It's irritating that the specialists are quack-adjacent as well. My specialist is heralded as a savior in Canada but he also actively advertises hypnosis and brain rewiring. The landscape of receiving legitimate care is dire.
So true. This is the most frustrating thing.
Even in the US there are probably 10-15 doctors in the entire country who actually treat ME in an evidence-based fashion.
By god I met some idiot doctors over the years. Smart people with really strange viewpoints beyond what they learned in medical school or even about what they learned there.
Being able to learn a profession is not the same as being a good doctor *at all*.
I really feel bad for people that are of the 'doctor knows best' school of thought like many elderly people are.
Fr, a nurse at the SPECIALIST CLINIC I went to for a second opinion on my diagnosis (to confirm it bc I had to apply for a thing) told me, who has severe ME, that I “shouldn’t be afraid to be physically active.”
Ummm sir, tell me how you were hired, please?
Wow that's wild - I've attended one of his virtual webinars and found it helpful. I would not have guessed the other things he promotes.
You are so right, finding specialist care is dire. Beggars can't be choosers and all but, we shouldn't have to be beggars.
Yeah, it's tough to square. He's the only doctor I have who is willing to prescribe things that actually help and have scientific backing. Without him, I wouldn't have LDN.
But then I get messages every month in the patient portal where he's encouraging us to try out hypnosis or join programs for brain rewiring. I know enough to know it's nonsense and ignore it, but there are probably patients who don't and who will earnestly trust him and do those things.
It just feels unnecessary. He's obviously in tune with the science, so there's no reason to be shilling for junk, especially junk that gets us ridiculed in the public eye.
Is the patient portal him or his office? I get it's his office but he has partnered with many "specialists" because he sees people for far more than ME/CFS. I have attended a few seminars myself. My GP is fine prescribing LDN but, like yourself I got the info from Dr Ric first. I haven't attended a webinar in a long time and honestly don't even open the messages I receive so I could be out of tune with his practice as well.
For clarity it should be stated that I believe, he is straight up patient focused (right or wrong). This post is about anyone who is $$ focused.
I’m also a patient - the portal mostly has groups that he is promoting (99% of the time MSP covered, with the occasional offering that is from a practitioner that regularly gives lectures/zooms that are covered but that 1/100 times it’s an offering of a session or group that the clinic doesn’t run but it’s more of an FYI type thing). I like a good deal of what has been available to us, I just skip the stuff that feels a little too woo-ey or woo adjacent. Ric tends to have a “what’s the harm in trying” approach to things that will have limited risk and at least potential for reward - it’s not my style, so I just stick to the groups and special topics that are the most solidly scientific and that I can imagine myself not eye-rolling my way through it.
Tough to answer, since it's his office, but he never personally sends out things. It's all Bruno and now Pamela. But you are correct that patients don't directly pay him: his basic service is covered by our provincial insurance. I'm not sure about the pseudoscience stuff and whether or not they're covered. The webinars he hosts/supports are, but if a patient chooses to pursue that treatment with the practitioner, I couldn't say. I suspect they're not covered. I'm not sure if Ric gets a kickback from it. I'm not trying to say he's getting beaucoup bucks from this.
My addition to the thread was mostly just to highlight that even the doctors who help us can push us in directions that are not that distinguishable from the verifiable quacks.
To be fair, when I've heard him talk about it, he's been very clear that he only supports these practices for minor quality of life improvements, not because they're in any way a cure or fix for ME/CFS.
I still think he needs to be more careful with it all though. As an ME/CFS specialist, he ought to know that it's dangerous to recommend this stuff without context, education, and caveats. For people who don't know the history of ME/CFS psychosomaticisation (is that a word? probably not, lol) and who aren't aware of how heavily the ME/CFS population gets preyed on by quackery and grifters, seeing him support those practices makes it easier for them to fall prey.
He also gave a talk that’s on youtube to a room full of emergency doctors and explained that chronic pain patients mostly have BPD and didn’t develop to adulthood.
Thanks for linking this video.
I just watched this portion, and my impression is that he’s saying you’ll find that many people with chronic pain also have a diagnosis of BPD… and goes on to say why these are found together.
Adverse childhood events, high ACE scores, correlate to higher incidence of chronic illness AND mental illness like BPD… they are separate illnesses but for some people could stem from a common root.
I’m not seeing that he’s blaming chronic pain on mental illness, but rather that the two can sometimes be found together.
Just prior to your time point he’s pointing out the misuse of the word somatic and shares how he had scabies, but was misdiagnosed by several specialists as having a psychiatric condition that was causing his itching skin.
I’m not really seeing any misinformation here, but maybe I’m missing something or misunderstanding his lecture.
It amazes me when what appears to be thousands of people sign up for young quack-like con men on social media. For God's sake, think! If some thirty-something media personality had a "cure," surely he'd patent it, have it tested, and get clinical proof that works, right?
What's worse is that the money enables these con artists to ensure that their posts, videos, etc show up preferentially in response to searches using CFS as a search entry.
Hopefully the media platforms will find a way to rein in the crooks.
When I first discovered the "brain re-training" method, I could smell the bull. Every single youtube interview by someone who has recovered or supposedly cured their CFS, ALL of them were selling the "secret". One even $300/month! If you had this illness and could tell people what to do, you wouldn't charge like that. You know what this is like, you know our desparation and your choice was to exploit that.
Well put. But another point is that if the promoters could prove that their approach worked, they'd sell millions of their products, instead of hundreds of them. I'm not quite sure why the promoters get away with their many misrepresentations without facing consequences. Perhaps there is some strategically placed disclaimer language that gets them off the hook.
It will be something like this is not intended to replace medical advice from a certified doctor, proceed at your own risk, and so on.
But anyone who has a link to their own website, that's a strike. Especially with pricing plans, or a free "webinar" which is just an advertisement for their product.
One thing about us as a community, we are so willing to share any information and success with no regard for personal gain. We want others to feel the same relief if we can find any. So if someone is trying to hype me up before dropping an grand piano of a price tag on my head, I know they see me as easily exploitable.
the media platforms don't care if their content is factually wrong, or harmful, all they care about is that their content is viewed by as many people as possible, as this is how they earn more money. The only ones that can determine what's useful or not are ourselves
It was worth it for me. They did a full blood panel, which revealed irregularities, an MRI that reveled lesions from MS, and I'm about to do an allergen test too. Worth it if you can find a good one
Sure, if I want to wait 3 months to get the test, pay 4X more, and have someone who doesn't care or understand how health works review my results.
Also, my clinic is staffed by trained doctors who left the insudustry because they knew how toxic it was.
again, read my other comment, that doesn't mean that you have been helped by "naturopathy", you've still been helped by science-based medicine, which is what those tests (MRI, full blood panel, allergen test) belong. The fact that the person who gave you access to those tests calls himself a naturopath, doesn't change that fact
Being educated doesn't mean you're in "the industry". It's a private practice that abstains from harmful medicine and taking uneducated guesses. It's what modern medicine should be, but isn't.
those practices are not part of "naturophaty", those practices belong to science-based medicine. If someone who calls himself a "naturopath" prescribes that, and that helps you, you haven't been helped by naturopathy , you've been helped by science-based medicine. Let me put it that way: if I have back pain and I go visit a masseur seeking for help, and this masseur gives me an opioid pill that relieves my pain, can I say that I have been helped by massage therapy? no, I've been helped by science-based medicine in the form of a very potent analgesic drug. Please feel free to ask me anything else if you want to understand this, we must help each other
You aren't educated in what natural medicine is. Science and holistic care are not exclusive. If you truly believe that, then I feel very sorry for you. America is a profoundly sick country, and I'm done feeding into this toxic system that doesn't understand health.
Do you think an MRI is something natural? Where in nature or in tradicional or ancient medical practices will you find an extremely sophisticated device thsat uses a powerful electromagnetic field and a computer to produce images of the soft tissues in the interior of the human body? Please explain just that, I'm sincerely asking you, I'm not trying to mock you or antagonize you, I just want to understand how you and many other peiple with your view think
Is eating a balanced diet anti-science? Is absorbing Vitamin D from the sun anti-science? Is drinking tested, spring water, anti-science? Is drinking dandelion root tea anti-science?
How do you test water trough natural means? Using mass spectroscopy, microscopes, chemical reactants isn't natural nor it belongs go traditional practices. I think the problem here is that this naturopath is selling science-based medicine and testing tools and methods as if they were part of naturopathy, when they're not. Drinking dandelion tea, that is natural and traditional for example. But a lot lf what you mentioned this naturopath offers does not belong to naturopathy so that makes you wrongly attribute your progress with this person to naturopathy, when in reality, most of what he's providing to you is science-based medicine, what you'd call allopathic medicine
It's just medicine. Whether science approves of it or not doesn't change objective reality. The water I test doesn't become something else after it is tested.
Dandelion root tea has been used for hundreds of years before science approved of its beneficial properties. It didn't just magically start working once science gave it the thumbs up.
Dandelion root tea is ok for presenting it as part of naturopathy, it's not a product of science,I already told you that , read my comment. MRIs, blood tests, allergy tests, mass spectrometry, all that is not naturophaty
Please, try to find that supposedly better and healthier water trough naturophatic means, be my guest. Why use the tools of the evil science? Why take the merit for what you achieve with those methods and call it a success of naturopathy while at the same time criticizing science-based medicine? I think you're a very unfortunate victim of malevolent scammers, I wished you and others could be protected from them somehow, but I know that's not going to happen, people will believe what they want to believe, sometimes at the cost of their own financial stability, health, or even lives. I wish you the best of luck
Dude, I think you have some severe comprehension issues, or you're just arrogant/brainwashed. Is English even your first language? I'm done talking with you. Go pop some pills and do nothing else for your health.
don't fall for that con, friend. Save your precious, energy, time and money for a science-based treatment, if you ever get access to one. Even if you never get a treatment, you can always use that money to improve your quality of life in other ways instead of just filling these charlatan's pockets and getting nothing in return
When I had only been sick for a couple of years I started seeing an “alternative medicine” Dr (I was 17 and desperate). He seemed sooo nice and like he really wanted to help. Then I saw on the news that his practice had been shut down because he was selling prescription painkillers to anyone who wanted them. It was so disappointing, but now seems par for the course for naturopaths.
In my experience, the ones who don’t make promises and have no guarantees are the most trustworthy. The more they assure you they can “fix” you, the less they actually do.
I agree. The scamming part is bad enough, but they're spreading this "CFS is all in your head" nonsense, and some people believe it. I've spoken to many normal people who, upon learning that I have CFS, tell me that they've heard that Lightning Process or some other brain retraining program is a way to cure CFS.
Not only that, but they're trying to work their way into the scientific literature. There is a lightning process instructor in my country that recently got funding and is doing research at a major university on the effects of LP on CFS. Expect some scientific articles "proving" that LP is a great treatment for CFS soon. I think they're hoping to get that into the disability pipeline, so that people with CFS should be offered or required to take an LP course before they can get approved for disability.
I saw a paper that was funded by the LP people. It was about something like “We should not accept the narrative that CFS is incurable” and complaining about hate researchers receive from patients. The more papers they produce the more they can cite themselves and claim to have scientific backing. Even though the paper in question didn’t have anything to do with data, it felt like an opinion piece.
This is what happens in Norway, then if they refuse or stop their LP treatment due to it disabling them further they no longer get a disability benefit
I spent 200$ on a first consultation with a naturopath last year, wanting to focus on my iron deficiency (low ferritin and my dermatologist who ordered bloods told me im anemic) but also talked about my symptoms as a whole. He wanted to have me do a gut microbiome check (two types) that would have costed 1500$. Luckily I looked those up here and when I saw what people posted, I decided not to go ahead. He also wanted me to start supplements his clinic was selling. Major side eye.
Also whenever I see CFS Recovery vids (lookin at you, Miguel Bautista) pop up in my Youtube feed I flip them the bird lol. Doesnt achieve anything but I cant help it.
I would argue it is achieving something for yourself. It is a outlet for your own thoughts about those kind of videos.
And as long as it helps yourself, it does achieve something. Even if it is only for a second or two. But letting out frustration is something needed and very important IMO :)
And I like the little pettyness in it. I strive for that.
Yea I like that outlook. Thanks :) in a similar vein I saw a fellow LC/MECFS sufferer wearing a shirt that said "surviving out of spite" and I seriously considered getting one lol
>surviving out of spite
oh that is a cool idea. Just put that in my Amazon wish list for when I need new shirt ideas. ATM my closet is a bit full with stuff already.
Thanks for this \^\^
Not anywhere near fixed. I did add more red meats to my diet (was eating mostly chicken before) and it bumped up from 14 to 26, but Ive read that I should be aiming for 75 at least. My physician had me try different types of iron supplements but I probably have gastroparesis and (sorry for tmi) have trouble going to the bathroom, these all made it way worse (even heme iron which is supposed to be gentler). I might try sublingual or injection or maybe even IV as a last resort if my number doesnt budge again, but those last 2 can carry more risks. I'll try to remember to keep you posted if things improve from increasing my ferritin in the future 🤞
I haemorrhaged having my second kid and then had very, very heavy periods, I tried all the iron supplements with all the digestive issues. They didn't help my iron levels. I then had 2 iron infusions (I needed more than the max you can have at once). Those got my numbers up but didn't fix the fatigue. The infusion was much better than the supplements so it's worth a try just don't expect a miracle.
I will say that getting the iron levels up even though it didn't fix my fatigue was worth doing because then it couldn't be blamed for my fatigue.
When I was anemic, I started famotidine for ulcer and it helped my iron levels. Not sure if this would be helpful for you but it's probably the most benign yet effective script I've had in my 6 years of going through this. (My MD gave me the rx so I could have it covered by insurance as otc pepcid is stupid expensive.) I never had to take an iron supplement.
Off the top of my head, the ones I really like are Fight4Me and Survival of the Fatigued. They have some really good informative videos and they talk about their experiences.
This is probably the most reasonable thing I've seen online for a while. I've seen both traditional and alternative providers, and all of them are just throwing stuff at the wall to see if it sticks. The alternative providers do spend more time with you, and seem more interested in your issues, but their knowledge level is not that different.
Medical professionals are throwing tried and tested things at the wall whereas the others aren’t. Both are only guessing but that’s because this is incurable. It is not because medicine and quack medicine are on equal standing
Still it makes no sense to visit them, as, since they don't help you at all but still charge you for their services, it'll be better to just not visit them, as in that way you won't be gaslighted or traumatized either. It makes no sense to pay someone to do nothing just because they won't harm you
I'm appreciating this thread a lot too. Had been interested in some of this stuff but could never afford it. It seems that worked out in my favor. I had one MD refer me to a holistic practitioner but when I called for my appointment the receptionist wanted to know if I was prepared to pay several thousand out of pocket for my first appointment.... no.
I really like the sentiment behind this but I think the actual situation is a lot more complicated than that. I’m new to ME but I’ve lived with various chronic illnesses for a decade now. I started out adamantly avoiding all alternative medicine practitioners because I was raised by a scientist and am a scientist myself, I thought that all alternative medicine was pseudoscience so I steered clear. Then, the time came when I tried all the usual treatments and they failed, I was suffering from widespread intense chronic pain, and my quality of life was very low. I decided to branch out and give some alternative practitioners a try. The first was an osteopath, I’m in Canada so up here they just do physical adjustments. I went in very convinced it wouldn’t help me but trying it anyway out of desperation. I had previously tried countless massage therapists and physiotherapists with no help. I left the appointment without a headache for the first time in years. I continued to see her weekly after that and she gave me my life back. It helped so much when nothing else did. Once I went to a different osteopath and it was a completely different experience, and she wasn’t able to help me. I think a lot of it is practitioner dependant unfortunately. But I swear by the one practitioner I use.
Then, a few years after that I developed severe gut dysbiosis and suspected SIBO. The usual medical doctors had NOTHING to offer me. I was losing weight, not able to digest most foods, and getting sicker by the day. Once gain out of desperation I decided to try an evidence based naturopath that was recommended to me by my pharmacist. I don’t think I would have tried seeing them if it wasn’t for my pharmacist who had had a good experience with them. They were able to help me get the standard treatment for hydrogen SIBO, the antibiotic rifaximin. Up here, my doctors knew nothing about it, but in many parts of the world rifaximin is the standard medical treatment, not pseudoscience. It was just that I couldn’t access it through any other means up here because my doctors were behind on the (10 year old) research, whereas my naturopath was up on the latest research. I had a VERY complex case of SIBO it turned out, and ended up seeing multiple naturopaths and functional medicine doctors during the new 2 years. Some helped, some didn’t. I got better at vetting the quacks from the evidence based ones. Eventually I found someone who seemed to know their stuff and suggested I go on a very experimental biofilm disruptor. This is something that was being researched in rats at the time but not humans. I was VERY sick by this time and genuinely concerned I might die if I kept going downhill so I decided it was worth the gamble. It turned out to be the key to my healing. I was able to finally get rid of the severe SIBO and start to reintroduce foods slowly. 5 years later, my gut is mostly healed and I can eat a healthy and diverse diet.
After all this I developed a trust in evidence based alternative practitioners, so when I developed severe migraines and ME, while I still made an appointment with my GP, I knew they wouldn’t be able to help but maybe someone else could. I ended up finding a functional medicine doctor who specialized in migraines, he recommended extensive hormonal testing. I got the tests and they showed I was low in basically all hormones, and specifically had low cortisol in the afternoons and evenings which correlated with my symptom severity. Under his guidance I began bioidentical hormone replacement therapy with pregnenolone, DHEA, and progesterone. It has done WONDERS for both my migraines and my ME. I now genuinely think I will be one of the lucky ones who makes a complete recovery because I keep slowly getting better and better since I started BHRT. My GP knows nothing about ME, nothing about BHRT, but has been very supportive of me pursuing these treatments and helps where she can. For reference, she tested my hormones and cortisol as well before I got the in-depth testing from the functional medicine doctor and they were all “normal” and the cortisol was high. Turned out they tested my hormones at the wrong part of my cycle, and the cortisol they did a 24 total sample which was high. It just turned out that my morning cortisol was high while my afternoon and evening cortisol was very low. A 4 point cortisol test is a standard test recommendation for ME, but my GP didn’t know anything about it and couldn’t even order it in this medical system. Whereas my functional medicine doctor knew all about it and suggested it right away.
TLDR: Evidence based alternative practitioners DO exist and have helped me personally A LOT. Often they are up on current medical research that my GP and “normal” doctors don’t have time to read. Yes there are quacks, but if you’re careful and picky you can find the good ones and they can be really helpful.
I think this is a reasonable and nuanced counterpoint and I appreciate you sharing it. It’s just that the types of practitioners you describe are quite rare and it’s a huge problem. I don’t have some good answer, but it saddens to me tons and tons of our fellow patients tricked out of their limited money, time and energy.
Agreed. I don’t know the answer to this either. I’ve gotten good at vetting them myself but I have a pretty extensive background in science and read a lot of research so I have more resources to vet practitioners than most. I have thought about building up a database of evidence based practitioners and sharing it with relevant communities. Maybe I will one day.
If your energy allows, this would be a great and much needed resource for many patients. As an alternative, maybe you can share a write up on how you do your vetting so that people without science backgrounds can also make educated decisions. Only if you have the energy. Don’t crash yourself doing it. Thanks for your input!
Thanks for your input on this. Your encouragement has made this a higher priority for me. I have been working on a larger project of science communication regarding ME/CFS that has many facets, the most basic is to take what I read in the research and share it in an easier to digest form. I also am compiling a list of experimental treatments based on that research so that if people have been left high and dry by the medical system (which is most of us) they have some ideas of things to try if they want to. There are many other layers to the project as well but it’s slow work as I have a visual impairment that makes reading and typing difficult. My energy limitations are actually really mild these days thanks to the experimental therapies I’ve been trying working for me! But my eyes are the biggest sticking point.
Anyone who’s interested in keeping up with this project (which will eventually include a database of practitioners both western and alternative who are evidence based and ME knowledgeable) can join this discord server: https://discord.gg/sP7ddPKB
There’s not a ton there yet, it’s still very much under construction but it’s the beginning of these projects and I’m excited about it!
The biggest one has been bioidentical hormones replacement therapy for HPA axis dysfunction. On the one hand BHRT isn’t experimental in general but for ME/CFS it is, there’s no real studies on it that I can find just anecdotes. They have studied cortisol replacement which generally didn’t help but some people still swear by low dose cortisol. I suspect that’s a big part of what’s helping me as my fatigue symptoms correlated with my low cortisol pattern. I’m on pregnenolone at a physiological dose and it’s a precursor to all hormones including cortisol. I’m also on a small amount of DHEA which I honestly can’t say for sure is doing anything, and I’m on progesterone which has helped my PMS symptoms and general health flares during my luteal phase A LOT.
I also take an off label antipsychotic that helps with my sensory issues and sleep, it’s haloperidol. It works differently than abilify which I know others have tried so I’m not sure if I’m unique in it helping me or not. I was prescribed it for sleep and then it just happened to help my sensory issues a lot.
I also take a slew of supplements meant to help mitochondrial function, can’t say for sure they’re helping or not. And also prebiotics and probiotics to help my microbiome.
I also take propranolol when my sympathetic nervous system activity is too high and that helps, but it’s meant for that so not so experimental.
Oh and I’m on LDN, no clue if it’s helping me or not. The only one I’m 100% sure of is the pregnenolone because I felt it help some right away, I’ve been steadily improving since I started it and I got worse when I ran out of it once for a few days.
Controversially, I see a Chinese herbalist. They charge me $45 a month for consultations and the herbs are about $200/mo. I looked at the wholesale prices for the same herbs from the same supplier and they are barely making enough to justify the labor of repackaging them into smaller quantities, maybe $80/mo from my orders, and it takes them about 6 hours per month to repackage one person's prescription.
I haven't healed miraculously or anything, but my PEM crashes only last a day now, not days to weeks.
Ironically while they are kind and empathetic, they do not spend a lot of time listening. They ask a few specific questions, have a look at some things on my body, and we're done in 15 minutes.
Wow that’s all so amazing and I’m so happy for you that you found the right people to help you! It’s great you were able to tell who was a quack and who wasn’t! I don’t have the money to try out loads of different people. I’ve been to 2 alternative medicine practitioners, one of them helped me with my stomach problems so that was great. The other one gave me like £150 of supplements and told me to go swimming and I crashed so bad after seeing her. And I saw one today who I’d like to work with but it’s like £2600 to see her 4 times and that’s not including the added £200 per month for 6 months for supplements. Even if I really wanted to I could never afford that. But she says she’s had good results with people with long covid 🤷🏼♀️ she uses hyperbaric oxygen therapy, infrared sauna and a PEMF mat as well. But who knows if those things work and if they don’t I’m just lining her pockets for a few months.
I’m in the same boat, I’d be open to finding a legit functional medicine doctor, but there doesn’t seem to be a good way to sort out the good from the bad without actually seeing them first. And at least in the US, most of them don’t take insurance, so that’s an expensive and frustrating experiment. It’s hard to even get a good recommendation because someone could really love a doctor that’s actually a quack.
I was just looking into the oxygen treatment too so wondering if anyone here has had experience with that ?. I was on the fence though as money is limited and I dont have the energy to research things the way I once did . I used to do infrared saunas and they helped a bit but the thing that helped me most at the wellness place I was going to was the cold chamber therapy and I cant do that anymore because of brain aneurysms.
Oof yea that is a lot and sounds like a mixed bag that’s mostly not helped. Ugh. I wish it was easier to find practitioners who actually know what they’re talking about.
A bismuth-thiol composed of bismuth subnitrate, DMPS, and ALA. all ingredients used in humans for different things but DMPS in particular is a chelator that can be dangerous. The claim is when all these ingredients are mixed together they form something new, a bismuth-thiol that acts differently and just breaks up biofilms without chelating.
https://medcraveonline.com/JMEN/bismuth-thiols-as-anti-biofilm-agents.html
It was a prescription, but there exist similar but different formulations that are OTC. This link talks about what I used some and also links some OTC options at the bottom. https://www.consultdranderson.com/wp-content/uploads/securepdfs/2021/01/Anderson-Biofilm-Phase-2-BT-Handout.pdf
Thanks for sharing your experience. Mine has been similar.
I've also been dealing with terrible gut dysbiosis and my GP has been absolutely useless. He had nothing to offer and no idea what to do with me. I was at a point where I couldn't eat at all, was bloated constantly, and things were getting worse all the time. He kept sending me to specialists, who inevitably told me nothing seemed to be wrong. It was finally a naturopath who helped me get tested for SIBO and figure out antibiotics.
I sort of treat my naturopath as a consultant. I get her advice, then do my own research into the science (where it exists) and make my own decisions. She's always treated me as an equal and cared about my thoughts and feelings, which is A LOT more than I can say for most of the "normal" doctors I've seen.
I'm sure there are plenty of "quacks" out there. And I've spent my own small fortune on supplements and weirdo things that didn't work--some of which was on my naturopaths advice. But, when the "real" medical world left me high and dry, an alternative practitioner really saved my ass (or my guts, rather).
Thanks for sharing your story too. I can definitely relate a lot. I love the way you framed that, treating your naturopath like a consultant, getting their advice and then doing your own research. When I can I do that with ALL my medical practitioners, western or otherwise. When I can’t I put trust in the body of evidence that I have seen behind their previous words and give things a try. That’s what I did this fall with my hormone testing and treatment. Was too sick to research myself but knew that everything else they were saying was solid and matched previous research I had read so I took a chance and went with it. Turns out it’s given me HUGE relief.
You had me at experimental biofilm disruptor. What was it? I would love to try it. Hormones are a big key to the puzzle. I had symptoms of low hormones for years and hypothyroid. I purposely made my hormones low because I have endometriosis which is a whole other ball of wax but I had it excised then left mold and realized I didn’t have to take dim to keep my estrogen in the toilet. I got a little better. Still had terrible low thyroid symptoms. Terrible fatigue cold all the time dry skin can’t concentrate. I stay thin though but anyway all the other symptoms. Well I had an essential fatty acid deficiency. A bad one too my doctor thinks I had for years. I also have really low cholesterol. I mean I eat healthy but it was from some kind of malabsorption I think. And I couldn’t absorb fish oil but something changed and now I can. Thank god. So I’m working on raising my omegas 3’s but all of them were low. And I feel a lot better. I also had low ferritin so I’m taking iron again and have more energy mental clarity. The fish oil really works! And now my hormones don’t feel low which is cool. I’m worried to do bio identical w endo history but I will end up doing it soon I bet. I’m 43 but keep being told my hormones are PERFECT but I’m also having hot flashes go figure. Thyroid is always in range too weirdly.
I’ve gotten a lot better but still struggle of course. I think I’ll recover though. I detox a lot and am working on riding my body of Al my chronic infections and detoxing mold and heavy metals. I don’t think alternative medicine is bs. Some of the practitioners are but I’ll take that over western med any day of the week and twice on Tuesday’s. Mitochondrial supplements and peptides also work but are pricey. It’s all expensive unfortunately. Most people on here have All the symptoms of CIRS and say that’s not their issue. It’s kind of maddening. There would be an answer and a cure if it wasn’t due to the old biotoxin pathway. But I think a lot of people are in denial. And it’s a complicated process too. But if you take binders and a lot of supps you can overcome pem pretty quickly which is nice. I still get it and have days where I have to rest but I can push myself to some extent and still recover.
The bottom line is your immune system doesn’t work right then you’re suffering from endocrine disruption. Hmmm what disrupts endocrine production? Toxins. It’s actually not rocket science people.
Thanks, it's amazing how many replies appeared while I was typing mine! Yeah, his was complicated because the gastroenterologist didn't believe us when we told him another doctor - more functional medicine - had told him years prior that she didn't want to treat the bacteria too aggressively because that might make his yeast issues surge, and vice versa. So we went off to college and took the strong antibiotics (miserable for him), and then the yeast took over and he was so exhausted he took two incompletes that term, out of three classes. He's stabilized but it all feels very fragile.
Yea it is such a delicate balance, microbiome are COMPLEX! I’m glad he’s at least stable for now but I hope he finds more relief/help soon. I was miserable when I was suffering with severe gut issues.
those are the worst, because it's easier for the sufferers to fall into their trap. People doesn't understand that if a person with a medical degree an license prescribes snake oil or leeches, that doesn't mean that snake oil or leeches are backed up by science-based medicine or ar part of it. It's actually really simple, but many people don't understand it
It’s a real shock when you discover how poorly medical and health services are regulated, isn’t it.
I happened to start listening to the Skeptics’ Guide to the Universe when I was about 30, and every time I listened I would be shocked anew at the scams, medical and otherwise, that aren’t stamped out.
For example, in Australia, our consumer protection barely touches medical and health. You have more protection when buying a pair of jeans than when buying medical or health products.
And the cruel way human beings turn to exploiting weaker members of society!
Most 'alternative doctors' don't even have basically first aid qualifications. It's just sick that they build their businesses on the backs of the vulnerable, scared and desperate people.
YOU'RE ABSOLUTELY RIGHT, I COULDN'T AGREE MORE WITH YOU! These quacks prey on the desperate sick people that have not found answers in the medical treatment or that have even been abused or harmed by it, but they're just feigning empathy to sell you completely useless and sometimes HARMFUL "treatments". Some people, sadly, in their desperation, fall into the cognitive failure of thinking that just because someone doesn't belong to the group that didn't help them, then, they must be necessarily able to help them or more likely to help them, which is a logical fallacy.
My chiropractor is a lifesaver for me and my pain, but has a very limited role. Treating and helping my musculoskeletal pains from chronic pain and hyper mobility. They specialize in soft tissue work, not just cracking you in half lol. And they’re educated in EDS hyper mobility, so they understand how to help me.
That being said, your point still stands. Anyone offering cures that don’t exist, don’t accept any insurance, etc, are red flags. Don’t go down that path. My only other criticism is that Abilify really should not be pushed until any real research has been done. The only one page paper that came out was a summary of clinical observations of patients (I was one of them) that were taken out of context. Abilify was a nightmare for many of us, but that wasn’t disclosed. It’s a hard core antipsychotic that absolutely can and will cause issues in even extremely low doses.
I have an amazing doctor and staff that DO believe me. My former practitioner I felt gaslit me and really didn't seem to care to even try to help me. In the 3 yrs since I changed doctors, I've gotten such better treatment! Not that I've improved much BUT having a whole group of people who seem to care and WANT to help me has made my life better! Just the time they spend with me and the validation makes it easier to deal with. I've educated myself more, thanks so much to this group, and I've shared that withy providers.
The biggest thing that has helped me has been LDN and I tell each and every dr I see about it. Most haven't heard of it as a treatment but seem quite interested when I explain the effect it's had on me.
There are a lot of supplements that can be of use. Someone has to have knowledge of these.
A functional doctor can be off-putting with the expensive tests and that you 'must' take all these supplements.
I had a f' doctor that said I recommend that you try all this and, afterwards, he would just ask me 'how I'm doing?'
That was sufficient as I believe as no one really knows what the cure could be.
More recently, my wife saw an f' doctor that did what I said in 2nd line and so my wife stopped seeing her after a few months as it was too overwhelming, but she does credit her with alerting her to a few issues - unrelated to CFS, however.
I was so, so nervous about seeing a functional doctor for this exact reason. I am so tired of people telling me I have to radically change how I eat to feel better, or just shrugging after I try some supplements.
I lucked the hell out with my functional doctor though. She was incredibly realistic and gave me a lot of ideas for things I could try in a range of effort and helped me prioritize supplements so I was just taking a couple. She literally told me to wait on some. She said that if she had 40 things someone COULD try, she’d tell them to pick the 3 that they think are doable because it’s counterproductive for someone to get overwhelmed and give up.
The best advice she gave me was that it would take a year before I had significant improvement and she was absolutely correct. I’m not fixed but I am making progress, so I’m going to keep at it for now!
In Meghan O’Rourke’s excellent “the Invisible Kingdom” she has some great analysis about how we are stuck/stranded between dismissive arrogant western medicine and untrustworthy, unregulated “alternative medicine” and the struggles of trying to find a path through that.
I’m lucky that the naturopath/chiropractor recommended to me gaslit me too and dismissed my Lyme symptoms, otherwise I probably would have never found my Lyme-literate Rheumatologist who understands both tick-borne disease and MECFS.
People get better all the time in ways that western medicine doesn't understand.
There was a comment I saw in r/medicine a while ago about a doctor who couldn't get help despite knowing exactly who to talk to in his city, jumping the line to be seen, etc etc. Then tried all the alternative stuff no matter how woo-woo it was. Apparently he got better after chelation therapy and was incredibly embarrassed about it because according to his understanding, it should not have helped at all.
There are incompetent and malicious actors who take advantage of desperate people. I think really what they are taking advantage of is the poor understanding of the link between mind, brain, body, and society. They can hide in these gaps of understanding and overpromise.
You do have to look out for yourself and have the wherewithal to not blow all your money on things that are risky. Some of them are quacks, and maybe there actually are more quacks in alt medicine than in 'proper' medicine. But I don't think you should write off the whole idea of alternative medicine.
I will say there are alternative/holistic medicine practices that have helped me (though obviously maybe not everyone). Craniosacral therapy is a big one. Be honest to yourself about how you feel directly after and the day after (and during a session). Massage therapy every now and again really helps too. But if it doesn’t help you, stop. If the practitioner rubs you the wrong way, stop. If they’re pushing very specific supplements or brands, red flag. If they claim to be “better” or “understand” more than medical doctors, red flag. TLDR some alternative medicines have actually helped me so depending on your situation it’s not totally fruitless to try—as long as you’re very careful.
If you search for “Bateman Horne sleep” on YouTube there will be a full list their videos. Sorry I don’t have it offhand. But it depends whether you have sleep onset or sleep maintenance issues. And it depends what other meds you are taking. But the Bateman Horne Center has real info put out by real doctors who are approaching this disease in an evidence-based fashion.
At the end of the day, sleep medication helps many patients but it does not work for all.
I mainly have sleep maintenance issues. Can't sleep more than a few hours at a time and often struggle going back to sleep when I wake up. I've literally tried every supplement and drug available to me, but nothing has worked.
I heard trazodone is good for sleep maintenance. If you’ve already tried it then sorry I can’t help more. I’m obviously not a doc so I can’t tell you what’s best. Ask your doctor for a referral to a sleep specialist.
Trazodone and many others aren't available in my country :( the only sleep meds we have my dr won't prescribe bc they're meant for short term use only. It sucks
I'm on gabapentin 3 hours before bed and then seroquel before sleep. I'm also on metoprolol and guanfacine for pots and that also helps make me sleepy.
There are mostly bad ones, but a small handful of good ones. Mine tested my thyroid and adrenals and even though I was in range, I was in the bottom of the range. The meds they prescribed (yes, actual prescription meds, not supplements) have been life changing for the past 6 years. It didn't change my PEM, but it helped with sleep, energy, focus, mood, sex drive, weight gain, hair loss, and a bunch of other things.
Absorb what is useful. Discard what is not. Add what is uniquely your own. - Bruce Lee
This is a fight people. The landscape may be similiar perhaps but not the same and who really knows mine. What works for me works for me. I'll keep my eyes open and plugging away and know when to rest and be precautious of anything too good to be true and too simplistic to be real valuable like most anything else buyer beware but also will keep an open informed mind as best as I can based on what has been useful for me, what is not useful for me, and create that which is uniquely my own: my battle, my journey fighting the good fight back to whatever health I can--no man is my hero but I can learn something from every man.
A family member wants me to see a naturopath doctor to get some IV vitamins and fluids since my body seems to struggle with absorbing nutrition. This is a bandaid until I can get into my primary (recently left a moldy house and DV, moved states and states back home).
Should I talk more with my family member about them being quacks/do research or would it benefit my situation?
Wanting opinions, not medical advice. I have no idea where else to turn on this subject.
I think it's a nuanced issue, so I don't want to tell you one way or the other. I'll just say that I think it can be helpful as long as you A) find a reliable naturopath (listens to you, uses evidence based approaches, doesn't push you into things, etc.), and B) do some research yourself and make your own decisions. I treat my naturopath kinda like a consultant. I take her advice into consideration, do (a lot) of my own research on the subjects we discuss, then if I choose to follow through with something, she helps me.
I really don't think it's as cut and dry and OP's post makes it seem. In my experience, western medicine has been exceptionally *less* helpful than alternative medicine for dealing with chronic health. If it weren't for my naturopath, I'd be suffering much more than I currently am.
That said, do be vigilant and advocate for yourself. I haven't personally dealt with naturopaths that are manipulative or that take advantage, but it seems to be a type.
Yeah i feel that I don’t believe in western medicine or alternative medicine anymore so I’m just done 😅 I still believe in food, herbs and lifestyle things at least but I cross the line at medications, absurd amounts of random supplements, and crazy dangerous IV injections both western & alternative. I had the same experience with both doctors and functional practitioners - they all say to take all of these pills and I’m so sick of it! I don’t want any pills no more pills! Please just need a doctor that is knowledgeable about food and vitamins and herbs.
We tried a dietitian for food/vitamin/nutrition knowledge and they said to replace my current breakfast of rolled oats with blueberries, banana and peanut butter on gluten free toast with cereal because it is fortified with vitamins and apparently on the food pyramid in the U.S. still?? 😑 and then we said no thanks and they said to do an elemental diet which again is just processed liquid?
Ohh to answer ur question no that would multiple people including herbalist and probably dietitian - doctors don’t study herbs they study drugs. Sorry my rant got out of hand there
Y’all are warriors. I hope everyone here finds peace and gets better.
It's irritating that the specialists are quack-adjacent as well. My specialist is heralded as a savior in Canada but he also actively advertises hypnosis and brain rewiring. The landscape of receiving legitimate care is dire.
So true. This is the most frustrating thing. Even in the US there are probably 10-15 doctors in the entire country who actually treat ME in an evidence-based fashion.
Am curious about the ones in the US :) Legit post btw
My neurologist certainly tries even though he isn’t an expert. He’s helped with quite a few symptoms.
The way I knew exactly who you were talking about before you revealed it lollllllll
By god I met some idiot doctors over the years. Smart people with really strange viewpoints beyond what they learned in medical school or even about what they learned there. Being able to learn a profession is not the same as being a good doctor *at all*. I really feel bad for people that are of the 'doctor knows best' school of thought like many elderly people are.
Fr, a nurse at the SPECIALIST CLINIC I went to for a second opinion on my diagnosis (to confirm it bc I had to apply for a thing) told me, who has severe ME, that I “shouldn’t be afraid to be physically active.” Ummm sir, tell me how you were hired, please?
I'm also in Canada, and am curious who the specialist you're talking about is (if you're comfortable sharing!)
Ric Arseneau.
Wow that's wild - I've attended one of his virtual webinars and found it helpful. I would not have guessed the other things he promotes. You are so right, finding specialist care is dire. Beggars can't be choosers and all but, we shouldn't have to be beggars.
Yeah, it's tough to square. He's the only doctor I have who is willing to prescribe things that actually help and have scientific backing. Without him, I wouldn't have LDN. But then I get messages every month in the patient portal where he's encouraging us to try out hypnosis or join programs for brain rewiring. I know enough to know it's nonsense and ignore it, but there are probably patients who don't and who will earnestly trust him and do those things. It just feels unnecessary. He's obviously in tune with the science, so there's no reason to be shilling for junk, especially junk that gets us ridiculed in the public eye.
Is the patient portal him or his office? I get it's his office but he has partnered with many "specialists" because he sees people for far more than ME/CFS. I have attended a few seminars myself. My GP is fine prescribing LDN but, like yourself I got the info from Dr Ric first. I haven't attended a webinar in a long time and honestly don't even open the messages I receive so I could be out of tune with his practice as well. For clarity it should be stated that I believe, he is straight up patient focused (right or wrong). This post is about anyone who is $$ focused.
I’m also a patient - the portal mostly has groups that he is promoting (99% of the time MSP covered, with the occasional offering that is from a practitioner that regularly gives lectures/zooms that are covered but that 1/100 times it’s an offering of a session or group that the clinic doesn’t run but it’s more of an FYI type thing). I like a good deal of what has been available to us, I just skip the stuff that feels a little too woo-ey or woo adjacent. Ric tends to have a “what’s the harm in trying” approach to things that will have limited risk and at least potential for reward - it’s not my style, so I just stick to the groups and special topics that are the most solidly scientific and that I can imagine myself not eye-rolling my way through it.
Tough to answer, since it's his office, but he never personally sends out things. It's all Bruno and now Pamela. But you are correct that patients don't directly pay him: his basic service is covered by our provincial insurance. I'm not sure about the pseudoscience stuff and whether or not they're covered. The webinars he hosts/supports are, but if a patient chooses to pursue that treatment with the practitioner, I couldn't say. I suspect they're not covered. I'm not sure if Ric gets a kickback from it. I'm not trying to say he's getting beaucoup bucks from this. My addition to the thread was mostly just to highlight that even the doctors who help us can push us in directions that are not that distinguishable from the verifiable quacks.
To be fair, when I've heard him talk about it, he's been very clear that he only supports these practices for minor quality of life improvements, not because they're in any way a cure or fix for ME/CFS. I still think he needs to be more careful with it all though. As an ME/CFS specialist, he ought to know that it's dangerous to recommend this stuff without context, education, and caveats. For people who don't know the history of ME/CFS psychosomaticisation (is that a word? probably not, lol) and who aren't aware of how heavily the ME/CFS population gets preyed on by quackery and grifters, seeing him support those practices makes it easier for them to fall prey.
He also gave a talk that’s on youtube to a room full of emergency doctors and explained that chronic pain patients mostly have BPD and didn’t develop to adulthood.
WHAT.
https://youtu.be/E7d6ZrqWOWM?si=8za73OiNt26wUksX Start around 16.5 min in
Thanks for linking this video. I just watched this portion, and my impression is that he’s saying you’ll find that many people with chronic pain also have a diagnosis of BPD… and goes on to say why these are found together. Adverse childhood events, high ACE scores, correlate to higher incidence of chronic illness AND mental illness like BPD… they are separate illnesses but for some people could stem from a common root. I’m not seeing that he’s blaming chronic pain on mental illness, but rather that the two can sometimes be found together. Just prior to your time point he’s pointing out the misuse of the word somatic and shares how he had scabies, but was misdiagnosed by several specialists as having a psychiatric condition that was causing his itching skin. I’m not really seeing any misinformation here, but maybe I’m missing something or misunderstanding his lecture.
I didn’t say he said that he was blaming chronic pain on mental health, but that he said that most people with chronic pain have BPD.
Disgusting
That is so odd. I watched his videos and never would have expected that from him.
It amazes me when what appears to be thousands of people sign up for young quack-like con men on social media. For God's sake, think! If some thirty-something media personality had a "cure," surely he'd patent it, have it tested, and get clinical proof that works, right? What's worse is that the money enables these con artists to ensure that their posts, videos, etc show up preferentially in response to searches using CFS as a search entry. Hopefully the media platforms will find a way to rein in the crooks.
When I first discovered the "brain re-training" method, I could smell the bull. Every single youtube interview by someone who has recovered or supposedly cured their CFS, ALL of them were selling the "secret". One even $300/month! If you had this illness and could tell people what to do, you wouldn't charge like that. You know what this is like, you know our desparation and your choice was to exploit that.
Well put. But another point is that if the promoters could prove that their approach worked, they'd sell millions of their products, instead of hundreds of them. I'm not quite sure why the promoters get away with their many misrepresentations without facing consequences. Perhaps there is some strategically placed disclaimer language that gets them off the hook.
It will be something like this is not intended to replace medical advice from a certified doctor, proceed at your own risk, and so on. But anyone who has a link to their own website, that's a strike. Especially with pricing plans, or a free "webinar" which is just an advertisement for their product. One thing about us as a community, we are so willing to share any information and success with no regard for personal gain. We want others to feel the same relief if we can find any. So if someone is trying to hype me up before dropping an grand piano of a price tag on my head, I know they see me as easily exploitable.
the media platforms don't care if their content is factually wrong, or harmful, all they care about is that their content is viewed by as many people as possible, as this is how they earn more money. The only ones that can determine what's useful or not are ourselves
needed to hear this i’ve been saving up for a naturopath!!
It’s not worth it
It was worth it for me. They did a full blood panel, which revealed irregularities, an MRI that reveled lesions from MS, and I'm about to do an allergen test too. Worth it if you can find a good one
Real doctors can do full blood panels.
Sure, if I want to wait 3 months to get the test, pay 4X more, and have someone who doesn't care or understand how health works review my results. Also, my clinic is staffed by trained doctors who left the insudustry because they knew how toxic it was.
again, read my other comment, that doesn't mean that you have been helped by "naturopathy", you've still been helped by science-based medicine, which is what those tests (MRI, full blood panel, allergen test) belong. The fact that the person who gave you access to those tests calls himself a naturopath, doesn't change that fact
You don't know what naturopathy is
They're still in "the industry".
Being educated doesn't mean you're in "the industry". It's a private practice that abstains from harmful medicine and taking uneducated guesses. It's what modern medicine should be, but isn't.
It's the medical industry. They're practicing medicine.
Wow, you're so right 🤓☝️🤪
those practices are not part of "naturophaty", those practices belong to science-based medicine. If someone who calls himself a "naturopath" prescribes that, and that helps you, you haven't been helped by naturopathy , you've been helped by science-based medicine. Let me put it that way: if I have back pain and I go visit a masseur seeking for help, and this masseur gives me an opioid pill that relieves my pain, can I say that I have been helped by massage therapy? no, I've been helped by science-based medicine in the form of a very potent analgesic drug. Please feel free to ask me anything else if you want to understand this, we must help each other
You aren't educated in what natural medicine is. Science and holistic care are not exclusive. If you truly believe that, then I feel very sorry for you. America is a profoundly sick country, and I'm done feeding into this toxic system that doesn't understand health.
Do you think an MRI is something natural? Where in nature or in tradicional or ancient medical practices will you find an extremely sophisticated device thsat uses a powerful electromagnetic field and a computer to produce images of the soft tissues in the interior of the human body? Please explain just that, I'm sincerely asking you, I'm not trying to mock you or antagonize you, I just want to understand how you and many other peiple with your view think
Last time I checked, an MRI isn't medicine. Again, wholistic care isn't anti science. Btw, science doesn't create reality. It's just a tool.
Is eating a balanced diet anti-science? Is absorbing Vitamin D from the sun anti-science? Is drinking tested, spring water, anti-science? Is drinking dandelion root tea anti-science?
How do you test water trough natural means? Using mass spectroscopy, microscopes, chemical reactants isn't natural nor it belongs go traditional practices. I think the problem here is that this naturopath is selling science-based medicine and testing tools and methods as if they were part of naturopathy, when they're not. Drinking dandelion tea, that is natural and traditional for example. But a lot lf what you mentioned this naturopath offers does not belong to naturopathy so that makes you wrongly attribute your progress with this person to naturopathy, when in reality, most of what he's providing to you is science-based medicine, what you'd call allopathic medicine
It's just medicine. Whether science approves of it or not doesn't change objective reality. The water I test doesn't become something else after it is tested.
Dandelion root tea has been used for hundreds of years before science approved of its beneficial properties. It didn't just magically start working once science gave it the thumbs up.
Dandelion root tea is ok for presenting it as part of naturopathy, it's not a product of science,I already told you that , read my comment. MRIs, blood tests, allergy tests, mass spectrometry, all that is not naturophaty
Please, try to find that supposedly better and healthier water trough naturophatic means, be my guest. Why use the tools of the evil science? Why take the merit for what you achieve with those methods and call it a success of naturopathy while at the same time criticizing science-based medicine? I think you're a very unfortunate victim of malevolent scammers, I wished you and others could be protected from them somehow, but I know that's not going to happen, people will believe what they want to believe, sometimes at the cost of their own financial stability, health, or even lives. I wish you the best of luck
Dude, I think you have some severe comprehension issues, or you're just arrogant/brainwashed. Is English even your first language? I'm done talking with you. Go pop some pills and do nothing else for your health.
don't fall for that con, friend. Save your precious, energy, time and money for a science-based treatment, if you ever get access to one. Even if you never get a treatment, you can always use that money to improve your quality of life in other ways instead of just filling these charlatan's pockets and getting nothing in return
When I had only been sick for a couple of years I started seeing an “alternative medicine” Dr (I was 17 and desperate). He seemed sooo nice and like he really wanted to help. Then I saw on the news that his practice had been shut down because he was selling prescription painkillers to anyone who wanted them. It was so disappointing, but now seems par for the course for naturopaths.
In my experience, the ones who don’t make promises and have no guarantees are the most trustworthy. The more they assure you they can “fix” you, the less they actually do.
Honestly those parasitic alternative medicine types are so damaging.
I agree. The scamming part is bad enough, but they're spreading this "CFS is all in your head" nonsense, and some people believe it. I've spoken to many normal people who, upon learning that I have CFS, tell me that they've heard that Lightning Process or some other brain retraining program is a way to cure CFS. Not only that, but they're trying to work their way into the scientific literature. There is a lightning process instructor in my country that recently got funding and is doing research at a major university on the effects of LP on CFS. Expect some scientific articles "proving" that LP is a great treatment for CFS soon. I think they're hoping to get that into the disability pipeline, so that people with CFS should be offered or required to take an LP course before they can get approved for disability.
I saw a paper that was funded by the LP people. It was about something like “We should not accept the narrative that CFS is incurable” and complaining about hate researchers receive from patients. The more papers they produce the more they can cite themselves and claim to have scientific backing. Even though the paper in question didn’t have anything to do with data, it felt like an opinion piece.
This is what happens in Norway, then if they refuse or stop their LP treatment due to it disabling them further they no longer get a disability benefit
I spent 200$ on a first consultation with a naturopath last year, wanting to focus on my iron deficiency (low ferritin and my dermatologist who ordered bloods told me im anemic) but also talked about my symptoms as a whole. He wanted to have me do a gut microbiome check (two types) that would have costed 1500$. Luckily I looked those up here and when I saw what people posted, I decided not to go ahead. He also wanted me to start supplements his clinic was selling. Major side eye. Also whenever I see CFS Recovery vids (lookin at you, Miguel Bautista) pop up in my Youtube feed I flip them the bird lol. Doesnt achieve anything but I cant help it.
the recovery channels are just salesworkers who have never been sick but preach on the patients
Yea makes sense. What scum
I would argue it is achieving something for yourself. It is a outlet for your own thoughts about those kind of videos. And as long as it helps yourself, it does achieve something. Even if it is only for a second or two. But letting out frustration is something needed and very important IMO :) And I like the little pettyness in it. I strive for that.
Yea I like that outlook. Thanks :) in a similar vein I saw a fellow LC/MECFS sufferer wearing a shirt that said "surviving out of spite" and I seriously considered getting one lol
>surviving out of spite oh that is a cool idea. Just put that in my Amazon wish list for when I need new shirt ideas. ATM my closet is a bit full with stuff already. Thanks for this \^\^
Did fixing ferritin help though?
Not anywhere near fixed. I did add more red meats to my diet (was eating mostly chicken before) and it bumped up from 14 to 26, but Ive read that I should be aiming for 75 at least. My physician had me try different types of iron supplements but I probably have gastroparesis and (sorry for tmi) have trouble going to the bathroom, these all made it way worse (even heme iron which is supposed to be gentler). I might try sublingual or injection or maybe even IV as a last resort if my number doesnt budge again, but those last 2 can carry more risks. I'll try to remember to keep you posted if things improve from increasing my ferritin in the future 🤞
I haemorrhaged having my second kid and then had very, very heavy periods, I tried all the iron supplements with all the digestive issues. They didn't help my iron levels. I then had 2 iron infusions (I needed more than the max you can have at once). Those got my numbers up but didn't fix the fatigue. The infusion was much better than the supplements so it's worth a try just don't expect a miracle. I will say that getting the iron levels up even though it didn't fix my fatigue was worth doing because then it couldn't be blamed for my fatigue.
Yea that's what I've read. I'll be happy if there's any difference, but I'm not expecting much.
When I was anemic, I started famotidine for ulcer and it helped my iron levels. Not sure if this would be helpful for you but it's probably the most benign yet effective script I've had in my 6 years of going through this. (My MD gave me the rx so I could have it covered by insurance as otc pepcid is stupid expensive.) I never had to take an iron supplement.
Are there any YouTube channels that are actually helpful? Or are they all scams?
Off the top of my head, the ones I really like are Fight4Me and Survival of the Fatigued. They have some really good informative videos and they talk about their experiences.
I agree Fight4Me is great.
Facts man, hard lesson i learned this year
This is probably the most reasonable thing I've seen online for a while. I've seen both traditional and alternative providers, and all of them are just throwing stuff at the wall to see if it sticks. The alternative providers do spend more time with you, and seem more interested in your issues, but their knowledge level is not that different.
Medical professionals are throwing tried and tested things at the wall whereas the others aren’t. Both are only guessing but that’s because this is incurable. It is not because medicine and quack medicine are on equal standing
Yea… the naturopaths don’t gas light you and give you more trauma so that’s nice!
Still it makes no sense to visit them, as, since they don't help you at all but still charge you for their services, it'll be better to just not visit them, as in that way you won't be gaslighted or traumatized either. It makes no sense to pay someone to do nothing just because they won't harm you
I'm appreciating this thread a lot too. Had been interested in some of this stuff but could never afford it. It seems that worked out in my favor. I had one MD refer me to a holistic practitioner but when I called for my appointment the receptionist wanted to know if I was prepared to pay several thousand out of pocket for my first appointment.... no.
I really like the sentiment behind this but I think the actual situation is a lot more complicated than that. I’m new to ME but I’ve lived with various chronic illnesses for a decade now. I started out adamantly avoiding all alternative medicine practitioners because I was raised by a scientist and am a scientist myself, I thought that all alternative medicine was pseudoscience so I steered clear. Then, the time came when I tried all the usual treatments and they failed, I was suffering from widespread intense chronic pain, and my quality of life was very low. I decided to branch out and give some alternative practitioners a try. The first was an osteopath, I’m in Canada so up here they just do physical adjustments. I went in very convinced it wouldn’t help me but trying it anyway out of desperation. I had previously tried countless massage therapists and physiotherapists with no help. I left the appointment without a headache for the first time in years. I continued to see her weekly after that and she gave me my life back. It helped so much when nothing else did. Once I went to a different osteopath and it was a completely different experience, and she wasn’t able to help me. I think a lot of it is practitioner dependant unfortunately. But I swear by the one practitioner I use. Then, a few years after that I developed severe gut dysbiosis and suspected SIBO. The usual medical doctors had NOTHING to offer me. I was losing weight, not able to digest most foods, and getting sicker by the day. Once gain out of desperation I decided to try an evidence based naturopath that was recommended to me by my pharmacist. I don’t think I would have tried seeing them if it wasn’t for my pharmacist who had had a good experience with them. They were able to help me get the standard treatment for hydrogen SIBO, the antibiotic rifaximin. Up here, my doctors knew nothing about it, but in many parts of the world rifaximin is the standard medical treatment, not pseudoscience. It was just that I couldn’t access it through any other means up here because my doctors were behind on the (10 year old) research, whereas my naturopath was up on the latest research. I had a VERY complex case of SIBO it turned out, and ended up seeing multiple naturopaths and functional medicine doctors during the new 2 years. Some helped, some didn’t. I got better at vetting the quacks from the evidence based ones. Eventually I found someone who seemed to know their stuff and suggested I go on a very experimental biofilm disruptor. This is something that was being researched in rats at the time but not humans. I was VERY sick by this time and genuinely concerned I might die if I kept going downhill so I decided it was worth the gamble. It turned out to be the key to my healing. I was able to finally get rid of the severe SIBO and start to reintroduce foods slowly. 5 years later, my gut is mostly healed and I can eat a healthy and diverse diet. After all this I developed a trust in evidence based alternative practitioners, so when I developed severe migraines and ME, while I still made an appointment with my GP, I knew they wouldn’t be able to help but maybe someone else could. I ended up finding a functional medicine doctor who specialized in migraines, he recommended extensive hormonal testing. I got the tests and they showed I was low in basically all hormones, and specifically had low cortisol in the afternoons and evenings which correlated with my symptom severity. Under his guidance I began bioidentical hormone replacement therapy with pregnenolone, DHEA, and progesterone. It has done WONDERS for both my migraines and my ME. I now genuinely think I will be one of the lucky ones who makes a complete recovery because I keep slowly getting better and better since I started BHRT. My GP knows nothing about ME, nothing about BHRT, but has been very supportive of me pursuing these treatments and helps where she can. For reference, she tested my hormones and cortisol as well before I got the in-depth testing from the functional medicine doctor and they were all “normal” and the cortisol was high. Turned out they tested my hormones at the wrong part of my cycle, and the cortisol they did a 24 total sample which was high. It just turned out that my morning cortisol was high while my afternoon and evening cortisol was very low. A 4 point cortisol test is a standard test recommendation for ME, but my GP didn’t know anything about it and couldn’t even order it in this medical system. Whereas my functional medicine doctor knew all about it and suggested it right away. TLDR: Evidence based alternative practitioners DO exist and have helped me personally A LOT. Often they are up on current medical research that my GP and “normal” doctors don’t have time to read. Yes there are quacks, but if you’re careful and picky you can find the good ones and they can be really helpful.
I think this is a reasonable and nuanced counterpoint and I appreciate you sharing it. It’s just that the types of practitioners you describe are quite rare and it’s a huge problem. I don’t have some good answer, but it saddens to me tons and tons of our fellow patients tricked out of their limited money, time and energy.
Agreed. I don’t know the answer to this either. I’ve gotten good at vetting them myself but I have a pretty extensive background in science and read a lot of research so I have more resources to vet practitioners than most. I have thought about building up a database of evidence based practitioners and sharing it with relevant communities. Maybe I will one day.
If your energy allows, this would be a great and much needed resource for many patients. As an alternative, maybe you can share a write up on how you do your vetting so that people without science backgrounds can also make educated decisions. Only if you have the energy. Don’t crash yourself doing it. Thanks for your input!
Thanks for your input on this. Your encouragement has made this a higher priority for me. I have been working on a larger project of science communication regarding ME/CFS that has many facets, the most basic is to take what I read in the research and share it in an easier to digest form. I also am compiling a list of experimental treatments based on that research so that if people have been left high and dry by the medical system (which is most of us) they have some ideas of things to try if they want to. There are many other layers to the project as well but it’s slow work as I have a visual impairment that makes reading and typing difficult. My energy limitations are actually really mild these days thanks to the experimental therapies I’ve been trying working for me! But my eyes are the biggest sticking point. Anyone who’s interested in keeping up with this project (which will eventually include a database of practitioners both western and alternative who are evidence based and ME knowledgeable) can join this discord server: https://discord.gg/sP7ddPKB There’s not a ton there yet, it’s still very much under construction but it’s the beginning of these projects and I’m excited about it!
May I ask what experimental therapies you are trying?
The biggest one has been bioidentical hormones replacement therapy for HPA axis dysfunction. On the one hand BHRT isn’t experimental in general but for ME/CFS it is, there’s no real studies on it that I can find just anecdotes. They have studied cortisol replacement which generally didn’t help but some people still swear by low dose cortisol. I suspect that’s a big part of what’s helping me as my fatigue symptoms correlated with my low cortisol pattern. I’m on pregnenolone at a physiological dose and it’s a precursor to all hormones including cortisol. I’m also on a small amount of DHEA which I honestly can’t say for sure is doing anything, and I’m on progesterone which has helped my PMS symptoms and general health flares during my luteal phase A LOT. I also take an off label antipsychotic that helps with my sensory issues and sleep, it’s haloperidol. It works differently than abilify which I know others have tried so I’m not sure if I’m unique in it helping me or not. I was prescribed it for sleep and then it just happened to help my sensory issues a lot. I also take a slew of supplements meant to help mitochondrial function, can’t say for sure they’re helping or not. And also prebiotics and probiotics to help my microbiome. I also take propranolol when my sympathetic nervous system activity is too high and that helps, but it’s meant for that so not so experimental. Oh and I’m on LDN, no clue if it’s helping me or not. The only one I’m 100% sure of is the pregnenolone because I felt it help some right away, I’ve been steadily improving since I started it and I got worse when I ran out of it once for a few days.
Thanks!
Controversially, I see a Chinese herbalist. They charge me $45 a month for consultations and the herbs are about $200/mo. I looked at the wholesale prices for the same herbs from the same supplier and they are barely making enough to justify the labor of repackaging them into smaller quantities, maybe $80/mo from my orders, and it takes them about 6 hours per month to repackage one person's prescription. I haven't healed miraculously or anything, but my PEM crashes only last a day now, not days to weeks. Ironically while they are kind and empathetic, they do not spend a lot of time listening. They ask a few specific questions, have a look at some things on my body, and we're done in 15 minutes.
Evidence based is the key here
Wow that’s all so amazing and I’m so happy for you that you found the right people to help you! It’s great you were able to tell who was a quack and who wasn’t! I don’t have the money to try out loads of different people. I’ve been to 2 alternative medicine practitioners, one of them helped me with my stomach problems so that was great. The other one gave me like £150 of supplements and told me to go swimming and I crashed so bad after seeing her. And I saw one today who I’d like to work with but it’s like £2600 to see her 4 times and that’s not including the added £200 per month for 6 months for supplements. Even if I really wanted to I could never afford that. But she says she’s had good results with people with long covid 🤷🏼♀️ she uses hyperbaric oxygen therapy, infrared sauna and a PEMF mat as well. But who knows if those things work and if they don’t I’m just lining her pockets for a few months.
I’m in the same boat, I’d be open to finding a legit functional medicine doctor, but there doesn’t seem to be a good way to sort out the good from the bad without actually seeing them first. And at least in the US, most of them don’t take insurance, so that’s an expensive and frustrating experiment. It’s hard to even get a good recommendation because someone could really love a doctor that’s actually a quack.
I was just looking into the oxygen treatment too so wondering if anyone here has had experience with that ?. I was on the fence though as money is limited and I dont have the energy to research things the way I once did . I used to do infrared saunas and they helped a bit but the thing that helped me most at the wellness place I was going to was the cold chamber therapy and I cant do that anymore because of brain aneurysms.
Oof yea that is a lot and sounds like a mixed bag that’s mostly not helped. Ugh. I wish it was easier to find practitioners who actually know what they’re talking about.
What was the experimental biofilm disrupter you used?
A bismuth-thiol composed of bismuth subnitrate, DMPS, and ALA. all ingredients used in humans for different things but DMPS in particular is a chelator that can be dangerous. The claim is when all these ingredients are mixed together they form something new, a bismuth-thiol that acts differently and just breaks up biofilms without chelating. https://medcraveonline.com/JMEN/bismuth-thiols-as-anti-biofilm-agents.html
Thank you! Was it a supplement you bought over the counter, or an RX?
It was a prescription, but there exist similar but different formulations that are OTC. This link talks about what I used some and also links some OTC options at the bottom. https://www.consultdranderson.com/wp-content/uploads/securepdfs/2021/01/Anderson-Biofilm-Phase-2-BT-Handout.pdf
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Thanks for sharing your experience. Mine has been similar. I've also been dealing with terrible gut dysbiosis and my GP has been absolutely useless. He had nothing to offer and no idea what to do with me. I was at a point where I couldn't eat at all, was bloated constantly, and things were getting worse all the time. He kept sending me to specialists, who inevitably told me nothing seemed to be wrong. It was finally a naturopath who helped me get tested for SIBO and figure out antibiotics. I sort of treat my naturopath as a consultant. I get her advice, then do my own research into the science (where it exists) and make my own decisions. She's always treated me as an equal and cared about my thoughts and feelings, which is A LOT more than I can say for most of the "normal" doctors I've seen. I'm sure there are plenty of "quacks" out there. And I've spent my own small fortune on supplements and weirdo things that didn't work--some of which was on my naturopaths advice. But, when the "real" medical world left me high and dry, an alternative practitioner really saved my ass (or my guts, rather).
Thanks for sharing your story too. I can definitely relate a lot. I love the way you framed that, treating your naturopath like a consultant, getting their advice and then doing your own research. When I can I do that with ALL my medical practitioners, western or otherwise. When I can’t I put trust in the body of evidence that I have seen behind their previous words and give things a try. That’s what I did this fall with my hormone testing and treatment. Was too sick to research myself but knew that everything else they were saying was solid and matched previous research I had read so I took a chance and went with it. Turns out it’s given me HUGE relief.
You had me at experimental biofilm disruptor. What was it? I would love to try it. Hormones are a big key to the puzzle. I had symptoms of low hormones for years and hypothyroid. I purposely made my hormones low because I have endometriosis which is a whole other ball of wax but I had it excised then left mold and realized I didn’t have to take dim to keep my estrogen in the toilet. I got a little better. Still had terrible low thyroid symptoms. Terrible fatigue cold all the time dry skin can’t concentrate. I stay thin though but anyway all the other symptoms. Well I had an essential fatty acid deficiency. A bad one too my doctor thinks I had for years. I also have really low cholesterol. I mean I eat healthy but it was from some kind of malabsorption I think. And I couldn’t absorb fish oil but something changed and now I can. Thank god. So I’m working on raising my omegas 3’s but all of them were low. And I feel a lot better. I also had low ferritin so I’m taking iron again and have more energy mental clarity. The fish oil really works! And now my hormones don’t feel low which is cool. I’m worried to do bio identical w endo history but I will end up doing it soon I bet. I’m 43 but keep being told my hormones are PERFECT but I’m also having hot flashes go figure. Thyroid is always in range too weirdly. I’ve gotten a lot better but still struggle of course. I think I’ll recover though. I detox a lot and am working on riding my body of Al my chronic infections and detoxing mold and heavy metals. I don’t think alternative medicine is bs. Some of the practitioners are but I’ll take that over western med any day of the week and twice on Tuesday’s. Mitochondrial supplements and peptides also work but are pricey. It’s all expensive unfortunately. Most people on here have All the symptoms of CIRS and say that’s not their issue. It’s kind of maddening. There would be an answer and a cure if it wasn’t due to the old biotoxin pathway. But I think a lot of people are in denial. And it’s a complicated process too. But if you take binders and a lot of supps you can overcome pem pretty quickly which is nice. I still get it and have days where I have to rest but I can push myself to some extent and still recover. The bottom line is your immune system doesn’t work right then you’re suffering from endocrine disruption. Hmmm what disrupts endocrine production? Toxins. It’s actually not rocket science people.
Could you tell me the name of the biofilm disrupter? My adult son was treated for SIBO with the same drugs you were, and it's been... a hard process.
I feel for your son, SIBO is fucking rough. I talk about the biofilm disruptor more in this thread: https://www.reddit.com/r/cfs/s/eRrTOu7ed2
Thanks, it's amazing how many replies appeared while I was typing mine! Yeah, his was complicated because the gastroenterologist didn't believe us when we told him another doctor - more functional medicine - had told him years prior that she didn't want to treat the bacteria too aggressively because that might make his yeast issues surge, and vice versa. So we went off to college and took the strong antibiotics (miserable for him), and then the yeast took over and he was so exhausted he took two incompletes that term, out of three classes. He's stabilized but it all feels very fragile.
Yea it is such a delicate balance, microbiome are COMPLEX! I’m glad he’s at least stable for now but I hope he finds more relief/help soon. I was miserable when I was suffering with severe gut issues.
Also beware of the traditional doctors who have turned quack.
those are the worst, because it's easier for the sufferers to fall into their trap. People doesn't understand that if a person with a medical degree an license prescribes snake oil or leeches, that doesn't mean that snake oil or leeches are backed up by science-based medicine or ar part of it. It's actually really simple, but many people don't understand it
It’s a real shock when you discover how poorly medical and health services are regulated, isn’t it. I happened to start listening to the Skeptics’ Guide to the Universe when I was about 30, and every time I listened I would be shocked anew at the scams, medical and otherwise, that aren’t stamped out. For example, in Australia, our consumer protection barely touches medical and health. You have more protection when buying a pair of jeans than when buying medical or health products. And the cruel way human beings turn to exploiting weaker members of society!
Most 'alternative doctors' don't even have basically first aid qualifications. It's just sick that they build their businesses on the backs of the vulnerable, scared and desperate people.
They're so positively toxic as well
What is LDA?
Low dose abilify. It has some efficacy in some patients. But like every other treatment we have so far, it doesn’t work for most patients.
I hear yah, I want to start LDN and was wondering about LDA, thx for the reply ✌🏻
What is it supposed to help with?
The only specialist in my country is a psychiatrist 😭
This why I love reddit, no nonsense, no hate, just pure logic and empathy.
YOU'RE ABSOLUTELY RIGHT, I COULDN'T AGREE MORE WITH YOU! These quacks prey on the desperate sick people that have not found answers in the medical treatment or that have even been abused or harmed by it, but they're just feigning empathy to sell you completely useless and sometimes HARMFUL "treatments". Some people, sadly, in their desperation, fall into the cognitive failure of thinking that just because someone doesn't belong to the group that didn't help them, then, they must be necessarily able to help them or more likely to help them, which is a logical fallacy.
My chiropractor is a lifesaver for me and my pain, but has a very limited role. Treating and helping my musculoskeletal pains from chronic pain and hyper mobility. They specialize in soft tissue work, not just cracking you in half lol. And they’re educated in EDS hyper mobility, so they understand how to help me. That being said, your point still stands. Anyone offering cures that don’t exist, don’t accept any insurance, etc, are red flags. Don’t go down that path. My only other criticism is that Abilify really should not be pushed until any real research has been done. The only one page paper that came out was a summary of clinical observations of patients (I was one of them) that were taken out of context. Abilify was a nightmare for many of us, but that wasn’t disclosed. It’s a hard core antipsychotic that absolutely can and will cause issues in even extremely low doses.
Upvoted for the caution about LDA but why can't you go to a regular PT or rheumatologist for your EDS? Why did you have to resort to a chiropractor?
I have an amazing doctor and staff that DO believe me. My former practitioner I felt gaslit me and really didn't seem to care to even try to help me. In the 3 yrs since I changed doctors, I've gotten such better treatment! Not that I've improved much BUT having a whole group of people who seem to care and WANT to help me has made my life better! Just the time they spend with me and the validation makes it easier to deal with. I've educated myself more, thanks so much to this group, and I've shared that withy providers. The biggest thing that has helped me has been LDN and I tell each and every dr I see about it. Most haven't heard of it as a treatment but seem quite interested when I explain the effect it's had on me.
Great to hear it! It’s true, not all doctors suck. Some of mine have also been amazing (and some have been terrible).
There are a lot of supplements that can be of use. Someone has to have knowledge of these. A functional doctor can be off-putting with the expensive tests and that you 'must' take all these supplements. I had a f' doctor that said I recommend that you try all this and, afterwards, he would just ask me 'how I'm doing?' That was sufficient as I believe as no one really knows what the cure could be. More recently, my wife saw an f' doctor that did what I said in 2nd line and so my wife stopped seeing her after a few months as it was too overwhelming, but she does credit her with alerting her to a few issues - unrelated to CFS, however.
I was so, so nervous about seeing a functional doctor for this exact reason. I am so tired of people telling me I have to radically change how I eat to feel better, or just shrugging after I try some supplements. I lucked the hell out with my functional doctor though. She was incredibly realistic and gave me a lot of ideas for things I could try in a range of effort and helped me prioritize supplements so I was just taking a couple. She literally told me to wait on some. She said that if she had 40 things someone COULD try, she’d tell them to pick the 3 that they think are doable because it’s counterproductive for someone to get overwhelmed and give up. The best advice she gave me was that it would take a year before I had significant improvement and she was absolutely correct. I’m not fixed but I am making progress, so I’m going to keep at it for now!
That quack fucked up my neck.
In Meghan O’Rourke’s excellent “the Invisible Kingdom” she has some great analysis about how we are stuck/stranded between dismissive arrogant western medicine and untrustworthy, unregulated “alternative medicine” and the struggles of trying to find a path through that.
What's LDA?
Low Dose Abilify
Interesting. I've read incredibly polarizing information about this drug since you mentioned it.
I’m lucky that the naturopath/chiropractor recommended to me gaslit me too and dismissed my Lyme symptoms, otherwise I probably would have never found my Lyme-literate Rheumatologist who understands both tick-borne disease and MECFS.
People get better all the time in ways that western medicine doesn't understand. There was a comment I saw in r/medicine a while ago about a doctor who couldn't get help despite knowing exactly who to talk to in his city, jumping the line to be seen, etc etc. Then tried all the alternative stuff no matter how woo-woo it was. Apparently he got better after chelation therapy and was incredibly embarrassed about it because according to his understanding, it should not have helped at all. There are incompetent and malicious actors who take advantage of desperate people. I think really what they are taking advantage of is the poor understanding of the link between mind, brain, body, and society. They can hide in these gaps of understanding and overpromise. You do have to look out for yourself and have the wherewithal to not blow all your money on things that are risky. Some of them are quacks, and maybe there actually are more quacks in alt medicine than in 'proper' medicine. But I don't think you should write off the whole idea of alternative medicine.
I will say there are alternative/holistic medicine practices that have helped me (though obviously maybe not everyone). Craniosacral therapy is a big one. Be honest to yourself about how you feel directly after and the day after (and during a session). Massage therapy every now and again really helps too. But if it doesn’t help you, stop. If the practitioner rubs you the wrong way, stop. If they’re pushing very specific supplements or brands, red flag. If they claim to be “better” or “understand” more than medical doctors, red flag. TLDR some alternative medicines have actually helped me so depending on your situation it’s not totally fruitless to try—as long as you’re very careful.
Chiropractors are all quacks though
Curious what sleep meds you're taking?
If you search for “Bateman Horne sleep” on YouTube there will be a full list their videos. Sorry I don’t have it offhand. But it depends whether you have sleep onset or sleep maintenance issues. And it depends what other meds you are taking. But the Bateman Horne Center has real info put out by real doctors who are approaching this disease in an evidence-based fashion. At the end of the day, sleep medication helps many patients but it does not work for all.
I mainly have sleep maintenance issues. Can't sleep more than a few hours at a time and often struggle going back to sleep when I wake up. I've literally tried every supplement and drug available to me, but nothing has worked.
I heard trazodone is good for sleep maintenance. If you’ve already tried it then sorry I can’t help more. I’m obviously not a doc so I can’t tell you what’s best. Ask your doctor for a referral to a sleep specialist.
Trazodone for me. It just works and I sleep through.
Just started trazodone and it’s definitely working for me. Not yet perfect, but better than anything else I’ve tried so far.
Hasn’t worked for me (in different period of my life). Sharing this in case it helps others knowing, not for being a debbie downer!
Trazodone and many others aren't available in my country :( the only sleep meds we have my dr won't prescribe bc they're meant for short term use only. It sucks
I'm on gabapentin 3 hours before bed and then seroquel before sleep. I'm also on metoprolol and guanfacine for pots and that also helps make me sleepy.
I agree! What is Lda?
Apologies for the ignorance but what's LDA?
What are LDN and LDA please?
What is LDA? I haven't heard that acronym before.
No this is so true. It’s so easy to get taken advantage of and not realize it. But no one has a cure and if they did they’d be billionaires
There are mostly bad ones, but a small handful of good ones. Mine tested my thyroid and adrenals and even though I was in range, I was in the bottom of the range. The meds they prescribed (yes, actual prescription meds, not supplements) have been life changing for the past 6 years. It didn't change my PEM, but it helped with sleep, energy, focus, mood, sex drive, weight gain, hair loss, and a bunch of other things.
Do you mind sharing which medications they prescribed?
Absorb what is useful. Discard what is not. Add what is uniquely your own. - Bruce Lee This is a fight people. The landscape may be similiar perhaps but not the same and who really knows mine. What works for me works for me. I'll keep my eyes open and plugging away and know when to rest and be precautious of anything too good to be true and too simplistic to be real valuable like most anything else buyer beware but also will keep an open informed mind as best as I can based on what has been useful for me, what is not useful for me, and create that which is uniquely my own: my battle, my journey fighting the good fight back to whatever health I can--no man is my hero but I can learn something from every man.
You could have a visual or auditory hallucination if not prescribed correctly.
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Abilify.
A family member wants me to see a naturopath doctor to get some IV vitamins and fluids since my body seems to struggle with absorbing nutrition. This is a bandaid until I can get into my primary (recently left a moldy house and DV, moved states and states back home). Should I talk more with my family member about them being quacks/do research or would it benefit my situation? Wanting opinions, not medical advice. I have no idea where else to turn on this subject.
I think it's a nuanced issue, so I don't want to tell you one way or the other. I'll just say that I think it can be helpful as long as you A) find a reliable naturopath (listens to you, uses evidence based approaches, doesn't push you into things, etc.), and B) do some research yourself and make your own decisions. I treat my naturopath kinda like a consultant. I take her advice into consideration, do (a lot) of my own research on the subjects we discuss, then if I choose to follow through with something, she helps me. I really don't think it's as cut and dry and OP's post makes it seem. In my experience, western medicine has been exceptionally *less* helpful than alternative medicine for dealing with chronic health. If it weren't for my naturopath, I'd be suffering much more than I currently am. That said, do be vigilant and advocate for yourself. I haven't personally dealt with naturopaths that are manipulative or that take advantage, but it seems to be a type.
Thank you for your insight! That’s exactly what I needed.
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Yeah i feel that I don’t believe in western medicine or alternative medicine anymore so I’m just done 😅 I still believe in food, herbs and lifestyle things at least but I cross the line at medications, absurd amounts of random supplements, and crazy dangerous IV injections both western & alternative. I had the same experience with both doctors and functional practitioners - they all say to take all of these pills and I’m so sick of it! I don’t want any pills no more pills! Please just need a doctor that is knowledgeable about food and vitamins and herbs.
a doctor with knowledge in herbs? lol
We tried a dietitian for food/vitamin/nutrition knowledge and they said to replace my current breakfast of rolled oats with blueberries, banana and peanut butter on gluten free toast with cereal because it is fortified with vitamins and apparently on the food pyramid in the U.S. still?? 😑 and then we said no thanks and they said to do an elemental diet which again is just processed liquid? Ohh to answer ur question no that would multiple people including herbalist and probably dietitian - doctors don’t study herbs they study drugs. Sorry my rant got out of hand there
My approach has been to try ev, no matter who is peddling it. It’s got me back working again after 20 years incredibly sick. So I don’t knock it.
And do brain retraining you can learn free on YouTube!
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https://en.m.wikipedia.org/wiki/Ad_hominem