I’m ApoE4/E4

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
SherylT
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I’m ApoE4/E4

Postby SherylT » Tue Jan 05, 2021 10:18 pm

Hi I’m new to this site. I found out I’m Apo E4/E4 this last month. I’m not sure yet how to navigate thru this site not sure exactly but here it goes:
In 1992 I had an auto accident TBI closed head / seizures for 10 yrs then went 15 yrs seizure free
Last 5 years now I’ve been having health problems. Started out with the life sucked out of me so fatigue but couldn’t place what was wrong just kept going trying to get things a accomplished.
Went to rheumatologist. Diagnosed Raynauds she thought I might have sceloderma, sjogrens but she said test didn’t show what it was yet but whatever I had she couldn’t cure but she could help manage but in time it would show in test. Whatever I had. Drs thought maybe MS guess time would tell. Cardiologist said sounds like ms
My symptoms I had was extreme fatigue, then gall bladder went bad in 3 weeks after an endoscopy to see why I was having swallowing problems. I hadn’t ever had any issues before with my gall bladder went to 5 % to 0% quick had surgery. After surgery I continued to have severe pains in abdomen / spasms. I then started to have chest pains, tachycardia & palpitations. From there cognitive, comprehension, dizziness, double vision. Squeezing around my chest & abdomen area feels like a vice grip squeezing so hard
After many test many prayers I was referred to Dr Corbier’s, to a neurologist & internist that were functional. They tested me with Evox neuro test, results showed my brain was on fire autoimmune encephalitis I never had heard about this. This began my journey to start getting some answers and help. I had went out of state to see Dr Corbier’s in SC. My cousins wife worked for the drs. She had been down to my house for a funeral saw how I was doing talked to drs Corbier’s and had me come up for. an evaluation they were so kind to me, tested me that day for no charge, set me up in a hotel so I had a place to stay so I could start to get some Answers. I hope I never forget how kind these Dr were to me. I was referred to a lady who had a Bemer mat near where I live to help my circulation & oxygen throughout body and brain. They say I don’t get the proper amount. She referred me to Dr C Davis, Sarasota. which is a preventative cardiologist/ internist/ functional. He was a conventional cardiologist internist. He began to do test.
He did lab work started me on iv therapy. Trying to build me up
Neural Zoomer test some results were
(IgG + IgA)
Blood Brain Barrier Disruption Anti-s100b
Moderate Demyelination Antigens
Anti-Glial fibrillary acidic protein
(IgG + IgA)
Brain Autoimmunity Anti-RAGE
peptide Anti-Endothelin A receptor
Started me on A brain peptide injection, supplements & iv therapy. My vagus nerve, autonomic nervous system parasympathetic & sympathetic, CNS was not working properly.
Started treating me w/ vagal nerve stimulator. Sent me to get hyperbaric ozone treatment for black mold & mercury levels. ozone treatment from Gabriel Wellness Center which referred me to a functional dentist in Tampa. Had jaw bone infection / cavatations maybe from my black out fall who knows. Infection not in my teeth only in jaw bone. Had also sinus infection, bladder infection that went to my kidneys all at the same time. I had went for a third trip to ER in the last few yrs for heart. Had episode after cath lab during night so much pain like every nerve ending was in pain, vitals & heart was going all over the place, so much chest pain and pressure in chest. All of a sudden I realized They had the crash cart & team there if needed but they got things calmed down. Where do all those nurses and drs come from so quick. Why don’t I remember them coming in
I was then treated by Dr Alicea in Tampa an oral surgeon who sent me to Dr Garcia In Oldsmar, Florida which started iv treatment, Hbot therapy, 5 rounds antibiotics. Infections kept coming back. My immune system had been compromised.
Dr Garcia started Treating me for High cortisol levels. Put me on Candida diet for yeast and Inflammation through out my body, started me on licorice root extract & ps capsules I can’t spell or pronounce that one.
My seizures started back up getting auras I never had before. My vision seeing like looking through a fish bowl and like spinning in a circular motion so weird. Double vision, vertigo come & go, trigeminal nerve which is horrific pain comes & go Also. Liver, bowels and colon acting up. I continued treatment finally my mind felt I had some clarity more than I had in a while. Not as hard to try to think to process things or to try to function. To ride in a car I would have to lay flat close my eyes for some reason riding in car trigger seizure activity, vertigo vision problems nauseating, things go too fast fir my brain to keep up. Realizing my reaction to decision making was not right I had given up driving once again but as I ride in a car my thinking process was so slow I knew I wouldn’t be able to know which way I would of went. I realized a lane I thought was a lane was not a lane but if I was driving I would of sworn it was a legal lane. Realizing I was def should not drive.
I have episodes where I start to go numb in feet works up the legs to body, arms then head, vision loss goes a gray white so numb my husband helps me to lay down I opened my eyes but couldn’t move none of my body except to open eyes my vision is back but I can’t move guess I passed out again wake up not able to move them third time I could finally move
The first time woke up feeling bad woke up on bathroom floor, loss control bladder/ bowels started throwing up tried to stand up but couldn’t use my legs arms to weak to pull myself up was there 2 1/2 hrs till I could pull up off floor so weak tired this concerns me that one day I might be a prisoner of my own body like my mom was. I called it a concrete disease. She was so stiff like concrete all that could move was her eyes the only thing that show if she was excited or scared. She was a prisoner of her own body. Till failure to thrive kick in
Had times where I’m sitting on chase on sofa eyes start blinking open & shut then extreme tiredness hits me I wake up to go to bathroom walking funny I had loss control of bowels had been out awhile I was in so much pain. Confused I didn’t even know why I didn’t know I had loss control of my body functions. Random black outs /falls one which knocked a bridge right out of my mouth & broke another crown in my mouth. I will fall straight down no warning wake up on ground. Wake up with static vision after a seizure or maybe it’s during one. Chest pains, ischemic heart & brain small blood vessel disease, tachycardia, my heart goes over 250 bpm or drop as low as 29 bpm bradycardia, or goes normal. Right now my heart is calmer than it had been I’m All over the place. palpitations, nerve pain, electrical shock, numbness, weakness, swallowing problems, choking, bladder incontinence - weakness -damaged , hot flushed spells sweats nauseating feeling weak and so bad then passes or during it my feet legs will feel frozen to the bone like in a walk in freezer. I can wake up sitting up faster than I ever had sat up gasping for a breath of air, feeling like something scary. Sometimes I can hear feel my heart go baboom so loud like if flips. Wakes me out of a sleep. I now have a looo recorder in chest if I can remember to push the button
Went back to Dr C Davis, he ordered Genovations genomic results showed I was ApoE4/E4 / C677T/A1298C, V158M, 308GA, they say I can’t fight inflammation & have low immune system. I’ve been prediabetic a few yrs now. But since diet i believe my sugar levels were normal this time.
Genova diagnostic metabolomix ordered by Dr Davis some of my results showed my mitochondria wasn’t working, & other health issues. , all the levels that were not normal this gave them something to work with. Neurologist says this explains why so many white spots on my mri brain scans. They recommend I start the Bredesen protocol diet, they started me on iv supplements treatment, treating me with supplements making sure I’m getting the proper amount then retesting me in 3 months to see if I’m retaining anything. Waiting for a eeg In home test to see if they can catch seizure activity.
Diet now added no coconut oil or milk, hardly no eggs, no grains, no sugar, no gluten, no dairy just chicken fish green beans, broccoli , cabbage, asparagus, lettuce, cauliflower, spinach, rarely an egg no coconut milk only almond milk and use olive oil or avocado oil.
I’m down from size 10 was heading to a 12 but down to size 4. will begin the bredesen protocol diet not sure if I’m almost on it already or not. I believe that diet is helping me.
Referred by Dr Garcia to go to Dr Pierce St. Petersburg Florida an Advanced Orthogonalist. my atlas & axis are not holding causing extreme pressure on brain stem when it’s not holding my seizure increase, pain increases, electrical shock in leg, feet, neck back increases pain in legs and back increases, vertigo & vision prob increase heart acts up more also. My atlas & axis not holding alignment then It held for a month but has twice since came out recently. Still giving me fits. But I can really tell when it’s went out everything gets worse
My ekg show sometimes what can cause a stroke or abnormal rhythm at times . I had abnormal chemical stress test
My legs have started increasing in pain, very tight not relaxing spasms numbness and feeling like they are asleep my back and neck pain increases too
Each step of the way I get bits and PCs of my puzzle, answers to what is going on. I begin to research with the results of each test to help to understand , to see how I can help myself to fight whatever is going.
My mom she had Parkinson’s/ levy bodies she has passed. They are watching my signs to see if I’m lewey bodies like mom. My dad also passed this year strokes for 5 yrs. Heart disease runs in family along w/ high cholesterol & cancer. High blood pressure, grandma died of brain Anurysm. Loss my sister to cancer 3 weeks after Dad passed of strokes for 5 yrs. Brother diagnosed w/cancer but prayer , surgery & diet radiation he is doing well. so family history I thought wasn’t that bad till recently things got crazy.
I’m awaiting test results, my 3 drs had conference talk awaiting to see what is next plan. I downloaded Dr Bredesen newest book which lead me to this site. I’m hoping to find lots of info to help me but hoping I can help someone else too if I can. I’m complicated, not the norm some drs look at me there’s no way this could all be happening, other drs says I’m complicated they believe me but they just don’t know what to do. some symptoms comes & goes some increases then decreases and comes back strong at times. I feel I have flare ups and at times I have went into remission.
I have recently flooded my kitchen multiple times, fire in kitchen, burning food, forgetting things in Oven/microwave. Forget what I was talking about, can’t think of word to describe what I want to say. Start something walk away forget I’m doing it or I might be on phone I’m taking then realize oh I was on phone. At one point my walking was so slow I was so weak. I don’t always understand what people say other times I do. When it works I think I’m not brain dead give me credit. But everyday I’m thankful. I might get something back or it improves or it may get worse and decline but I give thanks to the Lord. He’s guiding me through this. I believe being on this diet taking proper supplements, having the Drs who don’t give up research, looking for answers. Not relying on the standard norm test. Willing to go the extra mile for you. Having Faith in God. It’s comforting. I’m thankful to find a team of Drs that in the last year I feel I’m finally getting some answers. to help me. My primary dr said the functional dr and treatment ive been receiving seem to be helping some I said yes. He has been so supportive through this. Knowing who to go to or where to find the right dr is challenging
If anyone has any good advice I’ll welcome all. I read all the different stories. my prayers to all for restored health. Hope to figure out the site so I can learn all you have to offer. Thank you, SRT

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lgoring
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Re: I’m ApoE4/E4

Postby lgoring » Thu Jan 07, 2021 5:55 pm

SherylT wrote:Hi I’m new to this site. I found out I’m Apo E4/E4 this last month. I’m not sure yet how to navigate thru this site not sure exactly
I downloaded Dr Bredesen newest book which lead me to this site. I’m hoping to find lots of info to help me but hoping I can help someone else too if I can.
I’m thankful to find a team of Drs that in the last year I feel I’m finally getting some answers. to help me. My primary dr said the functional dr and treatment ive been receiving seem to be helping some I said yes. He has been so supportive through this. Knowing who to go to or where to find the right dr is challenging
If anyone has any good advice I’ll welcome all. I read all the different stories. my prayers to all for restored health. Hope to figure out the site so I can learn all you have to offer. Thank you, SRT


Hello and welcome SherylT!

You have had quite the journey and I am happy to see that you are hopeful for your journey ahead. I found out that I was an E4/E4 in my mid 20's and I worked with my primary care provider on a holistic plan that I try to stick to daily - supplements, food, exercise, stress management - but I am definitely an amateur being so young. Luckily, there are many individuals on this site that will be able to help you out. One place to start to learn how to navigate the site is the How-To Guide. This guide is a great resource I found helpful when I started posting. It includes topics such as navigating the forum, private messaging, and searching. One great tip is using the quote button (") when replying to a post. Using this button will automatically alert the member of your response. It really helps keep the conversation rolling.

You may also enjoy the Primer. This was posted by a physician where she introduces the ApoE4 gene and possible prevention strategies. You may find this interesting if you haven't found it already.

I hope these little tidbits help you with navigating the site and if you have any questions about responding on the site please let me know!

See you around the forum,

lgoring
ApoE4/4
Certified Health Education Specialist
Functional Medicine Certified Health Coach

SherylT
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Re: I’m ApoE4/E4

Postby SherylT » Sun Jan 10, 2021 9:38 am

Thank you for all the suggestions. I really appreciate it.

Morazan
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Re: I’m ApoE4/E4

Postby Morazan » Mon Jan 11, 2021 1:21 am

Hi Sheryl, nice to meet you. I’m new too, or at least I don’t stop by very often. You will find a lot of people here who are expert at blood markers and diets. I hope you have a support system and someone checking in on you. I have found it useful to buy outlet timers so I things like irons will get turned off automatically. I prep lots of food for the freezer and mostly use the microwave. Also, I put labels on everything — light switches, sock drawer, TV remote, office supplies, etc. Even while we exercise and eat well, we also need to prepare a livable environment for our future selves. Nobody else can do it the way we want it to be. And on that somber note, I welcome you, wish you a lovely week ahead. 🙂

SherylT
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Re: I’m ApoE4/E4

Postby SherylT » Mon Jan 11, 2021 8:47 am

Thank you all the tips help Anything that helps to keep us functioning is a plus. May you have a Blessed week also.


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