My Prof De Meirleir patient experience...
- Thread starter Tony
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Hi, michal.
I'm glad to hear about the improvements you have experienced.
Concerning the heart issues, Dr. Paul Cheney (who is well-known to Dr. de Meirleir) has found that nearly all his CFS patients have diastolic dysfunction of the heart. This is not always found in conventional testing of the heart, so it may be possible that you have it, even though your tests were normal.
In my hypothesis, the diastolic dysfunction is caused by glutathione depletion in the mitochondria of the heart muscle cells. The glutathione depletion in turn is associated with a partial block in the methylation cycle. Dr. de Meirleir is also familiar with my work, and I was interested to read in an earlier post that he had recommended treating the partial methylation cycle block using folinic acid and liposomal glutathione. Based on work in autism, I have found that combining a relatively high dosage of vitamin B12 in the hydroxocobalamin form, taken under the tongue (sublingually) with active forms of folate (folinic acid and 5-methyl tetrahydrofolate) is an effective treatment for the partial methylation cycle block in most cases of CFS. It's also helpful to take the vitamins and essential minerals, and to make sure to get enough protein in the diet to keep the amino acids up. You can find more discussion of this in the methylation section of this forum.
I hope this is helpful.
Best regards,
Rich
I'm glad to hear about the improvements you have experienced.
Concerning the heart issues, Dr. Paul Cheney (who is well-known to Dr. de Meirleir) has found that nearly all his CFS patients have diastolic dysfunction of the heart. This is not always found in conventional testing of the heart, so it may be possible that you have it, even though your tests were normal.
In my hypothesis, the diastolic dysfunction is caused by glutathione depletion in the mitochondria of the heart muscle cells. The glutathione depletion in turn is associated with a partial block in the methylation cycle. Dr. de Meirleir is also familiar with my work, and I was interested to read in an earlier post that he had recommended treating the partial methylation cycle block using folinic acid and liposomal glutathione. Based on work in autism, I have found that combining a relatively high dosage of vitamin B12 in the hydroxocobalamin form, taken under the tongue (sublingually) with active forms of folate (folinic acid and 5-methyl tetrahydrofolate) is an effective treatment for the partial methylation cycle block in most cases of CFS. It's also helpful to take the vitamins and essential minerals, and to make sure to get enough protein in the diet to keep the amino acids up. You can find more discussion of this in the methylation section of this forum.
I hope this is helpful.
Best regards,
Rich
Tony
Still working on it all..
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Ive just started another course of antibiotics (enteric coated) for 10 days and will follow with 20 days of probiotics (S. Boulardii).
Next month I switch to a different a/b for 4 days and the rest of the month the probiotic. The third month will be another dose of a/b's for 10 days followed by probiotics.
Im also changing from folic acid to 5MTHF and will be adding Readisorb Liposomal Glutathione as soon as they arrive.
Another interesting addition is taking calcium carbonate 1000mg with the digestive enzymes one hour after the two main protein meals of the day. This is meant to aid digestion by helping the enzymes to work in a less acidic environment that is generally too high in the GI tract even though it can be low in the stomach.
As for overall health Ive generally been more worn than previously but just the last few days I seem to have made a bit of a comeback. Time will tell if this lasts, so fingers crossed...
Next month I switch to a different a/b for 4 days and the rest of the month the probiotic. The third month will be another dose of a/b's for 10 days followed by probiotics.
Im also changing from folic acid to 5MTHF and will be adding Readisorb Liposomal Glutathione as soon as they arrive.
Another interesting addition is taking calcium carbonate 1000mg with the digestive enzymes one hour after the two main protein meals of the day. This is meant to aid digestion by helping the enzymes to work in a less acidic environment that is generally too high in the GI tract even though it can be low in the stomach.
As for overall health Ive generally been more worn than previously but just the last few days I seem to have made a bit of a comeback. Time will tell if this lasts, so fingers crossed...
RE: "REBUILDING THE GIT"
In his lectures Dr KDM speaks about the need to rebuild the GIT and how it can take a year or longer. I haven't seen any specific reference to this or to any supplements/pharmaceuticals used for this, from any of his patients who have posted on this thread. perhaps Tony has a reply as he has posted the most useful information so far.
Thanks
In his lectures Dr KDM speaks about the need to rebuild the GIT and how it can take a year or longer. I haven't seen any specific reference to this or to any supplements/pharmaceuticals used for this, from any of his patients who have posted on this thread. perhaps Tony has a reply as he has posted the most useful information so far.
Thanks
Tony
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Hi Ross,
As I understand it the GIT cells take about a year to replenish after they die off, each cell only having a certain life span. So adults have a "new" gut every year or so, children in less time. Supporting the gut by working to restore the bacterial imbalance will hopefully give us a more properly functioning GIT with better immune function, less or normal H2S production etc.
KDM's approach is antibiotics, antivirals, probiotics etc depending on the individuals test results.
As I understand it the GIT cells take about a year to replenish after they die off, each cell only having a certain life span. So adults have a "new" gut every year or so, children in less time. Supporting the gut by working to restore the bacterial imbalance will hopefully give us a more properly functioning GIT with better immune function, less or normal H2S production etc.
KDM's approach is antibiotics, antivirals, probiotics etc depending on the individuals test results.
Thanks for the reply Tony,
So I guess he does not reccomend any specific supplements like glutamine, etc., which help to " heal" the gut. Am I correct in asuming that he identifies the bacteria that need to be eliminated(antibiotics, etc.) and replenished (the probiotic good guys) , by testing and then once this is done, just allowing the GIT to repair itself without any additional intervention?
Another question that I have is regarding heavy metals. Dr KDM regards heavy metals as being a big player in our dysfunction. If identified as having high levels of heavy metals, does he use specific chelators or does he just reccommend the Liposomal glutathione to boost the body's own ability to chelate? I appreciate that you may or may not have the answers to these questions, depending on what your particular findings were.
Also, do you know what his position is with regard to Vitamin D3? Cheney says that its toxic for us, but this opposes all the current thinking and research.
re: your last post "Another interesting addition is taking calcium carbonate 1000mg with the digestive enzymes one hour after the two main protein meals of the day. This is meant to aid digestion by helping the enzymes to work in a less acidic environment that is generally too high in the GI tract even though it can be low in the stomach"
I was perusing Dr Sarah Myhills website, and she recommends something similar if your pancreas is not functioning too well. Tha pancreas enzymes change the pH to alkaline, so if it is dysfunctional you have an acid pH in the GIT post stomach, and that is not good. She recommends magnesium carbonate.
Cheers,
Ross
So I guess he does not reccomend any specific supplements like glutamine, etc., which help to " heal" the gut. Am I correct in asuming that he identifies the bacteria that need to be eliminated(antibiotics, etc.) and replenished (the probiotic good guys) , by testing and then once this is done, just allowing the GIT to repair itself without any additional intervention?
Another question that I have is regarding heavy metals. Dr KDM regards heavy metals as being a big player in our dysfunction. If identified as having high levels of heavy metals, does he use specific chelators or does he just reccommend the Liposomal glutathione to boost the body's own ability to chelate? I appreciate that you may or may not have the answers to these questions, depending on what your particular findings were.
Also, do you know what his position is with regard to Vitamin D3? Cheney says that its toxic for us, but this opposes all the current thinking and research.
re: your last post "Another interesting addition is taking calcium carbonate 1000mg with the digestive enzymes one hour after the two main protein meals of the day. This is meant to aid digestion by helping the enzymes to work in a less acidic environment that is generally too high in the GI tract even though it can be low in the stomach"
I was perusing Dr Sarah Myhills website, and she recommends something similar if your pancreas is not functioning too well. Tha pancreas enzymes change the pH to alkaline, so if it is dysfunctional you have an acid pH in the GIT post stomach, and that is not good. She recommends magnesium carbonate.
Cheers,
Ross
Tony
Still working on it all..
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Hi Ross,
KDM recommends enteric coated l-glutamine for some. In my case KDM recommended 100mg zinc orotate, one month on, two months off. So he does use other additional things. I'm also taking chlorella which is a mild chelator from what I've read but back in '07 KDM was also using other things and maybe still does? Worth a read, that link...
As to his views of D3, I've no idea! Glad you appreciate what I may and may not know...mostly the latter!...
Cheers...
KDM recommends enteric coated l-glutamine for some. In my case KDM recommended 100mg zinc orotate, one month on, two months off. So he does use other additional things. I'm also taking chlorella which is a mild chelator from what I've read but back in '07 KDM was also using other things and maybe still does? Worth a read, that link...
As to his views of D3, I've no idea! Glad you appreciate what I may and may not know...mostly the latter!...
Cheers...
I will post when I recover from the two trips to Florida, one for consutation with Dr. Klimasand then for treatment plan. I am very encouraged. I was so up when we got home yesterday that I did not sleep and never did go back and try. When I am up liike this I have to wait to wear down.
Sunday
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While I know glutamine works a treat for some of us, I also know that others of us get sent down the chute by taking it, because it can mess up our already messed-up methylation even more. Just something to be aware of. Glutamine precursors, too, like NAC.
RustyJ
Contaminated Cell Line 'RustyJ'
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Thanks Jody,
I've already added betaine HCL from this appt. It's meant to break down protein so I can then absorb it better. With a little luck I'll regain some weight...
Hi Tony. I have lost weight recently. Have trouble keeping it on. Could you tell me what dosage, brand etc betaine HCL you are on.
Edit. Oops, I didn't realise this thread was so old. Its very interesting. Thanks for the hard work. Anyway, are you still taking the betaine? Did it work?
Tony
Still working on it all..
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Hi Rusty,
I'm taking one 650mg capsule with the main protein meal per day. I just buy from iherb.com, either Dr's Best or Natrol brands. Yep, still taking it many months on. As an optimist I'd say I've gained half a kilo, maybe, on some days...so nothing noteworthy unfortunately. But my gut is feeling a little better overall lately so I'm hoping that's a good sign of things to come...
It's really easy to post as things happen for me. Trying to remember and writing long posts isn't the way to go. I wish there were more patients who would explain their version of ME/CFS and what treatment they are on. That way others who are very similar might find it more helpful. Off my soapbox now, cheers!
I'm taking one 650mg capsule with the main protein meal per day. I just buy from iherb.com, either Dr's Best or Natrol brands. Yep, still taking it many months on. As an optimist I'd say I've gained half a kilo, maybe, on some days...so nothing noteworthy unfortunately. But my gut is feeling a little better overall lately so I'm hoping that's a good sign of things to come...
It's really easy to post as things happen for me. Trying to remember and writing long posts isn't the way to go. I wish there were more patients who would explain their version of ME/CFS and what treatment they are on. That way others who are very similar might find it more helpful. Off my soapbox now, cheers!
RustyJ
Contaminated Cell Line 'RustyJ'
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Hi Rusty,
I'm taking one 650mg capsule with the main protein meal per day. I just buy from iherb.com, either Dr's Best or Natrol brands. Yep, still taking it many months on. As an optimist I'd say I've gained half a kilo, maybe, on some days...so nothing noteworthy unfortunately. But my gut is feeling a little better overall lately so I'm hoping that's a good sign of things to come...
It's really easy to post as things happen for me. Trying to remember and writing long posts isn't the way to go. I wish there were more patients who would explain their version of ME/CFS and what treatment they are on. That way others who are very similar might find it more helpful. Off my soapbox now, cheers!
Thanks Tony. I think quite a few people have detailed their treatment. I have. It's just that the threads are scattered all over the place. Don't forget for every positive comment you get there are hundreds of others who might have got something out of what you said without making any comment. Also with your treatment, even if it doesn't look like being the answer, just doing something helps you keep on an even keel. I know that's sounds like a platitude, but it works for me. Every inch is a victory.
Tony
Still working on it all..
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Sure, I get that this thread has almost 7,000 views and I've had a few pm's about different things. I get what you're saying about doing something about it all...I'm wired to keep striving. I've found an excellent doc and also another now in KDM. I'm pretty stable and lately I feel a little improvement, so maybe things are on the up...
"Treatments I'm trying" type posts I don't find very useful. I may be quite wrong here as I don't read every post on the forum, but we need to start with what the individuals ME/CFS looks like. Some have high viral titers, some gut dysfuntion, many both etc, etc, etc. That's where I see the importance, detailing the illness first and the treatments next. If I just state that I tried X and it worked it doesn't mean much.
Cheers!
"Treatments I'm trying" type posts I don't find very useful. I may be quite wrong here as I don't read every post on the forum, but we need to start with what the individuals ME/CFS looks like. Some have high viral titers, some gut dysfuntion, many both etc, etc, etc. That's where I see the importance, detailing the illness first and the treatments next. If I just state that I tried X and it worked it doesn't mean much.
Cheers!
Tony
Still working on it all..
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Last appt with the docs was in mid September.
After 8 months on Nexavir daily Im now injecting 2 ml every second day. It maybe doing a little. My sleep has generally been a bit worse, though lately its getting back to whats more normal. This past week has been a much better one sleep wise with better, consistent, non waking sleep. Good sleep makes a big difference in energy and general well being for me as Im sure it does for most.
I have a better gut, feeling more normal, noticing my gut less, which has continued for a few months now. Cognition is a little better, a bit more consistent. Compared to this time last year I have a bit more mental energy, things arent quite as draining as before. Watching a football game on tv and joining in with the banter during the broadcast is easier to handle. (Our Aussie Rules finals were on recently.)
Ive not been able to increase any other physical things, like walking or housework. Im still pretty much the same there.
I tried the glutathione, Readisorb and dont tolerate it very well. It makes me feel more worn out. Three unsuccessful attempts, the first for well over a week and the others for several days or more were enough trial for me, even at 1/3 of the dose. So Im done with that and the NAC.
D-ribose did give me a small boost the first time but not much after that. I use it occasionally now. It seems to help a little with recovery but its hard to tell if its the ribose or just me.
So Im now back on my favourite a/b, azithromycin and after just a few days I notice it helps with the chlam pneumonia, my lungs feel clearer.
The plan is two weeks of azithro and then onto the VSL#3 probiotics for two weeks, a few days of another a/b, back to VSL then another 2 weeks of azithro and back to VSL again. Thatll take me over the next 3 months.
The extra weariness I felt earlier this year seems to have passed. Time will tell...
After 8 months on Nexavir daily Im now injecting 2 ml every second day. It maybe doing a little. My sleep has generally been a bit worse, though lately its getting back to whats more normal. This past week has been a much better one sleep wise with better, consistent, non waking sleep. Good sleep makes a big difference in energy and general well being for me as Im sure it does for most.
I have a better gut, feeling more normal, noticing my gut less, which has continued for a few months now. Cognition is a little better, a bit more consistent. Compared to this time last year I have a bit more mental energy, things arent quite as draining as before. Watching a football game on tv and joining in with the banter during the broadcast is easier to handle. (Our Aussie Rules finals were on recently.)
Ive not been able to increase any other physical things, like walking or housework. Im still pretty much the same there.
I tried the glutathione, Readisorb and dont tolerate it very well. It makes me feel more worn out. Three unsuccessful attempts, the first for well over a week and the others for several days or more were enough trial for me, even at 1/3 of the dose. So Im done with that and the NAC.
D-ribose did give me a small boost the first time but not much after that. I use it occasionally now. It seems to help a little with recovery but its hard to tell if its the ribose or just me.
So Im now back on my favourite a/b, azithromycin and after just a few days I notice it helps with the chlam pneumonia, my lungs feel clearer.
The plan is two weeks of azithro and then onto the VSL#3 probiotics for two weeks, a few days of another a/b, back to VSL then another 2 weeks of azithro and back to VSL again. Thatll take me over the next 3 months.
The extra weariness I felt earlier this year seems to have passed. Time will tell...
Tony
Still working on it all..
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Just after my last post I woke up one morning and felt something different...physical energy! It put a smile on my dial for sure... It was the best I've felt in about 2 years. So I mowed the (very small) backyard. It'd grown to over a metre high in parts...
Of course I overdid it with the enthusiasm energy brings...couldn't contain it. I had PEM the next few days but I wasn't as shattered as I've been in the past. That one day of energy is partly lasting in that I have a bit more physical energy to go with the cognitive improvement. Not as good as the first day but I do feel generally better so long as I get good consistent sleep and pace myself better than the lawnmowing day.
Hopefully with a return to the better management (who let that other fool run my life for a day?) things will continue on the up...
It was the best I've felt in about 2 years. So I mowed the (very small) backyard. It'd grown to over a metre high in parts...Of course I overdid it with the enthusiasm energy brings...couldn't contain it. I had PEM the next few days but I wasn't as shattered as I've been in the past. That one day of energy is partly lasting in that I have a bit more physical energy to go with the cognitive improvement. Not as good as the first day but I do feel generally better so long as I get good consistent sleep and pace myself better than the lawnmowing day.
Hopefully with a return to the better management (who let that other fool run my life for a day?) things will continue on the up...
Tony how do you get on with the VSL#3 probiotic? Do you have dairy/wheat intolerances? Because KDM has given me a treatment plan for my daughter which includes VSL#3 but according to the Biotek food panel she has v high intolerances to all dairy. I am assuming this is ok to take but wonder if there will be some reaction.
Tony
Still working on it all..
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I've found the VSL#3 fine. I don't do well with very much cow's milk so I don't drink it. Milk showed up positive on a food testing panel. Too much fructose is a problem for me too so I very rarely eat wheat. I seem to be ok with lactose after a tolerance breath test, so I guess it's the casein protein in dairy that I don't do well with. Whatever it is, I do better without dairy foods.
I hope your daughter finds it fine too....
I hope your daughter finds it fine too....
Thanks Tony, she has taken the VSL for almost a week now and apart from feeling abit nauseus the first evening she has been OK with them.
Moving on to the vitamins KDM recommends - anyone taking the Daily Health Support from Protea Nutraceuticals? I got these delivered yesterday but wow that's one helluva lot of magnesium!! Anyone got any experience of taking these?
Moving on to the vitamins KDM recommends - anyone taking the Daily Health Support from Protea Nutraceuticals? I got these delivered yesterday but wow that's one helluva lot of magnesium!! Anyone got any experience of taking these?