This is why I don't go to the doctor...

[Caraway]

We changed health insurance, and I have to find a new doctor.  I am currently in a downward spiral of autoimmune diseases and hormone imbalances.  I really need a doctor who can help untangle my issues and refer me out as needed; because my health is getting rapidly worse.  I have already done everything I can think of to calm my situation down, and eat an extremely limited diet.

Today was my first appointment and the doctor told me that food/diet does not influence autoimmune issues.  Food, she said, had nothing to do with disease.  Um, I'm celiac, and her specialty is, wait for it... diabetes.  🤯

At this point it seems easier to put MYSELF though medical school.  I feel so... defeated. 🥲

[Indigo Blue]

9 minutes ago, Caraway said:

Food, she said, had nothing to do with disease

🤯

[catz]

I had to find a duck emoji for that quack.  🦆  That is super weird and depressing.  I took a few zoom cooking classes from a nutritional expert from our local university last year and she teaches whole foods based nutrition to med students.  She said how clueless most of them are and how little time they spend on it. 

I hope you can find someone who is a better fit quickly!  

[Hen]

wow, that is ...something.  I remember a few decades ago when moms of kids with autism were being patted on the head by the medical establishment when they kept claiming there was something going on with "gut issues" and that going on limiting diets was helping. Now, decades later, I'm seeing article by the establishment that the gut is indeed tied to immunity.  

I'm so sorry Caraway,  I know how demoralizing it is to feel patronized.  

hugs. and I hope you find the right doctor. 

 

[fraidycat]

Ugh! I'm so sorry. I think it is repeated small interactions like this one that has created the distrust in the medical field and 💩show we see today.

I found that a well respected naturopath is the one who has helped my family. But, one sometimes has to sift through the ummm, nutty ones to find a good one there too. 🙁

I hope you are able to get the help you need.

 

[Kassia]

I am so sorry.  I have gone through this so many times and it is why I hate seeking medical care.  I find that most appointments are a waste of time and money.  Doctors give me terrible medical advice and I have to pay for it.  There is no accountability.  Sometimes it has been downright dangerous due to being misdiagnosed or not taken seriously.

And we have to pay for it.  There is no way out of it.  We have to sit there knowing the doctor is wrong and then still pay them!  It makes me crazy.  

I could go on and on and on...it is so frustrating. 

Big hugs to you and I hope you can get the medical care you need and deserve.

 

[TravelingChris]

3 hours ago, Caraway said:

We changed health insurance, and I have to find a new doctor.  I am currently in a downward spiral of autoimmune diseases and hormone imbalances.  I really need a doctor who can help untangle my issues and refer me out as needed; because my health is getting rapidly worse.  I have already done everything I can think of to calm my situation down, and eat an extremely limited diet.

Today was my first appointment and the doctor told me that food/diet does not influence autoimmune issues.  Food, she said, had nothing to do with disease.  Um, I'm celiac, and her specialty is, wait for it... diabetes.  🤯

At this point it seems easier to put MYSELF though medical school.  I feel so... defeated. 🥲

How idiotic.  For those two disease, food definitely makes a giant difference.  Not for rheumatogical diseases but those two aren't rheumatological. 

I once had a doctor in a hospital tell me that vasculitis is only in children---WTF- it is common with cancer, rheumatological diseases, etc, etc, etc.

[mom2scouts]

1 hour ago, Kassia said:

I am so sorry.  I have gone through this so many times and it is why I hate seeking medical care.  I find that most appointments are a waste of time and money.  Doctors give me terrible medical advice and I have to pay for it.  There is no accountability.  Sometimes it has been downright dangerous due to being misdiagnosed or not taken seriously.

And we have to pay for it.  There is no way out of it.  We have to sit there knowing the doctor is wrong and then still pay them!  It makes me crazy.  

I could go on and on and on...it is so frustrating. 

Big hugs to you and I hope you can get the medical care you need and deserve.

 

This is my experience too. Often going to the doctor is a waste of time and money. I've only been to the doctor once in the last 15 years and that was because I needed an x-ray to verify a break. They usually didn't tell me anything I didn't already know, so I just stopped going. I even had a doctor that admitted I knew more about a medical issue I had than he did. My mom jokes that I should be her doctor because 99%+ of the time she goes to the doctor and they tell her exactly what I already told her.

OP, I hope you can find the doctor you need.

[TravelingChris]

3 hours ago, Caraway said:

We changed health insurance, and I have to find a new doctor.  I am currently in a downward spiral of autoimmune diseases and hormone imbalances.  I really need a doctor who can help untangle my issues and refer me out as needed; because my health is getting rapidly worse.  I have already done everything I can think of to calm my situation down, and eat an extremely limited diet.

Today was my first appointment and the doctor told me that food/diet does not influence autoimmune issues.  Food, she said, had nothing to do with disease.  Um, I'm celiac, and her specialty is, wait for it... diabetes.  🤯

At this point it seems easier to put MYSELF though medical school.  I feel so... defeated. 🥲

Can you afford a concierge doctor?  Mine only costs 1700 a year and with that I get a doctor I can call night, day and weekends, including holidays and he has helped me.   He comes to the hospital to make sure the hospitalists are doing the right thing.  I get a very complete physical each year.  He refers me to good people or in some cases- like my rheumatologist, he referred me to who I wanted to be referred to.  He doesn't know everything but he is always willing to learn and does a lot of reading.  He picks up the pieces when some other medical professionals drop the ball.  Like my orthopedist staff prescribed too little pain medications and no nerve medications and I developed level 10 pain the evening before Thanksgiving.  All that weekend, we were talking and figuring out how to cope with my level 10 pain (he was out of town, neurologist who prescibed nerve pain had no answering service, etc so he agreed with me to increase my anti-depressant/nerve medication to lessen the pain.  And then he prescribed me an adequate dose of pain medication- which was a completely normal level of pain medication- not anything that would raise red flags.  He also got me home health care after this operation while the PA from the orthopedic office thought I should be somehow travelling to therapy offices three times a week.  Also he prescribed PT at a level I was unable to do anyway at that point- still having breakthrough level 10 pain-- and when PT and OT and the Nurse came- it was clear that I needed OT before PT- since I was having a hard time just getting around because my arms were too weak.  

He also has prescribed medications that he normally or never before prescribed just because a physician stopped practicing (that was a few months of Humira until I got to the new rheumatologist, the one who closed his office had had me on Humira and it had been working so I wanted to stay on in while getting a new rheumatologist appt) or because I switched physicians (my prescription vitamin combo which is for people with brain issues- started it because I had post-concussion syndrome and continue it because I have lots of brain fog with my autoimmune diseases).    Oh and he doesn't rush me out of the office and we can always get an appt the same or next day,  Plus, he has prescribed me emergency medication in other states - like steroid pack when I couldn't hardly walk on our New Orleans vacatioh).  

[KidsHappen]

That's why I hope I pass before my doctor retires. He has been my doctor for 17 years now and I have a very complicated medical history which I don't even want to have to try and explain to a new doctor. Not to mention he coordinates my care between all my various doctors. 

[LifeLovePassion]

I've heard that same thing (food doesn't matter) from my (now former) gastroenterologist. 

I am heading in for a physical soon with a new primary because mine retired. She was at least open to ideas so I hope this new one is too. 

[TechWife]

I totally relate to this! It’s all crazy. I don’t think doctors take patients seriously, which is really weird. 

[plaidpants]

Ugh, I feel this.

I got told my asthma wasn't asthma because... it was the literal definition of mild asthma. And yes, you can have a negative reaction/response to just about anything, as the allergy/immunology people will tell you! Or the way they act like you're dramatic because you know your own history: dude, you have 43584 patients. I have me, and a couple of family members. Who is going to know the specifics better?

[Faith-manor]

Wow! That is one lunatic doctor!

Says the woman who is allergic to wheat, verified by allergist, and who not only has gastro problems when exposed, but severe skin reaction, and now has to carry an epi pen because it is marching towards anaphylaxis rapidly.

Sigh.

And believe me, the clown that poses as my "primary" has zero concept. Zero. So ya. I do once per year for the BP med, and the allergist once every couple of years when my epi expires, and then don't bother the rest of the time.

Meanwhile, my sister in France, has a marvelous primary, nutritionist (sis has celiac), and immunologist. Just awesome team. She hasn't had all the nonsense getting to the bottom of her problems there like she did here. The medical culture there is different. I think it is because it is not a for-profit system with universal coverage, and doesn't cost so much to operate a practice. Med school is paid for, and I think that has a very positive effect on medical practitioners there. Sis would be dead if she was here.

OP, what a 🦃! I am sorry that happened.

[matrips]

9 hours ago, TravelingChris said:

Can you afford a concierge doctor?  Mine only costs 1700 a year and with that I get a doctor I can call night, day and weekends, including holidays and he has helped me. 

How does that work with insurance? The $1700 covers him, but who covers the specialist referrals and such?  Does your insurance honor the referrals he gives?

[matrips]

Does anyone find DO doctors better than MDs in the sense that they are more open to interactions like diet and alternative treatments?

[TechWife]

43 minutes ago, matrips said:

Does anyone find DO doctors better than MDs in the sense that they are more open to interactions like diet and alternative treatments?

I’m interested in this too. I’m looking for new primary care and one of the practices has both MDs and DOs. 

[wintermom]

14 hours ago, Caraway said:

We changed health insurance, and I have to find a new doctor.  I am currently in a downward spiral of autoimmune diseases and hormone imbalances.  I really need a doctor who can help untangle my issues and refer me out as needed; because my health is getting rapidly worse.  I have already done everything I can think of to calm my situation down, and eat an extremely limited diet.

Today was my first appointment and the doctor told me that food/diet does not influence autoimmune issues.  Food, she said, had nothing to do with disease.  Um, I'm celiac, and her specialty is, wait for it... diabetes.  🤯

At this point it seems easier to put MYSELF though medical school.  I feel so... defeated. 🥲

Isn't it possible that your doctor may have been talking about the mechanism of getting the disease rather than dealing with it once you've been diagnosed? Eating gluten doesn't cause celiac. Continuing to eat gluten when you have celiac can certainly have consequences on your body. Same with diabetes, not everyone who eats lots of sugar, etc., gets diabetes. It's not that simple. There are many factors involved.

I know when I have complex health issues, I really wish I'd recorded my appointments with the dr. What they actually say and how I interpret it can be completely different. I'm not trying to infer that you did anything wrong, and you are certainly the "expert" on what you've been experiencing with your own health. However, drs see hundreds of patients and have a much broader scope of the various diseases, mechanisms, etc. 

[Scarlett]

1 hour ago, matrips said:

Does anyone find DO doctors better than MDs in the sense that they are more open to interactions like diet and alternative treatments?

Our primary is a DO and we love love love him.  He is like a detective in regards to ailments.

[Kassia]

56 minutes ago, Scarlett said:

Our primary is a DO and we love love love him.  He is like a detective in regards to ailments.

Don't let him ever retire!  

[Scarlett]

Just now, Kassia said:

Don't let him ever retire!  

Right?!  Thankfully he is younger than we are.  

[Clemsondana]

I have a friend who is married to a doctor so they have lots of doctors in their circle of acquaintances.  We were talking about the microbiome and gut health and some of the new research about how that could affect what molecules and nutrients we absorb and friend said that most of the doctors think that stuff is all bunk.  It's so weird to me - I mean, I know that they can't do much with it as far as prescribing a treatment because we don't know enough, but that's a far cry from thinking it's nonsense.  To me, those sorts of things are worth experimenting with.  I loved my allergist - when I'd ask if it made sense that doing X caused Y, he said that if I saw a relationship, it was probably real because medicine certainly didn't know enough to explain everything or know how I felt...and even if it was just a placebo, if it was working, that was good.  

[scrapbookbuzz]

14 hours ago, mom2scouts said:

This is my experience too. Often going to the doctor is a waste of time and money. I've only been to the doctor once in the last 15 years and that was because I needed an x-ray to verify a break. They usually didn't tell me anything I didn't already know, so I just stopped going. I even had a doctor that admitted I knew more about a medical issue I had than he did. My mom jokes that I should be her doctor because 99%+ of the time she goes to the doctor and they tell her exactly what I already told her.

OP, I hope you can find the doctor you need.

Oh, I like you already! Can we be friends? 😉 To the OP, I am so sorry. It can be so annoying when those that are supposed to already know how to help you not just don't, but then give you obviously very bad "advice". One of my ultimate goals is to educated MDs on the BENEFITS of natural medicine for their patients. Ove the past few years, I've come to realize how out of touch and "ancient" in thinking the current med school curriculum is. It definitely needs a complete overhaul. But then, I've been told (have not verified) that most med school curriculum is sponsored by the big pharmaceutical companies. Do with that what you will. Hope you find the help you need!

[scrapbookbuzz]

4 hours ago, matrips said:

Does anyone find DO doctors better than MDs in the sense that they are more open to interactions like diet and alternative treatments?

It has been quite some time since I had a DO as my primary. But I do remember she was much more about finding the root cause before prescribing medication. I am fortunate now to have an MD who was raised in India and so has a more natural-minded approach to things. We still disagree on things occasionally but she at least listens without judgement or a scathing retort. 

[Caraway]

3 hours ago, wintermom said:

Isn't it possible that your doctor may have been talking about the mechanism of getting the disease rather than dealing with it once you've been diagnosed? Eating gluten doesn't cause celiac. Continuing to eat gluten when you have celiac can certainly have consequences on your body. Same with diabetes, not everyone who eats lots of sugar, etc., gets diabetes. It's not that simple. There are many factors involved.

I know when I have complex health issues, I really wish I'd recorded my appointments with the dr. What they actually say and how I interpret it can be completely different. I'm not trying to infer that you did anything wrong, and you are certainly the "expert" on what you've been experiencing with your own health. However, drs see hundreds of patients and have a much broader scope of the various diseases, mechanisms, etc. 

 

*I* was talking about how for me foods cause a reaction/inflammation that trigger an autoimmune flare (as confirmed by another doctor) and that my autoimmune symptoms are closely tied to what I eat.  She told me this was impossible.  So I don't know.  🤷‍♀️

[Caraway]

16 hours ago, Kassia said:

I am so sorry.  I have gone through this so many times and it is why I hate seeking medical care.  I find that most appointments are a waste of time and money.  Doctors give me terrible medical advice and I have to pay for it.  There is no accountability.  Sometimes it has been downright dangerous due to being misdiagnosed or not taken seriously.

And we have to pay for it.  There is no way out of it.  We have to sit there knowing the doctor is wrong and then still pay them!  It makes me crazy.  

I could go on and on and on...it is so frustrating. 

Big hugs to you and I hope you can get the medical care you need and deserve.

 

 

Yes, exactly!

 

14 hours ago, mom2scouts said:

This is my experience too. Often going to the doctor is a waste of time and money. I've only been to the doctor once in the last 15 years and that was because I needed an x-ray to verify a break. They usually didn't tell me anything I didn't already know, so I just stopped going. I even had a doctor that admitted I knew more about a medical issue I had than he did. My mom jokes that I should be her doctor because 99%+ of the time she goes to the doctor and they tell her exactly what I already told her.

OP, I hope you can find the doctor you need.

 

Yeah, my best medical care has come from me figuring out the problem.  🤯

 

 

14 hours ago, TravelingChris said:

Can you afford a concierge doctor?  Mine only costs 1700 a year and with that I get a doctor I can call night, day and weekends, including holidays and he has helped me.   He comes to the hospital to make sure the hospitalists are doing the right thing.  I get a very complete physical each year.  He refers me to good people or in some cases- like my rheumatologist, he referred me to who I wanted to be referred to.  He doesn't know everything but he is always willing to learn and does a lot of reading.  He picks up the pieces when some other medical professionals drop the ball.  Like my orthopedist staff prescribed too little pain medications and no nerve medications and I developed level 10 pain the evening before Thanksgiving.  All that weekend, we were talking and figuring out how to cope with my level 10 pain (he was out of town, neurologist who prescibed nerve pain had no answering service, etc so he agreed with me to increase my anti-depressant/nerve medication to lessen the pain.  And then he prescribed me an adequate dose of pain medication- which was a completely normal level of pain medication- not anything that would raise red flags.  He also got me home health care after this operation while the PA from the orthopedic office thought I should be somehow travelling to therapy offices three times a week.  Also he prescribed PT at a level I was unable to do anyway at that point- still having breakthrough level 10 pain-- and when PT and OT and the Nurse came- it was clear that I needed OT before PT- since I was having a hard time just getting around because my arms were too weak.  

He also has prescribed medications that he normally or never before prescribed just because a physician stopped practicing (that was a few months of Humira until I got to the new rheumatologist, the one who closed his office had had me on Humira and it had been working so I wanted to stay on in while getting a new rheumatologist appt) or because I switched physicians (my prescription vitamin combo which is for people with brain issues- started it because I had post-concussion syndrome and continue it because I have lots of brain fog with my autoimmune diseases).    Oh and he doesn't rush me out of the office and we can always get an appt the same or next day,  Plus, he has prescribed me emergency medication in other states - like steroid pack when I couldn't hardly walk on our New Orleans vacatioh).  

 

I was using a concierge doctor, but they moved out of the local area.  I feel like I need at least someone in our insurance network who "knows" me in case I need local hospital care.  But I will not sacrifice my health for this so I may be back to paying out of pocket.

 

[melmichigan]

3 hours ago, Scarlett said:

Our primary is a DO and we love love love him.  He is like a detective in regards to ailments.

My neurologist is a DO.  He is awesome.  We started with supplements to treat my spasticity.  I wish there were more DOs in my area for family practice.  My internist was awesome, and a DO.  My current PCP is new, my old doc retired, but he seems more open minded than most for an MD.  I see DOs for all my specialists now that it's been brought up. 😁

Edited January 19, 2022 by melmichigan

[wintermom]

2 minutes ago, Caraway said:

 

*I* was talking about how for me foods cause a reaction/inflammation that trigger an autoimmune flare (as confirmed by another doctor) and that my autoimmune symptoms are closely tied to what I eat.  She told me this was impossible.  So I don't know.  🤷‍♀️

Interesting. What did the dr suggest do cause autoimmune flares? Maybe the link you are noticing is not the causal link, just a correlation. The mechanisms in the body for hormone levels are very complex. I worked for an edocrinologist for a year, and listened to her lecture several times about the hormone mechanisms in the body in relation to bones. It's crazy complex. Many of the patients she worked with on a clinical drugs trial had more than one specialist they saw. 

It sounds like you may benefit from a team of specialists working with you.

[Harriet Vane]

6 hours ago, TechWife said:

I totally relate to this! It’s all crazy. I don’t think doctors take patients seriously, which is really weird. 

While I resist painting a large swath of people with a broad brush, I have to agree with the bold statement. I think there is a culture of minimizing within the medical profession. (On a different note, there is also a culture of minimizing in the social work profession. Big time.) Most people who have a Big Deal Condition have had literal years of doctor visits and tests before the diagnosis comes. And there are lots of lesser but still life-impacting conditions that are very, very hard to get a validating response from a doctor. I feel I have been really lucky to have good doctors both here and in Chicago, where we used to live. Folks who are brainy and who really care.

Yet even so I lived with anemia for years before I crashed so badly they finally dug a little more to figure out what was going on. Similarly, it also took me almost a decade to get my EDS diagnosis. And the real kicker that I am still angry about is how my doctors never recognized how badly sepsis deconditioned my body resulting in significant problems with balance and walking, and how badly that abdominal infection compromised my digestive system. Both of those results were entirely predictable and should have been handled proactively, but I was treated like I was just whining or in need of antidepressants. It was a lot of work and insistent pushing when I was sick and exhausted, and it took a TON OF MONEY out of pocket to get the needed testing and attention. I had to pull myself up by my bootstraps.

So how could that happen to me when I had good doctors? Genuinely smart and genuinely caring people? Two of whom were treasured family friends? I really do believe there is a culture of minimizing within the medical profession as well as a tendency to compartmentalization. They tend to focus narrowly on checking boxes without considering either the spectrum/range of combinations of symptoms or individual variations. And they are definitely under pressure to see too many people in a day and to not drive up costs. They are, by and large, good people who are in a system that makes it very difficult to give an individual patient the time and attention needed to figure out any condition that is outside certain common norms.

[Kassia]

Very good point @Harriet Vane - I hadn't thought of it that way.  Many of my problems have been with very nice and caring doctors (others have not).  I'm sorry for all you've been through.  It's just so frustrating and disheartening to go through all of that when you are doing your best to get the care you need.  

 

[goldberry]

7 hours ago, matrips said:

Does anyone find DO doctors better than MDs in the sense that they are more open to interactions like diet and alternative treatments?

I had one DO that was awesome.  When I moved I found another DO.  He was more rigid, closed-minded, quick-to-prescribe than a regular MD.  So who knows!

[Carol in Cal.]

Sigh.

I just got back on Kaiser after a two year hiatus, and wanted my regular doctor back—the one who knows that I’m not crazy, and who appreciates my thorough summaries and gives me drugs when I tell her I need them because she knows that generally I don’t want to take them and won’t ask for them unless and until it’s really important to do so.  

So their stupid website walked me through all this ‘new patient’ stuff and wouldn’t let me do anything until I chose a doctor, but she was not among the choices.  I kept saying that I did not want a new doctor, and finally it gave up and let me go back to her but it was touch and go and definitely not the norm.  She’s older than me.  I think it’s time I start to get to know others in her group.

[Ann.without.an.e]

I haven't read the responses...

I know without a doubt that there are foods that trigger an autoimmune response in me. I'm not usually a conspiracy theorist but I think the pharmaceutical industry is in bed with the education of medical professionals and push the dialogue that the only answer is a medication. My doctor is now a combo MD/ND but she used to be just an MD in a basic practice and she says this is 100% true. All of their continuing education is sponsored by pharm companies and pharm companies are also far too involved in getting your degree as well. Not that meds are not needed at times, they are!  But they push aside the other contributing factors. 

[TravelingChris]

3 hours ago, Ann.without.an.e said:

I haven't read the responses...

I know without a doubt that there are foods that trigger an autoimmune response in me. I'm not usually a conspiracy theorist but I think the pharmaceutical industry is in bed with the education of medical professionals and push the dialogue that the only answer is a medication. My doctor is now a combo MD/ND but she used to be just an MD in a basic practice and she says this is 100% true. All of their continuing education is sponsored by pharm companies and pharm companies are also far too involved in getting your degree as well. Not that meds are not needed at times, they are!  But they push aside the other contributing factors. 

Foods aren't contributing factor at all to my autoimmune diseases.  However, weather is, pollen levels are= not just to my asthma, but to my entire autoimmune spectrum of diseases, other allergens than pollen are, recovery from an infection always causes a flare-because my body has all these antibodies to the sickness made but no more sickness, overdoing it definitely causes a flare, and finally stress is the biggest trigger-- I got Sjogren's right after my father died, I got RA right after my mother died, while it is hard to figure out when exactly my lupus and ankylosing spondylitis and asthma actually started but flares of them go right along with stress.

[dsmith]

I haven't been able to find good doctors at all since moving to our current area 12 years ago. I keep my neurologist only because she is cheap and prescribes the meds I need but she is from where I used to live and a long drive. The ones where I currently live are even worse. I stopped bringing up any diet related issues, like increased numbness when eating gluten. Thankfully I have an awesome neuro for my son, and he follows his patients into adulthood. Not many do, so we were lucky to find him. When I was diagnosed with MS he became very proactive in recommendations for prevention in ds. His other doctors shrugged it off. I'm currently trying to get my elderly neighbor's doctor to refill his prednisone so he can taper off instead of suddenly stopping at 20 mg a day. He has psoriasis, and could get a severe flare from tapering too quickly or not tapering at all. He's been on it for 12 weeks, so it will also be a shock to his adrenal system. And this guy's a doctor?!?!?

[Jean in Newcastle]

zombie thread

[TravelingChris]

On 1/19/2022 at 8:23 AM, matrips said:

How does that work with insurance? The $1700 covers him, but who covers the specialist referrals and such?  Does your insurance honor the referrals he gives?

Insurance pays for everything except the 1700.  We do not need insurance to give referrals except for very unique circumstances like certain operations.  

[Halftime Hope]

On 1/18/2022 at 6:24 PM, Caraway said:

We changed health insurance, and I have to find a new doctor.  I am currently in a downward spiral of autoimmune diseases and hormone imbalances.  I really need a doctor who can help untangle my issues and refer me out as needed; because my health is getting rapidly worse.  I have already done everything I can think of to calm my situation down, and eat an extremely limited diet.

Today was my first appointment and the doctor told me that food/diet does not influence autoimmune issues.  Food, she said, had nothing to do with disease.  Um, I'm celiac, and her specialty is, wait for it... diabetes.  🤯

At this point it seems easier to put MYSELF though medical school.  I feel so... defeated. 🥲

oh, gosh. That's unconscionable.