Cured of PEM

Meirav

Member

:Aldose reductase inhibitors are a class of drugs being studied as a way to prevent eye and nerve damage in people with diabetes:

"Aldose Reductase, Oxidative Stress, and Diabetic Mellitus" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3348620/

"ALDOSE REDUCTASE: New Insights for an Old Enzyme" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3085285/

:Glucosidase enzymes catalyze hydrolysis of starch to simple sugars. In humans, these enzymes aid digestion of dietary carbohydrates and starches to produce glucose for intestinal absorption, which in turn, leads to increase in blood glucose levels:

:Alpha-glucosidase inhibitors (AGIs; acarbose, miglitol, voglibose) are widely used in the treatment of patients with type 2 diabetes. AGIs delay the absorption of carbohydrates from the small intestine and thus have a lowering effect on postprandial blood glucose and insulin levels:

I wonder if cuminaldehyde as one of its actions, removed the block at PDH?
 
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Creekside

Active Member
I haven't noticed any problems digesting carbs, so I don't think that's cuminaldehyde's effect on me. Furthermore, I tried holding the ground cumin in my mouth for 5 minutes (for sublingual absorption), then spat it out and rinsed, to minimize possible effects via my digestive system, and that seemed just as effective for me as swallowing the cumin.

Cuminaldehyde blocks aggregation of alpha-synuclein in the brain, which might be involved in ME. However, cuminaldehyde is poorly researched, so it may have lots of presently unknown effects.

The fact that I don't know why cumin was effective for me, and thus didn't expect it to be, is pretty good evidence that it wasn't just a placebo effect. ;)
 

Meirav

Member
I trust that cumin has worked for you - that is not being questioned at all.
I didn't take it to be that the effect is in the brain, since you mentioned that it eliminated physically-induced PEM, and not 'cerebrally-induced PEM (from driving or socializing).'

I have been taking B vitamins and minerals, and they have been helping with PEM too. I also notice that talking, specially talking, and mental activity will get me closer to PEM in less time than physical activity. It's hard to tell with corona and being at home, since I'm not stressing my system much with physical activity, things like cleaning around the house and yardwork are not making me crash. Talking is making me crash fast. I wonder if it is from lack of air from breathing incorrectly. It starts with an area around my brain hurting, and then it is the eyes, and then I crash.

and since we both found things that work for our physically induced PEM, but not the mental ones, I wonder: what about the way the brain is meeting energy demands, or is inflammation being triggered, or waste system not working. Maybe the substances that are making us better don't get to cross blood brain barrier in their format? I wonder. I guess i'm thinking that physical PEM has to do with mitochondria in muscles, and mental/social PEM has to do with brain mitochondria. maybe there are other ways to think about this.
You know how sounds or visual input can also make you crash? That happens once I get into talking and the brain starts hurting.
 
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dejurgen

Well-Known Member
I'm pretty sure it's the cuminaldehyde that was doing its magic. I found a list of components for cumin, and tested other herbs with different subset of the components, and I'm pretty sure it was cuminaldehyde. I couldn't find another source of that to verify it.

As for theories for why it worked for me, I'm still searching. There's just not a lot of research that's been done on cuminaldehyde. I found one mention of cuminaldehyde inhibiting alpha-synuclein agglomeration (the problem causing Alzheimer's), which is at least somewhat plausible. I believe that glial cells are involved in ME, and one job of astrocytes is cleaning A-syn out while we sleep, which could get messed up by immune activation.
Would you by chance have a viral onset ME case or have had EBV or the like at adult age?

The thiosemicarbazone of cuminaldehyde has antiviral properties.[medical citation needed]

That "citation needed" is a bit problematic, but that component does seem to have some beneficial things researched (versus cancer and mold), see below. My guesstimate is that a fair part of cuminaldehyde could be converted to this thiosemicarbazone of cuminaldehyde in the body, but I do not have the time and energy to try and look into that now.

"This paper reports the synthesis and characterization of trans-cinnamaldehyde thiosemicarbazone (Htcin), cuminaldehyde thiosemicarbazone (Htcum) and their copper and nickel complexes. All the compounds, which on healthy cells (human fibroblasts) show a neglectable cytotoxicity, were screened in vitro in cell line U937 for their antileukemic activity."

"Structural modification of cuminaldehyde thiosemicarbazone increases inhibition specificity toward aflatoxin biosynthesis and sclerotia development in Aspergillus flavus"

Aspergillus flavus is a mold. Issie has been diagnosed with a mold forming biofilms in her veins and even some organs. That should be a major cause of imune activation. Being able to reduce it might improve base health and / or recovery.
 

Issie

Well-Known Member
Black cumin seed, both oil and the seed itself, has been talked about in both the Lyme community and also MCAS community. It has been found to be beneficial for both.

That having been said, it was not a good fit for me. Whether or not it was causing a herx due to the either Lyme or the fungus die off (that Dejurgen spoke of, in my blood and was in a thyroid biopsy too. The doctor thinks it was gotten by mosquito bites), or it was just was something I reacted to. I didn't find that I could take it either orally or transdermal. Each time I did, I felt horrible. So it wasn't worth me continuing to try either way. But I'm glad it is working for you. Many feel it does with their MCAS and with killing off pathogens.

At one time I thought curcurmin (I used turmeric) was helpful for pain too (along with ginger - the combo was best. But I have vitiligo and there is debate (especially among certain ethnicity) if that being so high in certain foods, contributes to vitiligo. It has been said to somewhat block catalase enzyme and catalase is thought to be too low in vitiligo. I stopped it for that reason. It is also a warming herb and I found at times it to burn my stomach. I do however still use ginger. It too is warming, but I don't use it often but find it helps inflammation.

Cinnamon is another spice used to help blood sugar. But certain varieties are more toxic than others. Do the research to find the best variety.

Some use a combination of these spices/herbs in tea and coffee. For those who it works well for, it is beneficial. But we all may react differently. And of note... most herbs it is better to rotate on and off of. And go low and slow. We all tend to be super sensitive and less is more.
 

Creekside

Active Member
I didn't take it to be that the effect is in the brain, since you mentioned that it eliminated physically-induced PEM, and not 'cerebrally-induced PEM (from driving or socializing).'
Cerebral triggering might occur directly from brain chemicals, while physical triggering has one or more additional steps between cytokines entering the brain and the mechanism that produces the PEM symptoms. I'm sure I could come up with other hard to prove or disprove possibilities ... and then the real answer would turn out to be a complete surprise.

Talking is making me crash fast. I wonder if it is from lack of air from breathing incorrectly.
<shrug> Maybe? I assume that talking with another person involves a lot of extra cerebral activity, which would have all sorts of biophysical effects. For an experiment, try just talking alone, maybe reading aloud, which should require less cerebral effort while still altering breathing. Alternatively, make a real effort to breathe extra well while talking to someone.

I guess i'm thinking that physical PEM has to do with mitochondria in muscles, and mental/social PEM has to do with brain mitochondria. maybe there are other ways to think about this.
I'm not convinced that mitochondrial dysfunction is a core part of ME. I'm not saying that it isn't, just that I don't consider it the area I'd direct the most research funding to. I'd focus on cerebral immune system malfunction.

You know how sounds or visual input can also make you crash?
I haven't had that problem with inputs. I don't think I've ever actually 'crashed' for any reason; I've just had regular PEM, generally lasting only a day or so.
 

Creekside

Active Member
Would you by chance have a viral onset ME case or have had EBV or the like at adult age?
No obvious viral trigger. I think I'd had a tetanus booster (which isn't viral) some months before my ME started, but I couldn't remember exactly how long before. I did test positive for EBV antibodies, but never was aware of having an unknown viral illness. My symptoms started with or as a type IV food sensitivity, and when I cured that, I couldn't tell the difference. The symptoms remained the same; I just lost the triggering on foods. Type IV sensitivity involves t-cells, so it's similar to viral infection.
 

Issie

Well-Known Member
Did you mean IGG food sensitivities? When you speak of T cells involvement, that could indicate issues with mast cells as histamine will trigger suppressor T cells to activate and helps to slow down responses to histamine. And histamine can be triggered by foods.

Also cumin being known to help some people with MCAS, may explain why it helped you. Tames down mast cell issues for some.

I got worse after vaccines as a child and also with a tetanus shot. It also has lasted way longer than it should have, the antibodies to tetnus. They say it should only last 10 years. Mine was still good long after that.

When was your EBV in relationship to your ME?

I know that Mitrochondria can be a part of the puzzle. It is with me.

But I agree with you that there is inflammation and autoimmune issues and very probably genetic factors involved. (Pick your order.) There is no one thing. It is a complex, multifaceted picture with many individual pieces and it may be slightly different for each one of us. Though we walk the same journey, we all have our own shoes to wear. Finding the right fit and what will give us comfort.....is an individual discovery in itself. 💜
 

Creekside

Active Member
Did you mean IGG food sensitivities?
Nope, I had Type IV delayed food sensitivities. That doesn't involve IG cells. I didn't have any Type I food allergies or histamine problems.

Last I heard, tetanus vaccines were good for 50+ years. If I'd known that, I wouldn't have gotten the booster. Tetanus isn't incurable either, just less convenient than having antibodies.

When was your EBV in relationship to your ME?
I have no idea. I can't remember having anything resembling EBV infection. A blood test simply showed that I had the antibodies for it, but no active infection. From what I've read, most people have the antibodies without knowingly having an infection.

From a quick google:
"Most people will get infected with EBV in their lifetime and will not have any symptoms."
"Many people become infected with EBV in childhood. EBV infections in children usually do not cause symptoms, or the symptoms are not distinguishable from other mild, brief childhood illnesses. People who get symptoms from EBV infection, usually teenagers or adults, get better in two to four weeks."

I vaguely recall having normal childhood and teen illnesses, but in those days, kids weren't rushed in for testing to identify which virus was involved, so if I did have symptoms from EBV, I wouldn't have know what it was.
 

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