Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Another(and better?) theory of of ME/CFIDS/FMS/MCS etc.

Discussion in 'General ME/CFS News' started by Medman99, Nov 4, 2010.

  1. Medman99

    Medman99

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    This is definitely worth investigating, imho:
    http://www.oneradionetwork.com/dr_s...n_chronic_&_environmental_illnesses_04.26.10/
    http://www.wellatlast.com/whatsnew.html

    "PORPHYRIA:The Ultimate Cause of Common, Chronic, & Environmental Illnesses

    With Breakthroughs in Diet, Supplements, and Energy Balancing

    This hidden problem is often “the last piece of the puzzle” for many chronic illnesses (see below), and/or environmental illnesses (MCS, EMFS, food reactivity).

    Poor tolerance for caffeine, alcohol, MSG, stress, meds, or supplements are possible indications of underlying porphyria.

    If you became very sick, and/or very reactive to foods, chemicals or EMF after mercury, pesticide, mold, or other toxic exposure, or after a Candida, parasite, viral, or bacterial problem, a worse state of (previously hidden) porphyria may have been induced.

    Porphyria is NOT a “rare disease,” rather 20% of Mankind may have a porphyria genetic defect that shows itself after stress, toxic exposure, drugs, or microorganism—Candida, parasites, bacteria, viruses—overgrowth.

    Once the porphyria is active, some people then become chronically ill, and/or very “allergic.” "
     
  2. Snow Leopard

    Snow Leopard Hibernating

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    I doubt a one-size fits all explanation will ever explain ME/CFS. Especially one with such a coloured history such as Porphyria.
     
  3. helsbells

    helsbells Senior Member

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    I tested negative
     
  4. Francelle

    Francelle Senior Member

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    I tested negative to Porphyria also.
     
  5. Medman99

    Medman99

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    One of the main points of the book/talk is that the standard blood/urine testing for porph is grossly inaccurate.
     
  6. ixchelkali

    ixchelkali Senior Member

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    While it may be that some people with porphyria have been misdiagnosed with CFS, I don't think it's a good fit for the majority of ME/CFS patients. There are too many symptoms that are characteristic of ME/CFS that aren't characteristic of porphyria, such as the usual ME/CFS immunological profile and post-exersional malaise. Plus, only a subset of ME/CFS patients display multiple chemical sensitivities. And if porphyria were THE answer to ME/CFS, you'd expect that those who are most severely ill would should some of the classic porphyria symptoms, such as extreme photosensitivity, which is not a common ME/CFS symptom. So while porphyria might be another disease that should be excluded before ME/CFS is diagnosed, in my opinion it's not going to be the answer for most of us.
     
  7. Medman99

    Medman99

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    Extreme photosensitivity is a symptom of only one of the eight porphyrias- variegate porphyria. If you are not making heme correctly, then your mitochondria won't work properly-aka, you will experience profound fatigue. Also, your cytochromes(more heme based proteins) will not detoxify your system properly. All hormones, food, chemicals must be processed by the cytochromes. If they are not working correctly, you would have a myriad of symptoms including hypoglycemia, thyroid and adrenal issues, fatigue, various biochemical disturbances,etc. Does any of this sound familiar? The precursor molecules, which are toxic, if not metabolized ultimately in the heme enzyme cascade are know to be toxic neurostimulants. This would explain the "wired and tired" feelings that most of us have. I would suggest thoroughly investigating this before poo pooing it so readily.
     
  8. xrayspex

    xrayspex Senior Member

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    medman, its interesting you bring this up as it is one of the conclusions I self diagnosed as a possibility earlier this year in myself, i have been learning a lot at these boards the last couple of years and porphyria as you say in above post explained a lot of my issues as i have extreme MCS and sun sensitivity, even bright lights inside bother me. I dont wear shades in doors though not that extreme.
    I had wondered about it and had the name of a couple labs where it was really expensive but considered getting genetic testing to rule it out but when i researched it more I didnt see a solution really, no cure so let it go, but still wonder. Thing is I am xmrv+ too but I imagine it doesnt have to be mutually exclusive.

    But at the time I got disabled there were weird events that conspired together and in retrospect I realized that I had been forcing self out in the sun a lot that summer in futile attempt to get tan with my bronze best friend and I am irish white, and I was dieting intensely caloric restriction and then i was taking an antibiotic an ssri and zantac and the combo was hurting me but I didnt heed because thought doctor knew better than ended up needing a surgery and I think the anesthesia was the straw that broke the camels back but it could have been a chemical poisoning, I can't remember what all the pieces of the puzzle were but there were a few risk factors that i was engaging in that in retrospect I realized could have resulted in porphyria esp since I seemed to have a genetic vulnerablilty of cytochrome p450 issue as Cheney would say.

    How do you think it would help to know, I didnt see any magic bullets for it, I suppose if one was the type that was a vampire with the sun than total avoidance of sun would be good, wonder if that ties in with marshall protocol, if overlap of viral and porphyria etc

    I remembered a couple of other porphyric type incidents, I had abdominal pain attacks dx as g.b. attacks even though I was super fit, and skin issues started, weird break outs esp if in sun.
    more info, sounds like trying heme would be interesting, not sure how easy that would be to accomplish, I remember reading about this is also why I decided not to fight my sugar cravings cus maybe its self medication if have this, dont do well on low carb diets, always get sick if low carb

    http://www.merck.com/mmpe/sec12/ch155/ch155b.html#BGBGEAHI
     
  9. helsbells

    helsbells Senior Member

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    Me too Xray! Told over the years that low carb is good but always feel much better on carbs myself - well i say better I actually mean marginally more alive :rolleyes:but you get my meaning!
     
  10. ukxmrv

    ukxmrv Senior Member

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    I've had porphyria testing and was negative. It can't explain the outbreaks of ME. Could be of use to people with an onset of the symptoms described of course but wasn't how my ME came about or felt like.

    XMRV+
     
  11. camas

    camas Senior Member

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    While my regular doctor was on a sabbatical about 12 years ago, I was temporarily seeing another doc. She had a lot of MCS patients and was interesting in the theory of a doctor at Oregon Health Sciences University that those of us with MCS were mildly porphyric. So she had me send samples off to the Mayo Clinic, and I tested mildly positive for coproporphyria. When my regular doctor returned he dismissed it as nonsense, and the poor doctor at OHSU lost his job over his theory and was practically run out of town.

    I was never sure what to make of it all. I don't believe it's the cause of my CFS, but probably a result of it. I will say this though. I used to have the worst reactions to cigarette smoke, perfume, etc. to the point my diaphragm would paralyze and I could barely breath. After this diagnosis the first time I got exposed to a bit of cigarette smoke walking into the grocery store, I quickly bought a candy bar and hoped for the best, and damned if it didn't stop the reaction dead in its tracks. My doctor was incredulous, but it worked and continues to work.

    I always carry sugar cubes in my purse now and, when I get an exposure, eat them one by one until I'm feeling better. It usually doesn't take many -- five or six at most. It's saved me from a lot of suffering and days of being completely down just because I had the bad luck of breathing in a little secondhand smoke.
     
  12. xrayspex

    xrayspex Senior Member

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    well this is really interesting about the sugar.
    yea, i like the free pass idea to eat suger :)

    5 years ago I agreed to take some photos in the dead of summer it was in 90s and humid and sunny and I knew it was a suicide mission but i did it for a couple hours and got really bad off during it but didnt want to admit it to others but i went and got a sugary shake at concession and it kept me going until got home and then was flared up for a week. NEVER Again!
     
  13. camas

    camas Senior Member

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    That's why I just keep boring old sugar cubes around. They aren't too palatable. I can't think of any real candy that would survive more than a day in my house or purse. :D

    I should probably have added that consuming simple sugar is what porphyrics do the minute they feel an attack coming on. If they are too ill to eat sugar (nausea, vomiting, etc), they go to the emergency room where they usually have a standing order for an IV of glucose.
     
  14. Medman99

    Medman99

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    One of the main points of Dr Rochlitz's work is that the mainstream urine/blood testing is grossly inadequate. You have to get DNA testing to be certain. I spoke with him the other day about ME. He seems to think that most with "ME" are probably undiagnosed porphs who came into contact with the cocksackie virus, which in turn aggravates their porph, ie, makes them gravely ill. You have to ask yourself the question, why do some people have such awful reactions to viral infection, like XMRV, for instance and others don't? This would explain it, imho. IE, there is something "genetically different" about certain individuals or else everyone who tests positive for these viral infections (XMRV, EBV, Cocksackie) would be seriously ill. All persons who come into contact with mold, virii, mycobacteria,lyme, etc. should be quite sick if it the infectious agent itself causing the problems. But, these agents do not make all who come into contact with them deathly sick like most me/cfs sufferers.
     
  15. dipic

    dipic Senior Member

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    (my bold) Are you referring to those who test positive to XMRV but are otherwise healthy individuals (what was it, the roughly 4% figure the WPI found)? Or are you referring to range in severity with those who test positive to XMRV (i.e. where some may be able to continue working in some compacity while others are completely bedridden)?

    I've displayed very mild symptoms of ME/CFS for as long as I can remember (so since at least early adolescence.) I came down with full blown "ME/CFS" after a bout of mono in early 2007. I tested positive for XMRV or the summer. Presumably I have carried XMRV for many, many years with with only very mild symptoms displayed (which, gradually got worse over a long period of time.) To me, it would make sense that a combination of mono and other stressors at the time overwhelmed my immune system and allowed the XMRV to "take over." If my hypothesis is correct, mono was my "trigger." These "triggers" seem to be extremely common with people who have ME/CFS. Many people went years living extremely active lives and then suddenly they were hit with a mono-like virus, involved in some sort of physical and/or emotional trauma, had surgery, etc. and came down with ME/CFS.

    I wouldn't, and am certainly not excluding the possibility of some sort of genetic disposition or "difference" as you put it, in at least some of those who have this illness. In fact, I think it's a pretty good possibility. However, it's also quite likely that if you were referring to my former suggestion (that there are many healthy individuals with an XMRV infection), it's quite possible that they just haven't met their "trigger" and/or their immune systems are strong enough to hold back the virus.

    Also, I think you'll agree that it's far too premature to lump XMRV in with EBV and cocksackie, if that's what you're doing (and even then... even if XMRV isn't found to cause disease and is simply another "passenger" virus, which seems highly unlikely...) I guess I'm just a little confused by the line "everyone who tests positive for these viral infections (XMRV, EBV, Cocksackie) would be seriously ill." Do you mean all of the above, or XMRV or EBV or Cocksackie, etc.? Then again, perhaps my fried brain is completely missing or misunderstanding the points you're trying to make (in which case I apologize and should probably refrain from future posting. :Retro wink:)
     
  16. Medman99

    Medman99

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    Yes, I'm going to go out on a limb and hypothesize that XMRV is not the smoking gun we are all desperately searching for. Hopefully I am proven to be wrong on this, but I doubt that will happen. In the early days of cfs, it was thought that EBV was the smoking gun, then HHV, etc. I think most, if not all of humanity is exposed to these pathogens. Again, why is it that only certain people get so ill from them? The answer lies within our bodies, imho, not from some outside "agent". An insult to the human body is an insult, is an insult. Whether it be mold toxins, viruses, mercury, pesticides, etc. Again, I am hypothesizing as a sufferer and a scientist. I would love to be proven wrong!
     
  17. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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    I don't think you're going out on a limb at all. I think your 100% correct. Even Dan Peterson, one of the main researchers of the WPI team, has gone on record numerous times, that he believes it's very likely that XMRV is merely an opurtunistic passenger that has found a home in individuals that have an immune system that comprimised by another, broader condition. This is something that an amazing amount of people on this forum completely ignore as they expound on XMRV as if it was 100% certain that it is the cause of their condition. It's not.
     
  18. roma

    roma

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    JPV everyone can think whatever they want, but the other two know to man retrovirus do cause problems and cause a compromised immune system, it's already been proved that XMRV causes problems, how many people here have had many tests done only to find that they have very very low levels of natural killer cells this would be because the virus infect cells including t cells which makes you have a compromised system and this is why CFS patients pick up many virus and bacteria because the immune system is so busy trying to fight XMRV that you get infected with whatever else you come in contact with, this would also explain why some people get CFS symptoms suddenly specially when the are younger because as they grow older they pick up more and more crap along which eventually takes a toll on your immune system, get it in your head people XMRV is not a passenger virus it becomes part of your DNA, once you have it they only way to get rid of it is by you dying there's is no cure for a virus but there will be treatment for it hopefully very soon, as we have seen it with HIV + people the vast majority of them can have very normal lives and live a close to normal life span, the good news about XMRV is that it does not progress as fast as hiv which means it could be much easier to treat with way less toxic meds then hiv meds, we have seen a lot of people in this forum that have had me/cfs since the early 80's and are still around us and never had any type of treatment except for vitamins, how many people that got infected with hiv in the early 80's are still around? probably not too many, so as we can see this virus may be a lot easier to treat...
    I know i can't prove to you that XMRV in fact does cause problems but i don't need a science paper to tell me something i already know, before i came to this forum i was at thebody.com and poz.com because i thought i have gotten HIV after a risky encounter and started to get many symptoms and health problems which i still have today, anyways many people kept getting tested for hiv for many months thinking they had gotten some werid new strain of HIV because they kept testing negative for it and it turns out a lot of them already tested positive for XMRV which is what they got by having unprotected sex, the reason they kept testing for HIV is because all of them got sick afetr risky encounters, all of them got many OI's and other health problems like candida,swollen tongue with teeth marks around it,white thrush, cognitive problems, skins rashes, IBS problems, urinary tract infections, fatigue,throat infections abdominal pain, lower back pain, confusion, brain fog, joint and muscle pain and many other does this sound familiar? none of these people including me had any history of having any major health problems but after there risky encounters all of them got sick and are still sick this day and at least i have talked to 16 people from this other forums that tested positive for xmrv already,, do you really think all this is just a coincidence? is it also a coincidence that one couple starts out by having one member sick and then the other one becomes sick as well maybe months or years later? is it a coincidence too that many mothers with CFS have children who develop some sort of unkown disease later in life? is it a coincidence too that many people who are still struggling now a days with CFS have a family history of early deaths and weirdd types of cancers or have a history of having a father or a motther who was always sick..... i know all this sounds too harsh and i know that there is gonna be cases of CFS that test XMRV - but for those who do test + most then likely your health problems are due to this damn bug...i know also there's going to be people that asks why is there xmrv+ people that are healthy there's an easy explanation for that everybody and every immune system is different as we have seen also with HIV there's people that get it and develop full blown aids within a couple of years and there's other who get it and don't show any symptoms for two decades, i personally know someone who is HIV+ going on to her 18th year with it and she is healthier than i am and she's not on meds..
     
  19. lancelot

    lancelot Senior Member

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    Right now, most people believe that the positive WPI/NCI/CC + NIH/FDA/Harvard studies > negative CDC + other studies. I seek the truth whether that be a XMRV/MLV cause or not. My first and only priority is to find the cause based on facts and to get well from CFS/ME. I am not a WPI nuthugger nor a Weasel denier.

    The lipkin study will finally settle this debate for me. The results of this study will solidify only one side of this debate. If it's a negative study for XMRV/MLV, i am prepared to abandon that as the cause. If it's a positive study for XMRV/MLV, will your personal fear of viruses cause you to deny the truth?
     
  20. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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    I don't have a fear of viruses so much as I get easily annoyed at those jumping on such a bandwagon and accepting it as fact with little or no proof. Once there is more credible evidence, either way, I will be to commit to that point of view. In the meantime I remain skeptical. I'll tell you that Mikovits' initial switch, with little credible explanation, from a 67% finding to 90+% one was a huge red flag for me.
     

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