Financial Assistance for Lyme Disease

Financial Assistance for Lyme Disease

Don’t wait until its too late.  You WILL regret it when you lose your home AND your treatment options due to lack of options.

I had top notch health insurance, great life insurance a beautiful farm with 65 acres…I could go on and on of the financial assets my husband and I enjoyed prior to Lyme.

Its all gone now, but the pride had to go first.  Once we began to ask for help was the turning point in our financial decline, although even now I have to go weeks without certain supplements that are very important to my recovery…

Yes, it was humiliating to go through bankruptcy, and I NEVER thought I would be receiving checks from the government to pay for groceries and utilities.  But when I think of how few Lyme sufferers actually get Social Security Disability I feel like one of the lucky ones.

I have participated in, and heard of many other programs designed to help people receive financial help with the complex and severe financial realities that come along with the other horrors of this disease.  Today, I received a link from fellow Lymie (also in Maine) Dolores Claesson about http://lyme.kaiserpapers.org/financial-assistance.html, written by Vickie Travis, the eldest daughter of Mr. Adam Arnold.  In Ms. Travis’ words:

In September of the year 2000 my father, Adam Wesley Arnold was euthanized by Kaiser Permanente staff in Los Angeles, California. 

My family and I witnessed the cruel acts that were committed against our father  in the name of saving a corporate buck so 
administration would have a few more pennies in their coffers.

We were devastated by the Kaiser attitude which was basically “Tough Toadies People”.  I began studying the workings of  Kaiser Permanente and discovered a group of wonderful, supportive professionals on a list serve operated through –

HARP – The Health Administration Responsibility Project,which is hosted by Dr. Harvey Frey, who is a physician, and an attorney.  The function of HARP is self explanatory.

During this same time period I met Mr. Ronald Panzer, LPN, President of  Hospice Patients Alliance.   HPA promotes quality end  of life care and has taken a stand against imposed killings in the medical setting.  HPA provided to me  information regarding the  financial incentives of HMOs in general, Kaiser among them.

Both groups were extremely supportive of me and both groups shared enormous amounts of information regarding the financial  incentives of Kaiser Permanente to deny care, avoid diagnosis and outright eliminate the patient in any way possible if they are  going to be expensive to treat medically.

Dr. Charles Phillips, a former Kaiser Physician and who I believe is the foremost authority in this country on the inner, convoluted  workings of Kaiser Permanente steered me in the right direction.  He trained me to focus my anger and use it constructively and  believe me after what I have seen and learned about Kaiser I have more than enough anger.

It was suggested by a Florida physician, that since I was receiving numerous letters of support from members of the public, who  also were sharing their stories with me that I organize the data that I had already acquired.  That way we would be providing  documentation of what is taking place in the Kaiser Permanente environment.

Thus the Kaiser Papers were born from the most painful, eye opening experience I have ever had.

 

Thankfully the Kaiser Papers have grown into a significant people’s watchdog group with many member joining together to help – not only each other, and not just the community at large, but truly the entire country will benefit from the dedication of these volunteers who are committed to making a positive difference in the lives of suffering people.

Clearly they know the issues.

If you have any stories specifically related to Kaiser and Lyme disease, please contact Miguel below.

Miguel Perez-Lizano

Miguel Perez-Lizano at
http://lyme.kaiserpapers.org
To Contact
miguel at kaiserpapers.org

For more Lyme-specific information at the Kaiser Papers go to http://lyme.kaiserpapers.org/

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9 Responses to Financial Assistance for Lyme Disease

  1. Clara Chauteco says:

    I’ve been stuck with Kaiser for as long as I have been sick with Lyme! Many time, due to misdiagnosis, I as well as my kids and been forced to seek medical care in Tijuana, Mexico! There have been many times that I thought there only goal was to kill rather than heal me! Especially when they have intentionally overdosed me on pain drugs, and falsified medical records! Multiple times, I have been called an attention seeker and hypochondriac. More than a dozen Kaiser physicians have told me the cure for my ill health is to “stop eating and join a gym!” Lately, as my condition has been worsening, I feel that there is nothing left for me to do but give up!

    • Jenna Smith says:

      Don’t Give up! I have felt that way many times, and empathize with the deep despair that comes with continual pain and suffering. There seems to be no end in sight, but you must believe there is hope! Take courage Clara, people do recover, albeit very slowly when you are chronic…Please read Eva Sapi, PhD from University of New Haven about why Lyme becomes chronic and how to get rid of it (at a reasonable cost) http://www.townsendletter.com/July2010/sapi0710.html and her latest research that further supports the article on Townsend at It sounds like Kaiser may not be the best place for you to be treated…are there any Lyme literate physicians in your area?

      I wish you health and happiness,

      Jenna

      • Clara Chauteco says:

        Yes. There are a few LLMD’s in my area. But they are incredibly expensive. I have been treating myself lately based upon my research of treatments. It’s exhausting. Depressing. And beyond frustrating. There are times when it feels grim and hopeless. But I know that it’s not! That is when I pray harder, and fight harder! God bless you as you fight this monster too! Your blog is a blessing and very helpful! Thank you!

  2. Harold Taylor says:

    I have been treating Lyme now for 22 agonizing months. Apparently, I have had it for over 15 yrs and didn’t know it. I’ve lost 60 lbs, my three chihauha’s, my 401k, my 125k a yr job and soon my apt as I got the court summons today 1/25/14. I am seeking financial assistance but don’t know where to go. I have applied for disability but that will take months.
    Is there anywhere I can turn? The power is scheduled to turned off in two weeks. Surely, they won’t do that in the dead of winter, will they?
    Any advise?
    Thanks
    HTaylor

    • Jenna Smith says:

      Harold –
      I am so sorry for your crisis! I have been there and gone through what you are experiencing…it is so hard to ask for help when you are used to doing everything on your own! There are only gov’t agencies and churches (as far as I know) who will help with specific situations like that. I know of several people (myself included) who want to set up a foundation to collect donations to help people like you. Hopefully it will happen soon. Meanwhile CALL your US Senator’s local offices and ask for their help facilitating your application. That is how I got mine moved up the pile. The other important aspect (if they reject your request) is to apply using one of your main symptoms instead of Lyme disease: neurological fog, depression – you are more likely to get disability for those than LD – sad, but true.

      Meanwhile, ask local charitable organizations for immediate help so your power isn’t turned off.

      Blessings,
      Jenna

  3. Please help me. Had Lyme 16&1/2 yrs B4 diagnosis. Was MIS diag with everything else though. ie RA got MTX 4 that & had a brain bleed & told I did not have RA. I am SO tired & hurt all over. The surface of my eyes look like the moon. No one believes me. Please God send someone my way. Julie

    • Jenna Seaver says:

      I am so sorry for your suffering Julie – if you tell me where you are located I may have the name of an LLMD in your area…you can apply for social security disability to help you with expenses (try applying through your US Senator’s office to get your case prioritized.) Some day we will have charitable organizations for people in this country with Lyme but for now we have to beg from family, friends and local churches… If you put a story together about how much money you need and what your circumstances are along with a picture I will send a broadcast to my readers to see if anyone can help…

      Blessings Julie, I hope you feel better soon!

  4. Julie Goos says:

    Thanks for your postings and encouragement! I was taking a few minutes to search for financial resources for a friend of mine who is having a hard time treating Lyme because of her finances. I came across an organization called AMRIT Foundation. I think it stands for Alternative Medical Resources and Integrative Therapies. The website didn’t pull up easily, but I have an address and phone number. 815 Fourth St., Miami Beach, FL 33139. Phone #305-672-6734. I will give them a call, but wondering if you have ever heard of them. It would be wonderful if people with Lyme and financial hardship could get some help from organizations that are already established. That is, until we establish our own. Thanks!

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