Search found 167 matches

by phyfe
Fri 1 Aug 2014 21:27
Forum: General Topics
Topic: Patient-Formulated Lyme Disease Survey Draft
Replies: 357
Views: 41258

Re: Patient-Formulated Lyme Disease Survey Draft

I also think Muscle weakness should go into the general list of symptoms. But, it is quite often a symptom of a neurological issue related to a demyelination in the CNS, both for the spinal cord and brain. ie. so aside from ALS symptoms, it is also an issue for MS and myelitis diagnoses. Also thing...
by phyfe
Fri 1 Aug 2014 21:17
Forum: General Topics
Topic: Patient-Formulated Lyme Disease Survey Draft
Replies: 357
Views: 41258

Re: Patient-Formulated Lyme Disease Survey Draft

duncan wrote:Phyfe, Would you please add Muscle Weakness under the general list of Lyme symptoms?
Added. :)
by phyfe
Fri 1 Aug 2014 21:12
Forum: General Topics
Topic: Patient-Formulated Lyme Disease Survey Draft
Replies: 357
Views: 41258

Re: Patient-Formulated Lyme Disease Survey Draft

Were you ever diagnosed with Lyme Arthritis?__No __Yes How was your diagnosis made: __Self diagnosed __GP __Rheumatologist __LLMD __Other What tests were used in the diagnosis? __Physical exam __Blood tests __Synovial fluids __PCR __Elevated WBC Were you ever diagnosed with refractory Lyme Arthriti...
by phyfe
Fri 1 Aug 2014 5:35
Forum: General Topics
Topic: Patient-Formulated Lyme Disease Survey Draft
Replies: 357
Views: 41258

Re: Patient-Formulated Lyme Disease Survey Draft

dlf wrote:Q Fever (Coxiella burnetii)
Thank you!
by phyfe
Fri 1 Aug 2014 5:34
Forum: General Topics
Topic: Patient-Formulated Lyme Disease Survey Draft
Replies: 357
Views: 41258

Re: Patient-Formulated Lyme Disease Survey Draft

Camp Other wrote: __Ehrlichia
__Tickborne Encephalitis (TBE) Virus
__Relapsing Fever (e.g. B. hermsii in US; other soft-bodied tick Borrelia based on region)
__Powassan Virus (Deer Tick Virus found in US)
Thanks!
by phyfe
Fri 1 Aug 2014 0:43
Forum: General Topics
Topic: Patient-Formulated Lyme Disease Survey Draft
Replies: 357
Views: 41258

Re: Patient-Formulated Lyme Disease Survey Draft

duncan wrote:Have you ever been diagnosed with other tick borne disease? __No __Yes
If Yes, please check off the appropriate diseases:
Anaplasmosis
Babesiosis
Bartonella
RMSF
Tularemia
Borrelia Miyamotoi
Other
Got it! Thanks!
by phyfe
Thu 31 Jul 2014 19:46
Forum: General Topics
Topic: Patient-Formulated Lyme Disease Survey Draft
Replies: 357
Views: 41258

Re: Patient-Formulated Lyme Disease Survey Draft

Latest update (I already have a word file on this survey--thanks anyway LHCTom): PATIENT-FORMULATED LYME DISEASE SURVEY-Working Copy Line 1) Question 1: Have you ever been diagnosed with Lyme disease? Yes___No___ Line 2) Question 1a: If yes, what Species of Lyme (Borrelia)? ____Borrelia Burgdorferi ...
by phyfe
Thu 31 Jul 2014 5:58
Forum: General Topics
Topic: LymePolicyWonk: Patient-Powered Research and Lyme Disease
Replies: 132
Views: 20367

Re: LymePolicyWonk: Patient-Powered Research and Lyme Diseas

Please do me a favor and put all the additions for the survey on the other thread. It will be much easier for me to keep track of everything. Thank you all for your input! :)
by phyfe
Thu 31 Jul 2014 5:56
Forum: General Topics
Topic: Patient-Formulated Lyme Disease Survey Draft
Replies: 357
Views: 41258

Re: Patient-Formulated Lyme Disease Survey Draft

While I decided to place more of my input here on the draft, I noticed that members were continuing to post ideas for the survey on the patient-centered thread. Are we going to continue to post about the survey in two separate places - or did I miss something and have the two separate threads trans...
by phyfe
Thu 31 Jul 2014 5:09
Forum: General Topics
Topic: Patient-Formulated Lyme Disease Survey Draft
Replies: 357
Views: 41258

Re: Patient-Formulated Lyme Disease Survey Draft

dlf wrote:
For now just one more which applies to the rash section to go after line 16, so I guess it would be 16.1
Did you take a photograph of your rash? Yes__________No__________
Got it! Thanks for your participation. :) And thanks for the nice words.

I'll leave the rest to Duncan.