Article about new potential treatment by Victoria Bohne, in Norwegian

[Frenchguy]

Given the preliminary results of DCA, and given that DCA is a pro drug of oxalate and people seem to improve, I wonder if oxalate can have a better effect (DCA need to be metabolized to produce oxalate).

We don't know the amount of oxalates available after DCA absorption/metabolism.

An other point is that il the study of DCA, they used 400 mg per day. Maybe he has to be taken many times in day to inhibit longer and facilitate recovery.

Soluble oxalates can act directly and seem to present less side effects than DCA (neuropathy).

I discussed with the same patient and she showed me an other very severe people who had signifiant recovery. It give me hope given unlike others study with people with ME/CFS with Fukuda or oxford criteria, they treated severe/very severe people and they recover.

This very severe patient was one of the sickiest in Norway (tube feed, can't talk, can't return in this bed). There is no placebo effect on people like him.

The recovery time seem to be related to the severity of the disease before treatment. Concevable to me.

Sadly, we don't have news of OMF. I really hope OMF with "break the rules" and communicate about this finding.

Imagine you can make your own treatment at home, it's a dream.

 

[mariovitali]

Yes Mario, they have to follow the treatment every day, like diabete people.

If they stop, 3/4 after symptoms return but they return mild

Yes that confirms my experience as well. However there is one case of full recovery from a patient named ST which both Dr Phair and Professor Davis are aware of

 

[perrier]

My understanding is this is not something to be done 'at home.' Dangerous, it seems.There is also the issue of access to the formula. The folks in Norway are not doctors, so they can't risk giving this out. There are a host of issues, including diagnosis. At the same time, there are gravely ill patients who need help right now. Even if Dr Davis' team thinks this looks interesting, how will we all have access to this? If the inventors want to make a pill, this means engaging pharmaceutical, and this means a decade. As others, I'm very agitated, hearing that some folks recover so well, whilst we do not have access to the substances that did this in a safe medical setting.

 

[AndrewR]

No the folks in Norway are researchers. Highly educated with master degrees etc.

 

[MonkeyMan]

My understanding is this is not something to be done 'at home.' Dangerous, it seems.There is also the issue of access to the formula. The folks in Norway are not doctors, so they can't risk giving this out. There are a host of issues, including diagnosis. At the same time, there are gravely ill patients who need help right now. Even if Dr Davis' team thinks this looks interesting, how will we all have access to this? If the inventors want to make a pill, this means engaging pharmaceutical, and this means a decade. As others, I'm very agitated, hearing that some folks recover so well, whilst we do not have access to the substances that did this in a safe medical setting.

Perhaps the following scenario will play out:

1. Ron Davis decides this treatment is worth trying on certain patients, maybe including even Whitney
2. He obtains the formula from the Norwegian researchers, and finds the results to be impressive
3. Dr. Davis proposes to get the formula into the hands of ME/CFS specialists around the world, and in return OMF money is paid to the folks in Norway
4. ME/CFS patients who want to try this treatment must see these specialists

 

[pattismith]

One thing I forgot to mention in previous posts, my wife has tried oxaloacetate (Benagene) in the past with zero results. Obviously it's a sample of 1, but I suspect oxaloacetate is not what is important here.

Taking oxaloacetate or oxalate may not be the same.

oxaloacetate is also a potent inhibitor of mitochondrial complex II

 

[JES]

As others, I'm very agitated, hearing that some folks recover so well, whilst we do not have access to the substances that did this in a safe medical setting.

We do have access to the substances already. They mentioned in the patent document that the drinkable was simply a mix of fruits, greens, vegetables and nuts. The only issue is the proportion and the preparation, but if or when the exact recipe is told one day, I assume it would be nothing more difficult than mixing any vegetable smoothie. I see no reason why there would be a need to wait a decade for a pill to hit the market. Actually you can already buy oxaloacetate pills as a supplement, but I don't think they will work.

 

[MonkeyMan]

How can a mix of fruits, greens, vegetables and nuts in any way be "dangerous"?? That makes no sense to me.

 

[perrier]

How can a mix of fruits, greens, vegetables and nuts in any way be "dangerous"?? That makes no sense to me.

My humble feeling is that a) this is more complex than just eating fruits and veg, 2) when dealing with a severely ill patient you can't just bombard their system with endless smoothies, 3) many ME patients have severe GI problems and so I don't know how they will manage
There are many many questions. And furthermore, I know patients who have been drinking spinach through the years with no effect. We don't have enough information.

 

[WinterWren]

How can a mix of fruits, greens, vegetables and nuts in any way be "dangerous"?? That makes no sense to me.

There are many questions... Just to add my feelings on it, for what it's worth, I also believe that even though these are just fruit/veg drinks, if they are having a strong and immediate affect on someone with ME it makes sense that there is the potential for it to wreak havoc on your body. Even if you have milder ME.

If it's working the way that the inventors propose, then there are many ways that you could mess up your system by doing it wrong (like going on and off of the treatment, not getting the formula right, eating the wrong things with it, etc).

The inventors suggest that the most immediate affects are clearing up neurological symptoms and that they experienced strong neurological/vision problems when they messed with the formula. To give just one completely made up example of what could go wrong; you have one dose of the drink and it immediately clears out lactic acid and enhances the krebs cycle temporarily, in the brain... but the affect wears off and your brain is left with no sugar energy or lactate for energy, resulting in more sever neurological symptoms then before the treatment.

I'm not saying that that is what happens, or that I'm convinced that this is in fact really dangerous (it's hard to take people's word on it without more information), but it's definitely possible with our strange diseased bodies.

 

[enduin]

To be fair, unless I misunderstand the paper, the severe vision/neurological issues happened ONCE with ONE patient when they reduced the sugar content of the active drink. This is hardly proof of anything.

I have no doubt that playing around with oxalates is not something to be taken lightly, but the dosages don't seem to be higher than what people can consume normally if they eat certain foods in certain amounts. Maybe taking it everyday is what makes it more dangerous?

 

[babeng]

My understanding is that Bohne only has shared one article with Davis about the diagnostics, and asked if he can read through it before publication. Not any articles with regard to treatment. Hopefully some further dialogue can come from this. But I question Bohne's motives. If there was no monetary motives, she would have shared all of her findings with prominent researchers a long time ago.

 

[mariovitali]

I wonder what kind of diagnostics will be considered. I also wonder if a simple test such as Lactate Dehydrogenase has been tested on a large scale in ME/CFS patients

 

[enduin]

In light of the info from this thread, wouldn't it make sense to revisit the idea @Hip suggested in this thread:

https://forums.phoenixrising.me/ind...-study-to-measure-blood-lactate-levels.40152/

and collect some lactate data on our own? In the tread linked above it seems like some people tested high on lactate, and some normal, but a testing protocol as far as I understand, was not standardized.

 

[raghav]

According to ancient Ayurveda, this disorder is a manifestation of the aggravated vatha dosha. Basically most of us in this forum are vatha dosha by birth. It is not necessary that you have to be vatha dosha by birth to get aggravated vatha dosha. This happens mostly due to gut problems, either by way of antibiotics, or constipation or eating too much vatha dominant food items.
Ayurveda says those with aggravated vatha dosha should avoid raw vegetables. You are allowed to eat boiled or roasted vegetables. The idea is to not aggravate the symptoms in your intestines, especially large intestine.

So if we are going to try this cocktail the trickly part is the vegetables. Fruits and nuts at the most cause wind in your intestines as side effects.So we should try to find out the active ingredient in the vegetables. This can vary dramatically dependent on soil conditions in which it is grown and the season of the year when you pluck the vegetables. So we must try to find the active ingredients as a first step. Just thinking loud.

 

[wigglethemouse]

More twists and turns in this saga. Bohne Askoy have deleted their facebook posts.

From Victoria Bohne
https://www.facebook.com/victoria.bohne.9

Vi tar sommerferie og velger derfor å slette sidene til Askøy Bohne AS. Vi kommer sterkere tilbake med våre egne nettsider til høsten. God sommer til alle! Mvh Victoria og Øyvind

Facebook translation
We take summer vacation and choose therefore to delete the pages of askøy bohne as. We come back stronger with our own sites in the fall. Good summer to all! Mvh Victoria and øyvind

 

[raghav]

The plot is getting thicker !

 

[AndrewR]

Also noticed that. They are working on new sites. Also they are in search for a lab worker on further work, so they are indeed plugging along.

 

[Dan_USAAZ]

So, he had it right all this time. Who da thunk it?

 

[perrier]

The plot is getting thicker !

Well, Dr Davis has received a paper from Victoria Bohne. It would be interesting to know if it is holding water.