Holtorf clinic in LA

Discussion in 'Fibromyalgia Main Forum' started by sunkenhero, Jan 20, 2009.

  1. sunkenhero

    sunkenhero New Member

    I am considering spending my precious few dollars at the Holtorf clinic. I have an apt. in Feb. to see Dr Wightman. can anybody give me any feed back good or bad.. I will be flying there from Hawaii so it is a long way from home.
  2. dannybex

    dannybex Member

    ...with mostly negative comments, although a couple of positive ones. He's the guy who started the Fatigue and Fibro (or Fibro and Fatigue) Centers. Very expensive, and a little too reliant on hormone therapy in my humble opinion. :)

    A search should turn up the thread.

    p.s. I just tried the 'search' feature. It sure doesn't work very well. But I found the thread because I posted on it:

    [This Message was Edited on 01/20/2009]
  3. panthere

    panthere Member

    Don't know anything about this clinic, but I can suggest this place in LA http://www.drgruenn.com/index.asp?page=gruennHome I love Dr. Gruenn, he's really knowledgeable. He is very good about combining western with holistic medicine. If you are here in LA, you might as well try couple of places...
  4. Heyygirl

    Heyygirl New Member

    I have been a patient of Dr. Holtorf for 1 1/2 years. I have been fortunate in that my insurance pays 70% of visits and 100% of labwork. He has discovered several issues that no other docs had, and is willing to try things. The labs are different each time I go, he hands out tons of written info and I have a binder now of current research. As to cost, I get some of my hormonal and nutritional suppliments from his facility but many from cheaper sources. He doesn't seem to mind. His approach for me, seems to be hormone based rather than infectious agent focused. That has me a bit puzzled at this point since my last appt showed my c4a and c3a levels high and when I questoned it he simply said,"Well, you are fighting something...but we already knew that." I was too brainfogged to continue discussion on that day. Gonna question the possibility of Lymes next time I go.

    He will actually call me at home if I email questions to him between visits and he doesn't feel his nurses could explain adequately...which I appreciate.

    He only has patients a couple of days a week anymore as he is doing more research and publishing. Hence, he has hired more docs at his Torrance clinic and reciently opened up a facility near Palo Alto.

    There have been discouraging moments to be sure, and some things have not worked, but at least he is willing to try and overall I am better off than before. I do think I am interested in finding a doc who may pursue the infectious component more adressively as well, but I will not give him up as he is a total research junkie and I knew before even going to him that many of my issues ARE hormone based, expecially since I have no thyroid, ovaries,uterus, and adrenal cortex is shot.

    Holtorf and Bauer started the Fibro and Fatgue clinics but Titelbaum is now involved. There was a parting of the ways last year...dont know why, but most of the suppliments that Holtorf used from them "Ultraceuticals" he is now having produced under his own name.

    Hope this helps. I have not expected an overnight "cure" and the protocols he follows do take time for the body to adapt and respond to. I didn't become ill overnight and I have never had the notion that I would get over it quickly. I had decided I would give it a year and see how I felt at that point. At that point I have decided to stay, especially after reading about folks' experiences both on this site as well as others.


    PS> He will do consults after the first couple, over the phone.
    [This Message was Edited on 01/20/2009]
    [This Message was Edited on 01/21/2009]
    [This Message was Edited on 01/21/2009]
  5. vancerd

    vancerd New Member

    So did you go? What were your results. I went for the first time in Jan. and I'd like to compare notes with you.

    Best Regards
  6. bakeman

    bakeman New Member

    i traveled many places to surf and got sick after returning from a 2 month costa rica trip in 2000. i have tried to surf about a dozen times with horrible outcomes since getting sick. i had to trade my shortboard for a longboard. i'd like to hear your story.
  7. Heyygirl

    Heyygirl New Member

    He showed me the bloodwork that we had done last year which came up negative for Lymes. He then upped my t3, which we just started on last fall, and I am feeling so much better. I haven't had a URI in over 8 weeks which is a record for me. My energy levels are better than in the last 5 years. I can actually do things in the late afternoons and evenings without crashing the next day. There is still a need to pace myself, but the active periods are much greater. This has taken a year and a half. No quick fixes for many of us. The real test will be next fall when school starts again. My "season" for illness is fall and winter.

    What was your experience like?
  8. Woodly

    Woodly New Member

    I have been following your posts about Holtorf Medical Group. My wife and I are researching the group considering an initial consultation with them. Any information you or anyone else could supply would be appreciated.
  9. ladybugmandy

    ladybugmandy Member

    doesn't dr. jacob teitelbaum live in kona, hawaii?
  10. vancerd

    vancerd New Member

    I went in Jan, had a phone follow-up in Feb, and a second phone follow-up visit just yesterday. Overall my experience has been a positive one so far. In short I would say ditto to.

    "My energy levels are better than in the last 5 years. I can actually do things in the late afternoons and evenings without crashing the next day. There is still a need to pace myself, but the active periods are much greater."

    I love the way the Dr. explains everything to me (guess it's because I'm an engineer,... I need to understand). I love it when he says "..... this is what's going on, I'll teach you more about that". What other doctor does that?

    Before going my good days were the exception, now bad days are the exception. I still have a little ways to go, but I am very confident I will be feeling 99% better by the time I have been in treatment for a year.

    That's the good stuff....

    The only down side is; they are far away, and they are kind of pricey. I have read of people spending 20 grand to treat this condition. I don't think it's going to cost even half that for the first year, hopefully the number of visits and supplements required will decrease over time. My insurance pays very little of this. 50% of the office visits, none of the supplements or prescriptions.

    Good experience, effective treatment, but it will cost you....
    [This Message was Edited on 04/23/2009]
    [This Message was Edited on 04/23/2009]
  11. debilyn

    debilyn New Member

    I've been going to Holtorf's office since 11/07, and I wish I had the good experience as some of you have stated.

    My doctor is Kofton, and he really hasn't helped me much at all. When I first started there, I was hooked up with Dr. Shah. She was really proactive, put me on anti-virals, great supplements, hormones I needed, and dx'ed my Hashimoto's. But she left the Torrance office.

    Overall, Holtorf's office fixed my thyroid problem but my FM is blazing out of control. My last visit was in January 2009 at which time Dr. Kofton said he didn't need to see me again for 6 months. I was shocked at that because I am suffering miserably in the throes of FM pain.

    I felt like he totally wrote me off; totally doesn't want to try and help me anymore. I had been going every 8 weeks up until my last appointment.

    I've never been offered the option to email Dr. Kofton and many times I've left my appointments in a fibro fog, so I could have used some email clarification a day or two later.

    When I've called Holtorf's office with questions, I've been met with comments such as "we have a lot of patients to help; we'll get to you when we can," and "go see your primary care provider for your pain." Once, I sent back some supplements per their refund policy. When I called for my refund, they said they'd apply it to my next "super bill" 8 weeks later.

    Then when I went to that appointment 8 weeks later, I was in such a fibro fog that I forgot to make sure they credited my account. They didn't. They charged me the $275 for the office visit and didn't apply the $144 credit.

    I don't know about you, but it is not easy scraping together that much money to see a doctor; I needed that credit.

    So, my experience hasn't been that great. I have spent over $6000 at Holtorf's. I wish I had better things to say about that office.

  12. inprog

    inprog Member

    I have been Dr. Holtorf's patient since 2006. I am very sensitive to most treatments unfortunately but the heparin therapy is very helpful. I am on a reduced dosage right now but still use it and when I stop it for longer than 5 days, (my idea) I get short of breath again and puffy ankles, etc. As of the first part of 2010, Dr. Holtorf is no longer seeing patients. He is doing research only. Don't forget he has CFS also so I am sure he is highly motivated for himself too. I shall miss his fine conversations and brilliant mind. I think just to keep up with him mentally was somehow therapeutic during our office visits. I do not have insurance and could not take most things or try them because of that. Because of my sensitivities, it was best I was limited, I think. But I researched everything out there and pretty much know that I have to cut my own path. Dr. Kofton is my current doctor that I see every 6 months at the clinic. Dr. Gruenn is also my doctor and I high recommend him as well. I see him for any other problems that might come up outside of the CFS. I have not gone to him for that.
    inprog (ovrwhelm)
  13. Heyygirl

    Heyygirl New Member

    My experience is nearly like yours. Holtorf's patient for several years, now see Koftan. I also miss the verbal interaction with Holtorf, but I must say that ever since the "step 5" of the protocol, where they discovered the coagulation defect, while the initial startup of the treatment was not at all pleasant, the outcome has been terrific! I only get 2 -3 colds per year, I still can do things in the evenings and weekends (unless I am fighting a virus) and overall feel normal for my age(60). I go the gym with my husband 2-3 days a week, have actually begun to loose the weight I put on after my thyroidectomy and hysterectomy 20 years ago. Koftan is willing to let me tweak hormone levels to achieve the best I can be. I too am on 6 month visits now. This clinic saved my life. I am sure I would have had to retire early on disability had I not stumbled upon them. But one cannot expect quick results. That's why it is a 6 step protocol. Our bodies are complex, we all have different issues and it take time addressing each one to rule out the others. Was the money worth it??? YOU BET!! I'm a grandmother as of 2 months ago, and I don't want to miss this part of my life!!!!
  14. RR22

    RR22 New Member


    Just joined ProHealth a couple of hours ago and don't even have my profile written yet. Was searching for other Holtorf experiences and was impressed by your posts (first ones I read were in 2009). Your recent post about them just discovering your coagulation defect is curious to me.

    I started with Holtorf because I have a coagulation defect. Since Holtorf isn't seeing new patients, I saw Koftan almost a year ago for 3 visits, switched to Whiteman Spring 2011 and have had 2 visits. The basic coagulation tests were perfomed my first round through Quest and I was confirmed w/ fibrin buildup...a manifestation of hypercoagulation.

    The reason I saved money to get started with them is the reputation that Holtorf has in this area. Would be interested to compare notes on all the steps you've taken, which are far more than mine. I'm a cash patient and save for each round.

    Have had some benefit, but know that I can get much better and eventually experience radiant health. They did define my hypothryoidism as coming from Hashimotos which I appreciate. Yet, I feel like I'm pulling them by the nose to get with the program on my behalf. After reading many posts, have a feeling it's because I'm not a big cash cow patient that can be milked like a woman I know who feels totally gauged that she's spending $1,000 a month on their supplements. She's afraid to quit anything as her hair falls out. At least they could advise her and work with her to withdraw what is not directly related t hair loss. Even though she's had the money, she won't continue to for years on end and feels pretty abused by the process. Personally, I have found the companies that make the products they slap their labels on and am purchasing those that I need for 40-60% less, plus free shipping in most cases. Am also adding on where they have overlooked the basics.

    For me, while I was titrating T3 to where I am now, when I reached a level of 100 mcg w/3 gr of Naturthroid, I experienced extreme blood thinning and had my coumadin adjusted. This showed me that once my thyroid is tweaked, my hyperoag situation will be resolved; clearly demonstrating the link between the thyroid and coagulation. However, Koftan (who has left for personal reasons) and Whiteman did not 'click' with this serendipitous event. They just responded, 'that's a very dangerous INR'.

    Am preparing a spreadsheet and going to contact Holtorf directly. Meanwhile, I was instructed to wean off of Naturethroid and have had my T3 increased to the present level of 150mcg of their time release T3. However, I feel that my energy has flatlined and I've stepped backwards. In an audio interviews w/ STTM, Holtorf has admitted that time release products have fillers that affect efficacy in many patients; although he states he's working with American Integrated Pharmacy (his supplier, I guess) to get better fillers. Also read that he does not take time release T3 for his own hypothyroidism, rather he takes Cytomel. Reminds me of Congress passing obummercare, while they won't enlist in it themselves...Apologies for my cynicism.

    I did not refill my t3 with them last week. Have been taking my leftover Naturethroid tabs and I'm ordering Cynomel from Mexico today. Have found many patients love this product. It's stronger than the U.S. Cytomel and 3x stronger in efficacy than the T3 I've gotten from Holtorf. It should be here in about 2 weeks and I know this is going to be a big step for me in regaining my thyroid health. Did you resume taking Armour or adding some back in w/the T3 you get from their dispensary?

    Hope I can help as much as I know you can with all of your experience. Love that you have new grandchild and are experiencing so much joy!


    [This Message was Edited on 09/14/2011]
  15. RR22

    RR22 New Member

    Hi DebiLyn,

    You've probably solved your credit issue w/Holtorf long ago, I hope. I have had a few visits with them since 2010 and have returned supplements...unopened and w/in 30 days as required.
    If they are paid for by credit card, they'll reimburse your card. If you paid by cash or check, you will get a reimbursement check sent in about a week. The check did not arrive last time and when I called, it was sent within a couple of days from the call.

    Turns out that the doctor visits are in one account. The supplements are in another account. The dispensary is in yet another account. That's probably why they didn't apply your supplement refund to your visit.

    My Holtorf experience has not been stellar like I expected, either. I have gotten some benefit and am now taking certain aspects into my own hands because it's frustrating pulling them along by the nose. Afterall, they're supposed to be the experts! I'm ordering Cynomel from Mexico today, as I've found lots of patients (including Holtorf himself, so I've read) have a better benefit from Cytomel (the U.S. brand) than compounded T3...because the fillers can have adverse affects and lessen efficacy...a problem they will solve sooner than later, I hope. Mexican Cynomel is supposed to be a bit stronger than the U.S. counterpart and 3x stronger than my T3 from Holtorf's dispensary. If the reviews had not been so good, I would be purchasing Cytomel in the U.S. and the cost for my dosing needs would be running almost $200 a month. I will begin to stagger my dose, as T3 has a shorter half life than T4 (which is why lots of compounders add fillers to spread the effect over the day). Will post my experience and hopefully gr8 success with it after I've had it for a couple of weeks.

    All the best in your return to radiant health...Renee

  16. Heyygirl

    Heyygirl New Member

    Thank you for your beautifully descriptive explanation of your diagnosis and experience with Holtorf's clinic. Sorry I didn't respond sooner, but am super busy with a new language adoption at my job. Which is wonderful! I can actually function and put in 9 1/2 hours a day at work at my teaching, which would have been impossible to imagine 3 or 4 years ago.

    Your experience at the clinic, and your feeling the need to "pull them along" disappoints me, but quite frankly, is no surprise. I was fortunate to be a patient of Dr. Holtorf and was informed of every step of the protocol as it was addressed, so there was no sense of being ignored whatsoever. I knew before going there, that I had a thyroid issue (it was removed years ago due to goiter). Agressive procedure to be sure, but my brother had thyroid cancer so we took no chances. I also had learned of the adrenal insuffucuency through a doc in Indiana I had discovered thanks to Mary Shoman's site on About.com. All this prior experience was a great foundation to the masses of information I obtained from Holtorf. Brain fog slowed down the absorbtion of this information, and while I was frustrated that improvement didn't seem to be happening quickly enough, I will admit that I struggled to worry about it, as the reading, and fatigue kept me busy enough. He explains his protocol on his website, and as I have stated earlier on this site, it wasn't until we addressed the infectious component, and the resulting coagulation defect, that I began to see results. At that point Dr. Holtorf prescribed a widely used Chinese vein aid treatment, an enzyme made from earthworms called lumbrokinase. After 2 days, I became very ill, called him and he told me that it was working, that the enzymes were digging up the viruses and bacteria from old infections. The problem was that my immune system could not handle the onslaught, so he suggested that I stop taking it and wait until school was out, come to his clinic and get IV support to help me through it. I did this, and for 2 weeks that summer, took the lumbrokinase, and sat with IVs containing, vitamin C Coloidal silver and glutathione. It was a difficult 2 weeks, but a few weeks after I began feeling better. That was 3 years ago, and today I can say that I have been illness free for 4 months,swimming laps 3-4 times weekly, first time in about 10 years. I still get viruses from my students,but these don't "flatten" me anymore, got pertussis 2 years ago, but am working and capable of having a life after work. I am quite grateful and glad that I stuck out the protocol procedure.
    I will admit, that I felt better on Armour than straight T3, and no, I didn't know that Holtorf uses Cytomel. I do know that straight t4 was no good for me, as my body does not convert the t4 to t3 efficiently, but I do seem to have more general inflammation on t3 than I did on Armour. T1 and t2 must be important. I will be curious to see your feelings about your Mexico experience, and am pleased to see that Armour is back in production.
    Oh, and as to the business aspect of the clinic, now that I am no longer seeing Holtorf himself, yes, I agree that it is less personalized, less efficient, and it seems that his docs are not as committed to the protocols he suggests. I also think it is more about business than care, sorry to say that. I miss the care and communication I experienced with him.

    I hope that your spreadsheet gets to Holtorf. He loves empowering patients, and patients who want to empower themselves. At least I hope he does. Seems like things with him are more promotional in nature these days, which I understand, if the word is to spread and become more mainstream. I just do know several patients who have been sacrificed along the way, and if I personally know as many as I do, I am sure there are many many more.

    Keep us up on your experience. I will check back here often!!

  17. inprog

    inprog Member

    I have not been here for a while but wanted to comment how my Coagulation Defect is going. I see Dr. Laufer at the Holtorf Medical Group as it is called now. I guess it is permanent as when I stop the heparin injections and after 5 days start to feel short winded and achy as in FM. Was hoping but.. I take a very small dose and with one shot was up to speed. I take a lumbokinase/ nattokinase formula as well. I do not have high fibrin in my blood but three of the coagulation factors are off that are part of the 5 part test. Heparin, lumbokinase and nattokinase all work on different aspects of the clotting defect. Heparin would not work alone. I was fortunate to have Dr. Holtorf in the beginning. Dr. Whitman is a good doctor and maybe the person on the thread actually went to the clinic and it helped. I have also had Dr. Koftan as a doctor but he has recently relocated. He was a wonderful doctor too.

    Cheryl, congratulations on being a grandmother. Me too, coming up in January of 2012. My first and really without Dr. Holtorf, I would be a pained, obese and non-functioning "couch potato". Best to you all!

    [This Message was Edited on 12/18/2011]
    [This Message was Edited on 12/18/2011]
  18. Mikie

    Mikie Moderator

    The enzyme, Nattokinase, will work as well as, or even better, than the drugs for excess fibrin in the blood. I did the Heparin injections years ago. Once the fibrin/platelet clots break up, pathogens, which had been hiding from the immune system in them, are released into the bloodstream, waking up the immune system. When this happens, immune symptoms appear. If the immune system kills off large numbers of pathogens, there is a Herx-like reaction with sweating, nausea and profuse diarrhea. Getting ride of the fibrin can be harsh but it is necessary to healing. It gets worse before it gets better.

    I again needed to break up the fibrin and with Heparin not available to individuals and Lovenox so pricey, I looked for another alternative. The research I found on the Nattokinase claimed it to be superior to the drugs. I found this to be true in my own case.

    Love, Mikie
  19. inprog

    inprog Member

    Hi Mikie,
    My doctor has me also on a Nattokinase formula that has Lumbokinase in it in addition to the Heparin. I have tried just taking this but at least for me seem to need the Heparin too. You probably know Lumbrokinase is made from earthworms. Sounds gross, I know.
    [This Message was Edited on 11/16/2011]

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