This is topic So, what DO you do when you run out of money for treatment? in forum General Support at LymeNet Flash.


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Posted by Curiouser (Member # 14128) on :
 
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.
 
Posted by Wimenin (Member # 15294) on :
 
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...
 
Posted by lpkayak (Member # 5230) on :
 
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.
 
Posted by psano2 (Member # 11711) on :
 
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
 
Posted by sutherngrl (Member # 16270) on :
 
Ask family or freinds for help. Beg doctor to give samples. I would do whatever I could to continue on medication.
 
Posted by cactus (Member # 7347) on :
 
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.
 
Posted by blaze (Member # 16838) on :
 
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.
 
Posted by randibear (Member # 11290) on :
 
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..........
 
Posted by James Marschner (Member # 13073) on :
 
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.
 
Posted by pryorka (Member # 13649) on :
 
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.
 
Posted by sparkle7 (Member # 10397) on :
 
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.
 
Posted by Parisa (Member # 10526) on :
 
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.
 
Posted by randibear (Member # 11290) on :
 
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...
 
Posted by Tracy9 (Member # 7521) on :
 
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.
 
Posted by hcconn22 (Member # 5263) on :
 
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.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
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.
 
Posted by Keebler (Member # 12673) on :
 
-
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 ]
 
Posted by Annxyz (Member # 9097) on :
 
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 .
 
Posted by Tracy9 (Member # 7521) on :
 
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]
 
Posted by Rianna (Member # 11038) on :
 
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
 
Posted by Curiouser (Member # 14128) on :
 
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!
 
Posted by METALLlC BLUE (Member # 6628) on :
 
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.
 
Posted by Shosty (Member # 12232) on :
 
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.
 
Posted by randibear (Member # 11290) on :
 
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.
 
Posted by troutscout (Member # 3121) on :
 
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.)
 
Posted by blinkie (Member # 14470) on :
 
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.
 
Posted by sparkle7 (Member # 10397) on :
 
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.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
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.
 
Posted by lpkayak (Member # 5230) on :
 
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
 
Posted by Tracy9 (Member # 7521) on :
 
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.
 
Posted by pj1954 (Member # 11722) on :
 
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.
 
Posted by sick (Member # 9143) on :
 
If you live in Iowa you apply for Medicaid at your local human services office in the courthouse.

sick
 
Posted by Keebler (Member # 12673) on :
 
-
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 ]
 
Posted by Shosty (Member # 12232) on :
 
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.
 
Posted by sick (Member # 9143) on :
 
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
 
Posted by sick (Member # 9143) on :
 
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
 
Posted by randibear (Member # 11290) on :
 
contact those people privately and respond to their messages. they might have suggestions for you.....please.....
 
Posted by groovy2 (Member # 6304) on :
 
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-
 
Posted by MariaA (Member # 9128) on :
 
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.
 
Posted by Tracy9 (Member # 7521) on :
 
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.
 
Posted by 1WearyChick (Member # 17840) on :
 
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.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
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.
 
Posted by Melanie Reber (Member # 3707) on :
 
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.
 
Posted by sick (Member # 9143) on :
 
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
 
Posted by seekhelp (Member # 15067) on :
 
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.


 
Posted by randibear (Member # 11290) on :
 
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.
 
Posted by sick (Member # 9143) on :
 
ranibear

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

sick
 
Posted by Curiouser (Member # 14128) on :
 
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]
 
Posted by fatigued15 (Member # 6437) on :
 
Does anyone on medicaid get their IV meds covered?
 
Posted by METALLlC BLUE (Member # 6628) on :
 
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
 
Posted by Tracy9 (Member # 7521) on :
 
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.
 
Posted by Tracy9 (Member # 7521) on :
 
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.
 
Posted by LymeCFIDSMCS (Member # 13573) on :
 
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.
 
Posted by Tracy9 (Member # 7521) on :
 
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....
 
Posted by MariaA (Member # 9128) on :
 
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.
 
Posted by Lou B (Member # 64) on :
 
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 ]
 
Posted by seibertneurolyme (Member # 6416) on :
 
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
 
Posted by METALLlC BLUE (Member # 6628) on :
 
Great post Bea. I hadn't considered that.
 
Posted by efsd25 (Member # 2272) on :
 
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
 
Posted by Shosty (Member # 12232) on :
 
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.
 
Posted by HaplyCarlessdave (Member # 413) on :
 
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
 
Posted by ldsucs (Member # 16142) on :
 
Mexico...
 
Posted by MariaA (Member # 9128) on :
 
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
 
Posted by drewby (Member # 15253) on :
 
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??
 
Posted by Parisa (Member # 10526) on :
 
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.
 
Posted by catalysT (Member # 10786) on :
 
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.
 
Posted by Zelante (Member # 9355) on :
 
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.
 
Posted by bettyg (Member # 6147) on :
 
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.
 
Posted by HaplyCarlessdave (Member # 413) on :
 
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!
 
Posted by TheCrimeOfLyme (Member # 4019) on :
 
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.
 
Posted by Limping Lily (Member # 5099) on :
 
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............
 
Posted by Parisa (Member # 10526) on :
 
Limping Lily,

Maybe a women's shelter could help you?
 
Posted by troutscout (Member # 3121) on :
 
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.
 
Posted by JKL (Member # 18414) on :
 
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.
 
Posted by IMHisda (Member # 6998) on :
 
Curioser:

Just some ideas. Havn't gotten to this point yet but maybe the salt and C protocol would be the least expensive?
 
Posted by Getting Better (Member # 8919) on :
 
My opinion is to self-treat. If you don't have any other options, why not? You can get antibiotics in Mexico. If you can't do that, you can take herbs, many people do well. Samento, cumanda, teasel -- some of Buhner's protocols.
 
Posted by abbyjo (Member # 16073) on :
 
I've been able to sell my homemade items through etsy. It is a on-line business for all

things hand made to sell. If you have a talent, you should check it out. I'm able to work from

home and it has really helped us pay for treatment.
 
Posted by Curiouser (Member # 14128) on :
 
Just wanted to drop a note to let you all know how much I appreciate all your suggestions, advice, and care. And I do. [group hug]

I've been off all meds and supplements for about 2 months. I decided to let my body go back to "baseline" and see what was what.

I feel amazingly good, all things considered. Still tired, but the bone-crushing fatigue is gone. Have a few neuro things going on and those are my biggest concern right now.

But I don't feel 'sick'. Most of my physical sx went away soon after stopping the meds. No sign of relapse so far. *knock wood*

I'm not sure if all this was really a TBI or something else since I got exponentially worse while on meds and nothing got better, even after IV abx.

All my previous testing was negative, except for a barely (and I mean barely) positive IgM from Igenex. I know the testing isn't even remotely accurate, but it does make me wonder.

I have appts with 2 neuros next month to see if they can figure anything out. One of them tests for pathogens that can cause neuro sx, so maybe I'll get a confirmation of the lyme dx after all.

The feeling right now is sort of like waiting for the other shoe to drop. If it was a TBI after all, if/when will I relapse? If it wasn't, what is it?

Just thinking out loud here. I don't expect anyone to agree with what I've done/am doing and please don't slam me for it. These choices are based on what I think is right for me, based on my circumstances - the same way everyone else makes their choices.

Anyhoo, thanks again! [Smile]
 
Posted by kam (Member # 3410) on :
 
Glad to hear that not being on meds has worked out for you. I hope it continues.

I have tried several times stopping meds and have had symptoms I have forgotten about returned.

I am about to go into the no med zone possibly msyelf. So, hoping I do as well as you are doing and it continues.

It would be interesting to start up a post on those who have gone off meds and see how they have done.
 
Posted by kam (Member # 3410) on :
 
Just checking in with you to see how you are doing. Still OK while off meds??
 
Posted by eric555 (Member # 18343) on :
 
Just went to The Citizen's Briefing Book and you Can Still Vote !!!!!


I just went to do a few votes and it allowed me to do so...

http://citizensbriefingbook.change.gov/

(it only lets One Vote per person's email per Topic, but you may also register under a different email for More Votes)

(search for keyword Lyme)


Also, the Take Action on Lyme Disease Epidemic is clearly NOT over yet,


This campaign is targeting your Governor, members of your State Senate, members of your State House, the President of the United States, members of the US Senate and members of the US House of Representatives.


here is the direct link...

http://healthcare.change.org/actions/view/lyme_disease_epidemic#letter_form


and here for Free Equal Health Care For All...


http://healthcare.change.org/actions/view/free_equal_health_care_for_all


Please get Everyone involved, friends, neighbors, family, coworkers, groups, and anyone else you may think of.


Thank you.

Best regards,
Eric
 
Posted by Keebler (Member # 12673) on :
 
-

jblral just posted this link at another web:


http://www.lymedisease.org/news/touchedbylyme/index.1.html

and


http://www.lymedisease.org/news/touchedbylyme/64.html


TOUCHED BY LYME: Financial help for Lyme drugs?


-
 
Posted by D Bergy (Member # 9984) on :
 
A Rife machine is about the cheapest way to treat Lyme. For the money, it is one of the most effective treatments. The longer you use it the cheaper it is compared to other methods which get more expensive as you use up more products.

Make sure you have one long before you are out of doctors and money.

We have insurance and have not used a doctor or single pharmaceutical antibiotic and have had very good results using products such as Samento, Cumanda, MMS, and Spiro. Even so, the Rife machine has been, and still is our mainstay.

It can allow you to stay normal enough to keep a job and try other things if you choose.

Dan
 
Posted by pmerv (Member # 1504) on :
 
you do doxy if you can get by on it, it is very cheap.
 
Posted by jt345 (Member # 19638) on :
 
There is alot of good info here but,anyway You cut it. It is not cheap trying too treat an illness that is not even belived in by the mainstream medical world.

I have lost everything but,my wife and a few friends. Face up to the fact that life is not fair,dig in and try too stay alive.

Most of all try too help eachother with out being asked. Every person deservs their dignity,with out that we are all blobs of flesh.

Offer before someone asks ,spare them the embrassament,of having too crawl like a gut shot pup.

Face the fact that the mainstream medical world would just as soon see You (We just go away. The world has not changed in 2000 years Jesus said "the poor will always be with you. But he also said :What ever You have done to the least of these You have unto Me"


Keep on fighring the sestym,fight for fair treatment(good luck There). But most of all do not forget where You came from. We all will dye someday,that's a fact

I am truely sickined too see people,in such dire straigts. I have lost my train of thought, the only thing that rings in my ears ,are these words treat each other as You would want too be treated Yourselves.

I see this movement as being close too breaking throught,but if we gain medical treatment rights and leave all of our wounded and sick by the side of the road .what good is it.

I know there are wealthy people here and poor alike. Just reach out too eachother. Part with some of your fourtone ,and be willing too swallow some pride too get help. But do not .do not rely on the government too help you. It will not happen in our lifetime.

This is only what I see, my take could be completly wrong ,or I could be 100% right . It dose not matter ,what matters is that You all love each other.
be as well as You can be today
appleseed
 
Posted by bettyg (Member # 6147) on :
 
appleseed, well said my friend! xox
 
Posted by tickalert (Member # 7033) on :
 
D Bergy what is the cheapest palce to purchase Cumanda, Spiro, and MMS? What is MMS and Spiro...brand name?
 
Posted by D Bergy (Member # 9984) on :
 
I don't know where the cheapest place is to get any of these products. I bought the Cumanda from Nutramedix. The Spiro was sold to us by a homeopathic doctor. I am not sure if it is available to non healthcare people.

Miracle Mineral Supplement is what MMS stands for and what name it is sold under. The price varies, but it is pretty cheap for how long it lasts.

Dan
 
Posted by lymeHerx001 (Member # 6215) on :
 
quote:
Originally posted by troutscout:
[QB] 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. ]

Oh my God trout, I hope you have a net income of 100,000$ right?
 
Posted by Amanda (Member # 14107) on :
 
Go to Bridges to Access for free Mepron, Augmentin, Ceftin. Go through the list of their medicines. You must not have insurance, and you have to meet eligibility requirements, you can read about that on the website.

http://www.bridgestoaccess.com/about/program_description.html


The Partnership for Prescription Assistance offers a single point of access to more than 475 public and private patient assistance programs, including more than 180 programs offered by pharmaceutical companies
https://www.pparx.org/Intro.php

There is also
http://www.myfreemedicine.com/

and

www.needymeds.org
 
Posted by METALLlC BLUE (Member # 6628) on :
 
Believe it or not, this issue is actually happening to me now. My solution? Sell "big" things that I don't use, that bring big money. I can pay for my treatment, and someone else gets something nice.

I'm trying to get approval from moderators to actually make the sale here if I'm permitted.
 
Posted by Tai (Member # 10022) on :
 
After 30 yrs undiagnosed, then abx for 8 mos (40 symptoms down to 15), then Dr. Zhang's protocol (down to 4), I'm now on colloidal silver (down to 1). If I had it to do over, I'd begin with the silver. The abx affected my liver and silver has no side effects. You can get it at any health food store or online. I've read the mesosilver is the best and plan to switch to it. I also have a friend who went blind with Lyme and is now fully functioning using silver only. He also reports treating a dog near death from LD and the dog is now healthy. It's relatively cheap and definitely worth trying. I start with 4T daily until I can taste it, then drop down as symptoms fade. But search it here for how others have dosed first. At this point I only use it when symptoms flare.

Dr. Zhang's treatment also uses lots of allicin (garlic) so I agree with another poster on trying just the garlic as well. Warning: those around you may find your "perfume" objectionable.

I also use tonic water to treat my leg cramps.

Also important: Heat up your body with: exercise, hot showers, hot tub, sauna, whatever you have access to. Detox, detox, detox to help boost your body's response to fighting this d*** thing. Take probiotics as well. You also may need to supplement with vit D (get tested to see if you're low).

If you're not on abx, I believe sunshine really helps, plus it feels good on the joints. Swim in salt water. Breathe the cleanest air you can find. Avoid eating sugary foods, or those that your body turns to sugar. This will lessen a lot of the nasty things that go on in your body resulting from LD, such as yeasties, plus I think it may help starve the spirochetes?

Do continue to search this site for any of the suggestions folks have offered you, because everyone is affected differently. You may find someone with similarities to your case and learn what worked best for them. You may be pleasantly surprised at how well you do on your own. But even if you're self-treating, please still have your bloodwork done to chart your progress and nip anything in the bud that may arise. I wish you the very best. Please keep a positive attitude and share your progress.
 
Posted by bettyg (Member # 6147) on :
 
Methods of coping with Financial Burdens compiled by Melanie Reber & others

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/35162?#000000

[ 05-31-2009, 03:35 PM: Message edited by: bettyg ]
 
Posted by SeaLady (Member # 20467) on :
 
Hi, I am new on here, but was on one of the Lyme Yahoo groups for a while, I am surprised that no one on here mentioned a fairly common protocol for treating and beating lyme.....

Sea Salt and Vitamin C - in large quantities. Sea Salt is actually pretty good for us, can even lower High Blood Pressure, table salt makes you retain water, Natural Sea Salt (not available at the grocery store) let's your body use the water available to them and hydrate your cells.

So a tsp of sea salt (I have put mine in juice or in empty capsuls) and 6 - 10,000 units of Vitamin C spreadout over the day.

This is really a pretty cheap method, Redmonds Sea Salt is about $6.00 for a 2 lb bag and I buy 1000 mg pills of Vitamin C and it is maybe 20.00.

So for about 22.00 a month you can try this. From what I read the spirochettes can't live in the salty environment.

I used this method along with the adrenal protocol, something did work for a couple of months, but when i started running out of the Adrenal protocol I just stopped using most all of it.

I also found out I am full of candida so am treating for that as well.

Good luck.
 
Posted by KimDC (Member # 20699) on :
 
FREE/REDUCED-COST CARE FOR CHRONIC LYME PATIENTS

CLINIC OF ANGELS
9804 N. 56th St.
Tampa, FL 33617

(813) 980-1236

I was given a card from this clinic. It's run by an LLMD. I haven't used this clinic, so I can't tell you how good they are.

I hope this is helpful.

Kim
 
Posted by DLC4lyme (Member # 20937) on :
 
Yea me to
I have no insurance

no work compensation

after i beg for bill money

and emergancy help from all the locales

I can barly get some food for my wife and kid

I have to let meds go to do that

whe're soon to be homless

And i'm to sick to do anything about it

I just take it one day at a time

and leave the rest to God

I'v done all I can do

It breaks my heart to let my six year old

daughter down.

I'm not even able to do free stuff with her.

we'll hang one and keep praying

he has got me this far

You have my empathy

LOL
 
Posted by bettyg (Member # 6147) on :
 
finally hope,

please copy your last post at 141 am and start it in MEDICAL

subject: Can lyme disease be cured & stop taking meds?


then please tell us about how long you've had lyme and which meds you've been on for how low ... thanks


now please delete the one i noted above from this link...
click on pencil, 3rd box to right of your name
go to top left corner and click delete post ...

ignore moderator's comment. huge thanks [Wink] hugs
 
Posted by shorty31 (Member # 21903) on :
 
quote:
Originally posted by troutscout:
I figured out how to make money while sick...yet not be tied down to hours. This past twelve months I have brought in more than my wife...and I was sicker than hell the whole time.

here's the problem......whenever...I try to help peole on this website make enough to pay their bills also....(I was deathly ill guys).....the "Administrators" of this site....edit me off....

Its lularky that I am NOT allowed to share my secrets.....with those that suffer as I do.

What a shame...what a shame.

Trout [Wink]
PS...In fact with market as bad as it is....I CAN'T KEEP UP WITH DEMAND!


 
Posted by shorty31 (Member # 21903) on :
 
Troutscout
I could really use that secret but your mailbox is full.
 
Posted by Cap67 (Member # 21923) on :
 
I am new and I see you have alot of replies already, I was just wondering do you qualify for any kind of help from the state where you are??? IE: health insurance through the state?? It has saved my backside for over 4 years. However they are taking it away now and I am in the same boat as far as the doctors, paying them, paying for rx's...how in the world will we manage, we live on my husbands disability which is just over 2 grand a month. by the time we pay bills, we are lucky if we have 300 or so to live on for the whole month. I have been trying to get SSD for almost 5 years. I just understand your frustration, fear etc...Cap
 
Posted by gridmonster (Member # 19280) on :
 
This Lyme clinic is run by an established LLMD. His charity has been established to finacially aid patients in need of treatment.

He's well known.

www.ClinicOfAngels.org
 
Posted by Elaine G (Member # 20735) on :
 
(Also posted in Medical)

I found this website that helps people who cannot

pay for their meds.

Patient assistance program

There are so many programs available to help and

so many meds available. Income charts also on

website. There are a lot of programs and may

seem overwhelming to some.

Also, a site for discount meds at in your local

area is:

your RX card

They only ask for your name and email address.

RX cards give you a number and you can print the

card on your printer. You can then search for

meds at local area pharmacies and check prices.

Biggest savings is on generics on your rx card

I hope this helps someone. [Smile]

Elaine
 
Posted by lymebrained (Member # 22066) on :
 
i haven't posted on here for a very very long time!! my heart goes out to you as i will be in the same situation shortly....i too don't agree to self medicate..esp if you are like me and haved herxes that constantly wind you up in the ER...it's bad enough that even when you ARE being treated by a lyme dr, they won't speak to the ER drs because of fear of being "discovered" but if you treat yourself and have no dr at all to even mention and wind up in the ER, how scary!!!

Also...i must say I am also among those who do NOT agree to give up everything you have to treat this...I pretty much did (almost) and now I am still not well, my credit is in the toilet and now I cannot afford to do any more treatment and I have adrenal failure and not being on abx is probably going to ultimately kill me.

Before I gave up everything for treatment, on my good days (which were still few and far between) my husband and I used to go listen to music or take some day trips or just do some stuff to enjoy the few days I was feeling better. Now, we are completely broke and we have no money for stuff other than the bare necessities and since most of my friends deserted me and us, we don't have any socialization at all other than each other and it has ripped apart our marriage (we now have no fun in our lives and worry about money all day and night and don't sleep...my point...i am still very ill and even more so and now after all the money i spent and money we borrowed, lost house, and more, my quality of life is much worse because we can't even do anything remotely enjoyable and we are in a much worse situation than before.

Taking a break from meds is something we all have to do for a while...i have done it...for me...i had a steroid nightmare and now I can NEVER be off abx so i don't know how I will ever take a break off them...dr said with my dependence on steroids and now facing a life long issue of being even more immune suppressed,(long story), the risks of my not being on anything antibiotic wise is much worse than the herx I can have on them but i need the steroids to live at this point.

Lyme just plain sucks!!!!!!!!!!!

My heart goes out to you and every one of you on this board. Noone should not be able to get treatment for a serious life threatening illness due to inability to pay...this is something even my other chronically ill friends without lyme cannot understand..they say "a dr must treat you regardless...they took an oath"....they don't understand that all goes out the window with lyme, as does alot of other stuff that is afforded those with legitimized and respected chronic illness.

Gentle hugs.
 
Posted by lymebrained (Member # 22066) on :
 
also i meant to mention that people are very quick to recommend medicaid/achss and state aid (especially folks with other chronic illness) but the fact is, as someone stated, the tiny handful of lyme drs that even TAKE any insurance will not take state ins and many are also dropping medicare patients....so a government system that is set up to help the ill once again does not count for us.

Also..to qualify for those patient assist programs, you have to make VERY little and if you are married and spouse makes a good living (even though all of his salary goes to paying off medical bills), they will not take into consideration...they only take monthly income and not debt into consideration when determining eligibility for those programs...
 
Posted by Cap67 (Member # 21923) on :
 
I hear what your saying! We make just enough to disqualify us from getting any kind of help. I have managed to find someone to help with the cost of the lyrica, nexium and my antidepressant but it is still costing me money. I just picked up 3 rx's and just those 3 were over $176.00. I am on like 10-13 meds already. I just lost my state insurance and we were barely making it month to month before we had to pay for all this ourselves. The system has never seemed to work in my favor...sorry to hear your in the boat you are, it sure makes me think twice about getting tested again ( and possibly treated ). wishing you all the best...cathy
 
Posted by bettyg (Member # 6147) on :
 
NEED HELP PAYING FOR MEDICINE?

this applies to ALL medicines for whatever disease!!

i just got home from visiting with LEAVE IT TO BEAVER, LARRY MATHEWS, representing DIABETES patients, on the

PARTNERSHIP FOR PRESCRIPTION ASSISTANCE bus traveling nationally all over here in town today for 2 hrs. only, 10-12-09!!

they gave me the following info and i'm just going to type it up so it goes here and other places:

SERVICE TO AMERICA

since the alunch of PPA in april 05, more than 5.7 million americans have found programs that can help them pay for their medicines. thousands more find help every single day.

if you do NOT have prescription coverage and can NOT afford your medicines, call


1.888.4ppa-now or 1.888.477.2669 or visit

www.pparx.org

more than 2400 brand-name and generic medicines are covered. you could get them FREE OR NOREARLY FREE!


EXPRESS SERVICE

here's how you find out if you qualify:

1. know the NAMES and dosages of the medicines you take.

2. call toll free 1.888.477.2669

3. a trained specialst will answer your questions and help you apply.


fyi: there are 10 questions asked. i'm copying this OTHER info since it is apparently DIFFERENT FOR ALL 50 STATES!!


Medicaid/Children's Health Insurance Program (CHIP)


There are currently millions of uninsured and financially-struggling patients in America eligible for help through Medicaid and the Children's Health Insurance Program (CHIP) who have not yet enrolled.


Significant health care gaps exist in the U.S. today because low-income patients do not have access to the healthcare coverage they need to better fight disease.


The Partnership for Prescription Assistance is raising awareness of these programs to help ensure that patients get access to the coverage they need to live longer, healthier and more productive lives.

Pick Your State
Get an Application
ApplyInstructions

To find out if you qualify for help, select the state on the map where you live.

The state programs will be shown with a short summary below the map.

To find out more details about that program click on the program name.

The program details will open a new window where you can see the program information including how to apply for the program.

In most states, you can complete a short application and send it through the mail. Applications should NOT be sent to PPA.
***************************************

plus this info from

ADW AMERICAN DIABETES WHOLESALE
************************************

1.877.241.9002

http://www.americandiabeteswholesale.com/-strse-template/contact/Page.bok

so check this out too! hugs/kisses

hope many of you will find success in your meds for LYME/CO-INFECTIONS!
***************************************** [Smile]
 
Posted by catnippy (Member # 18641) on :
 
OK guys don't get mad at this idea!!!


But pretend to rob a bank or something maybe less dangerous to others. Prisoners get great medical benefits from what I have heard.


Make sure it is a large felony because i have also heard they let lesser offenses out to save medical bills.


I saw a show where this man accidentally got put in jail for using too much pain meds and was accused of distributing.


Then he FINALLY, thanks to the state prison system, got a morphine pump, which is what he needed but could not afford.


This was a documentary.


Sorry again to all I offend with this suggestion!
 
Posted by WildCondor (Member # 434) on :
 
Free Prescription drug help for NY State

This info might help some of you get your meds easier.
Other states check into programs like this.

..............
NY State residents:

apply online:
http://nyprescriptionsaver.fhsc.com

Free Pharmacy discount card that can lower the amount of fees by 60 percent on generics and 30 percent on name brands

Who can Join:
NY State residents who are NOT receiving medicaid AND are:

Disabled OR

anyone with an income under $35,000 if single, and $50,000 if married

anyone over 50
...................

Hope that helps!!!
 
Posted by MariaA (Member # 9128) on :
 
I just called the Rocephin manufacturer, Roche/Genentech- there is no longer a prescription assistance program for Rocephin.

However, some other IV drugs are made by manufacturers with various kinds of prescription assistance programs. The manufacturer of IV Azithromycin has a discount card that they give to qualifying individuals (up to 400% of federal poverty level), and I'm still trying to find out if that's actually cheaper than shopping around.

PPARX has good info on their website, lots of folks talked about it in the thread above.
 
Posted by MariaA (Member # 9128) on :
 
I did some research on fundraising for expenses, and while I didn't find exactly what I was looking for, I did find this website of a Lyme patient's family, in which the man's wife wrote about how she negotiated his bills with the hospital afterwards:
ideas for how to fundraise privately for bills- donations via Paypal from friends, or asking friends to donate items to be auctioned via eBay:
http://www.friendsofjosephmoore.com/2009_08_01_archive.html
Ways they dealt with the hospital bills afterwards, with some really creative ideas on how to find out what hospitals might be willing to accept in lieu of 'full' payment:
http://www.friendsofjosephmoore.com/2009_12_01_archive.html
 
Posted by kam (Member # 3410) on :
 
I was told by my lyme doc that I would need to cancel medicaid in order to get the meds from med programs.

So, limping along right now with the biaxin that the primary doc is providing via medicaid.

thankful for that.

Trying to consider other alternatives but have yet to come up with something do able at this time.
 
Posted by lemonlime (Member # 25975) on :
 
Why it's hard to get rid of lyme and co bacterias?
Biofilm- yep because these critters hide and protect themselves in it. It's like fibrin.

Boosting the immune system is vital forever.

Lyme and co infections and typically virus's are all involved. And all must be dealt with. Even parasites since they carry some of these critters too.

MY understanding of what may have to be done if lyme and co bacterias, are found ? Simplified:
Biofilm which protects these critters has to be broken down, Detoxing of neurotoxin and Heavy metals. Of course boosting the immune system, and antibiotics.

Also google pharmacy discount groups- there are many groups offering free discounts cards which bring down over the counter meds some up to 70%.
Apply for all of them one might help more than another depending on the meds. You call and compare -tell the pharmacy which cards you have and they will compare all of them for the best price. I hope this helps.
 
Posted by kellephant (Member # 24885) on :
 
just the thread i need! i am in the same boat as you...
 
Posted by kellephant (Member # 24885) on :
 
shosty,

what about those of us who have insurace, but bad insurance? i have beech street insurance through my husbands work... but it hardly covers anything! we had to drive over an hour just to see a regular doctor that beech street covers, he wasn't even a specialist, and even with my insurance, i paid $100 out of pocket. he wasn't even a good doctor, so i just have to keep looking. going from doctor to doctor with lousy insurance really adds up! and i'm pretty sure i can't qualify for better insurance considering i already have some.
 
Posted by kellephant (Member # 24885) on :
 
also, i think a lot of our spouses make just enough to disqualify us from help from the government. if i wasn't so sick my husband would make enough for us to get by... but that's simply not the case because of my medical needs.

i've been sick since i was 15. my husband and i are in our early twenties so we don't have any savings to fall back on. i've been sick the entire time i've known him.

we have nothing valuable to sell... we don't even own a table. we JUST bought a bed after being married for almost 5 years... we get by on the bare minimum already, so it feels pretty hopeless.

the only family members who can afford to help us financially are the ones who don't even believe i'm sick.

*sigh*
 
Posted by littlebit27 (Member # 24477) on :
 
Qualifying for help in some states is just ridiculous. Some don't take into account your bills just the income. No one takes into account that my mortgage payment is $1000/month in a town where the normal mortgage is $700. My ex husband defulted on the loan and I'm left to clean up the mess. I own the house now though, he's off the deed thank god.
 
Posted by Remember to Smile (Member # 25481) on :
 
There are SO many positive ideas presented here! We need to stay open-minded, optimistic, and keep lookin' for the end of the rainbow.

I found a shiny penny on the sidewalk as I crept up to the front door for my very first appt with a LLMD. I picked it up and gratefully pocketed this cheery sign (heads up!) that the Universe provides as I keep making the effort to survive, thrive, and help others as I am able.

Blessings all!
Smile [spinning smile]
 
Posted by Searching_To_Rescue (Member # 28988) on :
 
I read through every response on this thread and I'm purely just in awe of how bad things are or can be.

I'm trying to figure out what I'm going to do because if you can say "flat broke" thats what I am, I'm really young, have absolutely no money, no family, and that old stand in "you'll find out who your friends are" has really came in handy. In a day or two I'll be getting discharged from the rehab hospital I'm currently in, and I have no place to go, and will literally be on the street.

the worst part is that I'm in a wheelchair and can't walk at all, I don't know how I'll get around or anything like that, and I'm in massachusetts where its 30 degrees or so right now, and very few homeless shelters. I'm a fan of social services, But I just Dunno what to do right now.
 
Posted by lou (Member # 81) on :
 
Searching....can you contact social services at the rehab hospital, or with the county to see what help you might get for housing, food. Welfare? Surely the rehab hospital won't just dump you out on the street in a wheelchair.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
Searching, what part of Massachusetts are you in? Here in Massachusetts you have a long list of things to help you:

Read through this: http://www.socialsecurity.gov/pgm/links_disability.htm

Then: http://www.socialsecurity.gov/pubs/11130.html

And finally this will help you get specific in your needs, ranging from finding a home, legal advice, food stamps, fuel assistance, Personal Care Assistant programs thru STAVROS, etc.

http://www.mass.gov/?pageID=eohhs2constituent&L=2&L0=Home&L1=Consumer&sid=Eeohhs2
 
Posted by METALLlC BLUE (Member # 6628) on :
 
Each state has a .gov website, such as mass.gov, ct.gov, nyse.gov, etc

Go to the governmental website, and look through the sections on health, medical, housing, disability, food, assistance programs.

Every state provides. If you have questions, call them up and tell them your story briefly. i.e. "On husbands insurance, but have a chronic illness and finances are strained too far, need some help finding something we're eligible for, any ideas?"

You get the point. It's what you say that opens doors. So just keep it simple.
 
Posted by glm1111 (Member # 16556) on :
 
UP
 
Posted by kam (Member # 3410) on :
 
Search to Rescue...not sure how it is in Mass. But, I went from $50,000 a year income and money in the savings to no income and quickly draining the savings.

Through word of mouth, I learned about low income housing or apartments.

I was told which ones they were. Went there and filled out applications for each apartment and got on a waiting list.

But, I did hear from one lady in CA who contacted housing and got into a place right away because she was much like you are...in the hospital with no place to go.

She even got help with furnishings...but not sure how that worked.

As far as transportation...try to find a place that has public transportation.

Here it is the senior center.....they include those with disabilities ...no age requirement there. they have a lift for wheel chairs.

Each area is different.

It is tricky trying to find out what the services are and who to contact.

Most of the info I had was through word of mouth. Hopefully, the hospital will have someone there who can help you get connected.

it is scary. But, hang in there and keep knocking on doors.

I'd start with a search for low income housing in Mass and see what you come up with.
 
Posted by kam (Member # 3410) on :
 
PS I keep getting this idea in my head to start a place for people to come to while they heal from lyme.

There is an abandoned boys ranch 3 miles outside of town that I use to think would be a great place.

It is slowly being destroyed by vandals (sp?)

NO ticks in this area yet either [Smile]
 


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