A challenge to everyone here

[[Jd...]]

Everyone likes a good challenge so I will begin with an opinion and not necessarily a fact but I have a strong opinion and so far have yet to be proven wrong.  I am of the opinion that a large portion (but agree not all) protracted members have an imbalance of some sort in their folate level , or their vitamin b12 level or one of the many categories of iron studies which are ferretin , serum iron , tibc , iron saturation and also vitamin d

 

I do firmly believe that benzo wd yes indeed does cause damage to us however I believe there is a hematological reasoning for why we didn’t heal and I believe the solution is in our blood. There are many other vitamins and minerals it could be like copper or magnesium but I feel I’m seeing a trend that most commonly it’s the ones listed above.  
 

so registered nurse here who yes also has gone through this living hell of wd but also have some insight from a hematologist friend and here to hopefully help at least one or two and if my assumption is correct quite a few more.  
 

so prove me wrong post those lab results if you got them!!!

[[Na...]]

My psych likes to prescribe methyl folate and always does bloodwork for it before he starts. I came in at 14 ng/ml and the normal range is 2-20.  He did put me on Deplin (methyl folate) as he likes to see his patients on the very high end of normal and I ended up at like 22 ng/ml.

I saw no difference before or after the Deplin. 

[[be...]]

My doc checks my vitamin levels every six months.

My B12 is high end..Iron is good

Magnesium and calcium are good. All were good except D3..it was low. It always is...but I can't supplement with it because it's over stimulating to my CNS. I take a very small amount of it from time to time...its the best I can do for now.

While I don't doubt some people here are low in important vitamins and minerals and it might be making their wd journey worse...I just don't feel it's the case for everyone.I do believe it's important to get those levels checked though...because you just never know what's causing what in this process.

It 

[[Jd...]]

I think a lot of people “think” their levels are good because their dr told them they were and also our lack of understanding in them.   Iron ESPECIALLY.  A lot of drs will just check one and say “yep all is good” and have no clue about iron either.   
 

the challenge is not to post what your dr told you but to post what your values are.    In reality it’s a challenge but it’s to get you to do a deeper dive into your blood work.    Most on here think their blood is good but I have a high suspicion that’s not the case 

[[Jd...]]

I’ll use iron as example.     Ferretin is not really iron but it’s where your iron is stored.   However ferretin can also go up when there is high levels of inflammation.   Serum iron can go up or down depending upon what got eaten recently   There is tibc which is binding capacity and also iron saturation.    All the iron studies have to be compared to each other.  As example if your ferretin is high yet iron saturation is low. Or maybe they didn’t even do an iron saturation.  Is your ferretin high because your iron status is good or is it high because of that cold you had last month.      
I took my drs advice and believed him too and just thought I was protracted too.    
I mean this in a friendly yet challenging way lol

post Your labs or it didn’t happen lol

Edited September 12, 2023 by [Jd...]

[[Jd...]]

Nathan Arizona.   If you haven’t done the genetic testing to know wether you need the methyl’s or not.  Did you know methyl’s cause very bad side effects and anxiety in many people ?  Without knowing your mthfr status it’s hard to know wether you need methyl folate or not.   Also folate taken without b12 often masks b12 deficiency.   Your psych is just guessing that you need the methyl’s.   Is folic acid folate methyl folate or folinic acid what you should be taking is all but a guess 🤷‍♂️ seems minuscule because we are not taught we should be focusing on these things. We are taught it’s not important when it’s far from the truth 

[[Jd...]]

Nathan your folate should be around 20 or slightly above. That’s a good lab result.  However good folate like yours masks b12 deficiencies also the very folate you are taking may contribute to side effects and what appears to be wd if you’re taking the kind not suitable for you.   Mthfr which everyone talks about is actually a gene mutation affecting folate.   Also b vitamins are funny in that it takes 4 months to be off supplements to know your real value. As example I’m aiming for a b12 of 800-900 my level was 325.  So now that I’m supplementing I realize getting a b12 on me is useless my b12 can be 1000-2000 🤷‍♂️ doesn’t matter because it’s now a faulty lab that will read artificially high for 4 months.  Homocysteine is lab needed if supplementing b12 etc etc. 

so your folate is good 

do you know your b12 (are you supplementing b12 also if so it’s falsely elevated)

serum iron

tibc

iron sat

ferretin 

[[Jd...]]

The reality is there are 120 members on this protracted board.  This post has 40 views so far.  Two people have stepped up to this friendly challenge but with incomplete blood work.   There may be one or two that are willing to post all the labs are (not say they are good )

b12 , folate, vit d, serum iron, ferretin, iron saturation and tibc

but I would bet most on here aren’t and it’s because you believe it doesn’t matter.  There’s NO WAY a low or high iron saturation or b12 can be causing THIS much pain right ?????   You are way wrong to assume that and most people on here and I was guilty of it to assume their levels are fine and whatever their b12 folate or iron status is there is no connection to why they haven’t healed yet.  There may be 1 or 2 who step up to this challenge but I assure you 85% who read this post will not because you know you haven’t actually checked. 

[[re...]]

@[Jd...]

The burden is on you to prove your assertion, not on everyone else to disprove it. You can't expect everyone to waste their time rebutting your strong opinion and firm belief, unsupported by any evidence. Show us the science.

Edited September 12, 2023 by [re...]
Made it pithier

[[Ne...]]

 

All tests taken on February 22, 2023 unless noted:

132/77 Blood Pressure   26.75 BMI   155 lb 13.8 oz Weight     5' 4" Height    98.4 °F Temperature - Female - 69 years old

 

CALCIUM

Normal range: 8.5 - 10.7 mg/dL

9.0 - Me

MAGNESIUM

Normal range: 1.7 - 2.8 mg/dL

2.0 - Me

VIT B12

Normal range: 200 - 910 pg/mL

1,009 - Me
775 – November 2, 2022 - Me

FOLATE

Normal value: >=5.4 ng/mL

Value

>20.0 - Me

   19.2 – November 2, 2022 - Me

 

HOMOCYSTEINE, SUBST CONC, SERPLAS, QN

Normal range: 5 - 15 mcmol/L

6 - Me

 

25-HYDROXYVITAMIN D – November 2, 2022

Normal range: 30 - 100 ng/mL

48 - Me

 

February 22, 2023: CBC (Complete Blood Count)

Normal range is listed first:

WBC'S AUTO: 4.0-11.0 - Me 7.1

Normal range: 4.0 - 11.0 x1000/mcL

411RBC, AUTO: 3.70-5.20 - Me 4.98

Normal range: 3.70 - 5.20 Mill/mcL

3.75.2HGB: 11.5 – 16.0 - Me 14.1

Normal range: 11.5 - 16.0 g/dL

11.516HCT, AUTO: 35.0-47.0 - Me 42.8

Normal range: 35.0 - 47.0 %

354MCV: 81.0-99.0 - Me 85.9

Normal range: 81.0 - 99.0 fL

8MCH:25.0-35.0 - Me 28.3

Normal range: 25.0 - 35.0 pg/cell

253MCHC:30.0-35.0 - Me 32.9

Normal range: 30.0 - 35.0 g/dL

303RDW, BLOOD:11.5-16.0 - Me 13.3

Normal range: 11.5 - 16.0 %

11.516PLATELETS, AUTOMATED COUNT:130-400 - Me 203

Normal range: 1

 

 

Normal range: 4.0 - 11.0 x1000/mcL

411

 

 

 

 

[[Jd...]]

Neverme those are actually pretty good numbers.   No iron studies however your b12 and folate are good.  Vit d is pretty good also.     Curious if you’ve ever had any iron studies.  You’d be the first to disprove this theory.  Although my thoughts on this are that MOST on here are deficient in one of the four  You are doing good on 3 only wonder about iron.  Iron unfortunately is an entire panel though. But none the less pretty impressive numbers and I’d venture to say your iron might even be ok with your mch mcv doing good and usually if you are low in iron one of the others dips also

[[Jd...]]

Redevan.  It’s called a challenge for a reason lol.   If you aren’t interested in bettering your health then that’s on you.   Zero bad can come of making your iron b12 folate and vit d in the optimal range.  However much bad can happen if you skoff at the idea that those matter.  Choice is yours friend 

[[Jd...]]

Neverme.   Here’s my theory on what’s going on with us.    I do believe benzos cause is damage.  True neurological damage. Not to the extent of say a stroke but none the less.  Let’s say I believe in B I N D.  Benzo induced neurological damage.  But it’s how we heal from that I’m noticing trends.  Everyone as you read this take a deep breath and realize I’m generalizing and no need to point out that one person you know who is the anomaly.  But what I notice is the young seem to have a higher ratio of quick recoveries on average.  The ratio tips to the older age bracket in the older ones.  Sure there are a few but the RATIO starts tipping the other way.   I feel that it’s just as simple as younger people heal quicker than when you’re older.  Be honest do you think you would heal from a hip fracture as quickly now as you would have in your 20s? Who in their 20s even has hip fractures 

as we get older our bodies start malfunctioning and one of the unfortunate things it does is stops absorbing things correctly and we form nutritional deficiencies.   I’ve seen that quite common in this group and I feel it is hindering or slowing down the healing process

you put your age in your signature so I hope it’s ok to comment on that as I’m no spring chicken either but at almost 70 there are two other things that if it’s been years and years you’ve been battling this wd and haven’t healed yet.  I’d have your dr check igf-1 levels and glutathione levels.   Both are deeply involved in healing.  My post despite what it seems is aimed at helping others because I have suffered tremendously and am what I’d considered almost out of the tunnel and hate the idea of others suffering as well.   If your iron is fine then the most important labs for healing actually check out and I’d investigate glutathione and hgh 

[[Ne...]]

3 minutes ago, [[J...] said:

Neverme those are actually pretty good numbers.   No iron studies however your b12 and folate are good.  Vit d is pretty good also.     Curious if you’ve ever had any iron studies.  You’d be the first to disprove this theory.  Although my thoughts on this are that MOST on here are deficient in one of the four  You are doing good on 3 only wonder about iron.  Iron unfortunately is an entire panel though. But none the less pretty impressive numbers and I’d venture to say your iron might even be ok with your mch mcv doing good and usually if you are low in iron one of the others dips also

I'm not an intellect at all so I thank you very, very much for the insight and your wisdom!!  I am in my 7th month of a severe setback.  The mental torture is the worst with constant anxiety and all hellish symptoms.  I am lethargic and weak and have some pain, but it's nothing if I could have the mental torture go away and feel joy and pleasure again. I had none of these symptoms prior to the med prescribed to me for sleep.  Never even knew what anxiety was. 

I took 85 pills from start to taper (6 months) and 8 years later have suffered 6 setbacks that keep getting worse.  I just don't understand it at all!  I was back to being me prior to this setback for less than 9 months and truly had thought my 6th setback that lasted 18 months was my last one.  I currently don't take any meds at all not even aspirin.  In this setback as well as my others, I have to force feed.  Just the thought of food makes me sick and normally I love to eat.  I force organic, grass-fed beef every night so I'm guessing my iron is okay.  I eat veggies with organic yeast flakes every night, too.  For breakfast I eat two poached eggs with one whole avocado every day.  Lunch is a cup of blueberries with nuts and seeds.  This is all forced. 

I've been supplementing with Methyl B12 for a while.  Mega Food product.  Should I be concerned my B12 is too high?

[[Ne...]]

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

Neverme.   Here’s my theory on what’s going on with us.    I do believe benzos cause is damage.  True neurological damage. Not to the extent of say a stroke but none the less.  Let’s say I believe in B I N D.  Benzo induced neurological damage.  But it’s how we heal from that I’m noticing trends.  Everyone as you read this take a deep breath and realize I’m generalizing and no need to point out that one person you know who is the anomaly.  But what I notice is the young seem to have a higher ratio of quick recoveries on average.  The ratio tips to the older age bracket in the older ones.  Sure there are a few but the RATIO starts tipping the other way.   I feel that it’s just as simple as younger people heal quicker than when you’re older.  Be honest do you think you would heal from a hip fracture as quickly now as you would have in your 20s? Who in their 20s even has hip fractures 

as we get older our bodies start malfunctioning and one of the unfortunate things it does is stops absorbing things correctly and we form nutritional deficiencies.   I’ve seen that quite common in this group and I feel it is hindering or slowing down the healing process

you put your age in your signature so I hope it’s ok to comment on that as I’m no spring chicken either but at almost 70 there are two other things that if it’s been years and years you’ve been battling this wd and haven’t healed yet.  I’d have your dr check igf-1 levels and glutathione levels.   Both are deeply involved in healing.  My post despite what it seems is aimed at helping others because I have suffered tremendously and am what I’d considered almost out of the tunnel and hate the idea of others suffering as well.   If your iron is fine then the most important labs for healing actually check out and I’d investigate glutathione and hgh 

Appreciate you soooo much!!!  I'm going to get those done as soon as possible!  You give me hope!!!!

[[Jd...]]

Ok so this may not work but it very much might. MANY people don’t handle methyl’s good at all and it causes a lot of anxiety in SOME people.  I’m not sure if you know your mthfr status or not but I know a lot can’t handle the anxiety that comes with methyl bs.    I take hydroxy b and folinic acid. (Not folic acid) both are active forms but no methyl’s.  Seeking health has the hydroxy b12 and folinic acid combo as well as their b minus. They seem to be the best company I’ve heard of with up to date stuff on b vitamins 

and no your b12 is actually not high if supplementing.  It takes 4 MONTHS to clear out b12 to get an accurate reading.  Most people aim for 1000-1500 if they currently are supplementing.  I would however consider switching types and try hydroxycobalmin over methylcobamin and folinic acid to see if it helps   Never hurts if you’re taking it anyways 

[[re...]]

25 minutes ago, [[J...] said:

Redevan.  It’s called a challenge for a reason lol.   If you aren’t interested in bettering your health then that’s on you.   Zero bad can come of making your iron b12 folate and vit d in the optimal range.  However much bad can happen if you skoff at the idea that those matter.  Choice is yours friend 

@[Jd...] No, your "challenge" was not about "bettering your health". It was about your "strong opinion" and "firm belief" that benzo-withdrawal symptoms were somehow aggravated by some problem with folates and/or Vitamin B12, iron, and/or other nutrients. And then you offered not a shred of evidence to support your "strong opinion" and "firm belief". You just "challenged" us to disprove it. But you've given us literally nothing to disprove.

If you can't produce some scientific evidence to support your "strong opinion" and "firm belief", then I take it that there is no such evidence, and that you are perfectly content to believe things with no evidence at all - which would be a disturbing fault in anyone, but especially in a registered nurse. Do you understand how irrational that kind of thinking is?

Show us the studies that support your "strong opinion" and "firm belief", or else just drop it. Without that kind of scientific evidence, you might as well be "challenging" us to disprove your "strong opinion" and "firm belief" that benzo-withdrawal symptoms are caused by evil leprechauns jumping out of defective cereal boxes.

[[Jd...]]

Well sorry but I’m not going to do all the work for you.  And as you should know.  There are a total of 0 studies done on people in protracted status lol you might as well ask me for studies on lock ness monster dna lol.   Anywho you chose not to take the challenge.  It’s no worries.  There are 50 other people who read this post just like you and have no idea what their lab values are and think it’s insignificant just like you.  

[[Ne...]]

28 minutes ago, [[J...] said:

Ok so this may not work but it very much might. MANY people don’t handle methyl’s good at all and it causes a lot of anxiety in SOME people.  I’m not sure if you know your mthfr status or not but I know a lot can’t handle the anxiety that comes with methyl bs.    I take hydroxy b and folinic acid. (Not folic acid) both are active forms but no methyl’s.  Seeking health has the hydroxy b12 and folinic acid combo as well as their b minus. They seem to be the best company I’ve heard of with up to date stuff on b vitamins 

and no your b12 is actually not high if supplementing.  It takes 4 MONTHS to clear out b12 to get an accurate reading.  Most people aim for 1000-1500 if they currently are supplementing.  I would however consider switching types and try hydroxycobalmin over methylcobamin and folinic acid to see if it helps   Never hurts if you’re taking it anyways 

I will look into your suggestion.  These are the ingredients in what I've been taking - Vitamin B6 (as pyridoxal-5-phosphate with organic brown rice)8 mg, Folate (as L-5-methyltetrahydrofolate with broccoli) 340 mcg DFE, Vitamin B12 (as methylcobalamin with S. cerevisiae) 500 mcg, Beetroot 225 mg. Other Ingredients: Microcrystalline cellulose, stearic acid, silicon dioxide, rice protein, organic brown rice, hypromellose, autolyzed yeast extract.

I wonder if I should stop taking and see what happens???

[[Jd...]]

No I wouldn’t stop taking them.  Maybe next time you order just try the hydroxycobalmin and folinic acid.   I see a lot of people on the vit b12 boards saying methyl b cause them exteme anxiety.  I personally never tried it figured why not just go for the hydroxy and folinic acid first. 

[[Jd...]]

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” 

[[Na...]]

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

Nathan your folate should be around 20 or slightly above. That’s a good lab result.  However good folate like yours masks b12 deficiencies also the very folate you are taking may contribute to side effects and what appears to be wd if you’re taking the kind not suitable for you.   Mthfr which everyone talks about is actually a gene mutation affecting folate.   Also b vitamins are funny in that it takes 4 months to be off supplements to know your real value. As example I’m aiming for a b12 of 800-900 my level was 325.  So now that I’m supplementing I realize getting a b12 on me is useless my b12 can be 1000-2000 🤷‍♂️ doesn’t matter because it’s now a faulty lab that will read artificially high for 4 months.  Homocysteine is lab needed if supplementing b12 etc etc. 

so your folate is good 

do you know your b12 (are you supplementing b12 also if so it’s falsely elevated)

serum iron

tibc

iron sat

ferretin 

 

Yes, all those have been checked, all are mid range or above. My B12 was actually out of range high because I supplement it so I had to back off a bit.

I have say, I'm become very skeptical of the idea that a significant portion of us are suffering from a specific or general vitamin deficiency. Probably because I've been at this for 8 years, I've delved into more blood labs than I care to remember and tried every vitamin and supplement known to man and I've had really nothing to show for it.

I feel like we're just twisting knobs because we see a knob to twist and we're desperate. Believe me, I know I've done that.

I think you're doing the right thing by asking for lab results instead of just assuming that people are deficient in folate or whatever and suggesting that people take some particular dose of a supplement.

But ... Benzo Buddies has been around for a long time now. Thousands and thousands of people have been through the horrors of benzo withdrawal here, some of which became long term and a lot of people have done lots of lab work and taken lots of supplements. I feel like I've personally kept a lot of the medical labs and supplement makers employed over the years. If it were as simple as something like low folate I feel like someone would have figured that out by now, spread the word, and we'd all be talking about the miracles of folate. Or any other supplement for that matter. But who knows, I'd love for your theory to be true.

I don't want to be negative and think it's fine to ask questions. But just keep in mind, a lot of people have had a lot of theories along these lines over the years and so far they haven't really panned out.

Are you just interested in people that are long term post benzo withdrawal suffers in particular? If you're interested in the benzo withdrawal population in general we probably ought to move the thread to a place with a wider audience. But if you just want the info from long haulers, you're in the right place.

[[Jd...]]

You could be right in the 5 people that I asked for specific labs out of that out of 5 all 5 came back abnormal showing abnormalities and deficiencies. Maybe it’s coincidence ?  I’m still under the impression it isn’t though.   I’ll be honest I feel of the 4 labs I mentioned it’s one more so than even others and that is iron.   Of the 5 people I’m referring to who are ACTIVE members on this board 4 are deficient and 1 is in overload.  I do think b12 and folate can also cause these problems too so I added them in but I’ve STILL YET HAD ONE PERSON tell me their iron saturation level or tibc or ferretin. Just as you are skeptical that there could be any significant correlation im also skeptical that it’s being looked at very closely.  The only thing anyone has said was neverme who did post labs and ironically missing the one panel I actually am semi zeroing in on. However did mention taking methyl b tabs which do give some people bad bad anxiety.  From looking at her other labs it appears they MAY be ok but that’s still a guess mch and mcv are weak indicators of iron status and in no way as definitive as a COMPLETE iron panel.     In a day and age where just about everyone has a portal to their lab work.   I’m also not suggesting anyone take anything. As one of the 5 I’m referring to has iron overload.  Wouldn’t be safe to tell them to take extra. 
you say you’d love for my theory to be true.   What if it is.  What if there is a correlation in SOME respectable percentage. Maybe not everyone but a respectable amount to to warrant telling people to check these.   So far 5 people who are protracted have found out they have iron issues.  4 severely deficient 1 in overload.  I do theorize it can happen with b12 and folate also though. Maybe to a lesser degree vitamin d 

but still as this thread continues   No one has posted their ferretin + serum iron + tibc+ iron saturation   
 

i Guess since yesterdays conversation wasn’t in private and anyone can see the public conversation where another person didn’t really believe this to be true and realized they actually are in iron overload having hemochromatosis all the while they were told and thought their labs was fine   Go on over to the alternative therapies group and look for the recent thread “head pressure”  that person didn’t initially believe either  

im not saying this applies to everyone but I do believe it’s more than just the 5 I know is my belief 

 

 

 

[[Jd...]]

Nathan another thing while you supplement b12 and folate. These labs become irrelevant. Your dr who prescribed them while he means well he’s a psych dr not a hematologist.  B12 and folate levels should be high for up to 4 months after you quit.   So having a high reading is what is to be expected and not to take you off.  That is why “Neverme” dr was smart enough to do a homocysteine level that NOW becomes the appropriate lab to draw in face of b12 supplementation.   With that said if your dr is wanting you to take methyl folate.   Were you also taking methyl b12?    Google it if you feel I’m blowing smoke but methyl b vitamins cause lots of anxiety and bad reactions in quite a few people.    If you are like me and don’t know whether you have the mthfr or compt mutation or any of the others then the most universally accepted b is hydroxy and folinic acid both are “active” and both are NOT methyl.   It may work for you may not.  At this stage of the game what is there to lose in say. Switching your b12 and folate to non methylated and getting a full iron panel.  I’m gonna assume if you know your folate and b12 levels that if you had a recent iron panel you would have told me those numbers as well.   Have you had a recent full iron panel ?

[[Jd...]]

“Neverme” on closer observation of your blood work I notice your labs are right down the middle.  Folate and b12 on the high end which is actually where you want them.  But look at mch and mcv.  Those two are not dead center like you others.  It’s a subtle difference but it’s there.  Mch and mcv are the two labs in a cbc diff that are related to iron stores.   Your labs do look good however those two numbers do suggest the possibility of a mildly low iron POSSIBLY.  Never hurts to have an iron panel if you haven’t had a recent one 🤷‍♂️