Holtorf Clinic and CFS

Discussion in 'Fibromyalgia Main Forum' started by Andrew111, Nov 4, 2006.

  1. Andrew111

    Andrew111 Member

    I searched this forum to see if I could get a feel for whether anyone with CFS has been significantly helped by the Holtorf clinic in Torrance. I see positive comments about the thorough tests, some information about treatments, and some degree of change from people with Fibromyalgia. But what I'd like to know is if anyone with CFS has gotten significantly better from the Holtorf treatment. For example, does anyone here feel that they were cured of CFS by Holtorf. Or, if not cured, have you seen at least a 50% improvement? Or do you know anyone who has?
  2. LouiseK

    LouiseK New Member

    I went a couple of times. They are certainly willing to try things; lots of things. As for all the testing they do, I am not sure that all these tests are considered accurate in the traditional medical setting and they also play fast and loose with the results. They tried to diagnose me with low thyroid by asking me to twist my foot a certain way.

    I chickened out on taking the stuff they prescribed for me so I didn't go back.

    If you want to try some more adventurous medications and treatments -- like various IV's and tons of vitamins, etc. I would say go to them and talk to them about what YOU WANT. I didn't do that but I got the impression that it would be doable.

    It's very expensive but I would say it's worth it if you know what you want and they will work with you.
  3. Andrew111

    Andrew111 Member

    Thanks, Louise. It must have been one of the more intense treatments for you to take a pass. And I understand that my treatment plan (if I get one) might not be the same. Still, I'm a little reluctant because I've checked a few forums and can't find any positive outcomes.
  4. PVLady

    PVLady New Member

    I also went to the offices of Dr. Holtorf. I can't tolerate the supplements they recommend. I will be seeing Dr. John Chia in Torrance,CA in January.

    He is a infectious disease specialist. Alot of doctors go to him. Anyway, it takes a few months to get an appt.

    I have blood titer of over 3,500 for Epstein Barr virus. Dr. Chia treats chronic fatigue etc.

  5. Andrew111

    Andrew111 Member

    Hi PVLady,

    I'm sorry to hear about your problems with the Holtorf supplements. Also, I've heard very good things about Dr. Chia, his research, his testing, and his compassion. But I don't have a clear picture about his treatment. I hope you will let us know how this turns out.
  6. Andrew111

    Andrew111 Member

    Two comments so far. Anyone else out there been to Holtorf Clinic
  7. wildworld

    wildworld New Member

    This kind of question seems to come up a lot, and I've written on him a couple of times in the forum - you can search my posts for my varied responses. I think if you're expecting a cure, you will likely be disappointed. On the other hand, if you have already tried several other doctors and found them to be unhelpful, and you are willing to try about anything to get relief from your worst symptoms, as I was, you might find that relief. My biggest problem with his treatment, other than the price and poor customer service, was that I was on so many medications and treatments, I could no longer tell the difference between a symptom of the illness and a side effect from the disease. However, I'm seeing a new doctor now who has helped me to pare down the medications, and am feeling much better. I do think I got tests with some important results through the FFC that I wouldn't have received elsewhere.
  8. wildworld

    wildworld New Member

    Let us know how Dr Chia is. I heard good things about him when I lived in LA.
  9. Andrew111

    Andrew111 Member

    Hi Jaminhealth. Thanks for the alternate location to get hydrogen peroxide drips. And I have a follow-up question about your friend in your fibro support group who feels better. Can you tell us what the symptoms were that got better, and how much better they got. I realize this can very from person to person, but it still might help to know.
  10. Andrew111

    Andrew111 Member

    Hello Wildworld.

    I searched on Holtorf before, but still thought a new dedicated thread might draw information regarding CFS. So I appreciate you sharing the information again.

    I think I've given up on anyone giving me a complete cure. So it helps to know how and to what degree something helped. So thanks again for the detail.

    Also, the topic of Holtorf and CFS came up in some conversations I've had locally, and I referred people to this thread. And I'm sure the others are grateful for all the posts, and any comments here that might follow.

  11. laura81655

    laura81655 New Member

    I went to the Holtorf Clinic a couple of times. They also diagnosed a thyroid problem by checking my feet, little wierd. I didn't go for all of the supplements because I was already taking quite a few. The best thing that they gave me has been 10mg. of Natural Sustained release Cortisol that I get from the Compound Pharmacy that they use in Co. It has helped with increased energy and some of the pain, but definately not a cure.

    If you go and have have done a lot of research, you will be able to figure out what approach you are willing to do with them.


  12. Jillian40

    Jillian40 New Member

    Hello -

    The Holtorf Clinic is related to the Fibro Fatigue Clinics. The Torrence site was the first to open. Though the FFCs are run separately, the training comes from Holtorf. I "think" that his clinic also focuses on longevity and perhaps uses Growth Hormone treatment as well.

    I don't know if you are interested in feedback from someone who's received help from one of the FFCs, but if so, I'd have to say that I have gotten significant help.
    Though it's difficult to quantify changes, 50% may be a fair estimate of my recovery. I have Fibro and one of the CFIDS forms. My initial dx was Fibro, but then after caring for my very ill father and enduring 2 years of unrelenting stress, I began having fatigue, bronchitis, crashing in the middle of the day, sleep problems, postexurtional fatigue, etc.

    I have been going to the Denver FFC for about 18 months. I am followed via phone appointments now as I live in another state.

    The biggest initial change that occured was that my fibro fog was addressed. It is much improved. The second thing that was addressed over time, is my fatigue, by treating my underlying infections and sleep disorder, and my fatigue doesn't interfere as much and I'm able to continue working FT.

    Well Andrew, I sure do wish you well in your journey to find good medical treatment. I think you're wise to not look for a cure, but to expect gradual recovery. A certain amount of relief and change can likely be expected.

    By the way, Laura and Luisec, the "foot thing" was explained to me by my doc as a way to check for a specific reflex that identifies a low thyroid.

    Here's to Overcoming!
    Take Care,
    Jillian<br>[<i>This Message was Edited on 11/23/2006</i>]
  13. PVLady

    PVLady New Member

    I also hear good things about Dr. Chia from other doctors I see. On the other hand, three of my doctors have expressed they don't approve of the treatments at Dr. Holtorf's office.

    I am no one to judge. I went to Dr. Holtorf and was given all the supplements. I have a very sensitive stomach and get gastritis easily, so I just can't take the supplement.

    I have heard others here feel they really improved, but I am sure they took all the supplements.
  14. spiritsky

    spiritsky Member

    I went to that clinic and worked with Dr Whitman. I went last year around this time. I was completely disabled from CFS and rarely left the house, wasn't working etc...They did set me on the right track and gave me the boost I needed to get back on my feet and back to work part time within just a few months. They didn't solve all my problems, I solved some on my own, and they don't know everything either, but through time and research I was able to deal with most of my issues and now after 1 year I'm back at work full time and have my life pretty much back. Still my health isn't 100% perfect (I'd say about 90%) but I'm living well now and still tweaking and trying new things. Search on this site for my postings titled "Progress Notes" and you can follow my journey over the past year with them and what worked and didn't work. Good luck and keep searching for your answers.

  15. yesnettv

    yesnettv New Member

    I am pretty much fixed except for pain which was caused by two accidents. At leastr 70% better and have been able to back off on the supplements.
  16. drunami

    drunami New Member

    A few people have asked about Dr. John Chia. I have been a patient of his for about a year. Dr. Chia is an infectious disease specialist who has focused his work on a group of viruses known as enteroviruses, including echovirus and coxsackie virus. The treatments I have discussed most often with him are Gamma Gobulin and Interferon, both given intravenously. Both treatments are aimed at amping up one's immune system to fight viral infection. He tends to reserve the treatments for people with greater disability than I have so I have not actually tried the treatments (Interferon is difficult to tolerate, and can carry a very small chance of triggering autoimmunity). But he has published his data in the Journal of Clinical Pathology, and I believe the article can be tracked down via google. "The role of enteroviruses in Chronic Fatigue Syndrome."

    All in all, one should understand that Dr. Chia believes enteroviruses cause CFS and so his treatment is directed in that direction. The patient care is average, and if one is not going to try interferon or gamma globulin, then there is little focus on symptom relief. That said, Dr. Chia is very devoted to CFS as an illness, just in the very specific way he views the illness (which is true to certain extents of all practitioners).
  17. Andrew111

    Andrew111 Member

    Hi Jaminhealth.

    Thanks for the additional information. Holtorf is looking better. And I also found some positive reports about Holtorf, but under other topics.

  18. LdyM

    LdyM New Member

    Hi Andrew,
    I have CFIDS and saw Dr. Holtorf for eight months. Ran out of $ and was forced to discontinue. You can "search" my posts on him and the FFC Torrance, if you've not already done so. Sorry I'm not able to write more here. Feeling really sick today.

  19. Chootik

    Chootik New Member

    Hi Andrew.

    Well I've been going on and off to Holtorf for the last 3 years. I have to say they def. have an extensive testing system and a lot of different and up to date supplements.

    I did get about 40-50% better after taking the supplements he recommended, although I didn't take everything he gave me. Initially I didn't want to take Hormones and now I only take a little bit of the Thyroid. The rest I got better by resting (A LOT) and doing A LOT of research on my own and doing a lot of alternative stuff.

    The down side for Holtorf is that he is VERY expensive and the I have to say their customer Service is not the best at all! Actually there have been times that I left a message and didn't get a call back for days. Even then had to call them and yell at them to get a response. But I guess since he offeres a lot of new and cutting edge supplements and treatments, it's one of the only places to go to get alternative stuff.

    Most other docs just don't know enough about CFS and can't guide you in the right direction. I say give him a try, but do YOUR research and take the supplements that you think would work for you.

    Keep us posted on how you do.

    Best of luck
  20. Stein307

    Stein307 New Member

    I've been seeing Dr. Holtorf for a couple of years. For me, his strength is his knowledge of CFS, its causes, and the numerous medications and supplements that can be used to treat it. I'm very sensitive to a lot of different supplements and medications and have not been able to tolerate many that he has suggested. The one that has done the most good is natural cortisone which is prescribed through a compounding pharmacy.

    Overall, I'm not "cured" of CFS, but I am able to function better on a daily basis.

    Yes, he's expensive. But as far as I'm concerned, improvement of my health is worth it. And I have no complaints about customer service.

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