i am a husband who is trying to do his best to be good for his sick wife
My wife Rhonnie has had Lyme/Bart. for over 12 years - she has had 4 picc lines with a large variety of abx (vanco,flagyl,clafron,rifampin and more)
she has a positive western blot, positie elisa, positie PCR of spinal fluid and a removed nactrotic lymph node all positive for bart.
just last week for the first time she tested positive for babs at a regular lab = quest
im not sure how that test works but DR P from ct said normal positive range was 1 to 16 and she wa 10x over that
we just started seeing Dr P 1 month ago - previous to that we where seeing Dr C in Tampa florida
there was a large gap of time with no treatment between doctors - Rhonnie was burned out - she couldnt do it anymore- she gave up and swore she would never get another picc
it took a couple years but she is back on the horse again - we have given up our home and job to come up to Ct to where the Dr are the best for this bizarre disease
bewteen our savings and help from family and fundraisieras we are getting treatment again
we bought an RV and we have been here for 6 weeks - she has just completed 4 weeks of tetracyc. & diflucan - after 1 week off she will start zithro. & mepron
mepron is something she has never taken - since she has never had positive babs she has never recieved treatment for that - only the bart.
she has always had extreme sensitivity to the side effects of most drugs - over the years numerious doctors have put her on (that i can remeber)
my wife is a very strong woman - she has removed almost all of these drugs from her life - there was a time where doctors didnt know how to help except throw drugs at her symptoms
she was on so many different types of drugs at one time she didnt know which end was up (bad)
she was out of control - she hated the way they made her feel so one day she just stopped taking them
she went through major withdrawls from the oxicotin and the klonipin
she ended up staying on the klonipin but cut the dose in half - with out it she was having violent seizures over and over again
she stopped taking all the others - as it turned out none of the others where really helping
the klonipin is a huge help and i would recommned it to anyone with chronic lymebut dont go over 3mg 3x day, the oxycotin help pain but caused other problems as the dose had to be raised every so often in order for it to keep working and it just wasnt worth it for the sides
figure if your having problems keeping things staight in your all those drugs are not going to help
currently she is completely disabled - wheel chair when she can bare to sit upright - constent pain - severe neuro. problems jerks,tremors,rage,confusion,depression major sweats, all joints exspecially neck,knees,ankles hips, red face, cant get air, and all the other typical symptoms x 10
she has closed herself off from the world because she doesnt feel people will like her or want her as she is -
she feels worthless going from a extremely active physically superior incredibable beautiful carreer woman to where she is now
when she got sick i had to get off my *** - since she was the bread winner at that time
she has a need to be in control and she has lost all control - she feels she has no purpose
no carreer, no children, no hobbies, no friends and she is always feeling like she is letting me down (even though she is not)
most people i believe would have given up long ago - but not her she is so strong to have been through all this torture and still be here
but she has run out of strength and hope - we are here in NY getting treatment again - but with the babs she doesnt see the light at the end of the tunnel
i need your help to keep her going - she lies in the dark bored out of her mind with nothing good on TV and that is how she has been for years- she can only be on the computer or watch tv for brief periods - about 1 hour b4 she starts body twitching and face turns dark red
some on going friends to communicate with that can understand better than i can what she is going through
all replies to this thread will send to her email and i hope she will respond -
and i hope she doent get mad at me for sharing all this personal info Posts: 25 | From Florida | Registered: Jul 2008
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Dx: Lyme & Bart April 2008. currently on plaquanil, Roxid and Sulfameth. Posts: 89 | From Manalapan, NJ | Registered: Feb 2008
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bettyg
Unregistered
posted
welcome rhonnie and hubby; so glad you found us!!
we are here for BOTH OF YOU! congrats on being a good hubby to your lyme wife; NOT everyone is ... so there are SPECIAL folks like you who ARE!
hubby, what's your 1st name if i may ask?
i've just completed reorganizing my newbie package; click below link at end of my post; now has a table of contents so you know what is in there before spending hours for NOTHING!
check it out at your leisure. best wishes, and i'm praying your wife might LIKE to participate here in her much limited capacity.
someone is on here 23/7 ... 1 hour when no one is; so that's pretty good support.
post in support when you need a shoulder to cry on, rant, etc.
if you have medical questions, post SPECIFICALLY IN SUBJECT WHAT IT IS so you get readers and their replies.
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying so we all must manage our time well; so specific titles get our time/replies. NON-SPECIFIC ONES, I SOB, SCROLL ON BY! **********************************************
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we are not new - we have been reading from this site for a long long time
registered one time long ago but only posted one thread under different name
stressed out is the name Rhonnie picked this is not about me - its all about her until she gets better
i am posting on her bahalf cuz she has a hard time on the pc
her face turns dark red and she fills sick and like she is going to seize if she is on the pc for more thana few minutes - some times its better than others
anybody else notice computer making them sick if on to long?
more history :
she was misdiagnosed for 5 years - everything from chronic fatigue to Ms to AlS over the years
i know this story is the same for everyone but here i go:
all those years and all those positive lyme tests and even a lymph node surgically removed showing bart. and the positive spinal DR in FL still want to call it anything but lyme
last neuro said ALS (as* wipe)
sorry
someone asked about the babs test
i dont have good info - all i can do is repeat what i thought DR P said in a 3 min phone call
if i got it right he said positive usually ranges from 1 to 16 and Rhonnie was 190+
i cant say much more since i have no clue up to now i have done most of my reading on bart.
gotta go be back later
when she feels up to it we read your replies together and we talk - then i come and post when she is resting
Posts: 25 | From Florida | Registered: Jul 2008
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