Does your doctor sell you supplements?

[andyguitar]

I think a good doctor would apply western medicine when necessary and alternative medicine when necessary instead of it being either or.

Is'nt that what integrative medicine is?

 

[YippeeKi YOW !!]

Is'nt that what integrative medicine is?

Ideally.

And I think I've already mentioned what 'ideally' boils down to in this best of all possible ....etc etc etc ... or ect (every crappy thing), as you say ....

 

[Learner1]

I think a good doctor would apply western medicine when necessary and alternative medicine when necessary instead of it being either or.

Totally agree. That would be ideal, and makes much better sense than the sort of " ...my way or the highway ..." approach that so much of Western medicine prefers to take.

But we rarely get 'ideal' in this best of all possible worlds, which is why I'm so grateful for google and NIH research .... and these threads, some so laden with science-y knowledge that you can practically earn a research degree just reading them ....

Agreed, I've been helped both by conventional medicine and alternative medicine. And the best practitioners I've had, my naturopathic doctors and a functional medicine MD, have been fluent in both. And back to the premise of this thread, all sold supplements, which I found helpful, and picked and chose the ones I wanted to buy.

that the basis for them doesn't convince me that they're worth bothering to try.

You might be interested in the plan that Ron Tompkins has come up with, discussed on the OMF website. The first three items include:

1. Studies of inflammation in muscle, brain, and blood
2. Improving diagnostic technologies
3. Personalized medicine for ME/CFS

This speaks to personalizing medicine, as he states, and that the experts believe that this is a valid approach. With that said, it is ridiculous to suspect that some large random controlled double blind placebo study decided upon intervention is going to be useful on any specific one of us, without having any inkling of who we are genetically and what sorts of environmental factors, including infections, immune system status, autoimmunity, spinal structure and nerve status, toxicity of heavy metals, mycotoxins or something else, and a whole host of comorbid conditions. So there you are, a great reason to sit on the fence, and watch all this go by, never convinced that anything will directly help you.

Best wishes...

 

[andyguitar]

There is not much in integrative medicine in the UK. In the sense of Docs or other health practitioners using drugs and other things (supps/herbs). So it's either one or the others. But that might not be a bad thing. Could a medical doc also learn enough about herbal medicine to get it right? Probably not.

 

[YippeeKi YOW !!]

Could a medical doc also learn enough about herbal medicine to get it right? Probably not.

You're right-y-o. Given the amount of difficulty many of them have just keeping up with their own discipline and the medications therein, I think that's a given .....

But in fairness, there are members here that have had remarkable luck with naturopaths (sadly, I wasnt one of them ... mine turned out to be a huffed up little version of an allopathic Dr .... long, sad story) or with what sounds like truly excellent integrative medicine practitioners.

So there's hope ....

 

[Learner1]

There is not much in integrative medicine in the UK. In the sense of Docs or other health practitioners using drugs and other things (supps/herbs). So it's either one or the others. But that might not be a bad thing. Could a medical doc also learn enough about herbal medicine to get it right? Probably not.

There are many functional medicine MDs in the United States. Look for Mark Hyman as an example, who the Cleveland Clinic, one of the top hospitals in America, tapped to start their functional medicine program.

There are functional medicine practitioners in the UK, likely they are private pay and not your average GP but they exist. Unfortunately, most of us here in the US have to private pay for this care as well, as insurance does not cover the time it takes for the appointments or some of the treatments. However, many tests that they run, and many treatments that they prescribe, are covered by conventional insurance, and are likely very available in your NHS system.

The naturopathic doctors that I have had luck with are trained at Bastyr University in Seattle which is the top naturopathic school in the world. They are very science-oriented, and use conventional as well as specialty lab tests and prescribe both conventional as well as " alternative " treatments.

 

[YippeeKi YOW !!]

The naturopathic doctors that I have had luck with are trained at Bastyr University in Seattle

So was mine. He was one of the bigger disappointments I've experienced, possibly because my expectations for him were higher than for conventional Drs.

Like you, I have great respect for the Bastyr University. In this instance, however, it wasn't supported by my experience.

That's pretty much the point where I just effing gave the flock up .

 

[YippeeKi YOW !!]

They are very science-oriented, and use conventional as well as specialty lab tests and prescribe both conventional as well as " alternative " treatments.

There's a limit to the kind of Rx's that a naturopathic Dr can write, at least where I live, even tho they undergo more rigorous training and education than most conventional Drs. Most of them have to partner with osteopathic MDs or any other MD with a full range of Rx privileges.

 

[Learner1]

So was mine. He was one of the bigger disappointments I've experienced, possibly because my expectations for him were higher than for conventional Drs.

Like you, I have great respect for the Bastyr University. In this instance, however, it wasn't supported by my experience.

That's pretty much the point where I just effing gave the flock up .

Sorry you had a bad experience. There are bad doctors of all types. Though I've known some brilliant MDs, I've been utterly stunned at how little some MDs seem to know and his uncurious they are. I went to 3 cancer survivorship clinics asking for help with chronic fatigue, suspecting immune system problems and infections when it's well documented that cancer treatment can cause fatigue as long as 9 years after treatment, that immune function is compromised and patients have opportunistic infections, and they refused to acknowledge this or help me, even by running any tests. If it weren't for the help NDs gave me, I wouldn't have made do much progress.

There's a limit to the kind of Rx's that a naturopathic Dr can write, at least where I live, even tho they undergo more rigorous training and education than most conventional Drs. Most of them have to partner with osteopathic MDs or any other MD with a full range of Rx privileges.

Here they are limited, too. I don't believe they can write (or want to write) for opioids and benzos, but they've been able to prescribe me various hormones, naltrexone, Kuvan, B vitamin shots, antivirals, and antibiotics, in addition to "mito cocktail" IVs.

 

[YippeeKi YOW !!]

There are bad doctors of all types.

Yes. I seem to have run into at least one of almost every discipline. Dispiriting.

Though I've known some brilliant MDs,

I have, too. And one who was not only brilliant but immensely kind and empathetic. I miss him.

I've been utterly stunned at how little some MDs seem to know and his uncurious they are

I know, right? It's alarming how little they seem to be motivated by curiosity or the need to understand something new, at least to them. They frequently seem angry and hostile when presented with anything outside of their fairly reductionist understanding of the universe, an anger they often do very little to disguise, altho sometimes they can turn it into a sort of vague condescension which is often worse.

I went to 3 cancer survivorship clinics asking for help with chronic fatigue, suspecting immune system problems and infections when it's well documented that cancer treatment can cause fatigue as long as 9 years after treatment, that immune function is compromised and patients have opportunistic infections, and they refused to acknowledge this or help me, even by running any tests.

We;ve had some similar experiences. Anything I brought to a Drs attention was quickly dismissed, including an incipient case of what would immediately turn into raging shingles, brushed off as " .... a little acne ...", spreading rapidly up the side of my face from my upper lip to the outer corner of my eye. Chemo had to be stopped til the Valtrex kicked in. No apology. And like you, the fatigue, the opportunistic chemo infections, all the hallmarks of a collapsed immune system .... each was dismissed with a patronizing little smile.

In fairness, my oncologist was a genius and almost certainly saved my life, but there was a price on the other side. Another story for a different day ....

Most of the cancer support groups were tied to the hospital with the condescending, unconcerned Drs, and were dismal, depressing, and non-nurturing so not much help there. But I did find one grace note, recommended by a rescuing angel of a woman who I met in the hospital parking structure who was also a cancer patient. It was a recovery group in a lovely converted house that had been started by another recovering cancer patient that at least offered emotional help and comradeship, and warm and homey surroundings and I was deeply grateful for that.

Wow. I do clatter on.

The short version, and I probably should have stuck to that, is that I know what you mean, and I really, truly mean that.

Onward and upward, yes ???

 

[Wishful]

With that said, it is ridiculous to suspect that some large random controlled double blind placebo study decided upon intervention is going to be useful on any specific one of us, without having any inkling of who we are genetically and what sorts of environmental factors, including infections, immune system status, autoimmunity, spinal structure and nerve status, toxicity of heavy metals, mycotoxins or something else, and a whole host of comorbid conditions.

If you mean a treatment that works reliably for a majority of PWME, I don't think that's ridiculous. Yes we have personal factors that affect sensitivities and symptoms, but I do think there's a reasonable chance that there's a single--or at least small combination--dysfunction that causes ME, and which could be treated. Maybe it's as simple as one protein being in excess, inhibiting one RNA transcription, in one specific part of the brain, which has a cascading effect throughout the body, and which could be treated by the right chemical delivered to the right place. Several different factors triggered full remission of all my symptoms, so that seems to contradict the theory that it's multiple diseases and multiple personal abnormalities that all combine to form ME. Complex highly personalized treatments could treat multiple individual downstream symptoms and upstream sensitivities, without treating the root cause. The medical industry, both alternative and Big Pharma, would love that--selling multiple diagnostic tests and multiple daily treatments for life--and would hate having someone discover a core dysfunction that would be simple treated or cured.

 

[Learner1]

I had a lengthy discussion with Robert Naviaux at one of the conferences I attended. It was at the beginning of the conference and most people didn't know who he was, so I was thrilled to be able to catch him I really talked to him.

We started out discussing mTOR - as a cancer survivor, I was leery about the discussion here about stimulating mTOR, When I'm very aware that doing so can promote cancer. He said the concept was balance.

We went on to discuss the entire problem of ME/CFS and the various cell dangers that patients cells have encountered, including infections, mycotoxins, heavy metals, stress, etc.

He said that the way to get out of it was to reverse each of those cell dangers, and then looking at the chart in his cell danger paper about winter versus summer metabolism, one would want to move the various processes out of winter into the summer metabolism. And at that point, and only then, if someone wasn't better, then one could try suramin to kickstart the system.

I discussed with him the care that I was getting from my naturopathic doctor which included removing the cell dangers that he mentioned, and then working with the various columns in his winter/summer metabolism chart, using nutrients to manipulate the various processes. He very much approved of that approach and thought I would do well.

And, in time, that is what I've done. Using extensive lab testing to find out what my mitochondria were doing, what toxins and infections were affecting me, and gathering the data to be able to manipulate and normalize my biochemistry, including hormones, energy producing chemicals, antioxidants, amino acids, lipids, and other nutrients. And then, based on the data, using interventions to correct the problems found, in sequence, and encourage my body to behave properly. This included doing cranial sacral therapy, massage, prolozone, and extensive physical therapy exercises to heal my neck, back, and torn rotator cuff after my serious 2015 car accident which may have contributed to my ME/CFS. (Doing PT alone would not have been sufficient.)

And, as I've gone through this extensive process, I gradually been able to return to normal life, around the medical care I am still getting. Aside from an increase in function and ability to exercise, my adrenals seem to be working a lot better these days as evidenced by reducing to 1/10th of my original hydrocortisone dose, and my body temperature has normalized, when it ran around 96.5 for 2 and 1/2 years. I still have problems doing aerobic exercise, as my mitochondria seemed to have been damaged by chemotherapy, and I don't know if I will ever be 100% cured. And I realize that taking a magic pill to be cured would be much easier, faster, and cheaper.

But I also have learned that I have several genetic factors, that I am positive the majority of ME/CFS patients don't have, because I have seen how frequent they are in the population, and most patients do not have my specific health history. So, even if there was some magic pill that worked on most ME/ CFS patients I don't believe it would be likely to work on me.

I am not a believer in trying this intervention or that one after the other in isolation, and a random fashion based on when I hear about them from other patients. So many people try these things, which may be excellent interventions, but it may not be the right timing in their process, they might be missing other cofactors, or they might have genetic or environmental factors that make them less successful.

I am a believer in a comprehensive approach, looking at the body as a system of integrated systems, where manipulating one system may have cascading effects on the others. I've also learned that timing is very important, there were some excellent interventions I tried early on that I'll admit I wasted money on because my body wasn't ready for them and I needed to lay other groundwork first. And I've learned that one doctor is not enough. Even though my doctors have been brilliant, each of them has missed some things, each of them has knowledge that the others don't, and together, they've been able to guide me through a comprehensive process that works. I share all my labs with all my doctors, and things I learn from one I share with the others, and that is greatly improved my care and the outcomes.

In many cases, interventions have been tried based on what I've read in medical journal articles, from the ME/CFS researchers as well as excellent research on the mechanism of a particular intervention, or other medical problems that it is used on, and then we look at how that might be translated to ME / CFS.

There is a lot of blather out there on the web, and there are a lot of bloggers that have various agendas whether it's to sell product or influence thought. While there are a few places I go for information, those sources are well referenced, like SelfHacked, Green Med Info, The Iron Disorders Institute, or the HHV6 Foundation, but honestly, I prefer to find medical journal articles from all over the world, being very careful to look and see what conflicts of interest the authors may have, and then look at what they have to say. At first this was difficult, I just read abstract and conclusions and looked at the pictures, but I've also found that looking into how they did whatever experiment to determine whether it's valid for me, and the discussion is very informative. And if I read a lot of positive or negative on something, I always look for the opposite point of view or opposite set of data, because just as we've seen with this hydroxychloroquine brouhaha, even studies purported to having large amounts of data can be wrong.

So, I believe Dr Naviaux was right in his advice to me, and this seems to track with what Dr Prusty is saying, but though there may be an initial event and the innate immune system misbehaving, there's a cascade of metabolic derangement and mitochondrial behavior That happens, and it's rather random how it happens in each of us. So even if you were to fix the initial thing that went wrong you still have to deal with the metabolic consequences of the cascade of misbehavior.

So, that's why it seems unwise to wait for the researchers to complete their work and tie a big red bow around it before taking action.

 

[JES]

If you mean a treatment that works reliably for a majority of PWME, I don't think that's ridiculous. Yes we have personal factors that affect sensitivities and symptoms, but I do think there's a reasonable chance that there's a single--or at least small combination--dysfunction that causes ME, and which could be treated. Maybe it's as simple as one protein being in excess, inhibiting one RNA transcription, in one specific part of the brain, which has a cascading effect throughout the body, and which could be treated by the right chemical delivered to the right place. Several different factors triggered full remission of all my symptoms, so that seems to contradict the theory that it's multiple diseases and multiple personal abnormalities that all combine to form ME. Complex highly personalized treatments could treat multiple individual downstream symptoms and upstream sensitivities, without treating the root cause. The medical industry, both alternative and Big Pharma, would love that--selling multiple diagnostic tests and multiple daily treatments for life--and would hate having someone discover a core dysfunction that would be simple treated or cured.

This was discussed quite a lot in OMF's last year's big seminar. The OMF researchers did a panel debate where they discussed the concept of lumpers and splitters, where lumpers emphasize some commonality in ME/CFS patients, whereas splitters are more on the side of individualized approaches needed due to everyone's unique genetics. Among the OMF researchers, there was about a 50/50 split between both camps, which I found interesting. Ron Davis is obviously a believer in finding a cure that would work for at least a majority of ME/CFS patients, Maureen Hanson has the same view. Other new members of OMF like Mike Snyder pointed out that people with the same disease may respond differently to treatment, he brought up the example that a drug for diabetes or high blood pressure might work great in person X, but person Y may need a different drug even if they technically have the same disease.

I don't think ME/CFS is different from any other disease that it would somehow be more or less likely to share a common pathway. I reckon almost all diagnoses are more or less subjective in the sense that we categorize diseases based on a set of findings. Some people call medicine an art more than a science due to this.

Anyway, my point in this is, I don't see why we cannot necessarily treat ME/CFS as a single disease just like we treat Multiple Sclerosis as one disease even if we now know that people with MS have very different representations. That doesn't mean there aren't individual changes and pathways, which may cause a treatment to work differently on a different patient. This isn't a problem of ME/CFS, it's a problem of virtually all diseases. I think we can still find a treatment for ME/CFS just as likely as for any other disease. The reason why there isn't a treatment for ME/CFS today is primarily the lack of funding for biomedical research, almost all money and time has been spent on studying BPS treatments.

 

[Aerose91]

What is the deal with the tryptophan issue? Has this been proven? What if we have a normal IDO1 gene?
I have taken tryptophan plenty in the past but took it last night and, not sure if it's that, but I had a sort of crash in lyme brain and my already diminished ability to feel emotions declined considerably as well as increased spaciness and confusion. However, I also expended more energy than usual yesterday. I have no idea what did what. Any help is appreciated

 

[Wishful]

I think the reason TRP made my symptoms worse is that it increased production of neurotoxic kynurenines. 5-HTP didn't cause the same problem, so it seems very likely that the kynurenine pathway is involved, through IDO. I don't know whether dysfunction in IDO is involved, or if the problem is further down the kynurenine pathway.

 

[Aerose91]

That makes sense

 

[Mary]

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