Lyme Disease Support Group

Tom started a 501c non-profit, the name will be in my 2nd post as the abbreviation I get transposed each time I type it; so I can just cut/paste it and the details on next post.

This post will deal with what you need to do IF you chose like me to have your brain removed and sent to OKLAHOMA’S EXCALIBUR LAB to the female tom has made arrangements with to do the thorough autopsy.

Here are the starting points I have found with the help of Tom and on my own:

• DISCUSS IN DETAIL WITH YOUR LAWYER. You could copy my 2nd post to take to the lawyer with you.

• YOU NEED A DURABLE POWER OF ATTORNEY, DPOA, FOR THE DISPOSTION OF YOUR BODY!

• You need to select a person who will CARRY OUT YOUR WISHES! In my case, hubby doesn’t believe in this; so I won’t ask him since he will not fulfill this wish of mine.

• If my nephew/lawyer declines, I’ll ask our niece to be mine.

• IT HAS TO BE IN YOUR WILL OF HAVING YOUR BRAIN REMOVED using the specific instructions from the OKLA pathologist who will do your autopsy.

• YOU MUST NAME THE PERSON YOU SELECTED TO DEAL WITH YOUR DISPOSITION OF YOUR BODY.

• I’m asking my lawyer/nephew to be my designated DPOA.

• If the DPOA doesn’t honor your wishes, the will, will stipulate a penalty fee of $5,000 for the autopsy which costs $3,000 to do as is! So it’s to the estate benecifiaries benefits to honor your wishes by $2,000 !!

• You need to state in your will also which medical place will be removing your brain. Show …………. Pathologist in …………, Iowa will perform my brain removal.

• You don’t want a specific person’s name there in case they are on vacation, sick, deceased, or no longer working for that place!

To my lawyer,

Would YOU be my durable POA for the disposition of my remains so I can have my brain removed and sent to OKLA. for a brain autopsy for my chronic LYME disease?

Since we've talked to you about our will, my request for LYME DISEASE STATISTIC PURPOSES, and you've known me all your life, you know how IMPORTANT this is to me. Will you accept my request to do this?

Hubby and I met with local pathologist who is also the county’s ME/MEDICAL EXAMINER on Tues. for 30 min.

• ME/pathologist stated he would NOT be signing my death certificate since he would NOT be doing a complete autopsy on me.

•

• My primary dr. would have to sign it.

•

• my concern is that it should show I died from CHRONIC LYME DISEASE complications due to diabetes, heart, etc.

• ME will discuss my wishes with my primary dr. since he sees him regularly that I want it to show on my death certificate LYME DISEASE complications.

• ME stated it would take him 4 hrs. To remove the brain intact; he ball parked it to be $500 - $750 for his time; surprised me on how many hours it would take!

we 3 discussed; both felt I was jumping the gun on making arrangements. ME had NEVER talked to anyone living pre-planning an autopsy on themselves.

I think this covers what we discussed that pertains to the will/DPOA for my remain disposition.

1. Last week when I had my primary appt. I informed him what I was doing. He informed me he didn’t need to be involved in this.

2. Well, after talking to the ME/pathologist; he WILL be involved in signing my death certificate.

FUNERAL HOME ARRANGEMENTS

• I visited 2 out of 3 local funeral homes about what I wanted to do and got their price list.

• It pays to shop around; several thousand $$ cheaper so far, and I’ve not worked on deciding who and details of what I want there.

• BRAIN AUTOPSY WON’T AFFECT AN OPEN CASKET viewing....that was my hubby's main concern.

Pathologist needs to do certain things for the funeral director for embalming purposes making it easier for them to do this; you learn something every day.

Haven’t done anything more on making my funeral home selection and completing the paperwork there. Will be working on that more.

I’ve had my funeral details all ready since 1979 when my MIL passed; I’ve updated my details/hubbies as varius family members died.

More work to be done on updating our will since hubby has 2 adult kids from previous marriage. 1 who sees/calls us; other one who doesn’t! he wants to treat them EQUALLY; NOT me!

I was looking also in to a REVOCABLE LIVING TRUST so nothing goes to probate:

• PRIVACY of what was in our will and who gets what; but lawyer nephew said THEY ARE NOT PRIVATE!

• Would be no court costs; lawyer wouldn’t get big bucks to handle our estate, etc.

• We’d have to get everything changed into revocable LT name.

• I found more problems for our situation then benefits; so dropped that idea.

So been super busy the last 6 weeks dealing with arrangements for my brain autopsy in NOT foreseen future and updating our will.

Plus we changed health insurance cos. Since we were paying $1,213/month; it was going up another $600 for bcbs. Found out we could reduce it $600 by getting silver script on meds but it would still be over $1,000/month for the 2 of us.

So I started looking around and have gone to HUMANA CHOICE PPO. I didn’t know it was MEDICARE/DRUG together; I thought it was a supplement like bcbs was. So have been learning a lot, and huge booklet sent to us to read over and get to know NEW policy.

We pay only $21/person/month so $42/mo. for the 2 of us compared to the outrageous $1213/month.

We will be paying out of pocket for things.

Meds are on the 3 tier plan; we’re on tiers 1 for $7/med, and 2 are $42/month/med.

If we go to MAIL ORDER RX MEDS, it’s supposed to be FREE for 1 mo. At a time meds! We’ll see; I’ve asked dr. to email them to get us started on their program.

Many FREE preventative programs: mammogram, prostate, eye exams, physicals, pap, diabetes mgmt, etc.

Maximum per person is $4500 OUT OF POCKET plus meds.

When checking out other companies, BANKER’S LIFE TRUST insurance stopped to leave UPDATED Medicare info; a ploy to get in the door.

Well, they checked, and I was ACCEPTED FOR HOME HEALTH CARE/NURSING HOME INSURANCE!! Surprised the heck out of me since I/we’d been turned down earlier by other companies.

Hubby couldn’t get with them but I can. So got paperwork on them too so need to get it read and meet with them to discuss I understand it 100% in future.

So I’ve got piles of READING all over my house that doesn’t get dusted but once a month vacuuming which his so hard on my hearing!

Plus working on here daily leaves me no time.

Now to prepare 2012 paperwork to keep track of all the tax deductible stuff and finish 2011 paperwork to take to the lawyers end of February after getting all the tax info from all involved! UFFDA!!

So part 2 will be the info I received from Tom Grier on his autopsy project and name of his 501c plan.

Bettyg, Iowa lyme activist, group leader

All donations are tax deductible.

Here is a simplified synopsis of what should be done to register for medical research and brain donation for pathology studies.

1) Discuss wishes with family and lawyer.

2) Consult a local doctor or pathologist ahead of time about harvesting tissues.

(We will provide a very short and concise instruction sheet on what to harvest, how to prep it for shipping and where to send it.)

This cost varies but local harvesting should be under $500

3) Add a codicil to the will, an addendum that states a certain amount of money will be set aside in the estate for the purposes of an autopsy specific to look for spirochetes within the brain.

(Because so many families disregard these wishes when death occurs we have found that a codicil that states something like the following works the best:

Codicil - At the time of death we wish to have the brain harvested for medical research and sent to Excalibur Lab in Oklahoma:

we are setting aside a total of $ 3000.00 for the collection, preparation and shipping and initial research specifically to search for Borrelia spirochetes and also the storage of prepared tissues for 10 years for future research.

If however this is NOT done for any reason according to our desires then, we put aside $ 5000.00 from the estate to be used for Lyme disease research and education and to be given to the following organization: MIBDEC )

We found that if there is a penalty clause for not doing the harvesting and autopsy, then the the surviving family is more likely to do the research.

Too often the family completely ignores the deceased's wishes and cremates the body. This just happened Dec 14th in Duluth.

Tax deductible organizations that can facilitate research are:

MIBDEC,

Canlyme, and

Judith Miklossy's European Consortium of pathologists,

however MIBDEC is in need of support to continue our current efforts.

4) Harvesting: Once the patient has died the contact physician needs to be notified and the body moved to where the brain can be harvested this is either a funeral home or a hospital morgue with autopsy facilities.

In general the the simplest thing that can be done is the brain is removed intact and shipped to Excalibur Lab in Oklahoma where Paula Pierce will prep it for both immediate research and fix samples for future research.

The brain is usually shipped in a clean 5 gallon container properly sealed.

Prepping the tissues:

This includes the use of special techniques including: Silver stains (Warthin, Starry, and Steiner stains) Immunofluorescent color stains that are specific for Borrelia, paraffin fixation of tissues from multiple site biopsies, PCR tests, and possibly serology tests and antigen capture tests.

Fresh tissues can be frozen at -70 F and fixed tissues have a shelf life of over 10 years with no refrigeration.

Other tissues that are helpful:

Whole blood or serum, CSF, a bladder biopsy, heart biopsy that includes purkinje fibers, then any biopsy of any tissue that is symptomatic such as a synovium biopsy from a swollen knee joint etc.

The whole brain can be shipped fresh or in formalin, the lab will inform the local doctor on what to do if fresh tissues are needed that are not fixed in formalin.

5) Research:

Initially several things will be done immediately, but searching for visual spirochetes in brain tissue is a laborious and time consuming job and can take over 100 man hours. So it is easy to see how and why $ 3000.00 for research is only a beginning and not a complete analysis.

Let me know if you or your nephew needs more info? TOM GRIER, MINN.

fyi, we are updating our wills; if we end up with money upon both our deaths, i want money to go to LYME CHARITIES; TOM'S IS ONE I'M SERIOUSLY LOOKING INTO.

he explained to me mayo clinic just published a new report on brain earlier this month, they did half the work; not the CRUCIAL part that would have helped us lyme-co-infection patients.

that's what tom's non-profit is doing; finishing what mayo clinic started so it can be PUBLISHED and have leverage on changing things in out lyme/tb community.

bettyg, iowa lyme activist/leader

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MIBDEC Projects:

* MIBDEC was the first organization to have an International Lyme patient survey that addressed over 100 data points (Over 2000 surveys sent by mail and thousands more by e-mail in the year 1999

* MIBDEC issued a warning about Lymerix vaccine a year before its release and continued to warn against OSP-A antigen as a potential cause of autoimmune arthritis in Lyme patients receiving the vaccine.

* MIBDEC administered a 26 MS patient antibiotic treatment study showing more than 15 % of MS in Northern MN is misdiagnosed and is actually Lyme disease

* MIBDEC has been and is currently shooting a Lyme disease documentary following several families in Northern MN

* As executive director of pathology studies I oversee the registration and administration of registering patients for brain autopsies and collating data

* A MIBDEC person continually answers emails and telephone questions of Lyme patients throughout the world

* MIBDEC provides educational lectures on Lyme/MS every month

* Currently MIBDEC is preparing several new DVDs for patient education including one on medical scams, treatments, diagnosis and dubious medical practices and procedures.

* Currently MIBDEC is doing a quality of life survey in retirement among forestry workers showing an increase in MS, ALS, arthritis and dementia in workers at high risk for tick bites.

* Currently accepted an invitation to help organize a chronological sequence of what led to Lyme disease as being misunderstood starting with bad science and incorrect assumptions.

* Currently posting new articles on the internet within the public domain for patients to have free access to medical information about tick-born illness.

* Currently creating new lecture DVDs

* Currently speaking on National radio shows like Coast to Coast about Lyme and MS.

thank you for each of your touching replies back.

doug, i've sent tom grier a note as he sent me something else tonight, so it was good time to reply on both things.

i've asked specifically about ALL CO-INFECTION TESTINGS AS WELL AS LYME.

he will be writing up specific instructions for the pathologist i have chosen to follow when removing my brain and preparing it to be sent to his designated lab in OKLA.

i told him i'd be posting both things; specifici instructions for pathologist/ME and his reply on CO-INFECTIONT TESTINGS.

*********

as different things pop up since i'm in the beginning process of trying to get this done, i'll post as they come up so you can follow along this timeline of things.

1. my nephew lawyer wrote back informing me this DISPOSTION OF BODY form is only as good when I'M ALIVE.

would my husband fight HIM if he accepts to be my designated person to make my final dispostion of my body arrangements? he didn't want to be caught in the middle of things.

he sent me a copy of this dispostion of remains form, tomorrow i'll try to COPY/PASTE it to myon going thread here.

2. talked to my hubby about nephew/lawyer's note informing him 1st of his 4th child's name to be born jan. 1.

asked him point blank if he will fight my nephew to have my brain autopsied. YES, I WILL! i asked why; just because.

no, i want a specific reason; no comment. he'd sleep on it.

3. when we were going to bed, i checked here quickly for anyupdates on this post; none; so kim, doug, and irenwill, i read him your touching notes.

he didn't say anything then but asked another question or 2; would this be done to me here in town? yes, at hospital. that made him feel better.

so he'll think it over thoroughly; all decisions from him are thoughtfully thought out. i'm the spur of the moment maker. but i feel he's mellowing some.

so that's the latest. that's the facts and i'm sticking to my story.

bettyg

Post edited by: Bettyg, at: 01/13/2012 03:28 AM

he emphasized again IF I/WE CHOSE TO GO THRU WITH THIS in his letter.

he made sure to say on there that he nor his other 2 co-workers would NOT be signing my death certificate unless unusual circumstances led to my death; fire, etc.

also, he quoted me $500-$750 to remove my brain; NOPE: $1,000 !!

so now we have $4,000 involved in this process; $1,000 to remove brain and $3,000 to okla lab to do the actual autopsy.

i tried to copy the DISPOSITION OF REMAINS FORM here, but it wouldn't copy since it was a pdf and i don't know how to copy/paste that here any other way than what i do for normal copy/paste jobs.

so this is today's updates on my future autopsy.

i'm FINE with all of this. i started dealing with close deaths in 1979 when my MIL passed at thanksgiving time.

at that time, i started obituaries on both of us and got special booklets to prepare for all of this completing that type of info showing where all important papers are, who is who in our financial lives, etc.

over the years, i've reviewed them all, and updated them as necessary.

so these are the close relatives i've lost starting with 1979:

1979 - MIL, 62, diabetes coma; she had lost her toes earlier and then her leg to her knee from uncontrolled diabetes. so that's why it's important to me to get MINE under 7.0; now to lose this extra 100 lbs. i'm logging around! uffda

1989 - stepdaughter's husband killed in car crash; car torn in half. later learned he had a hekyl/jekyl personality; other half was a drug dealer! shocked speechless on that one.

1990 - my beloved MOM, 68, from carcinoid syndrome tumor cancer that had advanced to the liver before she was correctly diagnosed ... taking them at least 7 yrs. to get it right.

1993- my youngest brother's wife, died at age 40, yes 40, of EARLY ONSET ALZHEIMER'S DISEASE! she had this between 8-14 yrs, and treated for severe depression.

she left daughter, 16, and son, 13; son never knew his mom well. he'd MOMMYSIT her on weekends so her parents could get respite. brother worked FT and farmed family farm; 2 jobs paying nursing home bills later on for 1.5 yrs.

mayo clinic took her brain and took 4-5 months for her autopsy of early onset AD.

now i feel she too was bitten by a tick/s since they farmed parttime with my dad on our century farm. she was exposed over and over to ticks:

walking the beans, picking up rocks in fields, harvesting the crops, and mowing the huge yard/lane, etc.

i'm guessing they NEVER considered lyme/co-infections; but i'll never know for sure.

1999 - my beloved ONLY sister, age 41, to advanced breast cancer in liver. age 32, 5 months after we buried mom, she was dx with 2 different types of breast cancer. she had chemo/radiation, and declared CANCER FREE.

6.5 yrs. later, the bc in lymph nodes traveled to her liver; we had her another 2 yrs, 1 mo, and 3 days. she left son, 14 to be 15 next month, and daughter, 11, who was sick her entire life!

2001 - dad, 86, died from congestive heart/kidney failure plus uncontroled diabetes. now i know too he had UNDIAGNOSED LYME/CO-INFECTIONS based upon his lifetime of health problems. LYME/COs were never brought up.

2002 - husband's ex; mother of my 2 step-adults, from lung cancer due to smoking. i went to every cancer appt. she had so i could fill in both kids, etc. later we became close friends, and i made her death arrangements for her since she didn't have a funeral.

this is life; full of CHALLENGES; good, bad, and the ugly.

we're working our way thru this; i don't know if i'll be able to get thru him to HIS COMFORT level of what i want to do for myself/lyme/co-infection community.

i do think my reading him the 3 comments from you, doug, and irenwill made a HUGE difference on him. we've not discussed this today.

however when i told him the pathologist added a PS to his letter of $1,000 to remove my brain, he reacted! PURE SHOCK.

so this is old hat for me.

i was present at the times of these deaths:

mom, dad, SISTER, AND KID'S MOM

each one makes it easier to deal with death.

perhaps since i'm in good shape actually make this even easier.

IT'S THE FACT OF HAVING CONTROL OF WHAT I CAN CONTROL at this state of the game.

love you back kim,

bettyg, hug/prayers to all reading my adventure too

Post edited by: Bettyg, at: 01/13/2012 04:00 PM

Post edited by: Bettyg, at: 01/13/2012 11:38 PM