Anyone treated Holtorf Med Group with success?

Discussion in 'Fibromyalgia Main Forum' started by brainfoggy, Mar 29, 2008.

  1. brainfoggy

    brainfoggy New Member

    I have been seeing Dr Whiteman at the Holtorf Group for 8 months. The treatments have helped but I can't afford to keep seeing him as I am unable to work. Does anyone see this doctor? I'd be interested to hear opinions of this practice. Also, are there any doctors in CA less expensive which take similar approach?
  2. padeyas

    padeyas New Member


    i was a patient (kinda still am) at Holtorf. like you i found another physician mostly due to financies. they helped me improve 20-30% with hormones and other things, but i decided to find a dr that was more experienced with the infectious source of CFS.

    shoot me an e mail at and we can discuss treatments..

  3. DesertRain

    DesertRain New Member

    I have been to Holtorf Med. Gp. 3 times now (several different drs.- the first couple had a fair or poor bedside manner, the third, Dr. O'Neill, is very sweet and supportive). I am still seeing NO results for my CFS, however (brain fog, weakness...). I'm on meds for adrenal (cortisol), T3 (for thyroid-on my 6th titration), testosterone, DHEA, progesterone- just to mention the PRESCRIPTIVE meds!

    I also have mild sleeep apnea (diagnosed thru sleep study) and upper airway respiratory syndrome which I am now trying to treat with an oral appliance. I keep hoping that when that starts to work( ie, restorative sleep), the Holtorf protocol might "kick in," I sure hope so!!! I'll update a bit later w/ the progress.

  4. brainfoggy

    brainfoggy New Member

    Still a patient with Holtorf, almost one year now. Have mixed feelings about them, currently looking to get a second opinion. Better in some ways, worse in others... Unaffordable is my biggest complaint, unfortunately we have so little options. For me, the Rest and Restore they have initially helped for sleep but stopped working. You may want to try this, also melatonin, 5HTP. I now take Klonopin, Valerian, Melatonin which isn't giving me solid sleep either so I'll be trying Lunesta soon. You might want to try Ambien it's supposed to be the best, but I do funny things like eat in my sleep so this not good!

    I hope you feel better with their protocol, good luck!!!
  5. DesertRain

    DesertRain New Member

    Thanks for your reply. I would love to hear if you do find another comparable dr. in the So. Cal. area! It's always good to have options for this crazy illness!! At this point Holtorf is the only place I know of that follows Teitlebaum's recommendations- Dr. T's book has been my CFS "Bible"!

    Warm wishes,
  6. annade

    annade New Member

    I was a patient of Dr. Whiteman's for six months and after all the medications (Diflucan, Klonopin, Lunesta, T3, Heparin shots, and probably a few others I am forgetting) and many supplements I ended up feeling worse. Dr. Whiteman was a nice man but honestly I felt like he just put me on a course of treatment that he prescribed for most, if not all, his patients and said I should be better in six months. Well, after having to go to the ER due to my body's bad reaction to the increase in T3 I decided that this was not the right approach for me. I do believe they try to help people with CFIDS/FM/Lyme, but they really seem to have a one size fits all treatment plan. When I told Dr. WHiteman that I was having a bad reaction to the increase in T3 he said it was what my body needed and I should try and ride it out. At that point I decided to listen to my body and gradually discontinue the T3 and almost immediately I felt better (no more racing heart, all day long anxiety and weight loss). There was no sense in me continuing to pay hundreds of dollars each visit if I wasn't going to follow the protocol they believed I needed.

    Since then I have found a fabulous doctor here in San Diego where I live. I actually was referred to Dr.Gersten from another member of this website. Dr. Gersten is a board certified psychiatrist and neurologist who I believe exclusively treats CFIDS. He also suffered from CFIDS for six years and is "cured." Although he is a western trained doctor he utilizes a variety of alternative treatments, most specifically amino acids and other supplements. He does also Rx meds. if you need them based on an extensive panel of tests (stool sample, urine, 24 hour saliva test, hair sample and blood tests). I know that after coming from the Holtorf Group the last thing I wanted to do was another expensive series of tests, but I really had a good feeling about Dr. Gersten after my initial two hour consultation (in April 2008) and decided to do it. I finished the last of the lab tests a few weeks ago and just scheduled my followup with Dr. Gersten for next week. I am very hopeful that he will have a more comprehensive picture of what my body needs and a treatment plan that addresses my specific needs.

    I will keep you all updated on what I hear next week. I am curious as to who you see Keith? Anyway, let's keep each other posted. Seems like there are many of us here from So. Cal. Take care all.

  7. brainfoggy

    brainfoggy New Member

    I have an appt today with an alternative/homeopathic MD here in San Luis Obispo who specializes in CFIDS, LYME, age related illness. So I'll let you know how this goes...I'm taking my labs and cocktail of meds with me to see what he says. They just increased my thyroid from 75 to 125 so YIKES! We'll see how this goes. If this does can incorporate some of Holtorf protocol and is cheaper and has more natural remedies, GREAT!

    BTW Deanna, Happy Birthday!!

  8. spiritsky

    spiritsky Member

    a patient, I think about 3 years ago now. While they did help me to realize my problems were mostly hormonal and sleep related I think their approach is basically to get as much money as they can by racking up huge bills for tests which you don't need and then turning around and giving you the same treatment they give everybody else. It's a bit of a money grab, but still I'm grateful for them in that they were a stepping stone to a better understanding and they did get me back on my feet and back to work after being totally disabled. They gave me some hope again when nobody else was helping but I do think there are better answers out there ( and cheaper too).

    I haven't seem them for over 2 years and consider myself recovered (well 80 to 90% anyway, there's always something to work on - if I could get rid of my RLS I think I would be 100%). My regimen has become fairly simple. Adrenal/thyroid support, good sleep and stay away from stress, eat healthy. And keep my copper levels up since mine tend to suffer.

    This is all I take now on a daily basis

    1) Bee pollen - 1Tbs (most important to me and helps with adrenals, throid, immune system,sleep and probably a lot of other things I don't even know about)
    2) 25 Mg Pregnenalone
    3) Gingko
    4) Coleus Forskolli (good for energy)
    5) Vitamin E, A and B complex
    6) 2mg copper (no other minerals)

    7) 400 Mg magnesium at bedtime
    8) Sometimes I still take 2.5mg ambien if i can't get to sleep.

    Good luck to you...
  9. moreinfoplease

    moreinfoplease New Member

    I'm in your area also, and would love to hear more about the local doctor you saw. I have seen ads for a couple that I considered going to see but have not had the $. I saw Dr. Friedman in LA, but for financial reasons am now going thru sansum clinic in Lompoc and Santa Barbara. However in the near future, I am considering trying someone else. With such limited funds it is hard to decide who to take a chance with. So, anyway, interested in hearing about who you tried and how it has gone. Thanks.
  10. brainfoggy

    brainfoggy New Member

    I would highly recommend Dr. Muran here in San Luis Obispo. We are all different and I don't know what your symptoms are but as far as a doc who will listen, work with you, has some knowledge of CFIDS (I think he deals with lyme patients) but is VERY dedicated. I am doing me own research on certain things now and planning on bringing him this info. They don't know everything if they did, we'd all be fixed and well. He's a nice blend of traditional medicine gone alternative/holistic which is often times what we need, a mix of the two. He was an ER doc and worked in hospice so obviously not totally in it for the $. And a nice guy, very personable! His initial fee depends on the complexity and how much time you spend with him. I am in the same boat, haven't worked in a year, waiting on disability, totally drained from this other medical practice (Holtorf) and sicker than ever. Either they aren't one top of their game, or they have purposely kept me from getting well for money, lots of it. Dr. Muran uses the best labs, has great treatments like nutritional IV'S and infrared sauna for detox. Here is his website Let me know what you decide.
  11. moreinfoplease

    moreinfoplease New Member

    for sharing the info and your experience.

    Dr. Muran is one of the drs I have seen ads for--I think regarding lyme disease, which got me interested. It is good to hear good feedback about him.

    Like you, I've already spent a lot of money seeing doctors (Dr. Friedman in LA and an integrative dr in SF) who have not been able to help me much and who have not inspired confidence either.

    At this point it feels like choosing a dr is like placing a bet, and I only have enough money to place one bet, which makes me very scared of choosing poorly.

    That said, it helps to hear personal experiences.
    I was wondering who gave you the diagnosis of chronic fatigue? Was it the Holtorf drs?

    I am just curious because one of the things I am having difficulty with at this point is that the diagnoses I have been given do not fully reflect my many sympoms and I am getting ready to apply for SSDI.

    Other possible diagnoses have been mentioned, suggested, but not put on paper.

    My main focus is figuring out the root of what is wrong with me and finding a cure (or partial cure), but now I am also trying to get someone to give even a ballpark diagnosis that reflects the severity of my day to day symptoms that are preventing me from returning to work.

    I was also wondering about which part of the Holtorf program you found helpful and are lookig to continue with Muran?

    I looked at Holtorf and if I recall correctly his approach is similar to or the same as the Fibro and Fatigue Centers. My fear there was that they used a cookie cutter approach to patients.

    I believe that Dr. Friedman, a research endo who sees patients one evening a week in LA, uses a similar approach, although he only addresses endo issues.

    He put me on florinef and wanted to prescribe growth hormone, but my insurance refused to cover it. I was uneasy about taking the GH, not sure if that was what I needed and uncomfortable with the idea of taking it for the rest of my life. Same kind of concerns with cortef which he offered to prescribe thou my tests were low normal. My concern was that I read that my body might stop producing the cortisol it was if I took cortef.

    Adding to all these concerns, was the fact that I didn't have a dr who was available to talk through the options and who would be available if problems arose.

    The other thing Dr. Friedman did was order a pituitiary MRI, which showed two very small tumors; and increase my thyroid meds (I had half of my thyroid taken out in 2003 due to hashimotos thyroidis/growing goiter).

    I had to go from PPO insurance back to HMO insurance when I stopped working and continued my insurance thru cobra, and I returned at that point to Sansum, where I had been seen in previous years.

    It has been interesting seeing how these drs who in earlier years refused to do simple tests like T3 responded to the labs I brought from Dr. Friedman.

    Minimally they have run some additional tests, I think for liability reasons, but now they have decreased my thyroid meds. I don't know yet what effect that will have if any. I'm getting a test done in the next week.

    However, I had to make a phone call to them to add the T3 test on to the lab request. Fortunately, they agreed; I anticipated there might be a fight over it.

    Anyway, I know I have written forever.

    I would love to hear more about your exp with Moran and to know if you continue to be happy with his care.

    Thanks again for the info.
  12. brainfoggy

    brainfoggy New Member

    I have never been one to gamble either, it's tough taking risks because the fear is inevitably any care becomes impossible. It's embarrasing to be broke and such major life changes, and sad that if you don't have what seems like all the money in the world for these docs, they can't help. I lost my insurance when I lost my job so I have been paying out of pocket, I'd say at least $10,000, my parents have helped which I feel horrible about. When I first got sick with EBV and knew I was getting all wacked out, my bf said go to the sansum clinic...they're really good but I knew I needed some specialist as I read about how mistreated this disorder is by mainstream med. I called sansum and no one knew anything about CFS or which doc I should see. Holtorf claimed this was an easy fix cause they were experts.

    I guess the good thing about Holtorf is that they diagnosed me right away (first visit). They gave me like you say the cookie cutter protocol, compounded T3, hydrocortisone, diflucan, aciyclovir, and a ton of marked up supplements. Alot of lab testing as well which I will never be able to pay! At first these basic things helped get me out of that initial HELL, and I had alot of hope in them, but over time the neuro problems, gut issues, toxicity have gotten worse. So last month I took it upon myself to fudge my lab and add on more things to look for such as CMV, Mycoplasma, Chylamidia Pneumonie and sure enough tested positive for two. These are often co-infections of lyme. My Holtorf doc put me on the wrong ABX, ignored alot of blatant things. When I started taking Heparin and had severe headaches and nose bleeds, would not return my calls. They market themselves well, get tons of patients and then eventually we all drop out. It's a money driven revolving door. Reading what other people have done, I thought well...MAYBE I do have lyme and not CFS. Dr. Muran is pretty convinced I do I'm still skeptical. So I'd say good things about Holtorf are their hormonal support which Muran agrees with and will prescribe. He said lots of stuff I'm taking isn't really necessary but I also think he's assuming I have lyme.

    For me, insurance wasn't even an option. If you have insurance I know of one good doctor who takes insurance in Sacramento, Dr. Michael Powell. I've heard good things about him. As far as SSDI, I think showing the progression of your illness with any labs, testimonials, diagnoses you can get help. I wrote a letter similar to one from the yahoo disinissues site, I'm in the process of appealing now. It takes a long time. You will be approved once you stand in front of a judge.

    I will definitely let youu know how it works out.


  13. moreinfoplease

    moreinfoplease New Member

    The thing I keep noticing when I read accounts by people who have gotten (some percentage) better, is that a large number of them state that at some point they were diagnosed with lyme usually in combination with other diagnoses.

    So, I have been wondering about that possibility, which is why Dr. Muran's advertisement caught my eye. But my concern is that I don't want to go to someone who gives me the cookie cutter treatment for lyme without objectively looking at what is actually wrong with me.

    You were right not to go to sansum. I was getting my treatment from them when I started getting sick. My case has not been a clear cut case with a sudden start to the illness. It has been more gradual, with periods of relative improvement and worsening, and then a worseing that resulted in me not being able to work.

    But anyway, I being was seen at sanum at the outset of that period and had a lot of trouble getting them to take me seriously. I then had PPO insurance for about 2 years and then had to return to HMO insurance and ended up going back to sansum. This time, because I was on new meds and had the lab tests from LA, they did take it more seriously, but not as seriously as I would like, and there as been attitude and struggle along the way.

    So far, I have had a lot of testing done by the endo, a sleep study (which I also had thru them in 2004), and a referral to cardiology where I got diagnosed with orthostatic hypotension thru a tilt table test. I am waiting for a follow up with neurology regarding the sleep study test which showed alpha delta sleep. I guess they are considering prescribing xyrem.

    But what I have not had is any viral testing or lyme testing. I printed out the montoya stuff and am thinking of requesting a referral to an infectious disease speialist in sansum and demanding they test me. We'll see. Fighting these fights really wears me out. I have been tempted to add tests to my lab slips. Did anyone notice that you had done so?

    When did you have EBV? Was it recently? I have spent a lot of time trying to reconstruct the course of my illness. I had a very bad case of mono, but that was over 20 years ago. I got really sick in 2001, and it was later that year that I started complaining to my sansum drs about excessive fatigue. I wasn't connecting it to being sick at that point.

    Kind of interesting though, this week I was getting saved documents off of my old computer, and I cane acriss an old email saved from then, that described the illness, and I was struck by the fact that it sounded worse than I recalled ("pounding headache, body aches, sore throat, 101.5 temp, in bed for 5 days"). Anyway, like I said, in retrospect, it was later that year that I went to the dr complaining of fatigue. I know I had periods that year when I came in late to work because I felt so bad in the am. But still, I kept my job and managed the rest of my life. So it is hard to know if that was the trigger.

    Sansum did a test for anemia, referred me to endo because my thyroid test was abnormal (already had that problem and was on meds), and then said my fatigue was either thyroid related or depression. So in the next 2 years I tried an antidepressant and had many thyroid tests that resulted in thyroid surgery, but the fatigue got worse and worse and worse--I was still holding down a job but with extreme difficulty and was taking provigil, and then in 2005 achinss got really bad. I went to 30 hrs a week at work.

    Maybe connected, maybe not, in 2004 I had a bad case of what I was told was bronchitis but which I just found out via my medical records was pneumonia. I was out of work for 2 weeks.

    Anyway, I don't actually recall any other illnesses, but I think high stress in 2006 triggered a worsening that led to me no longer being able to work. I was working full time at a job I love but is inherently stressful and also driving back and forth to the bay area to take care of my elderly/ill mother. It was just for a brief period--I had to move her to a new apartment, but it was too much. In retrospect, I still don't know what I could have done differently. There are periods like that in life.

    Now, I think one of the worst symptoms for me is the cognitive symptoms, which I think started getting worse in 2006 also--sensory overload, difficulty concentrating, difficulty with word reall, memory problems (forgetting my phone#, ect).

    Anyway, I was asking you about your EBV, but have ended up telling you my whole story!

    Interested to hear your experience!



    ps. oh thanks for the info on Dr. Powell. I did read his website, but hadn't heard any feedback on him. It is good to know.
  14. DesertRain

    DesertRain New Member

    I am also feeling disillusioned w/ Holtorf. It's been five months and NO change (if anything, I'm worse). I was promised back in Feb. that I'd be well by this summer and would have a great summer! So far, summer has been couch and bed-time-UGH!!!!! I am pretty sure I'm going to move on. BTW, did you ever feel ANY improvement on your T3? If so, do you remember at which dose? I'm on my 6th titration (87.5mg) and feel NOTHING.

    Also, wanted to compare notes w/ you and others here about Dr. Murphree in Alabama (I'm getting so desperate, I don't mind if they're out of So. Cal. anymore-just want RESULTS). I've heard some good things about him in previous threads and have spent a lot of time on his website ( and just ordered his book.

    Someone described picking a new doctor as placing a bet-that is such a great analogy!!!! Hoping we all win on our "bets" and SOON!!!

    So glad to be in touch with others who know what all of this is like. For a while I just felt like something was wrong w/ me (other than the DD), like "why does nothing work for me, why am I so flawed?" Now I know not to be ashamed, just know that this is a VERY challenging thing to treat for most all of us (except maybe those who won at their bets early on in the "game" !) :)

    Hugs of support to others suffering out there!!

  15. brainfoggy

    brainfoggy New Member

    MIP you need to quit the sansum clinic, they are screwing you around and pretty much useless. I mean those tests are good for showing abnormalities but what are they doing to make you better? They don't treat "very sick" people like us because they aren't trained to. CFS or fatigue related disorders were not taught in med school. The best you can get is one maybe having heard of CFIDS but still not knowing what to look for.

    I would strongly suggest getting updated testing on viral/ bacterial loads. See where your levels are with EBV, HHV-6, Mycoplasma, and CPN. Then if these are elevated, go after lyme. We all have similaries in how we got here. Higher stress levels, lowered adrenal functioning due to stress, thyroid issues (which can be related to chronic infection, lyme), fatigue, yeast, etc. Go after the source is all I can say, usually it is inflammation of some sort. If you had a clear cut case of pneumoniae you may have some sort of infection still, the EBV may have become reactivated at some point leading to symptoms of flu or fatigue. It's all about the immune system and obviously our inability to fight off these active or dormant infections/viruses.

    Dr. Powell focuses on the infectious aspect of our illnesses. There are older posts about him. I've heard he's very good and accepts insurance. I asked Dr. Muran this morning what he treats other than lyme, and he responded "I treat very sick people." The ones no one else can figure out. It's costly though...I leave very bitter and frustrated every time but also tell myself it's one step closer to solving the puzzle. I just had my labs for lyme this morning and $900 later, we'll see if I have lyme. He's pretty confident I do based on my previous labs and history. He is the lyme guru no doubt, but hasn't given me a cookie cutter lyme diagnosis. He put me on a ABX used to treat the CPN and also lyme for now until my labs come back.

    Hope you get the answers you need soon- Good luck.


  16. brainfoggy

    brainfoggy New Member

    Yeah they made promises like that to me too, I'd be 75-80% in 6 months. I would move on if I were you. I hope you get the answers you need soon too. Let me know how it goes.

  17. moreinfoplease

    moreinfoplease New Member

    it helps.

    I think my current strategy is to get as many expensive tests covered by sansum as I can before I leave, but it is taking longer than I would like/had planned, with waiting sometimes months for appointments with specialists.

    In the meantime keep us posted about your progress with Dr. Muran.


  18. aftermath

    aftermath New Member

    Yeah they made promises like that to me too, I'd be 75-80% in 6 months.

    If anyone makes you recovery promises, especially with the percentage of patients that respond to treatment (80% seems to be a favorite number of many "shops"), you need to be very wary. As you can see from this forum, if anyone could produce reliable results, we would all be patients.

    Dr. Levine has many detractors on this board--primarily because she paints a grim picture. I actualy appreciate her skepticism. It's a lot better than the false hope offered by so many others.

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