Klimas et al Questions

[heapsreal]

I don't have any links handy, but I remember heaps has a good thread on it. If he is nice, he will post the link here

Im passing the buck to meryl, shes got some good info on mito conditions. But generally supps used are q10 and carnitine if that helps and we seem to be low in both of these nutrients going by studies i have seen.

 

[maddietod]

But how do you know your mitochondria aren't working right?

 

[heapsreal]

But how do you know your mitochondria aren't working right?

I havent had any mito testing, i just use q10 and carnitine as they are good antioxidants that are found low in cfs/me and are helpful for the mitochondria. U can get q10 levels testing etc but here in the land down under its quite expensive, so its just cheaper to take q10 then to get testing?? I really dont know about mito testing? Other supps used for mito conditions which they say help with energy are nad/nadh, ribose and creatine. Alot of these supps people here just try them and see how they go?

 

[adreno]

Yeah, I don't know name of the tests. But something that shows NADPH levels would probably shed some light on this. Just the fact that you have ME gives it an extremely high probability of your ATP levels being low. I believe it is one of the biomarkers of ME. Rich has written about this. It has been discussed in several threads I believe.

As heaps says, treatment options would include: R-ALA, carnitine, ubiquinol, PQQ, magnesium, creatine, d-ribose, NAD, B2, B3, pantethine, adenosylcobalamin. Also, ATP production is tied to methylation, so you need to treat that as well. You really can't separate these biological functions. That means methylcobalamin, methylfolate, B6, B2, perhaps TMG and NAC. Also fish oil for membranes, and a choline source, CDP-choline or phosphatidylcholine and zinc. Piracetam also improves mito function. You really need to be on a battery of supplements. Exercise also creates new mitochondria.

 

[PhoenixBurger]

Callie - I have a suggestion and I hope you'll find it hilarious enough that you will actually try it. Its actually a lot more wise than you may think upon hearing it, and it directly relates to Mitochondrial dysfunction, which can affect every organ in the body including the brain and nerves.

Have you tried juicing ?

Yes im serious. With all the meds you're on, there is one thing that you can drink in a glass that is nearly 100% pure "health". The thousands upon thousands of phyotnutrients that facilitate proper functioning in the body .... in a single glass of juiced organic greens .... you would be floored. It takes weeks. But I believe if this is omitted from your daily life, your body is suffering. I could talk for hours on this, as it has begun helping my situation significantly ... but ill keep it simple and let you (i pray) give it a try:

1) Omega 3 Juicer
2) Organic vegetables - daily - 24 ounces if you can swing it.
3) Watch this video (everybody):

By the way - Callie - the post immediately above from Adreno - I dont even know the guy and we have completely different universes that are totally separate, and every single thing he wrote above as far as recommendations are *the* most targeted, accurate recommendations a person could come up with. Everything he wrote is right on track. Also, I would highly recommend ProPax with NT Factor ... its a vitamin supplement which you can buy online that has been used in numerous studies (see pubmed search NT Factor) ... to address ATP production, mitochondrial dysfunction, and energy creation. Clinically proven to work for people with damage including Cancer Chemotherapy recovery. Very gentle on the body as well. It has the majority of what Adreno mentions above.

Additionally there's a product called ProBoost with Thymus Extract which has clinical backing as an immune boosting / support / modulator. I have been trying it for a couple weeks as I have a current active CMV infection going on. Also no side effects and gentle.

The video above however reveals what I believe to be the true nectar of pure health. She eats everything whole. I juice .... get much more that way.

Blessings all.

 

[adreno]

Some comments about ProPax and juicing. Many members have problems with multis, because they might contain things we don't tolerate, or not in the right ratios. This one also contains folic acid, which is pure poison. Pure Encapsulation and Thorne has some good multis, IMO, but really I prefer to take everything separately in the forms and ratios that suit me. For instance, I don't want copper or manganese, but I want high doses of zinc and molybdenum. This might be different for others.

Regarding juicing, in general I agree vegetables are healthy and important. Just be careful though, if you have CBS or SUOX mutations, or your methylation cycle isn't working, you might not be able to detox all the sulfur and other stuff. Some also have problems with oxalate or salicytes. I know every time I try one of those super green drinks I feel horrible. In many ways I think we are actually worse off than people with MS.

 

[CallieAndToby]

Callie - I have a suggestion and I hope you'll find it hilarious enough that you will actually try it. Its actually a lot more wise than you may think upon hearing it, and it directly relates to Mitochondrial dysfunction, which can affect every organ in the body including the brain and nerves.

Have you tried juicing ?

Yes im serious. With all the meds you're on, there is one thing that you can drink in a glass that is nearly 100% pure "health". The thousands upon thousands of phyotnutrients that facilitate proper functioning in the body .... in a single glass of juiced organic greens .... you would be floored. It takes weeks. But I believe if this is omitted from your daily life, your body is suffering. I could talk for hours on this, as it has begun helping my situation significantly ... but ill keep it simple and let you (i pray) give it a try:

1) Omega 3 Juicer
2) Organic vegetables - daily - 24 ounces if you can swing it.
3) Watch this video (everybody):

By the way - Callie - the post immediately above from Adreno - I dont even know the guy and we have completely different universes that are totally separate, and every single thing he wrote above as far as recommendations are *the* most targeted, accurate recommendations a person could come up with. Everything he wrote is right on track. Also, I would highly recommend ProPax with NT Factor ... its a vitamin supplement which you can buy online that has been used in numerous studies (see pubmed search NT Factor) ... to address ATP production, mitochondrial dysfunction, and energy creation. Clinically proven to work for people with damage including Cancer Chemotherapy recovery. Very gentle on the body as well. It has the majority of what Adreno mentions above.

Additionally there's a product called ProBoost with Thymus Extract which has clinical backing as an immune boosting / support / modulator. I have been trying it for a couple weeks as I have a current active CMV infection going on. Also no side effects and gentle.

The video above however reveals what I believe to be the true nectar of pure health. She eats everything whole. I juice .... get much more that way.

Blessings all.

Thanks. Writing stuff down.

 

[PhoenixBurger]

Its not an Omega 3 juicer. My mistake. Its this one:
http://www.amazon.com/Omega-J8006-N...8&qid=1356706810&sr=8-3&keywords=omega+juicer

But yes I would also listen to adreno's post immediately above. Maybe see what vegetables you can tolerate before you go drinking pure extract from them via a juicer.

 

[Old Salt]

Look into high night time cortisol. Usually a 4 times a day saliva test is used for this and normally ordered by an intergrative practioner but i think in the States u dont need a doc to order these tests??

Yes, the Cortisol saliva test can be ordered on line in the States (Google) but I thought it was very tricky to deal with, even if you can find someone qualified to deal with it.

 

[adreno]

Callie, the fact that you have severe OCD and feel wired all the time makes me guess that your glutamate/gaba balance is out of whack. People with OCD have been found to have high levels of glutamate (excitotoxicity). I believe it is very common in ME also. Dr. Yasko says it's a very important component.

There are things you can take to calm you down a bit, they include magnesium, potassium, taurine, l-theanine, lithium, zinc and B6 (converts glutamate to gaba). There is also evidence that glycine and NAC may be very effective.

When the glutamate/gaba ratio is off, it is usually a sign of deeper underlying problems, like dysfunctional methylation. So ultimately you need to get help with some testing and help with that, but if you have any of those supplements lying around in the cupboard you could give them a whirl. Benzo's should also help with this (I believe you mentioned one), so should gabapentin. I would rather not use them as a long term solution, as they do bad things to cognition and learning, but for "first aid" they are very safe drugs.

 

[aquariusgirl]

what's the phone no for rey's office pls? tnx

 

[maddietod]

305-595-4300.

 

[HTree]

I think you wait 6 weeks for the lab results. Then you have a phone consultation to go over the results. Because it turns out I have Lyme disease, which has to get treated first, I don't know how the next steps work. But I had expected to start a treatment regimen immediately, and to schedule phone consultations and follow-up visits as needed. It's not hard to get a phone consult once you're a patient, and Dr. Rey answered an emergency question of mine by phone, within an hour. [I emailed, she called.]

Madie

madietodd, I am a patient of Dr. Rey's too. Also think I might have Lyme; tested with another doctor who thinks I do, my Igenex labs were:


IFA : 1:80 titer, reference = or > 1:80 is positive, so I was positive

Western Blot IgM had positive Bands: 31 and 41 with 39 Indeterminate.
By Igenex criteria, this is considered Positive. CDC doesn't think band 31 is relevant, so by CDC criteria was negative.

Western Blot IgG had positive Bands: 23-25 ; and 41 ; both 34 and 39 were Indeterminate.
Again by Igenex this was considered positive, but not by CDC criteria.

So, Not strongly positive as CDC requires, and Dr. R doesn't necessarily believe in Igenex labs.
Just wondering--were your labs for lyme more strongly positive? Is that why Dr. R is suggesting you do antibiotics first?

Thanks for your thoughts!
Htree

 

[maddietod]

"Lyme as screen" 1.73, positive (>1.10)

IgG only band 41.

"Lyme disease AM (IGM) WB" positive
bands 23 and 41 positive, band 39 nonreactive.

My IgM test only shows bands 23, 39, and 41; I don't think they test any other bands. I've read that certain bands are specifically diagnostic for Lyme, and some others aren't so specific? So maybe it's band 23 that's important.

Dr. Rey wrote "+ LYME" beside the IgM result.

I hope this helps!

Madie

 

[HTree]

"Lyme as screen" 1.73, positive (>1.10)

IgG only band 41.

"Lyme disease AM (IGM) WB" positive
bands 23 and 41 positive, band 39 nonreactive.

My IgM test only shows bands 23, 39, and 41; I don't think they test any other bands. I've read that certain bands are specifically diagnostic for Lyme, and some others aren't so specific? So maybe it's band 23 that's important.

Dr. Rey wrote "+ LYME" beside the IgM result.

I hope this helps!

Madie

Huh, yes Madie I think CDC criteria does not consider band 31 lyme specific, but 23 is. I think you're right.
May I ask: what Lab did you use? was it one Rey suggested-- and did you test with any other docs/labs?
Thanks! Good luck with treatment
Peace,
Htree

 

[maddietod]

Quest ran the Lyme test. She just put it on the blood draw order for me to do when I got home. But it seems that Lyme testing is a mess. My positive means I've got it, but there's no way of telling how long I've had it or how virulent it is at the moment. I've just got antibodies. So then after treatment, there's no way of knowing if it's gone, because the antibodies linger. I couldn't get a straight answer about for how long. I think that's why there are such different ideas about how to treat it........there aren't good tests yet to see what's going on in real time.

I'm looking into this test:
http://lymedisease.org/news/touchedbylyme/lyme-test-research.html

 

[Sushi]

Quest ran the Lyme test. She just put it on the blood draw order for me to do when I got home. But it seems that Lyme testing is a mess. My positive means I've got it, but there's no way of telling how long I've had it or how virulent it is at the moment. I've just got antibodies. So then after treatment, there's no way of knowing if it's gone, because the antibodies linger. I couldn't get a straight answer about for how long. I think that's why there are such different ideas about how to treat it........there aren't good tests yet to see what's going on in real time.

I'm looking into this test:
http://lymedisease.org/news/touchedbylyme/lyme-test-research.html

This test seems good at detecting a "live" infection: http://www.infectolab.de/index.php?id=51&L=1

It is not an antibody test.

Sushi