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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    Lactic Acidosis from Probiotics

    Hi, thanks so much, you are a star! That's what I thought. I assume you have the custom probiotics Bifido only? I am flying to Hawaii in 2 days and will order them for delivery there! What is the other stuff you are taking? Never heard of it. I have a CBS upregulation, so have to be careful with...
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    Lactic Acidosis from Probiotics

    Hi, I also suffer from D-lactic and Lactic acidosis, with lower sodium and bicarbonate levels in my ABG test. Taking enteric coated Sodium bicarbonate pills currently to deal with this. Sushi, I realise you found some sort of solution for this, can you pls share it with us? It woul dbe very...
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    HELP: Has anyone been able to resolve their CBS upregulation problems?

    Hi, I thought my bouts of anemia would be over once my lovely tapeworm finally got out. Unfortunately, not the case. Levels recovered and now dropped again. Somewhat worried about a nwew worm coming up. Will go for another rounds of treatment. My ferritin is in the normal range, but I might want...
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    Methylation - hair loss

    Hi What is the name of your iHerb Thyroid supplement? I ordered Phyto ADR now for my adrenals. Let's see how that goes. Some of the ingredients help as well with thyroid. I don't take (yet) DHEA or pregnenolone. I also have to be careful with DHEA, as I seem to have some enzyme...
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    Methylation - hair loss

    Here I go. I obviously mean 30mg of zinc, not 300mg.... Also, I am taking a compounded amminoacid based on Metamatrix, without phenylalanin obviously. 1 time per week currently a 1000 mcg methyl and a 1000mcg adenosyl injection. Now I hope I have covered it all......
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    Methylation - hair loss

    Hi Rydra, The doc who is treating me now is an environmental disease doctor at the clinic who washes my blood. He was also the one advising on the genetical testing. MDR1 si the Multi-Drug resistance gene, which, if you have a polymorphism like me, means that medicine has a difficult time...
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    Methylation - hair loss

    And yes, BH4 works for me. I take very small dose (I 100mg tablet a day) and my levels have gone up from 1.8 to 2.4 (Ref > 1.9). Will continue to take a second pack I guess (I just need now to find a doc in Singapore to prescribe, but German doc will give me a reference - after much convincing...
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    Methylation - hair loss

    Got some very good news today! Latest ATP measurements show ATP of 2.6 (Ref > 2) :victory: At my lowest, it was somewhere around 1.2 or so. My doc believes it is down to the Apheresis that removed a lot of the toxins out of me! Just need to keep it up now, am a bit worried because of the...
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    Methylation - hair loss

    Hi,sorry for not having been around for a while. I have quite some updates/progress. First of all, I have managed to find out a big piece of my puzzle, the main reason apparently why all my lyme's treatment did not really go anywhere. Tapeworm! Gigantic! Lost 17kg in a short space of time and...
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    Yaski SNPs - questions

    Hi, I have been supplementing with a customised mix of vitamins and supplements based on my Yasko SNP results, as well as my Metamatrix results (which tie up very well to the SNP results). In addition, I have been on the 8th blood wash and have also undergone EDTA and DMSA chelation. All metals...
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    HELP: Has anyone been able to resolve their CBS upregulation problems?

    Hi Dan, Yip, our profiles look very similar. Vanadium was suggested by Metametrix due to the insulin resistance. They suggested 200mcg per day. They are not doing a Plasma or RBC Vanadium status, but i had my hair tested and the Vanadium levels looked Ok-ish, so won't be taking this kind of...
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    HELP: Has anyone been able to resolve their CBS upregulation problems?

    Hi Danny, I have exactly the same issues! MTHFR mutation and CBS up regulation. I also lost a lot of weight (17kg!)in a couple of months, as my body was also using my muscles for fuel. Found out that my lactate/pyruvate ratio is sky high and I have the beginning of insulin resistance (albeit...
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    BH4 - looking for an expert

    Hi, My Yasko SNPs are back and unfortunately, it confirms a heterozygous polymorphism for MTHF and CBS up regulation, as well as for NOS. Unfortunately, I am very depleted on BH4, as it was confirmed by the ION test, as well as the status of my BH4 from a German lab. I have been prescribed a...
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    Apheresis - feedback

    OK, got my results from the first two blood washes back a few weeks ago and while they have not tested for all I have been asking them (useless....), some results were surprising. The least surprising were the heavy metals, aluminium again leading the charts. They also picked up some titanium...
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    High Citrulline Level

    High citruline usually means you have nitrostative stress, which needs to be treated. Typically, this is treated with B12 supplementation, but you seem to be OK there. Pall describes quite well how nitrostative stress is treated. Maybe somebody can give you feedback as to what needs to be...
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    Apheresis - feedback

    also, I do get Glutathion iv's twice a week and in between I do take S-Acetyl-Glutathion. Glutathion in te cell has gone up above minimum levels and is looking better, but I will def check the oxidised Glutathion. Will keep you posted.
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    Apheresis - feedback

    Thanks Rich. Will test mein Glutathion ox on Monday to see if I suffer from the same problem. I do take the Pure Encapsulation B complex which Freddd recommends (with Methylcobalamin, Metafolin). Would that be sufficent B's? It seems like B2 is rather low, so I ordered the active form in...
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    Apheresis - feedback

    Hm, thanks. I know that metals can also block enzymes of the methyliation cycle, ie Aluminium blocks the BH4 synthesis, plumb can also block some enzymes. Would it then not be easier, ie in my case where GST M1 is theoretically functioning, but not operating due to lack of glutathion, to first...
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    Apheresis - feedback

    So far I know, I have one upregulated Cytochrome (CYP1A2), but only 3 out of 8 tested. GSTT1,GSTM1 normal, but GSTP1 reduced. NAT2 normal and suspected polymorphism in SOD2. This is whatI don't understand. GST M1 is usually reponsible for heavy metals detox and that is supposed to be OK for me...
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    Valcyte + Famvir Success with only mildly elevated titers

    Not sure how testing is done in the US, but exactly because of the insensitivity of the antibody testing or PCR, in Germany many doctors are using the Lymphoccte Transformation Test, which basically is the level your lymphocytes are reacting to certain antigens, ie my antibodies showed that my...
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    Apheresis - feedback

    Will let you now the outcome of these two apheresis and what the doc is suggesting, but yes, it can become quite cost prohibitory. One lady had to have 95 of those. Obviously, she was on the brink of dying and the insurance paid. So maybe have a few and then switch to more conventional therapies...
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    Apheresis - feedback

    Hey, yes, it is a private treatment. Will try to get it re-imbursed though and will use the results (plasma, genetical polymorphisms, etc) to submit the doctor's report to the health insurance once I have the treatment plan set out. It will be a bloody fight though, as somehow in Germany, CFS is...
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    Apheresis - feedback

    I am in Germany.
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    Apheresis - feedback

    Hi, I just had two apheresis sessions this week, one on Tuesday and one today. Generally, the procedure is quite easy, nothing to worry about. You are lying comfortably in a bed and can watch TV. Procedure takes roughly 2.5h, depending on the amount of plasma that is to be filtered, which...
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    Help! Cobalt issue

    Oh, so far no artificial joints, screws or anything metallic, other then a vortex port, that was implanted 3 months ago, which is titanium. In any event, I hope the apheresis takes care of the cobalt for me too.
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    Help! Cobalt issue

    Hi, thanks for the repies. I am afraid that cobalt has to do with B12. http://www.natural-health-information-centre.com/cobalt.html The B12 molecules are bound to colbalt and hence the risk of building up too high levels, which can become toxic. This is an issue here which is monitored...
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    Help! Cobalt issue

    Oh joy! My environmental doctor has run some blood work on metals and I came quite positive for cobalt. Level at 13.6mcg (ref: <0.9 mcg). I am ordered to stay away from B12 for now, as I seem to have "overdosed". Problem is, if I don't take it for 2-3 days, I do feel bad and taking the B12 makes...
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    Methylation pathway panel & apheresis

    Hi, I am scheduled for my first two apheresis sessions next week and I am now not sure what to do about my methylation pathway panel and nutreval test. Should I get it done beforehand or would results likely be impacted by the treatment, ie detox changing reactions in the methylation pathway? I...
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    Methylation a problem but protocol doesn't help - what to do?

    Hi Nina, By the sound have similar problems that I do. Adrenal fatigue, KPU and sulfuration issue (high serine, low cystathione), low BH4 Adrenal fatigue: This is very important to consider, as it can impact immune system function. Good guidline on how to treat it can be found on...
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    Transsulfuration pathway - help with interpretation required

    I looked at their website and the mention something about collecting data on what they find in the plasma and publishing it. The website is unfortunately in German. http://www.inus-world.de/de/privates-apherese-und-dialysezentrum Will ask the doctor if they have their material in English as...