I haven't written on this board for quite a while. The business of taking care of a sick child, although she's 28 she's still our child, is close to a full-time job and it doesn't provide much time for this type of thing.
I thought I'd share a story with all of you concerning my daughter's treatment, etc.
My daughter has been suffering from the effects of Lyme and the associated co-infections for over 5 years. She was finally properly diagnosed in October 2005, but not before the seemingly endless number of mis-diagnosis that many Lyme sufferers encounter (psychosomatic disorder, fibromyalgia, CPS, CFS, Lupus, MS etc., etc.)
She has been through several series of oral antibiotics since last October and appeared to be allergic to just about all of them. She was finally prescribed Rhocephin in June 2006 and we have been infusing the medicine into her PIC line since that time.
Her health insurance denied payment after the first 3 weeks and we have been paying out-of-pocket, to the tune of $740 per week, since the second week of July.
Now the good news: the Rhocephin is working. We are seeing a real difference in her symptoms. The joint pain has been reduced by about 50%, her migraines have decreased in number and severity and she has been able to get out bed much more often.
The real good news: The Social Security Administration has just recently judged her to be totally disabled and she will begin receiving her SSI check the end of next month. It's not going to be enough for her to be completely self-sufficient, but every little bit helps.
The really really good news is that beginning next year she will qualify for Medicare and that is the real blessing. At least now we won't have to be at the mercy of her health insurance or her employer's disability insurance.
I just thought some might like to read something positive. The system can work for those who really push for it. Although we did have to hire a lawyer to assist with the Social Security paperwork, it was certainly money well spent in the long term.
She's not cured yet and she still spends 5 or 6 days out of the week bedridden, but we can at least see the light of recovery out in the distance. You just have to be positive and continue to fight.
Posted by Ladylee210 (Member # 9945) on :
What a positive post and please send good wishes of health and happiness to your daughter.
God Bless!
Posted by riversinger (Member # 4851) on :
I'm so glad to hear that things are turning around for you and your daughter. I know you have been through very dark times, so this is especially sweet to hear that you are finding some relief!
My best wishes for her continuing recovery, and the lifting of your burdens.
Posted by Jill E. (Member # 9121) on :
Hi Lymedad,
As one Southern Californian to another, I just wanted to say that I am very happy to hear your report and thank you for sharing the good news.
I'm a Chronic Lyme patient myself (and you know how the doctors in Southern California don't believe that Lyme is here), and my dad is a recent Lyme patient who is now fighting the treatment (perhaps it's the Lyme affecting his judgment).
Your post is very therapeutic for me and I appreciate it knowing that there can be some bright spots on this rollercoaster ride we are all on!
Please give your daughter my best and congratulations to your entire family for fighting for what's best.
Jill
Posted by lymie tony z (Member # 5130) on :
Great news Dadio! Have'nt heard from you in quite some time...glad the news is good. Now if your son could only get Osama in his sights...woo woo...guess he'd have to move to Pakistan for that however.
Bare in mind that your daughter may develop a respiratory problem akin to pneumonia/bronchitis on the rocephin...and some have had a problem with their gallbladders...
I recommend she also pulse some metronidazol(flagyl) if she can tolerate this cuz the rocephin usually pushes the BB into cystic form...
If you can follow up the rochephin with clindamycin it may give her a lot of benefit...
It may give her some muscle pain too but that will clear when she stops that particular med...like levaquin(flouroquinalones cause tendenitis and she won't realize that thinking it's the lyme).
The fatigue will be hard to get rid of...but ya gotta keep pushing.... If and when I ever figure out how to solve that one I'll give ya a buzz...
My best to your best........zman
Posted by lou (Member # 81) on :
Seems like the cost of this is higher than would be expected since rocephin went generic. Did you do any cost comparisons? Hate to see you clobbered with a huge bill if it can be gotten less expensively.