Finally I find a doctor who will see me- may be able to help me- the appointment is in two weeks.
And I am so indebt to everyone from all the hospital visits, doctors that did nothing, etc- I can't raise the money to go.
No one even believes me anymore. They will agree that I am sick- that I couldn't make this up, but since there is no real evidence to prove that I would be any better off with the right doctor- no one will help.
I've tried already- seen TCM for a year, inf. disease ,etc. I've had to borrow money for rent, utilities over and over- having lost job after job due to illness that I can't explain- that no one takes seriously.
I never get better long enough to become financially stable enough to pay people back. I can't afford my health insurance anymore. I have sold everything I can just to eat and keep electric on. For almost 9 years I have chased different diagnosises, "cures", helpful unconventional things- until I was diagnosed with Lyme in 2002- I was convinced I would die without an answer.
I have a hard time knowing how to help myself when every answer for Lyme is theoretical and no long term help seems found anywhere. Which is worse- death on antibiotics- or death without? Which is right- which is riskier- what will help.?
I have thought so many times that I have found an "answer" only to find out I was worse.
I have no one left to borrow from. I can't work full time- I haven't been able to since befor I was diagnosed. Here and there I have- but then stress will wear me down- I get sick- I get fired when I dont get well like a "normal person".
Mayo clinic told me that I had great doctors here in St Louis- great hospitals- that there was no reason for me to go to the mayo clinic when I had so much here. That encouraged me until I went to these places and wasted my time and money. Mayo clinic won't even see me.
My family think this doctor in Springfield is likely another doctor who wants money. They looked at his credentials and they see nothing convincing about this. Before I could get money they want some proof that this will work- some evidence that this doctor is doing more than experimenting on me with this "theory he has'.
And my hope is gone. I;m tired of all the ideas- theories, etc. I thought TCM was a great solution and spent thousands of dollars on herbs and treatments and supplements. It helped me with pain. It helped me with headaches. And I wasn't drugged up on pharmaceuticals. I had more energy for a while. some people said I l;ooked better then. But I ran out of money.
I had to cut the herbs, then the supplements. I borrowed $ from my family to continue for 12 more visits- they said if I wasn't better after that then I had to quit. I still owe them for that. I had great confidence that TCM was the way to health. and while it helped many of my symptoms, it never helped all of them. The doc even saw me at a discount and free a few times.
But I was still sick. Not like this, though. This is worse. so when I got insurance- western doctor got covered- eastern doctor had to go- back on the circle of doctors and antibiotics and yeast meds and painkillers and pills and physical therapists and specialists and the specialists specialists.
And no one will do anything. Back to the ER to get stable when I cant breathe- or when I faint- or when my kidneys are infected again. Cat scans, MRIs, things not covered by insurance, tests that are done again and again even though they have concluded NOTHING. On to surgeons and Infectious disease. Who tell me I am nuts. Back to the shrink. Who tells me I am anxious and depressed -probably cause I'm sick. Back to my internist for another "cold, "flu", migraine specialists, nerve doctors, optic nerve doctors, more surgeons.
Gave up pain meds- decided to suffer. Took nsaids until I had blood coming out of my stomach and bowels. Took ulcer meds, saw stomach specialists. My conclusion was that western doctors know nothing. Back to TCM> ran out of money. Back to nutrition. Doesn't matter if I can't eat or digest my food before I puke. On to anti- nausea. "hey- no idea why you're vomiting all the time, but this med($2.00 a pill) will treat the symptoms. FOR A WHILE> until the med makes me sick.
Thought boyfriend had to be cheating- sex always caused me troubles, or infections. But no- I had no infections, just symptoms. Dumped him. Gave up sex. Gave up anything that could be a cause. Prayed. Went to different churches. Called voodoo doctors and asked about curses- and the cost of removal. Told my internist this and I was back to my shrink.
So this doctor in Springfield has helped people? So he takes the time? He has this huge disclaimer in his paperwork. Then again, so does tylenol. So does everything these days. My family says,"if this doctor is on to a great cure or treatment- if he has dicovered something -why isn't he celebrated? Why isn't he given a special title? Why wouldn't other doctors have reffered you to him?"
So no- I can't afford all this- it could just be another idea I'm chasing with the hopes of getting well. What if I never get well? What if no one does with this disease? What if all the money could be spent on trips to beautiful islands and on enjoying what is left until I can't remember who I am- and I wander homeless somewhere? Do I want to take all these meds and get even more ill if it is another temporary fix?
My insurance is up in a few months. I owe my father thousands for the payment of that. I can't afford to get more. And no company will cover me anyway- I have to work for some large corporation that covers groups to get coverage. I've tried. A lot.
I applied for ssi. and again- and I was denied. I used to have a great collection of vintage dresses, custom clothing aquired before I was ill. I sold everything to get by while I was this sick before. In 2002 I sold everything anyone would buy. I dated a hideous person just to move here- where I thought I'd have a chance.
If this is going to be my life- chasing after doctors- spending most of my time in bed or in waiting rooms, taking pills -more all the time to barely function- just accruing more debts and driving people crazy- what's the point?
I watched my aunt when she had cancer- all the radiation, losing weight, borrowing money for treatments- borrowing plasma from my family. I watched her be embarrassed and ashamed. This athletic fun loving person who had just before been traveling and learning and caring for my grandma suddenly got frail and weak and had nothing to say.
All the pain and the medicine. And then she got better. For years. We traveled. and then the cancer returned. And she decided to use alternative treatment- TCM. The cancer spread to her bones- she went for radiation briefly but gave up and decided to go hame rather than die in a hospital. She didn't ask for money or plasma then. She died an agonizing death. She married a man that used her in fear of dying alone- she left a man in love with her b/c he wouldn.t marry her.
Would the chemo have helped the second time? Maybe. But as I understood it- it was much worse than she told us while she was well- and chemo would have been terrible to endure,too. She was so happy when she was going to that TCM doctor. Maybe it gave her hope, maybe it made her feel better, maybe on some level- it did what chemo could have done without all the pain...maybe it offered the same "possible outcome".
All I know is that I am hardly living. It could be worse- I am grateful for that. I feel lucky to be able to do what I am able to. Before I was diagnosed- I was told it was in my head by one doctor- and the shrink at that time decide I could give up anti-depressants to see if that's what made me sick. It was not in my head and after I detoxed I became a recluse- hiding my sickness. Much like now. Except then- people still tried to visit- came over to check on me. I got sick of watching my friends feeling terrible about my unexplainable illness- sick of watching my friends cry after they carried me out of places I fainted in. so I pushe people out.
And soon I couldn't remember phone #'s or my middle name. I was vomiting so much I had gotten down to about 115- I'm 5'7". And I ended up on the floor for two days hallucinating and throwing up in a trashbag- because I couldn't make it to the bathroom . Finally I followed the directions on the phone when it is left off the hook(I ahd been trying to figure out who to call for help. Phone said"if you need help, hang up and dial 911". So I did.
I was taken to the ER. I didn't know my bithday or social security #. I must have told someone I was off psych meds- because I ended up in a mental hospital after a holding period in which I thought I was being whipped by angels. I was on the floor of some hospital. All I knew was to keep quiet because no one believed I was in pain or sick. The mental hospital was in some county I'd never heard of- I was out of my head in pain- shooting throught my body. They drugged me on thorazine for nearly a week. I had insurance then- I guess.
I didn't know where I was- I thought I had died. I thought that that holding room was limbo- that I was in waiting for either heaven or hell. I thought that I somehow was sent to heaven- or a waiting room for heaven at that mental hospital. Thorazine was scary- I couldn't seem to remember to think or tell people I was in the wrong place... I hid the fasct that I was still vomiting uncontrollably by doing it in the shower. I hid the sores in my mouth.
I thought if I acted relly good I would get to go to heaven. One night I must have puked up all my thorazine- I was alert enough to write on my hand-" dont take medicine" before i forgot again. The next morning when they came to drug me I threw away the pills. By that afternoon I remembered a friend's number and called. i got the name of the place where I was and told the friend. I also told her that I thought I needed to see a doctor that helped bodies, not heads.
I wrote down all I could remember, and the day after that I got the nurses to let me talk to the psych doctor. My friend had told me that I was ill- but not mentally, so I wanted to be tested. The doctor released me that day. I went to a friend's father who was a pediatrician right then and there. I was running a fever of 103.5 and had a kidney infection, walking pneumonia, and was admitted to a hospital for IV antibiotics. Pretty soon I learned that I was not dead- or in a holding room for hell/heaven, just terribly sick.
Within days of antibiotics I was able to recall my middle name and social. After my release from the hospital my friend's dad took me to his house and told me that even though he didn't know why I was so sick- he was going to give me antibiotics everytime I got ill until I found out why. He gave me i.m. penicillin when I got the flu, bronchitis, etc for a few months. Shortly after that I get my diagnosis.
He had me see doctors he knew- allergist/immunologist( said only way I could be that reactive to allergens was if something was seriously wrong with immune system) put me on allergy and asthma meds- then my boss( a neurologist friend's dad got me job with) said she was watching me vomit, faint, injectmyself with migraine meds, get short of breath for no reason, run fevers, etc. she said she wanted me to go get more blood work done- she filled out he lab slips and called my friends dad to let him know. My friend took me the next day - and very soon after I was diagnosed with Lyme.
I went to inf. disease- my boss and my friend's dad made calls. By the time I could get an appointment my hair was falling out and I was nearly hysterical. I never slept- never went out with friends- workedas much asI could.
That doctor told me my friend's dad probably helped save my life- he said he thought I had late lyme and needed IV antibiotics- but to prove for insuranceI needed neurologist to do spinal. He put me on doxy and called the neurologist himself. Right then and there. Three days later in the waiting room of neurologists office I started to throw up and shake and itch - rashes were appearing all over my body. I asked the friend who drove me there to take me home.
My things were packed up because I couldn't afford to live. The creepy guy who lived here said he would care for me while I got treated. But I had to leave Houston and come here. He flew to TX and drove me here- on the road said he thought he'd made a mistake- he didn't know how sick I was until my eyes started pussing and he saw the rashes all over. Until he saw me faint and cry. But it was too late then- I was in oklahoma.
Turned out he thought he was in love with me ( we were childhood friends) until I moved in. Then he threw parties with loud music while I stayed in bed with pounding headaches. by the time a spinal tap was performed- which he dropped me off for but "could'nt "pick me up- I had been on antibiotics for two months( pediatrician sent it to me) double dose.
My dad caame and picked me up from spinal- dropped me off at guy's house and brought me a case of water and some soda for caffine. I was supposed to lie flat for 48 hours. But the guy forgot to put food near me and disappeared. So I leaked spinal fluid for three days until I couldn't move without screaming. A cousin took me back for an epidural blood patch and brought me food that day while I stayed flat. She called my father and explained that I need to be looked after.
He stopped by until I wasup again. When my friends in Houston found out they told me to come back- friend's dad had found more doctors who were "interested in my case". But I had no money. And the guy turned out to be bad news and no help. He had no concept of my situation and didn't care to learn. I had to move in with my parents until I found an apartment(borrowed $) who didn't believeI was ill.
Inf. Disease here decided I was not sick, had adequate treatment if I had been and "good luck with the lingering symptoms". The neurologist here said my spinal showed no infection, and I was making it up. I showed him my western blot. He said- "oh, well- I see that, but that was then, and this is now- and you have some nerve conduction problems, but also fibromyalgia, so you should exercise more, but no repeated motion." He gave me some scripts and sent me on my way. The meds did nothing for me.
One day while in pain and exhausted I called an acupunturist I found in the phone book, He saw me. I borrowed creepy guys car and went. The guy didn't charge me but I found some relief from pain. I tossed the pain /nerve meds.
My friend from Texas came and took care of my cats and apartment that summer. She paid for me to visit Texas with her. I got a blood test for Lyme there- it was low- under positive, so I thought I was better. I tried teas and flushed with acidophyllus. I started to feel better. I saw a psych to help with depression( thought it was "lingering:)
I fell in love. I got a job that paid a lot, and gave it up for a job that I loved a lot. I started to exercise like crazy. The moods swings started up again, along with some symptoms. I couldn't get a cold without being sick for at least a month. The guy ran out on me. ( lots of arguing)
I was heartbroken- and within a few days my nose bled uncontrollably until I went to ER> they never could figure out why my nose was bleeding, but in ER waiting I began to wheeze and cough and vomit. I couldn't breathe- I woke up in ICU hooked up to machines. Prodded by all sorts of people for a few days, I mentioned LYME. The next time I woke up I was talking to a psychiatrist.
He told me that the doctors had called him due to the oddity of all of it. He said that once I was in stable condition I could leave with a script for neurontin... he'd see me when I got out but suggested I find a doctor to research my medical problems. I had my TCM, so I smiled and thanked him.
I still see him. He very good. But he could not make me well. I talked him into trying a lot of meds. I talked him into getting all my medical records to check if I was making up my illness. Apparently I have never been diagnosed by a psychiatrist as a hypochondriac, hystrionic, or anything other than Slightly deppressed with concentration problems.
Besides- I did that stint in the mental hospital. Seems I was checked in because I told them i was crazy. And because I couldn't answer their questions.
so the story goes on from St. louis. Back to inf. Dis. in 2004 on borrowed $ because I was having symptoms similar to 2002. She told me to get a internist or family doctor to help me with managing all my symptoms, to see a cardiologist and get rheumatoid tests done. I did all the above. Then I started working three jobs to try and manage all the hospital bills and debts.
In fall of 2004 I left my night job at a bar because I suddenly couldn't breathe. I went to my car to find my inhaler, got dizzy and confused, then i got dragged into an alley by the blurry person who I asked for help. He and another guy tried to rape me and beat me up severely. I got away and went to the cops for help. (whole other story- they let the guys get away, the bar fired me, and covered up the whole thing)
I was taken to ER and treated. I gave my report, then went to a whole new set of docs. Torn ligaments in my shoulders, ankle sprained and torn in three places, nose broken and cheekbone fractured, sprained hip, kneecap damaged, etc. Put in a cast and unable to raise my arms a bove my head, I quit my remaining two jobs. 5 months later I was back in the hospital with a kidney infection but out of a cast and getting through physical therapy. I will never have the same use of my hip again, but the ankle healed well and my shoulders rarely give me trouble anymore.
So new debts occurred, I took a full time job as soon as I could- not teaching or dancing, but I worked my a** off. I was still always dealing with Lyme symptoms, but I had learned to keep quiet about Lyme. My symptoms got worse and worse until I was hospitalized again in 2005. This would be the event where my internist thought my Lyme was getting out of control, but the inf. disease didn't believeI had it and sent me home.
Again in 2005 i was admitted because of flu, migraines, bladder, pain, etc.
Had the stomach probed ,all the tests possible run. Everytime I got a migaine that lasted over a week until I could barely see I have had to go to ER where I am offered "LP?", and have to endure cat scans before I can leave.
I have borrowed $ from everyone I know- usually when I am getting sued for hospital bills.
The ex who helps me out now is very kind, but very poor. He has helped a lot- giving up many things he enjoys and most of his time.
I will be paying off debt for the rest of my life. I cant ever but new clothes or shoes because any extra money goes to bills,medical,medical,medical. And more are added daily,....
In the summer of 2006 I was playing with a malfunctioning toy and complaining about my life to the helpful ex at a store. The toy shot into my eye and permanantly destroyed my vision. A whole new set of doctors. A whole new job down the drain. Of course, I was still nauseated and vomiting and having migraines and joint pain and respiratory and bladder problems. Funny that I was complaining about how bad off things were when things got worse.
Thank God I had insurance! But still- I could not make this crap up if I tried.
When I had my first eye surgery I thought a lot about karma. I really searched myself to see if I brought things down on myself. I could not believe how ridiculous.
I am not trying to get some one to say "oh- poor you" I hate that. I am simply stating my recent history. This new Lyme doctor has all this paperwork and I am thinking back....trying to remember if a stressful life event has happened...
I am laughing. I don't know what else I can do. I am enjoying a terrific ear, nose and throat infection lately. My eye injury damaged my nerves around my eye, so now I get more migraines. I am short of breath when I talk too long- and my voice has gotten all raspy.
Sometimes I pretend I am in a bad horror movie when I have these bizarre things happen to me. I call it the "tiny exorcist" because sometime these scary things go on- and there is no sense to be made. so I pretend my body is posessed.
In a way, it is. Lyme shares my body with me. Lately it seems to be using the left half. I am entirely numb there, so Lyme must be having a party. And I cant get my left hand to move when I want it to- so there is a possibility that Lyme is not going to give it back anytime soon...
Thing is- I was so relieved when I found out I had Lyme. I couldn't wait to feel better. I went out and got a book as soon as I could. It was great to have a reason for the symptoms.
I mean, yeah, I had been enthusiastic about the lupus, porphyria, hereditary nerve diseases, but- lyme actually tested positive.
Great internist in Houston was going to give me IV blood, vitamin, and antibiotics if I would try it- even though she had no answers. I just couldn't afford it, and then I had no real evidence that IV blood, vitamin, and antibiotics wouldn't make everyone feel better- even people who had nothing wrong. Actually- right around that time I lost that insurance policy, too....
Anyway, I realize that I am venting forever in this. I am sure from what I have read that most of you can relate to running in circles and searching for answers, as well as debt.
I'm fed up. I'm just worn out. I want my body back. I want clothes with no holes, and a lot of other things back. I want my hobbies and my friends. I want sex back. I want energy back. I want my memory back, my concentration. I want time back. Wasted time, hours in waiting rooms and hours just sitting in absolute loss, not knowing where to turn next.
I want to finish school and feel my face and hands,...I want to look forward to a future that has more than doctors and medicines and debts in it.
I want back all the hours of shame I felt for being ill. I want those doctors that treated me like I was wasting their time to give me my money back- they never knew all the hours I spent just waiting hopefully to see them. All the hours I worked, all the hours that paid for their meals and cars and luxury and lives- and they want to treat me like I am such a big waste of their 1/2 hour. The 1/2 hour they knew they would be blowing me off in.
I can research this controversy until I am driven mad by all the injustice, the BS, the lack of research, the stories of peoples' suffering. I am blown away that people can be this sick, and yet be told right to their face that they are not.
so there's risk in treating it, risk in not treating it- and no solid evidence to support either way being right? What works for one does not work for another- by the time most people learn they need long term abx they have also learned that they are "crazy", "that they don't need long term abx", they have been improperly diagnosed in many other ways, they have their lives all messed around and turned upside down.
In my story- by the time I find a doctor who is willing to "listen, research, and care" i am so far past broke I cant find $ to see him. I want a refund from the inf.disease that insurance is going to help pay for. He does not deserve my money. or my insurance money. Neither do the other ones who barely looked at me. I want all that time back and that energy back NOW!
I want the money back now. To give this guy who "theoretically" "might" be able to help. Because at least he cares enough to talk to people. And even if there is no help, no right way,- at least he has the decency to act like a human being. And if someone found relief or help from him, then I'm glad.
What is Lyme doing when it is in "remission"?
Why the h**l are all these people sick with the same or similar thing but there is no answer? Isn't America supposed to be some superpower in the world? How come we can afford to send tons of money into helping other countries, but not into researching and helping some epidemic like this?
I can hardly believe myself when I say I have Lyme. I have been told so much that I don't... It is such an intangible thing.
I am sorry- but If I am no longer able to care for my pets or keep my home or internet, or car, then I am going to slip through the cracks like I am sure lots of people have before me.
I will keep up my happy face.
Posts: 35 | From st. Louis | Registered: Feb 2007
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Frequent Contributor (5K+ posts)
Member # 10375
All I can say after reading your post was "Wow".
What a horribly long road to walk down.
Please don't give up. There are better days and better times coming.
Hold on to God and your relationship with Him.
Take one of your family members with you to the LLMD. Have them meet him and listen to what he says.
Am sending you positive thought and healing prayers and the strength to keep holding on.
This LLMD may be the answer to all of your prayers. You will never know if you don't walk through that door.
I pray that you will find the financial resources to go to the doctor.
I don't think you can put a price on life. It is infinitely precious.
Please let me know if there is anything I can do to help. Just hang in there.....Please!!!
Hey- you are great!*)!! Look at all you have been through- you are a fighter!!!!
You are in a TOUGH place!!!!!!!!!!!!!!!!!!!!
Don't off yourself- Lymeland needs you!!! Seriously. You are one of us!! I believe you!
I am glad you are seeing the doc in SPringfield!
IMO antibiotics are the way to go. They are what I see work and everyone who stays on them gets better that I have seen, better if not 100% well.
I used to be in a late night horror movie really bad quality very B movie- with lots of melodrama- and now I am in a cheesy B movie on LIfetime where I get to go, "Oh honey-" to my loved ones-
I hope things get better!!! I think they will for you if you have a good LLMd and get on the right meds!!!
My plan is if I ever am too broke for a doc is to do what this one woman locally with Lyme induced muscular dystorophy wihch was to self-treat with animal antibiotics from a feed store. She got better. So that is my worst-ever-circumstances plan. But it sounds like you do have a doc- which is good.
Take care- and please don't kill yourself!!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Member # 11129
You are truly amazing!
What a story! You have been through so much!
I understand that disability routinely denies people three times before approving. Keep applying until they approve. They also tend to approve better for some mental health issues than for "mysterious" physical ones, so since you have the "history" for it, you could go that route if necessary.
They have to have a solid medical or mental health DSMIV diagnosis and history of not being able to work for such a long time that most people wouln't be faking it. Not the most compassionate of systems, but its what we've got. See if you can stick with repeating your applications.
What you have been through and are going through is not fair! And its not your fault!
Hang in there. If you can't come up with financial resources at the moment, you do have compassionate resources here on lymenet. I believe you. We believe you.
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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I am so sorry for being so negative and for feeling all sorry for myself.
I am having faith that things will turn out as they should.
I am sure that everyone goes through times of despair and sadness.
I am so grateful for this support.
I had this quote by my bed forever- "It is always darkest before the dawn."
I hope that this is true.
Some of my experiences in life before I got sick taught me to love my life with more passion.
Some things that seemed horrible and senseless have proven to be useful somehow later.
I am so glad that some people have gotten better- improved.
thank you for kindness and encouragement.
Posts: 35 | From st. Louis | Registered: Feb 2007
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Member # 1129
Have 'Lyme Dad' talk to YOUR dad. They have a LOT in common. Then take both your mom and dad with you and SEE the good LLMD in Springfield.
keep applying to ss for disability,its your only recourse at THIS time.
I would be willing talk to your dad too,,,but not as sure as to IF I would be as effective as "Lyme dad,,,check out his story its so similiar from the other side of the fence.
keep your chin up and find the right answers,,,it all starts with an LLMD,,,of which I havent seen where you have seen one YET!!!
You have had your share of ducks,,,cut them out of your life and plans,,,move back home with your parents so they can help you thru all thats required for awhile. It gets rougher before it gets better,,,and parent support of same is necessary.
get your parents on board with this IF it takes getting them to read HERE and get eduacted as to how this stuff works.
Hoping and praying for you and your excellent prognosis IF you see a LLMD!!! but remaining--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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