Gordon Medical + WPI trial

[Daffodil]

this may have been posted before..but i wasnt aware that gordon medical and wpi were involved in a novel pathogen discovery trial. this is the sort of thing i love to see:

http://www.gordonmedical.com/unrave...-pathophysiology-of-chronic-fatigue-syndrome/

 

[Aileen]

Thanks for posting Daffodil. I looked around the website a bit and also found this equally interesting item connected with Gordon Medical (which I've never heard of before). Yet another "new" parasite implicated in our illness, a type of roundworm discovered 15 years ago according to the article. According to the article, in a double-blinded study it was found in over 60% of CFS patients. Especially relevant for those with MCS.
New Research into Multiple Chemical Sensitivities: The Possible Role of Varestrongylus Klapowii in Cause and Treatment

 

[alex3619]

I have known of this roundworm for a very long time. Its serious research. It originated in south east Asia, and is thought to have travelled to the US and other destinations due to the Vietnam war, though it can possibly travel via contaminated produce. They were treatment strategies being tested, but I am not up to date on the outcomes. At one point it was realized that the lifecycle of the parasite made it incredibly difficult to treat - at only one stage in its lifecycle is it vulnerable.

How do you spot infection? Its very difficult. It does however, if I recall correctly, leave a short track of spots in a straight line under the skin. This parasite is very tiny and does not produce many copies of itself. We are talking very few parasites per person, compared to other parasites. It is possible however to detect the roundworm chemical products (DNA? dont recall) in saliva.

 

[Daffodil]

gordon believes cfs could be herv and prescribes arv's i think

 

[snowathlete]

Interesting about the nematode.
How does the immune system normally respond to some invaders? Wouldn't it just kill them off?

I suppose the trick would be to find a way to kill it and see if people get better, or infect a healthy person with it and see if they get I'll with ME. Guess you can't do the later though...

Do nematodes respond to CBT? What about GET?

 

[alex3619]

Hi snowathlete, I could say more about this but I don't know if its public and I wish to keep the details confidential - unless Larry says I can talk about it or a paper discussing the details is published. Some of the immune mechanisms are known or suspected. I had wondered where this research got to, now I know its ongoing, which I am happy about. Bye, Alex

 

[Daffodil]

i hate it when they talk about anything other than a retrovirus.

 

[Whit]

Neil Nathan at Gordon Medical tested me for this parasite, using the nasal wash method and the results were negative. Doesn't mean much, but I just thought I'd share. I don't think it's THE answer but I don't have MCS as far as I know, so maybe there's a subset of patients who this will help.

When I had the test done my impression was that there was a way to get rid of them, but I'm not sure. I was just like "parasite? test? ok"

 

[Marg]

Interesting about the nematode.
How does the immune system normally respond to some invaders? Wouldn't it just kill them off?

I suppose the trick would be to find a way to kill it and see if people get better, or infect a healthy person with it and see if they get I'll with ME. Guess you can't do the later though...

Do nematodes respond to CBT? What about GET?

I have an unidentified parasite in my small intestine and one that is identified. I have been tested before and nothing was found by two different doctors and labs. I had a test a few weeks ago that showed unidentified bacteria and then I had the test to identify it, it came back parasites. The parasites showed on the Ion Panel with 40 Amino suggested by Rich. I am getting a B complex shot once a week to bypass the parasite since the B's were low and I was taking sublingual. I am using the herbal Panadex. Drs. Klimas and Rey thought the drugs too toxic so this first. Today is just the 5th day. I am to go for 20 days and today I learned wait 5 days and do it again. No, I am not having fun yet! LOL

The last immune testing showed natural killer cells up from 5% to high normal but the cytokines going for something, hmmm parasites?

I saw a Naturopath today and had a colonic, she said nothing yet. I am to go back in two weeks. I had been having periods of being very hot. She said that parasites cause trouble with hormones.

I am feel okay in general though. I think the herpes viruses must be back in their places at long last.

I don't know how I would find out how what the parasite is. I will be tested again after the Panadex. Hopefully it will be gone.

Rich mentioned that he has seen unidentified parasites on other ME/CFS people's tests.. Any comment Rich about us having unidentified parasites? Is there a way to find out what it is, or does it not matter? I guess getting rid of it is the main thing. I will keep you posted.

 

[Hope123]

I've heard about this in years past on another forum and supposedly, some people were trying out a common anti-parasitic drug that they got from veternarians. However, I don't recall anyone re-posting that they got better or improved significantly. Now, they're saying it's for MCS but prior it was claimed for CFS cases in general from what I recall.

I remain skeptical.

 

[Marg]

I've heard about this in years past on another forum and supposedly, some people were trying out a common anti-parasitic drug that they got from veternarians. However, I don't recall anyone re-posting that they got better or improved significantly. Now, they're saying it's for MCS but prior it was claimed for CFS cases in general from what I recall.

I remain skeptical.

Well, it is something that is not suppose to be there and getting my vitamins. I was taking sublingual and nada. I never thought of such a thing. I always tested fine in the past but tests are better now. I have read they are hard to find, one CFS doc told me vets know how to look for them. I don't know if he used a vet or not. I imagine anything can get a foot hold when the immune system is low.

 

[biophile]

Hehe snowathlete!

Funding for a new CBT/GET study has just been announced, known as WORM (Woolly Ostentatious Retro Management). It is being designed and funded by BALTA (Biopsychosocialists Absolutely Love Trial Acronyms). Primary outcomes will be self-report of parasites. Actual medical tests to detect parasites were dropped because they would have been "too burdensome to patients". Short of death and being bedridden for months at time, it will be considered safe. If things aren't going well, post-hoc protocol changes may be introduced halfway through the trial. Anyone that criticizes the methodology will be branded an extremal radical whom perpetuates the stigma of mental illness.

 

[alex3619]

Hi biophile, didn't they publish one just like that in March last year? Bye, Alex

 

[Daffodil]

does anyone know how much it costs to consult with dr. gordon?

 

[Whit]

I've spent a lot of money there.

 

[Starfive]

does anyone know how much it costs to consult with dr. gordon?

Their fees are different for each doctor, nurse practitioner. Last I heard a two hour initial visit with Dr. Gordon is almost one thousand dollars. Plus tests and supplements $$$
They do not take any insurance yet provide a summary bill for one to submit to insurance if applicable.
Seems that the focus has been on Lyme.

 

[Daffodil]

thanks star.

 

[MishMash]

Their fees are different for each doctor, nurse practitioner. Last I heard a two hour initial visit with Dr. Gordon is almost one thousand dollars. Plus tests and supplements $$$
They do not take any insurance yet provide a summary bill for one to submit to insurance if applicable.
Seems that the focus has been on Lyme.

When a CFS doctor starts charging "cash only" at astronomical rates, and prescribes "supplements" it's usually a sign of something. The victims of CFS become victimized once again. It's sad, in my opinion.

 

[dannybex]

Hi snowathlete, I could say more about this but I don't know if its public and I wish to keep the details confidential - unless Larry says I can talk about it or a paper discussing the details is published. Some of the immune mechanisms are known or suspected. I had wondered where this research got to, now I know its ongoing, which I am happy about. Bye, Alex

Almost two years later, do you have any more details @alex3619 ?

 

[dannybex]

When a CFS doctor starts charging "cash only" at astronomical rates, and prescribes "supplements" it's usually a sign of something. The victims of CFS become victimized once again. It's sad, in my opinion.

You mean, like Cheney?