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Having a hard time of this!!   Message List  
Reply | Forward Message #3955 of 4133 |
My stories are the same as past and I understand the ups and downs.
However it is so hard when everything goes back to ZERO ! ! Its like
the forbidden fruit of life. I was having sucesses of periodic
sniffs of this and that and 1 or 2 days (not together) of 50 percent
on some foods, which never make sense/rhyme or reason, either
gradually tapering off or suddenly gone! As most of you know I have
been to Dr Henkin and am prescribed 100mg of theophenillin (?), theo
24 twice a day with breakfast and lunch. Nasel rinses in the am and
pm , gently inhaling from the palm of my hand into each nostril with
8oz of water and a measure 1/4 teaspoon of salt (for the perfect
saline mixture) and do intermittedly whenever during the day. I did
have some lessor sucesses before my trip to D.C. Spicy foods were my
salvation untill last week when I went to 0/0 (0 taste 0 smell)
again!! I have used my steroid spray with limitations as Dr Henkin
mentioned that they will work but not necessarily as a permenant
repair (healing). The very cold air outside, I am in the Northeast
US 180 miles south of Montreal, seems to have a benificial influance
when it comes to breathing, and yes I long for a breath of fresh
mountain air as it all is the same to me now.
I have a telcon with Dr. Henkin scheduled next week for my second
contact with him since my Sept appointment. The one thing I am sure
he can not help with are these sudden outbreaks of demise.

Harry




Fri Dec 5, 2008 3:55 pm

harryony1
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Message #3955 of 4133 |
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My stories are the same as past and I understand the ups and downs. However it is so hard when everything goes back to ZERO ! ! Its like the forbidden fruit...
harryony1
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Dec 5, 2008
3:55 pm

Harry In my case there is no question that my recovery was not linear. I had those dreadful bouts where I thought it had all gone away. It was hard to deal...
O'Hare, Mick (RBI-UK)
Mick.O'Hare@...
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Dec 5, 2008
4:14 pm

Mick et el, I think the hardest part is those who surround me claim they understand, but continue to be belligerent in there actions and statements. Although I...
harryony1
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Dec 5, 2008
6:21 pm

That's always been hard for me too. People just can't seem to understand... eventually it just sort of sinks in and you develop a thick skin for it. My...
Adam Frey
permeant1
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Dec 9, 2008
3:57 am

Hi Harry Agreed! M...
O'Hare, Mick (RBI-UK)
Mick.O'Hare@...
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Dec 9, 2008
9:21 am

Thanks Adam, you too Mick. My biggest issue is I just can't develop that "thick skin" but on the brighter side, I am up 95 per cent of the time! Would you...
harryony1
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Dec 10, 2008
7:10 pm

Good news Harry, let us know how the chat with Dr Henkin goes. Mick...
O'Hare, Mick (RBI-UK)
Mick.O'Hare@...
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Dec 11, 2008
10:17 am

Hi guys, just thought I'd weigh in with my reaction to Harry's predicament. I know exactly how you feel mate, you and I have a very similar story. I have...
R Overall
the_roozda
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Dec 15, 2008
10:58 am

Richard I am curious to know why you would stop the theo? and what percentage of taste/smell do you believe you have with using the med and not using the...
harryony1
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Dec 15, 2008
3:10 pm

Harry, I stopped the theo to see if I could live without taking drugs and still smell at an acceptable level. I don't know about you, but I'd much rather live...
R Overall
the_roozda
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Dec 17, 2008
4:47 am

Richard, I am banking that it is the constant barrage that eventually will squelch the, what ever it is, from getting back up and covering my olfactory. I...
harryony1
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Dec 17, 2008
12:51 pm

Yep Harry, I totally understand. And don't get me wrong, I'm not saying Theo is bad. I mean, it helped me tremendously I believe. The only reason I have ...
R Overall
the_roozda
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Dec 21, 2008
6:48 am

Richard, Were you a patient of Dr. Henkin? You have stopped the med because it has helped you in 2 years or you have given up after taking it for two years...
harryony1
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Dec 23, 2008
12:37 pm

yes i was a patient of Dr H. I believe it did help me. I stopped because I got to the point where i didn't feel i was improving, so I wanted to see if it would...
R Overall
the_roozda
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Dec 26, 2008
10:57 am

Ok, till then and best of success (tasting). In conjuction I still do nasel rinses and take nasonex which apparently helps with the process. Harry ... where i...
harryony1
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Dec 26, 2008
11:11 pm

Dr. Henkin.... It was a short sweet and too the point telephone call focused on any side effects of theo !! Increased dosage to 300mg for a couple of weeks...
harryony1
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Dec 15, 2008
3:05 pm

Sounds like the conversations I had with him too. The non-linear nature is frustrating isn't it? But it's how it was for me, if it's any consolation. Mick...
O'Hare, Mick (RBI-UK)
Mick.O'Hare@...
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Dec 16, 2008
10:28 am

Well it is a consolation!! It is always a positive to know that your system is reacting in such a manner of someone who has had success while being treated by...
harryony1
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Dec 16, 2008
1:00 pm

The good thing about theophylline is that it is cheap and well documented, it's been in use for decades so its side-effects are known. Stick with it Harry. M...
O'Hare, Mick (RBI-UK)
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Dec 16, 2008
1:06 pm

tks Mick. Next report after Feb 09 visit. Unless the roses come first!! Harry ... documented, it's been in use for decades so its side-effects are known. ......
harryony1
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Dec 16, 2008
1:30 pm

Harry, I had a period of time where I felt like I was imagining being able to taste/smell something, then being absolutely sure I was, then I couldn't...
Franni
franni_nm
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Dec 31, 2008
7:02 pm

Thanks Franni Up to 200mg of theophylline twice daily now and have been cheating on the rinsing proceedure that the Doc recommended... I have gone back to the...
harryony1
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Dec 31, 2008
8:28 pm
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