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Has anyone seen Dr. Kent Holtorf?

Discussion in 'ME/CFS Doctors' started by Gingergrrl, Jun 23, 2014.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I have been continuing my search for a CFS specialist in So. CA and found the website for Holtorf Medical Group in Torrance. I did a search on PR and found some comments about this doctor from a few years ago (mostly negative) but was wondering if anyone has seen him recently and have any comments (good or bad.) Thank you in advance for any feedback. I know he is expensive so I am curious if he really has the clinical background to treat CFS.
  2. SDSue

    SDSue Florida

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    I saw his affiliate, Dr. Garabedian, in PA. Some good, some bad.

    Very compassionate doctor with wonderful, responsive staff. He was the first to diagnose me properly and explain the disease. He took the time necessary, ordered reasonable initial blood work, and a sleep study. He was willing to support my disability claim.

    Treatment, however, was centered around Holtorf's very expensive nutraceuticals. I was put on wayyyyy too many at once, high in folic acid, etc. The IV he gave me on my first visit contained high dose glutathione, which, combined with travel, took me immediately from a level 5 or 6 to a 1 or 2. (I crawled thru the airport, unable to think, trying to get back home) I have yet to regain what I lost.

    He did not address my dysautonomia or attack the viruses he found. He did inadequate testing for Lyme. He did not check immune system function.

    I wasted years and thousands of dollars chasing inadequate care. I wish I'd have gone to a top ME doc instead, where I'd have received proper treatment while I was still in that magical 3-year from onset timeframe. Hindsight!

    Holtorf himself may be different. Hope this is useful information for you!
    Last edited: Jun 23, 2014
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  3. maryb

    maryb iherb code TAK122

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    @SDSue
    I had the same response to IV glutathione.
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  4. Daffodil

    Daffodil Senior Member

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    I wouldn't bother with the expensive CFS doctors anymore (I went that route for years and now am close to broke). I would go straight to DeMeirleir, where treatment is cheap. also, I suspect he is the only one who knows what is going on. he comes to Nevada now, too. (still cheaper to see him in Belgium though)
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  5. Dreambirdie

    Dreambirdie work in progress

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    I saw one of his associates who put me on hydrocortisone and caused the 5 year crash I am now in.

    I would NOT recommend them at all.
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  6. SDSue

    SDSue Florida

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    Only you and Freddd and me, from what I'm gathering. Something is different for us, but what is it?????
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  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Me too!

    Sushi
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  8. Daffodil

    Daffodil Senior Member

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    I had glutathione and Meyers cocktail and thought I was going to die of heart attack. MAJOR chest pain.
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  9. SDSue

    SDSue Florida

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    Wow. So there are more!

    I literally lost my brain - couldn't think, couldn't walk, could barely speak, and had horrific confusion. Lost all coordination, reasoning, shook like a leaf, etc. Scary stuff.

    Any clues, Sush?
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  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    When you look at glutathione's job description, if I am remembering correctly, one of its functions is detoxification. Since most of us seem to have been low on glutathione for a long time, we will have accumulated more of a toxic load than a healthy person. If we get a lot of reduced glutathione by IV, we might then overwhelm the detox pathways.

    Plus, it is essential to methylation but I'd guess that a big influx of it could throw other nutrients in the methylation cycle out of balance.

    I am no scientist though, so take this with a grain of salt!

    Sushi
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  11. xrunner

    xrunner Senior Member

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    One possible explanation is an intolerance/sensitivity to iv glutathione. I experienced that when I had mcs.
    Another possible explanation.
    According to Andy Cutler author of "Amalgam Illness" about half the people with mercury toxicity will get worse if given glutathione because, according to him, glutathione is not a mercury chelator but rather redistributes mercury.

    Moreover, the study on the Simplified Methylation Protocol by Rich found that among the people who did not get better were patients with mercury toxicity. Since methylation helps detox by raising glutathione, the study seemed to confirm what Cutler says about mercury, that by itself glutathione doesn't detox mercury.
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  12. SDSue

    SDSue Florida

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    Thanks, @xrunner - Good information. I am very confident that I have a huge mercury load. I had access to a chemistry lab as a kid and frequently played with the mercury. Needless to say, I was in HUGE trouble when caught.

    In addition, the onset of my illness followed shortly after the removal of 8 huge amalgam filings and placement of crowns.

    Does anyone know what test is best for mercury? I have been looking at DetoxMax, which is the chelation offered by the HeartFixer. IV chelation scares me. Suggestions?

    @maryb and @Sushi - Do you both have mercury issues? If I remember correctly, Sush, you did some chelation?
  13. maryb

    maryb iherb code TAK122

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    @SDSue
    Yes I think I have major mercury issues and still have 2 amalgam fillings, my problems now compounded by a recent diagnosis of Lyme.... so I'm sorry I can't recommend any chelators really. A dentist I saw last year takes a small spray of zeolite every day but I don't get on well with that, nor chorella, nor modified citrus pectin:(
    Good luck with finding something that works, if I could recommend one thing it would be if you can afford it work with a knowledgeable practitioner.
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  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I have used many methods to deal with mercury and other heavy metals--you name it, I did it :(. I hope they are under control now.

    Sushi
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  15. Gingergrrl

    Gingergrrl Senior Member

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    Thanks to everyone for the info on Dr. Holtorf and I decided I am not going to see him. Also, very interesting re: the IV glutathione as it is one of the things my ND wants me to try. I currently take liposomal glutathione (liquid) every day and have not had any kind of bad reaction from it. Do you think this means I would be okay with the IV? Also, I do not believe that mercury is an issue for me and I have never had any mercury dental fillings.
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  16. xrunner

    xrunner Senior Member

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    @SDSue, If mercury is your current problem, reading the book "Amalgam Illness" by Cutler could save you further problems. It explains how to go about testing in the safest possible way, chelators, support supplements etc. And yes iv chelation is not recommended for those sensitive to mercury.
    There's also excellent information on this board
    https://groups.yahoo.com/neo/groups/frequent-dose-chelation/conversations/messages
    have a look in the "file" section.
  17. SDSue

    SDSue Florida

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    Thanks so much. I'm hearing the name "Culter" repeatedly, so I guess it's time to buy the book, which is expensive - but cheaper than remaining housebound.

    The frequent dose method scares me, as it requires getting up in the night. Lack of sleep will crash me faster than anything. Do you know if Cutler recommends any other methods?
  18. xrunner

    xrunner Senior Member

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    I don't know this doctor so I can;t comment. However I have had a lot of iv glutathione through a treatment called phospholipid exchange.
    The point, mercury or not, is whether there's any scientific evidence that iv glutathione helps in ME. As far as I know there isn't.
    On the other hand, there's some evidence that the Simplified Methylation Protocol -- which turns on the body's own production of glutathione but it does other things as well -- helps some patients at a fraction of the cost of iv glutathione. According to the authors of the study on the SMP (Dr Nathan & Rich VK) the protocol did much better than glutathione. And it did in my own case.
    But of course iv treatments have profit margins that cheaper treatments don't but I wouldn't know whether this would also apply to this particular clinic.
    That would be the question for this doctor.
  19. xrunner

    xrunner Senior Member

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    No it doesn't unfortunately.The reason is to maintain adequate levels of chelators in the blood, depending on their half life, in order to avoid undue damage during chelation.
    Yes sleep, I'm afraid that's the downside of the approach. When I did it, I timed it so that I had to wake up only once in the middle of the night and in any case I didn't go further than rounds of 3-4 days, mostly, but it was tiring and I was always glad when the end of the round came.
  20. SDSue

    SDSue Florida

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    Thanks, xrunner - I'd sure love to hear how many rounds you completed and how you fared? "Enough to run again" would be the ideal answer, but I'll settle for "greatly improved". ;)

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