Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 I went to see Dr. Tietelbaum last Thursday night at our local health food store in Alameda, CA. He spoke for free for 2 hours. He spoke very quickly and covered a lot of ground. He stayed after and answered questions until everyone's questions were answered. I really think he's on the right track for CFIDS, not just CFS as I had been told to expect. He has written an updated version of FROM FATIGUED TO FANTASTIC and I got a free copy for being one of the first 20 people there. The room was pretty full. I think there were about 100 people there. There were a couple of people in the audience who kept shouting at him that he wasn't giving enough information and that he wasn't really able to help pwcs. He handled them very well. Where were they when I saw Dr. speak? And speaking of Dr. , I don't know how he can say his protocol is like Tietelbaum's, they are as different as can be. For one thing, DR. T never mentioned CBT! Yea for him! Dr. T gave all of us a sample packet (one dose) of his vitamin/mineral drink mix. I tried ~1/8 of the full dose and thought it tasted awful! I usually like vit/min drink mixes and I have 2 powders that I use on a regular basis. Anyway, I couldn't sleep that night and was soon very sick to my stomach. I was sick for days and became weak again. I had just gotten my system back on track before that night and had finally had a run of good days together. I looked at the ingredient list and there are 900 mg of Malic Acid in one serving! Thankfully, I only took ~ 1/8 of that! Here's what my cousin Hal Kristal says in his book, The Nutrition Solution about metabolic types and mag: " Magnesium was discovered to be acid forming to the Oxidative types. For the Slow Oxidizer, who is overly alkaline, this would be desirable as it would help to counteract their alkaline tendency by helping to acidify the blood. But for the fast oxidizer, (Hello!) who is already too acid, mag will tend to exacerbate their condition. Therefore, mag would be desirable for the Slow Oxidizer but undesirable for the Fast Oxidizer. " Yes, undesirable is an understatement. Yikes! Is more accurate. I will always check that mag level before I take anything again. Should Dr. T know this already and have two different packets for the different metabolic types? Yes, he should. I couldn't ask him as I didn't know at the time but I will e-mail him. He also had too much regular mag. And the wrong type of vit. C for my type. I'm wondering if different metabolic types explains the differences in how pwcs handle antibiotics. Some pwcs feel great on them and others of us can't take them at all. Penny says she does well with antibiotics and she tested as a slow oxidizer. I can't handle them at all since I got CFIDS and I'm a fast oxidizer. I wouldn't be surprised if there was a link there. Code: PWC- person/people with Chronic fatigue immune dysfunction syndrome sx- symptoms dx- diagnoses Anyway here are the notes from Tietelbaum's talk: * Half of us had sudden onset with a flu or injury and know to the day and hour when we got sick. Severe stress can cause it, pregnancy can and that is usually a gradual onset, yeast overgrowth can cause it. * Dr. T had sudden onset with a flu he considers himself recovered now but admits he has to carefully watch his protocol and will have to the rest of his life. * Dr. Tietelbaum accepts no money from any drug, supplement or any other company that would benefit by his protocol. He always tests with placebo controlled groups. * You need to be on his program (or any program) for 10 to 12 weeks before you start exercising or you'll crash. * The difference between CFIDS and FMS depends on what specialist you go to. * Treat your Candida (all pwcs have it) That means eliminate sugar from your diet * Chronic sinus infection is common and yeast overgrowth causes it. (This was the first sx that went away after I was on the anti-Candida diet.) * Antibiotics are often used to treat infections, like sinus infections, they cause yeast overgrowth which worsens the infection. The person takes more antibiotics which causes more yeast overgrowth which causes more infection and round and round and round we go. * The term CFIDS was meant to be informational not clinical. * CFIDS is a defense mechanism in your body that is reacting to stress. He used the analogy of a fuse box, when you blow a fuse it's a good thing or the house would burn down. * CFIDS causes no permanent damage to the body. There's no damage to the hypothalamus but it's down regulated. * Hypothalamic dysfunction is the circuit breaker that clicks off. * Your hypothalamus controls: hormones, sleep, body temp. blood pressure. Most pwcs have NMH, one way to tell is to sit on chair where your feet dangle, your legs will begin to ache badly if you have it. * The hypothalamus keeps the body protected. When the fuse turns back on, we look younger than we would have because all of our systems were slowed down to protect us. * If you want to turn your hypothalamus back on: get 8 to 9 hours of sleep a night, treat your hormonal deficiencies, treat your infections, treat your nutritional deficiencies. * Thyroid tests are missing 1/2 the people with the deficiency. All you need to test for thyroid is your free T4. Just because your thyroid test says that your thyroid is normal, it doesn't mean it isn't low. The way thyroid is measured would be like going into a shoe store and saying " Give me anything from size 6 to 14 and any of them will fit. " Thyroid meds have to be gotten through a pharmacy, not the health food store. Sinthroid is often ineffective. Armor is better, it's a biothyroid (?) Use thyroid meds with doctor's supervision as the meds can cause heart attacks. 70% of pwcs have Hashimotos disease. Also, your thyroid can be overactive and then would need to be treated differently. (I suspect I'm in the latter group which is something Dr. never even addressed.) * Hormone problems cause: disruption of day/night sleep cycle, low growth hormone, low DHEA, low thyroid, low testosterone, low cortisol, low estrogen, low oxytocin, thinning of eyebrows, dry skin and hair. One must continually adjust hormones to get a right fit. If you're feeling hyper, you're taking too much. * DHEA: is an adrenal hormone, it can cause acne. Have your sulphate levels checked every 2-4 months while taking it. Start with 10 mg. ( I can only handle 2.5 mg. A day. That's the amount Dr. Rosenbaum put me on and when I've tried taking 5 mg a day I broke out with a new kind of acne. I had to special order my 5 mg of DHEA because most stores don't sell it at such a low dose. I break it in half as my doctor suggested.) People with Lupis often feel better on 200 mg. of DHEA! * Adrenal Glands: Our adrenals go off with anxious stress and cause exhaustion, low blood pressure, hypoglycemia (irritability and shakiness relieved by eating). You can treat your adrenals with cortisol hormone pills which is a drug or with licorice which is natural but can be hit or miss. Panax Ginsing or raw adrenaline are natural remedies as well. Dr. T has lists of remedies, both drugs and natural, for each deficiency on his web site and in his book. Draw your cortisol before 9 AM but Dr. T believes that blood tests are useless to test this. Each pwc has to be treated individually depending on his/her sx. If your cortisol is too high it causes depression. Also, some pwcs have overly high levels of cortisol and have to be treated differently. (I've also heard doctors say that these levels can all fluctuate depending on time of day and month. When you're suddenly wide awake at 11:00 at night it could be because your cortisol just shot up. This is very common in pwcs.) * Low Estrogen: Blood tests are useless. Treatments for it are: Estradiol (a drug), he recommends natural progesterone instead of Provera for a natural treatment and don't take the Birth Control Pill. * Low Testosterone: check a " free " (active) level. You want it to be at the middle of the normal range. Only take natural products for this. * Sleep: It's not our bladders waking us up, normals have to pee when they wake up too. It's our sleep disorder, so don't drink less water to treat this. For sleep use; Valerian root, Passionflower, Lemon balm, Hops, Jamaican dogwood, or Wild lettuce, (all herbal remedies) Take 1 to 4 capsules before bed. (Herbal capsules always make me sick, but I do great with teas and tinctures. Traditional Medicinals has passionflower tea for sleep that I use and like.) Take any kind of calcium (Dr. T has no opinion yet about Coral Cal) but don't take it in the morning if you're on thyroid meds as it interferes with these. Take whatever you need to to get to sleep; if you don't get 8 to 9 hours of sleep your pain will not go away. * Immune Dysfunction is caused by (and causes): bowel infections like Candida and parasites which overgrow and thrive, sinus infections, UTIs, Mycoplasma, Viruses (EBV,CMV,HHV6) etc... Garlic gets rid of parasites Toxin binders like Questram can make you feel better in 2 weeks. * Candida sx: post nasal drip, confusion, recurrent infections, bowel problems. You MUST eliminate all sugar from your diet. For the best tasting natural sugar substitute use Stevia. The liquid drops are the best tasting and can be ordered at 1-800-4-STEVIA. It takes 6 to 12 weeks to treat yeast with a drug. (However, he didn't go into this, but when yeast goes into organs like the brain I've read that it can take 6 years on the diet to eradicate it with the diet and drugs are way too harsh to use for extended periods.) Nystatin, Diflucan and Spoinox can be used but they also hurt the liver. If you use these be sure to take lipolic acid to protect your liver. Natural remedies include: Caprylic acid which can cause reflux, Garlic, Oregano Oil and he had Colostrum with a question mark. (I want to add that the Candida they found in me, Caqndida Krusei-not Albicans, tested resistant to Nystatin and Diflucan and garlic but tested sensitive to Caprylic acid and Oregano Oil. I think you should get tested at a lab like Doctor's Data that tests your Candida and other bowel pathogens against natural remedies and drugs. Also, Colostrum makes some people sick, it did me.) Dr. T said there is no accurate test for Candida. * Nutritional Deficiencies: This is the most important thing to treat. Our American Diet causes a lot of malnutrition. The RDA for Bs is inadequate. Check your B12 with a blood test, if it's under 520 get shots. Check your iron and ignore the normal range. (Sorry, I didn't write the range in my notes in a way I can understand now; my notes say; " Ferritan<40 sat<22% " . It's Greek to me but maybe someone understands this. The " < " sign means less than.) We can have 50 different nutritional deficiencies so he sells a Daily Powder. (WARNING-CHECK YOUR METABOLIC TYPE FIRST!) Vitamins and minerals can be bought through his web site. Dr. T was asked about Coral Cal again. He polled the audience. 10 said they'd tried it. One said it helped. He recommends fish oil (I found out I'm allergic to fish) He says Eskimo by Tyler has the best fish oil, Nordic Naturals is good too. Do you have dry eyes and mouth? Then you're deficient in EFAs, take fish oil, flax oil, and/or almond oil etc... (only take the EFA oils). These oils are all good for your heart and cholesterol. Amino acids are plentiful in flax seeds and they raise glutathione. * Dry Eyes: You can get prescription Testosterone cream from a doctor and put it on your eyes. * What to eat: increase salt and water, elliminate sugar, eat what makes you feel good. (I had delayed reactions to ~10 of the foods I was regularly eating. I never knew they were setting me off. I had immediate reactions to 7 more foods.) Dr. T says that blood tests for allergies is useless, (I agree, I had Serial Endpoint Titration done) He says he has good testing for allergies but he didn't elaborate. He said the problem we have isn't from too much acid, it's poor digestion. * Pwcs are drinking 4 times as much water as normals but peeing 5 times as much so keep drinking water because you're probably dehydrated. Does your throat feel dry right now? Take a drink. * Some pwcs never catch colds, other pwcs catch everything that comes by. * The average weight gain for CFIDS is 35 lbs. * Brain fog is scary and our short-term memory is gone. It can be very disconcerting when you get peoples' names wrong, like your spouse's! 1/3 of us have disorientation where suddenly they don't know where they are. The difference between brain fog and senility: with brain fog you forget where you put the keys, with senility you forget how to use the keys. * Some pwcs need psychotherapy (not because CFIDS causes psch probs, remember CFIDS is just for information, it's not clinical.) If you go to a psychotherapist you should like him/her and feel better even though it's a tough process to go through. Be picky! * For All PWCS: No Blame No Worry No Fault Drop the worry. Ask yourself " Am I in immanent danger? " usually you're not. Be gentle with yourself. Do not make up for lost time when you feel good. Do what feels good. Believe that CFIDS/FMS are now treatable dds. * Dr. Tietelbaum's Web site has a program that analyzes test results and it's free if you're on Medicare (Medicaid?) Dr. T will pay you back if you buy his vit/min powder and it doesn't help. The END Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2003 Report Share Posted June 5, 2003 Your saliva cortisol was normal.What about DHEA? Nil Dr. Teitelbaum | | | | | I went to see Dr. Tietelbaum last Thursday night at our local health | food store in Alameda, CA. He spoke for free for 2 hours. He spoke very | quickly and covered a lot of ground. He stayed after and answered | questions until everyone's questions were answered. I really think he's | on the right track for CFIDS, not just CFS as I had been told to expect. | | He has written an updated version of FROM FATIGUED TO FANTASTIC and I | got a free copy for being one of the first 20 people there. The room was | | pretty full. I think there were about 100 people there. | There were a couple of people in the audience who kept shouting at him | that he wasn't giving enough information and that he wasn't really able | to help pwcs. He handled them very well. Where were they when I saw Dr. | speak? And speaking of Dr. , I don't know how he can say | his protocol is like Tietelbaum's, they are as different as can be. For | one thing, DR. T never mentioned CBT! Yea for him! | Dr. T gave all of us a sample packet (one dose) of his vitamin/mineral | drink mix. I tried ~1/8 of the full dose and thought it tasted awful! I | usually like vit/min drink mixes and I have 2 powders that I use on a | regular basis. Anyway, I couldn't sleep that night and was soon very | sick to my stomach. I was sick for days and became weak again. I had | just gotten my system back on track before that night and had finally | had a run of good days together. I looked at the ingredient list and | there are 900 mg of Malic Acid in one serving! Thankfully, I only took ~ | | 1/8 of that! Here's what my cousin Hal Kristal says in his book, The | Nutrition Solution about metabolic types and mag: | " Magnesium was discovered to be acid forming to the Oxidative types. For | | the Slow Oxidizer, who is overly alkaline, this would be desirable as it | | would help to counteract their alkaline tendency by helping to acidify | the blood. But for the fast oxidizer, (Hello!) who is already too acid, | mag will tend to exacerbate their condition. Therefore, mag would be | desirable for the Slow Oxidizer but undesirable for the Fast Oxidizer. " | Yes, undesirable is an understatement. Yikes! Is more accurate. I will | always check that mag level before I take anything again. Should Dr. T | know this already and have two different packets for the different | metabolic types? Yes, he should. I couldn't ask him as I didn't know at | the time but I will e-mail him. He also had too much regular mag. And | the wrong type of vit. C for my type. | I'm wondering if different metabolic types explains the differences in | how pwcs handle antibiotics. Some pwcs feel great on them and others of | us can't take them at all. Penny says she does well with antibiotics and | | she tested as a slow oxidizer. I can't handle them at all since I got | CFIDS and I'm a fast oxidizer. I wouldn't be surprised if there was a | link there. | Code: | PWC- person/people with Chronic fatigue immune dysfunction syndrome | sx- symptoms | dx- diagnoses | Anyway here are the notes from Tietelbaum's talk: | * Half of us had sudden onset with a flu or injury and know to the day | and hour when we got sick. Severe stress can cause it, pregnancy can and | | that is usually a gradual onset, yeast overgrowth can cause it. | * Dr. T had sudden onset with a flu he considers himself recovered now | but admits he has to carefully watch his protocol and will have to the | rest of his life. | * Dr. Tietelbaum accepts no money from any drug, supplement or any other | | company that would benefit by his protocol. He always tests with placebo | | controlled groups. | * You need to be on his program (or any program) for 10 to 12 weeks | before you start exercising or you'll crash. | * The difference between CFIDS and FMS depends on what specialist you go | | to. | * Treat your Candida (all pwcs have it) That means eliminate sugar from | your diet | * Chronic sinus infection is common and yeast overgrowth causes it. | (This was the first sx that went away after I was on the anti-Candida | diet.) | * Antibiotics are often used to treat infections, like sinus infections, | | they cause yeast overgrowth which worsens the infection. The person | takes more antibiotics which causes more yeast overgrowth which causes | more infection and round and round and round we go. | * The term CFIDS was meant to be informational not clinical. | * CFIDS is a defense mechanism in your body that is reacting to stress. | He used the analogy of a fuse box, when you blow a fuse it's a good | thing or the house would burn down. | * CFIDS causes no permanent damage to the body. There's no damage to the | | hypothalamus but it's down regulated. | * Hypothalamic dysfunction is the circuit breaker that clicks off. | * Your hypothalamus controls: hormones, sleep, body temp. blood | pressure. Most pwcs have NMH, one way to tell is to sit on chair where | your feet dangle, your legs will begin to ache badly if you have it. | * The hypothalamus keeps the body protected. When the fuse turns back | on, we look younger than we would have because all of our systems were | slowed down to protect us. | * If you want to turn your hypothalamus back on: get 8 to 9 hours of | sleep a night, treat your hormonal deficiencies, treat your infections, | treat your nutritional deficiencies. | * Thyroid tests are missing 1/2 the people with the deficiency. All you | need to test for thyroid is your free T4. Just because your thyroid test | | says that your thyroid is normal, it doesn't mean it isn't low. The way | thyroid is measured would be like going into a shoe store and saying | " Give me anything from size 6 to 14 and any of them will fit. " Thyroid | meds have to be gotten through a pharmacy, not the health food store. | Sinthroid is often ineffective. Armor is better, it's a biothyroid (?) | Use thyroid meds with doctor's supervision as the meds can cause heart | attacks. 70% of pwcs have Hashimotos disease. Also, your thyroid can be | overactive and then would need to be treated differently. (I suspect I'm | | in the latter group which is something Dr. never even addressed.) | * Hormone problems cause: disruption of day/night sleep cycle, low | growth hormone, low DHEA, low thyroid, low testosterone, low cortisol, | low estrogen, low oxytocin, thinning of eyebrows, dry skin and hair. One | | must continually adjust hormones to get a right fit. If you're feeling | hyper, you're taking too much. | * DHEA: is an adrenal hormone, it can cause acne. Have your sulphate | levels checked every 2-4 months while taking it. Start with 10 mg. ( I | can only handle 2.5 mg. A day. That's the amount Dr. Rosenbaum put me on | | and when I've tried taking 5 mg a day I broke out with a new kind of | acne. I had to special order my 5 mg of DHEA because most stores don't | sell it at such a low dose. I break it in half as my doctor suggested.) | People with Lupis often feel better on 200 mg. of DHEA! | * Adrenal Glands: Our adrenals go off with anxious stress and cause | exhaustion, low blood pressure, hypoglycemia (irritability and shakiness | | relieved by eating). You can treat your adrenals with cortisol hormone | pills which is a drug or with licorice which is natural but can be hit | or miss. Panax Ginsing or raw adrenaline are natural remedies as well. | Dr. T has lists of remedies, both drugs and natural, for each deficiency | | on his web site and in his book. Draw your cortisol before 9 AM but Dr. | T believes that blood tests are useless to test this. Each pwc has to be | | treated individually depending on his/her sx. If your cortisol is too | high it causes depression. Also, some pwcs have overly high levels of | cortisol and have to be treated differently. (I've also heard doctors | say that these levels can all fluctuate depending on time of day and | month. When you're suddenly wide awake at 11:00 at night it could be | because your cortisol just shot up. This is very common in pwcs.) | * Low Estrogen: Blood tests are useless. Treatments for it are: | Estradiol (a drug), he recommends natural progesterone instead of | Provera for a natural treatment and don't take the Birth Control Pill. | * Low Testosterone: check a " free " (active) level. You want it to be at | the middle of the normal range. Only take natural products for this. | * Sleep: It's not our bladders waking us up, normals have to pee when | they wake up too. It's our sleep disorder, so don't drink less water to | treat this. For sleep use; Valerian root, Passionflower, Lemon balm, | Hops, Jamaican dogwood, or Wild lettuce, (all herbal remedies) Take 1 to | | 4 capsules before bed. (Herbal capsules always make me sick, but I do | great with teas and tinctures. Traditional Medicinals has passionflower | tea for sleep that I use and like.) Take any kind of calcium (Dr. T has | no opinion yet about Coral Cal) but don't take it in the morning if | you're on thyroid meds as it interferes with these. Take whatever you | need to to get to sleep; if you don't get 8 to 9 hours of sleep your | pain will not go away. | * Immune Dysfunction is caused by (and causes): bowel infections like | Candida and parasites which overgrow and thrive, sinus infections, UTIs, | | Mycoplasma, Viruses (EBV,CMV,HHV6) etc... Garlic gets rid of parasites | Toxin binders like Questram can make you feel better in 2 weeks. | * Candida sx: post nasal drip, confusion, recurrent infections, bowel | problems. You MUST eliminate all sugar from your diet. For the best | tasting natural sugar substitute use Stevia. The liquid drops are the | best tasting and can be ordered at 1-800-4-STEVIA. It takes 6 to 12 | weeks to treat yeast with a drug. (However, he didn't go into this, but | when yeast goes into organs like the brain I've read that it can take 6 | years on the diet to eradicate it with the diet and drugs are way too | harsh to use for extended periods.) Nystatin, Diflucan and Spoinox can | be used but they also hurt the liver. If you use these be sure to take | lipolic acid to protect your liver. Natural remedies include: Caprylic | acid which can cause reflux, Garlic, Oregano Oil and he had Colostrum | with a question mark. (I want to add that the Candida they found in me, | Caqndida Krusei-not Albicans, tested resistant to Nystatin and Diflucan | and garlic but tested sensitive to Caprylic acid and Oregano Oil. I | think you should get tested at a lab like Doctor's Data that tests your | Candida and other bowel pathogens against natural remedies and drugs. | Also, Colostrum makes some people sick, it did me.) Dr. T said there is | no accurate test for Candida. | * Nutritional Deficiencies: This is the most important thing to treat. | Our American Diet causes a lot of malnutrition. The RDA for Bs is | inadequate. Check your B12 with a blood test, if it's under 520 get | shots. Check your iron and ignore the normal range. (Sorry, I didn't | write the range in my notes in a way I can understand now; my notes say; | | " Ferritan<40 sat<22% " . It's Greek to me but maybe someone understands | this. The " < " sign means less than.) We can have 50 different | nutritional deficiencies so he sells a Daily Powder. (WARNING-CHECK YOUR | | METABOLIC TYPE FIRST!) Vitamins and minerals can be bought through his | web site. Dr. T was asked about Coral Cal again. He polled the audience. | | 10 said they'd tried it. One said it helped. He recommends fish oil (I | found out I'm allergic to fish) He says Eskimo by Tyler has the best | fish oil, Nordic Naturals is good too. Do you have dry eyes and mouth? | Then you're deficient in EFAs, take fish oil, flax oil, and/or almond | oil etc... (only take the EFA oils). These oils are all good for your | heart and cholesterol. Amino acids are plentiful in flax seeds and they | raise glutathione. | * Dry Eyes: You can get prescription Testosterone cream from a doctor | and put it on your eyes. | * What to eat: increase salt and water, elliminate sugar, eat what makes | | you feel good. (I had delayed reactions to ~10 of the foods I was | regularly eating. I never knew they were setting me off. I had immediate | | reactions to 7 more foods.) Dr. T says that blood tests for allergies is | | useless, (I agree, I had Serial Endpoint Titration done) He says he has | good testing for allergies but he didn't elaborate. He said the problem | we have isn't from too much acid, it's poor digestion. | * Pwcs are drinking 4 times as much water as normals but peeing 5 times | as much so keep drinking water because you're probably dehydrated. Does | your throat feel dry right now? Take a drink. | * Some pwcs never catch colds, other pwcs catch everything that comes | by. | * The average weight gain for CFIDS is 35 lbs. | * Brain fog is scary and our short-term memory is gone. It can be very | disconcerting when you get peoples' names wrong, like your spouse's! 1/3 | | of us have disorientation where suddenly they don't know where they are. | | The difference between brain fog and senility: with brain fog you forget | | where you put the keys, with senility you forget how to use the keys. | * Some pwcs need psychotherapy (not because CFIDS causes psch probs, | remember CFIDS is just for information, it's not clinical.) If you go to | | a psychotherapist you should like him/her and feel better even though | it's a tough process to go through. Be picky! | * For All PWCS: No Blame | No Worry | No Fault | Drop the worry. Ask yourself " Am I in immanent danger? " usually you're | not. Be gentle with yourself. Do not make up for lost time when you feel | | good. Do what feels good. | Believe that CFIDS/FMS are now treatable dds. | * Dr. Tietelbaum's Web site has a program that analyzes test results and | | it's free if you're on Medicare (Medicaid?) | Dr. T will pay you back if you buy his vit/min powder and it doesn't | help. The END | | | | Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2003 Report Share Posted June 5, 2003 Also normal - a subsequent separate Testorozone test shoed that normal and DHEA slightly high Re: Dr. Teitelbaum Your saliva cortisol was normal.What about DHEA? Nil Dr. Teitelbaum | | | | | I went to see Dr. Tietelbaum last Thursday night at our local health | food store in Alameda, CA. He spoke for free for 2 hours. He spoke | very quickly and covered a lot of ground. He stayed after and answered | questions until everyone's questions were answered. I really think | he's on the right track for CFIDS, not just CFS as I had been told to | expect. | | He has written an updated version of FROM FATIGUED TO FANTASTIC and I | got a free copy for being one of the first 20 people there. The room | was | | pretty full. I think there were about 100 people there. | There were a couple of people in the audience who kept shouting at him | that he wasn't giving enough information and that he wasn't really | able to help pwcs. He handled them very well. Where were they when I | saw Dr. speak? And speaking of Dr. , I don't know how he | can say his protocol is like Tietelbaum's, they are as different as | can be. For one thing, DR. T never mentioned CBT! Yea for him! Dr. T | gave all of us a sample packet (one dose) of his vitamin/mineral drink | mix. I tried ~1/8 of the full dose and thought it tasted awful! I | usually like vit/min drink mixes and I have 2 powders that I use on a | regular basis. Anyway, I couldn't sleep that night and was soon very | sick to my stomach. I was sick for days and became weak again. I had | just gotten my system back on track before that night and had finally | had a run of good days together. I looked at the ingredient list and | there are 900 mg of Malic Acid in one serving! Thankfully, I only took | ~ | | 1/8 of that! Here's what my cousin Hal Kristal says in his book, The | Nutrition Solution about metabolic types and mag: " Magnesium was | discovered to be acid forming to the Oxidative types. For | | the Slow Oxidizer, who is overly alkaline, this would be desirable as | it | | would help to counteract their alkaline tendency by helping to acidify | the blood. But for the fast oxidizer, (Hello!) who is already too | acid, mag will tend to exacerbate their condition. Therefore, mag | would be desirable for the Slow Oxidizer but undesirable for the Fast | Oxidizer. " Yes, undesirable is an understatement. Yikes! Is more | accurate. I will always check that mag level before I take anything | again. Should Dr. T know this already and have two different packets | for the different metabolic types? Yes, he should. I couldn't ask him | as I didn't know at the time but I will e-mail him. He also had too | much regular mag. And the wrong type of vit. C for my type. I'm | wondering if different metabolic types explains the differences in how | pwcs handle antibiotics. Some pwcs feel great on them and others of us | can't take them at all. Penny says she does well with antibiotics and | | she tested as a slow oxidizer. I can't handle them at all since I got | CFIDS and I'm a fast oxidizer. I wouldn't be surprised if there was a | link there. | Code: | PWC- person/people with Chronic fatigue immune dysfunction syndrome | sx- symptoms | dx- diagnoses | Anyway here are the notes from Tietelbaum's talk: | * Half of us had sudden onset with a flu or injury and know to the day | and hour when we got sick. Severe stress can cause it, pregnancy can | and | | that is usually a gradual onset, yeast overgrowth can cause it. | * Dr. T had sudden onset with a flu he considers himself recovered now | but admits he has to carefully watch his protocol and will have to the | rest of his life. | * Dr. Tietelbaum accepts no money from any drug, supplement or any | other | | company that would benefit by his protocol. He always tests with | placebo | | controlled groups. | * You need to be on his program (or any program) for 10 to 12 weeks | before you start exercising or you'll crash. | * The difference between CFIDS and FMS depends on what specialist you | go | | to. | * Treat your Candida (all pwcs have it) That means eliminate sugar | from your diet | * Chronic sinus infection is common and yeast overgrowth causes it. | (This was the first sx that went away after I was on the anti-Candida | diet.) | * Antibiotics are often used to treat infections, like sinus | infections, | | they cause yeast overgrowth which worsens the infection. The person | takes more antibiotics which causes more yeast overgrowth which causes | more infection and round and round and round we go. | * The term CFIDS was meant to be informational not clinical. | * CFIDS is a defense mechanism in your body that is reacting to | stress. He used the analogy of a fuse box, when you blow a fuse it's a | good thing or the house would burn down. | * CFIDS causes no permanent damage to the body. There's no damage to | the | | hypothalamus but it's down regulated. | * Hypothalamic dysfunction is the circuit breaker that clicks off. | * Your hypothalamus controls: hormones, sleep, body temp. blood | pressure. Most pwcs have NMH, one way to tell is to sit on chair where | your feet dangle, your legs will begin to ache badly if you have it. | * The hypothalamus keeps the body protected. When the fuse turns back | on, we look younger than we would have because all of our systems were | slowed down to protect us. | * If you want to turn your hypothalamus back on: get 8 to 9 hours of | sleep a night, treat your hormonal deficiencies, treat your | infections, treat your nutritional deficiencies. | * Thyroid tests are missing 1/2 the people with the deficiency. All | you need to test for thyroid is your free T4. Just because your | thyroid test | | says that your thyroid is normal, it doesn't mean it isn't low. The | way thyroid is measured would be like going into a shoe store and | saying " Give me anything from size 6 to 14 and any of them will fit. " | Thyroid meds have to be gotten through a pharmacy, not the health food | store. Sinthroid is often ineffective. Armor is better, it's a | biothyroid (?) Use thyroid meds with doctor's supervision as the meds | can cause heart attacks. 70% of pwcs have Hashimotos disease. Also, | your thyroid can be overactive and then would need to be treated | differently. (I suspect I'm | | in the latter group which is something Dr. never even | addressed.) | * Hormone problems cause: disruption of day/night sleep cycle, low | growth hormone, low DHEA, low thyroid, low testosterone, low cortisol, | low estrogen, low oxytocin, thinning of eyebrows, dry skin and hair. One | | must continually adjust hormones to get a right fit. If you're feeling | hyper, you're taking too much. | * DHEA: is an adrenal hormone, it can cause acne. Have your sulphate | levels checked every 2-4 months while taking it. Start with 10 mg. ( I | can only handle 2.5 mg. A day. That's the amount Dr. Rosenbaum put me | on | | and when I've tried taking 5 mg a day I broke out with a new kind of | acne. I had to special order my 5 mg of DHEA because most stores don't | sell it at such a low dose. I break it in half as my doctor | suggested.) People with Lupis often feel better on 200 mg. of DHEA! | * Adrenal Glands: Our adrenals go off with anxious stress and cause | exhaustion, low blood pressure, hypoglycemia (irritability and | shakiness | | relieved by eating). You can treat your adrenals with cortisol hormone | pills which is a drug or with licorice which is natural but can be hit | or miss. Panax Ginsing or raw adrenaline are natural remedies as well. | Dr. T has lists of remedies, both drugs and natural, for each | deficiency | | on his web site and in his book. Draw your cortisol before 9 AM but | Dr. T believes that blood tests are useless to test this. Each pwc has | to be | | treated individually depending on his/her sx. If your cortisol is too | high it causes depression. Also, some pwcs have overly high levels of | cortisol and have to be treated differently. (I've also heard doctors | say that these levels can all fluctuate depending on time of day and | month. When you're suddenly wide awake at 11:00 at night it could be | because your cortisol just shot up. This is very common in pwcs.) | * Low Estrogen: Blood tests are useless. Treatments for it are: | Estradiol (a drug), he recommends natural progesterone instead of | Provera for a natural treatment and don't take the Birth Control Pill. | * Low Testosterone: check a " free " (active) level. You want it to be | at the middle of the normal range. Only take natural products for | this. | * Sleep: It's not our bladders waking us up, normals have to pee when | they wake up too. It's our sleep disorder, so don't drink less water to | treat this. For sleep use; Valerian root, Passionflower, Lemon balm, | Hops, Jamaican dogwood, or Wild lettuce, (all herbal remedies) Take 1 to | | 4 capsules before bed. (Herbal capsules always make me sick, but I do | great with teas and tinctures. Traditional Medicinals has | passionflower tea for sleep that I use and like.) Take any kind of | calcium (Dr. T has no opinion yet about Coral Cal) but don't take it | in the morning if you're on thyroid meds as it interferes with these. | Take whatever you need to to get to sleep; if you don't get 8 to 9 | hours of sleep your pain will not go away. | * Immune Dysfunction is caused by (and causes): bowel infections like | Candida and parasites which overgrow and thrive, sinus infections, | UTIs, | | Mycoplasma, Viruses (EBV,CMV,HHV6) etc... Garlic gets rid of parasites | Toxin binders like Questram can make you feel better in 2 weeks. | * Candida sx: post nasal drip, confusion, recurrent infections, bowel | problems. You MUST eliminate all sugar from your diet. For the best | tasting natural sugar substitute use Stevia. The liquid drops are the | best tasting and can be ordered at 1-800-4-STEVIA. It takes 6 to 12 | weeks to treat yeast with a drug. (However, he didn't go into this, | but when yeast goes into organs like the brain I've read that it can | take 6 years on the diet to eradicate it with the diet and drugs are | way too harsh to use for extended periods.) Nystatin, Diflucan and | Spoinox can be used but they also hurt the liver. If you use these be | sure to take lipolic acid to protect your liver. Natural remedies | include: Caprylic acid which can cause reflux, Garlic, Oregano Oil and | he had Colostrum with a question mark. (I want to add that the Candida | they found in me, Caqndida Krusei-not Albicans, tested resistant to | Nystatin and Diflucan and garlic but tested sensitive to Caprylic acid | and Oregano Oil. I think you should get tested at a lab like Doctor's | Data that tests your Candida and other bowel pathogens against natural | remedies and drugs. Also, Colostrum makes some people sick, it did | me.) Dr. T said there is no accurate test for Candida. | * Nutritional Deficiencies: This is the most important thing to treat. | Our American Diet causes a lot of malnutrition. The RDA for Bs is | inadequate. Check your B12 with a blood test, if it's under 520 get | shots. Check your iron and ignore the normal range. (Sorry, I didn't | write the range in my notes in a way I can understand now; my notes | say; | | " Ferritan<40 sat<22% " . It's Greek to me but maybe someone understands | this. The " < " sign means less than.) We can have 50 different | nutritional deficiencies so he sells a Daily Powder. (WARNING-CHECK | YOUR | | METABOLIC TYPE FIRST!) Vitamins and minerals can be bought through his | web site. Dr. T was asked about Coral Cal again. He polled the | audience. | | 10 said they'd tried it. One said it helped. He recommends fish oil (I | found out I'm allergic to fish) He says Eskimo by Tyler has the best | fish oil, Nordic Naturals is good too. Do you have dry eyes and mouth? | Then you're deficient in EFAs, take fish oil, flax oil, and/or almond | oil etc... (only take the EFA oils). These oils are all good for your | heart and cholesterol. Amino acids are plentiful in flax seeds and | they raise glutathione. | * Dry Eyes: You can get prescription Testosterone cream from a doctor | and put it on your eyes. | * What to eat: increase salt and water, elliminate sugar, eat what | makes | | you feel good. (I had delayed reactions to ~10 of the foods I was | regularly eating. I never knew they were setting me off. I had | immediate | | reactions to 7 more foods.) Dr. T says that blood tests for allergies | is | | useless, (I agree, I had Serial Endpoint Titration done) He says he | has good testing for allergies but he didn't elaborate. He said the | problem we have isn't from too much acid, it's poor digestion. | * Pwcs are drinking 4 times as much water as normals but peeing 5 | times as much so keep drinking water because you're probably | dehydrated. Does your throat feel dry right now? Take a drink. | * Some pwcs never catch colds, other pwcs catch everything that comes | by. | * The average weight gain for CFIDS is 35 lbs. | * Brain fog is scary and our short-term memory is gone. It can be very | disconcerting when you get peoples' names wrong, like your spouse's! | 1/3 | | of us have disorientation where suddenly they don't know where they | are. | | The difference between brain fog and senility: with brain fog you | forget | | where you put the keys, with senility you forget how to use the keys. | * Some pwcs need psychotherapy (not because CFIDS causes psch probs, | remember CFIDS is just for information, it's not clinical.) If you go | to | | a psychotherapist you should like him/her and feel better even though | it's a tough process to go through. Be picky! | * For All PWCS: No Blame | No Worry | No Fault | Drop the worry. Ask yourself " Am I in immanent danger? " usually you're | not. Be gentle with yourself. Do not make up for lost time when you | feel | | good. Do what feels good. | Believe that CFIDS/FMS are now treatable dds. | * Dr. Tietelbaum's Web site has a program that analyzes test results | and | | it's free if you're on Medicare (Medicaid?) | Dr. T will pay you back if you buy his vit/min powder and it doesn't | help. The END | | | | Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Tracey, what edition is the updated version of Teitelbaum's book? ----- Original Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 It just says " completely revised and updated " © 2001. Tracey TonytheTiger wrote: >Tracey, what edition is the updated version of Teitelbaum's book? > ----- Original > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Just a note re: Dr. Teitelbaum. My chiropractor gets the Townsend Letters, a medical publication that has articles easy for the lay person to read and very helpful with natural venues of treatments, and I peruse through it every time I go in. There is usually an article each time by this doctor about various aspects of health and I have found them quite informative, to the point of copying them each time I find them for my files. in La Selva Beach CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 --Dr T says all profits from supplements goes to charity. In my view CFS patients could do with some help, how about selling his supplements at cost price instead?! From memory I believe you need to pay to sign up for his latest thoughts from his website. His column his TLFD seems to be about promoting his supplements! Sunny thoughts Wallace - In , " Schmidt " <schmidtmba@...> wrote: > > Just a note re: Dr. Teitelbaum. My chiropractor gets the Townsend Letters, a medical publication that has articles easy for the lay person to read and very helpful with natural venues of treatments, and I peruse through it every time I go in. There is usually an article each time by this doctor about various aspects of health and I have found them quite informative, to the point of copying them each time I find them for my files. in La Selva Beach CA > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Five years ago I wasted a whole year trying out all of teitlebaums suggestions. It cost me a lot of money and didn't help me at all. When I examined the fine print in the back of his book (a tiny little paragraph next to his study results) it said that his treatment suggestions worked well for FM and were generally less successful for CFS. This wasn't mentioned anywhere at the front of the book or on his site where he generally talks up his treatments as cures for CFS. I was livid. I really don't like the way this man goes about his business Re: Dr. Teitelbaum --Dr T says all profits from supplements goes to charity. In my view CFS patients could do with some help, how about selling his supplements at cost price instead?! From memory I believe you need to pay to sign up for his latest thoughts from his website. His column his TLFD seems to be about promoting his supplements! Sunny thoughts Wallace - In , " Schmidt " <schmidtmba@...> wrote: > > Just a note re: Dr. Teitelbaum. My chiropractor gets the Townsend Letters, a medical publication that has articles easy for the lay person to read and very helpful with natural venues of treatments, and I peruse through it every time I go in. There is usually an article each time by this doctor about various aspects of health and I have found them quite informative, to the point of copying them each time I find them for my files. in La Selva Beach CA > > Quote Link to comment Share on other sites More sharing options...
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