posted
I think that one of the one of the most SAD
parts of this nightmare is for poor people that
cannot afford these EXTREMELY expensive LLMDs.
They are left behind.
-------------------- Contracted LD et al, August 2000 Officially dx, February 2006 My Lyme Neuroborreliosis mimics Multiple Sclerosis. Lesions- Brain, Cervical and Thoracic spine. Posts: 123 | From Seattle, WA | Registered: Oct 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
After I couldn't afford my LLMD anymore I treated myself with inexpensive antiparasitic herbs and salt/c and am almost in remission. Poor people can get well if they do the research.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
I have a decent job and good health insurance, and I still can barely afford my LLMD and treatment, WITH help. It is already threatening to make me homeless and have to move in with family. The travel especially costs a lot.
I don't know what I will do if my treatment goes on too long or gets more expensive than it is. The month I used herbs, before I got in to see my LLMD, those were very expensive too. None of this was ever in my budget.
I can't imagine how a poor person could cope with it at all.
On the other hand, it is true there are a lot of things you can do that are some help and not extremely expensive, and poor people may quality for some kinds of assistance. That's not a reason to give up trying to get well.
I do think it is difficult to do it without competent medical advice from an LLMD, but the truth is, the way to cure this thing is not definitely known by anybody.
There is no absolute certainty that if you had a ton of money, and spent 24 hrs. a day doing everything you could to get cured, that it would work.
There are several avenues to getting well, and more than one may work for some people, but none of them work equally well for everybody.
Knowledge is very important, whether you have an LLMD or not, and you can get helpful books for free from your public library, such as The Lyme Disease Solution by Kenneth Singleton and Healing Lyme by Stephen Buhner, that tell you things to try on your own.
If your library doesn't have them, they can buy them or get them for you through interlibrary loan.
You can order bulk herbs in powder form and make your own capsules, to make the herbs cheaper to use. Some herbs have antibiotic properties, and less side effects than drugs.
If you can't afford a sauna for detox, you can sit in a car in the sun and sweat, in warm enough weather (making sure to drink water while you do it). Epsom salt for detox baths and lemons for lemon water are fairly inexpensive.
Exercise is free. Sleep costs time, but not money. A good diet of real food that you cook yourself may or may not cost more than what you already eat (unless you're already eating well). You are better off to get vitamins from food and sun exposure than vitamin pills.
It might be possible to go to an LLMD for a diagnosis and treatment plan, and then have a Lyme-friendly local doctor do prescriptions and blood tests so you wouldn't have to make numerous trips to the LLMD.
That said, I think it is tragic that anyone has the possibility to go bankrupt or become homeless due to medical expenses, or to get sicker from a treatable illness because they cannot afford treatment.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
A lot of treatments are available for patients that can't afford chronic long term care. I'll leave it to others to list them. I'm too tired.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
It's very unfortunate. My husband has a good job and good insurance. My whole family of 5 has Lyme and coinfections..all late stage neuro.
We are fortunate, however, that our LLMD takes insurance,is treating us for a LOT cheaper then normal (seeing as our whole family has it and he feels awful for us) and he does not charge us for what insurance refuses to pay.. a blessing to be sure.
But most LLMD's wont/can't do that. And even with all the help our LLMD has done for us.. we barely make it.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I've never been able to afford more than a couple consults with a couple different LLMDs over the years.
I can still study. I can still do a lot for myself. I appreciate the courage of many LLMD authors who graciously and generously share their work so that I can do the best for myself with self-care. I'm also lucky to have a lyme-friendly GP but I sure do wish he knew more in this area but I know it's not fair to expect him to magically pull up skill in a sub-specialty.
We still try to do the best we can with what we have.
Sure, it may be much harder and - indeed, the system is broken - however, there are still many proactive steps that can be taken on any budget. Knowledge is still power and there are many still many avenues one might explore.
=========================
Suggestions for When You Need Treatment and Funds Are Low
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
oh, just think when the only option is the Infectious Disease Society's guidelines become the only allowable treatment like they're gunning for.
Then poor or not we won't get treatment.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
I absolutely commiserate with you neuro. I have supported universal health care in the US for a while. How exactly we do it is up for debate, but I do not understand how anyone can argue against universal health care. Health care is an inalienable right for every person.
There is no way that the US will be able to emulate Canada, where the govt pays for all health care, or the UK, where the govt pays for and also runs all hospitals. Countries like Germany, however, have somewhat similar systems. In Germany there are still health insurance companies, but all of the basic ones are required to be non-profit. That way there is not a conflict of interest between treating the patient and watching the bottom line.
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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posted
It is rotten. I think about it often. Also about the people who are alone and really need help. For those who have some little bit of money it's a race to get well before the money runs out. For the wealthy, they can pay but they're still sick.
I often dream of an old fashioned sanitorium (like in Thomas Mann's The Magic Mountain)--but with a sliding pay scale--where people could get comprehensive treatment under the close observation of a team of LL docs, psychs, nutritionists, physical therapists etc. It'd take a Warren Buffet type to fund it. I guess I won't hold my breath.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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quote:Originally posted by Ian: I absolutely commiserate with you neuro. I have supported universal health care in the US for a while. How exactly we do it is up for debate, but I do not understand how anyone can argue against universal health care. Health care is an inalienable right for every person.
Ian, you don't understand. The universal health-care will only cover standard approved treatments. It will not cover the long-term antibiotics that LLMDs prescribe.
In the end, it will make it harder for us to get treated for Lyme.
Posts: 330 | From Colorado, USA | Registered: Nov 2008
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Yes, there is no question that Lyme is an expensive disease. With each statement that my insurance sends I have a sigh of relief that they covered something that I thought they would not cover. I am incredibly grateful for the benefits that I have received.
I agree with Keebler that an important aspect of this illness is keeping yourself educated. It's difficult for me because my brain does not process information easily but I do the best I can. I also have a file of protocols of people that I have met that have been "cured". I am starting to develop my own protocol based on Dr. Bs guidelines and other variables. I also believe in prayer and I do a lot of that.
I know people that have been to the best LLMDs in the world and are still struggling to get well.
Lyme is like a puzzle that everyone is trying to figure out.
I believe that there are ways that the poor can get help. I won't turn this into a political debate and give my opinion about universal healthcare but I'm praying for everyone that is struggling with this disease, rich and poor.
I also plan on starting a business. All profits will go to support the cause of fighting Lyme.
Posts: 2232 | From USA | Registered: Aug 2009
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quote:Originally posted by dmc: oh, just think when the only option is the Infectious Disease Society's guidelines become the only allowable treatment like they're gunning for.
Then poor or not we won't get treatment.
Guess which guidelines they'll adopt if we get national health care?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
One of the better known LLMDs recently published his approach to lyme, and he makes the remark that lyme is unfortunately a disease for the wealthy.
I need IV, and just can't seem to pull the money together....I live on my own, no house to morgage, no spouse, and am really scared because my savings is almost gone, and I just started SSDI process last November...
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Amanda, which LLMD stated this?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
So are there any efforts to get some funding through a 501(c)3 organization that people in need could apply to for some financial help?
I know of one organization set up already for such purposes, with no funds currently in it, and another person thinking of setting up a 501(c)3.
Anybody got any ideas? Anybody want to work on getting some funding going?
Posts: 13171 | From San Francisco | Registered: May 2006
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I would learn energetic tests. It saves loads of money as you stop using most of things that don't test and only use on the amount the tests say (so no overconsumption).
For me, it saved not only money, but specially time. While it would take me a couple of weeks to know if a supplement is working or not, with energetic tests it takes few seconds. I can search for what causes interaction with what, if the remedy reaches the organ in trouble, if not, what point to tap to make the remedy reach it, which organ needs more support at first, etc.
It was possible to create whole protocols for each of the singled out infection that was troubling me (infections that I also tested energetically). I rarely used drugs, and going on bulk herbs and doing own tinctures make things very possible.
It sounds like a disease for the wealthy, but not all wealthy people find the right treatment either.
As for universal care, it is a right for a human being, the US is the only developed country that still treats its people's health as a luxury item (only the ones that have money are 'allowed' to have health care).
The picture sounds bizarre when seen from other parts of the developed world. The people that will lose are medical doctors and hospitals, as their gains will be flattened.
As for IDSA treatments given to lyme, the problem is totally different from having or not universal medical care.
Europe follows IDSA guidelines for lyme, but my lyme treatment in Switzerland was fully covered (at least, medical expenses). My treatment lasted 2^3 years and during all that time, it was covered.
Remedies (homeopathic) and herbs, chiropratic work, acupuncture, etc, came from my pocket though, but the most expensive (medical expenses) were covered. The times I needed iron injections, antibiotics, and certain supplements, it was covered.
So it's not true that universal health care won't cover medical expenses for lyme. At least, not in my case.
Selma
Posts: 6200 | From Brussels | Registered: Oct 2007
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
Seekhelp asked, which LLMD said lyme is unfortunately a disease for the wealthy. Dr. H, out on West Coast. Its in the new lyme book, can't remeber exact name, it has 10 or so different medical pracitioners in it.
He also said this aspect of the disease caused him a lot of consternation, and that the wealthier patients are paving the way for everyone else, since they have the money to try various abx and alternative treatments until they find what works.
I have to say, I spent SO MUCH money on alternative treatments, including various "energy testing". And none of it helped me. The problem I see with alternative treatments is that there is even less assurances that they will help than standard abx, and yet by the time you pay for the practiioner and treatments, it can cost a lot of money.
I sure wish I had the $15,000+ I spent on alternative treatments back now to pay for IV...
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
I hear you ninjaphire. Universal health care would make it harder to get treated for Lyme, because the guidelines for Lyme are so bad. What that means, though, is that we need to get the guidelines changed. Universal health care is still a necessary thing. It is the necessary result of the recognition of health care as an inalienable right.
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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posted
I want to put in a plug for alternative care - sometimes the supplements really can help, esp4ecially the anti-inflammatories, and some are not that expensive.
Posts: 13171 | From San Francisco | Registered: May 2006
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
There's no such thing as chronic lyme disease according to our IDSA friends.
So how in the world are we going to get tx via universal healthcare for something that doesn't exist?
Chronic lyme disease is expensive; that's why the gov't will not recognize it.
Tutu is right about whose guidelines they will adopt.
Posts: 2607 | From Hooterville | Registered: Apr 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Thats right.....the gov is not going to treat an illness that they say does not exist.
As far as the poor. Any of us can become "the poor" at any given time. Nothing is guaranteed in this life.
So if you are fortunate enough to be able to see a LLMD and pay for treatment or have insurance, consider yourself very blessed.
Oh and Robin, the gov is trying to take away those supplements right now. They are in the process of trying to have them be FDA approved and become prescriptions. Its all about money and greed!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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