Join Date: Nov 2005
Location: New Orleans
Re: Please Come One, Come All to a PICC Line Revival...
Dear Marsha, Jodie and Denise...anyone out there.
I must stop typing half the night (I am able and then deleting all the posts) this time I won't it is long but my last post, I am sure...I lost more to this disease that was already rip roaring through my system and had put me out of work on a lovely unpaid medical leave from Jan 05 basically till now(I would try to go back at every chance against doc's wishes, between the start of the school year in Aug 04 through Dec 04, as I was first getting so incredibly ill...That "early phase." was filled with accurate diagnoses but just other chronic viral and even bacterial and systemic candida and other problems, enough that I was treated with all manner of antivirals, alternative IV therapy and many protocols for all the things the blood work revealed, including a strangely failing kidney problem and super hypertension, among other things..
Please understand, I have had autoimmune disease bouts of varying kinds in my life before, and had been diagnosed by doctors with CFIDS and Fibromyalgia along with Hashimotos (autoimmune hypothyroid) from my early 20s...I had a 10 year dx by rheumatologists in NYC of lupus and Mixed Connective Tissue Syndrome...so, you see, I am just not at all the newbie to this that I might seem. AND, that was way before my Lyme Dx. Oh, I had periods of "bad" times, sometimes stopping life in its tracks, but I nothing that was totally disabling and as completely horrific as this has been.
I have been through many of the different oral abx protocols...first Doxy, , and I almost died, literally...that was just about 3 weeks' trial before I had a midline put in and was given the usual max. of 4 weeks' Rocephin, 2 days later, came Katrina. My life for 7 years was trying to stay here in New Orleans after a horrendous divorce in order to maintain co -physical custody of my 4 year old son...I had to stay, with nothing here but my son, my beloved NYC gone to me, and 70,000.00+ in debt to lawyers and living on credit cards to support my son...
I lived in my car and would care for my own little boy in my former house and then leave to go and sleep wherever, I could not find work though I was highly qualified in many areas...5 years of searching.
So, my nightmare began long before I got the Lyme...but just 3 years ago, I finally turned things around, was hired by the public school system to teach the Deaf and and was in the best physical condition of my life...running daily again and the athlete I had been most of my life.
Then, just before school was to start in Aug 04, a mysterious rash (not a bullseye) but one that started low on my legs and spread to mid thigh,was totally misDxed...and is the apparent beginning date of this non-existent disease in New Orleans, with the tiniest percentage of Lyme cases statewide. Finally, sent to another Inf. Dis. Doc who tested me for everything short of Leprosy, my Ibnex Western Blots came up utterly positive, a year or more after I got the strange rash.
I write all this because I really have been to Hell and back many times in my life and way before the disaster of Katrina right on the heels of my chronic Lyme Dx.
Through the IV nurses after relocation, I found my wonderfully compassionate and knowledgable LLMD in N Lousiana because they had heard there were several patients on long term IV Rocephin being treated by this doctor That was one true GODSEND of Katrina.
But after a initial positive response to Rocephin...I was forced off and on for a variety of reasons...and went on minocycline, combinations of doxy and flagyl and many other combos...but we saw, that only Rocephin had any real effect on my neuro-lyme. So, my LLMD ordered 6 months IV, first PICC...as he treated me for Babesia and Bartonella (or tried). I was often totally nonfunctional on these drugs but refused to give in. Even the results of 5 mos. of Rocephin disappeared within only a week or two of stopping!
I fight my way back to blighted NOLA, after a 7 month separation from my TEN year old, taken to live in FL until Jan....No IV..well all 7500 NOLA teachers were fired and I was paying COBRA myself and they stopped the IV...two months off...and I was on the orals again...and no matter how I tried, the side effects (not Herxing) were so violent I was ordered to stop...
Finally, a few weeks ago..I found out that could have the IV for 6 months again, and get a new PICC line. I wrote my first post...
So...I seem to be a newbie, but am FAR FROM IT (appreciate beyond words the thoughts and suggestions of ALL of you) I am not new to chronic illnesses misdiagnosed, the loss of nearly everything, (even before Katrina, I was homeless and penniless after the storm and have no one who can help financially or otherwise.
THIS NIGHTMARE OF A CITY, toxic before, and horrible now, is no place for sick people to live. My LLMD is 4 hours' drive one way and here I have no one to take me as before, so my only real doctor is as good as 1000 miles away now.
I have written too much, but so wanted some of you here to really understand, I have been through so many Lyme treatments...my Internist was an MD and who specializes in alt. medicine..so I have gone with drugs and supplements both.
I am at the end of my rope and that is the truth. No, that is NOT MY NATURE, but I swear that for almost a decade, more I have proudly perservered while often in the bowels of HELL.
I have lost nearly everything including most human contact with anyone but my son, and that is no longer the alternating week on and off that I fought to have with my only child.
NOW, I have nothing but rare rare moments feeling close to "roni" and I often wish I could die. NO, I AM NOT A QUITTER...I AM EVEN A CRAZY OPTIMIST BY NATURE...so I know Lyme Brain, as my son calls it, is part of the reason I am profoundly depressed, panicked, filled with dread, hopeless a lot of the time and wish to just have it all stop. However, my circumstances give me little hope, and they are my reality.
I love LIFE, and ican delight in tiny things. If I had a shred of hope of anything being even remotely the same as 2 years ago even, I would go through anything, as many of you often say.
YES...I am desperate. No one has a reason in the world to read through this most self indulgent, hideous bellowing but I needed someone to know, even one person out..I cannot last much longer like this...even doctors and therapists and others who had hopes; all good people who know me, now have little hope for me...what is a life of almost utter physical and mental pain, deterioration and isolation. I have fought the good fight a long time, my friends.
In a few months, in spite of applying long long ago for any aid I could get, and I know all those horrors, both money and all credit cards will be gone. I moved back here withstrong Faith and prayers to let me live near my young son, but my life in this New Orleans is as dreadful as it could be...no husband, boyfriend, friends, neighbors, family or even a church community to support my soul and spirit...every morning I wake up and try to move and live through another day, an act of pure faith.
I have pray each night that God will have mercy and take me peacefully...I am only in my late 40s and like so many of you in a blink of an eye went was fit "young" woman, to one trapped in this nightmare. The mirror a cruel reminder each time of the toll this has taken so quickly.
I am posting this to a few threads in the hopes that it will reach some of you. I could not ever kill myself, but the thoughts of wishing for death are never far...and the doctors no longer argue much...IMAGINE THAT.
So, that is all about Roni or what is now Roni, with advanced and unresponsive Lyme+ who cannot wait a decade to get a bit better...where will I go and what will I do in a few months when I have no money? The stress is constant and a true demon.
I know there is no magic her...but the support of kindred spirits and very, very kind people who truly care, that is your gift. I waited too long, I cannot get help here.
The thought of not seeing my son grow up is unbearable...but the mother I am now...well, I have to watch from pretty far away now, and he has to see me suffering greatly, I have to think it really would be better. Without the touch of a human hand, and a bit of love what in the world can keep we who are this sick in the fight for a tiny bit of wellness often temporary. SORRY...I don't belong here, I tried, but I think I waited too long to reach out and it is too late.
Bless you and thank you for trying to welcome me and help. I cannot come here with the depths of my experience and ask any of you to listen or read further.
I will say goodbye here and on other threads.