Budwig Protocol - any benefit for ME/CFS?

[Mary]

THIS POST AND SEVERAL SUCCEEDING ONES HAVE BEEN MOVED FROM THE THREAD Low energy, low mood? Phosphorous might be key AS THEY WERE OFF-TOPIC

I did try di sodium phosphate a week or 2 ago for with a meal, afterwards I noticed my heart pounding was worse than usual although I write in my log that I felt a bit better after it ended.

I've only taken monosodium phosphate - I wonder if the disodium phosphate would affect me differently. I would try a smaller dose and see what happens, or try monosodium phosphate. Or get some foods high in phosphate and see how you do. Three glasses of kefir helped me. I don't take that every day - it was a one off, to see if phosphate would help my severe fatigue, and it did.

2 tablespoons of hemp seed seems to be enough? https://www.nutritionvalue.org/Seeds,_hulled,_hemp_seed_nutritional_value.html

3 tablespoons is 495mg, so my rough math says 2 might work!

These hemp seeds look like a good source of phosphate too!

What is interesting is the recent links with O2 in the blood just not getting used.

I wonder if the oxygen is having trouble getting into the cells. Not to derail my own thread here, but I've been reading about the Budwig Protocol for cancer (cottage cheese and flaxseed oil blended with a blender), supposed to help cell membranes and increase oxygenation of cells. It sounds bizarre but when I read the logic behind it, it was quite interesting. I read about it in this book: Outsmart Your Cancer - it as extremely interesting and I plan to do an experiment with it.

 

[sb4]

I wonder if the oxygen is having trouble getting into the cells. Not to derail my own thread here, but I've been reading about the Budwig Protocol for cancer (cottage cheese and flaxseed oil blended with a blender), supposed to help cell membranes and increase oxygenation of cells. It sounds bizarre but when I read the logic behind it, it was quite interesting. I read about it in this book: Outsmart Your Cancer - it as extremely interesting and I plan to do an experiment with it.

What is the gist of the idea? I notice flaxseed is high in PUFAs which would increase membrane fluidity but I thought you would want to do the opposite with cancer?

 

[PatJ]

I used to experience this where I would need to take deep breathes but still I felt like I was lacking air, it is a different sensation to hyperventilation.

That might be Air Hunger/Dyspnea where you feel like you can't get a satisfying breath of air, no matter how deeply you breath.

Budwig Protocol for cancer ... it as extremely interesting and I plan to do an experiment with it.

Adding to your self-threadjack with some hopefully useful information...

I've tried the Budwig Diet several times. The first two times eventually left me feeling utterly exhausted. I gave it a third try after learning that I need even more magnesium while on the diet. I think that the extra calcium in the Bugwig Diet was throwing off my calcium/magnesium balance which led to the exhaustion. Increasing my magnesium supplement made all the difference.

For benefits, the first time I noticed somewhat reduced anhedonia, improved mood, better color vision, and an increased desire to do things. The third time I didn't notice those effects. I also noticed that each time I started the diet the Budwig FOCC mixture tasted _really_ good initially. It was like my body loved it and craved more. Within a few weeks that effect wore off and I also started having more oily skin. Maybe I was oversaturated with flax oil.

There's a lot of misinformation about the diet on the web. Here are couple of very good Budwig Diet sites:
* www.healingcancernaturally.com/index-budwig.html - contains detailed information based on Dr. Budwig's books, very extensive and well researched FAQ
* www.budwig-diet.co.uk

A note for trying the diet: I've tried just yogurt and it didn't blend well enough. Store bought cottage cheese is usually loaded with additives. I tried home-made quick cottage cheese (using vinegar) but it didn't blend well with the flax oil.

Well strained greek yogurt, or quark (which is what Dr. Budwig used) works best. DIY quark is easy. I can give you a simple recipe if you'd like to try it.

 

[Mary]

What is the gist of the idea? I notice flaxseed is high in PUFAs which would increase membrane fluidity but I thought you would want to do the opposite with cancer?

According to the book I linked above (Outsmart your Cancer), Johanna Budwig found that persons with cancer were low in omega 3's and 6's. These are necessary for health cell membranes, so instead the cell membranes were composed of unhealthy transfats and other unhealthy fats, which did not attract oxygen to the cells (I'm explaining this pretty crudely), it affected their electrical charge, and cancer cells are anaerobic. Which struck me because I've read that people with ME/CFS tend to have anaerobic metabolism.

So the cottage cheese/flaxseed mixture is supposed to replace the unhealthy fats, get the cell membranes in better working order and thus allow oxygen into the cells. It's more complex. If I can figure out how to transfer pictures from my camera to my computer, I can copy the pages which explain this.

Here's a link from something else which gives a rough explanation of what goes on with the Budwig Protocol: http://www.vitaliteitsite.nl/system/domains/5/attachments/1303/Budwig.pdf

 

[Mary]

The first two times eventually left me feeling utterly exhausted. I gave it a third try after learning that I need even more magnesium while on the diet. I think that the extra calcium in the Bugwig Diet was throwing off my calcium/magnesium balance which led to the exhaustion. Increasing my magnesium supplement made all the difference.

Thank you - this is very useful information! I'll keep an eye out for symptoms like this. It's similar to what happened when I started taking thiamine, although the switch from feeling very good to exhausted happened very quickly with the thiamine, in a matter of 2 days I think.

Thanks for the links too! Yes, you if don't mind, please send me a PM with the DIY quark recipe

Also - do you mind stating why you were doing the protocol? I want to see if it increases my stamina, if it helps oxygenate my tissues.

 

[sb4]

@Mary That is interesting although I have read the opposite in regards to cancer. In that Linoleic Acid is pro cancerous and saturated fats like stearic acid are anti cancerous. I think one of the reasons is that to proliferate cancer cells need to expand and then divide. Saturated fats cause a membrane to be stiff, a cell cannot expand and divide with a stiff membrane so cancer cells upregulate an enzyme that desaturates stearic acid and possibly others to increase fluidity.

Then there is also a problem with O6 and increased insulin signaling with insulin being pro anabolic.

Perhaps what I have said is all wrong though and maybe it depends on context.

 

[PatJ]

Also - do you mind stating why you were doing the protocol? I want to see if it increases my stamina, if it helps oxygenate my tissues.

I had read that it could be helpful for many health conditions, not just cancer. After reading many anecdotes and finding detailed information about the reasons and methods involved, I decided to give it a try just to see if it could help me in some way.

 

[Mary]

I think one of the reasons is that to proliferate cancer cells need to expand and then divide. Saturated fats cause a membrane to be stiff, a cell cannot expand and divide with a stiff membrane so cancer cells upregulate an enzyme that desaturates stearic acid and possibly others to increase fluidity.

Hi SB4 - with my old phone, I could take a picture and then upload it from my phone to my computer. When I try to do it with my new phone, I can't find the drive on my phone to do this! And am trying to avoid the google cloud as I think google wants to know everything they can about us. What I'm trying to say is I wish I could copy the relevant portions from the book I referenced and post them here.

So - what the book says (roughly) about cell membranes is that yes, membranes do need to be soft or pliable in order for the cells to divide properly. If the membrane is faulty and is stiff, cells are going to TRY to divide, they will generate another set of chromosomes, but because the membrane is not soft, they won't be able to divide properly and you will end up with cells with too many chromosomes, which have been found in cancer cells.

And again the book talks about oxygen and the lack thereof in cancer cells, and the need for a healthy cell membrane for cells to divide properly and to be oxygenated and to have proper electrical charges to generate energy. So it basically reached the opposite conclusion from you - that a stiff membrane contributes to cancer, prevents proper cell division and inhibits oxygen from entering the cell.

Then there is also a problem with O6 and increased insulin signaling with insulin being pro anabolic.

I don't know anything about this. i think you've read more about this than me!

in any event, I'm trying an experiment to see if the cottage cheese/flaxseed oil mixture helps with my stamina. Actually reading what I read was a bit scary - how cancer cells are anaerobic (which I've read before) and then relating to our anerobic metabolism - it seems that cancer should be much more prevalent in persons with ME/CFS because of this. Anyways, I don't think a couple of months on the protocol could do much harm, no worse than regular old ME/CFS!

 

[Mary]

Hi @sb4 (again - did not tag you properly above!) - here are two links showing low omega 3 status in persons with ME/CFS and a little bit about possible effects thereof:

Gray, et al posit a similar hypothesis whereby the core features of ME/CFS – including reduced natural killer cell (NKC) function and exercise intolerance – may be due to abnormal production of eicosanoids, signaling molecules involved in inflammation that are produced from fatty acids found in cell membranes.[1]

https://me-pedia.org/wiki/Omega_3_fatty_acid_hypothesis#cite_note-1
https://me-pedia.org/wiki/Omega_3_fatty_acid_hypothesis

https://www.ncbi.nlm.nih.gov/pubmed/30471769

I'm going to move the posts about the Budwig Protocol to a new thread.

 

[sb4]

@Mary Perhaps he's right, I don't know. I would be interested in hearing your results and it is an interesting idea that stiff membranes are a cause. I am cautious of O6 for other reasons but like you say, it could that CFS is deficient in O3/6 for some reason.

Yeah I have always wondered about cancer rates and CFS. It seems the CFS metabolism is very similar to warburg metabolism and what I have read indicates that metabolic dysfunction causes cancer, not random genetic mutations.

I recall reading on here that CFS die on average 10yrs earlier and I think cancer and heart disease was some of the causes if I remember right.

Even so, high lactic acid output, with mitochondria that run on fat is the same as cancer metabolism as far as I am aware. It always makes me a little worried.

 

[Rufous McKinney]

I wonder if the oxygen is having trouble getting into the cells.

It must be, as i experience considerable air hungar while measuring 98 or 99 oxygen saturation of my blood at my fingertip. Oxygen is in there apparently.

Our muscles aren't retrieving it properly....or something. Systrom.

 

[Violeta]

It must be, as i experience considerable air hungar while measuring 98 or 99 oxygen saturation of my blood at my fingertip. Oxygen is in there apparently.

Our muscles aren't retrieving it properly....or something. Systrom.

I have seen this called pseudohypoxia and thiamine is supposed to be good for it.

 

[Violeta]

@Mary Perhaps he's right, I don't know. I would be interested in hearing your results and it is an interesting idea that stiff membranes are a cause. I am cautious of O6 for other reasons but like you say, it could that CFS is deficient in O3/6 for some reason.

Yeah I have always wondered about cancer rates and CFS. It seems the CFS metabolism is very similar to warburg metabolism and what I have read indicates that metabolic dysfunction causes cancer, not random genetic mutations.

I recall reading on here that CFS die on average 10yrs earlier and I think cancer and heart disease was some of the causes if I remember right.

Even so, high lactic acid output, with mitochondria that run on fat is the same as cancer metabolism as far as I am aware. It always makes me a little worried.

With respect to the lactic acid output, "The mechanism of lactic acidosis in vitamin B1 deficiency is explained by the fact that thiamine is an essential co-factor for the enzyme pyruvate dehydrogenase that allows oxidation of pyruvate to acetyl CoA. ... Lactic acidosis due to thiamine deficiency is rare because thiamine deficiency is rare."

I think the statement about thiamine deficiency being rare is probably false.

I have just started to go through the posts about thiamine, if this has already been mentioned please forgive me.

 

[Mary]

I think the statement about thiamine deficiency being rare is probably false.

@Violeta - I agree! I speculate that many with ME/CFS may have a thiamine deficiency. I was amazed at how it boosted my energy so quickly, within a day, and then further amazed when a day later I was hit with severe fatigue due to hypophosphatemia, which took some sleuthing to figure out. I urge anyone who is thinking of experimenting with thiamine to go slowly because of possible hypophosphatemia - a refeeding syndrome effect, which is potentially dangerous. It's like with folate and B12 which can cause potassium levels to tank quickly - you need to be on top of it and ready to deal with it if it happens.

From what I've read, the excess production of lactic acid in ME/CFS is due to our abnormal anaerobic energy metabolism which produces excess lactic acid. Whether this has some relationship to thiamine deficiency I don't know. Taking thiamine has increased my energy, but it doesn't seem to have changed my metabolism - I still crash like clockwork after doing more than 4 hours of light activity a day.

 

[sb4]

I got a boost from thiamine a few years back. I stopped taking it and the benefits seemed to maintain. Plus I did a transketolase test which showed good thiamine levels.

Recently I have started taking it again in the form of cocarboxylase sublingual and I am noticing again improvements in carb tolerance. I intend to try massive doses soon and see what happens.

 

[Violeta]

Any new ideas about working with the thiamine? I am not improving at all, and there doesn't seem to be anything I can eat! I am trying to make sure to take magnesium and potassium consistently. I have not bought a phosphorus supplement, I guess I should look into that more, because I haven't been as consistent with the kefir. It's just so hard! I am bummed today.

@Mary, I have read that thiamine has something to do with lactic acid build up. I'll try to get a quote or link for that.

@sb4 Have you tried the high dose thiamine yet? So you found the sublingual cocarboxylase more effective?

 

[Tammy]

I heard of Budwig years ago and tried the cottage cheese/oil mix. Didn't really notice a difference one way or the other.

 

[sb4]

@Violeta I am waiting for some more cocarboxylase to arrive but then I shall try around 1g per day for a while. It should be noted I have tried higher dose in other thiamine forms before without much noticable diference. I read a post about somebody experiencing significant diferances between 5 pills twice daily (250mg) and 10 pills 4 x daily, so this is what I shall try.

Since reintroducing thiamine a week or so ago my tolerance to carbs has increased and I feel a little calmer. I highly doubt I have thiamine deficiency so I think something else is at play.

 

[Violeta]

@sb4 What do carbs do to you? Since you say the thiamine is helping your tolerance and you feel calmer, do they just make you feel wired?

 

[sb4]

@sb4 What do carbs do to you? Since you say the thiamine is helping your tolerance and you feel calmer, do they just make you feel wired?

My worst symptom is heart pounding. About 15 mins after eating carbs it increases, peaking at around an hour and tapouring off over the following few hours. Other POTS symptoms increase in this time.

I get this whatever I eat or drink however it is significantly worse with carbs. Thiamine takes the edge off it noticably however it is still there hence I will try mega dosing.