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the NAME thing

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Lyme Disease
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bucci
Veteran Member
Joined : May 2006
Posts : 1477
Posted 2/14/2010 8:21 PM (GMT -7)
Hi Gang ..Happy St. Valentine Day to you all.

I'm wondering about the posting of the names of the doctors and even centers.

It is such a tricky area because we don't want to hurt any doctors that are already under the scope just for being lyme
doctors.
But we DO want to make sure someone else doesn't get burned or that someone DOES get healed by telling them the
good results.

And then every patient is different with different reactions to different therapies.
Some one could have even done 10 other styles of treatment and finally got well and attributed it to the LAST place they
went to.
But then you see so many who didn't get well untill after 2 yrs of treatment.
So where do we go with this. Everytime we POST a doctor name or center if somone googles that name it will come up.

all our posts will come up on google if we just punch in DR Spock or Dr Shivago. if we said something good or bad about
them on our post it show up on the google search. not just the forum google search.

We are trying to HELP each other and PROTECT each other as patients and our doctors.

so what the proper protocol here?
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CajunGrl
Veteran Member
Joined : Mar 2009
Posts : 4717
Posted 2/14/2010 8:25 PM (GMT -7)
We don't post doctor's names on this forum because of everything they have been through. Normally, we would allow homeopathic or natural, herbal, etc. doctor's names but we may have to rethink that. I will have a talk with 1bitten and see what she thinks.

How are you feeling today?
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bucci
Veteran Member
Joined : May 2006
Posts : 1477
Posted 2/14/2010 8:46 PM (GMT -7)
today was a good day , actually. right now I have a migrane coming on in the last 20 minutes or so . (go figure)

but an interesting thing to me is homeopathic remedies for myasms that treat depression. I took my new one today as instructed and I was out in the store got my supplies for the week and felt very peaceful and happy. even singing in the car.

The mental thing was lifted. my mind wasn't acting like chewing gum over everything I'm so worried about.

I have to tell you the money thing and having to go to my family and them scrutinizing my choice of doctor has been the most stressful part of all this. It also made me realize that my family has too much lyme symtoms so I am watching them and
getting so mad at them for putting me down and all i want is for them to come here and get the tests done.

so a whole can of worms is opened up. You need your family to be on same page or at least opened minded. Who wouldn't resent having to pay all this money (not that they HAVE to but when your sister comes to you for a HEALTH reason it's really MEAN . they want to make sure I'm not gonna get ripped off or end up worse from some quack out there
and theyjust got hit with this bomb a couple of weeks ago. Even though we are all watching my Dad for past 35 yrs deteriorate from a tick bite that he couldn't ge tmore than 2 weeks of antibiotics.

It really is tragic. I'm gonna get well and I really see how much I have to turn this over to God or this migrane will never go away. i am very very far gone down the road on this and just found out 2 months ago and it is a life time of lyme so I am on steroids . It freaks me out to hear about the next person coming on board starting steroids because I know this
lyme really backs youinto a corner. after a while I gotta let go of al the info and be grateful that i was able to walk for a couple hours today so I could get water for coffee enemas.

we gotta keep our sense of humor. and I think i got it back today instead of end of the world , I'm all alone syndrome.
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Deejavu
Veteran Member
Joined : Aug 2005
Posts : 4644
Posted 2/15/2010 4:40 AM (GMT -7)
Hi CG and Bucci,

I am also thinking we shouldn't type the full names of  homeopathic doctors as they could get the same treatment as other lyme literate doctors, just because they use alternative medicine, why should that make a difference?  From now on when I mention Dr. J's name I will type Dr. J. from Kansas instead of his full name.  

Bucci, when I was really sick and learned of Dr. J. from Kansas (ha!), I begged my family to pay for me to go to Kansas but no way!  They didn't understand lyme disease back then and they still don't.  They had the money to send me to Kansas but because of their lack of knowledge they didn't.  I also felt really alone.   I had no support  from my family and that really hurt me.   Even though I am all better, I still don't bring up "lyme disease" to them.   They just don't get it!

Anyway, I'm rooting for you Bucci! Keep up the good work and know that we are here for you.

Denise

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bucci
Veteran Member
Joined : May 2006
Posts : 1477
Posted 2/15/2010 12:28 PM (GMT -7)
Thanks, Deejavue,

I sent for Dr J book and mustard bath so it should be here by end of week.

I am happy about being here too. I am on heparin now and it has made a big difference already.
I didn't even know how thick and quagulated my blood was till the did special tests for that. I feel I am getting
great care here.

Also, I know that other lyme docs now are trying this EDTA IV therapy BEFORE putting the IV zetromax.

From what I know if you are in antibiotic treatment and going that route the big problem is in breaking into the cells.

so I gotta go but going good
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merrygirl
Veteran Member
Joined : Jun 2007
Posts : 702
Posted 2/15/2010 3:26 PM (GMT -7)
i had a great llmd. I mean awesome aggressive and took my insurance.

Her name was posted all over a website and to make a long story short..... "they" went after her. she longer is practicing.

so I have been screwed ever since.

so honestly it DOES matter wether or not you post names.
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Deejavu
Veteran Member
Joined : Aug 2005
Posts : 4644
Posted 2/15/2010 4:01 PM (GMT -7)
Hi Bucci,

That's good that you are getting Dr. J's book, yes, he makes a pre-mixed mustard foot bath but I just mix cayenne pepper and dry mustard powder in very warm water for my footsies.  And always dry skin brush my feet before soaking to open up the pores.

Merrygirl, that's a shame your doctor's name was posted all over a website.  Perhaps these doctors should not have their own website (I don't know if that applies to your prior LLMD) but many doctors do have their own site.  I still think doctor's full name's should NOT be spelled out to protect them, conventional or alternative.  Just my opinion.

Denise

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pepphell
Regular Member
Joined : Jan 2010
Posts : 134
Posted 2/15/2010 6:10 PM (GMT -7)
Denise, now that you are well and have your lyme in remission does that mean you still take care and don't eat sugar or wheat products?
if my life is going to be like this, i have really cause for concern. I've given up almost all the foods that I eat. :( Can't go to a restaurant or drink anything. after all how long can lime juice sustain you? I am already sick and fed up of this food regimen my doc has put me on. but i guess hes onto something with this.
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bucci
Veteran Member
Joined : May 2006
Posts : 1477
Posted 2/15/2010 7:37 PM (GMT -7)
Merry,
You doc got shut down because they were saying bad things about him on the web or good things. ??
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CajunGrl
Veteran Member
Joined : Mar 2009
Posts : 4717
Posted 2/15/2010 11:44 PM (GMT -7)
We actually never allowed doctor's names here. Some member's would get very angry when I would edit a doctor's name out but I felt it was for the best after everything they go through. We NEED our doctors!

As far as alternative doctor's names being posted here, most of them have websites because many people do not know how to find them. That's why the names were allowed here and for other reasons too. But, since this recent problem accured, I think we should just use initials from now on, just like we do with our LLMD's. Members should NOT post their treatment protocols online either whether it be on this forum or anywhere else. If you want to protect your doctor, do not post your treatment protocol. That's just my opinion by the way.
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