Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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XMRV Advertising

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by ixchelkali, Jul 30, 2010.

  1. ixchelkali

    ixchelkali Senior Member

    Long Beach, CA
    When I Googled XMRV today to see if there was anything new, there was a "sponsored link" at the top of the page, saying
    That would be Dr Kent Holtorf's clinic, which is not far from where I live. I've looked into it, but something about it sets off red flags for me, sort of like Jacob Teitelbaum's stuff. It's interesting that there's nothing about XMRV on his website, but a few days ago I read an article by Dr Holtorf about XMRV on AOL Health. He states that XMRV is another opportunistic infection and that people with CFS get it because of reduced immunity caused by stress.
  2. urbantravels

    urbantravels disjecta membra

    Los Angeles, CA
    They're geographically near me, and I've looked into them a bit.

    Their approach to CFS and other long-term chronically ill people seems to be: listen very sympathetically, make with lots and lots and LOTS of meds and supplements, including items like custom-compounded "bioidentical" hormones, and charge cash on the barrelhead. They accept no insurance. They also have a boutique "concierge" type health care service for the rich. Kent Holtorf has also been an active advocate against health care reform, which doesn't happen to suit my personal politics.

    I think they've adopted the "XMRV" keyword tag because it's a hot topic these days, but their approach seems to be to make treatment as complicated as possible, and they sure don't have anything to offer right now for XMRV any more than anybody else does. They *may* have one or two helpful things to offer among the dozen other things they'll give you, but you'll be charged for all of them.

    Others here might have personal experience, but I concluded that the place smells wrong.
  3. Otis

    Otis Señor Mumbler

  4. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    hmmm, I was thinking Teitelbaum and CDC might need to join forces. Their theories seem similar. I guess Holtorf might want to join also.

  5. paddygirl

    paddygirl Senior Member

    Cash cow

    I've padded enough pockets, count me out.

    I'll wait for the real deal.

    Paddy :(
  6. shiso

    shiso Senior Member

    I checked out the website to his clinic early on in my illness, and the place struck me as more of a "chronic fatigue" (versus ME/CFS) place and I decided against trying the place because the advertised success story testimonials on the website by patients claiming they felt better after treatment seemed to me at the time like people who had CF from treatable thyroid or hormonal problems, carb/sugar intolerance (I forget what that condition is called) and other causes of CF, not ME/CFS.

    That ANY clinic or doctor's office would advertise about treating XMRV ("suffer from XMRV?" "relieve XMRV symptoms now" really?) at this point (when the foremost XMRV and ME/CFS researchers and clinicians have not even come out with recommendations for treatments targeting XMRV in ME/CFS) smells fishy to me.
  7. George

    George waitin' fer rabbits

    South Texas
    It's false advertising and possibility bad medicine if he is considering anti-retroviral treatments for patients at this stage of the game. I also, have a problem with Clongen advertising RT-PCR XMRV detection. It worries me that we can't really say anything against them but with our knowledge base we know that they are most likely ripping their customers off. How to protect the less well informed?
  8. valentinelynx

    valentinelynx Senior Member

    Wow. "Relieve Your XMRV Symptoms Now. Expert Doctors-Effective Treatments!" Talk about sleazy... offering effective treatments when there are no known effective treatments, none having ever been tested! Totally outrageously exploitative. This should be grounds for license revocation.
  9. Stone

    Stone Senior Member

    Do you think Admin might consider pulling his questionnaire thread from the forum? I think something is very wrong about offering to treat symptoms of a retrovirus that hasn't been proven yet to cause disease (although personally, I do believe it does, but that doesn't matter, I'm not practicing medicine on people). It's clearly unethical. While it's lovely that he's trying to help people, and we should be careful not to be overly critical of sincere healthcare providers who are simply doing the best they can to help us with an impossible illness with virtually no information and no tools at their disposal, this is over the top, and I think we should consider disassociating ourselves from this guy. My opinion only.
  10. Dreambirdie

    Dreambirdie work in progress

    N. California
    I have already posted about my BAD experiences with the Holtorf Medical Group, but couldn't find my old thread to link to. Several others had also posted their bad Holtorf Medical experiences on that thread, with complaints similar to mine. (Was that thread deleted?)

    I consulted with one of the Holtorf Medical doctor back in January of 2009. I was prescribed hormones--both thyroid (T3) and hydrocortisone (HC). The HC reeked total havoc on my system, caused severe side effects (severe anxiety, severe insomnia and worst of all--cardiac arrhythmia), followed by a crash of my adrenals that ended in the MAJOR relapse/setback that I am still recovering from to this day. When I called to ask my "doctor" what to do about the severe anxiety, I heard him rifling through some books, and then he responded that "hydrocortisone does not cause anxiety, but it can cause psychosis." As for the cardiac arrhythmia, he didn't think it had anything to do with the HC and recommended I "go see a cardiologist." In other words, he was clueless about what was going on with me, and useless at helping me remedy the crisis I was in.

    It took me 6 weeks of potent herbal therapy (4-6 capsules of Holy Basil every hour, and as much magnesium as I could handle), along with acupuncture treatments every other day, to begin to get on top of the HELLISH ANXIETY and the cardiac arrhythmia that was caused by the HC. It took me 4 months before I could get out of bed.

    Prior to my "treatment" with Holtorf Medical, I had been riding my bike 2 miles a day, doing yoga for almost an hour a day, and functioning on a minimal level out in the world. AFTER my "treatment" I was a wreck.

    In addition to being harmful to me, they were also WAY OVERPRICED--$400 per visit (well actually $395 :rolleyes:) and not worth a cent. Needless to say I would NOT recommend them.
  11. urbantravels

    urbantravels disjecta membra

    Los Angeles, CA
    Ai-yi-yi. Even worse than I thought.

    I've been seeing the Holtorf Clinic Google ads for a long while now - since I google on ME/CFS and XMRV topics all the time, and my Gmail account undoubtably has all the right woeful keywords in it to attract these kinds of ads. The Holtorf ads I was used to seeing featured "Thyroid" "Fibromyalgia" and "Chronic Fatigue" - now it seems the same ad is cycling around, with "XMRV" slotted in. They're just trying to stay au courant with trending keywords, I guess.

    There was quite a period of time when I desperately wanted to have a thyroid problem instead of CFS - even though my symptoms never really fit thyroid deficiency too well. Hey, at least it was something treatable. My conventional docs ran the conventional thyroid tests and all looked normal, in fact my TSH runs toward the low end of the normal range. But then I found that there are plenty of practitioners out there, such as the Holtorf type outfits, willing to treat you for "low thyroid" all the same - based on some dubious assertions that the conventional tests don't really show some types of low thyroid, you need the special magically compounded kind of thyroid hormone for it to really work, etc. etc. Glad I never succumbed to the temptation to go that route.

    In general I object to the "shotgun" type of approach to CFS treatment where they throw everything but the kitchen sink at you. It's not even the overcharging for all these interventions that I mind so much - but if you do a dozen interventions, how the hell are you going to know which of them, if any, is actually helping? Or harming you, for that matter?

    It seems to me what some of these "CFS specialist" practices are really selling is the chance to have someone take your illness seriously, listen to your woes, and act like they're doing something to help. In the managed care environment, intelligent sympathy from regular docs about a chronic and misunderstood illness is very hard to come by. It's difficult to know where to draw the line between a genuine effort to help patients with all the tools currently available, inadequate as they are, and a "shotgun" approach that seems heavy on the razzle-dazzle and complicated explanations.

    I think what really bothers me is the arrogance of any doctor claiming they can 'cure' or even 'treat' CFS, beyond symptom management and some willingness to make careful experiments. On the other side of that same coin is the arrogance of doctors that claim CFS isn't a real disease, just because they don't understand it or accept any biomarkers for it. "I don't know" is a hard thing for many of us to say - not just doctors.
  12. MHope


    Orange County, CA
    Holtorf Med Group Bad Experience

    I first started going to the Holtorf Medical Group just before the WPI discovered XMRV.

    At first glance, they seemed like they had all the answers; they certainly had all the supplements and meds.

    They did tons of blood work but did very little to interpret it. I asked if CFIDS was contagious and I was told that is in no way contagious...not through sex, blood, saliva etc". This gave me the relief I was looking for.

    It was during my second visit, two months after the XMRV story broke, that I asked the Holtorf doctor treating me...his name was Dr. Cofton. I asked him what he thought about the WPI finding XMRV...he really didn't comment at all. This seemed strange to me. I asked again is CFIDS contagious...and again I got the same response "it is in no way contagious...not through sex, blood, saliva etc".

    I said what about the XMRV findings...the doctor underplayed it and said there's not enough evidence. I said I have a 15 year old you're telling me there's no way I can infect her. He said said she was not at risk. He said that was their medical group's stance regarding XMRV...until more is known. I're putting people at risk if CFIDS is contagious. I said, woudn't it be wiser to assume it's contagious and communicate that to your clientel until more is known. He said XMRV could end up being nothing at all. I said nothing after that...too shocked.

    During my third visit and by this time I'd paid them thousands of dollars for meds, supplements, visits and $300 for a twenty minute phone appointment.

    I asked Dr. Cofton again where does he stand on XMRV.

    He said that it could be contagious! He was a bit alarmed to say the least...and he shocked me by saying "and what if I got it". He was more concerned that he might have contracted it than he was regarding the 17 weeks of medical leave I had been on due to CFIDS.

    He said that they just concluded their first XMVR blood draw...notice he said "VR" not "RV". He did this twice and I corrected him both times...telling him it's RV, you know...for Retro Virus.

    That scared me. It showed me these guys had no clue about XMRV. They were more like a boutique where nice looking wealthy women came in to pick up their Thyroid Rx. No one in the waiting room looked like me...I was barely able to think straight and couldn't work...and to top it off I had to pay them cash.

    I got a little pissed off when he told me they took the last patient's blood for the XMRV draw.

    I said to him, I told you about XMRV during my last two visits, and you knew little about it...and you didn't even inform me of this testing.

    I insisted on being part of the test. He said he'd have to go talk to Dr. Holtorf to get permission "to sneak me in". They ended up taking my blood. They told me they'd know the results in two weeks...and I told them that some of the other labs I had read about were taking 4 to 6 weeks before knowing the result. This made me a little concerned...I could tell they didn't know exactly what they were being their first time with this test. Nevertheless, I was getting tested...and this made me happy.

    I called the Holtorf Medical Group two weeks later, then one month later, then several more time over the next few months. They said they had not gotten the results back yet but they'd let me know. They told ME to call the lab. I said what lab is doing the test. They said Focus Diagnostics...I said give me their phone number.

    I called Focus Diagnostics, in Cypress, CA. They did not have my name on file. They did not have any reference to Holtorf Medical Group on file. They could not even tell me if they tested for XMRV.

    Then my daughter started getting the 5 times within a 6 month period. I took her to Holtorf again and said run all the blood work possible on her. I was nearly broke at this point. Shortly after this visit she developed a facial rash, her hair started to look dry and fall out...currently, she has little energy...but I'm hopeful...but realistic as well. They gave her a thyroid med.

    After that visit, I said never again will I ever go to that place...they just concentrate on thyroid conditions...that's their staple product.

    Then I saw that Dr. Kent Hortorf posted something on this website saying most of his patients that tested positive for XMRV also have other pathogens etc. I said...what kind of turnaround are they pulling here.

    They never contacted me with what my test results were...I gave up thinking I'd ever get them. It was several months of waiting. I was pretty mad. But I laughed, because The Holtorf Medical Group doctor I saw knew NOTHING about XMRV...he couldn't even pronounce the acronym properly...XMVR...not once, but twice.

    So now, out of nowhere, and all the sudden...the Holtorf Medical Group is acting like they've always been a player regarding the treatment of XMRV.

    The HMG practices under the same protocal as Dr. T. and his SHINE concept. HMG explains CFIDS as a hormonal imbalance. Never did XMRV ever come into play during conversations of any of my visits...unless I brought it to their attention.

    They caught on late in the game...and they are trying to save their business by acting like they've been players from day one on the research and treatment of XMRV...they simply changed the way they marketed their product-line. XMRV needed to be visible in order for their organization to have any credibility.

    Just look at how they've revamped their website.

    When I read the Holtorf statement posted on his website, I sent them a nasty e-mail saying they never provided me with my XMRV test results. The next day, which happens to be today...I got an e-mail from them saying my test was negative. This may sound like good news...but they were so inexperienced with that first blood draw...and Focus Diagnostics had nothing on file for them that my negative test result is suspect.

    They are over-priced. C'mon...$300 for a twenty minute phone conversation, that went nowhere...and they tend to push for these type of appointments over office visits.

    They don't return phone calls...even when I had two visits to the emergency room.

    The girls that work the front desk have NO customer service skills. They were exceptionally rude on a consistent basis. For some odd reason they act like they're always being inconvienced if you call to ask a question.

    They did not allow me through to talk to Dr. Cofton when I suffered several severe episodes. I really grew to dislike them...but I'm sure not all of them were like that...but it seemed that way.

    They insisted on charging me $75.00 in order to get my recent lab results (all six pages) sent to another doctor, that accepted my insurance.

    Dr. Cofton refused to write me a referral so I could begin seeing Dr. Chia.

    They push compounded meds from their internal pharmacy...and they do lots of lab work.

    That's the only positive thing I can come up with about them...and the office is nice...and the one nurse was always cool with me.

    That's it...honestly...that's it...and it's $300 per lab work, meds, supplements...all cash.

    And they couldn't even say XMRV properly.

    They never seeked to develop any kind of personal knowledge about me as a patient...even after filling out a 26page questionairre.

    I hear Dr. Chia is awesome in this area.

    The Holtorf Medical Group just pushes meds...and that's good if they have some type of intimate knowledge of your condition. It's not okay to be offered Human Growth Hormone just because it will give you a boost of energy...which I turned down.

    On one occasion...when I told Dr. Cofton I was having problems with my eye (blurred vision, dryness, aching pain) he simply said "that's strange"...then moved on to something it was not a related symptom of CFIDS.

    Same exact thing happend when I told him of a facial rash like rosacea that I came down with.

    So that's my Holtorf Medical Group experience...not a good one at all.

    Thousands of dollars wasted away...all for substandard medical care.

    The worst of it is my daughter coming down with the classic symptoms after they insisted it was not contagious.

    Maybe others feel different...but I would NOT go back to them...even if every visit was free.
  13. Jimk


    Cleveland, Ohio
    Oh crap! I take back everything I said in a prior post about Holtorf.:ashamed: I hate the rank opportunism of this stuff.:Retro mad:
  14. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    MHope and Dreambirdie: oh boy; sorry you guys went through all that at the hands of these guys!
  15. Hope123

    Hope123 Senior Member

    Mhope, I would make sure you got that XMRV test result on paper, in your hands. Perhaps they have the lab wrong but I have not heard of FOCUS having this test. A few labs have come and gone with XMRV testing but FOCUS has never been mentioned as one of them. If they do test for it, that's news to me. Most people have gotten tested through VIP Dx.
  16. valentinelynx

    valentinelynx Senior Member

    I am concerned about this clinic's claims, saying they are "testing for XMRV," but what are they doing exactly?. How much did they charge you for this "test"? (I read that VIP Dx's culture test cost $450). What sort of test was it? PCR? Culture? Keep in mind there are no standardized, validated clinical tests as yet. Given that, I'd be most likely to believe a result from VIP Dx, the lab associated with WPI. Several other commercial labs jumped on the bandwagon after the October Science article, offering PCR tests of dubious reliability. I would ask the clinic to provide the printout of the lab result they received from whatever lab they used, so you can find out what lab was used, what kind of test was done, and the phrasing of the negative result. You have a right to this information by law.

    Also, I found this informative statement from VIP dx ( I don't know how old this info is:

    "Although we strive to offer the most sensitive test available, XMRV is typically present at a very low-copy number and could be below the limit of detection at the time your sample is tested. Re-testing at a later date is a decision for you and your physician or health care professional to discuss and determine the best course of action. We do not recommend re-testing for 3 to 6 months." So, even a negative test from VIP Dx may not be conclusive.

    I simply do not get a good feeling about that clinic (Holtorf). If they are continuing to test for XMRV, I hope someone checks out exactly what they are doing.

    OK. I just looked at the Holtorf clinic's website. There is actually no mention anywhere on the site (that I could find) of XMRV. The only reference I find connecting Holtorf to XMRV is an article he wrote on AOL health essentially promoting their Teitelbaum-based treatment strategy. The article included this paragraph:

    "Many subsequent studies have failed to confirm the original study. Other studies have also found high levels of XMRV in other immune dysfunction diseases, including multiple sclerosis. High levels of XMRV are also found in those taking immunosuppressive drugs. Thus, the virus appears to be an "opportunistic infection," which preys on a weak immune system. An opportunistic infection is not the cause of the illness, but may make an existing illness worse."

    Does anyone know of any such research connecting "high levels of XMRV" to multiple sclerosis or corroborating that "High levels of XMRV are also found in those taking immunosuppressive drugs"? This is news to me, but would be very interesting if true.
  17. cfssufferer


    Adelaide, Australia

    I just left a quick comment on this article by Dr Holtorf. He is just misinterpreting what the immunosupressed study results meant. The study he is referring to has a summary here:
    Dr Holtorf's article is full of factual errors and erroneous conclusions so I wouldn't be reading too much into what he said.
  18. Recovery Soon

    Recovery Soon Senior Member

    I think people are begin very generous.

    If in fact this Doctor is advertising treatments for XMRV at this point in time when nothing is known about it, and I have no evidence that he is, but if he is, then he should be stripped of his Medical License.

    ON a slightly related but different topic, the F&F clinics do offer more understanding and thorough blood tests, which most Doctors are not willing to provide.

    Yet, their treatments offer little help to patients. I have said it before on this forum, but my Doctor at F&F left because "I can't emotionally handle seeing people not get better."

    They need to stop inflating their claims, and charging fortunes, for what really amounts to compassion and ineffective treatment.

    In my opinion, there is nothing they offer, or os offered in the SHINE protocol that makes a lick of difference in CFS.

    A lifestyle change and better outlook are the only things we have at this point, and they're free.

    Until REAL treatments- proven scientific treatments come available, F&F, and Teitelbaum, are are on a mad dash money grab.

    And as I said at the top, if ANYONE, ANY ONE, begins praying on XMRV patients with remedies before any such remedies have been proven, they should be stripped of their license to practice medicine and Prosecuted. :Retro smile:
  19. urbantravels

    urbantravels disjecta membra

    Los Angeles, CA
    I do note that the Google ad for Holtorf - which I still see constantly - is careful to advertise treating "symptoms" only. Treatment of symptoms is all *any* doctor can offer legitimately right now - and SHOULD be available from our regular doctors/health insurance, without paying "concierge" prices to a practice that doesn't accept insurance of any kind.

    However, handing out misinformation about XMRV, claiming knowledge of facts about the retrovirus that in fact nobody knows, claiming a test has been run and then refusing to divulge the results or hand over medical records of the alleged test? If true, all these things are very serious.
  20. Cort

    Cort Phoenix Rising Founder

    What can you say - that just sucks! Hydrocortizone is a potent drug for sure. Some doctors use it - others won't get near the stuff.

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