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Is it ok to ask for suggestions for simple things I can do?

Discussion in 'General Treatment' started by juniemarie, Dec 29, 2009.

  1. juniemarie

    juniemarie Senior Member

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    That I could try. Nothing fancy that involves a lot of tests or Dr's. I am new and have been reading here on the site for a few days, and I must say I am amazed at the amount of knowledge you folks have. Also how well everyone interacts with one another and how the over all feeling of this site is compassion......for each other's concerns. You seem like a big friendly family.
    I have not put my story up yet as I dont have enough energy right now. I change rapidly from day to day, week to week, and the last couple of days have been mostly in bed.
    Most of what I read goes way over my head, even without the brain fog.
    Also, I get confused about what I can do to help myself feel better..........that I can afford. So much conflicting info. Then there is the issue of what works for one may not work for another.............may actually make another worse.
    What I have(I think) is CFS. Have had it as far as I know for about 14 yrs. At first I ran around form one doc to the next getting lots of test and spent way to much money, which led to 0. Then I decided to just go with the flow.
    I felt better in that I was not spending all my money for nothing, I had extra energy for my day to day life, I got to think about and learn and involve my self in things other than CFS.
    I am a vegetarian , and read somewhere that if you are a vegetarian you can forget about getting well.
    I take nothing as far as supplements go except Vit C and D3
    In keeping with my go with the flow mentality, I treat symptoms as they come.....if I can.
    So, I have fatigue, I take adderall. I cant sleep, I take antihistamine.
    I would like to try other supplements, that are affordable and easy to get, but would like some suggestions.
    I have the reduced form of CoQ 10, Ubiquinol, but am not sure if I should take it because of all the conflicting reports, both from the top docs and people with CFS.
    The heart doc talked me into taking a statin, and I had probably the worst crash I have ever had in the entire time I have had CFS. It was truly horrible. I thought this is the end for me. Felt like I was going to die.
    Protein is also a problem for me. Again reading conflicting evidence about eating beans,lentils, whey, which would normally be my main sources.
    When I get too confused, I tend to freeze up and do/take nothing.
    Anyway these are the things I need help with and any suggestions will be greatly appreciated.
  2. laura

    laura Senior Member

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    Simple things to do --diet, supplements, 50% rule

    Juniemarie,
    Welcome to the forums. This is day 2 on the forums for me but I've been a PWC for 12 years. Some starter suggestions:

    1. DIET: Listen very closely to your body!! Notice after you eat how you feel. I can tell you if I don't eat enough protein, I don't have energy. Period. If you are not vegan, try as good a protein as you can. Maybe soy? For me I have found quinoa is easily digested. Though definately not as good as eggs or other animal protein. I follow the blood type diet, as an "O" I avoid wheat and dairy and soy. And as little sugar as possible.

    2. 50% Rule for Activity: Do 50% of what you think you can do, but not less!

    3. SUPPLEMENTS: Others on the list can help with this. But I know that research has show those with CFS tend to be deficient in magnesium and the B-vitamins. Magnesium aspartate is supposed to be easily assimilated. Good for reducing muscle aches and improving sleep. B-Vits give me energy! We're probably deficient in other things, too. So I take a multi-vitamin. And something to support my adrenals. There's a lot more but that's what I think of as essentials.

    4. Attend to spiritual/emotional needs! Do what feels good, avoid people and things that suck energy from you.

    There is soo much more, detoxification, etc., but that's a start.

    Laura
  3. Frank

    Frank Senior Member

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    Juniemarie welcome to the family ;)

    Let me add to laura's statement about the B-vitamins, that it's well know that vegetarians often don't get enough B12 especially if they don't use diary.

    About the protein: avoiding beans and lentils, i personally wouldn't do, maybe look into taking Betaine Hydrochloride before each protein containing meal.
  4. juniemarie

    juniemarie Senior Member

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    Yes the Betaine is on my list of stuff to get already. I am also wondering if I should get the methyl b12 and methylfolate?
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  6. Carter Burke

    Carter Burke Guest

    If you got such a bad reaction to statins, it could suggest CoQ10 might be very helpful - certainly suggests mitochondrial problems. (Never heard of any bad reports. A decent dose: 100-300mg/day, is usually needed.)

    Essential amino acids might be very useful if you're vegetarian - and additional L-Glutamine. Otherwise if you're not allergic to dairy, whey protein powder could be very useful. Otherwise egg protein powder. (Just that allergies to dairy and eggs aren't uncommon. I'd probably avoid Soy Protein as soy can be an anti-nutrient, apparently.)

    Lentils and beans *can* cause problems because they're high in lectins. In fact, your vegetarian diet *could* be the source of your problems.

    For me, cutting out high lectin foods: beans, lentils, tomatoes, etc. was critical in getting my stamina back. Lectin problems are probably very common in CFS. Lectins are toxins, and some of us are better at dealing with them than others. Often chronically unwell people have more problems with lectins - they can apparently suppress immune function, which can set the whole CFS thing up.

    (Trial and error is probably the only way to go with intolerances. And expect to feel worse before you feel better.)


    This guide's pretty comprehensive - goes into good detail about those mitochondrial problems which both CFS people and statin users get http://www.drmyhill.co.uk/cfs_book.pdf
  7. juniemarie

    juniemarie Senior Member

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    Lectins,& Ubiquinone vs Ubiquinol

    Wow Thats very interesting. Do you know if chick peas are a high lectin food.
    I am going to re commit to more actively treating myself. So I shall go back on the Whey,and coq10. Does anyone know if the Ubiquinol(reduced form) is really better to take than the reg. coq10 which is Ubiquinone. The Ubiquinol is a lot more expensive, but I read an article that if your over 50 or have certain conditions, its utilized much more effectively.
    From spending time on this forum and reading about what others are using I should probably get a probiotic and maybe find someone that does lympthatic drainage massage. I find this idea of trying to get the toxins cleared out very compelling.
  8. Carter Burke

    Carter Burke Guest

    Yeah, all beans and legumes as far as I know. But you might not have any problems with lectins at all.

    I was eating tomatoes and lentils almost daily for years; I'd just never considered they could be a food intolerance. But when I cut them out completely, I noticed I was getting some temperatures, and then after a week or so I got symptoms a little like depression, so I knew something was shifting. And then a few weeks later I noticed my stamina had improved quite significantly.

    But then with the whey, dairy's a common allergy. I've cut out all dairy, all gluten, obviously sugar and alcohol, high lectin foods, eggs.

    A proper exclusion diet was recommended to me as the first thing I do in my protocol - and I didn't take that advice seriously enough. It took me years to discover the lectin thing.

    And it might not be possible to be a vegetarian and get well. It would probably depend on your food intolerances, but there's so many nutritional issues vegetarians face (not least amino acid deficiencies) which will only compound and be compounded by chronic fatigue.

    But I totally understand your reasons for choosing it. I'd seriously consider vegetarianism myself if I thought it'd be in any way possible given my circumstances.

    The good (well, maybe?) news is that with so many potential nutritional problems, you might well find you can get yourself well very easily just by addressing them. You might find addressing amino acids or B vitamins alone correct things. But then usually the longer we've had these problems, the more we accumulate and the longer it takes to get back to full health.

    (Not familiar with the Q10 issue btw. I take Ubiquinone.)
  9. laura

    laura Senior Member

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    Probiotic


    I forgot, I take probiotics every day. Big help. I am sure everyone has their favorite but I have found two to be particularly effective:

    Good Belly (a drink, sold at Whole Foods stores in the refrigerated juice section, comes in individual servings with added vitamins, best, or quart size juice container) is terrific for IBS type symptoms.

    Dr. Ohhira's Professional Formula, can get it at iherb.com. Very high quality.
  10. Sunday

    Sunday Senior Member

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    I hadn't heard about lectins, and was interested to know about them. So much to learn.

    Laura, I like your 50% rule for activity, I'm going to work on that one.

    Acupuncture, both the Five-Elements kind and the more traditional kind with herbs, has been noticeably helpful to me, although there is often a detox hangover before the good stuff emerges.

    On the subject of diet, I will say that, having been a seldom-meat-eater for decades, I suddenly found myself craving meat about the time (had I known it) I was coming on with CFS. I mean CRAVING meat, and it really satisfied me. I think I needed the B12 and the concentrated protein. I do think being a vegetarian uses much fewer resources, but I can no longer function that way. I do make an effort to get good meat that's not full of pesticides and hormones, preferably from animals who have been outdoors in something larger than a pen. I know that can be hard, but it is doable, even on a budget.

    I'd also like to add that if you are adding B vitamins to your diet, the type of B12 you take may be very important. I learned on the "Hidden Story" thread that most B12 is entirely inactive, in the form of cyanocobalamin. Inactive forms are stable, cheap, and have good shelf life, which is why manufacturers like them. However they can be hard for us to convert into usable B12, and may even actively further mess up our methylation cycle. And even if we can convert them, they dump cyanide (cyano-), which our bodies must then cope with.

    I used to take a lot of B12 in various forms but when I got CFS it stopped affecting me; I didn't get the energy boost I was accustomed to. It was cyanocobalamin. Now I am on a protocol involving the two active forms of B12 (methylcobalamin and adenosylcobalamin) I really notice what they do.

    If you want to read more about the methylation cycle thing, Richvank's post on the mitochondrial thread http://forums.aboutmecfs.org/showthread.php?1929-Mitochondrial-Deficiencies is an excellent brief-but-thorough rundown. (His post is at the bottom of the page I've linked; sorry I'm not more sophisticated in my linking methods.) If you want to read more about the different forms of B12 (even the BRAND can make a difference), check out Freddd's first post on the "Hidden Story" thread, http://forums.aboutmecfs.org/showthread.php?188-B-12-The-Hidden-Story. There's tons more info on both on this forum and off, but this will give you a good start.
  11. juniemarie

    juniemarie Senior Member

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    Thanks for the links Sunday. Actually I have been reading over that B12 protocol on and off all week, and a couple of other protocols people here are trying. Its a bit overwhelming after awhile. I already have a fairly restricted diet for a variety of reasons and not sure now what I should eat. Meat is not an option.
    Just wondering if I should be doing anything to prepare my body or build up my body before starting something like the B12 protocol by Freddd. I live alone far from family and if I were to have a overly strong reaction or detox I would have to deal with it without assistance. I am mulling it over looking for the best route. I have spent the last 3 days giving my body a break from the adderall that keeps me going.........well sort of going. Its always a shock to see myself without the Adderall.
  12. Sunday

    Sunday Senior Member

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    I'd be curious to know what you use the Adderall, juniemarie, and I sympathize with your difficulties. In some ways I feel like a piker here as I do not have some of the eating difficulties others do. Are nut milks an option for you? I know some people have sensitivities, and there's the issue of arginine, but almond milk in particular is very easy to digest, tastes good, is a good form of protein (you have to check for unsweetened varieties, though). In old herbals they used it for convalescence. And how are you with eggs? I get local eggs and often eat them raw, another old-fashioned body builder (I generally eat raw eggs by putting them into a banana smoothie).

    I understand your concerns over having a strong reaction; do you have any local friends you can ask to check in with you while you are doing this? I'm "lucky" enough to have a few local friends with Lyme's and CFS (two in remission for years), so they really "get" it. Now I've been going a little more public (selectively) with having CFS, I've also been surprised at the people who either know someone with CFS/FM or have it and are managing it themselves.
  13. juniemarie

    juniemarie Senior Member

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    Well as far as protein goes I have milk a and yogurt every day and I was having whey but now it seems Cheney is saying its bad. Gosh its hard to keep up with all the back and forth. Its enough to make you afraid to eat anything.
  14. juniemarie

    juniemarie Senior Member

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    Sunday Sorry forgot to answer your question about the adderall. Its to give me get up and go Been using it for 4 yrs. But when the CFS symptoms get bad it wont override them. The CFS has the last word. Lately, its getting worse.
  15. Sunday

    Sunday Senior Member

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    Hi Juniemarie, I think the reason whey is out is that it's a glutathione precursor. Glutathione interferes with B12 receptors which interferes with methylation. Many people are focussing on as a foundation problem for CFS. I spend a lot of time over on the B12 threads, so I'm learning about this stuff.

    I hope I wrote this down understandably, I'm pretty foggy right now, just had a trip to town and did a lot of stuff.
  16. Esther12

    Esther12 Senior Member

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    I was thinking that it would be useful if we could try to put together a flow diagram: one with yes/no type guides to help people find widely recommended tests/ suggestions/ whatever. It could be a mighty and controversial task, but it would be helpful for people just coming here.
  17. Sunday

    Sunday Senior Member

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    I like that idea, Esther12, but you're right about its being a massive organizational project. Which might be a bit problematic with so many brainfoggers about....but then CSFers are an adaptable innovative bunch (we kind of have to be); maybe there's a way to work it.
  18. juniemarie

    juniemarie Senior Member

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    Sunday I understand and have been following the B12 thing when I can. Right now in the middle of a divorce where hubby wants to take everything and leave me with no resources, so I am trying to put together a brief summery of what CFS is and the symptoms, and the way it reduces ones ability to preform basic everyday tasks. Something to give the judge and the lawyers. Something that will also show what the kind of stress my husband is putting me through does to our bodies and our ability to cope.
    I am almost done with it. Thank goodness! Then I can get serious about choosing and starting on one of the protocols, I am leaning towards RichVanK's protocol. Thatis if I have enough money after the divorce to buy the stuff I will need and to get some tests done.
  19. juniemarie

    juniemarie Senior Member

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    I have been drinking purified water for 15 yrs. Of course people absorb impurities through there skin when they bathe.
  20. kurt

    kurt Senior Member

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    Just want to point out that some of the methylation genetic studies done by PWC have shown that methylation problems can be opposite from one person to the next but produce similar symptoms. That is a complex system that can break-down many different ways. B12 is not the only factor for certain, and whey protein may help some people and not others. So then the pendulum of advice swings back and forth.

    Something interesting about glutathione is that it blocks HHV replication (herpes HHV1-HHV6). And CFS involves some major problems with reactivated herpes. Also, herpes is sensitive to stress levels (presumably cortisol), and when it flares it depletes glutathion. And when glutathione levels get low the herpes can flare, creating a vicious cycle. Add to that the genetic individualization of methylation problems, and I think we all need to be careful about expecting that what works for one person will work for another. We just have to carefully try different tests and treatments.

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