Healthcare System Faiure? Advice Requested

[brookline]

I’m running into challenges around my medical matters to the point where I’m giving up on seeking treatment through the US medical system and would welcome some advice on what to do next.

I’m 55 and potentially have an autoimmune disorder with symptoms going in all directions (joints, fascia, circulatory system, heart, etc.). Also food and environmental allergies. I've had symptoms since at least 2000 and probably into the 1990s.

I’ve not been successful in getting a comprehensive diagnosis of what I have despite seeing many doctors over the past couple of decades at name-brand teaching hospitals. They only seem able to treat things symptomatically and in isolation and this just leaves me overwhelmed as I have so many issues going on. (Case in point: a rheumatologist told me last month I have “localized conditions.”)

That said, even if I get a diagnosis, I’m not sure how helpful it will be beyond facilitating a future application for disability benefits. I’ve taken lots of medications; gotten surgeries; gone to physical therapy, chiropractors, nutritionists, etc. While all were helpful to varying degrees, the pattern seems to be that things flare up, then they stabilize, then some new condition appears, then the cycle repeats, albeit with me in worse shape then at the beginning.

A lot of the relief I get from the providers is short term as in days or sometimes hours and requires a huge maintenance investment of time & money. The medications I’ve been prescribed to date all seem to cause significant side effects that exceed the impact of the conditions (as nasty as they are). The surgeries cause their own problems (e.g., scarring fascia, which can limit joint mobility).

Given the volume of issues, I’m not what to sure do next. I’ve been out of work since July trying to get my arms around a flare-up and rehabilitate from it. Over the past few weeks, I’ve learned I have new issues: compacted discs in my spine and impaired nerve function in my legs and one side of my heart is enlarged. I have no idea at this point what to expect from these conditions, except lots more tests if I decide to follow these findings up. I can’t imagine an employer being excited to have a new employee who is out of the office 2-3 days a week getting tests for this stuff

I would really like and need financially to get back to full-time work. Given my health issues, I need to put some money away for retirement because I’ll need to retire early whether I want to or not. I’ve gotten my best health improvement over time from a tight organic diet, allergy shots, and going to private-pay physical therapists who aren’t bound by the restrictions of insurance companies. I’m thinking of ceasing to try to get a comprehensive diagnosis or even bothering with getting the symptomatic stuff checked on or diagnosed. So, I'd go back to work and just keep myself as fit as I can and let nature take its course.

What do people think? Has any of you had a situation like this before? Am I correct in believing the medical system can’t really help me and it's a waste of time to try?

[chenda]

Have you considered going abroad for a second opinion/treatment?

Somewhere with cheap healthcare like Turkey or Mexico, where you could also perhaps afford the physical therapy on a private pay basis.

[Sclass]

First off I’m really sorry this is happening to you.

I know first hand how it feels when doctors cannot help you and keep coming up short on cures.

You’ve been trying the same experiment over and over and failing. Maybe you’re wasting your time. In my case I finally found that special doctor who went the extra step…just one step and found my tumor that was hidden in all my imaging. I even met one of his colleagues after the discovery and he said “what possessed Dr. Jones to do that test? What he did was irregular. We never do that.” So much became clear when I heard that. In other words they would have never found it unless Dr. Jones didn’t step outside the box. It was disturbing but it told me a lot about how my hospital worked.

Have you thought about Chinese Traditional Medicine? It may be worth a Hail Mary to see an herbalist. I’ve been shocked at how some of these “cures” worked for me and my mom with inflammation. I caught things a little late with mom and I suspect her dementia was a result of inflammation in her nervous system. Just a thought. It was pretty oddball stuff like berries and roots and it was hard to get my care team to prep and administer the medicine reliably. Regrets. I was too busy with other aspects of her care to stay on top of the herbal science project.

Keep searching. I have a buddy who is going through a similar health emergency. His doctors cannot figure it out. They’re keeping him alive with steroids. These people are supposed to be the best out of Stanford Medical Center. It has become a real science project but they’ve yet to help him.

[DutchGirl]

One issue: are you a Caucasian man who has only ever lived in the US?

If you have travelled (a lot) or lived abroad (for some time), I would consider talking to doctors from the area(s) where you have lived, or to tropical disease doctors in the US.

If you are not a Caucasian, you might consider speaking to doctors who have more knowledge about the population that your genes do come from.

[Ego]

https://www.nature.com/articles/s41586-021-03380-y

[Western Red Cedar]

I'd encourage you to check out this interview which discusses how trauma fuels disease: https://www.youtube.com/watch?v=AEpD2o6MZOk

Gabor Mate talks a lot about autoimmune diseases in particular and how western medical treatments are ineffective in treating those. His interview with Mayam Bialik is also good: https://www.youtube.com/watch?v=KWz9I-7TAcs

------

I had a number of unusual symptoms pop up in my early 30's. One of the strangest and most concerning ones was joint pain that rotated throughout my body. I saw a number of specialists and never received a diagnosis. I ended up doing a lot of research on my own. What worked for me was limiting inflammatory foods, eliminating caffeine and alcohol, eliminating all processed foods, prioritizing sleep, and doing my best to limit work-related stress.

Have you tried an elimination diet or worked with a nutritionist yet? Allergy testing won't necessarily identify food intolerances.

[brookline]

https://www.nature.com/articles/s41586-021-03380-y

This article is a bit abstract. Can you suggest what you're thinking I should do? What should I subtract out of my rehab strategy?

[brookline]

I'd encourage you to check out this interview which discusses how trauma fuels disease: https://www.youtube.com/watch?v=AEpD2o6MZOk

Gabor Mate talks a lot about autoimmune diseases in particular and how western medical treatments are ineffective in treating those. His interview with Mayam Bialik is also good: https://www.youtube.com/watch?v=KWz9I-7TAcs

------

I had a number of unusual symptoms pop up in my early 30's. One of the strangest and most concerning ones was joint pain that rotated throughout my body. I saw a number of specialists and never received a diagnosis. I ended up doing a lot of research on my own. What worked for me was limiting inflammatory foods, eliminating caffeine and alcohol, eliminating all processed foods, prioritizing sleep, and doing my best to limit work-related stress.

Have you tried an elimination diet or worked with a nutritionist yet? Allergy testing won't necessarily identify food intolerances.

1. I've seen a couple of nutritionists. I was on a Paleo AIP diet for years, though I 've slacked off and gone to Primal (no dairy though) with primal-permitted processed food.
2. My stress level is high due to work (high-stress career) and rough current family life. I attempted a career change to a lower stress career which fizzled out. I can make my family stress lower but this is a slow process.

[brookline]

One issue: are you a Caucasian man who has only ever lived in the US?

If you have travelled (a lot) or lived abroad (for some time), I would consider talking to doctors from the area(s) where you have lived, or to tropical disease doctors in the US.

If you are not a Caucasian, you might consider speaking to doctors who have more knowledge about the population that your genes do come from.

Yes, I'm a US white guy.

[brookline]

First off I’m really sorry this is happening to you.

I know first hand how it feels when doctors cannot help you and keep coming up short on cures.

You’ve been trying the same experiment over and over and failing. Maybe you’re wasting your time. In my case I finally found that special doctor who went the extra step…just one step and found my tumor that was hidden in all my imaging. I even met one of his colleagues after the discovery and he said “what possessed Dr. Jones to do that test? What he did was irregular. We never do that.” So much became clear when I heard that. In other words they would have never found it unless Dr. Jones didn’t step outside the box. It was disturbing but it told me a lot about how my hospital worked.

Have you thought about Chinese Traditional Medicine? It may be worth a Hail Mary to see an herbalist. I’ve been shocked at how some of these “cures” worked for me and my mom with inflammation. I caught things a little late with mom and I suspect her dementia was a result of inflammation in her nervous system. Just a thought. It was pretty oddball stuff like berries and roots and it was hard to get my care team to prep and administer the medicine reliably. Regrets. I was too busy with other aspects of her care to stay on top of the herbal science project.

Keep searching. I have a buddy who is going through a similar health emergency. His doctors cannot figure it out. They’re keeping him alive with steroids. These people are supposed to be the best out of Stanford Medical Center. It has become a real science project but they’ve yet to help him.

1. I got lucky with a rheumatologist who suggested I drop wheat and dairy back in 2011. That was miraculous and I keep hoping for a subsequent miracle.
2. How would I find a competent herbalist? I know an acupuncturist. Ask her?
3. I'm sorry to hear about the struggles you, your mother, and buddy have been through/are going through. It's really frustrating to see that these issues are common.

[Ego]

Broadly, I agree 100% with @WRC's post above.

Whenever I feel inflammation, the first thing that comes to mind is fasting. I do not have allergies but I know someone who finds their allergies subside significantly when they fast. There is a lot of research supporting both. Fasting is not a profitable solution and physicians are reluctant to prescribe it.

I am sorry you are suffering.

[Western Red Cedar]

You might review this thread regarding your environmental allergies: viewtopic.php?p=128674#p128674

I'd apply this advice from Jacob to both your diet and your environment.

If you're looking for a specific trigger, remember you're dealing with a complex system with a lag time meaning you can only change one thing a a time .. then wait two weeks. Then change the next. It's a rather tricky thing to debug.

This post is also probably worth exploring more:

I am just going to post here quickly, but I have a lot more to say about this. I've spent this entire year studying Nutritional Therapy, and a BIG factor in allergies is actually intestinal health and how permeable your gut is. The more permeable and more time your gut is spent not being as selective as it should with what it lets into your blood stream, the more allergies, mood/neurological issues, and yes, autoimmune issues happen to people.

See more in the book: "Gut And Psychology Syndrome" (GAPS) by Dr. Natasha Campbell-McBride

I spent this summer doing the GAPS diet to heal my gut, as I was experiencing a lot of issues after my brain injury, including severe eczema and acne and anxiety. My life-long struggle with digestive issues was literally CURED, and I started pooping EVERY DAY for the first time in my life, lost the bloat, lost the stomach pains, AND my skin got tons better and now I feel more energetic, focused, and have a better mood than ever before in my life.

There are countless studies and now a lot of books coming out about this connection between gut health and many of the issues you listed. It's almost "hip" now. If you are interested in more info, PM me.

FWIW - I saw a rheumatologist, gastroenterologist, allergists, three physical therapists, a psychologist, and an acupuncturist. Possibly others that I can't think of right now. Nobody seemed to know what was going on. Focusing on diet and nutrition was helpful as it was something within my sphere of control. Noticing that gluten seemed to be having a detrimental effect on how I felt was an eye-opener and made me realize that I needed to figure some of these issues out for myself. My self-diagnosis was ultimately chronic inflammation that was a product of stress and diet. I was pushing myself too hard and my body was screaming at me to stop. None of the specialists provided a diagnosis, but they were sometimes helpful in ruling things out, such as celiac.

[Sclass]

I do not have allergies but I know someone who finds their allergies subside significantly when they fast. There is a lot of research supporting both. Fasting is not a profitable solution and physicians are reluctant to prescribe it.

This is really interesting. I found water fasting transforming. @Brookline If you’re up to it maybe it’s worth a go.

I don’t know how to locate a Chinese traditional medicine doctor. If I had to do it again I’d wander into the Chinese herb shop in any large Chinese district and tell them what is bothering me. In the past my martial arts instructor would guide me through this process. There was a loose connection between the groups.

ETA - yes, your acupuncturist is a good place to ask.

[jacob]

It might be useful to know what you're up against and just how complex the [immune] system you're dealing with is.

This is one of the best non-fiction popular science books, I've ever read. (Because it assumes that the reader is an intelligent layman.)
https://www.amazon.com/Immune-Journey-M ... 593241312/
(This will almost surely not help you diagnose anything, but it will show just how complicated the problem is... and maybe also avoid quack treatments.)

Dealing with complex systems, I have three pieces of advice:
1) Only change one thing at a time. (Consider lag time.)
2) Only do reversible changes.
3) Consider unknown-knowns. (You or your doctor might not be asking the right questions.)

[chenda]

Just be aware that many alternate therapies like acupuncture have little if any scientific basis. Any efficacy is likely to be the placebo effect at best.

Diet is certainly worth exploring but it's a bit of a minefield with conflicting studies, and, I've noticed, a lot of ideological driven conflict. Discussions relating to diet seem to get as divisive as the worse sort of political debates (especially when vegetarianism and veganism is being discussed)

However, to declare my own bias, I am a big believer in a low GI diet. Maintaining stable blood glucose and insulin is good for anyone (especially if you're insulin resistant or, of course, diabetic) Insulin is a master hormone and it effects many other hormones in ways not fully understood. It is likely, for example, that acne is caused indirectly by insulin, as teenagers are naturally insulin resistant.

[Slevin]

Diet is certainly worth exploring but it's a bit of a minefield with conflicting studies, and, I've noticed, a lot of ideological driven conflict. Discussions relating to diet seem to get as divisive as the worse sort of political debates

Just a complex system with multiple answers and everyone selling their own book (I.e. what works for them). Yeah it’s going to be messy and complicated and what worked for someone else won’t necessarily work for you so it’s a whole DIY field where there are lots of options and you get to wade through trying tons of things out until you find something that works decently for you.

To OP: As mentioned above, debugging humans based on symptomatic issues that have a nearly infinite amount of possible (and possibly multifaceted) causes is an incredibly difficult and complicated endeavor. Congrats (and I’m sorry, it sucks) on being one of the unlucky ones who didn’t get an answer in the “common issues” part of the screenings. Now it’s up to people throwing spaghetti ideas at the wall based on individual symptoms until they find a diagnosis that sticks, or can’t ever find one.

Continuing that process out in the dystopian American healthcare system is going to be ultra financially draining, and I’m sure super physically and emotionally draining as well. If you don’t have roots dug in too deep, I would consider uprooting to somewhere that prioritizes human care over profits (I hear Costa Rica is beautiful and has fairly cheap insurance for non-nationals, but there’s a lot of places with universal healthcare even for expats) and spend the next few years focusing on taking care of yourself and getting it all figured out. If you do have deep roots here, find a job that has good insurance and get the plan with the lowest out of pocket max. If you can combine that with a lower stress job, that also might help your health a lot, even if just your mental health.

[classical_Liberal]

Ahh Brookline, I am so sorry. Your situation sucks ass. I have some experience in this area.

You have been given, from previous posts, two equally relevant avenues.

The first can be summarized as, maybe the docs missed something. This is certainly possible. US medical care is basically a flow chart these days. If your condition falls off the flow chart, you need a super specialist to think outside the box.

The second is summarized as environmental sensitivity of some kind. Also possible, lives have been completely changed with behavioral and dietary modifications.

For the first, you have to narrow the field. Just like most sciences, MDs tend to have a very specified knowledge base when it comes to outlier conditions. Go to the wrong uberspecialist and they won't be of much help.

On the second note, do not forget environmental factor's. Yes, dietary is important and you should fast. If you see improvement bring back only one thing at a time. Personally, I would start with a carnivore diet in your situation. If fasting doesn't help consider other environmental issues. Where do you live? maybe leave your home for a week and see if anything changes. Maybe travel somewhere with a completely different climate for a few weeks. What type of clothes are you wearing, material wise. What products do you use to cleanse yourself. Think in this fashion to eliminate possibilities.

This is the best I can do to help. I wish you luck!

[WFJ]

OP.

US healthcare system is designed much like a car dealership repair service, identify symptom, treat symptom. This system performs well with acute conditions; specific cancer, broken bones, etc. but the US healthcare system is not designed well for complex multi-dimensional health issues.

I, along with friends and family members have struggled with similar health issues you described. My "cure" that worked for me is to find a location where people weren't struggling with my symptoms and move there, didn't figure this out until I was in my mid-30's, but better late than never. Moving would isolate the "environmental" factor, if conditions still persist after a move, the issues are within your body/immune system. My personal opinion is that anyone can endure extremely stressful and damaging environment for 6 months, after that time period, long term damage starts to accrue after this time period (different for every person) making recovery more difficult if not impossible regardless of interventions.

Another potential issue is just age. One can do the same thing everyday in the same environment from age 30 until 50 and enjoy the same results, but at 51 and beyond, result in a totally different outcome simply based on a decay in natural health.