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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Help with NutrEval results

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by qwerty42, May 5, 2012.

  1. nanonug

    nanonug Senior Member

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    There is no need to defend yourself. I did not attack you.

    Well, I have been accused of asking too many questions. I have also been accused of asking no questions. I think I am going to change my nickname to "the-accused"! :D

    I stand by my original advice, which is to identify and eradicate all infections. Why? Well, a few people here on this board, myself included, believe that infections, whatever the source, are the cause of people's problems. See for example this thread: "CFS is a Bacterial Infection." The ultimate root cause could very well be immune system screw ups. That is something an infections disease specialist or immunologist should be able to ascertain, assuming you find one that actually cares.

    A long, long time ago, when I was a child, I had zero social skills. I am convinced that, were I a kid today, I would probably be diagnosed as Asperger's. Whatever meager social skills I have today, I had to pretty much "learn". So, your observation that my response was "pretty insensitive" is probably very much on the mark.
     
  2. qwerty42

    qwerty42

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    Thank you again Rich - that is a really comprehensive analysis to offer, especially for free.

    A lof of what you have said has been echo'ed by other people I've spoken to - including a natropathic doctor I'm working with.

    He also indicated that giving glutamine would be a mistake given how high my glutamic acid is and glycine would be the best option to boost gluthatione which could help a number of things. Would be interested to get your take on what dosage of glycine would be appropriate?

    He believes that my main problem now, which is preventing me from recovering, is the gut.Either some form of bacteria or a genralised leaky gut.

    Given that I've been taking 3-5g of supplemental tyrosine per day he says my dopamine levels look low still and my tyrsoine metabolism far too high. He has suggested there is a specific form of bacteria in the gut that can cause this high turn over without actual use.

    He has also said that although methylation looks like an issue, it is the not the main one and should not be worked on until any possible infection is cleared out, as it could make things worse if done beforehand.

    He has informed me my fish oil consumption is likely too high by virtue if the high EPA and wants to me add in hemp seed butter to try and rectify my fatty acid balance.

    I had been taking for the last 6 months of 2011, high dose Zinc to try and boost my libido - I feel this must be what has lowered my copper and have been taking steps to correct this since January.

    Its good to know that both yours and his analysis has plenty of cross over :)

    My take home points from both yours and his analysis seem to be:

    1) Attempt to heal the gut with a low sugar diet, probiotics and possibly something called colostrum?
    2) Keep on additional copper supplementation for now.
    3) When I have the energy low intensity <130bpm cardio on stationay bike in a sauna suit / go to an actual sauna
    4) Get Gluthatione back up as quickly as possible to help the immune system and also fight any bacterial infection.
    5) If no progress with gut consider a stool anaylsis.
    6) If still no progress having boosted Gluthatione and worked on gut and once toxins are cleared, use a methylation protocol.

    Thank you again.

    To the above poster, no offense, but could you keep your case to your own thread, I'd like to keep this as a sort of log of how I'm progressing.
     
  3. nanonug

    nanonug Senior Member

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    I would say that there is a very good chance that once you fix your gut, everything else will "miraculously" get fixed as well. This is exactly what happened in my case. After finding out that I was infected with Helicobacter pylori, I took a 14-day course of antibiotics to clear the infection. What happened, however, was that my previously diagnosed IBS and CFS disappeared while on antibiotics. After this experience, and based on info on a newly release book, "A New IBS Solution", I convinced my doctor to prescribed me high-dosage Xifaxan. This essentially eliminated both IBS and CFS symptoms for several months. Recently, I was diagnosed with an overgrowth of an opportunistic bacteria in my gut known as Morganella morganii (discovered using Metametrix GI Effects Complete Profile). There is a possibility this bacteria has been the causative agent of my misery for more than 20 years now.
     
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  4. qwerty42

    qwerty42

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    Thats really good news for you - hope you finally get it completely sorted.

    i had just never really considered the gut as I have no GI simptoms- have good, regular, non smelling stools, no gas etc

    Coincidentally enough I've just been prescribed a weeks course of standard Clarithromycin 500mg/day anti-biotics by my GP to see if my sinus congestion is bacterial.

    Might be a false hope but I'm wondering if this might help kill off some bacteria? I'm taking some probiotics away from when I'm dosing the anti-b's as well in the hope this might tip the balance in favour of good bacteria.

    The guy I've started working with over skype, Shawn, has a website here http://matrixhealthwell.com/ in case anyone is interested. He was on to me for over two hours and was talking non stop, he seems to really know his stuff, especially about the gut, so I'm hopeful of some progress.

    My nightmare has only been 18 months so far but has hit me hard losing a relationship, flat and career stalling over it. I can only imagine how hard 20+ years must be.

    I'd also like to add, although I'm not sure how this will go down on a CFS forum, that I feel the 'umbrella diagnosis' of CFS is possibly the least helpful thing to sufferers.

    Here in the UK, once you are diagnosed with CFS the only treatment option is GET and Anti-D's. Even when I've explained until I'm blue in the face exercise and pain is not something I have an aversion to with a history of a hard training 7 days a week and despite all this crap I'm not 'depressed' I'm still very motivated to find out whats wrong.

    Once diagnosed however, they will not pursue investigations into any of the things listed below.

    My research has only consisted of 18 months worth but in that time I've learnt that numerous endocrine changes, heavy metals, blood disorders, gut disorders, even some hard to diagnose cancers etc all cause 'fatigue'

    I honestly believe that the CFS label gives doctors an easy way out and is bordering on negligent. It gives a shield for malingerers to hide behind, with there being no official pathology, and unfairly throws the rest of us genuine sufferers into the same bracket.

    /rant over :)
     
    merylg likes this.
  5. richvank

    richvank Senior Member

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    ***Hi, Querty.

    Thank you again Rich - that is a really comprehensive analysis to offer, especially for free.

    ***You're welcome.

    A lof of what you have said has been echo'ed by other people I've spoken to - including a natropathic doctor I'm working with.

    ***It sounds as though you have a very smart naturopath! :thumbsup:

    He also indicated that giving glutamine would be a mistake given how high my glutamic acid is and glycine would be the best option to boost gluthatione which could help a number of things. Would be interested to get your take on what dosage of glycine would be appropriate?

    ***Supplementing glycine may help build your glutathione to some degree, but as I indicated, there are other things holding back your glutathione. After trying to help people build glutathione directly for about 5 years, I learned from autism researcher Jill James that lifting the methylation cycle partial block is the key to bringing glutathione back up. And in your case, the deficiencies in B2 (and maybe B6, also) are other important factors limiting flow through the transsulfuration pathway, and hence, limiting glutathione synthesis.

    He believes that my main problem now, which is preventing me from recovering, is the gut.Either some form of bacteria or a genralised leaky gut.

    ***I agree that your gut needs to be looked at. It's difficult to fix the methylation and glutathione if the gut is not up to par, because it's important to be able to absorb nutrients well and to be able to excrete toxins well. Also, if you do have leaky gut, that will be continuing to challenge the immune system, which produces inflammation and contributes to oxidative stress, thus putting a continuing demand on glutathione.

    Given that I've been taking 3-5g of supplemental tyrosine per day he says my dopamine levels look low still and my tyrsoine metabolism far too high. He has suggested there is a specific form of bacteria in the gut that can cause this high turn over without actual use.

    ***It's true that some gut bacteria are able to ferment tyrosine so that it is not absorbed into the body.

    He has also said that although methylation looks like an issue, it is the not the main one and should not be worked on until any possible infection is cleared out, as it could make things worse if done beforehand.

    ***I'm not sure on this point. The problem is that glutathione probably won't stay up unless the partial methylation cycle block has been cleared and there is good flow through the transsulfuration pathway. Glutathione is needed for the Th1 immune response, which is required to clear viral, intracellular bacteria, and fungal infections. Perhaps if the infections are effectively cleared out using various antimicrobials, that will lower the demand on glutathione and allow it to come up. I do think that you will need to build up the B vitamins, though. Getting back to the gut issues, it's possible that dysbiotic bacteria in the gut are intercepting the B vitamins that come in, also, and are preventing them from being absorbed by your body.

    ***I would say that optimizing the sequence of treatment of gut issues, other infections and the methylation cycle partial block is one of the big questions I have not yet resolved. Dr. de Meirleir very much emphasizes treating the gut first, and Dr. Amy Yasko does, also. There are a lot of interactions between the methylation-related metabolism and the gut function, so I suspect that these aspects really must be dealt with together. I would say that the few people who have reported full recovery after doing the methylation treatment had done other treatment prior to that, including antiviral treatment. So maybe you naturopath's view is correct here.

    He has informed me my fish oil consumption is likely too high by virtue if the high EPA and wants to me add in hemp seed butter to try and rectify my fatty acid balance.

    ***That sounds good. It should bring up your alpha-linoleic acid, which is low. Hemp oil has a good balance of omega-3 and omega-6 fatty acids.

    I had been taking for the last 6 months of 2011, high dose Zinc to try and boost my libido - I feel this must be what has lowered my copper and have been taking steps to correct this since January.

    ***O.K. That would explain your high zinc, and too much zinc will indeed lower copper.

    Its good to know that both yours and his analysis has plenty of cross over :)

    ***I'm pleased about that, too. :)

    My take home points from both yours and his analysis seem to be:

    1) Attempt to heal the gut with a low sugar diet, probiotics and possibly something called colostrum?

    ***That may do the job. If it doesn't, you may have to run a comprehensive stool test and use other antimicrobials, depending on what's in there.

    2) Keep on additional copper supplementation for now.

    ***I agree, but it's important not to go too high on copper, either. Generally if you supplement zinc and copper together with a mass ratio of ten to fifteen (zinc higher), they will stay in balance.

    3) When I have the energy low intensity <130bpm cardio on stationay bike in a sauna suit / go to an actual sauna

    ***I would caution against overexercise, because the elevated oxidative stress can damage the mitochondria. Sauna is O.K. for helping to remove toxins, but be sure to add back the essential minerals that are lost in perspiration, and wash off the skin soon, so that the toxins are not reabsorbed. Also, be sure to drink enough fluid to replace what is lost. People with ME/CFS tend to be hypovolemic, and sweating will tend to make this worse.

    4) Get Gluthatione back up as quickly as possible to help the immune system and also fight any bacterial infection.

    ***I agree very much with this. As I noted above, though, my experience is that it is necessary to lift the partial methylation cycle block and improve the flow through transsulfuration before glutathione will stay up.

    5) If no progress with gut consider a stool anaylsis.

    ***Amen!

    6) If still no progress having boosted Gluthatione and worked on gut and once toxins are cleared, use a methylation protocol.

    ***Again, in a case of ME/CFS, I don't think you will be able to get glutathione up, and make it stay up, unless you fix the methylation problem.

    Thank you again.

    ***You're welcome, and I wish you success.

    ***Best regards,

    ***Rich
     
    merylg likes this.
  6. qwerty42

    qwerty42

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    Brilliant thanks again Rich!

    Could I trouble you for one more take on something?

    I had the FACT Allergy testing part of the NutrEval Plus as well, which came back zero for every substance and a total IgE of 22 (<86).

    How accurate is this testing in your opinion? Because my ND is suggesting an elimination diet but I just can't see it being worth the hassle if I have zero IgE intolerances showing in the blood?
     
  7. richvank

    richvank Senior Member

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    Hi, querty.

    Food sensitivities are not all type 1 hypersensitivities (which involve IgE antibodies and histamine, and in many cases are lifelong).

    If a person has intestinal permeability ("leaky gut"), undigested protein fragments can leak from the gut to the blood and provoke an IgG immune response. These are common in ME/CFS. When the gut is gotten into better condition, these sensitivities go away. Your naturopath may be concerned about these IgG (type 2) food sensitivities. Some people use rotating diets to prevent type 2 sensitivities from building up, until they can repair the leaky gut situation.
    There are test panels available for IgG food sensitivities, such as the ELISA/ACT panels.

    Best regards,

    Rich
     
  8. qwerty42

    qwerty42

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    I've not logged on in some time and in all honesty have not been great. Not really any better although have had more tests to update and am waiting on 23andme results.

    Before I update though I've obviously come across the loss of Rich and I would like to echo the praise and thanks that people have given him. To offer the analysis of my results that he did was truly selfless and showed far more understanding and interest than any doctor I have seen here on the NHS in the UK.

    I have further researched methylation, his work and Amy Yasko's and it has that which has led me to get the 23andme test, which I'm hoping may be one of the final pieces in my puzzle.

    I don't think his loss can be overstated both to the people on this board (admittedly I've only been a member for a short while) and to the CFS/ME community as a whole. RIP- thoughts with your family.
     
  9. qwerty42

    qwerty42

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    As an update-

    I've had the Metametrix GI Effects stool test done and no real problems were found there; no chronic infections etc I do have some malabsorption of fats.

    I've had hair tissue mineral analysis and no real levels of toxic metals have been found.

    I've also had Lyme testing done that was negative. Can't really ever remember a rash or tick bite anyway.

    I've had up to date endocrine bloods done and they look OK. Testosterone still on the low side but everything else fine.

    Blood test 11/01/12
    SHBG 23 nmol/l (13 - 71)
    LH 7.60 iu/L
    FSH 7.50 iu/L (No range given)
    Total Testosterone 14.4 nmol/l (8.50 - 29.0)
    FT4 15 pmol/l (8 - 21pmol/l)
    FT3 4.8pmol/l (2.50 - 6.50pmol/l)
    TSH 1.80 mu/L (0.4 - 4.5)
    Oestradiol 20pmol/l (<80 in men)
    AM cortisol 670nmol/l (0-700)

    Reverse T3 0.36 pmol/ mL (0.15 - 0.54 - ideal less than 0.48)

    Sample1: 22.4 nmol/l (12-22) 97.0F 60BPM
    Sample2: 4.6 nmol/l (5-9) 98.2F 74 BPM
    Sample3: 6.9 nmol/l (3-7) 97.9F 68BPM (Had 30 minute nap immediately after this sample)
    Sample4: 2.3 nmol/l (1-3) 98.1F 80 BPM


    DHEA Mean: 0.75 nmol/l (0.40 - 1.47)
    DHEA : Cortisol Ratio: 2.07 (2-6)

    Total daily cortisol 36.2 (21-41 nmol/l)


    Notably my thyroid is fine, the RT3 has come down, which makes me wonder why I'm still experiencing low body temperature in addition to the rest of my symptoms.

    Current symptoms are:

    * Low mood. This is not been a problem for the whole of the 18 months really but now starting to get tearful randomly and think pretty dark thoughts. Wouldn't self harm but also feeling like I wouldn't be too bothered if I didn't wake up.

    * Agonizingly dry & photophobic right eye -specifically the right one, left seems ok.

    * Fatigue throughout the day and brain fog / difficulty concentrating. No exercise capacity.

    * Sinus congestion during the night. Wake up 3-30 -4 AM every night completely congested and incredibly thirsty. Pint of water eases the congestion.

    * Still no libido at all. Not even an inkling. No random erections, sporadic weak morning wood. Flaccid size is markedly reduced to the tune of less than half the usual size. Testicles also half the size they were before symptoms began 18 months ago.


    As stated above I'm due to have my 23andme results back in the next week or so. I'm really hoping that they can shed some light on things as I'm not sure there is much else left to test for. With a bit of luck my SNP wills reveal something glaringly obvious that is likely to be wrong with my methylation cycle and can be corrected.

    My complete lack of libido despite a relatively normal testosterone level is making me think it is a neurotransmitter issue, with them possibly not being made properly due to dysfunctional methylation.

    Symptoms have progressed to the point where I'm now off work, so in a way I'm glad theres not much left to test for.

    Don't really want to approach GP with the low mood as they're likely to try and pin all of the physical symptoms on it- even though I've had the other symptoms for 18 + months and I'm only starting to really struggle psychologically now.

    Also trying to fend off suggestions from family that they pay for the Lighting Process for me. That will only ever be a last resort - there has to be an organic cause for these symptoms IMO.

    Anyway thats my update - no great positives to report unfortunately as of yet.
     
  10. nanonug

    nanonug Senior Member

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    I am sorry to hear that.

    At this point, I am convinced that this approach is a dead end, I'm afraid...

    It's mostly good news which is a good thing.

    This is a symptom I am also privy to. I suspect it has something to do with HPA axis downregulation. In particular, I suspect it has something to do with production of norepinephrine.

    One of the things we have been discussing lately is the use of medications such as Strattera and Welbutrin XL as a way to increase both dopamine and norepinephrine. This should help with the depressive thoughts, among other things.

    This is one issue Wellbutrin XL would probably help.

    "Lighting Process" smells like bullcrap to me. Your instinct about organic causes is most probably right.

    If you have nothing better to do, have a look at Table 1 on this paper. See if you identify with some of the symptoms, particularly symptoms from different categories. No one has them all but having them spread thoughtout that table is, in my opinion, a good indicator.

    Good luck!
     
  11. Valentijn

    Valentijn Activity Level: 3

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    It's basically short-term very expensive CBT. The sort aimed at denying your symptoms and probably attributing them to another cause ("I don't have ME, I'm just catching the flu 24 hours after every time I over-exert myself", etc). I think there's a thread on here about them getting in trouble recently and having to change their website to get rid of some of their bullshit claims about curing diseases.

    ME/CFS is a physiological disease, and there are thousands of papers supporting it. The psychological theories supporting CBT and the Lightning Process are based on little more than the researchers repeating the same thing over and over again, with no objective support.

    In my opinion, it's pretty important to get your family to understand what ME/CFS really is. There are some threads about that on here as well, but simply giving them a copy of the International Consensus Criteria might be sufficient. You probably need their support (even if it's just emotional support), and you might lose that if you don't say anything and let them keep believing ME is a cognitive and behavioral problem that you can overcome with enough willpower.
     
  12. qwerty42

    qwerty42

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    Thank you both for the replies. My family are supportive, just confused. I would have to disagree though and say that I think CFS is a symptom and unfortunately used a catchall diagnosis. If I for instance have chronic fatigue caused by hormonal problems and you have chronic fatigue caused by nutrient deficiencies - is it helpful to either patient to have the same umbrella diagnosis.

    I do share your belief that for the majority there a physiological cause though.

    I've had a look at that table Nano - it is interesting but I can't seem to pick out many symptoms myself. A few for sure but I've never really had the physical joint pain and agony that a lot of people who post here seem to have.

    I'd considered Wellbutrin and that class of AD myself, but I've no chance of getting them here in the UK. Nice idea though :)

    I've just had a consultation and had some of my more important SNPs dug out from my 23andme results.I have to hope that it will lead somewhere.


    IgA rs1990760 +/+
    rs2187668 +/-
    rs9271366 +/+

    MTHFR C677T +/-
    MTHFR A1298C +/-

    CBS C699T +/-
    CBS A360G +/-

    VDR Taq +/-
    VDR Bsm +/-

    MAO A +

    ACAT1 02 +/-

    COMT V158M +/+
    COMT H62H +/+

    MTRR A66G +/+
    MTRR A664A +/-

    GSTP 1 +/-

    NAT 2 T341C (I144T) +/-
    NAT 2 G857A (G286E) +/-
    NAT 2 A803G (K268R) +/-


    Now I don't understand much of methylatiom (I'm learning but with brain fog) - I'm having a consult tomorrow with Shawn - but I do know that I have the MTHFR polymorphism and as such folic acid is not great for me. I've been taking 400mcg in my multivitamin and 400mcg in my Jarrow B Complex for the last year or more. Likely not to be the main problem but definitely cannot have helped me.
     
  13. qwerty42

    qwerty42

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    I've had my 23andme genetic results gone over and its clear I've got a few potential problems with methylation.

    Major ones being being heterozygous compound MTHFR mutation a heterozygous compound CBS mutation and homozygous compound COMT mutation.

    From what I understand:


    MTHFR enzyme deficiency stops the body from converting folic acid to folate effectively and thus causing a potential block in the methylation cycle; neurotransmitters aren't made properly, oxaditive stress isn't managed effectively and the immune system doesn't function well to name a few. It also means that the synthetic form of folate in multivitamins (folic acid) is not great for me and I've been taking 400mcg in a multivit and 400mcg in a b complex for the last year or more.

    Problems with CBS pathway stop the body from processing sulfur properly when methylation cycle is impacted and the version of the COMT mutation I've got means that I would generally only feel good with higher levels of dopamine than average and break dopamine and adrenaline very slowly - which might explain the bouts of anxiety when problems first began. Thats briefly how its been explained to me anyway.

    I'm now on a low sulfur diet for now (cut out onions, garlic, cruciferous veg, dairy) and been on a new supplement package for the last 5 days; few different things but major components are methylfolate, hydroxycobalamin, molybneum, yucca root, activated charcoal, Vit C. No changes as of yet but its early days.

    I'll be having my Testosterone levels checked next Monday, at which point I'll have been on 40mg Test Cyp x 2 per week for just over 3 1/2 weeks.

    Still no libido to report or any improvement in fatigue, mood or visual symptoms. Have got to imagine its going to come back high and confirm low T is not the real cause of my symptoms.

    I did go for a short 1.5 mile jog outside today - first form of exercise I've tried in ages but don't feel any more tired than usual for doing it and did feel good to do something.
     
  14. roxie60

    roxie60 Senior Member

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    We usually talk about the methylation cycle but not much is said about the impact of a dysfunctioning krebs cycle and its potential impact. I think I recall one thread discussing it but Iwonder how that cycle contributes to our condition?
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Most of us who have partial methylation blocks also have "breaks" in the Krebs Cycle. Rich has written about it. Try searching the forum using Google. I don't have time right now, but if you can't find it, let me know and I'll look in his articles--or maybe someone else can point you to it.

    Best,
    Sushi
     
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  16. caledonia

    caledonia

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    Yasko says to treat the SNPs in this order SHMT/ACAT, CBS, MTHFR, MTR/MTRR, BHMT, MAO A, SUOX, NOS, VDR.
    I'm more familiar with CBS because I have it, but if you supplement with later supplements before attending to CBS, they will go down the CBS drain instead of where they're supposed to. I'm not sure what happens if you skip over ACAT.
     
  17. qwerty42

    qwerty42

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    I found this quite useful to watch today -
     
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  18. roxie60

    roxie60 Senior Member

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    very good qwerty, as good if not better than Dr Ben's presentation on mthfr.
     
  19. qwerty42

    qwerty42

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    Am on day 8 of low sulfur diet and new supplement regime, no positive improvements to report as of yet but have started getting severe stomach pain. Wondering if this is just methylation starting up and to ride it out or if its likely to be one of the supplements?

    5MTHFR 1000mcg
    Hydroxy B12 1000mcg
    Molybdneum 500mcg
    Panthoneic acid 500mg x 2
    Yucca Root 500mg x 2
    Activated charcoal 500mg x 1
    P5P 25mg

    They're the new ones, added onto existing ones which have never caused problems of

    Vit D3 5000iu
    Probiotic 25 Billion
    Glutamine 10g
    Vit C x 2g
     
  20. paulb

    paulb

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    Hi Qwerty42, I'm new here and in a similar place to you. I can see your still on the finding path, I am sorry to read of Rich Van K's tragedy, and i wonder if you or are there any other physicians on here can look at my NutrEval results on my profile.......i'm pretty desperate right now :(

    Thanks.
     

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