lpkayak
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posted
this movie is free to watch today. it is only and hour. you can stop and start it and watch it 15-20 min at a time if you need to
its about MOLD but much of the science and cure relates to lyme...even if you have never been in a moldy environment
i know there is some bad blood between mold and lyme docs...please dont let that prevent you from getting this info that might really help you
i am exhausted from long trip to doc yesterday so cant have conversations today im just saying watch it(cuz its free today) and pay attention to the statements about the science...it relates to us.
this is link for free screening test...its free today...not sure how long...take it...i will explain more after i sleep(...im coming back to say the test may be free for a longer time...but i had trouble setting it up on computer. i am old, foggy and not at all computer literate so some of you may not have trouble)
for those who havent rejected this i will add a few notes below in a minute
this is the first time in 5 years (out of 30 fighting lyme)that i am actually hopeful of a cure i do not use the word cure lightly if an llmd said he would cure me i would leave...but there is hope for cure...not just symptom relief
MODERATORS...I WILL TALK TO YOU TODAY IF YOU HAVE QUESTIONS OR THINK THIS DOESNT BELONG HERE IN MEDICAL...BECAUSE OF FREE FILM AND FREE SCREENING TEST I THINK ITS REALLY IMPORTANT FOR IT TO BE HERE FOR AS MANY TO SEE IT AS POSSIBLE. TUTU HAS MY NUMBER...I WILL CHECK PMS ALL DAY
ok...so we all know when we kill lyme(Bb) and many other bugs that are making us ill there are toxins left in us
its a little different with mold exposure but the same idea...mold exposure can lead to toxins inside us making body sick
there has been progress in understanding detoxing in the lyme community i have not followed this cuz it never seemed to apply to me...maybe it helped some or a lot but not all cuz we still have so many chronic
the difference between the lyme and mold communities is research has been ongoing for both for 30+ years...but reliable testing leading to clear protocols that work for everyone have not been found yet
the mold ppl have come up with testing done by quest and lab corp -so covered by ins-that reliably hones in on where and why the body is not detoxing
and they have a protocol that is helping many ppl
AND...the tests show you getting better...they show the specific info about toxins in you and it correlates with how you feel
we still do not have an accurate blood test that tells us we are cured form lyme(Bb)
they were not looking for a lyme cure but when treating mold patients found with mold tx the lyme went away
the treatment it self begins very simply and inexpensively except for doc fees that are similar to llmd fees but not as high as the top llmds
a primary or llmd can order the testing and meds for you
many get a lot better with simple first tx...those that dont follow protocol that gets a little more complicated and requires more than blood tests...scans, mris etc...but this is only if you dont improve with simple stuff in beginning
its like a pyramid ... with first part of protocol at bottom so many get better...if you dont you move up to next level etc
posted
lp thank you for elaborating on this movie. Maybe I will get to watch it today.
I know I've read that mold exposure/toxicity will hold back someone from getting from lyme and vice-versa.
I'm interested in seeing the depth of info the video presents. But I can't remove from the back of my mind that the film's creator was/is still a millionaire who's probably making a lot more after proliferating the idea of mycotoxins in coffee and selling his own "bulletproof" branded beans. It seems that he's picked up a bit of a following over the last few years.
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lpkayak
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posted
the video is similar to under our skin(imo) in that it shows some very sad situations of ppl with mold illness...that is not what is impt for me to see...i know that all too well
what is important is the references to science
i have been following the doc that did the science for 15 years he took some wrong turns...thats what science is about...but he has come up with something helpful now
unfortunatly the test i reference above is hard to set up on computer(for me) in a docs office it takes five min
it may not be hard for others more tech literate than me and is worth it...it is a screen...remember
but it llooks like it may be free forever...they ask those who want to and can to donate 10. and you get some extra record keeping things
i totally agree with you about the bulletproof site...there is some truth to most coffee being toxic...just like peanuts and corn etc...even wheat...others acknoledge this...but yeah the marketing stuff is a turn off...
he did not create this test there is a lot of documentation on the test
i have heard from some who take the test on line and results are similar to the results they get in docs office
on this whole lyme journey i have discriminated a lot...not jumped on bandwagons...after the first few frantic years...
this is one more piece of info for those who can figure out how to take it
i will get links of documentation together on here later...i just came back to tell others the free online test is not that easy to set up
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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posted
ps-re coffee. just have to say. those that know me know i love coffee, have been obese for 30 yrs, used to be athlete...pe teacher...raised 4 kids and had barn full of horses most my life. i was fat but i was active. also ate very low sugar and processed foods...and actually very low amount of food...but for 30 years could not lose and keep off weight
3 months ago a chiro told me coffee was poisoning me...by muscle testing...he did not say the brand, or explain why...he just said it was. his answer was to take a special supp when i drank coffee. i decided if coffee was poisoning me i would stop drinking it.
i began losing a lb a day the first day. (chiro said it was poisoning me...not that it was making me fat)
i leveled out to 3 lbs a week for 2 months...now it is slower...i see him again next week and he will re evaluate me
if i hadnt started losing weight immediately i probably would not have stayed off coffee. i love coffee and have given up many other things for this disease. but after 30 years to regulary lose i was not about to rock the boat
to be fair...the chiro also adjusted me and gave me a few homeopathics and supps to support thyroid and brain...so maybe it is those things that are making the weight come off
havent had thyroid tested yet but temp is now 97-98 when it was always 95-96 and BP is coming down(not dx high yet but getting there)
so who knows...its hard with so many variables but clothes two sizes smaller than what i was wearing three months ago are baggy so i am gonna keep doing what he says for now
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Tincup
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posted
Thanks for posting! Shared link with others just now.
Good to hear of your good news too!!! Hip, hip hurray!!!!
posted
Yes, it's basically the same thing, Razzle.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
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posted
I just got a note the movie is free tomorrow also
I know the vcs test is just a screen. There is a lot of new science behind this tx plan. They are not targetting lyme patients. Its just that they started seeing their mold patients have what they think are lyme sx go away with tx
Im rereading what i posted above and i didnt mean to say this tx makes lyme go away. For some ppl it makes lyme sx thst are due to toxins go away. None of it is a bb killer
Im just saying its worth exploring. I stayed away from the doc that created the vcs test for years because of what i read about his research and tx. It wasnt right for me then.
This test is free...the moldy movie is free for now. There are only ten docs trained in the country to treat with this protocol and one is 45 min from.me and will cost less than my dentist last year so for me it is worth it
Even if it doesnt work... im just putting it out here. The screening test is only the beginning. I dont know for sure if passing it means you are not a candidate for this protocol.
I cant begin to folliw or understand the science behind this. I read it in the book and again in take home papers doc gave me that were dumbed down but i still cant understand it
I understand the general idea. And if your llmd or primary orders meds you could try it and see what happens at minimal cost
The whole thing is in the book surviving mold and more info is at survivingmold.com
I recently read the book and was not impressed but thought i should check out the doc near me and i am impressed with her.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Catgirl
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posted
Great documentary Lp, thank you for posting!
Fyi, emfs make mold produce 600 times more biotoxins.
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If so, I'm screwed because I have the dreaded gene and Cholestyramine was a pretty bad experience for me.
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lpkayak
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Yes catgirl...i knew emfs can make some of us with chronic lyme worse but it was new learning for me about emf/mold
My doc went into detail with me about brains cuz i have two clised head injuries and many sx but the sx are the same as lyme so its hard to figure out
As you progress on protocol there is a brain scan called neuroquant. It is new. It is an mri without contrast but last ten min focuses on parts of brain where toxins end up
Finally my head injuries are a blessing. With thst dx ins will civer my neuroquant
The cimbo -i am seeing double a lot now...that is why i mis-type O and i so much. They are next to each other on keyboard)
The combo of neuroquant(where toxins are), bloid tests(what type of toxins and how you detox) and history and sx help doc figure out how to use protocol for you individually
All patients' tx is individualized...these docs go thru a very hard training to get certified(hopefully soon ilads will do simething similar for llmds...it will solve many problems)
So all i can tell you is if at first appt when the doc reviews your history and examins you if certain sx/hist/measurements are present you are started on welchol or csm. But it is not usually the kund a primary would guve yo. It us powdered and additive free and dosage starts reaslly low with a plan in place to prrvent constipation
Much is like lyme tx...ramping up, herxing, detixing...everyone reacts a little dufferent...so very helpful to have one of these docs suppirtung
Those first drugs are the ones that hurt ppl the least. Or docs know how to tell you to take so they hurt you the least
All tx is risk vs benefit
When i get back from nj next week i start wechol 1/8 t one time a day with large meal and some fat. 2 hrs away frim all supps, meds etc
I will be on mag and c to prevent constipation and have senna , mag citrate etc for emergencies
Depending on my reaction i will sliwly ramp up
Thats as much as i know fir now
But if you can control constipation and understand not to take binders two hours from meds...most ppl do fine
Im not a doc...i am foggy..i think i am saying all this correctly...but best is to have an environmental doc...2 nd...research yourself. Shoemaker books and site
Facebook has many mold groups with many chronic lyme ppl
Its not as friendly there as here tho...can be iverwhelming
I see this similar to parasite problem. Or mcs. I have lyme. I have mold. My body is getting overwhelmed and run down so however i canknock down.some of the load i need to do that to survive
Hope this helps. Remember im telling you what im.doing. not sure it wull work for you. Best to go to doc and educate yoursef. Goid luck
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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List of Certified Physicians-Shoemaker Protocol Name Location Shoemaker Protocol Essay
Scott W. McMahon, MD New Mexico ESSAY 1 PDF - ESSAY 2 PDF
Mary Ackerley, MD, MDH, ABIHM Arizona ESSAY 1 PDF - ESSAY 2 PDF
Raj Patel, MD California ESSAY 1 PDF - ESSAY 2 PDF
Keith Berndtson, MD Illinois ESSAY 1 PDF - ESSAY 2 PDF
Robin Thomson, ND Montana ESSAY 1 PDF - ESSAY 2 PDF
Sonia Rapaport, MD North Carolina ESSAY 1 PDF - ESSAY 2 PDF
Dave W. Ou, MD Georgia ESSAY 1 PDF - ESSAY 2 PDF
Carla Brook, CFP Montana ESSAY 1 PDF - ESSAY 2 PDF
Sandeep Gupta, MD Australia ESSAY 1 PDF - ESSAY 2 PDF
Margaret DiTulio, APRN, FNP, MS, MBA New Hampshire ESSAY 1 PDF - ESSAY 2 PDF
i go to last one.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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droid1226
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posted
It's very likely that lyme is not the issue for a lot of us, but has made us hyper allergic to a lot of things including gluten & more frequently IMO, mold.
lpkayak
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posted
Just to clarify there is a difference between mold toxicity and mold allergy. The detox protocols i am referring to have to do with toxicity
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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droid1226
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posted
The Dr. Sh trained dr that I saw was the same price as my lyme dr but the measures asked of me were too much.
Obviously, it's for my own good so he had good intentions and an incredibly high success rate. He started me on Welchol, then Cholestyramine after that didn't work. But there was mold in my house, so I moved, then there was mold in my car, so I sold it...
I do think this is the way I'm going to get better, but I can't afford it right now. The treatment & prices were reasonable but the lengths you have to go to fight toxicity or allergy is too much.
lpkayak
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posted
That is the problem so many have. Do you go to the facebook pages on mold? I thouggt they were crazy thinking i could live in a tent. Even if i could get up and down from.a cot...which i haven.Been able to do for years...how can these ppl live with ticks and skeeters and biting flies...and wild animals...and poisonous spiders and snakes.
I didnt know mold was a problem of yours all this time i have been on lymenet. I didnt know you knew.
As i read the mold sites i see horribly sad stories just like we see on here.
There seems to be more science now leading to a clear protocol that is helping many but #1 requirement is getting out of mold
Then as you work your way thru protocol you have to pay for special mold test of living space in order to get the stronger meds. At the end there are some important tests that are very expensive too
I learned about mold 15 yrs ago and realized it was a problem for me. I followed the docs writings but with work and family responsibilities it was never the right time to push for tx
The doc has learned more and changed some of his protocol and i am ready now but...i have been disabled half my life from this
Its really not just a health/medical problem. I agree the mold specialists altho expensive compared to mainstream docs are very reasonable compared to llmds. And you get a program that is science based and seems to be working
There is a big problem with greed and money making in the construction industry. There are political issues...how can it be allowed for half school buildings are full of mold when it is known that young brains become damaged and IQ is lowered with exposer
How could katrina and sandy victims be left to fend for themselves...including fighting corrupt insuranc . Companies
It is such a mess.
But all these years on LN reading your posts and knowing you are having such a hard time...i didnt know mold was part of it
On the facebook pages there are discussions about alternative housing...little houses, rvs, communities where ppl could support each other. Living in tiny mold free spaces with few possestions
Im still pushing ...on.my own...minimal family, friend understanding or support. Im not positive im.going to make it but for the first time in years i have hope.
Droid, if there is any way i can help you with research or connections please let me know.
I have a feeling many chronic lyme ppl might need to address mold to get better...but you are the first who has said you know its a problem...you know where the answer is...but just cant mske it happen yet. I think many here dont see the connection yet
Did you have blood testing done with mold specialist? Did you get any results? I have heard the chicago doc is great
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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droid1226
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posted
Kayak. I've given lyme everything but it's time to move on. I cannot keep pouring $ into it. Also I'm not seeing enough, if anyone, getting better. I do see a lot of people learning how to live w their symptoms or slightly improving. I need more. I tried the best treatment with one of the best lyme Dr's.
Dr. B treats both lyme & mold. I'm not taking anymore antibiotics except maybe rifampin just because it's part of mold protocol.
Ya, I hear you. I've had zero support through any of this. It doesn't bother me as much. I just want my life back even if I have to live in a styrofoam box in the desert for a while.
I think testing positive for lyme & co's really threw me off course. I should have addressed this off the bat. Then again, Idk that this is definitely it. I do feel like my lyme friends are invested in their lyme diagnosis because it's taken so much. I don't want to fall in that trap.
So I'm not dismissing lyme, just moving on. Plus, many of the meds have a crossover effect.
Yes, I had the c4, c3, marcons, vegf, etc..there's enough evidence to treat.
lpkayak
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posted
Shoemaker protocol-toxic mold and lyme is one
I can send you links a little later. Have to crash in chair for a bit. When i go to computer i can cut and paste
Mold avoiders is another
There are a bunch. They are closed and moderated
Im not very good with new sites and new learning. If you know facebook you might know how to search
Im pretty dull i guess. I know many of the mold ppl are not that lyme literate. I guess they started with mold and have learned about lyme from the bunch that have both
I didnt pick up on whatever discord there is between lyme and mold ppl. I know ppl dont like the #1 mold doc cuz he can.be rude. But the llmd that got me 80% better was known for bad bedside manner and i got on fine with him
By the way, after 3 yrs high dose orals most of my sx were gone but not joint pain. It was the llmd who suggested testing genes for the gene that makes bb turn on osteo arthritis. And i had it so he thought we should stop abx tx and just do herbs and support stuff. He basically let me go and i had good alt primry at the time
So our experiences were different with lyme docs
Ever since i saw alan mcdonalds slide of one bb going to cyst because of abx and then when abx were taken away a whole bunch of bb coming out of where only one was ... i felt that long term.abx just put bb in cyst form where it reproduces and when ppl stop abx all the new baby bbs come out and they dont understsnd whst is going on
I have not kept up with all the new ideas for years...i perk.up when something new comes along but when i start to learn about it if it doesnt really feel right i just let it go
Im sure if a magic cure comes along we will hear about it
To me now that i know what i know about mold toxins, lyme toxins and other bio toxins it would be foolish not to get tested and see if the protocol can help
Anyway. ..in a little bit I'll move to desk and send you links. It was lymetoo who taught me about facebook. Maybe u could pm her if i take too long.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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Razzle...yesterday i watched youtube where mercola is interviewing shoemaker. Shoe said 75% of thise who fail vcs test have mold illness...i think thats what he said. The point is some who passes the test can still have mold illness. There are ten steps to tx beginning with welchol or csm. Each step has specific tx based on specific test result(other test than vcs) there is a facebook group with "shoemaker protocol"in the title where you could get more info. Also his own site survivingmold.com
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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posted
I changed the title of this thread so i can find it easier and it will come up on search for mold
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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posted
AG. I am learning more. I will come to this thread regularly now. I have learned ways to take csm.and welchol. They used to send me to.er. let me know if yoy want more info
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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posted
So...ive been busy and didnt tell you my testing came back. I have two genes that make me unable to detox ... one is for mold, the other for other stuff that includes lyme. I began dealing with lyme infection over 30 yrs ago. Thats when i became aware. The reality is i camped at montalk pt-end of LI when i was 3-7 so probably was exposed early. Had horses in ct from 7-14...probably more exposure. I didnt start looking for answers ti health issues til 30 s and didnt start tx til late 40s...after my initial abx lyme tx of two years, very high dose orals i was on csm for one year. But i continued on and off lyme tx and never did more detox so i am.bound to be full of lyme toxins. I was mcs until i lowered my load so i have those biotoxins inme and then afive yr period of heavy mold exposer. So i have a bunch ofvtoxins to get rid of .
The testing reqires you test neg to a bunch of stuff we all test neg to...when the doc says your fine...its all in your head. If you test pos for those they are txed
Or its explained when you do protocol they will turn neg
Then theres a bunch that are related to mold. I was pos for 4-5 of them.and two havent been done.
After the welchol and csm.i take to get certain numbers down othet meds are used
Sometimes you do one tx and more than that gets better
I am so surprised by how much the test results reflect so many specifuc sx tht i have had for so long that no doc has been able to explain or help. So many specialists...so much travel...so much money spent and the answer is rught here. I understand ritchie shoemaker can.say things that upset ppl...but hes a genius and he cares and he has followed the science to an organized protocol that works.
I totally appreciate the lyme docs i worked with...but thry all said theres a lot we dint know. I ll tell you what i know is true and we can.decide together how to deal with what we dont have answers to yet. Imso greatful.they were brave enough to try...without a roadmap...im sure i would hve been.much worse off.
But we can thank ritchie for the roadmap he has created. The mold cert docs are findingbwhen they treat mold, lyme sx go away.
Im glad i found them...i had already accepted i was on a downhill path and probably would never improve. Now i have a totally different outlook.
Hopefully in a year i will be a different person. Let me know if i can help any of you dealing with mold or wondering if you are. I will try to post links soon.
But start by watching youtube of mercola interviewing shoemaker as an overview.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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droid1226
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Whatever the problem is that's making us sick, we cannot be married to a diagnosis whatever it is even if we are heavily invested.
If you have lyme & have a hard time detoxing(MTHFR), this protocol has to be considered because I believe the premise of it is limiting exposure & getting rid of dirty bile that's being recycled through your blood.
posted
Maybe it would be wise to do the 23andme to find out more about the MTHFR?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
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posted
I could do thst test and did plan on it but now i know i have the gene that doesnt detox lyme toxins. My bodys doing what droid says about the bile. So no need really for another test to tell me same thing. Im treating for it now.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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droid1226
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Whatever the problem is that's making us sick, we cannot be married to a diagnosis whatever it is even if we are heavily invested.
If you have lyme & have a hard time detoxing(MTHFR), this protocol has to be considered because I believe the premise of it is limiting exposure & getting rid of dirty bile that's being recycled through your blood.
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