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beta carotene and mcs and cfs.....porphyria key?

Discussion in 'General Treatment' started by xrayspex, Jul 14, 2011.

  1. xrayspex

    xrayspex Senior Member

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    I have recently started taking beta carotene supplement and also evening primrose oil (fish oils don't agree with me)

    It seems like the combo is helping me with chemical sensitivities

    I feel mellower, like brain adjusting period

    I got the idea to take concentrated beta carotene while reading about remedies for porphyria.....I suspect porphyrias may be broader in scope and more common than understood.....certain features of my cfs like sun/heat sensitivity, chem sensitivity, carb craving etc make me wonder if could have a rare form

    anyway, I usually don't have profound results with supplements, can't tolerate a lot of them or don't notice anything.....so I will be curious if this is coincidence of timing of doing a little better or if beta carotene really helping
  2. alex3619

    alex3619 Senior Member

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    Hi xrayspecs, evening primrose oil is something I have problems with. At one dose, while we are deficient in omega 6 fats (and we often are) then its fine. However many of us suddenly find we cannot tolerate it, or need smaller and smaller doses. The body converts these fats into inflammatory hormones. In cases of oxidative stress, low cortisol or other factors we don't yet understand, the body converts too much. Many with ME or CFS have this problem. If you suddenly develop an increase in flu-like symptoms, general muscle pain or headaches, but don't have a flu, I suggest you stop taking evening primrose oil for a couple of days to see if that is the cause. Bye, Alex
  3. determined

    determined Senior Member

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    Evening primrose helped me quite a bit with pollen and chemical sensitivities as well. I used to have to wear a mask outside at all times; this went on for years. After one month of six capsules of EPO, I didn't need it at all! And my chemical sensitivities diminished by ~25% or so.
  4. alex3619

    alex3619 Senior Member

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    Hi determined, a major part of salicylate sensitivity is a either a deficiency in the kinds of fat found in evening primrose oil (which is high in GLA, an omega-6 fat) or a problem with the enzymes. The enzymes are most affected by low glutathione and oxidative stress, but alcohol, magnesium etc have a part too. Treating oxidative stress may correct the problem on its own.

    One of our problems is we appear to use the omega-6 fats too fast. The low glutathione also blocks synthesis. So we make too little and use it too fast. By supplementing evening primrose oil you bypass the synthesis problem, but it does not correct the over-use problem. This is why it can cause problems at higher doses or for a longer duration. On the other hand these fats are essential to life - prolonged severe deficiency can be fatal.

    On tolerating fish oil, most fish oil sold is nearly 70% impurities, check the omega-3 fat content. It should be over 60%, or better 90%, if it is only about 30% you are using minimally purified fish oil. Many who take the low grade fish oil get gastrointestinal problems and this is more likely as you increase the dose.

    Bye
    Alex
  5. determined

    determined Senior Member

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    This is interesting, Alex. For a while I was following discussions of the use of guaifenesin for fibromyalgia pain. I started to avoid putting anything on my skin that could contain sals. Do you have a link or further information on the relationship between salicylate sensitivity and essential fatty acids?
  6. alex3619

    alex3619 Senior Member

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    Hi determined, I don't have any links handy. This material I have been studying since 1989, and was linked to a medical practitioner who was researching this for a decade, although my involvement was 1993 to 1994. Books have been written about this, but I am not happy with any of them. This is a long story and I might post it in parts. Maybe I should then turn it into a blog - I get asked these questions several times a year.

    Evening primrose oil supplies a fat called gamma linolenic acid, or GLA. Normally the linoleic acid, the shortest omega-6 fat, is converted to GLA by an enzyme called delta-6-desaturase, or d6d for short. It is then converted to DGLA by an enzyme called elongase. (The suffix -ase indicates an enzyme.) At this point some is diverted to make a class of hormones called series one prostaglandins, which are typically anti-inflammatory.

    The DGLA can go on to be converted to arachidonic acid, which is done by delta-5-desaturase, d5d. This fatty acid is stored in cells until needed, or at least that is what is supposed to happen.

    When the arachidonic acid is released it causes two things. It creates a class of hormones called eicosanoids. One group of these hormones is the series two prostaglandins, others are immune stimulators, typically inflammatory. The immune stimulators are useful for fighting off infection, while the prostaglandins are essential for life (as are the series one prostaglandins, which are also eicosanoids though from a slightly different synthesis path).

    The other thing arachidonic acid can do, if released into the cell near mitochondria, is create a massive oxidative burst - last I researched this the cause was unknown.

    Why the arachidonic acid is over-used in ME and CFS is a story for another post, as is the oxidative stress issue. For this post I will discuss salicylates.

    The enzymes d6d and d5d are inhibited by alcohol and oxidative stress. The strongest marker for low activity is low levels of reduced glutathione. Since ME and CFS are oxidative stress disorders we are prone to this. It means we cannot synthesize enough arachidonic acid, and many of us are deficient in it. Certain organ meats and other animal products contain a lot of arachidonic acid, but I will discuss that in another post - its ties in with over-utilization.

    Since we lack arachidonic acid (not all of us, not all the time, but typically) we are deficient in hormones essential for good health and immunity.

    Salicylates also target d5d and d6d, this was discovered in Australia in 1984. I hope to post references in a future post, I just wanted to get the facts out there initially. Since they target these enzymes, they decrease eicosanoid synthesis. So when you ingest salicylates, you are inhibiting enzymes needed to make many essential hormones, the eicosanoids. Eicosanoids typically last seconds to minutes - you need to keep making them. Sometimes you can react badly to salicylates, sometimes less so, if you have little arachidonic acid and poor synthesis to start with. This explains the variable nature of salicylate sensitivity. It is also dose dependent - a little salicylate does a little harm, a lot does a lot of harm if you are vulnerable.

    Now salicylates are in most plant foods. Quantity varies, some spices for example are very high in salicylates. Aspirin is a synthetic salicylate, and it actually destroys the enzyme needed to process arachidonic acid into hormones (cyclooxygenase, see http://en.wikipedia.org/wiki/Cyclooxygenase ). Other NSAIDs target this same molecule, but use a different mechanism. Cortisol prevents arachidonic acid being released from membranes to be used to make hormones, which is why it is anti-inflammatory.

    Traditional therapy for salicylate intolerance aims at avoidance in diet - exclusion diets. I don't agree with this, but that is again for another post.

    Evening primrose oil thus contains a precursor to two classes of eicosanoids. The series 1 prostaglandins are anti-inflammatory, and if these are what is primarily made you will feel better. The problem occurs if the fats go down the other pathway.

    There is another branch of eicosanoids made from omega-3 fats, and these include the series 3 prostaglandins. This is one of several reasons why fish oil is good for us usually.

    Bye
    Alex
  7. determined

    determined Senior Member

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    Thanks Alex, you are a prince!

    Some of the information is ringing some bells with me; I did at one time spend a fair amount of time researching EPO, but I don't believe I ever heard of a connection with the salicylates.

    We have an amazing illness - we have to understand pretty much everything in order to make any headway!
  8. alex3619

    alex3619 Senior Member

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    Hi determined, the more I kept learning about CFS, and later ME when I realized how deceptive the CFS term is, the more I realized that I still needed to know more. Its one reason I went back to uni to complete my biochem degree. I still don't know enough, and with age and worsening brain fog I am forgetting faster than I can learn.

    I have been running some searches looking for suitable material. I found one but it is biased because was it written by me, and so it is not a surprise I agree with it. :angel:

    http://www.mefreeforall.org/index.php?id=1035

    I still think I need to write some comprehensive blogs, almost nothing is being done with this kind of research that I have found (but I have not looked recently) that is not reinventing the wheel.

    Bye
    Alex
  9. ukme

    ukme Senior Member

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    I'm really interested in this and trying my best to understand it. So have I got this right - what you're saying in the article you wrote is not to take Vegepa because it contains omega 6? Rather, if you take anything take quality grade fish oil?

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