Undiagnosed need help!

All of this history makes me wonder - are you seeking all of your care through going to the ER and being admitted to the hospital? If so, is it the same place every time?
While it may seem like a good idea, intake through an ER often leads to treatment of the "presenting symptom" - whatever is worst when you are admitted, instead of a comprehensive health history and complete diagnosis.
Do you have a clinic and primary care doc, one place where all reports are being accumulated and analyzed?
Given the length of time this has been going on, it seems like it is certainly time to seek a major research and teaching hospital, or at least an Infectious Disease specialist, as others here have suggested.

You raised another question too, about getting a systemic fungal infection from eating mushrooms. This has not been known to happen. BUT there are plenty of poisonous mushrooms out there, which contain neurotoxin and other chemicals that can harm you. Many look similar to their edible cousins, which is why mycologists tell amateurs "If in doubt, throw it out! Do you have any idea what mushroom(s) you ate?

Sue

Hi thank you for responding to my comment!
I am not seeking all of my care through the hospital and I have been to several different ones. I do have a primary doctor that I see every couple weeks and she has referred me to a couple specialists and said this is out of her hands and there is nothing more she can do for me. She also said that she won’t refer me to an infectious disease doctor because they will not accept my referral if I haven’t tested positive for Lyme, infection, etc. beforehand. I have been referred to a gastroenterologist and a neurologist who took months to get an appointment with and have not been able to identify the cause of my health condition. They each order one test at each of my appointments then I have to wait another 4-6 weeks to see them again. I would love to see an infectious disease doctor and that was the first thing I asked for 5 months ago but my primary care doctor has informed me that if she makes a referral they will just deny it so there is no point. As far as the mushroom I ate I know that it was small and brown however I have no idea what kind it was and what different toxins could have been in it that would stay in my system for 5 months. I am certain though that this is not a coincidence and I have been severely ill every day since that happened. Also thank you so much for your input and knowledge you have asked me more about my health condition and the history behind it than any other doctor has and it means a lot!

Usually ova and parasite test are ordered in a set of 3 different collections. Did they do bacterial cultures?
I think that there has to be a bigger effort trying to find the origin of the GI bleed.
I don’t know if it’s possible, but go to Mayo!

Hey! Thanks for your advice and knowledge it is much appreciated! They definitely did not do 3 different collections and they have run no blood cultures because my doctor said I don’t have a fever. I also have been adamant that passing large amounts of blood that the doctors have seen for themselves and not being able to locate the bleed is not good enough but they said they will continue to investigate however they have not found it’s source as of now. I would absolutely love to go to Mayo Clinic but I am out of state and on Medicaid so if I go to Mayo Clinic I think I will have to pay out of pocket for everything.

Do you have a University Medical Center in your state? They usually have the best specialists.
Also, check with the Medicaid office where else you can get a second opinion. Don’t give up!
Is there someone who can help your search?

While I did not have your symptoms, I can commiserate with you on not knowing what's wrong, @nicosuave.

And, not knowing anything about your insurance or your sexual status, you can tell your internist that giardia *is infectious* to other humans and there is H2H transmission. So, if you are around a child or with a sexual partner, you can infect another human - no matter how clean you are.* So it can be considered infectious.

A giardia test should be a quick turn around(~3 days-ish).** Good luck and hope for the best for you.

*This is in no way a statement about cleanliness; teeny microscopic bits of infection are passed even with all our handwashing these days, as we all know.
**This from my personal giardia testing - potential infection from tainted water/food overseas.

Thank you! Yes we have a university hospital here and I went to the Er there and they sent me home because my vitals were stable. I don’t know how to get into a university hospital or a teaching hospital when everywhere I go they just send me home?

Thank you! I will make sure that I am tested for giardia!

The ER usually doesn’t do a big work up- they are trained to care for acute problems and will send you home if your vitals are good.
However, it would be nice if they recommended a particular department in the hospital.
Did you have all testing done through ER or your own doctor?
You could get an appointment with a gastroenterologist at the University Hospital- your primary care doctor can refer you and send along all information so far.
Even if you had a lot of tests done, some may have to be repeated.

Thank you! I had most testing done in the hospital and a little at my GP because she says there’s nothing else she can order. I like the idea of seeing the specialists at the university and I will try to get in touch with them tomorrow! Thanks for the advice!