What the H*** is Going On? I feel like I'm dying.

[Learner1]

Learner - Thanks so much the good information. It seems clear that to achieve any real success/improvement I'd have to be working with a Doc that some decent experience helping people with ME. Would you agree with that?

I think that having a doctor who is curious and can think in multiple tracks, and who isn't too arrogant to learn new things is essential. There is no cure or standard of care or even standard diagnostic tests for ME/CFS.

Part of this is because it's a complex, multiorgan system disease. Part is because there are a number of subsets of it with different triggers, complicating factors, and characteristics. We are all unique, not a bun h of identical widgets.

Therefore, a doctor who is capable of running tests on the immune system, endocrine system, nervous system, digestive system, circulatory system, etc. and creative enough to put together the puzzle of what's going on with you would be valuable.

In my case, I got a long way with 2 excellent functional medicine doctors, who look at tge body as a system of interrelated systems. They happened to be naturopathic doctors but functional medicine doctors can be MDs, DOS, DCs, or ARNPs. They got my endocrine system functioning batter and found a bunch of infections and critical nutrient deficiencies.

It became clear I needed more immune system expertise, and I saw a ME/CFS specialist who'd been a long time AIDS doctor and was uses to weird infections and broken immune systems, including both immunodeficiency and autoimmunity. I also found a dysautonomia specialist, a neurologist, who diagnosed and treated my POTS. And I'm seeing 2 mitochondrial specialists to see if there's anything else that can be done with them.

All of this takes my being organized with my records, my managing the doctors, figuring out when to see them and keeping straight who does what. The problem is tgat the specialists are quite scarce, very few exist who know enough to help us, and those that do are busy, so there's competition for their time.

I'm not one who likes, or even tolerates very well, the guinea pig experience. So between me and a Doc inexperienced with this disease trying to figure it out....well, I anticipate poor results. I just had 7 blood tests done by an endocrinologist and I liked her but could see she doesn't know much about how to help with ME.

I would tske a doctor who's malleable and willing to work with you and run tests you ask for over an arrogant know it all not willing to change their ways.

The good news is that there is a lot the researchers have found in the past 5 years. There are a lot of patients here who have been trying various tests and treatments. Learn all you can from these people and read. the studies for yourself. Undetstsnd what tests are available that might help you, how to correctly interpret them, and what treatments are out there. It csn be very powerful to bring your doctor an insightful article while saying, gee, does this apply to me? Could we test...?

No one doctor has all the answers. Even though my 2 main doctors are brilliant and think in 3 dimensions, they've both told me there are too many gaps in the knowledge and they're making their best guesses without being sure of outcomes. Yes, its scary, and I do ask about the risks, but id take their honesty and guesses over the numerous doctors I've seen who refused to go out of their comfort zone and help me but instead blamed me - the patient.

What type of Doc tends to have the most awareness of this disease? An immunologist? Thank you.

A good immunologist should. But I've been trying for over 2 years to find one with expertise at the University of Washington, but I haven't found one who understood my immunodeficiency, infections, and autoimmune problems. They are too rigid and think my problems are weird. But, some folks around here do have great immunologists who specialize in autoimmunity, MCAS, etc.

A functional medicine doctor would be my pick, followed by an internal medicine doc, rheumatologist, infectious disease doc, and a dysautonomia specialist.

Best wishes...

 

[Wishful]

It seems clear that to achieve any real success/improvement I'd have to be working with a Doc that some decent experience helping people with ME. Would you agree with that?

My experience disagrees with that. All my improvements (few as they have been) were self-directed or accidental discoveries. I think overall that dealing with the medical system has been counterproductive, mainly because of the disappointment (which counts as psychological stress). Maybe the experience would be less awful with a good ME/CFS expert, but I wouldn't be expecting effective treatment either. An expert might be able to suggest some drugs or supplements that have a slightly better chance of working than trying things at random, but not much better than reading this forum. I think the real benefit of a good expert ME/CFS doctor would be to identify associated medical problems that can be treated, or correctly diagnosing that you have something other than ME/CFS.

As for immunologists, I'd been to several, and none of them even considered the possibility that I had ME/CFS, and didn't give me any impression that they'd have been of any help even if I had an official clinical diagnosis of ME/CFS.

Hmmm, maybe a good ME/CFS doctor could provide some improvement from the placebo effect, if you believe hard enough.

Until we understand the underlying mechanism of ME/CFS, or someone discovers a treatment that works reliably on many victims, I don't see that there's much that a doctor can do for us.

 

[Wayne]

My experience disagrees with that.

Hi @ Wishful, I could have written your entire post myself, as my experiences and lessons learned mirror yours. Thanks for writing out my story for me!

 

[Wishful]

Maybe we had the same doctors.

Phoenix Rising just seems to be more helpful than the medical system. The internet, with PR plus access to research papers, has been far more useful to me than the local medical clinic.

Maybe the best ME/CFS doctors read this forum and apply what they learn here.

 

[GlobeGirl]

My experience disagrees with that. All my improvements (few as they have been) were self-directed or accidental discoveries. I think overall that dealing with the medical system has been counterproductive, mainly because of the disappointment (which counts as psychological stress). Maybe the experience would be less awful with a good ME/CFS expert, but I wouldn't be expecting effective treatment either. An expert might be able to suggest some drugs or supplements that have a slightly better chance of working than trying things at random, but not much better than reading this forum. I think the real benefit of a good expert ME/CFS doctor would be to identify associated medical problems that can be treated, or correctly diagnosing that you have something other than ME/CFS.

As for immunologists, I'd been to several, and none of them even considered the possibility that I had ME/CFS, and didn't give me any impression that they'd have been of any help even if I had an official clinical diagnosis of ME/CFS.

Hmmm, maybe a good ME/CFS doctor could provide some improvement from the placebo effect, if you believe hard enough.

Until we understand the underlying mechanism of ME/CFS, or someone discovers a treatment that works reliably on many victims, I don't see that there's much that a doctor can do for us.

Wishful - Thanks for your input. Although I have not been as dialed-in to everything ME/CFS, in the last decade, as many of you have been (I find it too depressing and a giant maze leading to, mostly nowhere) what I have concluded is basically what you wrote. But, agree that internet sources have been VERY useful.

According to the directories on the ME websites we all know about there are no "experts" in my area. So, I believe my plan will be this, starting with my endocrinologist:
1) perform whatever tests might show undetected infections
2) determine any important nutrient deficiences
3) continue to evolve my diet, already pretty good, to even cleaner and more nutrient dense. Sugar, yeast, gluten and packaged foods down to the bare minimum.
4) heat intolerance issue MUST get substantially resolved. It's been brutal! I did get a possibly important clue about this today. The endo Doc's assistant told me that many of their patients with heat intolerance got some significant relief from a dermatologist. Their problem was more skin related. Hhhmm, I've had a common skin condition since my late teens called: tinea versicolor. It's a fungus based on yeast on the skin. It goes pretty much dormant in cooler months and flares in hot/humid conditions with a red, splotchy and itchy rash. You can mostly control it by applying zinc-based lotion. But, given I now live where the summer months are a swamp, this could have contributed to my horrendous problems this season.

Btw, I highly recommend wearing a cooling belt outside for anyone who also has heat intolerance. They help alot!
https://www.amazon.com/Inerzen-Ther...4881463&sr=8-4&keywords=cooling+belt+for+heat

 

[GlobeGirl]

I think that having a doctor who is curious and can think in multiple tracks, and who isn't too arrogant to learn new things is essential. There is no cure or standard of care or even standard diagnostic tests for ME/CFS.

And I'm seeing 2 mitochondrial specialists to see if there's anything else that can be done with them.

A functional medicine doctor would be my pick, followed by an internal medicine doc, rheumatologist, infectious disease doc, and a dysautonomia specialist.

Best wishes...

I appreciate you taking the time to share all that! I developed a plan to pursue, see above.

The mitochondria aspect is very interesting and is a big part of what Dr.Terry Wahl's speaks about related to her MS. I'm reading her book right now about diet, nutrition, feeding your cells, etc.

I also like the idea of a functional Doc giving my situation a thorough review. Will post anything I learn of real value!

 

[Wishful]

None of the medical tests the my doctors did showed any significant abnormalities. Two that I arranged myself (cytokine profile and kynurenine/tryptophan ratio) showed abnormalities, but nothing the doctors were familiar with, so no help there. I had a toxicology test done: again, no significant abnormalities. ME/CFS just doesn't show up on standard tests.

Tests to rule out other causes for your symptoms are a good idea. I didn't find nutrition to be a significant factor in my symptoms: super healthy diet was no better than nothing but white rice for months. Learning which foods worsened my symptoms was useful, so I could avoid being worse than baseline.

Can't help with heat intolerance, other than to point out that there are cooler places to live. It was 2.5 C a couple of mornings ago here (Alberta foothills). I wear a fleece jacket most mornings because it's that cold. I expect frost in the next few weeks. Ahhh, coolth.

 

[Learner1]

kynurenine/tryptophan ratio

High kynurenine could be low B6. Or low tryptophan could be gut dysbiosis. Or you could be burning aminos for fuel. Looking up what your doctors don't know can be quite helpful.

 

[Wishful]

Actually, the elevated KYN/TRP ratio I expected turned out to be abnormally low. When I got that result, I dug deeper into the science and realized that kunurenines don't cross the BBB easily, so the serum test wasn't much use. Maybe it meant that my microglial cells were decreasing serum TRP. A CSF sample might have shown a much different ratio, but it's not worth the effort to try to get that done. I'm pretty sure I don't have problems with my TRP level; it's the microglial cells working abnormally.