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Old 05-08-2011, 06:56 PM   #1
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Klonopin for PVVN-Post Viral Vagal Neur - LPR

Anyone been prescribed Klonopin for PVVN - I have vocal fold paralysis - EMG of throat shows clear signs of nerve damage (2+ and 3+). Suspect Vagus Nerve damage with an event prob. 3 years ago - not sure how they can tell? PH study dual probe revealed reflux events (30 events ph less 5) past the UES. Manhometery (sp) however revealed no issues with LES or UES functioning. Was told to do 2x Protonix PPI and Zantac coupled with Klonopin. Have not seen any posts recommending this treatment for PVVN... seen Neur., Elavil, etc., but not Klonopin. Any thoughts?

Further, it is my instinct to begin treatment one at a time. In other words, dont initiate PPI treatment yet (FYI it has already failed over the past 6 months), but rather Klonopin alone coupled with Zantac, Gaviscon and hard PH correct diet (which I am currently on). Then I can isolate impact of Klonopin on my issues of air in stomach feeling, dry cough, body twitching, etc.

Thanks all

 
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Old 05-09-2011, 04:13 PM   #2
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Re: Klonopin for PVVN-Post Viral Vagal Neur - LPR

Hi Clark.
I think they can tell by the movement of a vocal chord when they are looking down your throat with a camera. In my case, the doctor noticed a spastic twitch in the left vocal chord, which is exactly where the sensation was and sometimes still appears (though now it's a minor nuisance, nothing like the hell I thought would never end last fall).
About Klonopin, I have heard of it being used lately. A specific case, just search on the internet these words "hill repair CMaso" you can watch this guy get freaking stomach surgery, still have the throat thing, he finally goes to jamie koufman, she puts him on klonopin, and he disappears, like everyone does after their problem is solved...

He raves about klonopin. I think it's similar to elavil but maybe a slight improvement. It's a tetra cyclic, instead of a tri cyclic anti-depressant. 4 cycles has got to be better than 3, right? I think only tiny amounts of it are needed for big results. I recommend trying it. I don't know why they would hand out reflux meds though, if it's nerve damage.... That's fishy. As in, the doctor probably has a good reason$ to prescribe that as well. If I were you, I'd just follow the klonopin instructions and not bother with the ppis. But it's up to you.

 
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Old 05-09-2011, 04:40 PM   #3
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Re: Klonopin for PVVN-Post Viral Vagal Neur - LPR

Quote:
Originally Posted by Seeking Sunrise View Post
Hi Clark.
I think they can tell by the movement of a vocal chord when they are looking down your throat with a camera. In my case, the doctor noticed a spastic twitch in the left vocal chord, which is exactly where the sensation was and sometimes still appears (though now it's a minor nuisance, nothing like the hell I thought would never end last fall).
About Klonopin, I have heard of it being used lately. A specific case, just search on the internet these words "hill repair CMaso" you can watch this guy get freaking stomach surgery, still have the throat thing, he finally goes to jamie koufman, she puts him on klonopin, and he disappears, like everyone does after their problem is solved...

He raves about klonopin. I think it's similar to elavil but maybe a slight improvement. It's a tetra cyclic, instead of a tri cyclic anti-depressant. 4 cycles has got to be better than 3, right? I think only tiny amounts of it are needed for big results. I recommend trying it. I don't know why they would hand out reflux meds though, if it's nerve damage.... That's fishy. As in, the doctor probably has a good reason$ to prescribe that as well. If I were you, I'd just follow the klonopin instructions and not bother with the ppis. But it's up to you.
Thanks - I have read many of your posts. I too from the outset of my problems believed this was likely nerve related given sudden onset and nature of conditions (see my initial post). Still struggling. Nice to hear that you are feeling better. I show left vocal cord issues, coupled with the EMG confirming nerve damage. I also have all the symptoms of LPR and a PH study to confirm the frequency of acid. On the Klonopin only now... and am having severe stomach cramps/pain, had to leave work. Giving it a chance, hoping it subsides. Stomach pain could be residual from Protonix which I used for the first two days at double dose. I am hoping to nail down which of these Either way, once i find out which one is the culprit I am going with the other for a two week trial - coupled with a diet of PH>5.

 
Old 05-28-2011, 03:23 PM   #4
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Re: Klonopin for PVVN-Post Viral Vagal Neur - LPR

TclarkLPR,

How have you been doing on Klonopin?

Dr. Koufman has done tests on me and I seem to have both PVVN as well as LPR (a somewhat rare thing) - so my situation is somewhat similar to yours. Further, I can not take PPIs (horrible side effects). So, I am on gabapentin right now. I am also on Zoloft for anxiety/depression. I've seen some improvement but it is early days I think. I do get some side effects from gabapentin (groggy head in the AM and no interest in starting the day basically).

I also got prescription for Klonopin from my psych (but I've heard it can be very addicting, so I've not started on it - and will use it only on an as needed basis).

 
Old 05-28-2011, 03:44 PM   #5
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Re: Klonopin for PVVN-Post Viral Vagal Neur - LPR

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Originally Posted by ppiless View Post
TclarkLPR,

How have you been doing on Klonopin?

Dr. Koufman has done tests on me and I seem to have both PVVN as well as LPR (a somewhat rare thing) - so my situation is somewhat similar to yours. Further, I can not take PPIs (horrible side effects). So, I am on gabapentin right now. I am also on Zoloft for anxiety/depression. I've seen some improvement but it is early days I think. I do get some side effects from gabapentin (groggy head in the AM and no interest in starting the day basically).

I also got prescription for Klonopin from my psych (but I've heard it can be very addicting, so I've not started on it - and will use it only on an as needed basis).
I am doing well on the PPI treatment and dietary changes, but failed horribly with the Klonopin - which made me very fatigued at low doses and frankly depressed in only one weeks time. I do OK with a another benzo - Xanax, but just couldnt take the Klonopin. I was switched to Neurontin - my hypersensitive body reacted opposite. I was very anxious and irritable - after only two smal doses.. really strange. Next, I have been given Elavil - which I am not taking for a bit. I want to let my head rest for a week or two and see if some of this crap can improve on its own without the head drugs. So I am only on PPI and diet changes. Now - two symtoms are currently driving me crazy - a tight throat feeling that includes a pressure sensation right below my Adams Apple and some vocal fatigue issues. Also, I have days with bad breathing but this is less frequent. The throat issue isnt bad when I eat or in the morning. In the afternoon it gets pretty intense and I pop a Xanax for some relief... which I know isnt good... but hell, it helps for a bit.

A couple of questions for you - our situtation is strikingly similar:

1) Was the PVVN diagnosis backed-up by vocal cord pareisis or disfunction and a LEMG test?
2) What did your manhometry test say? Is your LES and UES working OK?
3) What did your PH test report - how many times did you reflux over PH5 in the upper probe?
4) What are your primary symptoms currently? Did they start immediately after a virus, a stressful time and cold????
5) Let me guess... were you first given Protonix... then Nexium...?

 
Old 05-28-2011, 04:26 PM   #6
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Re: Klonopin for PVVN-Post Viral Vagal Neur - LPR

Quote:
Originally Posted by tclarklpr View Post
A couple of questions for you - our situtation is strikingly similar:

1) Was the PVVN diagnosis backed-up by vocal cord pareisis or disfunction and a LEMG test?
2) What did your manhometry test say? Is your LES and UES working OK?
3) What did your PH test report - how many times did you reflux over PH5 in the upper probe?
4) What are your primary symptoms currently? Did they start immediately after a virus, a stressful time and cold????
5) Let me guess... were you first given Protonix... then Nexium...?
- Yes, there is vocal cord paresis and the LEMG test showed I've "HAD" PVVN and that it is healing now (I don't know how they can tell that - but that is what they said .. that the muscles/nerves are healing now).
- Manometry normal for both LES/UES
- pH test report [in the upper probe: upright: 53, supine: 9]
- My initial symptoms were mucous in the throat and esophagus roughness (endoscopy normal). After 5 weeks on PPIs (prilosec, nexium, prevacid, protonix) - I was toast with all kinds of side effects - but i guess it healed the esophagus. Now, with the strict diet, it is mainly throat issues after reflux during the day (yes, my mornings are much better).
- Neurontin is not perfect for me either .. but I get to sleep through the night and the AM throat is much better as a result. I start refluxing mid-day after lunch and then for a couple of hours .. and then the throat starts to hurt. I think, in the last few days it is slightly getting better, but I am not quite sure.

 
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Old 05-28-2011, 08:18 PM   #7
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Re: Klonopin for PVVN-Post Viral Vagal Neur - LPR

I wonder sometimes if the reflux is not a red herring. I mean, even with readings for reflux episodes, would they even be a problem without the nerve damage.

Well, I'm not a doctor...... Doctors seem to think it's worth pursuing the reflux. I can't stop thinking that the nerves are the only real issue, because when people with horrible throat symptoms get surgery, their reflux episodes go down sometimes to zero, and the throat problem is still there.

And in reality, the throat symptoms are all people ever want to stop in the first place. Thus, my worry that concerns about reflux are a red herring, and that the medical community would be doing a better service to everyone if they totally focused on therapies for the nerve issues rather than solving reflux.

 
Old 05-29-2011, 08:21 AM   #8
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Re: Klonopin for PVVN-Post Viral Vagal Neur - LPR

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Originally Posted by Seeking Sunrise View Post
I wonder sometimes if the reflux is not a red herring. I mean, even with readings for reflux episodes, would they even be a problem without the nerve damage.

Well, I'm not a doctor...... Doctors seem to think it's worth pursuing the reflux. I can't stop thinking that the nerves are the only real issue, because when people with horrible throat symptoms get surgery, their reflux episodes go down sometimes to zero, and the throat problem is still there.

And in reality, the throat symptoms are all people ever want to stop in the first place. Thus, my worry that concerns about reflux are a red herring, and that the medical community would be doing a better service to everyone if they totally focused on therapies for the nerve issues rather than solving reflux.
Good morning Seeking Sunrise - hope all is well. I don't disagree with you, but I am second guessing things that I have been told - I am starting to think that the nerve damage thing might be as mysterious as the old LPR diagnosis (as noted, I guess I have both according to my ENT). I am told that I have nerve damage - that happened "3 years or so ago." I have talked with two other folks on this board as well - they were also told that they have PVVN that happened "3 or so years ago." Vey convenient this 3 year marker. Now, we are all from the Northeast, so it is possible that our water got infected around the same time... but I just find it odd. I sort of wonder if this is more muscular/tension. I didn't develop this feeling until after developing other medical issues (LPR burps, etc.) and stressing over them. My body just seems a bit out of whack and a little shell shocked.

Have you looked into the symptoms of Cricopharyngeus Spasms? These are my symptoms - perfectly explained. See the videos by Dr.Robert Bastian. The only thing I would say is that mine doesn't feel like a golf ball, but more like a strangle hold with a touch of finger in the middle of the throat. Many find relief from CS by muscle relaxants (Xanax, Valium, Flexiril, etc.) and passage of time....the act of eating can actually also provide some relief..... some of the drugs that treat our mysterious nerve damage have muscle relaxant attributes - like Klonopin, Elavil, etc. Are we treating the "nerve damage that happened three years ago...that all of a sudden have appeared to wreak havoc" or are we relaxing the UES muscle network, thus providing relief?

The one thing almost EVERYONE on this site seems to have a little of is anxiety/tension/stress - this may be the cause of problems, or likely might be a reaction to certain medical issues that cause the stress. Nonetheless, might it be that these feelings are manifesting themseleves in our UES - vis a vis Cricopharyngeus Spasms? Thanks! Talk soon.

 
Old 05-29-2011, 09:18 AM   #9
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Re: Klonopin for PVVN-Post Viral Vagal Neur - LPR

Quote:
Originally Posted by Seeking Sunrise View Post
I wonder sometimes if the reflux is not a red herring. I mean, even with readings for reflux episodes, would they even be a problem without the nerve damage.

Well, I'm not a doctor...... Doctors seem to think it's worth pursuing the reflux. I can't stop thinking that the nerves are the only real issue, because when people with horrible throat symptoms get surgery, their reflux episodes go down sometimes to zero, and the throat problem is still there.

And in reality, the throat symptoms are all people ever want to stop in the first place. Thus, my worry that concerns about reflux are a red herring, and that the medical community would be doing a better service to everyone if they totally focused on therapies for the nerve issues rather than solving reflux.

How are the nerve issues solved in any case? Does one have to keep taking these neuro drugs forever? I would guess it depends on the severity of the damage to the nerve(s) .. but aren't these drugs just helping you cope with the symptoms until things resolve - if at all?

 
Old 05-30-2011, 07:44 AM   #10
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Re: Klonopin for PVVN-Post Viral Vagal Neur - LPR

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Originally Posted by tclarklpr View Post
Good morning Seeking Sunrise - hope all is well. I don't disagree with you, but I am second guessing things that I have been told - I am starting to think that the nerve damage thing might be as mysterious as the old LPR diagnosis (as noted, I guess I have both according to my ENT). I am told that I have nerve damage - that happened "3 years or so ago." I have talked with two other folks on this board as well - they were also told that they have PVVN that happened "3 or so years ago." Vey convenient this 3 year marker. Now, we are all from the Northeast, so it is possible that our water got infected around the same time... but I just find it odd. I sort of wonder if this is more muscular/tension. I didn't develop this feeling until after developing other medical issues (LPR burps, etc.) and stressing over them. My body just seems a bit out of whack and a little shell shocked.

Have you looked into the symptoms of Cricopharyngeus Spasms? These are my symptoms - perfectly explained. See the videos by Dr.Robert Bastian. The only thing I would say is that mine doesn't feel like a golf ball, but more like a strangle hold with a touch of finger in the middle of the throat. Many find relief from CS by muscle relaxants (Xanax, Valium, Flexiril, etc.) and passage of time....the act of eating can actually also provide some relief..... some of the drugs that treat our mysterious nerve damage have muscle relaxant attributes - like Klonopin, Elavil, etc. Are we treating the "nerve damage that happened three years ago...that all of a sudden have appeared to wreak havoc" or are we relaxing the UES muscle network, thus providing relief?

The one thing almost EVERYONE on this site seems to have a little of is anxiety/tension/stress - this may be the cause of problems, or likely might be a reaction to certain medical issues that cause the stress. Nonetheless, might it be that these feelings are manifesting themseleves in our UES - vis a vis Cricopharyngeus Spasms? Thanks! Talk soon.
That was my questions all along. I also have a full left vocal fold parisis. My UES closes our of sync and to tight. So thatís where I differ a little then the rest of you. I did have LPR and had some throat inflammation that through diet and ppiís I was able to hear my throat completely but I always had either tightness or trapped air sensation in my throat. I thought after I got my throat healed it would go away since acid can make the USE hypersensitive. Amitriyple 25mg was a wonder drug for me. It made me swallow great and no more sensations but my chest was burning like crazy. I was convinced it was making me get GERD like symptoms as it can make your LES relaxed. Jamie gave me a scope to look at my esophagus and stomach everything was absolutely normal. No irritations. So she said it has to be neurogenic burning pain. I weaned myself down off the amitiriyplne and my throat got extremely tight but the burning got better. Did another Manometry and my UES pressure was through the roof 450hg+
I got my UES botoxed and after that I didnít have the feeling someone was choking me but I still get these weird f**king sensations in my throat that drives me mad. I am so damn depressed. Amitriptyline worked for me at 25mg but it gave me a horrible burning in my chest. I tried Gabapentin with a small dose of amitriylne and it dried me out. Switchedd to lyrica coupled with amitriylne gave me the jitters at night. I am on Klonopin with amitriyline and it helps a little but I feel like tired all the time and donít want to be on klonopin long as itís very addicting, plus it doesnít give me complete relief. I am at my wits end. I can't take it. This nightmare has been going on now for a year. It has ruined my life. I keep asking myself how did I get like this? Whatís wrong with me. Why is this happening to me. I used to eat like an animal and now I am so careful what I eat. I am in the best shape of my life deit wise but I feel like I am so misunderstood. People canít comprehend what we are all going through. To have these throat tightness or sensations is hell on earth. People complain about that back or there knee but this is our friggen throats! Itís one the most sensitive parts of our bodies.

Also something to look into. If you are getting sensations only above your adams apple and not below it could be your lingual tonsils. Even if you get your tonsils out like I did you still have theses. They are tonsils behind your tongue. Sometimes they get enlarged or inflamed and cause crazy sensations.

To answer the question about how long does it take for this stuff to go sway. When you get the right med it could take 6-12 months to calm the nerve down although no one knows for sure. I wish more research was going into this stuff but with PPIís addressing 90% of peoples that small amount of us that donít get better are left in the cold.
Anyone wants to PM me and talk feel free. I am always open to speaking with others who share in this nightmare.

 
Old 06-21-2011, 01:03 PM   #11
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Re: Klonopin for PVVN-Post Viral Vagal Neur - LPR

Assuming we've had PVVN, can these symptoms go away even without using the nerve drugs? So are the nerve drugs only used to help us handle the symptoms - or they are actually "healing" the nerve as well?

 
Old 06-21-2011, 01:12 PM   #12
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Re: Klonopin for PVVN-Post Viral Vagal Neur - LPR

The nature of neuropathy is that your nerve is sending a false message to your brain. If you think about it like that, removing that false message through an interference with the neurotransmitters in fact amounts to a cure.

If the nerve will ever stop sending false messages or not, I asked Murray Morrison, and he said it's a crap shoot. You might as well flip a coin. But in my opinion, the only thing someone needs to be cured is to stop a false sensation being created in their brain. It won't ever be fatal or anything so there is no reason to worry too much about anything besides discomfort, in my humble opinion.

If someone said, from a financial standpoint, they don't want to have to keep paying for numbing agents, that would make more sense to me than concerns that we are merely masking the sensation. A sensation is all it really is, from one perspective, so numbing it is in fact its cure. Anyway, a lot of people have misgivings about merely masking it, so I can see your perspective too, admittedly. But my opinion remains that masking a harmless, but uncomfortable, problem amounts to a cure as long as the masking lasts. That is why I still think alcohol (in moderation, or not) is a good relief for PVVN.

 
Old 06-21-2011, 05:28 PM   #13
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Re: Klonopin for PVVN-Post Viral Vagal Neur - LPR

Well.. the reason I am asking is .. I get severe brain fog and grogginess on gabapentin plus the suicidal thoughts intensify on gabapentin (even as low as 50mg / night) ... so I've decided to stop gabapentin now after about 4 weeks on it. I've become very sensitive to drugs in general. I am hoping that the nerves would heal on their own one day .. otherwise, I'll have to get back on these / such masking agents.

 
Old 06-21-2011, 05:47 PM   #14
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Re: Klonopin for PVVN-Post Viral Vagal Neur - LPR

Hi - I am seeing a well respected pain management dude - Dr. Dillard in NYC - he manages the drug treatment and therapy of my ENT's "neuropathy of the throat" patients. He is a one stop shot... MD, Chiro, Nutrition and Accupuncture. I have a VERY sensitive central nervous system... basically, any of these drugs that touch my brain set me off in one way or the other. Anyway, one thing that he taught me (and I am seeing some improvement these days) is to work off of a floor... one drug at a time. I have tried Klonopin, Neurontin, Xanan, Elavil. On all of these drugs... I started too agressive out of the box and failed. Recently, I started using Elavil - ONLY 1MG! (I break the pill up) - and many of my symptoms started to fall away... not perfect, and I am only on day two of this floor expirement... but hey, Dillard may be on to something. I was seeing Koufmann and her agressive treatment about tore me up on the inside.. you name it, dizzy, depressed... all over the map. Today, I felt really good on a VERY small dose. Also, I have two ENTs (just makes me feel better to have two opinions) and both agree that these drugs "calm the nerve" and both said "most get better over time as things can heal"... this is the bridge over troubled waters. Also, one thing Dillard is stressing with me is to create an enviornment that is good for the nerve to heal... get online and read Dr. Weills stuff about Anti Inflammatory diet and supplementation. I just started a supplement cycle - multivitamin, Alpha Liporic Acid, Ginger, Magnesium and Omega fish oil... all of this supports "nerve healing" and is conducive to feeling better...

Now, I am totallly new to this regimen so time will tell if it works...I'll report in once I finally feel like things are cooking. Another thing that you should do if you havent... get the full MRI of the brain and neck... also endocopy and colonoscopy. Why? My doc said... prob not necessary, but part of healing is also mental... if you rule out all of the truly bad life threatening things, you can focus on turning your attention to our little neuropathy and finding ways to feel better. Also, like Seeking Sunrise said, I have found that red wine and Guiness can be good too in moderation. I still have flu like symptoms sometimes, so I have to drink in moderation for the time being... but it helps to relax. Another thing is a personalized inhaler that you can buy at Duane Reade or CVS from Vicks... I do this twice a day for 10 mins... it relaxes the throat and airways... just a nice addition... not a cure, but again one more thing in our arsenal to feel better. Take care...

 
Old 06-21-2011, 06:19 PM   #15
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Re: Klonopin for PVVN-Post Viral Vagal Neur - LPR

Thanks - good info tclarklpr.

Klonopin does seem to help me but I haven't got on it on a daily basis as I am afraid of the benzos in general. I don't have a prescription for elavil yet, may be I should get it from my psych. I am on Wellburtin starting today for depression (zoloft bothered me a lot in a few days so could not ramp up on it) - however I am not sure if wellburtin calms the nerves or not like the others do.

Now the question is ... what happens when the nerve is "healed" or the "message to the brain gets back to normal"? I am hoping for the following type of thing to happen:
Nerve heals ==> Reflux goes down ==> Throat heals

Is this what you are hoping for as well?

 
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