Undiagnosed need help!

Posted by nicosuave @nicosuave, Feb 8, 2022

Hi everyone thought I’d jump on and pray for a miracle that someone might be able to help me. It all started 5 months ago when I went camping. I went camping in Colorado for a full week with my whole family. Not sure if this is why I’m sick but I did a couple stupid things while I was up there. I was around lots of bugs, I drank the river water and ate wild mushrooms on the last day. After that I got extremely ill and have been ever since. I have been puking and pooping blood, my skin burns and I have paresthesias, I am dizzy constantly, off balance and have visual problems. I have been like this every day since then and it has been horrendous to say the least. I am mostly bedridden and have lost pretty much my entire life to this. I have had many tests done and doctors can not figure out what’s wrong. I’ve been to the emergency room many times and admitted to the hospital 3 times. Had tons of tests and almost everything has come back normal except for a mildly elevated white blood cell count and some nutrient deficiencies here and there and positive gi bleed but they can’t find the source of it. I’ve had several mris, colonoscopy, endoscopy, ct scans, eye exam and a couple other things. If anyone has any ideas or could point me in the right direction I would love and appreciate any help please! Thank you!

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John, Volunteer Mentor | @johnbishop | Feb 9, 2022

Hello @nicosuave, Welcome to Connect. I know it has to be really frightening and difficult not knowing what is going on after seeing different doctors, having many tests, hospital trips and still no answsers. I'm sure you shared that you drank river water and ate wild mushrooms with your doctors. I'm not a doctor and have no medical training but it seems like some of your symptoms line up with mushroom poisoning syndrome. Here's some information that describes it better - https://namyco.org/mushroom_poisoning_syndromes.php

Have you considered seeking help at a major teaching hospital or health facility like Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

joannemm34293 | @joannemm30809 | Feb 9, 2022

I had same issues. A gastro Dr came into ER AND REQUESTED a test for Giardia. Came back positive.

nicosuave | @nicosuave | Feb 9, 2022

In reply to @johnbishop "Hello @nicosuave, Welcome to Connect. I know it has to be really frightening and difficult not..." + (show)

Thank you so much for the reply? I appreciate your help I will try to seek help at a teaching hospital.

nicosuave | @nicosuave | Feb 9, 2022

In reply to @joannemm30809 "I had same issues. A gastro Dr came into ER AND REQUESTED a test for Giardia...." + (show)

That’s interesting! Can you really have giardia for 5 months that causes neurological problems? Thank you for the reply! It means the world!

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 9, 2022

It can be Giardia as well as other parasites found in fresh water. They should have tested your stool for bacteria and parasites- and re- tested.
You could also have a combination of mushroom toxicity and parasites found in fresh water streams.
Your best chance for a diagnosis and treatment is contacting either Mayo or another large university hospital as soon as possible.

bp6596 | @bp6596 | Feb 9, 2022

I am not a doctor but have you been tested for Lyme Disease yet?

nicosuave | @nicosuave | Feb 9, 2022

In reply to @astaingegerdm "It can be Giardia as well as other parasites found in fresh water. They should have..." + (show)

Thank you so much for the reply! I’ve just been to so many hospitals and nobody can find out what’s wrong and they don’t seem to care about my history that brought this on. I don’t know what hospital to go to when all of them just send me home. I did have one ova and parasite stool sample done at my gp but it was negative.

nicosuave | @nicosuave | Feb 9, 2022

In reply to @bp6596 "I am not a doctor but have you been tested for Lyme Disease yet?" + (show)

Thank you for your help! I did get one Lyme test from my gp a few months ago but it was negative however I’m not really sure how accurate the test was.

joannemm34293 | @joannemm30809 | Feb 9, 2022

In reply to @nicosuave "That’s interesting! Can you really have giardia for 5 months that causes neurological problems? Thank you..." + (show)

I had off and on symptoms for several months. The first time I wound up in the ER the doctors could not figure it out and sent me home and then I went downhill again 3 months later and went back in the ER and that's when a gastro Dr got involved and he requested a test for Giardia and it came back positive. Many people who get Giardia were camping recently or drank from a river or creek. After several months of feeling very sick and finally being diagnosed with Giardia it took one month++ of strong antibiotics to get better

nicosuave | @nicosuave | Feb 9, 2022

In reply to @joannemm30809 "I had off and on symptoms for several months. The first time I wound up in..." + (show)

Thank you! I’m definitely going to get checked for giardia and if im negative then at least I can rule out one more thing! I appreciate your input and your help thank you for caring! I have two little kids and a wife who need their daddy and husband back!