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supplements to take/ not to take with xmrv

Discussion in 'XMRV Testing, Treatment and Transmission' started by leaves, Nov 11, 2009.

  1. leaves

    leaves Senior Member

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    Hi All,

    After some lurking I decided to join the forum, because I grew fond of you all :)
    I have a question I hope you can help me with.

    As many people with CFS I use a lot of supplements (gives me the idea that I at least have some control) now with the XMRV however, I am worried I do something wrong.

    If I understand correctly, we should not take any supplements that support the immune system, as this will exacerbate the virus.
    Supplements such as curcumin, olive leave, monolaurin, virastop are supposed to have antiretroviral effects, so it is safe to take those I reckon?
    And neuro protective supplements as b12, carnitine, choline, ALA, and q10 should also be fine no? Would D-Ribbose be okay?

    Any advise on which supplements or foods to take or not to take would come appreciated!
     
  2. _Kim_

    _Kim_ Guest

    Hi leaves (as in "autumn" or "leaves the party"?),

    I noticed your post on the XMRV testing/waiting thread. I'm so glad you've hopped on board and are willing to share your results and perhaps, get some support whether you test positive or not. Welcome.

    Good questions and I'm afraid that we don't have clear answers yet.
     
  3. Chris

    Chris Senior Member

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    Victoria, BC
    Welcome to the gang!

    Hi, Leaves; welcome among us! But you ask a difficult question; for instance, do you have any other medical diagnoses that might complicate the picture? I for instance have documented CAD, and have to take that into consideration--a low fat, basically vegetarian diet is a necessity, though it might not be for others without that problem. You are more than your CFS, though at times it might seem to have swallowed you.

    Then it also depends on whom you think offers the truest model of the disease and therefore its possible treatment; if you follow Paul Cheney's advice in his latest DVD, you will probably avoid CoQ10 and Ribose. If you follow Martin Pall, you will take both. I think olive leaf and some form of B12 may be Ok by most, but even there you will find differences; Rich van Konynenburg prefers the Hydroxy form of B12, but Freddd, who also has a following on this site, likes Methyl and Adenosyl better. Curcumin might be almost safe, but if you follow Freddd, all things that promote glutathione production are negative, and that includes curcumin --and whey and NAC.

    So unfortunately you will have to make choices of what understanding of CFS makes most sense to you, and then use that as a guide among all the possibly relevant and helpful supplements that you might take. You will find many suggestions as you make your way through the now extensive posts on this forum--all I can say is have fun, and I think you will find a lot of information to think about. I have certainly found it very helpful!

    Best wishes, Chris
     
  4. Victoria

    Victoria Senior Member

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    Hi Leaves,
    Chris makes a valid point here. We are more than just CFS. Many, if not all, have other health or social issues to consider.

    Vegetarian or Carnivore, Vegan, Dairy free, Grain free - what ever suits you.

    There is no right diet, for all the people, all the time. There is only the right diet for you at this current time in your life. Just as there is no right supplement plan that is appropriate for all the people, all the time.

    You should follow a tried & tested diet which you understand, is affordable & do-able. There's no point my extolling the virtues of a fresh, organic diet if you cannot afford or do not have access to fresh food. Do you live in a remote location? Do you have other family members to consider? Do you have transport? Are you interested in buying online?

    I have financial limitations, so I need to consider a new, previously untried supplement very carefully. If I find something with amazing benefits which really work for me, do I have to let go some other supplement which I previously considered absolutely essential (& I thought I couldn't do without)?

    What do you do when the money runs out, or is limited? Do you go for fresh quality foods over supplements?

    Do you have cognitive problems? Can you remember, what, when, how many tablets to take. Do you understand the importance of following the directions - before food. Take with food. Take after food. Sometimes I need to stop & really concentrate to remember what supplements I've taken in the last five minutes, especially if I'm rushing to get ready for work in the morning.

    I'm one of those people who needs routine & order in my life. I need procedures & clear directions. I get confused easily some days. I can't handle too many tasks at once.

    And I'm no longer hesitate about admitting my failings (I used to be terribly embarrassed about my "brain fog" or lack of comprehension).

    Sometimes I don't understand the words or abbreviations some members use. I need to ask, or look them up in a dictionary (or on the internet). I've got "myDr consumer medication" bookmarked for easy referral. I also have an internet "word definition" site bookmarked, so I can look things up easily.

    That's the way I learn.

    Have you had the appropriate blood or other tests (or scans) to evaluate your current nutritional deficiences (if any)?

    I believe in illnesses like ME/CFS/FM, the best way to improve is be pro-active & educated. Read as much literature as possible. Be open to alternatives. Understand what you are reading & if you don't understand, ask someone who can explain the information in such a way that you do understand.

    Don't be afraid to ask questions, but don't assume the answers are always right & should automatically follow (as gospel truth).

    Be open to the possibility that a medical professional is limited by his/her training, experience & knowledge too.

    And so it is with Health Food Shop or Pharmacy staff. Ascertain if they are knowledgable on supplements. No point buying a supplement because it was on special this week, or you were impressed by the advertising literature of a miraculous result. Don't buy a supplement because the shop assistant tells you that supplement cured them.

    You are not "them".

    You are unique & individual. Learn to see your body each morning with open eyes. Listen to your body.

    Well said, Chris.

    Leaves,

    Knowledge takes time. It doesn't happen overnight.

    The most knowledgable members of this forum had to start somewhere - they would have started at the beginning.

    Take your time. Don't rush into anything. Mistakes can be costly.

    Medical science is evolving all the time & new Nutritional supplements are coming on the market. There's probably a few "duds" amongst them too -companies out to make a quick buck.

    There are so many informed & educated members of this forum, and I know they will be only too happy to share their knowledge & experience with you.

    And please don't hesitate to share your experience too. We can all learn from each other.

    Victoria :)
     
  5. leaves

    leaves Senior Member

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    Thank you!

    Hi All,
    Thank you so much for your advice and warm welcome :)

    To Kim
    Thanks, that would be Leaves as in autumn (no plans of leaving yet)

    To Chris:
    Thanks! Aside from fatigue, neuro, gastric, endocrinologic mess, food intolerances and cognitive stuff I dont have medical issues. Afer a deep crash a few years ago I am doing much better now.
    I don't follow any Dr's protocol (and I dont know any of the dr's you mention :))
    Over the years I have just tried whether various bits and pieces (that made sense to me) fit me using the trial and error approach. I am on a strict grain, egg and nightshade and sugar free diet, which works wonders for me energy wise, and with supplements I focus on neuroprotective ones, which have notably improved cognitive performance (although still by no means well). This year I have also been working on improving my methylation cycle, as tests suggested that that was not working properly, but no results so far. Actually the last 2 years I reached a plateau, a bit of fluctuation but pretty stable.

    To Victoria:
    I think I got my diet figured out (As described above) and I eat all organic:). I think the diet intervention was and is the biggest reason for my well-being, no supplement could beat that. I was just wondering whether there was any particular foodstuff that promoted xmrv, but I guess that is just to early to tell.
    I have never seen a CFS specialist, because I always thought that those were only into behavioral stuff and I never identified with that image of CFS.
    I have been doing a lot of self research and have seen some (very competent) holistic doctors, who have treated my gastro infections and did the nutritional tests with me, i am treating my deficiencies.

    Well thanks again :)
     
  6. Victoria

    Victoria Senior Member

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    Leaves,

    sounds like you know where you're heading & the right path to follow. So I guess the answer to your question is:

    It's too early to say whether there is any supplemental avenue to follow with XMRV.

    I think it's too early to make any new decisions about treatment at the moment. As I have been getting progressively fatigued with all the extra typing I've been doing, I saw my general Dr last Wednesday, and out of the blue, he suggested some B12 injections. I was really surprised as he'd never mentioned it before.

    But since my life is all about pain (with secondary fatigue), maybe this was the first time, I had admitted I was getting really exhausted at work & having trouble walking to/from work (15minute walk). I have been stopping 3-4 times on this 15 minute walk home each day - not good (for me, who used to do about 50km power walking each week back in 2003 & 2004).

    He gave me a B12 injection on the spot & I have to say it really, really hurt for about 2 hours, but I actually felt "normal" for about 8-10 hours. It was kind of exciting. I'm usually lucky to get one pain free day a year (with this FM). Next morning I had a second injection & there didn't seem to be any noticable effect at all. My Dr is away on holiday for a week, so the 3rd injection will be about 10 days away.

    Interesting trying something new.



    Victoria
     
  7. susan

    susan Senior Member

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    B12

    Victoria,
    I got a Methyl B12 shot about 3 wks ago and it was like I was NORMAL again..... I thought I died and went to heaven as I slept better. However it sent me to the moon 1 day later, too much adrenaline was running and I could not sleep one night.

    In the last week 10 days I have had 3, but cut them in half...giving them to myself...ouch. I have noticed no difference but I have been very ill with a serious infection and having to inject anti biotics. I am starting to feel I will never get out from under this rock.

    I met the most amazing Naturopath here who used to be a Doctor. He was the MOST intelligent person I have met in my 21 yr journey with this illness. He said " why have you stayed sick for 21 Yrs" I said because I cant find anyone who is interested in helping me.

    He claims our illness is genetic...wrong parents. We have become weakened as we have bred out from 6 ancestors over millions of years, thru toxicity, pollution, vaccinations etc He says do you want serious test done? I said Yes. He said if you are coming to me to fix holes I am not interested in treating you. I want to find what is causing your problem....!!!!!!!!!.


    Now when he said are you prepared to spend some money...we yawned, we are used to that. He apologised when he said it would cost $1000 and we said that is Ok. He said all the tests will go to America as they have equipment there than can look at the DNA of a parasite.... Tests are stool, urine, hair.


    He says I cant fix your gene defect but I can go around it. Like Rich on other posts he believes the same, blockages in the methylation cycle , like cars on a busy freeway going happily along until a lorry breaks down in one lane and everything backs up and cant go onto the next phase of the journey, just like our bodies so toxins cant get away, immune system suffers, viruses flood in.

    He only charged us $50 for 1 hr which was amazing!!! Some of these blockages are to be treated with mega doses of B12 zinc and B6 because the body is not manufacturing them due to the break in the link.

    So that is what I am going to do and worry about the money later. My years are running out.
     
  8. moonchild

    moonchild

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    Olive Leaf

    Hi Leaves et al

    Just wanted to add a little comment on the Olive Leaf extract question...I'd been taking it continuously thinking i was supporting my immune system and doing good. A chat with my osteopath/naturopath a while ago made me change tack with it though - in his opinion (and i imagine this might be one of the cases where you find a few conflicting opinions, just to make things EVEN more complicated for us) it is way too strong for people with ME to be taking continuously. He recommends taking it only when you feel a cold/flu/something additional coming on and astragalus for supporting the immune system on more regular basis....this advice was pre XMRV days and i have been wondering too about whether we should be changing direction with supplements. Anyway, just thought i'd pass it on in case you wanted to look into it any further...

    I've been on squillions of supplements for years - very doctor or natural medicine practitioner i see seems to add more. I've never felt they really made a difference though (other than to the bank balance!). Recently though someone suggested they may actually be making things harder for my body as the liver is having to contend with processing them on top of everything else. Feel like i've been a little better since i started taking less, just a matter of experimenting to somehow find out what my body does need...Not simple is it?

    Blessings to all...hope this is one of your better days.
     
  9. Victoria

    Victoria Senior Member

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    Melbourne, Australia
    Hi Susan,

    So you too had the wonderful reaction from the first jab of B12. Isn't it a wonderful feeling.

    I only ever feel that good after a procedure involving an anaesthetic (ie before the anaesthetic has worn off & I'm 100% pain free).

    It's only when you have the "perfect" day that you really truly understand how bad you feel for the other 364 days of the year.

    Maybe having the 2nd one 24 hrs later was too much for me. I certainly didn't feel good the second time around.

    I'm very pleased to hear you had a favourable visit to this Dr turned Naturop. And to get a full hour for ony $50 is unbelievable.

    Please let me know how you go after the results of the US tests return.

    I was going to say 21 years is a long time to be sick - I forget sometimes that I've had back, hip, neck, shoulder pain & severe headaches on & off since 1980 which I guess is really 29 years, but I have had periods of extreme wellness during that time, so it hasn't been 29 years continuously.

    Do let me know how you go, please. Sometimes I think Australia is a bit behind the rest of the Western world in diagnosis & treatment of ME/CFS/FM. I do wish I didn't have severe lumbar disc disease - I would be interested to know exactly what was left if I had a perfect spine.

    Victoria
     
  10. Hysterical Woman

    Hysterical Woman Senior Member

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    moonchild/olive leaf

    Hi moonchild,
    Just a comment about olive leaf. I agree that it might be too strong for some of us. When I was on just a few drops of the extract each day I had what my neighbor told me she thought was a myclonic seizure. Neither of us have medical backgrounds except for research we have done on CFS (for me) and MS (for her). I forgot to take the extract after a meal and decided to go ahead and take it anyway. I became light headed, shaky, and had partial blindness in one of my eyes for about 30 min. We were on the way to the hospital when it all seemed to wear off. Needless to say I am very careful with it now.

    However, I have discovered that I can take just the herb in capsules (not the extract) and it helps my energy levels and cognitive dysfunction. I don't take it all the time, tho, I am also experimenting with inosine and just got some artensunate.

    Please keep us updated with your progress and what you are trying.

    Take care,

    Maxine
     
  11. minimus

    minimus

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    The supplements Dr. Cheney is currently using are: artesunate/wormwood, immunextra, isoprinosine/inosine, pure glucose, low-dose DHEA, folapro, high-dose hydroxyB12 injections (30mg/cc) once or twice per day, Kirkman mag sulfate cream, Mediherb Vitanox, organic olive oil, colostrum, Seacure, mutaflor/s.boulardi/vsl#3 (probiotics), kefir.

    He recommends against using CoQ10, d-ribose, fish oils, l-carnitine, methylB12, and NT factor, and high doses of other antioxidants like vitamin C. Also, fructose and sucrose are big no-nos.

    All of the supplements he recommends cause an improvement in IVRT on echocardiography among his patients. All that he cautions against cause a worsening in IVRT.

    His supplement protocol tends to change over time, but I would say that the trend has been toward a reduction in the number of supplements recommended to patients, as he thinks many of them are theoretically contraindicated.

    It will be interesting to see if XMRV findings cause a change in his protocol, which to date largely avoids pharmaceuticals except for the purpose of improving sleep.
     
  12. shrewsbury

    shrewsbury member

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    great cheney supplement summary

    Hi minimus. Thanks for the great summary. I can't read anything with much complexity so have been having a tough time trying to figure out what the protocols each dr recommends are. This is so helpful!

    islandfinn:)
     
  13. Alice Band

    Alice Band PWME - ME by Ramsay

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    Thanks Minimus!

    Did you write that as a Cheney patient from your actual treatment plan or from a discussion with him?

    Your input is much appreciated
     
  14. cfs since 1998

    cfs since 1998 *****

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    Re: olive leaf extract. I don't understand the claim that this is too strong. We need something strong. If you have adverse reactions you can just start very slow and titrate up. To me the idea of replacing OLE, an antiviral, with astralagus, a very mild immune modulator, doesn't make much sense. The latter is not going to do anything. Just IMHO.

    re: Cheney's protocol. Thanks for posting the supplements he uses, minimus.
     
  15. moonchild

    moonchild

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    weldman/olive leaf

    HI Maxine

    Wow, that sounds scary...I've been feeling like i'm doing a little better on the astragalus and if i forget to take it for a little while it seems like things get a little worse. Never any absolutely clear answers when things are as complicated as this illness is though.

    Inosine - had read something about that (and vit D) in a post on preventing H1N1 recently but had never actually heard of it before. Is it also something you buy at a healthfood store? So much to learn and so much out there to read...

    Take care.
     
  16. Hysterical Woman

    Hysterical Woman Senior Member

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    Olive Leaf Extract

    Hi moonchild,

    Losing site in one of my eyes was incredibly scary. Now I cannot say that it was positively the olive leaf, but it was the only thing that I had changed and for the first time I took it on an empty stomach. I am not currently taking the olive leaf (just the herb in capsules), not the extract, but I did not have any problems with that. It might be a good way to "work up" to the extract if that is the way you want to go.

    Inosine, I believe, is a precursor to an amino acid. Some athletes use it to increase stamina, but I think that is has lots of other properties. You can google it and get some great info, just beware of getting info from people who are trying to sell you something :)

    The brand I use is Source Naturals (this is brand my friend who sees Dr. Cheney uses). It is not expensive and I try to follow Cheney's pulsing dose recommendations. I order mine thru the internet, and to get the best price I go to thefind.com and type in Source Naturals Inosine.

    Good Luck,

    Maxine
     
  17. Daisymay

    Daisymay Senior Member

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    Thanks V much Minimus

    Thanks v much Minimus for telling us what supplements Cheney is using just now, appreciated.

    BW,

    Daisymay
     
  18. Mark

    Mark Acting CEO

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    Hi Leaves,

    Friends have asked me this question, and all I've had to go on is a post somewhere on this forum which I think was a bit of a 'leak' on what an X+ patient was prescribed by Dr Peterson. I would consider that to be about as close to "straight from the horse's mouth" as it gets, but of course that's almost certainly taylored to that person's circumstances and detailed test results, and likely somewhat experimental.

    Still, it sounds fairly simple and generic in a way:
    Curcumin, Vitamin D, Non-steroidal anti-inflammatories
    plus 'possibly' some med I'd never heard of, if you search the forum for the above I guess you may find the post I'm referring to.

    I think Curcumin was recently found to have miraculous cancer cell-exploding properties and of course it may do more. The XMRV replication findings would suggest managing cortisol, inflammation and hormones might be the plan here, although please do note I don't really know what I'm talking about here - the people posting above know far more and thei advice is all good, maybe they can comment on the above treatment strategy?

    End of the day, my philosophy has always been: I'm the doctor, trial and error - I can't afford to do it any other way and although it's been a slow process, I feel like I'm getting there. I'm now taking anti-inflammatories whenever I have the slightest trauma like toothache etc, idea being to stop inflammation from triggering a relapse, which always used to happen after triggers like that. Also if I start relapsing, I'll go onto the protocol above. Finally I made a huge step forward when I had a set of rather sensitive allergy tests (food + environmental) and identified a bunch more mild food sensitivities I wasn't aware of. I have no real vegetarian option, because I've become sensitive (not allergic) to egg, soya, chicken, maybe pork, some fish, tomato, egg, and wheat. Dairy is absolutely fine though! I avoid all of those most of the time, after a month or so I can tolerate a little of them, which I do to preserve some kind of balanced diet, but if I persist at all I really feel it. Roughly same story with environmental allergens.

    I did have a big programme of supplements a few years ago, but XMRV news seems to confirm my finding then: that some were good, some bad. Also I reckon after a year or so's programme of supplements it's done most of what it's likely to do, and I did improve during that time, but now Vitamin D is all I take as far as actual supplemtns are concerned.

    Just my personal take, and I absolutely agree with what's been said above, I think it really is a completely individual question that you can only figure out with the right tests and/or some elimination-diet experimentation.

    Hope that's helpful.
     

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