tag:blogger.com,1999:blog-1157308683268068679.post4333638577435667968..comments2023-09-15T02:48:08.394-07:00Comments on Victorious Vixen...craftivism for + change: Press Kits, Vampires, Giveaway, Oh my!Unknownnoreply@blogger.comBlogger41125tag:blogger.com,1999:blog-1157308683268068679.post-62965519352442433242010-06-19T09:28:45.626-07:002010-06-19T09:28:45.626-07:00I am a HUGE-MONGUS fan on Facebook and love to che...I am a HUGE-MONGUS fan on Facebook and love to check out all of your creativity on there!!Crystal Dixnoreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-82857107801405402092010-06-19T09:24:18.406-07:002010-06-19T09:24:18.406-07:00Awareness is being spread in our area too!! We ju...Awareness is being spread in our area too!! We just had our first annual Lyme Awareness Walk in the High Desert (Victorville/Hesperia/Apple Valley area)in Southern California!! Supposedly an area where Lyme does not exist!! Ya' right!! It was a huge success and so many people were amazed and informed!! Prevention can save lives!!Crystal Dixnoreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-90102450736676890402010-06-19T09:19:04.812-07:002010-06-19T09:19:04.812-07:00Hey there!! My name is Crystal Dix, and I have ha...Hey there!! My name is Crystal Dix, and I have had Lyme and a bunch of co-infections for 20 years!! I have had Lyme longer then I haven't had Lyme!! It has taken so much of my life, BUT now maybe it will give me something back by giving me a chance to win this awesome wallet!! LOL!! It's about time I reap some kind of reward from this yucky disease!! Don't ya' think?!?! LOL!!Crystal Dixnoreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-50401495703894887552010-06-19T02:29:42.475-07:002010-06-19T02:29:42.475-07:00I had no idea it was that serious... This really o...I had no idea it was that serious... This really opened my eyes!<br /><br />I wish more people were like you and Candice, helping other people realise about this disease.<br /><br />x<br />Claïs<br /><br />PS Here's the link to my tweet. =)<br />http://twitter.com/Claiis/status/16534436356clais_lemmenshttps://www.blogger.com/profile/02562039370531237273noreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-23731491799754697292010-06-19T02:11:39.650-07:002010-06-19T02:11:39.650-07:00I first became ill with the first of several pneum...I first became ill with the first of several pneumonias in 1985. I'd had a bout with "ringworm" on my left bicep that I didn't report to anyone since I'd be forced off work until it cleared. <br /><br />Blood work done for my "walking" pneumonia showed that I had chronic relapsing Epstein-Barr (aka "mono"). No treatment other than rest.<br /><br />In '89, I was diagnosed with Fibromyalgia as a consequence to a bad rear-end accident.<br /><br />In those dark-ages of Fibro, nothing prescribed worked.<br /><br />An a retired RN, I believed in healthcare and medicine. That conviction has slowly been eroded.<br /><br />Seeking more help, I started seeing our local CFS guru who did lots of tests and prescribed lots of scripts. Included were ten runs of IV IgG which was supposed to cure me. It only emptied mt wallet. (And probably was detrimental.)<br /><br />He did find that not only did I have Epstein-Barr, but also HHV-6 and mycoplasma. Those were treated with a succession of antivirals but the only one that lessened my fatigue was the most expensive - gancyclovir.<br /><br /><br />In late 2000, my doc was getting ready to do Phase III trial of Ampligen. While I couldn't afford to participate, his patients who were getting it had to have Lyme ruled out. Of those 25 patients, 24 tested positive for Lyme.<br /><br />Overnight, our CFS guru became our Lyme guru. He tested almost all of his patients and most of us had "equivocal" or positive results. Since my tests wre equivocal, I had to start oral Biaxin.<br /><br />My joint pain dramatically resolved, I sold my motorized wheelchair since I no longer needed it, and I recaptured my brain.<br /><br />I stayed on that oral antibiotic for about 4 years and seemingly had better results with far fewer problems than those who were placed on IV Rocephin.<br /><br />I became the President of our local 300-member Lyme Support Group. Our group eventually disbanded as former FMS and CFS patients began seeing improved quality of life with their Lyme treatments.<br /><br />Wanting to help, I still maintain a telephonic support and referral service for callers from all over the country.<br /><br />My doc surmised that the "ringworm" was my bull's eye rash so that dates my bite to 1985.<br /><br />However, I may have been re-infected in 2003 since I developed a circular rash on the inner aspect of my right ankle.<br /><br />My LLMD have parted ways a few years back and I'm praying my new Internal Medicine doc will step up more strongly and start testing my immune deficiencies and treat them.<br /><br />Last Fall, I realized I was in a relapse and after almost 4 years off, have returned to Biaxin, Flagyl and acyclovir for my high Epstein-Barr and Herpes Simplex virus titers - all with excellent results.<br /><br />I pray that everyone with Lme gets better testing, better research, and beetter treatmentsSunshine Sparklehttps://www.blogger.com/profile/00703310537125828126noreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-72304980878784422872010-06-18T23:13:00.978-07:002010-06-18T23:13:00.978-07:00Every little thing that everybody is doing to help...Every little thing that everybody is doing to help raise the awareness to this epidemic, Lyme disease, is doing great things in making a difference. You and your colleagues, for instance the PSA creations, are just another example.<br /><br />I was infected in either 1999 or 2005, many health issues from the year 2000 on and I finally had a major health crash in May of 2006. Six months later I was finally diagnosed with several infections that make up Lyme disease and have since been struggling to eradicate the infection. In the last 4 years I've completed one year with relapse, followed by 2+ years of aggressive treatment to eradicate the infection and year by year I have made great progress in health improvement. I am grateful for having found the way to regained health.<br /><br />Peter<br />Vancouver, BC CanadaPeter vT @LD360noreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-51805980130238832312010-06-18T22:47:50.298-07:002010-06-18T22:47:50.298-07:00I do not have Lyme, but i try my best to help lyme...I do not have Lyme, but i try my best to help lyme diseise foundation and i aware people of the dangers of ticks. My blessings to all and i hope that they find a cure soon <3Kelsey Reminoreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-87242172058565575442010-06-18T22:30:01.496-07:002010-06-18T22:30:01.496-07:00Nani, I cannot believe I missed all the work you h...Nani, I cannot believe I missed all the work you have done here!! I was aware of Ashley's PSA work, but I missed so much--THANK you for posting the PSAs, your work on all this, and for such clever, clever and important things--e.g. enabling folks w/o Lyme to enter this giveaway by watching Under Our Skin. Fantastic! <br /><br />I got Lyme near Plum Island in the late 60s. I was reinfected in the DC area around 2003 or 2004--can't recall, bec. since then I have been very, very sick. MUCH better now, much, thanks to the rarest of rare blessings: my doctor, who is a Lyme Literate Medical Doctor. <br /><br />The Poppy Seed is my favorite too.zebrafinchhttp://www.twitter.com/zebrafinchnoreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-50728974059499940022010-06-18T22:03:17.305-07:002010-06-18T22:03:17.305-07:00Wow Nani, I had no idea it was so wide spread! I n...Wow Nani, I had no idea it was so wide spread! I need to call you to find out how to protect my kids.. we are going hiking soon with Cub Scouts and I don't want to take a chance. Thank you SO MUCH for your devotion to spreading the word and educating everyone!Shawnnanoreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-58494235694814308232010-06-17T22:50:37.060-07:002010-06-17T22:50:37.060-07:00Oh and I forgot to mention that I've made mult...Oh and I forgot to mention that I've made multiple donations (both over $5) to Lymenaide, so I guess that counts as my third entry. (I can provide proof of it if need be.) Thanks so much!Maddiehttp://candice-accola.net/noreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-49852369971684934192010-06-17T18:37:21.127-07:002010-06-17T18:37:21.127-07:00I will sum this all up by saying I am here for any...I will sum this all up by saying I am here for anyone who needs a shoulder to lean on, someone to listen, and someone who really understands what LD is all about. Please do not hesitate to contact me on facebook if you need a friend. May God Bless All Of My Fellow Lymies and the people and doctors that are there for us.Connie Babcocknoreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-49669188084198011282010-06-17T18:32:04.530-07:002010-06-17T18:32:04.530-07:00There are days when I hurt to bad to even get dres...There are days when I hurt to bad to even get dressed. I go from the bed to the sofa and my feet hurt so bad I can barely walk. My hands hurt as well as my neck,back, shoulders, and most of the time my whole darn body.<br />On the few days I feel better I try to get outside or ride some place with someone. Then I hear comments that really get my blood pressure up: "You don't look sick. It SEEMS like you go alot of place (that is B.S.), and on and on.<br />I would just like to say that no matter how I feel, I know there are a lot of people who feel a lot worse. Jesus suffered so much and died for me so who am I to feel sorry for myself?<br />The doctors told me to try to keep moving and do as much as I can or my fibro will get worse.Connienoreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-87115829039341881752010-06-17T18:25:42.031-07:002010-06-17T18:25:42.031-07:00These are just two of the many things that have ha...These are just two of the many things that have happened to me that no one could find a reason for.Here are a few of the things the doctors have diagnosed me with; cronic sinititis (sinus surgery twice), cronic sleep apnea, hearing loss, brain fog, fibromialga, arthritis, restless leg syndrome, non alcoholic fatty liver,cronic fatigue syndrome, and the list goes on...Connienoreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-85438174175298869092010-06-17T18:21:42.116-07:002010-06-17T18:21:42.116-07:00In my 40's I had a stroke in my sleep. The blo...In my 40's I had a stroke in my sleep. The blood clot went to my right eye. I was told I must be an old person in a young body because I was to healthy and young to have a stroke. Three doctors and two hospitals did test and never found a reason for the stroke.Connienoreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-70825719197317076792010-06-17T18:19:08.076-07:002010-06-17T18:19:08.076-07:00I am a 61 year old female who has had LD for app. ...I am a 61 year old female who has had LD for app. 40years but was diagnosed in July, 2009. I could write a book on all the "odd" illnesses I have been treated for over the years. I had seizures when I was in my early 30's. They did every test available but found no reason why I had them. Then at the age of 37 they stopped.Connienoreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-57680240307251651292010-06-17T15:25:50.858-07:002010-06-17T15:25:50.858-07:00It seems most all has been said and I am without w...It seems most all has been said and I am without words left with a swelling in my heart for concern for all victims with a strong desire to keep spreading the word on how to help victims and how to keep others from being a victim. Nani, you and your team are doing an outstanding job, beyond beyond. I hope (pray) to see you or Ashley...just anybody, on the air waves soon. I say this as I send a PSA kit to our local channel out of Gainesville, FL. God bless you all and keep the faith!!moogiehttps://www.blogger.com/profile/17938080603878509547noreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-42152756520733817542010-06-17T06:37:03.695-07:002010-06-17T06:37:03.695-07:00Scary. Thanks for everyone who posted and left th...Scary. Thanks for everyone who posted and left their stories. Thanks for spreading the awareness on your blog. I'm off to post on FB and see about watching the movie.Kathy Yorkhttps://www.blogger.com/profile/06008698368420516183noreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-14996496100344790702010-06-16T22:11:29.288-07:002010-06-16T22:11:29.288-07:00I am officially following your blog :) I guess th...I am officially following your blog :) I guess that is entry #3 for me! :) (Suzi Overstreet)GotTheBestKidshttps://www.blogger.com/profile/15463269350910233978noreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-60620590515295040102010-06-16T22:02:42.466-07:002010-06-16T22:02:42.466-07:00My first symptoms were severe stomach pains, a flu...My first symptoms were severe stomach pains, a fluttering feeling in my head and chest pains. Fatigue and muscle/joint aches soon followed.GotTheBestKidshttps://www.blogger.com/profile/15463269350910233978noreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-71363390661234517862010-06-15T03:45:16.987-07:002010-06-15T03:45:16.987-07:00What you are doing here is so needed... thank you....What you are doing here is so needed... thank you. The video is very useful. Good luck to us all...Fulviahttps://www.blogger.com/profile/03781269837265804791noreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-90873007227310020332010-06-15T00:39:38.949-07:002010-06-15T00:39:38.949-07:00The test for Lyme Disease seems to be a "Run ...The test for Lyme Disease seems to be a "Run only if all else fails" test in the minds of health care givers. My son- in-law, infected in the Pacific Northwest, had four years of symptoms before he was tested, and the symptoms are now so devastating to his daily life and so resistant to treatment that he despairs of ever being able to live life normally or painfree again.LynnDelhttps://www.blogger.com/profile/10768805817727296634noreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-71440389930647650152010-06-14T22:11:54.314-07:002010-06-14T22:11:54.314-07:00A family friend has Lymes disease....and I'm s...A family friend has Lymes disease....and I'm so pleased to see how this is being publicized. I'm glad to know the symptoms because I have two young children and I too want to know the correct questions and tests to request if I should see these symptoms.<br /><br />KellyIHaveANotion ~ Kelly Jacksonhttps://www.blogger.com/profile/07368085552525311127noreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-42946231799759848962010-06-13T20:40:03.525-07:002010-06-13T20:40:03.525-07:00My daughter was diagnosed with lyme last fall. We...My daughter was diagnosed with lyme last fall. We spotted multiple round purple/red rashes on her legs and torso in july. We made 2 trips to the pediatrician to have her tested for lyme. She had all the classic symptoms, neck ache, flu like symptoms several weeks prior to the rash,and she was very lethargic. Even after we described her symptoms, we were told lyme is not an issue in NC. We were told it was most likey some type of summer skin rash. 3 months later she was unable to walk on her leg due to a sudden tenderness and swelling. We took her to an orthopedic dr who drained fluid from her knee. We were sent to the ER and she had emergency surgery to remove the fluid later that day. After 4 days in the hospital we insisted on a Lyme test. Guess what??? She was positive on her western blot. The meds were brutal to her body and it took her all winter to feel herself. She is better...I dont know whether it is in remission or gone. She is terrified of getting another tick. I dont blame her..what she went through was terrible!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-72701853836721316302010-06-13T17:52:25.418-07:002010-06-13T17:52:25.418-07:00I am a retired Nurse Practitioner. It is SO easy t...I am a retired Nurse Practitioner. It is SO easy to test or treat a suspicious rash - at very little cost and inconvenience. I am appalled at the ignorance nay ARROGANCE of the medical community who turn their heads or insist this isn't a problem.delanequiltshttps://www.blogger.com/profile/03903662374228121630noreply@blogger.comtag:blogger.com,1999:blog-1157308683268068679.post-33998231040030998582010-06-13T17:47:48.496-07:002010-06-13T17:47:48.496-07:00Thank you for all you're doing to raise awaren...Thank you for all you're doing to raise awareness! <3Unknownhttps://www.blogger.com/profile/10833249765198850222noreply@blogger.com