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» LymeNet Flash » Questions and Discussion » General Support » So, what DO you do when you run out of money for treatment? (Page 1)

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Author Topic: So, what DO you do when you run out of money for treatment?
Curiouser
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No seriously. We're flat broke. Can't afford the lyme doc anymore. I have enough meds left for one more week of this protocol and that's it.

We 'might' be able to afford the herbs for the Buhner protocol sometime next month, but even that's iffy right now.

So what have you done when you've reached this point?

Welcoming any and all suggestions as well.

--------------------
If you don't know where you are going, any road will take you there. - Lewis Carroll

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Wimenin
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If youve got insurance, go to your hmo dr and beg for doxy, or any abx theyll give.

Free clinics?

You might want to take cheaper natural supplements (olive leaf extract, oregano oil, other herbs, etc instead of abx).

Talk with state about filing for disability?

Perhaps look into finding a lyme book that lists alternative protocols that dont use abx? Vit C and Salt? ...or..exercise to herx?

I dont have any concrete answers, just brainstorming...

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lpkayak
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years ago i did the refinance thing for myself

my sister who can barely work just tries to eat as healthy as she can and do the lifestyle stuff that doesn't cost much and she uses as much of a general supplement that will kill a bunch of the bugs as she can (now its purple defense-but there are others)

lots of people i know-just tuff it out and get worse or pretend they don't have it and get worse or go back to regular docs and do what they say for the symptoms cuz ins will cover that

me??? i live on very little money-scaled way back for my retirement/disabled years and buy my meds / supps first. i live in a tiny house and in the winter close it down except for 2 rooms. i also visit people (kids, relatives) for long periods of time to save utility bills-i go south cuz i live way north. i can stay reasonably healthy on brown rice, veggies-fresh or frozen, and chicken breast i buy in bulk when on sale. sometimes i eat this for all meals. its cheap.

this is not how i planned to spend my last years...but i do find something positive and fun that makes me feel good each day...music? a flower...a book...something.

--------------------
Lyme? Its complicated. Educate yourself.

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psano2
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If you want to try a relatively inexpensive treatment that can help a lot, get a tube of Venex ointment from www.dancingbeeacres.com

it costs about $30 and is very powerful. You can't use it if you are allergic to bee stings. It contains melittin, which has been shown to have powerful inhibitory effects vs Bb. Even though it's just a topical, it's helped me tremendously.

I understand that Dr. Klinghardt uses bee venom injections in his practice and credits it with restoring his health.

The cautions up front are not to use it if allergic to bee stings and there was an in vitro study (petri dish only) which showed it also has strong hemolytic qualities, so could cause hemolytic anemia.

There are no studies on human beings, and many people have used it without problems, not just me.

You can do a search here for it, and I know a couple other people have posted on having success with it, Bejoy, Sparkle, and another person as well, I believe. This is where I got the idea to try it.

It's personally made me feel so much better, and I've been on multiple antibiotics for over 3 yrs.
Patti

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sutherngrl
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Ask family or freinds for help. Beg doctor to give samples. I would do whatever I could to continue on medication.
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cactus
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Have you spoken to your LLMD to let him/her know why you're stopping treatment?

S/he might have some suggestions for you. Maybe even samples etc to help get you through for a while.

We refinanced as well, to pay for treatment. Not the best way to go, but it's what we had to do.

--------------------
Did you ever stop to think, and forget to start again? - A.A. Milne

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blaze
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I'm in the same boat. My car failed inspection. All the useless trips to specialists drove my insurance premium up. Winter is coming, and with it, come heating bills.

So I'm playing the lottery. Afterall, the Bible says anything is possible with God.

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randibear
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i still say this sucks!!! i have amoxy and other stuff that's sitting in a plastic box in the back of my cabinet...and why? i've had reactions to all this crap and can't take it.

i tell the doctor and he says oh well let's try again...IDIOT....

i can't flush it down the toliet and i can't throw it in the trash....so what are we supposed to do????just let it accumulate and hope someday that we'll use it...yeah, right....

there has to be a way to help people who can't afford stuff. whether it's giving them supplements or those free meds that montel willliams talks about..

lyme disease is too serious to just ignore someone who needs help but can't get it....and the pharmacies and doctors need to cut the cost of these meds....it's ridiculous....

i read one report that it was costing about 10 cents to make one of these meds and we're being charged almost 100 dollars for that pill.....so who's making the money? they are, and who's loosing? we are, big time....

lame people, lame..........

--------------------
do not look back when the only course is forward

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James Marschner
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I have asked friends...mainly family fopr help.

I was dragged off and put in the psych ward after/during a rage attack.

My parents began to help me w/ a place to live and money for doctors since there's no way I can come close to working.

However, after 4-5 months...my family lost their ability to comprehend what lyme/Bart is all about. NOW THEY ARE DISGUSTED WITH MY LAZINESS AND BELIEVE I AM SIMPLY A HYPOCHONDRIAC.-jUST LIKE NON-LLMD'S WOULD TEND TO SAY.

I am completely broke now. I have no money for food, or Dr's anymore, and cannot get a job in my field of cytogenetics.

When I apply for a job at McDonald's..they don't take me seriously, so I can't get a CRAP JOB either now!

I filed for disability and my lawyer said it would take a minimum of 2 and 1/2 YEARS to get aid. I said I'll be dead by then!?!?

I'm starving/wasting again now.

I qualify for IV abx I guess...but I won't be able to pay for it now.

My insurance premiums are way out of reach now.

I can't decide if I would rather have an illness that kills you quick...or this disease that doesn't kill for decades and makes you feel like death?

My apartment will evict me soon and I will have to sleep in the woods, or a homeless shelter?

I hear your pain...wish I had the answers.

I'm thinking that there simply aren't any answers for those that are alone against this/these diseases.

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pryorka
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Depends on your situation. If you're living with family and they take you to your appointments (meaning you don't have any assets that can be confiscated) then take out as many lines of credit as you can and use that. Apply for everything now because when you start defaulting on things you won't be approved for much new credit.

Use that until you can get back on your feet and get better, then file bankruptcy.

This is what I'm doing but I don't have a car or a house or anything worth taking. My credit will be ruined but hopefully my life won't be...what other option is there really.

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sparkle7
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It's so sad to read this. I feel your pain. I've been through it all with the loss of job, bankruptcy, no insurance, no money for health care, not being able to keep up with rent increases, etc.

I think there are options if you look into alternative medicine. I've posted what I have done alot... I'm sure people are sick of reading it.

I did get relief from using the LightWorks. It's not for everyone. I'm going through a very stressful period right now - so, I've been holding off on continuing. I do think it works, though.

I'm not doctor - so, I don't want to give advice on what to do - medically.

There are ways you can get well without depending on drugs or expensive natural therapies. I can't say that they are a cure but I've been feeling alot better.

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Parisa
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I don't mention it lightly because you have to really do your research but there have been some who have treated themselves with veterinary meds. Do a search and you will pull up some threads.
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randibear
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how can you treat with vet meds if you don't have a pet?

i know it's illegal to give other people your meds but, man, we're wasting a ton of money...

--------------------
do not look back when the only course is forward

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Tracy9
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Pryorka said:

"Depends on your situation. If you're living with family and they take you to your appointments (meaning you don't have any assets that can be confiscated) then take out as many lines of credit as you can and use that. Apply for everything now because when you start defaulting on things you won't be approved for much new credit.

Use that until you can get back on your feet and get better, then file bankruptcy.

This is what I'm doing but I don't have a car or a house or anything worth taking. My credit will be ruined but hopefully my life won't be...what other option is there really."

EXACTLY what we have done. We knew we were going down, and we stocked up on everything we could, bought everything we needed while we had a little credit.

One thing I can't understand is how anyone who is so broke has to worry about insurance premiums...if you are broke; you should completely qualify for Medicaid in any state. I dont' understand those who posted about that part.

We used all our equity lines of credit, kids college savings, all our savings, cashed in all our 401ks, and sold everything we could. Our car got repossessed, but we reached a point where we realized none of that stuff really matters.

We have asked family for help to pay our mortgage some months and our LLD appts.

We are always selling things on ebay, and have two persian cats we bred and sold the kittens.

I always save meds I dont' need. Without implicating myself, many of us here are very generous in sharing what we don't need.

Please post what meds and supplements you need, in case anyone has ideas for you...... wink.

--------------------
NO PM; CONTACT: TracyWill9@yahoo.com

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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hcconn22
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When reading I thought Dizzyup was my wife. Basically we have been living with the same story, but are not getting State Insurance and food stamps.

We used to make over 200K a year so it's all quite humbling. I would have never applied, but my wife did it all. At first I was embarrassed , but now I think that that is what public services are for... people like us that have paid our taxes and been good standing people-- that now need help due to illness.

If there was better research, and more investment in Lyme we and many others would not be in this place.

Also not that I think this is the best- I do know of some that order meds via the internet from other countries for cheap. Also some find others that share... quietly.

Apply for assistance.... people need to know that there is a HUGH hidden cost of Lyme on society.

--------------------
Positive 10 bands WB IGG & IGM
+ Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest

And still positive ELISA and WB two years after IV treatment
http://www.lymefriends.org/profile/blake

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METALLlC BLUE
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You sell everything you can, your home, your car, you take out whatever loans you can. You run your credit into the ground, and you go bankrupt if necessary. You ask people online to donate, you ask your local church, your local social services, you apply for disability, food stamps, personal care assistance, you apply for medical insurance. You ask if the doctor can do a payment plan, even if it takes you a long time to pay. Visit a local sperm bank, donate your eggs. Create something if possible, write a book, sell your soul.

You beg, if you must. If you have to live out of a box, you do it all. Exhaust every single possible option you can, and when you've done that, you ask people for "more" options.

When you've literally done it all via legal routes, and there is nothing left, you turn to illegal routes. You ask other patients for medications. You self treat using your local library and other free resources to educate yourself in medicine.

A lot of people don't agree with me or think I'm being illogical, but trust me, when you're desperate enough like I was, you'll even steal and lie if you have to, to get the drugs you need.

That's what you do when you run out of money. What you "don't" do, is accept that you're all out of options and give up. If you do, it's game over.

****, I would do almost anything, except quit.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: sbauzys@comcast.net

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Keebler
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-
There are many ways to make money or cut corners. Many good suggestions here.

As mentioned somewhere above - as for selling sperm or eggs, however, due to the unknown aspects of lyme, it could pose a risk for a new life coming into the world. Could also pose a risk for the mother to be.

I think every child deserves to have the very best chance at health. We have so much more to learn about how lyme affects the next generation from both father and mother.

Anyone who has ever had a history of babesia is not supposed to give blood again, so that is also a concern. There's more than lyme going on for most patients.
-

[ 12-30-2015, 03:03 PM: Message edited by: Keebler ]

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Annxyz
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I feel your pain. Many of us are self treating . the docs in TX say you can have only 28 days of ABX , even though many acknowledege this will do nothing to a spirochete ( I bet a lobbyist for an insurance co is at the root of this issue ) .

Sources for meds : 4 corners Pharmacy , doxycycline , minocycline

Many vet meds available like bicillin substitute , vet doxycyline ( I think the chicken doxy is cheapest ) and vet bactrim .

Others order bactrim or doxy from Mex Meds
and have had no problems . Vet meds , and online pharmacies can sustain a lot of people here w/ few resources. PM Bejoy and ask her about her treatment . Groovy2 has had to do a lot independently also . I think he can refer you to people who were in dire straits also .

Andrographis, oil of oregano , vet bicillin ,
generic bactrim can be found . It takes work , but lots of folks here have done it.

Many others did have $$ but kept relapsing and went to rife like Ernie , who finally got well . That is what I intend to do eventually .
You can keep trying even if you have no doctor to work with .

Our entire med system is collapsing . when we were little children , people went to docs or hospitals and did not lose everything they had worked for all of their life for treatment of a disease . Bankruptcy follows serious illness commonly for many middle class people , and the trend is accelerating exponentially . When health care became a for profit industry , and the " free markets " were supposed to work out everything in " competition" , something went WRONG ! Now health care is becoming limited to only the perfectly healthy or the very affluent .

we have to ask ourselves if it should be a for
profit commodity that is only available for wealthy people or those who are healthy . It has not always been that way !

Remember to cast your vote for the candidate who you feel has a realistic health care solution and a believable commitment to the folks who are desperate . That is if you can make it to the polls. I was too ill last election to get there . But, like Scarlet , " As God is my witnesss" I intend to cast a ballot for one who does seem to take the crisis seriously .

There are lots of people here self treating . Honestly , sometimes it seems those with $$$ and doctors do not have the best luck with this disease either . It is such a crap shoot .

--------------------
ANNXYZ

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Tracy9
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Metallic Blue,
That is the best response I've ever seen. I totally get it. You articulated all my thoughts better than I possibly could. That is exactly what I have been trying to say!!!!

[bow]

--------------------
NO PM; CONTACT: TracyWill9@yahoo.com

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Rianna
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My heart goes out to you

Here in the UK patients friends set up charities for them to continue treatment, could that be an option??

Also there must be an LLMD that you can contact to see if they can help you, send all of them a letter saying your situation - I would

I personally had to move to spain as the medicines were a fraction of the price of UK/USA and you do not need a prescription for anything in spain, therefore you dont have to pay a doctor to write your script. I know that is not an option for you but in the USA can you not get your meds outside of the USA?

Rianna

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Curiouser
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Thank you all for your replies! You've given me a lot to think about.

I'm so sorry. I guess the term "flat broke" is relative and we're not as bad off as some. My heart goes out to those of you who have given up so much.

Hubby's still working, but he's among the "walking wounded" and we're not sure how much longer he's going to be able to bring in an income.

At this point, savings are gone, cards are maxed, and we're having to rob peter to pay paul when it comes to paying bills.

We have insurance, but it's not all that good and we end up having to pay a percentage of all medical expenses anyway (testing, procedures, hospital stays, etc).

That "percentage" adds up too stinkin' fast, especially considering I've been in the ER 4 times and in the CCU unit once this year.

Guess the next step will be selling off one of the vehicles (we have 2) and getting a home equity loan, if we can get one.

I went through my stash of everything and found some antibiotics left over from previous protocols and a few bottles of Cowden stuff. Guess I'll work with those until we can come up with some sort of medical or financing alternative.

I left a message for the lyme doc a few days ago stating why I had to terminate treatment. Haven't heard back from them yet.

Really feeling like I'm in limbo right now.

Thank you all again!

--------------------
If you don't know where you are going, any road will take you there. - Lewis Carroll

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METALLlC BLUE
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You're on the right track. You'll find there are a lot of options, but the hard part is having the will to survive, in order to see them through. Do you want to live enough to give up everything if necessary? Are you willing to exhaust every single possibility to do so?

If yes, then you'll find a way.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: sbauzys@comcast.net

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Shosty
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There are Lyme literate doctors who are covered by insurance. If these MD's are out of state or out of network, very often insurance will be compassionate and pay. The Lyme Foundation in Hartford, Ct., used to have a list of LLMD's who took insurance, and who work with PCP's. Get a PCP who is open to this, as well.

Personally, I do not think it is worth giving up everything for Lyme treatment, because there is no guarantee of getting well, no matter what you do. I was away from this board for 3 years, and some of the same people are still here.

I also wonder if any of the people who have posted in this thread have kids. I can't imagine getting care that results in my kids being uprooted from their home. Lyme doctors outside the insurance system are so expensive. Even if I had wanted to go to an LLMD outside the insurance system (which I often didd), it just was not an option.

Alternatives of all kinds are also expensive. To be honest, I have foregone most alternatives until very recently, because the needs of our children took whatever funds we had (and not just health need, but college, dance, music, food, heat, gas etc.). Recently, I have been trying to do some alternatives, but I tell every doctor that our funds are limited, and they tailor their suggestions to that. A simple thing like trying a diet for food allergies is FREE and can make a difference for some.

I think that Lymenet in general needs to think more about financial matters in the suggestions on here. Living in a shelter is not going to help anyone's health.This board is often hostile to some doctors who are covered by insurance. For a situation like yours, or for a situation where someone is starting out with new, acute, or early disseminated disease, the LLMD's who take insurance are a good place to start.

The advice here on LLMD's can set "newbies" up to end up like some of the posters here, sometimes with little health improvement to show for all those thousands of dollars.

So, anyone starting out, it might not be necessary to re-finance or eat pasta all week or whatever to get your first stab at medical care for Lyme. It is smart to start off with affordable (covered) options.

It sounds like some of the posters here have no insurance, jobs that don't provide insurance, or no jobs period. Are there state programs, or local programs, available to you in order to get insurance? This is a big national issue. I do not mean to offend anyone who does not have insurance, with anything that I have written. Everyone deserves insurance!

So, everyone, PLEASE vote! You can apply for an absentee ballot (anyone can apply for you, or bring the application to you) and then the ballot can be mailed to your house. Illness should not disenfranchise anyone, and we need better governmental policy on health, which will only happen if people vote.

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randibear
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it would help if you could tell us what meds and regime you are on.

that way we could suggest alternative meds or something.

just a thought.

--------------------
do not look back when the only course is forward

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troutscout
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What Mike...Metallic Blue says....is almost all of what I did...except the illegal drug thing....go read Mike...go read.


Trout [Wink]

(PS...a year ago....Insurance stopped my IV and was dying....and at the same time.....I fought back...I mentally denied the disease access to my psychi.....and I went after IT. In the end....I am still broke today...but I made MORE money in the last 12 months than any 3 years combined in my adult years.)

--------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
www.iowalymedisease.com
[/URL]  -

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blinkie
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Lots of good suggestions here. Also, some meds are cheap, like doxycycline.

Can someone tell me, how would anyone know if we were giving meds away, if we do it privately? I know it's illegal, but who would really know?

There are a lot of programs that can help that have been posted on this site. You'll have to do a search. Also, contact the drug manufacturers, they sometimes have programs for low income.

If I had to cut anything out, it would be the highly expensive and restrictive diet first. You can still eat really healthy on a small budget, but you don't NEED to eat gluten free, for example. Meds are far more important.

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sparkle7
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I thought alot about this. I took abx for 8 months & then I decided to stop. They weren't helping me. I know some people say you have to take them for years. I just didn't think they were making me better for a number of reasons.

One, is that your immune system is in large part located in the gut. If you kill off all of the beneficial bacteria - you're immune system can't function properly.

My case is different than what others may be suffering. I don't think I have co-infections. I also was undiagnosed for 9 years. People diagnosed sooner may have a better chance with abx.

If you want to try herbs, you can call Nutramedix. They used to have a program where they supply the full protocol for 6 months for free if you apply through your doctor.

This may be helpful for some.

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METALLlC BLUE
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As far as Medicaid goes. Apply through your local social security office. You go down, get an application, ask if you can speak to a representative, and find out what you need to do.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: sbauzys@comcast.net

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lpkayak
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just be careful when sharing meds... be careful of expiration dates-checking your liver-allergies... i know we gotta do what we gotta do-but please be careful

--------------------
Lyme? Its complicated. Educate yourself.

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Tracy9
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As for sharing meds, pm. You could publicly post that you are in need of a particular med, or publicly post that you are no longer using a med you were, and others can read between the lines and pm.

Shosty said:

"Personally, I do not think it is worth giving up everything for Lyme treatment, because there is no guarantee of getting well, no matter what you do. I was away from this board for 3 years, and some of the same people are still here.

I also wonder if any of the people who have posted in this thread have kids. I can't imagine getting care that results in my kids being uprooted from their home. Lyme doctors outside the insurance system are so expensive. Even if I had wanted to go to an LLMD outside the insurance system (which I often didd), it just was not an option."

I just want to clarify, most of us are not in this situation just because of getting Lyme treatment. The cost of treatment is the tip of the iceberg.

We are in this situation because we are too sick to work. That already places you in the positions described, and then treatment costs are on top of that.

We do have kids. Right now, kids are being uprooted from their homes due to foreclosure every day, with this economy.

Just being sick throws you into these dire straits for many of us. I think once you are already on your way there, you realize nothing else matters but getting the best medical care you can so the rest of you life doesn't continue to go down the crapper.

--------------------
NO PM; CONTACT: TracyWill9@yahoo.com

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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pj1954
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heres a way to help I found this on public health alert


Lyme Disease
Educational Resources


Featured Lyme Book


To apply call toll-free 877-296-HOPE (4673)
Much Needed Prescription Assistance Available!
Financial Burdens Eased by Prescription Hope for Those Who Battle Chronic Illnesses
by Dawn Irons
The physical burdens of someone battling a chronic illness, such as Lyme disease, are only "the tip of the iceberg" of concern. Much like the iceberg that took down the Titanic, there is much more of a problem lurking beneath the surface of the water than just physical burdens when dealing with a chronic illness.

Financial devastation is a common thread among those who battle long-term illness. Insurance companies will often deny coverage for medically prescribed treatment protocols. This leaves a patient having to make some very critical choices. How does one treat the illness if the medication prescribed is not attainable due to prohibitive financial costs?

Hope is on the way!

Prescription Hope, located in Columbus, Ohio was founded by Mr. Douglas Pierce in 2001. The goal of the company was to develop a program to assist low income people who could not afford their medication, an opportunity to purchase affordable prescription drugs for medical maintenance purposes.

Currently more than 80 pharmaceutical manufacturers provide more than 1,500 free brand-name prescription medications to individuals who qualify based on annual income. The problem is that

most of our citizens who may qualify have absolutely no idea on how to apply, or even know these programs exist. Realizing the problem, Mr. Pierce's company, Prescription Hope, created a specialized program with a Medication Access Network.

"We are the largest organization that provides such a service to our less fortunate citizens. Once a person contacts Prescription Hope, our enrollment counselors take over. Our enrollment counselors will obtain from the individual and their doctor all necessary information to determine eligibility. This includes obtaining financial information, medical information from the attending physicians, then submit the data to the pharmaceutical manufacturers for approval. If not approved, our enrollment counselors will advocate on behalf of the patient to get what we feel the patient deserves, their medication," said Pierce.

"You would think a program such as ours would be costly considering what is involved in determining who may be eligible. Believe it or not, there are no upfront charges. There are no other medication fees, no application fees and no other hidden fees. The only cost to qualified individuals is $7.00 per month per prescription. The average person today on maintenance drugs will be using 4 different medications. At $7.00 per prescription, the monthly cost would be $28.00. Conservatively speaking, if a person were to purchase the drugs retail the cost would easily exceed $250.00 per month," explained Pierce.

Prescription Hope has been in operation for more than 8 years and are finding that they are being contacted by social services and charitable foundations as well as other organizations from all over the United States. They are providing a service which cannot be matched.

Specifics About the Prescription Hope Program:

(1) They provide brand-name medications. They access brand-name drugs via U.S. pharmaceutical company patient assistance programs, giving them access to almost 1,500 different pharmaceutical drugs for their patients.

(2) They provide an A-Z "value-added" service. Each pharmaceutical company establishes its own rules and guidelines. Information required to qualify varies from company to company and assistance is very limited on the guidelines and procedures. This is a very time-consuming program. This can cause a great deal of confusion and frustration for those individuals trying to implement the program on their own. Due to the difficulty of completing and maintaining the required paper work, forms and the never ending red tape, only about 3% of those who apply on their own ever receive a medication. This is where Prescription Hope comes in. Prescription Hope has years of expertise on how to handle all the different pharmaceutical companies requirements and will complete all the requirements needed to implement the program.

(3) They check with the appropriate manufacturers upfront for availability and requirements. Once an application is submitted to Prescription Hope, THEY act as the Enrollment Counselors. THEY complete the paperwork, work with each patient's doctor to verify prescription(s) information and sign off, THEY send the paperwork to the manufacturers, THEY track the paperwork and resolve any problems which might arise, THEY keep refills ordered. The $7 service fee per prescription per month that they charge is more than worthwhile to insure that you actually receive the medications that you are eligible for. Their specialized software and dedicated staff usually can access every single medication that you are eligible for.

(4) As Prescription Hope is not affiliated with any drug manufacturer or the Government, they receive no outside subsidies or financial help. The federal government subsidizes the drug companies by providing tax credits.

(5) Prescription Hope is a much-needed service. The government's Medicare Part D initiative so far has been very costly and confusing for many seniors. If you are eligible for free medication programs, usually you are better off to enroll (or stay) in these programs rather than participate in Medicare Part D. Under Medicare Part D, seniors with monthly premiums each must pay a portion of each medication cost; and there is a gap in coverage (the notorious Donut Hole) where people must pay the whole 100% cost of all their medications.

``Dear Prescription Hope, I'm truly grateful for your help. I've been wasting away for over a year without any kind of financial assistance. The state won't give me benefits because I don't have children and the federal government has denied me SSI benefits twice now over a span of 2 years. I was really beginning to give up. After working since I was 15, I felt like I was tossed aside. My doctor is a great Physician as well as a wonderful human being and he will help me. I in turn will pass along your information to anyone who needs it. Lyme is dehumanizing, at the very least, so I vowed to help others in anyway possible. I just got all my prescriptions last week thank you, talk about timing, but will get my doctor on board for my refills. Brightest Blessings, Elizabeth, California''

This is welcome news for anyone suffering through a chronic illness! It is not uncommon to meet a family that is battling an illness where their monthly medical expenses have exceeded their mortgage payment. With all the other issues that face the chronically ill, financial destruction should no longer have to be one of the stressors that can impede the road to wellness.

To apply call toll-free 877-296-HOPE (4673),
or go to http://www.prescriptionhope.com
to learn more about the program.

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sick
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If you live in Iowa you apply for Medicaid at your local human services office in the courthouse.

sick

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Keebler
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-
I'd advise first calling to see what the requirements are to qualify for medicaid. In some states that will differ. Some states have waiting lists to even apply.

Each state likely also has a website that outlines their Medicaid rules, sometimes even a county might have some stipulations that other counties do not, at least the requirements for personal assistance.
-

[ 12-30-2015, 03:05 PM: Message edited by: Keebler ]

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Shosty
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Tracy,
I haven't been able to work either, and one of my kids was not able to go to school for a few years. I get that.

I am just saying, that there are no guarantees for health no matter what LLMD you see. People are talking about spending $5000/month on Lyme.

I am only suggesting that people who are going broke, or are too broke to get optimal treatment, or have kids, or whatever, can get at least some treatment through MD's who are covered by insurance, if, of course, they have some insurance- at least not bankrupt themselves.

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sick
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It seems like there are several different plans for getting free medications if you qualify but what good does it do you if you can not afford to go to a doctor to tell you what you need?

Are there any plans for going to a LLMD for treatment when you can't afford it.

Medicaid or insurance won't help when most of them do not accept it.

sick

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sick
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Tracy9

When you are that broke you can get Medicaid but it will not pay for the doctor visit unless you find a doctor who excepts it. That is very hard to do.

If anyone has found a doctor who does I would sure like to hear from them.

On the other hand it does pay for the medications which is a big help.

sick

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randibear
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contact those people privately and respond to their messages. they might have suggestions for you.....please.....

--------------------
do not look back when the only course is forward

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groovy2
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Buy meds in Mexico-
Much cheaper than in US--
No Script needed -

also look at MedsMex.com-
No script- I have used them several times-jay-

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MariaA
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manufacturers' Patient Assistance Programs for free medication (your doctor has to apply, or read about the program above, I don't have any actual experience with this myself):

Here's a list of patient assistance programs listed by manufacturer:

http://www.edhayes.com/indigent.html
article about the programs (written a while back, for AIDS patients):

http://www.aegis.com/pubs/atn/1993/ATN18602.html

I looked up online the PAP's for a few of the expensive meds I've taken over the years and they're covered by some of the programs, even stuff like Welchol (I don't know if the manufacturer would approve it for 'offlabel' use for Lyme toxins or not, but it's listed in their program as one they provide). I didn't find much that indicated that the doctor would have to justify why exactly they're giving a medication.

Manufacturers seem to have a cutoff limit of something like 180% of poverty level, which makes a lot of you guys in the above thread eligible. I scanned through a couple of articles online about PAP's (they're often written for AIDS patients whose medication costs are truly staggering and have been for decades) and it sounds like they're sometimes fairly easy to get onto.

I don't know if the anti-Lyme prejudice in the medical community would work against us, of course, as I haven't been on one of these myself.

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

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Tracy9
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I guess in CT Medicaid is good, maybe better than other states. Of course it does not cover my LLMD, but that is all I have to pay for. It covers my PCP, all tests and prescriptions at 100%. Paying for an LLMD is far less than what I was paying previously for monthly premiums and copays on meds alone.

So just having to cover the LLMD is a huge help. It seems it is the meds that cripple a lot of people financially.

--------------------
NO PM; CONTACT: TracyWill9@yahoo.com

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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1WearyChick
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My question is why does treatment cost so much? Why is it that mostly the doctors who do not accept insurance are reputed for lyme treatment? Are usually the ones recommended to treat?

If we all sat back and thought about it.......surely there would be a different outcome.

I have been sick for almost three years, several dx's before lyme.........spent tens of thousands of dollars.......wasted tens of thousands of dollars.........profited many MDs/NDs. I will not do another uninsured treatment protocol again.

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METALLlC BLUE
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Insurance companies often report doctors to the medical board if they decide that extended treatments for Lyme Disease outside the norm are costing them too much money.

Additionally, many don't accept insurance because they can treat you with your best interest rather than what the insurance company is willing to pay. The treatment you receive with insurance coverage will be different than that which you pay out of pocket in most cases.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: sbauzys@comcast.net

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Melanie Reber
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Just an FYI...PLEASE do NOT consider donating ANY body part to science or elsewhere for money.

TBDs have been recovered in all body parts, organs, fluids, etc. We would hate to pass this on to anyone else.

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sick
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Tracy9

Yes, I agree getting your meds paid for is a big help---BUT what good does that do if you can't come up with the $200, $400, $700 or whatever your doctor is going to charge for a visit. Without a script from your doctor you can't go to the pharmacy to get your meds.

And if a person looks around many of the drug companies will give you free meds anyway if you qualify which I am sure a lot of people would. So what we really need is a way to pay for our doctor visits. So far I have failed to find a way of doing that.

And you said Medicaid pays for your tests. Does it pay for the tests ran by Igenex? That is absolutely wonderful if it does. If not what tests does it cover?

Do not get me wrong. I am not picking on you in any way. I am just trying to figure out a way so many of us can get to our doctor for a visit which we so deserperately need.

Does anyone out there know of any programs to get people the help they need in paying for their doctor visits?

Also it seems like so many of us are traveling for so many miles. I think we should work together more to get there. I'm not sure how we could do that other then sharing rides and maybe motels--but that would really be a risky thing to do when you didn't know someone.

I just think we should be smart enough to get together and figure out something to get things done. We all are in such desparate need of getting help and we are only going to get worse if we don't do something. We can go on for months telling our stories and yes I agree sharing helps but it really isn't getting us any closer to what we need. I have just failed to come up with some way of doing it. Surely there are people out there a lot smarter then me with ideas.

Honestly many of us have been sick so many years already that we need to get things turned around and start getting better now or the damage that has been done will not be able to be stopped.

sick

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seekhelp
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Are you saying your Lyme treatment has been unsuccessful?

I agree uninsured items can be so costly!

quote:
Originally posted by 1WearyChick:
My question is why does treatment cost so much? Why is it that mostly the doctors who do not accept insurance are reputed for lyme treatment? Are usually the ones recommended to treat?

If we all sat back and thought about it.......surely there would be a different outcome.

I have been sick for almost three years, several dx's before lyme.........spent tens of thousands of dollars.......wasted tens of thousands of dollars.........profited many MDs/NDs. I will not do another uninsured treatment protocol again.


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randibear
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even without insurance i'm sure my llmd would work with me.

i would at least continue on medications or try the herbal route.

there are many options available to you.

--------------------
do not look back when the only course is forward

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sick
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ranibear

Is there a way to get meds without a sript from your doctor?

sick

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Curiouser
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The initial panic of our current financial crisis has passed and I've had time to do some thinking.

I'm probably going to get yelled at, but here's what I've decided to do....

I'm going to be taking a break from all meds for awhile. This is for several reasons.

The main one being financial, but I'm also uncomfortable self-medicating without a doc to supervise.

The other reason is I've suspected the meds have been causing some of my symptoms and I want to see what my baseline is. I simply don't know what's causing what.

So I've decided to go off meds for a month and see what happens. After that, I'm planning on doing Humaworm and seeing what that does for me.

Once I'm done with the Humaworm, I'm going to do the Buhner protocol until I can find a doc I can both afford and work with.

I'm considering seeing the absolutely horrible (supposed) LLMD I'd originally seen before finding my current one. Why? Because he's 3 hours closer and takes insurance.

I'm hoping since I'd been previously seeing one of the best LLMDs in the country, this idiot will finally take me seriously.

Our insurance is changing in January and we won't have to pay the percentage of all testing, procedures, etc. anymore. Copays for drs visits and meds are also less. This will definitely help out.

So that's the plan.

Thank you all so much for your input on this. I really do appreciate the time and concern you've offered. [kiss]

--------------------
If you don't know where you are going, any road will take you there. - Lewis Carroll

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fatigued15
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Does anyone on medicaid get their IV meds covered?
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METALLlC BLUE
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I don't think a "drug holiday" is a bad idea, to be honest with you. It's a good decision, but I don't think I would go with the B-Protocol, but this is only my personal opinion. I think the Zhang is far more effective when followed correctly.

-- Mike

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: sbauzys@comcast.net

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Tracy9
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Yes, my medicaid covers all IV drugs, including Tigecycline.

Sick said:

"And you said Medicaid pays for your tests. Does it pay for the tests ran by Igenex? That is absolutely wonderful if it does. If not what tests does it cover?

Do not get me wrong. I am not picking on you in any way. I am just trying to figure out a way so many of us can get to our doctor for a visit which we so deserperately need.

Does anyone out there know of any programs to get people the help they need in paying for their doctor visits?

Also it seems like so many of us are traveling for so many miles. I think we should work together more to get there. I'm not sure how we could do that other then sharing rides and maybe motels--but that would really be a risky thing to do when you didn't know someone."

YES, Medicaid paid 100 percent for all my tests, SPECT scan, nerve conduction study, EMG, MRI, all labs from MDL, Labcorp, etc.

IGENEX does not take insurance directly, so that one I have to submit to my insurance company.

I agree with your ideas about working together. In fact, today a fellow Lymenetter from Kansas is arriving at my house in CT to stay while her daughters receive testing in NYC over the next ten days or so.

She and her two daughters will stay at our home for free, we will feed them, and we will loan them our car each day to drive to New Haven and catch the train into NYC.

We would gladly do this for anyone else. We have done it before.

Working together is great. I'm hoping to see it happen out here for the Bionic 880.

--------------------
NO PM; CONTACT: TracyWill9@yahoo.com

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Tracy9
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Sick asked:

"Is there a way to get meds without a sript from your doctor?"

Yes, many people have self treated by purchasing their medications from Mexico, New Zealand, etc. There are several people here on the board who can help you if that is the route you are looking for.

Another option that has worked great for us is to get our PCP to prescribe what the LLD recommends. Granted, we are lucky to have a PCP who will do so, but it is possible.

--------------------
NO PM; CONTACT: TracyWill9@yahoo.com

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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LymeCFIDSMCS
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When I was the most broke I have been, I went to a low-fee clinic -- most states have at least one -- and told the doctor what I was already taking and that I could no longer afford my meds (this was before Lyme though).

We had a long talk about it, and then she took me into a hallway, opened up a cabinet, and pulled out this huge bag of drug samples and just gave me almost the whole bag.

Doctors often have a lot of samples hidden away, and sometimes they have even forgotten about them and need to get rid of them before they expire. Sometimes it just takes really direct communication to appeal to them.

So definitely don't discount the drug sample idea. Sometimes doctors are low-fee clinics are more aware of financial issues and more sympathetic to complicated diagnoses. You never know.

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Tracy9
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Totally agree. My PCP has gone so far as to contact a drug rep for me and have him bring in samples, just for me, before I got the Medicaid approved.

Also, to follow up on Metallic Blue's awesome earlier post, I went from a high functioning, Masters Level working woman running a highly renowned program (which by the way I founded) at a major Level One Trauma Center teaching hospital, with excellent credit, to:

Current Credit Score: 450

How I really paid for IGENEX testing: I wrote a bad check

Just the tip of the iceberg, there....

--------------------
NO PM; CONTACT: TracyWill9@yahoo.com

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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MariaA
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I got myself pretty much symptom-free (with occasional 10-day relapses that were usually triggered by candida or by treating my high mercury with chelation) with the Buhner Protocol. I"d done 6 months of oral antibiotics, instantly relapsed, and then did about a year of Buhner herbs and I got better with it right on schedule.

Very, very annoyingly, I've since then been re-infected, with what I think is mostly babesia, and even though I went on antibiotics as soon as I was tick bit, I'm sick again. Though it doesn't completely prove that it was the re-infection alone that did it, I think it's most likely not a failure of my original protocol and actually something new, from what my symptoms were.

So, anyway, even though the Buhner Protocol isn't completely cheap, it does work well for some people at least for the Lyme alone. I know several people who've used it and have kept symptoms at bay or have had much improved response to antibiotic treatment. If you can afford anything at all, either veterinary antibiotics or (and/or) the herbal protocol may be better than just taking nothing. It works on many organs and systems, not just on killing spirochetes- there's a lot of inflammation support and collagen support in there, so it's definitely worth doing if you aren't getting treatment some other way.

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

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Lou B
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Hi LymeNet Users,

I "featured" this Topic, (stuck it at the top of this forum) based on a suggestion fron BettyG, because it contains a wealth of useful info related to
"So, what DO you do when you run out of money for treatment?"

Out of $$$, Needing treatment ... BIG problem, so,
Read and learn ...

[ 26. October 2008, 10:40 PM: Message edited by: Lou B ]

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Lou B
 -

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seibertneurolyme
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I haven't seen what I would consider one of the cheapest ways to treat yourself mentioned -- buying powdered herbs and encapsulating them yourself or making herbal decoctions (teas). A caspsule filling machine is very cheap. Often a pound of herbs won't cost much more than a bottle of prefilled capsules.

If I had no access to antibiotics this is what I would do. Hubby was on the Buhner protocol by itself for 4 months at one point and in my opinion it at least kept him from getting any worse. May even have had some positive effects. And he had already done both IV Rocephin and IV Primaxin at that point.

Personally I think the Buhner protocol is a viable option for at least short term treatment. And if you don't think herbs are strong enough then I suggest you take just one andrographis capsule and see if you don't herx.

In my opinion the Buhner protocol from the Healing Lyme book is probably the cheapest option available.

I think it can be of great benefit for Lyme. Not so sure it will work for Babesia. Used to not think it would help with Bartonella or BLO -- have rethought that after hubby tried stephania root.

The Zhang protocol may be a better option for Babesia or Bartonella, but it is more expensive as the herbs are proprietary formulas.

Some have had success with the Cowden protocol and NutraMedix herbal tinctures, but I am pretty sure that would also be more expensive than encapsulating your own herbs.

Or you could always try the herbal formula Spiro Kete from Kroeger herbs. This may work better on viral issues as the main ingredient is monolaurin or lauricidin from cococnut oil.

Most all of the herbs in these different protocols can be combined to find what works best for you individually and usually there is very little interaction between the herbs and antibiotics.

This is not medical advice, just my opinion based on hubby's experiences.

Bea Seibert

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METALLlC BLUE
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Great post Bea. I hadn't considered that.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: sbauzys@comcast.net

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efsd25
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I hear the pain! My family has the same issue, we all have Lyme and the costs just add up. The solution for myself has been Buhner Protocol (about $200/month) and a rife machine. The rest of the family is on abx. But to saved money I use rife plus Buhner.

The rife machine is literally pennies a day after the initial cost of a few thousand. For about 3 years I used the rife machine only. The doug coil appears (for me)to be the most effective for the money.

Neither Buhner or rife will cure Lyme, but can keep symptoms at bay until a cure is discovered.

Hope this helps.
Ernie

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Shosty
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Curioser, I think you are making some great decisions.

Taking a break from meds can help clarify things.We found the antibiotics themselves had caused leaky gut and all kinds of symptoms that we had been attributing to Lyme, were actually new food allergies resulting from the leaky gut problem.

I again want to say that there are adequate- I didn't say optimal, although some are very good- LLMD's covered by insurance. This board sends parents to Dr. J., and adults to various Lyme specialists who are outside the insurance system.

I think we need to be more accepting of the need for some people to see doctors inside the insurance system, if finances dictate that is the only choice, besides no treatment. For anyone new, the Lyme Disease Fdn. in Hartford,Ct. provides names, or it used to.

Given bottom-line adequate antibiotics is a start, and further treatments can be tried later, including alternatives. Following this path will help many avoid the financial disasters described here.

Metallic Blue, I do disagree with your post. There is a good chance that Lyme patients can spend thousands and thousands of dollars and not get much better, frankly. Especially if you are of certain genetic types.

Achieving a modicum of improvement is necessary of course, but some of us just have had to accept that we have a chronic illness, and that, actually, it could be a lot worse.

I have kids in college. I cannot give them what they need and pay for expensive Lyme doctors and treatments. I certainly could not move them into a shelter so I could feel better. That's just the way it is. I'm sure there are others like me out there, many others, and I think Lymenet needs to have a few alternative voices every once in awhile.

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HaplyCarlessdave
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When I was battling lyme it was indeed expensive. I couldn't do all the treatments my doc advised me to do, but I spent alot of time looking around for solutions at support groups and the internet.

For example, you may be able to avoid the $$atovaquone$$$ by taking artimisia anua and artimisinin for babesia. (I needed to take both, but I don't have a spleen, which makes babesia very serious) And there are "needy meds" programs of various sorts-- but I would have needed some serious help doing all I needed to do for those that I found out about- thus I completely used combis of orals. (you might have better luck, though?)

I took lots of supplements. But I couldn't get the most expensive ones- and just told my doc that. I mean, we live in 'amerika' --kind of like bosnia, when it comes to health care.... I just maximized my chances and battled the lyme on every front I could. Nowadays at least I'm on 'medicaid', but now I better not get lyme-- they'll buy you 3 weeks of doxy, if that, and that's it. (also they only get you medieval dental treatment- that is with bad teeth no crowns or bridges; they just get the pliers...)
DaveS

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ldsucs
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Mexico...
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MariaA
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Here's a direct link to the powdered herbs from the Buhner Protocol that a couple of people have suggested. please read the Buhner book before ordering- for instance, he recommends red root as a tincture and boneset as a tea, not a capsule form:

http://www.1stchineseherbs.com/lyme_disease.html

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

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drewby
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I don't understand how treatment could possibly be $5000 per month.

Oral Doxy is like $50 a month. Antibiotics are pretty cheap. An office visit once a month is like $200?

What exactly is $5,000 a month??

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Parisa
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Try adding in:

$750 a month for Malarone (not covered)
$70 a month for probiotics
$250 a month for supplements
$100 a month for RX copay for several meds

There's more. This is just tip of the iceberg.

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catalysT
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Depends what drugs you are on. There are some really cheap and reliable overseas pharmacies that do not even require a prescription. PM me if you need more info. Even so, you should still visit an LLMD. Maybe you could visit them every 3 months or something.

There are lots of good suggestions before me too, azure blue was right about making money anyway you can. What good is life when you have no health to live it with? But of course, things can be easier said than done. Anyway I wish you and anybody else in the struggle the best of luck.

--------------------
"You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum

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Zelante
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Has anyone with chronic Lyme successfully receieved Social Security benefits? I realize that these may take a very long time to receive but are well-worth it I am sure.

I am considering applying but would like more information from those who have been through the process.

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Lisa Duffy
Western MA

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bettyg
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i referred newbie lisa to start her own post in support on SSDI issues for input and gave her my page nos. of my newbie package detailed ssdi info.
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HaplyCarlessdave
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quote:
Originally posted by drewby:
I don't understand how treatment could possibly be $5000 per month.

I you've had lyme for long, you may have to have IV antibiotics. And if you are unable to walk there may be expense from wheelchairs, medical assistants, etc., that kid of stuff adds up real fast!
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TheCrimeOfLyme
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Shes from PA where I am. Here in PA, you wouldn't want to call Social Security to apply for medicaid, but you can call them to apply for disability!

You want to call your Department of Public Welfare. Since I live in Westmoreland County, I would just call the one in Greensburg which is in my county.

You call them and they can MAIL you an application. You fill out the awfully large bibled sized packet of questions and mail it back in.

COPY YOUR MEDICAL BILLS AND SEND IT WITH THEM. That will help get you qualified. I can't remember if you said you were married or engaged, but if you are not married- you and your fiance will have to apply separately.

Also, send in any copies of bills/checks that you DID pay ( again that will help).

Medicaid ( if you get it/are eligible) will pay for everything pretty much except your LLMD visit. medicaid won't reimburse you for anything you have paid thus far though.

And it is based on your income and resources. You have to meet their income guidelines and can't own tons of properties, etc. They don't count your main home that you live in ( if you own it) as a resource.

And yep, they pay for IV meds, if you get a script and what not.

--------------------
You want your life back? Take it.

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Limping Lily
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I understand what everyone's going through. MY situation could be worse than some of you. I live in a decrepit house with no furnace,stove,or bathtub because my estranged husband wants to punish me for past mistakes.I have to buy my own food,etc.,PLUS I support my youngest who has insulin-dependent diabetes.I just went to social services yesterday to find out that I can't get any financial help because they combine incomes if you're still married.I can't get divorced because I don't have the money,but I don't qualify for free legal, BECAUSE they combine incomes for that! It's a catch-22 situation. I can work part of the year, but now that seasonal work is done, my money is ruunning out and I have a hard time dealing with the winter, physically. I'm a little better lately, but without continued treatment, I'll get bad again.It's a rouugh road............

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~*~ Carole ~*~
 - Young at Heart Grandmother of 4

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Parisa
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Limping Lily,

Maybe a women's shelter could help you?

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troutscout
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Lets see.....$13,500 in bills last month alone.

Yep...that about sums it all up.

trout [Wink]


Fighting back...one spirochete at a time.

--------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
www.iowalymedisease.com
[/URL]  -

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JKL
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Most people are not aware, but you can get meds from overseas pharmacies that are very cheap. If you are well versed on your treatment and can guide your med choices and dosing choices, you can get cheap meds from overseas, mostly India. They are generic but authentic and good. I have much experience with that, mostly with psychiatric meds. A lot of people from a psych forum I attend do that. You can import up to a 90 day supply of personal use per shipment, with each shipment taking about 2 to 3 weeks in the mail. FDA and Customs rules are not black and white, so they tolerate it just fine. As long as the meds are not controlled substances such as narcotics, benzodiazepines, or stimulants, shipments go through Customs smoothly.
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IMHisda
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Curioser:

Just some ideas. Havn't gotten to this point yet but maybe the salt and C protocol would be the least expensive?

--------------------
RV

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