothing wrong with hoping for a miracle cure (what is there without hope?)







, but the biggest favour you can do for yourself is accept at this moment in time as it stands...this is how the situation is. Its called acceptance..and its a big part of the healing process. Learn to accept what you have teaches you how to live with and deal with it effectively. In time this will come right now I suspect your going through the denial stage and possibly feeling more than a little frustrated.You have CFS/ME, suddenly out of nowhere simple things you could do last year, are a momentous struggle. You cant figure out why, you could always do 101 things and used to rush around like a blue bottle! stop. CFS/ME is an energy illness (amongst other things) suddenly you have only say a 10th of the energy that people around you have. try to think of each day as a points system (bit like weight watchers but without having to spend the fee). work out what takes most and least energy and give them a score, from household chores, to socialising, reading a magazine, resting, listening to music etc give each a points score to how draining you find it. then you have to get smart. you have to work out ways of getting things done that you want to happen, but without physical cost to your health. One word: prioritise! if you have only 10 points a day to spend...then only ever spend 10 points, do what is most important to you (and make sure fun is included in that 10 points)after that tough luck..it can wait until tomorrow. Your health is not worth risking just to do that extra pile of ironing, or cleaning the car or whatever.Is the world going to blow up coz the laundry doesnt get done as often as it used to in the past? er No.Does it matter if your house isn't as tidy as it used to be? er No. Others may call it being selfish or lazy, we call it self preservation and working smart to help us get better.Find new ways of doing what you did before, do the food shopping online instead, get your husband to pay for a cleaner once a week instead of you struggling to do it...or get him to do it!Do not feel bad that you have to go lie down for hours simply because you managed to walk to the end of the street! your body is telling you something..listen to it.In ME/CFS there is this concept. its called a glass ceiling. We constantly remember what we were like prior to the CFS/ME and what we could achieve before. we struggle on forever it seems constantly trying and failing to reach those targets and then feel a failure when we can't get there. We just can't seem to break through that glass ceiling we bang our heads against it, knacker ourselves out and end up putting ourselves into a relapse. It is only when we accept that things have changed and perhaps they have changed forever, that we stop banging our heads against that glass ceiling and learn to redefine and redesign our lives.Its a hard lesson to learn for sure, it took me a long time. for every action there is a consequence...we just have to learn to be better planners, and accept even the best laid plans go by the wayside sometimes.For example, I know that if i go out to work all day I don't have the energy to also have the social life I used to. So I save my social life for my holiday periods, rest of time I stay home enjoy a glass of wine and watch the TV instead.I cant do shopping in town unless I come home and lie down for a sleep afterwards. So I plan, 1 hour shopping, 4 hours rest.Oh dear I seem to have spent my 10 points already today? okay that ironing, washing up, project has to wait until tomorrow...etcIts not being selfish...its the only way IMO you can ever learn to live with and get by with this illness. But the only way your going to stop banging your head on that glass ceiling and getting frustrated is to come to the realisation that this is how it is for the time being. That doesnt mean that a miracle cure isn't on its way, just means for the time being you have to rely on yourself to get better...so you need to get smart and spend those points carefully.I hope this makes a little sense, sometimes I get brainfog and end up rambling







but I hope your getting my drift







hang in there chick its a hard rocky path, but you are already a fighter and survivor for making it this far







{{hugs}} Clair xx


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## M&M

Wow, after reading what Clair wrote, suddenly my reply seems rather vapid! ROFL Clair, those are wise, wise words...Words that indeed do mean life, and happiness to me. You have just summed up everything we need to know about living with this monster. I'm glad you responded, as I wasn't up to writing such a wise, and eloquent response. Though I "ditto" everything you just said.**********************************************Lupe,I understand just what you are saying. I think you're right, especially in the beginning I was gung-ho to try and find a cure. You have to do what you can to help you keep your sanity. You are seeing things very clearly, and seem to be a rational individual. (Sometimes that's a rarity around here...ROFL







- Just kidding, just kidding) Do what you need to in order to keep your sanity, and a good emotional outlook.Dealing with chronic illness is a process, and I believe it does go in stages. For me, and I'm sure for others, it has been a grieving process...Because you do lose a lot - As you are already aware.Remember that, for now, there is no magic "cure" for ME/CFS, but there are sometimes ways to improve some of your symptoms, and that's an important quest. Some of the ways to manage your symptoms might be with prescription drugs, or various supplements...And some ways to manage your symptoms are simply modifying some aspects of your lifestyle.Do what you need to, and just try not to go bankrupt doing it.







Balance and caution are always advised, but at the same time, I don't want to be discouraging to you in your efforts to get better, or in your efforts to keep from feeling depressed and helpless. One thing is certain, whether or not we ever find a cure, we are never helpless. We are always valuable members of society, and have much to offer friends and family.This place has been a haven for so many of us, and I'm glad you found us too.


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## 19696

Thank you to you, Clair and M&M, I immensely value your clear wisdom and understanding.After some tears, I have found one message that continues to resonate through out this experience and that seems to be, accepting and working through things as they are. As I am sure you can tell, my stubborness has always had me knocking myself against walls. Professionally, I am an advocate and that trait has proven beneficial in my line of work. So...accepting things as they are and learning to "exhale and just be" will prove difficult in more ways that one. Perhaps this is the lesson I must learn from this. It surely will not be easy, I have never been able to relax "with myself." However, I will pray and focus on this for the following weeks. "Meditation" has always been another message that has come up often and I had always thought, ugh, how boring. Now, I am rethinking it.Who will I be with this? How will I enjoy the rest of my years? I guess I must focus on that and perhaps it will lead me to something far more empowering. This has been quite a humbling experience. Clair, M&M, You have no idea what your words are doing for me. I feel myself changing inside in so many ways.All I can continue to sya is, bless you both for the wonderful work you do.Miasue


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## M&M

Hi Mia!I am so very happy that some of our ideas and thoughts have helped you. I must agree with you, for me, learning to slow down, and live in the moment has been my biggest challange. I was very much like you before becoming disabled. Out of all the negative things ME/CFS have meant for me, being humbled and learning to be content as things are has been a HUGE blessing to me. This disease has brought much wisdom and personal growth to me (I'm not trying to toot my own horn, just wanted to let you know that good CAN come from it all).I have bumped 5 threads (I think it's 5, LOL) for you to look at related to HHV-6 and Epstein-Barr Virus (EBV). I hope you find the information interesting!


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## 19696

I am sorry M&M but I don't, " understand bumped 5 threats?" How do I get to it?I have read almost every post related to CFS/ME and have found them so interesting and valuable...miasue


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## 19696

TALK ABOUT BRAIN FOG!!!!!!!!!Not "threats", my goodness, THREADS", bumped 5 threads?"Oh, well, at least you understand, hee hee...miasue


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## M&M

Ah yes, who's day would not be complete without a bit of the wonderful Brain Fog?







No problem! "Threads" refer to the list of posted replies for each topic. We "bump" them by moving them back up to the top of the page.So, I searched the archived posts in our forum, and found 5 that talked about ME and HHV-6. Then, I bumped them to the top of the page.That means the top 5 topics in the "Fibro/CFS Forum" are the 5 topics about HHV-6 that I found in the archives.Does that help? I feel like I'm foggy too, so my explanation might not be the best.


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## Clair

Hey Lupe







no problem glad to be of some help.I can certainly emphathise with struggling to come to terms with how things are as they currently stand...I think with ME/CFS that is the hardest part of all.It takes time, so don't be angry or upset with yourself.If meditation doesn't take your fancy, what about listening to music while lying down on your bed and having some aromatherapy oils? any form of gentle relaxation while taking your mind off your troubles can always be relaxing.I personally buy myself a good novel, curl up on the bed listen to some gentle music..when the words become too much the book goes down and I close my eyes and before i know it im off in the land of nod.Or how about treating yourself to an all over body massage? I find them very therapeutic..feel totally brain fogged over but all those knots are sure gone!Please let us know, if we can help in any way.A couple of books I would recommend reading are: Living with M.E Dr Charles Shepherd (which is literally my bible







) and 'M.E. : Chronic Fatigue Syndrome : a Practical Guide'by Anne MacIntyre - just reading alot about it can be great therapy in itself because it helps highlight your not alone and that some of the quirky symptoms you have are all part and parcel of the ME/CFS.The last bit of advice i can offer is try not to get frustrated with yourself, a little bit at a time is the order of the day







unfortunately taking it easy is a lesson only you can learn for yourself...doesn't matter how much us old timers bang on about it







take care chickadee and hang in there, im rooting for ya







Clair xxxx


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## 19696

Hello!I am just getting over a difficult bout of CF/ME accompanied by Meniere's Disease which has it's nasty vertigo to go with it. I have been too weak to do much of anything. But this is what I would like to share, for whatever it is worth...A chiropractor had recommended Niacin for Menniere's in the past and actually had found it to work. I went back to work yesterday and was fearful that I would experience Vertigo and I hate the effects of Antavert for the dizziness. I felt lousy after work but found the energy to go to the drugstore and get some Niacin. I took two caplets at 500 mg. each and went to bed for a nap. At 3Am I awoke with so much energy that I had to get up. I felt absolutely great. I still have the sore throat and the cough and the swollen nymph nodes but I am alert and energetic. No body aches!So...I went on my computer and looked up, "Niacin and Chronic Fatigue," and this article came up. Can Niacin be of help? Could the Meniere's be part of the CF/ME? It's worth a try...Has anyone had any experience with high doses of Niacin?I will let you know how this develops...Peace,MiasueNADH and Chronic Fatigue SyndromeJames D. HajicekJune 15, 1999Some people believe that there is a relationship between CFS and Lyme disease, which consists of the fact that CFS may in some or in all cases be nothing other than misdiagnosed Lyme disease. My opinion is that CFS may be some kind of spirochete disease, but not necessarily the same species as those which cause Lyme disease. I also believe that there is a connection between pellagra and Lyme disease, in that pellagra is not merely a "vitamin deficiency" disease, but is in fact some kind of a Borrelia infection, similar to or the same as Lyme disease. In this regard, it should be noted that both CFS and pellagra have the unusual characteristic of affecting women twice as often as men. This identifies a mysterious relationship between CFS and pellagra that is also shared with fibromyalgia and lupus. For more information about the sexual inequity of pellagra see: Niacin and Pellagra - Part 2 Sexual Inequity Because niacin has been proven to be both preventative and curative for pellagra, I also have an interest in any aspect of niacin treatment in CFS. By searching the alt.med.cfs newsgroup for the word "niacin", it can be seen that some people have found niacin supplementation to be beneficial in treating sleeping disorders. Prior to making this search, I had discovered that taking a "megadose" of niacin has almost entirely cured my own chronic sleep disorder, which I assume was due to Lyme disease or something very similar to it. I continue to have other Lyme disease symptoms, which may improve with time, but the return to sound, restful sleep is definitely helping to solve my chronic fatigue problem. I was alerted to the use of NADH, the reduced form of nicotinamide adenine dinucleotide, in treating CFS by my friends in a Lyme disease support group in Madison, WI. One of these good people even sent me a copy of the entire NADH research paper. Ann Allergy Asthma Immunol 1999;82:185-191 Therapeutic effects of oral NADH on the symptoms of patients with chronic fatigue syndrome L.M. Forsyth, MD; A.L. MacDowell-Carnciro, MD; G.D. Birkmayer, MD, PhD; H.G. Preuss, MD; and J.A. Bellanti, MD Georgetown University Medical Center, Washington, D.C. This work was supported by a grant from Birksmayer Pharmaceuticals. ... The results of the present study show a beneficial effect of NADH ... In these preliminary studies, although we employed a dosage of 10 mg of NADH per day, it should be emphasized that different patients may have different needs. The reported feeling of one subject being overly stimulated, suggests that the dosage should be decreased. Other non-responding patients in contrast may require an increased dosage. ... For more information about Enada brand NADH see: Enada Home Pagehttp://www.enada.com Pro Health, Inc.http://www.immunesupport.com Menuco Corporationhttp://www.menuco.com The first two of these sites also have the complete research paper, cited above, which claims that Enada NADH is beneficial for patients with CFS. The tests were made with a dosage of 10 mg of NADH per day. However, the paper emphasizes that the optimum dosage may be more or less than this for different patients. One problem with the study is that the benefits were minimal, apparently 31% of the subjects reported at least a 10% improvement, compared to 8% of the subjects with improvement using a placebo. Please do not misunderstand me, every bit of benefit is valuable, but we also need to do better than this. NADH is derived in the human body from niacin or niacinamide. NADH is somewhat unstable, so Enada was developed, a patented formulation which is designed to allow a coated tablet to pass through the acid in stomach before dissolution. The 10 mg per day dosage is like a vitamin supplement. The patients who are helped must be deficient in NADH. Why? Perhaps there is some metabolic problem, or perhaps their daily niacin intake is being used up somewhere else, and is not available for making NADH. Either way, it seems obvious to try a strong, direct niacin or niacinamide supplement, and a more comprehensive study would have included some subjects with these treatments, as well as those with Enada and with the placebo. The RDA for niacin is 20 mg per day. Therapeutic dosages of niacin, amounts which have been used for various disease conditions, may be 100 mg per day, 500 mg per day, 3000 mg per day, or even higher. At any of these higher levels, more niacin would be available to make NADH in the body, perhaps eliminating the need for direct NADH supplementation. Caution: no one should take niacin or niacinamide in these amounts without first becoming well-informed about dangers and side effects. It is usually recommended that this kind of treatment be performed under the care of a physician. In Europe, NADPH, a related coenzyme, and NADH have also been used to treat Parkinson's disease and Alzheimer's disease. See the following patents: US Patent 4,970,200 Agent for treatment of Parkinson's Disease US Patent 5,019,561 Treatment of Parkinson's disease with NADPH US Patent 5,444,053 Method for treating symptoms of Alzheimer's with NADH and NADPH Searches for patents may be made on the following internet site: United States Patent Officehttp://www.uspto.gov The Georgetown University study for NADH and CFS seems to have been paid for by Birkmayer Pharmaceuticals, the patent holder for Enada. See the following patents: US Patent 5,332,727 Stable, ingestable and absorbable NADH and NADPH therapeutic compositions US Patent 5,712,259 NADH and NADPH pharmaceuticals for treating chronic fatigue syndrome. Who is now going to pay to have niacin and niacinamide tested in a similar manner? Niacin Therapy


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## 15683

miasue, & all others, just came across this site . wont wright long tonight because it'slate. brief summary, horribly sick from 1986 to 2004, many ups & downs, mostly down. two words,"mycoplasma & antibiotics". start at immed.org.search internet about mycoplasma, & long termantibiotic treatment. ton of info out there.i started by accident in 2002, hit & miss, havebeen on ceftin now for 19 mo's, 90% better.type in cfs & mycoplasma in your search, willpull in more info than you can handle. immed. org has list of doctors, be carefull,not all of them should be on list. good doctorin housten tx. patrica salvato, understands cfs& long term antibiotics. good luck, God bless,hang in there, i know your pain. remember, mycoplasma, antibiotics, i promise you, its the answer!


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## 19696

Thanks JS57,I am currently taking Zithromax because it turns out I had Bronchitis. I am also taking Prednisone for the lung inflamation and a pump for Asthma. It's being a fun summer! I did bookmark the Mycoplasma sites, thank you! What I can't understand is that I went to an infectious disease doctor and this was never mentioned??? Well..Thank you very much for the tip, I will be exploring this area further! Good luck to you and be well!miasue


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## Clair

Miasue,Well, as you may or may not know there is still much confusion in the medical profession about what causes ME/CFS. What may have been the trigger for one person, isn't necessarily the trigger for another. For example with me my ME/CFS was triggered by a bout of gastroenteritis, but I also had glandular fever on and off for ten years previously. One has to be wary about jumping to conclusions about what the cause is, and therefore while the medical profession doesn't know there is little chance of a cure. But scientific research is going on all the time, and we are gradually getting to know more about ME/CFS.It concerns me that there are so many people about claiming to know what the causes and therefore cures are, these are usually people trying to find an opportunity to exploit people with chronically debilitating conditions who are desperate to get better and more than willing to throw their money away in hope of a quick fix cure.I'm not saying in this instance that is what this person is doing, I would suggest when you next go to see your doctor take a list of pertinent questions to ask. If necessary ask whether they think you should be tested for x, y and z. Any good specialist worth his salt will give you a full work up on your bloods and urine, as well if necessary perform tests such as an MRI.I know its frustrating and your desperately looking for answers at the moment, but unfortunately the nature of this beast is rather mystical and the truth is no-one not even the medical profession know exactly the causes or cure at this time.But I commend you on your vigour to keep researching and learning more about the condition, getting yourself educated is a useful tool in learning how to deal with it.


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## 19696

Hello Clair,This has been so difficult. Each day I awake with the hope, I will be myself today, I can work a full day and recover financially, I can go shopping or exercise a bit, etc...With each day I embrace a higher, alas, tiny level of resignation and acceptance. My energy has been better with the Niacin and since it apppears that I am feeling alert and stronger while on it I figure I will stick with it for now. I continue to read anything I can on the illness and consider applying some of the suggestions that are easy or affordable. Yes, learning about the condition is a useful way to deal with it.I continue to try to help my body feel better so that I can improve the quality of my life a little each day and of course, I continue to pray with all of you for a cure...Thanks Clair!


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## Clair

Hey no problems Miasue







I know how hard it is, there is always that glimmer of hope at the back of all our minds that suddenly we may wake up one day 'normal' again or suddenly a 'miracle cure' will be available to us. When it doesn't happen naturally we feel deflated, depressed, miserable and frustrated, after all we are trapped in bodies that are not behaving themselves properly - alomst akin to being like a prisoner I reckon.All of what your feeling is normal, and its normal to grieve the loss of what we used to be able to do.. I bemoan the fact several times a day!







I wish you every success in trying out those little suggestions that are easy and affordable and hope for you that they bring some relief







keep us posted on your progress.One thing I know I'm investing in at payday is some of that isotonic lucozade powder...I find lucozade helps give me a little bit more energy when I'm feeling drained, a long standing friend of mine with ME says he cant get by without it. its expensive but worthwhile to give me a little bit of a lift in the afternoon when my energy levels get low.Good Luck and let us know how you go,{{{Hugz}}} Clair xx


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## M&M

Just a gentle reminder of the Terms of Service (you can click on the "Terms of Service" link at the bottom of the page)...


> quote: we do not actively monitor the contents of and are not responsible for any messages posted. We do not vouch for or warrant the accuracy, completeness or usefulness of any message, and are not responsible for the contents of any message. The messages express the views of the author of the message, not necessarily the views of this BB or any entity associated with this BB... You agree, through your use of this service, that you will not use this BB to post any material which is knowingly *false* and/or defamatory, *inaccurate*, ...Please note that chain letters, pyramid schemes, and *solicitations* are inappropriate on this BB. Commercial advertisements are welcome and may be freely placed in the "IBS Products, Info and Websites" forum. Commercial advertisements made to other forums may be moved without warning.


And from the "Notice and Disclaimer":


> quote: In no way are these documents meant to be a substitute for professional medical care or attention by a qualified practitioner, nor should it be implied as such. ALWAYS check with your doctor if you have any questions or concerns about your condition, or before starting a new program of treatment.


All treatment suggestions should be made in a way that is accurate. For example: "Here is something that helps me, you might want to try it too". Please avoid making promises or gaurantees...They smack of advertisement.


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## 17482

hello everyone, my name is wendy and i am a fibromyalgia sufferer. It makes me nuts that some people think it doesn't exist. Fibromyalgia is real! How and why would you wish the condition on yourself. I'm still not sure whether to call it a disease, or condition. What i do know is that it has completely taken over every aspect of my life, it has taken so much, although it never gives anything in return, only pain. I wish everyone nothing but the best.x


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## 19696

Welcome Wendy! I agree, I think it's nuts that people do not think Fybromyalgia does not exist! I know that there were tests conducted on me to determine whether I had Fybromyalgia but the tests came back negative. I feel that with Fybromyalgia and please correct me if I am wrong, there seemed to be more evidence that one had an illness than with CFS/ME. Either way, it is horrible to have your word doubted, for others to think this is all in your mind or that because you look ok, you must not be that sick. I struggle and worry with this daily. I hope you find support here, I certainly have.Hang in there.Peace,Miasue


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## 15683

Miasue, many doctors dont believe in cfs, lots of controversy concening mycoplasma, many doctors will not even look in this area, because they dont know about it, or they dont believe it. or they allready think they know how to treat it, (cfs). keep searching the web, & find a doctor who knows about mycoplasma & long term antibiotic therapy. they can run mycoplasma test's, but you have to find a doctor who knows about it, or believs it, or is willing to try.(good luck on that) i beg you, keep searching this area. i am well today, after 16 years of being horribly sick, because of long term anti biotics. hang in there! js57


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## 19696

Yes, the trick has been to find doctors who is knowledgeable in this area. I have had lousy luck. I live in a small city and the medical care here is inferior. I am attending a CFS/ME support group this Saturday and I hope to get as much info as possible in this area. Thanks for your support!miasue


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## Clair

Miasue,glad to hear your attending a support group - one of the best ways to find out by word of mouth whats available in your area and what to push for etc.I hope it provides you with lots of good practical ideas and positive leads.Hang in there and let us know how it goes,Clair xx


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