Wellness

[dooBdoo]

This is so heartbreaking. You're all so compassionate to share here with each other. I added this to the Lyme Disease thread, but then saw this one and wanted to post here, too. I've mentioned this resource before:

Please take a look at "PatientsLikeMe."

It's an active community of over 300,000 members discussing over 2,300 different conditions and the treatments, up-to-date research findings, etc. People can talk with each other, learn about symptoms, share personal experiences, communicate with medical professionals, and much more. They even help you find clinical trials in your locale for your specific needs.

~~~~~~

About the website: “Our brother Stephen was living with ALS and we thought, ‘there has to be a better way.’ There is. By sharing our experiences, we can all contribute new data that can accelerate research and help create better treatments. Our experiences can actually change medicine… for good.”

Jamie & Ben Heywood
Co-founders, PatientsLikeMe

http://www.patientslikeme.com/

~~~~~~

Here's just one page for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (their Forum currently has over 66,000 members):

http://www.patientslikeme.com/conditions/27-myalgic-encephalomyelitis-chronic-fatigue-syndrome

[betteb]

On 2/12/2015 Ford1224 said:

On 2/12/2015 poregirl said:

On 2/12/2015 Ford1224 said:

On 2/11/2015 newziesuzie said:

Ford I'm sorry. I've read some of your posts and know your DD's had a very very hard time. My take on the news is they want to give CFS better diagnosis and more attention and more respect for the people who suffer with it so I think it's good news.

We went over to the new apartment we are going to share to sign the lease and I noticed her teeth are turning black. I hope I am not watching my little daughter die.

a med could cause that.

I'll look into that. Thanks.

It's the doxycycline. It's a known side effect.

[LilacTree]

On 2/12/2015 annabellethecat said:

My daughter was diagnosed with this when she was 12 years old. We'd taken her to Children's Hospital. The Dr who was the Chief of Rheumatology and Internal Medicine,

It was a terrible time for my daughter. Over the years she's learned how to control it. When she feel an attack coming on, she knows she must step back and take care of herself. She recently had an attack.

There were times when she'd drop to the floor and couldn't move, (not just her legs). After a time she got her strength back and would go to bed.

Like I said, it was terrible until eventually we learned how to help her deal with it.

Anyone who THINKS they know about it by reading about it is about as wrong as they can be. Like many things, unless you either have it or live with someone who has it, you have no idea of how it devestates the person.

I couldn't have said it better.

[LilacTree]

On 2/13/2015 betteb said:

On 2/12/2015 Ford1224 said:

On 2/12/2015 poregirl said:

On 2/12/2015 Ford1224 said:

On 2/11/2015 newziesuzie said:

Ford I'm sorry. I've read some of your posts and know your DD's had a very very hard time. My take on the news is they want to give CFS better diagnosis and more attention and more respect for the people who suffer with it so I think it's good news.

We went over to the new apartment we are going to share to sign the lease and I noticed her teeth are turning black. I hope I am not watching my little daughter die.

a med could cause that.

I'll look into that. Thanks.

It's the doxycycline. It's a known side effect.

I looked it up and you are correct. I think she may know this, but I just sent her an email. Thank you!

[betteb]

Ford-There is not much that can be done about it, but at least you know the cause now Happy to help. God Bless

[jessa]

On 2/13/2015 dooBdoo said:

This is so heartbreaking. You're all so compassionate to share here with each other. I added this to the Lyme Disease thread, but then saw this one and wanted to post here, too. I've mentioned this resource before:

Please take a look at "PatientsLikeMe."

It's an active community of over 300,000 members discussing over 2,300 different conditions and the treatments, up-to-date research findings, etc. People can talk with each other, learn about symptoms, share personal experiences, communicate with medical professionals, and much more. They even help you find clinical trials in your locale for your specific needs.

~~~~~~

About the website: “Our brother Stephen was living with ALS and we thought, ‘there has to be a better way.’ There is. By sharing our experiences, we can all contribute new data that can accelerate research and help create better treatments. Our experiences can actually change medicine… for good.”

Jamie & Ben Heywood
Co-founders, PatientsLikeMe

http://www.patientslikeme.com/

~~~~~~

Here's just one page for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (their Forum currently has over 66,000 members):

http://www.patientslikeme.com/conditions/27-myalgic-encephalomyelitis-chronic-fatigue-syndrome

Thank you for this. I didn't know about this website.

[Jersey Born]

There is a book about CFS that I am planning to read, because it sounds fascinating:

http://www.amazon.com/Plague-Scientist%C2%92s-Intrepid-Retroviruses-Syndrome/dp/1626365652/ref=lh_ni...

All the best to those who suffer from this debilitating disorder.

[poregirl]

On 2/13/2015 lavendar said:

It's

Good luck and make sure he does the labs for celiac disease.

good idea. that stuff can wreak a lot of havoc & cause nerve pain.