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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 5 to 29 of 29. Go back in thread:
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.
Posted by Phillipa on August 18, 2005, at 16:42:16
In reply to Re: Whatever Happened To Me? Phillipa, posted by Empathy on August 18, 2005, at 15:46:33
Your still not lit up. Go to the home page of Dr. Bob where you registered. It will show you two circles click the babblemail on. Fondly,Phillipa
Posted by Sarah T. on August 19, 2005, at 0:48:56
In reply to To Sara T, posted by Phillipa on August 14, 2005, at 19:07:42
Hi Phillipa,
I'm sorry it has taken me so long to respond to you.
A few days ago, I came across an article about the loss of the sense of taste in a magazine called "Arthritis Today." An otolaryngoloist by the name of Christina McAlpin, M.D. (at Cedars-Sinai Hospital in LA) was quoted as saying that Sjorgen's syndrome, an autoimmune disorder, can cause erosion of taste buds; however, she said that sinus problems are a more likely cause of taste loss. Inflammation of the nasal passages, nasal polyps, and infection can affect both smell and taste.
Many medications, including decongestants, can dry out the nasal passages to such a degree that there is no mucous to absorb molecules and transmit messages to the brain. Other medications that are known to affect smell and taste are antidepressants, such as amytriptyline, doxepin and fluoxetine; corticosteroids, such as dexamethasone or hydrocortisone; DMARDS, such as penicillamine or auranofin; and NSAIDS, such as diclofenac (Voltaren).
Dr. McAlpin also said that smoking and inflammatory diseases, such as rheumatoid arthritis, can damage the lining of the sinuses and prevent messages from being sent to the brain. Zinc deficiency is another cause of taste loss and smell loss.
It's such a disappointment to have a negative experience with a highly respected physician. Perhaps the doctor you saw was one of those who is so busy with research and writing papers that he has forgotten how to relate to patients. It's particularly difficult to have that kind of experience when you've heard that someone is "the best." When a physician is praised like that, you can't help but have high hopes.
You mentioned that you have chronic Lyme Disease. I wouldn't be a bit surprised if that had something to do with the taste loss. Every one I know who has had chronic Lyme has had multiple body systems affected by the disease. Were you diagnosed with Lyme very late in the course of the disease?
I wish that you would begin to feel better very soon. Please continue to let us know how you're doing.
S.
Posted by Phillipa on August 19, 2005, at 17:23:03
In reply to Re: Phillipa » Phillipa, posted by Sarah T. on August 19, 2005, at 0:48:56
Sara T, You certainly took a lot of time to research the subject and everything you said I know to be true. Zinc was one of the meds he mentioned. But he chose theophylline as the other specialist at Wake Forrest Medical Center did. And he had prescribed theophylline too. No no sinus problems or rheumatoid arthritis only osteoarthritis and Sjornes was tested for at Wake Forrest last Oct. The reason I didn't take the theophylline then was it sounded too bizarre and i was afraid. Have seen patients become so nervous on this med. But the funny thing is I've become very tired since starting this dose. Dose to be increased in a week to 200mg one at breakfast and one with lunch. According to both doctors this is very common and leads to depression. Imagine eating and not tasting a thing that's depressing. And the other thing is I've gained l0lbs since it all began. I am never hungry or feel full. I eat what I'm supposed to eat and when they did a diet analysis I was only getting 50% of needed calories . So the other lady at the clinic has been on 600mg of theophylline for 3years and only has 70% taste back. But her problem was with her nose. I still need to research this some more. Any other research or links would be appriciated. Thanks so much, Fondly, Phillipa
Posted by Phillipa on August 19, 2005, at 17:26:22
In reply to Re: Phillipa » Phillipa, posted by Sarah T. on August 19, 2005, at 0:48:56
Sara T., I forgot to mention that yes my lymes's was detected late in the disease. I now test negative for active lymes but will always be positive for having the disease. So many variables. Even this specialists said I was a difficult case. Fondly, Phillipa
This is the end of the thread.
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