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A challenge to everyone here


[Jd...]

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4 hours ago, [[J...] said:

And redevan.  If you’re inquiring WHY I have this suspicion or belief or theory it’s because I’ve seen it in multiple people here on BB.  I won’t disclose any names however there are now 5 people who did stumble upon the fact that they have pretty significant imbalances.  I feel it would be a breach of their privacy or id spit out a few names of long time veterans I’m chatting with privately in messages to prove my point.  Along with that I have my own personal experience. Thought I was in protracted wd realized I’m severely deficient in iron.  Along with that I’ve been educating myself along with the help of a hematologist and realize the symptoms of an iron or b12 imbalance can cause neuropathic pain dizziness headaches air hunger anxiety depression exteme lethargy and a whole host of symptoms that look Eerily familiar on here.  So it’s a combination of personal experiences of myself and 5 unarmed people on here along with a hematologist who has been schooling me on just how common and sinisiter these imbalances can be.     But this is just a challenge not a debate.  As with benzos or really any part of the brain no one is 100% positive so let’s neither of us pretend to be scholars and scientist here.  However what I said is that I do feel there are a decent amount of people here that have those deficiencies. 5 people have already realized that their blood was way off. 5 protracted members now have a plan of action instead of just waiting another year.  My theory is that there is more than just these 5.   I do not believe this is the only 5 people out of the 120 on this sub forum and so if I’m way off and only 5 more people learn something about themselves and discover they do have an imbalance and heal faster than the next 10 years.  I accomplished my mission. But if you want to believe that there is absolutely no connection that’s a choice you have because I can’t find the page number in “Benzo encyclopedia vol 8” 

Well at last, something resembling evidence. Not a lot, but something.

So what you're actually saying is this: You've come across several people on this forum whose symptoms might have been caused, at least in part, by some imbalances in folates, B12, and iron; and you're trying to gather more information from other buddies, to see if this is a widespread phenomenon that might explain some protracted withdrawal symptoms. You're not actually challenging us to disprove anything. You're challenging us to help you research this question. What you have is not actually a "strong opinion" or a "firm belief" but merely a working hypothesis. If that's what you're doing, I think that's perfectly legitimate. I'm not saying it's going to lead to any great discoveries, but it might - and I hope it does.

I doubt that I have any labs that would help with your research, but I'll look, and if I have any, I'll post them here.

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What you seem to be saying @[Jd...] is "people with lingering benzo withdrawal issues" have any number of potential "imbalances" in various parameters of their blood lab reports. The parameters you've mentioned so far are "folate, B12, ferretin , serum iron , tibc , iron saturation and also vitamin D". Some of these you seem to say you want to be high, others mid-range, etc.

The problem with this approach is that if I randomly sample 100 people and look at those 7 parameters, most people will have most parameters towards mid range, but some of their values will come in towards the bottom end, others towards the top, and some people may even show specific parameters out of range high or low. Even if they've never consumed a benzo in their life and have no symptoms. That's just the nature of the statistical spread of these sorts of things.

What you need to have a real theory is a rationale. Something along the lines of "Benzo use causes these biological changes that show up as alterations in these various parameters that are revealed by these specific blood test results". Just noticing that some long term benzo users have this particular value a bit high, or that value a bit low isn't all that significant if you'd see the same sort of spread in the general population. You'd literally need a large population of long haul benzo sufferers and a control group of non-benzo users to look and see if there are any statistical differences between these two groups. A fine idea, but not something we're likely to get any time soon.

I'm fine with the discussion, but let me also caution and remind people that this discussion isn't "medical advice". This is a more or less anonymous forum so whether someone is qualified to read and interpret a lab report is unknown to us.

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@[Na...] @[Jd...]

I think Nathan is right. A good scientific hypothesis must include a rationale. It could be the one Nathan suggested, or it could be something as simple as this: Benzo-withdrawal symptoms are worse for those with nutritional deficiencies. That seems almost self-evident. After all, isn't everything worse for those with nutritional deficiencies? Why would benzo-withdrawal be the exception? But still, it's an interesting line of inquiry to see how common this might be among the protracted buddies.

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I really don't want to discourage you @[Jd...]. However .... if you peruse the old forum you'll find others have investigated low iron, B12, folate, etc. etc.

Benzo Buddies goes back almost 20 years now (I think it was started in 2004). A lot of people have been through these doors and its very difficult to find something of this nature that hasn't occurred to someone before and been investigated. Often multiple times.

Just keep that in mind. But, maybe you'll find a twist on it that previous people have not and you'll unlock something useful.

I certainly hope so for all our sakes.

 

Edited by [Na...]
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Kiwiaurora.    Is getting screened for medical problems really “alternative treatments” at least any more than some of the other suggestions on here like cbd?  Having your dr do an iron panel is alternative treatment?

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Nathan.   Here’s specifically what I noticed and I’ve sorta expanded it.   I’ve taken my experience … as example my number one symptom is persistent head pressure and pain. Now this pain and pressure isn’t off and on. It’s been every single day for 2 years. And my wife (thankfully) insisted I go to a neurologist and I skoffed and rolled my eyes and said “honey everyone on the message board benzo buddies says this is just typical of healing” wow do I feel like a fool now because despite my eye rolling my neurologist said “most of the time someone has NON STOP pressure and pain it is a vitamin imbalance a mineral imbalance and or a hormonal imbalance and I rolled my eyes as I rolled my sleeve up and said “my dr has already checked these but knock yourself out”.   She smirked as she said “I told you so” rightfully so.   I was blown away and so I looked deeper into my own blood work and here all this time my blood wasn’t quite as good as I thought it was.   I joined the fb group “the iron protocol” and here I see people complaining of head pressure and pain air hunger restless leg severe severe anxiety and depression debilitating exhaustion.  All of which echoes the same things said on here.  I start taking my iron as I’m told and wtf I progress more in a couple months of taking iron than I had in 2 years.     Fast forward I’m still sometimes coming in here and when I see people stumbling in here talking about the dreaded head pressure I message them “hey this may not work for you but lemme tell you my story.  And say “is it really gonna kill you to get your blood drawn”.   4 people in a row all came back insanely low iron. Now granted this is in the “head pressure population”.  Prior to this group moving over here I was exploring this further and more openly suggesting anyone with non stop debilitating head pressure if it’s lasted a few years get that iron panel.  Well at work (I’m an rn) and I started suggesting my dr do iron panels when a patient is about to be put on an ssri for anxiety or depression and found an alarming amount were not true anxiety or depression but imbalances and this “anxiety or depression” evaporated once their iron was up.   Fast forward I now have a patient who is dying with cancer he himself is an oncologist double boarded as a hemotomogist and says our culture has a silent epidemic of iron deficiency.  Obviously naysayers that doesn’t mean everyone , however there is an appreciable amount with this problem. And apparently there are a lot of people put on anxiety meds and insomnia meds that never needed it.   Look at the symptoms of low iron.   Anxiety and insomnia are two of many. 
look at this thread alone.  Yes many drs have dialed in on the fact that there are b12 and folate deficiencies in this culture Nathan’s dr put him on it and Neverme dr put her on it. And I’m shocked to see is even aware of the fact that now a homocysteine is necessary.  Yet still crickets when it comes to who has a FULL iron panel.  It’s a lab that is so rarely done yet I believe is more prevalent than most know about.  The drs seem to have figured out b12 and folate is a dietary problem these days.  Funny thing about b12 and folate is that you can take b12 and folate with food without food take b12 and folate together yet with iron you can’t take iron with calcium or tea or coffee it’s best taken on an empty stomach ppi h2 meds and meds for acid reflux block absorption curcumin and in general TONS of things block iron.   So while our medical system has grown its awareness of b12 and b9 (folate) deficiencies there still is very little knowledge about iron. Particularly because it’s has tons and tons of things way more than b12 and folate that block absorption but also it’s pretty easy to tell if you’re having an issue with b12 or folate with iron it’s more complicated and you had better have a DEEP DEEP understanding of it and I know first hand these drs simply don’t know nor are they aware that an iron deficiency causes a lot of the symptoms for why someone would be put on a benzo or ssri to begin with. I in no way am suggesting that protracted status is just in your head the way probably most of your drs tell you however I am saying I venture to bet an “appreciable amount” here probably does have an imbalance that would greatly speed up their recovery.  

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5 hours ago, [[K...] said:

Possibly this thread would do better in the alternative  treatments and supplement board maybe.

Yeah, I've asked the question earlier. If @[Jd...] only wants to address long haul people then I guess this is the right place. If he just wants to talk to anyone post benzo withdrawal there are probably better venues.

It's all up to jdoe.

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Sorry well yeah I do primarily mean this for those who are protracted.   During the early days the long length of symptoms are just part of what is expected.    But after so long let’s say 2 years you either have a choice of just continuing to wait year after year after year or at least try to figure out if there is a reason for why it’s taking you longer to heal. 
 

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13 hours ago, [[N...] said:

Yeah, I've asked the question earlier. If @[Jd...] only wants to address long haul people then I guess this is the right place. If he just wants to talk to anyone post benzo withdrawal there are probably better venues.

It's all up to jdoe.

Yes Nathan agree, however at 9years off  and protracted  and finding many drs dont acknowledge Benzo withdrawal and their different reading of blood tests  or even reading of them  or what they individually focus on etc  its often more about listening to our own body as we go down this road of healing. 

 Also what works for one often causes problems for others as I have found in the 9 years I have listened to the wisdom of others on the BB forum and even found many off those suggestions caused me more problems than solutions,  so it  is personal choices and much  research along with trial and error  and the last board had many experiences  re supplements and blood tests etc 

Age etc plays into all this process also.

 Im still searching as to if there is a solution or does the body eventually balance back after we are off long term benzos. 

Hope jdoe finds his solutions also 

Edited by [Ki...]
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On 13/09/2023 at 07:10, [[J...] said:

Sorry well yeah I do primarily mean this for those who are protracted.   During the early days the long length of symptoms are just part of what is expected.    But after so long let’s say 2 years you either have a choice of just continuing to wait year after year after year or at least try to figure out if there is a reason for why it’s taking you longer to heal. 
 

 

Sorry to bug you again, but what is your take on my B12 tests for the last few years.  In November of 2022, I was even supplementing.

VIT B12

Data table

Date

Value

Normal Range

Feb 22, 2023

1,009pg/mL

200 - 910 pg/mL   Beginning of current setback

Nov 2, 2022

775pg/mL

200 - 910 pg/mL   WELL!!!

Apr 29, 2021

1,123pg/mL

200 - 910 pg/mL    4th month of severe setback

Jun 19, 2017

1,038pg/mL

   3 mo. setback/then healed mentally but 6 mos later still weak

Aug 18, 2015

924pg/mL

   Taper over 6/1/15 – VERY SICK

Sep 24, 2013

759pg/mL

  Pre-benzos

 

 

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Your b12 looks fine remember if you are supplementing the lab will be off and give a false high reading your nov reading was 775. That’s perfect and prob because you had been supplementing before.    You are managing your b12 perfectly.  The only change I would make is switch to a non methyl b12 and folate to see if that decreases anxiety.  Other than that get a full iron panel.  Ferretin serum iron tibc and iron saturation 

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10 hours ago, [[J...] said:

Your b12 looks fine remember if you are supplementing the lab will be off and give a false high reading your nov reading was 775. That’s perfect and prob because you had been supplementing before.    You are managing your b12 perfectly.  The only change I would make is switch to a non methyl b12 and folate to see if that decreases anxiety.  Other than that get a full iron panel.  Ferretin serum iron tibc and iron saturation 

@[Jd...]

This post clearly steps over the line into dispensing medical advice. You are reading other member's lab reports and giving supplement recommendations based on those reports. In other words, the sort of thing a doctor would do, which would be inappropriate on this site even if you were a doctor.

Please read the guidelines below and refrain from the in the future.

 

 

Edited by [Na...]
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18 hours ago, [[N...] said:

Sorry to bug you again, but what is your take on my B12 tests for the last few years.  In November of 2022, I was even supplementing.

VIT B12

Data table

Date

Value

Normal Range

Feb 22, 2023

1,009pg/mL

200 - 910 pg/mL   Beginning of current setback

Nov 2, 2022

775pg/mL

200 - 910 pg/mL   WELL!!!

Apr 29, 2021

1,123pg/mL

200 - 910 pg/mL    4th month of severe setback

Jun 19, 2017

1,038pg/mL

   3 mo. setback/then healed mentally but 6 mos later still weak

Aug 18, 2015

924pg/mL

   Taper over 6/1/15 – VERY SICK

Sep 24, 2013

759pg/mL

  Pre-benzos

@[Ne...] - BenzoBuddies has a policy of this site not being a place where the dispensing of direct medical advice is permitted. While you have not given any advice, posting lab results and asking for it sets the stage for this to happen. I'd ask that you refrain from this in the future.

Please review the site policy on this below:

 

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?????  This site is devoted towards giving medical and mental health advice isnt It.   We commonly discuss using cbd for pain , magnesium for sleep , and people are always asking medical advice about how fast they should taper and we quote a dr dr Ashton but often give our own opinions on if that did or didn’t work for them and when to hold or continue. At least the old board did.   So with the new board anytime someone asks a mental health question or asks if it’s safe to taper off their 5mg of klonopin in 2 weeks like their dr said  we should respond “you need to speak with your mental health professional” because if we contradict what their dr said that is definitely giving medical advice.  Maybe the new board is different ? Because I see a lot of advice given on here which directly contradicts what their own dr or psychiatrist says to do.    
not being a jerk but asking me not to give advice on VITAMINS. When I am a registered nurse is pretty hypocritical when tons of people with zero medical background tell people to disregard what their primary care physician says.  Isn’t it ?

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@[Jd...] - You can tell us about your own experience with vitamins or with anything else, but you should not give diagnoses or prescriptive advice, even if you're a nurse or a physician. Every physician and nurse on line makes that kind of disclaimer, that their observations should not be taken as medical advice or diagnoses, that the reader or viewer should see their own doctor for that. This is a legal liability issue for Benzo Buddies.

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Seriously all bs aside not tryin to be a jerk.   But we literally tell people about how safe and effective psychodelics are in wd. We are giving people advice on medications that really are pretty untested on a widespread scale.  NAD+.  Hell I’ve even told people how to use hgh.  We dispense medical advice all the time.  Almost everyone does and a LOT would be completely frowned upon by their dr.   Can you imagine telling your psych dr that you’re doing psychedelics and nad from the terrible wd effects of the benzos you took 8 years ago. Lol they’d prob lock us all up.   
my advice actually does line up with with mainstream medical.  Ask your dr if once taking vitamin b 12 does it artificially and incorrectly give a false high reading and therefore now a homocysteine level should probably be checked.  This doesn’t contradict nor go against the grain of main stream medical much like some of the things that aren’t considered “dispensing” like Amanita  what a normal dr would say is a poisonous mushroom. (Ps I love Amanita too) but you get that I’m saying 

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So in the future I should just say “well in my experience in myself as well as thousands of patients in the last 2 decades and also the registersted pharmacist who is sitting beside of me  right now lol - a b12 of 1000-1500 is fine IF you curently are supplementing   Rather if you need confirmation get a homocysteine level”    Got it 

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I think it’s just a sad day when someone who has a medical background AND ALSO has gone through the living hell that many have gone through on here gives advice it’s actually shunned.    
I had akasthasia  terribly.  22 hours per day slept 2 hours per night.   Agoraphobia couldn’t walk around my block.   Monophobia couldn’t be left alone longer than 5 mins debilitating head pressure and really just an arm length long list of symtoms and was out of work didn’t know how I was going to pay my bills couldn’t even drive to pick my kids up from school and thought I was permanently disabled. And I just got back from driving to and from Miami to go on a cruise my memory and feelings are back and I’m able to do a quite complex job and worked 84 hours last week.      And I feel I have stumbled upon something.   (Do you notice yet how   NO.  O N E has posted an iron panel????? I noticed ;)) do you remember the one lab I say I think I notice more of a correlation in and just threw b12 and folate in because I know they can cause nasty symptoms too vitamin d i dunno maybe ?? Reality low vitamin. D causes rickets but whatever ..//.    
but if I were suffering and someone told me they were suffering just like me and maybe even worse and that they combined what they learned in college and years of working in medical field along with this and other boards if I was suffering.  I’d be all ears!   That’s just me though.   AS EXPECTED I figured there would be friction in this AGREED UPON THEORY but ok here it’s outright blasphemy to suggest anything other than the age old cookie cutter stuff you been reading about for the last 8 years.  
this was not meant as an educational tool for me but actually quite the opposite.  I KNEW there were very few people with recent iron panels.  I did however think more people would be more receptive to thinking or at least hanging onto a thread of hope that maybe they could be one of the ones not healing because of low or high iron levels but guess not 

Carry on guy and gals!    Just sitting back waiting year after year seems to be working out just fine!! 
 

I’m out good luck 

Edited by [Jd...]
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@[Jd...] Well first of all, you say you're a medical professional. You say you're an RN. And that may be true. But we have no way of knowing whether it's true. No one on this forum should ever rely on such unverifiable personal credentials as authority for any statement of fact. It's one thing if you want to talk about your own personal experience with these nutrients. But if you want to talk about the experience of "thousands of patients in the last 2 decades" then you should present some verifiable sources. Everything is on line these days, so this should not be a great burden on you. Just post a citation. We'll do all the drudgework of clicking on it and reading it and seeing how you know whatever it is that you claim to know.

That sort of discussion of scientific data - which is allowed here, provided it's verifiable and not dependant on your alleged credentials - has to be distinguished from diagnosis and prescription. That is never allowed here, no matter what your credentials are, even if those credentials are verifiable; and if you come across some diagnostic or prescriptive post on this forum, you should report it to a moderator. A registered nurse should understand why that is and must be the rule. I think it's very odd that you seem to be having a problem grasping the reasons for that rule.

The other thing that is allowed here is what I thought you were doing, which was conducting some sort of informal poll of the protracted members, to see how many of them might have low levels of folates or B12 or iron. While that would not come even close to being a well-designed scientific study with significant results, it might still be interesting, and might even point the way toward some useful research. It would be semi-verifiable, to the extent that we could see the data posted and not have to take your word for it. But of course, whether the posted data was itself accurate - that would not be verifiable. So such an informal survey conducted here is of very limited utility. Still, I believe this sort of thing has been allowed here before, so the rules are not really impossibly rigid, are they? The only limitation is that you not start diagnosing people and prescribing treatment for them - even if you are sitting right next to a registered pharmacist. As I said, it's remarkable that this has to be explained to a registered nurse.

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keep in mind you’re arguing Wether my advice on b12 is giving proper advice when I said she was doing a perfect job with a b12 barely over lab window WHILE SUPPLEMENTING THIS IS NOT HER NATURAL LEVEL and a homocysteine that is low (low is good if you didn’t know.   Or wait do i need a citation for THAT too lol)
 

What’s remarkable is I’m responding to someone like this is some sort of debate between medical professionals.  I guess because I wont tell my full name and give my license number that discredits me. Lol.   You keep spouting off at the mouth like you are some scientific analyst lol.  I bet you even wear your lab coat and pocket protector.  What I find “remarkable” as someone who needs soooooo much citations you can’t comprehend that neverme posted her b12 results with the ranges and 900 was the upper limit on good 

but since you need your citations “professor” I hope this will do 

https://www.medicalnewstoday.com/articles/326187

clearly states no upper limit on b12 zero toxicity 

 

https://www.insider.com/guides/health/diet-nutrition/vitamin-b12-overdose

clearly states that NO you cannot overdose on b12 as it’s a water soluble vitamin and your body excretes any excess you may take 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1283514/

and here is one saying homocysteine levels have a high level of detection in b12 deficiencies 

 

I just picked three of the most random things I when I googled.  Didn’t spend much time on this so I hope my citations meet your strict standards as a scientific analytical auditor 🤣🤣🤣🤢🤮☠️

Edited by [Jd...]
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https://www.ahajournals.org/doi/full/10.1161/01.atv.18.3.356

 

Professor i hope you will accept this late entry citation in my thesis.  I doubt I have but I hope I have.   Neverme your b12 is FINE and I get that info from looking at your homocysteine level.  Your dr was smart enough to take one because he realized your b12 serum level is off now.  Your homocysteine is great.

now with that said a nurse cannot diagnose a patient.  But lemme query the professor.  If I do a Covid swab on someone and the swab comes back as positive do I just stare blankly back at the patient and say “I have no idea if you have Covid or not im not qualified to diagnose”.   I know some 🙄 people in this thread think they know what my scope of practice is better than me but .. well.. let’s just say maybe they need their homocysteine levels checked.   
 

im out of crayons professor your lesson is over 

have a good one 

Edited by [Jd...]
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I’m at work and shouldn’t be neglecting my patients for this retardedness.     People give advice here on anything and everything including what many drs would consider recreational drugs.    Please lie and tell me I can’t find a bazillion posts people advising to take thc indica or sativa bla bla or various shrooms.  Etc etc    
y’all seriously are tripping over some vitamin b12 advice.    Really read that slower.  VITAMIN B12 advice.  Of which now that the “professor” demands citations I have clearly demonstrated there is NO WAY TO OVERDOSE B12.  It’s water soluble.    
literally ole professor citations expert losing his sh”t over B12 advice lol.  Good lord!!

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@[Jd...] Well first, I'd like to see how you would do a Covid swab on someone on line here at Benzo Buddies, because that's what we're talking about, in case you've forgotten: what you do here, on line, at Benzo Buddies, and not what you do in the hospital.

I haven't asked you or anyone to rely on my credentials, so please don't ask anyone to rely on yours. They're not verifiable. Why is that so hard to grasp?

You know, it's one thing to gather data from members and then present some overall report or analysis such as, for example: "Well, it seems like a lot of our protracted members have rather low levels of folate..." or iron, or whatever. The problem is when you start combing through each individual member's numbers and diagnosing them and prescribing action for them. That's where you crossed the line.

All you had to say to that warning from @[Na...] is "OK, fine. I understand the policy. I'll do my best to avoid diagnosing and prescribing." Very simple. But instead you launched into a series of hostile jumbled screeds. Maybe you should take a breath and read what's actually being said, instead of reacting to some perceived personal insult.

There's a perfectly legitimate and necessary policy here against diagnosing and prescribing, which is pretty much universal across all medical websites on the internet. You can piss and moan about it all you want, but it's not going to change. So why don't we just move on?

 

Edited by [re...]
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7 minutes ago, [[r...] said:

@[Jd...] Well first, I'd like to see how you would do a Covid swab on someone on line here at Benzo Buddies, because that's what we're talking about, in case you've forgotten: what you do here, on line, at Benzo Buddies, and not what you do in the hospital.

I haven't asked you or anyone to rely on my credentials, so please don't ask anyone to rely on yours. They're not verifiable. Why is that so hard to grasp?

You know, it's one thing to gather data from members and then present some overall report or analysis such as, for example: "Well, it seems like a lot of our protracted members have rather low levels of folate..." or iron, or whatever. The problem is when you start combing through each individual member's numbers and diagnosing them and prescribing action for them. That's where you crossed the line.

All you had to say to that warning from @[Na...] is "OK, fine. I understand the policy. I'll do my best to avoid diagnosing and prescribing." Very simple. But instead you launched into a series of hostile jumbled screeds. Maybe you should take a breath and read what's actually being said, instead of reacting to some perceived personal insult.

There's a perfectly legitimate and necessary policy here against diagnosing and prescribing, which is pretty much universal across all medical websites on the internet. You can piss and moan about it all you want, but it's not going to change. So why don't we just move on?

To me there is zero difference in seeing a positive Covid swab and saying YES/No you have Covid.  And someone telling me their serum b12 number and their homocysteine.   seriously what’s the difference 

if someone tells me on here  “I took a Covid swab and there is a “+” there    Or a pregnancy test etc etc.  pretty sure I can “diagnose” what their issue is even through a chat.  (As long as they aren’t lying) and then can give education on what to do from there. “Go to the dr get some chest X-rays    Or go get blood work done to get hcg lecels “

how is that any different than someone saying “I’m currently taking b12 500mcg a day and my b12 level is 1009 and my homocysteine is 6” and me saying wow you’re doing great.   I mean her dr prescribes this dose.   Her own dr seems to think it’s appropriate and because I agree and say “yeah keep doin what you’re doing and what your dr prescribes “ THAT is out of line???   You forget this is a medically prescribed regimen her dr has her on. I just 100 whole heartily agree.  I can tell this dr knows their shiot when it comes to b12 or they wouldn’t have done a homocysteine.   Had I disagreed and said “omg triple the doseage no wthe quadruple it!!! I could see the alarm.  But seriously chill tf out before you give yourself a stroke 

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