Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Thanks for this link to Cheney's Dallas talk in 2002. Here is my take on his point - remember I have been taking growth hormone for 3 yrs. He is saying that if you give the dose of hGH that an endocrinologist would give to return growth horomone levels to normal it is going to work so well that the typical cfs or fms patient is going to get a bad reaction as the body starts to clear toxins. Indeed it is common for fms patients on growth hormone to experience severe increase in pain. But there is a simple solution - lower the dose. Hope this helps to clarify the risks for some. Of course, in my opinion, one should NEVER use growth hormone without careful testing and supervision from a knowledgable endocrinologist. I doubt I would even get this therapy from Cheney as an internist, even though I greatly respect him. For one thing, he couldn't get my insurance to cover it!!!! See Cheney quote below: a And even growth hormone, which may be the best detoxifier of them all, since it increases protein synthesis in the liver and improves liver detoxification, may actually produce a variety of toxic reactions, particularly at pharmacologic and possibly even physiologic doses. [A physiologic dose is an amount approximating what the body would produce under normal conditions. A pharmacological dose increases blood levels many times higher than they would normally be.] So you have to be really cautious with the doses of these detoxifiers, or you can really get into trouble. If you get into trouble, you just cut the dose in half, and usually you're out of trouble pretty quickly. You start the detoxifiers one at a time, and you go carefully. And some are worse than others [in terms of mobilization and toxic reactions]. MSM is probably the worst of the bunch. And growth hormone can be pretty bad if you take a physiologic dose. > a, > > Although I'm not a patient of Dr. Cheney, I have read a number of his > papers and transcripts of his speeches. The issue raise is a complex > one, perhaps best explain by Cheney himself. You should definitely > check out the Cheney transcript at this URL > http://members.cox.net/dsleffel/cheney/cheney_pres.html > > - don > > > > Thanks for this reply. My next question is similar to someone > else's, How > > does Cheney relate this to giving or not giving growth hormone? > Also how > > does one afford growth hormone without meeting the FDA criteria for > adult > > deficiency? I mean you can pay a lot for this stuff when you don't > need it > > or when it is bad for you. So I am wondering what Cheney is doing. > I respect > > him a lot, but so far this doesn't make sense to me. > > a > > > > > > > a, > > > It's a test by Great Smokies Diagnostic Labs called a > Comprehensive > > > Digestive Stool Analysis, which looks at my factors in the gut, > including > > > looking for yeasts, good bacteria, bad bacteria, and any other > bacteria > > > which shows up. They look at all the parameters that they test, > weight > > them > > > somehow, and come up with a severity of dysbiosis index. Since my > gut it a > > > mess, and I believe one of the reasons I have such a hard time > getting > > > anywhere, and like to grow bad bugs with little to no good bugs, > I get > > them > > > done frequently as I change probiotics, etc. Go to www.gsdl.com > and under > > GI > > > heading you will see a description of the CDSA. Oh, your doc > calls them > > and > > > I guess faxes them a script and they send you a kit which you > send back to > > > them when done. > > > Donna in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 a, Cheney was able to get my growth hormone covered by my insurance. We have done the bicycle ergometry test, and it showed my post exercise levels of growth hormone actually went down instead of up. Cheney wrote a letter, explained what it meant, and they cover me for a year at a time. It does come from the Pharmacia Bridge program, so even if it wasn't covered, the price is indeed affordable, but because my insurance picked it up, it cost me $12.00. And I do believe I'd see Cheney over an Endocrinologist any day, but I won't get into a discussion about that as it inevitably leads nowhere good. Donna in NC Cheney on hGH I doubt I would even get this therapy from Cheney as an internist, even though I greatly respect him. For one thing, he couldn't get my insurance to cover it!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Per the 9 month long study on hGH for CFS by Dr. , there was a reduction in symptoms in some participants. However, after regular hGH injections were halted at the end of the study, symptoms returned in all the participants, and for some the condition was made worse. One function of hGH is to assist in moving amino acids into cells where they are then used to build proteins. If you look at a nutritional analysis of people with CFS/FMS you will see that many are low in amino acids. Could it be that hGH production is lowered because amino acids levels are low? Or, maybe since blood glucose levels remain high for a longer period of time this may have a lowering affect on hGH output. Another function of hGH is to facilitate the burning of fat, to increase metabolism. Is it possible that over the years of signaling the cells to turn up the heat, hGH production becomes exhausted? The block to metabolism being at the mitochondria and not because hormones have not been signalling the cells. My thinking is that hGH production will return to normal when the health of the body is restored and that too much supplementation might cause the gland to atrophy to the point that it will not be able to produce the hormone. All the best, Jim > > > Thanks for this reply. My next question is similar to someone > > else's, How > > > does Cheney relate this to giving or not giving growth hormone? > > Also how > > > does one afford growth hormone without meeting the FDA criteria for > > adult > > > deficiency? I mean you can pay a lot for this stuff when you don't > > need it > > > or when it is bad for you. So I am wondering what Cheney is doing. > > I respect > > > him a lot, but so far this doesn't make sense to me. > > > a > > > > > > > > > > a, > > > > It's a test by Great Smokies Diagnostic Labs called a > > Comprehensive > > > > Digestive Stool Analysis, which looks at my factors in the gut, > > including > > > > looking for yeasts, good bacteria, bad bacteria, and any other > > bacteria > > > > which shows up. They look at all the parameters that they test, > > weight > > > them > > > > somehow, and come up with a severity of dysbiosis index. Since my > > gut it a > > > > mess, and I believe one of the reasons I have such a hard time > > getting > > > > anywhere, and like to grow bad bugs with little to no good bugs, > > I get > > > them > > > > done frequently as I change probiotics, etc. Go to www.gsdl.com > > and under > > > GI > > > > heading you will see a description of the CDSA. Oh, your doc > > calls them > > > and > > > > I guess faxes them a script and they send you a kit which you > > send back to > > > > them when done. > > > > Donna in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 I would caution anyone against thinking " lowering the dose " of growth hormone will offset any negative reactions. About a year and a half ago, I tried the growth hormone shots at .1 mg once a week, trying to work up to Cheney's .2 mg once a week, and had a severely adverse reaction from that tiny dose. Then I scaled down to a quarter of a .2 syringe, and still had a negative reaction, then stopped and crashed for three months. I thought at the time (since it was early in Cheney's use of this treatment, my local doctor was administering it, and I was basing my actions of the experiences of those on this list), that I just needed to take more immune modulating substances (I had taken Isoprinosine, pine cone extract, and transfer factors for three months prior to starting) before trying again. So I balanced my immune system again, then re-started the treatment, adding the growth factors after the first month of starting again. I was never able to inject more than .05 mg/week of the growth hormone without crashing, except toward the end when I got back up to .1 mg/week, but even at this low dose, I continued declining until I quit the treatment after five months. Overall, I was not helped, and I'm now convinced my RNase-L must be too dysregulated for a positive result, as this is what at least one Cheney patient has suggested. I had planned to see Cheney this past January, to sort some of these issues out, but was unable to have the appointment. So why I had a negative response to the treatment remains a mystery, but there are certainly some of us who have had adverse reactions to even very small doses of HGH, even after following Cheney's immune modulating suggestions. Peggy ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome: http://www.angelfire.com/ri/strickenbk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Donna, sounds good to me, and sounds like cheney is right on target as good as any endo. Glad to hear this. I know Cheney recommends a very low dose of growth hormone. My endocrinologist would not agree that low dose is correct for all, but would base the dose on the IGF-1 response. As to Bridge being cheap, it is only cheap because your dose is low. I started at 0.8 and it cost $1000 a month, now at 0.4 it costs $500 a month. Cheap is relative. a > a, Cheney was able to get my growth hormone covered by my insurance. We > have done the bicycle ergometry test, and it showed my post exercise levels > of growth hormone actually went down instead of up. Cheney wrote a letter, > explained what it meant, and they cover me for a year at a time. It does > come from the Pharmacia Bridge program, so even if it wasn't covered, the > price is indeed affordable, but because my insurance picked it up, it cost > me $12.00. And I do believe I'd see Cheney over an Endocrinologist any day, > but I won't get into a discussion about that as it inevitably leads nowhere > good. > Donna in NC > > Cheney on hGH > > > I doubt I would even get this therapy from Cheney as an internist, even > though I greatly respect him. For one thing, he couldn't get my insurance to > cover it!!!! > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Jim, I am too lazy to hunt down the research, but there is no indication that the pituitary function atrophies. Instead it heals and generally one's dose is able to be lowered. But I would NEVER suggest growth hormone fixes any disease, any more than thyroid supplements fix thyroid problems. It is just simply that if your body is not producing optimal amounts you can supplement them. I also have found, but have no research on this, that when I started taking ImmunePro which probably boosts glutathione levels I was able to lower my growth horomone dose by half. I think Rich can comment on this. a > > Per the 9 month long study on hGH for CFS by Dr. , there was a > reduction in symptoms in some participants. However, after regular > hGH injections were halted at the end of the study, symptoms returned > in all the participants, and for some the condition was made worse. > > One function of hGH is to assist in moving amino acids into cells > where they are then used to build proteins. If you look at a > nutritional analysis of people with CFS/FMS you will see that many > are low in amino acids. Could it be that hGH production is lowered > because amino acids levels are low? Or, maybe since blood glucose > levels remain high for a longer period of time this may have a > lowering affect on hGH output. > > Another function of hGH is to facilitate the burning of fat, to > increase metabolism. Is it possible that over the years of signaling > the cells to turn up the heat, hGH production becomes exhausted? > The block to metabolism being at the mitochondria and not because > hormones have not been signalling the cells. > > My thinking is that hGH production will return to normal when the > health of the body is restored and that too much supplementation > might cause the gland to atrophy to the point that it will not be > able to produce the hormone. > > All the best, > Jim > > > > > > > Thanks for this reply. My next question is similar to someone > > > else's, How > > > > does Cheney relate this to giving or not giving growth hormone? > > > Also how > > > > does one afford growth hormone without meeting the FDA criteria > for > > > adult > > > > deficiency? I mean you can pay a lot for this stuff when you > don't > > > need it > > > > or when it is bad for you. So I am wondering what Cheney is > doing. > > > I respect > > > > him a lot, but so far this doesn't make sense to me. > > > > a > > > > > > > > > > > > > a, > > > > > It's a test by Great Smokies Diagnostic Labs called a > > > Comprehensive > > > > > Digestive Stool Analysis, which looks at my factors in the > gut, > > > including > > > > > looking for yeasts, good bacteria, bad bacteria, and any other > > > bacteria > > > > > which shows up. They look at all the parameters that they > test, > > > weight > > > > them > > > > > somehow, and come up with a severity of dysbiosis index. > Since my > > > gut it a > > > > > mess, and I believe one of the reasons I have such a hard time > > > getting > > > > > anywhere, and like to grow bad bugs with little to no good > bugs, > > > I get > > > > them > > > > > done frequently as I change probiotics, etc. Go to > www.gsdl.com > > > and under > > > > GI > > > > > heading you will see a description of the CDSA. Oh, your doc > > > calls them > > > > and > > > > > I guess faxes them a script and they send you a kit which you > > > send back to > > > > > them when done. > > > > > Donna in NC > > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Hi Donna. Is the 'bicycle ergometry test' a standard medical test for Hgh (or any other possible disorder) and is there anywhere I can read about it. Would it be something that someone would use for a disability claim? Thanks. Mike C. > a, Cheney was able to get my growth hormone covered by my insurance. We > have done the bicycle ergometry test, and it showed my post exercise levels > of growth hormone actually went down instead of up.<<snip<<< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 a, you're right, cheap is relative. I am fortunate that I can get 3 months' worth of a prescription (no matter what the dose - meaning even your dose would be the same price for me) for either $35 or $10 (brand name or generic being the price differential) by using the mail order pharmacy that my insurance carrier has contracted with. There are some exceptions, such as controlled substances, for which you can only get one month's supply at a time, but the HGH is not one of them. Donna in NC Re: Cheney on hGH .. As to Bridge being cheap, it is only cheap because your dose is low. I started at 0.8 and it cost $1000 a month, now at 0.4 it costs $500 a month. Cheap is relative. > a > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Mike, I'm not sure how standard it is, as the equipment is very expensive, and insurance companies would prefer the less expensive ITT test, so Cheney isn't sure if they will continue to pay, but so far I don't know that he's had problems. My insurance company pays for it. I went to Cheney precisely because I needed help with disability (Soc Sec). He did the bike ergometry test, and sent me to Myra Preston for a functional EEG and disability was granted w/o my even needing to testify, even though they swore me in, etc. The doctor, a British psychiatrist told the judge that with these two tests he had to find for disability and didn't need to question me at all. I don't know if there is anything on the 'net, as I haven't looked for it, but I would think you could find something. I'll see if I have anything in my stuff. Donna in NC Re: Cheney on hGH > Hi Donna. Is the 'bicycle ergometry test' a standard medical test for Hgh (or any other possible disorder) and is there anywhere I can read about it. Would it be something that someone would use for a disability claim? Thanks. > > Mike C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Donna wrote: and insurance companies would prefer the less expensive ITT test, so Cheney isn't sure if they will continue to pay, but so far I don't know that he's had problems. PJ asks: What is an ITT test? Thanks, a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 a, ITT stands for " Insulin Tolerance Test. " They take a blood sample and analyze it for glucose level and for growth hormone. Then they give you a shot of insulin, which pushes you into hypoglycemia. This should cause a surge of adrenaline and a rise in growth hormone output. They take more blood samples over time to make sure they have achieved hypoglycemia, and also to measure growth hormone. I'm told that this is not always a lot of fun to go through, but it's cheaper than the bike test (which I'm told is also not fun if you are a PWC). It's unfortunate that the most definitive tests for proving that a PWC is disabled have to be so unpleasant. The tilt table test for NMH is another test that is brutal for many PWCs to have to endure. Rich > and insurance companies would prefer the less expensive ITT test, so Cheney > isn't sure if they will continue to pay, but so far I don't know that he's > had problems. > > PJ asks: > What is an ITT test? > Thanks, > a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Thanks, I am actually familiar with all of this but just didn't recognize ITT, etc. When I initially got tested for growth hormone deficiency I walked a tread mill for 30 minutes and had heart rate and blood pressure checked at that point to be sure I had walked fast enough. I would not have wanted to do the ITT test. Indeed, my excellent endo located in Charlotte, NC does not use that test. He did not charge me extra money to walk a treadmill, and he accepts Medicare. The whole point of this testing is: 1. to determine if your pituitary is producing growth hormone when you exercise as a healthy person would. 2. to get a test done which your health insurance will accept as an accurate diagnosis. I currently have another excellent endocrinologist here in Las Vegas who knows what he is doing with adult growth hormone deficiency. Neither endo knows squat about cfs, but they know endocrinology. That is why I recommend that anyone who wants to be tested for this call around to your city's endocrinologists and ask, " Do you treat ADULTS with growth hormone deficiencies? " a > a, > > ITT stands for " Insulin Tolerance Test. " They take a blood sample > and analyze it for glucose level and for growth hormone. Then they > give you a shot of insulin, which pushes you into hypoglycemia. > This should cause a surge of adrenaline and a rise in growth hormone > output. They take more blood samples over time to make sure they > have achieved hypoglycemia, and also to measure growth hormone. I'm > told that this is not always a lot of fun to go through, but it's > cheaper than the bike test (which I'm told is also not fun if you > are a PWC). It's unfortunate that the most definitive tests for > proving that a PWC is disabled have to be so unpleasant. The tilt > table test for NMH is another test that is brutal for many PWCs to > have to endure. > > Rich > > > > and insurance companies would prefer the less expensive ITT test, > so Cheney > > isn't sure if they will continue to pay, but so far I don't know > that he's > > had problems. > > > > PJ asks: > > What is an ITT test? > > Thanks, > > a Quote Link to comment Share on other sites More sharing options...
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