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

Raven,

What kind of test did you have to get this? Is there a link to read more about it?  Was it something you had to do special or was it a simple blood or urine specimen?

Also, do these "mutations" correct with time or are they something permanent?

Maybe a link would give me all of the info I'd like to know about your testing results.   

Thanks.  I'll be sure to follow this thread. 

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Will check in as I read and understand more. This is a genetic blood test for the Methylation cycle genesi and how they are functioning.

Here is the link:

http://www.holisticheal.com/store/home.php?cat=124

Genetic defects in the methylation cycle are permanent. The testing is to see what specific supplementsi/foods are needed to "bypass" or compensate for the defects. I found this news to be very comforting. I have already felt the benefit of using some of the more generic supplementsi like:

Metagenics Folapro 1/4 tab

Metagenics Intrinsic B12 w/Folatei 1/4 tab

Phosphytydl Serine

Phosphytydl Choline 

Hydroxycobalmin B12

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

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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

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CPNi pcri and antibody positive , treating MSi, CFSi, TMJ, trigeminal neuralgia, IBSi neutropenia, pus found in facial bone, Doxyi 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi pulses each month.

Raven, you wrote

"Genetic defects in the methylation cycle are permanent."

Can you document this? Can you also document that these are "genetic" defects and not genetic damage from infectionsi?

Jim K. wrote that he gets the basic concept of all this. I do not, and I have been following Rich V.'s study for years.

It reminds me of how the scientists claimed they had mapped the human genome. Trouble is they thought all the "empty" spaces were "junk" DNA. Turns out that was wrong.

I have a pet joke. Two scientists called on God one day to tell him they could now create life.

God says, "Great! Let's see it."

The scientists leaned over and picked up some dirt.

God says, "Hey, get your own dirt."

For now, I will continue to focus on treating chronic intracellulari infections rather than genetic defects or vitamin supplementation - another area vastly underestimated in its complexity.

Paula Carnes

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Paula Carnes

From what I understand, these are hypothesized defects in methylation done through inferential tests. None of this has been subject to rigorous large scale testing. However, it does appear by the patient reports that having a more specific notion of what the problems might be has explained why, for example, pure B-12 alone hasn't been useful for some, but when combined with folates or other supplementsi it "fills in" a metabolic gap that makes for better use of the supplementation. The proof is in the pudding, i.e. if it increases energy, helps shorten toxic reactions, etc. Rich K's version is a more generalized approach geared at what to do if you can't do the testing, but want to cover the bases of possible methylation problems. It's all empirical here despite the tests: does it help or not.

That's why I'm interested to watch from here and let a very experienced observor, Raven, give us her report. I wouldn't expect hugely noticeable results from those early in CAPi treatment who are so flooded by toxicity that minor but significant changes would be unlikely to be noticed in the flood. Raven is much clearer, infecion-wise, and more likely to be able to report shifts in energy or detox from the use of the data here. At least that's my thinking about it.

I do agree with Paula that for most, knocking down the infection is a priority. But we also have a bunch of people who are in the first phases of the CAP and getting really overwhelmed. If, for some, this is a result not of the treatment per se, but a function of their on inherent detox difficulties, it certainly would be nice to have some additional things to look at that might tip the balance in their favor. We know, from Dr. Stratton's work, that Cpni and secondary porphyriai can create antibodies to B-12 and require injectable levels of supplementation to overcome. I required this for example. But if methylation defects mean that even these levels of B-12 can't be properly utilized, then having some different forms of supplementation could make a real difference. 

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

Raven,

At last, the long-awaited results!  This is very intriguing to me, too.  I have begun reading on Rich K's site and have ordered his recommended supps for general treatment.  It will do until I can afford the Yasko test.

I wonder if there is a specific mutation for those of us who cannot tolerate alcohol. 

Thanks for sharing and best wishes for your health!  :)

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

I have been reading the Yasko book Genetic Bypass for more than a few months. I became curious about it after hearing about the use of supplementsi and diet to help the methylation cycle. I became even more convinced of it's validity when I talked to my doctor about it. He goes after every angle and leaves no stone unturned. He has come up with some very valuable adjuncts to my CAPi treatment. Like Iodoral!!! So he has also read Yasko's book and together we will try out some of these approaches. He sent me the Rich K. web site for the "cover the bases" set of supplementsi. I noticed a diference in energy the first two weeks after I began taking them.

My personal theory is this: Something about my genetic makeup made me predisposed to a whopping Cpni infection (as well as others.) I have been very successful in treating the infectionsi but I still have my unique genetic profile that has some weaknesses. What if I could compensate with diet and supplements so that I am not so vulnerable to infection? Yes, this is the goal in my opinion!!! I still have viral infections that are lurking.

I do not want to end up like my father. He wasted away with Cpn induced Alzheimer's. He finally died of heart failure at 86---after living 10 years as a zombie with pale skin marked by inflammationi. He was a vital strong man who worked hard all his life. But he was vulnerable to Cpn--first he had horrible hemorrhoids that required surgery,terrible gum disease, high blood pressurei, insomnia, alcoholism and then Alzheimer's with heart failure.

So I will look under every stone to find whatever I can use to live a long and healthy life.

I agree that Cpn and other infections must be addressed. But we must know why we have become so vulnerable to the bug in the first place. I believe the answer is in our genesi.

And, yes I am taking many different types of B12: Cyanocobalamin injections once a week, Methylcobalamin 5mgs once a day and Dibencozide Coenzymated sublingual 8mgs a day.

And since I have been taking more B12, I do see more of the moons peeking out in my nails.Thanks for asking Janice.It would be a waste if I was taking a supplement and I wasn't getting the full benefit just because I wasn't taking enough. So I am glad to have this bit of information.

Raven: 98% well and going for 100!!!!

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

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On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

Kitkat, Would you be willing and able to post the Rich K. website link on this thread for me?

Thanks, Louise

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Louise  CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 12.5mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Glutathione Depletion—Methylation Cycle Block Hypothesis: The Simple Approach
developed by: Richard A. Van Konynenburg, Ph.D

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Thanks for sharing, Raven!  I'm hopeful for good results for you.  My friend has been following her results from the Yasko testing for a few months now and seems to be having improvement.  I'm still planning to do it when I can as well.

I agree wholeheartedly with you that it makes sense to look for what underlying predispositions led us to get chronically ill in the first place.  If we can fix those problems even a bit it could help us get healthy and prevent us from going through this all over again. 

It's very interesting to me personally that Yasko is working primarily with the autism community as I've just discovered that I have Asperger's along with others in my family.  No one would guess it about us unless they knew what to look for.  We're considered "high functioning" and seem just a bit odd or eccentric in some ways.  I wonder how many others like us are out there who don't even know they're on the autism spectrum.  I'm wondering what our autism genesi might have to do with our chronic family illnesses and how understanding it all might help us get healthy again.  Autism leads to increased susceptibility for infection, and there are theories that autism may be caused by infection in the first place.  Maybe Yasko's work will prove to be a helpful piece to that puzzle.

Good thoughts for your continued healing!

Best,

Marysia

CDC Lyme Western Blot positive 02/06, Cpni, HHV6, and EBVi positive 03/08; Currently taking Bicillin IM, Azithromycin, Minocycline, Plaquenil, weekly Diflucan, and most of Wheldon/Stratton protocol supplementsi as well as attempting monthly Tinidazole pulses.  Calcium pyruvate seems to be helping mitigate die-off symptoms from treatment.