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genetic testing results
By kelly58
Created 07/23/2008 - 11:26am

  • Cpn Protocols Compared
  • Chronic Fatigue Syndrome

Hi everyone,

After a suggestion from dr. powell, i decided to spend my 'economic stimulus' check on the genetic methylation panel from amy yasko's website. i went into it not expecting anything, but thought it would be helpful to know exactly what i am dealing with in terms of my dna. really i was just too curious NOT to get the test done, so i went with it.

I just got the results back after about 7 weeks and am wondering if anyone here has done this and what the results are, and whether they have seen any progress after supplementing based on their results. they are very hard to decipher on your own so i am going to see dr. powell and have him help me figure it out. from what i can tell on my own though, it explains why i have had restless legs since i was a kid b/c i have a mutation in the gene that produces dopamine which causes my body to have less dopamine and serotonin. it also is helpful in letting you know what kinds of B12 can be used effectively in your body. i also seem to have this dreaded CBS upregulation that causes nutrients to be sucked out of my body without being used effectively. bummer.

if anyone has had these results sent to them, i would love to discuss it. or if anyone wants more info on it, feel free to ask me! i'm just figuring it all out, and am trying not to completely buy into the entire thing right away as i know it is a very new avenue of treatment. and the amount i would have to spend on the supplementsi [1] suggested is a bit out of control!

 

 

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Gearing up to starting abxi [2]i [2] protocol from Dr. powell.

Initial diagnosis of Interstitial Cystitisi [3]i [3] (july 06), progressed to all over falling apart syndrome within the past year. Current supplementsi [4]i [1]/meds: sublingual B12, ursodiol, Niacini [5]i [5], NACi [6] 1200 m

‹ cholestyramine-pms has arrived [7] NAC › [8]

Hi Kelly, I am also waiting

Submitted by raven on Wed, 2008-07-23 17:59.
Hi Kelly, I am also waiting to receive my results back from the methylation testing. I was reading Amy Yasko's book Genetic Bypass and found that unless I went for the testing, I could not apply the specific principles she outlines in her research. I am a big believer in nutrigenomics---how our unique genetic profile interacts with the food we eat and the supplementsi [1] we take. This testing makes a lot of sense. I am also a patient of Dr. Powell. I know he will be able to interpret the findings for me. As for the cost of the supplementsi [4], Dr. P. should be able to help you there as he usually knows how to get the most bang for your buck when buying supplements. I have been able to order the Metagenics Folapro and the Intrinsic B12 online. Will post a blog when I get my results. Yes, I broke open my piggy bank too to pay for it but I think it will be worth it. Raven CAPi [9] since 8-05 for Cpni [10] and Mycoplasma P. for MSi [11] and/or CFSi [12] Also EBVi [13] and HHV6

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Feeling 98% well and going for 100! Still testing + for Cpni [10] since June '08.CAPi [9] since 8-05 for Cpn and Mycoplasma P. for MSi [11] and/or CFSi [12]. Also EBVi [13] and HHV6 NACi [6], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [14] and Methylation supplementsi [1]

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Here’s a link to a

Submitted by cchase on Wed, 2008-07-23 21:31.

Here’s a link [15] to a website that does a very good job describing the methylation cycle and what the genetic testing results from Yasko’s panel mean. 

Chris

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CFSi [12] since 1/07. Pall anti-oxidant protocol since 8/07 with IM hydroxo-B12. Dx 3/08: Cpni [10], EBVi [13], CMV. Valtrex since 3/08. CAPi [9] since 4/08: Biaxin 500 mg BID, NACi [6] 1200 mg BID, Flagyli [16] 500 mg BID pulse every 3 weeks. 

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Kelly58, Raven, and CChase,

Submitted by Louise on Thu, 2008-07-24 06:27.

Kelly58, Raven, and CChase, I am quite curious about the methylation cycle as I have been a canary in the mine shaft of life.   Early I learned to adapt to this by avoidance of this and than and starting early with supplementation and whole foods approaches in my early 20's.  Yet with all the health enhancing lifestyle choices I have made and advocated personally and professionally there were always a few links missing.   Chronic persistent intracellulari [17] bacterial infectionsi [18] were certainly a large missing link.    Still I am living with moderately elevated liver enzymes since the start of CAPi [9], have been screened for the liver viruses and CA and that is all negative, but it gives me pause to consider if this methylation process may be challenged in my system.  I have over my past 20 years treated gliaden sensitivity emperically based on family knowledge.  Several screenings aong the way, produced negative results but I was being religiously adherent to the gluten/gliaden diet protocol so that tohse results could be expected at that point .  I had blood and xray evaluation but not tissue bx.     Recently I had a result during a saliva analysis which revealed gliadin Ab which finally confired that yes I do have some form of reactivity regarding that substance.

Thanks Chris for posting that link, I will take a look at it and see how my reading of it goes.

I am happy currently with my progress on CAP, has been but a year now and I am a changed individual.   Sure would be good if I could get my liver inflamation back down to a more acceptable level more in line with my first few elevated liver screening tests.   Talked several times with my provider regarding Abxi [2] vacation, I am on the line of justifying one, expected one, wrapped my thinking around that,  then was not required to take one as I had become very stable the elevation levels of the lab values.

I have dug in exploring and know that Celiac Disease can be one of the "unexplained"  cause of elevated Liver enzymes and that doxyi [19] in some people for some "unknown reason" causes same some people too.  So for now I can sit on that reason but the fact is knowing why does not really make it better!

As treatment. I have been taking large doses of Syllimarin first in a special formulation with other anti-inflamatory herbals for several months and now as a single herb (the formula was mega expensive from provider).  Not really convinced that it was the cause for the plateau but am willing to continue it.

So a dysfunction in the methylation cycle could this be a contributing addition to my combination cause for elevated liver enzymes?  The sorry thing is that I had no liver profile drawn before starting CAP as a baseline and really that may have been a good thng in disguise, I may not have been given the initial scrpt of doxy.   Just no real baseline data, I was on high dose doxy for 2 months before liver enzymes were drawn and they were climbing.  Now they have been at a  documented level for the past 5 months.

I am very sensitive to my porphorins, I can check postitive for much of the list in the getting started page reactions and remedies.  I treat these symptoms with intermittent cholestyrmine use and that has made a huge difference in my symptoms and enjoyment of life and functionality. 

 Last summer I came accross the Pall protocol, I believe that he has book?  I did not have the energy to take a look at that, is his work related to the methylation cycle?    If I could see a connect of such symptoms to myself I would consider, at this point, adding a few more neutraceutical approaches my treatment approaches.  Particularly if I could bring up my energy level for everyday life a few more notches.  My infectious disease panel was remarkably negative save CPni [10] and Bb, my EBVi [13] was inactive other viruses negative, one life partner for the past 40 years may say a little for manogamy perhaps.  My thyroid has been tested and trialed on T3 and really it is still remarkably OK.  I have added iodine and D3 in therapetic doses and am so much better.  

Still CPn and Bb are major postives and sucked the life out of me and I want more functional energy in my life.    Perhaps the methylation cycle is the next avenue for my personal exploration.

So I would ask what signs suggest a dysfunction in the methylation cycle in general? 

This may be a huge question and the answer may be, read the book. But for anyone wanting to reply I would sure appreciate a little spoon feeding to stimulate my taste buds!

Again thanks for the thread and the link,

Louise

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Louise  CFSi [12],CPNi [10]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [20] +fattyEndotoxins HS PRN, Wheldon CAPi [9] 6/07,all supps, Doxyi [19] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

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This whole thing is

Submitted by Jim K on Thu, 2008-07-24 08:14.

This whole thing is complicated, as Dr. Stratton (see original patent materials) found Cpni [10] infection causing antibodies against B-12 which may be in addition to the methylation problems some of us have genetically.

It has been discovered that one important effect of this secondary porphyriai [21] in some patients is the production of IgM and IgGi [22] antibodies against coproporphyrinogen-III. These antibodies cross-react with Vitamin B12 (cobalamin) and can thus cause a deficiency. Vitamin B12 supplementation (e.g., parenteral cobalamin therapy) can remedy the deficiency.

And Louise, probably one of the biggest sites for infection by Cpn is the liver, which is also one of the biggest producers of hemei [23]. The latter makes for some of the worst porphyria as well as the elevation of liver enzymes, especially when Cpn and the host cell is killed. I was fortunate not to have elevated liver enzymes, although I was quite certain, given tenderness and other liver symptoms, that this was a main source for infection. I did the injection of B-12 route three times a week, which helped me considerably the first two years of treatment. Does not seem to do much now.

I too am curious about the methylation problems. As we get more experience treating Cpn related diseasesi [24] it's clear that there are subsets of us who have a great deal of difficulty managing the CAPi [9], and I'm sure this is due to individual differences in detox capacity as well as genetic susceptibility to the infection.

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CAPi [9] for Cpni [10] 11/04. Dx: 25yrs CFSi [12] & FMSi [25]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [26] 1000mg/day pulses; Vit D2000 units, T4 & T3

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Hi Kellywhere can this

Submitted by ruthless1 on Thu, 2008-07-24 12:38.

Hi Kelly

where can this testing be done, blood? lab?

 

Thanks

r

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CFIDSi [27]/ME 32 yrs, FMSi [25], IBSi [28], EBVi [13], CMV, Cpni [10], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [1] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [16]/day-3 days

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