Advice on alternative to medications for a newbie

Yep, but my doc and my pharmacist say/“know” nothing about zinc sfx! - Same with everything I’ve taken, whether med, supp or herb. They all only concentrate on the fx. I don’t trust anyone any more who doesn’t immediately tell me the sfx, and none of them do. The reasoning is patients’ll get the sfx if they hear or read about them (nocebo effect). That’s not my experience, after all I’ve tried, deliberately not looking at the sfx before. I get the sfx, and used to look them up too late unless my skin or seizures were exploding. Now I try to know beforehand what to expect and can do something about it quickly. I get less sfx now than before, because I start treatments more carefully.
I’ve had docs prescribing the same med again, and upon my objection a similar one, even after having said I’d gotten considerable sfx… None know anything about how my seizures work except my neurologist, none about how my skin works, none about my acid & IBSD (none about my back, bladder etc.).
And if at all, docs or pharmacists may know a few of the 10s of sfx of meds, which wdnt help me even if they recognized them (I often get the more unusual ones), and they know hardly any of the sfx of supps & herbs, not even those they recommend, like my GP recommends zinc without measuring the zinc level first.
The problem is also that they only tell me it might be 1 of the sfx of a certain med if I ask exactly that. If I just complain of a symptom, they will first give me something new to put on the pile (meds or operations). If I ask if it cd be a sf of something, they will need a reminder and long look at what I am taking, incl. supps&herbs, altho it’s not much. And if I say what I am suspecting, then I’ll still usually be better or just as well off using the web. But to get that far, I need to know what I am looking for…
And I’m not bashing here. As I keep saying: Modern medicine is quite good, but only for easy monocausal conditions, and that’s not its fault, it’s just the human body is much more complicated. Functional / alternative / holistic medicine etc. may be better at seeing the complexity, but still doesn’t have ‘enough’ answers and often dabbles in vagueness and a too fixed mindset. I say that from always having had a very complicated human body myself, the mystery of which medicine of all types has unravelled only a small bit, despite my 45+ docs in 1.5y, but also having had quite a lot of insight into what medical training entails and also how practitioners think and what they know, as I can talk with them at eye-level because of that. It’s often a case of me educating them so they can educate me back with background I don’t yet know.

So yes, it’s only DIY sleuthing :male_detective: for me, watching my body (fairly) closely and using the experience of people (more users, occasionally practitioners) on the web and trying everything sensible carefully with a sense of proportion - with success, not like before. But talking with my docs/practitioners about all of it, and using their occasional ideas too. OK, even their last ideas weren’t good for me, but I’m always up for trying something new…

BTW I have difficulty separating complementary from main/med therapies for FM considering

  • there are no therapies that are considered to reliably help a lot of us (2021 meta-analysis)
  • some complementary methods like exercise have just as much evidence as a few meds.
  • only 3 meds approved for fibro by the FDA, and these only help a small part of us
  • my mainstream rheum./fibro clinic didn’t use meds, only complementary methods.
    I’d argue only things like homeopathy or aromatherapy are not evidence-based enough, so complementary, whilst most things named in this thread like yoga / aqua fit & similar exercises / diet (e.g. Mediterranean!), and also zinc, do have some evidence from mainstream studies recommending them, the first 3 for FM, zinc for pain.

SHOCK AND AWE!!! (OK, maybe not shock, but bigtime AWE for sure.)

What a thoroughly thoughtful, nuanced and multi-dimensional response. But I think that’s what we’ve come to expect from JayCS.

Our usual caveat and chorus,
“Tell your doctors (and your pharmacist too) about everything you take and do, especially in the case of supplements.”
is our normal, average everyday garden-variety response when people start to talk about supplements. What we absolutely cannot have is people trying this and trying that just because they read it on Ben’s Friends. And then (heaven forbid) when they come to really bad grief, blame it on us. Nope, we need to keep this community supportive and safe.

But we couldn’t call you a “normal, average everyday garden-variety” member! Your extremely complex and interesting views, thoughts and self-experimentation, is uniquely you, and I doubt that anybody here who would read them would mistake what you say as an open invitation to go ahead and experiment with this or with that.

Thank you as always, JayCS, for the interesting things that you share with us. :heart_eyes:

Seenie from ModSupport

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Or the most exotic plant in the garden… :hibiscus:
But not the type that swamps out everything else… I need you all to survive… :hugs:

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@JayCS You definitely have an amazing way you convey your thoughts and It’s very refreshing to read. Fibromyalgia is such a complex disease that really nobody understands. There are members who display symptoms and doctors are quick to say “You have Fibromyalgia (FM)” when it could be something else. How can there be things out there like medications and therapies for FM if they don’t have a clinical test for it except for pushing on some pressure points? I have had a transplanted heart and kidney and the kidneys had died due to toxicity from the anti-rejection medication for the heart. I’m just learning that the medication I’m on now for the heart and the kidney is bad on the kidneys just like the last drug only less harsh. I must of blocked that out years ago. My point is: We can’t even get medications for transplants that aren’t so harsh on the kidneys you need a kidney transplant once, twice, maybe three times (Like a friend of mine) so how can they even help us with FM? I can’t take supplements or mess around with them and on here I don’t recommend people messing with them unless talking to their doctor as Seenie suggested. It’s safer for everyone that way. Hopefully people have doctors they trust and if they don’t like their doctor they always have the power to find another one. There are things that work for FM like exercise and we all know when we don’t exercise the FM symptoms are worse. What you eat plays a role into it as well like you mentioned. If you eat Chinese food one day prepared to feel like crud the next lol. I am on painkillers for pain and it’s not a long-term goal to be on them still. It’s better for my body to be off them, better for my body to eat better and exercise and I’m at the point in my life where I now have to because i’m having fluid gain issues. Even with the low salt restrictions (under 2000mg) its a struggle.

How have you been @JayCS ? How have you been feeling? What do you do to keep busy?
Hope this finds you well,

Davey
Ben’s Friends Fibro Moderator

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Your comments @JayCS about Zinc rare right on. Heres the thing about FMS that usually gets lost in all the discussions. Its a SYNDROME (thus the S in FMS) not a disease. The two are often confused but all a syndrome is, is a collection of symptoms common to a group of people. If you go beyond that, the argument (I hesitate to say discussion because it usually is not) starts.

So is it real - yes all too real. So is it a small fiber neuropathy - sometimes. Is it autoimmune,Sjögren, sarcoidosis, paraproteinemia, paraneoplastic syndrome, or diabetes mellitus - sometimes Is it a Koebner disease, sometimes. Is it hormonal - sometimes. Does it have a neuropsychological root - sometimes. Is it a dietary deficiency - sometimes but not often. Thus the problem with a syndrome vs a disease. You know what going on but until someone figures out the cause which can be many its nigh on impossible to treat. Even more difficult is treating they symptoms. For few analgesia works, but for more it make thins worse. Same with anticonvulsants, psychopharmaceuticals and even the 3 “approved” drugs.

Though across our communities we have diseases that are FAR worse in their effect, but in my own opinion is that the worst to have is FMS. At least with the others you most know exactly what you have, you know mostly how to treat it or know you CAN’T treat it. You aren’t in the dark or gap which at least gives you the opportunity to get a hold of it and live life. All too often the FMS patient DOESN’T have that opportunity.

One fact does remain and its uncomfortable. Alternative medicines from the nutrition store, your neighborhood Naturopath, herbologist are inconsistently compounded (In my town we have the largest producer of these things in the USA. My son in law is a production manager. You would be amazed at the number of “brand bottles” the same stuff goes into Some is sold at the dollar tree, and the same at High End Nutritionist boutiques. The effect more often than not when somebody declares success with XYZ is prolly real, it is also anecdotal and even more often placebo. In fact it is estimated that 40% of mainline medical treatment INCLUDING SURGERY is placebo (have you heard much about knee scopes recently once the bread and butter of ortho owned surgery centers?)

The one thing that is working (at least in terms of patient relief) is a modern pain management practice especially those that rarely if ever use analgesics meaning Pill Mills don’t cut the mustard. Between PT OT, counseling mindfulness, exercise health diets etc etc and medical treatment of course patients wh have gone years without relief for a wide rang od issues ar getting some pain relief or at least getting a hold on their pain and living some sort of relief. As @JayCS indicated some of this stuff could be considered Alternative. I don’t. I consider it common sense. (and save the money I would spend on supplements for good scotch)

Its sorta like the blonde (my apologies to all blondes) Who goes to the doctor an complains that every-time she poke herself she experiences excruciating pain. She goes to to several doctors who can’t duplicate the experience and send he on her way “its all in your head” she goes to another who says quit poking yourself and you’ll quit getting the pain. Well she can’t so she goes to another who listens to her and has an AH-HA moment. He says lets take a look at your FINGER. And sure enough she has a broken finger.

When we start putting our providers in a box. our condition goes right along with us and stays there. You go to a neurologist for headaches, a GI for a bellyache, an ortho for a sore joint you are putting yourself in a box and these days all to often it is our PCPs putting us there and closing the lid. There is a time and place for specialists. But I have come to learn since my long ago days as a provider that for conditions such as FMS, rheumatolgy (the detectives of the medical world) and Pain management (the doers of the medical world) is likely ones best bet. These guys are concerned with you symptoms first (not as data points) and the cause next (they do look). They know when to call the specialist and they know when to send you to the treadmill.

TJ

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LOL you have such a way of putting it. Yes, we want you to survive as well! And better than survive, THRIVE!

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Hi Davey, thanks for such a long post - I’m with you!

On comparing transplant meds to FM I first of all empathize with how much you must’ve been thru!
Of course transplanting is a really big one, so I’m not surprised good meds aren’t possible (yet?)
Don’t misunderstand: I do talk with my docs about my trials (- however leave them far behind…)
I’ve had to - but also been blessed with the energy to - “fight” / work hard for a happy life, fibro is praps the last step making me “feel” it’s time to stop outside struggle & focus on self-care now.
I wish you all the power to hang on in, with eating, exercising, painkillers, transplant meds…

Well, fullest details about where I’m at on my daily blog, but I like the challenge of any questions, so in short: My long-acquired optimism is unbent. After a few small miracles and a lot of hard work (2x2h/wk since November) “under ACUpressure”, my successful trials with GABA since April are branching out to all amino acids. After a few days’ sfx from 2 overdoses I’m back to perhaps normalizing my sleep. I feel like my own supp test guinea pig, Alex in Wonderland. What keeps me very busy is the load of research, forum / “fibro-work” (avg. 6h/d at the moment) plus 2h/d of physio-type self-treatments, but it’s self-caring & resting & excited in the process. Whilst my daily table tennis, listening to & buying unusual new music on bandcamp, recording own tracks & talking with my wife takes me into different worlds. I love coming home to fibro ideas and self-care, but reckon once I’ve got the fullest handle on it possible today I can start some new otherwise exciting phase in which FM is only a part. Unless I find a good way to make myself more useful using what I’ve learnt. Probably better for me than trying to work more than 10h/wk again in my pretty stressful job.

All the best & thanks for promoting my long babbles to being “refreshing” - aimed at & hoped for, but self-doubt keeps me ever sceptical… :upside_down_face:

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TJ - Wow, thanks for your many thoughts, wise & honest & thought-provoking words…
This is so long I’m hiding details… total reading time estimate 8-10’.

FM syndrome praps turning out as FM-subgroups...

I’d add/specify that the syndrome character and variety of cause hypotheses & biomarkers involved will I believe mean some kind of subgroups to be developed, which’ll reflect how we’re all different and also praps end up no longer being called a syndrome but a set of overlapping diseases either for itself as ‘fibromyalgia spectrum disorder’ or overlapping with similar chronic pain diseases. That’s why it may be better to call it FM, not FMS, after all/in future.

Fibro being such a hard nut to crack has made a full-time detective of me

What you say about it being the worst to have FM combined with my answer to Davey directly above explains why this hard nut to crack has become so time-consuming, but also interesting to me - integrating Seenie’s comment: Sherlock with Dr. Watson wdve had such fun. But apart from 2 docs named as inspiration for the character, recalling his single-mindedness, his need for cocaine & stuff and slandering of women let’s end that comparison quickly!

'Diagnosing' 2 rare diseases in a boy 15y ago may have catalyzed that career

Does remind me of the fact tho that I “diagnosed” a combination of 2 rare diseases in a boy I once knew 15y ago with a strange rocking movement when sitting, strange hearing problems, strange coughing… Primary ciliary diskinesia PCD coupled with situs inversus (organs wrong sided). After ?5h of web research I suggested it to the parents, they told their doc and it was confirmed, leading to as adequate treatment as was possible for the poor lad.
Probably as said starting as self-help due to back, skin & GI in my youth tho.

TJ: Inconsistencies agreed, but wdnt the same supp everywhere provide consistency?

I fully agree that substances like alternative “meds”, i.e. supps & herbs, may be inconsistently compounded, and that may cause some differences in effect and also placebo, as can the care of a doc, incl. real or sham surgery. Hence having to try different brands and different docs.
However I can’t follow your example of the same stuff going into different brand bottles, wdnt that to the contrary mean you’ll always get good quality, regardless of price?

Flaws in the placebo effect theory, like flaws in many studies??

The placebo effect is an interesting phenomenon. OTOH I don’t care too much, placebo is fine with me. OTO I distrust the evidence for it, e.g. the main book which brought up the idea 1955 contained no evidence for it, so is it perhaps itself a self-fulfilling prophecy? Someone prodding with a broken finger? And when I look closely I often find how badly medical trials / studies are constructed and their conclusions if far-reaching then outrageously funny, like the ones recently claiming that 40% of fibromites have ADHD, simply due to the similarity of symptoms with fibro fog… (I can immediately detect that because I know ADHD inside out, educated myself on that as well as quite a few other psychological disorders in my family by reading every book and website and mailing list post there was at the time. BTW my awareness and criticisim of medical trials probably somehow come from my dad being a scientist and having a pretty mathematical mind, as well as studying cancer med trials, albeit 30y ago.)

My mindset is distrustful, so my actions careful, but trustful & self-confident & self-effective.

My mindset is distrustful
We should know that we don’t know, and be accordingly careful with what we say and do.
but my action trustful - also because of that
We should carefully try everything we can, to improve, who knows what will happen. :wink:

Glad we agree on common sense treatments not being alternative / complementary.

Supps are waste if they don't improve blood levels, or like my amino acids.

I wd also agree on not taking supps if they don’t make any difference. Same for meds & herbs.
I’m only taking supps necessary for my blood levels (D3 & selene) and ones that really make a difference, after having tried all of those recommended and they didn’t.
My amino acids are a completely different category as they are pimping stiffness, energy, sleep, bladder pain and much more in ways only dreamt of, leaving every other substance far behind, with slight sfx that stop inside of a week.
Someone suggested it might be placebo the other day. So what.

Alternatives to Scotch O.o; Giving, faith, 'I', 'free' decisions, life: aren't we all just a bit ... placebo

Good Scotch and similar exuberances show I’m obviously worse off than most, as these wd smash me to the floor with Thor’s hammer. But I’m spending “that” money on supporting good artists and other good causes. Also a good placebo effect… :wink: Like my faith. Like the concept that we are ‘I’. Or that we consciously & ‘freely’ decide upon actions. And life in general.
Aren’t we all just a bit … placebo… :joy:

Exotic plant - due to an eccentric body with eccentric mind & energy

BTW that’s probably the exotic plant I am - because I’ve always had an eccentric body, but also an eccentric mind & eccentric energy to cope with it…

Prodding & pointing broken finger wisdom about us all, incl. docs & researchers

I love the joke about the … dark-haired man :wink: … with the prodding broken finger. I do agree fully with the point of the story, love the 3-fold reactions. Blonde jokes makes things sound as if it’s only someone silly, as if we’re only gleefully laughing about others, but actually this is all of us (as if you didn’t know… Anyone NOT once forgotten to put the plug in before using something and not realizing?).
And docs and researchers being humans too (yes! even on the job) I’d also continue my line by adding that when they prod us (and especially themselves) they often have a broken finger themselves, and some don’t realize it. I can often see it, but don’t blame them. My prodding pointing finger is broken too. So when I point my finger at others, I try to remember that 3 other fingers on my hand are pointing towards myself.
Reminds me of the mind whack that we/they often forget that things can be somatopsychic, not just psychosomatic, it’s a circle, not a one-way street (e.g. depression as a result of pain, not cause).

Pity when Pill & Drip Mills seem nec, hope of preventing that happening less & less.

Again I’m pleased we agree about modern pain management, too. It’s so unfortunate that it’s hard for many of us to get up the motivation early enough to get their act(ivity) together against the pain, wait until it gets harder and harder. The clinic I was at was like you suggest, whilst the pain docs where I live seem like a Pill and Drip Mill (“Water Mill”, only the stuff wasn’t water), with alternatives taking up 10% or less of the time. Seeing rows of people there tied to their drips, made my heart cry. But I think it’ll need more of a mind revolution in our societies to get away from that more…

My best doc thinks outside the box. I help my GP & he tries to help me.

BTW one of the best guys and gals … ehm docs … I talk with is my sleep lab psychiatrist - after the first meeting him seemingly disappointingly clichéing FM is often a rubbish bin diagnosis, it immediately got better, esp. after checking other things incl. doing a spinal tap. And I can now talk with him about GABA but he also gives thought to something like my bladder pain, he thinks outside of the box which is exactly what my body needs. Lucky me! :four_leaf_clover:
My GP doesn’t close the lid but is very thankful I have someone where he is out of his depth. We tried once: I asked him about ashwagandha, he asked me to mail him my info, but he cdnt find the time to read it. So now I just update him on my new failures & successes and he hardtaps it 2-fingered into his machine like a reporter - or praps Dr. Watson… I do like him, but on avg. 50% of the appointment time I’m his agony aunt, like a good friend. But he does do everything I ask him to and it’s interesting for me to listen unless I need to be off which he can never remember… And it’s useful that he’s upfront on thyroid issues.

My docs were good, I was just faster. My wife pushes me a bit - so it's not just me...

Reading of your excellent analysis of (ideal) provider roles, I think I have to apologize for my docs & the clinic not helping me: it was simply because I was always already knowing & trying the best things or better than they were suggesting… I was slow starting off, my wife needed to push, but then I focused all my attention to that and turned into a Road Runner. And despite that she tried to push me again the other day, seeing my pain too much… so it’s not all just me. I could soothe her by comparisons. :relieved:

Inconsistencies in the manufacture are the result oF process. The product is made in a huge drum with a blade. It’s essentially a huge food processor. The active ingredients are added by dumping in a barrel of them then the filler is added. They turn the thing on let it run stop it. pull out an amount send it to the next stage where it’s either put in capsules or pressed into tablets. That’s the higher dose. They add more filler to the original batch for the next lower dose repeating till they get to the lower dose.We are talking perhaps a gallon can of active product to 30 or more gallons of filler for the highest dose There is no way test the mix its powder mixed with powder. So basically you end up with 90 or so gallons of product whose dosage strength has been measured manually by a near minimum wage worker who also mixes and Blends the product manually. The barrels it comes from are pretty cool. We use them for a number of things when he snags them. Great for dry storage. So basically you have a small amount of dry powder mixed with a large amount of dry powder. Imagine how many pills would come out of a couple of 55 gallon drums, and what your chances of each of those pills having the same composition. The pills are then packaged and labeled per company. I have seen assure (the dollar tree brand) and puritans pride (very pricy stuff) from the same batch more than once. Has it ever made you wonder how multivitamin can have 20 or more vitamins in it with dosages the same as some individual vitamin pills and the pills are all the same size? That’s how little active ingredient (by volume) is in one supplement tab.

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Very interesting!
I make my amino acid capsules myself using pure powder and empty capsules (singly without a “machine”). Since it doesn’t seem to make a difference, I don’t bother wheighing the exact amount and shake it a bit so it’s compressed. I’d think the variance may be +/-10% at the most and what’s more important that seems exact enough. From what you’re saying this’d be more exact than any ready made tablet? Whilst ready made capsules of only one substance (in which you can see the amount) are maybe a bit more exact than my way? Capsules with only one substance sounds like the best way to make sure that anyone’s taking at least roughly the same amount? That’s how I’ve always taken most of my supps, to be able to juggle around better.
Any misconception there, e.g. about the purity of the powder?

Oh lordie you got TJ going @ModSupport LOL. You found your match. You are welcome @JayCS. Yes I think we all have some self-doubt but honestly you outdo yourself in your posts. So much knowledge. I don’t have the brain power to understand it all either but you are on a different cognitive level than me and I’m jealous. Lol. Thank you for your kind words by the way. GABA didn’t work for me. I’m in Lyrica and I’ve been on for many years. A lot of members on here don’t like it for it’s side effects. I think I need a change. We shall see.

Davey

What you doing is very close to pharmaceutical manufacturing. A reasonable comparison is making a cake. You could take oil flour, eggs dump them together stir them bake and frost it (just like making a capsule) call it a cake and with a lot of luck you might get something that tastes like cake. But a real cakewhere every ingredients carefully measured each step adding an ingredient at a time in order, blending them so each step renders a new product until it becomes a batter that produces an incredible cake that every mouthful is the same.

TJ

Thanks Davey! :smiley:
Just to clarify: I think you mean gabapentin/Neurontin (sometimes abbreviated “gaba”), which like pregabalin/Lyrica I wdnt tolerate, like almost all meds. These are derived from GABA, the stuff I’m having success with, which is an amino acid, a neurotransmitter called gamma-amino butyric acid, which is a body substance, but can also be used as a supp if you have low serotonin levels, and has negligible sfx only for a short time.

You are right @JayCS I was thinking the med. I don’t know all your acronyms yet LOL

You lobbed it high there, had me thinking maybe I shd be weighing the mg more exactly - for a minute…
But I think… your cake comparison might be playing right into my hands :face_with_monocle:

No manufactured cakes for me, ever, just self-made!

I hate the taste and my belly hates the ingredients of manufactured cake, at most I eat small bits of self-made taste of fresh organic wholemeal bakery cake… which is the case… but transferred means…

Pharmacy cakes are "incredibly" poisonous for me: "every mouthful is the same"

My body doesn’t tolerate most stuff of pharmaceutical (med) manufacturers.
The big ones don’t make the stuff = supps I need like I need it, not the ingredients, not the amounts, neither for the fx nor to keep the sfx down… package inserts would be of no use to me, cos they can’t tell me how to get the most of it, don’t know when I should take it best, how much is best for me. All this is standardized, and all this contradicts fibro, i.e. the non-standard condition I have.

"I need cake with 2% raw cane sugar today, tomorrow with 3% honey, +50% next week..."

Thankfully I started out with 750mg of GABA, which was a good guess, then I read to take it out of the capsule and mess around with the amounts and times, according to my individual & current need, condoned, or rather recommended by my sleep lab psychiatrist. This GABA was exactly the same product as the one I had bought ready-made, I just opened the capsules. Now I’ve bought powder and maybe it’s roughly the same too, but who cares, I’m measuring out anew what is fitting to me now anyway. I’m taking 1200mg at the moment. There are no “incredible” 1200mg capsules to buy. Maybe 600. But tomorrow I may see the need to go up to 1300mg.
Now let’s take the ready-made 400mg magnesium malate capsules I take and most meds. If you want to increase or decrease a dose slightly you have a pretty unincredible opportunity - you can’t. You can double it, sometimes halve it, but not increase it by 10%. Amitriptyline in 2mg drops is one of the few exceptions - one doc sensibly allowed it, my main pain doc “forced” me to take the 10mg and then 25mg incredible pills supplied for by the industry. May the pharmacy force be with you, she believed. I ended up with my 8th side effect, increased focal seizures - the last straw to convince me not to try anything like that again (I think it was the 6th or 7th med I tried).
Of course I can’t measure 2% of 500mg, but I can judge 50mg which is 2,5% of the 2000mg I’m taking.

Getting sfx under control for everyone is not exactly the fortitude of pharmacy.

I bought theanine (& tryptophan) as tablets, got so strong GI-sfx, but pulverizing, reducing the dose and encapsulating myself worked. I don’t care about filling agents, because how I work is just in relation to the dose before, which needs to be adjusted as needed.
Adjusting amounts, times and adding herbal remedies got all other sfx under control. This is only partly possible with manufactured stuff, esp. meds.

There is "no recipe" for fibro... And this isn't "a piece of cake"... My life depends upon it.

There is no recipe for this manufacturer or myself to follow, just vague ideas from experiences of others and trial & error - ain’t that fibro ey… plus the acquired intuitive sense of grandma playing by taste and composing a special cake for her grandson who only likes the apple crumble with a bit less sugar and cinnamon than everyone else.

(I’ve been putting med & supp manufacturers into one box, for the sake of similar arguments.)
But I’ve now realized my capsules are incredibly more precise than anything you can buy! TVM… :upside_down_face:
(I’m still intrigued if I can find out how exact I am in comparison.)

I was only comparing manufacturing. Aside from two of meds, everything I take comes from a compounding pharmacy including common OTC meds, so dosages are exact but also gave some custom tweaks.The two that don’t other than the fact they can’t be compounded are either injectable or IV meds which are tweakable. Not sure it’s always necessary but its habit. My grandfather was one of the first licensed Pharmacists in our state He made everything. When he started (1908) it was the pharmacists who prescribed medication based on the physicians diagnosis. One of his recipes worked so well that it became one if the first OTC pharmaceuticals and its still being sold today. Another (cough syrup) was also sold OTC for a long time but because of the codeine in it was reformulated and name changed. He regretted those two moves till the day he died (1964). He felt that he and others ultimately hurt patients by starting the whole patent medicine thing. He didn’t train to count pills, and doctors didn’t train to make medicine. (FWIW he was one of the Mayo Brothers personal componders and they would consult as to what was needed)

Those days are coming back. The surgical pain management team has prescribing authority in many medical centers and the role is expanding. I had a shoulder replacement a few years back considered one of the most painful replacement surgeries. Through personalized medication from that team. I took zero narcotics. From re covers to discharge. (The gas passers still Iike them for a number of reasons)

Precision medicine is expanding daily. Of course it’s expensive. A single treatment for a form of muscular Dystrophy costs just a hair over 500K, but then it also cures it. AI conditions are next.

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Don’t misunderstand on Precision medicine I’m not talking about the cancer stuff that fails 96% of the time. You might check: broker, enhancer, stabilizer, and amplifier compounds), genome editing by homologous recombination, zinc finger nucleases, TALEN (transcription activator-like effector nuclease), CRISPR-Cas9 (clustered regularly interspaced short palindromic repeats-CRISPR-associated endonuclease, and generally gene therapy.

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The zinc story goes on…
Firstly, my acupressurist developed an enormous (5’‘x4’’?) erysipelas (a form of cellulitis) on her lower leg, incl. a blister more than an inch high. She had to take 3 types of antibiotics to get the levels down. So her supposed ‘zinc sfx’ were likely due to that coming on. She still blames the zinc & one other thing tho for weakening her immune system which is usually good.

Now I’m considering taking zinc, cos my blood levels are roughly in the middle, not high, and it helps with the GABA/serotonin etc. where I’m not really making further progress.

I’ve taken the product she used back (I’d ordered it for her) and was trying to find out how to take it without getting the same. She had read about OptiZinc being best, meaning specially bioavailable zinc monomethionine & asked me if I could order it. Looking at the amazon product reviews closely, I’ve now slightly embarrassingly realized that these are very critical of the fact that the manufacturer recommends taking half tablets, but that this isn’t possible, as using knives as suggested pulverizes or thirds or quarters or whatever. Everyone is asking why they don’t just provide half tablets instead. Doubt my acupressurist halved them…

As to me: The possible zinc sfx I often get from everything are heartburn, indigestion & skin reactions.
I’ve gone back to looking what the zinc recommendation for GABA etc. said: It’s to keep calcium down, as that increases glutamate. Doesn’t make sense to take it now, esp. as balancing out the GABA with glutamate seems better for me. It says there that magnesium does a similar job and I’m taking 3 sorts of that anyway, around 240mg. Phew.

To wrap topics of this thread up a bit more and direct it back more generally to the title:

Alternatives to medications take up most of my treatment list here Fibromyalgia References: Triggers, Symptoms, Treatments - & Hunting & Tracking them, mentioning all things for the mind, physio, diets, environmental changes, (meds,) supps & herbs I’ve seen mentioned for fibro.

Boswellia was mentioned early on in the thread: This is a lot of research I’ve just done (hidden in the details), plus a short summary up front: Boswellia / Frankincense

Zinc mentioned positively above, but as also mentioned as perhaps overdosed by my acupressurist: She has however after a month or so gone back to it without any problems, this time however with the normal recommended dose. She is still suffering from high inflammation after the erysipelas, so trying everything she can get, incl. now Boswellia (which is why I had a look at that and saw this thread again…)

Doses, Overdoses, Micro-doses (specks/fairy dust): Most of us have heard of LDN = low-dose naltrexone (opioid antagonist), and praps low-dose fentanyl, working for pain for some, incl. FM, without all the disadvantages. Some people also only need specks / fairy dust amounts of amino acids to get the complete fx without the sfx, or less, as Trudy Scott reports. We’re not talking about less fx here, we’re talking about full fx. My sleep lab psychiatrist also recommended trying lowering and splitting up my doses of the amino acid GABA. However this resulted in a return of the symptoms, for which I was unprepared at first. Then I started increasing bit by bit - like Trudy Scott recommends - which got me severe overdoses of serotonin (due to taking too much GABA) and later on dopamine (taking too much glutamine) and so showed me where my doses are. Researching more, I’ve realized that amino acids are about balancing out serotonin and dopamine as well as looking for interactions like with everything. Then I went back a 3rd time to melatonin, of which a normal dose had zombified me in April, altho so many people get fx without sfx from it. After a few weeks of trials I realized that even 5% (1mcg, hard to measure: about a pin head of the tablets I’d got) was zombifying me to an extent that I was not feeling at all well at night, despite still being up a few times. OTOH - before trying this - increasing passiflora a little higher than the recommended dose (4x289mg) is the only thing up to now that gives me pretty good sleep, whilst adding a bit of theanine (2x100mg) every now makes it shorter and more effective. Then again I started off last year with high doses of vitamin B12 (5mg jabs) after normal amounts didn’t help, which made my B12 rocket, but didn’t help my FM one bit.
So I’ve been realizing about dosage that
:one: “recommended doses” may be a good start (e.g. don’t overdose zinc!) but things with no fx may have to be dosed a little higher and things with fx but too many sfx may have to be dosed a lot lower, and
:two: if something is working fairly well it might help to play around with the times you are taking it (granted you know how it works, e.g. with meals or not, like serrapeptase (30’ before, 2h after), with other meds or not, like mumijo)
:three: overdosing and underdosing some supps & herbs is part of the “game” and taking them always needs close watching by yourself and people in the know.
As I only have bad experiences with most meds, I don’t aside from LDN know how often it’ll happen that a low dose will help. But the pain killers I tried didn’t change my pain (and I’ve heard that quite a bit), and caused severe sfx on skin, gut and seizures, so I’d assume: not often.

Zinc dosage and forms

Both my GP and my cardio have plugged me taking zinc and my blood levels are slightly under average. So I’ve been taking zinc picolinate, my acupressurist zinc methionate (OptiZinc), recommended to her, also recommended by Trudy Scott. After now researching, as the picolinate was getting empty I found that zinc bisglycinate is a newer compound said to be even more bioavailable than methionate, gluconate and those slightly more than the picolinate. So like magnesium it’s again more complicated, as zinc alone can’t be taken and it can be compounded with all kinds of chelates etc. (maybe like magnesium organic, chelated and anorganic).
Now I’ve been taking it aside from meals, but on my new bisglycinate it says take it with meals, so I’ve checked that and it’s if my GI doesn’t tolerate it that I shd take it with meals. It’s higher dosed than before 25mg instead of 15mg and more bioavailable, so let’s see… - I’ll take it now all the same. … Whoops, no: stomach rumbling/gnarling at me 5x in a row, and starting to get hungry, metallic taste. Had to get up again to eat something, that was OK, and I could doze/sleep another hour. What do I learn from that: Do what the supplier suggests first, esp. when first starting and even more so on a day where I have to do something like work/get up earlier…
As I’d already thought: the dose is higher, plus it’s more bioavailable, additionally glycinate is not picolinate. And I already take magnesium glycinate, which wakes me up due to the glycinate, that could get a problem now too… didn’t I think.

Unsure again, cos of GI stuff today after first try, which’d fit to the ‘rare sfx’ above. So more:
Trudy Scott’s zinc challenge is if tastes stronge/metallic/yucky (try periodically) you don’t need it.
White spots on your finger nails and sweet taste in your mouth may mean you do, as do “joints popping or aching, and that’s because of low zinc. The other common things that we see with low zinc is this poor appetite, poor sense of smell, poor sense of taste and then the stretch marks on the skin and white flecks on the nails.”
If taking it doesn’t increase it, that might come from sugar, stress, , too little stomach acid, exercise, nuts & copper in it.
It helps with GABA/serotonin, sleep, fog,
Low zinc might be <70.
With symptoms of a cold you need to take it inside the first 24h.
Some sites say 40mg should be completely OK, for CoV people are saying take up to 110mg/d.
Mayoclinic/IBM Micromedex say “Zinc supplements are most effective if they are taken at least 1 hour before or 2 hours after meals. However, if zinc supplements cause stomach upset, they may be taken with a meal. You should tell your health care professional if you are taking your zinc supplement with meals.” They say 15mg is enough…