"under our skin" dvd

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georgiagirl
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Date Joined Oct 2007
Total Posts : 1172
   Posted 7/23/2008 4:23 PM (GMT -7)   
Has anyone here seen this dvd? It just premiered in NY not to long ago.I found it very interesting. It discuses MS, parkinsons disease, and several other diseases and how they can be linked to lyme disease. One lyme dr. on the dvd even stated that every patient that came to him with an MS diagnosis and parkinsons diagnosis tested posative for lyme disease. I myself got three negative results before I was tested at igenex lab. That's when I got a posative and started treatment. I am sooooo much better now that I am on LD treatment.
You really should watch this! You can order it through "The Turner Foundation".  

D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 7/24/2008 2:32 AM (GMT -7)   
I haven't seen this video or heard of it but my neuro ran me thru those tests in my process. I did not test positive for it in any possible way and I am dx'd MS. So I'd be very skeptical of any blanket statements like "the dvd even stated that every patient that came to him with an MS diagnosis and parkinsons diagnosis tested posative for lyme disease."  I find these kind of info video's damaging in the long run. Ticks can't be blamed for all the ills of MS... that's a major discount about a major disease.
 
 
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


georgiagirl
Veteran Member


Date Joined Oct 2007
Total Posts : 1172
   Posted 7/24/2008 8:58 AM (GMT -7)   
D,awesome,
Did you have your testing ran through a lyme lab like igenex or fry lab? The testing at these labs are much more specific. That is where I finally got my posative test. They also test for co-infections like bartonella and mycoplasma. Keep in mind that you may not always get a posative test even though you still have it. It is a clinical diagnosis. I was also diagnosed with MS before I found out the real truth. I am doing so much better now. I got LD and co-infections from a mysquito bite so it's not always contracted from ticks. Most neurologists know nothing about LD and co-infections. No one knows what causes MS. That doesen't seem strange to you? I would check out all my options before i'd settle with being sick and in pain for the rest of my life.

BDub
Regular Member


Date Joined Mar 2008
Total Posts : 34
   Posted 7/24/2008 1:03 PM (GMT -7)   
no , not really D'awesome. Testing for Lyme is like flipping a coin. The movie is great, alot of people that have MS, at one time had lyme.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 7/24/2008 1:36 PM (GMT -7)   
Hey Everyone

Thanks for the help and suggesting this video, however; this is ancient history....ms vs lyme...and it's better NOT debated here. Please take lyme to the lyme board and leave the ms forum to it's purpose of supporting those with ms or suspected ms. As said here before many times...if we feel there is a need for a member to be referred to the lyme forum we will gladly redirect them there. People with ms go thru much stress, struggle and expense to FINALLY get the dx of ms and coming here to tell them they don't have it or that they originally had lyme which led to ms is a bit of a slap in the face. Let's (again!) agree to disagree on this topic and it's sister ideas and move on. Please don't continue to respond to this thread.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


georgiagirl
Veteran Member


Date Joined Oct 2007
Total Posts : 1172
   Posted 7/25/2008 6:30 AM (GMT -7)   
Hello again!
If anyone has any questions please feel free to visit the lyme disease forum. I will be glad to help!

tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 7/27/2008 6:01 PM (GMT -7)   
Rhonda,

I respect your reasoning about us with MS being stressed, spending lots of money getting diagnosed etc, I've been there. But I do have a question about where I belong. I have MS and Lyme disease, and there is much I'd love to share on the MS board.

This disease is emotionally devastating, and I'm hoping that information would be looked at positively rather than negatively.
Please advise if I'm welcome here to talk about what lead me to my current treatment.

tory

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 7/27/2008 6:58 PM (GMT -7)   
Hey Tory

Use u'r best judgement of course, but be aware that this is a battle already faught and no one is interested in reviving it. Having lyme and ms is prob very difficult (to say the least!) so of course u'r experiences are welcomed. The issue at hand here is the arguing back and forth as to whether or not people with ms REALLY have ms. No one here wants to be told they 'really have lyme and not ms and just aren't able to figure it out'. No, no one's literally said that, but in essence that is what comes across.

As far as where u belong...well u seem to belong in both places. For example....I have GERD and IBS....and i post in both places as i want. U don't have to have a dx for any of these diseases to post tho...just an interest and willingness to provide support if needed. No one is unwanted or going to be told to go someplace else...that's not what the ms board or Healing Well is about. We just want to eliminate or nix any fussing or bickering that arises. Ok?

Welcome and post as u want.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 7/28/2008 6:19 AM (GMT -7)   
Thanks Rhonda,

I certainly don't ever want to force anything on anyone. It took me a long time to even consider lyme disease and can understand anyone with MS turning away from this.

I guess I would like to be around for any questions someone might have. With that said, I appreciate the resistance and even the anger some have with this disease. It's not my intention for that, ever.

Again thanks for the welcome. I'll see if I find a place on your board.

tory

rhodeislandlyme
Regular Member


Date Joined Oct 2006
Total Posts : 50
   Posted 7/28/2008 2:45 PM (GMT -7)   
I don't deny that I have MS.
 
I do, however know NOW what caused it -- Lyme.  I am now in treatment and hopeful.
 
If I could have read messages such as these 8 eight years ago, I would perhaps be healthier than I am at present.  The unreliable tests for Lyme that I had (several, always negative) convinced those former docs of mine (and myself) that I was negative for Lyme when in fact the opposite was true.
 
Knowledge is power.  I believe it is wrong to hold this information back from others who may benefit from it.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 7/28/2008 4:09 PM (GMT -7)   
Ok, no one is trying to hold any knowledge back from others who may benefit from it....HOWEVER....we've BEEN THRU THIS BEFORE. We DO have a lyme forum. Please use that forum for lyme and this one for ms. It's not that u can't post here or there, but please make it relevent to that forum's use. This is not the place to debate or slip in messages under the guise of helping others. Please....i've asked...i've been quite nice...now once more let this rest and let's get back to helping those here who need it....with ms. We are quite capable of redirecting others to the lyme forum and don't need the lyme police directing traffic here. Enuf is enuf. U'r plight is understood and appreciated, but there is more going on here and it needs the attention that u'r thread is garnering. Thanks for taking this to the lyme board and not posting here again.


rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 7/28/2008 10:00 PM (GMT -7)   

Please note that you have been asked to NOT post again by a moderator.  If you have ever spent any time here, you would read that we have asked people to please check for lyme disease and we have asked them to read the lyme board as well.  I have spent a lot of time on the lyme board reading threads.  I am very supportive of anyone with chronic lyme as I have read the problems with CDC and subsequent problems that occur with insurance.  I realized that many of you have gotten MS from the problems caused by Lyme disease.  Many of us just have MS.  I have read with total horror and sympathy what you go through.  I feel very strongly that I just have MS.  I feel that MS is a disease that has many poorly understood causes.  I tested negative through igenex and I don't have many of the lyme symptoms of infection.  I have been very very stable in my MS for the last 15 months.  I have a full time job, I have two boys and a husband that I do many things with and for.  I have read how with Lyme, you can flare as often as once a month.  That is just not me.  So, when I hear that Lyme causes MS, it is very hurtful.  You just cannot generalize things like that.  Maybe you got MS from lyme, and maybe I got MS because my immune system just went haywire.  I happen to be responding quite well to the progression therapy I am on and when someone suggests that my disease is basically a symptom of another disease that I am too stupid to treat, that really is very offensive.

As a moderator, I am also asking, with the utmost respect, please don't post on this thread again.  Let this go.  You have made your invitation.  If we have members that have questions, they will go to the Lyme board with them.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 7/29/2008 4:58 AM (GMT -7)   

Good job Mods with sticking to your guns............there are 2 forums and trying to convince people they have been misdiagnosed is not the purpose of your forum.

Hold the line.  You are doing a great job.

Kitt


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 7/29/2008 5:29 PM (GMT -7)   
Well said, Gretchen, thank you and Rhonda for your limitless patience. Ditto on Kitt's note.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 7/30/2008 9:17 AM (GMT -7)   
.....Ditto as to what has been said by Kitt and other mods....
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
                                    Donate at  www.healingwell.com
 
Moderator @ Alzheimer's,Co Mod @ Anxiety/ Panic,Co Mod @ Crohns 
 
                                    FIGHT the FIGHT with all YOU HAVE
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