Reporting improvement.

Irat

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Yes, plants can photosynthesize! They're sort of magical that way. We can't-I think if that as one of the fundamental differences between animals and plants.

Plants have both mitochondria and chloroplasts. The chloroplasts turn the sun's light energy into glucose and then the mitochondria turn that glucose into ATP. The mitos can't turn sunlight into ATP directly in either plants or animals. That's just not their job.

Our energy ultimately comes from the sun, but through the food chain-eating plants and animals, not from the sun directly.


I also think Mother Nature is just wonderful. But I also think that if we are really to appreciate her, we have to understand what she's really doing. Sunlight, energy, plants, and animals all form a lovely web of interconnection. But it doesn't work like Kruse says it does.
What about this one

The apparent photosensitivity of the mitochondrial electron transport apparatus is a relatively new addition to biological science

The mitochondrial electron transport chain no doubt shares an evolutionary relationship with the photosynthetic electron transport chain.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2996814/

Ah well ,it's too complicated ,for my understanding sunlight contains infrared light,and infrared light causes mitochondria to produce more ATP
 
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hapl808

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If something works for you, that's great. Since we're not actually researchers, it doesn't necessarily matter why it works, just that it does. Someone else can figure out the mechanism. But even things that I try, I often am skeptical toward the confident explanations of why they work - for CFS, lyme, fibromyalgia, or any poorly understood condition. It's all guesswork, but at the end of the day I just want to improve and don't really care how I get there.
 

SWAlexander

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If something works for you, that's great. Since we're not actually researchers, it doesn't necessarily matter why it works, just that it does. Someone else can figure out the mechanism. But even things that I try, I often am skeptical toward the confident explanations of why they work - for CFS, lyme, fibromyalgia, or any poorly understood condition. It's all guesswork, but at the end of the day I just want to improve and don't really care how I get there.
This is exactly what I mean. We are not scientists - we are the ones in pain.
I had this condition 6 times before and with it 6 different and very strange diagnoses and too many wrong meds. Now I know what it is, - one of the 3 different Mastocytosis with Urticarial pigmentosa, in addition to many other CFS symptoms. All I would need is a test for tryptase level to confirm.

On the other hand, what is science? How did science start? It was no more than being curious, trying this and that. "The Knowledge Machine", by Strevens
 

Wishful

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oh you could challenge Kruse on his forum.would be interested what he says.
I just googled him and it shows that plenty of people have already pointed out the outright false science he bases his theories on. His nonsense has already been covered by this earlier thread: https://forums.phoenixrising.me/threads/dr-jack-kruses-explanation-of-what-cfs-is.52042/

Have some people improved by following some of his suggestions? Probably, and probably some just via placebo effect. Does that validate his theories that are based on pure fiction? Nope. Sunlight, healthy eating, and other such suggestions can help, but not because 'mitochondria are fueled by electrons' or any other erroneous claims.
 
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SWAlexander

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I just googled him and it shows that plenty of people have already pointed out the outright false science he bases his theories on. His nonsense has already been covered by this earlier thread: https://forums.phoenixrising.me/threads/dr-jack-kruses-explanation-of-what-cfs-is.52042/

Have some people improved by following some of his suggestions? Probably, and probably some just via placebo effect. Does that validate his theories that are based on pure fiction? Nope. Sunlight, healthy eating, and other such suggestions can help, but not because 'mitochondria are fueled by electrons' or any other erroneous claims.
May I suggest reading "Treatment: Mast cell mediated therapies" in this link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3863935/
 
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Wishful

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May I suggest reading "Treatment: Mast cell mediated therapies" in this link:
Okay, what does that have to do with Kruse's false science? UV light can be a useful treatment, but not because it 'produces electrons to fuel mitochondria' or whatever Kruse might claim. Scientific theories are proven by making predictions based on the theory and testing to see if they uphold it. If there are multiple explanations for a result, such as sunlight improving health in certain circumstances, then you need to refine the tests to determine which theory best explains it. Kruse's theory of sunlight or free electrons fueling ATP production would be fairly easy to test and prove false.
 

wabi-sabi

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What about this one
Well, lets just say the articles they review don't support their conclusions.

In general, a review article is a higher level of evidence than individual experiments because review articles add up lots of individual papers to make a bigger picture. If authors claim the articles they review show something they really don't...well then the review is no good.

OK, I didn't read all the references, but I get the feeling they are extrapolating beyond the evidence and where light seems to help out, they don't really know why.
 

Judee

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Could it also be the steroid in the cream? Maybe the sauna caused you to absorb it better. Some people have gotten temporary relief from steroids. ???
 

SWAlexander

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Could it also be the steroid in the cream? Maybe the sauna caused you to absorb it better. Some people have gotten temporary relief from steroids. ???
Yes, Calcipotriderm is a vit D steroid. But I have used it for years without seeing too much effect. Regular steroids like Globedasol don't work as well and sometimes not at all. It is a combination of different things to keep MCAS with urticaria pigmentosa under control. After all, MCAS has not just one symptom.
 

SWAlexander

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MCAS. This is how I looked 3 month ago.
Leg l.jpg


After 5 times solarium (2 times a week for 8 min), 1 x a week Calcipotriderm (vit. D steroid ointment) almost all hives, swelling, low blood pressure, difficulty breathing and severe diarrhea gone. Collagen is beginning to restore. Energy s better, sleep is better but not perfect yet.
I'm not saying that is a cure, but it has helped me without nasty side effects.
This is my evidence of progress.
Leg 6 10.jpg
 

SWAlexander

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Since my potassium blood test level came back "3" (again) a little low, and my blood sugar drops in the afternoon to about 75, I started with half a banana per day. Reporting soon again
 

SWAlexander

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Now 11 days later. I feel so much better and washed last Friday 5 windows. I waited to crash - nothing happen. Yes, I was a little more tired and my unused muscles slightly were sore, but that´s it.

Tired of waiting for doctors to do something, I ordered histamine and MCAS test directly from a German Lab to see how much I can improve even more.
 

SWAlexander

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I found the culprit and it is: C1orf167, MTHFR (according to my DNA)

I was on the right track with Vit D and detoxing

What does it mean to be heterozygous for MTHFR?
People with a mutation in 1 MTHFR gene are said to be heterozygous; if mutations are present in both genes, the person is said to be homozygous or compound heterozygous for the mutation(s).

What happens if I have MTHFR?
If you have an MTHFR mutation, your MTHFR gene may not work right. This may cause too much homocysteine to build up in the blood, leading to various health problems, including:
Homocystinuria, a disorder that affects the eyes, joints, and cognitive abilities. It usually starts in early childhood.

What happens if I have MTHFR?
How do you detox if you have MTHFR?
MTHFR Mutation and Healing
Incorporate methylfolate-rich foods.
Eat foods high in natural folate.
Support your body's natural detoxification process through infrared saunas, IV glutathione, exercise, healthy foods, and chelation supplements.
Remove mold from your home.
Avoid toxins.
Manage your stress.

What foods to avoid if you have MTHFR?
People with MTHFR mutations may want to avoid foods that contain the synthetic form of folate, folic acid — though the evidence is not clear that's necessary or beneficial. Be sure to check labels, as this vitamin is added to many enriched grains, like pasta, cereals, breads, and commercially produced flours.

1 The MTHFR mutation is also believed to predispose a person to certain cancers, birth defects, and autoimmune diseases.

What vitamins should you take if you have MTHFR?
Most people who have MTHFR benefit from taking methylcobalamin (methylated B12). In addition, consume more natural forms of B12, folate, and vitamin B6 (also important in the process of detoxification), such as beans, lentils, asparagus, broccoli, and avocado.

How long does it take to detox MTHFR?
It can take anywhere from 3-12 months to fully detox the body, and regular detoxing thereafter to maintain energy and keep inflammation at bay.

Can you take ibuprofen with MTHFR?
Avoid medications that can deplete folate or interfere with methylation
when possible: birth control pills, anticonvulsants, antacids, antidepressants, Ibuprofen, aspirin, Metformin, cholesterol-lowering medications like cholestyramine, colestipol and colesevelam, some antibiotics, and some estrogen replacement ...

What supplements help with methylation?
Important methylation support nutrients include:
Riboflavin.
Vitamin B6.
Methylfolate.
Vitamin B12 in the form of Methylcobalamin.
Choline.
Betaine (trimethylglycine, TMG)
Magnesium.
Zinc.

I think I´m on the mend. ;):)
 

Woof!

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I've been avoiding getting genetic testing done to date for two reasons. First, I just didn't know which companies had the most accurate information and what the level of false information was. Second, I was always so worried about it pin-pointing more preexisting (that is, uninsurable) conditions. The irony of the second thing is, I'm the walking, talking poster child for preexisting conditions anyway. Thank God for Medicare coverage. No private company would want to touch me.

You've got me thinking of getting this testing done, SWA. It may help me pinpoint new tactics to take to feel better.
 

SWAlexander

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I'm the walking, talking poster child for preexisting conditions anyway.
This was my reason too. Living with permanent pain and no diagnosis.
There was a point I ask if I imagine all these symptoms, going crazy.

Example: First, my DNA pointed out that there was only one variant of the ACADM gene that contains instructions for making an enzyme called medium-chain acyl-CoA dehydrogenase (MCAD). The same was with psoriasis, Chiari malformation and many other preexisting conditions.
Later I found out why. 23andme hat only my X chromosome. The second was found after my brother (Y chromosome) was tested.

For me, it was most important not to live in the unknown, believing all these symptoms were only in my head even though I had visible symptoms. If a variation (rs) is registered with NIH they can reveal them.
DNA can find what doctors overlook.
 
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SWAlexander

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I have a mutation at MTHFR, too.
SWA, from where do you have the good information about the MTHFR?

I found in the article by Dr. Jill Carnahan the information that
I assume, if
that does not function we have to deal with too much histamine
MTHFR Health Tips - Jill Carnahan
First, I had many markers in my DNA and in May my oncologist confirmed MTHFR. Yesterday ordered a histamine and stool test (www.igevia.com), to narrow down what kind of histamine is the most active. Till then I continue taking a half Cetirizin at night.

There is extensive literature about ACADM gene MCAD out there. Here is just one source I trust:
"Medium-Chain Acyl-Coenzyme A Dehydrogenase Deficiency":
https://www.ncbi.nlm.nih.gov/books/NBK1424/ and
"MTHFR gene polymorphism, homocysteine and cardiovascular disease" https://pubmed.ncbi.nlm.nih.gov/11683544/

One other point, many doctors understand is, I have also elevated Phytanic acid VLCFA (very long-chain fatty acids) (Gene ABCD1) and low cortisol.
"Brain Lipotoxicity of Phytanic Acid and Very Long-chain Fatty Acids. Harmful Cellular/Mitochondrial Activities in Refsum Disease and X-Linked Adrenoleukodystrophy" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4809606/

This is the reason why not all the same symptoms have the same source and not all medical treatments work the same way. It takes lots of reading and connecting the dots.
 
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