I found the cause of last month's col... - Advanced Prostate...

Advanced Prostate Cancer

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I found the cause of last month's collapse

GAdrummer profile image
19 Replies

After further research on the symptoms of last month's collapse and their possible causes, I had a suspicion that the culprit was the filet mignon. Regular food poisoning should have left some traces of the causative organism - none were found after testing blood, urine, etc. The restaurant is a high class operation, I did not want to besmirch its reputation. So when the one month recheck with the primary care doctor drew near, at the blood draw the week before, I asked the nurse if another test could be added to rule out a possible cause for the collapse. She checked with the doctor who agreed to add the $50 test to the order. A week later after the usual preliminaries, the nurse appeared with the test result and was delighted to announce that my husband is positive for alpha galactose syndrome: he is now allergic to beef, pork and lamb. The primary doctor came in and wanted to know who had asked for the alpha gal test? I raised my hand. He then proceeded to thank me, alpha gal had not been on his radar even tho he knew I have alpha gal. It was a reminder to him, as his practice is now primarily rural. In my neighborhood the deer carry the lone star ticks from cow pastures to mini-farms with sheep, goats, hogs and horses. Chickens run loose all over the place.

Now we know how to avoid a repetition of that horrible night that led to 3 days in ICU. But it raises a new question: How will alpha gal affect the lifespan of my husband's bovine aortic valve replacement that he had almost 6 years ago? The doctors will have to avoid using heparin on him. What little data there is indicates heparin usage causes a fierce reaction.

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GAdrummer
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19 Replies
dico profile image
dico

Wow! So glad you found the cause. Thanks for sharing.

Kaliber profile image
Kaliber

good find ….

❤️❤️❤️

Formosan profile image
Formosan

I thought as a PCan sufferers, we should avoid eating four legs's meat such as lamb, beef, pork... I have been trying to avoid those. I heard even egg is not good for us. Am I right?

Maxone73 profile image
Maxone73 in reply toFormosan

Seems so according to statistics and experiences…but who knows? Eggs have a choline problem in their yolk.

85745 profile image
85745 in reply toMaxone73

From what I read yes the egg yolks are choline rich, but the the egg white has zero choline, so why do they demonize the entire egg . I do not make meat a part of my weekly diet but do enjoy a ground beef patty 1 or 2 times a month. That said I am more concerned with the official narrative on fruit and whole grain recommendations. Maybe in the long view might be more about where and how are food is grown over what we eat. I am on a restricted diet no sugar or fruit mostly plant based but fish, egg whited lean ground chicken breast.

SteveTheJ profile image
SteveTheJ in reply toFormosan

Not me, I eat the crap out of anything, even if it has 3 legs.

j-o-h-n profile image
j-o-h-n in reply toSteveTheJ

Two legged out of bounds?

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/13/2023 6:22 PM EDT

MouseAddams profile image
MouseAddams

I am so glad you knew to request the special test for your husband. I know how hard it is to work around food allergies as hubby has had many since 1997. Like your husband any of them could have sent my hubby to the hospital. I suggest you get an appointment with an allergist to rule out any other issues.

As for the heart valve issue check here on the health unlocked… type your question into the search bar at the top of the page. There’s several groups here that might have answers.

SeosamhM profile image
SeosamhM

Another "Wow"... great detective work, great knowledge, great advocacy! And great questions for the future, unfortunately.

j-o-h-n profile image
j-o-h-n

Good Heavens and heaves, not another shit to worry about?........

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/13/2023 6:35 PM EDT

j-o-h-n profile image
j-o-h-n

Well at least you beat that one..........

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/13/2023 6:36 PM EDT

GAdrummer profile image
GAdrummer in reply toj-o-h-n

Kudos to the jeweler who took my husband's med alert bracelet and overnight added "alpha gal" to the warning and refused to charge him for the service!

j-o-h-n profile image
j-o-h-n in reply toGAdrummer

Yep, you got yourself a real jewel of a jeweler.....Now, not for the boss to take this in a bad way, but tell him I said "BEAT IT".... I mean the Pca..........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/17/2023 10:36 PM EST

GAdrummer profile image
GAdrummer in reply toj-o-h-n

He is still undetectable. He is losing weight on the new diet. He just finished up physical therapy for his unsteady balance (lingering side effect of years of chemo). The cardiologist will keep a closer eye on the replacement valve.

j-o-h-n profile image
j-o-h-n in reply toGAdrummer

Losing weight - good for him - now for me......I too suffer from a balance issue and use a cane when I walk outside the house. He has to be careful not to fall and hit his head - I did 3 times. I'm seeing a cardiologist in about two weeks to see if I need a valve job.

Are you sure, the Boss is not my Corsican twin (conjoined brothers)..If he looks young and handsome...... then we are. Take care and tell the Boss "knock it off"....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/17/2023 11:25 PM EST

Chris_Ali profile image
Chris_Ali

Hi, thanks for sharing your details. My hubby is on keytruda but so far not encouraging results. May I ask how old your husband is? Thank you.

GAdrummer profile image
GAdrummer in reply toChris_Ali

85

Keytruda produced relatively quick results PSA dropped from 43 to undetectable over 4 months and has remained undetectable for 4 years. He is a super responder which is rare. Most men are not that "lucky". He has paid for that success: adrenal insufficiency, hypothyroidism and ulcerative colitis so far, which have landed him in the local ICU for toxic shock 3 times.

Chris_Ali profile image
Chris_Ali

I read your posts and feel for what you’re going through. It’s so generous of you to share the experience.

GAdrummer profile image
GAdrummer in reply toChris_Ali

This is a great place to share experiences and learn and/or share tips on coping with all the side effects, physical and emotional.

Last year was a particularly trying year for me as a caretaker. The years of effort trying to do everything (working full time, chauffeuring my husband and daughter to multiple doctors, assisting my husband, taking care of house and 2.5 acre yard, singing and playing percussion in local symphony and bands), caught up with me.

When the Salk vaccine first was manufactured, the supplier for the Midwest where I lived did not kill the virus sufficiently. I am a natural red-head from a line known to be susceptible to polio. I got polio from the vaccine and later continue to suffer the post-polio syndrome and scoliosis. Now I have degenerative disc disease that the doctors say cannot be treated because of the severity of the scoliosis. The back pain is a constant that makes a broken finger noticeable only by it's shape.

So this past year I have been making adjustments, cutting back activities, taking more frequent recliner breaks. My daughter decided to move back home. That has only increased my work load. I am overwhelmed by the things she accumulated in 8 years of apartment living filling the garage and overflowing boxes piled everywhere outside her room. Just prior to the move, to make room for her, my sister-in-law packed my clothes in large plastic bins and stacked them up. Now I cannot reach my clothes because the bins are too heavy. Doctor says I'm not to lift 15 lbs. (keep it to 5 lbs. preferably), and my back very much agrees. My husband's strength is less than mine. My daughter is obese and won't help. So I vent occasionally on this website when feeling trapped.

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