Visited Mayo and gained no traction

Posted by jamcousi9 @jamcousi9, Jun 29, 2023

As previously posted, I have gotten pushed back from Mayo on a technicality that they don’t treat EBV not taking into account that the only reason I have EBV is because something in my body is running wild.

After waking up to bloodshot eyes and extreme tinnitus again, I decided to try getting in through the ER in hopes they would actually try and find the root of my issues.

Issues verbally discussed with the doctor are tinnitus 24-7 for over a year, headaches, eye aches, confusion, memory loss, brain fog, extreme fatigue, burning at the back of my cranium and more.

Mayos solution? Blood and urine analysis just to tell me I have high blood pressure and am over producing red blood cells. If you need further help, we suggest you get a referral from your GP. Have a good day.

My GP is going to refer me to an infectious disease specialist in which again, I’ll be denied (unless I pay cash) and Mayo will once again deny me because of my EBV levels (which are 481, almost 454 higher than normal).

So I’m essentially right back to square one again. Issues are getting worse and nobody in the health care world really has an interest in helping.

Further proof that our healthcare system is broken.

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

Becky, Volunteer Mentor | @becsbuddy | Jun 29, 2023

@jamcousi9 Your symptoms sound like those a rheumatologist deals with. Ask your GP for a referral to really good rheumatologist who has knowledge of autoimmune diseases. You may need to go to. Major medical center or university hospital . That is what I had to do. None of the local doctors knew what I had so my husband contacted the university hospital in Denver and they were able to help me.
Does this sound like it could work for you?

SusanEllen66 | @SusanEllen66 | Jun 29, 2023

@jamcousi9 I'm sorry you’re going through this.

A Rheumatologist or Neurologist is exactly who you need. I have similar symptoms and was diagnosed with occipital neuralgia. There is also Polymyalgia Rheumatica. That’s an autoimmune disease.

I hope you can get referred to a specialist asap. I am assuming that your health insurance has what I call a “gatekeeper”, so you can’t just go where and when you need to…

jamcousi9 | @jamcousi9 | Jun 29, 2023

In reply to @SusanEllen66 "@jamcousi9 I'm sorry you’re going through this. A Rheumatologist or Neurologist is exactly who you need...." + (show)

It’s a game changer for sure. I know I have metal poisoning but I can’t seem to get a grab on it. What was your treatment and how are you recovering?

SusanEllen66 | @SusanEllen66 | Jun 30, 2023

In reply to @jamcousi9 "It’s a game changer for sure. I know I have metal poisoning but I can’t seem..." + (show)

@jamcousi9 I have occipital neuralgia. It causes facial pain, scalp soreness, jaw pain, neck pain, and I lost sight temporarily in one eye 3 times.
It’s an inflammation of the nerves under the scalp caused by the misalignment of my neck and spine.
I had physical therapy for it, and it is better now.

Metal poisoning sounds awful. How do you get that?

jamcousi9 | @jamcousi9 | Jun 30, 2023

In reply to @SusanEllen66 "@jamcousi9 I have occipital neuralgia. It causes facial pain, scalp soreness, jaw pain, neck pain, and..." + (show)

That sounds terrible but glad you found the cure. As for my issues, I do not have an answer for that at this time but I am assuming years of plumbing.

hubert | @kuma | Jun 30, 2023

I Systemic Lupus Erythematosus. I have followed the Mayo Clinic for well over a year focusing on Autoimmune Diseases. As someone suffering from one of those diseases for which there is little if not nothing that can be done I easily sense frustration. Please 🙏🏻 keep in mind even the Mayo Clinic is caught in the bureaucratic web of today’s world. Others hav suggested a Rheumatologist and a hospital near you. That’s what I would try. Namaste 🙏🏻

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Jul 1, 2023

@jamcousi9
I’m so sorry that you don’t have any answers yet to help you get better.
At the Mayo ER you mentioned that they found that you are overproducing red blood cells- is that something your GP can continue evaluating? It’s not normal.
When you say you have metal poisoning- do you mean lead poisoning or mercury poisoning?
It’s easy enough to get a lead blood screening. If you have elevated heavy metal levels that could possibly explain some symptoms.

jamcousi9 | @jamcousi9 | Jul 1, 2023

In reply to @astaingegerdm "@jamcousi9 I’m so sorry that you don’t have any answers yet to help you get better...." + (show)

Hi.

To answer the questions, yes I have lead, mercury and aluminum poisoning. I found this out in January and have been treating it however with the numbers coming down, mentally I am feeling worse. My hemoglobin and hematocrit are both slightly elevated but egfr is normal so the doc is assuming it’s my iron intake

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Jul 1, 2023

@jamcousi9
It must be extremely difficult to deal with this. Are you taking medication or IV treatments?
Have you seen a neurologist for your symptoms?

jamcousi9 | @jamcousi9 | Jul 1, 2023

I’ve had better days for sure! I went to a neurologist a couple years ago when it first started and she told me to make an appointment with a sleep specialist. I am going to see if I can get an appointment this week, I am starting to wonder if I have encephalitis moving in as I do have both extremely high EBV levels as well as elevated levels of Coxsackie

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