Im outta here. Thank you for everything.

[Murph]

what's ALA again?

 

[sb4]

what's ALA again?

alpha Lipoic-Acid. It's used in the pyruvate dehydrogenase complex and can chelate, is an antioxidant, etc.

 

[valentinelynx]

Hmm. When I tried ALA it made me feel worse. And no I don't think it's from mercury. I have no fillings.

 

[ljimbo423]

what's ALA again?

Alpha lipoic acid (ALA) inhibits pyruvate dehydrogenase kinases (PDK's) and PDK's inhibit pyruvate dehydrogenase complex (PDC).

So ALA, like DCA, can allow PDC do work better which helps the krebs cycle work better, therefore increasing oxidative phosphorylation and the creation of ATP (energy) too.

If you look to the left on the diagram, you see it shows DCA and ALA inhibiting the pyruvate dehydrogenase kinases-

This paper also talks about ALA inhibiting PDK's-

An inhibitory effect of lipoic acid on PDKs would result in less phosphorylation of E1 and hence increased PDC activity.

This finding provides a possible mechanism for a glucose (and lactate) lowering effect of R-lipoic acid in diabetic subjects.

LINK

Jim

 

[Learner1]

Hmm. When I tried ALA it made me feel worse. And no I don't think it's from mercury. I have no fillings.

ALA can pull heavy metals out of mitochondria. See attached image - the black blobs are arsenic in mitochondria.

After starting ALA, I had acute arsenic toxicity measured on a blood test after many tests showing no arsenic prior to starting ALA. Partially metabolized arsenic is more toxic than what is stored. It took beefing up my Phase II and III detox, coupled with the ALA to get the arsenic out of me. Arsenic also inhibits ATP production so getting rid of it allows more energy to be made. Curcumin is a big help, too. And biotin is needed with ALA supplementation.

 

[raghav]

I cannot tolerate curcumin. It makes me restless and the next day I get a bowel attack. Any idea why it is so ? I take turmeric as a part of my daily diet from an early age but I am not able to tolerate higher doses as found in supplements.

 

[Learner1]

Even though curcumin has some great properties, as an antioxidant, Phase II detoxer" cancer fighter, and COX-2 inhibitor, there's always the possibility you might be allergic to it or how it's processed, especially if you have MCAS.

It has been an amazing help to me, however.

 

[valentinelynx]

I cannot tolerate curcumin. It makes me restless and the next day I get a bowel attack. Any idea why it is so ? I take turmeric as a part of my daily diet from an early age but I am not able to tolerate higher doses as found in supplements.

Interesting. You being in India, I would expect that, if you eat what I think of as a typical Indian food diet, that you already are consuming plenty of turmeric, from which curcumin is derived. So you probably get plenty.

Personally, I have terrible NSAID enteropathy, and am trying to find out what keeps my small intestine bleeding despite not taking NSAIDs anymore. Some supplements, including curcumin, have NSAID-like activity (Cox inhibition), so I've stopped taking my curcumin supplements. Don't know if it's helped yet.

 

[dannybex]

I have the same problem with both ALA and coq10. I got coq10 in a powder, in 30mg capsules, so I can go up 5-10mg at a time.

I do the same with ALA, that way I don't get over stimulated and my HR don't skyrocket.

I think that happens because they both stimulate the mitochondria.

Jim

Lipoic acid also increases acetylcholine production, which can be overstimulating.

 

[dannybex]

I know it's alcohol. I can trigger a brutal ME attack with it that takes days and days to get over.

It may be that your past alcohol abuse caused some major mitochondrial dysfunction, which naturally would have symptoms similar to ME/CFS.

https://www.ncbi.nlm.nih.gov/pubmed/11351133

 

[Wayne]

Lipoic acid also increases acetylcholine production, which can be overstimulating.

Hi Dan,

Good to see your post. Thought I'd do a quick reply to say hi. I hope you're doing well.

Thought I'd also mention I recently started taking Huperzine A (which increases acetylcholine). It's turned out to be one of the better things I've done to help with my brain function. I was taking one a day--to stretch it out, but I just ordered a larger size, and plan to start taking 2/day. We'll see how that goes.

All the Best! -- Again, good to see your post.​

 

[CCC]

Hi Wayne,

A group of us on a Lyme forum are trialling huperzine A with great success, but you can apparently build up a tolerance to it, so we are taking it very second day. It is to do with how long it lasts in the body. This works well for everyone I know who has tried it.

We're taking it in combination with daily ALCAR and Alpha GPC.

My son's own experience was that he started to flake a bit towards the end of the second day for the first week or two, but this has now smoothed out quite well. To be fair, one of the benefits has been his energy has increased enough to eat more, and his energy has smoothed out as a result.

Hi Dan,

Good to see your post. Thought I'd do a quick reply to say hi. I hope you're doing well.

Thought I'd also mention I recently started taking Huperzine A (which increases acetylcholine). It's turned out to be one of the better things I've done to help with my brain function. I was taking one a day--to stretch it out, but I just ordered a larger size, and plan to start taking 2/day. We'll see how that goes.

All the Best! -- Again, good to see your post.​

 

[Wayne]

A group of us on a Lyme forum are trialling huperzine A with great success, but you can apparently build up a tolerance to it, so we are taking it very second day. It is to do with how long it lasts in the body.

Hi @CCC,

Thanks for that! Could you by any chance provide a link to that forum (I have a Lyme diagnosis as well). The tolerance that can develop for Huperzine A reminds me that the mucuna pruriens I just ordered (but have not yet received).

It has the precursor for dopamine, and is used extensively for Parkinson's around the world, and is purportedly as good a result as the drug l-dopa--with much less risk. But apparently you can build up a tolerance to it as well, and a lot of people take it every other day, siimilar to what's being done with Huperzine A. -- Thanks again for that tidbit!​

 

[dannybex]

Hi Dan,

Good to see your post. Thought I'd do a quick reply to say hi. I hope you're doing well.

Thought I'd also mention I recently started taking Huperzine A (which increases acetylcholine). It's turned out to be one of the better things I've done to help with my brain function. I was taking one a day--to stretch it out, but I just ordered a larger size, and plan to start taking 2/day. We'll see how that goes.

All the Best! -- Again, good to see your post.​

Hi @Wayne,

Good to see you too. I'm hangin' in there. Could be a lot better, but could be worse too, thanks.

I've heard of huperzine A but haven't looked into it. Are you taking it in the morning? Does it make you more alert or mainly help get rid of brain fog?

 

[CCC]

Hi @Wayne
The forum thread is here:

https://www.healingwell.com/community/default.aspx?f=30&m=3928795
and the continuation at: https://www.healingwell.com/community/default.aspx?f=30&m=3931788)

If you have the energy to read through the whole thing, you'll see it's based on the idea that Lyme toxins increase the breakdown of acetylcholine via acetylcholinesterase. This approach reduced the breakdown. Something about it works for us.

We've needed only about 25 mg of Huperzine A every two days - but most others are taking much more. I'm thinking of upping the dose.

Hi @CCC,

Thanks for that! Could you by any chance provide a link to that forum (I have a Lyme diagnosis as well). The tolerance that can develop for Huperzine A reminds me that the mucuna pruriens I just ordered (but have not yet received).

It has the precursor for dopamine, and is used extensively for Parkinson's around the world, and is purportedly as good a result as the drug l-dopa--with much less risk. But apparently you can build up a tolerance to it as well, and a lot of people take it every other day, siimilar to what's being done with Huperzine A. -- Thanks again for that tidbit!​

 

[Violeta]

In order to scientifically determine what factors might be possible triggers or causes of ME/CFS, you have to perform a study on a large group, and see if certain factors are statistically associated with ME/CFS.

For example, studies have shown that significant exposure to organophosphate or organochlorine pesticides is statistically a risk factor for ME/CFS. One study in Scotland found the prevalence of ME/CFS among farmers with significant organophosphate pesticide exposure to be 4 times higher than the normal UK prevalence.

You cannot determine risk of trigger factors in any other way. So when someone is guessing that their trigger factors were alcohol, wheat, MSG or whatever, that does not really mean anything. You simply cannot determine triggers in this guessing way, without conducting a statistical study.

If you wanted to show that alcohol abuse was trigger or risk factor for ME/CFS, you would have to conduct a study on alcoholics, and demonstrate a higher rate of ME/CFS among alcoholics.

@Hip I saw a lot of information by you about enterovirus, and I am wondering if you have similar info about EBV. I tried to search for it but it's not coming up. Thanks.

 

[btdt]

I get a bad reaction to steroids had to be left sitting in the hosp ... to think over if I would take prednisone for an anaphalaxic reaction...sounds crazy I know but that is how important my brain is to me... I had previously decided my brain was the top concern... and I would protect it at all cost... prednisone messes up my head profoundly and quickly...

I took the drug eventually but felt like I was picking poison out of the docs hand with each pill I ate... had the usual reaction... can't drive don't leave home .. forget everything altered state... take them as little as I can. I had a long term use of steriod pills for an infection after I broke my jaw in a car accident ... infection lingered for a year at least.. steroid for 6wks... too long ago to recall any reaction then... it was before cfs. can't draw any conclusion as I can't remember specifics other than what I have just typed.

I take R ALA one in the morning to start the day.... I am inconsistent as I forget a lot... I also take it when I am having a reaction to smells it seems to help. I can't quite get my head around the science just now... thought I would add my two cents .... I have had a most of teeth out due to infection... of one sort or another the last few years and am thinking that has lowered my murcury load... hope it helps anyway... miss my teeth but not a bad trade of to help get well. I am assuming taking out the entire tooth is safe... surely a lot cheaper than trying to replace fillings... there is no guarantee I would not react badly to the next filler.... so it seemed like the best option.. I still have some fillings as I still have some teeth... but much less. I am hoping not to have a problem with mercury....

 

[Hip]

@Hip I saw a lot of information by you about enterovirus, and I am wondering if you have similar info about EBV. I tried to search for it but it's not coming up. Thanks.

Was there anything specific you are looking for about EBV? Treatments perhaps?

I have not got as much info on EBV, but there seems to be less ME/CFS research on EBV anyway. In the case of enterovirus, there are lots of studies showing direct evidence of enterovirus infection in the muscles, stomach and brain tissues of ME/CFS patients.

But for the herpesviruses like EBV, there is not this sort of research available on where the viral infection lies in the body (I did see one study which found EBV in the muscles of ME/CFS patients, but that's all I have seen). I don't think anyone has found a reservoir of herpesviruses in the tissues of ME/CFS patients, in the way that reservoirs of enteroviruses are found.


Though there are quite a few studies showing that ME/CFS appears after glandular fever (mononucleosis), an illness usually caused by EBV (I can post the links to these if you like).

There is also some info about Dr Martin Lerner's studies on the use of Valtrex and Valcyte to treat EBV-associated ME/CFS and herpesvirus ME/CFS in general in this post.

His studies find that Valtrex or Famvir are pretty effective for treating ME/CFS when there are no other infections apart from EBV; but when the patient also has CMV or HHV-6 co-infections, then he uses Valcyte (as Valtrex / Famvir do not work for CMV or HHV-6).

 

[Violeta]

Yes, treatments, diet, antioxidants, anything in depth. I am past the worst of it now, lymph nodes down, fever gone and rash is clearing up, but I need to find a way to get myself out of the constant viral siege. Last year I had shingles and for several years in a row previous had herpes simplex outbreaks.

I am trying to transition to a low protein diet, which is helping. Too late for the antiviral meds.

Muscles do ache especially when walking up stairs, which was one of my first symptoms when I came down with chronic fatigue.

I'll try to get back on monolaurin and lysine.

Thanks for your input. I appreciate it.

 

[Hip]

I have not yet posted the details, but some analysis and calculations I did of antiviral supplements and herbs showed that most were pretty poor in vivo, when taken by humans (even though the studies showed they worked in vitro — but there's good reasons why in vitro do not always translate to in vivo).

One exception seemed to be andrographolide from Andrographis paniculata, which from what I can make out, has moderately strong effects: see this post. Careful with dosing though as this herb may have toxic effects at higher dose levels.

Though even with the most potent antiviral drugs, Dr Lerner found it takes 3 to 4 months to even begin to see benefits, and a year or two for the full benefits to manifest. So it seems like a slow process when you take antivirals for herpesviruses.