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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Dr. Neville, Woodland's Healing Research Center, PA

Discussion in 'ME/CFS Doctors' started by Misfit Toy, Oct 3, 2011.

  1. Misfit Toy

    Misfit Toy Senior Member

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    People have reached out to me regarding different treatments and places I have been. Because I have lived near and know "Woodland's Healing Research Center" and "The Clymer Clinic," I feel like setting some facts straight. I go there at least once a month. I no longer see Neville. Good guy, but not for me.

    I saw Poesnecker, or however you spell his name back in 2000. He was an amazing doctor, but totally out there. He, like Neville, believed the adrenals were responsible for "everything" going wrong. It's not true.

    Staying at "The Sanctuary," took place for me back in 2000. It's a place that is boasted as being a refuge to get better. It's anything but. For awhile, it was uninhabitable due to mold. Also, there are 4 bedrooms and one shower. So if you stay there, you have to deal with that. There are 2 toilets. You have to deal with other people, noise, people not wanting any noise, sharing bathrooms, sharing a kitchen (and some don't like your food choices and let you know it). It was the most stressful experience and I don't recommend it AT ALL. There were so many odd CFS people there....I have MCS too, but some were so bad that they would complain about everything and it was a bitch fest at "The Sanctuary." I don't want to be around people who are in constant distress. It was extremely stressful. Don't think you will go there and have this spa like experience. It's a bungalow, cape cod, small house. It's anything but "spa like."

    Neville is a nice man. He has great intentions and helps people get better. However, he believes that the adrenals are the sole reason we are sick. If we got the adrenals to a better place, we would be better. Not true. I have worked on the adrenals and they would get better only to crash again due to a virus, perimenopause, surgeries, and whatever it is that CFS is. He felt that by treating my adrenals, it would cure my IC, my endometriosis, my CFS, my perimenopause, etc. He said it would take 2 years to heal the adrenals. That was 3 years ago. My adrenals are still a major problem. I never got better from his treatments. I am not saying he doesn't help some..I know he does, but how can someone say that after 21 years of someone having CFS, it will only take 2 years to get the adrenals to "well." Nevermind all of the other illnesses I have that cause major pain, etc?? Doesn't make sense. You need to treat all of these ailments at once...not just the adrenals. Plus, I have extremely high, like out of sight high, EB titers.

    But, everything that he put me on made me worse. I am not like others in that. But, I couldn't handle ACE, adrenal glandulars, pregnenelone, DHEA, estriol, etc. I was on a hormonal soup. My adrenals crashed after all of his treatments. I was on them from May until July of 2009 and for 9 months after the treatments, I was sicker than a dog. It took me forever to get better. He had me on all of this at one time. The irony of that is...when I went to him, I had said how I couldn't handle too much. I had been on Isocort and had become comatose. Within one month of seeing him, he had me on ACE, DHEA, Pregnenelone and Estriol with progesterone. I was a total mess. Basketcase mess.

    People have asked me about the magnatherm. Does it help? Like acupuncture. You have to do it a lot. You can't go for only a few weeks. You have to go constantly. I know a woman who rented a magnatherm for 5 years. After 5 years, she finally said, "I thought it was helping, but it's not."

    The adrenals are only one part of the picture.

    I had a doctor in California hit the nail on the head. She said to me, "The adrenals are not the problem, the adrenals can bounce back. Something keeps bringing the adrenals down." She was right. I started food allergy and hormone allergy treatment, changed my diet, my life, and got a little bit better with more energy. Then....I went up and up and what happened? I developed mycoplasma and then perimenopause. My adrenals went kaput all over again.

    If you want to treat your adrenals, great idea. If it has made you 100%, great! If it's helping you to function and be at a better place....great. But, you don't need to spend a lot of money by going and living in "The Sanctuary." Or using the magnatherm. A lot of what Neville recommends, you can get on your own and find out about it from seeing a naturopath close to you and trying one thing at a time. That is the key. TRY ONE THING AT A TIME. Do not push your adrenals.

    To me, Dr. Kracht, a doctor at Woodland's is still the best bet. He has been my doctor for almost 12 years. Yes, I am still sick, but he knows my body, my illness, recommends new and promising treatments, etc. At the same time, he hasn't helped everyone. Why? Because no one knows what CFS is. So...no one really knows how to treat it. Not Klimas, not anyone... Bottom line. It's hit or miss.
     
  2. bigmama2

    bigmama2

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    FL, PA
    excellent info. thanks for sharing it. i also saw dr neville (over phone) -did testing and treatment for adrenals. i do think it helped me some, but it is not the whole picture, or the main cause of cfs. it's one piece of a very big puzzle.
    bigmama2
     
  3. Misfit Toy

    Misfit Toy Senior Member

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    Hey mama...yes, I think it's important that people realize it's more than "just" the adrenals. I also want to warn people about staying there. Don't do it!! Don't. If you are sensitive to noise, need certain things...it's not the place to go and stay.
     
  4. madietodd

    madietodd Senior Member

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    East Coast, USA
    I just gave up on Dr. Neville. In my month with him, it took him 6 days to answer an email question about dosage. More recently, he replied to my email entitled "Mil Adregen is making me sick" after 9 days. I actually sent 2 emails - another one the following morning saying I'd decided to stop taking the glandular.

    When he replied, he said he'd "lost" the email. How do you lose 2 emails?

    You could object that I should have called, and if this had been an emergency I would have. But I had told him during our phone consult that the more crashed I am, the harder it is for me to talk on the phone, and he'd said that's no problem...email is fine. I'd thought that a dedicated CFS center would have this figured out.

    Maybe Dr. Neville does better with people who see him in person. Hearing your story about the Sanctuary, maybe not.

    Madie

    ps I lucked into an excellent local naturopath, who immediately ordered some bloodwork, including thyroid and dhea. As you say, it's not just adrenals.
     
  5. Misfit Toy

    Misfit Toy Senior Member

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    Yup. This is what I hear a lot.
     

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