Important video that pertains to Fibromyalgia

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nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 1/21/2010 3:21 PM (GMT -7)   
Please watch this, and pass it on....everyone should know how easy it is to catch Lyme disease now and also what it can do to you (including triggering and/or mimicking fibromyalgia!):


Pass it on to people you care about....especially if they have kids!
 
 
I know you are trying to be helpful, but this is using scare tactics.  We are here for support of fibromyalgia, not Lyme.

Post Edited By Moderator (Sherrine) : 1/22/2010 9:35:04 AM (GMT-7)


Nana Monster
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Date Joined Jul 2009
Total Posts : 952
   Posted 1/21/2010 4:01 PM (GMT -7)   
Nasa,
That's pretty darn scarey. I've lived in or around woods my whole life. I have 2 acres now and so does my son. I'll pass
this along to him as he has early onset Parkinsons (he's 36). It might be the Lyme but he's pretty sure the telangectasia is
the culprit.
Nana Monster

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/21/2010 4:08 PM (GMT -7)   
Thanks Nana....yes it is a scary video. We have a lot of wildlife where we live (close to the foothills of the San Gabriel mountains): raccoons, skunks, possums, tons of birds, plus the neighbor's cats who prowl through our yard all the time....we're going to be a lot more careful from now on when our kids play in the backyard!

I'm so sorry to hear about your son, he's awfully young to have such a devastating illness!

Take care,
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


Nana Monster
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Date Joined Jul 2009
Total Posts : 952
   Posted 1/22/2010 5:02 PM (GMT -7)   
I have bird feeders right next to my front steps which I think I'll be moving soon. I have squirrels coming up next to the steps also.
The deer come up to my deck out back to feed from the scrub and crabapple trees. Every now and then I get a skunk trying to get
into my trash. I never realized just how animals could carry this disease.

On a semi-lighter note...My son, who thankfully sees humor in everything like his Mom, got pulled over today. The cop seen his
head bobbing and thought he was under the influence and he shocked the guy when he said he had early onset parkinson's and
was having a bad day and was on his way home from work. The guy told him "Sorry" and told him to go home and get some sleep.
He told me he kinda felt like a bobblehead doll.

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/22/2010 7:53 PM (GMT -7)   
Nana, sorry to hear that your son was having a bad day, but it *is* kind of funny that the cop thought he was drunk! The poor cop must have felt bad when he realized his mistake though.... :)

Speaking of moving bird feeders and Lyme disease, I was surprised that to learn that Lyme can even mimic ALS (Lou Gehrig's Disease)...it's in an article published online yesterday in the San Jose Mercury News:

www.mercurynews.com/columns/ci_14241649?nclick_check=1

The article mentions that one of the doctors has regularly seen lots of people originally diagnosed with Parkinson's turn out to have Lyme disease instead....is your son sure there's no chance he has Lyme disease? It wouldn't hurt to rule it out....just in case he wants to be tested, the Western Blot test is more sensitive than the standard Lyme ELISA test, and one of the best labs to analyze the results is Igenex lab in Northern California. Lyme blood tests are notoriously inaccurate and difficult to interpret.

I was sure I didn't have it when I was tested for Lyme. I was tested because an online friend of mine insisted, and I just knew the tests would be negative. Surprise, surprise! I DO have Lyme disease!

Take care,
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40572
   Posted 1/22/2010 8:46 PM (GMT -7)   
Hi Nasalady,
 
We appreciate your concern for lyme disease, but this is a fibromyalgia forum and we are working through this syndrome here the best that we can.  It is hard enough dealing with this without having lyme disease brought upon us. 
 
I am sure that there are many ways to contact lymes, but there are many ways to use prevention tactics too.  Which I am sure is very informative.  But please try to keep the lymes information on the lymes forum.  I know that it can cause fibromyalgia symptoms, but not all of us got our fibromyalgia from lymes. 
 
You are more than welcome to post here, but please limit your posts to fibromyalgia subject.
 
Thank you,
 
Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/22/2010 8:50 PM (GMT -7)   
Sure, Karen....I don't think I ever suggested that everyone here got fibro from Lyme disease (I certainly didn't intend to!). I'm sorry if it was interpreted that way.

I just thought it was useful info for this forum because even my rheumy, who is quite a skeptic, says that Lyme disease triggers fibro. So there is an important link here.....and a LOT of people do get fibro from Lyme disease! I'm a little surprised at your desire to keep this info off this forum.

As to my last post, I probably should have tried to contact Nana Monster directly but I was just replying to her last post about her son. Sorry if it offended you.

JoAnn

P.S. I have high hopes that when I'm done taking the antibiotics for MY Lyme disease, that my fibromyalgia will go into remission. I would think that is an EXTREMELY important fact to share with my fellow fibro sufferers, because if there's any chance at all that they could get better, I bet they'd like to know about it!

That is all I have to say on the subject.....again, sorry if I offended anyone.
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 1/22/2010 9:04:11 PM (GMT-7)


Jeannie143
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Date Joined Apr 2004
Total Posts : 6056
   Posted 1/23/2010 7:39 AM (GMT -7)   
I don't want you to get your hopes up but we have never had a poster here who has actually "gotten over" fibro. Once a fibro, always a fibro... My mom's fibro developed from her Lymes, mine has been with me my entire life. There is no rhyme nor reason as to why or how we acquire fibro.

Unlike Lymies, who have hope for a cure or at least a remission, we just have to carry on. Wishing you the best, but I concur with Karen.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/23/2010 10:47 AM (GMT -7)   
Dear Jeannie, I understand. You're absolutely correct to say that if I do have fibro that was triggered by Lyme, which is what my rheumy thinks, I won't "get over" it. It might go into remission, but that's not at all certain.

There is a (slight) possibility that my fibro is not true fibro but Lyme mimicking fibro....if that's the case I could get better. But again, chronic Lyme is very hard to treat.

I have so many diagnoses....I don't know what the outcome of my Lyme treatment will be. I just hope that SOME of my diseases go into remission or go away entirely.

You should also know that one of the main reasons I posted that video was to warn parents to watch their kids, look for ticks, watch out for possible tick-bearing animals. I know that's "off topic" but I was doing it as a public service announcement.....most of us on this forum are parents, if not grandparents. In the video, the story of that little girl Victoria broke my heart.

Take care,
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 1/23/2010 11:09 AM (GMT -7)   
JoAnn, we talk about having all the tests run before fibromyalgia can be diagnosed properly.  We direct people to Fibro 101 and the thread What Else Could It Be and Lyme is on several of those lists....along with other illnesses.  I have told members about IGeneX Labs in Palo Alto and I have sent members over to the Lyme forum if they want more information.  So, Lyme is covered on this forum.  (Is fibromyalgia covered like that on the Lyme forum?)  But, the bottom line is that this is the fibromyalgia forum.  Your Lyme discussions should be kept on the Lyme forum.  All HealingWell members have every opportunity to visit any of the forums and can read all about Lyme on the Lyme forum.  But, I do know you are just trying to be helpful.
 
You can have fibromyalgia without having Lyme.  Actually, that's the case to those of us who have been checked out.   Also, did you know that 15-50% of people diagnosed with Lyme actually don't have it but have fibromyalgia?  They are given medications that they don't need and that can harm them.  I was one of those people.  They didn't have testing when I came down with fibro back in the 1980's but Lyme was being talked about.  My doctor put me on Tetracycline and I ended up with such severe ulcerations in my colon that I had to have it totally removed.  I now live with an ileostomy.  The medicine exascerbated my Crohn's disease and, as it turned out, I didn't have Lyme to begin with! 
 
I hope you understand why we asked you to stop posting about Lyme on the fibromyalgia forum.  I also hope that you start feeling much better soon and it helps your other problems.  I'm now locking this thread.  Any more posts on here will be deleted.  Thanks!
 
Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 1/23/2010 11:25:50 AM (GMT-7)

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