Eighty-two Years as Chronic Lyme Disease Patients

In 2015, Dr. Alan MacDonald, director of the Duray foundation and his colleagues tested Lewy Body tissue in the autopsy brain of Jack Gordon, who had Lewy Body Dementia. For the first time ever, Borrelia was detected in this tissue.

Below, Jack Gordon’s widow writes of their decades-long ordeal as victims of chronic Borreliosis, unacknowledged by the medical profession.

 

Eighty-two Years  as Chronic Lyme Disease Patients:

Betty and Jack Gordon, Iowa

 

by Betty Gordon

May 2016

 

Well, would you believe that Jack and I have 82 years involved in being misdiagnosed  and having CHRONIC LYME DISEASE?

I was happy to get involved in completing yet another Lyme survey on my behalf! I don’t pass any of them up.

I got sick Christmas season 1969; felt like a cold/flu hit me. My 1st WRONG diagnosis was mononucleosis.  requested I be in bed 2 weeks.    You don’t forget that when you are 20 years old and constantly on the go!

 

From there the endless symptoms kept multiplying:

super sensitivities to:

lights, glare, and reflection are like looking directly at the SUN; so very painful to my eyes!! Jack used to kid me we live in a morgue; so dark.  But when his Grave’s disease of his eyes acted up, we had the room even darker.   He would have to wipe his eyes immediately when they teared, they would STING horribly otherwise.

noise has been amplified from the beginning.

Do you know what it’s like living next to 16 yr. old whose involved in driving drag racing cars tuning up the engines with NO mufflers on them and ALL his friends here too?

Noisy next door neighbors who park their vehicles in carport right next to BOTH bedroom windows slamming their car/trunk doors continuously coming and going 20-30+ times a day/night!

chemical smells where I couldn’t breathe around them:

cigarette/cigar smoke and ON their clothing; perfumes/after shave lotions; hair perms/colors…can’t be in salon where they are getting them done NOR painting their finger/toe nails!

cleaning supplies; office supplies that have smells; aerosol cans; some foods & restaurants;

couldn’t go to a grocery store for 5 years! Jack went on my behalf until his health got bad.  There are many more things I won’t mention;  you get the idea right?

irritable bowel/bladder syndrome;

heal spurs and plantar fasciitis;

migraine headaches;

painful periods; fibroids; painful sex;

painful joints, muscles, etc. that won’t go away;

fibromyalgia in all 18 of 18 pressure points in body;

chronic fatigue syndrome;

TM Jaw;

had my left hip replacement replaced 9 yrs. ago this March;

2, I had my right knee replaced; bone on bone! I had surgeon remove synovial tissue and the Meniscus tissues and cartilage (but not bone) being sent to Dr. Alan MacDonald for biopsy results; still awaiting the results since he’s been busy on world-history breaking brain autopsies galore!

I’ve had 14-16 major surgeries to date!

diabetes 2;

sleep apnea requiring me to wear a CPAP when sleeping;

It took 35 years of hell to be correctly diagnosed in July 2004 after seeing at least 40-50 drs., after my western blot blood tests came back from IGENEX.  

I was CDC POSITIVE from IGENEX LAB, Calif. so I was counted in Iowa’s CDC Lyme statistics map.

Then our local large clinic had me give more blood sending it to MAYO clinic; came back NEGATIVE since they tested only 2 and 5 bands for each! SURPRISE; surprise!   Hasn’t changed in 12 years on their correctly diagnosing and treating Lyme and all co-infections.

 

I worked full-time the entire time I was sick as a secretary typing legal agreements for the Iowa Dept. of Transportation in various depts.

I took so much sick leave especially being off 4-6 weeks after EACH major surgery. I was talked to all the time about the huge amount of sick leave I had taken.

I was the no. 1 user in my division of about 2,000 employees!! Who wants to be known that way?

In late 1979, Jack got really sick after working at his brother’s home helping to build an addition onto their kitchen.

He was home sick 3.5 WEEKS. He never abused sick leave; if he was home for 2 days…he was really sick.  He had to be almost on his death bed being home almost 1 entire month!

This began his weight loss of 100 lbs. He was diagnosed with Grave’s disease; he took a radioactive iodine pill to kill the thyroid.

Same time he was diagnosed with Hyperthyroidism; his heart was racing fulltime; so weak, profuse sweating, etc.  His meds for thyroid changed constantly.

Tremors started at that time.

10 years ago, he was diagnosed with ESSENTIAL TREMORS; not Parkinson’s disease.

his symptoms continued to add up: gait and balance were tremendously off; began the blank STARE; expressionless facial features; hallucinations, falling, etc.

5 years later finally diagnosed with Parkinson’s disease.

2-3 years ago his VIOLENT hallucinations started with him where he would wake up SCREAMING and scared!! These were becoming more frequently.

He was talking to people NOT here in the home.

He’d go to back door and talk to people NOT outside.

1 night he dished us up ice cream bringing in 3 dishes. Who is the extra dish for?  OTHER BETTY sitting by you!

At 1 time there were 3 Betty’s living here in his mind.

I was NOT his wife of 40 years.

This was NOT his home and we’d lived here 39 yrs.

He saw two imaginary foreign young boys for 2 weeks talking to them every night while I was on the pc next to his bed. I wrote or typed his comments 1 night and then read them back to him the next day.  DON’T do that again; I didn’t.

He woke me up 1 morning asking me WHO were these 2 boys on the basement stairs; no one there but we did have 1 young neighbor boy who visited us often.

The dementia became more obvious all the time. I tried talking to him about it, but he was in complete denial.

Later I hired home health care to come in to give him a shower, work on his toe nails since he had horrible hammer toes and bunions creating endless pain for him.

I got the ALERT button so I could leave for short errands and feel he WAS safe by pushing the button for emergency help if he fell. He NEVER used it ever in 4 years.

When he knew he was falling, he’s just SIT down never hurting himself.  The emts and firemen knew me by 1st name coming up our driveway saying,  “where is he this time?”  Most falls were in our 4’x4′ bathroom; no room to work on getting him up.

March 1, 2014, he wanted to have a serious talk with me.  He told me, “I’m not happy with our relationship and want to go live ALONE”!

Can YOU imagine how hurtful those comments were to me since he was becoming very exhausting care giving for him?

I explained I’d been helping him for 6-8 months lifting his legs up/down getting in/out of bed.

I had to walk backwards leading him from 1 room to another.

Helped him get in/out of chairs except for his lift-out recliner which was a godsend to my BACK!

He really seemed to make sense otherwise than the statement of his wanting to live alone.

March 20, he had 48 hrs. of diarrhea. The firemen were here 3 times getting him off the floor since he had no strength; just so weak.  I had him taken to ER; admitted to hospital with that and pneumonia.

Right before this, March 3, his daughter’s husband committed SUICIDE in Tulsa, Okla. since his body was full of cancer.  So I was in process of flying down to get her driving her home to live with her Dad and me.

March 23, his kidneys shut down. I was afraid he would NOT make it thru the night although I didn’t know it WAS his kidneys acting up then!

My last aunt who would have been 102 in 2 wks. passed away; her funeral was on same day I flew to Tulsa to bring Tammy here.

March 31, Jack was dismissed at hospital; he was moved to 1st nursing home 5 minutes away from our home.

HORRIBLE conditions with non-stop bells/alarms going off 24/7 with SMALL nursing/aid staff.

There he kept trying to get out of his wheelchair since he was too weak, NO balance to walk, and could fall. He fell twice there bad.

I demanded x-rays be taken; they found 2 broken ribs on left side from his Father’s day fall.

Nursing director then told me they could NOT satisfy me since I pointed out what they were doing wrong in Jack’s care. Here’s a list of 5 places; 1 has an opening for a male now.

That weekend was a business fair; I went to it not looking for a 2nd long term place, but found it in next small town.

One night his mind was working correctly, and he told me,  Betty, I love you more than you will ever know; thank you for taking care of me so well during this time”.   
 
This made up for the night when he told me he wanted to go live by himself.   That was Jack’s way of telling me he was ready to go to Heaven where there is no more pain and suffering any more.

Moved Jack there July 22 where he lived in good, clean place, QUIET environment with alarms only in beds, wheelchairs, and dining chairs when folks got up when they were not to.

They had twice the staff and gave good TLC to all. I requested he be allowed to be in his room in his life-out recliner watching his favorite TV shows unless he chose to come out. They let him but kept a watchful eye out on him.

He NEVER tried to get out of wheelchair there; he tried to take his chair apart all the time!

Before I moved Jack to 2nd nursing home,  his mind was working perfectly one afternoon/evening.   We had some great talks.  When his aid came to wheel him to his room,  she said, “Jack, it’s great to have you here with us tonight”.    Jack replied promptly, “I KNOW WHEN I’M HERE AND WHEN I’M NOT HERE”! 
 
I rushed to his room hoping to expand on what he stated when his mind is working and when it’s not, but he stopped talking about that.  With Jack,  you don’t pursue a conversation when he’s done with it.

Jack kept running low fevers which I brought to their attention. He then got a deep bronchitis like cough which led to pneumonia.

He was taken to their local ER; where they took a chest x-ray finding a small spot on chest. They asked if I wanted to cat scan done or mri; YES.

CT showed stage 4 CANCER of right lung/liver areas! That shocked the heck out of me as he hadn’t had any cancer except a few skin ones on his face that were “frozen” off!

Jack died 2 nights later!!

His final day, I spent majority of day calling places to see who would take his body for MEDICAL STUDY. Finally found Des Moines, Iowa Osteopathic medical college would!

BUT they would NOT do any brain autopsies which I wanted done. They DIDN’T tell me that all body donors had their brains removed, placed in formaldehyde, and used to teach students too.

Later, Dr. Alan MacDonald, Florida pathologist, told me it wasn’t too late to have a brain autopsy done IF they had done the correct procedure.

So I had Jack’s entire brain sent to Norman, Okla. to Paula Pierce, who has small lab there, Excalibur, who did the 1st set of blood staining slides galore.

She sent finished slides then to Alan for him to do DNA probe slides, which cost $1,000/patient for materials alone. Paula/Alan both do this FREE!

Both found Jack’s brain made WORLD-WIDE NEWS!! These 2 diseases were found that had NEVER been found together before!

BORRELIA/Lyme disease and LEWY body dementia causing VIOLENT hallucinations like actor/comedian Robin Williams had.

Since Jack was the 1st case discovered, he’s being written up for a SCIENTIFIC MEDICAL JOURNAL with guess who as 1st CO-AUTHOR … ME, a non-medical person over 3 medical people!!

a photo poster of Jack’s brain showing lewy body dementia, LBD, and Borrelia is in the link below.

ALL YELLOW is LBD;.

the red is Borrelia in spirochete and cyst forms; separate slides showed granular as well.

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/11488204-betty-husbands-brain-biopsy

other details can be found here:

http://www.mdjunction.com/forums/lyme-challenges-discussions/facts/11480033-112215-hubbys-brain-lewy-body-dementia-borrelialyme-disease

Jack’s poster board can be found below with another man’s SAME diagnosis as Jack found 2 weeks later!

http://f1000research.com/ posters/5-127

Last week, I sent my corrections/additions to Tom Grier, microbiologist, Minn. and now VP/TREASURER of the DR. PAUL DURAY RESEARCH FOUNDATION INC. org that will do these detailed blood staining of all brains having:

MS, Parkinson’s, Alzheimer’s, dementia, & Borrelia/Lyme!

 

So hopefully Jack’s article will come out in future of an unknown named scientific medical journal!

 

A VICTORY FOR ME having closure of knowing what Jack HAD vs. what the drs. MISDIAGNOSED him with!

It is peace of mind knowing what Jack HAD vs. what he didn’t have as diagnosed by other drs.

 

For the last 9-10 years, I have sent out ILADS LLMD names/info galore on 3 Lyme disease boards I’ve been on.

I’m the group leader found here:

http://www.mdjunction.com/forums/lyme-challenges-discussions

To date, I have way over 90,000 – 100,000 posts, replies, and emails sent, etc.

I’ve been involved in contacting congress, my state legislature, writing newspapers, and anything else PROMOTING LYME/CO-INFECTION diseases caused from ticks!

 

When Jack’s scientific medical journal about his BB/Lewy body dementia is PUBLISHED, I’ll post it everywhere 😉

Lymedisease.org will be making changes so we can answer for our passed loved ones, like my husband, Jack, so I can complete the my data survey on HIS behalf! CAN’T WAIT 😉

 

END

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