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Dear Denise...

I don't know why I felt we might have some connection...but it is unbelievable, I was a patient of Dr Corsello's...a complementary wonderwoman of Huntington Station about 9 years ago I guess...She found a thousand more things wrong with me then than I already had diagnosed by so many other doctors...I still remember the video and other aspects of treatment...but she was far too expensive and there was no way to go to her and not be out on the street, literally...it is the same now, having already tried almost a year's worth of brilliantly planned supplementation AND Rx based on my very specific immune system needs and systemic problems in general...in fact nearly no system was working properly by the time I saw her.
However, she has her share of problems like LLMDs do with insurance companies and even covered procedures because she is conventional AND unconventional so she is WONDERFUL but then she seems to balk once you are diagnosed with certain things or do not respond to ANY of the treatment protocols and combinations she comes up with and they are ones that most holistic physicians use...she is great, somehow she just doesn't do well with Lyme and a few other treatment resistant things..it was sad, because I had placed my life gladly in her hands she had such confidence I would be better and when I went in Jan 2005 it was a steady decline no matter what we did until Aug 2005...I think that is awful for both of us..and I was already on all these heavy hitting anti virals (that I needed) and several abx for the Streptolycin B overload in my blood.

I will tell you that I wrote you for an hour...busy, busy, busy Lyme crazy unorganized brain...a total nightmare on the Flagyl these past 3 days of the current protocol started last week....with the IV Rocephin in the poor PICC line that is still unsure whether it can remain or not...three near trips to the ER from Thursday PM alone, the nurse came 4 times to see me...and we waited out what seemed to be problems that would resolve...well the arm was so mutilated by that radiology dept in their quest for a usuable vein that over 2 weeks after the procedure my arm is unrecognizable above the elbow...swollen, black and purple still and a large amount of what seems to be just hanging flesh with no muscle tone that is a few inches longer than my thin left upper arm...she cannot explain that...doesn't seem to be fluid or lymph...just some kind of poss damage to a nerve or muscle..nice right. All weekend I was watching this arm..pain diminished but still swollen far too much and hard in places...sadly removal of the PICC line by the idiots who placed it after 8 tries...is the only answer...unless they can verify by xray that is definitely not leaking somewhere as the home nurse suspects...a tiny leak...I don' t know...

OH well....I digressed...I cut out the 14 paragraphs of grief and woe and absolute abject desperate sorrow and severe HERXING in every way...especially though in my mental processes and psychiatrically. I had ONE day, yesterday with my son...I did not spend any time with him on his 11th birthday, Fri. (not for a second though he lives only 10 minutes' drive from me) He and I had some sad/rough going...it is just hard after so long and now that he doesn't live with me half the time..and we were apart for so long (7months to a 10 year old...is a long time) and I AM SO much more ill now, all he remembers is the sick time. Oh he loves me very much...but it is a wretched life no matter how many jokes I crack.

It is morning...Aaron's father picked him up for school. I won't see him until Thursday when he "graduates" 5th grade, & for an hour or so..IF I can get there,...always a question now...

It is a surely a fight through HELL without a single voice in the cheering section or even in the bleachers, to encourage me to endure the pain and insanity and the rest and worst the inability to do ANYTHING...and just dwell in a twilight land of trying to stay hopeful and have faith that it must at least improve and some quality of life will be there again...someday.

I woke to erase another novel of blithering...and wrote it again!

My heart is broken by the lack of human contact and the ignorance of those far away in distance from me but closest to me in heart...like all my family in FL...they simply haven't seen me since I first was getting ill...and they know how BAD this all is abstractly, but have no idea really, since a list of horrific symptoms is not enough to convey what living this life day after day is really life for us. Especially the 7 months of exile alone and terrified in Lafayette, post Katrina...with no one and my son gone...I cannot distract myself with anything and I love to do a thousand things...even my love, reading a simple book is impossible.

Typing these things is a long and exhausting process and one I ususally delete after I do it...there just doesn't seem to be much of a point in bemoaning the life...you have no real choice but to try whatever you can and endure...and for me it is totally alone and without support or a gentle touch and so far I simply do not get better...and even if it will happen but take much much longer...I so just a bit more insane every day and that is not from the Lyme...but from the endless days spent in nothingness with old movies on a small TV with the volume all the way down the ONLY diversion...I cannot watch anything else, I don't like TV at all and I cannot watch the world going on out there and not be any part of it...

These tirades are long and so hopeless sounding, I cannot relate to these horrible posts as coming from RONI...my personality, my body, my brain are really not mine...and in a few months...all this faith I have and try to maintain all alone...well, there will not be a penny left from any source and even if SSD finally ever comes through (after 9 months so far)...it is less than 1000.00 a month...28 years of full time work and that is all I have been fighting tooth and nail for all this time...that won't even pay my health costs per month...I have no place to go. That stress is inescapable, what CAN you do when you have 3 months left of money to survive and there is nothing on the horizon...? All the faith in God in the world cannot overcome the fear in the back of your mind that no miracle will occur...there will be no rabbit out of the hat this time...

Now...there is nothing anyone here can say...everyone is so supportive and understanding and really DO care...as I do...but my life is a reality and one that would be rough and sad without Lyme...but at least I could put up a damn good fight...always had to. Now...what?

So...I write and write..eventhough I am always too tired and too sad for words...I hate it here in this horrible death town, New Orleans...I know that even before the hurricane season has started, our serviices and utilities (the ones that are here...no phone service still and cells are not always reliable...almost a year later...in my area)..well if the power goes out 3 times a week for no meteorological reason...and the heat and loss of refrigeration is really bad...once the storm season starts it will be bad here even if we have just a season of heavy rains and mild hurricanes...I want out..cannot go anywhere...and I have no business being here where there isn't a soul to even take me to the ER when I have an emergency...

Sounds like I am just having a bad day. But you know actually it is just how it is everyday and I buck up and by the late afternoon and after Provigil and other things I am able to function enough to think on a bit of a brighter note for an hour or so..mostly, it is just torture.

SO..I hope only Denise reads this...since Denise wrote directly to me and I would not have gone on and on if I thought that the general Lyme Board population would look at this thread...a few might...but Denise..I tell you...even my therapists and doctors cannot bear the life I am living and feel great pain for me...they cannot even give me false hope anymore...they just tell me to hang on to the sides of the driftwood in the Pacific for as long as I can...no promise of an island or rescue anymore just a longer journey...drifting and waiting...and suffering most of the time.

What can I say...? I have tried so many things and treatments in my life..and gone to some of the best doctors along with over a 100 horrible ones...more I am sure...with specialists etc...and I have never been more ill. YES, I will order the one or two supplements from Dr J...though that money is a fortune for me and I have never shirked from spending everything on my health but the money I have left is keeping me from the woman's shelter...I will do it...and hope that maybe, in 30 days I would notice even the slightest benefit and that would be more than enough to convince me...and to help me gain some hope again...

Sorry about what some might hear as negativity in this, if you only knew what an intrinsically optimistic person I have always been...but my real life is so much worse than I would dare say in public...here...or to anyone...well...I guess you are no stranger to some of these feelings and you are very fortunate that you found your answer in the protocol you are using ...and I know you thank God for it every day...and it was no easy climb out of the pit...

Thankyou and everyone for being out there...but in my world...you are all lightyears away and a single touch in real life from a loved one would be so healing and after a lifetime of loving and giving and gladly being there for so many...I am alone. That is the TRUE FACE OF LYME...and remember my mother had MS since since she was maybe 30 ish and is now 75! We are not strangers to this kind of devilish illness, at all.

With a grateful heart no matter how awful this all sounds...
I suppose I know the downheartedness and sorrow will all be understood...
bless you
roni





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