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Has anyone seen Dr. Podell in NJ for CFS/ME?

Discussion in 'ME/CFS Doctors' started by bushie, Oct 21, 2012.

  1. bushie

    bushie

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    Hi--I'm wondering if anyone has had experience with Dr. Podell. I actually saw him about 25 years ago, and at the time, he wasn't a big believer in CFS. I see that his attitude has changed. At the time, I thought he was kind of arrogant, but I'm wondering if he has become a more informed, compassionate doctor. I am in Ithaca, NY, and would have to travel to see him without any insurance coverage. I have seen Dr. Enlander in the past, who was unable to help me. I am very leery of starting with another doc, as I have seen so many, only to be disappointed. My greatest hope was working with Rich Van Konynenburg, but sadly, he has died. So, I am out to sea once again, and am considering trying someone new. Any other suggestions would also be welcome. Thanks in advance.
  2. loayachil

    loayachil

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    Good afternoon Bushie,

    I am sorry about you not being helped by any doctors. A few thoughts on what you have written, I hope that they are helpful.

    I do not understand why you would want to see a doc in NJ who did not believe in CFS, when you live far in Ithica? However, to my understanding, in NYC both Drs. Levine and Enlander use immunology protocol, while Dr. Natelson looks at it more as a neurological approach. If you are looking for a new view, that might be helpful. (He has done research in both the neurologic and auto-immune of cfs. but to my knowledge is more of a research doctor, kinda no nonsense)

    I too am looking for a doctor in the NJ area that might take on Rich's approach. I know that for the most part he has gladly told over his research and his approach here on the forum, although I believe that it is prudent to take it with a doc supervising. Most of his protocol can be bought (to my understanding) at http:/www.holisticheal.com .

    Also before starting on Rich's protocol there is a methylation testing offered at Health Diagnostics and Research Institute (732) 721-1234.

    I got the above info from Verrillo, Erica's Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition which I found useful.

    hope this helps and that I gave the proper information,
    Lo
  3. bushie

    bushie

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    Hi Lo (I love that),
    Thank you so much for responding to my post. The reason I am considering Dr. Podell is because my brother knew him in the past and informed me that he has now become a specialist in CFS, so he suggested I think about seeing him. New Jersey is a few hours away, but, I thought it might be worth it if I only had to seem him occasionally and he was able to help. I had to travel 4 -1/2 hrs to see Dr. Enlander.

    Thanks for your info about the focuses of the docs. I haven't looked into Natelson much, but I'm beginning to focus more on the neurological end of things myself right now(weird stuff happening with my ANS), so perhaps I should look into his work and consider seeing him. Who have you seen in the past and what was your experience?(I 'll understand if you don't want to answer that if your experience has been extensive).

    I actually started working with Rich about 6-8 months ago, and had the methylation test done on his recommendation. From those results he felt that I would be a good candidate for the methylation protocol. I started his simplified protocol and had some relief within the first month, but then it stopped working. He suggested I have another test done, the ION Panel w/40 Amino Acids from Metametrix(an $850 very comprehensive test), to get more information about why the protocol may have stopped working. The test was helpful(he sent me a 3 page email analyzing all the results--he was amazing)and I am now on a slightly different regimen that he recommended. However, I am not feeling any improvement thus far(been on it a little over one month), and am having some very unpleasant ANS side effects, so I'm not sure what to do. In the past, I could have emailed Rich for suggestions, but, sadly, I no longer have that option. I have looked to the forum for info on what others have done, but frankly, everyone has a different opinion and I find it more overwhelming than very helpful. I would imagine you have had similar experience with forums. Anyway, since I am without guidance once again, I am looking for a doc who might be able to help. Actually, one of the things I am strongly considering now is heavy metal chelation, as I do have some buildup of heavy metals, and am wondering if I should deal with that before going any further with anything else. The challenge, once again, is to find someone not too far away with experience in that.

    Again, I so appreciate your response and info, and I hope you have luck finding a doc in NJ. If there is anything I can do to help you, please let me know.

    Take care, Diane
  4. loayachil

    loayachil

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    Good afternoon Diane,

    I can tell you which doctors I have seen, but it is kinda pathetic. I started CFS at 16 and went to must have been 30 eye doctors (the original cognitive failure happened when I got new glasses) and after being told that it was all in my head, had nowhere to go (when you're a teen, if you don't have the support, you're up a river). At 25 I started seeing specialists, with zero. I started seeing Dr. Alan Weiss in Maryland, but his protocol was vitamin based and got me nowhere. (And he didn't tell me that there were other approaches, kind of burnt me.) I did not even realize that there were other ideas, until I stumbled on this site a few months ago, so in reality, I've had no "real" help till now. (And for 17 years having no idea what was happening and no support, I just kept on pushing myself even when I couldn't).

    I recently started with Dr. Susan Levine, although all I have had is my initial visit, so it is not enough to state how that is going. She is caring and somewhat altruistic but I think that she too tries the immunology protocol, so I do not know if that would be helpful for you.

    I also read on a thread that Dr. Natelson is running a spinal tap research, and I have signed up for that, which comes with an initial free visit. I know that he will be focusing on his research and not on me, but if he finds some bio marker from the spinal tap, or notices anything on the visit, I will be happy with that. But as mentioned I will be seeing him in two weeks and have not met him yet.

    I googled Dr. Podell, and for some reason his CFS info didn't impress me. (Although I did like his knowledge of the biomarkers, although I have also heard of them). For some reason it sounded kind of oil slicked. That does not mean that he is not worth it, but my looking at his web site did not impress me (please dont make your decision based on my last paragraph.)

    You mentioned your brother dealt with Dr. Podell in the past. Is he also suffering from CFS? I hope you and your family are strong and have support.

    You mentioned "I'm beginning to focus more on the neurological end of things myself right now". In the book I mentioned, she has a whole section from Dr. Jay Goldstein about his Limbic Hypoteosis. To my understanding, an MRI will show if there is structional damage (for the most part CFSers don't have it), a spect scan will show if there is oxygen depletion (yup we're there), a functional MRI shows which part of the brain is being activated (we usually have more of the brain working when we need to do anything slightly complex) and a pet scan (which is almost never covered) shows how our brain is taking in sugar. There's also a BEAM test and a QEEG test, although not sure what they do.

    And one last thing. This is Dr Shirwan Mirza in upper state NY (Auburn, an hour away) who deals with CFS. He believes that CFS is really a whole bunch of other illnesses that just haven't been diagnosed. I have not seen him but there are Phoenix'ers who have liked him.

    (And I appreciate that you liked my name, but I never thought of that. It's actually a translitiration of Hebrew "to him").

    Thanks for offering your support, I felt it,
    Lo
  5. bushie

    bushie

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    Hi Lo,
    Thanks for sharing some of your medical experience with me. I'm so sorry you've struggled and been in the dark for so long. It's frustrating, to say the least, that we often have to be our own researchers, diagnosticians and treaters, because there is so little info out there in the general medical arena. I'm glad you finally found this resource to help guide you on your way and give you some support. I hope you have good luck with Dr. Levine.

    I am interested in Dr. Natelson's research projects that you mentioned. I looked it up and I think I will apply to be a part of one of the studies as well. If I get in, perhaps I'll see you there!

    Yeah, I'm not gung ho on seeing Dr. Podell right now. I can't put my finger on it, but his website along with my previous experience with him doesn't get me too excited. Not to mention that the initial visit costs $1100. My brother is not ill, he had a professional relationship with him.

    Thanks for your suggestion of Dr. Goldstein. I actually saw him when I was living in CA, and unfortunately, he was unable to help me. Of course, that was a long time ago, and I'm sure he's got newer things going on now. I'm hoping if I get into Natelson's study that I will get some more neurological info from the study tests.

    Thanks also for your suggestion of Dr. Mirza. However, I wasn't able to find much info on him aside from one guy in these forums who seems to be a big fan. What I did read about his approach looks like stuff I dealt with already, and I don't like the idea that he doesn't believe that CFS really exists. He doesn't sound like he'd be a very supportive physician if one of his ideas didn't work out. I suppose he might be helpful for someone who is just starting to explore what is going on with them, so certain things could be ruled out first.

    I took the liberty of going back and reading some of your earlier posts, and I read about your difficulty with a tightness in your chest and problems with breathing. I have been struggling with breathing since the early days of my illness, though not nearly to the severity that you have. My tightness is not in my chest, but in my diaphragm and solar plexus, which also affects my digestive system. It takes much effort to inhale deeply. I wanted to share with you a website and some info re: breathing that might be helpful to you, if you're not already aware of it. According to Dr. Myhill, she believes that PWCs breathe TOO much, rather than not enough. In other words, she thinks we hyperventilate. She recommends a technique called the Buteyko method. I have been working with that method a bit myself, and thought it might be worthwhile for you to check out. The best site I found for it is http://www.normalbreathing.com/
    Here is a link to the article by Dr. Myhill.
    http://drmyhill.co.uk/wiki/Hyperventilation
    I hope this is helpful to you. Take care, Diane
  6. loayachil

    loayachil

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    Thank you.
    And good luck
  7. bushie

    bushie

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    Hi Lo,
    I got the feeling from the brevity of your response that I may have offended you somehow. If I did, I am very sorry. I am only interested in seeking information and giving help when I can. I wish you much luck in your recovery. Take good care, Diane
  8. loayachil

    loayachil

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    No, the exact opposite.
    I was extremely appriciative of when you said. "Again, I so appreciate your response and info, and I hope you have luck finding a doc in NJ. If there is anything I can do to help you, please let me know." & "going back and reading some of your earlier posts"
    I just didn't have anything to add (and was exhausted), but I didn't want to just hang, so I said Good Luck.
    Let me know which direction you end up, either finding a new doctor or going to neurologist, or another doctor to assist in removing the glutathione block. I also am looking for a generic doctor to manage the CFS besides for a specialist, but I have no luck.

    If you do end up going to Dr. Natelson (although he's out this month), let me know and maybe as you mentioned we could bump into each other.

    All the best, let me know, and if anything pops into my mind I'll post again.
    (Out of curiosity, where does "Bushie" come from?)

    Thank you,
    Lo
  9. Andrew

    Andrew Senior Member

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  10. bushie

    bushie

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    Hi Lo,
    I'm glad to hear that, thanks for letting me know. I totally get "exhausted" and didn't mean for you to feel badly about not writing more, it just seemed uncharacteristic compared to your other responses. But I know how that goes. Sometimes you can do it, and sometimes you can't--end of story. "Bushie" is a nickname I"ve had that's derived from my maiden name.
    Take care, Diane
  11. bushie

    bushie

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  12. loayachil

    loayachil

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    Good morning Bushie,

    Thank you for your advice where you mentioned that you feel that your chest pains are mainly in your diaphram. I am going to a GI doctor tomorrow, and will mention that to him, see if anything strikes a chord.
    Also, I went to a support group recently, and when I mentioned that I had visual problems and tightness/breathing problems, they mentioned mold and Dr. Shoemaker. I am very curious with that approach, as my first year of the illness was alos the first year that I moved into the dorms. However, based on what people are mentioning, Dr. Shoemaker seems to be a very centrist approach, that only his way works, so this might end up being another "go to doctor, and get nowhere". I will probably send this as a post later, but am researching whether to go to him, or try to see if there are other mold doctors or having a gp try his protocol (he starts with a cholesterol drug which amongst other things binds mold and removes it).

    Thank you,
    Lo
  13. bushie

    bushie

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    Hi Lo,
    Good luck with your GI doctor visit. As far as Dr. Shoemaker is concerned, I went to see him and he was very helpful up to a point. As with most CFS docs, he does have a very specific approach and once you have explored that as much as possible, he can't really take you anywhere else. That being said, he was definitely helpful for me in terms of mold and some bacterial issues. The Cholestyramine he prescribes, although a difficult process to endure(constipation, etc.) was very helpful for me. So, I wouldn't go to him looking for someone who can oversee your full course of treatment, but he could be beneficial for one specific area. He is extremely knowledgeable and experienced in this regard. I haven't found anyone else who does what he does. I don't know if you were given his website but here it is:

    http://www.chronicneurotoxins.com/

    He offers a visual contrast sensitivity test as a way of telling whether or not you can benefit from his treatment. It costs $25(at least it did when I took it) and the interpretation will give you a better idea of whether he might help you. If you want anymore info about my experience with him, let me know and I'll see if I can be of help.

    Good luck, Diane
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    You can do the visual contrast test online too. I paid $15 for it a few years ago.

    Sushi
  15. loayachil

    loayachil

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    Thank you Bushie and Sushi,

    I tried the visual test and passed. I can see clearly, I just can't process it (although there is a chance that I cannot see clearly, so my eyes strain until I can). Who knows. The vision has always been the largest enigma for me.

    Thanks,
    Lo
  16. rk1966

    rk1966

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  17. Bethany

    Bethany

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    Dr. Podell diagnose me back in the early 1990's. He went on to be better informed, but he was good even then. I do recommend him.

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