posted
The good news is that I am on my husband's insurance for the first time since we have been married and have not had good insurance that actually paid for anything in over 15 years. The
bad news is is that it only pays for a dr visit to a dr who doesn't know how to treat me(with a copay of course). The deductible is $4000. Who has this kind of money except the rich? I am
feeling like I have been strung along to live a little longer for nothing. My new llmd prescribed for me glutathione eye drops for the first time since I have had this blindness and begged for
treatment for my eye, someone has paid attention except Walgreens didn't get that and in fact it is though my bcbs card is expired or something. I am not on file when they put in my card. They look at me like I am trying to use an
expired card. I was also prescribed Coartem and should be taking it right now with the full moon. To buy it out right is over $200. The insurance is suppose to charge a $20 deductible.
It didn't cover the new lyme dr and it won't cover their labs that I need done there which are over $400 and he won't make another appt to continue until I get them. I need to have more paperwork for medical to give to my
disab. lawyer in two weeks but won't be able to give him any because I don't have the money to go get this done. Such a catch 22. We have maxed out and borrowed from people. It is a slow miserable death. I am so tired of running into a wall.
I know most people on here have to deal with the same crap too and I am just venting once again. I am so tired of taking into my body those things that it needs to continue for my heart to beat.I need to accept the dead end road and just accept my fate that is death. I can accept it, I just want it to be quick.
[ 03-09-2015, 06:39 PM: Message edited by: sickofthepain ]
Posts: 294 | From southwest mi | Registered: Dec 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I am so sorry but not surprised.
I dont have answers. I am angry about the way things are. I dont know what your history or sx are
I know 200 mg of doxy a day helps but does not cure my eye probems. It is possible that could hurt you in someway too...but i was desperate and got it without prescription...fish doxy. Its the same as ppl doxy
Also a regular opthalmologust told me to use 1000 mg flax oul a day for eyes and it helps me a lot
Some on herr have said flax is bad for ppl with lyme...but i have learned to use what helps me. We are all so individual...as are bugs
There are protocols you can get without doc or ins that keep the load down. We ate not even sure at this point if the best llmds know how to cure lyme
I use buhner and if i buy cut and died herbs it is only a few hundred dollars a year. There are other protocols and rife
Good luck to you. I am often very angry at whole system. Im older and have fugured out a lot abiut what i need to do to survive.
But i am looking at a sad future of watching children and grand children and great grand children fight lyme with such a screwed up medical system
Im gonna go scream...i dont think i will see this resolved in my lifetime
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Your last lyme doctor was not any such thing, from your description. Prayer does not cure lyme. It may help people to cope, but pathogens require medicine.
Sorry about your situation. Doesn't sound like your insurance is much good. But then even people with better insurance have run into a wall with payment for lyme treatment.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
It doesn't sound like my new lyme dr is that big on antibiotics, just fixing your immune, but.... when you are tending to wounded soldiers shouldn't you be throwing an occasional grenade to keep the enemy from blowing down your fort?
I did a few months of doxy with the last, 1 mo. of zithro, 1 mo. of flagyl and the amox with the doxy. I have done so many herbs on my own. I have been willing to try anything.I have still been open to getting some that have been prescribed but the wall is there.The money is gone.
[ 03-09-2015, 06:40 PM: Message edited by: sickofthepain ]
Posts: 294 | From southwest mi | Registered: Dec 2012
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posted
Bcbs managed care evidently got my birthday, which is this month, mixed up with November. How does that happen? So that is why I could not get the prescrip. I still haven't got it and don't know
if it will be covered with a copay. The dr wrote down on my sheet that he was prescribing the eye drops but evidently never did. I called the drs yesterday and left a message. No call back and
they are closed today.Today is Migraine Day.Only get them now about once a month thanks to my mom's cholestyramine that she gives me. That has taken them from 50% of the month to a few days a
month and has kept me thus far from jumping. At first the niacin was helpful but then it quit as you know things like to do.The migraines make it hard to do anything.Really smell ammonia. It's esp behind my bad eye.
I have a never ending stye in my good eye and that was how my bad eye started. I swear if someone doesn't figure this out soon, I will be blind.I have done the mangosteen, 2 bottles and a huge bag of stephania root making my own decoctions to no avail.
I know errors are made everyday, including my own, and people are human, I just wish that I didn't have to deal with this so often. It's stressful and I cannot handle stress at all.I had a melt down trying to
get to the drs the other day, driving myself through bad weather for 3.5 hrs just to discover that I had mapquested my eye dr appt for next week. Thankfully the staff on the phone helped me find my way there. I said I have been on the wait
list for 5 mos., got there 30 min early to discover I went to the wrong place. I still got there on time but then the fun began when I left, called my husband to help me find my way back and I turned off on a
highway and went opposite directions several times. He was confusing me more so I decided to not talk until I made it home and just tried to figure it out.Had to apologize for yelling.
Highly highly stressed. Would not make a good bus driver or taxi driver.Really, I don't even care for driving anymore and I used to love to drive.
Posts: 294 | From southwest mi | Registered: Dec 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I just want to clarify what i said about doxy above. I am not saying 100 mg a day of doxy would treat lyme. My eye doc said itwould treat eye infection
Eye doc is not lyme literate. My eye sx are extreme dry eyes, bad blurriness that comes and goes, sometimes crusty dischargeandpain and itchiness
I feel it is related to lyme. All i know is if i take one doxy a day i dont have to deal with that sx
I just realized i wrote 200 mg in first post. I meant 100 mg. Thats all it takes for my eyes
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I was on doxy for a couple of months and amox. It didn't seem to make a difference but the amox does help take the eye pain away when I get it, just doesn't help vision. I do see another eye dr next
week. His reviews look like mr grumpy so here is hoping. He is a referral from the 2nd eye dr I saw who is more skilled in eye disease. I don't know if he knows lyme. I guess we will find out.
It could be the ketes in my eye or I am also thinking maybe it is strep or a virus.I have become color blind in it. I mostly see squiggles, blurry, white light and movement. I cannot make
out detail, cannot read out of it, see faces. If all I had to see was that, I would tape my eyes shut although I still see this crazy stuff then too. I just have to block it out, kind of like the tinnitus which can drive you to insanity. I
see bright orange when my eyes are closed and I am startled by a noise and have a glowing green night light effect at night after the lights are off and I close my eyes. It seems like there is a light somewhere in the room but isn't.
Posts: 294 | From southwest mi | Registered: Dec 2012
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"Really smell ammonia. It's esp behind my bad eye.".
Do you take L-glutamine? If so, is it fresh and are you taking it with penalty of water? If not, it can cause an "ammonia smell".
For the coratem... and I had to use a zip code so I put in one for Traverse City, cause I don't know yours.
24 tablets of Coartem 20mg/120mg (brand)
Target View store details 114.18 with free coupon Get Free Coupon
Meijer Pharmacy View store details 114.18 with free coupon Get Free Coupon
Walmart View store details 115.14 with free discount Get Free Discount
Rite-Aid View store details 153 est. cash price 118.55 with free coupon Get Free Coupon
CVS Pharmacy View store details 130 est. cash price 118.68 with free coupon Get Free Coupon
Walgreens View store details 141 est. cash price 119.72 with free coupon Get Free Coupon
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Here is the cortex's patient assistance program info...
Novartis Patient Assistance Program for Specialty Medicines 1-800-277-2254 Fax: 866-470-1750 (if the application is faxed it must be sent from the physician's office)
Download the Novartis PAP Application for Specialty Medicines
Enrolling in the Novartis Patient Assistance Program for Specialty Medicines is quick and easy.
You can participate in a brief phone screening to help us understand your needs.
You or your physician can call Novartis at 1-800-277-2254, selecting the appropriate phone prompts, or you can download the above application.
You will need to complete all patient and physician sections of the attached application. You will need to attach an original prescription for the requested medication (refills may be included).
Please attach a copy of your household's most recent year federal tax returns or financial documents.
Please include your annual out-of-pocket medical expenses on the application.
Mail or fax the application, prescription, and financial documentation to the address above.
NOTE: Patients who need treatments from multiple treatment areas must complete enrollment processes in as many areas as applicable.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Here is the "Help For You" page on one of my sites that lists a lot of ways to help, like with TBD testing costs, meds, supplements, free phones, etc.
What does this mean- your quote... " I need to have more paperwork for medical to give to my disab. lawyer in two weeks but won't be able to give him any because I don't have the money to go get this done."
posted
Thanks so much Tincup. I have it written down and bookmarked. I did go to Walgreens last night and even though my insurance still hadn't changed my
birthdate, I told them what it said it was and it was still going to be $60. It is for three months. That is not bad I just don't have it so I said I will have to get it later plus you are
suppose to take it with the full moon and I think last night was the end. He didn't give me a prescip but just sent it there.I will call Novaris on Monday. I am also suppose to do a
23andme so he can look at that and figure out a plan for me. I am sure detoxing is a big issue for me as it is for most on here.I wish I could be making some money and then I could pay for
being sick. The ammonia isn't from taking anything because I can have days where I only take the naturethroid and it is still there. I sometimes take aminos and it probably has it in
it but I haven't taken them much lately. I do like lcarnitine and ala. What I mean by the lawyer part is that I need to get labs done and he won't schedule me for another appt til I get them.I need to be able to take more paperwork(from drs)
to the lawyer or I am afraid he is going to drop me. I am appealing the denial. It would be nice if you could get disability the moment that you need it to help you get better if possible
instead of falling down the hole so much that you are on the brink of bankruptcy.It makes me mad to think about all that I have paid in and they make
you beg. The lawyer that I have right now said that he had a woman last year die while waiting to hear and social security sent her a denial saying that she could still work.
Posts: 294 | From southwest mi | Registered: Dec 2012
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posted
I am so sorry about your eye problems and all you are going through to get the most basic medical care.
I have the same problem with a high deductible (2000.00). It is like not having insurance but still paying a premium.
I can so relate to people saying the most stupid things about Lyme and how to cure it, always with the subtle implication that it is our fault.
A couple weeks ago, I went to the acupuncturist and I practically had to crawl there I was so sick with Lyme, co-infections and ill effects of Levaquin.
She asked about diet and I admitted to her that I don't eat vegetables because I have had an aversion since infancy.
While I know this is bad, I didn't expect that as I lay there with needles sticking out, she would scream:
"You are not going to live very long!"
Then for good measure, she added, "And if you didn't have Lyme, you'd have something else!!!"
Posts: 71 | From La Quinta, CA | Registered: Jun 2012
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posted
That is pretty bad. You are paying to be yelled at. The Inuit people don't eat vegetables either but you may have to change your diet to match the other things that they eat.(whale, seal, berries and seaweed) haha
It does help to talk on here. Calms a person down and talks him/her away from the edge. It gets so frustrating trying to get well when you feel like your hands and feet are tied, mouth and eyes are covered and you still need to produce.
Posts: 294 | From southwest mi | Registered: Dec 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Inuit people ate more plant life than we might think. During warmer days even with short summers, they would eat green plants, of course, when they could and green plants were / are abundant sometimes even just under the snow.
They dug roots and also harvested all the edible vegetation (plants, berries) they could, dried it, preserved what they could and had it then during the winter. Even twigs could make nutrition teas.
Locales would vary, of course, in some of the offerings but their early diet was much more rounded in nutrients than the watered down folklore poses. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- smokingsky,
No health care provider should yell at you, especially during a session where you should be very calm & centered.
Still, in a very calm voice, it is really absolutely vital to eat vegetables.
You say "that I don't eat vegetables because I have had an aversion since infancy." (end quote)
Not sure how you've survived this long on (?) just protein & fat but guess that you must be eating at least 6 servings of fruit a day to make up in some way with calories, substance / fiber and nutrients. But you don't say so it's hard to know.
Still, that can be far too much sugar for the body. Yet, if no fruit or not up to at least 6 servings a day (in lieu of veggies), the colon will not have what it needs to take the trash out of your system. Plants are what do that. And better to have less fruit and mostly veggie.
So I hope you can find a way through the issues about vegetables. Plants are life. Plants give us life.
There may be some medical reason you avoid vegetables, yet whatever the reason, I hope you find the right helper to work with you past the roadblock.
Lyme really attacks the mitochondria in our cells. Green plants are required to help. Without healthy mitochondria, all kinds of nerve damage can occur. Please hug a plant, kiss it . . . and - gulp! -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- smokingsky,
While the marinades here may not be the best for us, there are others we can create. Interesting information:
Lesson 2: Why Some People Hate Vegetables + 7 Ways To Overcome It
Excerpts:
. . . there's an interesting reason why they're the common dinner villain, and having an understanding of it can really help in overcoming vegetable resistance. . . .
. . . Since children in general have more sensitive taste buds than adults, designed to protect their more sensitive digestive systems, they're not fond of bitter flavors.
When you look at it that way, it's not really very surprising that kids don't want to eat their vegetables.
As you grow up, it's common that foods you disliked as a child aren't so bad, and you might even grow to love some of them. Since your digestive and immune systems have gotten stronger
(theoretically – in reality, they may be damaged, but that's a whole other topic.), your taste buds won't react as violently to, say, broccoli. . . .
. . . For some, the aversion to vegetables continues into adulthood. It could be that they simply never learned to like them, or it could be a special sensitivity to the bitter compounds in vegetables.
In fact, some people are just genetically programmed to dislike vegetables.
The good news is that once you understand why vegetables don't taste good to you . . . .
Here are 7 easy ways to reduce the bitterness of vegetables and hopefully end the battle over eating them. . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Because nutrients matter so much to my cells, food has been of particular interest to me - especially since dropping all packaged foods about 15 years ago.
It's been like a huge discovery, real foods. So I can get excited to share how vital good nutrition is to our ability to get better. And also about taste, how we can create fabulous foods for ourselves.
When my previous computer died, I lost my files. I had found a splendid article about how Inuit found plant life even under the frost layer. I can't seem to quickly find that with a simple search. But the one below is interesting.
To put to rest the myth that Inuit did not consume plant life . . . and also how they planned and had very important steps to compensate for the challenges & still get key nutrients.
They knew the importance of nutrients from a variety of sources, even if they had to skip around to find other ways to get what they needed.
- By Stephanie Butler - History.com - January 3, 2014
Excerpts:
. . . Wild berries, including strawberries, cranberries and even more unusual varieties like salmon or moss berries, grew in abundance in the summer months, and the Inuit dried these berries for use all year round.
Seaweed was also a useful vegetable. Surprisingly nutrient-dense, cooks added it to soups and stews, and even dried it for eating as snacks.
But berries and seaweed could only go so far. And, as it happens, organ meats have a much higher percentage of vitamins and minerals than muscle meats of the same animal.
The Inuit diet was saturated with the organ meats of whatever large game and fish could be hunted; moose, caribou, seal, whale, walrus and even polar bear.
Most of this meat was eaten raw, to further maximize the amount of nutrients a diner would receive.
If meat was cooked, it was generally boiled as a kind of soup along with some native roots for extra fiber. The cooking liquid was eaten as well, to provide even more nutrients. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I like to have veggies in soup. I make a number of yummy soups. My mother in law also got us a vitamix for Christmas so we can make our own veg. fruit/herb drinks too.My adult kids won't eat them
either.I wish they would. The other day I made up some quinoa with onions, red bell pepper and broccoli and sprayed some braggs aminos on it. It was flavorful.I know I am digressing but I don't care.
Posts: 294 | From southwest mi | Registered: Dec 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Diversion to good food is always a nice trip. Here are some soups for everyone to enjoy:
over 50 reader reviews, a near perfect composite 5 star rating.
One reader notes: "Conducive to almost all specialty diets out there! GAPS, Paleo, vegetarian, gluten free, dairy free, real food......you name it, you will find a lot on this book for you." -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
When I was in treatment, my LLMD sent me to Labcorp for most of my blood work, and insurance covered it that way. He was out of network of course, but Labcorp wasn't. Might be something to check into.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Thanks for the idea. My insurance will pay for it after the deductible. I did do the one set of labs(will bill me.ugh) but the labs for their office are over $400
that I am suppose to get and they are money upfront. I am also to do the 23andme. I am just hoping something will come up. I don't know what.
Hoping for a miracle.I still owe from the last visit. I only paid $30 and it was over $200. I don't think they will just let me pay another $30.
To the rest of the people in the world reading this who are not sick and have never experienced this, this stinks. We don't like being in this kind of position. We like to work and pay our way.We don't like feeling like we
have the flu most of the time. We don't like having to beg social security disability to give us some crumbs for which we have paid into.
[ 03-09-2015, 06:43 PM: Message edited by: sickofthepain ]
Posts: 294 | From southwest mi | Registered: Dec 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I use soups and stews a lot too. This year i started adding a lot of cinnamon, ginger and cloves to soups you normaly wouldnt add them to. I notice parasites leaving for 24 hrs after i eat these soups
Every little bit helps
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- lpkayak,
Sounds delightful (well, the soups, I mean!).
Do you have some of those recipes - or are they from a certain book - or even if inspired by a certain country / region. Sounds Moroccan.
Cinnamon in dark leafy greens works really well, too. The other things you mention might, too.
Ground coriander on Parsnips is delightful. -
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I like to have veggies in soup. I make a number of yummy soups. My mother in law also got us a vitamix for Christmas so we can make our own veg. fruit/herb drinks too.My adult kids won't eat them 
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