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I'm so TICKED OFF about it all right now.

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Posted 9/29/2009 8:37 AM (GMT 0)
i haven posted much lately do to my frustrations with Drs or lack thereof. and knowing this can kill if not treated. and right now i have no med coverage at all :(

i have now even stopped all my meds at this point. and yes the pain is way up, and migraines are back.

and i have so much lower back pain i can hardly sit in a chair for any length of time.

i have been so depressed, sick of being sick and life goes on BS.

No my life have come to a stalemate in so many ways. its not a life when you cant do anything. its like i'm a bump on the couch or bed. this is not living to me.

i get so pissed about the lack of Drs who know or even care about LD.

its like when AIDS started out, it took Drs many yrs to learn about it and how to go about treatment for it. but they didnt just wright them off. and i feel that we are not giving the same thoughts with LD.

yet it has been in so many folks life for upwards of 20 yrs. yet Drs are no closer to learning a thing about it.

on the contrary they are scared to Dx and treat for it. it just blows my mind so many Drs can think so little of our life. JMHO

sorry for the vent here, as i know i am not alone in this. and it affects so many others, who are going thru some of the same things.

it just really tees me off to know that if your lucky enough to find a DR they wont take ins, and when we are so sick most cant work. so its like a lose lose to us.

there are a few Drs i have found, but all are over 600 miles away. and so far not 1 will take ins, and even if they did. i couldnt afford to get to them :((

so i guess my point is i have to pray my body can hold this disease at bay long enough for the flipping Drs to wake up and start to learn again what being a Dr is all about.

could it possible be to help folks? maybe even cure or treat them? hmmm so far i see them only looking at dollar signs.

i think compassion needs to come back into the mix. and bedside manners too.

once again sorry for the vent and long post.

praying for all daily :)

 

Posted 9/29/2009 11:55 AM (GMT 0)
I'm so sorry RD that you are going through this..  I remember how frustrated I was going  from doctor to doctor for 5 very longgggggg years wanting to be diagnosed..   I was so desperate for ANY diagnosis that I think I would have accepted Cancer, yes, I was that desperate...

And as happy as I was when I finally did get diagnosed (by an ID doctor of all doctors who used IgeneX) I started my long journey to try to get better again.. 

Well, this is not about me, this is about you... 

I feel your pain, I feel your frustrations simply because I was there myself... At one point I was thinking of taking my own life, honest!  Another time a member called me at home because I was that depressed..  I think she was scared for me..

RD, it does get better and I believe there is a reason for everything that happens to us..

In my case (because doctors weren't helping me) I had to take matters in my own hand and become my own advocate.. I can't tell you the amount of hours each day (when I was awake) that I researched this disease....

I know it was the lyme forums that helped me the most find my path to getting better.. I took a little knowledge from one person,  then another, and tied it all in until I found the right combination that worked for me..

And maybe, just maybe this will happen for you..

I am thinking of you and sending you positive thoughts,

Denise

Posted 9/29/2009 5:04 PM (GMT 0)
Hey RD, I understand what you are going through right now, as it's been over 2 yrs since I been able get any real help for LD. The nearest LLMD to me is over 500 miles away - ONE WAY!! I have been very fortunate to have a gp that is really, truly interested in helping me to have some quality of life!! Like you, I refuse to just sit around like a bump on a log and call it a life!!

Personally, I believe that those who love the outdoors & love life that get infected most often.

Have you considered trying to do some homeo or natural txs to help your body keep from getting totally over-run with Lyme? I was getting ready to do this myself, but then-fortunately- my gp agreed to help!

It took a long time to screw up the courage to try to do homeo or natural tx's, as I have a lot of issues with Lymie brain the last 8 months or so! That, and, there is absolutely no one in my area that has LD or other TBI's that I can just talk things over with in order to make sure I didn't do the wrong thing!

AND... we all need to vent sometimes!!!!

Sending you lots of healing thoughts & plenty of prayers~
Trav
Posted 9/30/2009 5:17 AM (GMT 0)
thank you both for you thoughts and also thanks to the ones who emailed me too.

its a sad think we all are going thru this and have so much compassion for each other, yet most of use will never meet in person. then you have the Drs we go to and are face to face with them and they dont give a crap.

i thought when my WB came back positive that it would be simple. like my dog. get some abx and be on my way to wellness. boy the joke was on me big time.

as most of you know in my older post. i havent been able to work for over 3 yrs now. i have no income at all. if it wasnt for my bestest friend. i wouldnt have a place to live either.

so i can not chase after Drs or treatments. they have me over a barrel here no doubt.

i read so many post here and i wish i could respond to them, i want to, but for tha last few weeks i just cant seems to make myself post. i do manage to post a tidbit now and then.

but i do answer them in my mind, i just cant get my mind and fingers to work together..LOL

so even if you do not see posts from me, know that i do read each and every one of them :) and that i have everyone in my prayers :)
Posted 10/3/2009 3:42 AM (GMT 0)
RD, I am sooooo sorry. From the time I first started reading your posts, I have strongly felt that your case is a case of malpractice. Dr's CAN be sued for negligence, and a refusal to give a diagnosis in the face of verifiable evidence.

And I'm feeling for you, esp now that I am in only one of your fixes (even tho I have a diagnosis) : I need a Dr who can help me. I cannot return to the LLMD who diagnosed me. He does not accept ins (and vice versa), he and his nurse are unreachable and do not return calls, he didn't seem to know what some of my lab results meant, even tho he is the one who ordered them (ie; he couldn't answer my questions on them), and I felt like, w/ all my various test results that he was not organizing this info -- He was just writing out scripts and more test rx right and left.

So now I've gotta find a LLMD or other Dr who can help me. Ive called several this week and none are taking new patients. Meantime, I'm on plenty of Amox.

So, RD, too many of us are STUCK in lah lah land. I, you, and ALL of us need a doctor! But we are also STUCK w/ the fact that most Drs don't know about Lyme, don't believe in lyme, and don't know how to treat us. Therefore, they will not accept new patients w/ Lyme.

Lyme disease aside, I have lab work showing a bunch of abnormal numbers, Yet I cannot find a Dr who can/will help me.

It's an atrocity!!! Ridiculous!!

RD, Hang on there, THINGS MUST CHANGE!!
Posted 10/3/2009 4:27 AM (GMT 0)
Hi Rd,

THis is the worst thing about Lyme- wonderful people like you are left without any way to get treatment. But- you have made it this far. You are a tough cookie! You can do this. I will be praying that you find some help soon!
Can you get on Medicaid, or disability? I'm not from the US, so I don't know about those things- but if you could get them, they could help.

I'll be praying for you RD.
Posted 10/4/2009 1:31 AM (GMT 0)
rottondog, did you get my e-mail? If so what do you think?

Posted 10/4/2009 5:01 AM (GMT 0)
RD,
I'm so sad to read your post and to understand the pain you are suffering. I will pray that you find some relief soon and that the right doctor will soon cross your path.

Rose
Posted 10/4/2009 4:14 PM (GMT 0)
Hey RD,
I'm going to be taking the book; "Insights Into Lyme Disease Treatment - 13 Lyme Literate Health Care Practitioners Share Their Healing Strategies"
to my gp on Thurs, in hopes that he can treat me for TBI's.

There are so many of us who, like you & me - can't travel far enough to seek out tx by an LLMD. If my gp can get me going on the right tx - then I believe this would be a huge benefit for all who can't be seen by an LLMD.

I will, of course, post about how well my gp is able to understand, & treat me with the addition of this book in my arsenal.

Hang in there!!!
Posted 10/4/2009 6:00 PM (GMT 0)
Does anyone know if there is any way that we could get some press for RD? Does anyone have any connections? I believe her story is hugely important -- esp while we have all this 'healthcare for everyone' BS out there. What good is 'healthcare' if the Drs don't listen, believe or care??

Her story is a tragedy and people need to be made aware of it. And maybe if her case got some attention, a Dr would come forward and offer to help in some way. Any ideas anyone?

And RD, please don't ever feel bad about not responding or posting. We all know where your heart is. Lots of us cannot respond to all posts and we'll all just do the best we can and hope to get somewhere eventually.

Posted 10/4/2009 11:10 PM (GMT 0)
RD,

For different reasons, I haven't been able to spend the time on here either, but I try to keep checking in, just to see how you and others are doing. So sorry that things are still not turning around for you. +Lyme has a great idea if there is any way to pull it off!

Still praying!
Posted 10/4/2009 11:35 PM (GMT 0)
Sorry about your continued ordeal with the lack of health insurance and the lack of medical care.

By any chance, did you ever try some of the natural supplements we listed on that post a few months back?

Also, what specific antibiotics are you seeking? Doxy can be obtained over the Internet.

Good luck and I'm so sorry again that you are suffering -- probably needlessly if you can get to an LLMD.
Posted 10/4/2009 11:40 PM (GMT 0)
oooooooo I love POS Lyme's idea!

RD though may not want the publicity. . . or would prefer to have her privacy. Don't know. If she's game, great idea though.
Posted 10/6/2009 8:00 AM (GMT 0)
Thank you all for your heartfelt thoughts and it brought treas to my eyes reading all your post.

to answer some of the things brought up. after i was sent to the ID. who doesnt believe in lyme in my book. i did talk to a lawyer. they told me to go back to him. what a joke that was.

and my PCP told me i was not aloud to talk about lyme to him. its why he sent me to the ID. not in his field. another brush off.

in may i called all the news stations here to try to get the word out about lyme disease and even the local news paper. not 1 gave a crap. i got 1 return call after my 3rd call to them. then they dropped it.

i even went so far as to wright into Oprah and wal-mart to try to get awareness about LD out there. not 1 person i talked to cared enough.

i keep getting ( itsnt that from ticks, but you can get abx and be well) from them. makes me want to spit i get so mad.

yes everyone here fully understands. but until we are all well enough to stand up as a force to be reckoned with they will contuin to push us aside. turn a blind eye so to speak.

i even whent so far as to make up my own T-Shirts ( I Have Lyme Ask Me about IT!!!) hot pink with lyme letters. you couldnt miss it if you tried.LOL but doesnt help here in Tx.

i am not scared nor am i afraid to go public. shot if it saved 1 life it would be worth it. and even if its not my own, but specially a childs. as they are the ones we need to really speak up for. in my heart i feel they are in the most danger from lyme.

they play outside without a care in the world. and rolling around in the grass is fun, climbing trees hikes in the woods. something to simple in life witch can cause so much harm. its a shame really.

like i have said b4 i do not know when or where i was bit by how many vector ticks, as i have spent most of my life outside in the woods and so on. and i have lived in all but 4 of the 50 states. and yes bit in almost every state too.

and if it wasnt for the lesion in my left eye, i wouldnt know i had lyme today. thats when i had a MRI showing 10 to 15 lesion in my brain. joy oh joy

i would keep on thinking this was all arthritis and who knows what later. but i do know its LD and i know it can kill. so is this my path. i do not know. but i do know i will not go down without a fight.

i cant even wait in line at the store without telling whomever is close by about lyme. no i'm not shy at all, and if it helps 1 and i pray much more then 1 life then it is good to me. i will not crawl into a hole and hide. thats just how i am. i am up front and in your face.LOL

as for your email GG i did call them and am waiting to hear back from someone who i need there help. i will try calling again tomorrow. thank you for all the info.

as for trying sulpmets i cant afford them sorry to say, i have not worked in over 3 yrs now, and i'm trying to get SSI. last time i appealed it to go to court and was told it can take up to 2 yrs. i hope i'm still here by then..LOL yes its a racket if you ask me. everyone has to have a cut. its life and i'm used to it.

once again thank you all for your prayers and kindness, as your all in my prayers daily :)
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