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Sunshyne4u
Member
06-17-2003
| Tuesday, January 01, 2008 - 7:59 pm
BUT I should add HAPPY NEWYEAR!! here's hoping that everyone here has reached a Plateau! So many cases end up stopped at a certain stage and never progress.
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Sunshyne4u
Member
06-17-2003
| Tuesday, January 01, 2008 - 8:05 pm
I've done everything that Dr has said...except the Ribose. I wonder if I can find it in Canada. Thx for posting that. I will do research. Part of my New Years focus will be Nutritional Balancing. I KNOW that I must be deficient in some stuff because my diet so extremely restrictive. But truthfully, I feel so much better if I dont eat anything. ((((sharinia, while I appreciate your input, plz just post stuff for everyone not specifically for me. I am starting to feel like you are trying to 'convince' me that your way is 'the way'. I also have No way to know whether you were anywhere near my progression and combination of probs. ))
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Karuuna
Board Administrator
08-31-2000
| Tuesday, January 01, 2008 - 8:34 pm
Pamy, I actually did well when we went to Disney, as long as made sure I got enough sleep. I was pretty dead when I got back tho. Needed a few days to just rest. I decided to go ahead and order the Energy Revitalization Formula. I'll let ya know what I think. I'm a bit nervous about it since when I have taken B complexes before, it's messed up my sleep.
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Karuuna
Board Administrator
08-31-2000
| Tuesday, January 01, 2008 - 8:37 pm
Sunshyne, I'll bet you can find ribose in Canada, or order it at a USA site, and have it shipped there? Needs.com ships to Canada for an extra charge.
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Moderator
Moderator
06-30-2002
| Wednesday, January 02, 2008 - 7:14 am
Several posts have been removed from this thread. Please find this a place for support and sharing - Thanks! 
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Rubyroo77
Member
08-13-2005
| Wednesday, January 02, 2008 - 9:12 am
Sharinia- could you please tell me more about what you did to feel better? I have been on antibiotics for 60 days now, and have 30 more but I am not sure if I should take them yet- I am taking them for my roscea-it got really bad, but when I stopped it after 30 days, it came right back (really bad)..and that is when all of the weird stuff started up again (worse)..So I wondered if it was killing something in my body and that it's a herxheimer..it had started when I was going through lyme treatment. I really don't know, but I am interested in what you have to share. Sun- please tell me more about what this is. I have had it for 2 years, and I do have the swallowing and choking problems. I don't understand this very much..can you explain it more to me please? I really appreciate everyone here and I am grateful for the help and comfort! Pamy- I also really hurt standing around, too. I hope you have a fun time..hang in there! Karuuna-thank you very much for taking the time and posting that! Holly, I am so sorry you are having a tough time.
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Mameblanche
Member
08-24-2002
| Wednesday, January 02, 2008 - 2:38 pm
I had a headache last night so I took a Motrin and went to bed. Spent today in bed reading til about 4pm still have the headache. I'm pretty sure its a stiff neck from being at the computer that is causing the worst of it. Also I tend to sit sideways so my neck is twisted. Yes... I know. Dumb. Anyhow, I'm trying to remember to sit facing the puter not twisting my poor bod. Dh is always catching me all twisted up and points it out to me. I sometimes don't even notice I'm doing it. Anyhow, I'm all achey today all over, not just the headache. But wanted to differentiate that the headache is due to me being dumb, the rest of my achiness is due to the usual arthritis & FM crap.
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Dahli
Member
11-27-2000
| Wednesday, January 02, 2008 - 4:16 pm
MB, are you well hyrated? I've been very lucky regarding headaches once I started paying attention to my water/mineral balance.
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Mameblanche
Member
08-24-2002
| Wednesday, January 02, 2008 - 5:04 pm
Dahli, you're a genious! I usually have a glass of OJ a least 2x a day and I have not been doing that at all the past few days. (Not a huge plain water fan) Anyhow, I'm going to pour myself a big glass of OJ with dinner (chicken soup). Between the soup and the juice I hope that will set things right. I still have that stupid headache.
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Karuuna
Board Administrator
08-31-2000
| Wednesday, January 02, 2008 - 5:54 pm
Man, there is a lot of stuff here! Here is the second installment! I don't know whether to feel hopeful or overwhelmed! SECOND INSTALLMENT Plug for Dr T’s book: From Fatigued to Fantastic Oz: Please define CFS for us. DrT: In real life, if you have the paradox of being exhausted and can’t sleep and it doesn’t go away with vacation, you’ve probably got this process. In addition if you also ache all over, upper/lower body, left and right, not all at the same time, it can move around, then you’ve also got FM. And most people who have one have the other. Only about 25% of people have only CFS. The key thing – exhausted and can’t sleep, you’ve blown a fuse, you have the energy crisis. The hypothalamus goes off line In addition, muscles use a lot of energy. Think about writer’s cramp, your muscles don’t go loose and limp, or rigor mortis, where they go rigid as a board. If you don’t have energy, your muscles get locked in the shortened position and it makes you hurt all over. So that’s why these illnesses represent an energy crisis. Oz: What about treatments? DrT: As you mentioned the SHIN (sleep, hormones, infection, nutrition) protocol,is the recipe for restoring energy production in the body. S –Sleep (recommend natural remedies) But also for FM patients, the sleep center is so malfunctioning, you need medications in addition to the natural remedies. Ambien is excellent and about half the people find it works as well as Ambien CR. The diff is that Ambien is now generic and much less expensive than CR. Trazodone, klonopin, neurontin, there are a host of things that are very good for sleep. Oz: how long are you comfortable prescribing these to people for? DrT: As long as they need. Oz: A year? DrT: A lifetime if they need it. You have to understand [you need that] to retrain. The sleep medications like Phenobarbital are horrible. I refuse to use them. But these newer ones are okay for long term use. Most people find after two years, they can get rid of most of these treatments. I like to continue the natural treatments, vitamins and sleep remedies – either natural or half an ambien as insurance. I do the same thing, because I had CFS and FM in 1975. If they need it long term, I don’t have a problem with that. I do with high blood pressure meds. If you look at the safety, they are safer than HBP medicines and safe for long term use. The ones I suggested are non-addictive. You want to do whatever it takes to get 8 hours sleep, that’s critical. Most listeners who have FM are saying that doctor is crazy, there is no way I can get 8 hours sleep. But having treated over 3000 people, I guarantee you that 99% of you can get 8 hours a night with what we talk about it in the book. Oz: If I can interrupt you. I am intrigued by how difficult it is to find doctors who can treat FM. (shares personal story about patient he has who needs heart surgery, but has FM, how many doctors she’s seen, but no one has been able to help her). Why don’t we have a movement of doctors to treat this? DrT: That is now happening, which is the exciting thing. Most people have a hard time finding the right doctor. It’s kind of like if they came to me for a heart bypass surgery. And they said here’s a book from bypassed to fantastic and a scalpel, (everyone laughs) I just don’t do that, it doesn’t make me a bad doctor. Most doctors don’t know how to treat FM. They’re not bad doctors, they just don’t know. And they don’t know that they don’t know. Oz: Is there an association? How do you find a doctor who does know? DrT: Let me make this very simple for people. There’s a group called the Fibromyalgia and Fatigue Centers. The website is www.fibroandfatigue.com. Or they can go to my website, vitality101.com and find a link to it. These are doctors all over the country that are experts. I’ve trained them, they know what they are doing. They will get over 85% of people doing better. And even if you live out of town, you fly to the center, they’ll do the initial treatment and follow-ups can be done by phone. Because if you go to a doc that knows what they are doing, they will get you well. Holistic doctors are much better at treating this disease, because they listen to the patient and not just the blood tests. Again, go to these centers and get well now. It’s that easy. Also, at my website, www.vitality101.com, there’s a computer program that people can do, and usually we charge, but we are making it free for the next month in your honor. You can do the short form program, it will analyze all their symptoms and tell them what they need to do to treat their CFS and FM – it will tailor treatment to their case. I actually hold a patent for this. Oz: before you get back into detailed treatment, let me ask you about infections. I know that it’s part of the protocol. I’ve had that question about chronic Lyme disease and whether it’s real or not (Both docs agree that they believe it is real). But there is an argument about that. What’s that all about? What about Lyme Disease makes it chronic? And even when it’s gone, it can leave you with CFS. DrT: Why the controversy? Because of money and misunderstanding. The insurance co’s don’t want to pay for disability caused by chronic Lyme and they don’t want to pay for treatment needed for it. Lyme Disease is one of dozens of diseases that can blow a fuse and trigger CFS. Once you’ve gotten that, it’s not enough to do antibiotics, you have to treat SHIN (sleep, hormones, infections, and nutrition). What makes Lyme so insidious is that in people who have a genetic predisposition, it triggers an immune dysfunction that results in people getting many diff infections. The blood tests will not show chronic infections, they only show acute infections. So these people blow a fuse, they get multiple other associated infections, and the antibiotics if not given long enough…. The symptoms come back. In real life, the doctor needs to treat the long term Lyme, not just antibiotics, but also SHIN. Then they will get better. Oz: What about fungal infections? Are they the cause or the effect? DrT: Both. Yeast overgrowth, many people will get an infection that will trigger their CFS and FM, but they also get a lot of antibiotics, which will treat the yeast too. The way that you can tell it is yeast, because there is no test – is nasal congestion, sinusitis, and spastic colon. If you have any of these three things, along with FM, if you treat the yeast overgrowth, (in the book) avoid sugar, take probiotics, and take diflucan (200 mg a day for 6 weeks). If you do that, not only will the FM improve, but the sinusitis goes away, and so does the spastic colon. HORMONES: Oz: We covered sleep, but what about Hormones. You sent me a bunch of stuff, but I never knew how difficult it could be to read a simple hormone panel. DrT: The problem with hormones is that the testing is not reliable. The doctors look at the test and if it’s says your normal, then you’re normal. But you have to understand where normal range comes from. The normal range is based on two standard deviations. They take 100 tests, the highest and lowest 2.5% are defined as abnormal and the 95% in the middle are defined as normal. So say I wanted a normal range for shoe size. If you are wearing a size 5 shoe, that would be considered in the normal range, even if you are a size 11! Next time the doc says your thyroid is in the normal range, give him a size 5 shoe and ask him to wear it all day, because it is within the normal range of shoe sizes. You have to treat based on Symptoms! There are a lot of new things coming out that are in the book. Viral infections – now that we have oral anti-virals that are effective, these are being dramatically successful in the subset of our patients that have viral infections--three quarters of the patients that have CFS and FM. At the centers we have now treated several hundred people this way, and 75% of them are having dramatic improvement, often their CFS/FM are gone! Oz: So infection is the etiology for a lot of these cases, or has hitchhiked on. DrT: Absolutely. You have to look for a whole spectrum of infections: parasites, bacterial infections. Lyme is just one of dozens of infections, it gets a lot of attention, it’s just one of the pieces of the puzzle. You have to treat all the infections present, and the effects are dramatic. Oz: but it’s hard to tell if they have the infections. How do you know what to treat? DrT: The things you look at are the symptoms, also there is a way you can look at the blood tests. I’ll give antiobiotics if anyone has a low grade persistent fever – anything over 98.6, because most people that have this disease have a low body temp, 97’s. So even if they are 99 I’ll go with antibiotics. If they have chronic lung congestion. If they have a history of being allergic to multiple antibiotics, it’s usually not an allergy, but a die-off reaction. If they have scalp scabs, or if they have a history of having their CFS/FM improve when they took antibiotics in the past. I’m going to go with an antibiotic, usually cipron or doxycycline. Or Cipromax. Studies show that patients often improve with Cipromax, even when they’ve had normal testing. So it’s reasonable to give it a trial. If they have chronic flu-like symptoms, and it started with a flu-like sickness and the blood tests show an old infection, with HHV6 or (something else), at a certain level most docs say it’s an old infection. But often it’s still active even at low numbers, we will go with the antivirals, but that takes 4 months before people start feeling better, and 6 months for a full course of treatment. Oz: Okay, back to hormones. What are the top three? DrT: number one, you have to treat thyroid in virtually all these patients. It is not adequate to treat with synthroid, which is what most doctors use. You have to use the natural Armour thyroid because it has the active thyroid hormone in it, it’s basically a bioidentical hormone. You need to adjust it not to get the blood test in the normal range – you adjust to the dose that feels the best to that person. If they get shaky or hyper, like they had too much coffee, you lower the dose. Most doctors just try to get your blood test normal and they don’t use the right form, because many people can’t turn synthroid into the active hormone. Part two of that, ignore the TSH blood test, which is what most docs use, and is totally unreliable in people with FM, and many people with CFS. Only look at the (freeT4) blood test you get that in the normal range, and what feels best. Other docs say if you get it too high, you can get heart failure. But you don’t see that if the T4 is in a normal range. You are more likely to get heart failure if you leave the thyroid too low. Oz: Why is that (TSH) thyroid stimulating hormone should normally go up, why does it not go up in FM patients? DrT: Because as we see the energy crisis that is going on in the US, the hypothalamus, which makes the TSH go up, is energy starved, and because it is, it can’t make the TSH needed. That’s why the test is unreliable. Oz: Okay, what’s the number two hormone? DrT: That would be adrenal support. We see adrenal problems become adrenal exhaustion. Your adrenal gland is your stress handler, with all the stress today, that gland is constantly firing and it gets exhausted. The tests only pick it up when they are basically destroyed and it’s going to kill you. Most people run a cortisol of 20 in the morning, but 6.1 is still considered normal while 5.9 can kill you. And the readings can vary 4 to 8 points on the same vial of blood! You can use a natural hydrocortisone, or you can use OTC-- there’s an adrenal stress-m product that’s wonderful. I like the natural hydrocortisone because the studies show that up to 20 mg per day it’s very safe. Over that you can see toxicity. Adrenal problems are often missed and don’t get treated So, if you get irritable when hungry--I’ll ask a spouse, do you have periods where it’s like a switch goes off and you have 3 minutes to feed her or she’ll kill you? That means she needs adrenal support. END OF SECOND SEGMENT.
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Pamy
Member
01-02-2002
| Wednesday, January 02, 2008 - 8:04 pm
Kar, I am anxious to hear how you like the system you ordered, pls let us know how it goes wow, thanks again for transcribing that!!
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Sunshyne4u
Member
06-17-2003
| Wednesday, January 02, 2008 - 10:21 pm
excellent POST by those doctors. I'm sure everyone noticed that they have said exactly what I've said in previous posts a few months ago! I love that they brought in the Lymes connection!!!! Rubyroo and I could both benefit from SHIN!! Ruby, I sincerely hope you continue to take your antibiotics no matter what we all say. It would be best to Check with your doctor if you think the meds arent working 'right' in your body. I had to change one of the antibiotics during my Lymes protocol. It is very possible that it isnt the best choice for you. I know you didnt ask me the question directly but I'd love to know what you mean by "weird stuff came back". By the way, I too was told I had roscea ...but abix never helped I'm really pleased you shared about the Lymes treatment. It is very possible that you need a retreatment. Once is not always enough. Lymes affects nerves from what I recall. the cysts can live thru the treatment and flare back up again later. I find an extremely restrictive diet and Organic food helps. I find this symptom one of the weirdest I have. Flashing lights/Peripheral waves/phantom images in corner of eyes my eye specialist found nothing wrong and I was bewildered. For a short while I thought I was being haunted or something. http://www.canlyme.com/patsymptoms.html My one of my specialists is a Director of the Canadian Lymes Board it seems. I didnt know until now LOL
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Sunshyne4u
Member
06-17-2003
| Wednesday, January 02, 2008 - 10:36 pm
Late in 2002, this group reported that: "In the future, it is likely that the upper limit of the serum TSH euthyroid reference range will be reduced to 2.5 mIU/L because 95% of rigorously screened normal euthyroid volunteers have serum TSH values between >0.4 and 2.5 mIU/L." The actual Normal levels that most doctors use is .5 to 5.0. I'm not sure if anyone here has a background in statistics but the Bell curve is falsely skewed due to the fact that the middle range of 2.5 is NOT the median. If 95% of the population is below 2.5, the median Should Be around 1.6. so like the doctors say in Karunna's post, many people are not being treated as per their symptoms. I was one of them. Always on the extreme low end of normal and even with the loss of half my hair I couldnt convince the doctor of the problem. Thank GOODness the endocrine officals have finally changed the values !! okay, I'm tired and cold. Need to get into a bath to warm up but I dont think I'd be able to get out again LOL That has already happened stuck in the bath and I dont care to repeat it. after an hour I started to panic a bit LOL Tough Living alone with no one to help. I'd NEVER call 911 because the people who would show up would be previous COWORKERS !! who would be familiar with me from Emergency. I would never be able to live down the humiliation of knowing that I was stuck in a tub would be Gossip Fodder throughout the hosptial LOL
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Dahli
Member
11-27-2000
| Thursday, January 03, 2008 - 9:08 am
MB, I'm not going to lecture you but OJ is not the same as water and since it's lacking all the fibre an orange has is actually quite high in sugar... and you know what that means LOL! Try adding a little lemon to the water but try to get more water, even some herbal tea would be a better option than that OJ, especially if you're trying to drop pounds. JMHO!
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Mameblanche
Member
08-24-2002
| Thursday, January 03, 2008 - 10:55 am
Dahli, I LOVE lemon in icewater! That's what I ALWAYS order when I'm in restaurants. Dad was diabetic and he always had a big jug of icewater with lemon slices in it. It's a wonderful astringent to push the grease out of one's tummy. I just like to have the OJ at home, with pulp for the vitamins and fibre.
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Dahli
Member
11-27-2000
| Thursday, January 03, 2008 - 11:28 am
Terrific! eat the oranges instead - lose the ice cubes and you're doing fab!! 
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Rubyroo77
Member
08-13-2005
| Thursday, January 03, 2008 - 2:23 pm
Kar- the website you have in the article is: http://www.fibroandfatigue.com/ Thank you for transcribing this one, too. I still have to finish reading it. Sun- I will answer you later or tomorrow- I am having a bad day today. I hope everyone is doing ok!
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Karuuna
Board Administrator
08-31-2000
| Thursday, January 03, 2008 - 3:03 pm
Ruby, thanks for catching that! I went back and corrected the link. I'm thinking of making an appt with the center that is about an hour from here. Can't decide since I've had almost no pain for the last week! yay! But just a little bit the last two nights, compared to none the whole week before. I know I'm still not as healthy as I used to be, before all this started. I do have some of the collateral symptoms they described, like chronic sinusitis.
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Mameblanche
Member
08-24-2002
| Thursday, January 03, 2008 - 4:25 pm
((((Kar)))) sinusitis is so painful. I had it once, years ago, and it was one of the worst weeks of my life. I was lucky, cuz it never came back. I used something like Sine-aid or Sine-off or whatever over the counter meds the doc suggested. I hope yours leaves you and never returns too.
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Sunshyne4u
Member
06-17-2003
| Thursday, January 03, 2008 - 4:41 pm
) I think part of the disappointments of having a syndrome is how it can present so differently and in so many stages of illness. And truthfully, Chronic Fatigue and Pain are side effects of so many OTHER recognized conditions like Cancer, a routine post operative state, some Nerve disorders from Diseases like Shingles or lymes etc...lots of stuff. I did some reading ONLINE yesterday about the causes of Death for Fibromyalgia CF patients....cancer, heart disease and suicide! ((If I recall correctly, I now cant find the link- I was surprised as all those deaths can be attributed to other conditions NOT fibro itself)) Snip* The link between psychological disorders and fibromyalgia is very strong and problematic. Certain studies report that between 50% and 70% of fibromyalgia patients have a lifetime history of depression. that surprised me too. http://preventdisease.com/diseases/fibromyalgia.html snip* The following website is building a database of natural remedy brands that it tests and rates. Not all are available yet. http://www.ConsumerLab.com/ The Food and Drug Administration has a program called MEDWATCH for people to report adverse reactions to untested substances, such as herbal remedies and vitamins (call 800-332-1088). It is extremely important for patients to realize that any herbal remedy or natural medicine that has positive effects most likely has negative side effects and toxic reactions, just as any conventional drug does. Everyone is strongly advised to consult a physician before using any untested products or dietary supplements, and to discuss potential interactions with any medications being taken. It should be strongly noted that alternative or natural remedies are not regulated and their quality is not publicly controlled. In addition, any substance that can affect the body's chemistry can, like any drug, produce side effects that may be harmful. There have been a number of reported cases of serious and even lethal side effects from herbal products. Now I'm tired and this is making me think too hard LOL
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Sunshyne4u
Member
06-17-2003
| Thursday, January 03, 2008 - 4:43 pm
Ruby, dont feel I am 'demanding' answers. It is only if you chose to share what you mean. I have so much 'weird' stuff it could mean 'anything' I usually dont come read here (althought it seems like i've been living here for a month LOL)
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Sunshyne4u
Member
06-17-2003
| Thursday, January 03, 2008 - 5:25 pm
Ribose (Corvalen)-An Exciting New Discovery! Corvalen (D-Ribose by Valen Labs) OKAY!!!! not only have I found a D - ribose in Canada, it's right from downtown Vancouver LOL http://www.canadadrugsuperstore.com/more.asp?ProductID=64918&se=Google
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Pamy
Member
01-02-2002
| Thursday, January 03, 2008 - 7:17 pm
Sun, great news!! I cant wait to hear how you like it Hope all my FFF are having a great pain free day 
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Mameblanche
Member
08-24-2002
| Thursday, January 03, 2008 - 10:53 pm
I have lined up a job interview tomorrow. I am so fatigued and achey this week, even tho I had a cleaning lady here and she did all the scut work.
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Pamy
Member
01-02-2002
| Friday, January 04, 2008 - 12:23 pm
Mame, the last time you went for a job you had a bad bout of it, didnt you? I think you should just work at home...or if possible...not work!...or do something you truly enjoy hope you feel better soon xoxoxoxo
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