I'm 29, 4/4, w/ Lyme and Scleroderma

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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AnnieP
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I'm 29, 4/4, w/ Lyme and Scleroderma

Post by AnnieP »

Hi there everyone!

I'm beyond thrilled to find that such a forum exists with other 4/4s and 3/4s! Haha, I know most people probably come to this forum terrified but I've known about my gene for awhile now and have a very knowledgable doc who follows Dr. Gundry's work (it looks like there is a split in the group between who follows his advice and some who believe its hogwash - I respect all opinions though and can't wait to learn more from all of you!)

A little more about me...

I'm 29 years old, married and have 2 little ones (they are 7 and 2). I was a graphic artist at a marketing firm until I had my last sweet baby and decided to stay home. Unfortunately, I had some traumas happen right after that sparked some immune issues. After going through the ringer with different rheumatologists and PCPs - I found one that helped me figure out what was going on. She is a Functional Medicine Doctor and one of her first tests happens to be the ApoE. She told me she can't figure out why people don't do these tests as routine when we're born ;)

Being so inflammed with autoimmune disease is less than ideal with the 4/4 gene... from what I understand, detoxing is not our strong suite! I had a bullseye rash about 7 years ago - had the typical muscle aches, pains, fever, etc and my PCP just said "Ohhh that bite looks BAD!" and when I asked her what it was she just shook her head and said "Oh, yeah sorry, we'll never know." 2 weeks worth of antibiotics and supposedly I would be good... I believed it, I knew nothing of Lyme! 7 years later of bad diets, excessive work stress, bad sleeping, little exercise, and two trauma's - BOOM. Hello Scleroderma!

I learned about my 4/4 gene, Sclero, and Lyme (with Mycoplasma and Rickettsia) all within the same 2 weeks. I can't begin to explain the agony that I felt and hopelessness that plagued me for the next few months. It was like "Why bother? I'm doomed from every angle and I'm only 29!"

Fast forward a year later and my attitude has totally changed. I accept that life looks a bit different than I pictured and instead of being negative and down about it, I look for the blessings in every situation, in everyday things. I don't keep putting things off for the future. I'm here NOW and try to be as present as possible with my family. I've changed the way I cook for my family - I mean hey, my kids have atleast HALF of my genes so they need to be on board, too ;) Easier said than done... but we try. We laugh, we try to be active (on my good days), and don't dwell on the negatives. We have downtime, we meditate, we pray, and we keep a smile on our face. Life is hard, but everyone has "stuff", right?

I'm truly looking forward to learning as much as I can here from other people who have my genes! I've been searching for gene twins for the past year and can't believe I didn't come across this site sooner. Thanks guys :)
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SusanJ
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Re: I'm 29, 4/4, w/ Lyme and Scleroderma

Post by SusanJ »

Hi Annie, and welcome to the forum. So hard to be facing so many health issues at a young age.

You might want to use the search engine on the site and look for our discussions about CIRS - chronic inflammatory response syndrome. Given you had Lyme and now fighting scleroderma, you might find some new information that applies to your situation.

And ask away as you poke around the site. We always recommend reading our primer as the best place to start. viewtopic.php?f=33&t=1418
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Re: I'm 29, 4/4, w/ Lyme and Scleroderma

Post by Starfish77 »

Hello AnnieP, I'm delighted you are looking for gene twins. I think I'm well qualified with my two Apoe4 genes. I'm not quite three times your age but I will be in ten years. I had an autoimmune disease also, sarcoidosis when I was 60. After being treated for two bouts, I went into remission six years later. I've improved my health a lot since I joined the group over three years ago. My doctor said this year I had the best bloodwork numbers since I've been seeing her for ten years. You sound like you have an excellent attitude about dealing with less than pleasant news. One advantage of having several health crisises is that we realize we made it throught the last one, we can probably do it again. You sound as if you have a great attitude and will make a fine new member.
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Re: I'm 29, 4/4, w/ Lyme and Scleroderma

Post by JML »

Welcome to the site AnnieP! Your attitude is inspiring!
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Re: I'm 29, 4/4, w/ Lyme and Scleroderma

Post by floramaria »

Hello, AnnieP. Welcome! You've made such a powerful change from your very understandably hopeless feelings when you were hit with so much difficult news about your health to your positive attitude and actions today. Impressive! Your being able to take such a positive approach to making changes needed to support your health and your family's health will definitely serve you well. It is great that you have a good doctor and that you found this website, which offers such a wealth of information and also a supportive community. That is an interesting point your doctor made on testing for ApoE4 at birth which would give the opportunity to intervene throughout life. My guess is that the dietary changes you are making to build your health and reduce inflammation will be very protective in the health of your kids. How do you like the Gundry diet? Are you finding it beneficial?
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Re: I'm 29, 4/4, w/ Lyme and Scleroderma

Post by jolicoeur »

Welcome AnnieP. You are on the good 'tracks'. I'm impressed with your beautiful attitude. You seem to have a good sense of humour. And meditate and be grateful have a profound impact on our physiology. Having a functional medicine doctor is great. This is awesome. As SusanJ proposed, the 'primer' is a real good place to start. You'll find answers to many questions. And we're there to support you. Welcome again and keep smiling !!!! Lucie
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Re: I'm 29, 4/4, w/ Lyme and Scleroderma

Post by Jan »

Welcome, Annie! I see character strengths of humor and love of learning right off the bat, not to mention persistence. We are delighted you have appeared!
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