LymeNet Flash: Symptom/treatment trackers

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»	LymeNet Flash » Questions and Discussion » Medical Questions » Symptom/treatment trackers

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Author

Topic: Symptom/treatment trackers

cocowyo
LymeNet Contributor
Member # 36286

posted

I've been using the Patients Like Me website to track symptoms and treatment for a couple of years. I really like it and find it easy to use.

They don't have something super specific for Lyme yet, but I can keep track of general symptoms (achy, tinnitus worse, poor sleep, etc.) with their "Instant Me" feature.

My screen name there is cocowild. I have no affiliation with the company.

EDIT: It was brought to my attention that some people are not comfortable with PLM's privacy policy. Please read it thoroughly before joining.

Here's a link:
http://www.patientslikeme.com/

[ 04-29-2012, 07:52 PM: Message edited by: cocowyo ]

--------------------
Clinical dx/muscle tests
+ CBS upregulation, parasites, babs
- bart, KPU, yeast, mold

Blood tests
MCTD (autoimmune): +RNP
MTHFR - homozygous C677T
CD57 - 192

Diet - modified paleo

Posts: 125 | From Rocky Mountains, USA | Registered: Feb 2012 | IP: Logged |

TxLymie
LymeNet Contributor
Member # 20847

posted

I just signed up. I like the trearment tracker. I've been keeping my own but I like the fact that this one will show you charts etc. Thanks for posting!

--------------------
TxLymie
IgG-Negative
IgM - Postive bands 23 and 41

Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori

Posts: 297 | From Houston | Registered: Jun 2009 | IP: Logged |

fourwinds
LymeNet Contributor
Member # 14114

posted

I looks like a good tool... but I am wary about my personal information being "out there"...

Have you read their "privacy policy"?
http://www.patientslikeme.com/about/privacy

Plus this:

http://partners.patientslikeme.com/about/

About PatientsLikeMe

PatientsLikeMe is the first and only online data-sharing platform for patients with any

condition. Our products and services offer industry partners unprecedented access to

real-world data, custom research capabilities, and patient participation in clinical research.

Our team has deep expertise in utilizing patient-reported data to solve industry problems and achieve research and commercial objectives.

(Hmmm... sounds like the drug companies may be involved; i.e. "industry partners" -- who are these industry partners??)

Who knows who they may eventually sell it to or who's tracking what... sigh!

I guess I'm just one of those "paranoid" individuals!

Posts: 396 | From EAPennsylvania | Registered: Dec 2007 | IP: Logged |

cocowyo
LymeNet Contributor
Member # 36286

posted

@fourwinds: Thank you for mentioning the privacy policy. I've been using PLM for so long that I don't really think about it.

I can see how people would be uncomfortable with the privacy policy and I will edit my original post so people can make an informed decision.

@TxLymie: Thanks for letting me know you joined. I hope you find it helpful :-)

--------------------
Clinical dx/muscle tests
+ CBS upregulation, parasites, babs
- bart, KPU, yeast, mold

Blood tests
MCTD (autoimmune): +RNP
MTHFR - homozygous C677T
CD57 - 192

Diet - modified paleo

Posts: 125 | From Rocky Mountains, USA | Registered: Feb 2012 | IP: Logged |

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