My Father's Mystery Illness

Posted by babyy22 @babyy22, Jan 24 1:29am

One of the hardest things to deal with in life is never having answers. Going through the never-ending cycle of doctors not knowing; I'm reaching out for help. My father (53) has been struggling with a mysterious illness over the last 20 years. This illness has triggered, or "flared up," at 3 identifiable points in time.

First, in 1999, my father first noticed symptoms such as sore and swollen lymph nodes in his neck, followed by fevers. He was emitted to the hospital and stayed for about 3 weeks until he made a recovery while being treated. What the treatment was or how symptoms subsided is unknown.

The next occurrence was in 2007, 8 years later. The first symptoms were the same as in 1999, including sore and swollen lymph nodes in his neck, followed by fevers. This time, he suffered from this illness for 2-3 months. After countless doctors, continuously searching for help, he found an Infectious Disease Specialist (ID) who was able to help him. The ID ended up giving him a 10-day prescription for Penicillin, ultimately curing his symptoms entirely.

In November of 2022, it came back. The symptoms were the same. He got a 5-day prescription for Azithromycin (Z-Pak), which almost cured him fully. However, he ended up “relapsing” and regaining symptoms 6 days after they wore off.

During November, his lymph nodes were swollen. First, his lymph nodes were swollen in his armpit. Later, the soreness and swelling traveled to the side of his neck.

A very important thing to mention is that all of these "flare-ups" are triggered by stressful events, happening at immense peaks of stress (stress-induced).

As of currently (January 2023), he has had sore and swollen lymph nodes, chills, extreme weight loss (from 190-166), loss of appetite, mild fevers, light sensitivity in eyes, sore & sensitive eyes, physical weakness, and fatigue.

Some of his blood work is showing low white & red blood cell counts, inflammation in his blood, and mild blood count in his urine. Although, the mild blood count in his urine is assumed to be from the Azithromycin prescription in November.

The biggest mystery in all of this is that antibiotics have been used to treat the symptoms. While these symptoms resemble those of viral infections, my father has tested negative for multiple bacterial infections. Yet, antibiotics are curing his symptoms. I have speculated that this illness could be an autoimmune disease because symptoms have come back every 8-15 years. My goal in writing this is to hopefully gather ideas as to what this could be, and find a way to help him. Below are his current prescriptions and medical history. Please if anyone can help us in any way, we'd greatly appreciate it. Thank you.

Current Medications:
Hydrochlorothiazide
Amlodipine
Atorvastatin (Lipitor)

Medical History (his parents' medical history not fully known):
High blood pressure
Prediabetic
High cholesterol

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Hello @babyy22, Welcome to Connect. I know it's especially difficult not being able to get answers when you are trying to help a loved one. Thank you for doing such a good job of documenting your father's struggle with his condition. I think this is really important and can be helpful when working with many different doctors over the years.

I'm sure you've done lots of research already in your search for answers. I thought I would share a couple of references in case you haven't seen them while we wait for other members who may have experience to respond.

"Swollen lymph glands are usually a sign of infection and tend to go down when you recover. However, they can sometimes have a more serious cause and may …"
— Swollen glands – Illnesses and conditions – NHS inform:
https://www.nhsinform.scot/illnesses-and-conditions/glands/swollen-glands.
— Can Stress Cause Swollen Lymph Nodes?:
https://www.verywellhealth.com/can-stress-cause-swollen-lymph-nodes-5271651.
I know your father has seen many doctors and specialists over the years. Have you considered seeking help at a teaching hospital or major health facility like Mayo Clinic where a multidisciplanary teamwork approach is used for diagnosing and treating a patient?

REPLY

I’m sorry to hear about your dad. Has he been seen by a Rheumatologist?
In my opinion, and with my own experience with autoimmune diseases, I think he would benefit from working with a Rheumatologist.
Best wishes
Susan

REPLY
@johnbishop

Hello @babyy22, Welcome to Connect. I know it's especially difficult not being able to get answers when you are trying to help a loved one. Thank you for doing such a good job of documenting your father's struggle with his condition. I think this is really important and can be helpful when working with many different doctors over the years.

I'm sure you've done lots of research already in your search for answers. I thought I would share a couple of references in case you haven't seen them while we wait for other members who may have experience to respond.

"Swollen lymph glands are usually a sign of infection and tend to go down when you recover. However, they can sometimes have a more serious cause and may …"
— Swollen glands – Illnesses and conditions – NHS inform:
https://www.nhsinform.scot/illnesses-and-conditions/glands/swollen-glands.
— Can Stress Cause Swollen Lymph Nodes?:
https://www.verywellhealth.com/can-stress-cause-swollen-lymph-nodes-5271651.
I know your father has seen many doctors and specialists over the years. Have you considered seeking help at a teaching hospital or major health facility like Mayo Clinic where a multidisciplanary teamwork approach is used for diagnosing and treating a patient?

Jump to this post

Hi John,

Thank you for the helpful articles. I have not looked into Mayo Clinic. Currently we are with UCLA Health, based in Los Angeles. If you know any facilities in the area please let me know.

REPLY
@SusanEllen66

I’m sorry to hear about your dad. Has he been seen by a Rheumatologist?
In my opinion, and with my own experience with autoimmune diseases, I think he would benefit from working with a Rheumatologist.
Best wishes
Susan

Jump to this post

Hi Susan,

Thank you for your response. As of currently he has only seen an Oncologist, who ultimately didn’t test him for anything because he felt just based off of symptoms and story that he doesn’t have cancer. Saying, “cancer would come and go every 8-15 years.” He also has seen an Infectious Disease Specialist who ran a lot of tests on him but nothing that gives us an answer. I will look into that and let him know. Thank you!

REPLY
@babyy22

Hi Susan,

Thank you for your response. As of currently he has only seen an Oncologist, who ultimately didn’t test him for anything because he felt just based off of symptoms and story that he doesn’t have cancer. Saying, “cancer would come and go every 8-15 years.” He also has seen an Infectious Disease Specialist who ran a lot of tests on him but nothing that gives us an answer. I will look into that and let him know. Thank you!

Jump to this post

You’re welcome!
A Rheumatologist treats all kinds of diseases and situations. It may take a while before you find one who figures things out but with patience and perseverance your dad will get the help he needs.

REPLY
@babyy22

Hi John,

Thank you for the helpful articles. I have not looked into Mayo Clinic. Currently we are with UCLA Health, based in Los Angeles. If you know any facilities in the area please let me know.

Jump to this post

There is a Mayo Clinic Care Network member in Southern California that might be a good option — First California Member of the Mayo Clinic Care Network: https://newsnetwork.mayoclinic.org/discussion/first-california-member-of-the-mayo-clinic-care-network/

REPLY
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