posted
I saw the doctor last week - what a nightmare. My appointment was at noon, and I didn't see him until after midnight. I got home just before 3am. Is that insane or what? I even tried to speed him up some by threatening suicide, but nobody even blinked, so maybe he hears that a lot. I was actually serious.
Consequently, my personality changes in his office every time. The magnetic field in his office, though lower than in my home, pulses to about 10 milligauss or so every 10 seconds. Are there any airports in West Chester?
I test positive for babesia, but my insurance will not cover malarone at all. My insurance will cover mepron, but my copay would be $343. Now if one month of it would cure me, I'd throw it on my credit card and be done with it, but it seems most people have to be on it a long time, and I can't afford that amount.
The insurance company said the alternative would be qualaquin (generic quinine) and zith. My doctor won't put me on that unless I get an EKG first. There are several problems with this alternative.
First - I have quinine powder in my cabinet. I took quinine powder already, and I'm still testing positive for babs. So why even take their quinine or mine? - it didn't cure me - it just made my heart beat really fast and caused me to wake up even sweatier.
Second - why the EKG? I am convinced that if I didn't die of heart failure with the way my heart was beating last year, especially during the stress test they put me through or while taking the quinine on my own, I never will.
And if I were to get any further testing done (other than bloodwork), meaning scans or whatnot, I would want an ultrasound of my salivary glands and whatever they would ultrasound to check for an acoustic neuroma. I don't want any more x-rays, CT scans, MRIs, SPECTs, etc... Can they ultrasound these two things?
I want these things scanned - especially my salivary glands - because these tumors have been linked to cordless phone use, and I think this is why my teeth are staining, even on Cipro now. I used to produce too much saliva - now I don't think I produce any. With no saliva, my teeth pretty much lose. I don't produce tears either anymore.
Finally, I don't think I can take qualaquin anyway while I'm on Cipro. It would interact, and my doctor should realize this. How long does Cipro stay in the bloodstream anyway? Obviously, I'm on my own again trying to prevent doctors from killing me, now with drug interactions.
I really don't think Cipro is doing much for my remaining symptoms anyway, so maybe bartonella isn't an issue - at least not a primary one. I'm thinking ehrlichia, Lyme, and babs were my main offenders. I'm not sleeping at all on Cipro either - not that I was sleeping great before it, but now it is unbearable again, and my depression and anxiety are back full-force, too.
Sorry this is long, but what now? Something is still living in my ears, eyes, and salivary glands.
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Hey Tailz!
I don't think threatening suicide is a really great idea. You kind of say that a lot-
It really isn't funny or cute. If they believed you you could end up in a psych ward. If you really are serious about suicide maybe you should get some help?
I am not trying to be rude of hurt feelings but suicide is not something that should be said just to get your appt faster or get your way.
I hope you find the answers you are looking for.
Melissa
Posts: 3905 | From USA | Registered: May 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Dearest Tailz!!!
What about Artemisia? Doc Zhangs is $30 a bottle. I used to recommend the nutibiotics with grapeseed extract before lately because it was WAY cheaper but $30 a bottle is still cheap compared to Mepron- their order line is 1-888-788-4372. If you are totally broke and can't afford it I could buy some for you-
Suicidality can definitely be caused by untreated Babesiosis!!!! I am glad you are still with us. I really like you- Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Quite honestly, there is something wrong with that picture. Your appointment was at noon and your dr. saw you at midnight? I think this is a poor reflection on your doctor, sorry to say.
I realize all LLMD's are completely filled with way more patients than they can probably handle. They are trying to help as many people as they can. But I often wonder how healthy it is for them to work the hours they do.
Of course without them, we would have no drs. and all be hypochondriacs or dead somewhere.
But still, that sounds way too unprofessional to me. Someone should have rescheduled you. That office should have closed at a decent hour.
Doesn't sound right at all.
Be that as it may, if you trust your LLMD, then what can you do? It happened. If it were me, I might consider another, especially if the experience caused me to consider suicide and then actually vocalize that consideration.
I agree with Sarah, the babesia can cause (or the lyme) feelings of suicide.
If it were me, I'd try one bottle of mepron along with the art recommended above, with the zith and use some psychoneuroimmunology at the same time. But this is not medical advice. What did your dr. say to do again? (I don't remember!)
And find ways to desensitize to the electromagnetic fields because, they aren't going anywhere. You have to toughen up to them and find ways to live with them by strengthening yourself and your own field. Do you think that is possible?
posted
Tailz, please don't take this the wrong way, I can only imagine how hard this disease is on you and everyone, but I have to agree with merrygirl.
Please know that I say this with only the best intentions and deepest concerns. I have lost three people that I loved dearly to suicide. I have a "collection" of letters from all of them to remind me of their choices. One was just last year. I spend everyday healing from it, and I will for the rest of my life. When people threaten suicide, it hits me very hard and my heart gets very heavy for the pain they are feeling.
Please, please...if you are truely feeling this way, then you need to get help. You are trying to get help for your lyme..right? Doing everything you can to get better right? Than, if you are truely contemplating suicide, than you need to get help. Please!
Hugs!
Becky
Posts: 68 | From Massachusetts | Registered: Nov 2007
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tailz
Unregistered
posted
quote:If you really are serious about suicide maybe you should get some help?
merrygirl, thanks for your input. I think you've made it pretty clear on this forum that you think I am mentally deranged (many times). Isn't that a problem you might have? - pointing that out to me over and over again? Did you think I forgot? Amazingly, that's one of the few things I can remember. I'm not sure what you expect me to do here though.
Would a psychologically balanced person not be bothered by a 12 hour wait and 4 hours of driving? - two appointments in a row?
Would a psychologically balanced person not be bothered by the lack of tear formation, the lack of saliva, stained teeth, hair loss, an impaired liver, early menopause, impaired blood flow, profuse sweating, non-stop anxiety, and 3 YEARS without sleep?
Would a psychologically balanced person not be bothered a two hour drive home with pupils that don't open wide enough to allow light in so she can see the road? You'll have to forgive me for stomping my little feet here and acting spoiled.
I spent several months sitting in front of a (trained) therapist, listening to her 'little-engine-that-could' examples, and as wealthy as it made her, it sucked me dry, and it did absolutely ZERO for my Lyme, babs, and ehrlichia. What help do you suggest I get then?
My ex-husband went to counseling with me, and gee, I don't know that it did anything to help his rages. Now having his brain tumor removed mellowed him out some though. Hmmm?...
Just curious - have you ever put a pet to sleep? If you did, you are guilty of what you're accusing me of - just wanting the pain to end one way or another.
California Lyme - thanks for your offer. I think I can swing ordering some though. I don't think I'm going to see doctors anymore. He's actually sick with Lyme himself - falling asleep during my appointment even. How much should I take?
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I really wasn't trying to be mean-
I am also not saying you are not very sick. I am sick too tailz. My kidneys all screwed up, I have lost over 1/2 my hair, I have had a fever everyday for 6 months, to name a few, but this is no contest I would like to win,
There have been times in my life where I planned my death tailz.
Yes I have been mentally ill (not deranged)and maybe I still am at times.
One was when I had severe post partum depression not too long ago.
I have also thought about it during the last 6 months of my Lyme ordeal.
I mean right down to what tree I would smash my car into. The only things that stopped me was I thought about what would happen after I was gone.
All the suffering and guilt my kids and family would feel.
I should have been hospitalized. I have been on more Psych meds than I could name.
As far as putting animals to sleep goes- I am a vet tech and I believe strongly in euthanasia to end suffering.
I have personally euthanized sick animals so yes I get it.
I believe that if someone is sick they have the right to decide when enough is enough.
I believe that whatever God or power that be that people may believe in would understand it.
I guess what upsets me is that you say
"I even tried to speed him up some by threatening suicide, but nobody even blinked, so maybe he hears that a lot".
That is not right.
You don't just throw a comment like that out there to speed your doc along.
If my doc was 12 hours late I would have left... that is just me.
I have stuck up for you many times when people have been down right nasty to you here.
Please post the thread where I have said that you are mentally deranged many times? I am not that kind of person.
Those posts do not exist.
I started a support group to help people. Some people just do't want the help they need sometimes.
I really hope the best for you I do..
If I was talking about suicide and "I was totally serious" I would hope that someone here would try to help me.
Melissa
Posts: 3905 | From USA | Registered: May 2007
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tailz
Unregistered
posted
painted turtle - I'm not exaggerating, and I'm not sure if I trust him. He was actually falling asleep talking to me.
And these fields HAVE to go. Today it's just me and 3% of the population that are affected by EMFs, but just give it another 5 years, if that. I guarantee, if you have Lyme, you're affected.
It's looking like there are about 201 of me on this forum, though I'm only one of the few Americans. It's not about buckling down at all - I can't function when I'm exposed, and if I was in a wheelchair, they'd have to accomodate me. How am I supposed to ever hold a job and work like this?:
Becky, at least you have compassion in your reply. I have no idea if I will follow through. I really don't. I absolutely refuse to make the pharmaceutical companies any wealthier though, and in some strange way, I want to know when I am being irradiated so that my body protects me from them.
I have no memory, too, about certain things. I was opening boxes yesterday, and I don't even remember half of my belongings. I have like 12 pairs of shoes I bought and never wore, and I don't remember ever buying them. I have things for my house that I have no clue where they came from. I can't remember roads that I used to drive on. People keep asking, "Don't you remember?" - and I don't. Even some of my clothes aren't what I would buy, and it's freaking me out.
Then there are other things that I remember like yesterday. It seems that I remember the most emotionally-charged events that occurred during this infection, but I forget all the rest. Some things I thought of doing, but I can't remember if I actually followed through or not.
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posted
Have you looked into Sjogren's Syndrome? Some of your symptoms you describe fit. Many of the symptoms of Sjogren's Syndrome and Lyme can overlap.
Just a thought.....
Posts: 561 | From mass | Registered: Jul 2007
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I think I can say with pretty good certainty, that many people on here have felt the way you do, for one reason or another. Many have felt, enough is enough...and for some reason, they find the strength to make it through another day.
I understand your feelings about teh pharmachuetical companies...after my boyfriend Tom hanged himself last year, my doctor tried so hard to get me to take "something for depression".
I refused. I had my own reasons. But, I refused. It took me awhile to agree to go and "talk to someone" as I have a hard time trusting "those people".
I was so lucky. I found someone that became a sort of life line. It took me awhile to trust her, but she wasnt in it to pull the "how does that make you feel crap" or the "what happened in your childhood crap".
She lets me cry without judgement. She lets me say what I need to say. She lets me do all the things that the people around me dont always have the open mind to do. I was so fortunate to find her.
Now, she is helping me with the lyme "thing" as I call it. She is helping me deal with the daily frustrations...and sometimes...I just go there to cry, because I have a hard time doing that anywhere else.
I know it is not for everyone...it wasnt for me until I met her!
I know the devastation of suicide. I know teh devastation it has had on me and I see the devastation it has had on Tom's kids (they were not my kids). We all live with this everyday.
My grandfather hanged himself when I was 17 and it cahnged my life forever. And I had another boyfreind shoot himself in the head when I was 21.
I know this is graphic, maybe someone will come along and ask me to modify my post...but I want to get my message across...
Think of how strongly we feel about Lyme, I too feel this strongly about suicide. It's devastating to the ones you leave behind.
I know this disease is hard...and most of you have been dealing with this a lot longer than me.
I know that I am new here. You guys dont know me. But please know that I truely care.
You have fought so hard for so long..why give up the fight now???
I have learned in life that you cannot control what others do...example Doctors etc...but, you can control what you do...
Please try and stay strong...tomorrow is another day...sometimes that is going to be a good day and soemtimes maybe it wont be...but how will you know if you dont wake up and try!
Sorry this is so long...
Hugs to you tailz and to everyone who has ever been in this place.
Becky
Posts: 68 | From Massachusetts | Registered: Nov 2007
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I hear ya. Okay. Sounds to me like you might want to can this doctor, I mean really! Clearly, you need an attentive doctor.
About the fields, funny, several months ago my partner was driving me to somewhere and I got a sudden shooting pain through my head. I noticed it happened exactly as I was going under a telephone wire. So, I hear you about this stuff.
At the same time, I see it as only one part of the problem, even it a valid part. Surely, the electronics are a problem, and maybe even for the radar of the bees, unless that theory has been disproven.
There are other problems too, like air quaility, water quality, food quality. Let's face it, the earth is not in balance and thus...one of the many problems is......lyme and company.
Still, in my philosophy, I continue to strengthen my own field so that, even though these things are draining me of my energy, and the lyme disease has darn near killed me many times over,
The only thing I can do is strengthen my own core, my own resistance, my own mind in relation to my environment, people energy, electromagnetic energy, bio toxicity and all that.
About memory, I don't worry about it anymore as far as how strange it is to have what seems like a superb memory with certain things and yet completely have no short term memory at all. In fact, I often don't remember what I post! I come back and hope I haven't made a complete fool of myself!
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Tailz, I'm sure you are going to be offended by what I say, and reject it, but I have to offer it up anyway.
The memory issues you describe about buying things, etc. are a classic description of dissociation. Have you ever talked to anyone about this? It is a common coping mechanism people develop to survive in abusive situations; but unfortunately the brain doesn't learn to let it go once one is safe.
Memory lapses, buying things one doesn't remember, not remembering how one got somewhere, losing blocks of time...all descriptive of dissociation,and dissociative identity disorder.
I know you probably won't agree, but I had to say it...it really does fit.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Itsy_bitsyone
Unregistered
posted
Tailz,
HI. I just happened to be passing by and noticed your post.
I got Sjo from Lyme. I haven't had correct saliva or tear production in years. Its caused by chronic inflammation to the exocrine glands from chronic infection, eventually becoming an autoimmune disease.
Sjo is generally displayed as dry eyes, dry mouth, dental problems, Gland and sinus cysts, dry skin with rashes (from lack of skin moisture production) and often also causes neuro and athritis problems of its own, and can attack the kidneys. I was dx'ed by a rhumey (before we knew I had lyme) years ago.
Often you find it with thyroid problem too.
www.sjsworld.org is a great resource with very nice people. I recommend checking it out. Even if you don't have Sjo itself, they will welcome you even with symptoms.
When my eyes were tested, I had no reactive tear production in my left, and less than 2mm in 5 minutes in my right. Or the other way aorund, I forget. Before minocycline, I had enlarged parotid glands for YEARS.
It rotted out my teeth, I cannot take my first bite of food without my saliva glands burning, my eyes will not clear away a peice of dust, I always have swollen lymph nodes, use a LOT of lotion, and have multiple sinus cysts.
Mino did and tetracycline did bring down the parotid swelling for the first time in years, but even with treating the lyme, what damage that is done is done. My exocrine glands aren't coming back. If you let them go, it will be a full time job dealing with it and while I don't believe its from my phone (I've had dry eye since we had were rotary phones hung on the kitchen wall and dry mouth since 1985), it IS progressive. So, if you can get some meds and beat the inflammation out of your mouth and take care of your teeth NOW, you will be in better shape later.
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posted
Tiny comment - if you're talking Westchester, NY, yes there is a fairly busy airport there - Westchester County Airport. Most major airlines fly out of there.
FYI! ~webmeg Posts: 257 | From Connecticut | Registered: Oct 2007
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tailz
Unregistered
posted
When you suggest someone 'get help', that just isn't cool. If I'm feeling like I'm losing it, what should I do? Sit there quietly?
And why leave? So that I could drive 2 hours home, and then drive another 2 hours there next week or next month, only to wait 12 hours again and have to turn around and drive 2 hours home once more - all to eventually get a prescription that I can't afford anyway because my copay is $343?
If I was able to do all this, I'd be working so that I could buy a camper and live in an EMF-free zone somewhere in the mountains.
I was suicidal when I cold-turkeyed a benzo summer of 2006. I honestly didn't care if I survived, and that was scary. I just wanted to be free from Klonopin - free from the prescribing doctors - free from pain, sweats, insomnia, diarrhea, shaking chills. That's all that really mattered to me.
Of course, my luck would be that I lived and later figured out that I had Lyme and electrosensitivities. And here I go again - at the mercy of my prescribing doctors, begging for antibiotics this time - being looked at like I'm crazy when I bring up my realization that electromagnetic fields are key to my infections, whatever they are.
I don't know anymore. It doesn't help talking to anyone. There are specific people I'd like to talk to, but they all put there smiling secretaries on the phone or just ignore my calls.
In fact, unless I get angry first, I can't cry, and I always cried a lot - and easily. So I've no idea which part of my brain is damaged.
Sjogren's though is probably part of my problem, though I've no idea how to fix it. There aren't really any other doctors to see in this area, and if I can't handle a drive to West Chester, how would I handle a drive to another state? I was on one doctor's 6 month waiting list for over a year already.
Nancy, I had that tear test done a few years ago, and my one eye was off, but he didn't diagnose me with Sjogren's - but it's been years since I had that done. Minocycline was my biggest herx so far, too. In fact, in my 20's I was on mino for acne and I did really well on it then - no stained teeth or tongue or anything.
There's nothing to reverse it? I only have 3 cavities in my mouth - 1 in high school - 1 after my daughter was born - and 1 when I first started to spiral downhill in 2004.
Meg - my doctor is in West Chester, PA. Is there an airport there? How close is West Chester to Philly?
Tracy, I'm on the way to my therapist right now. I hope they get me in quickly - before I buy any more sexy shoes and boots;)
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Peacesoul
Unregistered
posted
My heart goes out to you. I think MANY people here have or have had the feeling of wanting to just end it. Threatening a Dr with it, well that is a whole different ball game. I've been sick 13 yrs and have seen too many dr's to mention without any solid dx. But never ONCE did I ever have ANY dr disrespect me to have me wait 12 hrs for an appoint nor did any dr ever look at me crosseyed. And believe me, I went to them with every dx in the book.
You teach people how to treat you. It's really all in the approach to have people take you seriously. If you want to threaten dr's with suicide and talk about Electric magnetic disease, well they are going to treat you poorly.
You've had a lot of trauma in your life and though I don't think sitting in therapy for 5 yrs will cure you, I think you need to look further into calming your soul for what seems like Post Traumatic Stress Disorder
I wish you much happiness and sending you good vibes. I do feel for you
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Tetracycline can stain teeth. It stained mine permanently when I was a child. I am not sure if this can occur in adults or not. Way too much fluoride can have the same effect.
D Bergy
Posts: 2919 | From Minnesota | Registered: Aug 2006
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posted
tailz, I know the doctor you're seeing and I always warn people away from him for the reasons you've stated. I had hoped the office had improved, but obviously not. If you'd like my LLMD's info again, please PM me. It can't be further from you than West Chester and my LLMD's patients actually get better.
-------------------- Getting older is when we would rather not have a good time than have to get over it. - Oscar Wilde Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Tailz- I believe there is a small airport near west chester, PA. I think its called brandywine airport, but its just for small planes used for corporate or personal flights.
Im sorry you had to wait until midnight to see this dr.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Cobweb
Unregistered
posted
Hey Tailz- I thought of you immediately when I nuked something in my little microwave-and the butter ON TOP OF the microwave melted !!!!
Is the outside of a microwave supposed to get hot enough to melt what's on top of it?
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Tailz-
Sorry that what I said offended. Maybe I didn't say it right.
I am not known for "sugar coating" things.
Take care Melissa
Posts: 3905 | From USA | Registered: May 2007
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tailz
Unregistered
posted
groovy2, wow - I think we're related. That sounds like something that would happen to me.
Tracy - most of the shoes I had to have gotten at Walmart. I think that says A LOT about Walmart;)
cantgiveupyet - evidently I can feel the radar from even small airports now. I should inquire about getting a job in national security, huh?
cobweb - my microwave is new and came with this place. I used to stand right in front of it, and when I tested it with the Trifield, it leaked. In fact, it leaks so badly that I can't be in my kitchen when it is on. And guess what I was eating when all of this was going on? - TV dinners.
Melissa - I gave it some thought, and I don't really care if anybody thinks I'm crazy. I figure 100 years from now I'll be a legend if I'm right. And though I may not have all the wrinkles ironed out as to which bug or bugs are involved and which fields exactly are involved, I do know that microorganisms and EMR/RF are somehow involved and the two work in sync, so I don't intend to drop any of this EMF stuff anytime soon.
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Peacesoul
Unregistered
posted
quote:Originally posted by tailz: Peacesoul - good for you.
Penn92 - Is it Dr. F?
I wasn't trying to be a wise-guy. I serious relate with you and feel sad for the pain you're going through. I was just trying to help with my opinion that we sometimes teach people how to treat us. As much as we want to lash out and tell the dr's what we know or think, we have to tread with caution and approach the medical community with calm so they listen. I think many if not most people here feel your pain. I wish you much love and health and I pray your pain leads u to a happy place The journey is long but we'll make it :-)
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
I wouldn't really threaten suicide either, as it may end you in a psych ward, that has alot of electromagnetic fields. Everywhere.
Acoustic neuromas are found in the IAC of the ears, base of the ganglion and furthermore, other structures of the base of the brain. A facial neuroma could be found in the nerves and salivary gland. You don't want an ultrasound, you would want much more testing, specifically an MRA WITH IAC of the inner ears, R and L. I know this because there was a high suspicion I had one, and had to go through the joyous testing of all. By the way, for more information
visit www.ana.com. Its a great board, for people who have them or believe that they do.
Please know too that your computer that you are using gives off some pretty creepy EMF's. You shouldn't use it if you can avoid it.
I would take artemisinin for the babs, and find a doctor who can keep his doors open during business hours and uh, close them sooner than midnight.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Tailz,
Don't know exactly what to say other than you I am praying for you.
I saw something last night about the 3 possible answers God gives us.
1. "yes"
2. "Not yet"
3. "I have something better in mind"
Hang in there. Try the art. There is a program for people who can't afford their meds.
I can't remember the name. Maybe someone here can post it.
Maybe it can help you get the mepron.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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