1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

Have here anyone seen KDM at WPI? Can you tell me about your experience?

Discussion in 'ME/CFS Doctors' started by Marianarchy, Dec 30, 2013.

  1. alexk201

    alexk201

    Messages:
    49
    Likes:
    22
    NJ

    Hi Eucalypta, did you start treatment yet? What did KDM say that you have? I am supposed to see him at the end of January.
     
  2. Eucalypta

    Eucalypta Guest

    Messages:
    55
    Likes:
    34
    lala-land
    Yes, we checked before we did the tests, these were not repeated. My doc is not a GP but he specializes in ME/CFS/FMS and Lyme as well and follows dr. Shoemaker's protocols closely, but we hit a wall with my treatment and he thinks highly of KDM and would love to work with him to 'solve' my case.

    I agree, that even though I don't pay the thousands of dollars for the tests they do exist and indeed my husband's employer is very generous with his benefits and the choice of insurance that we get.

    But it seems excises to me though to double those costs to have them done in Belgium with a 20% + of sales tax added to it. We have no sales tax in my State and we will fight this at the IRS.
     
    Firestormm likes this.
  3. Eucalypta

    Eucalypta Guest

    Messages:
    55
    Likes:
    34
    lala-land
    Hi Alexk201,

    No I did not start my treatment with him yet. His protocol is that he will do an exam, look over your history, draw blood and than after 6 weeks when the results of the tests are in the will discuss them with you and suggest a treatment.

    A good thing to do would to request your test results before the phone consult so you can go over them by yourself or with your doctor and ask questions about it. That way it's not all foreign to you if he would send them to you just before the phone consult.

    I made the mistake of not asking where the treatment is going to take place, in Reno or in my home town. Some treatments like infusions need to be monitored very carefully to control your reaction. So an inexperienced PGP might not be suitable or not feel comfortable doing that. Be sure to ask about this so you don't have to worry about that the next 6 weeks while you are waiting.

    KDM diagnosed me on top of my ME with 3 variaties of late stage TBI (Tick Borne Infections)

    I'm waiting for his reply if he wants me in Reno the end of January for treatment. If so I will let you know and maybe we can hook up. ;-)
     
    Alea Ishikawa and Firestormm like this.
  4. alexk201

    alexk201

    Messages:
    49
    Likes:
    22
    NJ

    Sounds good! My appointment is on the 29th of this month. Let me know if you will be in the area!
     
  5. maryb

    maryb iherb code TAK122

    Messages:
    2,921
    Likes:
    2,055
    UK
    @alexk201
    Hi there - just wondering how your appt in Reno went?
     
  6. Katherine

    Katherine

    Messages:
    73
    Likes:
    40
    UK
    Are you sure? I was diagnosed with late stage Lyme and he recommended oral.
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,269
    Likes:
    6,329
    Albuquerque
    I think it is individual -- I have late stage Bart and he said that oral should be fine--at least worth a try. Might depend on tests and symptoms.

    Sushi
     
  8. Eucalypta

    Eucalypta Guest

    Messages:
    55
    Likes:
    34
    lala-land
    You probably will not believe this but more than 4 months after I have seen him I still don't know.
    I had a telephone follow up at 6 weeks after that they cancelled because the time difference was 'too complicated'. I'm 9 hours behind them and they set up an app. In the middle of the night.

    They than promised he would write a report that weekend, 15 December.

    The first 3 months I emailed with his assistant almost every day. Than the stress got to me and I became depressed, could not figure out why I wasn't worth decent treatment. Maybe I was too old to score a quick success. I don't know I just never expected behavior like that from a world know expert.

    Than I emailed once a week and by now I have given up.

    I need to let it go and move on because it was driving me crazy and I started to doubt everything my right to be here, my right to treatment etc.

    At this moment I don't expect anything more from him. I'm regretting the energy I spend on getting to WPI staying in Reno for a week and the drive back. The $5000 for the lab tests that were completely worthless because my blood had been out too long.

    My Cpn, CMV, EBV, Mycoplasma, HHV-6 etc all came back negative. I knew the were suppose to be sky high because I was just tested before I went to see KDM.

    Only new elevated was my Nagalase and something he tested for Yersinia also known as pseudo tuberculosis.

    On top of that his consult costs, that he did not fulfill.

    I was the first patient he saw in WPI, maybe the ones who came after me had a better experience. I truly regret seeing him, I had high hopes and you know how stressful it is to get you hope up every time and than be disappointed. I really felt he was my last hope.
     
    Little Bluestem and Firestormm like this.
  9. acer2000

    acer2000 Senior Member

    Messages:
    612
    Likes:
    268
    Ugh well thats disappointing. I have had a similar experience with another of the CFS experts. Ordered lots of test, but I'm not sure they even know what the results mean. And by the time they get you the results they aren't likely even clinically relevant anymore. So sorry you had this experience. I know how bad it is to get your hopes up and get let down.
     
    Firestormm likes this.
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,269
    Likes:
    6,329
    Albuquerque
    Sorry @Eucalypta

    That hasn't been my experience.

    It is true that you have to choose between phone consults at about midnight to 1 a.m. or else about 7 or 8 in the morning because of the time difference, but they can't do much about that. I usually choose the late night appointments as that fits my sleep schedule better.

    For new patients his report seems to come about 3 to 4 months after the first appointment. Some of the lab tests he does for a new patient (stool DNA for instance) take a very long time to process and I found it was better to have the followup appointment after all the labs were back. It takes time for reports, too, because he is researching and traveling so much.

    I think my first labs and report took about 3 1/2 months and subsequent reports come much faster because he then knows how you respond to treatment and is familiar with your case. I wouldn't "give up"--he doesn't give up on patients and will do his best to help you.

    Best wishes,
    Sushi
     
    Valentijn likes this.
  11. Eucalypta

    Eucalypta Guest

    Messages:
    55
    Likes:
    34
    lala-land
    My phone appointment was 5am my time(PST). My brain does not function at 5am. I would not have remembered a thing he would have said nor would I have been able to ask any questions. I suggested 11:00pm, midnight or 1:00 am + 9 hours for them that would be 9 or 10 or 11 in the morning. Was not possible they said. That was time he saw real patients. That hurt me. Wasn't I a real patient? Didn't I pay the same money anyone else did?
    I suggested a few more but received a notice no phone consultation because it was problematic. I'm not making this up. I was very flexible but they weren't.

    I don't know if you were told that your report for tests was going to take so long but I wasn't. I had received my test results from the RED labs after I paid for them at 6 weeks around the second week of December and that was also the time he had promised a follow up phone consult. I had no special test on my list, the usual. But as I wrote they were completely off because of the time it took to get my samples to the lab, IMO.

    If I am told that my report will be ready tomorrow and it's not there and I write again and they have yet another excuse week after week after week, I'm sorry but at that point I'm losing my faith.
    I can accept it if people are honest with me and tell me that it's going to take 3 months but I can not deal with people who create false expectations.

    It is in my eyes ridiculous to let people who are so very ill as I am wait for 4 almost 5 months on a treatment proposal. I disagree with you that that is normal practise. I do feel he gave up on me. When I spoke to him during the consult in Reno he said I needed treatment as soon as possible before more damage would be done. Waiting almost 5 months with that treatment is not in line with what he told me.
     
    Firestormm likes this.
  12. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,692
    Likes:
    10,142
    Amersfoort, Netherlands
    Keep in mind that they do not speak English as a native language, in addition to having the Dutch tendency to not make insinuations. How would you say "in-person appointments" in Dutch or French? No idea, right? Well they probably got the closest word they could find, and I think you are being rather hypersensitive to take offense at that.

    Also those in-person appointments are typically made weeks or months in advance, so it's not exactly possible for him to cancel those for you to get your phone appointment. I don't think a two hour window is particularly flexible of you, when that would require him to rearrange other in-person appointments were people are traveling long distances, and where the clinic is set up to have a certain schedule with different types of appointments at different times.
    I had a problem with this as well. After the followup visit where I was informed of my diagnosis and abnormal results, I was told I'd get the report in a week, but it took something like 6 weeks. We called every week or two, and eventually emailed. I think part of their problem was that additional data had to be added to the report (CPET results) from the same day, and it got translated into English for me. I think more of the problem is poor communication and possible under-staffing at the clinic, especially while KDM is in the process of getting things started up in Nevada.
    Really? Most people go years and decades before starting treatments after being diagnosed, if they ever get that sort of treatment at all. Some ME experts have waiting lists in excess of 6 months, if not a year or more. ME experts are also extremely busy - basically constantly booked up seeing patients who can't get treatment locally. Hence I think such a delay is reasonable, even if they are at fault for giving us expectations that treatment can begin sooner.

    I also think you're being overly dismissive of your results. Yersinia can become a chronic infection, especially if you have a tendency for elevated iron levels, and it can be quite nasty. Additionally, abnormal Nagalese is often an indication of some immune dysfunction, and some infections are capable of suppressing normal immune function, hence causing false negatives because an infection has essentially switched off the ability to respond to infections.
     
    Sushi likes this.
  13. Eucalypta

    Eucalypta Guest

    Messages:
    55
    Likes:
    34
    lala-land
    Valentijn. I appreciate your opinion and defending professor de Meirleir's way of working.
    This will be my last reply on this subject, I refuse to be pushed in the guilty by stupidity corner.

    You first point about them not having English as a native language is true, English isn't my native language either, I'm Dutch so I didn't have to speak English with his assistant Ira de Smet or with Professor de Meirleir himself. We had our conversations in Dutch or in Flemish.
    So that's a moot point. I pretty sure I understood very well what she said.
    Let's not forget that my appointments were also booked weeks ahead and they misscalculated the phone consultation, time wise.

    I gave them a 6 hour window. 11:00, 12:00(midnight) or 1:00 in the night for me and I also suggested 8:00am, 9:00 am or later which would mean after business hours in Belgium but this was not an option, I also suggested the weekend, knowing he writes his reports on weekends, I also suggested to have a conversation when he was back in Nevada, end of January. But I guess that is not flexible enough. I wonder what your suggestion would have been, time related.

    A clinic staff as experienced as his is, he told me this himself, should be flexible enough to have another time available for a phone conversation that is not in the middle if the night. Keep in mind I have a reversed sleep cycle and my sleep hours are not like the regular ones. I fall asleep around 3:00 or 4:00 am when my cortisol is at its lowest point. I do not function at 5:00 in the morning and quite frankly I'm more than fed up about having to defend myself about this.

    My point is, if he could discuss my results with me 6 weeks after my initial consult during a phone or Skype conversation why should I have to wait 4 months for a dictated result? Seems to me it will take the same amount of time that was reserved for my phone consult. Instead of talking to me he would dictate it and it would be send to me with no options to ask questions.

    Wrt to waiting for treatment. You don't know me. At all. I have been ill since 1970 when I was 17 years old, was diagnosed in Enschede by professor Rasker with Myalgic Encephalomyelitis in 1980 which at that time was a legit illness in the Netherlands. Don't lecture me about going decades without treatment because I have, up to a point that I'm bedbound and in an almost vegative state.
    I moved to the USA in the hope on better treatment options. I know all about waiting lists and how busy experts can be and how disfunctional an office staff can be. I was on a waiting lists of one of those experts for over a year and another for almost 3 years. I contacted prof de Meirler's office and got an email from mrs.de Smet that prof de Meirleir wanted to see me in Oct in Nevada.
    I do not get up and fly to Nevada. I can't even walk to the kitchen. My husband rebuild our truck and made a bed for me to lie on while we traveled for 15 hours. I guess anyone can imagine what this did to my condition. Even though I could lie down the difference in elevation traveling over the passes caused major post external malaise.

    You must have heard about those severely ill patients that loose hope and are on the brink of suicide. Well I was/am one of those. I wonder how hard you would fight after being ill for almost 40 years without any improvement and more than once seeing death in the eye. Do you roll over and give up and wait till the expert finds the time to let you know his treatment protocol and risk going backwards every day or do you fight with all you got and try to get treatment for this new diagnose and new infections as soon as possible before the infection totally has ruined your heart and your dream of ever seeing and holding your grand kids in the Netherlands completely?
    On second thought, don't answer that.

    Also no need to lecture me on Nagalase and Yersinia, after 40 years of ME and advocacy and doing research I'm well versed in reading my own test results.

    In case anyone is wondering if I wrote this report about seeing prof de Meirleir to complain about him, no I did not, I still think he is a brilliant physician. I wrote to warn other people who want to see him not to have the same expectations as I had. Heck even my local doctor is baffled by the lack of response and has offered to contact him. So no, I don't think it's normal practice, not according to the people I spoke to health care workers and patients who are seeing other experts. Once they have a diagnose they get treatment and are not kept hanging for months, no matter what you say.

    Be well.
     
    Iquitos, Tito and Firestormm like this.
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,269
    Likes:
    6,329
    Albuquerque
    Hi @Eucalypta

    I had spoken to many other patients before my first appointment so I knew that I would wait 3 to 4 months for results. As @Valentijn said, it is a choice of waiting 6 months to 3 years for a first appointment (with some of the other specialists) and seeing KDM in after about a 2 month wait and then waiting 3 to 4 months for your labs and report. All these specialists are extremely busy and this is about the best they can do! KDM certainly realizes how ill we are (his daughter has the same illness) and there has never been any hint of "age discrimination." I think it is true though that the staff underestimates the wait time. I just didn't ask because I knew "the reality" from other patients.

    I also knew (from researching with other patients) not to make a followup appointment until after I had received my report and labs--so I waited several months for this. It was worth it because then he had the information to initiate a treatment plan that has helped me a lot. He is not usually willing to initiate treatment until he has had the time to analyze all the test results. This is a precautionary measure which I appreciate.

    I do not phone or email requesting my results because I know they will take a long time--they have always come and been worth the wait. If you did the stool test that is a very "special" test as it is only run in batches of 100 and gives DNA results for about 70 bacteria--it takes long time, especially if you are one of the earlier patients of "the 100" and they have to complete the batch.

    I have also never had a problem with my labs being "off"--they always seemed to be in line with other labs I had had and over the years and the results reflected the results you would hope to get from treatment.

    Ira is not exactly his "assistant" (I know that they refer to her as such at WPI though)--rather she is the staff member who has been assigned to make the US appointments. Her role is clerical and she communicates with patients from that perspective. Opening the office in the US has given her an extra workload.

    I'm sorry you had difficulties scheduling phone appointments. All I can say is that I never have had this problem and I have had many, many phone appointments. In order to make sure there are no miscommunications about the time difference I always give them the "my window" in Brussels time and there has never been a problem in scheduling.

    Suggestion: why not just wait until you have your report and copies of your labs and any prescriptions suggested, and then make a phone appointment to discuss any questions that you have? Or, the report may not raise more questions for you and you can simply begin the suggested treatment?

    It is true that time lapses like this would not be typical except for an illness where there are so few specialists and those specialists are trying to see as many patients as they can (out of compassion and the attempt to treat a very complicated illness). In this situation there will be waiting. It is sort of the "norm" for an ME specialist, though, of course, we would like it to be different.

    Best wishes,
    Sushi
     
    SOC, snowathlete and Valentijn like this.
  15. maryb

    maryb iherb code TAK122

    Messages:
    2,921
    Likes:
    2,055
    UK
    @Eucalypta
    I'm so sorry to hear of your experience. I think we have to respect patient's suffering regardless of how a doctor works. Your journey to see KdM sounds to have been such a hard thing to achieve, reminds me of another patient who travelled to see Dr Peterson the same way.
    I've been disappointed in several aspects of treatment/communication and had to accept that's just the way it is. too many patients not enough time etc etc but it doesn't help when you're suffering.
    just wanted to say I understand and hope you get your results and a treatment protocol soon.
     
    Iquitos, Tito, snowathlete and 4 others like this.
  16. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Valentijn and Sushi like this.
  17. serg1942

    serg1942 Senior Member

    Messages:
    348
    Likes:
    350
    Spain
    Hi Eukalypta, I just read your post...I am sorry you had all these problems. I understand what is it to travel to see a doctor and not been helped at all (I traveled from Spain all my way to the USA...). Thank god I lived a wonderful experience with marvelous people, aside from my medical care! But I don't think this is your case, as you are going to have your treatment, right? (I hope so and I hope it goes very well!)

    I have seen KDM regularly for the last 3 years. His consultation is now 70 euros and it lasts no more than 15 mins (top!!!). I wish I could have 90 mins with him... You can imagine how hard it is to go there, with poor sleep, after traveling from abroad, and of course in English... It's a hell of a day., and I don't know and I don't want to know how much clonazepam and caffeine runs through my veins in every visit...:wide-eyed:

    But as Sushi said: it was my decision. I already knew how he was, and how the timing for tests etc. usually were. He likes to do his own tests, in the labs he trusts, and wait for all the results to be ready, and then to write a report. The first time it took almost 4 months for me... The next following-up appointments, tests' results and KDM's reports, have been much more agile.

    I don't think you have been diagnosed with 3 more things on top of ME. Rather, these infections seem to be close to the heart of ME, maybe the problem itself, or at least a very "close terrain" necessary to treat. Also, with your Nagalase high, you might probably benefit from GcMAF, and so far in my experience it's the most successful treatment for CFS, both in results and in the percentage of patients it helps.

    Well, just wanted to let you know my experience and my opinion, for what it is worth. I hope they improve soon the facilities up there in Reno.

    Best!
    Sergio
     
    Alea Ishikawa, justy and Valentijn like this.
  18. alexk201

    alexk201

    Messages:
    49
    Likes:
    22
    NJ
    So sorry to hear about your experience Eucolypta. I can imagine how difficult it must be. Just hang in there. I had my appt. in Nevada at the end of January. He seemed very relaxed and not in a rush, as the appt. lasted around 90 min.
    I recently spoke to a RED labs rep and was told that the testing takes about 2 months to complete. With the stool test being the last.

    I don't see the reason to have to wait 4 months to get the results back. That is not standard practice. Here is the breakdown of the times:

    MSA test: 8 weeks.
    All the PCR tests (like brucella, etc.) take standard 7 weeks

    In conclusion, Humminitas has all the results after the initial appoint in 2 months.
     
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,269
    Likes:
    6,329
    Albuquerque
    Yes, that is the theory! But I have tracked some of those tests with REDlabs and in fact they didn't get to Himmunitas in the time promised. After my first appointment Himmunitas had not yet received all my test results over 3 months later.

    A few factors may be in play: 1) lab underestimates their volume of patient samples, 2) some positive PCRs are then sent to GIGA sequencing, so more time involved, 3) the MSA is run in lots of 100--if your's is one of the first samples in the lot, you will have to wait until they have 100 to run it.

    For me it works better not to have a time-line in mind cause it rarely works out as expected!
    Sushi
     
    serg1942, alexk201, SOC and 2 others like this.
  20. NHjane

    NHjane

    Messages:
    8
    Likes:
    9
    Hi this is my first time posting (to any forum ever!) tho i've been stalking (kinda negative term for reading and learning...) PR's wonderful forums for a while now. Thanks to all of you for sharing - it is REALLY HELPFUL!!

    My 29-year-old daughter has had CFS/ME for 8 years. We saw KDM in Reno last January and yes, waited way longer than he'd said for test results. But we both liked him a lot and think he certainly knows his stuff.

    After first batch of test results, he ordered LTT test from InfectoLabs which confirmed his suspicion of Late Stage Lyme (tho she'd been tested several times previously in other ways for Lyme, and even treated for Bartonella and Lyme via oral abx with no improvement two years ago). However doing this test as an afterthought has delayed treatment even longer.

    Since April we've known that he recommends IV abx - similar to what many of you are told: 6 weeks Ceftraxione, 6 weeks Azith...We've been trying since then to figure out how to accomplish this. We live in the NY metropolitan area (in NJ), and have an easy place to stay in New Hampshire. We've now exhausted every possible doctor in these 2 locations who are seeing new patients. None are willing to do someone else's protocol. I understand why, but all we really want is someone to put in a PICC line and prescribe us the meds (since KDM's prescriptions don't seem to work in the US for us).

    Now we've decided the only way is to go live in Reno for the few months. We've tried for WEEKS - several phone messages, emails, etc. - to get an appointment with the doc on staff at WPI - P0r z@n - to no avail. WPI's website (or Facebook?) at times has said "Reopening in Sept. 2014" - that's scary!

    So - is anyone still going to WPI? Do you see one of the other docs on staff or do you wait for KDM? Do they do the IVs for you? How, if the doc is only there 3 days/week? Are they responsive when you're Herxing and need help? Can you eventually go home and continue treatments without any other doctor, or do you need a local doctor for emergencies? If the latter, how do you find one who'll follow another's protocol? Yikes this feels so hard, and I'm not even the sick one with exhaustion and brain fog!

    (Thanks for listening...Sorry the end is a bit ranty but it's SOOOOOOOO frustrating!)
     

See more popular forum discussions.

Share This Page