What constitutes healing of ME/CFS/FMS?

[Freddd]

I agree that semantics are extremely important. It's really important to not create unrealistic expectations. But IMO it's even more important to keep hope alive, or maybe create hope of new possibilities where before hope did not exist.. Striking a balance between the two is frequently very hard.

For example, saying "CFS/ME/FMS can be cured using XXX protocol" is NOT the same thing as saying "You will cure your CFS/ME/FMS if you use XXX protocol". I think even sick people are capable of understanding the difference between "can" and "will".

At any rate, "can"-type language is used in medicine all the time. My mother was told that she could (can) cure her breast cancer using lumpectomy and radiation. She was not told radiation/lumpectomy would (will) cure her breast cancer, but that her cancer was something that can be cured if the right combination of therapies was used. She was also told that some tweaking of the regimen might have to occur, based on the results of her initial therapies.

My father was told the same thing when he was diagnosed with lung cancer, although his prognosis was much poorer. But was told his cancer could be cured if everything fell into place correctly. Far from creating unrealistic expectations, this language gave him hope even in the face of almost the worst diagnosis anyone can get.

I see our work with methylation as much the same type of thing as is practiced in cancer medicine. It's personalized, and a variety of therapies may be used depending on the person and the person's condition.

From my perspective, one of the biggest roadblocks we face here in being on the cutting edge of type of "personalized health" is that we don't have much authority to appeal to. Doctors are frequently wrong about many things, but just having them as authority to appeal to is comforting to many people. Not having that authority (like when being treated for cancer by an oncologist) can be a big psychological barrier to progress when the path to wellness is not a straight upward trajectory. Which it's not around here.

The other biggest roadblock I see is that most people inexperienced in alternative health starting doing something like methylation supps, and they expect taking a few supplements to be like taking antibiotics for infection: one smooth course of pills for a projected amount of time and then everything is done. All better! But health in general and alternative health in particular usually doesn't work like that. There is a fundamental misunderstanding of how the course of healing usually proceeds (it's frequently worse than the course to chronic illness). IMHO it's not language that creates unrealistic expectations so much as the lack of experience and/or lack of understanding.

Speaking for myself, I've had what I consider to be a long, hard battle with my health. Maybe not as hard as some people have had, but it's been bad enough. I've suffered at times from fatigue so severe I could barely drag myself out of bed to use the bathroom. I've suffered from chronic anemia for years and to this day lose over a pint of blood in 24 hours every single month due to female problems. That's always a lot of fun and creates a special type of irritable exhaustion. I've had brain fog so bad i couldn't think. For years I had monthly cramps so bad I would scream and vomit. At times I've lost hope in ever being well, to the point where I've been so suicidal I've actually had a gun in my mouth (more than once). A timely kiss on the leg by one of my dogs saved me from that once. A sudden glimmer of hope filtering into my mind from out of nowhere saved me another time.

Which is my larger point here: hearing that their problems can be cured gives people hope. IMHO hope is more important than anything else in this process. It can get smashed by unrealistic expectations but still come back if the right language is used to promote it.

Imparting understanding that the course of recovering health is not smooth is the second most important thing in this process.

When I hit this board I had given up hope that my energy problems would ever be cured. What I actually came here for was to maybe find a way to help me regrow some hair that I've lost. But energy and cognitive function? Meh. Pretty much given up on that. I had resigned myself to much reduced functioning for whatever years I have left. Also had resigned myself to the chronic galloping munchies, driving me to eat more than I needed and never being able to lose any weight.

But instead of hair, what I found here was @Freddd, imparting HOPE that with a lot of patience, hard work, and a willingness to experiment, I might actually *cure* my most pressing problems. I could lose weight! I could regain some energy! His experience was a total inspiration to me. Then as I read more and saw some other people here were having the same results, hope grew. I had my own encouraging results starting out, and hope is now stronger than ever.

It hasn't been easy or a straight upward trajectory for me. I got really sick when I first started the protocol...I was out of work for a week. I've had quite a variety of symptoms, from insomnia to extreme sleepiness, from being very calm to being hyper and hyper-irritable, and my energy still fluctuates up and down, sometimes to a disheartening degree. I still get brainfog...just recovering from a week where I haven't been able to concentrate on anything that requires more than stream of consciousness (like posting here ).

But I now have hope that, with my understanding of how the course of healing goes, I can one day lick these problems. I may never actually do it. I may never achieve my goal of feeling like I'm 25 again. My expectations may be unrealistic. But does that mean I shouldn't try? Does that mean I shouldn't hope for better than I've got now, even though what I've got now is much better than what I had four months ago?

I don't think it does.

So while I believe we should all strive not to create unrealistic expectations, I also believe it's even more important not to squelch discussion of the possibilities. What CAN happen with these supplements, if we persist and don't quit.

Freddd is a good example of what CAN happen. Not necessarily what WILL happen in every case, but what CAN. Personally, that gives me hope.

Just my $0.02.

Hope and hopelessness. It sounds like the title of a Jane Austin novel. I had enough symptoms blossoming by 1978 to concern me. I spent days at the libraries, reading journals and everything else the Reader's Guide could point me at. In 1979 I started a desiccated liver trial. It worked enough to know it worked but it lacked oomph. I hate liver and liver burps. I didn't adopt my grandfather's cook's method of making liver extract. It was better than raw liver puree. I duplicated the results of studies in the 1930's and 1940's. Then I made the rounds to doctors. Despite having copies of all these studies showing that Cyanocobalamin was not B12 except by official definition, 100% of doctors of all varieties said that getting the "real" B12s, AdoCbl and MeCbl is a nonsense idea and would make no difference. I went to approximately 10 docs per year trying to get a useful diagnosis and treatment. 100 doctors later and lot's of drugs and various treatments, and I was far worse and most of the treatments made me sicker. Every one of them told me I was completely wrong. The "mercury" docs were all sure they had the solution. There were all sorts of docs with all sorts of ideas and treatments. I kept track of every treatment and drug and side effect. Eventually I interviewed the docs and found out what hypothetical basis they were working form and then showed them all the treatments they could suggest had already failed. One even asked me why I didn't have even any placebo effect. I answered "because I keep track of everything by the day in detail". A lot of perceived placebo effect comes from normal variations being attributed to whatever was last done.

Each doc was sure they would nail it. They were all sure they understood and could treat it leading to a cure because from those confounding tests I didn't seem very sick. Some called me a liar to not admitting to being an alcoholic. I even went with the "toxins etc. in meat" hypothesis and did the vegetarian thing for 20 years. It almost killed me. Each time a different theory failed totally more hope went down the drain. I haven't heard of any new hypotheses in a long time, just recycled and re-reasoned hypotheses based on whatever the virus of the week, or some set of genes founds or whatever recent discoveries. I had a lot of near death experiences and they were almost always of the "You still have work to do". I wanted to die. I wanted to escape the unending misery. Getting sent back to serve out the life sentence over and over again was hell.

I got kicked out of practices for "having too many symptoms to be believable", for lying about really being an alcoholic (at that point I couldn't tolerate alcohol), for insisting that there was a "real B12" that might work on my symptoms, that I wouldn't accept "It's All In You Head" as the correct diagnosis, for looking up side effects and contraindications and so on in the PDR and refusing various drugs on that basis or that they had already failed for me with awful side effects.

Hope is what keeps people making efforts. When it is hopeless, why make effort in that direction. I've never gone to a doc who wasn't hopeful that their knowledge and theories could provide a working treatment and maybe a cure. After all I didn't have any "dread disease" or recognized incurable disease, so it was curable. In the mid 90s everything changed, the internet put lots of information at my fingertips. Starting in 2001 or so, when I was focused on finding any subset of my symptoms, like neuropathies, I started seeing people claiming being healed of neuropathies. There was only one thing mentioned in that connection, methyl B12, but only about 5% of the time. For the first time in a decade I had some hope again. At that time almost nobody mentioned the brand figuring MeCbl was MeCbl. 5% isn't much, unless there is a reason it is only 5% that can be corrected. It turned out to be all engineering from there. I had hope and got busy chasing down why it only worked 5% of the time. How much hope does it take to motivate a person to set out on a journey of 100,000 steps taking more than 5 years? If all a person is going to get out of it is a different variety of suffering what is the point? At that point the "hope" of alleviating 1 or 2 or 3 symptoms and leaving the other 200 untouched is kind of a bad joke.

Institutional blindness was something I had to learn to look into in my line of business. Docs don't do insurance fraud unless they think they can hide it in a blind spot. CFS/FMS/ME exists in the middle of a huge institutional blind spot. That happens to be the kind of problem I spent decades solving. As I state over and over, it is complicated, very touchy and no guarantees of any kind and it is a "game of skill". One has to be able to self observe and interpret accurately to have a chance. KNOW THY SELF. Nobody can do it for you. And it is a rough trail.

 

[Adster]

@whodathunkit @Freddd

Agree 100% that hope is vital - that's a good point. No doubt it's kept many of us alive.

Personally I think realistic hope should be the goal. Unrealistic hope however, in my opinion, can blind us to other possibilities and clues - especially given the poor standard of diagnosis we are usually dealing with, of a yet to be understood illness, and can set a person up for a dangerous emotional crash when those hopes aren't realised.

 

[whodathunkit]

@Adster: Yes, I agree with you, too. Qualified. But like @Freddd, I don't believe we necessarily need a diagnosis to heal. We don't need to understand what is wrong with us nearly as much as we need to understand what should be right, as well as an understanding of how the journey into right can proceed. It's my firm belief that emotional crashes can be avoided with the correct understanding and preparation. Or at least, they can be mitigated into transient disappointments instead of traumatic events that derail us completely.

Worth noting is that diagnoses can blind us to things, too. For example, my father was diagnosed with a blocked artery and got a stent as a treatment for his chronic breathlessness. They said the breathlessness stemmed from poor circulation. But what was really wrong with him was lung cancer that couldn't be seen with a CAT scan because it was on the back of his lung next to his spine. They were so satisfied with the stent diagnosis that they didn't look for any further causes of his pulmonary problems. By the time he had the PET scan that caught the lung cancer (2 years later) he was Stage IV. My father might be alive today if it weren't for that one blinding diagnosis.

I've never had a diagnosis beyond your garden-variety adrenal exhaustion and chronic severe anemia, and in fact before starting Freddd's protocol I was what my doctor termed a "non-responder". My doc is a great MD who prescribes natural and practices alternative, but I always had had marginal success with anything she put me on. I made some progress, but never anything earth-shattering,and nothing like she expected or wanted me to make. The things that had done me the most good were things I tried on my own (like salt loading and iodine therapy). She was was actually kind of discouraged with me, because although I was really enthusiastic and would try whatever she wanted me to try, I never responded really well to the things she prescribed me according to her diagnostic tests. And we could never pinpoint anything really wrong beyond really low cortisol, scary low ferritin, and some other abberrant values here and there that didn't add up to anything. And even when I took iron for the ferritin, I couldn't hang onto it. I had an iron transfusion and less than three months later my ferritin was lower than it ever had been. Adrenal supps didn't do me as much good as she expected. Etc. Everyone was really puzzled.

But along comes Freddd's protocol, and now I'm finally fixing msyelf. Ferritin is coming up even though I'm not taking iron any more, and adrenals are doing much better even though I'm not taking glandulars any more. Etc.

Just saying that to illustrate my contention is that instead of insisting on diagnoses that can't be accurately made in the first place, most people would be better served with a more wide-spread understanding of what health is, and of the healing process beyond what it takes to knit a wound together after surgery. Our culture is sorely lacking in that essential knowledge.

But also, as Freddd said, we need knowledge of ourselves. Self-knowledge begets self-trust, and that is another essential of the healing process.

Understanding of the what should be right with us (i.e. what health is) helps us set the goal. A goal can even be an optimal lab value for some health marker (like blood sugar) if you're really into diagnostics but have never received an accurate diagnosis of your condition.

Understanding of the healing process helps us set realistic expectations for how we can reach the goal, and also prepares us for what might happen along the way (especially, in the case of methylation protocol, the side effects and how bad they can get). Advance knowlege (prep) is crucial to avoiding emotional crashes. It's the unexpected that usually gobsmacks us, not the things we prepare for.

Understanding of ourselves gives us the determination and courage to stay the course, and the trust in our own judgment to alter it appropriately when necessary. "Altering it appropriately" includes slowing down, speeding up, stopping for a while, or re-starting. Any or all of those strategies.

Of course I think accurate diagnoses are useful and every attempt should be made to arrive at one if it's possible. But so much of what I've seen on this board is people who can't get any kind of a diagnosis. Lack of a diagnosis shouldn't hold us back from trying anything. And even if we do have a diagnosis, it shouldn't be a limiting factor in our exploration for therapies that could help us.

I dunno, in so many respects it's all very metaphysical. But I've been around natural health for three decades now, and there are definite trends and patterns that you notice if you pay attention. These are what I've noticed over the years. It's all crystallized since I got to PR and made the progress I have, but it's been right in front of me the whole time.

Hope that makes a little sense.

 

[Freddd]

@whodathunkit @Freddd

Agree 100% that hope is vital - that's a good point. No doubt it's kept many of us alive.

Personally I think realistic hope should be the goal. Unrealistic hope however, in my opinion, can blind us to other possibilities and clues - especially given the poor standard of diagnosis we are usually dealing with, of a yet to be understood illness, and can set a person up for a dangerous emotional crash when those hopes aren't realised.

So one person out of who knows how many says that healing is possible because of having done it and apparently that one person gives people unrealistic hopes that will set them up for a dangerous emotional crash? I would rather think that nobody at all saying and demonstrating that this disease is possibly healable is more likely to set lots of people up for dangerous emotional crashes. That would be just plain depressing, suicidally depressing. I meet people here that have arrived at that point. So one person saying it can be healed and demonstrating it, is what?

At first it was "as soon as I recover". After 3-6 months it was "when" I recover. At a year or two it was "If" I recover". At 5 years it looked like the only relief was going to be "or something", death. My wife got horribly depressed as for her it had changed to "when he improves, or something". She had 3 young children and a disabled husband. Life looked bleak indeed. The thought of "no cure "was devastating to her, and to me. It damaged the lives of my children. At 18 years it was "You say you are feeling a lot better but you can't do any more." It took 7 more years and more healing and for rehabilitation. Healing, recovery and rehabilitation (and enlightenment for that matter) are processes. Earl Nightingale defines "success" as "the progressive realization of a worthy ideal". One has to solve this disease. It happens in layers.

My doctor called what he saw in front of him for some years, "naked eye healing". It wasn't hidden. It didn't need ;labs to tell people that healing was happening. Everybody else could see it too. I hope you too can figure out from all the various hints, how to find your way though the maze and have naked eye healing. The foundation of these diseases is reasonably predictable. After nutrient absorption and immune systems get trashed it can develop in all sorts of ways. That is why one must find their way through the individual maze.

 

[Adster]

So one person out of who knows how many says that healing is possible because of having done it and apparently that one person gives people unrealistic hopes that will set them up for a dangerous emotional crash?...........

That's not what I said at all. It's very difficult to discuss it if you keep changing my discussion points in your replies.

 

[SeaShell]

I agree that semantics are extremely important. It's really important to not create unrealistic expectations. But IMO it's even more important to keep hope alive, or maybe create hope of new possibilities where before hope did not exist.. Striking a balance between the two is frequently very hard.

So while I believe we should all strive not to create unrealistic expectations, I also believe it's even more important not to squelch discussion of the possibilities. What CAN happen with these supplements, if we persist and don't quit.

Freddd is a good example of what CAN happen. Not necessarily what WILL happen in every case, but what CAN. Personally, that gives me hope.

Like whodathunkit, I agree that it is hope that is important. To hope that I can get better. I don't have the answers to my set of issues but I keep researching and looking for the possibilities.

A few months ago, I started on Freddd's methylation protocol and find that not everything there is suitable for me right now. I started with the Deadlock Quartet which was ok for a couple of months but now mainly need the methylfolate not the MB12. So I am tweaking the protocol to fit what my body needs. I am not going to dismiss what I have learned from Freddd's protocol, I am using it as a stepping stone to help my body, and I am learning as I go. It may not be the answer for me, it may be one more of the other treatments that didn't work, but I'll never know unless I try.

I am following all the rules of good health that I possibly can: diet, water, organic foods, vitamins and so on. As long as there is hope that I may get better, I'll keep trying. If I have to take several supplements each day to improve the current quality of my life, I'll take them as long as I can afford to take them.

Call it "remission", "recovery", "cure", "partial success" ..... I'll take what I can get, if it means a life better than what I have now.

 

[Adster]

.....
Call it "remission", "recovery", "cure", "partial success" ..... I'll take what I can get, if it means a life better than what I have now.

I don't think it matters so much how we as patients label a treatment's efficacy for ourselves, but I think it's very very important that anyone practicing medicine(as Freddd appears to be, to the benefit of many, including myself!) is very careful with their words.

 

[MeSci]

Like whodathunkit, I agree that it is hope that is important. To hope that I can get better. I don't have the answers to my set of issues but I keep researching and looking for the possibilities.

A few months ago, I started on Freddd's methylation protocol and find that not everything there is suitable for me right now. I started with the Deadlock Quartet which was ok for a couple of months but now mainly need the methylfolate not the MB12. So I am tweaking the protocol to fit what my body needs. I am not going to dismiss what I have learned from Freddd's protocol, I am using it as a stepping stone to help my body, and I am learning as I go. It may not be the answer for me, it may be one more of the other treatments that didn't work, but I'll never know unless I try.

I am following all the rules of good health that I possibly can: diet, water, organic foods, vitamins and so on. As long as there is hope that I may get better, I'll keep trying. If I have to take several supplements each day to improve the current quality of my life, I'll take them as long as I can afford to take them.

Call it "remission", "recovery", "cure", "partial success" ..... I'll take what I can get, if it means a life better than what I have now.

I hope that you and all sufferers (including me!) get what you/we want.

A major obstacle to treating oneself - at least in the UK - is getting the tests needed to know what action to take. We are forever being encouraged by politicians of all hues to look after our own health and take responsibility for it, yet are not given all the tools we need to do it, and are experimenting blind. I couldn't even get a bone density scan because I wasn't prepared to take bisphosphonates!

I get the impression that it is easier to get tests you want in the US, e.g. when you say "I started with the Deadlock Quartet which was ok for a couple of months but now mainly need the methylfolate not the MB12."

Did you have tests to identify this need? If not, how did you figure it out?

I spend a lot of time researching and trying to work out (= guess) what I may need and not need, but am still largely floundering in the dark, although I have definitely achieved significant improvements. Some things I've tried are helping, others have not helped and I have stopped them, but as you say, needs change. It's very frustrating.

 

[MeSci]

Each doc was sure they would nail it. They were all sure they understood and could treat it leading to a cure because from those confounding tests I didn't seem very sick. Some called me a liar to not admitting to being an alcoholic.

May I ask what made them suspect alcoholism? The reason I ask is that Primary Biliary Cirrhosis (PBC) can have similar symptoms to ME and has been widely discussed on PR for that reason.

There are numerous threads but these two have Primary Biliary Cirrhosis in the title:

http://forums.phoenixrising.me/inde...y-biliary-cirrhosis-a-patients-journey.22589/

http://forums.phoenixrising.me/inde...-cytokines-fatigue-and-quality-of-life.23330/

 

[Freddd]

May I ask what made them suspect alcoholism? The reason I ask is that Primary Biliary Cirrhosis (PBC) can have similar symptoms to ME and has been widely discussed on PR for that reason.

There are numerous threads but these two have Primary Biliary Cirrhosis in the title:

http://forums.phoenixrising.me/inde...y-biliary-cirrhosis-a-patients-journey.22589/

http://forums.phoenixrising.me/inde...-cytokines-fatigue-and-quality-of-life.23330/

Interesting. Thank you.

I really have no idea. In the early 90s I had elevated liver enzymes, and quit APAP al together and they returned to normal in a couple of years. I never did receive a diagnosis But later, it had to be changes made by low folate and MeCbl. MCV, MCH, multisegmented neutrophils are affected, low platelet count and some others. I was also asked a lot if I was slow to clot. I wasn't. I looked "bad". My skin was a mess, I looked anemic. The out of the gate first look was always B12 deficiency. They got that right until they took tests and history (taking CyCbl, can't be deficient). My internist said "Your the sickest person with normal tests I've ever seen". Then they assured me there was no b12 deficiency there. Just hundreds of symptoms that come from b12 deficiency. The changes MeCbl made right out of the box were highly visible. So I'm sure I just plain looked sick at least to the doctors and staffs who see sick people all the time. Now when I go into my internists office I don't fit in with the other patients in the waiting room. I don't look sick. However, to family and strangers, I didn't look sick even at the worst. I had an invisible illness. Many of us have experienced that. My ex wife of 33 years didn't recognize me after 9 months of not seeing me in the second year. I don't think it was the first professional haircut I had in years. My wife had cut my hair for 30 years doing just fine. However, with losing more hair around the edges, I changed how I was combing it. I had bought a new shirt she didn't recognize and lost 45 pounds but she had seen me at every weight from 170 to 325, and I was then at my typical weight, 240.

While doing the N-1000 questionnaire development study, I realized that I too could see the b12 deficiency when a person was sitting in front of me. Even then I had a tough time putting my finger on just what tipped it into that. Others who have also interacted with a number of people with these deficiencies also have commented on how easy it is to see.

I go back and talk to people from the 90s most had no idea that I had been sick. So I'm not sure just what some people were seeing and others not. Liver problems can affect skin pigmentation. B12 deficiency can affect skin pigmentation and color, giving an almost dark yellow tint to some areas.

 

[MeSci]

Interesting. Thank you.

I really have no idea. In the early 90s I had elevated liver enzymes, and quit APAP al together and they returned to normal in a couple of years. I never did receive a diagnosis But later, it had to be changes made by low folate and MeCbl. MCV, MCH, multisegmented neutrophils are affected, low platelet count and some others.

Sorry - what's APAP?

My liver enzymes have always tested OK, even when I have felt that I had problems with my liver. I drank heavily on and off from the 1970s to about 1996, when I stopped for a year and then restarted more moderately, sometimes getting excessive for a while but then reducing again. Never been addicted to alcohol (other things, yes, but not alcohol!).

 

[Freddd]

That's not what I said at all. It's very difficult to discuss it if you keep changing my discussion points in your replies.

Please understand I am confirming what I "hear" (interpret? understand?). Communication takes two. The other person in the transaction rarely hears what the speaker thinks is being communicated. I find myself wincing time after time when I hear the mishmash people are making out of what I said and intended to mean, perhaps much as you are here. This part of the discussion appears to stem from your interpretation of what I say as being much less conditional than what I am intending.

Some of the things some people seem to be most put out over is when I try to use unambiguous language. Another thing is when I fit what they are saying into a structure defined by partial methylation block, methytrap and partial ATP block, to put it into a similar langue rather than "mitochondrial dysfunction" which is more ambiguous.

As far as pumping up unrealistic hope in people, I don't do that to the best of my ability. I was devastated over and over when each "this is THE theory and treatment" failed". When one doctor can't diagnose or treat something, there are many others. I tried everything I could find. When 100 docs of many varieties and hypotheses all fail totally, have the answer at first glance and then throw it out because of tests, it demonstrates that the tests are wrong. Logic based on the corrupted tests doesn't work. Hence, an institutional failure to be able to see and understand this disease is in place as we have all experienced.

As many have commented on, it is impossible to speak of these things with most doctors as they are stuck in a box of understanding based on false assumptions and corrupted data.

As far as diagnoses go, out of the universe of say, 300 or symptoms and signs that come out of the Deadlock Quartet deficiencies, that in itself is a part of the puzzle. So the gastroenterologist picks up on one handful of symptoms, the cardiologist picks up on a different set, the neurologist picks up on several sets, the psychiatrist takes on another several sets of symptoms, the ENT, internist, and on and on. There are more than 100 specific diagnoses hidden in that universe of symptoms, all of them descriptive of a that part of things but none of them actually useful or accurate.

Tell me how useful a diagnosis of "idiopathic neuropathy" is. It may be an accurate description of what is happening with the nerves yet it misses the mark totally. I have had all sorts of diagnoses of that sort, accurately describing an isolated subset of symptoms and totally missing the boat. Not a one asks is there one primary root to all these many apparently separate diseases that affect every part of the body?

How many doctors that you have gone to have actually sat and listened, or read, your complete set of symptoms and onset patterns over a lifetime? Any at all? The closest I have come was after I walked into my internist's office with naked eye healing going on 3 weeks after my first visit. He wanted to know how I did that. His opinion now is "too complicated for most people to do". Compliance falls off after 3 items to be taken a day.

I'm trying to convince the insurance companies to pay for MeCbl injections daily in relatively large and frequent doses on the basis it will be cheaper than the vast collection of medication prescriptions many of us accumulate and it will keep some of us out of a wheelchair which saves lots of money. Many won't even cover Deplin.

So I have to agree that most diagnoses we get really are not that relevant to healing. CFS/FMS has been accused of being a garbage heap diagnosis. When we have some functional diagnoses, like "partial methylation block" or "methyltrap" attendant to MeCbl and/or L-Methylfolate deficiencies or insufficiencies, then the diagnoses carry the idea of treatment with them. Rich VK was a breath of fresh air, touching upon an actual malfunction rather than the results of the malfunction.

 

[Freddd]

Sorry - what's APAP?

My liver enzymes have always tested OK, even when I have felt that I had problems with my liver. I drank heavily on and off from the 1970s to about 1996, when I stopped for a year and then restarted more moderately, sometimes getting excessive for a while but then reducing again. Never been addicted to alcohol (other things, yes, but not alcohol!).

http://en.wikipedia.org/wiki/Paracetamol
Paracetamol (/ˌpærəˈsiːtəmɒl/ or /ˌpærəˈsɛtəmɒl/), also known as acetaminophen i/əˌsiːtəˈmɪnəfɨn/, or APAP, chemically named N-acetyl-p-aminophenol, is a widely used over-the-counter analgesic (pain reliever) and antipyretic (fever reducer).[7][8] Acetaminophen is the name adopted for this pharmacologic agent in the U.S. (USAN) and Japan; paracetamol is approved in a variety of international venues (INN, AAN, BAN, etc.).[9][10][11] Common trade names in English-speaking markets are Tylenol and Panadol.

 

[ljimbo423]

Hello everyone- This is my first post here, but I feel compelled to share my story as it very much pertains to methylation.I have been disabled with CFS/FM for 25 years. I have tried many of the leading protocols for just over 7 years now. I treated candida, leaky gut, adrenal fatigue, mitochondrial dysfunction, and small intestine bacterial overgrowth (SIBO) with almost no increase in health.

Just over a year ago I started treating under-methylation. It was very slow going because I had really bad detox symptoms from methylfolate. After about 10 months I was able to increase the methylfolate much faster. In about a month and a half I went from 1,600mcg a day to 6,400mcg a day. The second day at 6,400mcg of methylfolate my energy level literally tripled. Some of you are familiar with Rich Van Konynenburg's theory of a partial methylation block. I believe that I broke through that "block" at 6,400mcg methylfolate.

I was functioning at about 10-15% and literally overnight I was functioning at 35-40%. I was struggling to walk 10 minutes once or twice a week and overnight I was walking 20 minutes every other day. I believe what happened was my methylation cycle became unblocked and "turned back on", that is what explains the increase in energy.

That was the middle of may this year and I continue to heal and become more active. I know it was the methylation treatment that made the change because it's the only thing I did different and if I cut back on the methylfolate or other methyl donors that I take, I get sick again very quickly.

If I continue to heal the way I have been in the last two and a half months, and I believe I will, than I will recover my health. I have read and researched methylation extensively in the last year and a half. Based on that research,and my personal experience in healing from methylation treatment, I believe that under-methyltion causes immune system dysfunction, leaky gut, mitochondrial dysfunction, dysbiosis and many other problems.

Of coarse each of us has to decide what is true for them. I remember when I first started reading about methylation and how it sounded so far fetched to me. A year and a half later and many, many hours of research later (about 1,500-2,000 hours), it makes MUCH more sense, especially with how my health has improved because of it. Anyway I'm not here to force what I believe on anyone, but I believe it is important for anyone that makes progress with CFS/FM to share their experience. Best of luck to all! Jim

 

[MeSci]

Thanks for your story, @ljimbo423. Hope you continue to improve. I'm not very well up on the methylation theory and treatment and don't have time to plough through it, but I seem to recall someone/people saying that it depended to some degree on one's genetic make-up, e.g. MTHFR SNPs - is that right?

 

[ljimbo423]

Thanks for your story, @ljimbo423. Hope you continue to improve. I'm not very well up on the methylation theory and treatment and don't have time to plough through it, but I seem to recall someone/people saying that it depended to some degree on one's genetic make-up, e.g. MTHFR SNPs - is that right?

Hi MeSci- Thank you. Yes, I believe that the MTHFR SNP's are at the core of what causes a methylation block or under-methylation, but there are often other SNP's involved.

 

[Sushi]

Hi MeSci- Thank you. Yes, I believe that the MTHFR SNP's are at the core of what causes a methylation block or under-methylation, but there are often other SNP's involved.

I am an example that doesn't fit! I don't have either of the common MTHFR SNPs but had a severe methylation block as measured by the Health Diagnostics Methylation panel.

Sushi

 

[ljimbo423]

I am an example that doesn't fit! I don't have either of the common MTHFR SNPs but had a severe methylation block as measured by the Health Diagnostics Methylation panel.

Sushi

Hi Sushi- It's my understanding that there is the 2 most common MTHFR polymorphisms, the 1298 and 677, but there are also other MTHFR polymorphisms. There are also other SNP's in the folate and methylation cycle that can cause under-methylation.

 

[Adster]

@Freddd I apologise if I have not heard you properly - that's frustrating.

I'll try to be as succinct as possible with my request, and then leave you be ;-) No need to respond again:

As a sufferer to a practitioner, please don't say you have "the" or "a" cure for CFS/ME/FMS. Not yet, anyway.

 

[MeSci]

Hi Sushi- It's my understanding that there is the 2 most common MTHFR polymorphisms, the 1298 and 677, but there are also other MTHFR polymorphisms. There are also other SNP's in the folate and methylation cycle that can cause under-methylation.

Have you all seen this poll/thread?

Important NB before you do the poll - 'compound' means on the same strand, according to @Valentijn. Sorry if all you gene genies know this - I didn't but then I'm a beginner with the SNP/methylation stuff!

EDIT: got it wrong - sorry, @Valentijn - compound means on opposite strands! Thanks for the correction and sorry for misquoting you. I said I was a beginner...