Topic: Help for patient Elizabeth- please share this information
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
A request came through tonight to help Elizabeth, a patient who is very ill and struggling.
Specifically... they are asking if anyone can assist with the following requests. Elizabeth will be in Reno, Nevada... which is where she will require this help.
Quote"-
"She will need someone to get groceries for her, to clean, to help walk her dog, to get her to and from the clinic, and to set up her protocol every day for her and make some broths and stuff that she will need to eat every day."
If you can help or know someone who can, please write to the following address. Please feel free to share this note with folks on your email list and with other groups.
posted
Elizabeth is NOT in Reno yet. She is in Florida and is in dire need of a place to stay the end of this month. She will be homeless.
The person that has been helping her pay her rent and other bills is not able to help her any longer.
She has to be out of her apt. the END of this month and she is in Florida at this time. She is still trying to get to Reno to get the treatment she so despertly needs.
IF ANYONE has a place in Florida that she can stay PLEASE email the address above. Please someone this woman is in dire need of a roof over her head until she can get what she needs to get to Reno.
HUGS,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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posted
There is a Ronald McDonald House in Reno. Don't know if they help adults or not, but it might be worth checking out.
Also there is a very good lyme specialist ND in Reno who might have contact who can help.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
This is wonderful. You people will be blessed.
I want you to know I was banned on Healthboards Someone wanted a Dr. In a certain area they gave the city who treated lyme I responded that I know a man who was treated in
######## I am being cautious, I gave the city, and gave them my email to contact me
and I would give them his name and number as well
as the man who was treated by him.
And they banned me.
I responded twice that I did not believe I had
done anything wrong my profile contained my
email and was sorry they would not help someone
who needed it. I thought that was why they were there. My mistake.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
4Seasons said:
quote: There is a Ronald McDonald House in Reno. Don't know if they help adults or not, but it might be worth checking out.
Please read carefully ICEiam's first post. It says:
quote: Elizabeth is NOT in Reno yet. She is in Florida and is in dire need of a place to stay the end of this month. She will be homeless.
Also continues:
quote: IF ANYONE has a place in Florida that she can stay PLEASE email the address above. Please someone this woman is in dire need of a roof over her head until she can get what she needs to get to Reno.
She needs a place in Florida, not help in Reno at this time. ICEiam is in close contact with Elizabeth, so she is aware of what is really going on.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
This poor woman! What a mess. I thought the need was to get her to Reno where she has a doctor who can help her?
Doesn't she have any family who can help her?
I saw this post in General a few weeks ago from BJK. I thought he said they were trying to raise money to get her to Reno and to pay for her treatment? No?
Anybody know what the immediate need is? Florida, Reno, funds for treatment, ?
BJK, are you out there? Can you clear this up?
eagle Posts: 21 | From USA | Registered: Oct 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Is there any word on how much has been raised? I hate to be negative, but I can't get past how disturbing I find it that all the money raised so far has gone to lawyers.
Again, I apologize, but it has deterred me from donating. $5,000 was raised and every penny went to the attorneys to set up a "trust" to handle the money.
I'm sorry, but that seems outrageous to me. If I had donated part of that money I'd be livid.
Why can't the attorneys donate part of their time, or all of their time? Why does it cost so much to set up a trust fund? And why didn't they take care of Elizabeth's dire needs first before lining their own pockets?
I've been biting my tongue on this, but I can't sit back and watch this plea for emergency help knowing where all the money has gone so far.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Next, so everyone understands: There has to legally be a Trust in place in order to ask for donations of this nature. (Florida law and according to the law in other states).
This ensures that the funds are protected and also ensures that the funds go towards Elizabeth's treatment, living expenses, and other related needs.
The money being donated is going to help Elizabeth's needs to be met. There are complex laws regarding soliciting individual donations, thus the Trust protects Elizabeth, the funds, and the intentions of those that donate.
So while some may not understand fully why the Trust is needed, it is not only required by law, but is a positive aspect of the effort to help Elizabeth.
There seems to be some confusion as to what those specific needs are.
There are also comments about hesitation in donating. I am trying to address those concerns here and give accurate information so there is not confusion on either issue.
Some of what I'm sharing here will be me communicating for Elizabeth as she is not well enough to be on this forum and field all of the questions and concerns herself,
she needs to conserve her energy to fight to just stay alive. In all of this, I do have one comment that's all my own:
that is- anyone could find a reason, excuse, or even have a legitimate concern that may prevent them from donating:
I understand this, however, this is why the email address is made available to answer these questions, and I feel that's the forum for doing such, not here.
Questions of this nature need to be addressed to [email protected] as indicated on the website.
This is also where the questions as to specific needs, how much has been donated, etc should be addressed, this will avoid the confusion and also,
there is very personal information that some are posting here, that is not accurate.
There is other personal information that has been shared here that Elizabeth didn't ask to be posted here, and would prefer such not be done without her knowledge or consent. I hope we can all understand this.
(I am in direct contact with Elizabeth and can provide accurate information, however, third and fourth hand information is rarely accurate)....and inaccurate information is being posted here and causing confusion. Please, use the email on the site.
Please keep in mind that Elizabeth is alone the majority of the time, and she is dying of the same diseases we are all battling in our own way. The stress of this confusion is only going to hurt the very person we are asking to help.
Lets keep the focus on helping her in whatever way we can and not dwell on the confusion or misunderstandings.
Thanks everyone that has helped in some way and has been diligently trying to figure out other ways they can help. I encourage those with ideas to contact the email on the website.
Oh..one last thing, we are working on getting paypal/online donations set up on the website as soon as we possibly can. This is not a simple undertaking and has to be done correctly. Please be patient.
Thanks all
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
BJK,
I apologize for posting this information without your permission, but I find it odd you call it a misunderstanding since it came directly from you to me.
I care deeply about Elizabeth, as I do every one of my ill friends. I have just been extremely bothered ever since you shared with me that all money raised so far had gone directly to attorney's fees.
I completely understand the need for a trust. I just don't understand the huge amount of money that went to pay for it, and why the attorney's couldn't have waited to be fully paid if Elizabeth is in such dire straits. It just doesn't make sense.
I value your friendship and am sorry to have betrayed your trust here. I am just really bothered by all the mystery and inconsistencies here, and haven't gotten any answers when addressing them directly.
I am not suggesting anyone withold donations. I just think if you are going to publicly ask for help, you need to be prepared to publicly share the information.
Again, so sorry if I offended anyone. I know Elizabeth and she is more than welcome to come and stay with us, but we are in Connecticut.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
One more thing, it is incredbily easy to set up a Paypal account. With all the fees paid to attorneys to set up this trust, how can it be difficult to post a link and set up a Paypal account? All they have to do is link it to her bank account; it literally takes under ten minutes.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I have no idea where the information that Tracy posted came from. I haven't heard any of this information from Elizabeth.
Elizabeth is now in Florida, and she will not have a place to live after the end of this month. She does need to get to Reno for Treatment.
Going to Reno would be an ideal situation for her at the end of this month, but getting her there would be harder than finding her a place to stay in Florida until all the arrangements are made and money donated for her treatment and move in Reno.
If anyone can think of a better plan please chime in here. I was only thinking of a place for her to go to at the end of January when she has to be out of where she is living at this time in FLORIDA.
I would love to be able to help her but Las Vegas is an 8 or 9 hour drive south of Reno. Your heart was in the right place Betty.
As is mine. I would take her in, in a minute. She is one of the kindest, sweet people you would ever want to meet. She deserves a chance at life.
I fear for her life daily and pray several times a day that she will live long enough to get the treatment she so despertly needs. She is very fragile and her body can't take the "normal" treatatment that everyone else gets.
She has to be built up first in order to be able to withstand treatment to kill the disease. We all know how the medical community treats those when lyme disease is a diagnosis.
Also how many of you have been misdiagnosed for years and years and have only gotten worse? Elizabeth is one of those that didn't get to the right LLMD before it was just too late to treat her.
She is just to fragile to treat before building up her system so it can withstand the treatment. It would kill her.
If you have any questions please direct them to myself or BJK so you get the correct informaion.
Thank you,
Hugs and wellness to you all.
ICEY
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
My mother found herself setting up several trust funds when she was in her 80's. I was her transportation and the trustee for all of them, still am.
Yes, they are expensive to set up, but they have been invaluable in what they have provided to those for whom they were set up.
In an ideal world we would be able to just have the money go where we want it to go, but unfortunately this is the best way to ensure that the money that is raised goes to help Elizabeth in the way intended.
I hope we can let go of the fact that money was needed in order to set up the fund and move toward helping Elizabeth in the way she deserves.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I didn't mean to start any trouble....if $5,000 is the going rate for setting up a trust fund, then that's how it is! It just seemed like a lot to me....but I guess I was wrong!
I have written to Elizabeth and offered for her to stay with us, and seek treatment at the Marino Center with the new LLMD there. I haven't heard back yet!
BTW, my information came directly from BJK. Again, please know I wish only the best for Elizabeth and for my dear friends who are helping her.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Elizabeth has worked for many years to find the right doctors to not only take her on with all the complexities of her case --
but that know the sequence necessary to treat her and save her life first, and then help her to regain her health.
She is established w these doctors and has invested a lot into the professional doctor patient relationship, and they have as well.
The needs at this time, are to get her to Reno and get her set up -- to find help for her out there in the home -- and to raise funds for the necessary life saving treatment she needs.
Elizabeth is working on a place to stay n Florida until she can get to Reno.
To be clear that this is not intended to offend anyone, the offers for different types of help and treatments are appreciated and definitely generous.
The best help for Elizabeth right now is to stay focused on these needs. Even considering the drastically different plans and changes is just too much for her right now.
As the communication strays from this it causes her more stress and isn't productive towards meeting these needs or helpful to her current health, as she is in a very critical, fragile state physically.
If anyone has concerns about this reply...please...send me a pm so we can keep the focus in the thread on Elizabeth's actual needs at this time. Ill do the best I can to answer questions.
Thanks everyone,
Ben
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Ben,
Thanks so much for clarifying Elizabeth's needs in such a straightforward, direct manner. That really helps.
I'm worried that it just won't be possible to raise enough money for her in this crappy economy; is there any back up plan? Are donations coming in for her?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Thank you soooooooo much for those who have devoted their prayers,
and those who have sent messages sending donations,
and for those who are passing the email on to their friends and acquaintances....this is amazing and so much appreciated
God Bless
PS- a personal side note: Elizabeth has gotten worse recently, and Im worried, so REALLY...thank you....cant say it enough
also...those sending PM's please be sure your PM mailbox is empty so I can send you reply's, some are full..tks
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
That is horrible to hear she has gotten worse. I'm sure the stress of losing her place to live is taking a huge toll on her.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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How is Elizabeth doing? I passed her website to people I know and am hoping someone can help. Her site really touched me and scared me at the same time.
Does anyone know how things get SO bad like that with Lyme? I know we are all really sick from it but are there a lot of people who get that sick from Lyme?
I have heard of people dying from lyme and have been really sick too - but w treatment things get better for me. I am new to this disease and this site.
Can anyone tell me more?
eagle Posts: 21 | From USA | Registered: Oct 2008
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posted
My mailbox has been cleared for reply, thanks.
Prayers sent for Elizabeth. I forwarded the website to several very active lists around the country.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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Thanks so much for passing the website on, and thanks to others who continue to do so www.helpelizabeth.net
Elizabeth isn't doing well, and the longer she goes without the treatment she needs in her complex case, unfortunately, the worse she will become.
The real nature of Lyme disease and its co-infections, its seriousness in nature, the mass number of cases that go undiagnosed or miss-diagnosed, even the simple fact that it can be fatal, are not well publicly known.
This disease affects each person differently and each person has a similar but different story to tell.
This is the same case with treatment, once finally diagnosed AND getting a doctor who knows what they are doing, there are as many courses of treatment as there are Lyme patients.
In my case, I was progressively 'ill' for several years. Eventually not being able to work, becoming 100% disabled, and then-after seeing top neurologic specialists along the northern east coast-
I was labeled a "medical mystery" and was at that time dying myself as the disease progressed rapidly.
I was infected with Lyme and Babesia (a co-infection) for about only 3 years before treatment and it had reduced me to nothing; having had severe infection in my brain.
So many here went most of their lives miss-diagnosed and untreated,
some with with Lyme and co-infections have had various damage and complications that eventually caused their deaths.
It is scary, but its real and its the truth. below are a couple of links from here on lymenet regarding Lyme obituaries and a Lyme memorial park project:
So as not to dominate this reply with the scary truth that some die from this very serious and dangerous disease I'm also including a link with success stories....
For those with Lyme in general and all those who's cases are extremely complex, like Elizabeth's, its crucial to get treatment that addresses that individuals whole health situation,
from the many, many years untreated and the damage to the organ systems this causes. There is no 'cookie cutter' treatment.
If anyone has anything to add, there are so many here with a vastly more experience and knowledge than I have, could you PM eagle7 some links?
Thanks again for passing on Elizabeth's website.....I cant express how important this is or how much it is appreciated. Thanks also to those again who have donated and are praying for Elizabeth.
Ben
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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posted
^up for Elizabeth^
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Is there some where else to get more information? I'm puzzled about who set up the website?
Posts: 1366 | From Southeast | Registered: Sep 2005
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The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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