swedeboy/desertlass (klonopin)

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Apr 17, 2007.

  1. Slayadragon

    Slayadragon New Member

    I started writing to you again on the methylation thread, but then thought it better to move non-related stuff to another location.

    I've been on Klonopin (1-1.5 mg per night) for about eight years.

    I've never had to go up on the dosage to get the same effect.

    I've never felt any desire to use it during the day.

    i've suffered no increased need for it over time. I can sleep without it, but it's not restful sleep. This is as things were before I started it.

    I haven't suffered any addiction at all, it seems. That is not the case for all CFS sufferers, of course. But it's not as scary a drug as a lot of doctors seem to think, for many of us.

    (Of course, now I don't seem to be able to sleep well without a combination of human growth hormone, klonopin and melatonin, but that's the fault of the antiviral. My doctor said hopefully after I'm done, I won't need any sleep medication at all. We shall see.....)

    Now, my husband does not take benzos for his anxiety because he is afraid of addiction and felt addicted the one time he took them, but he has an addictive personality. The one time he tried pot--legally, in Amsterdam--he honestly wanted to sell everything he owned and stay there forever, doing nothing but looking out the window stoned. He was really pissed when I dragged him back to London. It doesn't sound like you're this type of person though.

    By the way, didn't that Stanford internist recommend/prescribe cognitive/behavioral therapy for you? Did you pursue it? I find it hard to believe it would help you in particular (as opposed to certain others with or without CFS--pre-existing psychological issues are hardly _solved_ after people get the disease), but it would be interesting if you did indeed find it useful.

    Best, Lisa

    [This Message was Edited on 04/17/2007]
    [This Message was Edited on 04/20/2007]
  2. desertlass

    desertlass New Member

    Can I join this thread? I read Swedeboy's post about the medication issues, (which came up on the yeast thread) and the whole issue of what to do if one is on, needs to be on, or wants to not be on medications. Also, there are some broad assertions as to the way medications work that perplex me.

    But I don't want to get off on this subject before Swedeboy has a chance to respond. I liked your analogy about dirt, Lisa, and I'll give another analogy, but like I said, I'd rather wait 'til you guys had a chance to talk to each other, first.

    I have not started the methylation protocol for this very reason. I thought I would have to start at just getting off my meds, first. Of three meds, I take lorazempam, which is in the same family as Klonopin. So, I have been... in a muddle about all of this.

    This will at least bump the post for Swedeboy.
  3. Slayadragon

    Slayadragon New Member

    I moved this one off the methylation thread.


    I really like Klonopin and find that it makes me feel much more alert and rested the next morning. Some people (including those with CFS) do get hangovers though. It will be interesting to see what it does for you.

    Dr. Cheney's original recommendation for a "usual" dose was 1.5 mg. I don't remember what he's suggesting now (I don't think I asked mcondon). But starting very low to see if you have a reaction seems a good idea, since CFS patients tend to be sensitive to stuff.

    I never tried Klonoopin + melatonin before I went on the Famvir. I wish that I had, though. I took Klonopin with doxepin for a while but never did well with the doxepin. Adding the melatonin has been very good at helping with getting the full night's sleep. (Melatonin never worked on its own for me, and I never thought of trying it with klonopin before.)

    I don't know if you can use melatonin, but that's something to consider. I did do a pretty thorough search on that one and didn't find any interactions with Klonopin or SAMe or anything else that people typically use. Please do your own research though, if you consider it.

    Good luck with the klonopin. Please report back!

    Best, Lisa
  4. Slayadragon

    Slayadragon New Member

    Hi Lisette,

    It's lovely to have you on any thread, in my opinion. I'm just floating hypotheses about methylation though.

    I did about three weeks of the methylation protocol starting in (I think) late February. This was in conjunction with Famvir.

    At first, things seemed to be going fine. Then I had a bad SAMe/doxepin reaction, which knocked the stuffing out of me. I got so weak I had to discontinue the Famvir for a while, which is not part of the game plan.

    I attributed the weakness to doing detoxing and virus killing at the same time. In retrospect, this seems to have been a mistake. (Serotonin syndrome, even the mild version, packs quite a wallop.)

    So I'm experimenting myself at going back on the protocol. The only issue seems to be that I need to be super-careful not to stress my system (which too-rapid detoxing can do), since it's already fragile from the AV.

    If I can do it in low enough doses though, I think it will be really helpful in combination with the AV. I just wrote on the methylation thread about how it helped to cool down my brain.

    I did overdo it though, and got toxic feelings for a day. That is something to avoid, especially since I want my liver to be in tip-top shape to get rid of the Famvir (and later the Valcyte), since hopefully I will be less likely to get bone marrow problems or other side effects if that's the case.

    Anyway, combining the mcb approach with prescription drugs is something that I am going to have to cope with, since I'm on one drug I assumedly always will have to take. (No one's figured out any other way to treat manic-depression.....even a responsible naturopath wouldn't recommend discontinuing that sort of drug.) These are my conclusions so far.

    1) Detoxification is important for CFS sufferers in general, and may be even more so if they're on prescription drugs. (The "dirt theory.")

    2) Detoxing too fast puts stress on the liver.

    3) The liver is essential if we are to process drugs effectively. If our livers are not working, we will get side effects from drugs (maybe permanent ones).

    4) The key is thus to keep the liver in shape. (There may be other limiting factors, but I'm not sure what they are.)

    5) Not going too fast with detoxing from the mcb supplementation seems even more important for those who are concurrently taking prescription drugs. If people who aren't on pharmaceuticals go too fast, their problems seem to be restricted mostly to a) reabsorption of the toxins and b) short-term icky/sick effects. For those on pharmaceuticals though, going too fast also has the risks of a) increasing side effects and b) no longer being able to tolerate the drugs.

    6) Supporting the liver might be helpful in allowing the process to be done simultaneously. (This seems important for everyone, but especially those people using prescription drugs.) Lots of liver support possibilities (milk thistle, dandelion, coffee enemas, whatever) are favored on this board. I personally like non-denatured whey protein (which Rich once said goes straight to the liver), although not everyone can tolerate it. Traditional Chinese Medicine herbs are excellent, if you've got a good practitioner.

    7) I am trying to find out if adding glutathione (other than non-denatured whey protein) makes detox go faster or slower. Knowing this is essential in being able to control speed. I think that nebulizing makes detox go faster but am not absolutely sure, for instance.

    Now, I guess it's possible that some medications keep the body from methylating, but I find it hard to believe they would be approved if so. Everybody has to methylate, and so if they stopped methylation they'd be problematic for everybody.

    I think the argument is more a philosophical one. It's like people who believe that you have to follow "The Diet" when treating yeast.

    At one point my colonics therapist (when she found out I was continuing to eat fruit) said to me, "But why would you feed yeast while you're killing yeast???"

    But yeast is a lifelong problem for me. Never eating any fruit (or anything not on "The Diet") is simply unrealistic and unhealthy, if I have the simultaneous goal of remaining well-nourished over the long term.

    Same thing with drugs. One goal I have is to not be on any drugs so that I can detoxify better, but other goals include a) getting some good sleep and b) not going bananas from out-of-control mood swings. I know I'm not going to detoxify optimally, but that doesn't mean I shouldn't detoxify at all.

    I'm sort of glad you directed this to another thread, btw. I kind of want to get my own thoughts in order and hear other people's opinions before presenting them to Rich. And you're right....this isn't unrelated to the topic of Klonopin at all, which was the original topic of this thread.

    Comments, anyone?

    Best, Lisa

  5. desertlass

    desertlass New Member

    I'll just take advantage. Opportunistic me. :)

    Many interesting things you shared that always give me lots to think about. What I always appreciate about you, Lisa, is that you seem to have a true respect for other people. You remain curious, and see other people as resources of information, and ask them questions. You also report your doubts and mistakes. I find that combination highly valuable in a fellow traveller.

    What you offer gives me a starting place to think about my own personal situation. It never feels like you're trying to convince me of "the ending place".

    The analogy I read somewhere was regarding keeping a clean house while raising children. It's like "shoveling snow during a snow storm."

    The analogy was not to encourage a homemaker to give up and just let the family run wild and only make half-hearted attempts when things got really bad-- I think it was to provide some humor as to how it feels to have that sort of a job.

    I think that both of those analogies-- keeping house and snow shoveling are macro life examples of the micro level job of trying to detoxify.

    For some, medication might always be viewed as part of the snowfall. For me, my medication has been my shovel. It's what allows me to be able to do the work. Otherwise I'd have to get down on my knees and scrape with my hands or use some twiggy branch to try to brush it off.

    There have been a couple of assertions made about how medications work on some threads that I'm not too sure about. What I mean, is I will have to investigate if the assertions are correct in my case--

    I will be coming back to your post with more questions, I imagine. (ones that I can't find the answer to myself.) If you are too busy or sick with all your detoxing and trying new protocols, I understand and won't get miffed if you don't always respond.

    Take care, :)
    [This Message was Edited on 04/18/2007]
  6. desertlass

    desertlass New Member

    for Swedeboy
  7. swedeboy

    swedeboy Member

    Oops sorry for the delay, I totally spaced, hehe
    Thanks for the post!

    I was going to wait until today to start the clonazepam/klonopin, but I started my .5mg last night (I took it around 8pm along with 10mg Doxepin, but I didn't fall asleep until about 1am. I still had difficulty falling asleep, I wonder if the dose is too small. Cheney says to take "2 .5mg pills or more" I'm gonna give it a couple of days and see if it helps before I ask for a higher dose. I am thinking I may need to go to 1mg.

    After I showed my Physician some info on Cheney and how he uses Klonopin, my Dr. seemed okay with it. My Dr. likes the fact that I am researching CFS.

    Yes he did refer me for Cognitive Behavorial Therapy (CBT). Which coincendently I started today. Not sure what to make of it so far. My first session was pretty much consumed by me explaining my background and who I am, etc. I recently read an abstract about CFS and CBT, here it is:

    Journal of Psychotherapy and Psychosomatics.

    "Is a full recovery possible after cognitive behavioural therapy for chronic fatigue syndrome?"
    by Knoop H, Bleijenberg G, Gielissen MF, van der Meer JW,
    White PD.

    Affiliations: Expert Centre Chronic Fatigue, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands.

    Background: Cognitive behavioural therapy (CBT) for chronic fatigue syndrome (CFS) leads to a decrease in symptoms and disabilities. There is controversy about the nature of the change following treatment; some suggest that patients improve by learning to adapt to a chronic condition, others think that recovery is possible. The objective of this study was to find out whether recovery from CFS is possible after CBT.

    Methods: The outcome of a cohort of 96 patients treated for CFS with CBT was studied. The definition of recovery was based on the absence of the criteria for CFS set up by the Center for Disease Control (CDC), but also took into account the perception of the patients' fatigue and their own health. Data from healthy population norms were used in calculating conservative thresholds for recovery.

    Results: After treatment, 69% of the patients no longer met the CDC criteria for CFS. The percentage of recovered patients depended on the criteria used for recovery. Using the most comprehensive definition of recovery, 23% of the patients fully recovered. Fewer patients with a co-morbid medical condition recovered.

    Conclusion: Significant improvement following CBT is probable and a full recovery is possible. Sharing this information with patients can raise the expectations of the treatment, which may enhance outcomes without raising false hopes. Copyright (c) 2007 S. Karger AG, Basel.

    PMID: 17426416 [PubMed - in process]

    You can access the abstract here:
    then type in chronic fatigue syndrome and press go.

    I think one (especially the general public) has to be careful when interpreting this abstract, because I feel that it could give the wrong impression of CFS. I'm sure this abstract will appear in next weeks Pro Health's e-newsletter.

    [This Message was Edited on 04/18/2007]
  8. desertlass

    desertlass New Member

    Cool! You've connected and now I can totally hijack your posts. ;)

    Let's see. Re: Clonopin. I'm wondering about this aspect of the Cheney treatment. I have taken lorazepam for six years. It is a long-acting benzo, and I feel that I have built a tolerance to it.

    It doesn't help me sleep, but it helps so many symptoms by "turning down" my nervous system, as well as to calm FM muscle spasms, so that's why I've stayed on it.

    I was on 3 mg, but tapered down to 2 mg. I wish I could go back to taking that third one in the morning, because I felt _more_ alert, not less. Hmm.. perhaps I have a polar reaction to it...

    But that makes no sense to a doctor of course, so I can see why they would be leery of prescribing a daytime sedative to a patient complaining of daytime fatigue. They would rather that I was off of it altogether, and only on Paxil. With Dr. Cheney's views on SSRIs, I'm wondering if it shouldn't be the other way, but sigh... the Paxil also did wonders for my anxiety. I'm afraid to go back to jumping at my own shadow, but I also don't want to "fry my brain".

    I'm wondering how Clonopin compares to the other benzos-- and why it is Dr. Cheney's benzo of choice. I'm wondering if switching to it would do me more good than the lorazepam. I know you guys probably don't know the answers to this, but I'm just pondering out loud.

    I keep going back and forth on whether to keep tapering off, since the mcb protocol seems to encourage it, and being on a benzo long-term has not helped my CFS. Who knows, maybe I would be at zero without it. But I guess you guys can probably see my dilemma.

    I have many questions about the protocol, but I feel strange asking them on the numbered threads when I'm not yet starting it. Every time it starts to make sense to me, something is posted that confuses me, which makes me think I have no grasp on it at all. Would it be okay if we used this thread for that purpose? You and Swedeboy would be the newbies to put up with my "pre-newbie" concerns? I can't be the only one who is wanting to try it, but flummoxed in some ways.

    [This Message was Edited on 04/20/2007]
  9. swedeboy

    swedeboy Member

    Yeah feel free to make any comments you wish on this thread.
    I agree with you, certain aspects of the methylation protocol are very technical/scientific and are hard for me to understand too.

    smiles, Sean
  10. desertlass

    desertlass New Member

    If you wanted to talk about CBT, I have been through that process, and have some ideas about it, if you'd like to discuss that along the way. I see its merits, and also its deficits. It would be great if you could get only the good it has to offer, and not its "dark" side.

    Best wishes for your success on mcb.

  11. Slayadragon

    Slayadragon New Member

    Hi Lisette,

    What makes you think that you have built a tolerance to lorazepam?

    Dr. Cheney originally recommended Klonopin (this was maybe around 2000), he said that he found that it was the only benzo that worked for this purpose. To my recollection, he claimed that it has stronger anti-convulsant properties than other benzodiazapines, and thus helped to soothe the "agitated exhaustion" that CFS sufferers tend to feel. The goal of using the drug was supposed to be to get patients to sleep and to let them have them deeper sleep.

    He originally recommended 1.5 mg, and now it seems to be 1 mg (more or less). I've not had success with less than 1 mg. Some people here have had a little success with .5 mg, but it's been my observation that they've soon gone off the drug completely (suggesting to me that it did not feel good to them and wasn't right for their systems). I'm not omniscient and am sure I've missed people who have been helped by small doses, of course.

    Dr. Cheney suggested that the brand-name Klonopin worked better than generics, in his experience. My own experience is that generics vary, and that some require higher doses in order to work than when I'm taking the brand-name. They all do seem to work though.

    Since that time, some doctors (I believe that Dr. Teitelbaum is one) have suggested that Xanax has similar anticonvulsant properties to Klonopin and thus tends to work well for CFS patients. I've never read anything else by any experts that recommends any other benzodiazpine for this purpose.

    My psychopharmacologist (who's really excellent) was a bit perplexed by all of this. For a long time, he asked me at every single appointment whether the Klonopin was making me more tired in the morning, and was surprised when I said that it made me wake up feeling much more refreshed and ready to start the day.

    He has brought up the idea that Klonopin has a relatively long half-life, and been perplexed by the fact that I say it gives me only six hours of good sleep.

    He gave me a sample of another anticonvulsant (I can't remember which one), and was perplexed by the idea that it did nothing for me.

    He also is a little perplexed by the idea of my using Xanax (which I do when I want a nap or wake up early) and Klonopin (which I do on a regular basis), rather than choosing one or the other.

    He's a smart guy and appears to trust me, and has refilled the prescriptions during times that my CFS doctor's office has had administrative meltdowns (the one disadvantage to using my CFS doctor). But he sees thousands of patients with all kinds of mental disorders, and apparently my brain works differently than all of them on this issue (even though it seems consistent with the brains of other CFS patients).

    After looking at my Immunosciences results, the psychopharmacologist now seems to believe I have a disease that he doesn't quite understand and that it might indeed affect my neurochemistry. He seems a bit less perplexed these days when I explain to him how I'm reacting, anyway.

    Dr. Cheney recommends doxepin and gabapentin as adjuncts to the klonopin to keep people sleeping through the night (rather than waking up after six hours). Doxepin and gabapentin give me huge hangovers no matter how little I take, and so after a lot of experimentation I have decided to avoid them.

    My body simply does not like most drugs---the only ones in my life (including alcohol and pot--the latter of which, for the record, I tried _legally_ in Amsterdam) that have ever made it happy are Lamictal, Klonopin and Xanax. Before I started Famvir, I slept through almost every night for 8-10 hours with just Klonopin. Since the Famvir, I've added Xanax several times a week in the early morning and then gone back to bed. Hopefully after the Famvir (my CFS doctor says), I won't need that stuff at all. We shall see.

    I don't know about the anxiety. I suffered intense anxiety for a while after my head injury; now (perhaps with the help of my doctor's neural therapy, which is supposed to repair such injuries) it's totally gone. My husband has suffered severe anxiety his whole life, but after two weeks of liver treatment by a Traditional Chinese Medicine doctor, it is totally gone too. So I think a lot of things cause anxiety, many of which do not have anything to do with neurotransmitters.

    Unfortunately, there aren't many good direct treatments (meaning pharmaceutical or herbs) for anxiety....my husband and I have thoroughly investigated and tried all of them by now! Paul was unhappily on a combination of Buspar and Prozac (tiny doses) for years and years, but was able to give them up shortly after starting the liver treatments. Probably there are lots of other diseases that cause severe anxiety too, although I'm not sure what they are.

    As natural things go, B vitamins, l-theanine and magnesium seem to work as well as anything. And to my knowledge, they don't seem to react with benzos or antidepressants. For the record, SAMe and 5HTP might react with antidepressants. GABA, kava kava and valerian might react with benzos. Those combinations should be used very very carefully if at all, most experts say. (St. Johns Wort theoretically could react with antidepressants, although I've not yet heard of it actually happening.)

    (Note: I am not a medical professional, and so please, no one should take any of this as advice!!!)

    I would like to point out that a number of people here have used the mcb protocol and _then_ gone off their meds. For example, Delia stopped her benzo (for sleep) a couple of weeks after starting the program. elliespad did not require several meds/supplements for pain and sleep for at least quite a while after her first experience with the mcb protocol. (She went way too fast the first time, and I'm not sure if she's back on.)

    The idea that meds must be discontinued before the protocol works seems to me inaccurate, therefore. Rich Van K recommends that they be discontinued for optimal results, but that's different than saying they must be discontinued. (Amy Yasko seems much more of a hardliner, but that may be expected since she's a naturopath.)

    Doctors definitely prefer antidepressants to benzos, even though it seems that AD's are addictiv tooe. in any case, most MD's just don't understand how CFS works. Maybe swedeboy can let you know how he went about convincing his own doctor to prescribe Klonopin.

    Do you feel like your brain is being fried by the Paxil? Intuitively, I mean?

    My feeling with antidepressants was that they gave me false energy and wore me out underneath. I doubt they're as bad as Ritalin (which used to be prescribed for CFS), but moving in the same category.

    However, the fact that AD's control your anxiety may mean that they're necessary unless you can figure out an underlying cause (e.g. as my husband just did). I'm not sure benzos alone are great for anxiety.....when used for that purpose tolerance does tend to build, which is why doctors tend not to like them. And unfortunately CBT does not seem to have solved your problem, which to me is disappointing but not entirely surprising.

    In looking at Swedeboy's bio, I noted that he has OCD thoughts. These are related to anxiety. Have you had any success in controlling these with any particular treatments over the years, swedeboy?

    Best, Lisa
  12. swedeboy

    swedeboy Member

    About the OCD type thoughts. I haven't found any pill form treatments for the OCD thoughts that have helped. For me the most effective treatment has been behavioral modification. It's a constant battle, but I just try to identify the thoughts as just thoughts and then I do my best to not react to them with anxiety.

    I get these "what if" thoughts. Like "what if" my CFS gets worse? What if SSDI runs out and I'll be homeless? What if my Doctor thinks my CFS is in all in my head? etc.. And when I have these thoughts it's very easy for me to go into panick mode. BUt I am learning to identify them as just thoughts and not reality. I'm over-simplifying it, but so far it's the best treatment I've found. Also as of tuesday, Clonazepam was the first time I've used a benzo.
  13. desertlass

    desertlass New Member

    I don't know if this is the case, but I was put on the lorazepam for muscle spasm for a back injury. My incompetent PCP thought it would less likely to cause addiction than valium, which is often prescribed for its muscle relaxant properties. I was in too much distress to research this, and later found that lorazepam is 4x stronger with a much longer half-life? Gee, thanks.

    Anyway, this seemed to help so much with so many things-- turning down the nervous system quieted the screaming nerve pain, helped with anxiety, obviously, and also seemed to help _me_ with depression as well. I felt more alert, more able to cope and relaxed but not goofy-drowsy.

    Once the back pain issue calmed down, I dropped the first morning dose, and tapered down to taking 2mg at night, which is where I've been for three or four years, now. I was wondering how lorazepam compared to Klonopin in terms of what a switch would be like-- if I'd be going higher or lower on potency. I have already looked on the benzo.uk.org site, but I may have missed something there.

    Anyway, the reason I think I have built up a tolerance is that I don't feel the same sort of relief that I used to-- it just feels like I'm simply keeping withdrawal at bay. I have started to have increased nerve pain from the fibro, and it does nothing to make me sleepy. Perhaps sleep is not it's primary function, but they didn't want me on Xanax for sleep because it would not last as long and I'd be more likely to wake up.

    I have come to think of these meds as long acting and short acting. It makes sense to my why one would use Xanax for naps or falling back asleep in the middle of the night. I wish I could take Xanax again, but since I have no more panic episodes, they (ostopaths) really seem to want me off the benzos, and to use Paxil as the long acting anti-anxiety drug, with a benzo for occasional "breakthrough" anxiety. It's all very convuluted for me, because the benzos do a LOT for my pain, almost as well as the pain reliever does.

    The big elephant in the room reason why I think I have built up a tolerance is that two times since being on it, I have had an outpatient procedure when they used Ativan, and they had to use a LOT. For the first one, a caudal injection for my back, the doctor used as much as he felt to be safe, and I was nowhere NEAR sedated (about to levetate off the guerney). He told my husband that he had NEVER used that much on anyone and was afraid to go higher. The second time was for oral surgery a couple of years ago, and the surgeon told me that had to use "an EXTREMELY high dose" to get me to go all the way under. And then he was looking at me as if I SHOULD be the big elephant in the room.

    So, those are not meant to be scary stories. I just had to be honest about why I felt the way I did. So, I need to do a lot of consideraton of the benzos, and what would be the right course for me. Going off lorazepam altogether, and then trying Klonopin. Just swtiching.

    Or the problem could be seen as "you have been keeping your brain 'cooled down' this whole time, which would be a third reason for staying on it. Why it's a confusion for me is that I went on it for one reason, back pain, stayed on it for another reason, fibro nerve pain, and am considering staying on it for a third reason, brain neuro-protection. I will let you all know what I find out and what I decide to do.

    My next issue is "Paxil" for the next post.
  14. desertlass

    desertlass New Member

    After reading the post I just wrote, I feel that I should add that I'm tall and only a little overweight. In fact, when i had the first outpatient injection I was extremely underweight. So, I don't think weight is factor in my case.

    Anyway, on to Paxil:

    Fry my brain feeling. I too, feel like the SSRIs can be like putting my finger in a light socket. I cannot tolerate them at all. But, I do get depressions as a result of anxiety overload, stressful painful ordeals, and just the whole mess of grieving. My old pain doc put me on the CR version of Paxil, because she thought that would really help me with anxiety as well as depression, and I tend to have a social anxiety/phobia when things get really bad. I feel like the Paxil must adress an area of the brain that has to do with aggression. I was amazed at how I no longer felt like people were looking down on me, and in fact I stopped thinking that they were thinking of me at all! I felt more assertive and more inclined to defend my opinion. There was a brief period where I felt like it tapped into some actual anger and frustation, and but then that faded, and then I just felt normal (like I did in high school and early college.)

    I can understand why those of us who are sensitive to meds would feel "fried" on SSRIs. It makes me feel slightly wired in the beginning, but not in a natural way. I think I would rather go off the Paxil, and use the lorazepam to help me get through it, if I had to pick one.

    I had a feeling of OCD when it came to my anxiety about my body. Every little symptom would trigger a panic attack, or a long bout of anxiety. Mine wasnt "what if", but "what's that?" or "does that mean something?" Now I just take it all in stride to a degree that amazes even me. Part of me wants to go off the meds to see what is med, and what is truly me just maybe having learned how to cope? Perhaps I still might need to be on a certain amount, and some compounding pharmacies have micro doses of anti-depressants for the senstive, or for those who need to wean extremely slowly. Again, I will let you know what I decide, but my leaning is toward getting off the Paxil, first.

    As far as the mcb protocol goes, I think going off the Paxil first would be the best, and see what addressing liver function does for the anxiety. I have kids, so obviously if I start to obsess or panic again, I will have to reassess. No amount of needing to do some ritual purification of toxins is worth anything that will make their lives bizarre.

    I don't do well on St. John's Wort any better than the other SSRIs. Paxil is a kind of SSRI, in its own category, and I think the only reason I could tolerate it was because of the controlled release. This is the case with me and any med. My metabolism is like cookie monster when it comes to meds... it just chews through them like they were nothing, and I get all the side effects at once with the therapeutic value far in the distance. I am a real pain to treat.

    But, tomorrow I get results back from my adrenal test. So, this has been really valuable to help me sort out my thoughts as I go into that appointment.

    So many more questions, but for now, I thought I'd answer the ones posed to me, because they might be of use, just to hear my situation, for someone.

    I will be posting more questions about mcb and your husband's liver treatment next time.

    Swedeboy, I hope the Klonopin gives the best nights of sleep ever! I was DESPERATE for sleep last night after a couple of weeks of patchy sleep, so I took a benadryl and finally dropped off. Today, I felt human again for a while. Sleep has to be worth its weight in gold when it comes to our health-- inmho, more important than being completely toxin free. I try to keep my purist tendencies in check.

    thanks, guys! Even if you don't read it, it gave me a place to put it-- I'm not great at journaling.

    [This Message was Edited on 04/20/2007]
  15. desertlass

    desertlass New Member

    I've also tried taking straight GABA supplement. It was okay-ish. I can't figure out why it would not be just as good. From what I understand, the benzos tell your body "make more GABA, make more GABA", until the body stops making its own message to "make enough GABA". I thought that when someone went off of a benzo, the body is no longer sending the message to make any, or not what is a normal amount, and so the withdrawal.

    I thought the same was true with narcotics: "make more endorphins, make more" until the normal message is drowned out, and the body stops that process after a while, and constantly has to be given the external message.

    I thought giving it the GABA would be better than giving it the message, but perhaps this whole area of amino acids and neurotransmitters, of which glutathione is both, is not as simple as straight supplementation. But I'm getting off onto another topic. I have a entire folder on glutathione, so quickly will I scurry over to the "post this reply" button>>
  16. Slayadragon

    Slayadragon New Member

    Hi Lisette,

    So the doctors never intended to give you a benzo to help anything but your back injury. No wonder they don't understand why it would be helping you in general---maybe it's sort of like, oh, you must be addicted now. If so, and if they're open-minded (many doctors aren't), maybe Sean's strategy of bringing some materials by Dr. Cheney stating that Klonopin is really good for people with CFS would be helpful.

    It looks to me at first glance that Klonopin and Lorazepam come in the same basic strengths as one another---.5 mg, 1 mg and 2 mg. That seems like they must be about the same in terms of strength. (Xanax seems stronger--the pills are more .25 mg, .5 mg and 1 mg.)

    The mcb protocol is not an all-or-nothing thing, I'm beginning to think. In fact, from what I can tell, Amy Yasko encourages people to take it in steps rather than starting a bunch of supplements at once. The "simplified protocol" makes it seem like you need everything on the list for it to work, but in reading Rich's comments over time I've realized that's not true at all.

    Forebearance has been having a really good experience with taking just tiny amounts of the folate supplements and the hydroxycobalmin---in particular, she says her sleep is better.

    And if sleep is better, probably the brain is calmed down as well. Based on everything I'm reading, the folate + hydroxycobalmin seems to be really good at calming down the brain (making benzos less necessary for people). I don't know that the sort of calming would relieve anxiety of the sort being addressed by Paxil, but maybe it could be useful at counteracting the "frying your brain" syndrome.

    At first, I thought the supplements automatically had a detox component to them. However, Forebearance is using small doses and only getting brain-calming benefits. That's what I want right now. Eventually some detox will probably be good too, but for the time being just getting the calming benefits (if I can do that) would be great.

    Forebearance is very sensitive to everything and is taking tiny amounts. I wouldn't be surprised if it's 1/100th of each of the pills. She seems to know her body very well though, and I believe her when she says she's getting results.

    I decided to follow Forebearnance's lead today and try about 1/32th of a pill of the FolaPro. I felt sleepy all day afterwards, which may or may not have been related. We shall see.

    But anyway......those supplements have a big effect. Easing in seems like a good option for us who are sensitive and/or unsure, I think.

    The problem with the mcb protocol is that it seems so complicated that people either a) are afraid to try it or b) feel they have to follow the recipe exactly. I now tend to think that if I take a little folate and some B12, and then I feel more calm and sleep better, probably nothing too terribly bad is happening. And if it helps me take fewer drugs, so much the better.

    Others may disagree, of course.

    I never had any luck with GABA, unfortunately. Mostly what it did was (if I took a large dose--say 750 mg) make me fingers feel a bit numb for a little while. There's something about it not going through the blood/brain barrier, maybe?

    Did I ask you before, have you tried l-theanine? I like that one and DLPA a lot, but haven't had success with any of the other amino acids.

    I'm going to keep writing about my experiences with the folate supplements on my Famvir status reports, and so you can read about them there if you like. Also, this is going to sound kind of silly, but I like to think of my status report threads as a sort of "salon"---a gathering place for pleasant and supportive conversation about a variety of topics (health-related). if you have time, please feel free to join in. :)

    (And if Sean is still reading....it would be delightful to have you come visit too, of course.....)

    Best, Lisa
  17. Slayadragon

    Slayadragon New Member

    Hi Sean,

    So is the Klonopin making any difference for you?

    Best, lisa
  18. swedeboy

    swedeboy Member

    So far the clonazepam is not helping with my sleep. I think I need to increase it to a more effective dose. I mentioned this to my Doctor and he said to stick with the .5mg dose for the first week and then if needed double the dose. I feel it making me slight drowsy, but nothing strong enough to make me fall asleep any sooner.

    I go to bed around 11-12 but I'm not falling asleep till aroud 1-2am, despite what time I wake up in the morning. I don't have a tv in my room, and I make my room as serene as possible. So hopefully the .5mg clonazepam will start to work, or at least if I double the dose it will work. I even tried taking my doxepin and clonazepam earlier in the evening, but no luck.

    Also it could be that the generic is not as good as the brand name. Medicare completely covers the clonazepam, I wonder how much $ it would be for brand name klonopin?

    Best, Sean
    [This Message was Edited on 04/20/2007]