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ME/CFS: A disease at war with itself
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Severe headache/migraine after SAMe + b12

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Gavman, Jan 24, 2012.

  1. therron

    therron

    Messages:
    94
    Likes:
    13
    California
    Hi Angela and Freddd,
    I have always been the one in charge of my health, and any gains that I have made have been due to my own research, not the help of a physician or alternative practitioner. The only reason I even know that I have two MTHFR mutations is because four years ago, I tracked down information and forced my lame pracitioner to order the test. Upon identification of these genes, I was able to completely turn around the health of my 80 year old mother and 52 year old sister by giving them advice on the methylation protocol.
    My body is trickier, so I didn't get the immediate and huge turnaround that my family did, but I'm getting there (I do have 80% less feelings of stress and 25% more energy than a year ago, and am still moving forward). Low and slow is the only way that works, even after 3 years of experimenting with protocols. I take everything that Freddd and Rich (and all of the rest of you) say, and reinterpret it for my own body. I research A LOT.
    I am so thankful for the advice on this site, but I totally agree with Angela that it is great to have someone who understands MTHFR and methylation so that when I do need medical tests, or a bit of guidance when facing potentially serious physical symptoms (which I have had recently), I've got someone in my court. This is especially true since I don't have a regular GP that I can trust. I got close when I found a doctor whose autistic son had the same MTHFR genes as I do, but this doctor was new and didn't understand how to apply his knowledge of alternative practices to the middle aged CFS/ME world. It takes me over a month to get test results, and that is only after calling him 3-4 times. So, onward and forward. Thanks to all for your input./
     
  2. Freddd

    Freddd Senior Member

    Messages:
    4,576
    Likes:
    957
    Salt Lake City
    I think many of us can commiserate (or should be able to empathize) with your life long quest in searching for answers and just coming up empty. I've watched the "best" specialists botch cases for decades simply because they were too tired or burned out to care anymore so I'm pretty sure your average primary care doctor is not likely to figure out any tougher cases like this. I agree that pursuing the current treatment makes sense but how can you be sure that this doc will not encourage that? It doesn't seem to conflict with most methylation pathway treatment in general so I don't see how its mutually exclusive.

    But also, everyone is so different that it really never hurts to have someone well versed in this pathway that can guide you based on your personal genetic issues. Manytimes, just having the input leads to all sorts of ideas and sorting things out. I like that she's seen and figured out so many disease processes in both alternative and allopathic medicine and understands the genetics. She's the only one, out of probably 40 doctors, who found a blatant mitochondrial disorder in my neighbor's son(the family practice doctor) since she didn't just assume it was methylation or heavy metals or muscular dystrophy, etc, because she doesn't take the easy way out.

    I felt the same way that you did until I saw her but in all honesty, I was amazed at her committment. Especially when I found out she's so booked because she takes the entire 1-2 hr apt time after she sees you just to think it over more and do a little research while its fresh in her mind instead of doing what everyone else does, crams in two more people into that spot to make more money. Then she takes her weekends to do more of that. It takes someone who is truly interested in figuring people out because they enjoy what they do. Her office assistants are the most devoted people I've ever seen for this reason. Sure, we all want that magic cure or that genius doctor to magically figure it all out instantaneously, maybe something like House MD but hopefully with less A$$ to go along with it. But we've also seen what its really like out there so when you get someone who truly cares about how things turn out for you or your child, its the most refreshing thing you can imagine. I missed feeling that way as a newer nurse so many years ago and she reminded me about what was most important.

    I don't think Therron's saying she expects an instant cure or even wants to stop her active folate protocol as much as she wants a medical provider who actually understands this whole process while weaving these concepts together with other health disorders in order to problem solve or fine tune stuff. Nothing beats having a doc who can do that, especially when she can order all the necessary tests and even prescribe what my family needs on ocassion. And where she's not offering any instant cures (so is definitely human) she's also capable of doing all of that and getting to the bigger picture. Sometimes, thats all you need to get the rest of the way. Maybe its just another way of looking at it.

    Angela[/QUOTE]

    Hi Angela,

    I assure you I went to plenty of specialists of every variety. What I was trying to say in my own convoluted way is that I have seen people who get distracted with too many theories so they skip important steps because of a new theory. It was merely a cautionary. I also elliminated docs very quickly after the first 50 or so. All the ones who were merely offereing warmed over theories and therapies that I had already been through I never went through more than twice. Right now I would ask how they interpret certain things. I spent more than 20 years evaluating docs and treatments, using indirect measures of quality and effectiveness. Now I was doing it from inside the plan looking for those docs who were most effective, fewest redos or revisions, best results via effects on meds and followup etc, best satisfaction, best agreement with preauthorization consultants and various other measures depending upon what were were looking for. Looking for somebody who is in theory treating CFS/FMS and similar syndromes (same universe of symptpoms) I would ask about things that we know about. I would ask what provider uses for treatments and why. If I had already run into that and been through the protocols, and provider had nothing else, I leave. If provider doesn't use b12, mb12 and adb12 specifically, or hycbl with the reasoning Rich has supplied, if provider calls low potassium "detox" and/or induced or paradoxical folate deficiency is called "detox", provider is probably too ignorant. If low potassium and low folate are not noticed or treated, these are not awfully subtle. Seeing them only requires that a person not have other theories blinding them. My internist, when asked about the potassium passed that test. Like all other providers I have talked with he wouldn't recoginze low folate if he had it. My internist I came for a first appointment 2 days before starting mb12. Three weeks later he could see the huge change and relaized he had no idea. So he monitors things as he sees fit, prescribes things I need prescribed, humors me on 30mg a day injection of mb12 as it is very clear that it works. If provider wants to do injections of cyanocbl, turn around and walk out. Provider is much too ignorant to understand to help with this program. I started interviewing the docs instead of having an exam. It was cheaper and faster and I didn't have a $1000 worth of useless lab work. I had what I called "my traveling collection" with years of tests, scans, x-rays, radiology reports, etc. Towards the end I started asking about the real b12s instead of the lab mistake that got the Nobel prize. I walked out right then and there for any that said that cyanocbl was the real and only b12. I was already taking it in theraputic quantities and it did almost zero. By that time I had gone through a multitude of attempted therapies and I wasn't going to go through them all for the third time. I already know what wouldn't work becasue I had tried it. You have to know something about what you are doing, like the 33 things that haven't worked yet. I figured out that I had a problem around cyanocbl back in 78 or 79 when there was no possible correction. The correction wasn't available until 1998 in the USA, and I didn't find it for 3 1/2 more years. Eliminate the physical injury symptoms and there was one and only one thing that could account for the other 200 symptoms. Nothing else could account for more than 20 or 30 symptoms. I trusted my analysis.

    I guess one has to decide about setting standards of knowledge for solving a mystery that sits in the middle of an information illusion. Knowing the answer of what allowed me to be cured makes it easy to reject various theoretical foundations of what is going on. A person isn't going to find a perfect doc any more than a perfect spouse.

    I don't think Therron's saying she expects an instant cure or even wants to stop her active folate protocol as much as she wants a medical provider who actually understands this whole process while weaving these concepts together with other health disorders in order to problem solve or fine tune stuff. Nothing beats having a doc who can do that,

    I was never able to find such a knowledgeable doc. I did find one who was willing to do his best to keep me out of trouble and take care of other health disorders without fighting against my pursuing the active b12 protocol and is in fact very interested in it. It's difficult to argue with the type of success I demonstrated though I've had some that would. Interviewing the doc beforehand saved me a lot of money and a lot of miserable side effects of things that in retrospect couldn't possibly have worked. When it's b12 and methylfolate that is needed, there are no drugs or herbs that can do any healing. All they can do is try to squash symptoms. Don't get me wrong, I'm all for controling chronic pain. I'm even more for preventing it. Tests that were are using are based on a population that has chronic b12 deficiencies and some percentage of natural and artificial paradoxical folate deficiency. Paradoxical folate deficiency is built into "normal". Chronic b12 deficiency is built into "normal". Look at as simple a test as CBC. The abnormal of 40 years ago has become "average: and "normal" and "in range". The problem with the b12/folate situation is that there are hundreds of processes potetially not working or not working well causing hundreds of symptoms. In a millenia perhaps they can come up with 300 drugs that take care of all the individual biochemical irregularities caused by b12/folate insufficiency. Who wants to take 300 drugs a day at a cost perhaps of $100/month each when a few dollars worth of vitamins do the entire job. Who can wait 1000 years for all that research, if our society lasts that long. Everybody alive may be eating paleo by then with no choice.

    So the theory that a doc uses as there basis is either correct or not. If not they will be pulled towards wrong choices over and over again.
     
  3. greenshots

    greenshots Senior Member

    Messages:
    399
    Likes:
    139
    California
    I guess we'll see what Therron thinks in the next few weeks then. I'm truly interested since I honestly think the world of her. But I don't admire her for knowing everything. I admire her for knowing alot and admitting when she doesn't something. She often asks me what I think since "You know your body better than anyone else" and that alone amazes me! Not that I'll necessarily know the answer but the subtle thing that could be missed here is that she listens to the patient and that is really the bulk of the battle here. As you've pointed out, Freddd, its a matter of having someone who is willing to listen to where you've already been and not try to force you back through roads you've already been down. Time wasted is a misery! Nothing was worse for us than when we'd see another "autism" specialist who wanted us to try something that clearly didn't work the first time because we didn't do it "long enough". It could have been 6 months and it wasn't somehow long enough to them! I hated that crap and like you, I walked out and never went back.

    When I met my doc I figured I'd at least have someone willing to order the things we needed or to write letters to the school or whatever. I never counted on the fact that she wanted to see us better and still sends an email out about something that specifically pertains to us if she hears about it at a conference or reads a new article. I've NEVER had that before! One of my girlfriends said she sent her a letter & article about a treatment for endometriosis 2 years after she saw her daughter for behavioral issues. She never even saw my girlfriend but remembered her comment about suffering from bad endometriosis and sent the article on to her. It turns out that the treatment has been very effective for my friend but even if it wasn't, she was so touched by that she called me in tears. Its really neat just knowing that she's still thinking about us as PEOPLE instead of just another case. I know she's gotten much busier this year so maybe things are different but I honestly doubt it.

    But I sure do agree with you Freddd that if they aren't willing to listen and want to force their worn out theories on you that you should always keep looking! And sadly, in my experience as an old ICU nurse and patient/parent, that's probably 90% of them out there (99.8% if you're in managed care). I also agree that this protocol shouldn't stop for something else, unless its something else highly tailored to her somehow and there's good reasoning behind it. My doc's been pretty open minded about the things I've wanted to do and some of them are embarrassing now that I look back but I was desperate! But she told me that as long as something doesn't hurt me or the kids, she'll do what she can. We've been really lucky to find her.

    Angela



    Hi Angela,

    I assure you I went to plenty of specialists of every variety. What I was trying to say in my own convoluted way is that I have seen people who get distracted with too many theories so they skip important steps because of a new theory. It was merely a cautionary. I also elliminated docs very quickly after the first 50 or so. All the ones who were merely offereing warmed over theories and therapies that I had already been through I never went through more than twice. Right now I would ask how they interpret certain things. I spent more than 20 years evaluating docs and treatments, using indirect measures of quality and effectiveness. Now I was doing it from inside the plan looking for those docs who were most effective, fewest redos or revisions, best results via effects on meds and followup etc, best satisfaction, best agreement with preauthorization consultants and various other measures depending upon what were were looking for. Looking for somebody who is in theory treating CFS/FMS and similar syndromes (same universe of symptpoms) I would ask about things that we know about. I would ask what provider uses for treatments and why. If I had already run into that and been through the protocols, and provider had nothing else, I leave. If provider doesn't use b12, mb12 and adb12 specifically, or hycbl with the reasoning Rich has supplied, if provider calls low potassium "detox" and/or induced or paradoxical folate deficiency is called "detox", provider is probably too ignorant. If low potassium and low folate are not noticed or treated, these are not awfully subtle. Seeing them only requires that a person not have other theories blinding them. My internist, when asked about the potassium passed that test. Like all other providers I have talked with he wouldn't recoginze low folate if he had it. My internist I came for a first appointment 2 days before starting mb12. Three weeks later he could see the huge change and relaized he had no idea. So he monitors things as he sees fit, prescribes things I need prescribed, humors me on 30mg a day injection of mb12 as it is very clear that it works. If provider wants to do injections of cyanocbl, turn around and walk out. Provider is much too ignorant to understand to help with this program. I started interviewing the docs instead of having an exam. It was cheaper and faster and I didn't have a $1000 worth of useless lab work. I had what I called "my traveling collection" with years of tests, scans, x-rays, radiology reports, etc. Towards the end I started asking about the real b12s instead of the lab mistake that got the Nobel prize. I walked out right then and there for any that said that cyanocbl was the real and only b12. I was already taking it in theraputic quantities and it did almost zero. By that time I had gone through a multitude of attempted therapies and I wasn't going to go through them all for the third time. I already know what wouldn't work becasue I had tried it. You have to know something about what you are doing, like the 33 things that haven't worked yet. I figured out that I had a problem around cyanocbl back in 78 or 79 when there was no possible correction. The correction wasn't available until 1998 in the USA, and I didn't find it for 3 1/2 more years. Eliminate the physical injury symptoms and there was one and only one thing that could account for the other 200 symptoms. Nothing else could account for more than 20 or 30 symptoms. I trusted my analysis.

    I guess one has to decide about setting standards of knowledge for solving a mystery that sits in the middle of an information illusion. Knowing the answer of what allowed me to be cured makes it easy to reject various theoretical foundations of what is going on. A person isn't going to find a perfect doc any more than a perfect spouse.

    I don't think Therron's saying she expects an instant cure or even wants to stop her active folate protocol as much as she wants a medical provider who actually understands this whole process while weaving these concepts together with other health disorders in order to problem solve or fine tune stuff. Nothing beats having a doc who can do that,

    I was never able to find such a knowledgeable doc. I did find one who was willing to do his best to keep me out of trouble and take care of other health disorders without fighting against my pursuing the active b12 protocol and is in fact very interested in it. It's difficult to argue with the type of success I demonstrated though I've had some that would. Interviewing the doc beforehand saved me a lot of money and a lot of miserable side effects of things that in retrospect couldn't possibly have worked. When it's b12 and methylfolate that is needed, there are no drugs or herbs that can do any healing. All they can do is try to squash symptoms. Don't get me wrong, I'm all for controling chronic pain. I'm even more for preventing it. Tests that were are using are based on a population that has chronic b12 deficiencies and some percentage of natural and artificial paradoxical folate deficiency. Paradoxical folate deficiency is built into "normal". Chronic b12 deficiency is built into "normal". Look at as simple a test as CBC. The abnormal of 40 years ago has become "average: and "normal" and "in range". The problem with the b12/folate situation is that there are hundreds of processes potetially not working or not working well causing hundreds of symptoms. In a millenia perhaps they can come up with 300 drugs that take care of all the individual biochemical irregularities caused by b12/folate insufficiency. Who wants to take 300 drugs a day at a cost perhaps of $100/month each when a few dollars worth of vitamins do the entire job. Who can wait 1000 years for all that research, if our society lasts that long. Everybody alive may be eating paleo by then with no choice.

    So the theory that a doc uses as there basis is either correct or not. If not they will be pulled towards wrong choices over and over again.[/QUOTE]
     

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