Thanksgiving in the Lyme world, 2015
Along with new and continuing challenges for the Lyme community, there is also much to be grateful for. Here’s our Lyme gratitude list for this Thanksgiving season.
Celebrities shine spotlight on Lyme
Singer Avril Lavigne‘s birthday challenge raised more than $60,000 to help pay Lyme treatment costs for children. TV star Yolanda Foster publicizes Lyme through social media and the international press. UK billionaire John Caudwell–whose whole family has Lyme disease–garners major Lyme coverage in the British press.
ILADS treatment guidelines on NGC
The new ILADS treatment guidelines have been posted by the US Government’s National Guidelines Clearinghouse.Ā This is an important step for Lyme patients.
A shift on the scientific front?
The national scientific conversation is starting to include Lyme disease in a way not done before. Examples include Stanford’s MedX conference, the White House forum on citizen science, and last week’s session sponsored by the American Association for the Advancement of Science, which brought together leaders from the Lyme disease research, treatment and advocacy communities.
Real Lives, Real Stories
More than 9000 Lyme patients took our IDSA survey last March. We submitted the results during the IDSA’s public comment period, along with input from 87 Lyme advocacy groups. Click here to read our “Real Lives, Real Stories” report.
MyLymeData
More than 1000 people registered during the first week after we launched MyLymeData, a patient-centered research project aimed at using “Big Data” technology to find a cure for Lyme disease. Click here to learn how you can join, too.
We’re grateful to you, members and friends of LymeDisease.org. With your support, we continue our efforts to empower Lyme patients through advocacy, education and research.
HAPPY THANKSGIVING.
i give thanks today for this EARTH SHAKING NEWS!
i had my husband’s brain autopsied recently. he passed away 11.13.14; and here are the results!!
i’m widow of JACK, who has made WORLDWIDE HISTORY 11.22.15 OF BEING 1ST PERSON DIAGNOSED WITH BOTH: **********************************************************************
BORRELIA/LYME DISEASE AND LEWY BODY DEMENTIA !!
*********************************************************************
NEVER diagnosed with either; had a PARKINSONS diagnosis and EARLY dementia.
drs. REFUSED to discuss BORRELIA to diagnose or treat it even in his final years of life!
i’ll BE-AUTHOR with 1st name billing on the scientific medical article to be PUBLISHED in medical journals!!
i’ll start my work compiling his MEDICAL HISTORY of vital info to go along with the exception blood slides they were able to create to determine these diagnosis!!
article will be published in NEAR future; be on the lookout on this from the 2 below drs. and our OWN, TOM GRIER, MINN!!
*********************************************************************
HALLELEUAH for decided BORRELIA/lyme pathologists only 2 in USA:
PAULA PIERECE, NORMAN, OKLA, a registered Histotechnologist
DR. ALAN MACDONALD, FLORIDA š
bettyg, iowa activist of:
~~~~~~~~~~~~~~~~~
borrelia/lyme/19 CO-INFECTIONS;
lewy body dementia,
Alzheimer’s/dementia,
Parkinson’s,
diabetes, heart, and
cancers:
colon, liver, heart, bone,
LUNG…jack died of LUNG cancer 2 nights after his dx with lung/LIVER cancer
hugs/prayers all ~~~~
Please, please, please tell me how I can get this test done also, even after I die. For myself and my husband. That sounds like one of the best contributions we can make to future generations. I really want this to happen.
Also, you have the proof, they refused to even consider what he died of. You know the doctors. Why can’t you sue the pants off of the doctors, including whoever taught them to not even look for what he died of. They have sued LLMDs for multiple millions. Need I name a few LLMDs this has happened to??? So let us sue the pants off of these criminal doctors and their more criminal Mafia trainers. I hope this happens. It needs to happen. The sooner, the better. The more who get sued, the better for future generations, and those of who suffer currently.
gmd,
i didn’t see this comment earlier.
SUEING DRS; that is NOT my intent at all in what i chose to do to get the SCIENTIFIC FACTS on jack’s autopsy!
having PEACE OF MIND knowing what he DID have vs. what he didn’t have has given me FINALITY that is PRICELESS and now i can have CLOSURE of knowing i did the right thing for ME alone.
i understand completely where you are coming from and why since our ilads llmds have fought for years losing MILLIONS OF $$ .. like our precious no. 1 kids dr. charles ray jones, conn & countless others…
i sent donations for dr. jones court hearings, etc. for years too.
amazing what all he had but he died from stage 4 cancer of right lung & liver. then reading thru these extensive files learned he ALSO HAD BONE CANCER … another reason for the horrific pain he was in at the end of his life.
lewy body dementia causes HORRIFYING, VIOLENT HALLUCINATIONS; i saw this happen over & over plus so many other things.
so knowing this on violent hallucinations, i understand where robin williams state of mind was, the depression he suffered, and his not wanting to be a burden to his family.
picked up 1 more file today to start looking thru for what they need for scientific article on his medical history.
1 more left….antibiotics list from local pharmacy going back as far as possible.
HALLELUAH!! local clinic found PAPER COPIES OF IGENEX IGM/IGG!!
so i’ll be able to supply this info that igenex in calif. NO longer has since they toss files after 7 years!! this was CRUCIAL to jack’s write-up!
he was MISDIAGNOSED FOR 35 YEARS from 1979 to 2014.
i was MISDIAGNOSED for 35 years too form 1969 to 2004!
thank you to the person commenting people magazine said his brain WAS autopsied & found to have lewy body dementia.
however, i’m sure the pathologist had NO knowledge of BORRELIA/CO-INFECTIONS.
glad you found my info helpful i typed on the spur of the moment of what my brain could still remember with my head being on cloud 9 and feeling like a chicken with its head cut off š ha
bettyg, iowa activist….
gmd, i’ll give you the below info/guidance ok?
go here to learn more:
http://www.mdjunction.com/forums/lyme-challenges-discussions/general-support/11457715-dr-alan-macdonalds-autopsy-fundraiser-for-lymealzheimers
alan does this work for DURAY RESEARCH FOUNDATION specializing in SPIROCHETE research.
https://www.gofundme.com/z3v2a2k?utm_source=internal&utm_medium=email&utm_content=cta_button&utm_campaign=upd_n
the entire brain is sent to PAULA PIERCE, NORMAN, OKLA, registered Histotechnologist, who does the STAINING of the slides. once she is done with this intensive process, she sends her stained slides to:
DR. ALAN MACDONALD, FLORIDA, where he’ll do his work using DNA PROBES. this dna probe procedure costs $1,000 for MATERIALS ALONE!!
alan does NOT charge for any of his work!! IT’S FREE as well as the wonderful, educational videos he does showing his results and the slides explaining in detail what he has found.
fyi, i donated jack’s body to DES MOINES UNIVERSITY OSTEOPATHIC COLLEGE for medical students to learn from.
what i did NOT know was this: they remove EACH BRAIN promptly putting it in formaldehyde for preserving it!
their students also learn about the brain.
on 11.13.14, the day of jack’s death, i spent between 4-6 hrs. on phone calling one place after another to see WHO accepts bodies and most importantly, WHO WOULD DO A BRAIN AUTOPSY FOR ME!
found no one on brain donating!! many months earlier i had started the process including contacting our usa’s 1st tickborne center at columbia univ., brian fallon’s center.
i did NOT get help there.
i was very disappointed in that as i had donated $1000 to get their doors open during the final month.
SO HAVE DETAILED PLANS WORKED OUT so you don’t go thru the hell i did on your loved ones FINAL day on earth! just too stressful folks!
i had contact with alan macdonald as i had donated $1,000 to him on his gofundme project to do 20 brain autopsies with his dna probes.
EACH dna probe cost $1,000; so 20 autopsies can be done for alan’s initial goal of $20,000.
NEVER in my life did i expect my/our money to be used on MY OWN HUSBAND’S BRAIN and this historical outcome!!
he asked me what project i’d like this money spent on. by chance would there be a chance that jack’s brain could be autopsied IF DMUniv. kept it?
YES, contact them immediately. i did; they would be DONE WITH JACK’S BODY NEXT DAY. next week he would be CREMATED!
don’t do that until i get ALL specific details what is needed to get his brain sent in special solutions/packaging!
alan sent DMU these instructions; they were misplaced by DMU. i resent them. they sent special form for me to sign to RELEASE HIS BRAIN to be sent to norman, okla.
DMU never told me they had put his brain in formaldehye preserving it the CORRECT WAY!
so check out both links above!
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fyi, i’m also on a committee of 7 people who have been attempting to get UK’S BILLIONAIRE JOHN CAUDWELL to give additional funding on alan macdonald’s DNA PROBE work for the DURAY RESEARCH FOUNDATION.
we initiated a petition in a short amount of time; 1 member sent caudwell a letter along with the petition of 255 names during the short 5-7 days we collected names.
caudwell’s family of 10 members ALL have BORRELIA/co-infections! his 1 son has been bedridden for 10 yrs!!
he’s starting his OWN BORRELIA foundation to help our huge community as the UK doesn’t have help for the “normal” folks who have been bitten by ticks. they have to out of the country to be treated.
john can afford the PRIVATE institutation there who takes BORRELIA cases; extremely expensive!
our small committee of UK, USA, and NETHERLANDS have not heard back even with a reply stating he HAS received our letter only!
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as you can tell, when i get wrapped up in something, nothing is SHORT & SWEET with me; it’s DETAILS galore asked & not asked š ha….
i spent 5 hrs. tonight compiling the necessary details for me to submit for jack’s medical records NEEDED for writing up his DISCOVERY: BORRELIA & LEWY BODY DEMENTIA in his brain!
more things i have discovered while reading from 3 different sources tonight.
2 more sources yet to get & hopefully FRIDAY so i can get this off to tom grier for his/alan’s writeup of the rest + paula’s comments too which will be ALL ANTIBIOTICS given to him…dates, SPECIFIC name of abx, and LENGTH OF TIME taken for! CRUCIAL for this writeup.
*******************************************************
more info i’m learning on this process; sharing my do’s and don’ts to make it SMOOTHER for you all vs. my journey:
WESTERN BLOT PAPER RESULTS; keep 3-5 copies of your igm/igg + co-infection results!
to all,
after i got a CDC positive back on my western blot from igenex stating i have LYME disease JUNE 2004, i decided to have hubby’s blood tested too!
sent it out there; got paper copy back from dr…don’t remember if it was our PCP or my beginner llmd LEARNING FROM PATIENTS.
now that jack’s brain autopsy showed he had BORRELIA/lyme disease AND LEWY BODY DEMENTIA, i need PAPER COPIES of this to provide to dr. alan macdonald for his WORLDWIDE DISCOVERY and writing of his FINDINGS to be published in future SCIENTIFIC MEDICAL JOURNAL!
i used to have both of ours hanging from the side of our 4-drawer file cabinet. so looked there for it.
MINE THERE; jack’s NOT THERE! i would refer to these often over years helping others interpret their numbers.
skimmed 1 huge file looking for igenex form that stands out well; no luck!!
called igenex, calif. for a paper copy of this from testing in 2004.
IGENEX KEEPS RESULTS FOR “SEVEN” YEARS ONLY!
THEN TOSSED!
************************************************************
so have 3-5 EXTRA copies all over the place even with another family member so if your major copies get lost/lost in piles of paper, you’ve got yourself a backup.
i pulled this morning jack’s HOME files from work and our PAID FOR medical copies from our local clinic and 1 of 2 nursing homes.
it’s 6-8″ THICK!
i need in CHRONOLOGICAL order this info at this time.
approximate date he became ill,
all his symptoms back then,
how he was treated,
DIAGNOSED with what,
antibiotics given to him from THEN to the day he died!
doxy, amoxicillin, biaxin, zithro, ceftin
flagyl,
. LENGTH OF TIME GIVEN needed for each;
when did dr. suspect lyme?
WHAT specific tests done
i called/went to local clinic with the PRIORITY things i need from them:
* western blot PAPER COPIES A MUST!
* records of ALL ANTIBIOTICS taken from the time he got initially sick with his UNDIAGNOSED LYME with the dates gotten and LENGTH OF TIME taken.
* so i have called or stopped at our local pharmacy where we got all meds for DECADES until we went to MAIL ORDER thru humana/right source!
* called MAIL ORDER PHARMACIST; she was able to help me using computer records galore that various nursing homes or PCP ordered!
* put in calls to 2 different nursing homes where jack was at telling them i needed their records of ALL ANTIBIOTICS stated above.
* records of any/all MRIS, CATSCANS, & MRA especially JPEG VENTRICAL area.
* i went to local clinic to request copies of
*PAPER COPIES of western blot,
* ABX info,
* MRI, CATSCAN, MRA jpeg of ventrical,
told them, that’s the HIGH PRIORITY needed for my writing jack’s medical history to submit to dr. macdonald for him/tom grier to write this up to be PUBLISHED for medical journal and announced to the WORLD!
later as time permits a paper copy of ALL his medical records/tests going back to 1979 when he got DEATHLY sick and bedridden for about 3 wks.
sharing this info so you have a BACKUP PLAN ON IMPORTANT WESTERN BLOT/CO-INFECTION TESTINGS, etc.
* started reading thru my daily JOURNALS i’ve kept since a TEEN! now that i’ve got a year narrowed down, that is helping.
* just remembered another source of QUICK INFO for me, looking for my annual CHRISTMAS LETTERS outlining the highlites of the year!!
* i knew they would come in handy for something else besides for family & friends. NOW SCIENTIFICALLY ~~~
hope you have learned what NOT to do from me ok Wink please feel free to share this with others in our BORRELIA/co-infection community…thank you!
bettyg, iowa
47 yrs. chronic BORRELIA patient
35 yrs. MISDIAGNOSED by 40-50 drs.
UNACCEPTABLE
~~~~~~~~~~
future CO-AUTHOR of jack’s scientific medical worldwide discovery of
BORRELIA AND LEWY BODY DEMENTIA IN ONE BRAIN with 3 other gifted drs. with special talents and genuine concern for the BORRELIA/CO-INFECTION COMMUNITY!
i’m still speechless about my name being included and especially as LEAD co-author!! who knew???
HAPPY THANKSGIVING to all! may you savor each minute, hour, and day with those special loved ones who you do NOT want to take for granted for being here tomorrow or next thanksgiving!
if you are the SILENT TYPE, break that spell and tell your loved ones how much they mean to you!!
i talk daily to jack about how much i miss him.
i would have CHANGED NOT spending 6-12 hrs. daily here … broken up helping this community as much as i have the last 11 years since my correct diagnosis!
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ANOTHER PROBLEM incurred yesterday at local hospital; they demanded a court order from the judge stating i was jack’s executor. once they had a copy of this court order; i could get his files!! i was one UNHAPPY CAMPER!
told her i’d contact the ceo of the hospital; i did! he was gone due to day before thanksgiving. i explained to 1 of amin secretaries who talked with remainder of top mgmt there. they’d get back to me.
on way to nursing home to get his records, they called back. BRING IN A COPY OF HIS DEATH CERTIFICATE; we’ll give you records; we let the records supr. know this!
so i got them promptly then….NO CHARGE!
Q/A asssessent for lewy body dementia
http://www.mdjunction.com/forums/lyme-challenges-discussions/facts/11480597-lewy-body-dementia-ongoing-in-association-wborrelialyme#11480597
alan would like to make contact with ROBIN WILLIAMS’ WIFE/FAMILY since robin had LBD; that’s why he commited suicide. i’d love to talk to her also as a SPOUSE with LBD and BORRELIA! i bet robin was bitten by a TICK TOO!! we’ll never know; just guessing!
gabby bettyg signing off; now aren’t you glad you asked this windy character š ha
may i suggest you print off the above info i have furnished you and anyone else replying to this post!
I am very glad I asked you. I don’t know if I can keep up with all that you did, so much energy. But you really did give a good summary. I do so appreciate it. I know about the thick records too I am going to try to follow your example. You are to be congratulated for your extreme effort. What an asset to those with Lyme and to the next generation of sufferers. Maybe they/we will get help. I agree with you about Robin Williams. Nobody, especially a successful person, just commits suicide. Any sane person is driven to it by the torture they are going through. It just gets to be too much to bear. I think Robin was quite sane, but tortured. I have always thought that. I have a few others on my list that I think the same thing about, but will keep my thoughts on this to myself for the time being.
Not sure if you caught the article about Robin Williams in People. He had been diagnosed with Parkinson’s before he died. An autopsy was done and he actually had Lewy Body dementia. It’s what drove him to suicide.
I’ve seen the You Tube video from Dr. Alan MacDonald linking dementia to Lyme. Robin Williams also had depression for years, a common Lyme misdiagnoses. Wonder if he really had Lyme?