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Michel12

Courtagen

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Hello I'm diagnosed with Pans per Dr. L and have recently seen Dr. T in Ramsay. I really like him, he seems very intelligent and kind. He ordered some blood work to look for triggers. Mostly blood work that I have already gotten done over the years. But one thing he ordered that I have not done is Courtagen genetic testing. I'm not sure on the complete reason he ordered this test although he did say that there are Pans genes. Now does Susan Swedo recognize these pans genes and are they really neccesary to have to continue treatment? It is quite expensive at around 36,000 (whew). My parents wont be paying that much im sure but it is still something you have to think over.

So will this help me with treatment and will other doctors be able to read this and accept it besides DR. T? I dont want another Amen Clinic incident where we paid 3 grand for those worthless scans that no doctor will touch or look at. I just dont want to get swindled again we are paying so much as it is and I want to do things that are mainstream and neccesary. And what I mean by mainstream is that it works and is not "woo".

 

Thank You.

Edited by Michel12

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I am following this closely. I would like to better understand what Dr T does. I know he has a series of tests that have been published (and I lost that list).

 

I know some people that have seen Dr T and not they spent a lot of out of pocket money on tests and treatments without improvement. Then again we have seen Dr L and have had brief periods of impovement, but are not stuck and stuck begging for insurance to cover PEX. Now here is what I thought was odd - it was hard to get specific treatments out of them.

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I had not heard of this but I would be very skeptical. As the condition itself is very controversial, I don't see how it would be possible to know what genes makes one susceptible and what the point of knowing that would be.

 

For genes, in my opinion, it would make more sense to run 23andme for $199. One can find out about methylation and detox genetic polymorphisms. Even with those, there isn't necessarily one clear path on how to address them, though I do think they can be informative. But $36,000? Absolutely no way would I do that unless there were a very clear treatment plan coming out of the results.

 

I like to keep an open mind but it doesn't sound like the doc provided enough info.

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There are no "Pans" genes that are recognized by the medical community. There may be some that Dr T feels are more common among his patients, but from everything I've gathered from families who've done this testing, the results can be underwhelming and don't seem to materially change his treatment plans. I know Courtagen at one point had some sort of payment agreement where you would pay a flat amount and they would try to be reimbursed by insurance for the balance. But I don't know if that's still in place. IMO, unless its a life/death situation, no test is worth $36K.

 

Dr T seems very focused on mitochondrial disease and its role in Pans. I know some patients are passionately loyal to him and feel he's been very helpful. But I don't know that he has any greater success rate than other doctors (none of whom do Courtagen testing or even pay attention to 23andMe data).

 

I personally feel that the key to getting well is to correctly identify your trigger(s) and treat that trigger in the manner that works for you. Sometimes that's an infection. Sometimes it's mold or allergies or diet or methylation. Sometimes treatment means one antibiotic, or combos of antibiotics or surgical procedures or dietary supplements/eliminations or herbal antibiotics. There is no one path. The secret seems to be in working with a doctor who matches your philosophy and tends to look at the things that fall into your personal Venn diagram. For example, I don't think he looks for mold issues. For my kids, this was a huge factor and working with Dr T would've been unsuccessful for us. But if mitochondrial issues are one of your factors, you might find great success in working with him. So this isn't a slam against any doctor. It's a dating process. You need to work with the practitioner who's most likely to explore the things that are particular to your situation.

 

It sounds like your meeting was a good match so far. So I think it's reasonable to ask his office for an explanation of why this test and what happens if you can't or won't pay for it. IMO, it's not the best use of limited funds.

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