Any Dr Cheney patients? Does he still stand by Clonazepam (low dose) for excitotxicty

[Nielk]

Hi Rich,

Thank you for your reply to me.
I have not been able to get a methylation panel done because I live in the great city of NY where it is illegal to order this test.

Being a patient of Dr. Enlander, I have been in the past on his protocol of weekly kutapressin shots including B12, folate, glutathione, I also took his immunopro and immunoplus daily. All this for years with no results. I know that he believes in the methylation block as you do but his protocol is different than yours. He supplies glutathione and folic acid which from what I understand is not recommended on your protocol. So, this is a long way to say that no, I have not tried your protocol beyond the B12 and folate and it could be that the glutathione and folic acid was working against me - I don't know. I don't know why his protocol (being that he understands the methylation problems) does not match yours?
This whole subject has me very comfused - especially since I can't even test to really see if I have a problem with this.

Thanks for your concern,

 

[hixxy]

neilk: What is with this restriction on pathology for people in NY? Does this apply to other things as well? What are they trying to achieve? Protect people from themselves?

rich: I had a 1 1/2 weeks of 100% complete remission nearly 3 years ago. Is it possible that methylation may not actually be "blocked", but "suppressed"? This remission happened 2 days after completion of a course of antibiotics (the antibiotics were horrendous, so 2 days must have been needed to recover from them). I wouldn't have thought that even if it is suppressed, it would recover so quickly.

 

[Googsta]

Anyone, who would do any research on this will see tons of forums on line for people who are addicted to Klonopin and can't get off. Some people die from withdrawal. I don't know how people here don't realize the dangers involved here. I also think (can't be sure) that my level of pain is so increased and unbearable because of the Klonopin withdrawal state I'm in - just by not increasing the dosage.

Am I the only one with this problem?

Hi Nielk, there is a vast difference betwen having a drug dependance & a drug addiction. Don't be so hard on yourself.
You are quite correct regarding this drug, MANY people have long-term problems with it, M.E or not. CrazyDrugs.com is a great place to check out on tapering tips, they also have forums where you can find support from those having the same problems or have been through it & made it out the other side.

Cheney's opinion correct me if I'm wrong, was that if you had side effects tapering off it meant your body still needed it. I'm not sure of his reasoning there maybe someone else could explain.

Unfortunately the biggest mistake is patients increase the dose when the small dose loses it's effectiveness. The biggest mistake doctors make is not warning patients about the possible side effects & dependancy problems, too many doctors do not acknowledge that these drugs have tapering issues. Then patients are left to try tapering off on their own with no support, it's downright criminal IMO.


I appreciate that many people have found this drug life-changing in the positive sense. I am so glad that has been the case. But for me personally, I think the risks are too high. There are ALWAYS other options.

 

[richvank]

Hi, NeilK.

Well, I like Dr. Enlander very much, and we do agree on the value of methylation treatment for ME/CFS. However, as you noted, our protocols are somewhat different. He developed his own protocol more or less by trial and error, adding things over time that seemed to help. And as I'm sure you know, he likes to compound the supplements together, probably in an effort to make things simpler for his patients.

The history of the protocol I have suggested is different, in that I extracted it from Dr. Amy Yasko's full treatment program, used primarily for treating autism. Although Dr. Yasko has lately been combining supplements together into her own formulations to try to simplify the treatment for patients, in the past she used a lot of separate supplements, and that's when I extracted my suggested protocol.

Now, when supplements are combined together into a compounded supplement, there is an issue of whether any of them are made by patented processes. If so, a license must be obtained to do this. That may cost money and take time, or it might not even be allowed by the patent holder.

As you probably know, I favor use of methylfolate as the folate form, because it is the direct type needed by the methionine synthase enzyme, which is blocked in ME/CFS. If you use that form, there is no problem with having to do conversions, which some people can't do very well, because of genetic polymorphisms. In the past, there was only one source of the right type of methylfolate (L5-methyltetrahydrofolate), and Merck Germany owned the patent for the process to make it. I am not privy to their licensing policy, but I suspect that this was an issue. There is no licensing problem when combining folic acid into a compounded supplement, and I suspect that the same is true of folinic acid nowadays, but not so for L5-methyltetrahydrofolate. There are some companies licensed by Merck Germany to sell this product, and some that are allowed to compound it with other supplements. Metagenics is one of them, and PamLab is another. Initially, Dr. Yasko just used the Metagenics products for this type of folate, but more recently, another player entered the field, which is the Gnosis company in Austria. They now have their own patented process, and they produce Quatrefolic, which is 5L-methyltetrahydrofolate bound to glucosamine. The Merck version is bound to calcium. So Dr. Yasko now supplies a liquid form of Quatrefolic called MethylMate B. I presume she was able to reach agreement with Gnosis. Allergy Research Group is now supplying the Gnosis form as well, and it is part of Marty Pall's revised protocol.

In the past, I have tried to urge Dr. Enlander to switch to methylfolate, but have been unsuccessful. Either he was not convinced of the importance of this, or there was this problem of compounding it. I'm not sure. But now you have the history. Dr. Enlander is his own man, and he makes his own choices. This is true of all the physicians I have encountered, by the way. I do what I can to influence their choices, but the choices are theirs. They have to take responsibility for what they do, and they do not just accept what I tell them as the "gospel."

Glutathione is another issue. Some people do well with it, and some do not tolerate it. I have left it out of the basic protocol I have suggested, though I do think it might be of value for some people. But oral glutathione is mostly broken down in the gut, and injected glutathione doesn't make it into most of the cells. I think that liposomal or acetyl glutathione are needed to get it into the cells in general.

And yes, it is also a shame that people in New York state cannot send their samples to Health Diagnostics from their state. I know that some visit doctors in adjoining states to order the methylation pathways panel, but this is not a good solution for those who are more or less housebound or even moreso, those who are bedbound.

I don't know if Dr. Enlander would be amenable to your switching to the protocol I have suggested, but it might be something you could discuss with him. I know that many of his patients do make progress on his protocol, but I'm sure he would like to see others progress as well, and perhaps he would entertain trying a slightly different protocol in your case. I do hate to see you continuing to suffer, when perhaps a change in protocol could help you. Of course, I can't guarantee that it would, because each person's case is somewhat unique, but I think it might be worth a try.

Best regards,

Rich

 

[hixxy]

Is it possible to just have an interstate practitioner sign off on the pathology request? There's always going to be ways around such silly restrictions.

 

[richvank]

neilk: What is with this restriction on pathology for people in NY? Does this apply to other things as well? What are they trying to achieve? Protect people from themselves?

rich: I had a 1 1/2 weeks of 100% complete remission nearly 3 years ago. Is it possible that methylation may not actually be "blocked", but "suppressed"? This remission happened 2 days after completion of a course of antibiotics (the antibiotics were horrendous, so 2 days must have been needed to recover from them). I wouldn't have thought that even if it is suppressed, it would recover so quickly.

Hi, hixxy.

If my hypothesis is correct, something that could cause glutathione to rise a lot inside the cells might be able to overcome the functional B12 deficiency, and if enough folate was also in the cells, that could lift the methylation block or suppression or whatever we want to call it. Perhaps that happened in your case. That may also be what happens in the successful Retuximab cases. We were never able to make this happen by direct boosting of glutathione, but may if whatever is holding it down can be removed, methylation could come back up.

Best regards,

Rich

 

[richvank]

Is it possible to just have an interstate practitioner sign off on the pathology request? There's always going to be ways around such silly restrictions.

Hi, hixxy.

The samples have to be mailed from an address outside New York state, and the report also has to be mailed to an address outside New York state. The lab does not have certification by the state, and New York state requires labs that run samples from their state to be certified by them. This involves paying a fee and being subject to additional inspections and demands that are sometimes unreasonable, at the whim of the inspectors. Some lab managers just decide that the additional business they would get is just not worth it. Apparently New York state instituted this certification requirement some years ago in order to raise money to support state laboratories, without having to use tax money to do so. It was probably easier to get it through the legislature than a tax increase. It does make it difficult for citizens of the state to get some unconventional lab tests run.

Best regards,

Rich

 

[Rockt]

Am I the only one with this problem?


You're not alone, NeilK. I began slowly tapering Clonazepam from .5mgs nightly in March '11. It's been a nightmare - suicidal thoughts, uncontrollable temper, searing headaches, etc., etc. However, I was able to manage and in Jan. I was able to switch to Lorazepam. This proved way more difficult than anticipated, but I'm now taking .0625mg Lorazepam at 57 hours between doses (increasing 3 hours every cycle so next dose will be in 60 hours, next in 63, etc.), with the goal being that at 96 hours between doses, I'm done, (realistically I may need a mini dose at times farther out than 96 hours, but hopefully it's a non-factor). So (hopefully) 15 months total.

Going to be harder for you starting from a higher dose, but I believe that if you go slow enough you can do it. Got to ease the receptors off. I couldn't have done it (so far - not free yet) without Freddd's help. You've talked to him right? His method works - it's not perfect but it works.

Unfortunately, you pretty much have to forego all the good-intentioned advice, (and I don't mean that sarcastically - I know everyone here means well) because if someone hasn't experieinced the level of dependency you are experiencing, (and not everyone does), they can't possibly understand the incidious nature of this drug. But to some of us it truly is a nightmare.

Talk to Freddd. And if you decide to embark on a very slow taper, try to take the mindset that every day is a step in the right direction. That way, even if it takes a very long time (years?), you're always progressing.

Good luck my friend.

 

[Nielk]

Hi Rockt.

Thank you for your reply. I'm sorry you had such a rough time but, I'm happy that you seem to be almost there.

 

[hixxy]

Is lorazepam an effective alternative to clonozepam? Do you find it controls your symptoms as well?

hixxy

 

[perrier]

Hi Nielk, and Hi Rockt:
I am also a Klonapin sufferer. I am dying to get off this nightmare drug. But I do not sleep and am not strong yet. I wrote to Fred and he said he will help, but he thinks I need to get a bit stronger.

I am furious with the doctors who threw this at me when I was in my early 20s when i got sick. I have been on it for years now. I hate it.

Two years ago I got down to .25mg but couldn't decrease it; and the doctor I saw said I had to keep taking it. Of course, the dose just gets higher. And recently I asked my current doctor what to do because the suicidal ideation is very severe and he said to stop it!!!!! How I pray tell?

My family are thinking of sending me into drug rehab for this addiction. And I am ready to go, just to get off this drug. But do those folks know what they are doing in those centers? If anyone knows of a good one, please let me know.

If anyone knows what to take for sleep whilst tapering, please let me know.

Nielk I know exactly what you are going through.
Kindest regards, Helene

Am I the only one with this problem?


You're not alone, NeilK. I began slowly tapering Clonazepam from .5mgs nightly in March '11. It's been a nightmare - suicidal thoughts, uncontrollable temper, searing headaches, etc., etc. However, I was able to manage and in Jan. I was able to switch to Lorazepam. This proved way more difficult than anticipated, but I'm now taking .0625mg Lorazepam at 57 hours between doses (increasing 3 hours every cycle so next dose will be in 60 hours, next in 63, etc.), with the goal being that at 96 hours between doses, I'm done, (realistically I may need a mini dose at times farther out than 96 hours, but hopefully it's a non-factor). So (hopefully) 15 months total.

Going to be harder for you starting from a higher dose, but I believe that if you go slow enough you can do it. Got to ease the receptors off. I couldn't have done it (so far - not free yet) without Freddd's help. You've talked to him right? His method works - it's not perfect but it works.

Unfortunately, you pretty much have to forego all the good-intentioned advice, (and I don't mean that sarcastically - I know everyone here means well) because if someone hasn't experieinced the level of dependency you are experiencing, (and not everyone does), they can't possibly understand the incidious nature of this drug. But to some of us it truly is a nightmare.

Talk to Freddd. And if you decide to embark on a very slow taper, try to take the mindset that every day is a step in the right direction. That way, even if it takes a very long time (years?), you're always progressing.

Good luck my friend.

 

[hixxy]

What does the drug rehab have to offer as far as controlling the potential dangerous withdrawals that can't be done outside a clinic?

hixxy

 

[perrier]

What does the drug rehab have to offer as far as controlling the potential dangerous withdrawals that can't be done outside a clinic?

hixxy

Hi Hixxy
Look, I don't know what to do. I just want to get off this horrible medication. And I do not sleep adequately, even on it. It was given to me for sleep, and for the excitotoxicity. But what shall I take for sleep as I withdraw from this? This is why I am thinking maybe a hospital setting will be of help. Look, I do not know what to do. It is negligent of the physicians not to warn a person about addiction. In Dr. Teitelbaum"s book, From Fatigued to Fantastic he also says that he has never seen anyone have trouble getting off this pill. And yet, how often have I heard my story repeated.

If I could find something to help me sleep, I could start the taper. But I have gone through all the sleeping aids and they have all died on me.

All that is left is Xyrem, which I saw on Dr. Enlander's site was mentioned in connection to Fibromyalgia. Not that I want this Xyrem either. I have always hated drugs, and never used them in university. And now, I am a drug addict, due to this illness.
Forgive me my distress.
Best wishes, Helene

 

[heapsreal]

Hi Hixxy
Look, I don't know what to do. I just want to get off this horrible medication. And I do not sleep adequately, even on it. It was given to me for sleep, and for the excitotoxicity. But what shall I take for sleep as I withdraw from this? This is why I am thinking maybe a hospital setting will be of help. Look, I do not know what to do. It is negligent of the physicians not to warn a person about addiction. In Dr. Teitelbaum"s book, From Fatigued to Fantastic he also says that he has never seen anyone have trouble getting off this pill. And yet, how often have I heard my story repeated.

If I could find something to help me sleep, I could start the taper. But I have gone through all the sleeping aids and they have all died on me.

All that is left is Xyrem, which I saw on Dr. Enlander's site was mentioned in connection to Fibromyalgia. Not that I want this Xyrem either. I have always hated drugs, and never used them in university. And now, I am a drug addict, due to this illness.
Forgive me my distress.
Best wishes, Helene

look at a low dose combination of a few things for sleep and alternate them regularly. Somethings that arent benzo's that can help for sleep are lyrica, neurontin and seroquel, maybe switch from klono to valium.
I still think many of us have chronic sleep issues that arent going to go back to normal and arent because one has taken benzo's, tolerence to sleep meds i think is an issue and we need to alternate things for sleep so we can keep drug doses low and avoid tolerence.

cheers!!!

 

[taniaaust1]

Is there anyone on this forum who is a Cheney patient?

I have read from an article quoting Cheney that he recommends Klonopin for his patients. He even says that at time of clashes, it's ok to double your dose to get you through it.
He also says that he never had a problem withdrawing patients from Klonopin, once they were cured???????????????????????????????????????????????????????????????????????????

As far as Im aware he says that once a persons neuroexcitability (have I got the the right word he uses?) has settled.. once that's better.. the person can then stop it easily as they arent needing it for those symptoms no more. Those who are still needing it will get those symptoms back as soon as they stop.

So by "cured" that is probably what was being refered to in the quote you wrote eg that part of the ME has settled (not meaning the whole ME is better). Ive seen this explained before.

 

[taniaaust1]

Two years ago I got down to .25mg but couldn't decrease it; and the doctor I saw said I had to keep taking it. Of course, the dose just gets higher.

In Dr. Teitelbaum"s book, From Fatigued to Fantastic he also says that he has never seen anyone have trouble getting off this pill. And yet, how often have I heard my story repeated.

Most of the people who are having issues with the drug, from my observations were taking more then the little dose ones like Cheney used to put people on (I dont know if he still does or not). I was only taking .25 per day (I could of been taking even less then that at one point). Ive no idea how much Dr. Teitelbaum"s recommends for his patients.

I dont know if Ive ever met anyone having issues coming off of it, who's only been on that low dose (if they were taking it for neuroexcitability and that issue is now gone). Like yourself, those I hear about were taking more, (many doctors are too easily throwing it about like candy).

It was never prescribed to me for sleep, just for the neuroexcitabily ME caused for me. (I cant even remember it working for me for sleep, I dont think it did). Once that neuroexcitablity went away, I didnt need anything for it anymore.

Unfortunately as far as things for sleep go, most are addictive or one builds up tollerance too.

best luck with getting off of it.

 

[taniaaust1]

I appreciate that many people have found this drug life-changing in the positive sense. I am so glad that has been the case. But for me personally, I think the risks are too high. There are ALWAYS other options.

Some times. It probably would be great if there isnt one already to have a thread on what drugs calm down neuroexicitability (and protect this system like this drug is supposed to do).

 

[taniaaust1]

Hi, hixxy.

The samples have to be mailed from an address outside New York state, and the report also has to be mailed to an address outside New York state. The lab does not have certification by the state, and New York state requires labs that run samples from their state to be certified by them. This involves paying a fee and being subject to additional inspections and demands that are sometimes unreasonable, at the whim of the inspectors. Some lab managers just decide that the additional business they would get is just not worth it. Apparently New York state instituted this certification requirement some years ago in order to raise money to support state laboratories, without having to use tax money to do so. It was probably easier to get it through the legislature than a tax increase. It does make it difficult for citizens of the state to get some unconventional lab tests run.

Best regards,

Rich

That's terrible

 

[Rockt]

Is lorazepam an effective alternative to clonozepam? Do you find it controls your symptoms as well?

hixxy

The short answer is "no". I was only able to switch to lorazepam after slowly getting down to a very low dose (.036161mg) clonazepam. The switch was made to reduce the total taper time overall - lorazepam has a shorter half-life.

I should mention that at the very low dose of clonazepam I got to, withdrawal was still VERY strong, so I think comments made about "low" dose ("Most of the people who are having issues with the drug, from my observations were taking more then the little dose ones like Cheney used to put people on (I dont know if he still does or not). I was only taking .25 per day (I could of been taking even less then that at one point)") are misleading. I "only" took .5mg. Some people don't experience strong withdrawal, at least not in ways they are aware of; for others, withdrawal from clonazepam feels like a slow, painful death. Those in the former category are probably rolling their eyes thinking "How bad can it be for them? It wasn't difficult for me at all". Those in the latter are nodding and know that I'm not even slightly exaggerating. This is why I made the comment about advice on this issue previously. As well intentioned as everyone is, (and again I know and appreciate the good intent), if you haven't experienced the nightmare of clonazepam's iron-fisted grip, you can't give valuable advice because you can't imagine or understand how difficult (understatement of the year)(and dangerous) the withdrwal is.

 

[Rockt]

Most of the people who are having issues with the drug, from my observations were taking more then the little dose ones like Cheney used to put people on (I dont know if he still does or not). I was only taking .25 per day (I could of been taking even less then that at one point). Ive no idea how much Dr. Teitelbaum"s recommends for his patients.

I dont know if Ive ever met anyone having issues coming off of it, who's only been on that low dose (if they were taking it for neuroexcitability and that issue is now gone). Like yourself, those I hear about were taking more, (many doctors are too easily throwing it about like candy).

It was never prescribed to me for sleep, just for the neuroexcitabily ME caused for me. (I cant even remember it working for me for sleep, I dont think it did). Once that neuroexcitablity went away, I didnt need anything for it anymore.

Unfortunately as far as things for sleep go, most are addictive or one builds up tollerance too.

best luck with getting off of it.

Re the "little" doses Cheney uses:

How can the brain be protected against excitatory neurotoxicity? Klonopin. This long acting benzodiazepine has been Dr. Cheneys most effective drug for CFIDS over the years. He believes that Klonopin and the supplement magnesium may be two of the most important treatments for CFIDS patients because of their neuroprotective qualities. He recommends two or more 0.5 mg tablets of Klonopin at night. Paradoxically, very small doses (usually a quarter to a half a tablet) in the morning and mid-afternoon improve cognitive function and energy. If the daytime dose is low enough, youll experience greater clarity and think better. If the daytime dose is too high, youll become drowsy. Adjust your dose for maximum benefit, taking as much as possible without drowsiness. Adjust the morning dose first, then take the same amount mid-afternoon if needed, then take three to four times the morning dose at bedtime. Dr. Cheney recommends doubling the dose during severe relapses.


At minimum, this is 1.125mg/day - not "little" ( again, I was taking .5mg/day).

Dr. Ashton says, (and my own experience mirrors this exactly), that if you take clonazepam, at any dose, regularly, and do not increase the dose, you will expereince withdrawal. Therefore, with Cheney's "advice" in mind most people would likely increase the dose to combat what they think is neurotoxicity, when it is really withdrawal, (though since clonazepam withdrawal can be so severe, I don't doubt that it and neurotoxity - cell death - could be one and the same. How Dr. Cheney knows that cell death is occurring I don't know, but then I'm not a super-genius like him - yes, now I'm being sarcastic - I think his opinion on the use of this drug is absolutely ridiculous.