Dr jan venter

[jasmine]

Hi,
I am new to this forum! wanted to know if anyone has had experience with or heard of DR JAN VENTER and the CFS clinic in vancouver, bc???
please let me know good or bad anything you know about him!
thanks

 

[helen41]

Hi Jasmine. I'm from BC as well, and just posted a question about Ian Hyams, who runs the sister clinic to Jan Venters. After a whole lot of tests and a variety of Drs (one of which was a rheumy who said there was no such thing as CFS), my GP didn't disagree with me last week when I said I thought I have CFS. I guess that's progress. The question is, what now? In my search on the two Drs, it sounds as though they do use some techniques that are not in the mainstream, and I still haven't done enough research to satisfy myself as to whether that makes them brave, well informed and on the cutting edge, or using techniques that don't have adequate testing behind them. It's such a huge topic with so many contradictory opinions it's hard to know what to do. I'll be watching to see if you get a response

 

[*GG*]

Wow, looks like you live in a Beautiful area Helen, Have you heard of this website?: http://www.co-cure.org/CAN_BC.htm

I mapquested your location to the location given on the website and it is 3 hours! Appears by ferry?

 

[Chris]

Hi, Jasmine; I have looked at the Venter website (I live in Victoria, so am potentially interested) and most of it looks pretty dubious to me. But he does have a form of plethysmography (impedance cardiography) which I would love to have done; I phoned, and was told I would have to sit through a 3 hour group session (cost I think $300.0) before getting (maybe) a session with the plethysmograph, and so declined. You might PM Kati, who went recently to an info session that included Venter. She was not impressed. Chris

 

[Kati]

Recently I showed up personally at Dr Hyams clinic and asked to get an appointment with the doctor in order to get imunovir prescribed. I have spent a lot of money to travel to Dr Klimas and get recommendations that my own family dr does not want to follow. I was told I could not see the doctor without seeing the nurse who would take my history. In our socialized health care, a doctor visit is free. Now they won't let me see the doctor without seeing the nurse which is not free. The staff- 4-5 people were standing at the desk and casually chatting and laughing, and no patients in sight.

Following the presentation of Dr Venter, which is Dr Hyams colleague, they seem to go on the private side, wanting to charge money for vitamin and other infusions, tests that are not recognized here in BC and Canada.

I refuse to go see them. Our health care is supposed to be free for all, even us, CFS patients.

 

[helen41]

interesting, Kati. I was thinking of going there and called to ask some questions, but the staff member I spoke to didn't have answers that made me feel confident so I didn't go.

 

[leelaplay]

Jan Venter seemed proud to announce that he would be doing a trial of the Lightening Process for ME/CFS at the MEFM BC workshop this year.

 

[Kati]

Helen, have you tried the ME association of BC??? I am at the point at this time where I need local support.

 

[helen41]

After looking around with little satisfaction or direction, I decided to concentrate my efforts right now in getting objective measures of this illness. I actually am in California right now at the fatigue lab. I've had the first days exercise test, and my muscles are burning and in spasm, but I'm not stupid with the malaise yet. Once I finish and get over what I fear will be a brutal backlash, I'll post my experiences.
It won't do anything in terms of treatment, but I do hope it will give my complaints some credibility both with LTD and the medical profession

 

[Kati]

Helen, thanks for sharing, glad you took the step. Please keep in touch and give news. I am in Port Moody!

 

[Impish]

I am in Victoria. I don't have CFS but my sister does.

Nothing pisses me off more than frauds trying to take advantage of sick people. CFS sufferes in Canada should be able to get treatment under our health system. It clearly sounds like this clinic is structured to extract money from people who are in a situation such that they can't afford it. That is awful. Early in my sister's illness she saw the doctor out of Ottawa associated with Nightingale foundation. I don't know if he is still practicing or not?

 

[helen41]

Impish, I looked into that but it's 1-2 year wait. That still might be a step I decide to take- I really am hoping that with the recent papers being released that the floodgates will open and new resources will pop up soon.

 

[Kati]

Impish, Dr Hyde is probably the person you are talking about in Ottawa. He is charging 3000$ up front for the work her does when you are not in his office. While I understand that there are fees for his work, paying up front to be on a waiting list and getting an appointment 1-2 years down the road was not appealing for me, so I went to see Nancy Klimas in Miami.

I have gone through the process of getting the expenses paid by MSP, but the answer I got was "this is experimental treatments". I wish I had the energy to fight with them, but I don't!

I am very frustrated by the care I have got so far here in Vancouver, my background is in nursing, so I know the health care system. It's been 22 months of illness so far, and no care, other than Dr Klimas, and my family dr doesn't want to follow her recommendations... what now?

 

[Impish]

I quickly did a bit of research on the other doctor mentioned. At one point he seemed to be fairly impressive. I notice he was involved with Ampligen which WPI is now as well! Here is my source... http://www.ncf-net.org/conference/2000.htm

A CLINICAL TREATMENT MODEL FOR CHRONIC FATIGUE SYNDROME PATIENTS

During this session, Dr Hyams will present a practical approach to manage Chronic Fatigue Syndrome (CFS) patients, based on the generally accepted understanding of the pathophysiology underlying CFS.

The model is designed to treat patients multi-systemically, including neurological rehabilitation, appropriate immune modulation intervention, managing the underlying metabolic dysfunction and addressing the neuroendocrinological changes occurring in this illness. Occasionally, dental and/or gastroenterological interventionmay be required. Dr Hyams will outline a methodical approach to treat patients and this type of model is used both in the USA as well as in Europe. Teitelbaum et al have confirmed clinically significant results of patients being treated on a multi-modality treatment programme and this appears to yield better results than any single treatment modality, on its own.

Dr Hyams will emphasise management based on clinical outcome studies as well as suggested treatments discussed at peer reviewed conferences. He will also discuss the paradigm shift occurring in the management of chronic illnesses such as CFS involving integrative approaches combining orthodox medicine and the need for scientifically based nutritional medicine. During this discussion, he will allude to some nutritional approaches, although this will be dealt with more extensively during the separateworkshop to be held on Sunday 25th April. Reference will be made to some of the proposedclinical treatment trials which will hopefully commence in this country shortly.

This treatment model is currently being introduced to the fatigue service at the National ME Centre as well as the Havering Hospital Trust.

Dr Hyams is specialised in the management of chronic fatigue syndrome, fibromyalgia and related disorders. He is currently appointed as the Assistant Clinical Director of the National ME Centre and also one of the specialists treating this disorder as part of the Havering Hospitals Trust. He is originally South African and directed a large specialised clinic, exclusively serving the CFS population in the Johannesburg/Pretoria regions. He was offered a prestigious position directing research into CFS at the Cheney Clinic in North Carolina, USA. Dr Hyams and Dr Cheney worked together for two years before he took up his current post. Dr Hyams wrote for the CFIDS Chronicle, the American Journal of the CFIDS Association of America, on a regular basis. He has also lectured extensively on CFS and co-authored publications and scientific presentations in fields relevant to CFS. Dr Hyams has also been involved in the Ampligen trials in the USA and will be involved in the introduction of Ampligen to this country. Dr Hyams was elected onto the scientific advisory council of the CFIDS Association while in America and he has also served as Chairman of the CFS Association of South Africa and also the National Research Foundation. Dr Hyams has been recently interviewed by Action for ME.

 

[Impish]

Impish, Dr Hyde is probably the person you are talking about in Ottawa. He is charging 3000$ up front for the work her does when you are not in his office. While I understand that there are fees for his work, paying up front to be on a waiting list and getting an appointment 1-2 years down the road was not appealing for me, so I went to see Nancy Klimas in Miami.

I have gone through the process of getting the expenses paid by MSP, but the answer I got was "this is experimental treatments". I wish I had the energy to fight with them, but I don't!

I am very frustrated by the care I have got so far here in Vancouver, my background is in nursing, so I know the health care system. It's been 22 months of illness so far, and no care, other than Dr Klimas, and my family dr doesn't want to follow her recommendations... what now?

Ouch... Sorry to hear that he is charging so much. My sister saw him a long time ago (she has been sick since 87) and at that time I don't think he was charging anything (although it is possible my parents paid something and I just didn't know anything about it).

Dr Hyams sounds like he might know what he is doing (see my other post).

I actually did my MBA disertation on a health care related issue and spent a fair amount of time and effort researching how health spending decisions are made. There is a need for gatekeeping or our publically funded system would rapidly go bankrupt (as it sounds like you know that comment is as much for other benefits). That being said, it is really really frustrating when you are sick as you can attest to.

As to getting money out of MSP, what would the next steps be? Would it be worthwhile for a group of people who have CFS in BC to start to lay the groundwork to be able to get treatment sooner than later? I suspect we would need to have the science a bit more firmed up but you never know given the article written by the Canadian researchers in PNAS?

 

[Kati]

Impish, what makes me really upset is Dr Hyams and Venter both have a study going on in regards to Lightning Process. They also hold group sessions that I suspect are mandatory (300$) on nutrition, lifestyle, and all the stuff we already heard of. I believe they also sell their vitamins. And that is a big red flag right there for me.

Impish you said:

As to getting money out of MSP, what would the next steps be? Would it be worthwhile for a group of people who have CFS in BC to start to lay the groundwork to be able to get treatment sooner than later? I suspect we would need to have the science a bit more firmed up but you never know given the article written by the Canadian researchers in PNAS?/QUOTE]

That is really interesting question. I think it is time for people in BC to start advocating for real health care and for real specialists. It is despicable that the patient themselves have to look around for a doctor that will understand what is going on, and also adds cost to the system when we are shopping for doctors.

My suggestion: building an e-group for people with ME from BC. Write to MSP, write to the College of Physicians, write to your regional paper.
Public demo in Vancouver and Victoria-

Let's keep the conversation going.

 

[Impish]

Impish, what makes me really upset is Dr Hyams and Venter both have a study going on in regards to Lightning Process. They also hold group sessions that I suspect are mandatory (300$) on nutrition, lifestyle, and all the stuff we already heard of. I believe they also sell their vitamins. And that is a big red flag right there for me.

Impish you said:

As to getting money out of MSP, what would the next steps be? Would it be worthwhile for a group of people who have CFS in BC to start to lay the groundwork to be able to get treatment sooner than later? I suspect we would need to have the science a bit more firmed up but you never know given the article written by the Canadian researchers in PNAS?/QUOTE]

That is really interesting question. I think it is time for people in BC to start advocating for real health care and for real specialists. It is despicable that the patient themselves have to look around for a doctor that will understand what is going on, and also adds cost to the system when we are shopping for doctors.

My suggestion: building an e-group for people with ME from BC. Write to MSP, write to the College of Physicians, write to your regional paper.
Public demo in Vancouver and Victoria-

Let's keep the conversation going.

Sounds good. I feel that we would be better served be keeping focused on a postitive outcome rather than wasting our limited time chasing after quacks (maybe step 2). So basically what we would want to accomplish is to ensure that CFS suffers in BC get positive and effective treatment, correct. Assuming it continues to look like MuLV's are the cause that is probably going to be anti-retroviral drugs, ampligen or something?

I have a meeting I have to run off to right now... more later.

 

[urbantravels]

Please do post about the Pacific Fatigue Lab experience, helen41, I'm very curious to know what that's like. Hope you are well stocked with comfy pillows and the trashy entertainment of your choice for the recovery period. :sofa:

 

[glenp]

Kati I am sorry that your doctor does not want to follow an experts recommendations
. What are the recommendations may I ask?

Quote ( sorry i cant get the quote to work)

It's been 22 months of illness so far, and no care, other than Dr Klimas, and my family dr doesn't want to follow her recommendations... what now?[/QUOTE]

glen

 

[Impish]

Thinking through it a bit further I do think that if they are actually requiring people to attend an information session (or sessions) and charging for it we should report them. I believe we do need to make sure we have the facts straight and accurate. Frankly, it sounds like a dodgy way to get around the public health care system. If that is what they are doing on investigation they could be required to give back the money to the patients who they took advantage of (assuming that they were charging people.

So do we know that they are in fact forcing people to attend an information session prior to being allowed to see them?