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The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
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Dr jan venter

Discussion in 'ME/CFS Doctors' started by jasmine, Jul 17, 2010.

  1. Kati

    Kati Patient in training

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    I don't want to give these guys publicity. so I won't publish their website. If you check it out, one sells vitamins, and both of them are much much involved in private services that are not covered by medicare. They are using technologies that are not recognized by MSP and are heavy on vitamin infusions and what not. They recommend Wii fit and are associated with a fitness center! At the June conference, Venter said there was a Lightning Process study in progress for CFS and FM patients. Doesn't that raise the hair in the back of your neck? It does for me.

    So let's make it clear, we have 2 scientific studies proving the presence of a retrovirus in blood of CFS patients. In the last 25 years, biofeedback, LP, vitamins, counselling, exercise has not helped in getting us better. These will not eradicate a retrovirus and get you back on your feet.

    Give me a real doctor. I have paid my taxes, paid my MSP, has served the public as a nurse. Why is it that I don't have access to health care?
     
  2. Kati

    Kati Patient in training

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    Just so you know I am exploring the possibility of complaining to the BC Human rights tribunal for the lack of health care in BC. If someone is interested or has considered going in this direction, please contact me.
     
  3. Impish

    Impish Senior Member

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    Victoria, BC
    So what we need is to know for sure that they demand patients go to an "information" session before they can see them. If they are doing that they are in violation of the health act and we can do something about it. Is that what happened to you?
     
  4. Impish

    Impish Senior Member

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    Victoria, BC
    I wonder if going to the media might not get better results. Again, we would want to make sure the facts are all figured out first. If you hand a reporter a story wrapped in a bow they will ofter run with it.
     
  5. Kati

    Kati Patient in training

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    I have pitched my story to the Vancouver sun this week end out of total frustration.

    I have received a letter from the governemt (BC health ministry) to let me know that Dr Klimas's care was not approved in BC and they have plenty of specialists here in BC to take care of people like us (huh??? What did I miss???)- I need to reply to them and ask them what are their standards of care for us PWC and also who are the said specialists cuz I can't find any.

    No doctor to prescribe imunovir, no doctor to care that Coxsackie B is activated, and so are Parvo B, EBV and HHV6. They don't seem to get excited that my NK cells went down from 100 to 60 in the space of 6 months. Nor that they seem to know what the particular cytokine pattern means.

    I mean I am paying into this medical service plan and no one can help me- what is wrong with this picture?
     
  6. helen41

    helen41 Senior Member

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    Sleepy Hollow Canada
    oh no, Kati! That is awful!
    Have you thought about trying a Canadian online purchase? The site I looked at says they will fill US prescriptions but will just have them approved by their Canadian Dr. Not a great solution, but maybe worth investigating
     
  7. Kati

    Kati Patient in training

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    I have phoned the Rivex guy who takes care of Imunovir. He suggested me to have a US address he could send it to - using Nancy's prescription.
     
  8. Daffodil

    Daffodil Senior Member

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    kati..i am sorry to say i am not surprised at all. thats why i didnt waste any precious energy writing to the ontario ministry of health. socialized medicine countries are not gonna pay for an emerging disease where the cause hasnt been established.

    when i was a little girl, my mom took me to eye specialists when we went to houston on vacation...and ontario govt paid....and there wasnt really anything wrong with my eyes, just myopia. back then, they were a lot looser with their money!
     
  9. Val

    Val

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    Hi all,
    Yes, I have been seeing Dr. Venter since 2005 when he was out on West Broadway, then he was at Orchard clinic in Burnaby and now he has his own clinic out in Point Grey where he can focus on his CFS, Fibromyalgia patients. I can't say enough about how great he is. He is the best doctor out there dealing with CFS. Whereas most general practioners know nothing about chronic fatigue, Dr. Venter totally understands and knows all about it. He is constantly keeping up with all the lastest developments in the research and treatments. I got severe chronic fatigue back in June 2003. It was so bad I was literally a vegetable experiencing long periods of paralysis. My family doctor, (who is a good doctor), gave me various tests which of course all turned out to be "normal": therefore; he could do nothing more for me. I saw a Naturopath who tried various things which normally help people who are tired but nothing made a difference in my case. Then by fluke my aunt in Calgary was listening to the Dr.Art Hister show and lo and behold Dr.Venter was a guest. She pasted on the info. and I was able to start seeing him. Although I thought I had been tested for everything under the sun- it turned out I hadn't so he had me go for numerous bloodwork and even an MRI to rule out any possible causing factors for the fatigue. He is an excellent doctor who truely cares for his patients and genuinely wants them to get better. He actually takes the time to hear you out and to explain things to you. He has truely been a lifesaver. I shutter to think how I still could be how I was 7 years ago. I have made huge progress-still have a ways to go but everything is moving in the right direction and that's because of Dr. Venter. I would insist that anyone who actually has CFS or Fibromyalgia see Dr. Venter. Yes he does collaberate with Dr. Hymes out in Maple Ridge (and no you don't need to take the Albion Ferry anymore the new Golden Ears bridge has replaced that). Dr. Hyams has been in the field longer than Dr. Venter and I did see Hyams a couple of times but I honestly didn't care for him as much (no offense Dr.Hyams) and I did find his receptionists to be scattered and clueless a few times (once we had a trip all the way out there for a "precription" according to the receptionist ) only to find out we could order the supplement on line or over the phone. Dr. Hyams also only sees CFS patients one day a week so scheduling can be an issue. Anyways, I totally recommend Dr. Venter and now that he has his own clinic you can book an appointment there Monday, Wednesdays and Fridays. He is totally legit so no worry there although I can understand new patients being concerned about paying the 350 for the new patient seminar but this includes a variety of things and would be an excellent crash course for you and family in knowing how to approach CFS. I think one of the scariest things about chronic fatigue is that you feel so helpless and your loved ones don't understand and don't know what to do. So if Dr. Venter had had his clinic set up 5 yrs ago and had been offering the seminars at that time, it would have saved me a lot of aggravation! At any rate, I have found him to be very understanding of my family's low income situation and has worked around it. I'm sure that if you can't manage to do the seminar you can just see him on regular basis and learn as you go. Of course appointments are covered by MSP but as with all doctors (including Naturopaths) any vitamin injections, supplements etc must be paid for, any special treatments such as neurofeedback are not covered. Luckily this past year my family was able to afford to have my brainmap done and undergo subsequent neurofeedback treatments and this has helped me big time. I have had a lot of improvement and was actually able to visit some relatives in the Maritimes this past summer- something that was totally unthinkable before. Wow, I have written a book here! Anyways check out Dr. Venter's website F2c2.ca you can always email him any questions you have and he does appointments over the web too. Best of luck to all you out there dealing with CFS!
     
  10. helen41

    helen41 Senior Member

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    Sleepy Hollow Canada
    Val- thank you for the "book" you wrote. It is always helpful to hear reviews of people who actually have been through the process. Even if Dr Venter remained within the health system just reading Chris' post about a 3 hour orientation takes the possibility right off the table for me, and I suspect a lot of others. If I could do 3 hours I'd be calling myself cured...
    What does Dr Venter say about the XMRV and MLV findings?
     

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