# interesting company doing research- for susan purry



## snoopy (Jun 24, 1999)

Hi Susan,As the moderator of this forum, I thought you might be interested in a Canadian company conducting research on a growth hormone in inducing deep sleep in patients that suffer from sleep disorders. I mention this because from what I have read about fibro, a major contributor to the problem is lack of deep sleep and low levels of growth hormone. I am in the process of being diagnosed as I strongly suspect my 'IBS' has turned into fibro now (my doctor suspects this to based on his trigger point tests). My blood tests came back showing extremely low levels of DHEA (the 'mother' of all hormones) and my sleep is constantly interrupted, so I am sure I don't get the deep sleep necessary. I also notice that when I do get a good night's sleep my hip/neck/shoulder pain is much much better and so is my IBS curiously. I think there is definitely a connection between lack of growth hormone and IBS/Fibro. If you are curious, please check out this company at www.theratech.com. I am investigating being involved in their clinical trial for 'sleep maintenance disorder'...but in the meantime my 'gut' (pun intended) tells me that I am on the right track here. By the way, I sent this company an e-mail asking if they are planning clinical trials on fibro/IBS patients too and I have not heard back from them yet. Let me know if you are interested and I will keep you informed on this one. Many thanks for all the work you do here to help others like myself! take care,Jane


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## Susan Purry (Nov 6, 2001)

Hi Jane/snoopy, thanks for posting this information on 'sleep maintenance insomnia'. It does look interesting. Lack of restorative sleep is thought to contribute to Fibromyalgia symptoms. Anyone (with or without an illness like Fibromyalgia) is going to experience symptoms such as pain, physical fatigue and impaired cognitive function if they don't get enough sleep, or sleep of the right quality. A study was done on this - some people were deprived of sleep and ended up getting symptoms common to Chronic Fatigue Syndrome. It is important for doctors to rule out, or diagnose and treat a sleep disorder, when considering a diagnosis of Fibromyalgia or CFS. Has your doctor done this? Just FYI, Fibromyalgia (and CFS) is associated with Irritable Bowel Syndrome. Many Fibro & CFS patients have IBS symptoms (rather than the other way round!). I forget the specific percentage.Best wishes,


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## snoopy (Jun 24, 1999)

Hi Susan,Funny you should mention that...I am going to my doctor tomorrow to get a referral to a sleep clinic for an overnighter to check on my sleep patterns. I know they are playing a role in my symptoms because when I do get a good nights sleep (which is rare for me), I don't have as much pain and my bowel symptoms are better as well. I am also borderline anemic, so my doc is checking my B-12 levels--so lack of deep sleep and B-12 and constant pain in my shoulders/neck/upper and lower back and hip area could definitely explain my unbelievable fatigue/dizzyness over the past 6 months. I started out having bowel problems (for the past 2 years), which have led to my pain/fatigue/dizzyness problems...so I think I am an IBS person who might have fibro now. I am also going to a rheumatologist to test for fibro, so I know for sure that that is what I am dealing with now. I am in a stressful job and have been working really hard over the last year. I work 4/5 days a week now, but really work more than full time when I think of all the hours I put in. I know this is not helping my health, but I am on my own after a recent divorce- so I don't have much choice but to support myself. I am hoping that if I can get my sleep and B-12 problems sorted out that that will help the pain and bowel problems. As for the company I mentioned, they are doing clinical trials using their growth hormone for people with insomnia- so I am trying to get included in the trial. They will have this product to market in Canada they hope in 2004. It has shown great results in phase II studies, with no side effects/grogginess the next day- so I think it shows great promise. I also had blood tests done recently which showed really low levels of DHEA (I am at the level of a 65 year old woman!), but normal cortisol levels. Not sure if this is normal for a fibro sufferer - do you know? I hope the rheumatologist can either rule fibro in or out where I am concerned. My doctor has also recommended I see an osteopath to help with my pain and possibly my DHEA levels. Do you have any experience with osteopaths? At the end of this I will have seen so many specialists that I will be totally worn out I am sure! Thanks Susan for your help to date and I appreciate your comments on some of the above. Take care, Jane


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## trbell (Nov 1, 2000)

deep sleep insufficiency seems to have some relation to cfs, ibs, fibro, depression, etc. but it's not clear how. the site you mentioned though, Susan, seems to be doing stem cell research, so I'm confused.tom


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## Susan Purry (Nov 6, 2001)

Tom, it was Jane who posted the link to the site.I seem to remember that the info on sleep maintenance insomnia is on the 'Press Release' section of the site. It was down when I tried to look at it just now though.Jane, I have seen an osteopath on and off for a number of years now. He works to get my cerebrospinal fluid moving about more. Initially I feel quite ill after a treatment from him - cold and more tired, but after a few days I pick up and feel better than before the treatment. That's what he does for the ME/CFS. He has helped out with joint problems too (they don't fit together too well - a legacy from being born prematurely before my body was fully developed!!)


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## Susan Purry (Nov 6, 2001)

Jane, DHEA is not something I know much about. I've been looking up some articles on its significance on CFS symptoms. Here are some links for you:*Dehydroepiandrosterone sulfate deficiency in chronic fatigue syndrome* http://www.cfs.inform.dk/HPA/dheas.txt


> quote:Herein, we show that the majority of Japanese patients with CFS had aserum dehydroepiandrosterone sulfate (DHEA-S) deficiency...DHEA-S has recently been shown to have physiological properties, suchas neurosteroids, which are associated with such psychophysiological phenomenaas memory, stress, anxiety, sleep and depression. Therefore, the deficiency ofDHEA-S might be related to the neuropsychiatric symptoms in patients with CFS


*Dehydroepiandrosterone (DHEA) response to i.v. ACTH in patients with chronicfatigue syndrome.* http://www.cfs.inform.dk/HPA/becker.txt


> quote:We found normal basal DHEA levels, but a blunted serum DHEA responsecurve to i.v. ACTH injection. This observation adds to the large amount ofevidence of endocrinological abnormalities in CFS. Relative glucocorticoiddeficiency might contribute to the overall clinical picture in CFS


*Male Menopause & Chronic Fatigue Syndrome* http://www.immunesupport.com/library/showarticle.cfm?ID=3250


> quoteHEA has anti-stress and immune strengthening properties along with the ability to improve sleep, mood and energy levels. Because of its contribution to vigor and vitality DHEA is sometimes called the fountain of youth...Dr. David Brownstein has written several books on natural hormone therapy. He has 'observed consistently low DHEA levels in most individuals with fibromyalgia and chronic fatigue syndrome.


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## snoopy (Jun 24, 1999)

Hi Susan,Thanks so much for the info. on DHEA....ok, if one has really low levels than how does one boost this? Would my doctor prescribe DHEA?? Also, I have an appointment to see a neurologist re: neurally mediated hypotension. Is this the best person to see re: tilt-table testing? What type of specialist did you see to address this?Many thanks for all your help!Jane


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## Susan Purry (Nov 6, 2001)

Hello again Jane. I'm so glad you are going to have the tilt-table test becuase if you do have Neurally Mediated Hypotension, you can be treated and some of your symptoms might improve.







You may have to try a couple of different treatments but you should get there in the end. A neurologist is fine to do the tilt-table test - any hospital consultant can do it really I believe. A rheumatologist did mine - a crude form of it anyway. He took my BP lying down, sitting up, and then whilst standing up for 4 minutes or so - long enough for it to become evident that I was on the verge of fainting. Kind man didn't actually make me faint!!! Ask your doctor if you can take the 24 hour urinary sodium test as well to see how much sodium you are excreting (sodium is needed to retain water and maintain blood volume and therefore pressure) - this may help your doctor make a diagnosis and may help her/him decided what medication to prescribe. Do you want some links to info on NMH? About the DHEA... I know 'natural' hormones are available to buy from health food stores and online etc - have a look at: http://www.ask.co.uk/reply.asp?ask=DHEA&or...1.x=30&askbutto n1.y=7[/URL] - but I seriously wouldn't go this route before thoroughly checking it out (and all other alternatives) with a medical doctor. When messing about with something so important as DHEA, it would be good if you were under the care of a doctor - just my personal opinion of course. DHEA is available as a medication - but I can't find any useful info about it though. Ask your doctor? Best wishes,


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## Susan Purry (Nov 6, 2001)

Jane, take a look at this thread if you haven't already seen it: http://www.ibsgroup.org/ubb/ultimatebb.php...ic&f=3&t=013899


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