Childhood Chronic EBV causing a variety of Adulthood Issues

Thank you so much for reaching out! You have great advice.

Although nice, my primary has stated that there is nothing too substantial in my blood work to be of immediate concern. I’m still coughing up green phlegm (since March 17), small quantities and almost constant chest pain.

I did receive a cardiologist referral from my primary after pushing a little bit for one this Tuesday.

I also follow up with the gyno today at 1:30 and still waiting on a call back from the cardiologist referral.

Gynecologist:
Endo Level II and Abnormal Pap,
Pain During Sex, Constant Lower Back Pain and Pressure, Intense Pressure and Lower Stomach Bloating, and Urinary Incontinence (peeing in public 4x in the last year).

Opthamologist:
High Eye Pressure, Jaundice, Sudden Vision Loss, Extreme Dry Eye, Eye Pain Floaters, and Wavy Episodes, Gradually reduced side (peripheral) vision, and
curtain-like shadows over field of vision “feels darkening”, Doc officially found absolutely zero need for glasses or contacts, and no explanation for any of the abnormal issues or close to dissolved retina at 29.

I’ve had high eye pressure since childhood but now my eyes have been yellowing for two months. They have now began to develop lesions within the last few weeks - which all started with an episode of wavy vision and blind spots lasting 4 hours (Opthamologist said Ocular head aches as the diagnosis, even though he said “however, they usually only last 30 minutes max).

Additionally, I had a colonoscopy in 2017 but it was unsuccessful due to improper emptying, I drank the detox 3 days in a row and showed up for the test everyday to be turned away. On the 3rd, doc just said let’s do it anyways.

Of course, there was nothing found. But shouldn’t that be concerning if a 24 year old couldn’t get herself 100% clean after 3 days of colonoscopy drink, when it typically only takes one single day/drink?

“IBS like episodes”, pooping pants on accident just a little, few times a week for about 6 years? Extreme constipation lasting up to 3 weeks, pressure with sharp pains in butt hole. Then sudden urges, straight liquid and have found no resolution for any of it all these years. The cycle just flips back and forth.

Additionally, I have a lump in the left of my buttocks when sitting cross legged. I was told by a doctor was we age fat begins to get in the way there and can move out of the way suddenly .. thing is that this is only on my left side.

My primary, bless her sweet sole, is new to me and since my mom recently passed and she did not know of these issues previously, she is hesitant that stress may be causing the 4 different abnormal cbcs in the last 2 months.

SOOO after a second opinion from an Opthamologist, I won’t know where else to go? I’ll definitely have to try GARD.

If you have any other suggestions - I am 1,000% ears.

**
I know stress does crazy things to our body’s but the swollen lymph nodes in my neck have gone on since college in 2014, ibs like symptoms since 2015, eczema like rashes since 2012, urinary incontinence since 2022, abnormal EKG since childhood, abnormal chest pain since childhood, abnormal Pap smears since 2018, endometriosis since 2019, had nerves in 2022 with no findings but shooting pains in arms, legs, hands, feet (No diabetes or even pre diabetes).

Please share anything or tell other to share if they are in a similar situation, PLEASE.

After my mom passed Jan 2023 , I do not have family to request medical history from and we (little sister and I) know my mom had ovarian cancer and some kind of tumor behind her eye when we were children, she developed diabetes and high blood pressure before dying at 52. She had never discussed death, she thought she would live forever, she always survived any cancer scares and shared very little with either of my sister or I.

Now, we are both panicked. I feel extra on edge just due to having chronic EBV and previous organ failures.

My doctor does not know my family or our history or my childhood so it’s difficult for her to see any underlying connections between all the different symptoms.
**

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Omg, that all sounds so overwhelming and scary. So sorry for all of it. Could the new doctor review your mom's medical records in the name of 'family history' in order to give herself some direction of investigation/testing/treatment for you and your sister? None of what you describe is insignificant.

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Thank you so much for reaching out! You have great advice.

Although nice, my primary has stated that there is nothing too substantial in my blood work to be of immediate concern. I’m still coughing up green phlegm (since March 17), small quantities and almost constant chest pain.

I did receive a cardiologist referral from my primary after pushing a little bit for one this Tuesday.

I also follow up with the gyno today at 1:30 and still waiting on a call back from the cardiologist referral.

Gynecologist:
Endo Level II and Abnormal Pap,
Pain During Sex, Constant Lower Back Pain and Pressure, Intense Pressure and Lower Stomach Bloating, and Urinary Incontinence (peeing in public 4x in the last year).

Opthamologist:
High Eye Pressure, Jaundice, Sudden Vision Loss, Extreme Dry Eye, Eye Pain Floaters, and Wavy Episodes, Gradually reduced side (peripheral) vision, and
curtain-like shadows over field of vision “feels darkening”, Doc officially found absolutely zero need for glasses or contacts, and no explanation for any of the abnormal issues or close to dissolved retina at 29.

I’ve had high eye pressure since childhood but now my eyes have been yellowing for two months. They have now began to develop lesions within the last few weeks - which all started with an episode of wavy vision and blind spots lasting 4 hours (Opthamologist said Ocular head aches as the diagnosis, even though he said “however, they usually only last 30 minutes max).

Additionally, I had a colonoscopy in 2017 but it was unsuccessful due to improper emptying, I drank the detox 3 days in a row and showed up for the test everyday to be turned away. On the 3rd, doc just said let’s do it anyways.

Of course, there was nothing found. But shouldn’t that be concerning if a 24 year old couldn’t get herself 100% clean after 3 days of colonoscopy drink, when it typically only takes one single day/drink?

“IBS like episodes”, pooping pants on accident just a little, few times a week for about 6 years? Extreme constipation lasting up to 3 weeks, pressure with sharp pains in butt hole. Then sudden urges, straight liquid and have found no resolution for any of it all these years. The cycle just flips back and forth.

Additionally, I have a lump in the left of my buttocks when sitting cross legged. I was told by a doctor was we age fat begins to get in the way there and can move out of the way suddenly .. thing is that this is only on my left side.

My primary, bless her sweet sole, is new to me and since my mom recently passed and she did not know of these issues previously, she is hesitant that stress may be causing the 4 different abnormal cbcs in the last 2 months.

SOOO after a second opinion from an Opthamologist, I won’t know where else to go? I’ll definitely have to try GARD.

If you have any other suggestions - I am 1,000% ears.

**
I know stress does crazy things to our body’s but the swollen lymph nodes in my neck have gone on since college in 2014, ibs like symptoms since 2015, eczema like rashes since 2012, urinary incontinence since 2022, abnormal EKG since childhood, abnormal chest pain since childhood, abnormal Pap smears since 2018, endometriosis since 2019, had nerves in 2022 with no findings but shooting pains in arms, legs, hands, feet (No diabetes or even pre diabetes).

Please share anything or tell other to share if they are in a similar situation, PLEASE.

After my mom passed Jan 2023 , I do not have family to request medical history from and we (little sister and I) know my mom had ovarian cancer and some kind of tumor behind her eye when we were children, she developed diabetes and high blood pressure before dying at 52. She had never discussed death, she thought she would live forever, she always survived any cancer scares and shared very little with either of my sister or I.

Now, we are both panicked. I feel extra on edge just due to having chronic EBV and previous organ failures.

My doctor does not know my family or our history or my childhood so it’s difficult for her to see any underlying connections between all the different symptoms.
**

Jump to this post

Thank you so much for reaching out! You have great advice.

Although nice, my primary has stated that there is nothing too substantial in my blood work to be of immediate concern. I’m still coughing up green phlegm (since March 17), small quantities and almost constant chest pain.

I did receive a cardiologist referral from my primary after pushing a little bit for one this Tuesday.

I also follow up with the gyno today at 1:30 and still waiting on a call back from the cardiologist referral.

Gynecologist:
Endo Level II and Abnormal Pap,
Pain During Sex, Constant Lower Back Pain and Pressure, Intense Pressure and Lower Stomach Bloating, and Urinary Incontinence (peeing in public 4x in the last year).

Opthamologist:
High Eye Pressure, Jaundice, Sudden Vision Loss, Extreme Dry Eye, Eye Pain Floaters, and Wavy Episodes, Gradually reduced side (peripheral) vision, and
curtain-like shadows over field of vision “feels darkening”, Doc officially found absolutely zero need for glasses or contacts, and no explanation for any of the abnormal issues or close to dissolved retina at 29.

I’ve had high eye pressure since childhood but now my eyes have been yellowing for two months. They have now began to develop lesions within the last few weeks - which all started with an episode of wavy vision and blind spots lasting 4 hours (Opthamologist said Ocular head aches as the diagnosis, even though he said “however, they usually only last 30 minutes max).

Additionally, I had a colonoscopy in 2017 but it was unsuccessful due to improper emptying, I drank the detox 3 days in a row and showed up for the test everyday to be turned away. On the 3rd, doc just said let’s do it anyways.

Of course, there was nothing found. But shouldn’t that be concerning if a 24 year old couldn’t get herself 100% clean after 3 days of colonoscopy drink, when it typically only takes one single day/drink?

“IBS like episodes”, pooping pants on accident just a little, few times a week for about 6 years? Extreme constipation lasting up to 3 weeks, pressure with sharp pains in butt hole. Then sudden urges, straight liquid and have found no resolution for any of it all these years. The cycle just flips back and forth.

Additionally, I have a lump in the left of my buttocks when sitting cross legged. I was told by a doctor was we age fat begins to get in the way there and can move out of the way suddenly .. thing is that this is only on my left side.

My primary, bless her sweet sole, is new to me and since my mom recently passed and she did not know of these issues previously, she is hesitant that stress may be causing the 4 different abnormal cbcs in the last 2 months.

SOOO after a second opinion from an Opthamologist, I won’t know where else to go? I’ll definitely have to try GARD.

If you have any other suggestions - I am 1,000% ears.

**
I know stress does crazy things to our body’s but the swollen lymph nodes in my neck have gone on since college in 2014, ibs like symptoms since 2015, eczema like rashes since 2012, urinary incontinence since 2022, abnormal EKG since childhood, abnormal chest pain since childhood, abnormal Pap smears since 2018, endometriosis since 2019, had nerves in 2022 with no findings but shooting pains in arms, legs, hands, feet (No diabetes or even pre diabetes).

Please share anything or tell other to share if they are in a similar situation, PLEASE.

After my mom passed Jan 2023 , I do not have family to request medical history from and we (little sister and I) know my mom had ovarian cancer and some kind of tumor behind her eye when we were children, she developed diabetes and high blood pressure before dying at 52. She had never discussed death, she thought she would live forever, she always survived any cancer scares and shared very little with either of my sister or I.

Now, we are both panicked. I feel extra on edge just due to having chronic EBV and previous organ failures.

My doctor does not know my family or our history or my childhood so it’s difficult for her to see any underlying connections between all the different symptoms.
**

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@briannalenaemiller23 You have so much going on and you’re doing everything possible. I’m glad you're going to see the gyn today—that’s a good start. Write down any and all questions you may have for her (you can even give her a copy when you first walk in). And make a list of symptoms and things that are bothering you. Write down her answers! And don’t let a male physician brush you off! You are going to be serious and advocate for yourself! Of course, now that I think of it, my note is probably too late for your visit!
Can you think of any large medical centers or university hospital in your area. See if one of them has an infectious disease doctor that you can make an appointment with.
Do you have a friend that you trust who might accompany you on doctor visits. It’s always good to have two sets of ears and lets the doctor know that you’re serious

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