Any one heard of Holford Medical grp?

Discussion in 'Fibromyalgia Main Forum' started by quanked, Jan 14, 2009.

  1. quanked

    quanked Member

    They list themselves as out of LA CA and SF CA. Why they were listed as service providers in Southern OR I have no idea. CFS/FM is listed as areas of expertise. What follows is their definition of CFS and then FM. I found these statements to be lacking. I plan on calling this office to see if they do travel to Oregon to provide services (forever hopeful but not sure why : ) ). Website is holfordmed.com



    Definition of Chronic Fatigue Syndrome


    Clinically evaluated, unexplained, persistent, or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities.


    Concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue:
    Self-reported impairment in short term memory
    Sore throat
    Tender cervical or axillary lymph nodes
    Muscle pain
    Multijoint pain without joint swelling or redness
    Headaches of a new type, pattern, or severity
    Non refreshing sleep
    Postexertional malaise lasting more that twenty-four hours
    Problem with the definition is that it is a research definition and excludes many people with the syndrome.

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    Fibromyalgia Definition

    A history of widespread pain. The patient must be experiencing pain or achiness, steady or intermittent, for at least 3 months. At times, the pain must have been present:
    On both sides of the body
    Both above and below the waist
    In the Mid-body-for example, in the neck, midchest, midback, or headache.
    Pain on at least eleven of the eighteen tender points
    Problem with the definition is that it is a research definition and excludes many people with the syndrome.


  2. gotdirt

    gotdirt New Member

    they are located in torrence ca. in the los angeles area. people do come from all over the world to see them. they state. I went to them for 1 1/2 yrs. spent $7,000 in that time. my insurance will only pay for $200 of that!!! and I have been fighting for them to pay that yet. these people seem to be all about the money. after thousands of dollars in blood tests they never tested me for ebstein barr or ppv 6. I marked it on one of my tests myself. they will not help you with the insurance and the your first visit will cost you $800 at least! not billed up front. don't know if they are worth all that. I'm still sick!!!
  3. dannybex

    dannybex Member

    ...is the same guy who founded the Fatigue and Fibro Centers (or Fibro and Fatigue Centers). Kind of a chain store operation.

    I can't afford their tests/treatments either, but I don't think I'd go there if I could. They take (on average) 30+ vials of blood -- a ridiculous amount IMHO -- basically overkill.

    But to be fair, I do know a guy in our local group who's been sick for 32 years, and found his first lasting improvement by going to the F&F center here in the Seattle area. Keep in mind he's on FOURTEEN drugs, and had a serious blood clot problem last spring, but he still feels it's the best thing he's done. (And he definitely seems 'better', at least while on the drugs.)

    Dan

    p.s. I personally wouldn't call Holtorf an 'expert' on CFS. When he first started the F&F Centers, he claimed many successes, but had only 3 testimonials on his original site. One of them was his own, the other was his business partner, and the third I guess was an actual patient. And his problems were mainly hormonal...he doesn't say how long he was sick either.
  4. ladybugmandy

    ladybugmandy Member

    hi all. i thought teitelbaum started the FFC?

    btw....$7000 in 1 1/2 yr isnt that bad...i spent A LOT more than that...and am still sick!

    sue:)
  5. aftermath

    aftermath New Member

    Both Holtorf and FFC are famous here for making patients spend a LOT of money.

    Still, I haven't seen many stories (if any) where people describe being helped tremendously. I would save your money.
  6. 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 one else 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 Igo.



    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.

    Cheryl
  7. inprog

    inprog Member

    I pay out of pocket completely as I have no insurance so it limits me in a good way not to take too many things and to buy supplements I might not need. I have a very sensitive body. Although I qualified for Lyme treatment from their test results, I could not afford the IV's but it did get me to thinking with who ever I interface with new ideas for treatment plus ideas of my own in my internet searching and talking to like minded friends in alternative medicine. I recently utilized the work of a medical intuitive on the phone and it was very helpful. It was nice to know I had lyme so I treat it alternatively on my own since that was all I could afford. I started in 2006 in this clinic. It was not with Dr. Holtorf himself but did wind up there quickly as my case was complicated. I progressed rapidly. Dr. Holtolf formed a new clinic called Holtorf Medical Group so it is no longer affiliated with Fibro and Fatigue centers. Research and business as its founder now occupy all his time. Any doctor there can ask questions of him if they get stumped and tons of well written research papers are available in the office where you wait for appointments. He is God's gift to CFS but then he does have it so he knows what it is like. I am happy with my care. He has a wonderful staff now of receptionists and nurses. It was not always so. Although I have severe memory impartment and mood crashes at times, they are so patient with me and don't get offended when I don't recognize or remember their names when I should. I am doing well on the hormone treatments of which I just take progesterone. Their formulation is unique, not to be found anywhere. I depend on Kutapressin of which they can get it very inexpensively. I feel blessed to have found the clinic. They make the hormones up right there in a compounding pharmacy attached to the clinic and it is the safest for me. I can't take any estrogens but have to be responsible for that with my Ob/gyn as he will see unfavorable results if I do. I am Dr. Laufer's patient now and like him very much. I save money at this clinic because no one will address Coagulation defect elsewhere and because it is treated well at this clinic, I am doing well enough to work out at the gym intensively for an hour a day if I want when I could not even do five minutes before and I have lost 40 pounds to boot and still losing.
  8. Heyygirl

    Heyygirl New Member

    I have had a wonderful year, this year of 2011. The coagulation defect was addressed 2 summers ago, and I actually spent 8 months this year, illness free! First time in 11 years going that long. I am on maintenance at this point, and only go to the clinic twice a year. I still have a few "crash" days at the onset of a virus when my immune system kicks on, but I have not had to retire, and can swim laps 3 times a week. Absolutely awesome, and I am so grateful.
  9. munch1958

    munch1958 Member

    My profile has a running history of all labs, results and treatments since 2006 when I went to the Detroit FFC. It does not hurt to see what stealth pathogens you may have floating around. They do test for all known hormone deficiencies too.

    Once I got lab work done I could take it ANYWHERE. I'm on my 5th endocrinologist since the other 4 were jerks. I am one of those people with a very low TSH but also a low T3 and low T4. I had gotten blown off by the first 4 endos who just ran TSH. This is kind of the core principal of Holtorf MD.

    Once you get the hard copy showing your problems then it becomes much easier to find treatment. Many doctors are very reluctant to run as many labs as the FFC and/or Holtorf Med. You will finally know what is wrong with you if you do go.

    I found out that I had 2 out of 3 markers for heart disease, was deficient in all major hormones including growth hormone and was on the wrong thyroid med and had high reverse T3, had a coagulation defect, and many other issues. Once these were all corrected, I am feeling 100% better. Check out my profile for details.
  10. nleer

    nleer Member

    I have seen Dr. Holtorf and Although it didn't work out for me he seems to have a good knowledge of FM and CFS. But it will cost you!!!

    He diagnosed me then gave me about 10 different types of vit. and Minerals and anti-virals, etc. which cost $600.00. None of it really helped!!!

    I am a really bad case and have alot of endocrine problems and it will take about a year or longer just to get things balanced. HPA Axis malfunction, hypothyroidism, immune disorder, etc.

    I am no longer with Hortorf Medical Group and am looking for someone close by that can help me. They are in Calif. and will treat you long distance but that's not a good idea.

    I'm not saying that they won't help you, they just didn't help me or my friend I know from Fibro Support Group!!!

    Just use good judgement and don't waist your money!

    Good Luck,

    Nancy
  11. nleer

    nleer Member

    Improg,

    I was seeing Dr. Levine in St. Joseph, Missouri who was one of Dr. Holtorf's Doctors.

    There was a disagreement between Dr. Holtorf and the Hospital Dr. Levine worked for here in Kansas City and so Dr. Levine is no longer a Holtorf Doctor.

    Now I have no place to go. Dr. Holtorf gave me Dr. Lyster to consult by phone, but she didn't really know what to do with me and I am a complicated case.

    The same thing happened to a friend of mine here and she quit the Holtorf Medical Group too. He said he was bringing a clinic to Kansas City, but I have yet to see it or here that one is coming here now.

    You really can't treat something like this long distance so it is time for me to find someone local.

    I am glad that things are working out for you, and hope someday I can be healthy again. I know what needs to be done so I just have to find the right doctor.

    Blessing to you and Happy New Year,

    Nancy
  12. inprog

    inprog Member

    Is there anyway you could follow the doctor you lost?
    (Dr. Levine in St. Joseph, Missouri) I have a friend who I researched for and two of the doctors from the Fibro Fatigue in Seattle left and patients went with them if the doctor stayed in the area. Maybe you can do this too. Just because there is a disagreement between doctors, does not mean his is a good doctor and certainly maybe closer by. I can't tell where local is and hope you did not have to come to CA from Kansas. Here is hoping maybe you can track Dr. Levine down. Then see him as a private patient. Likely he gleaned a lot from working with Dr. Holtorf.
    Best,
    inprog