Seeking Doctor Who Know Simplified Methylation Protocol in Mid-Atlantic/Northeast

[Scotty81]

Hello,

My daughter (who has CFS, FM and POTS, among other issues) received the results of her Methylation Pathways Analysis test. This is the test that the late Rich Van Konynenburg referred to. She is also compound heterozygous for A1298C and C667T, which prompted this test. Not surprisingly, many of her results were outside the normal reference range, suggesting that she has issues with the methylation and folate cycles. In fact, several of her results were similar to the starting points of other CFS patients, as published in the research paper by Neil Nathan, MD and Rich Konynenburg, PhD.

I know of and have read about the authors' Simplified Methylation Treatment Protocol. The problem is that the authors suggest that one undertake this protocol only under the auspices of one who is familiar with this treatment. My question is how can one find such qualified individuals?

My daughter is already seeing a naturopath, and although qualified, she does not have any particular experience with this treatment protocol. I even contacted Dr. Neil Nathan's office, and did get the name of an individual in PA, but it turned out that this person is no longer taking on additional patients. The reason was that the doctor is going into semi-retirement. They didn't have anyone they could refer me to, however.

I also saw a similar posting by Little BlueStem, who was looking for such a doctor in the Midwest. I was surprised that there was only one response to this person's request. So, other than calling around for integrative docs or other naturopaths and asking them if they are familiar with this protocol, which is really trial and error, has anyone figured out a better method to find such doctors?

Ideally, I'd be interested in docs in (eastern) PA, NJ, MD, NY, etc, but I would consider other areas if all we needed access to was phone consultations vs. face to face appointments.

While I'm at it, does anyone know what kind of access, skill and experience are required in a person who is familiar with this protocol? I'm not sure if we need periodic access to check in if things are going well, or more immediate access, to discuss speed of ramp-ups and ramp-downs of supplements, if she experiences any side-effects.

Thanks in advance for anyone who has figured out if/where such a list exists. If it doesn't, can such a list be created?

Regards,
Scotty81

 

[Adlyfrost]

Hi @Scotty81 : My daughter has a number of CFS-like scary health problems but has not yet decided to get her SNP's tested and I pray to God that one day she too can find a doctor to guide her because with all the potential side-effects with any methylation protocol, I would have a nervous breakdown if she did not have a good doctor. I really feel for you as a parent.

I too am looking for a good doc in the same geographical area. If/when I come across one then I will let you know. For me the major roadblock is finances. There is Peta Cohen in NE NJ- heard that she is VERY expensive- deals a lot with autism. Also looking into Kara Fitzgerald in CT because she seems to have good credentials and will do long distance.

 

[Adlyfrost]

Dr. Robert Miller in PA. Very reasonably priced- has taken Ben Lynch's workshop and specializes in methylation therapy based on 23andme. Got an appt. for next month.

 

[Scotty81]

Dr. Robert Miller in PA. Very reasonably priced- has taken Ben Lynch's workshop and specializes in methylation therapy based on 23andme. Got an appt. for next month.

Adlyfrost,

By all means, please tell me how your appointment goes. I also found Robert Miller's name from I think Ben Lynch's website. I've found a few more at MTHFRsupport.com All things being equal, I'd rather have an in-person visit for my daughter. I'm also not sure if people are legally allowed to dispense treatment advice without first actually seeing someone. That may be true for MDs, but not true for NDs and others. And, it might vary state by state as well.

And, it's hard to get "a read" from an office's staff in response to my question as to whether their doctor has had experience in reading methylation pathways analysis results and/or in Rich Van Konynenburg's protocol. I've placed a couple of calls where the office staff has said that their doctor has had experience in treating methylation issues, but either I haven't gotten a specific answer to my particular question. Or, I've gotten a general answer as if to say "oh sure, we treat that". What I want to avoid is having my daughter seeing another practitioner that can't really address root causes.

One thing. You mention that Robert Miller (and I'm sure others) will treat based on the 23andme test. From talking to some professionals, they've said to be careful of "chasing the SNPs". That is, just because one has a genetic polymorphism, that doesn't mean one is going to functionally impaired (biologically speaking). So, that is why my daughter got the Methylation Pathways Analysis panel, which is the same one that was used in Rich Van K's study with Dr. Neil Nathan. However, just to cover all the bases, my daughter just took the 23andme test too. I look forward to your future posts.

Regards,
Scotty81

 

[Adlyfrost]

@Scotty81

All things being equal, I'd rather have an in-person visit for my daughter. /QUOTE]

I'm not sure Miller does long distance at all. I believe you are correct about treatment in person- I know you have to have an in person visit to get a diagnosis code for insurance- which may or may not pay for labs. Miller is a naturopath so visits can't be covered but I am hoping some labs will. However he has a very impressive consultant on board who is an MD- neurologist turned alternative medicine doc- Dr. Greenburg. Not sure that will help billing issues or not.

And, it's hard to get "a read" from an office's staff in response to my question as to whether their doctor has had experience in reading methylation pathways analysis results and/or in Rich Van Konynenburg's protocol. I've placed a couple of calls where the office staff has said that their doctor has had experience in treating methylation issues, but either I haven't gotten a specific answer to my particular question./QUOTE]

Check out his website http://www.tolhealth.com/Home.aspx and the link: Click & Learn How the World of Using Nutrition to Build Health Has Changed! He evidently has knowledge of methylation though I think he specializes in longevity medicine- probably because there is a large elderly population in rural PA.

What I want to avoid is having my daughter seeing another practitioner that can't really address root causes. /QUOTE]

They seem to be heavy into addressing toxins from their website- esp. environmental toxins- under the resources tab: http://www.tolhealth.com/Resources.aspx. The brochures and audio files tell a lot about their philosophy.

From talking to some professionals, they've said to be careful of "chasing the SNPs". That is, just because one has a genetic polymorphism, that doesn't mean one is going to functionally impaired (biologically speaking).

I couldn't agree more! Genetic test is just a rough guide. IMO my problems stem also from toxins I have accumulated by having impaired methylation cycle. Dr. Greenburg himself had a CFS like illness in his younger years he addressed by detoxing from heavy metals he talks about in the audio file #8- he is 78 and most of his experience comes before there were SNP's. So it is comforting to me that Miller has such an experienced MD working with him.

Of course any alternative doctor is going to try to sell you their products too to stay in business which I understand they have to make a profit. I hope he understands my frail condition and that I can only take dosages of a five year old because I have been so sick for so long . And that at this point, not being able to work, I have no money! And that if he wants to make a profit on me, he will have to get me better first (addressing root causes) so I can work, LOL! I will definately let you know.

 

[aturtles]

I don't have someone in your area, but I have just started with an ND in Seattle, WA who is impressing the heck out of me. She's already knows a lot about methylation and yet is also willing to learn from me, teach me, and read @ahmo's Freddd Protocol document. Please PM me for her name and contact info.

 

[Adlyfrost]

Dr. Jess Armine in PA. Google him- he's written lots of stuff for MTHRsupport website.