• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Long time lurker coming out to thank Freddd

skwag

Senior Member
Messages
222
@Freddd

I've noticed you have been taking some heat recently, so I thought it would be a good time to express my thanks for all the great information you have freely given over the years. The same thanks go to Kevin, Red and a number of others that posted on the old Wrong Diagnosis thread.

I don't have any questions, but I'll try to give you a brief history in case an extra data point is useful. I found the Wrong Diagnosis thread after experiencing a couple crashes the previous year. It would take about a week to recover if I rested. To this day the crashes still perplex me. I don't have CFS ( based on my own opinion ), but the symptoms I've experienced are awfully similar. During the crashes, I was simply not able to think. I remember I had to do some simple addition and subtraction so I could cut some boards to a proper length, and i would repeatedly get it wrong. Exhaustion was also there. The worst part was that I would spend most of the day thinking how difficult the next task was going to be. The simplest things just became so overwhelming. I am not exaggerating when I say, I would get one hours work done in 8 hours, and I would fret and make mistakes the whole way through. Another big symptom I have had the last few years is extremely sore muscles after exercise. The onset of soreness was usually 24 hours or more after the exercise but would last for few days. I thought that was normal at the time. Lastly, I was experiencing some numbness mostly in my hands, but some in my feet. The numbness would usually be brought about by cold ( nowhere near freezing, but cold for someone from California ) or positioning, or holding a position to long without moving. I would often wake up with both arms completely numb from the shoulder down.

I have great sympathy for many of the posters on this site. I know the difficulties I had are just a fraction of what many of you have experienced.

I tried to start Freddd's protocol around the time Jarrow went bad. The bad Jarrow along with folic acid instead of Metafolin did nothing for me. When the enzymatic therapy and metafolin finally showed up a few weeks later, I had an amazing reaction. My energy went through the roof, and I lost most of the post exercise fatigue. Work became so much easier. Those great heights did not last more than a week, and I had deal with paradoxical folate deficiency and low potassium. But I got through the worst of it thanks to Freddd's postings. For the past year or so I've felt I was always near the edge of folate deficiency. I have been taking 4 to 5 mg of metafolin a day. Angular cheilitis was never bad, but always seemed to be a touch there or right around the corner. In fact a few months ago at the dentist, the hygienist had to deal with a little blood from the crack which showed up at the corner of my mouth after opening wide. I happy to say after moving to the low dose Nature Made B complex Freddd suggested, there is no sign of angular cheilitis or any other folate deficiency. I can't remember the last time I've had any numbness, and my muscles hardly ever get sore. I'm currently taking the basics and the quartet, and have no intention of stopping.

Freddd, your work is greatly appreciated.
 

skwag

Senior Member
Messages
222
Yep.

It's called Nature Made B-complex ( with Vitamin C ). They also make one with folic acid, which is called Super B-Complex.

Edit: The one with folic acid is called Super B-Complex and not what I had written before.
 
Last edited:

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
@Freddd

I've noticed you have been taking some heat recently, so I thought it would be a good time to express my thanks for all the great information you have freely given over the years. The same thanks go to Kevin, Red and a number of others that posted on the old Wrong Diagnosis thread.

I don't have any questions, but I'll try to give you a brief history in case an extra data point is useful. I found the Wrong Diagnosis thread after experiencing a couple crashes the previous year. It would take about a week to recover if I rested. To this day the crashes still perplex me. I don't have CFS ( based on my own opinion ), but the symptoms I've experienced are awfully similar. During the crashes, I was simply not able to think. I remember I had to do some simple addition and subtraction so I could cut some boards to a proper length, and i would repeatedly get it wrong. Exhaustion was also there. The worst part was that I would spend most of the day thinking how difficult the next task was going to be. The simplest things just became so overwhelming. I am not exaggerating when I say, I would get one hours work done in 8 hours, and I would fret and make mistakes the whole way through. Another big symptom I have had the last few years is extremely sore muscles after exercise. The onset of soreness was usually 24 hours or more after the exercise but would last for few days. I thought that was normal at the time. Lastly, I was experiencing some numbness mostly in my hands, but some in my feet. The numbness would usually be brought about by cold ( nowhere near freezing, but cold for someone from California ) or positioning, or holding a position to long without moving. I would often wake up with both arms completely numb from the shoulder down.

I have great sympathy for many of the posters on this site. I know the difficulties I had are just a fraction of what many of you have experienced.

I tried to start Freddd's protocol around the time Jarrow went bad. The bad Jarrow along with folic acid instead of Metafolin did nothing for me. When the enzymatic therapy and metafolin finally showed up a few weeks later, I had an amazing reaction. My energy went through the roof, and I lost most of the post exercise fatigue. Work became so much easier. Those great heights did not last more than a week, and I had deal with paradoxical folate deficiency and low potassium. But I got through the worst of it thanks to Freddd's postings. For the past year or so I've felt I was always near the edge of folate deficiency. I have been taking 4 to 5 mg of metafolin a day. Angular cheilitis was never bad, but always seemed to be a touch there or right around the corner. In fact a few months ago at the dentist, the hygienist had to deal with a little blood from the crack which showed up at the corner of my mouth after opening wide. I happy to say after moving to the low dose Nature Made B complex Freddd suggested, there is no sign of angular cheilitis or any other folate deficiency. I can't remember the last time I've had any numbness, and my muscles hardly ever get sore. I'm currently taking the basics and the quartet, and have no intention of stopping.

Freddd, your work is greatly appreciated.

Hi Skwag,

Good to hear of your successes. It sounds like you were sitting on the edge for years. I had a series of increasingly worse and more intense crashes for decades until I had the 17 year crash. Due to even folic acid exposure or who knows what, you appear to have been going in and out of one cause of methylation block or another. If you are like me a garden feast can trigger me into paradoxical folate insufficiency in some layers.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
skwag..from your symptoms I do think you could get a CFS diagnoses.. im curious why you think you couldnt have it with those symptoms (mine came and went with on and off crashes for the first year before it came in full time after the crashes happened more and more and got longer.. between crashes, I was completely well). I think quite a few people who fit "CFS" have it due to methylation issues.. which would be a subgroup of CFS.

I agree.. those like Fredd are doing an amazing job helping many who have CFS or even ME. Normal folate was no good for me too.
 

caledonia

Senior Member
Skwag, thanks for posting your story. You sound like me in the last year or so prior to becoming disabled. I believe you have headed off a full blown case of ME/CFS.

If you're doing woodworking, I hope you aren't using toxic finishes. This was one of the things that did me in. I only use hide glue, zero VOC super glue and shellac now.
 

skwag

Senior Member
Messages
222
taniaaust1,

Perhaps you are right. I have just never thought the severity of my situation rose to that level. I never had the chronic part of CFS, but maybe that was what was in store for me without Freddd's protocol. I have always been active and more or less in shape. I go through periods where I exercise strenuously. So, I more likened my situation to "overtraining syndrome" which Rich Vank had suggested shared a lot similarities to ME/CFS. I do wonder if there is a spectrum here, or if all roads lead to full blown CFS.
 

skwag

Senior Member
Messages
222
Skwag, thanks for posting your story. You sound like me in the last year or so prior to becoming disabled. I believe you have headed off a full blown case of ME/CFS.

If you're doing woodworking, I hope you aren't using toxic finishes. This was one of the things that did me in. I only use hide glue, zero VOC super glue and shellac now.

Interesting. For a few years before I had any serious symptoms, I was doing a bunch of different home projects. Cleaners, paints, drywall dust, stains, varnishes.... I probably was exposed to more VOCs and other unknowns than in any other time of my life. For the past year I have been wearing one of the 3m half face respirators for anything remotely dangerous.
 
Last edited:

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
taniaaust1,

Perhaps you are right. I have just never thought the severity of my situation rose to that level. I never had the chronic part of CFS, but maybe that was what was in store for me without Freddd's protocol. I have always been active and more or less in shape. I go through periods where I exercise strenuously. So, I more likened my situation to "overtraining syndrome" which Rich Vank had suggested shared a lot similarities to ME/CFS. I do wonder if there is a spectrum here, or if all roads lead to full blown CFS.

Hi Skwag,

The way I look at it many people are sitting on the fence, biochemically. All it takes to dump them into partial methylation block, is something that stresses the system; viruses, bacteria, toxins that destroy b12 or folate and as a stressor "(double danger), vaccines (sometimes), physical injury, something that puts more than usual stress on the body and depletes something that finally puts them into partial methylation block. It appears to happen to people with many different genetic characteristics, but an awful lot of us can't utilize folic acid well and some of us, have the same effect with plant folates. For a lot of us the key factor appears to be folic acid that blocks the methylfolate which decreases the serum half life of b12 that causes the equilibrium to be lower than it would have been and that can then trigger methytrap, which hits like a ton of bricks. Sudden onset CFS appears to be sudden onset of methyltrap which has flu like qualities all by itself and then that deadlocks ATP production that drops another ton of bricks on you. Now anything that causes a problem with any of the deadlock quartet can have the same eventual effects except onset is in a different order. For instance, a major subset here for whatever reason have to have LCF instead of ALCAR but 10% have to have ALCAR instead of LCF. These people can be deficient in carnitine and that can cause the same mito problems as AdoCbl deficiency, which it ends up causing. It causes the crash from the opposite direction but it happens none the less.
 
Last edited:

caledonia

Senior Member
Right, like Freddd is saying, there can be any number of things which will be a stressor to your body. Mercury (from dental amalgams) and lead are other biggies. People with methylation mutations have less ability to deal with these than others. I explain that in my videos too.

If I think back, I can see many things that contributed over the years. I even had a bout of ME/CFS after wisdom teeth removal surgery and recovered from that. It was the anesthesia that did me in. Of course, I had no idea why I felt so bad at the time. I remember sitting at my desk at work wondering how I was going to walk across the atrium to the bathroom. It lasted about a month. This was about five years before becoming disabled.
 

cph13

Senior Member
Messages
221
Location
USA
@Ema, et al HERE on PR"

NM-B complex with vit C (w/o folic) list # is 1338
http://www.naturemade.com/products/b-complex/b-complex-with-c.

NATURES MADE has a wellness rewards program. Stock up on 500 points and get ...a $7.00 cpn...... is wonderful.... check it out @http://www.naturemade.com/register

@skwag ...SSSSSSSSSo happy, to hear of your success. I think it is AB - SO - F'in- LUTELY great of you to come here and acknowledge FREDDD.
For all of his postings on his SUCCESSES, TRIALS AND ERRORS that he has/have and will (ihope) share with us. I Thank him too. He has done SO MUCH for many in the community of me/cfs/fibro (sickos), at times, w/o acknowledgement.

Here, Here Freddd and skwag.

There are so many participants on PR that have helped me not just with methyl but with so of my many questions on EBV and HHV6. etc, etc, etc,.

Someday, I would hope to get to where U R @skwag. I will share my success story too!

I had a taste of honey...........than PLOP...PLOP...FIZZ....FIZZ and that's just what I did...did :-{ .
I am re-grouping for the 2nd time or 3rd (who's counting?????) with the help and suggestions of Caledonia's back in June I WILL succeed as will Caledonia,.

@caledonia, you my friend, are entitled to my acknowledgement as well, I will update you soon.

MY BRAIN FOG IS HORRIFIC, please, please excuse my neglectfullness (is that a word :-{ ??? ). Can it be more than just fog...I won't say the word. I will just keep on going on.

Realty is!

In the world of "trying to heal" 6 months is a long time; yet, while trialling slowly, as suggested...it is such a slow, long, frustrating process.

I wish Skwags' successes to each and every one of us.

PS-I would be remiss in not mentioning the help I've rec'd/read from
EVERY MEMBER OF THIS WONDERFUL COMMUNITY.
may we all HEAL n DEAL with this "situation" today, tomorrow and forever.

Wishing everyone a snow white December (even if only in our minds) A GRAND NEW year, and a life filled with the JOYS we all deserve.

SMILE my friends...U R not alone

as this journey is:

one small step for a man, one giant leap for mankind .........PERHAPS

With oooooooo and xxxxxxx, I am always your friend
C
 

skwag

Senior Member
Messages
222
@cph13 @caledonia

I wish you and everyone else on this site the best. I've read much of the content here and I have an idea of how difficult healing can be. During my healing I had some minor nerve pain. I would get short lived stabbing pain in my foot simultaneously with a stabbing pain in my torso on the same side. It would occur many times a day, but be brief enough that it was tolerable. This went on for 6 months or more. With that said, I can imagine it being much worse. I don't really think I'm in a position to give advice, and I don't think I'm saying anything you don't already know, but I do want to encourage people to give Freddd's protocol an honest shot, and unfortunately that may mean dealing with the pain of healing and all the other complications that arise. It may be that the protocol won't work for everyone, but it appears to me to be the best roadmap we have. Good luck to both of you.

I was checking Amazon the other day for the anobol AdB12, and i saw under the "Customers frequently by this together with" section that they had the Doctor's Best LCF listed. This tells me that Freddd's protocol is known by a great many people. I might guess there are thousands like me who have quietly taken Freddd's advice without posting here. In this "game of you bet your life," as Freddd would put it, I think Freddd has dealt a great many people that much needed ace on the river.
 
Last edited:

stridor

Senior Member
Messages
873
Location
Powassan, Ontario
@skwag
Yeah, keep and eye on Tung Oil which can lower glutathione (I suspect in the liver).
Your story brought back a memory. I was making a walnut serving tray and to my dismay I discovered that I had made two right side handles. There was nothing for it but to make a left handle from scratch.

I did so only to find that I had once again produced a right handle. So this time I spent an awful lot of time getting it right and I did..... I made a beautiful left handle and so threw the extra right sided handle into the stove....yep, it was the left handle that was consumed in flame. I did get my left handle in the end, and a big serving of humble pie. So yeah, I know what it is like to be fogged in the workshop.
Incidentally, I have just returned to my tools after not being able to stand since 2010. I am good for about 4 hours and don't push things. Brain-fog and tablesaws are a bad combination. brad
 
Messages
37
Location
Missouri
I'm not a long time lurker, just half a year, but the info @Freddd posted has saved my (age 15) son's life literally. And I'm finally putting the pieces together of both of our lives. I haven't actually posted my introduction yet because it's such a complicated story, but I hope to soon. I just thought I should chime in here because freddd's posts brought me to this site and I'm so grateful to have found it!

What's amazing to me is that my son and I were both using parts of the protocol that we had found through various suggested autism treatments over the last twelve years. I didn't know exactly why they worked but could tell they helped. When I started reading @Freddd, I realized we'd somehow managed to find all the cofactors, but not the most important part: active folate and active b12s! Reading his posts and the links he provides has given me reasons for formerly inexplicable mysteries and given my son a chance at life. I still haven't comprehended everything, but as I myself move further out of brainfog, I've gone back and tried to understand what he says more thoroughly. Thank you so much for your work!
 

mellster

Marco
Messages
805
Location
San Francisco
While I didn't strictly follow Fredds protocol, B complex + B12 (during my worst read below 300 pg/ml and having lost 40 lbs with poor nutrient absorption, now around 600 pg/ml) was in fact the first building block to fix my gut issues and pave the way for MAF314 and other supplements to work their magic. Because I read PR back then I decided to avoid folic acid and use metafolin instead, although not following specific protocols. Freddd's and Rich's work around methylation, even when they disagreed, are highly valuable.
 
Messages
48
is there any issue with the nature made b6 not being the p-5-p active form? i have read that some people may not convert well.

sorry for crappy typing - soaking a burned hand right now.
 

skwag

Senior Member
Messages
222
I moved from a b-complex with p5p to the Nature Made a few weeks ago. I haven't noticed any negative effects. In fact, the lingering borderline folate deficiency I was experiencing disappeared. The likely reason seems to be the significantly lower dose of B1 in the Nature Made.

I've also read that some people don't convert well, but I guess I'm not one of them.