"first" Magazine Article On Nmh

[PattiL]

Today I just brought home the newest edition (July 9th) of 'First' magazine and started reading it. As I was reading the article titled "Does the heat make you super tired?", I thought to myself -- wouldn't it be funny if this was finally an article about POTS! On pages 26 and 27 (yes, two pages!) there's a article about NMH. There's even a couple quotes from Dr. Peter Rowe from Johns Hopkins. Anyway, the lady featured said she was helped tremendously by a book titled "From Fatigue to Fantastic" by Jacob Teitelbaum, MD. Has anyone heard of him or has anyone read this book. I'm just wondering if any of these supplements (no medication) have been tried by any of you and if they've been helpful. Of course, tomorrow I'm off to the library, or bookstore, to read this book.

Patti

[corina]

hi patti,

that is good news!!! who knows . . . . some day people will understand us???!!!

thanks for sharing,

corina

[juliegee]

Patti-

How exciting! I will look for the mag & book. My son has NMH and is treated by Dr. Rowe. I am convinced that this disorder is underdiagnosed & could definately benefit from better dissemination of info to physicians and the public at large. A "First" step!

Julie

[Sophia3]

Hi

I tried things mentioned in the Fatigued to fantastic book YEARS ago. Did not do squat for me. Sorry, not being negative just the truth.

Dr. Teitelbaum started charging THOUSANDS of dollars for consultations so I am glad I got the book from the library...would NOT give him a dime. He has some good "tips" but not for ANS issues.

Still, I may check out First magazine if I see it...which issue is it?

p.s. if you google Dr. Jacob Teitelbaum you can find LOTS of FREE articles online about him and his sleep tips, etc. Many supplements are VERY PRICEY and you have to weigh the risks.

In all fairness to Dr. T, I know a guy in a support group back in 1990 that saw a "top CFS doc" who charged FIVE GRAND for an "office consultation"...stopped accepting insurance, too!! so excsue my cynicism on some of these books and 'famous doc.' Only the wealthy can afford to see these docs though you can buy their books, videos, etc.

No offense to anybody!!

I even heard from the head of an org. that one of the CFS docs practices junk science so buyer beware and KNOW about "health food store" supplement,s ok?

[juliegee]

We pay $20 to see Dr. Rowe- thanks to UHC. And, he's been treating my son long distance for years without charging us a dime- despite my encouragement to charge us for phone visits, etc. (We do bring nice gifts when we visit to show our gratitude.) He's definately a top CFS doc & a very kind and caring man. His advice and advocacy has been invaluable and has brought my son back from being unable to leave home to attending the 8th grade full-time.

There are wonderful docs out there who really want to help. I'm glad the article in First is shining attention on NMH. We need a POTS article next!

Julie

[Sophia3]

MAck's Mom

Glad you are seeing a doc in it to try and help!!

I was ASTONISHED at how much this other doc charged and that was way back when!! I tend to get suspect when they no longer take insurance AND do not offer sliding fee scale to normal folks.

I also heard that same doc speak at Wright State University years ago..he did give an interesting speech though I learned nothing knew as I did my homework even pre internet in those days!! No easy feat. But at least he came in as a guest for the support group and company where I went for awhile for CFS.

That same support group way back then, got me a GREAT disability attorney who INSISTED I try to get SS on MY OWN FIRST and then to call him. He spoke with me for 45 minutes on the phone (this was in 1990 when cell phones were costly) and I will never forget his being so kind. I was detailed and thorough and got it on the first try.

So there ARE GOOD FOLKS wanting to help others w/o thinking of $$$$$$.

Glad you have a good doc for your child. That has to help.

I STILL would like to see the First ARTICLE and will check it to see if they have it at the library.

P.s. In retrospect, the doc in questioned charged $2000 back in 1990 and it was Teitelbaum I read about charging the 5 grand on an egroups site a few years ago..maybe he has changed his fees if his book is still selling and he is endorsing supplements.