Apheresis - feedback

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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 and figured, the vortex port implanted in my chest might be leaking the metal (it's made out of titanium), so they tested titanium in blood, as well as my TNFa and IFg response to titanium and bingo! Apparently, the titanium metal in my body is letting my immune system go balistic, even though my genetical inflammation marker went back being a Grade 1 only (so am not somebody who is genetically over inflammatory). So it was decided to remove the titanium asap. It was like somebody switched a light on. Felt so much better (in the great scheme of things). Other then that, they found elevated immune complexes, so am now having my complement system checked out for genetical defects. Positive antibodies for EBV, with EBNA and all positive, so activated. Furthermore, positive rickettsia. No trace of lyme in the plasma, at least not in Germany (last time it was also IGENEX who found that out). Positive mold (Claudosporium and Aspergillus). So all in, good to know, but am a bit doubtful of how much heavy metals the apheresis can actually remove. Will speak to the doctor next week to find out the exact number of blood washes he thinks I need to have, as not sure the 4-5 he indicated will really solve the problem. Downside, it also removes good metals, so it completely crashed my iron status (which the doctor forgot to mention). Having 2 more sessions next week.


Apart from that, I have done a full ION (incl 40 plasma amino acid), porphyrin/neopterin-biopterin, hair abnalysis as well as GI tract analysis. Received all results, apart from the GI analysis. Bought the metamatrix laboratory evaluations book, which has 600+ pages and is a bit overwhelming for the start. Metamatrix has good recommendations on supplementation, but am not sure that all is correct/advisable. For example, the found low level of Phe and Tyr, but a high Phe/tyr ratio, which also coincides with the earlier urine amino acid panel I was doing, which also detected low levels of BH4. Metamatrix is now suggesting a high Phe supplementation, no Tyr, but I am worried that this will only accumulate Phe and will ot lead to a conversion to Tyr, due to BH4 status. I had a doctor prescribing me a course of BH4, but will need to find a clinic which can diagnose this for me and put me on a regular supplementation, as I assume that 1 months worth of BH4 will not cut it.

Before taking the test, I was 4 weeks off of any supplements, just in case. What I am really surprised, is that I do not seem to be lacking any B Vitamins or folic acid. None of the markers came up. Does that mean there is 0 methylation going on? My biggest problems seem to be with amino acids (Plasma).

Low:
*Lysine,
*Methionine,
* Tryptophane,
* Phenylalanin,
* Histidin,
* Threonine,
* Alanine.

*Zink, Selenium, Copper, Magnesium, Chromium, Vanadium, Carnitine
* low Sulfate

high:
* Taurine,
* Glycine
* Serine,
* Sarcosine,
* Serine,
* Proline,
* -Alanine
* 1-Methylhistidine.

* High Lactate and -Hydroxybutyrate, high a-Ketoglutarate, Positive oxidative Stress: High Lipid-Peroxidase and 8-Hydroxy-deoxyguanosise
* High Neopterine and Biopterine

Positive for Porphyria

Hair analysis positive for Barium,Zinn, calcium, Magnesium, Copper, Strontium, low lithium, low germanium and zirkonium. According to the Metamatrix book, high Calcium in connection with high Magnesium, high Strontium and high Barium indicates a negative Calcium Balance. Strangely, in a 24h urine test I have been doing, calcium level was elevated. Vitamin D3 status is at 45, so not quite that bad, so there seems to be an issue with the PTH?

Hair loss still very bad. Having hormones now tested in 24h urine, including ft3 and ft4, ths and sex hormones, cortisol, etc.- as apparently results seem to be much better then in blood.


Rich, is there any chance you can have a quick look at my ION results and let me know what you think? Am keen on having the vitamin/ amino acid mix done by my pharmacy as soon as possible, to start supplementing the methyliation cycle.
Unfortunately, my Yasko SNP test is not back yet, but don't want to wait for that, as it seems to take ages.

Thanks so much.
 

richvank

Senior Member
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Hi, Bianca.

Sorry, I didn't see your post of October 2 until just now. I was in Sweden giving a seminar then, and was not following the PR forums.

By now you have probably long ago made decisions about your mix and have gotten it and have been using it. How are you doing now?

If you still want me to look at your ION results, please email them to me at richvank at aol dot com.

Have you done more blood washes? If so, how are the results coming out?

Best regards,

Rich
 
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BiancaS were you a smoker? Or did you eat lots of green salads? Cadmium is in cigarette smoke. (John Johnson ithyroid.com says it is in tobacco leaves and can also be found in people who eat a lot of salads). It is a copper antagonist so it can make you hyperthyroid. Have you run a thorough set of thyroid tests? It sounds like such a peaceful test. I know I have a lot of fibrin in my blood if nothing else and would love to have it just filtered and gone. Thanks for sharing.
 

snowathlete

Senior Member
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I dont understand all of this thread, but it absolutely FASCINATING!

From what i can gather, your body should normally get rid of all these toxins, but many people with ME/CFS find that it doesnt.

Is there an easy way to tell if your body is effectively getting rid of toxins? Like maybe some simple chemistry tests on urine or something like that?
 
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Hi, Sandra.

I'm most familiar with those that are included on the Genovations Detoxigenomic Profile. They include polymorphisms in eight of the Phase I cytochrome P450 enzymes, as well as the COMT, several in the N-acetyl transferases NAT1 and NAT2, two of the glutathione transferases (GSTM1 and GSTP1), and the SOD1 and SOD2 superoxide dismutase enzymes. There are no doubt others as well, but these are the ones for which characterization has been available over the past few years.

Best regards,

Rich
Rich, BiancaS (like me) has two COMT polymorphisms. I am afraid of chelation and this sounds much like it. My doctor wants me to do it. I have been interested for some time in getting CYP genetics looked at since I am sensitive to most (all?) drugs. Where would one get this Genovations Detoxigenomic Profile?
Thanks
Rydra
 

richvank

Senior Member
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Rich, BiancaS (like me) has two COMT polymorphisms. I am afraid of chelation and this sounds much like it. My doctor wants me to do it. I have been interested for some time in getting CYP genetics looked at since I am sensitive to most (all?) drugs. Where would one get this Genovations Detoxigenomic Profile?
Thanks
Rydra
Hi, Rydra.

Looks like it's available here: http://www.healthremedies.com/detoxigenomic_profile_genova_diagnostics.html

Nowadays, it would be cheaper to run the 23andme.com genotypes panel, if it has these SNPs on it. Sorting that out would take some work, though.

Best regards,

Rich
 
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Thanks, Rich. That looks like it gets you quite a few P450 genes for a reasonable price. Other labs want $1500 and only map every possible mutation of only 3 of the P450 enzymes.

Rydra