Had a SKYPE consultation with Dr Paul Cheney last night

[Jesse2233]

To this day my biggest regret in my life is pursuing Methylation therapy. I made some stupid decisions tried larger doses and took potassium as protocols on this forum recommend and it placed me in a position where I am significantly worse off. I've developed dysphagia, gastroparesis, histamine issues, stiff tingling muscles, food sensitivities, and my activity scale went from an 8 to a 5/6 on the activity scale. Probably other things I'm missing too.

It's easy with CFS to act out of desperation and read a case study or two on the internet and hope it works for you but there are risks. I think the Methylation forum should have a stickied thread of negative experiences so people take more of a proceed with caution approach. It's very easy to be skewed by the vocal opinion of others on the pro side there.

What were the larger doses that messed you up?

 

[Kati]

To this day my biggest regret in my life is pursuing Methylation therapy. I made some stupid decisions tried larger doses and took potassium as protocols on this forum recommend and it placed me in a position where I am significantly worse off. I've developed dysphagia, gastroparesis, histamine issues, stiff tingling muscles, food sensitivities, and my activity scale went from an 8 to a 5/6 on the activity scale. Probably other things I'm missing too.

It's easy with CFS to act out of desperation and read a case study or two on the internet and hope it works for you but there are risks. I think the Methylation forum should have a stickied thread of negative experiences so people take more of a proceed with caution approach. It's very easy to be skewed by the vocal opinion of others on the pro side there.

Indeed, supplementation with potassium can be quite dangerous if non supervised by a physician. And hypokalemia may quickly become hyperkalemia. If someone doesn't get regular blood work and supplements because of a blood test from 3months ago, there are risks of doing damage.

I am not in a psoition to judge whether or not all of your problems stem from doing the methylation protocol, @lakesarecool but I am very sorry it happened to you.

 

[Oberon]

What were the larger doses that messed you up?

You can ready my story here: http://forums.phoenixrising.me/inde...g-legs-increased-heart-rate-depression.45167/

I think looking back it was possibly a build up over time that led to my downward cascade but I'm really not sure. I was too stubborn and desperate at the time to realize these supplements may have been hurting me over time rather than helping because of the various positive experiences in the forum. The therapy may still be worth trying and has clearly helped some others. I just think there needs to be a much bigger proceed with caution as these are not harmless supplements by any means.

Indeed, supplementation with potassium can be quite dangerous if non supervised by a physician. And hypokalemia may quickly become hyperkalemia. If someone doesn't get regular blood work and supplements because of a blood test from 3months ago, there are risks of doing damage.

I am not in a psoition to judge whether or not all of your problems stem from doing the methylation protocol, @lakesarecool but I am very sorry it happened to you.

Thank you . I think I may have taken the thread a bit off topic and too focused on my issues which was not my intention. I only wanted to reinforce that it's very easy with CFS to get caught up in potentially harmful therapies that have more of a basis in pseudoscience than science.

 

[keenly]

To this day my biggest regret in my life is pursuing Methylation therapy. I made some stupid decisions tried larger doses and took potassium as protocols on this forum recommend and it placed me in a position where I am significantly worse off. I've developed dysphagia, gastroparesis, histamine issues, stiff tingling muscles, food sensitivities, and my activity scale went from an 8 to a 5/6 on the activity scale. Probably other things I'm missing too.

It's easy with CFS to act out of desperation and read a case study or two on the internet and hope it works for you but there are risks. I think the Methylation forum should have a stickied thread of negative experiences so people take more of a proceed with caution approach. It's very easy to be skewed by the vocal opinion of others on the pro side there.

I can relate.

I have all the symptoms you report there. I too would advise go slow!!!!!!!!!

 

[PatJ]

Indeed, supplementation with potassium can be quite dangerous if non supervised by a physician. And hypokalemia may quickly become hyperkalemia. If someone doesn't get regular blood work and supplements because of a blood test from 3months ago, there are risks of doing damage.

In general this is good advice but it doesn't apply to someone who has a severe daily potassium demand due to high doses of methylation supps (which is one of the reasons why these high doses can be dangerous if not managed well). When I was doing Freddd's treatment I needed 3.5 grams of supplemental potassium per day in divided doses. Blood work would have been useless because my potassium would drop severely within hours and I needed supplemental potassium to prevent or resolve the symptoms. Ignoring the symptoms and waiting to see a doctor in this unusual situation could have been fatal because, from what i have read, most doctors have never encountered such a strange and ongoing demand for potassium.

People who take high dose methylation supplements and respond with increased potassium demand need to be aware of the danger. I think this is one reason why RickVanK advised lower doses in his treatment.

 

[Helen]

People who take high dose methylation supplements and respond with increased potassium demand need to be aware of the danger. I think this is one reason why RickVank advised lower doses in his treatment.

Yes, Rich told so as they had good results with low doses of methylation supplements in the clinical trial they made (Dr. Neil Nathan and him assisting). Rich was critical to Freddd´s protocol to anyone but those that possibly had the same enzyme defect as Freddd has.

 

[arewenearlythereyet]

I think reading through the methylation threads it says go low and slow all over the place, so much so that I was absolutely paranoid about it. Most of the cases I've seen with bad reactions seems to be when people go a bit heavy handed with the supplements (go high and fast).

Having said All that we are all different and it's not a cure, just an easing of symptoms for me. It has been the best thing I've tried though.

 

[CCC]

We spent five weeks reading through Freddd's mega methylation thread. It was full of negative experiences and I copied them all into evernote so I could find them if 'it' happened to us.

 

[Sushi]

This thread has wandered off-topic. The title is:

"Had a SKYPE consultation with Dr Paul Cheney last night."

Please take discussions of methylation to the methylation section of the forum and get back to the topic of the opening post. Thanks.

 

[dr. Arf]

Could it be that making the sustained effort had a placating effect, i.e. similar to placebo effect, that the trial participants would have had an 'upturn' irrespective of methylation; or substitute another regimen, say Dr, Coimbra's Vit D3 protocol?

I spent a lot of time and expense with both processes, in specific reading 'Dr. Amy's' questionable books and web routines but succeeded in affecting little but abating the focus on symptoms while preoccupied with the process. While symptoms ultimately returned, that is not to say there may have been some health benefits to 'M' and
the Vitamin D3 protocol... .

IMO, methylation is just another fad that got a few people engaged then withered away, like so many other 'cure de jours'. Even capsules ordered from the guru's
store ultimately hardened and blackened with spots! ...But hey, no ticky, no washy; you gotta try... .

@Stretched:
I am interested in the fact that you followed Coimbra Protocol.
Is it possible to extend on this?
I mean did you Follow the treatment with a COIMBRA PROTOCOL doctor?

Or did you experiment yourself?
And at what doses ?
And for how long?
- As I understand it normally take some time for effects to take off - that is with other auto immune diseases...

 

[knackers323]

Anyone heard any reports on this nanoVi thing?

 

[minimus]

Cheney has asked his former patients to buy a pulse oximeter in order record their oxygen saturation levels throughout the night while they are asleep. I don't feel like going into too much background, but he was finding from these pulse oximeter recordings that most CFS patients have multiple protracted periods of oxygen desaturation, sometimes severe (<60%), while asleep. A minute or two after these oxygen desaturation episodes begin, his patients' pulse rates spike, sometimes to very high levels.

His thesis is that the spike in pulse rate is caused by the release of adrenaline (or more generally a sharp sudden rise in sympathetic tone) that is a physiological attempt to raise oxygen flow to the brain. As this autonomic response occurs, the adrenaline release disrupts deep sleep. Hence, sleep quality is terrible and CFS patients wake up feeling unrefreshed/awful.

He is recommending low-dose oxygen at night, at most about 1 liter per minute, through an oxygen concentrator. Some patients say they are sleeping better than before and experiencing functional/clinical improvement starting about a month after beginning on PM oxygen. The amount of oxygen depends on the pulse oximetry report.

Not all CFS patients have this problem as severely as others. That is why the pulse oximeter is important. In other words, don't run out and try to buy or rent a concentrator unless you have an abnormal oximetry report. In any case, you can't buy an oxygen concentrator without a prescription.

Other CFS doctors, including KDM, have used supplemental oxygen in their practices. However, Cheney and KDM believe excessive oxygen is bad for you because it can increase oxidation. If the nighttime pulse oximetry report is normal, the supplemental oxygen is contraindicated.

He is not recommending the Nano-Vi at this time. He mentioned it at one point as a possible future treatment, but then bailed on it when one patient's echocardiography showed a slight decline in heart function after using the Nano-Vi machine. He noted that a few patients responded well to Nano-Vi when he tested how their heart function changed while on it. A few patients said it made them feel well again -- as in, cured. But this was not the case with everyone, so Nano-Vi is not part of his protocol,

 

[knackers323]

is this essentially the same thing as C-PAP treatment for sleep apnea or is it different somehow?

 

[Sushi]

he was finding from these pulse oximeter recordings that most CFS patients have multiple protracted periods of oxygen desaturation, sometimes severe (<60%), while asleep. A minute or two after these oxygen desaturation episodes begin, his patients' pulse rates spike, sometimes to very high levels.

Another option is to get a doc to prescribe a home sleep study. I just had a very high tech one done with very comfortable equipment. It correlated O2 sats with pulse, second by second, recorded all partial awakening, awakenings and a bunch of other data.

I was surprised that I had no desaturations and my pulse was steady, though I did have quite a few partial awakenings. These home sleep study devices will yeild more sophisticated data than the pulse oximeter. I am in the US and insurance paid for it and for the interpretation by a sleep specialist.

 

[minimus]

By the way, I myself have started supplemental oxygen at night. I have not noticed any major changes in how I feel, but have only used the concentrator for 5 nights so far.

 

[minimus]

Sushi, yes a home sleep study will give much more robust data than a pulse oximeter.

Funny that you did not desaturate. At least you don't have apnea.

I recently saw the head of the pulmonology dept. at Weill-Cornell about another health issue (these other health issues pile up the older I get and the more years - almost 19 - I have had ME. Those "downstream" health problems are viewed as real and serious, but CFS/ME is still viewed by the same doctors with bafflement and is totally ignored.) He said that everyone has a lower level of O2 saturation at night. It is not really abnormal unless it plunges and causes sleep interruptions, I guess.

 

[Forbin]

Cheney has asked his former patients to buy a pulse oximeter in order record their oxygen saturation levels throughout the night while they are asleep. I don't feel like going into too much background, but he was finding from these pulse oximeter recordings that most CFS patients have multiple protracted periods of oxygen desaturation, sometimes severe (<60%), while asleep. A minute or two after these oxygen desaturation episodes begin, his patients' pulse rates spike, sometimes to very high levels.

Some years ago, I thought I might be suffering from sleep apnea. I decided to videotape myself sleeping to see if I was snoring or gasping for breath. It turned out that something else was going on. Basically, the depth of my breathing was following this rhythm:

​

At the peaks, I was breathing unusually deeply. Then, I would breathe less and less deeply until I stopped breathing altogether for 30-40 seconds at a time. This pattern is called Cheyne-Stokes Respiration when it happens when both awake and during sleep. When it occurs only during sleep, it is called central sleep apnea syndrome (CSAS). It is not the same as obstructive sleep apnea, where the cause is essentially mechanical.

Central sleep apnea syndrome is apparently caused by a malfunction in the respiratory centers of the brain that judge the level of carbon dioxide in the blood.

The neurological feedback mechanism that monitors blood levels of carbon dioxide and in turn stimulates respiration fails to react quickly enough to maintain an even respiratory rate, allowing the entire respiratory system to cycle between apnea and hyperpnea, even for a brief time following an awakening during a breathing pause.
https://en.wikipedia.org/wiki/Central_sleep_apnea

I had a sleep test done, which was not of much value since I only managed to sleep a couple of hours. A few instances of apnea were noted, but were not thought significant enough to treat. I do wonder, though, if this kind of neurological feedback malfunction could be a consequence of ME/CFS.

[FWIW, in my case I found that I got much better sleep after I started to use "nasal strips," possibly due to a deviated septum and/or the fact that one my nostrils is somewhat constricted compared to the other.]

 

[keenly]

Cheney has asked his former patients to buy a pulse oximeter in order record their oxygen saturation levels throughout the night while they are asleep. I don't feel like going into too much background, but he was finding from these pulse oximeter recordings that most CFS patients have multiple protracted periods of oxygen desaturation, sometimes severe (<60%), while asleep. A minute or two after these oxygen desaturation episodes begin, his patients' pulse rates spike, sometimes to very high levels.

His thesis is that the spike in pulse rate is caused by the release of adrenaline (or more generally a sharp sudden rise in sympathetic tone) that is a physiological attempt to raise oxygen flow to the brain. As this autonomic response occurs, the adrenaline release disrupts deep sleep. Hence, sleep quality is terrible and CFS patients wake up feeling unrefreshed/awful.

He is recommending low-dose oxygen at night, at most about 1 liter per minute, through an oxygen concentrator. Some patients say they are sleeping better than before and experiencing functional/clinical improvement starting about a month after beginning on PM oxygen. The amount of oxygen depends on the pulse oximetry report.

Not all CFS patients have this problem as severely as others. That is why the pulse oximeter is important. In other words, don't run out and try to buy or rent a concentrator unless you have an abnormal oximetry report. In any case, you can't buy an oxygen concentrator without a prescription.

Other CFS doctors, including KDM, have used supplemental oxygen in their practices. However, Cheney and KDM believe excessive oxygen is bad for you because it can increase oxidation. If the nighttime pulse oximetry report is normal, the supplemental oxygen is contraindicated.

He is not recommending the Nano-Vi at this time. He mentioned it at one point as a possible future treatment, but then bailed on it when one patient's echocardiography showed a slight decline in heart function after using the Nano-Vi machine. He noted that a few patients responded well to Nano-Vi when he tested how their heart function changed while on it. A few patients said it made them feel well again -- as in, cured. But this was not the case with everyone, so Nano-Vi is not part of his protocol,

Yes but too little oxygen is just as bad.

In the past Dr Cheney tested patients on 4 liter per minute, he found that was too much. He says 0.5 to 2lpm can be very beneficial in restoring sleep.

 

[Sushi]

@minimus Yes, I did have lower O2 levels while sleeping but still in the normal range expected during sleep--not desalts.

 

[Little Bluestem]

He is recommending low-dose oxygen at night, at most about 1 liter per minute, through an oxygen concentrator.

The type of oxygen concentrator that I am familiar with makes a lot of noise. That would interfere with sleep for me. Are there quiet ones?