Topic: Need recommendations for good ND on West Coast ASAP (also: methylation Q's)
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Hi all....
I will be travelling to the West Coast this Thursday...I realize this is late to make any apointments with an ND, but I might as well try, and see if there are any cancellations. I would like to make some phone calls tomorrow, or even tonight since it is still early there now.
If nothing's available, I may even fly back out there again in the coming weeks or months, so I still need recommendations.
I live in the middle of Indiana, so I have to fly almost anywhere I go with this disease.
I am sick of messing around with this disease.
I am especially interested in the ND's that will do blood tests to see if my methylation is blocked, check Phase I and Phase II detoxification, my genes.....and make recommendations based on the results.
I need to explore these areas, because whenever I take prescription medicines, I slowly get sicker and sicker, never better. So I think I have a problem.
Could anyone with recommendations, or names and/or telephone numbers, please private message me, or just leave appropriate advice here.....
Thanks!
Hoosiers51
PS---also helpful would be info on the treatment: what did they give you for your problems? IV Glutathione? What kinds of supplements? How many supplements (tons or was it manageable)?
I strongly believe that the right Naturopath can help me, but I have been ripped off in the past by cheesy, all inclusive "clinics", so I would like to know a few details about what they give you and if it worked, before I "leap."
So what kind of change in your condition did you see from the treatment?
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Further question....I did some searching and found holisticheal.com
They have a test called "Methylation Panel with Methylation Pathway Analysis" that costs $625.
What company makes this test? Maybe I could get my local chiropractor to order it for me, if I don't have time to see someone out there on the West Coast. It could at least give me a starting point, since the test results include recommendations based on your results.
Could anyone with more info about this test let me know?
I also discovered a test called DetoxiGenomic Profile by Genova Diagnostics. This test seemed to be cheaper. Is it not as inclusive as the Methylation Pathway Analysis test that was more expensive?
AND, finally, say I get the $625 test and it comes back that everything is horribly wrong in my body. What is the treatment for it? (Just so I know what I'm getting myself into.)
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
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Member # 15759
posted
Okay, further update....
I explored that site some more, Dr. Amy Yasko's site.
They are charging $50 for the book/DVD on "Nutrigenomics." In other words, how to eat, and how to handle this, if you have these genetic mutations.
I am wondering if anyone on Lymenet can summarize this info for the rest of us....
I am not trying to "get information for free," because I think Dr. Yasko should be paid for her work....I'm just trying to get a better idea of what this journey entails, because if I can't make it out there, I might as well at least have a vague idea what the treatment for this entails. I'm obviously not going to order that book now because I will probably end up seeing one of these ND's.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
bump.....does anyone at least have Dr. Amy's phone #? i would like to make an appointment
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I saw your post on methylation pathways, and Phase I and Phase II Liver pathways. Can I inquire as to where on the West coast you are traveling to? Los Angeles area perhaps?
I am familar with those pathways as they are part of my treatment. I do not know of any ND's in the area, but I know a toxicologist there of which would be a better interpreter of those results and genetic mutations if they should exist.
-------------------- �Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it�s the only thing that ever has.� Posts: 149 | From Kansas/Missouri | Registered: Aug 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I'll be in the San Francisco area, but I am willing to travel pretty much anywhere if the person is good.
Yes, I'm looking for someone that could test me, and interpret the results, but I'd also like to know that this doc has helped people recover.
I sent you a PM. Posts: 4590 | From Midwest | Registered: Jun 2008
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-------------------- �Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it�s the only thing that ever has.� Posts: 149 | From Kansas/Missouri | Registered: Aug 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Yup, just got your second PM, thanks!
I really appreciate you taking the time to write me.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
There is a simplified methylation protocol developed based on Yasko's stuff by a guy named Rich Von Konynen, PhD (I doubt I spelled his name right).
He recommends a test by Vitamin Diagnostics.
The panel costs $300 and requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on your clinician's letterhead.
Available from:
Vitamin Diagnostics, Inc. Rt. 35 & Industrial Drive Cliffwood Beach, NJ 07735 USA Phone:+1 (732) 583-7773 Fax: +1 (732) 583-7774)
It can tell you if you have a methylation block.
The test from Holistic Heal is twice as much. There is a yahoo group that discusses the Yasko protocol. From what I can tell people spend tons and tons of money on Yasko's protocol and I've seen very few people make very much progress.
The simplified protocol (Rich VanK) involves 5-6 supplements.
I'll look for more information on it but I would save your money and go for the simplified protocol.
Also, it sounds like you are wanting the HLA DR test to determine what genotype you are?
I have the dreaded genotype so I have to make sure I include detox as part of my treatment.
I've been on the simplified methylation protocol for about six months. I'm currently treating my viruses with Valcyte.
Posts: 4 | From Northern CA | Registered: Feb 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Thanks for that info!
Nope, was looking more into the methylation stuff, and also the tests that measure the "phase 1" which I believe has to do with all those liver pathway enzymes (like 2D6, etc etc)
Not as much interested in the HLA genotypes.
Yes, the test on holisticheal.com test I saw was $625!
The first thing I thought to myself was that trial and error (trying supplements that treat the problem, then seeing if the problem is solved or better) would be much cheaper.
It sounds like that is the basis of this simplified protocol.
I was just reading about the simplified protocol, and it said that if you get worse on it, you WILL need the full Dr. Yasko work-up. Yikes!
(Just to be clear, the people that aren't making progress on her protocol that you mentioned....did they have an appointment with her and have all the bloodwork done?)
Anyways, has the simplified methylation protocol helped you? Maybe I'll try it.
I will be seeing a new LLMD in CA soon, so maybe I'll get his take on all this before making appointments with anyone else.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
I tried to find an LLMD or ND in the same area that does all of the testing & interpret the following:-
1. Genelex Gene Drug DNA drug reaction profiles 2. Methylation Pathway 3. DetoxiGenomic Detoxification Profile (phase 1,2,& 3) and I came up with 1 ND that understood some of it but not the genelex test which I think is the most important test
I am therefore speaking with my LLMD to see if he can help or advise - I will update you when I have more information as it would be great to have all this in our LLMD's clinic
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Rianna,
Thanks!
If you could give me the name of the ND that "understood some of it", that might still be helpful to me, because I could have him/her order the DetoxiGenomic one, since it seems to give a decent explanation with the test results at least. Better than nothing I'm sure.
You can just PM me the name and/or number if you have it.
Thanks for the info. I am trying to figure out how much of a role these issues could be playing in my inability so far to recover.
Is it "me" (aka, my genes or my blocked methylation making me too toxic to feel better or recover), or is it the fact that I haven't found the right drugs yet, and I need to keep experimenting?
I know we all have some degree of toxicity from these meds we take, but I want to know if this could be the major key to getting me better (as I'm sure we all would!)
So this is where I'm going to be concentrating my research today and tomorrow until I see Dr. H on Thursday.
Of course, when I see him, I will ask him all these questions, but I'm just gathering info now in case I can stay longer in CA to see someone, etc.
Anyways, I hope you are doing well! Keep me posted on what you have been up to!
Hoosiers51
Posts: 4590 | From Midwest | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Hossiers,
As you said: " . . .because whenever I take prescription medicines, I slowly get sicker and sicker, never better. . . . ."
You may want to be assessed for porphyria, too.
Since a chronic type can go along with some infections, it is best to have a doctor who is also literate in lyme and other chronic stealth infections would know that margin of it.
Testing is not terrific but porphyria should be considered for anyone with trouble from taking meds or who has severe symptoms around certain chemical exposures.
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
[QUOTE]Originally posted by Hoosiers51: [QB] Rianna, I could have him/her order the DetoxiGenomic one
You dont need to have a doctors order for that test you can order it direct from the company without a doctors script strangely I could not find it on the Genova Diagnostics USA site but I ordered it directly from Genova Diagnostics UK via this link its called the 'Detoxification Profile' and here is the link http://www.gdx.uk.net/index.php?option=com_gpanel&Itemid=2&task=view&nav=doc&id=55 then click on order and you will see it is �140.00 on the list SP04 under Metabolic
With regard to the Genelex profile this is a different test to ensure you can take medications/herbs/vitamins and will check how you metabolism them so a more detailed test than the Porphyria testing http://www.healthanddna.com/drug-safety-dna-testing/dna-drug-reaction-testing.html it tests for the following Extended DNA Drug Reaction Panel - 2D6, 2C9, 2C19, NAT2 and 1A2. Once you are tested it will allow you and your doctor to log in to your details and enter your drug etc to see if you can take it and if you can metabolise it and look at drug on drug reaction, from this your doc will then be able to work out your drug regime and dosage.
With regard to Glutathione again that the genelex test will tell you if you can/cannot take that dependin on your results as it tests every vitamin etc on their database as not everyone can take it
For now I would get this run as I am sure the LLMD you are seeing will have someone in his practice to help you with your results as the ND I mentioned is not taking new patients.
Rianna
[ 01-28-2009, 02:32 AM: Message edited by: Rianna ]
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