RE: Re: Issues with friends and Lyme disease-to

[Guest guest]

Dear -

I'm sorry about what happened and is happening with your daughter Molly. I think it must be even so hard being a parent and watching it happen to someone who you would not think twice about throwing yourself in front of a train for. I'm a mom and this put things in a bit of perspective for me. Putting on a game face is exactly the perfect way to describe what we have to do on a regular basis and it is so draining. Just having to sit around and watch the world go at a different pace is hard. I feel like it's very hard to try and keep up. I got Lyme in the year 2001 and basically sat on the couch for 8 years. When I finally felt a little better I felt (and still feel!!) that the world is a different place. Just the technology like cell phones and iPads is amazing--but I still kinda feel left in the dust. You are surely right when you say 20 year olds have a hard time understanding illness, they are so busy and have so much to do--maybe your daughter can come on the Lyme site so we can give her a group hug!! Thanks so much for taking the time to respond even though things are so hard for you--I appreciate it so so so much. Give Molly a hug for me please.

Thanks again ,

XOX Dea

To: Lyme_and_Rife From: karen_jubeck@...Date: Thu, 19 May 2011 21:49:04 +0000Subject: Re: Issues with friends and Lyme disease

I suspect that each and every member of this group understands completely what you are saying! My 22 year old daughter, once a member of a big-12 collegiate dance team who knew half of the people she passed walking across a 20,000 student campus, now has no friends. It breaks my heart when she sadly verbalizes this. Most twenty-somethings don't have any capcity to understand this illness, and she has never wanted to try to explain it as every time she does she is discounted. The tendency is then to withdraw. She has parents and a boyfriend who are wonderfully supportive, but that's it...we are her entire system, social, emotional and otherwise. I am in the same situation, by proxy. Friends, coworkers, and even family, only have so much tolerance for our grief and worry. I put on my game face and pretend, just to get through the day, even though that punched-in-the-gut sense of anguish is always there. The most comfort I have found is though electronic correspondence with members of the group. We all want, and need, people who understand. And yes...it most definitely robs you of self-esteem. Molly had been a super-achiever throughout highschool and college until she got sick...I've watched her go from having the super confidence that being at the top of her class gave her, to feeling very vulnerable and beaten. It is a daily struggle to help each other keep our spirits afloat.We must take comfort and find strength in Lena's post today, try to stay positive, take it one day at a time, and give support to each other. > > >> > > Hello,> > > Glad to see you have found a LLMD and a diagnoses. I have some of your symptoms also, right now muscle weakness, slight swallowing and air hunger that has gotten better > > > over the last week or so. I too freak out about having ALS, glad to see I am not the only one concerned. I hope you get all the help you can here at the lyme support group, > > > it is a great bunch of folks with a lot of wisdom and compassion....they have been essential in my healing process. Love and Peace, Dana from Texas> > > > > > > > > From: sparklegoose > > > Sent: Monday, May 16, 2011 11:47 AM> > > To: Lyme_and_Rife > > > Subject: My Introduction OT> > > > > > > > > > > > Hi everyone! I am new to Lyme, but have had Lyme symptoms of crushing fatigue, weakness, night terrors, gait instability, blurred vision, numbness, muscle atrophy, hoarseness, twitching, muscle cramping, palpitations, arrhythmias, air hunger requiring CPAP and O2 at night, a feeling of dying, etc. developing over 6 years, bouncing from MD to MD, spending lots of money and getting lots of nonsense from the docs, but no diagnosis except fibromyalgia and sleep apnea. I really thought I had ALS or MS. I have no pain. Because of 2 "false positive" Lyme tests a little over 2 years ago, I was referred to an ID who did nothing except tell me that I couldn't have Lyme because "Lyme is not a chronic disease!" Thank God I found out that it is necessary to go to a LLMD for a true Lyme evaluation! My LLMD is a Godsend to me! I was recently given a Lyme clinical diagnosis and have been on triple-antibiotic therapy for about 5 weeks now as well as lots of herbal concoctions for herxes. I have Rosner's book on rife and also his top 10 Lyme cure book - but have not fully read either one (needing to sleep a lot cuts down on the time I have to do things). I get 11 to 12 hours of sleep per night with some daytime napping. I'm interested in rife because of what I have read in Rosner's book on 10 Lyme cures and also from talking with someone in my Lyme group who uses rife. I feel rife is the real answer to curing Lyme while not going broke! Glad to be here!> > >> >>