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What I discovered so far

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by TheChosenOne, Aug 12, 2015.

  1. TheChosenOne

    TheChosenOne Senior Member

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    This post is a summary of what I've discovered so far. Since I'll post this on another forum and because this post will be used to explain stuff to people that have no background whatshowever, it will contain things that are obvious to most people on this forum. The end on this post will contain questions, so you don't really have to go through the whole post if you don't want to.
    This post is rather long (sorry for that, I don't like reading either), but it's kind of important to go over it all since it is a coherent story. The most important info is at the end of this post. I've tried to be complete as possible.

    When I was a kid, I was rather healthy, strong and bright. I was somewhat more anxious than other kids. I hated big crowds and I was what other people might describe as 'silent'. In the 3rd grade, I started to get quite serious dust mite allergies. I remember that the floor of our classroom was covered with mats. Especially during the winter time, when the heating was enabled, my allergies would flare up in a somewhat dramatical way. There were times that I wasn't able to see the board because my eyes were covered in tears and I had to use 7-8 handkerchiefs which were all wet at the end of the day. I got some relief from homeopathic drops and saline, but it only softened the symptoms.
    I had swollen lymph nodes beneath my jaw and at the back of my head, which I thought was related to allergies.
    Later in primary school, I started to get nausious quite frequently, especially in busses and in cars but also just on hotter days. I also had a lot of cold hands and feet. This usually appeared together with cold sweats (as in feeling cold but sweating at the same time).
    Anyway, in the last years of primary school and the first years of high school, I started to get skinny to the point that people wondered whether I ate enough. I became chronically underweight and I actually started to feel ill at that time. For some reason I started to develop some form of ADD which appeared and disappeared from time to time, but not serious enough to be a big problem. I remember that I became very irritated when I was bored, which was basically most of the time. I thought a lot of courses went way too slow or were a lot of bullshit and braindead nonsense. During my whole childhood, I had a minor form of Athlete's foot.

    Another symptom I had and concerned me a bit were heart problems. Those were threefold. The first type was pain that appears on the left side of my chest and it spreads until my left ring finger. This was the type that occured most frequently, but wasn't all that problematic. I think the scientific term is 'angina'. The second type is a racing heart (tachycardia). This means a very fast heart beat (110-130) for a very long time (like a few hours) without doing any excercise. This is very tiring. When this happens, I usually have to lay or sit down. There is nothing that would make this symptom go away other than just resting. It usually takes a few hours, sometimes half a day, before my heart rate would return to normal. The last time this happened was half a year ago. I've taken a screenshot from my measurements back then. The first measurement was 130 bpm at 17h. One hour later it slowed down to 117 bpm and stay stable for 6 hours. In the middle of that night it was 105 bpm. My normal heart rate is 68 bpm.

    [​IMG]

    The third type is actually the most disturbing. It is an irregular heart rate. As far as I remember, I only had this twice. The way I can describe this is an asynchronous heart beat with occasional skips.
    Some people suggested to have this investigated, but meh.

    Thinking became a problem because of a symptom that most call 'brain fog'. The best way to describe this is 'having a hangover without the pain'. This might explain a bit more about this symptom. There is actually a post that has examples of typical brain fog situations.
    During the middle to later years of high school, my weight got better (still not high enough), but other problems started to appear. These included intestinal cramps during he day, together with sometimes serious bloating. The bloating was really bad in the sense that walking or running would become painful and definitely not pleasant. Sometimes it was possible to hear the air in my bowels by just pushing on them. I also got weird pressure headaches and symptoms that could be related to as 'diabetes'. High cravings for sugar, feeling bad before a meal or after physical excercises, trembling and dizziness. An example of trembling:


    Most of these symptoms got much better after a meal, but most of them didn't disappear completely. Acne appeared and disappeard (after I stopped eating hydrogenated fats) and I was also tired during the day, although I always slept 8 hours a day. As a result I also looked very worn out. At some point someone made the remark that "I had a serious party last night." even when this wasn't true at all. I never went out during high school because I was tired most of the time. My liver would also hurt, like it wasn't able to keep up with detoxification.

    I've never complained about anything and I probably never will, but this kind of attitude didn't fix all these problems. I thought these things would go away automatically. Obviously this wasn't the case. It took me until the end of high school, before I started to see some doctors. Mainly because of digestive issues. The first doctor thought I was making everything up and thought it was 'all in my head'. The second one thought my bowels were 'stressed out' and prescribed me something that would relax them. I knew that this was nonsense and I threw away the prescription. He also told me that trembling was 'in my nature' and that 'there was nothing that could be done about it'. He prescribed some vitamins for my fatigue. I didn't pick them up either. The third doctor was a homeopath which thought I had 'adrenal fatigue' (which is actually a possibility) and gave me some something that didn't really do anything. The fourth doctor was an osteopath. He thought that my liver was 'overworked' and gave me some brewage that he probably made himself. I think it contained things like artichokes and other herbs (like swedish bitters). He also found out that I supposedly had a bunch of allergies, especially cows milk, gluten and certain types of meat. Allergies would make a lot of sense. Mainly because my bowels were very irritated as in IBS. Fast food would give me terrible symptoms. A regular western diet was very bad for me, but on the other hand it is very bad for everyone. Avoiding gluten and milk improved my symptoms somewhat but not all that much. The fifth doctor was an internist (a doctor who is specialised in internal diseases). This was in 2012. She did a blood test for a lot of stuff and she discovered two things. First of all, my vitamin D3 levels were too low 19.6 ng/ml [40-100] and the IgG marker for candida was out of range 142 mgA/l [< 120]. There were undigested muscle fibers and fats in my stools.
    The skin test for allergies pointed out allergies for E210-E219 preservatives.
    Finally, the first real discovery.

    Candida is a fungus that naturally can be found in everyone's digestive tract. In some individuals, this infestation goes out of control. Mainly because their immune system can't keep the infestation under control or because their intestinal environment allows the fungus to become pathological (the lack of probiotics). Most people who suffer from a candida infestation have a history of antibiotic use.
    Candida leads to cramps, intestinal malabsorption, diarrea and other digestive issues. It makes the walls of the intestines permiable which results in small food particles that enter the bloodstream. This is why it is also called 'leaky gut syndrome'. The small food particles that enter the bloodstream can trigger an allergic reaction which can disappear and appear again over time. This can make treating candida very difficult.
    Whenever the infestation goes 'out of control', the immune system intervenes and starts attacking the candida strains. Whenever candida dies, about 79 amount of different toxins get released which have to be cleaned up. Some of these chemicals cause dizziness (ethanol is one of them), others cause brain fog (acetaldehyde). All these symtpoms can have huge implications.


    Allopatic medicine doesn't recognize candida in healthy individuals, only individuals that have a serious condition like aids or undergo chemotherapy. Candida occured in one of the episodes of House M.D. as a secondary disease.
    We live in a society where people assume that everyone is healthy. And if you are not you can just go to the doctor, they will fix your problem right? Allopatic medicine has no idea how to cure chronic conditions, like depression, ADD, chronic fatigue, ibs, high cholesterol, ... because the solution to these diseases can not be found in just one wonder pill. All they do is symptom management.
    I started with diflucan which is an antifungal. This didn't do anything. Then I got some other antifungals (caprylic acid) and digestive enzymes and I had to change my diet. When I did that, I noticably got better. A lot of symptoms that I related to as 'diabetes' improved in a serious way or even disappeared. Even my headaches got better. It happened a lot that when I took the train or the bike, I had to sit down for a while to recover, sometimes even up to half an hour. I felt like a 70 year old. This symptom disappeared too. The most noticable symptom that was still present was sugar addiction.
    I followed her advice for about a year. Most symptoms stayed the same during that peroid, but never completely disappeard. Everytime I ate something I should not eat, I noticed serious die-off. This was most noticable by flu like symptoms/very hot face. This is why I started to do some research on the internet. I found a forum called 'The Candida Forum'. One of their users had a 'protocol' which was very popular amongst their members. It included a wide range of antifungals, probiotics and a very strict diet. It started with a 'cleanse' or a period of detox. I decided to commit completely to this protocol. The period of detox (of a few days) had a very strict period of only vegetables. I had to cut out all sources of sugar and protein. It also demanded to take some supplements for liver support (like molybdenum and milk thistle herb), as well as the use of bentonite clay to clean out your bowels. After this period, small amounts of eggs and later chicken may be added. In the meantime, I found out that I had a serious deficiency in stomach acid. Stomach acid is necessary to break down proteins. If the proteins are not broken down in a correct fasion, the food you eat and especially the sugars start to yeast in your system. This leads to massive bloating. I had to add 13 grams of hydrochloric acid to fix this. You have to realize that HCl comes in capsules of 1 gram. The bottle adviced to take only 1 capsule per meal. The bloating disappeared.
    The diet demonized fruits because it was a source of sugar. The beginning of this diet was very hard, because it lead to serious headaches and serious fatigue. It took me serveral months to recover from this to the extend that I failed all my exams in that period. This meant that I had to do them all over and I lost 1 year of college.
    Later in the diet I added some probiotics in pill form as well as kefir which I made myself. I used organic goats milk for this. Milk isn't good for people with digestive issues, but I felt that it really helped to some extend. It would be much better to use raw milk, but we can't have that, because the government has to protect us, right? The probiotics in pill form did absolutely nothing. The antifungals included caprylic acid, oregano oil, red thyme, coconut oil, SF277, ... I never used pharmaceutical grade antifungals like nystatin or diflucan during this protocol because candida can adapt to these antifungals. Later on, I added bouilardii which is a fungal strain that competes with candida and is considered to be a probiotic. This helped me a lot.
    I followed the strict diet for quite some time but it didn't take long before I realized that it would not solve the problem. I actually got really far in the diet without cheating a lot. The treatment for a chronic candida infestation is difficult because there are many factors that have to be considered and it may have many causes. As long as the cause of the infestation is not addressed, the infestation will reappear, no matter how many antifungals and probiotics you use.
    I was desperate. I had no more ideas. There were no doctors that could help me. I feared that this problem would never be solved and I had to change my diet permanently. Then I found a topic on the candida forum called This is a MUST read for everyone with CANDIDA.. It stated that most people with a candida infestation had mercury poisoning. The author of the post claimed to have cured himself this way.
    He refered to Amalgam Illness, diagnosis and treatment, a book of Andrew Cutler who has a PhD in chemistry. I immediately read his book. The similarities of the symptoms that are described with my own symptoms were pretty accurate.
    I agree with 90% of these symptoms. Symptoms that I had and that are rather specific for mercury poisoning are light sensitivity, dry ankles, racing heart (tachycardia) or hart pain (angina), weight loss, unusually late puberty (I was 16), metallic taste (only as a child) and nightmares (Especially as a child. As a matter of fact, I did sleep with a blanket above my head.).
    By the way, the rethoric in this book is amazing.
    Cutler included a diagnostic checklist for mercury intoxication. From the 58 items, I was able to verify 27. 13 of them were positive, 14 negative which is indicative for mercury intoxication.
    Furthermore, I've always had a weird 'burning' sensation in my head which I could not place. I thought it was related to headaches. One day this symptom was easily distinctable from regular headaches. I googled 'burning brain' and this is the first website I found. This couldn't be a coincidence anymore.
    I wasn't satisfied with the checklist and all the matching symptoms. I had to be sure and ordered a hair test. I read his other book, Hair Test Interpretation: Finding Hidden Toxicities to understand how to read a hair test. These are the results of the hiar test:

    [​IMG]
    [​IMG]

    It's not all that difficult to read a hair test, but you have to know what you have to look for. There are two things that can indicate mercury intoxication, high mercury levels or an unlikely mineral result. If a hair test is statistically unlikely, it may indicate 'deranged mineral transport' caused by mercury poisoning. I've given a mathematical explanation on my blog. Either way, having 6 bars or less to one side has a statistical probability of 2.6%. This means that 1 in 40 will have this kind of result at random. In conclusion, the results of the hair test are 'highly suspicious'. Because there is suspicion of deranged mineral transport, the results of the toxic metals are not reliable.
    Shortly after that, I started chelation. Chelation involves the use of chemical compounds that have the ability to remove heavy metals. For mercury this is DMPS, DMSA or ALA. Alpha Lipoic Acid is a natural antioxidant that can cross the blood-brain barrier and is the most important chelator. DMSA can also chelate lead. Chelators have a certain half life. This means that the amount of this product halves after every x units of time. Chelators have to be taken frequently, otherwise the mercury gets redistributed without being moved out of your system. The half life of DMPS is 6 hours, for DMSA this is 4 hours and for ALA this is 3 hours. This means that DMPS have to be taken every 6 hours, ALA every 3 hours. Also at night.
    Before engaging in chelation, one must remove all amalgam fillings because they contain 50% mercury. Especially chelating with ALA while having amalgams can make a patient worse.
    According to Cutler, amalgams are the source of most mercury problems. There is a lot of debate about wether this is the case. There are a few studies that confirm that amalgam fillings significantly increase the level of mercury in saliva and feces, significantly impair kidney function in sheep and increase the amount of mercury in plasma and urine a 5 fold for users of nicotine gum. Other sources of mercury include fish. The mercury concentrations in fish increase about 4% per year caused by coal power plants, especially in big fish like tuna. Another source of mercury are vaccines.
    There is no real safe limit for mercury. The EPA has determined a 'safe limit' of 0.1 micrograms of mercury per kilogram of body weight per day, which is easily exceeded by either source.
    Norway, Sweden, Denmark and Germany have banned or limited the use of amalgams because it is unclear whether they are safe.

    Before I knew anything about mercury intoxication, my dentist automatically removed all amalgam fillings and replaced it with white composite fillings. I know that they contain BPAs, but it's better than having a neurotoxin in my mouth right? Either way, I don't have them anymore which is a good thing. I don't know whether they are removed in a 'safe' way. I guess not, but whatever.

    So far, I've done 20 chelation rounds. I started off with DMPS only and then incorporated ALA. I substituted DMPS with DMSA once I ran out of it DMPS. I've included several breaks in between chelation rounds. There is a gap at the end of 2014 and another one in March 2015. The main reason for these gaps is the fact that chelation can be kind of heavy. It is true that chelating with DMPS is less intruding that chelating with DMSA. I'd really recommend DMPS over DMSA if you have the money available to use this.
    Between 1 December and 9 December I broke my arm and they immediately gave me a tetanus vaccine. I was under the assumption that most of the vaccines didn't contain mercury anymore. Apparently, I was wrong. The night after I got the vaccine was horrible. I was nauseated, dizzy, had a headache, felt very 'weird' and couldn't sleep. I also had a fever, although I had almost no pain.
    After I was released from the hospital, I immediately restarted chelation with DMPS. The fever continued for 2 more chelation rounds. I didn't have a fever in between those rounds.
    During chelation, I take zinc (50 mg), vitamin C (as ascorbic acid) (1-2 g), a B50 complex, vitamin E (100 IU) and selenium (200 mcg).
    A lot of symptoms improved during chelation. I feel best at the first day of each chelation round. This may be because of the antioxidant properties of ALA. On the last day, I always feel like my brain is being squeezed like a sponge. I'm pretty sure this has nothing to do with the interrupts in my sleep.
    The biggest general improvements have been in the area of digestion. The general advice is to clean up the gut before starting chelation. I've tried a lot of things to accomplish this. Nothing seemed to work long term. The other way around is the way to go for me, chelate in order to cure my gut. I can basically eat anything now without having issues the day after. Sugar doesn't seem to affect me anymore. The only thing that I avoid are animal proteins. I eat a mostly vegetarian diet with some exceptions of fish and chicken once and a while (maybe 1-2 servings per week), although I don't feel that I need it. The main component of my diet are fruits. Athlete's foot is almost completely gone, brain fog is gone, trembling is mostly gone, sugar addiction is gone, headaches are gone, heart problems haven't occured anymore. I've gained a significant amount of weight. Before I started chelation, I weighed 64 kg. For a height of 192 cm, this results in a BMI of 17.4 which is underweight. Now I weigh 70 kg (BMI = 19). My ideal weight is around 80 kg. I guess this is because my gut has healed significantly.
    The only symptoms related to candida that I still have are a warm head after die off and oral thrush when I eat too much prepared foods.
    Other symptoms that are related to energy and mood have improved, but way slower than I expected (while the gut issues have improved much faster than anticipated).

    When I found this forum last year, I found out about the connection between mercury poisoning and methylation problems, so I ordered a test from 23andme. I'm not gonna explain methylation here. This is a very simplified explanation. This a more extensive explanation. The most important thing you have to know is that it is involved in the production of neurotransmitters and catecholamines (like serotonin and dopamine) and also detoxification and the reduction of oxidative stress. It is also connected to the krebs cycle (energy). The main components that are used by the methylation cycle are methylfolate and methylcobalamin.
    If your methylation cycle doesn't work correctly, it may lead to a wide range of diseases like alzheimers, depression, autism, bipolar disorder, heart disease or stroke, chronic fatigue, ... Having methylation mutations is not uncommon. About 50% of the population has at least 1 mutation in the most important gene, C677T. It's mainly the combination of mutations can cause problems. Certain mutations are protective.
    These are my results (+ is a mutation, while - is the normal allele):

    [​IMG]
    Most of this information comes from the talks of Dr Amy Yasko. You can find them on vimeo on her channel.
    The talk that is most important in my case is the one on COMT.


    Because of this, I cannot tolerate methyl donors, which slows recovery down. I've made a separate post about bipolar disorder since I'm most likely affected by it.

    This is how I understand methylation in my case:
    This was my understanding of the Heartfixer page http://www.heartfixer.com/AMRI-Nutrigenomics.htm

    Alcohol, BPAs and heavy metals (mercury, lead, aluminium) interfere with the methylation cycle. This might be the reason why matters got much worse during my first year in college.
    Also, the toxins that candida releases have a negative effect on the methylation cycle.
    TMG is probably one of the first supplements that I can drop.

    All this is obviously just theory and I may have another gene expression. Having mercury intoxication is like having extra random methylation mutations which makes treatment more difficult.
    All my supplements based on theoretical knowledge and are not based on the actual levels of certain compounds. I need a functional methylation panel for that, but that's rather expensive, so I'll have to postpone that.

    Current methylation supplements:
    Hydroxycobalamin 1000 mcg (sublingual): MTRR
    Methylfolate 200 mcg: MTHFR
    Methylcobalamin ~50 mcg: MTRR
    Phosphatidylcholine 300 mg: BHMT and CBS
    Trimethylglycine 500 mg: BHMT and CBS
    Vitamin D3 5000 IU: VRD Taq. Dosage depends on the season. Obviously more during winter than during summer.

    I currently can't tolerate methylcobalamin in high doses. It makes me 'mixed' or hyper without really giving energy.

    Current support for candida:
    Molybdenum 150 mcg: Supports SUOX and combats candida die off.
    Saccharomyces Boulardii: This is a competing yeast strain and 'eats' candida. It is considered to be a probiotic.
    Chromium 200 mcg: Improves blood sugar metabolism.

    Current support for COMT:
    GABA 500 mg: Controls the release of dopamine.
    Magnesium Citrate 500 mg: Improves to function of GABA. I also use this to combat leg cramps (especially during night). It is also possible that a lower protein diet could have solved this.
    Lithium orotate 10 mg: This dose is much lower than used in bipolar disorder, but it seems to have a significant effect.
    L-Tyrosine 500 mg: Precursor of dopamine. Started it only recently. It seems to give me more motivation and it makes me more awake. It seems very effective to counter low periods. I'm curious whether the effect stays long term. If I take 2 doses, I get a headache.

    Other supplements
    Manganese 15 mg: Supposed to reduce bowel inflammation and it improves SOD2.
    Vitamin C 1-2 g: General antioxidant
    Melatonin with B6 3 mg: Sleep
    Glycine 2 g: Amino acid. I feel no difference on this product, so I'm gonna stop using it once the box is empty.

    Rx drugs:
    Ebastine 20 mg: H1 antihistamine for my dust mite allergy
    Fluticasone furoate 27.5 mcg: Corticosteroid for my dust mite allergy
    The combination of the two work very well.

    Supplements/drugs that I used to take (and did work):
    Oregano oil: antifungal
    Red Thyme: antifungal
    Chia seeds: improve bowels
    Bentonite clay: bowel detox
    Dandelion root: liver detox/support
    Coconut oil: antifungal (still take it once and a while)
    Milk Thistle: liver detox/support
    Betaine HCl: stomach acid
    Ashwaghanda: adrenal support
    Iodine: Thyroid support

    Supplements/drugs that didn't do anything:
    Diflucan: antifungal
    Swedish bitters: enzymes
    MegaFlora: (very expensive) probiotic
    SF722: antifungal
    Grapefruit Seed Extract: antifungal
    5-HTP: serotonin precursor
    Adrenal Cortex: adrenal support
    Phosphaditylserine: BHMT (Apparently this lowers cortisol levels, so this is what I dont't want.) PS: I never used it in my current methylation program, so I don't know the effectiveness.

    I tried some NAC a few weeks ago, but it caused nightmares. The effect on my overall wellbeing have been mixed. I'm gonna leave it out for now.

    My most important message is that probiotics didn't do anything (and are expensive).

    Two things have improved since the start of methylation support, energy and mood. I don't know if I can improve energy levels even more. Mood has improved in a weird way. I've had mood swings in the past, but I always had a 'low' mood. My mood didn't go up in a consistent way. I still have 'low' episodes (not that bad anymore), but I have more periods of normal and even 'high' episodes. I guess this is because methyl donors destabilize dopamine levels. Apparently trembling and lack of coordination and balance can be caused by low dopamine.

    The original plan was to do 100 chelation rounds, but that may be too much. I've stopped chelation temporarily, in order to figure out the correct methylation support in the hope to speed up the process of chelation. The plan is to do a functional methylation test to optimize methylation before continuing chelation. Either way, Cutler doesn't believe methylation makes a difference. But I believe that fixing methylation can speed up the healing process. I expect that I don't need any support for methylation once all mercury has been cleaned up, maybe only a 'clean' diet. We'll see.

    Someone pointed out pyroluria on my thread about bipolar. Pyroluria is an abnormality in hemoglobin synthesis. Pyroluria can be cause by genetics but also by heavy metals. It depletes zinc and B6 (CBS uses up B6 and BHMT uses zinc) and it results in a form of anemia and low iron levels. Maybe that is a possible explanation for my rather low ferritin levels? The most outspoken symptom of anemia is a pale skin and a dark color under the eyes. A lot of the symptoms between pyroluria and mercury intoxication are very similar, although the pyroluria symptoms seem more specific. There is an interesting post on curezone which explains a correlation between low ferritin, low thyroid and adrenals and a chronic candida infection. I know that I had to take iron supplements in the past. One of the symptoms of anemia are palpitations.

    The plan for now:
    Do a functional methylation test.
    Do a pyroluria test.
    Then follow one of the methylation plans on this forum.
    Restart chelation.

    Additional results that can be useful (not mentioned in this post):
    Ferritin: 33 mcg/l [22-275]
    Serum B12: 227 ng/l [> 187]
    Serum folic acid: 7.0 µg/l [> 3.1]

    IgA: 215.1 mg/dl [70-400]
    IgG: 1174 mg/dl [700-1600]
    IgM: 73.1 mg/dl [40-230]
    IgE: 29.2 kU/l [< 114]
    Complement C4: 11.9 mg/dl [15-45] (Dunno what this means. Has to do with immune function?)
    Rast d202 nDer p1: 1.8 kU/l [< 0.1] (marker for dust mite allergies)
    Rast d2 dermatophagoides farinae: 2.24 kU/l [< 0.10] (again dust mite allergies)
    Rast d203 rder p2: 2.45 kU/l [< 0.10] (same)
    Wheat f4 IgG: 3.38 mgA/l [< 7.76]
    Tomato f25 IgG: 6.50 mgA/l [< 7.06]
    Celery f85 IgG: 4.96 mgA/l [< 7.06]
    Avocado f96 IgG: 4.72 mgA/l [< 7.06]
    H. pylori IgG: negative
    TSH: 1.87 mU/l [0.35-4.94]
    Leukocytes: 3080/mcl [3700-10000] (Apparently less than 4000 is considered 'low'. A vitamin B12 deficiency could be the cause here.)
    Lymfocytes: 44.4% [16-45] (High count is usually a sign of a viral infection?)
    Monocytes: 9.4% [< 12] (Levels above 8 are high. Chronic inflammation is one of the causes.)
    Neutrophil granulocyte: 1460/µl [1340-5860] (Levels beneath 1700 are considered as 'neutropenia'. Vitamin B12 and folate deficiency is one of the possible causes.)

    Questions:
    What is the connection between the methylation cycle and histamines?
    According to MTHFRsupport, I have a slow liver phase II detox with regards to phase I. An increase in B vitamins speed up phase I, which increases the intermediates and thus oxidative stress. How important is it to fix this? Do I need to fix this before methylation?
    Has anyone tried to avoid phenols (with regard to COMT)?
    What kind of functional methylation test should I order? I'm located in Europe.
    What other tests might be helpful? Maybe serum amino acid levels? T3/T4?
    Are there other things that genetic genie doesn't report that might be intresting, like GCH1 and SHMT? Or are they not all that relevant?

    It is possible that I forgot to include some things in this post. But it is already way too long, so I'm gonna leave it as it is.
     
    Last edited: Aug 12, 2015
    pamojja, sregan, FliskFreya and 7 others like this.
  2. Vic

    Vic

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    Your first 3-4 paragraphs sound a lot like me. I'm curious, at what age did you start using computers?
     
  3. JaimeS

    JaimeS Senior Member

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    Mid-Ohio Valley, United States
    Wowww, @TheChosenOne - that's some post! A very interesting read.

    You might want to look into other pathogens. If you have / have had systemic Candida, there's nothing to say that another little opportunistic sucker hasn't found its way in as well.

    -J
     
  4. helen1

    helen1 Senior Member

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    I've cut and pasted Rich Vank's post below about methylation testing @TheChosenOne:

    There are two types of tests that people are getting involving methylation. One is the Yasko panel, available from www.holisticheal.com (or using a 23andme.com panel to get most of the results of the Yasko panel). This is a genetic polymorphism panel, and it tells you what your tendencies are, based on the genes you have inherited.

    The other type is the methylation pathways panel that is offered by the Health Diagnostics and Research Institute in New Jersey, or the European Laboratory of Nutrients in the Netherlands. This is a biochemical panel that tells you what is actually going on in the biochemistry of the methylation cycle, the folate metabolism and glutathione (you have to order glutathione separately at the European lab).

    They can both be helpful, but I favor use of the biochemical panel, because it gives more direct information about what is going on, and can lead to treatment with the simplified methylation protocol. For those who want to follow the full Yasko treatment program, the Yasko genetics panel is necessary. This program is more complex and also more expensive, but it deals with the issues that show up in the genetics results in more detail. There hasn't been a direct clinical comparison of the outcomes of the two approaches, but both have been found to be helpful.

    I will paste the contact info for the Health Diagnostics lab below, as well as an interpretive guide for the methylation pathways panel.
    Best regards,
    Rich

    Methylation Pathways Panel

    This panel will indicate whether a person has a partial methylation cycle block and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block. I am not associated with the lab that offers this panel.

    The panel requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on a clinician’s letterhead.

    Available from:

    Health Diagnostics and Research Institute540 Bordentown Avenue, Suite 2300
    South Amboy, NJ 08879 USA
    Phone: (732) 721-1234
    Fax: (732) 525-3288

    Email: lab@vitdiag.com

    Lab Director: Elizabeth Valentine, M.D.

    Dr. Tapan Audhya, Ph.D., is willing to help clinicians with interpretation of the panel by phone, or you can use the interpretive guide below:

    March 25, 2012
    Interpretation of Results of the Methylation Pathways Panel
    by
    Richard A. Van Konynenburg, Ph.D.
    Independent Researcher
    (richvank@aol.com)


    Disclaimer: The Methylation Pathways Panel is offered by the European Laboratory of Nutrients in the Netherlands and the Health Diagnostics and Research Institute in New Jersey, USA. I am not affiliated with these laboratories, but have been a user of this panel, and have written these suggestions at the request of Tapan Audhya, Ph.D., Director of Research for the Health Diagnostics lab, for the benefit of physicians who may not be familiar with this panel. My suggestions for the interpretation of results of the panel are based on my study of the biochemistry involved, on my own experience with interpreting panel results as part of the analysis of a fairly large number of cases of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) over the past four years, and on discussion of some of the issues with Dr. Audhya. I am a researcher, not a licensed physician. Treatment decisions based on the results of applying this panel and its interpretation to individual cases are the responsibility of the treating physician.

    Application: In addition to being useful in analyzing cases of ME/CFS, this panel can also be usefully applied to cases of autism and other disorders that involve abnormalities in glutathione, methylation and the folate metabolism.

    The panel includes measurement of two forms of glutathione (reduced and oxidized), S-adenosylmethionine (SAMe), S-adenosylhomocysteine (SAH), adenosine, and seven folate derivatives.

    According to Dr. Audhya (personal communication), the reference ranges shown on the lab reports for each of these metabolites were derived from measurements on at least 120 healthy male and female volunteer medical students from ages 20 to 40, non-smoking, and with no known chronic diseases. The reference ranges extend to plus and minus two standard deviations from the mean of these measurements.

    Glutathione (reduced): This is a measurement of the concentration of the
    chemically reduced (active) form of glutathione (abbreviated GSH) in the blood
    plasma. The reference range is 3.8 to 5.5 micromoles per liter.

    Glutathione plays many important roles in the biochemistry of the body, including serving as the basis of the antioxidant enzyme system, participating in the detoxication system, and supporting the cell-mediated immune response, all of which exhibit deficits in CFS. The level of GSH in the plasma is likely to be more reflective of tissue intracellular glutathione status than the more commonly and more easily measured red blood cell or (essentially equivalent) whole blood glutathione level, which is about three orders of magnitude greater, because red blood cells are normally net producers of glutathione. Also, knowledge of the level of the reduced form, as distinguished from total (reduced plus oxidized) glutathione, which is more commonly measured, is more diagnostic of the status of glutathione function.

    In order to be able to approximate the in vivo level of reduced glutathione when blood samples must be shipped to a lab, it is necessary to include special enzyme inhibitors in the sample vials, and these are included in the test kit supplied by these two laboratories.

    Most people with chronic fatigue syndrome (PWCs), but not all, are found to have values of GSH that are below the reference range*. This means that they are suffering from glutathione depletion. As they undergo treatment to lift the partial methylation cycle block, this value usually rises into the normal range over a period of a few months. I believe that this is very important, because
    glutathione normally participates in the intracellular metabolism of vitamin B12, and if it is low, a functional deficiency of vitamin B12 results, and insufficient methylcobalamin is produced to support methionine synthase in the methylation cycle. In my view, this is the mechanism that causes the onset of ME/CFS. This functional deficiency is not detected in a conventional serum B12 test, but will produce elevated methylmalonate in a urine organic acids test. In my opinion, many of the abnormalities and symptoms in ME/CFS can be traced directly to glutathione depletion.

    Anecdotal evidence suggests that PWCs who do not have glutathione depletion do have abnormalities in the function of one or more of the enzymes that make use of glutathione, i.e. the glutathione peroxidases and/or glutathione transferases. This may be due to genetic polymorphisms or DNA adducts on the genes that code for these enzymes, or in the case of some of the glutathione peroxidases, to a low selenium status.

    Glutathione (oxidized): This is a measurement of the concentration
    of the oxidized form of glutathione (abbreviated GSSG) in the blood
    plasma. The reference range is 0.16 to 0.50 micromoles per liter.

    Normally, oxidized glutathione in the cells is recycled back to reduced glutathione by glutathione reductase, an enzyme that requires vitamin B2 and NADPH. If this reaction is overwhelmed by oxidative stress, the cells export excess GSSG to the plasma. In some (but not all) PWCs, GSSG is elevated above the normal
    range, and this represents oxidative stress. It is more common in CFS to see this level in the high-normal range. This value may increase slightly under initial treatment of a partial methylation cycle block.*

    Ratio of Glutatione (reduced) to Glutathione (oxidized): This is not shown explicitly on the panel results, but can be calculated from them. It is a measure of the redox potential in the plasma, and reflects the state of the antioxidant system in the cells. The normal mean value is 14. PWCs often have a value slightly more than half this amount, indicating a state of glutathione depletion and oxidative stress. This ratio has been found to increase during treatment of a partial methylation cycle block, but other types of treatment may be necessary to bring it to normal.*

    S-adenosymethionine (RBC): This is a measure of the concentration of S-adenosylmethionine (SAMe) in the red blood cells. The reference range is 221 to 256 micromoles per deciliter.

    SAMe is produced in the methylation cycle and is the main supplier of methyl (CH3) groups for a large number of methylation reactions in the body, including the methylation of DNA and the biosynthesis of creatine, carnitine, phosphatidylcholine, coenzyme Q10, melatonin and epinephrine. This measurement is made in the red blood cells because the level there reflects an average over a longer time and is less vulnerable to fluctuations than is the plasma level of SAMe.

    Most PWCs have values below the reference range, and treatment raises the value.* A low value for SAMe represents a low methylation capacity, and
    in CFS, it usually appears to result from an inhibition or partial block of the enzyme methionine synthase in the methylation cycle. Many of the abnormalities in CFS can be tied to lack of sufficient methylation capacity.

    S-adenosylhomocysteine (RBC): This is a measure of the
    concentration of S-adenosylhomocysteine (SAH) in the red blood cells. The reference range is 38.0 to 49.0 micromoles per deciliter.

    SAH is the product of the many methyltransferase reactions that utilize SAMe as a source of methyl groups. In CFS, its value ranges from below the reference range to above the reference range. Values appear to converge toward the reference range with treatment.

    Sum of SAM and SAH: When the sum of SAM and SAH is below about 268
    micromoles per deciliter, it appears to suggest the presence of
    upregulating polymorphisms in the cystathionine beta synthase (CBS)
    enzyme, though this may not be true in every case. For those considering following the Yasko treatment program, this may be useful information.

    Ratio of SAM to SAH: A ratio less than about 4.5 represents low
    methylation capacity. Both the concentration of SAM and the ratio of
    concentrations of SAM to SAH are important in determining the
    methylation capacity, because they affect the rates of the methyltransferase reactions.

    Adenosine: This is a measure of the concentration of adenosine in the
    blood plasma. The reference range is 16.8 to 21.4 x 10(-8) molar.

    Adenosine is a product of the reaction that converts SAH to homocysteine. It is also exported to the plasma when mitochondria develop a low energy charge, so that ATP drops down to ADP, AMP, and eventually, adenosine. Adenosine in the plasma is normally broken down to inosine by the enzyme adenosine deaminase.

    In some PWCs adenosine is found to be high, in some it is low, and in some it is in the reference range. I don't yet understand what controls the adenosine level in these patients, and I suspect that there is more than one factor involved. In most PWCs who started with abnormal values, the adenosine level appears to be moving into the reference range with methylation cycle treatment, but more data are needed.

    5-CH3-THF: This is a measure of the concentration of 5L-methyl
    tetrahydrofolate in the blood plasma. The reference range is 8.4 to 72.6 nanomoles per liter.

    This form of folate is present in natural foods, and is normally the most abundant form of folate in the blood plasma. It is the form that serves as a reactant for the enzyme methionine synthase, and is thus the important form for the methylation cycle. It is also the only form of folate that normally can enter the brain. Its only known reactions are the methionine synthase reaction and reaction with the oxidant peroxynitrite.

    When there is a partial block in methionine synthase, the other forms of folate continue to be converted to 5L-CH3-THF by the so-called “methyl trap” mechanism. Some of the 5L-CH3-THF is broken down by reaction with peroxynitrite, which results from the condition of oxidative stress that is usually concomitant with glutathione depletion.

    Many PWCs have a low value of 5L-CH3-THF, consistent with a partial block in the methylation cycle. Most methylation treatment protocols include supplementation with 5L-CH3-THF, which is sold over-the-counter as Metafolin, FolaPro, or MethylMate B (trademarks), as well as the newer Quatrefolic (trademark) and in the prescription “medical foods” supplied by PamLab, including Deplin, CerefolinNAC and Metanx. There are some others on the market that include both racemic forms (5L and 5R) of this folate.

    When methylation treatment is used, the level of 5-CH3-THF rises in nearly every PWC. If the concentration of 5-CH3-THF is within the reference range, but either SAM or the ratio of SAM to SAH is below the reference values, it suggests that there is a partial methylation cycle block and that it is caused by inavailability of sufficient bioactive B12, rather than inavailability of sufficient folate. A urine organic acids panel will show elevated methylmalonate if there is a functional deficiency of B12. I have seen this combination frequently, and I think it demonstrates that the functional deficiency of B12 is the immediate root cause of most cases of partial methylation cycle block. Usually glutathione is low in these cases, which is consistent with such a functional deficiency. As the activity of the methylation cycle becomes more normal, the demand for 5-CH3-THF will likely increase, so including it in the treatment protocol, even if not initially low, will likely be beneficial.

    10-Formyl-THF: This is a measure of the concentration of 10-formyl
    tetrahydrofolate in the blood plasma. The reference range is 1.5 to 8.2 nanomoles per liter.

    This form of folate is involved in reactions to form purines, which form part of RNA and DNA as well as ATP. It is usually on the low side in PWCs, likely as a result of the methyl trap mechanism mentioned above. This deficiency is likely the reason for some elevation of mean corpuscular volume (MCV) and mean corpuscular hemoglobin (MCH) often seen in PWCs. This deficit may also impact replacement of cells lining the gut, as well as white blood cells.

    Rarely, 10-formyl-THF is found to be much higher than the normal reference range. If this is found, the patient should be examined for cancer, since cancer cells upregulate this form of folate in order to make purines more rapidly to support their rapid cell division.

    5-Formyl-THF: This is a measure of the concentration of 5-formyl
    tetrahydrofolate (also called folinic acid) in the blood plasma. The reference range is 1.2 to 11.7 nanomoles per liter.

    This form is not used directly as a substrate in one-carbon transfer reactions, but it can be converted into other forms of folate, and may serve as a buffer form of folate. Most but not all PWCs have a value on the low side. It is one of the
    supplements in some methylation protocols. It can be converted to 5L-CH3-THF in the body by a series of three reactions, one of which requires NADPH, and it may also help to supply other forms of folate to the cells until the methionine synthase reaction comes up to more normal activity.

    THF: This is a measure of the concentration of tetrahydrofolate in
    the blood plasma. The reference range is 0.6 to 6.8 nanomoles per liter.

    This is the fundamental chemically reduced form of folate from which several other reduced folate forms are synthesized, and thus serves as the “hub” of the folate metabolism. THF is also a product of the methionine synthase reaction, and participates in the reaction that converts formiminoglutamate (figlu) into glutamate in the metabolism of histidine. If figlu is found to be elevated in a urine organic acids panel, it usually indicates that THF is low. In PWCs it is lower than the mean normal value of 3.7 nanomoles per liter in most but not all PWCs.

    Folic acid: This is a measure of the concentration of folic acid in
    the blood plasma. The reference range is 8.9 to 24.6 nanomoles per liter.

    Folic acid is a synthetic form of folate, not found in nature. It is added to food grains in the U.S. and some other countries in order to lower the incidence of neural tube birth defects, including spina bifida. It is the oxidized form of folate, and therefore has a long shelf life and is the most common commercial folate supplement. It is normally converted into THF by two sequential reactions catalyzed by dihydrofolate reductase (DHFR), using NADPH as the reductant. However, some people are not able to carry out this reaction well for genetic reasons, and PWCs may be depleted in NADPH, so folic acid is not the best supplemental form of folate for these people.

    Low values suggest folic acid deficiency in the current diet. High values, especially in the presence of low values for THF, may be associated with inability to convert folic acid into reduced folate readily, such as because of a genetic polymorphism in the DHFR enzyme. They may also be due to high supplementation of folic acid.

    Folinic acid (WB): This is a measure of the concentration of folinic acid in the whole blood. The reference range is 9.0 to 35.5 nanomoles per liter.

    See comments on 5-formyl-THF above. Whole blood folinic acid usually tracks with the plasma 5-formyl-THF concentration. They are the same substance.

    Folic acid (RBC): This is a measure of the concentration of folic acid in the red blood cells. The reference range is 400 to 1500 nanomoles per liter.

    The red blood cells import folic acid when they are initially being formed, but during most of their lifetime, they do not normally import, export, or use it. They simply serve as reservoirs for it, giving it up when they are broken down.

    Many PWCs have low values of this parameter. This can be caused by a low folic acid status in the diet over the previous few months, since the population of RBCs at any time has ages ranging from zero to about four months. However, in CFS it can also be caused by oxidative damage to the cell membranes, which allows folic acid to leak out of the cells. Dr. Audhya reports that treatment with omega-3 fatty acids has been found to raise this value over time in one cohort.

    * Nathan, N., and Van Konynenburg, R.A., Treatment Study of Methylation Cycle Support in Patients with Chronic Fatigue Syndrome and Fibromyalgia, poster paper, 9th International IACFS/ME Conference, Reno, Nevada, March 12-15, 2009. (http://www.mecfs-vic.org.au/sites/w...Article-2009VanKonynenburg-TrtMethylStudy.pdf)
     
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  5. TheChosenOne

    TheChosenOne Senior Member

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    I had my first computer when I was 12. Why does that matter?
    PS I'm a computer engineer :)
    I forgot to mention this in the original post.
    I did a blood test and a stool test for parasites and all were negative. There were also no signs of salmonella, yersina, shigella and campylobacter. (Dunno what these things are but I guess not having them is a good thing.)
    Although all tests were negative, I considered parasites at some point because a lot of alternative doctors claim that most candida infections are caused by parasites. I used natural anti-parasite products like black wallnut hulls and wormwood. It could be coincidence, but these things caused some slight irritation. I don't know if I really have them. I know that testing for parasites is difficult and that there are a lot of false negatives. I assume that I don't have them because my digestion is getting back on track with chelation alone.

    @helen1 That is a long post :eek: Thanks for the info!
     
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  6. Vic

    Vic

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    "Anyway, in the last years of primary school and the first years of high school, I started to get skinny to the point that people wondered whether I ate enough. I became chronically underweight and I actually started to feel ill at that time. For some reason I started to develop some form of ADD which appeared and disappeared from time to time, but not serious enough to be a big problem. I remember that I became very irritated when I was bored, which was basically most of the time. I thought a lot of courses went way too slow or were a lot of bullshit and braindead nonsense. "

    So around that time? Computers may not be the primary cause, but in my experience they make CFS/ME related fatigue and "illness" worse. I'm only guessing for you, but you might want to drop computer engineering. Does your left shoulder collapsed forward and/or internally rotated? Another question that might seem random, but do you have an 8 pack, 6 pack, or 4 pack? I have 8. It's genetic.
     
  7. TheChosenOne

    TheChosenOne Senior Member

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    I'm kind of aware of that.
    I don't think so.
    I don't know. :)
     
  8. Valentijn

    Valentijn Senior Member

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    Yasko's theories about CBS are wrong. The listed CBS and BHMT mutations have very little or no impact at all. She's wrong about most things in fact - if you can't find a completely independent source (or the original source) for the claims she makes, it's best to ignore them.
     
  9. jimells

    jimells Senior Member

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    northern Maine
    Well that's disappointing, but good to know. It sure is hard to separate the wheat from the chaff...
     
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  10. TheChosenOne

    TheChosenOne Senior Member

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    Do they offer the exact same test? I don't see BH4 mentioned here. Isn't that important?
    I'm aware of that. But is vicious cycle increase of sulfur/ammonia and CBS upregulation a possibility? I got much better since I dropped most protein.
    What other CBS mutations are more important?
     
  11. Valentijn

    Valentijn Senior Member

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    Well, anything is possible. But then it's just baseless speculation, and people can randomly imagine millions of things which might cause millions of problems.
    http://forums.phoenixrising.me/index.php?threads/interesting-cbs-variations.24492/

    Only severe down-regulations have been found to cause problems. Mild upregulations (such as C699T) have been found to be beneficial.
     
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  12. TheChosenOne

    TheChosenOne Senior Member

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    It's been a while since I've given an update. I've come to new insights. Foremost, I've been completely wrong about half my first post. I'll explain in a moment what I was wrong about and why.
    A few months ago, @caladonia made a reply to my thread and he mentioned pyrrole disorder as a cause of bipolar. Pyrrole disorder (also called pyroluria) is a metabolic disorder in which the liver produces too much pyrroles. This is a compound used for the production of hemoglobin. Pyrroles tend to bind themselves with certain minerals and vitamins, mainly vitamin B6 and zinc, but also magnesium and manganese. Zinc is used in a wide range of enzymes as well as the production of neurotransmitters and testosterone. B6 is necessary for the transulfuration pathway to work and is also used to convert Glutamate into GABA. GABA is what slows down neurotransmitters and it has a calming effect. Glutamate is excitatory and causes awareness. Most people with anxiety problems have too much Glutamate or not enough GABA or both.
    For a full list of symptoms see here.

    Not long after I stopped the chelation protocol, I redevelopped some form of digestive distress. It took a while to figure out what was going on. Turns out I only took zinc during chelation itself and not in between rounds, so also not during the long break I was/am in. The first thing I did was retaking the B complex just to experiment what would happen (no active B forms in this one). The difference was there but it wasn't massive. I felt somewhat better for sure. I ordered p5p (which is an active form of B6). The difference was about the same. Mood swings decreased, anxiety went down. No more nightmares or vivid dreams. So I slowly upped my zinc dosage from just 50 mg to 150 mg right now.

    Right after chelation, most of my digestive issues were gone, but not all of them. Right now they are gone 100% :) I can eat everything I want inluding fast food like pizza and hamburgers. The only thing that I still avoid is pure sugar. Other types of sugar are fine (mostly). So I can eat bread and potatos without much problems. Despite the fact that my digestion is 'fixed', I still have die-off from candida which I don't completely understand. I know that a fungus infection can be located in other locations than the digestive tract. It can infect other organs as well (liver, prostate, galbladder...). The die off I still have is limited to just an hour or so per day, rarely a whole afternoon. I feel like this is highly dependent on the amount of rest (sleep) I have and stress levels. The die off used to be something permanent which was horrible.
    Remember that I mentioned allergies? They are all gone (except dust mites). Including problems with milk. According to Promeathase, I should have the ability to digest milk. I found it kind of odd that this was a problem. I have all the 'good' gene variants for digesting lactose:
    [​IMG]
    There is an other remarkable thing that has changed. The amount of hair on my chest has more than trippled. I guess testosterone levels are finally starting to rise. I see this as an indication that I'm moving in the right direction. Testosterone is highly zinc dependent. It's also true that testosterone blocks the transsulfuration pathway, hence lowering glutathione production. It's possible your body will lower testosterone in order compensate for low glutathione?

    There is not a whole lot of research done about pyrrole disorder. The best information that I can find is the presentation from dr Klinghardt. I know it's a 2 hour video but it's explained in a very easy way.


    There also seems to be a connection between candida and pyrrole disorder. I've found an 'aternative' website that makes the connection between a candida infection and pyrrole disorder, both promoting each others presense. It's actually the only source I found that is so complete. This article is also worth reading.
    A summary.
    I don't know how much of this information is correct. But it seems to describe a huge part of my symptoms pretty accurate. Symptoms:
    Pale skin. Especially as an infant quite extreme actually.
    White spots on the fingernails (leukodynia) are a very strong indication of this problem. This is a picture that was taken a few weeks ago. Even after some moderate zinc supplementation. I used to have them in abundance (and much larger) as a child. About half of people with pyrrole show these white spots.
    [​IMG]
    Trouble sleeping and going late to bed.
    Rarely any dream recall.
    Very bad tolerance to stress.
    Extreme anxiety as a child.
    Late puberty.
    Extreme sensitivity to light. Snow during a sunny day or white clouds hurt enormously. Also some sound sensitivity. (Both could also be related to something else, see later.)
    Cold hands and feet. (Limited body heat generation might be the reason why I'm doing worse during winter time and not necessarily because of low vitamin D. This also explains normal thyroid TSH levels, so probably no thyroid problem.)
    Neurological pain, like everywhere.
    Muscle cramps.
    Blackouts.
    A lot of these symptoms are partially stress dependent.

    Pyrrole disorder can mimic/cause Multiple Sclerosis.

    For a more more psychological point of view: click. Of course the biochemical explanation is the only relevant one.

    Pyrrole disorder doesn't explain everything. There are things that are probably caused by something else. I feel like I'm still missing a piece of the puzzle.

    To be honest, doing chelation without medical supervision is kind of madness. Especially mentally this is extremely demanding. I had periods where my thinking process was completely blocked. On the last night of most chelation rounds, I was usually so exhausted that I just slept through my alarm, missing the dose I had to take. I wish I knew about this a long time ago, then I could have fixed this first. Mistakes were made...
    Pyrrole disorder might explain the low white blood count. 3000 is really low. According to Klinghardt: "The white blood cells are the last things that looses to zinc. If that goes down, it's really really bad."
    Something else Klinghardt said: "There ain't such a thing as indigo children. This is all way of rationlalizing that we screwed these children up and we are trying to make it something sacred so we don't have to do anything about it. These are children that we hurt really really badly. And the indigo children look is a KPU look. And that goes away when you treat it. They become normally tanning children that don't look so transparent like you can look through them."
    This is kind off odd, but it could just be coincidence.
    One thing my mother told me recently: "The only thing you did as a baby was eating and sleeping. I always wondered why you slept so much."
    Both sources are talking about lyme as a major cause of pyrrole disorder. I hope this is not the case because it is a hard to cure.

    So far, I've had very good results with p5p and a B complex, together with zinc. I also tried nattokinase and serraptase. My first impression is that they are very calming. They also seem to have cured some skin problems (coarse skin), but that's the easiest thing to get rid of. I guess other things will take much longer.
    I recover faster from candida die off. Once the die off stops, I don't feel terrible anymore after about half an hour.
    Either way, whatever I do, I'm lost if I don't sleep enough.

    Things I was wrong about:
    Pyrrole disorder is a way more complete description. It's actually overwhelmingly accurate in my case. What I considered (hypo)mania might might just be normal after all and be periods of mental clarity and lack of brain fog and neurological problems. If you're sick for so long, it's a bit hard to know how being healthy feels like.
    I think there is also an other factor at work, inflammation.
    The reason why lithium helped is because it is protective for a wide range of stuff. I now only take it once a week, until the bottle is empty.

    I dedicated a whole part of my first post try to explain how genetic mutations can lead to methylation problems. I'm now convinced that this is highly inaccurate. Genetics is almost never the cause of any disease, unless you are very unlucky. There are only genetic tendencies, but as long as there are no bad environmental factors, they are not really relevant. Everyone has genetic weaknesses somewhere. The question is rather whether they are being expressed or not. Furthermore, most of the so called 'mutations' are just polymorphisms, so they are not necessarily malignent. Take for example the C677T gene. About 10% of the Western population has a double mutation and most of them are doing perfectly fine, more than 50% has at least 1 mutation. Overall, they have a lower output of SAMe, but they have more glutathione available. Which one is better? You tell me. Only very unfortunate combinations or mutations that have an occurance in less than 1% of the population might be the only thing that is worth concidering.
    Genetics can be helpful if you want to cure yourself, but they are unlikely to be the cause of disease.
    To go over them quickly:
    COMT V158M++ (~20%): Advantage in memory and attention tasks. Higher dopamine levels. COMT--: More stress resistent. Promethease sees ++ as beneficial.
    MTRR A66G+- (~30%): Normal.
    MTRR K350A+- (~20%): Lack of research.
    MTRR A664A+- (~40%): Possibly need more B12. ++ is kind of rare.
    BHMT-02++ (~10%): Shortcut through the methylation cycle. Is not important once the long route is fixed. May be related to AD(H)D.
    BHTM-08++ (~15%): cfr.
    AHCY-01+- (~20): Not much research about it. Possibly higher cysteine levels.
    AHCY-19+- (?): cfr.
    CBS C699T+- (~50%): Slight CBS upregulation. Lower homocysteine levels and higher glutathione. Beneficial.
    CBS A360A+- (?): Lack of research.

    So, there isn't a single polymorphism that can cause any problems. I guess the treatment of Yasko relies on a lot of try and error and she probably uses genetics to back up her treatment with some sort of theoretical base which may or may not make sense.

    Something else I found out.
    Remember in the first post, I was talking about a feeling that could be described as 'burning brain'. I'm starting to become convinced that this may be inflammation. The reason why I believe I'm dealing with inflammation is because I tried two anti-inflammatories recomended by Hip with varying results. This problem is actually the most limiting issue. Other stuff that help with this problem is Magtein (Magnesium that crosses the BBB).
    I have great success with N-Acetyl Glucosamine (NAG), but I have to take much higher doses than what he takes. It also loses potential after a while. I've also tried flax seed oil, but not consistent enough to be able to conclude anything. I had a terrible experience with turmeric, which I had high hopes for. I really think it has great potential, but I can't use it for now for some reason. The effect of turmeric were similar of that of N-Acetyl Cysteine (NAC). NAC almost nocked me out. You can read about it here.
    Either way, whatever I do is mostly irrelevant if I haven't slept enough. Now that I'm working and can't sleep than I'm used to, this problem has become really apparent.

    I have no idea what causes this burning sensation/inflammation. It is possible that glutathione levels are low? Maybe it's a cortisol problem (it subsides during the evening) or glutamate overload. I don't think pyrrole disorder can cause these levels of inflammation.
    This problem is somewhat correlated with trembling/other neurological problems. If they get worse, inflammation gets worse. One thing that is really odd is the fact that this pain can move around. Usually it's on the left side of my head, sometimes right behind my eyes, other times it's everywhere or more to the side of my neck.
    There are certain things that aggravate this. Bright light, loud noises, large groups of people, reading articles/books, stress. In practice, this means things like supermarkets, stores, studying, cinema, ...
    I also think inflammation is the cause of the numerous headaches I had as a child.

    There are things that I cannot explain at this moment:
    Random neurological pain. It can occur in my back, knees, thumbs.
    Joint pain that moves around. Used to be in my right knee for some time, right shoulder, but mostly in my fingers.
    Itching left shoulder.
    Pins and needles on my back, chest and head (only after exercise).
    Heart pressure/pain.
    Balance problems which occur at random.
    These symptoms occur mostly together.

    Other rare things that happen:
    'Double vision' in my right eye. It is very difficult to read anything with it, even with glasses and big font. It looks like words are moving and I don't have complete vision. I have a -2 correction, which isn't that big. I've recently noticed that I have a layer of static noise on top of my vision. It's called Visual Snow, but it's very minor and I don't notice unless I focus on it.
    I also have some eye floaters.

    Something that is very weird: sort of 'pulsating' that can occur everywhere, usually in my arms. I hope I can record this sometime.

    Doing a urine test for pyrrole disorder is probably not all that useful for multiple reasons. Foremost, I've been taken large amounts of B6 and zinc. And now that I'm no longer studying but working, stress levels are greatly reduced.
    I've ordered a urine test anyway, but I expect it to be negative. For now, I've ceased all supplements. By the time I do the urine test, it would be 2.5 weeks without them.
    Meanwhile at the office without supplements and a lack of sleep. What you see here is what I have all the time, internal tremors. But now they are clearly visible.


    Edit: I've done the urine test (from Keac in The Netherlands). Not under uptimal conditions. There was a bit of light coming the the room. I don't have fluorescent lights. But I did use aluminium foil. I've sent the package through the post. Unfortunately, the people at the post office didn't understand "as fast as possible", so it was 6 days on it's way. Uncooled!
    There are two reasons for the test to be negative. The amount of supplements I took before doing the test. The lab states that: "Your result can be false negative if you recently took vitamins and minerals on a regular basis. The amount of excreted HPL decreases gradually and will in the short period that you are not using supplements, right before the test, go up a little, but maybe inadequate to get a positive result. In general you can assume that the test will be negative if you've taken more than 100 mg B6 for a long period of time.".
    Second reason is the time between collection and testing. According to Applied Analytical Laboratories:
    I was highly surprised that the test came back as 'lightly positive' which makes me wonder what the real result is. The actual number is 0.625 (they use umol/l). According to the half-life counting, it would be 2^12 = 4096 time higer which is kind of impossible. So the half life rule is probably something that only works initially.
    This result is in line with the hair test and confirms what I already knew. Now I know a bit more.
    Pyrrole disorder is an indicator that there is something wrong and it is an important marker for oxidative stress and inflammation.
    The question I have is what the real value of this test actually was. And more importantly, whether lyme is involved in all this. If that's the case, it would change the whole story.

    The lab advices maximum 30 mg of zinc and 50 mg of p5p per day, which are very low doses.

    I've been taken 3x250 mg B6, 100-150 mg zinc picolinate and 50 mg p5p per day. Especially the high B6 levels are really beneficial. It will take some time to understand what the implications are long term, but so far they are good. All white zinc spots on my fingers are gone. I have less cold hands and feet. Candida die off is waaaaay down. Neurological pain and muscle pain also lower.
    I may need to go as high as 2000 mg B6 / day. That's 1000x the daily recommended dose :) 100 mg zinc is probably still too low. But taking high amounts of zinc can knock off copper levels.

    Spoken about lyme, there are a lot of blogs of people who are dealing with lyme. They contain a tremendous amount of helpful information. Especially when it comes to fighting inflammation. Coincidentially, I found a blog of someone who has done a hair test that has a striking resemblance with my own hair test. The symptoms she had/has (halfway through the page) are mostly similar as well. She got better through chelation only.

    I always had the idea that people with lyme are bedridden, but this isn't the case in most situations.

    Some other video that I stumbled upon from someone who is dealing with lyme:


    Listen to what he says from 10m40s to 13m00s.

    There are other symptoms that are interesting, especially this one:
    In the meantime, I've made an appointment with a (ILADS) lyme and ME/CFS specialist, to figure out if there is a possibility of having lyme and also to figure out other stuff. Things are becoming kind of complicated. Someone on this forum made a post about him. I still have to read it.

    Lyme tests tend to be very inaccurate and have a high rate of false negatives. I heard the IGeneX lab has the most accurate test?

    I hope next post, I'll be able to post some lab results.
     
    Last edited: Apr 12, 2016
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  13. PeterPositive

    PeterPositive Senior Member

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    @TheChosenOne
    Interesting post. I too struggle with pyrrole disorder and my urine test came back positive even after pausing zinc and B6 for only 3 days.

    I have not pushed neither zinc nor B6 at the levels you have done. I also have borderline low-copper so I am taking a bit of Cu (2mg) alongside 50mg zinc/day.

    I've also tried to push B6 (p5p) up to 100mgs without seeing major changes. When I tested my serum B6 levels it was through the roof (66, range 12-30) so I have reduced it. From multiple tests it looks like I probably need more zinc but not much B6. Also high dose biotin (5mg/day) doesn't seem to do much of a difference for me.

    cheers
     
  14. u&iraok

    u&iraok Senior Member

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    It doesn't sound like your candida is really gone. A lot of times people feel better so they think it's gone and stop their treatment. It's probably also left you with Leaky Gut which allows it to travel to the rest of your body, making the candida systemic. At any rate, you'll find out soon, after you eat bread and potatoes for a while.

    Detoxing metals will make candida worse because as the metals flow through the intestines they make the candida spread so you really need to deal with candida first.

    It also sounds like you're trying to do a lot of things at once. Many vitamins will make candida grow. Most importantly, there's wisdom in treating issues in a proper order. It sounds like you need guidance from a good ND or other good doctor. Candida and any infections have to be treated first. Look at candida as an infection, not something that needs to be reduced or died down but an infection that needs to be eradicated before you can work on other issues.
     
  15. TheChosenOne

    TheChosenOne Senior Member

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    I haven't checked my copper levels yet. That's why I'm only taking 100 (150) mg of zinc.
    I didn't find much difference between B6 and p5p. Maybe that's for the best. p5p is expensive. Did you test B6 or the active form?

    I'm sure it isn't gone. It never was. I've tried to eliminate the candida problem, but nothing seemed to work. I was able to 'control' it with a strict diet, but that was exhausting. I've tried multiple antifungals as well. My internist didn't want to give me nystatin because I might need it in an emergency situation.
    I'm aware that detoxing metals makes the candida problem worse. But the metals don't come back, so at least that's something permanent.
     
  16. JES

    JES Senior Member

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    Pyroluria is something I looked into long ago as well when I was trying a shotgun approach of taking different supplements for my CFS, but I haven't seen strong evidence to suggest it's an established disorder. There is a lack of peer reviewed articles, the little information I managed to find came from 1960s. Don't get me wrong, B6 and Zinc may well benefit some CFS patients, but I think we should be careful speculating with secondary unproven conditions like pyroluria when CFS itself is still one big mystery.
     
  17. u&iraok

    u&iraok Senior Member

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    You should try and seek out a professional. Dr. Biamonte is an expert in candida, he got rid of mine, I had a bad strain of it and I had it systemically. I tried for a few years to get rid of it, he got rid of it in a few months. That was 2001, haven't had it again. But at least find someone that specializes in candida. No need to suffer (I don't want you to think I have any interest in pushing Dr. Biamonte--I just do it because I know there are few candida experts out there and he is one.)

    Also, candida (the infection/morph from beneficial yeast to harmful fungus, not the normal small colonies of the yeast) taxes your immune system and keeps you from assimilating nutrients which makes it a very serious problem.

    You have to rotate antifungals (colloidal silver, oregano, horopito, lomatium, splilanthes and others), every 6 days or so or the candida will become immune to them.

    Sticking to the candida diet is essential.

    Regarding taking vitamins/supplements while having candida: B- complex, vitamin D, CoQ-10, Calcium, Copper, and Iron spread candida. Other nutrients protect the Candida from the medicines used to kill it

    Regarding nystatin, here's a clip from an article by Dr. Biamonte: Limitations of Nystatin and Diflucan

    "Nystatin is particularly known for causing drug resistance in different strains of Candida Albicans. It has done this for several reasons. One is that it has been so widely prescribed. Millions of individuals prescribed this drug equals billions of colonies of Candida have had a chance to mutate against it. Beyond this however, it is typical for Nystatin to be prescribed for periods of time that exceed 30 days. My contention is that drug resistance in Candida colonies begin after the colony has been exposed to the same medication for 21 days continuously. Nystatin can be prescribed for 30,60 or 90 days at a time.

    Diflucan is rarely prescribed for that long because it is simply too toxic and may cause liver and kidney damage. However is it not as toxic as Nizerol which could cause a disaster if prescribed that long.

    Nystatin is active mostly in the intestinal tract and is poorly absorbed systemically. This is an advantage of Diflucan or Nizerol in that they are absorbed systemically and are not limited to the intestinal tract."
     
  18. PeterPositive

    PeterPositive Senior Member

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    Long term use of 100+ mgs of zinc (daily) is more than enough to drop your copper levels. Maybe not with pyroluria... but it depends on how severe it is.

    In my case (as per the signature) it's considered a moderately elevated HPL value, so it shouldn't require massive amounts of Zn. Testing my levels of Zn (serum and red blood cells) while taking 30mgs / day still showed borderline insufficiency so my current dose is around 50mgs/day.

    Naturally we're all different so you may be responding in a completely different way. In any case I'd recommend testing your levels to avoid messing up other nutrients. Minerals are very tricky.
     
  19. TheChosenOne

    TheChosenOne Senior Member

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    I think of pyrrole disorder as an additional problem, but not as a causative. I think pyrrole in my case is caused by candida and heavy metals and maybe other infections (still to be investigated).
    Taking B6 definitely has some effects on mood and sleep. The only time when I feel bad is when I'm actually feeling sick. I also feel less anxious. My sleep has improved dramatically. I actually fall asleep very fast now. So it has some effect. But other problems (pain, neurological problems, feeling cold, headaches, burning sensations, energy problems, ...) didn't really improve.
    Alright, I'll stick with 50 mg for now until I have more info.
     
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  20. TheChosenOne

    TheChosenOne Senior Member

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    It's been a while since I got all the results. Figuring everything out and writing it all down took some time, hence the delay. I also wasn't really overjoyed in starting to write either.

    During the first appointment at Himmunitas, you have to fill in a list with symptoms.
    Dr Richard Horowitz has a similar questionnaire that specifically assesses Lyme. I got a score of 45 when I filled in his list which implies a high probability of a tick-borne infection.
    Himmunitas is led by Dr. Kenny De Meirleir (KDM) who is a professor at Vrije Universiteit Brussel. People from whole Europe come to Belgium to visit him.

    KDM quickly goes over the list.
    "I know what's going on." he said. "Please lay down."
    He pushed on my lower abdomen which hurt a lot. "The connection between your small and large intestine is inflamed. The good news is that this is easy to fix."
    KDM doesn't really says much but he asks very specific questions.
    How long has this been going on? What is your profession? Where do you live? Do you have any fillings? Do you have any pets? Do you take any medications?
    A few minutes later he already wrapped up.
    "I'm sure this is Lyme. But we'll wait for the test results. Soon, you'll receive a list of tests that we will run."
    It felt like I was only 10 minutes in his office.

    KDM has a reputation to call everything Lyme. I wanted proof, black on white.

    One day later, I received an email with all the tests and price (in Euro).
    Mold antibodies 41.72
    Immunophenotyping 20
    Pro-inflammatory Cytokines 164
    CD57 absolute count 62
    SCD14 70
    PGE2 Elisa 70
    VEGF Elisa 70
    IMBA 75
    Ammonia 70
    Kynurenic acid 100
    BABESIA FISH 140
    DNA extraction 50
    Bartonella PCR 99
    SeraCHLAM 159
    Borrelia elispot LTT 234.49
    SeroYERS 159
    C/INFL 63
    sIgA 70
    MSA 280
    Bartonella Al 28
    1.25 di OH VitD 7
    Food allergy test 160
    H2S 10
    Urine test 130

    Total cost: 2332.21 euro. Because Himmunitas is a private institution, none of this is refunded.

    I guess KDM knows what he is doing so I just approved this list.

    A few weeks later I had to do a lactose test. Two days later a fructose test together with the above blood tests.
    The lactose and fructose test measure if you're breathing out hydrogen. If so, this means that you're missing an enzyme to process lactose/fructose. Doing this test requires measurements every 30 minutes. It takes a few hours in total.
    During the blood test, about 10 vials are collected (still not all that much considering the amount of tests). The tests are sent to various labs around the world.
    The MSA test is a stool test which you have to collect yourself, like the urine test.
    Before blood is collected, the assistant goes over all the tests that will be ordered. You have to sign these documents so they can legally requests payment. During this whole time you don't visit KDM.

    It takes about 2 months before the blood results are in. (For me tests were done in May and the results were available in July.)
    This is when you visit KDM again.

    Beforehand, I had to do a bike test to test heart and oxygen intake capacity. This test takes about 20 minutes and requires increasing effort. The experiment is very simple. Just keep on cycling until you can't keep up with a certain difficulty anymore.

    Afterwards you return to the waiting room and wait until the professor calls you in.

    KDM: "You've gone through an active Lyme infection. This has changed the flora of your bowels. You have SIBO - small intestine bacterial overgrowth. 50% of your bacteria are anaerobic, while it should only be 10%. This probably explains your high ammonia levels, which is twice as high as it should be. You are constantly poisoning yourself from the inside out."
    "We've also detected some food allergies, but those are only secondary."
    - "Have you detected any coinfections?"
    "No coinfections were found with our tests. I'm not going to hunt them right now."
    "It makes no sense to start antibiotics against Lyme at this point. We're going to fix your intestines first. This is done through phytotherapy. As long as Lyme stays at bay, this shouldn't be too hard. I hope that I can send you your report today, but my assistants are complaining that they have to work 2 hours more today. You can't work in this country anymore."
    He concluded with "No worries. You're gonna be alright."
    Another very short encounter.

    Turns out my suspicion was right. Finally I've found someone that could actually help me.

    On Monday (instead of Friday), I received my report. It consisted of 26 pages worth of test results. The prescriptions and supplement list were added, including some directions and a food diet. KDM didn't mention anything about this. I guess you just have to follow the instructions on paper.

    The results
    The results below can be kind of technical. The lab results are in red.
    Reference ranges are between [] as usual.

    Summary and conclusion
    See later for an explanation of the summary.

    Abnormal results
    Elispot LTT - Arminlabs (Lab in Germany)
    CD57 - RED Laboratories
    Borrelia burgdorferi is the bacterium that causes Lyme disease. It was first discovered by Willy Burgdorfer in 1982 after the emergence of a mysterious disease that caused arthritis in Connecticut, Lyme. It was first tought to be a member of the syphilis family because the bacteria looked very familiar.
    Lyme disease is primarily transmitted by the bite of a tick. Because it is a spirochite, the bacteria can drill itself rapidly through tissues. It can reach the heart, central nervous system, bone marrow and brain within a matter of days after the initial infection.
    The official guideline for diagnosing Lyme is both a positive Elisa and a positive Western Blot. The problem with those tests is that they are highly unreliable. Some refer to these tests as doing a coin toss (because of their ~50% accuracy). Both tests rely on the presense of antibodies against the Lyme bacteria which are not always present. The immune system only starts making antibodies after a few weeks. Furthermore, Borrelia can hide itself from the immune system causing a lot of blood tests to come back negative. Patients with a positive blood test are the minority and should actually be considered 'lucky'.
    For the Western Blot test, specific antibodies are measured. Odly enough, certain specific antibodies for Lyme are often not included in the offcial guidelines, which makes the accuracy of the test even worse.
    The CDC (Centers for Disease Control) estimates that the total amount of Lyme desease cases is 10 times higher than the current detection rate. It even admits that the Western Blot shouldn't be used as a diagnostic tool, but it is still used by most physicians.

    Buhner:
    The CDC knew for decades that Lyme was greatly underreported, but kept it a secret.

    ndnr:
    If Lyme is not treated early on, chances are increasing that it will spread to areas where the immune system is not effective or where antibiotics can't reach. For example the bone marrow or the heart, but an excellent example of such a safe spot is the brain. It also has the ability to hide itselfs from the immune system by transforming to a cyst form or surround itself by protective biofilms.
    Because Lyme disease settles itself in the brain and the central nervous system, it is known to cause neuropsychiatric disorders. For example trembling, dizziness, imbalance, word finding problems, anxiety, depression, brain fog, light and sound sensitivity, poor motor skills, headaches/migraines, dementia, neuropathy, ...
    Lyme disease can mimic any symptom and any disease. Because so many symptoms can occur, it is sometimes hard to get the diagnosis of Lyme disease. For example, it can mimic the symptoms of Heart Disease.
    The most important marker for Lyme disease is pain that comes and goes, with good and bad days. Usually there are a multitude of symptoms present that are completely unrelated. The bad days are usually caused by toxins that get released when the spirochetes get killed by the immune system.
    A lot of times psychiatric symptoms are present in combination with a variety of other symptoms, which increases the chance of concluding that it's all in the patients head.

    Buhner:
    ndnr:
    Pathologist Alan MacDonald found that 7 out of 10 brains with Alzheimers disease turned out to have the borrelia spirochete. Btw, he almost has his new research funded.
    Because the immune system that is active in the brain is not very good at recognizing infections, it is very hard to know whether it is active in the brain with a regular blood test.
    The toxins that are released by Lyme, but also the inflammation, causes encephalitis (swelling of the brain) and makes the brain more sensitive to external stimulation. This is the main cause of - sometimes extreme - anxiety in Lyme patients. Some suspect Lyme to kill serotonin receptors, which is exactly the opposite of what most antidepressants (SSRIs) do. What is known is that Lyme decreases tryptophan (precursor of serotonin). Both interventions make Lyme patients highly apathic.
    Serotonin is often referred to as the neurotransmitter that causes feelings of well-being. But it has more functions, it acts as a general messenger to improve memory, cognition, sleep and appetite.

    Tired of Lyme:
    Of course this depends on how sick the person in question is. Some argue that depseronalization is caused directly by toxins released by Lyme.

    Buhner:
    LymeNet Europe:
    Because of the unreliable tests that depend on a very weak - sometimes nonexistent - immune response, because Lyme can alter their genetic makeup and because there are so many different species of the bacteria, Lyme should be diagnosed based on symptoms alone. Lab tests are just done to confirm the clinical diagnosis.
    Patients whose immune system is completely compromised are more sick, but are less likely to deliver a positive blood test due to the lack of antibodies.

    In 2008 a documentary was made about Lyme disease. The patients presented in this documentary shows how much this disease can vary.
    Two other good docs: 1 2 (sorry, both in Dutch)
    Not all information by those so called 'experts' is correct, but at least it's something.

    LymeNet Europe:
    Besides the cyst form and the use of biofilms, Lyme bacteria can change their outer-cell-wall proteins which disguises the bacteria. The immune system continues its attack without being able to identify the invador. This causes inflammation and damages tissues everywhere.

    Lyme disease didn't get quite known until recently. In Avril Lavigne was diagnosed with Lyme disease. She was lucky to catch it early on.
    John Caudwell (English billionaire) was diagnosed with a chronic case.
    The case of Ally Hilfiger is very interesting because she was also infected in her childhood.
    Other two good explanations: 1 and 2

    A lot of people with Lyme disease don't really look sick, but can feel really sick from an infection that is potentially life threatening.
    On average, people with chronic Lyme are thought to have a worse quality of life than people with congestive heart failure.
    [​IMG]
    Source

    A lot of tics don't only carry the borrelia spirochete, but also a bunch of coinfections like bartonella, babesia, chlamichdia which all have their own symptoms. People with coinfections tend to be sicker (this is also true for people who have mercury poisoning). Tests for coinfections are usually even less reliable than the Lyme tests.

    Back to the results.
    As far as I understand, the Elispot LTT measures antibody production of T helper cells against Borrelia Burgdorferi (and other Borrelia cultures). T helper cells are part of the adaptive immune response. Its job is to identify pathogens and inform other parts of the immune system about this pathogen by making cytokines. In HIV, these are the cells that get destroyed.
    Because T helper cells have a half life of a few weeks, it measures recent exposure to Borrelia.
    According to https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/, the sensitivity of the LTT in clinical borreliosis before antibiotic treatment was determined as 89.4% while the specificity was 98.7%. In other words 10.6% false positives and 1.3% false negatives. So this test performs extremely well compared to other tests.
    My test is positive, even just slightly. So there is still a 10.6% chance that it isn't Lyme (according to this test alone).

    'Sensu stricto' means 'in the strict sense'. It refers to Borrelia Burgdorferi itself. 'Sensu lato' would mean all Borrelia species that cause Lyme-like disease. The test was positive for Borrelia Burgdorferi which is most widespread in the US. In Europe, Borrelia Afzelii and Borrelia Garinii are much more common.

    Buhner:
    The CD57 count represent a specific Natural Killer cell or NK cell which is a subset of T lymphocytes which are responsible for killing foreign invadors. The CD57 cell is uniquely attracted to Borrelia Burgdorferi. For some reason Lyme is able to reduce CD57 cells.
    It can also be used to track the progression of the treatment. The general rule is that a lower CD57 count means a more progressive case of Lyme. In general, because this rule is absolutely not 100% reliable. The count can increase because of certain infections or auto-immune disorders which sometimes coexist with Lyme. It can be used as a complementary lab test.
    HIV patients have a similar test they can perform, but in their case the CD4 count is low.
    Normal levels are around 200. Beneath 100 are highly suspicious. Less than 60 is considered as having 'Chronic Lyme Disease'. Less than 20 indicates 'Severe Illness'.
    [​IMG]
    Source
    A CD57 count of 55 (the red line) is just a confirmation of a chronic Lyme diagnosis. Anything below 100 is a strong indication of a chronic Lyme infection.

    Everything else is just the consequence of the Lyme infection.

    Ammonia
    Ammonia levels are twice the maximum levels.

    High levels of ammonia are toxic and a liver burden. Long exposure to ammonia might be the reason for the liver pain I had.
    Ammonia stimulates the NMDA receptors. NMDA overstimulation agitates brian cells, causes anxiety and can even cause brain cell death. NMDA overstimulation is related to multiple chemical sensitivities.
    Very high levels of ammonia can be dangerous.

    The cause of high ammonia can be a liver problem. Ammonia is converted into uric acid and urea by the liver and excreted by the kidneys. Since both urea and uric acid are high, it is probably not a liver problem.
    According to KDM, high ammonia is caused by the bacterial overgrowth which is constantly producing ammonia as a waste product.
    Lyme itself can also cause high ammonia levels.

    Inflammatory Cytokines
    They are all within limits, except for IL-8. IL-8 is an inflammatory cytokine. Cytokines are proteins that are among others responsible for a propper immune system response. They modulate the balance between humoral and cell-based immune responses. (see later)
    Cytokines are the main reason why people feel sick when they are ill.
    Inflammatory cytokines can pass through the Blood Brain Barrier and cause inflammation of the central nervous system.

    IL-8 is an important neutrophil activator.

    Buhner:
    Neutrophils can become neurotoxic which increases the release of certain activated immune cells. Those can enter the brain and cause neuron death.

    Soluble CD14
    Redlabs:
    High sCD14 suggests leaky gut.

    Immunoglobulin A
    Redlabs:
    Urine test
    Two things were tested through the urine test. The presense of neurotoxins and a Th1/Th2 imbalance.
    There was no testsheet included in the report because it was executed locally, even though it is explained on their website. The test is either positive or negative. Maybe other tests are being done. But in my case, those two were positive.

    The presense of neurotoxins is to be expected in Lyme.
    I've asked KDM about the meaning of a Th1/Th2 'switch'. It's means that there is an imbalance between cellular (Th1) and humoral (Th2) immunity in favor of the humoral (Th2) immunity. This is typical for chronic Lyme patients.

    Buhner:
    So, Lyme can make the immune system ineffective by shifting the immune response using cytokines. Shifting the immune response in the correct direction seems to be crucial.
    According to KDM, almost all his patients that are seriously ill have this Th1/Th2 switch.

    Metagenomics Stool Analysis (Red Labs)
    This test checks what bacterial colonies are present in your bowels.
    It makes no sense to go over all the results. The ones that are out of range:
    Conclusion:
    Fecal microbial analysis: high % Clostridium sensu strictu, Bacteroides, Odoribacter and Clostridium IV/XI; low % Bifidobacterium
    The high levels of Bacteroides causes the low ratio and indicates gut inflammation.
    The low Gram+/Gram- ratio is caused by both high Bacteroides and low Bifidobacterium.

    Bottom line, my bowels are very disturbed.
    An overgrowth of anaerobic bacteria (especially with a low Firmicutes/Bacteroidetes ratio) causes a malabsorption of calories (partly because they use it themselves). This means that it is impossible at this moment to gain weight.

    According to KDM, the surface of a football field worth of bacteria are replaced every day. Lyme has the ability to lower ones ability to reproduce bowel bacteria by about 30%. Over a long time, this can be sufficient to completely destroy the correct culture ratios. This leads to bowel inflammation which causes cytokine production (of course the ones you don't want) and malabsorption.
    Especially B12 is affected by malabsorption. According to Andreas Moritz, a vitamin B12 deficiency is mainly caused by malabsorption not a lack of B12 in the diet. A B12 deficiency can explain higher levels of mean corpuscular volume (MCV) which defines the volume of red blood cells. An MCV value that is out of range indicates anemia. If it's too low (microlytic anemia) it may indicate an iron deficiency. If it's too hig (macrolytic anemia) it may indicate a B12 or B9 deficiency.
    MCV has always been high but just in range, except for a few times.
    Alcohol is also very detrimental to bowel bacteria.

    Food Allergy Test
    This test was carried out by BioTek in the USSA.
    It uses an ELISA (Enzyme-Linked Immunosorbent Assay) test to determine allergic responses. In my case the IgG antibodies were measured.
    IgG reactions are delayed reactions, hours to days after ingestion of the allergen.
    The results are a bit surprising.

    Legenda:
    [​IMG]

    Dairy:
    Minor food allergies.
    [​IMG]

    Meat:
    Extremely high allergies for eggs.
    [​IMG]

    Nuts:
    Moderate allergies for Kidney and String Beans.
    [​IMG]

    Misc:
    Some allergies for sugar cane.
    [​IMG]

    Fruits, vegetables and fish were negative.
    All those food allergies will disappear over time.

    White blood cells

    Monocytes are out of whack. Previously they were too high, now they are too low.
    The total white blood count is - again - close to 4000.
    Lyme has the ability to infiltrate the bone marrow and distrupt (white) blood cell production. Maybe this is one of the causes.

    Normal results, but worth mentioning
    Kynurenic Acid
    Lyme stimulates dendritic cells to produce an enzyme that breaks down tryptophan (precursor of serotonin).
    Buhner:
    The indirect destruction of tryptophan by the Lyme infection causes certain substances to be released of which quinolinic acid attacks brain cells. Kynurenic acid ameliorates the effects of this attack.

    I'm confused whether high KYNA levels are good or not because they may indicate high QUIN levels.
    I think Wikipedia explains it the easiest way:
    This result indicates that something is wrong. It most likely means low serotonin (and melatonin) levels because of tryptophan degradation.

    I suspect these levels to decrease over time.

    VEGF
    Personal Consult
    What I can find about low VEGF can also cause neurodegeneration, whereas high VEGF can be an indicator for Bartonella but low levels doesn't rule it out.

    I expect this level to rise over time.

    Ferritin
    Previously: 33 mcg/l
    Ferritin is a protein that stores and releases iron. So, ferritin levels are a good indication for iron deficiency. Why my ferritin levels are suddenly normal is a mystery. I haven't taken any iron supplements.

    Vitamin D
    PubMed:
    Wikipedia:
    Cholecalciferol is inactive: it is converted to its active form by two hydroxylations: the first in the liver, the second in the kidney, to form calcitriol.

    Cholecalciferol is the form that is present in supplements. This form is converted into the 25-OH form and this form is converted into the 1.25-di-OH form (which is the active circulating hormone).
    I'm a bit surprised that my 1.25 D3 levels are much higher than my 25 D3 levels. They are almost toxic.
    High 1.25 D3 is a good thing and may indicate that I'm good at converting the inactive D3 to the active form, but it can also be stimulated by malabsorption or GI damage.

    Connection to the hair test
    The infection might weaken the body and its mercury detoxification abilities.
    http://chroniclymedisease.com:
    http://chroniclymedisease.com:
    The hair test indicates a long term mercury build up which is logical since the long exposure to Lyme in combination with mercury fillings. This immediately explains the relief of certain symptoms when taking DMPS. It limits the playground for the Lyme bacteria because one of their defenses disappear.
    On the other hand, removing mercury restores immune function (which can cause higher inflammation). And I can confirm that while some symptoms have almost disappeard, some have gotten worse. Chelation is a bit like releasing the kraken, but it's something that you have to do in order to get better. I wonder if the Elispot test would still be positive if I haven't done chelation in the past years.
    Either way, recent tests still indicate a suppressed immune system. I've taken high levels of zinc for several months, up to 150 mg (everything hihger than 50 mg can be toxic). During that time, my leukocytes were 5300 whereas they were 3080 previously. Leukocytes are now 4300, just within limits. (I've ceased all supplementation two weeks before the blood test). This was after taking 50 mg/day. This may confirm the hypothesis of Klinghardt that Lyme eliminates zinc to weaken the immune system.
    I've increased zinc levels again to 100 mg/day.

    Coinfections
    All tests for coinfections were negative, but those tests are even less reliable than Lyme tests.
    Looking at the symptoms that are related to popular coinfections, there is only one of which symptoms seem familiar. I used to have night sweats and so called 'air hunger' which are typical symptoms for babesia (a malaria like parasite). But they have disappeared.
    Maybe those symptoms are Lyme related or maybe babesia has become dormant. Either way, it's not really a concern at this moment.
    Coinfections can greatly increase the survival rate of Lyme bacteria in the host.

    Other tests
    The lactose and fructose tests that check for enzyme deficiencies were negative.

    The bike test didn't reveal anything special except that my maximum heart rate is 194, the maximum output was 240 Watt and the maximum capacity was reached because of respiratory muscle weakness.

    When did I get infected?
    The first few symptoms that are related to Lyme were massive dust mite allergies in the third grade. But that's actually not the first sympotom. I forgot something that happened when I was young and I didn't know that it might be related to Lyme disease. Lyme can cause a minor or severe form of 'facial palsy'. It usually happens in children that are bitten in the neck area (because children are smaller and lower to the ground). Facial palsy is a minor paralysis of certain facial muscles causing one side of the face to be droopy. I still have a very minor form which you can see sometimes on photos. But when I was in kindergarten, I had a 'lazy eye' on the right side which is a droopy eyelid. I had to wear these eye patches on my left eye to train my right one. Obviously, a minor paralysis caused this.
    It was around the same time that I had to wear glasses, also for my right eye.
    Lyme can stay in your body without notice. It can suddenly break out or make you more sick over time. A significant amount of people don't know when they acquired the disease.

    Treatment plan
    Since antibiotics are unlikely to work at this moment, another approach is necessary to tackle the disease.
    Priority number one is remodulating the immune system. Shifting the balance from Th2 to Th1 and strengthening the immune system. The inflammation in my gut produces a Th2 response.
    The majority of the immune system is located in the gut. Lowering allergic reactions will free up the immune system to go after the real invadors.
    By healing the gut, brain function is also improved because of the brain gut connection. If the bowel system is inflamed, the brain is aswel. Furtermore, more than 90% of all serotonin is located in the gut. It makes a lot of sense to start there.
    KDM prescribed me a combination of antibiotics and probiotics.
    The first antibiotics were Clindamycine (7 days) and Flagyl (5 days). Clindamycine didn't seem to do anything.
    The antibiotics must always be followed by a preriod of probiotics until the month is over. Then repeat again.
    I also have to take five supplements (KDM just gives supplements without explaining why, so I had to look it up. It appears that they have a Facebook Post which explains what they want to achieve.):
    Lactoferrin Complex. One of the components of the immune system of the body (mainly antibacterial, antiviral and antifungal) that is anti-inflammatory.
    Choline-DHA. Enhances the connections of neurons in the brain.
    Lypospheric Vitamin C. A type of vitamin C that is encapsulated in liposomes. Phospholipids should protect vitamin C from destruction by the digestive tract and allow for immediate delivery to the cells. Vitamin C increases Th1.
    Hydroxycobalamin (intermuscular). Activated form of B12. This one has to be injected twice a week. Lowers nitric oxide and helps detox. Great talk about the NO/ONOO cycle here. May also remove ammonia from the brain.
    Caloreen (maltodextrin). A polysaccharide that is often used as a food additive and is sometimes given to people that are malnourished. Aka, this is to gain weight.

    Medicine has to be combined with a diet that is aimed at lowering allergic reactions. The main idea is to eat something different very day for four days in a row. Then start again with day one. Everything is allowed, except for the 'extreme' allergies (eggs in my case). All food items are kind of grouped that way to keep similar allergy types on the same day.

    Flagyl caused some severe nausia for a few days and also tooth pain. But it seemed to most effective. During the whole time I took Flagyl, my stools were very dark (almost black). So I guess a lot of things were dying. I also had less pain overall (probably because Flagyl destroys cyst forms, including Lyme). KDM warned in the report that Flagyl could cause a Herxheimer reaction which happens when a bunch of toxins get released when Lyme spirochetes die. It can look like this, but it didn't happen in my case. Herxing is not all that common.

    At the end of this three month period, something strange happened. My skin became really sensitive and I had red stripes everywhere.
    This is my right side:
    [​IMG]
    A week later, all my joins were inflamed. Some days I couldn't bend my knees, later I couldn't lift my arms, then I couldn't type or lift my backpack and sleeping was very painful. Painkillers didn't work.
    After three months, I had to come back for a reevaluation. Fortunately this was the moment when this occured (I was able to come in a few days earlier).

    KDM had seen this before but never this bad. What happened was mast cell activation. Mast cells react to allergens and pathogens. Something probably changed in my bowels my immune system didn't agree with (or some pathogen leaked from my bowels). Either way, the problem was gone after two weeks (give or take).

    No new tests were performed. Everything stayed the same, except the two antibiotics were changed by another one: Normix (Rifaximin). Unfortunately this antibiotic may not be sold in Belgium (because we live in a free country), it has to be imported from Italy. This almost triples the cost of this antibiotic.
    Normix is a broad spectrum antibiotic. This means that it kills everything. Gram negative bacteria have a more complex cell wall and are more antibiotic resistant. If there are too much gram negative bacteria, it takes a long time to reach a healthy balance with antibiotics and probiotics.
    And two antibacterial and anti-inflammatory herbs (quercetin and curcumin) were added.
    I have to take this antibiotic for about a year.

    According to KDM it takes this long because all new medicine that gets developped have one or more side effects for which they do not get approved by the regulator. Wonderful right? Now all investors are hesitant to support a new product.

    So far, I seem to have good results. But I have to stay on the prescribed diet. The die off that I described before only happens rarely now which is a huge improvement. I also got rid of a lot of pressure in my bowels I didn't even know I had. I guess my gut will heal automatically if I stick with the schedule.
    Until this day, my skin remains itchy combined with some minor acne. I think it is related to the antibiotics.
    One setback happened. I lost quite some weight. I'm now at 61.5 kg (coming from ~67) which equates to a BMI of 17. I have to gain ~22 kg to have a normal BMI of 223. This will probably take some time.

    The hydroxyB12 injections didn't do much in the first three months but now it seems to be working for a bit more than a day.

    I don't know what the next steps will be. A lot of people seem to get good results with the Buhner protocol. (I've used a lot of quotes from his book in this post.) His book is really good and quite extensive. Maybe it's a good idea to figure out the protocol and discuss it with KDM. I don't think it will cure Lyme but it will probably change my Th2 response to Th1 and stop most of the symptoms. You can find a small oversight on his website.
    Personally I'm mostly concerned about long term neurological damage. The damage is similar but less severe than in multiple sclerosis. It could explain the burning and sometimes crawling feeling in my brain.
    Even though most of it is reversable, this is the most scary. Either way, I'll probably get my memory back, the dizzyness, headaches, word finding problems will hopefully disappear. Only my right eye might not cure. It is almost impossible to read anything (even with glasses) and my vision is of significantly worse quality.
    My last update included complaints about 'visual snow' and floaters. I must have missed something back then from Wikipedia, I just noticed it now:
    On the right side, it looks like there is some kind of static layer on top of the original picture. It's mostly in my right eye and I don't really notice it most of the time (because my left eye is the dominant one). It is most noticable on dark backgrounds.
    The floaters are also very typical for Lyme as it is, like the central nervous system, a protective site for Lyme bacteria.

    The twitching I was talking about:
    It is very mild, sometimes you can feel it without being able to see it. The examples here are very short (it usually takes ~10 seconds, so it's hard to catch it on camera). It occurs everywhere.
    From the information that I can find, twitching is either a Magnesium deficiency or the Lyme bacteria have infected the central nervous system.

    There is also a very slight risk of getting a heart attack (and death), because Lyme can infiltrate the heart tissue. I'm not sure if that is the case for me. I have different kind of heart related issues (palpitations - although very much less these days, stabbing and chest pain). All tests so far showed no heart block, but it's something that I have to keep in the back of my mind.

    Remember that I mentioned what I wrote in my previous update:
    Turns out NAC destroys biofilms. So, it's probably related to that.

    Next post will be more about treatment once I figured out what to use.
    I'm pretty sure a complete remission is possible, but it will take a few years.

    Cost of the antibiotic and supplements in Euro per month (including taxes and sending):
    Normix (200 mg - 3x/day): 87.80 (33.28 is the original price)
    Bio-Kult (2x/day: 8.5
    Hydroxycobalamin injections (10mg - 2x/week): 22
    Lypospheric Vitamin C (1 mg - 3x/day): 94.02
    Lactoferrin Complex (360 mg - 2x/day): 40
    Choline-DHA (500 mg - 2x/day): 26
    Quercumin (1000 mg - 3x/day): 58.5 (This is a combination of curcumin and quercetin.)
    Total cost: about €335/month
    This only includes the things prescribed and not the cost of all the other supplements.

    Current supplement list:
    Morning
    Zinc Picolinate 100 mg
    Lithium Orotate 4.6 mg (every 3 days)
    Pancreatin 750 mg
    L-Theanine 200 mg
    Green Tea Leaf Extract 500 mg
    Glycine 500 mg
    Selenium 200 mcg
    Alpha Lipoic Acid 150 mg
    MethylB12 1 mg
    B-Complex
    Milk Thistle Extract 150 mg
    Taurine 1 g
    Magnesium Citrate 166 mg
    Potassium Gluconate 99 mg
    5-HTP 100 mg

    Noon
    Vitamin D3 5000 IU (every 2-3 days)
    TMG 500 mg
    Lecithin 1200 mg (420 mg Phosphatidylcholine) (every 4 days - on the day when I may eat soy)
    B6 250 mg
    Vitamin E 400 IU
    Omega 3 320 mg

    Evening
    Copper 2.5 mg
    Alpha Lipoic Acid 150 mg
    Ashwaghanda 450 mg
    Melatonin 1.5 mg
    5-HTP 100 mg

    red = remove
    orange = (probably) replace

    I'm back on 100 mg zinc which seems to be the tipping point. I feel better on 100 mg than on 50 mg.
    I know this dose increases the chance of prostate cancer, but that's a risk I'm willing to take.
    High levels of zinc can knock off copper. That's why included a low copper dose.

    Afterthoughts
    The amount of Lyme disease diagnosis made differs between countries. For example, In The Netherlands has about 129 (2009) new cases per 100000 inhabitants are recognized each year. For Sweden this is 69 (1995), for Slovenia this is 155 (1997) and for Belgium this is 10 (2012).
    I'm either living on sacred land, or this disease is greatly overlooked in Belgium.

    This is how you loose ~20 years of your life which I'm not gonna get back.
    Anyways. Persistence pays off, even when you get ignored.

    At least it is something that most people kind of understand. Even though it's a known disease, there is still a lot of misunderstanding.

    I've read two books so far and I've ordered five more books about Lyme (and 1 general book about diet and auto-immune disorders which might be handy).
    Storl, Wolf. Healing Lyme Disease Naturally: History, Analysis, and Treatments. North Atlantic Books, 2010.
    McFadzean Ducharme, Nicola. Lyme Brain: The Impact of Lyme Disease on Your Brain, and How To Reclaim Your Smarts. BioMed Publishing Group, 2016.
    Singleton, Kenneth. The Lyme Disease Solution. BookSurge Publishing, 2008.
    White, Shelley. Cannabis for Lyme Disease & Related Conditions: Scientific Basis and Anecdotal Evidence for Medicinal Use. BioMed Publishing Group, 2015.
    Ballantyne, Sarah. The Paleo Approach: Reverse Autoimmune Disease and Heal Your BodyCBS News . Victory Belt Publishing, 2014.
    McFadzeanm, Nicola. The Lyme Diet: Nutritional Strategies for Healing from Lyme Disease. BioMed Publishing Group; Edition Unstated edition, 2010.

    References:
    Buhner, Stephen. Healing Lyme: Natural Healing of Lyme Borreliosis and the Coinfections Chlamydia and Rocky Mountain Spotted Fever. Raven Press, 2015.
    Horrowitz, Richard. Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease. St. Martin's Press, 2013.
    http://library.lymenet.org/domino/file.nsf/0/c8237a2ae855bac6852567c700120021?OpenDocument
    https://myheartsisters.org/2011/03/14/mystery-diagnosis/
    http://www.lymeneteurope.org/info/the-complexities-of-lyme-disease
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474947/
    https://www.ncbi.nlm.nih.gov/pubmed/23091571
    http://ndnr.com/neurology/neuroinflammation-lyme-disease/
    https://www.researchednutritionals.com/library/lyme/everything-you-wanted-to-know-about-cd57/
    http://www.tiredoflyme.com/cd57.html
    http://chroniclymedisease.com/mercury-and-lyme-disease
    http://www.tiredoflyme.com/deperson...n-from-lyme-disease-and-its-coinfections.html
    http://lymeconnection.org/news_publ...-brain-with-psychiatrist-dr-robert-bransfield
    http://cassia.org/essay.htm
     
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