Guest guest Posted September 25, 2003 Report Share Posted September 25, 2003 Dear makeyourdayhappy, I can't say that I have a good a knowledge of this as I would like, but I don't think anyone does at this point, so I will say some things that I think are true, based on the evidence available. I think that it is clear that there are problems with the cortisol levels in many PWCs, in the total cortisol secreted during a 24-hour period, in the average time variation of the cortisol levels during the day, and in the dynamic response of cortisol output to stressful events. I think it is also clear that many of the symptoms and signs in CFS (such as low blood sugar and low blood pressure) have faulty cortisol output as their proximal (direct) cause. This is not to say that CFS is the same as 's disease (primary adrenal failure). Rather, cortisol disturbances are one of the features of CFS. I think it is also clear that many PWCs have a lower than normal overall metabolic rate. The average metabolic rate is normally under the control of the thyroid, so this suggests that thyroid function should be examined in PWCs. This is not to say that low thyroid function is the cause of the lower than normal metabolic rate in many PWCs, but this is a possibility that should be checked. Dr. Lowe has made thyroid supplementation a cornerstone of his practice for treating fibromyalgia. It is important to take a coordinated treatment approach to the thyroid and adrenal issues, because one affects the other. Raising thyroid hormone levels, for example, can exacerbate problems with cortisol levels. The cortrosyn test involves giving a person a relatively large dose of a substance similar to the natural hormone ACTH, which normally acts as the signal from the pituitary gland to the adrenal glands to stimulate the secretion of cortisol and other adrenocortical hormones. This test determines whether or not the adrenals are able to secrete cortisol if given a large driving signal. A normal cortrosyn test shows that the person does not have complete adrenal failure ('s disease). The bicycle ergometry test involves having the person undergo aerobic exercise, and then measuring to see if the cortisol level in the blood rises, as it normally should, since the aerobic exercise constitutes a stress. This test looks at the dynamic function of the entire HPA (hypothalamus-pituitary-adrenal)axis, rather than at the adrenal function alone. It is often found that a PWC will have a normal, or nearly normal cortrosyn test, but will not have a normal response to the bicycle ergometry test. It has also been found that the adrenals have shrunken in size in many PWCs. These observations suggest that the problem is not with the adrenal glands themselves in these PWCs, but rather, it is higher up in the HPA axis, most likely in the hypothalamus or in higher brain centers that feed signals to the hypothalamus. This agrees with the conclusions reached by Mark Demitrack, et al., who studied the operation of the HPA axis in CFS several years ago. The question is what to do about this. There were some early experiments in which hydrocortisone (the same substance as cortisol) was given to PWCs at doses of 25 to 35 mg per day for several months. This did not prove to be beneficial, and it also made the PWCs dependent on the supplemental hydrocortisone. Other approaches have involved using lower dosages of hydrocortisone, such as 5 or 10 mg per day, or using licorice, which blocks the breakdown of natural cortisol, keeping its level in the body higher. Dr. Jeffries has written a book about the former. Dr. Baschetti in Italy has been the main proponent of the licorice approach. Dave , on this list, has also advocated use of licorice in the past. Supplementing with low dose hydrocortisone or using licorice does raise the cortisol level. The difficulty is that it still does not restore the dynamic function of the HPA axis, so that the PWC still does not have the proper moment-by-moment response to his or her total stress state that a normal HPA axis provides. In addition, taking supplemental hydrocortisone can cause the HPA axis to adjust in such a way that the body become dependent on the supplement. However, since the 24-hour averaged level of cortisol is low in many PWCs, it does provide an improvement for many to use one of these measures. Dave's most recent efforts in this area have involved attempts to anticipate what his stress level is going to be, based on the activities he is planning to engage in, and to adjust his cortisol level ahead of time accordingly. This is a difficult thing to do, and of course, it does not correct for unforeseen events that raise a person's stress level. But it is an attempt to match the cortisol level to the stress level in a better way than can be done with regular cortisol dosing. The late Dr. Poesnecker focused on the adrenal glands themselves, believing that the glands themselves were fatigued in CFS. He supplied nutrients particularly needed by the adrenals, as well as adrenal cortical extract to build the tissue in the adrenals. He reported some success with this approach. I think that it's probably true that some PWCs have actual fatigue of the adrenal glands themselves, but I also think that most PWCs have a problem elsewhere in the HPA axis. The test results that you report suggest that you are in the latter category. Dr. L. , in his book Adrenal Fatigue, discusses the book by Jeffries entitled " Safe Uses of Cortisol, " , and then says the following: " Although there are different therapeutic regimens for taking natural hydrocortisone, most conform to the normal 24-hour cortisol secretion of approximately 20 mg of cortisol. Jeffries recommends 5 or 7.5 mg orally before each meal and a bedtime. Other alternative physicians use an initial dose of 12, 5, 2, and 1 mg at 8:00 a.m., 12:00, 3:00, and 6:00 p.m., respectively. If sleep disturbances are part of the syndrome, 1 mg before bedtime might be helpful. " Dr. recommends gradually lowering the dosage after 6 months, and does not recommend using supplemental hydrocortisone for longer than 2 years. At this point, I think this is about the best advice I've seen on hydrocortisone supplementation in CFS, although I think Dave's efforts to more precisely match cortisol to anticipated stress level are very interesting. In regard to your question about the thyroid, I think it's important for PWCs to have their thyroid hormone levels measured, including TSH, T4 and T3, and including the " free " forms of the latter two. I also think it's a good idea to measure the armpit temperature upon awakening for a few days to see if it is averaging low, and to use natural forms of the thyroid hormones when supplementation is needed, such as Armour thyroid, both of which Dr. Broda suggested. If the thyroid hormones are low, I think that supplementation could be helpful. If they are not low, and the armpit temperature is still low, then I think there are several possibilities: One is that even though the free T3 is at a normal level outside the cells, it is not at a proper level or being properly utilized inside the cells. A deficiency in selenium is a possible cause of this. Many PWCs have mercury toxicity because of glutathione depletion, and mercury can complex selenium so that it is not biochemically available for the selenoenzymes that convert the thyroid hormones. Supplementing selenium may help in this case. Supplementing thyroid hormones may also help. I think it is worth a try. If this doesn't help, another possibility is that there are partial blockades in the intermediary metabolism, so that the thyroid hormones are not able to speed up the metabolism as they normally do. I think that this is the case in many PWCs. The recent benefits that several PWCs have been reporting from the use of FIR heaters and saunas suggest that this might be a helpful approach for many in this situation. The applied heat appears to be able to raise the metabolic rate in several PWCs for days after the use of the heaters or saunas. I think that's about all I have to contribute on this subject at present. Rich > Is there anyone out there who knows about this subject? If your > cortisol tested normal on a n A.M cortrosyn test (done over an hour), > but on a previous Bicycle ergonometry test your cortisol went down > post exercise (vs. up), would cortisol be warranted. How do you know > what dose is efficacious, for how long, without supppressing the > adrenal axis? > > What about thyroid. Does using it if you haven't seen test results > that say your T3 or T4 is ot of range, is it worth trying. I > understand there may be a risk of osteoporosis and possibly other > things. > > Also, has anyone seen Dr. J. Teitlebaum? What protocol did you go > on? Did you go on Cortisol and/or thyroid even if your tests were > negative? Have you seen an improvement? Was your visit/experience > with the protocol positive. How did it work for you if you visited > him from out of state re: being able to reach him if needed? Did you > have a local Dr. follow the protocol with you? > > Please only respongf if you have good knowledge of this as I am > already confused based on what I have read thus far. > > Heartfelt Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2003 Report Share Posted September 25, 2003 Wow, Rich, great summation. Possibly explains why I cannot handle stressful events anymore without sort of shutting down. So what do you think about taking the hydrocortisone every 3 days, as was recommended by someone on the list. And also, what about taking the B vitamins prior to the hydrocortison, as another person insisted is so important? Of course, Licorice is full of B vitamins. penny > > Is there anyone out there who knows about this subject? If your > > cortisol tested normal on a n A.M cortrosyn test (done over an > hour), > > but on a previous Bicycle ergonometry test your cortisol went down > > post exercise (vs. up), would cortisol be warranted. How do you > know > > what dose is efficacious, for how long, without supppressing the > > adrenal axis? > > > > What about thyroid. Does using it if you haven't seen test > results > > that say your T3 or T4 is ot of range, is it worth trying. I > > understand there may be a risk of osteoporosis and possibly other > > things. > > > > Also, has anyone seen Dr. J. Teitlebaum? What protocol did you go > > on? Did you go on Cortisol and/or thyroid even if your tests were > > negative? Have you seen an improvement? Was your > visit/experience > > with the protocol positive. How did it work for you if you > visited > > him from out of state re: being able to reach him if needed? Did > you > > have a local Dr. follow the protocol with you? > > > > Please only respongf if you have good knowledge of this as I am > > already confused based on what I have read thus far. > > > > Heartfelt Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2003 Report Share Posted September 25, 2003 My thanks to Rich as well. It took me months to accumulate the same information he summarized. In regards to the Every Third Day hydrocortisone/licorice treatment, it worked well for me this summer. However, toward the end of the summer, I crashed hard and have yet to recover to pre-treatment levels. Hydrocortisone still helps, but has lost most of its power to raise my blood pressure and reduce chest pain. I can't but help think that Rich is right that HPA problems are at play here. In addition, supplementing only cortisol ignores the fact that your adrenals produce over 80 other hormones. If you have exhausted adrenals, it may well be that other critical hormones aren't being produced in sufficient quantities either (e.g., epinephrine, which plays a key role in blood pressure regulation, such as with neurally mediated hypotension). - don > Wow, Rich, great summation. Possibly explains why I cannot handle > stressful events anymore without sort of shutting down. > > So what do you think about taking the hydrocortisone every 3 days, as > was recommended by someone on the list. And also, what about taking > the B vitamins prior to the hydrocortison, as another person insisted > is so important? Of course, Licorice is full of B vitamins. > > penny > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2003 Report Share Posted September 25, 2003 Penny, It's hard for me to suggest what you should do in regard to your cortisol, since I don't know what your particular adrenal situation is. The best tests to find out would be a cortrosyn test, a bicycle ergometry cortisol test, and a DiagnosTechs Inc. adrenal stress index test on your saliva. From these you could determine whether you have abnormal cortisol levels, and if so whether the problem is in the adrenal glands themselves or higher up in the HPA axis. If hydrocortisone is needed, I think that spacing it out could help to prevent your HPA axis from adapting to it and becoming dependent on it. With regard to the B vitamins and the other essential nutrients, I think it's best to test for deficiencies before deciding how to supplement. If this is not possible or practicable, then I favor taking a high-potency general nutritional supplement such as Sparx (www.krysalis-sparx.com) to supply the vitamins and minerals, an undenatured whey protein supplement such as ImmunePro (available from www.immunesupport.com) to supply the essential amino acids, and a tablespoon per day of flax oil to supply essential fatty acids. If you do this, you will have most of the bases covered in terms of getting enough of the essential nutrients. Most PWCs could also benefit from extra magnesium and injection of hydroxocobalamin (vitamin B12). Rich > Wow, Rich, great summation. Possibly explains why I cannot handle > stressful events anymore without sort of shutting down. > > So what do you think about taking the hydrocortisone every 3 days, as > was recommended by someone on the list. And also, what about taking > the B vitamins prior to the hydrocortison, as another person insisted > is so important? Of course, Licorice is full of B vitamins. > > penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2003 Report Share Posted September 25, 2003 Don, Did you try ACE before trying Dave's ETD? I thought I read some earlier messages of yours that you trid ACE and also the glandulars from wilson's web site. From your experience, do you think adding ACE to hydrocortisone/licorice is a good protocol? Are you still doing the ETD or did you stop after your crash? Since ACE has lot more hormones that the adrenals produce than just cortisol, do you think adding ACE along with cortisol will take care of the hormones that teh adrenals produce and be more helpful? I started on the glandulars from wilson(it has thyroid, adrenal, gonad and pituitary from porcine source). And also started on licorice and ACE this week. Afetr 2 weeks , I want to add cortef, ACE on the first day, licorice on the second day and nothing on the third day. But would be taking teh glandulars on all days. Is this an OK approach? Thanks, Gayathri. In regards to the Every Third Day > hydrocortisone/licorice treatment, it worked well for me this > summer. However, toward the end of the summer, I crashed hard and > have yet to recover to pre-treatment levels. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2003 Report Share Posted September 25, 2003 Yeah, I took ACE before and (at the end) of Dave's ETD therapy. I also tried Dr. glandulars and then the late Dr. Poesnecker's glandulars. Crashed anyway. I have an appointment with a cardiologist to check for neurally mediated hypotension (NMH). However, from what I understand of NMH, the brain fails to send the necessary signals to the adrenals to produce/release more epinephrine to speed up the heart when you stand up (hence, the blood pooling in the legs and low blood pressure). Treating NMH can involve the simulation of epinephrine release. However, if my adrenals are exhausted, it stands to reason that this approach may just cause another crash. - don > In regards to the Every Third Day > > hydrocortisone/licorice treatment, it worked well for me this > > summer. However, toward the end of the summer, I crashed hard and > > have yet to recover to pre-treatment levels. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2003 Report Share Posted September 25, 2003 Hello, I am one of the people experimenting with this currently. I usually take 10-12mg of hydrocortisone/ day in divided doses, most in the morning. But do not carve that in stone, as I may change my regimen tomorrow. It does seem to be helping some, at ~ 4 weeks out. I am also taking a small amount of T3, 7-10mcg/day. Dr. Peatfield has a pretty good book on this subject, thyroid and adrenal issues. It is called " The Great Thyroid Scandal " I recommend it. But, there is still a lot that is unknown. Btw, Rich's answer was worth printing out. Best, Zippy ----------------------------------------------------------------- > Is there anyone out there who knows about this subject? If your > cortisol tested normal on a n A.M cortrosyn test (done over an hour), > but on a previous Bicycle ergonometry test your cortisol went down > post exercise (vs. up), would cortisol be warranted. How do you know > what dose is efficacious, for how long, without supppressing the > adrenal axis? > > What about thyroid. Does using it if you haven't seen test results > that say your T3 or T4 is ot of range, is it worth trying. I > understand there may be a risk of osteoporosis and possibly other > things. > > Also, has anyone seen Dr. J. Teitlebaum? What protocol did you go > on? Did you go on Cortisol and/or thyroid even if your tests were > negative? Have you seen an improvement? Was your visit/experience > with the protocol positive. How did it work for you if you visited > him from out of state re: being able to reach him if needed? Did you > have a local Dr. follow the protocol with you? > > Please only respongf if you have good knowledge of this as I am > already confused based on what I have read thus far. > > Heartfelt Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 Rich wrote and excellent piece in response to the question of supplementing hydrocortisol. About the only thing I can add to this is that one needs first to address their allergies and use a stragedy to avoid this reaction before trying to supplement the adrenals. I wourking on the theory now that lossely goes something like this: Since cortisol serves as the brakes on the immune system, low adrenal output (for whatever reasons) sets up a hyperimmune condition whereby the PWC becomes allergic to many everyday chemicals and foods. These allergies mostly are known as late-stage response type allergies, not the instant type allergic reactions such as skin allergies and etc. There can be a delayed reaction in the lungs to air pollution and to exposure other than thru the gut, but the allergic reactions I'm looking at now are mainly reactions from ingested chemicals and foods and can be affected by things such as exercise and other factors making identifing them extremely difficult. The late-stage allergic response dumps a lot of histmine and other TOXIN iterlukens and other agents used by the immune system to kill invaders. An immune reaction can be extremely toxic to the body and make the person feel like hell warmed over. In fact, in my opinion, a great portion of the symptoms of CFS are not cause by any toxin or virus or bacteria in the body, but rather are caused by our immune system's own chemical battle staged against allergens. No one has ever described the way it feels to be overloaded with histamine, IL- 6, IL-9, and Tumor Necrosis Factor and etc. all at the same time, but my bet is that, if and when they do, they will describe something very familar to chronic fatigue syndrome. Anyway....in my opinion, the very first step in recovery from Chronic Fatigue Syndrome requires a super human effort to identify and avoid chemical and food sensitivities. Unless you avoid the agents that spark the immune response, you will not be able to gage any other recovery program that you try! Therefore, it is mandatory to first go on a strick rotation diet, keeping a detailed diary of what you injest and your activity level since your activity will change the allergic reaction going on inside. This rotation diet includes going off EVERYTHING you are now taking into your body, uincluding your favorite feel good drugs and vitamins. > > Is there anyone out there who knows about this subject? If your > > cortisol tested normal on a n A.M cortrosyn test (done over an > hour), > > but on a previous Bicycle ergonometry test your cortisol went down > > post exercise (vs. up), would cortisol be warranted. How do you > know > > what dose is efficacious, for how long, without supppressing the > > adrenal axis? > > > > What about thyroid. Does using it if you haven't seen test > results > > that say your T3 or T4 is ot of range, is it worth trying. I > > understand there may be a risk of osteoporosis and possibly other > > things. > > > > Also, has anyone seen Dr. J. Teitlebaum? What protocol did you go > > on? Did you go on Cortisol and/or thyroid even if your tests were > > negative? Have you seen an improvement? Was your > visit/experience > > with the protocol positive. How did it work for you if you > visited > > him from out of state re: being able to reach him if needed? Did > you > > have a local Dr. follow the protocol with you? > > > > Please only respongf if you have good knowledge of this as I am > > already confused based on what I have read thus far. > > > > Heartfelt Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 No one has > ever described the way it feels to be overloaded with histamine, IL- > 6, IL-9, and Tumor Necrosis Factor and etc. all at the same time, but > my bet is that, if and when they do, they will describe something > very familar to chronic fatigue syndrome. > > Anyway....in my opinion, the very first step in recovery from Chronic > Fatigue Syndrome requires a super human effort to identify and avoid > chemical and food sensitivities. Unless you avoid the agents that > spark the immune response, you will not be able to gage any other > recovery program that you try! Therefore, it is mandatory to first > go on a strick rotation diet, keeping a detailed diary of what you > injest and your activity level since your activity will change the > allergic reaction going on inside. This rotation diet includes going > off EVERYTHING you are now taking into your body, uincluding your > favorite feel good drugs and vitamins. ------------------------------------------ I will agree with Dave on some of this. Discovering what I was sensitive to was one of this biggest things I have ever done to feel better. However, I went through Herculean efforts to determine it, fasting many days. Others will hopefully be able to follow a milder, gentler course than I. Dr. Theron Randolph wrote a good book on this that might be helpful to some. I seemed to have misplaced this book. I hope I got that name right. Anyway, his program should be good for many people. Too, my genovations testing showed that I, like Carol Sieverling, was genetically encoded to over produce certain cytokines. TNF alpha is a biggy for me. Taking Beta 1,3 D Glucan, which is designed to raise TNF alpha, made me feel terrible I believe the future will reveal that many PWC's have problems like this. My pondering is over gene expression. What role do heavy metals, toxins, hypothyroidism, etc. play in gene expression, which would then encourage expression of CFS symptomolgy? Keep up the good work Dave Zippy btw, I think cancer patients, who have been given interlukens, really felt like crap from it, did they not? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2003 Report Share Posted September 26, 2003 All we have to do is get some brave volunteer to agree to be injected with hist, IL-6, IL-9 and TNF, and then not only will we know if your theory is correct, but also maybe get more respect from the mainstream medical community. ? Dave, do you know how long hydrocortisone is good for once you get a prescription? 2 years, 3 years, 10 years? Thanks, Mike c. Dave wrote (in part): No one has > ever described the way it feels to be overloaded with histamine, IL- > 6, IL-9, and Tumor Necrosis Factor and etc. all at the same time, but > my bet is that, if and when they do, they will describe something > very familar to chronic fatigue syndrome. Quote Link to comment Share on other sites More sharing options...
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