Do you just rot in hell for the rest of your life or what?
Also, I'd like to have another child, hoping a girl, NOT NOW OR ANY TIME SOON, but someday, if this is lyme, does that mean I can't have kids?
My hubby has a great job, but with 2 cars, a nice house, credit card (almost maxed out btw ($10,000), and utilities, well, we don't have any left over...especially since my illness came on. We've spend thousands on this.
We have good insurance too, but LLMDS won't take them. There is one here in the area, but he seems to take everyone underneath the sun...but mine.
I feel like I have no options. This is getting depressing.
Posted by hcconn22 (Member # 5263) on :
Have you been Dx with Lyme- what about co-infections.
Since a majority of the cost is prescriptions we have been saved by paying for the LLMD and getting prescriptions covered by insurance.
Some people find a open general MD that will follow the treatment protocal of ILADS.
Others buy prescriptions from other countries.
Posted by Tracy9 (Member # 7521) on :
Definitely true, you get treatment based on what you can pay for.
Years into this, we had our car repossessed, are filing bankruptcy, have had phones shut off at times, no money for food at times, our home is being threatened with foreclosure, our car and house insurance was just cancelled....the list goes on and on.
It isn't just the cost of treatment for us but the loss of income as we are both too sick to work.
It sucks, it is just the way it is. There are people who can pay for the most cutting edge treatment and clinics and most of us who can't.
At the very least, an LLMD appt is what we will always find a way to pay for. You really learn what your priorities are. Right now we have had to go to family to pay for those appts.
Before this, we were an upper middle class family. The car that got repossessed was a Porsche.
Now we are trying to get food stamps.
But at the end of the day, all that matters is getting better.
Posted by adamm (Member # 11910) on :
PM sent.
Posted by ByronSBell 2007 (Member # 11496) on :
I know churches are always willing to donate and offer help to you. I know alot of lyme patients being supported by local churches.
Posted by AZURE WISH (Member # 804) on :
Maybe you could find a lyme freindly dr that takes your insurance? If you could find a llmd that would work with one that would be even better.
Posted by Keebler (Member # 12673) on :
-
Nessa,
This is very complex. You do not have to rot in hell. However, unless some action is taken that could actually happen. Not to scare you, but this is a very serious disease (or set of infections) and it can become fatal. Again, I apologize for this message, but it is true.
However, there are many avenues to consider.
I should go back and read your previous posts to see just what you've been dx with - or if you've been dx. - but I'm far too tired to do that right now.
I also don't know your level of wellness right now.
In the Newbie links, there are a few threads about financial matter. Is there a way you might be able to share one car in the family ? Would others be able to help out with that?
I also don't know the level of research you've done.
Ask those in your local support group if there are any MDs willing to work with this. Some are, bless their hearts.
And, as much as I recommend the escape measures and happy talk, you also have to know the enemy. You have to know the life cycle and behavior of the infection(s). If you don't know, you don't know what you are fighting.
I would see what books your library has, see what you can borrow from your local support groups regarding DVD's etc.
There are three major alternative medicine protocols, however, they can all run into some money - FAR less than an LLMD, however.
But if you have a treatment planned a doctor outlined (you did say you've already spent thousands) . . . someone reminded me that Costco has good prices on some meds and you don't have to be a member.
I've had to piece it together for 11 yrs. and I so wish I had had a LLMD at the beginning (or even now). Figuring this out alone is more than a full time job (especially when lying down 30 times a day).
Still, people have gotten better with other methods. Expensive, yes. But, not necessarily.
If you cannot get proper testing done soon, or get to a LLMD, I'd start on olive leaf extract and think of adding allicin. Be careful to buy only top brands with a record of quality. I'd also add at least one adrenal support herb and I'd say cordyceps, ashwagandha or Siberian Ginseng. Probiotics are important, but you can also get that from plain yogurt, miso and brewer's yeast.
Kim Chee, a Korean dish, is supposed to have great probiotics.
And, some liver support (milk thistle). Lyme is a very toxic disease and the liver needs protection.
Get lots of color in your veggies and low sugar fruits like berries. Be sure to get protein with every meal. Eggs and tofu are the cheaper forms (if you can eat soy - there are differences of opinions out there about it, though).
If you could afford no supplement at all, if your stomach can handle it, one garlic clove (the small segment of the larger bulb), quartered and taken in the middle of a meal may offer some help. Careful not to chew the raw garlic or it may burn on the way down. Oil, not water will relieve that.
In no way can I offer an academic sampling of how to do this on a dollar a day. I wish I could.
But, if you take excellent care of yourself, and add what you can, it may help you feel better enough to approach the broader picture.
As for stress reduction and help to detox, I'd love to see the world learn massage so that family and friends can trade or give to those who can't trade back right now.
If you could pay for one lesson from a LMT for a few people, you could learn some techniques. Remember safety around the spine and the neck (back of neck and sides near the arteries).
Find some things you love and that feel your spirit. Nature, music, art books, etc. Make space and time for that as it will help your nervous and adrenal systems.
See if the library has a DVD on a healing style of QiGong or Tai Chi or yoga.
Get all the perfumes and cleaning chemicals out (if you have them) so there is less strain on your body.
And, sleep is the most important thing.
Sorry for just lumping stuff together.
I want to offer some hope that everyone has a chance, regardless. However, be aware that support measures are not enough without attention to the particular infections.
During the plague (oh, I don't know which one or which year) . . . I think it was actually 1918 in the US (and earlier ones in Europe), garlic was one of the mainstays.
An essential oil, called Thieves was used in Europe and there are some records that it helped.
Back to the US in 1918 - one mother with 8 kids made them all eat onions. They all survived while neighbors dropped like flies.
The US government, at that time, actually told citizens not to bother with such silly notions. But those 8 kids are glad their mother put full force to what she had on hand.
I'll see if I can find a citation to back that up - that always helps when one says "really?"
So, as you feel the waves from all angles, know that there is always a way. You just want to find one that has a chance.
Best of luck.
==========
Another thought: do you have any family, old friends who live elsewhere where there is a LLMD who just might be on your insurance plan - if that is a portable plan out of state?
If you are a member of church, perhaps members of that same church in another city could offer a support system for visitors to the LLMD there -- or other civic groups counterparts in a city with a LLMD.
You need not advertise why you are seeking care there, just say a specialist.
I sort of envision a whole sort of "underground railroad" system of neighbor helping neighbor but I know I'm a PollyAnna at heart. Still, you'll never know if you don't ask.
-
[ 15. June 2008, 11:23 PM: Message edited by: Keebler ]
Posted by Lymetoo (Member # 743) on :
Yes, at least the prescriptions are covered. That can be the biggest expense, depending upon the LLMD you choose.
I know you don't have many options there in FL. But keep looking. Maybe you can find someone to prescribe for you.
I know "groovy2" bought most of his meds online without a prescripton.
Posted by Keebler (Member # 12673) on :
--
I can't believe I remember having seen this on a PBS program. I can't even balance my checkbook or cook a full meal with all the food done at the same time - and have energy to then eat.
For some, onions were looked upon as a potential savior. A Pennsylvania woman boasted of serving up onion omelets, onion salads, and onion soup with every meal.
Not one of her eight children contracted the flu.
Meanwhile, a four-year-old girl from Portland, Oregon was said to have recovered fully from the flu after her mother dosed her with onion syrup and buried her from head-to-toe for three days in glistening raw onions. . . .
--
The Spanish Flu is not the same as lyme, true. And, this is anecdotal. Still, it is relevant and, when all other doors seemed closed, seeking simple solutions can bring some answers.
For myself, olive leaf extract is my mainstay. I've a long way to go, but I am so much better with it than without.
-
Posted by Melanie Reber (Member # 3707) on :
Keebler,
I, for one, just want to say that I am very grateful that you are here. Your help is always appreciated.
I was just about to delete all that, thinking it's too disorganized.
Well, guess I'll let that one stay.
I'm glad to have everyone here and I learn a lot. LymeNet is a very unique place. I'm sad for its need; glad for its support.
Thanks for posting that thread.
-
Posted by lpkayak (Member # 5230) on :
yes keebler...melanie beat me to it. wonderful, helpful post.
nessa-i'm pming you
Posted by bettyg (Member # 6147) on :
..
edited to add: KEEBLER IS A KEEPER, and i've told you that privately many times! again and again, you go out of your way doing research for everyone who needs help, and so many THOUGHTFUL suggestions and compassion always!
yes, my newbie package has melanie reber's FINANCIAL BURDENS compiled info and is 25-30 pages, and can be found using EDIT, FIND, and type in FINANCIAL BURDENS hitting enter until you get all the detailed pages. print it out! ************************************************
question for all of you who have been down the road that tracy talked about:
losing everything, bankruptcy, foreclosure, etc.
i've not been that route; we've been blessed to date!
but i have a question and i do not know how to say this, and i hope NO ONE WILL BE OFFENDED.
tracy/others,
if you knew THEN what you know now, would you have:
... moved from a higher class of home to one of an average family ??
... sold 1 of luxury vehicles or got a cheaper car ?
... anything you could have done back then so you would have had MORE money to attack your lyme as AGGRESSIVELY as you could?
again, i have many problems putting words together, and i'm not trying to sound mean, uncaring, etc.
i'm just asking; would you have done a FEW THINGS different to LESSON THE DAILY STRESS of living the good life and having ALL OUT OF POCKET LYME EXPENSES coming at you too?
does this make sense? hope so...
fyi, every night before i go to bed, i pray for all of the lyme community and those of you especially who have LOST EVERYTHING FIGHTING THIS CHRONIC LYME in our lives!
i ask God to bring miracles to you as well... Posted by Tracy9 (Member # 7521) on :
Betty, Do you mean before we got sick? Do you mean living at a lower level to have more of a cushion, or after we got sick?
When we first got sick and began with periods of unemployment, we had our home, cars, all the furnishings, and about $50,000 in the bank. We pretty much lived at our means then, we could afford what we bought, and what we had, and still were able to save a good amount.
So it all seemed to make sense then. We made a lot of money. My husband was Second Vice President at Travelers Insurance, and I was a program director in a major hospital.
Once the downward spiral began, we did everything we could. We sold our $50,000 Denali, and bought a Jeep Liberty. The Porsche was leased, so we were stuck with it until it came to the point of repo.
We used all our savings, home equity line of credit, and maxxed out all our credit cards....mostly to pay bills.
Our home was right for us at the time, we had five children and actually bought a large place in a rural area which was WAY cheaper than a much smaller house in most other areas.
Our 3.9 five year interest rate ended, shooting our mortgage payment up by $1,000 a month. Our home equity line of credit became the only way to pay for LLMD appts, and other living expenses, so that payment shot up.
We got sicker and sicker, until our lowest point of about a year ago when my husband stopped working completely, going from $165,000 a year to absolutely nothing. This was not overnight, he had now changed jobs about five times in the last 8 or so years as his illness affected his performance.
I also went from earning about $75,000 to next to nothing. Though we applied for SSDI, welfare, food stamps, you name it...nothing has come through, so we have existed on family loans, and every penny of credit we could possibly eke out.
This month we sold our son's four wheeler, which almost covered our mortgage payment. We are selling everything we can on Ebay, and have to continue to borrow from family to make ends meet.
The reality is, we couldn't possibly sell our house in this market. And if we did, where would we live? Although our mortgage is HUGE, we are now down to just that and our utilities as our only bills.
We wouldn't be able to buy another house, and without jobs aren't sure how we would even be able to rent. Plus we are FAR too sick to move, and our kids would be so traumatized to lose their home, the only constant we have had.
Being as this would be the worst possible time to sell, we have decided to hang on and just try and find a way each month to scrape out that mortgage payment.
Our plan of course relies on the hope that we will get well, and be able to earn money again, and that one or both of us will ultimately be approved for SSDI.
It is very, very complex, and is an ever evolving picture.
I can say, a couple years ago, I might have thought, I dont' know how to pay for an LLMD.
Now I know it's all relative. IF you have a credit card, any money in the bank, you go out to eat, or have family with any money at all, you can get to an LLMD.
I think it is a matter of reorganinzing priorities, in many instances.
I know now how terrifying it is to really, truly, have NO money, not enough to give your kid money for school lunch. We have been at a point these past six months or so especially I have NEVER been at in my life, and never dreamed I would be.
My son starts school (a secondary technical school) in one month, and I have no idea how we aer going to pay. He had enough money in the bank to get him started, but we spent all his college savings.
I dont' know if this answers your question at all, I guess what I'm saying is at the time, we could well afford the way we lived, and there was no reason to think BOTH of us would go from being good wage earners to being disabled.
Posted by Nessa1815 (Member # 15697) on :
Sorry, I have been very frustrated and I know that it's showing. Everyone here is suffering, in pain, and trying to get better. Then there I am, whining.
This is the beginning of my journey so it feels like the world is just spinning around me and I can't make sense of it yet. I've gotten too emotional.
I think the money part of it is really getting to me. Just this week, from dr.s appts, I will pay almost $150. Not counting the next week, then the next one after that, not counting the IgeneX test I will be ordering. We are upper middle class and this thing that has been going on (not just this, but having to go to the OBGYN SOOO much about the ovarian cancer scare, lymphoma scare and surgery, and now this)has just torn our bank account and savings apart and I feel a tremendous amount of guilt. My husband drives almost 2 hours away to work, works hard, but can't buy a dang thing for himself because I spend every last dime on docs and meds. The guilt. AHHH!!
So, I'm sorry if I seem bratty. I've gone through a whole year of medical scares including the other stuff and it has broken me emotionally.
You guys do inspire me and I'll tell you, when the site was down all day yesterday, I was panicking because I couldn't talk to my ladies. At times, you guys/ladies are all I have to talk to about this. You are a HUGE support system with a ton of knowledge and it's helping me slowly figure out things on my own.
Thanks again for being there for me.
Posted by Tracy9 (Member # 7521) on :
NEssa, You should join us at Lyme chat, it is very supportive and lots of fun, every night.
Tracy9 - your story is unbelievable... I know the feeling. I never had all of the goodies that some people did or do. I still had to go through lots of emotional pain & stress from financial issues & personal things.
I lost my job about 8 years ago, too ill to work, was denied any disability after working for over 25 years, had to declare bankruptcy, rent went up 40% last year, no health insurance for over 7 years, etc., etc.
It's very tough all around in regards to Lyme & healthcare in general in this country.
I really don't know how people manage who have kids. I don't. Somehow you try to survive & hold on.
Some doctors will give patients reduced rates if they know you are ill & don't have insurance. I have also bartered for services (I do some graphic design & websites).
It's the tests that are hard to pay for. Many of them are not accurate to begin with, either. Most of the types of treatments that I want wouldn't be paid for by insurance - so, it's not that big an issue to me.
I've pretty much written off getting any support from the gov't. I get no support from my family. It's rough. I really wonder why we are all going through this & we are living in a "wealthy" 1st world country. I paid social security/disability for over 25 years. It's just barbaric...
Posted by daise (Member # 13622) on :
Hi Nessa,
I remembered you mentioned you had 2 cars. Can you do with one car? I'm hoping that'll pay for LLMD visits!
Or something similar?
daise Posted by Nessa1815 (Member # 15697) on :
You aren't going to believe this.
Last evening I got in a wreck and pretty much totaled my brand new, paid cash for car. Coming home from another doc appt. Talk about depression. $500 deductable. We don't have it.
Posted by steelbone (Member # 14014) on :
personally i would try some cheap alternative that have helped some people..i know a lot of people don't like these methods....but hey u never know...
salt-vit c mesosilver....not very cheap..but compared to llmd prices...it's not bad
good luck
[ 17. June 2008, 12:42 PM: Message edited by: steelbone ]
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Nessa1815: You aren't going to believe this.
Last evening I got in a wreck and pretty much totaled my brand new, paid cash for car. Coming home from another doc appt. Talk about depression. $500 deductable. We don't have it.
OH no!!!! I'm SO sorry to hear this!!
Are YOU OK?
Posted by randibear (Member # 11290) on :
what about going the herbal route? i don't know how much buhner costs but you might want to look up the cowden protocol too.
walmart has the 4 dollar prescrip plan also.
health food stores also have herbs.
my husband and i have been truly blessed. course i manage the money and i'm really cheap....
Posted by Tracy9 (Member # 7521) on :
Wow...that is very scary.
Our house and car insurance were just cancelled on us, we really need to find some quick. We could lose what little we have left if we had an accident!
Yikes!
Posted by lymecaregiverNY (Member # 13287) on :
Dear Ms. Nessa1815;
Before becoming pregnant with Lyme please, please research Syphilis and the horrific stillborns and birth defects that occur in third world countries such as Haiti and Africa.
Syphilis is a spirochete disease and a very close cousin to Borrelia. Both organisms are neurotropic, meaning that they prefer to colonize and, consequently, damage the brain and central nervous system. Imagine your beautiful child born with a severely damaged brain and/or nervous system.
My son was born with Down's syndrome, unrelated to Lyme disease, and I am well aware of the nightmare that a birth defect can do to a child and family.
My wife was infected while she was 8 months pregnant with our third child. He has no birth defects because he was already formed into a baby long before infection. Although he was given I.V. antibiotics in the neonatal unit, he does test positive for Lyme and has had flare ups with the disease. He has no symptoms at the moment.
The antibiotics that they gave my wife did not stop the Lyme from infecting the baby, and the I.V. antibiotics that they gave the baby did not cure him of the disease - that was 5 years ago.
Lyme disease, tick borne illnesses, and pregnancy are incompatible.
Be careful with what you are doing, you are playing with fire, and you've got a very high probability of getting burned.
Godspeed.
Posted by daise (Member # 13622) on :
Nessa,
Are you OK?
daise Posted by hcconn22 (Member # 5263) on :
My wife had five miscarriages when trying to have another child. Now we are past the point age wise where it is likely she will ever get pregnant again.
Can't say for sure if Lyme was a factor, but it definitely ruined our chances of another child.
Posted by sparkle7 (Member # 10397) on :
So sorry to hear that Nessa... I hope you are OK.
This is a sad thread, indeed.
My prayers for everyone out there going through hardships due to Lyme & whatever!
I'm glad we have each other here. Thanks for lymenet! I wish I could afford to contribute some money. Maybe someday...
Posted by Keebler (Member # 12673) on :
-
We need a health care system that is about health care, for crying out loud.
No one should be in the position of having to figure out how to treat themselves as so many are having to do here.
I know that some people get animal medicines when they can't find a doctor or afford treatment. Dangerous? Desparate ? Or determined ?
Let's hope there will be a way for all to be properly treated by brilliant doctors. Let's hope researchers find easier and more complete treatments.
-
Posted by daise (Member # 13622) on :
Keebler,
That's almost an affirmation.
Thank you.
daise Posted by bettyg (Member # 6147) on :
...
nessa, please check in ok; so sorry to hear of your bad accident last night!!
tracy, thank you for your candidness of the questions i asked you; you responded well...yes that is what i was getting at.
think it was daise asking nessa if they could get by on one car NOT knowing she had bad accident with car no. 2.
tracy, have you sent your ABOVE story to your FEDERAL SENATORS AND HOUSE REPS?
to pallone to kennedy to dingle
TO THE "INTERN" WHO GAVE ME HER EMAIL FOR US TO SEND TO THEM FOR THEIR "DESIGNATED STAFF PERSON LAURA" WHO IS WORKING FULL;-TIME ON OUR LYME BILL INFO ???? look in activism ....
previous action alert by BB ???
please do if you have NOT!
it is so sad reading everyone of your personal stories of the good life vs. where you are now!!!
fyi, it is in my and my husband's wills that we are giving money for lyme disease:
1. adult fund for treatments for those who can't afford named after me;
2. LDA ...NJ educational fund;
3. LYME DISEASE CENTER, COLUMBIA UNIVERSITY, NYC for RESEARCH
IF WE DON'T HAVE TO GO TO NURSING HOMES using up what we have been able to save/invest, i hope it's a good start to helping those less fortunate.
we're both very frugal; came from struggling families, and both having "average" jobs.
i know DOC DAVE AKA STYMIE LYMIE has been working on something to help LYMIES NOW!!!! he has many philotrophic friends.
i can't remember the word let more spell it any more!! Posted by Robin123 (Member # 9197) on :
Philanthropic...go, Doc Dave!! - if you can set something up to get Lymies to doctor appts, etc, via a fund/grant system, that would be an amazing life-saving gift here.
Posted by breezywings (Member # 9222) on :
These stories are all so heart wrenching to read. Nessa I hope you are ok?
I know it is hard, but scaling down is the first thing that we with Lyme must do.
Unfortunately, my husband and I can each tell the same story as all of you. It is devastating.
It is barbaric that we all have to live this way because a disease that is treatable, REAL and infecting so many is STILL being kicked around the medical community as an "eh" type of illness!!
Sometimes I get so disgusted with this. Our government needs to see what is not only happening to our bodies but our finances and lives because of their ignorance and unwillingness to help.
Okay, rant over. Sorry.
Tracy, your story just bought tears to my eyes.
For all of us that suffer all the effects of Lyme.....may we find the strength to make it just for today.
Posted by madge (Member # 13704) on :
it's so funny how much we all are going though..when my hubby go sick 6yrs ago we were in pretty good shape money wise..then he could't work any more..i did but it was so hard...kids grown and looking forward to retire and enjoy life...well we look forward to DR. appt. and hoping for one good day...God Bless all of you...and thanks for being able to know we are not alone...
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