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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 29. This is the beginning of the thread.
Posted by Phillipa on August 14, 2005, at 12:10:23
Hey guys, I know I'm a very frustrating person. And according to my doctors a very complicated person due to existing medical conditions like elevated ANA. I've tried all the popular AD's and antianxiety meds and at first the benzos worked and now they don't. I've gone to various pdocs and even put myself into the hospital in hopes of I guess a miracle but no change. Things keep getting worse. I used to be such a high achiever, and the best psych RN but now I'm afraid to be alone in the house or go out by myself. My husband has had it and I have too. Even if you don't believe it I have no Taste or Smell. Went to DC to a specialist, one of only in world and he wants to try Theophylline. I'm scared. Does anyone know how this feels? Think of putting a food you like in your mouth and nothing. I used to be so out going. Now I'm to scared to do a thing. Anyone have any ideas? Now we may have to move to Florida for my husband to get a job? I need to get help now or I'll never make it. So Please help if you can. I try to excercise and sit still but I can't. Too scared of what? I don't know. Don't say get a new pdoc I think I've been to all of them in the area. And when you go to a specialist with a medical problem they say depression and anxiety isn't my specialty.Fondly, Phillipa
Posted by kerria on August 14, 2005, at 13:44:27
In reply to Whatever Happened To Me?, posted by Phillipa on August 14, 2005, at 12:10:23
(((((((Phillipa))))))))safe hugs if ok.
i'm so sorry . i know that it hurts so much to face the frustration of no one now to help such serious problems when you've never had them before.
i hope that somehow you can hold on until an answer that works comes. Everyday must be so difficult. Yet you always find the caring inside to say words to help others here.
i'm sorry that you're suffering so much, Phillipa.
kerria
Posted by ClearSkies on August 14, 2005, at 15:09:40
In reply to Whatever Happened To Me?, posted by Phillipa on August 14, 2005, at 12:10:23
Well, you know if you move to Florida that you have Real Life Support in me. If that isn't enough to depress you, you could ask you GP if she/he knows of any p-docs who specialize in your ailments. I have had some good leads with therapists from my p-docs. Plus I do use my insurance benefits for all the help they are capable of - which is not much, but you know, I keep on trying, and I have found good care by being diligent in my search for the correct treatment.
I think it is important to remember that just because you are under someone's care whose specialty does not include your complaint Does Not Make You the disappointment - rather, it's a reflection that your health care provider has not been able to to take take care of your needs!! Please remember, this HAPPENED to you - you did not go out and purchase mental illness and consume it, expecting it to be treated with an antitidote.
Please email, Philipa, if you need more support - I am here for you in many ways, okay??
ClearSkies
Posted by ed_uk on August 14, 2005, at 16:14:46
In reply to Whatever Happened To Me?, posted by Phillipa on August 14, 2005, at 12:10:23
Dear PJ,
((((((PJ))))))
>I've tried all the popular AD's and antianxiety meds and at first the benzos worked and now they don't.
I honestly think that meds might not be the answer. I think you need to see a good therapist in addition to your pdoc. What do you think?
Ed xxxx
Posted by john berk on August 14, 2005, at 16:38:49
In reply to Whatever Happened To Me?, posted by Phillipa on August 14, 2005, at 12:10:23
hi phillipa, i feel terrible knowing you are struggling so!! you were the first to welcome me here and encouraged me to post more often.
i can't even imagine not having taste or smell, it is like insult to injury for an already depressed person. you deserve an answer, i can't for the life of me understand the medical establishment and their blase' attitude!! my mom had a rare skin condition 3 years ago, and they didn't know how to deal with it, so they pumped her full of steriods, now she has extrewme bone loss, [steriod induced] and needs a knee replacement, it is outrageous!!
my family doctor actually laughed when i spoke to him initally about my mom, here were his exact words,-"your mom has some funky skin condition i never heard of"!! i swear, he even asked me to do a search and email him info if i had time, obviously, he didn't!! she finally found a specialist!!
phillipa, i am always here for you, i will pray hard you find strength and a med to help you!! when i had extreme anxiety, and trouble leaving the house, klonopin really helped, big time!! could you give that a try , [or if you have, maybe a higher dose]!! i'll talk to you soon, your friend...john
Posted by ed_uk on August 14, 2005, at 16:52:03
In reply to Whatever Happened To Me?, posted by Phillipa on August 14, 2005, at 12:10:23
Dear PJ,
Have you taken you first dose of theophylline?
Love ed xxx
Posted by ed_uk on August 14, 2005, at 16:53:15
In reply to Re: Whatever Happened To Me? » Phillipa, posted by john berk on August 14, 2005, at 16:38:49
What a kind post John :-) Thank you for supporting Phillipa. She's one of the nicest people on babble!
Kind regards
~ed
Posted by mogger on August 14, 2005, at 17:15:28
In reply to Re: Whatever Happened To Me? » Phillipa, posted by kerria on August 14, 2005, at 13:44:27
Phillipa,
I am so sorry for your suffering, you are such a trooper. I always look for your input on psycho-babble as you are so knowledgeable and caring. Please hang in there, the day will come when you find something that fits. Something will fit, you have to trust that,
mogger
Posted by Nixon on August 14, 2005, at 17:23:35
In reply to Whatever Happened To Me?, posted by Phillipa on August 14, 2005, at 12:10:23
> Hey guys, I know I'm a very frustrating person. And according to my doctors a very complicated person due to existing medical conditions like elevated ANA. I've tried all the popular AD's and antianxiety meds and at first the benzos worked and now they don't. I've gone to various pdocs and even put myself into the hospital in hopes of I guess a miracle but no change. Things keep getting worse. I used to be such a high achiever, and the best psych RN but now I'm afraid to be alone in the house or go out by myself. My husband has had it and I have too. Even if you don't believe it I have no Taste or Smell. Went to DC to a specialist, one of only in world and he wants to try Theophylline. I'm scared. Does anyone know how this feels? Think of putting a food you like in your mouth and nothing. I used to be so out going. Now I'm to scared to do a thing. Anyone have any ideas? Now we may have to move to Florida for my husband to get a job? I need to get help now or I'll never make it. So Please help if you can. I try to excercise and sit still but I can't. Too scared of what? I don't know. Don't say get a new pdoc I think I've been to all of them in the area. And when you go to a specialist with a medical problem they say depression and anxiety isn't my specialty.Fondly, Phillipa
Sounds like temporal lobe issues and if you are not on an AED that would be my suggestion. If you are that nervous I would go with Depakote. It sounds like you have some rapid cycling and mania issues. Good Luck
Posted by Maximus on August 14, 2005, at 17:25:59
In reply to Whatever Happened To Me?, posted by Phillipa on August 14, 2005, at 12:10:23
Personally i would look for another pdoc. Sometimes it is a slight personality disorder. A small dose of an atypical antipsychotic might be magic. It's just a thought. Anyway Jan, as you seem to be stuck in that pattern for a long time, i would certainly seek help with another doctor.
Posted by Sarah T. on August 14, 2005, at 17:43:39
In reply to Whatever Happened To Me?, posted by Phillipa on August 14, 2005, at 12:10:23
Hi Phillippa,
I am so sorry to hear what a difficult time you have been going through. I had no idea you were struggling so because you are always so kind and helpful to others.
How long have these problems been going on?
You mentioned an elevated ANA. Is it very highly elevated or just a bit? Have you had a repeat ANA test? Did you have any other lab values out of the normal range?
How long has it been since you lost your sense of taste and smell? Are they completely gone or are those senses just drastically numbed right now? Did your taste and smell disappear suddenly or was it a gradual process?
It sounds as if you live in the DC area. Have you seen any specialists in other major cities? I wonder whether a place like the Mayo Clinic could help you. I think you'd probably have to be an inpatient there for a while, and you'd have a team of doctors from different specialties evaluating you. Since it appears as if you are having difficulties in multiple organ systems, the Mayo Clinic, or a place like it, might be of great help.
Have you seen a neurologist and a rheumatologist?
Have you had any brain scans, MRI's, CT scans, PET scans or SPECT scans? If so, did they shed any light on what's going on?
Please continue to let us know how you're doing. I wish I knew a doctor in your area who could help you.
Posted by Phillipa on August 14, 2005, at 18:15:15
In reply to Re: Whatever Happened To Me? » Phillipa, posted by Sarah T. on August 14, 2005, at 17:43:39
Hi Ed, I guess you do keep up with your Babbles and E-mails. I totally agree about the therapist but that's one of the problems there are none around here just l. I need someone to help me outline a plan. Babysteps but that's what works. I always feel so guilty for not doing things. In the past I couldn't care less what others thought and that was when I worked. Used to be able to fly on airplanes by self, and drive long distances by self. No I haven't taken the first dose yet. Waiting to see how you think it will affect my depression/anxiety. It's l00mg Theo 24. Doc said to take with breakfast to help with side effects. Love PJ O
Posted by Phillipa on August 14, 2005, at 19:07:42
In reply to Re: Whatever Happened To Me? » Phillipa, posted by Sarah T. on August 14, 2005, at 17:43:39
Sara, Thanks for your support and concern. My taste left a year ago last April. I saw the first specialist at the Wake Forrest Medical Center in Winston Salem NC. His tx recommendation was the same. But it seemed like voodo to me. I live in NC near the Beach. But this Dr. Henkin is supposed to be the worlds first and best. Google him at Washington DC Taste and Smell Clinic and you'll see all his sites. He's mean and ugly and I was ready to go home. But he's associated with Georgetown university. This is such a specialty there are only 4 I believe in whole USA. Other lab values were my vita D was low so he said take a supplement. No he didn't repeat the ANA but I had a lot of medical records from lymes specialist who tx'd my chronic lymes, and MRI's of brain, sinuses, neck which I brought with me. I'm waiting to see what Ed says about how the theophylline will affect my depression/anxiety as i trust him the best. Fondly, Phillipa
Posted by 4WD on August 14, 2005, at 22:29:19
In reply to Whatever Happened To Me?, posted by Phillipa on August 14, 2005, at 12:10:23
> Hey guys, I know I'm a very frustrating person. And according to my doctors a very complicated person due to existing medical conditions like elevated ANA. I've tried all the popular AD's and antianxiety meds and at first the benzos worked and now they don't. I've gone to various pdocs and even put myself into the hospital in hopes of I guess a miracle but no change. Things keep getting worse. I used to be such a high achiever, and the best psych RN but now I'm afraid to be alone in the house or go out by myself. My husband has had it and I have too. Even if you don't believe it I have no Taste or Smell. Went to DC to a specialist, one of only in world and he wants to try Theophylline. I'm scared. Does anyone know how this feels? Think of putting a food you like in your mouth and nothing. I used to be so out going. Now I'm to scared to do a thing. Anyone have any ideas? Now we may have to move to Florida for my husband to get a job? I need to get help now or I'll never make it. So Please help if you can. I try to excercise and sit still but I can't. Too scared of what? I don't know. Don't say get a new pdoc I think I've been to all of them in the area. And when you go to a specialist with a medical problem they say depression and anxiety isn't my specialty.Fondly, Phillipa
Hi Phillipa,I'm so sorry you are feeling so bad. I wish I could help you so much. I also feel like I am a very frustrating person. When they prescribe something and I go back in and say "I can't take this - the side effects are too bad" it's like they think I don't want to get well. Or if I say somthing doesn't work, they are surprised because it works for others.
You are not alone. I care about you and will pray for you. Wasn't the Luvox helping at all?
Marsha
Posted by MidnightBlue on August 15, 2005, at 0:07:13
In reply to To Sara T, posted by Phillipa on August 14, 2005, at 19:07:42
Phillipa,
I'm so sorry you are feeling so poorly. I do know a bit about theophylline. I used to have to give it to my son for asthma. It made him a bit hyper and his mood was all over the place. For instance, he cried because his hand got wet when he touched the car door. He was about 7 at the time! This was WAY out of character for him.
I'm sorry I don't know about how high a dose this is but I do know it can make you jittery. Sorry!
Hugs,
MidnightBlue
> Sara, Thanks for your support and concern. My taste left a year ago last April. I saw the first specialist at the Wake Forrest Medical Center in Winston Salem NC. His tx recommendation was the same. But it seemed like voodo to me. I live in NC near the Beach. But this Dr. Henkin is supposed to be the worlds first and best. Google him at Washington DC Taste and Smell Clinic and you'll see all his sites. He's mean and ugly and I was ready to go home. But he's associated with Georgetown university. This is such a specialty there are only 4 I believe in whole USA. Other lab values were my vita D was low so he said take a supplement. No he didn't repeat the ANA but I had a lot of medical records from lymes specialist who tx'd my chronic lymes, and MRI's of brain, sinuses, neck which I brought with me. I'm waiting to see what Ed says about how the theophylline will affect my depression/anxiety as i trust him the best. Fondly, Phillipa
Posted by anneL on August 15, 2005, at 1:13:50
In reply to Whatever Happened To Me?, posted by Phillipa on August 14, 2005, at 12:10:23
Hi Phillipa,
From one nurse to another. . . Volunteer 1 hour of your time every week to help someone who so desparately needs the helping hand of someone who is so compassionate and resourceful. The power and magnificence of healing others will help to restore your faith in yourself. At first I cried because I had no shoes and then I cried because I met a man who had no feet. God put you on this earth to do great things. Go do them 1 hour at a time. Hugs, Laurie
Posted by ed_uk on August 15, 2005, at 4:11:30
In reply to Re: Whatever Happened To Me? To ED, posted by Phillipa on August 14, 2005, at 18:15:15
Hi PJ!
Theophylline often causes side effects similar to caffeine. How do you like caffeine?
>I guess you do keep up with your Babbles and E-mails.
I read them all - but sometimes I don't have time to reply straight away.
>Doc said to take with breakfast to help with side effects
That's usually the best way to take it :-)
~Ed xxx
Posted by Declan on August 15, 2005, at 14:34:34
In reply to Re: Whatever Happened To Me? To ED » Phillipa, posted by ed_uk on August 15, 2005, at 4:11:30
Hi PJ
Bad time eh? You are certainly really loved and respected here. Bad times, bad times, well....
I did, I think, hear of a bad reaction to aminophylline, someone famous had a son who walked off a building. I suppose it's a variation on theophylline. Some weird personality effect.
All the best
Declan
Posted by wildcard on August 16, 2005, at 13:47:20
In reply to Re: Whatever Happened To Me? To ED, posted by Declan on August 15, 2005, at 14:34:34
Now look above and you will see so very many that love you and are here to support you through this. It is not easy at all but it is by NO means any fault of yours! You are special and unique and most importantly, loved. We keep in touch each day by email but i wanted for u to take one moment,look at ALL the support for YOU, and breathe. *WE* will make it together...that's what friends are here for..and i hope you know u can call, day or night ok?! Hang in there, i know you will make it through...ur friend-abb
Posted by Empathy on August 17, 2005, at 22:22:21
In reply to Whatever Happened To Me?, posted by Phillipa on August 14, 2005, at 12:10:23
I understand your feelings.
I OFTEN think "whatever happened to me", too... Where did I go? You are not alone. Hopefully, there is some comfort in that.
I have known people that have lost their sense of smell and taste - my aunt for one. It may have been part of her auto-immune disorder. There is a genetic problem with auto-immune within my family and most of the female members have some manifestation of it, either with Chemical Sensitivities or Fibromylagia or other things. We all test with a positive titer. Mine is higher at times than at others.
I also knew someone that lost their sense of taste because of a zinc deficiency, they were exposed to a lot of copper and it pulled zinc from their system and one of the symptoms was a loss of taste. Strange but true.
Posted by Phillipa on August 17, 2005, at 23:32:55
In reply to Re: Whatever Happened To Me?, posted by Empathy on August 17, 2005, at 22:22:21
Empathy, Not strange but true. I have a high ANA. And the doctors other choice was zinc. Turn on your babblemail on Bob's home page and lets talk more okay? Did your Aunt get her taste back? Fondly, Phillipa
Posted by Phillipa on August 17, 2005, at 23:34:34
In reply to Re: Whatever Happened To Me?, posted by Empathy on August 17, 2005, at 22:22:21
Empathy, They also said that I had fibromyalgia, and also chronic lyme's disease. Fondly, Phillipa
Posted by Empathy on August 18, 2005, at 0:04:56
In reply to Re: Whatever Happened To Me? » Empathy, posted by Phillipa on August 17, 2005, at 23:32:55
What is Babble Mail and how do I enable it?
I can't stay on tonight any longer - I wish I had seen your post sooner.
I just started taking some Seroquel (25mg) tonight to help with some extra anxiety caused since my friend killed himself... the med has hit and I feel like sleeping... which is good :)
Tell me how to do the mail thing... I will be back tomorrow.
Take care.
Posted by wildcard on August 18, 2005, at 0:37:14
In reply to Re: Whatever Happened To Me? Phillipa, posted by Empathy on August 18, 2005, at 0:04:56
when u wake up, go to admin. board and it should lead u from there but i'm not 100%. nite
Posted by Empathy on August 18, 2005, at 15:46:33
In reply to Re: Whatever Happened To Me? Phillipa, posted by Empathy on August 18, 2005, at 0:04:56
I enabled that feature today.
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