Article about new potential treatment by Victoria Bohne, in Norwegian

[Frenchguy]

So does that mean that not one ME/CFS Researcher has ever looked at Lactate Levels?

Yes a little. I haven't had this test but an anion gap measure.

High anion gap indicate lactic acidosis

 

[NL93]

- The treatment tested consists of a beverage made of "fruits, greens, vegetables and nuts in proportions necessarily to achieve desirable concentration of soluble oxalates" in doses of 250ml. There were 11 total patients enrolling at different times ranging from 8 to 150 weeks (2 months to a little over 3 years).


- The other supplements (1200 mg alpha-lipoic acid + 12 mg thiamine + 27 mg niacin + 2.5 mg riboflavin per day) were introduced later and not tested on all 11 patients. The supplements were found to have a beneficial effect but the efficacy of the oxalates treatment was assessed without the extra vitamins and supplements.

This can’t be that difficult to do at home? Or am I missing something?

 

[enduin]

It wouldn't be difficult if the successful recipe were made public.

I also wonder if any of the patients had any issues with kidney stones, due to the high oxalate intake...

 

[mariovitali]

This is very very interesting. I started looking at elevated lactate causes and apparently Liver Disease is one of them, also Thiamine deficiency.

I do have several concerns about using this type of treatment but it appears to be a huge step forward.

Also note that MFGE8 which was discussed here also lowers lactate levels!!

Source : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4939324/

In addition, the administration of fractalkine in CLP sepsis animals suppressed the increase in blood lactate levels, liver injury, and proinflammatory mediators, which is associated with decreased MFG-E8 levels [37]. Several in vivo studies have demonstrated that MFG-E8 ameliorates the symptoms of sepsis in animal models. The administration of both MFG-E8-containing exosome and recombinant MFG-E8 significantly increased the survival rate by 80% in a CLP sepsis rat model

Some excerpts for lactate:

Lactate is produced by most tissues in the human body, with the highest level of production found in muscle.3,4 Under normal conditions, lactate is rapidly cleared by the liver with a small amount of additional clearance by the kidneys.3,5 In aerobic conditions, pyruvate is produced via glycolysis and then enters the Krebs cycle, largely bypassing the production of lactate. Under anaerobic conditions, lactate is an end product of glycolysis and feeds into the Cori cycle as a substrate for gluconeogenesis​

The liver is the organ primarily responsible for lactate clearance, and in the presence of significant liver dysfunction lactate clearance may be impaired.95,96 Additionally, studies have shown that the acutely injured liver may itself act as a source of lactate.97–100 Clinicians should be cautioned against attributing a high lactate level to liver disease alone without adequately investigating and/or treating for other, more reversible causes of elevated lactate.101 Moreover, in shock states, accompanying liver failure likely accentuates lactic acid elevation secondary to poor clearance but is not the proximate cause of the initially increased production.

Thiamine serves as a co-factor for multiple cellular enzymes including pyruvate dehydrogenase and α-ketoglutarate dehydrogenase, components essential to the tricarboxylic acid cycle and aerobic carbohydrate metabolism (see Figure 1). In the absence of thiamine, anaerobic metabolism predominates and lactate production increases.79 The development of elevated lactate in both serum and cerebrospinal fluid secondary to thiamine deficiency has been well described.

Risk factors for thiamine deficiency include states of nutritional deficiency such as alcoholism, chronic liver disease, chronic wasting diseases, hyperemesis gravidarum, anorexia nervosa, and gastric bypass surgery.84–88 Elevated lactate resulting from thiamine deficiency is an often overlooked but easily treated condition that should be considered in cases of otherwise unexplained elevated lactate.89–92

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3975915/

 

[Helen]

This can’t be that difficult to do at home? Or am I missing something?

As the oxalic acid is highly toxic and the dosing should be related to actual lab test results, it might well be dangerous to experiment with the ingredients. The inventor ended up on ER when she tested the treatment herself, but couldn´t get any help as they didn´t know what to do.

It wouldn't be difficult if the successful recipe were made public.

I had a conversation with one of the persons who is on the treatment. I learnt that it is very complicated, should be taken throughout the day according to a time-table, some food should not be taken together with it, the beverage has to be freshly made, therefore only patients living close to the inventor could be on it so far.

The inventor has expressed that she is worried that people will start experimenting on their own as it could be very dangerous.

Edit: corrections.

 

[Frenchguy]

I spoke with an other girl who is treated. She send me photos of her when she was very sick and she had the "ME Crash face" (swollen).

She was wheelchair bound, and bedridden and now can drive etc. This seem incredible but I have to admit that they have found something that put the disease under control with treatment.

Ron Davis should be interested.
@Ben H @Janet Dafoe (Rose49)

 

[WinterWren]

I suppose that the oxalates are to produce oxaloacetate and the rest are to force the PDH to produce acetyl-CoA. These two more or less start the citric acid cycle.

I've been thinking about buying a supplement that says it contains oxaloacetate but it's pretty expensive. I'll be honest and be the first to admit that I've been making kidney stone smoothies (anyone else?)... I know it could be dangerous but I'm trying to be careful and smart about it. I add sugar like the inventors talk about, I aim for less oxalates per day than they talk about, I divide it into 4 small servings, it's really not that much spinach (I used to eat spinach almost daily a long time ago... not quite as much). If things start to feel weird at any point I'll stop. So far I feel good. No idea if it's anything like the recipe they use...

 

[perrier]

I seem to have picked up this story rather late; who is the inventor and where is she doing these 'treatments?" And what else do we know about her and her experiments?Thanks

 

[wigglethemouse]

who is the inventor and where is she doing these 'treatments?" And what else do we know about her and her experiments?

See page 4 of this thread for links to patent details and their Facebook page

 

[perrier]

See page 4 of this thread for links to patent details and their Facebook page

Thanks WiggleThe Mouse for taking the time to direct me to the info.

I looked at the facebook page, and there isn't all that much there except that they are waiting to publish.

I'm really becoming a sceptical because they must know how utterly severe and disabling this illness is, and not to move a bit swifter seems rather inconsiderate.

I have to wonder if they aren't eager to make money first and foremost.

Those examples sited here of folks who have improved are interesting. How did these folks get into their treatment?

 

[perrier]

I spoke with an other girl who is treated. She send me photos of her when she was very sick and she had the "ME Crash face" (swollen).

She was wheelchair bound, and bedridden and now can drive etc. This seem incredible but I have to admit that they have found something that put the disease under control with treatment.

Ron Davis should be interested.
@Ben H @Janet Dafoe (Rose49)

Bonjour,
If you spoke with this person, how did she get into trying this regime? Did she go to Norway?
And surely, if this works, wouldn't folks be knocking the door down. This illness is very extreme, it is anti-life. Why is this all so obscure. I'm getting a bit skeptical....

 

[perrier]

As the oxalic acid is highly toxic and the dosing should be related to actual lab test results, it might well be dangerous to experiment with the ingredients. The inventor ended up on ER when she tested the treatment herself, but couldn´t get any help as they didn´t know what to do.


I had a conversation with one of the persons who is on the treatment. I learnt that it is very complicated, should be taken throughout the day according to a time-table, some food should not be taken together with it, the beverage has to be freshly made, therefore only patients living close to the inventor could be on it so far.

The inventor has expressed that she is worried that people will start experimenting on their own as it could be very dangerous.

Edit: corrections.

Thanks for the info Helen. The point the inventor makes is well taken. However, this illness has the highest suicide rate because it is so unbearable. Surely, they know this. Why aren't they contacting doctors, or are they?

 

[WinterWren]

I really appreciate what the inventors have discovered and what they’re trying to do but I can’t help but be a bit skeptical. Mostly about how tricky and exact it really is. It only makes sense that they would try to kept control of the process by spreading that information... I could be wrong but that’s my feeling about it right now. Two years is a long time. The ingredients are not drugs so the same amount of testing shouldn’t be required even if it is dangerous.
She also outlines a lot in her patent including the problem they ran into when they tried to make a low sugar version. That’s the only big incident that happened, low sugar caused loss of vision for 40 minutes but it came back. They have the nutrition data so you can see how much sugar, protein, fat it contains... Plus, the patent states that all patients receive the same drink, same amount, taken every 4.5 hrs during the day. Am I wrong? Sorry I’m just upset about this because of all that has happened in the last couple of years, to so many people not just me.

 

[aquariusgirl]

Hard to get a handle on this from what’s been written here....but ALA& B1 fit with the block at pyruvate dehydrogenase complex.

High dose IV ALA makes me dump oxolates big time. But it pulls down my B1 so I take lots of that.

I’m trying to reduce oxalates so ...,I’m a little confused by some of the other stuff.

But an educated guess says she’s homing in on PDC & oxalates?

 

[enduin]

I'm actually a bit confused by this claim that the treatment is super dangerous and the patients cannot produce it themselves.

According to this paper https://www.sciencedirect.com/science/article/pii/S0085253815469157

"The dietary oxalate intakes that we estimated for five individuals on three different days suggest that intake will be highly variable in individuals consuming typical North American diets, as their intakes ranged from 44 to 351 mg/day. In individuals consuming a normal portion of an oxalate-rich food, such as spinach, intake may exceed 1000 mg/day."

So if the active beverage used in the treatment contains 0.61g/Lt (or 610mg/Lt) of soluble oxalates, that is 152mg of oxalates for each 250ml serving (250ml = 1/4 of a liter). That means that taking 2 doses would still yield less than the intake of normal people eating a normal diet (assuming the rest of the food is not high oxalate obviously). Even taking 3 doses of the beverage would still be less than normal individuals consuming a normal portion of oxalate rich food according to the study.

So, unless I'm missing something, I have a hard time understanding why the oxalate levels in the beverage would be so dangerous if normal people unknowingly consume just as much if not more, and clearly they are not all ending up at the ER. Consuming this amount of oxalate daily I'm sure can have some harmful effect, but taking it as needed (since it seems to work immediately) I don't see why it would be a problem.

Additionally, considering the the beverage is made of fruits and vegetables, I'm not sure why patients with a good scale and a masticator juicers would not be able to produce it themselves. It's not like producing a recombinant DNA biologic drug.

I will say this: if the inventor of this treatment is actually concerned about people trying it themselves because she knows of some risks, she should give us more details and explain why and what the risks are. A lot of CFSers are extremely intelligent people, and intelligent people usually listen to logical explanations, not "don't do it because I told you so".

 

[MonkeyMan]

At first glance, this is stunning. But I've become so jaded after 33 years of false hope and useless concoctions that I cannot anymore get my hopes up. How am I supposed to believe that a cure can exist?

 

[AndrewR]

After reading some of the facebook threads from the inventors, the OMF seems to show little interest in this. Can someone confirm or debunk this? Although the study done seems to be in a very small scale, wich is understandable since it is done mostly from their own pockets. They really should get some help in financing aswell.

Although it might not be a "cure" ... It could be a treatment that could help MANY until a cure is in place.

@Ben H

 

[NL93]

I'm actually a bit confused by this claim that the treatment is super dangerous and the patients cannot produce it themselves.

According to this paper https://www.sciencedirect.com/science/article/pii/S0085253815469157

"The dietary oxalate intakes that we estimated for five individuals on three different days suggest that intake will be highly variable in individuals consuming typical North American diets, as their intakes ranged from 44 to 351 mg/day. In individuals consuming a normal portion of an oxalate-rich food, such as spinach, intake may exceed 1000 mg/day."

So if the active beverage used in the treatment contains 0.61g/Lt (or 610mg/Lt) of soluble oxalates, that is 152mg of oxalates for each 250ml serving (250ml = 1/4 of a liter). That means that taking 2 doses would still yield less than the intake of normal people eating a normal diet (assuming the rest of the food is not high oxalate obviously). Even taking 3 doses of the beverage would still be less than normal individuals consuming a normal portion of oxalate rich food according to the study.

So, unless I'm missing something, I have a hard time understanding why the oxalate levels in the beverage would be so dangerous if normal people unknowingly consume just as much if not more, and clearly they are not all ending up at the ER. Consuming this amount of oxalate daily I'm sure can have some harmful effect, but taking it as needed (since it seems to work immediately) I don't see why it would be a problem.

Additionally, considering the the beverage is made of fruits and vegetables, I'm not sure why patients with a good scale and a masticator juicers would not be able to produce it themselves. It's not like producing a recombinant DNA biologic drug.

I will say this: if the inventor of this treatment is actually concerned about people trying it themselves because she knows of some risks, she should give us more details and explain why and what the risks are. A lot of CFSers are extremely intelligent people, and intelligent people usually listen to logical explanations, not "don't do it because I told you so".

Maybe it’s the difference between soluble and insoluble oxalates that’s importanot here?

 

[enduin]

I thought about soluble vs insoluble and yet the oxalates in raw spinach are mostly soluble, with a small amount bound to calcium as insoluble calcium oxalate. So with 100g of raw spinach juice you are still getting 6-700mg of soluble oxalates, which would be 4 servings of the beverage.

 

[wigglethemouse]

After reading some of the facebook threads from the inventors, the OMF seems to show little interest in this. Can someone confirm or debunk this?

I don't know where you read that?

This is what I saw on their Facebook page on the post dated June 14 https://www.facebook.com/bohneexperemlaboflivingcellenergy/

Nytt fra i dag. For 2 dager siden har jeg spurt professor Ronald W. Davis om å lese manuskriptet til den første artikkelen som handler om diagnostikk. I går fikk jeg positiv svar. Jeg viste ikke hvem han var, da jeg bare søkte blant personer som har vært med på å skrive Februar 2015 rapport om SEID.

Dette er andre gang i mitt liv jeg møter veldig rause mennesker i høye positioner og anerkjente.

Using the Facebook translate tool:

New from today. 2 days ago, I've asked professor Ronald w. Davis to read the manuscript of the first article that is about diagnostics. Yesterday I got positive answers. I didn't know who he was, when I was just searching among people who have been to write February 2015 report on seid.

This is the second time in my life I meet very generous people in high positioner and recognized.

On their page they also say a prominent Norwegian researcher has agreed to read their draft paper. The next step is for them to publish the paper which will bring much more awareness and possible support so that the work can continue in order to understand what is happening and why and to develop a pill form for wider use.