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Rock bottom, please help

Discussion in 'General Symptoms' started by SwedishPete, Jun 13, 2012.

  1. adreno

    adreno 3% neanderthal

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    You can probably find a lot of those supplements on your list cheaper on iHerb. I would start with some basics:

    - A good multi, perhaps Thorne Basic Nutrients
    - NAC and Milk Thistle for the liver
    - ALA and Carnitine for mitochondria
    - Digestive enzymes; I like Now Super Enzymes as they also include ox bile and HCL.
    - Essential fatty acids: fish oil and phospholipids
    - SAM-e is good for methylation, if money is an issue try TMG instead

    Probiotics are hit-or-miss in my opinion. Oregano oil is pretty good at killing bugs. I'm not a fan of the recommended 5-HTP, but inositol and GABA is very safe.
    SwedishPete and jeffrez like this.
  2. Athene

    Athene Never give up

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    Yes, your doctor should prescribe this, but you must know 2 things.
    First, you have to insist he tests all 3 things, as many doctors think it is enough to test only TSH. They also sometimes test total T3, but you need to test Free T3 and Free T4.
    Second, insist on having the printout of the exact numbers, don't accept your doctor simply saying "It was in the normal range". Different labs use different ranges, and some use out-of-date ranges that consider dangerously low levels of thyroid hormones to be normal. Experts in thyroid problems have now realiesed that low thyroid is so common in old age that includnig elderly people in their testing ranges means the bottom end of the scale is well below a healthy level for a young person. If your T3 or T4 is in the bottom third of the range, you should investigate further.
    Good luck, definitely order this test!
    SwedishPete likes this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Reverse T3 is also a helpful one to get. In the States anyway, all these are easily available if your doctor orders them.

    Sushi
  4. sianrecovery

    sianrecovery Senior Member

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    Hi Pete
    I just wanted to say - welcome. And how much respect I have for the intelligent and commited way you are approaching this. Everything every one has replied strikes me as really helpful. For sure - look at gut issues ( I did and discovered an intestinal parasite - I havent been able to look at your results, but I assume they tested - but many parasites do not always show up), look at the methylation cycle, look at the endocrine system (completely with Athene on that one, I was slow to get to it), look at underlying bacterial and viral illness, look at mitochrondrial function - and environmental issues.I found poor mito function, a blood abnormality called KPU, a methlation defect, and a suspected Gilbert's type thing with my liver. And a blood borne protazoal infection. For me, this has been a complex, multicausual picture of which I am slowly assembling the pieces - theres been no silver bullet. Enviromental issues have been big for me and clearing up my environment - ie, removing as many toxins as I could from what I drank, ate, washed my clothes in, the personal care products I used, helped - I discovered I didnt get on with benzoates and nitrosamines for example - and they are in lots of shampoos, skin creams etc. I also found out I was mildly electrosensitive and changed my habits around using the computer and mobile. I didnt stop - I just reduced it and slept earthed (the book called Earthing by Clint Ober explains the reasoning).
    But remember - you dont have to do it all at once! One step at a time. The anxiety to about why I am ill has often actively contributed to my experience of illness by keeping me tense and hypevilgilant. I calm down with yoga and meditation.
    Trust your instincts, stay hopeful - you can do it xxxx
    SwedishPete likes this.
  5. richvank

    richvank Senior Member

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    ***Hi, Pete.

    I'd say that you have already gotten some good interpretation of your test results. There is a gut dysbiosis problem, and I agree that that needs to be addressed first. Your comprehensive stool analysis did not include antimicrobial sensitivity testing, so it's difficult to say which antimicrobials would be most helpful for knocking down the populations of the unfriendly bacteria. It's possible that you could overwhelm them using probiotics, but I think it's often true that the unhelpful bacteria must be knocked down first, before the friendly ones can be built up.

    Will do, antibiotics is not an option here???

    ***Antibiotics are an option, but if used, they should be narrowly targeted at the bacteria to be knocked down, not broad-spectrum, and antibiotic use for a few days should be alternated with many more days of probiotics, in the manner that Dr. de Meirleir uses them. Otherwise, antibiotics can make the dysbiosis worse. Many PWMEs have dysbiosis because of improper use of antibiotics in the first place, in my (unauthorized) opinion.:)

    I think that the reason you have IgG antibodies to several foods is that the gut dysbiosis has resulted in intestinal permeability ("leaky gut" syndrome), so if you can correct the dysbiosis, I think the food sensitivities will resolve. In the meantime, it is best not to eat the ones that you are sensitive to, and also to rotate your foods to avoid other sensitivities.

    This is def my theory as well, all these foods were eaten at the time of the testing accept for the paranuts.Im following the Paul chek food rotation at the moment.

    ***O.K.

    Your carbohydrate metabolism is not operating very well, judging by pyruvate being below the detection limit. This could be caused by a low-carb diet, poor absorption of carbs by the gut, or low magnesium.

    I have been trying to go as low on carbs as possible to batle the gut problems.

    ***O.K. That may explain it. Hopefully you will be able to fix the gut problems and then will be able to resume some carb intake.

    Normally, when carbs are not being supplied to the citric acid cycle at a normal rate, fatty acids are mobilized and the cells go into ketosis. However, in your case, this is not happening, based on beta hydroxybutyrate being below the detection limit. You have some omega oxidation of fatty acids going on, but not much. The fat stains on the stool test suggest that you may not be digesting or absorbing fats very well, perhaps because of the dysbiosis or because of bile insufficiency. It's not possible to say for sure what the cause is with the available data. You could also be low in carnitine or B2 or both.

    The first three citric acid cycle metabolites are low because not much in the way of carbs or fats are being fed to the cycle.

    Alpha ketoglutarate is below the detection limit. This is probably due to low B3, magnesium or manganese, as well as low B6 and/or B2. Succinate is normal, suggesting that you are feeding some branched-chain amino acid into the citric acid cycle. Fumarate is below the detection limit, perhaps due to B2 deficiency.

    Correct, I have been using EAA:)

    ***O.K.

    The high xanthurenate and kynurenate indicate low B6 or B2 or both. The high beta-hydroxyvalerate indicates a biotin deficiency.

    The high formiminoglutamate indicates low folate. Although methylmalonate is not high, I suspect that you have a functional B12 deficiency, based on the high formiminoglutamate and the low pyroglutamate (which indicates glutathione depletion). The methylmalonate marker can be masked by B-vitamin deficiencies.

    Your neurotransmitter metabolites are off-normal. It's difficult to be specific about them, but they are affected by B-vitamins, and you do have deficiencies in at least some of them.

    The high 8-hydroxy-2-dexyguanosine indicates oxidative stress that is damaging the DNA. This would be consistent with glutathione depletion.

    I have been taking these supps, very expensive, anything you have heard of or is it just bogus??? http://www.lyposphericnutrients.co.uk/default.aspx

    ***Generally speaking, liposomal supplements are better absorbed than ordinary oral supplements. It is important to pay attention to the cautions on the website about hemochromatosis, glucose-6-phosphate dehydrogenase, etc.

    Your detox system is working hard to try to take out toxins, but general disruption of the sulfur metabolism is hindering this. There is very low flow in the transsulfuration pathway, based on alpha-hydroxybutyrate being below the detection limit. Low B2 and/or B6 could be responsible.

    I suspect that your urea cycle is not operating very well, based on both fumarate and orotate being below the detection limit. If we had an amino acids panel, I could say more about that.

    Your cortisol and DHEA look pretty good.

    So generally speaking, I agree with what others have said. The gut issues need to be dealt with first. Then the deficiencies need to be corrected, particularly B-complex vitamins and essential minerals, but it would probably be a good idea to take a good multivitamin-multimineral to cover all the essential ones. You will need to consume some good quality protein to supply the necessary amino acids, and some fish oil to supply essential fatty acids to repair your cell membranes, which will have been damaged by the oxidative stress.

    If your methylation cycle and glutathione do not bounce back after these things are corrected, then I think you will need a methylation protocol that includes methylfolate and high-dose hydroxo or methyl B12, either sublingually or by injection.

    I recommend that you work with a physician for treatment.

    Best regards,

    Rich Hi Rich!

    I dont know how to ever thank you enough for such an amazing reply, but you will get plenty of good karma thats foo sho!

    Ive answered above on your coments in bold style. When you say a physician, you mean a regular doctor then??

    ***Yes. It might be a challenge to find one who is experienced with treating gut dysbiosis and the methylation cycle, but hopefully there are some there. Last October I spoke in Sweden as a guest of the IAOMT group there. Maybe someone in that group could refer you to a physician who is familiar with these things.

    Maybe I should print all this info and bring it??

    ***You could certainly try that.

    The liver problems are perhaps something I could take up with the healthcare??

    ***I'm not familiar with the "healthcare" in Sweden, but maybe so.

    Im real new to this, how bad are my tests compared to a normal person???

    ***I would say a little worse than the average PWME I've seen, but certainly not as bad as some.

    Can I still work out on the days I feel like I can or is this to stressing??

    ***I think you will be the best judge of what you can do. If you feel worse the next day, it was too much, and you will know that you should do less.

    Ive seen you suggest a multi in other threads which I have ordered, was planning on rotate that one with another good one perhaps.

    ***O.K. There are quite a few good multis available, but the one-pill-a-day types are not adequate.

    Also the carb factor, I read alot about carbs being the enemy, however I really do struggle without any carbs, I gain weight and get too tired If I live on meat, veggies and berries.

    ***Again, I think you will have to judge what works best for you. Normally, people do need some carbs to help maintain a good blood sugar level, which is important for the brain, especially. But in ME/CFS, carbs are not metabolized very well. Hopefully your gut and your methylation cycle function can be improved so that you will be able to have a more balanced diet.

    Are Quinoa, beans and wild rice unthinkable with my kind of gut problems??

    ***I wouldn't say that. Again, I think you will be the best judge of that by how you respond to them. But I do urge you to work on getting your gut bacteria closer to a normal situation.

    Thank you so much once again!! Theres a little hope again.

    ***You're welcome.

    Pete

    Ive tried hard

    ***I'm sure you have, and I hope it will pay off for you.

    ***Best regards,

    ***Rich
    SwedishPete likes this.
  6. SwedishPete

    SwedishPete

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    I will see what the good old doctor says:) will quote you Athene and hopefully she can help!

    Thanks!!

    Pete
  7. Athene

    Athene Never give up

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    Good luck, and please let us know how it goes!
  8. SwedishPete

    SwedishPete

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    Hi!! Thats an amazing reply my friend, cant thank you enough, although I have to admit that I am not as eager and motivated or methodical as it sounds, I gave up last year, the depression has been immense and my life is pretty much ruined, all bridges are burned, I do this more to understand how this could happen to me and understand my own body, I had built a life in the south of sweden when I got sick the first time, In hawaii and Australia the last time, now its all shattered and I have gone from a fitness model with tons of friends too living in solitude, mostly cause of my skin problems, which has made me unsocial. So cannot accept all the credit you provided there:) Although without a forum like this and the books I have read I would have given up completely.

    I guess my only option is to find a good doctor who understands me and can help me out! You must have been very methodical in your quest??

    Thanks a million!!

    Pete
  9. SwedishPete

    SwedishPete

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    Hey rich!!

    Thanks a million!! I answered above once more!! Thank you thank you!!!!!

    One question! Is there any chance to get a phone consultation with you????


    Regards Peter

    Thanks for another amazing reply, I hope I can send you a bottle of scotch someday!!
  10. sianrecovery

    sianrecovery Senior Member

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    I dont think your only option is to find a good doctor, though that would be nice, because there isnt anyone doc out there we know of with a definitive answer....I reckon your option is to do what you are doing, investigate, try stuff out, be kind to yourself, and stay hopeful...I havent been methodical at all, but I have to give myself credit, I have been persistent. It was a turning point for me (spiritually, if not physically) when I started viewing my symptoms as useful information from my body rather than afflictions. In your case, it sounds like your skin is trying to tell you something you may need to know.

    I completely identify on the loss and despair thing - the way I stay sane with that one is to try and be of some service in whatever way I can, and not to let fear possess me.

    And as for the people you've shed - they say the people that matter dont mind, and the people that mind dont matter...regard them as passengers you no longer needed xxxx
  11. richvank

    richvank Senior Member

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    Hi, Peter.

    Oxidative damage to the DNA is not a good thing, but there are repair enzymes that are able to fix most of it.

    Yes, I would say that after you have dealt with the intestinal issues, a methylation-type treatment that includes vitamin B12 and methylfolate should be helpful to you. I prefer hydroxocobalamin, taken sublingually or by injection. I don't know what brands are available in Sweden.

    Here is the contact person for the Swedish IAOMT chapter:
    Ulriak Aberg, MD, Stjarnvagen 29, Skovde, SE 54155, Sweden T: +46 500 434530

    This is the group that hosted the seminar I presented in Skovde last October. You can find a video of it here, and the slides are available by clicking on the blue print below the video:

    http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/${weburl}

    This video gives detailed information about ME/CFS, the glutathione depletion-methylation cycle block hypothesis, and treatment.

    I prefer to interact by email rather than by phone. If you want to email me, my address is richvank at aol dot com.

    Best regards,

    Rich
    SwedishPete likes this.
  12. SwedishPete

    SwedishPete

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    HI Rich!

    Another immensely big thank you!
    I have a doctors appointment for the 5th and hope I can take it from there!
    So I need to come prepared, will send her my tests and your replies in advance.

    I have to say my condition has gotten alot worse since I started using the supplements from the danish lab, I think its just to many.

    One question Rich, how do I explain to people whats wrong with me and what differs from a normal individual?? I get very little sympathy from work and relatives and friends.

    Thanks for the video, will look at it a couple of times!!

    Thank you so much!!
  13. nanonug

    nanonug Senior Member

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    I don't think I have sent this your way yet so here it goes:
    LEAKY GUT SYNDROMES: BREAKING THE VICIOUS CYCLE.
  14. richvank

    richvank Senior Member

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    Hi, Pete.

    I don't know how much background your relatives, friends and coworkers have in biochemistry, so you may have to use everyday language to explain to them what is going on with you. Maybe you could tell them that your digestive system has the wrong types of bacteria in it, and that has affected a basic part of your overall metabolism. Maybe you can get some other ideas about what to say from the video. I wish you success in explaining it to them, and in recovering your health.

    Best regards,

    Rich
  15. Helen

    Helen Senior Member

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    Hi Pete,

    I´m also living in Sweden. Two years ago I got to know about Rich and his work and also about PR. I was also happy to have the possibility to meet Rich, and to take part in his seminar in Sweden, october 2011. It has really changed my situation in a positive way.

    Thank you all, Rich in particular :) , for sharing facts and your personal experiences!

    Pete, if you send me an e-mail I might be able to give some guidance according to the Swedish health care system.

    Helen
    SwedishPete likes this.
  16. SwedishPete

    SwedishPete

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    Thanks Helen!!!

    Thats perfect, Im real happy for you:) That sounds like bingo for me as well:)

    Shoot you an email asap!!

    Thank for the reply

    Pete

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