I had a question about the Babesia testing b/c it is something I am going to do and I just needed more info! The receptionist connected me directly to the head Dr. himself! He was wonderful and answered any and all questions I had for him! He was very compassionate and definitley seems to know what is going on! Just wanted to share that with everyone!
So if you have any questions about their testing they are more than happy to answer any questions you may have!!!
Have a great day!
Take care, Onmyway
[ 04. December 2008, 07:09 PM: Message edited by: onmyway ]
Posts: 131 | From Georgia | Registered: Oct 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I don't think you should have his full name in the post?
But I'm glad the call with him went so well.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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It is a bit unclear at times. This is how I understand it.
As with published authors of books and those with web sites, the doctors at the labs are quite visible on their web sites. They are fine with others knowing of their existence, but it might be nice to double check with them if it's okay if we share in posts like this. Or we can just post the link and say the microbiologist is happy to talk to people.
His name is clearly on their web site as someone to call for questions.
Normally, LLMDs names are not used in posts so to protect their privacy and guard (somewhat) against harassment from the medical groups that are against treating chronic lyme.
However, if a doctor/author has gone public with books, articles, etc. and discussion relates to what is there for all to see - then if any part of that is quoted, the name has to appear with the excerpted material for credit.
posted
I personally think that small labs will be overwhelmed by every patient calling them and asking the same questions. It would be better to work thru your doctor, assuming you have a good lyme doc.
Posts: 8430 | From Not available | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Yeah, it'd be sad to wear out the good guys. But, sometimes, it works for short call.
I called and spoke with this doctor recently for someone wondering about brain tissue testing. He was very cordial and quite happy to spend 2 minutes explaining some things.
I had previously gone over the web site so I knew the basics but he was very pleased to be able to help a patient. Some doctors don't even know about these labs or what questions to ask - and some doctors simply will not do it.
So, I am very glad that there are few researchers around who will talk to patients who have done some preliminary homework first.
It also gives me such great hope that someone is really working on figuring out the puzzle. Someone real.
It's a good idea to first talk with customer service people. That's what I did and after they answered a few questions, they offered to have the microbiologist talk with me. It was a very positive experience.
posted
Did not mean to upset anyone! Was trying to be positive! He actually asked me who all was talking about the lab! I told him forums etc.. He was actually very happy to hear that!
So think what you want I edited my post and won't post about this matter again!
Take Care, Onmyway
Posts: 131 | From Georgia | Registered: Oct 2008
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posted
I edited post!
Posts: 131 | From Georgia | Registered: Oct 2008
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DebAz
Unregistered
posted
squashed again.
Poor girl..
I am getting tired of reading posts to learn and seeing it all end on someone coming in and picking them apart or their post to the point they just give up or disappear or run away..
posted
Talked to Dr K today about the billing for hubby. Told me he was literally in the lab 24 hours yesterday. Is taking a week's vacation next week. Think he is trying to hire some additional staff.
As Keebler said, look at the website first and then if you still have questions call the lab. Talk to whoever answers the phone -- could be Amy of Dr K himself. If he is too busy he will say so and offer to call back. Once when he didn't call back the next day I called again on the following day. Busy people can lose messages etc.
Anyone in this type of business has to expect to get a number of phone calls from patients and docs alike. The way I look at it they are selling a service and that is just part of the job.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I agree this forum has become quite miserable! I know with our disease some moodiness and anxiety,sometimes causes confrontation for no reason! Ask my husband!
However, I think you are forgetting the real reason we are here! We are here to support each other!
I am really disappointed in the behavior and caddiness I have seen on this board! I am a member on the 3 main boards and this by far has to be the worst!
I saw tid bits of something that was going on with Dizzyup amd I am sorry but she has been super helpful to many on here! I personally think that if you disagree with what one has said than you are the one that needs to go away!
We have moderators that are put in place to do their job!! I think if anything needs to be said it is them! If they say nothing than maybe you are over reacting!!
I will not be posting on this board any longer! The main board that stands true to what it is supposed to do is HW!!
I am not trying to be disrespectful I am just calling as I see it!
There are a few of you that PM me! Please still do so! I would really like to keep in touch with you! Especially since some live close by and I need to keep in touch and let you know when our local Under Our Skin Showing will be.
Everyone please take care! As a Dr. Once told me Surround yourself around people who support and understand your situation! Otherwise if they don't get rid of them! Period!!
Onmyway
Posts: 131 | From Georgia | Registered: Oct 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Actually, disturbedme was well within reason to bring this up. Newcomers may not realize that LN asks for doctors names not to be posted and making the distinction for the times when that might be okay (such as to cite authors' works or others in the public eye who are not LLMDs) . . .
I think it is good to be able to discuss it - and know that the reason for doing that is to protect the very doctors who are trying to help us.
They have been harassed - often - and any sort of protection of privacy we can offer is more than reasonable.
Even with a lab. Some may want to be more hidden; others may not. Someone may have seen the name but not realized that they had a web site with all that detail, etc. We don't want labs harassed either.
I did not see anyone making a big case. disturbedme was helping in pointing out the general rule here. That is a good thing.
lou's point about being careful not to call at just the drop of a hat is a very good reminder, too. And, for those with doctors, it can be good when they can talk to the lab - getting it straight from the source. It's all meant to not stress the professionals who are working for the greater good. It's good to be reminded of that as we make our way through all this.
posted
Thank you I totally undrerstand and I think it was very well put!
I have been @ this for 2 years so I know the rules.
I was very happy after I spoke to the Dr. And he was happy that word was getting around. I wanted to share it all with you!
I was transferred to him by a woman who said "let me pass you on to the Dr. Who knows a lot more about this than I". The Dr. Also told me if I ever had any questions in the future please call! So I felt I was ok making that post!
I appreciate your time and explanation!
Absolutely no hard feelings here! Boy we have so much better thiungs to do with out energy than fuss!!
Happy Day!
Onmyway
Posts: 131 | From Georgia | Registered: Oct 2008
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I just spoke to Clongen Labs and it was Amy! I explained to her the isues we had about my post!
She said that they are more than welcome to answer any questions including Amy or Dr. Kilani!! She said they want people to call them no matter what!!! She said they were totally fine with phone calls and are not against the lab being exposed! They are prefectly fine with this being discussed on the boards!
I just wanted to clear that up.
I appreciate your attention to this matter!
Thank You, Onmyway
Posts: 131 | From Georgia | Registered: Oct 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Just got my son's Lyme Western Blot results from Clongen Labs today. He was positive, CDC positive even.
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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