I saw an Infectious Disease MD and this is the result (not good)

[Apo Sci]

There are so many things she said that rubbed me totally the wrong way, but the worst was this: The way she is required to diagnose says that even if she tested someone for something rare like shcisosomiasis (sorry if I spelled it wrong), and it was positive, she would have to disregard it UNLESS THE PERSON SAID THEY HAD BEEN TO GHANA (exactly) and had swum in a specific lake there. She isn't even permitted to retest, even if it was positive the first time. She must ignore it completely as a false positive.

I then said, but there's shciso in the Northern Midwest and in the Caribbean. She said "That's a different schiso."

NOTE: Schiso was just an example, this applies to any rare tropical disease or anything that "developed" countries supposedly don't have.

So....

1. You have to use magic words to be tested. Only the best liars will be tested and treated.

2. They do not permit American MD's to retest you, despite scientifically validated testing methods. So there goes their "evidence based" dogma.

3. I got the impression that there is no "panel" for rare diseases to be tested for, or at least not one that she has access to. Each individual parasitic illness has to be separately tested and possibly ignored or treated based on what a person says in their "medical history."

4. What kind of crap is it to say "that's a different schiso"? Sure there are different species, but the effects are still nasty. Who cares? Why not test for the one a person is likely to have come in contact with? (Is it just me or is that logical?)

5. I had just been reading about it in Pubmed because I was trying to figure out why for the millionth time I have UTI symptoms, with blood and white blood cells but the culture is negative. And a quinolone stops the white blood cells and blood. I'm not convinced I have urogenital schiso, but I had hoped that my contact with the Caribbean and the areas of the US that do have it would've been enough to trigger a test. The symptoms fit extremely well.

The entire thing was depressing but this was by far the most crushing.

I'm tempted to go to Hunter-Hopkins Center right away just because I'm so mad, but I'm not sure that's going to address my body's tendency to allow every infection to run rampant. I'm thinking Dr. Horowitz is a better bet. She claimed that since I didn't have low blood counts, my immune system must be fine.

It was a toxic mix of evidence-based and totally dogmatic lack of logic. I'm amazed she didn't see how she was contradicting herself.

I'm not usually the type to seek the "there there, it will be ok" type of response on forums, but I feel really crushed and could use a bit of support, or even ideas of what to do next.

I've been to one infectious disease MD. They appear trained to be very confident of their own limited knowledge base and main following official guidelines which limit treatment. They have a strong bias to avoid doing anything that isn't recommended. In my case I hit positive for nonspecific rocky mountain spotted fever and three different blood tests and suffered daily headaches after getting a flea bite from a feral cat. Testing could not identify the bacteria but that could be a new strain. The ID chalked it up to Lupus antibody mimicking but the testing preceded the lupus so I was skeptical. Lupus doesn't cause headaches. He authorized doxycycline but due to being on methotrexate (immunosuppression) I needed a six week course instead of his 2 week course. He refused to extend it. I convinced my PCP to extend it and after six weeks the daily headaches were eliminated. ID isn't helping patients by not ruling out all possibilities. You end up with invalid wastebasket diagnoses and continuation of suffering.

 

[pbyr]

I've been to one infectious disease MD. They appear trained to be very confident of their own limited knowledge base and main following official guidelines which limit treatment. They have a strong bias to avoid doing anything that isn't recommended.

Perfect!

 

[pbyr]

There are so many things she said that rubbed me totally the wrong way, but the worst was this: The way she is required to diagnose says that even if she tested someone for something rare like shcisosomiasis (sorry if I spelled it wrong), and it was positive, she would have to disregard it UNLESS THE PERSON SAID THEY HAD BEEN TO GHANA (exactly) and had swum in a specific lake there. She isn't even permitted to retest, even if it was positive the first time. She must ignore it completely as a false positive.

I then said, but there's shciso in the Northern Midwest and in the Caribbean. She said "That's a different schiso."

NOTE: Schiso was just an example, this applies to any rare tropical disease or anything that "developed" countries supposedly don't have.

So....

1. You have to use magic words to be tested. Only the best liars will be tested and treated.

2. They do not permit American MD's to retest you, despite scientifically validated testing methods. So there goes their "evidence based" dogma.

3. I got the impression that there is no "panel" for rare diseases to be tested for, or at least not one that she has access to. Each individual parasitic illness has to be separately tested and possibly ignored or treated based on what a person says in their "medical history."

4. What kind of crap is it to say "that's a different schiso"? Sure there are different species, but the effects are still nasty. Who cares? Why not test for the one a person is likely to have come in contact with? (Is it just me or is that logical?)

5. I had just been reading about it in Pubmed because I was trying to figure out why for the millionth time I have UTI symptoms, with blood and white blood cells but the culture is negative. And a quinolone stops the white blood cells and blood. I'm not convinced I have urogenital schiso, but I had hoped that my contact with the Caribbean and the areas of the US that do have it would've been enough to trigger a test. The symptoms fit extremely well.

The entire thing was depressing but this was by far the most crushing.

I'm tempted to go to Hunter-Hopkins Center right away just because I'm so mad, but I'm not sure that's going to address my body's tendency to allow every infection to run rampant. I'm thinking Dr. Horowitz is a better bet. She claimed that since I didn't have low blood counts, my immune system must be fine.

It was a toxic mix of evidence-based and totally dogmatic lack of logic. I'm amazed she didn't see how she was contradicting herself.

I'm not usually the type to seek the "there there, it will be ok" type of response on forums, but I feel really crushed and could use a bit of support, or even ideas of what to do next.

This is why people self medicate. I presume you are thinking schistomiasis which is a nematode. Praziquentel is the recommended drug for this nematode. Of note, I think this is the only nematode that requires Prazi, while others use mebendazole, albendazole etc.

The idea that parasites only exist outside of the US is absurd especially with global travel and food. I host a parasite forum and spent a good amount of time in this subject, let me know if I can help. I am curious to see if you had any visual of them.

Here is a resource https://www.cdc.gov/parasites/schistosomiasis/health_professionals/index.html#tx

 

[Apo Sci]

Perfect!

At the end of the day you have a big hurdles to overcome as a patient.

• Reasonable suspicion. You have to brainstorm to come up with a likely risk factor for infectious disease that is treatable.
• Treatability. Then you have to make your case to the medical providers to justify a course of action. In my case I used the Rocky Mountain Spotted Fever blood test positives to argue for a differential diagnosis that included an unidentified pathogen vs the possibility of it just being lupus related symtpms. That required knowledge of the diseases and whether the symptoms and progression supported one versus the other. Then after the ID prescribed the antiboitic I followed up with the respose to the drug doxycycline that supported the diagnosis to extend the treatment to the appropriate duration.

It's really important to have a good long-term working relationship with a primary care provider so you can consult with them. You have to walk a fine line where you are reasonably and rationally are discussing your case and have to challenge the standard algorithm in a defensable way.

In the case of antibiotics I could have ordered them from an unregulated pharmacy at great cost and taken the risk myself however I didn't want to make a mistake and end up wasting money or taking the wrong dose.

 

[pbyr]

At the end of the day you have a big hurdles to overcome as a patient.

• Reasonable suspicion. You have to brainstorm to come up with a likely risk factor for infectious disease that is treatable.
• Treatability. Then you have to make your case to the medical providers to justify a course of action. In my case I used the Rocky Mountain Spotted Fever blood test positives to argue for a differential diagnosis that included an unidentified pathogen vs the possibility of it just being lupus related symtpms. That required knowledge of the diseases and whether the symptoms and progression supported one versus the other. Then after the ID prescribed the antiboitic I followed up with the respose to the drug doxycycline that supported the diagnosis to extend the treatment to the appropriate duration.

It's really important to have a good long-term working relationship with a primary care provider so you can consult with them. You have to walk a fine line where you are reasonably and rationally are discussing your case and have to challenge the standard algorithm in a defensable way.

In the case of antibiotics I could have ordered them from an unregulated pharmacy at great cost and taken the risk myself however I didn't want to make a mistake and end up wasting money or taking the wrong dose.

This whole situation only adds burdens to the patient (dealing with doctors). I walked that road for a long time and decided to take more radical measures by treating myself. So far, I have been pleased with outcomes.