PEM experiment = COQ10 Any volunteers?

[Leopardtail]

Have they checked you for any of the autoimmune or other markers of Type I Diatbetes? With the almost non-existent amount of carbs you get, it's shocking that your blood glucose rises much at all. But with Type I, glucose levels can still get high due to a sometimes extreme inability to produce insulin.

It's also not always at the same level of severity. My fiance came down with Type I a couple years ago, and his need for insulin can fluctuate a lot, regardless of eating the same thing every day. Basically cells other than the Beta insulin-producing ones can be getting attacked in Type I to cause the diabetes, so the damage done isn't always necessarily permanent and/or consistent.

Tania suffers hyperinsulinaemia Valentijn

 

[Leopardtail]

There is this:
http://www.ncbi.nlm.nih.gov/pubmed/23733436

http://www.ncbi.nlm.nih.gov/pubmed/22771318

It looks highly interesting. I'd like to know more about this "CFS rat model" referred to in the text. We can make a "diabetic rat model" because we know the cause. How is this CFS model constructed?

 

[KENNY-SILVERS]

Sooo I was in bad shape I MEAN bad shape. I didn't feel viral nor sick per say, just inability to produce energy and horrible PEM.

Then I increased my dose of COQ10 from 400mg a day to 1200mg/ Day (400mg each meal). And I IMMEDIATELY got better.

This is not the first time, I just never put 2 and 2 together since I used to change more stuff at once, but since I am stable I do not make Much changes to meds or supplements anymore. I also went down hill when I reduced it (TOO EXPENSIVE).

I am wondering if somebody can test this and tell me if you (HAVE VIRAL UNDER CONTROL) and increase CQ10 if PEM goes away??? I even been walking aerobic??? I know I can crash but I am testing waters.

 

[KENNY-SILVERS]

What's a PEM . Is COQ10 a antioxidant ?

 

[Leopardtail]

What's a PEM . Is COQ10 a antioxidant ?

PEM = Post Exertional Malaise, that horrid tiredness or illness we get following activity and sometimes with delay.
CoQ10 does at least two things, it's both an antioxidant, and part of the body's energy generation system.

 

[KENNY-SILVERS]

Thanks - I've always heard good things with CoQ10

 

[taniaaust1]

Insulin resistance is known in ME, but not widely accepted. This causes hyperinsulinaemia, when you fix ATP production, the improvement in Insulin perormance creates a temporary risk of hypoglycaemia but only until the excess insulin is used up. For me it just meant the need to watch my BMs and eat ,more for a couple of days. You will need to watch yourself both with CoQ10 and with Ribose. The short answer though is that everything that makes you well, creates this risk, it's a part of the healing process you have to live with.

My insulin issue would be probably cause I have PCOS.. 90% of those with PCOS have insulin resistance by the age of 40 (I think it was). So at least that is something I cant blame the ME for.

Your blood sugars won't be entirely due to Insulin resistance though (and you may not have it all), your high adrenalin levels will push blood sugars up and create demand for more Insulin.

I definately got insulin resistance.. normal max was around 50.. mine was nearly 150.

You will need to watch yourself both with CoQ10 and with Ribose.

I have tried ribose in the past for the ME (back before my sugar started going up).. and found ribose was no help to me at all.

Have they checked you for any of the autoimmune or other markers of Type I Diatbetes? With the almost non-existent amount of carbs you get, it's shocking that your blood glucose rises much at all.

@Valentijn Those with type 1 dont produce any insulin if Ive read about it right (so wouldnt get high insulin), so I cant have that as I have excessive insulin levels. I was shocked to see my glucose go up 2-3 points to 7.8 (or something like that) just from a salad of lettuce, cucumber, capsicum (it had two of the tinest slices of tomato in it). I truely didnt expect to see an increase from a lunch of that .. basically no carbs in that (expect the very small 2 bits of tomato).

I havent had any lab tests to see what my body is doing now as I cant get to appointments again (Ive rang my advocate about this again today).

 

[taniaaust1]

It looks highly interesting. I'd like to know more about this "CFS rat model" referred to in the text. We can make a "diabetic rat model" because we know the cause. How is this CFS model constructed?

For the CFS animal model. I want to know how they can tell that mouse has more then just fagitue? When most of our CFS symptoms arent testable eg headache etc etc how on earth do they know a mouse has them?

 

[Leopardtail]

For the CFS animal model. I want to know how they can tell that mouse has more then just fagitue? When most of our CFS symptoms arent testable eg headache etc etc how on earth do they know a mouse has them?

Most effective such models involve chemically damaging the mouse to induce the disease - which is why I wonder how they could produce one since one has to know what damage to do.

 

[Seven7]

Update:

I went on vacation and only had one mini crash (after I MEAN DOING EVERYTHING) cooking, excercising, swimming..... The one thing is even I have more energy and I do feel better, I still have to watch not to go crazy. Going to try to increase more and see what happens. Also the latest I can take a dose is 4pm Or no sleep.

 

[knackers323]

I'm trying big doses of coQ10 but seeing no result. Does it need anything else with it to work?

 

[Mij]

I'm increasing my dose to see what effects it might have. Since my levels tested average yrs ago I don't think I will see major improvements, I like to take it as a preventative measure since I I tested high for oxidative stress. I also take other antioxidants.

http://www.ncbi.nlm.nih.gov/pubmed/23659338

 

[heapsreal]

I'm trying big doses of coQ10 but seeing no result. Does it need anything else with it to work?

Consider acetyl carnitine, then there is creatine and ribose to help make ATP. Hard to know which part or function of the mitochondria are playing up.

I have gone from 100mg twice a day of q10 to 400mg just in the morning, cant say i have noticed much. Today i have increased my acetyl carnitine from 500mg to 1000mg in the morning, will see what happens.

Im looking more into exercise/activity type recovery and waste products like lactic acid and ammonia and ways to remove them. OKG which i have mentioned in other threads and recommended by my doc but also BCAA/branched chain amino acids can help with protein synthesis and removal of ammonia and lactic acid?? This could be apart of the reason for PEM.

It seems to me that people have more issues recoverying from activity then producing energy to do activity when one is fully rested??

 

[Leopardtail]

I'm increasing my dose to see what effects it might have. Since my levels tested average yrs ago I don't think I will see major improvements, I like to take it as a preventative measure since I I tested high for oxidative stress. I also take other antioxidants.

http://www.ncbi.nlm.nih.gov/pubmed/23659338

Provided you do not have a corn allergy my first instinct would be to start with Ribose + CoQ10 + ALCAR.
If they don't work some people find adding NADH helps (must be sub-lingual).

At lot depends on your full symptom profile, everybody with ME is subtly different.

 

[Leopardtail]

My insulin issue would be probably cause I have PCOS.. 90% of those with PCOS have insulin resistance by the age of 40 (I think it was). So at least that is something I cant blame the ME for.

I definately got insulin resistance.. normal max was around 50.. mine was nearly 150.

Yes I understand that tania, what I was trying to say was that your high Insulin levels can have two causes: Insulin resistance (this means cells do not respond fully to Insulin), Counter action (this means other hormones are working against the insulin).

What medication are you on for the PCOS insulin resistance?

 

[Mij]

Provided you do not have a corn allergy my first instinct would be to start with Ribose + CoQ10 + ALCAR.
If they don't work try a short course of NADH (must be sub-lingual).

At lot depends on your full symptom profile, everybody with ME is subtly different.

I don't have a corn allergy. Why would that make a difference? I take ALCAR and R+Lipoic Acid. I took Ribose supplements my doctor rec'd years ago for 6 months but didn't take the 3 you mentioned together. I've improved some since going back on digestive enzymes, malabsorption is a big problem for me.

I recently ordered a supplement with Shilajit and Ubinquinol combined. Will post if I notice anything different.

 

[Leopardtail]

I don't have a corn allergy. Why would that make a difference? I take ALCAR and R+Lipoic Acid. I took Ribose supplements my doctor rec'd years ago for 6 months but didn't take the 3 you mentioned together. I've improved some since going back on digestive enzymes, malabsorption is a big problem for me.

I recently ordered a supplement with Shilajit and Ubinquinol combined. Will post if I notice anything different.

Ribose is made from corn/maize, hence there can be tiny amounts of corn residue present if people are allergic

 

[Seven7]

@heapsreal The excersice physiologist told me to use alkalized water once a day, I use the ph balancer drops when I get too much latic acid pain like. But others use baking soda.

 

[heapsreal]

@heapsreal The excersice physiologist told me to use alkalized water once a day, I use the ph balancer drops when I get too much latic acid pain like. But others use baking soda.

Yes considering baking soda/sodium bicarb, buffering substances. Whats interesting is researching into info on waste products produce by exercise and activity, lactic acid comes up as well as ammonia. Alot of the things im finding are to do with race horses, they seem further advanced then humans in some ways. They seem to be very pro things to buffer lactic acid and scavenge ammonia, using things like certain amino acids like arginine and ornithine. Many of these seem to be done by injections of some sort, so its hard to tell if oral supplementation would be as helpful, as well as dosing would be different??

Intersting as i think we seem to be more interesting in trying to create energy and not so much focus on recovery??

 

[Seven7]

@heapsreal Intersting as i think we seem to be more interesting in trying to create energy and not so much focus on recovery??

I try to keep my job while I increase energy and the eternal Hunt for a cure. I am trying to do both. I am in a stand still about the cure topic, I am kinda stuck. Everything I do feels like symptom control. But is hard to attack the issue when we do not know what the original problem is!