Re: Re: rejoining the group after several years

[Guest guest]

I've been using melatonin (1mg) recently at night to help me sleep. I don't think I've noticed any particular worsening of Samter's symptoms. Also if the breakdown of melatonin is to a chemical related to aspirin, that shouldn't be a problem for someone who has been desensitized. On Feb 24, 2010, at 3:46 PM, asfy wrote:

Hello ine,Thank you for all this contribution. You raise the interesting topic of melatonin. I too have read the abstracts and the one paper this russian doctor wrote in English, but I must say that I have not been able to find any supporting sources for some of the claims that are laid, and not developed. The other papers written by this doctor or colleagues are in russian and therefore not easily accessible. I do not mean by this that all of this theory is bad or wrong, but just that I could not find independent research that would confirm it. Notably, I could not confirm that melatonin yields metabolites that are similar to aspirin, but I may not have researched enough. Papers on Samter's by american or european allergy specialists do not address this theory, so we do not know what they really think about it, but they apparently are not pursuing the same research paths.Regarding melatonin, this is not to mean that there is no usefulness in studying it in the context of Samter's, quite on the contrary, but I not sure about what to think of the several claims that are laid down in this paper by Dr. Evsyukova. I would tend to believe, based on what I have read, that melatonin may have some usefulness in AERD by improving the immunological aspect of the condition, but this is a matter that needs discussion in itself.I might add that, at this point, one should be wary of the claim by Dr. Evsyukova that some pineal gland extract marketed as "epifamin" or "epithalamin" cures AERD. First, no one knows what this "epithalamin" really is because it is only a brand name. Second, if it really is a pineal gland extract, where do they take it from ? Does it come from human (cadaver) or animal brains ? How is it purified to get rid of viruses, bacteria, prions, etc ? And even if it were synthetic, I would be very cautious because it is probably a hormone or contains hormones, and taking unknown hormones of uncontrolled origin is a highly dangerous thing to do. Please do not mistake me : I'd really like to know that something cures AERD, but I would first like to see how it performs in a clinical trial and begin to understand what it is and how it works before taking it myself. When some faraway doctor says it's an unknown brain extract (or possibly synthetic analogue) and that we have to take her word for its efficacy, I don't feel ashamed of being scared off.That being said, the whole avenue of melatonin, cortisol, brain interactions with immunity, etc that you mention is a very interesting one and what you say about migraine medication really needs to be researched and discussed in more detail because these obviously are things that have influence on Samter's. The whole issue of sleep is very interesting in itself ; for instance, the University of Lubeck in Germany has written a paper implying that going to sleep early is beneficial to the immune system of the Samter's patient (biaises the immunity more towards Th1, whereas Samter's is a Th2 disease). So, please feel free to share your research and experience on this subject with us.>> Hello everyone. I was a keen member of this group around 2000. I now have 4 children and am teaching science part time so i have been kept much too busy!However, i feel my condition is worsening and wonder if the fluctuation in hormones with pregnancy and breast feeding has heped to keep my symtoms on an evenish keel. I have been prompted to look up the group again to retrieve 2 papers i posted and have since mislaid. (Ken i see you have transferred them with the updating of the web format thank you so much -the one on melatonin and the oneon aspirin and asthma ). I also want to let the group know where i am with things. I have a science background and tortured myself for about a year reading all papers i could find in medical journals on samters and related topics. The most promising info i could find was written by a russian doctor from pavlov medical university (she is described in her job profile as 'a doctor of no higher order'). she believes that she knows the cause of our problem. Melatonin is a hormone in our body that controls our body clock (it is responsible for lots of things but i will keep it simle).as the day progresses and it gets darker, more and more melatonin is produced until there is enough to allow us to sleep. as morning arrives the light slows melatonin production until levels are low enough to allow us to wake. people with samters triad produce far too little melatonin (genetic cause probably triggerred by viral infection). Because we need our body clock to work, our bodies have had to become extremely sensitive to melatonin and all related chemicals. have you ever wondered why your symtoms of rhinitis etc are so much worse in the morning? our bodies slow down at night and most chemical reactions slow down. In the morning the night time melatonin has to be broken down.Cortisol gets our body to rev back up to speed and breakdown of melatonin rapidly proceeds. melatonin breaks down to a chemical very similar to aspirin. this is what causes the morning symptoms. we cannot avoid melatonin or its breakdown therefore we cannot escape the symptoms. if we ingest melatonin to raise our low levels it will break down to the aspirin chemical with disastrous effects. there is a medicine available which has undergone testing for about 20 years which normalises the melatonin (and related chemicals) production in the pineal gland. the idea then is that our bodies stop this unnatural sensitivity they have built up. The medicine is called epithalamin. it has been used to treat many disorders all stating no side effects. to the contrary it is supposed to extend life and prevent cancers to a certain extent (probably because melatonin mops up free radicals that cause tissue damage associated with aging and cancers). the russian doctor has written many papers related to this and her preliminary trials testing this drug on patients with samters have been favourable. as far as i know she is undergoing further larger scale trials. i am taking what evidence i have to my gp on fri to ask to see a consultant endocrinologist with a view to asking for this drug which is quite expensive (£69 for 10 days supply). there are various other bits of evidence in papers and pertaining to me personall that i will be using. E.g Amitriptylline is a tricyclic anti depressent which i was given to try to stop migraines. it almost completely stopped my sampters symptoms (i caould even smell) for a period of a few months. with the help of my doctor i tried lots of other anti depressents to try to replicate the results to no avail. i stumbled across a paper a few days age about trying to reproduce normal sleep patterns in the elderly using 'melatonin and amitryptilline the inductor of its synthesis' and also anothjer paper stating that the pineal gland becomes desensitised to prolonged use of amitriptylline and no longer produces elevated melatonin levels. Even the fact that i have migraines could be linked. I was just starting to add another whole ream of the info that is running around in my head relating to this but it is probably info overload. let me know what you think. thanks for reading . pauline>

[Guest guest]

It's really a shame when potentially valid criticism is so overwhelmingly obscured and even negated by rudeness.

(space)

Maybe that was actually spam that leaked in ?

From: <rebeebit@...>samters Sent: Wed, February 24, 2010 10:13:45 PMSubject: Re: rejoining the group after several years

Or so acerbically?> > . . . snipping a long, single, run-on, overly long paragraph, with no spaces> > before sentences, careless capitalization, and a generally casual attitude> > towards the comfort of the reader.> >> > > >> let me know what you think.> >> > >> > I think that I must be old fashioned to believe that as a reader I should be> > entitled to text which is formatted in a friendly way.> >> > > >> thanks for reading

..> >> > >> > You're welcome, but, I didn't. I couldn't.> > Your content, for me, was obscured by the lack of formatting.> >> > > >> pauline > >> > >> > Seriously, I hope that you help your science students write reports which> > show their readers more consideration.> >> >> >> >> > ------------ --------- --------- ------> >> >

[Guest guest]

Me too.

wrote:

> I apologize.

>

>

>>>

>>>> . . . snipping a long, single, run-on, overly long paragraph, with no

spaces

>>>> before sentences, careless capitalization, and a generally casual attitude

>>>> towards the comfort of the reader.

>>>>

>>>>

>>>>

>>>>> let me know what you think.

>>>>>

>>>>>

>>>> I think that I must be old fashioned to believe that as a reader I should

be

>>>> entitled to text which is formatted in a friendly way.

>>>>

>>>>

>>>>

>>>>> thanks for reading .

>>>>>

>>>>>

>>>> You're welcome, but, I didn't. I couldn't.

>>>> Your content, for me, was obscured by the lack of formatting.

>>>>

>>>>

>>>>

>>>>> pauline

>>>>>

>>>>>

>>>> Seriously, I hope that you help your science students write reports which

>>>> show their readers more consideration.

>>>>

>>>>

>>>>

>>>>

>>>> ------------ --------- --------- ------

>>>>

>>>>

[Guest guest]

Hi ,

I'm sorry that my somewhat vague and cynical response - which was intended to be a comment on what I believe to have been a rude response by Ken to ine's post -was inadvertently attached as a response to your post instead of Ken's. It was his comment that I meant to refer to -not yours.

I think his comments were more than acerbic and inappropriate in any reasonable dialog -regardless of any technical validity.

My sincere apologies to you, .

(Now I'll go back to my lurking mode on what continues to be a most valuable forum that I continue to benefit from)

From: <rebeebit@...>samters Sent: Thu, February 25, 2010 1:24:04 PMSubject: Re: rejoining the group after several years

I apologize.> > > . . . snipping a long, single, run-on, overly long paragraph, with no spaces> > > before sentences, careless capitalization, and a generally casual attitude> > > towards the comfort of the reader.> > >> > > > > >> let me know what you think.> > >> > > >> > > I think that I must be old fashioned to believe that as a reader I should be> > > entitled to text which is formatted in a friendly way.> > >> > > > > >> thanks for reading .> > >> > > >> > > You're welcome, but, I didn't. I couldn't.> >

> Your content, for me, was obscured by the lack of formatting.> > >> > > > > >> pauline > > >> > > >> > > Seriously, I hope that you help your science students write reports which> > > show their readers more consideration.> > >> > >> > >> > >> > > ------------ --------- --------- ------> > >> > >

[Guest Glenn J. Hill]

Hi Pauline

I have read the Professor`s latest paper from 2011, and her one form 2002, and in the newer 2011 paper she tested a group of ASA patients and a group of people who were on no medication at all, and found that the ASA patients were consistently much lower in their daytime MT production. This may be a key to understanding the many effects that seem to occur in our systems due to this condition. and I am wondering if rather than taking the Peptide preparations, what about taking very very low dose, 8-hour time release Melatonin to act as "Replacement Hormone Therapy". So that perhaps it could be this simple, to try to add in the replacement for the low daytime levels of Melatonin that seem to act as regulators for many systems in our bodies?

Please email me with any thoughts on this idea. It sounds like you have really read up a lot on the condition we both have. I have been on Aspirin therapy 650mg to 1300mg daily , since 2003. I also take singular daily and use the usual preventive inhalers, with currently good control.