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Has Anyone Seen Dr. Kogelnik?

Discussion in 'ME/CFS Doctors' started by InvertedTree, Sep 2, 2010.

  1. InvertedTree

    InvertedTree Senior Member

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    From my experience with him I wouldn't waste the time, energy, or money to see kogelnik. There are a lot of doc's in the bay area and north and south who will prescribe anti virals. kogelnik is a bit of a one trick pony but with poor follow up-doesn't return phone calls, respond to emails. I saw him a few months ago and a friend also saw him. We both shared the same experience.

    I don't like bashing doctor's but I also believe in sharing information. I wish someone had informed me about this stuff. I would have saved myself $400.

    At that amount of money I expected a bit more. I get annoyed at these doc's who charge a lot of money and then have piss poor follow through.
     
    cjk's mom and Ocean like this.
  2. Claggy

    Claggy

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    Indiana
    Going to throw a couple quotes from another thread in here:

     
  3. InvertedTree

    InvertedTree Senior Member

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    Thanks Claggy. I should have searched the forum before making the appt with him. I completely agree with the above quotes. I question how much of an understanding he has of this disease. I read an account of a talk he gave which made me think he had lots to offer but really I think he's gathering info for whatever research he's doing. It doesn't help his reputation much that he published a paper against xmrv.

    I've since talked with even more people who had similar experiences so his rep in the patient community is not good.
     
  4. acer2000

    acer2000 Senior Member

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    Coxsackie viruses are enteroviruses. :)
     
  5. SirArthur

    SirArthur

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    I've exchanged around many emails (over 20) with Dr. Kogelnik over the months, sometimes he's taken a week or so to reply but he always has gotten back to me.
    I've only called the office two or three times and once he took my call while he was on a conference call. He's also phoned in prescriptions for me without my having to go to his office for a visit. And I've only been in to see him in his office twice since last year. He even offered (and has) spoken to other Doctors about my case (ie. Rheumo, Neuro)
    Sorry you and your friend didn't have positive experiences with him, but I guess it's a YMMV thing.
    And it's good as you say to share information, as all our cases are different.
    I would not go as far to call him a "one trick pony" as he offered me long term AB treatment for bacterial infections, & another treatment plan I won't identify.
    However, I will say that he definitely seems focused on his Anti-Virals and the research he is doing on the new AV's he says he has in the pipeline.
    He is far from a comprehensive CFS Doctor in that not alot will be covered or discussed in treatment options. I.E sleep meds. & alternative treatments never came up with him.
     
  6. InvertedTree

    InvertedTree Senior Member

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    It's great you've had a different experience than I and many others have had. There are reports on various message boards describing the same experience I've had so it isn't just a friend of mine and myself. It's quite a few people unfortunately. I think Dr. Kogelnik has promising potential but he needs to improve on some things. I certainly didn't get the impression he had much to offer at all.

    As you can see from one of the quotes someone posted in the thread-one person saw him and then decided to fly across the country to see Dr. Klimas because he or she didn't feel he had anything to offer. To me that says a lot. If he does have more to offer than Valcyte then he needs to communicate that. I borrowed the 'one trick pony' thing from someone else who posted on this thread or some other thread but based on my experience I would say the phrase fits.

    I spoke with another ME friend who saw him in March or April who really liked him but also didn't get the sense that there was much treatment to offer. She had a hard time getting her labs and was told by one of his staff that he would call her 'in a little while'. She never heard from him. I don't know if she went back to see him or not. If she did and has more to report I'll post.

    I don't care much about alternative treatments because there are quite a few doctor's around who can fill those shoes. I had the impression that Dr. Kogelnik was ready to start treating but after meeting with him my impression changed-I don't think he is ready to start treating for whatever reason. I'd like to be wrong but I have yet to read a report from a patient describing any treatment experiences.

    I'm certainly open to being wrong and would go to see him again to see if anything has changed but I can't afford to throw away another $400.

    I do think that dealing with sleep issues should be part of his treatment. I don't know of any doctor's treating ME that don't deal with sleep issues.

    I have 3 bacterial infections but no antibiotics were offered.
     
  7. chloe

    chloe

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    Saw him in the office 3 times because I live close. Definitely would not come from across the country. I am a health care
    professional, and he attempted to push me into studies I was not interested in after risks discussed. One of drugs carried risks of death with weird virus causing movement disorder. Side effect RARE - but no thanks! Clearly he had ego involved in wanting to publish this.

    Does not respect the importance of patient's role in making decisions within the context of informed consent. Did not even fully explain to me the role of clinic during first visit, so I walked out thinking this was just a study office. What does this place DO????? But then I came back asking him if he would treat me. He was very tentative. So peculiar!!! Then gave me drug without explaining to me that it has major side-effects. Both antivirals made me very ill, putting me in jeopardy. (That's all I'll say --- circumstances too embarassing and distressing!!) Informed consent, with stress on "informed" is very important in practice of medicine. But I wanted to believe in him and meds, and then everything would be better, right? I could go back to work, right? WRONG. Gave me prescription for Famvir of 3 grams four times day, which is a grossly HIGH dosage. I could not tolerate even 1/2 tab tid. When I had difficulty, he did not report drug reactions to pharmaceutical company --- I had to do that.

    Not sure of circumstanes, but 72 year old physician friend with CFS died after he began self-medicating with antivirals. My friend, a distinguished NASA pilot and graduate of Air Force Academy died of MI. Was it related to high dose antivirals? Unknown.

    He contradicted himself without explanation on numerous occasions, saying, "no, no Ampligen," then "Yes, ampligen." He was very judgmental on other doctors prescribing Fentanyl for severe migraine pain (24/7) --- and discussion made it clear that HE DOES NOT UNDERSTAND STATE OF CALIFORNIA'S MEDICAL BOARD VIEW OF ADMINISTRATION OF PAIN MEDS. I would not want to be his patient vis a vis pain meds because you would be undermedicated and in misery, and then all he would say, coldly, is that he can't prescribe a narcotic (false).

    He wanted me to switch to Lyrica --- and I did take Lyrica 100 mg tid but Lyrica made me very sick, ironically, with increased pain.

    Then at the end of our relationship, he declined to submit papers for second opinion. I thought I should try for second opinion with clinical virologist. Again, crazy making behavior - where he would say, "no," then "Yes, "then "No. Always concerned, he seemed that "he knows those people." ie., didn't want to be embarassed by colleaguge not agreeing or finding his knowlegebase shallow. I am worried he will sabotage request.

    Dr. K is working on other things - so perhaps he would get high marks from me for his work on whatever else he is working on - but as a clinician, I'd give him a "D." Would encourage him to put up "Suggestion Box" in waiting room" so he can learn what patients need and expect. He has not received proper mentoring on how to work in private practice context.

    When he drew my blood, I never got copy of lab report. And, I didn't get medical records ultimately until I threatened to report him to Medical Board for failure to "allow" me to take records for second opinion. Then he denied that happened. But I question that because how could his office staff get that wrong twice - by 2 different people? Office is bizzare trip. Unclear why he is interested in seeing CFS patients. He does not appear to have any special virology experience that he referenced --- either working with HIV patients, or with transplant patients.

    My eyes opened up by reading posts by individuals such as Jasper, and I feel like fool. But I am too often Bambi, and then discover I've been had. And then after you've been "Bambi," it's exhausting to switch to play the "B*tch" to get what you need --- it's emotionally exhausting. Dealing with craziness of Dr. K's office was very emotionally exhausting, and it's still not over. Regarding "second opinion" issue, he kept saying that he "knows those people," which made me think he anticipated being embarassed by patient taking second opinion request to that institution. I also feared he would try to sabotage the request, or my relationship with whomever I might be hooked up with at that institution --- or the ID virologist at that institution whom I do know and like very much.

    He ignored my time frame for the appeal for second opinion, which has screwed up my apartment lease (I was planning move back to another State) when his office seems virtually empty. Doesn't seem to care if he adversely affects you or your life. Arrogance + ignorance.

    Although Stanford has high ratings, I have often found Stanford docs not as smart or compassionate as docs at UCSF, or docs who have trained other places.

    The one positive thing I can say is that he responds by email fairly swiftly. But, an odd way to keep medical records, and susceptible to manipulation. Easy to delete. Most doctors, of course, require message to go through staff, and there is official record.

    Be careful if you go; might be good idea to bring friend so he can't claim he didn't say that. Take your own notes after appointment. Psychological abuse typically occurs in private, so open up interview process by bringing witness to the "Open Medicine Institute."

    Sad, office is disappointing because we all want it to be successful, and beyond.

    -------------------
    Sleep problems? --- would highly recommend Alex Clerk, MD in San Jose at O'Connor Hospital. Don't overstate issues of CFS, but let him do workup. I've found him to be very compassionate, knowledgeable. Have never had bad experience
    over multiple visits. Staff also very kind, and competent. Would give high marks to everyone there.
     
  8. taylorsmom

    taylorsmom

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    Dr. Andreas Kogelnick " Open Medicine Clinic"




    To all those posting about Dr. Andreas Kogelnick and Open Medicine Clinic I'd like to share my experience with you all. I was
    deeply saddened to hear about some of the negative posts and experiences as Dr. K is in the process of saving my 12 year old
    daughters life after 5 years of being abused by the medical system. Thanks to him we have a chance to see our daughter live a longer life here with us. He was our last hope after seeing doctors at Stanford before in desperation we would be forced to
    travel across the country to the NIH. We thank God every day for this visionary Scientist/Doctor on the cutting edge of a cure for
    Viral diseases.

    For those of you who don't know, Dr. K's office is privately funded. Meaning that because a large amount of his studies are cutting edge, the government and insurance companies don't want to fund him just yet. He has 5 clinics in Northern California which cost millions to run. He is not a fat cat, all of his money goes into those facilities and he is working to save patients who come to him from all over the country. He is truly a compassionate man who care about ALL of his patients. Up until recently he didn't have much extra help, because it costs a lot of money to hire associates and assistants. He has been running ALL of those clinics, and taking care of countless patients himself. So if he doesn't immediately reply to your email or phone, call its not for lack of trying. However I assure you he will when he has a moment. His heart is as big as can be. Please remember he is human and can only do so much. If I could I would donate every penny I have to help him hire the employees he needs and build a research facility for him myself. I am currently trying to find ways to raise money for his clinics and will continue on my quest until the day I die. Also please try to remember he is human so if he is a bit overwhelmed on a day you go in to see him, or are trying to get information please be patient, I know from my own experiences he WILL get to the bottom of your needs. This man will be responsible for curing Viral illnesses I assure you. I have never seen a doctor more dedicated to his patients and practice than this man. Other than our new pediatrician Dr. Bravo. We thank God every day for them both. However not even our pediatrician has 5 clinics to run. As for the 400 dollar fee to see him during your first visit, it is worth every penny. The reason you have to pay upfront is because the insurance companies will only kick in once you have a diagnoses. And like I said earlier he is a cutting edge doctor, leading researcher, and diagnostician. If the government ever wakes up and private investors realize this, we would all benefit from the millions of dollars he needs. The NIH endless funds, and I know Dr. K would be able to save hundreds of thousands of people in no time. Good luck getting into the NIH, but Dr. K will do everything he can to help you. Run, don't walk to him if you need help. The insurance company will reimburse you once you are diagnosed. So don't let that stand in your way. Also remember that he is constantly attending conferences, giving lectures, and talking to other doctors to get and give the latest information on Viral diseases such as CFS/ME etc. So yes this man is human, he is not God but if you go to him you are getting the best!

    Our daughter started getting very sick at the age of 7, we went to doctors in our area and when they didn't know what was wrong with her they decided it must be pschycological. She had recurring fevers, petechiae hemorrhages, constant headaches, severe kidney pain, swelling in her ankles, blood, protein, and other things in her urine. She was suffering from debilitating fatigue. We did everything we could from alternative medicine, to nutritional supplements, organic foods, and countless massages, chiropractic treatments to just name a few. Nothing we did helped her. The list of her symptoms are even longer, but I don't have a lot of time to write it all at this time. We took her to several doctors in LA at "the best hospitals" which was a joke. One doctor even got angry at us saying that she did not have a life threatening illness, she pointed her finger in our daughters face and told her she needed to see a psychiatrist! To which I am so thankful we had a witness in the room with us. Because we now know this so called pediatric specialist was dead wrong. We had social services called on us, and we were blamed and investigated for child abuse. Didn't go far thank God because we had documented proof that her test results were abnormal. But in the end we were told to stop looking for a reason that she was so sick. Being her advocates we did not. On our last attempt we found Dr. K. He was to be our last appointment with a doctor until we went to the NIH without an appointment. He was so compassionate, and ran tests the other doctors never thought to run.
    In short the results were devastating. But at least we now know what is wrong and he is doing every thing he can to help her.
    Taylor has Severe Natural Killer Cell Deficiency. She was born that way. The first sign of it showed up when she was hospitalized at the age of 18 months with a 105 fever and sores all down her throat and in her mouth. They told us it was a severe case of HSV. Her body is riddled with viruses she has been suffering with for years. Her pale skin, and dark circles under her eyes is because she is anemic and suffers in chronic pain. She has only 4% of her NK cells, she has Chronic EBV, CMV, and Herpes 6 her numbers are so high they don't even chart that high...in the hundreds. Her headaches are from Encephalitis. Which she has had for years. Dr. K found viral white matter changes on her MRI so all those headaches were from her brain swelling. Our daughter who is now 12 has suffered unbelievable pain, and illness with no help from anyone except Dr. Bravo, and Dr. Kogelnick. He is saving her life as we speak. So for those few who had a tough experience with him I'm so sorry, but for all those I know have been helped, and those who I have refered to him I thank God every day. And I beg you to give him another chance. This man works 24-7. His family, wife, and children hardly ever see him, because he is working to save so many.

    I would write more, but I have to run and give Taylor her meds etc. If I could I would share the whole frightening story with you which is shocking to say the least. Feel free to contact me and I can send it to you in Word format.

    For those who are contemplating seeing Dr. K and Open Medicine don't hesitate....it is worth every moment every penny every breath you still have....God Bless and I wish all of you well.
     
    Kati likes this.
  9. LHCTom

    LHCTom

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    I saw Dr Kogelnik and was very impressed with his understanding of the viral/immune based hypothesis for CFS/ME. I saw him after struggling to get worked through a reasonable list of differentials before pursuing the viral/immune CFS. If you have eliminated the long list of obvious possible causes such as HypoThyroid..... etc.. and have come up positive for 1 or more Herpes or implicated viruses and checked your IgG subclasses and seen problems, he is a good person to see to further evaluate your immune system NK and B cell function. I believe he is looking into the use of Valcyte, Epiphany Biosciences ( http://www.epiphanybio.com/) valomaciclovir ( less side effects hopefully) and rituxan. This is based on the hypothesis that CFS/ME is an immune system dysfunction where the viruses somehow have managed to turn down the NK cell activity and possibly up/miss-regulated the B cells production of antibodies. This immune dysfunction leads to the CFS/ME symptoms and the anti-virals try and reduce the viral load while the rituxan reduces the number of B cells where the viruses may be hiding in addition to being mis-regulated. My immune function is being tested and depending on the outcome, I may pursue the anti-viral ( preferably the valomaciclovir )and the rituxan if possible even though there are risks. Since my life has been virtually on hold for 7 years, I'm ok with some risk as I've tried other treatments without much luck except with anti-parasitics which I'm still pursuing as a possible cause.

    If you would like to get a sense of him prior to visiting, he did a 30 minute talk on the latest understanding of CFS/ME at El Camino Hospital last year which you can watch here:

    http://www.elcaminohospital.org/Abo...Videos/Lunch_n_Learn_Chronic_Fatigue_Syndrome
     
    illsince1977 likes this.
  10. LHCTom

    LHCTom

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    To expect an Immune/Viral CFS/ME doctor to approve or prescribe the most powerful narcotic Fentanyl and think this is abnormal is RIDICULOUS! If you feel you need that kind of pain medication - go to a pain specialist and not an infectious disease doctor. Its well known that a large percentage of patients who go around asking non-pain doctors for the most powerful pain meds are doctor shopping for the meds. Its absurd to even mention. It tells me Dr Kogelnick has a good set of ethics.
     
    SOC, illsince1977 and Kati like this.
  11. charityfundraiser

    charityfundraiser Senior Member

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    So he has 5 clinics and one empty Open Medicine Clinic Web site. And a software company he lists on LinkedIn as having run since 1997 which also has a defunct Web site and nothing on the Web about it. That's pretty amazing to run a software company for 15 years in the Silicon Valley and have no Google search results of news articles or customers talking about it.
     
  12. satoshikasumi

    satoshikasumi Senior Member

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    I am a new patient with Dr. Kogelnik for the following reason: Dr. Kogelnik is currently the only doctor in the world willing to treat neuroimmune patients with a combination of potent antivirals and rituximab. This is a very aggressive approach. The rationale is to suppress the active viral infections that compromise the innate immune system and cause CNS inflamation, while depleting the b-cells that harbor latent virus and release substances that dysregulate the immune system. The long term effects of this regimen are not known but his approach has shown a very high rate of remissions in the short term.

    Some things that patients should understand before undertaking this approach. Kogelnik stays in regular contact with the Norwegian researchers Fluge and Mella, Dr. Peterson, and Dr. Montoya. He is well-informed about the disease. He is willing to work with insurance companies and patient assistance programs to get funding for treatments and tests, but he does not directly bill insurance for visits.

    Antivirals (Montoya/Valcyte) and Rituxan (Norwegians) have been studied separately in small placebo-controlled trials and found to be effective. BUT, with antivirals patients must take them for at least six months and the clinical response takes a full year to happen. With Rituxan, it is not clear how many doses are required (Kogelnik uses a total of 6 in a year) and it takes six months to improve.

    The doses and drugs for antivirals that are effective for neuroimmune patients are toxic. With valcyte, cidofovir, and foscarnet, there is a small risk of organ failure. With Rituxan, it is known that a very small percentage of patients will die after taking the medication. With both of these, patients may feel worse when they start taking the drug.

    If you are going to see someone like Dr. Kogelnik, you have to be someone who is willing to take risks. You have to think your disease and disability are serious enough to warrant taking drugs that have a small risk of death. You have to be willing to wait at least six months to feel better. You should have a relationship with other doctors to treat symptoms like pain and sleep.

    This is a HIGH RISK, HIGH REWARD approach. If you are not this type of person, don't see Dr. Kogelnik.
     
    RUkiddingME, CBS, SOC and 1 other person like this.
  13. Kati

    Kati Patient in training

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    Well said!
     
  14. CBS

    CBS Senior Member

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    Kati, I couldn't agree more.

    I also thought the post by Satoshikasumi was right on. Especially this (my bold):

    When you are sick enough to think these risks are worth taking, you will know it. As for being the type of person who is willing to assume these risks under the necessary circumstances, I get that this is not for everyone and I'm glad that Satoshikasumi's post emphasize this important point.
     
    SOC, Ocean and Kati like this.
  15. minerva

    minerva

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    Rituxan Trial

    Hi two posters above --

    Do you know if the Rituxan trial that Dr. Kogelnik is doing requires the patient to pay for the drug? Or is it subsidized by Roche? I had heard before that it was going to cost a patient $20,000.

    Thanks for any information.
     
  16. Kati

    Kati Patient in training

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    If your insurance don't cover it, Dr K needs 2 written refusals by insurance company then he requests patient assistance from Genentech, the supplier in the US. then it is covered at 100 %
     
  17. lerae

    lerae

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    coinfections

    [QUOTEsorry. He's focused on coinfections."

    Hi Julie- when you say coinfections, are you meaning bacterial co-infections?
     
  18. satoshikasumi

    satoshikasumi Senior Member

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    It is possible to get Roche or even an insurance company to pay for rituxan, but only if the patient's lab tests objectively indicate a dysfunctional immune system, i.e. they don't cover the CFS label by itself!
    The same goes for Roche's program to cover Valcyte. You need to have evidence of a viral infection. Other antivirals are usually covered by insurance, but again you need to have some evidence.

    You will need to have a good deal of lab work done to find these things and verify that you are a good candidate for treatment in terms of safety issues. This costs at least $3,000, but they do bill insurance for labs.

    However, they are a cash-pay office when it comes to the costs of the appointments. Also, if you get Rituxan from the company you still need to pay the fees to cover the costs of the nurses administering the actual infusions.

    So, I wouldn't say this practice is a good choice for a patient who is poor and uninsured. You do need to have some means to get started. If you don't live in Mountain view, you have to be able to afford to go back and forth six or seven times in a year. But you probably don't have to be super-rich to be treated by Dr. Kogelnik- this is just an educated guess- I would say $15,000 savings is enough to do the protocol if you don't live there and you have private health insurance.. $7,000 if you live there.
     
  19. 5150

    5150 Senior Member

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    High risk, high reward? that may be a death sentence if your kidneys are already failing. good to have that info prior to doing the "high risk", imo
     
  20. Kati

    Kati Patient in training

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    5150, I am a chemo nurse, i gave Rituximab at least hundred times.

    Rituximab on its own is not likely to cause kidney problems. Other classes of chemo can cause kidney problems.

    Lymphoma patients getting their first cycle of chemo (which usually includes Rituximab) can get in trouble with a problem called tumor lysis syndrome. This is when too many cancer cells are being killed at the same time which overwhelms the kidneys. There is treatment forthat and usually these patients with large tumor burden are identified as being at risk and given prophylactic treatments.

    Of course this does not happen with the rheumatology population (and ME) because we do not have tumors.
     

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