Famvir Status Report Week 26-27

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, May 13, 2007.

  1. Slayadragon

    Slayadragon New Member

    Sunday, May 13
    Famvir--Day 190

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15-20: 500 mg
    Day 21-22: No Drug
    Day 23-27: 500 mg
    Day 28-29: 250 mg
    Day 30-36: No drug
    Day 37-50: 250 mg
    Day 51-57: 500 mg
    Day 58-63: 250 mg
    Day 64-65: 500 mg
    Day 66: 250 mg
    Day 67-87: 500 mg
    Day 88-98: 250 mg
    Day 99-130: 500 mg
    Day 131-32: 250 mg
    Day 133-137: No drug
    Day 138: 500 mg
    Day 139-142: 750 mg
    Day 143-80: 1000 mg
    Day 181-82: 500 mg
    Day 183-90: 1000 mg

    My new plan is to spent 16 hours a day either sleeping or resting quietly in a dark room. This is based on the experiences of wealthy tuberculosis patients in the early 1900's, a very high percentage of whom got totally well due totally to having a period of total rest and good diet in a secluded and pleasant environment.

    The goal is to allow the immune system as much energy as it can get in order to attack and kill pathogens on its own. I do not believe this is a realistic strategy for CFS patients in general, since their immune systems are broken to the extent that they cannot possibly kill the many viruses in their systems. (I am talking here about the segment of CFS patients with a viral component as their main problem, of course.)

    But for those people who have killed off a lot of viruses with AV's and whose immune systems are starting to work, I think this could be a hugely useful component in allowing full wellness to be achieved....and perhaps even relatively quickly. (TB patients rarely recovered on their own, but often did so within six months in good sanitariums. Eugene O'Neill--who focuses some of "Long Day's Journey into Night" on the subject--was one good success story, for instance.) I feel like it may well be a breakthrough for me anyway, and perhaps for others as well. It will be interesting to hear what my doctor says about this approach.

    I spent more than 15 1/2 hours last night and today lying in a dark room, and slept 14 1/2 of them. (My plan is 16 hours of rest per day, but perhaps I can make the extra 20 minutes or so when I'm done with this note.) Apparently my body is delighted to get lots and lots of sleep, if I give it the opportunity. I had been getting 10-12 hours of sleep per nighr recently, but that seems not to have been enough. That in itself seems to suggest that I am on the right track.

    Moreover, I had waves of feverish feelings almost the whole time I was in bed (or at least, insofar as I was awake to notice them). This is not usual---the feverish feelings usually happen just several times a day. Since these feelings seem to me clearly associated with my own body killing viruses (rather than the workings of the drug), this further adds to my belief that I'm doing the right thing.

    I felt slightly better during the time that I was awake than I usually do, which is also a good sign. Today I stayed home and made a nice little dinner, but I plan to go out on occasion as well as long as I make sure to get the assigned amount of rest while I'm home.

    It's rather interesting how easy it is to rest now that I have made it into a task. It makes me realize that I must not have---deep inside---made it into a real priority before now.

    My main concern at present is a two-day presentation that I have to do in SF during the third week of June. (I also plan to travel to the doctor the week prior unless it seems like a bad idea.) This was my initial impetus into putting as much effort into making healing progress as I can (although the strategy has turned out to be so good in general that I would pursue it regardless). I'm going to have to think carefully about adjusting the dosage of medicine and to what extent I want to use external stimulants (caffeine or cortisol) to get me through that time. But for now, just resting for the next couple of weeks and then seeing where I'm at by then seems the best strategy.

    Even with the addition of Florinef, my blood pressure has been a bit low (95/70). I'm getting the feeling that my adrenals are feeling the stress, and so I've been adding a bit more adrenal extract and a very small amount of DHEA. A tiny bit of cortisol on a daily basis might not be a bad thing either. I don't think they're in bad enough shape to worry about, but keeping a sharp eye on them is well worthwhile.

    [This Message was Edited on 05/19/2007]
  2. Forebearance

    Forebearance Member

    Wow, how interesting, Lisa. I'm glad you're getting a good response from your body to this approach!

  3. getwellgirl

    getwellgirl New Member

    Hi Lisa

    With a bp like yours you would almost certainly benefit from low dose h/c. Within 30 minutes of taking 5mg h/c my bp would rise to a normal level of 120/70 and I would feel much better.

    If your adrenal cortex is that weak it would explain your need to sleep so much and you won't be doing yourself any favours not to support with h/c. It doesn't mean that you would have to be on it for life. If you go on with hypoadrenals then this will affect your thyroid too and this will get turned right down which further complicates the situtation. You will then get even more viruses and not be able to fight them. This is what happened to me over the years because my adrenals weren't treated and my thyroid got involved many years later.

    A safe low dose protocol is probably up to 15mg daily h/c (at least according to Dr Myhill) but I needed to go as high as 25mg when I first started treatment. These days I get by on much lower doses but use low dose Pred instead, usually just 2.5mg daily (equivalent to 10 mg h/c). Also I now have to take Armour and a bit of thyroxine.

    Sorry I didn't mean to preach but the adrenal issue is so often overlooked in CFS and yet it is so damaging to recovery.

    [This Message was Edited on 05/15/2007]
  4. Forebearance

    Forebearance Member

    How are things in the CFS sanatorium, Lisa? Are you still finding that you are able to sleep most of the time you are resting quietly?

  5. Slayadragon

    Slayadragon New Member

    Hi Cheryl Sue,

    Sorry to be so long getting back to you from my last thread. I actually wrote a response, but then realized I was being very grouchy that day (nothing to do with you!) and erased it, planning to rewrite it shortly. Then I stopped writing on the board for a while. So sorry!!!

    How is the TCM going? Have you gotten any positive results yet?

    My sinuses haven't been any worse recently than they've been for the past decade. Still, it's a problem I'd like to rid myself of. I tend to think that once my immune system starts working, it will happen automatically. (Or with the help of Candidase anticandida enzymes, although I've sworn not to use those until I'm done with the AV's.) I know what you mean about it making you really tired. I've experienced that a number of times over the years when the problem has flared up, and it really knocks the wind out of you.

    I've never tried a neti pot because I don't like getting water in my sinuses. I've had a small amount of success with colloidal silver nasal spray when the sinuses have acted up. And when I had yeast die-off during the small amount of time I was on Candidase, just saline nasal spray seemed to help. Some people are really helped by neti pots. They're not expensive, and so if you don't mind getting water up your nose (I can't even swim except dog paddle because I hate it so much), they seem like they'd be worth a try.

    My doctor said that transfer factor and AV's would be a good combination if I can tolerate them. I wrote a post on my understanding of how they work together a while back---maybe I can find it. I should keep a copy of stuff like that.

    I'm not planning to do this megasleep for an extensive period of time, and I don't think it's the right thing for most CFS sufferers. I think it's the right thing for me at this stage in my illness, even though I don't think it would be helpful at others. I will write more about this in my next status report.

    I never did get a postcard from Dr. Guo. Hmmm. Maybe he's trying to build up business in the office you go to?

    I hope you're doing well these days.

    Best, Lisa
  6. Slayadragon

    Slayadragon New Member

    Hi Kelly,

    I'm glad you had a good visit with your cousins. My feeling is that if I'm going to spend energy on stuff like that, it better be worth it!

    I can't remember the name of the pine cone extract I used. The stuff about ImmunExtra I've seen says it's new though, but that doesn't mean that another version didn't used to be available. I am pretty sure that what I used was drops that I added to water, and that they tasted faintly of pine. Maybe it was called PineExtra? Or Pine-somethingelse? God, that was like a decade ago. I _know_ it was pine cones rather than pine bark though. Whatever it was, it must have been discontinued since no one here has been able to find it.

    As I said, I never had any luck with any of the Th1/Th2 shifters. Maybe it will be different after I get through the AV stage of my treatment though.

    If you have a lot of extra money to spend on your thymus, you could consider the frozen extracts made by Atrium/Douglas. They have thymus, mesenchyme and adrenal in them. (They keep changing the name, so I'm not sure what to tell you.) My doctor is crazy about them, and I used them for a while when I was first on the Famvir. They're good, although I'm not sure how much of the help was from the thymus. (I personally think that mesenchyme is helpful to me, although maybe the HGH is doing sort of the same thing.) It costs like $300 for 30 bottles though. You're not supposed to take it all the time, just as kind of an "emergency" measure.

    I liked the acetyl-l-carnitine and Co A mix that one good week I had. I think my apparent immune system action is covering up the effect now, but I certainly would recommend a try, especially for those who are taking all those other supplements (NADH, CO Q10, magnesium, ribose) already.

    Please read the thread started by cindycor and addressed to me about Vitamin C. Cindy seems to be tolerating huge amounts of Vit C with the addition of baking soda, which is very exciting. I am going to try it and see how it goes.

    Based on the many things that you've said, it sounds to me like you've made tremendous progress on the Valcyte. Do you think you've continued to improve over the past couple of months?

    Thank for the Volvic water reminder. I've yet to get to the grocery store, but soon.

    Best, Lisa
  7. Slayadragon

    Slayadragon New Member

    Hi Pam,

    I'm very glad to find another adrenal advocate on the board. People are talking about adrenals more now than when I first joined eight months ago, but I still don't think it's nearly enough.

    Immediately after I got sick about eleven years ago, my adrenals were extremely weak. Fortunately, I found out about it almost right away and was able to address it. Adding DHEA (I was at 50 mg for a long time) to get my levels to normal made a _huge_ difference for me, bringing me from suicidal and almost bedridden to a moderate level of functioning. Florinef brought my blood pressure to normal (for a while it was 85/55 a lot of the time). I never measured low for cortisol, but since my levels were reversed, I took 5-20 mg in the morning (especially when I knew I was going to be under stress) for a long time. I also took adrenal extract.

    Over the period of a decade, my adrenals got to the point where they were working well on their own. I'm not sure how that happened. Maybe just supporting them all that time, or finding other ways to improve my health?

    My doctor told me the Famvir would decrease my adrenal function, which has happened. I've been supporting with glandulars and a little bit of DHEA, which seems (based on my knowledge of what it feels like to be low) the right amount. My level was okay a couple of months ago, but my adrenal functioning seems to have declined very recently.

    My blood pressure dropped from normal (115/70) to around 95/70 (some of the time) really quickly. Adrenal functioning can fall apart very fast on antivirals, unfortunately.

    I started taking .1 mg of Florinef last week, and my pressure is up to about 110/70 most of the time. I had been using only a small amount of Cortef (5 mg), but perhaps I will increase it a bit too and see what happens.

    The good thing is that I know how my body feels when I'm low on various hormones. I would think it would be a whole lot harder to be on an antiviral if I didn't.

    The sleepiness that I've been experiencing does not seem related to my adrenals, but paying attention to the adrenals is certainly really important. Thanks for the encouragement about the h/c. And again, I'm really glad you're making mention of this on the board.....it would be really helpful for a lot of people here to attend to that issue.

    On another topic, how are you doing with NADH? The last I heard you thought it was helping rather than hurting you, but I'm not sure if the verdict changed since then.

    Best, Lisa
  8. bigmama2

    bigmama2 New Member

    hope the extra sleep helps you!!

  9. Slayadragon

    Slayadragon New Member

    Monday-Thursday, May 14-17
    Famvir--Day 191-194

    Days 1-6: 250 mg
    Days 7-13: 500 mg
    Day 14: No Drug
    Day 15-20: 500 mg
    Day 21-22: No Drug
    Day 23-27: 500 mg
    Day 28-29: 250 mg
    Day 30-36: No drug
    Day 37-50: 250 mg
    Day 51-57: 500 mg
    Day 58-63: 250 mg
    Day 64-65: 500 mg
    Day 66: 250 mg
    Day 67-87: 500 mg
    Day 88-98: 250 mg
    Day 99-130: 500 mg
    Day 131-32: 250 mg
    Day 133-137: No drug
    Day 138: 500 mg
    Day 139-142: 750 mg
    Day 143-80: 1000 mg
    Day 181-82: 500 mg
    Day 183-94: 1000 mg

    I am increasingly convinced that my immune system has started to become functional.

    If so, it is the best possible thing that I can imagine. A huge celebration is warranted!

    Feeling good in the short-term is pointless; what I want is to be well for the rest of my life. For that to happen, my immune system needs to work on its own.

    Eventually I will find out if this is true. I don't think for the time being tests would help that much though. Those tests are not really reliable.....I believe they can tell if someone is really sick or totally well, but the margin of error undoubtedly is high enough that improvements aren't necessarily going to register.

    So for the time being, I'm just going to keep my fingers crossed and keep plugging along. We shall see.

    I have found that it is difficult to lie in a dark room for 16 hours a day. Why this should be the case, I don't know. I have come closer to the goal on some days than others---ranging from 12 to 16 1/2 hours. My sleep has been between 9 and 15 1/2 hours (averaging around 12).

    The main symptom I have experienced is waves of feverish feelings. These occur nearly constantly when I am lying down at rest, and rarely when I am up and about. (Or more specifically---they start about an hour after I lie down, and keep going for about 1-2 hours after I get up.)

    Feverish feelings are absolutely reliably associated with viral killing for me. I thus am convinced that the super-rest I'm getting is allowing my body to kill more viruses, which is my goal at this point.

    The feverish feelings are concentrated in my abdomen, and interestingly they move about.

    For several hours one day, I found that the right front part of my torso was extremely feverish whereas the rest of my body was pretty normal in temperature. A bit of concentration made me convinced that the feverish feelings were in the exact shape that I would expect my liver to be. I was not aware that I had viruses in my liver, but (considering my total viral load) it would be more surprising if I did not have viruses there. In any case, the liver is important, and so if I've killed viruses in it, I'm very happy about it.

    My head has been quite foggy much of the time, both when in bed and out. It's just as well I wasn't giving it any stimulation, since much of the time it hasn't been up to processing anything anyway. I've had a bit of emotional lability, with some vague depression and irritability. I'm attributing that to viral killing in that area, since it's only occurred some of the time that I've been feverish (and on occasion when I'm lying in bed and not feverish at all).

    All of this feels _much_ different than the die-off did earlier in my Famvir usage though. Earlier on, it felt really _painful_. Things felt inflamed and out-of-control. That's not the case now. I'm tired and groggy and feverish, but everything feels in control. That's a good bit of why I think my immune system is working now. Certainly, it's keeping the viruses that the AV is preventing from hooking onto cells at bay. But I believe (at admittedly a purely intuitive level) that it's killing on its own too.

    Insofar as I understand the process, that would mean that the NKCs have become more active and are seeking out hiding viruses and striking them down. If that's the case, it's really exciting since they can kill _any_ viruses. They're not limited to the ones that the Famvir targets. My doctor said that was the goal, and maybe it's actually happening.

    (This is not to say that I am necessarily tolerating the Famvir on my own, though. My sleep falls apart and I start to feel bad very fast if I skip the HGH even one day. I don't know why. Maybe my body is not manufacturing HGH on its own these days and I'd feel bad even if I stopped the Famvir for a while. Upon reflection, I've never figured out why the HGH has helped me so much in terms of tolerating the drug---maybe I really am very very low naturally on it as a result of stress to my system. I will get my IGF-1 level checked shortly and find out.)

    The fact that the feverish feelings get so much stronger when I'm resting makes me feel like the rest is indeed a good idea. My immune system seems like it is putting every bit of resources that I give it to work, and so giving it as much as possible seems well worthwhile.

    My head has been clearer yesterday and today than it was earlier in the week. I don't think that means that the viruses have been cleaned out of my brain (by any means!), but it's nice to get a break.

    My temperature often has been around 99.2 during the past several days. This is extremely unusual for me. Throughout my illness, it's almost always been 98.6 on the dot. (And I wonder why people don't believe I'm sick!) At certain points when I was worn out from the Famvir it was low (e.g. 98.0), but _never_ high. I'm taking the slight fever as a good sign, the my immune system is burning off viruses in a consistent but controlled way.

    I have continued to be relatively thirsty (although not nearly as much so as at some points). My muscle pain is all gone, but my lower back has occasionally ached a bit. I tend to think that my kidneys are not as well as they could be. This is not a surprise---Famvir is hard on the kidneys, and the Lamictal probably isn't helping things. I will get them tested (as well as a general blood panel) before I see my doctor again. I would imagine it wouldn't hurt matters too much if I were to stop the Famvir for a short period of time before starting the Valcyte, and also that (with the help of the HGH) my kidneys should repair themselves in relatively short order if relieved of their toxic stress.

    Three final symptoms have been diarrhea, mild headaches and (just today) a stuffy nose. Viral killing in the brain could be causing the headaches. I'm not sure what to make of the diarrhea or (since I feel certain I'm not catching a cold) stuffy nose. Perhaps this will become clearer later on.

    I really want to use the next two weeks to burn off as many viruses as I can. The following week I am going to see the doctor, which isn't a big deal but will take energy. The week after that I have to go to SF for a consulting presentation though, and that does concern me. Even under the best of circumstances, that is a strain. However, it cannot be helped. I may discontinue the Famvir for a short time then, or at least decrease it a lot. Some added hydrocortisol probably would decrease my own immune functioning, as well as give me a bit of extra energy. I will discuss all this with my doctor. It is only four days (one day there, two days presenting several hours per day, one day back), but some planning will be required.

    Anyway, since I want to burn off as many viruses as possible, I have decided to try some transfer factor to push up the process. (See my next post for an explanation of my understanding of how TF and AV's work together.) My doctor told me he thought that TF would be a good addition to the Famvir if I could tolerate it.

    I bought some Transfer Factor C several months ago, but realized this week that it was supposed to be refrigerated. (How could I have missed this? The letters on the bottle are in tiny type though.) The powder has sort of congealed, and so it seems logical that it would not be working. However, I have been periodically taking some, and I think it actually is making a difference in terms of the amount of feverishness I'm feeling. More feverishness is better, I believe. As long as I'm not getting worn out (which I'm not), I want this part to go as fast as possible.

    So I ordered some TF 560 from ProHealth today. We shall see how it works. (FYI: TF C targets EBV, HHV6b, CMV, lyme and chlamydia pnemoniae. TF 560 targets HHV6a and HHV6b, as well as CMV. Both should have benefits for me considering my previous test results, and so I might as well get some variety.)

    If indeed my immune system is starting to function again, I'm not sure how it's happening. One possibility (presented by my doctor) is that a virus has disabled my NKCs, and that now enough of it has been killed to restart the engines.

    An alternate possibility is related to the mcb stuff, suggesting that as the viral load decreases, enough glutathione becomes available to restart the methylation process on its own. I wrote a post to this effect a while back, which Rich Van K said seemed to make sense. I am going to put that in this thread too, for my own and others' consideration.

    One thing I will say about spending a lot of time in a dark room doing nothing is that I have become more conscientious about how I do use my time when I'm up. A larger amount than I would like is spent getting and eating food (important but fairly annoying), but I've been trying to put the rest of it to good use.

    So (after I find those old posts), back to resting. I do think that it's doing me good!!!

    Best, Lisa

    P.S. On another note, for the past several months I have been reading the blog of Sue Jackson, who briefly was on low-dose Valcyte with her PCP but just has started seeing Dr. Susan Levine in NYC.

    Sue reports that Dr. Levine is less inclined than she was a couple of months ago to start patients on Valcyte, and instead is recommending the following course for Sue: 1) and extended trial of Valtrex, 2) the addition of low-dose naltrexone and gammaglobulin to improve immune system, and 3) if necessary, replacement of Valtrex with Valcyte to finish off the job.

    This, of course, is my doctor's plan for me (except I'm using Famvir instead of Valtrex and he's not mentioned the naltrexone/gammaglobulin yet). Well, I've always thought that Dr. Levine would be my fallback if Dr. Guyer got run over by a bus, and this confirms it. It's nice that somebody else is using Dr. Guyer's strategy.....I did feel quite alone for a very long time on his approach here!

    [This Message was Edited on 05/18/2007]
  10. Slayadragon

    Slayadragon New Member

    Thanks for checking in on me!

    When's your appointment with Dr. Levine?

    Best, Lisa
  11. Slayadragon

    Slayadragon New Member

    I wrote this a while ago on another thread, but thought it would be good to save here since it's related to my current strategy.


    This is my brief metaphor for my understanding of how AV's (Valtrex/Famvir/Valcyte/etc.) and transfer factor work.

    Usually, herpes viruses (bad guys) hide out in apartments (regular cells of the body) where the police (T-cells) can't find them.

    AV's put locks on the doors of the apartments so that the bad guys can't hide in them. They thus are forced to spend their time out on the streets where they are easier to find.

    However, even when they're roaming the streets, the cops aren't necessarily going to kill them all right away. There are a lot of people out on the streets, and the cops don't know automatically which ones to arrest.

    Transfer factor is like giving the cops a "Most Wanted" sheet with photos of the bad guys on it. After looking at the photos, the cops can find the bad guys more easily and then try to arrest them (or, more specifically, gun them down since the bad guys do not go quietly into that good night).

    Note that the transfer factor and AV thus work synergistically.

    If the criminals have good hiding places, it doesn't help a whole lot if cops know what they look like. The bad guys do have to go out sometimes anyway, but they generally don't do it for long.

    On the other hand, if the cops don't know what the bad guys look like, the bad guys can survive pretty long without being caught even they have to live out on the streets.

    Based on this, it sounds at first like transfer factor and AV's always should be used together.

    My own experience is that the only problem is that it jacks up the fighting a whole lot. It's like the cops and the bad guys are having a huge ongoing war, with lots of shooting back and forth.

    After a little while, my body got worn out from all that fighting. I was having a hard enough time dealing with the bloodshed when cops happened to run into the bad guys coincidentally. I've got a lot bad guys in my body, and the Famvir seemed to be pretty effective at locking up their hiding places.

    If the cops feel obliged to kill every single bad guy they find (and since they're very conscientious they actually do), they don't get any time to go get donuts and rest. Rest is important.

    For someone on a lower dose of AV than their body can handle, progress may be slow. The cops thus may not have much to do with just the AV. If you're not getting a die-off reaction, you can guess that your cops aren't too overworked.

    In that case, maybe giving them a "Most Wanted" list would be helpful. There wouldn't be any additional bad guys on the streets as a result, but at least the cops would be really efficient at killing off the ones that were there.

    I'm not absolutely sure this is the right way to look at the situation. I made up the analogy myself, based on my understanding of how transfer factor and AV's work.

    I've not read or heard about many people taking transfer factors and AV's together, but my doctor said that it was fine to do so "if I could tolerate it." I've no reason to believe they would be less effective if used together, anyway.

    If you try TF and AV's together, you will want to get transfer factor that is targeted at the viruses you're trying to kill. Some products target EBV, for instance.

    Hopefully other people will chip in their thoughts if they have ideas about the topic. I don't think a lot of people have thought about this combination a lot, and so a discussion might be interesting.


    And this is related to the repeated board comment that "AV's don't kill viruses, they just stop them from replicating":

    As for the "prevents viruses from replicating".....that's true as far as it goes, but it's a little bit simplified. (I've read a lot about this and feel certain I've got it right insofar as anyone does. It may be that scientists themselves do not understand how AV's work---as they don't understand how SSRI's work---but that's something else.)

    In order to replicate, viruses enter cells of the human body. They then plug themselves into the cell and use the energy in order to replicate. After a while, all the replicated viruses (sometimes thousands from one cell) burst out, each trying to find a new cell.

    AV's keep viruses from hooking onto the cells. It thus is true that they cannot replicate.

    However, if a virus cannot hook onto a cell, it is "left hanging" (this is specific language from medical texts!). It thus desperately moves around the body trying to find another cell that it can hook onto.

    During the time that it is "swimming around" trying to find a new home, it can be seen by T-cells and B-cells. (Those immune cells cannot see herpes viruses when they are hiding and replicating, since herpes viruses keep infested cells from producing a protein that alerts T-cells and B-cells that they are in there. Natural Killer Cells would know by some sort of "magic" that the herpes viruses are hiding in cells, but unfortunately CFS patients have deactivated NK Cells.)

    As soon as T-cells and B-cells see those homeless viruses, they go after them.....as I describe in my analogy about the cops and the criminals. (The T-cells and B-cells are the cops, whereas the herpes viruses are the bad guys. I am leaving NK Cells out of the analogy, since they are disabled.)

    Hope this makes sense. It's not easy to explain succcinctly, which is why people get a bit confused about it.
  12. Slayadragon

    Slayadragon New Member

    This is a post I wrote to Rich Van K a while ago. I think it's relevant to my situation because it discusses how AV's could help the entire methylation cycle (and thus the immune system) come back online even without folate supplements. I'm not up to reading it at the moment (I really was on a roll the day I wrote it), but I'm going to put it here since it seems relevant to the stage I seem to be at in my recovery. He told me at the time I wrote it that he thought it basically made sense.

    My comments are in response to Rich's condensed explanation of why the mcb problem makes people sick.


    "First, a lot of stuff happens behind the scenes, due to a load of combined long-term stressors, which can be physical, chemical, biological, psychological/emotional, or any combination of those. These may seem like apples, oranges, bananas and grapefruit, but you can add them all together, because the nonspecific stress response systems respond similarly to all of them. So it's the total load that matters, and it has to be long-term, like, say, months or longer.

    "If this load of stressors is dumped on a person who has inherited any of several combinations of polymorphisms in certain genes, the result is that their glutathione becomes depleted after a while.

    "The depletion of glutathione allows the reactivation of viruses and intracellular bacteria that had been kept in latency by adequate glutathione. When they reactivate, the immune system detects them, and the T cells try to mount a cell-mediated immune response.

    "To do this, they need glutathione, so they grab glutathione and cysteine (the rate-limiting amino acid for making glutathione) from the blood.

    "This robs the supply to the skeletal muscles, and that allows the superoxide to rise in the muscle cells and shuts down their Krebs cycles. That causes the physical fatigue that hits at the same time the person becomes conscious of an immune response to a viral infection.

    "This is the first point at which the person realizes they are ill, but the plot has been hatching behind the scenes for quite some time before they become aware that anything is amiss.

    "So now there still isn't enough glutathione, and in particular there isn't enough glutathione to protect the B12 supply, as it normally does.

    "With low glutathione, toxins such as mercury build up. When they get high enough, they prevent formation of methylcobalamin, and that shuts down methionine synthase and the methylation cycle.

    "When that happens, the folate cycle, which is linked to it, goes down, too. That puts a monkey wrench into the formation of new RNA and DNA, so the T cells cannot proliferate.

    "Thus, the immune system now cannot defeat the viral infection for three reasons: First, glutathione is low. Second, it can't build an army of T cells, because the folate cycle is shut down. Third, there is now not enough methylation capacity to silence the viral DNA, so they are free to express their genes and make new virii.

    "So this develops into a guerilla war between the immune sytem and the viral infection. Neither side wins. That's what keeps the person sick. "


    FROM ME:

    Thanks for putting the explanation of the theory into such easy-to-understand language. While I don't yet understand the underlying mechanisms (e.g. why low glutathione causes viral reactivation), the downward spiral seems to make sense.

    (The experience of CFS sufferers suggest that this whole collapse can happen really quickly, doesn't it? Like within a couple of hours or days???)

    So now I'm trying to imagine what an upwards spiral would look like. It seems to me this could be accomplished at least one of two ways: either by repairing the methylation cycle or by getting viruses under control. Addressing toxins through means other than increased glutathione usage also might help, although I'm not certain how much.

    If you would, please see what you think.

    A. Repair Methylation Cycle

    1. Bring back folate cycle with folate supplements. (I'm a little foggy on why low B12 leads to decrease in folate cycle or how folate supplements fix it, but that doesn't matter in terms of the hypothesis.)

    2. Simultaneously increase the B12 supply through external supplementation. This causes the methylation cycle to go back online, insofar as external supplementation continues.

    3. The repair of the methylation cycle causes the body to use the glutathione it has more effectively. This usable glutathione then is funneled to wherever it is needed the most urgently. (The body is smart enough to allocate its resources--including glutathione--in a very effective way.)

    4. If viruses are a major problem, much of the increased glutathione immediately may be funneled to fight viruses. If toxins are a major problem, much of the increased glutathione may be funneled to eliminate toxins. If neither is a near-deadly problem (or if incapacitation is such that, say, the individual does not innately have enough energy even to gather food or run from wild animals), some of the glutathione may be funneled to Krebs cycle.

    5. Over time, the most urgent of these problems may be brought under control. As this happens, glutathione may be reallocated by the body. For instance, as viruses decrease to non-emergency levels, allocation to eliminating toxins or increasing energy might occur.

    6. This would explain why it is that different people have different initial and later reactions to the protocol.

    a) For instance, a patient with major toxin problems (but viruses that are not overwhelming) might experience rapid elimination of toxins. Detox symptoms might appear right away, as may improvements of symptoms caused by toxins. (Just to take a stab---brain fog? pain?) After a certain amount of detox is accomplished, glutathione may be used to increase Krebs cycle (with increased energy) or hit on the viruses that are present (maybe causing decreased energy or other immune-activation symptoms).

    b) Those with major viral problems may experience no major increase in energy or detoxification at first, since viral killing is more "silent." (Some signs of immune activation might occur.) Major detox could occur later (explaining why some patients don't experience severe detox symptoms until a month or later in the process). Similarly, especially for patients who already have sufficient energy to live (e.g. enough to run away from a tiger if necessary), increased energy might not occur for quite a while.

    c) Once viral and toxin problems are at least somewhat under control, Krebs cycle energy may start to increase. This may happen much sooner for patients who have fewer viral and toxin problems.

    7) Over time, all of these problems are repaired, and functioning goes back to normal. The amount of time that this is likely to take depends on the severity of the toxin and viral problems, as well as how much glutathione the individual has available. (Assumedly some CFS sufferers innately have even worse innate glutathione problems than others, and thus may take longer to recover since a limited amount of glutathione will be available even after folate/B12/etc. is added.) Your first comment is that stress siphons off glutathione too, which suggests that those individuals who are under stress during the recovery process might take longer to get everything back in working order.

    8) Assumedly the innate glutathione problem will still be there even after the individual seems totally well. Thus, taking measures to make sure that sufficient glutathione remains available to the individual even when under stress is important.

    9) I am uncertain whether the innate glutathione problem that you mention is due to deficits in the methylation cycle or other deficits related to glutathione creation. If the first, continuing to supplement with folate/B12/etc. throughout life would seem key. If the second, supplementation with glutathione itself might be sufficient or necessary. (Also if the second, pure glutathione supplementation along with the folate/B12/etc. supplements might be useful during the recovery process. As an example, Delia---who obviously has gotten very rapid improvement---has been supplementing with tons of glutathione every day since starting the folate/B12/etc. supplements, and reports feeling worse when she skips the supplemental glutathione.)


    This actually makes sense!

    Now, let's go backwards and see if I can make a case for why (as my own doctor and some others believe) it might be that attacking viruses can result in full long-term recoveries---using your theory.

    B. Use of Antiviral Drugs or Transfer Factors (or Other Anti-Viral Means)

    1. Viral activity is brought down to a low level through the use of antiviral drugs.

    2. With the viral emergency under control through external means, the body does not have to use every available bit of glutathione to fight viruses. It thus can use the relatively small amount of glutathione still available (and there must be _some_ glutathione still in the body even with the methylation cycle problem since CFS patients remain alive) for other things.

    3. A pressing need seems to be the manufacture of B12. This is used to repair the methylation cycle.

    4. With the methylation cycle repaired and the viral problem kept under control through external AV's, extra glutathione becomes available. This is divided (as necessary) between helping the AV's to keep viruses under control, clearing toxins and increasing energy (through facilitation of the Krebs cycle).

    5. As time goes on, the glutathione allows the immune system to become more and more functional. It thus allows the body to begin killing lots of viruses on its own, without the help of the antiviral(s). If the body can indeed get the immune system fully up and running, and enough time elapses for it to kill off all the viruses (some of which are likely resistant to the AV's), full health will be restored.

    6. The risk with this route is that AV's may not be powerful enough to keep the viruses under control while the methylation cycle comes back online and then gradually siphons enough glutathione to the immune system for a long enough period of time to get rid of the glutathione-sapping viruses. This could happen because a) the viral problem is so extreme that available AV's are not enough to keep them at low levels without using extremely toxic doses, b) significant numbers of viruses that are resistant to the AV exist (due to the fact that the AV does not have a wide enough spectrum to begin with and/or that viruses become resistent to it over time), or c) the antiviral is discontinued too early (allowing the viruses to begin to proliferate before sufficient glutathione is available to restore the immune system and thus keep them in check).

    7) Another potential problem (which will either slow down recovery or prevent it from occurring, depending on how well the AV's are working) is that the limited glutathione that is available may be sapped off into other channels rather than viral fighting. Specifically, since (as noted at the beginning of your comments), stress can suck up a lot of glutathione, making the total available for rebuilding the immune system during this crucial period of time lower.

    8) Glutathione "misallocation" also could be a problem. For instance, if toxic burden is great, the body may choose to funnel some of the glutathione into eliminating it even though in the long-run it would be better off going to the immune system. (The body is smart with regard to allocating its resources under natural conditions, but is not accustomed to the artificial introduction of viral killers. Thus, it may see the lack of viruses as an indication that the problem has been permanently solved and thus allocate the glutathione to what it mistakening is viewing as a more important problem.) Conceivably, the body might even misallocate too many resources to the Krebs cycle---e.g. not just getting the patient out of bed but allowing him/her to start climbing mountains even though the immune problem is not under control. Having previously gotten toxicity (including things the body mistakes as toxins such as food allergens) down as well as keeping activity levels and stress at a relatively low level can be important here, so that as much glutathione as possible is funneled to the immune system.

    9) If such misallocation occurs but viruses not killed by AV's climb steadily, glutathione may be allocated to the immune system accordingly, and in sufficient quantities that the infections are kept under control. (This could occur with gradual development of resistance to drugs, for example.) On the other hand, if viruses "explode" (as could occur with the sudden withdrawal of the drug), the body might not have enough glutathione to counter the sudden problem. While normal people could fight off such a viral invasion easily, CFS sufferers' innate glutathione problem (unaddressed under this scenario) may cause the cascade downward to partially or fully recur. Since stress saps away glutathione, a patient who is stressed at the same time that viruses begin to proliferate (due to the cessation of the help of the antiviral) may be especially likely to suffer this relapse.

    10) Since the innate glutathione problem has not been addressed under this scenario, there always is the danger that even if total recovery takes place, the cycle you describe could start over again. This would be a particular problem since AV's might not work as well during a second go-around, if resistance were established the first time. Thus, those who have recovered from CFS and not fixed their gluathione problem seem like they would do well to avoid high amounts of stress at all costs. Avoiding toxins also might be a good idea, since exposure to toxins would siphon off a lot of glutathione to toxin elimination and make it less available for viral killing. In addition, overexerting the body through exercise---thus using a too-large amount of glutathione through the Krebs cycle---could prevent enough glutathione to be available to keep viruses at bay. These are all things that people say "caused" their CFS to begin with, of course.

    C. Toxin Elimination Theory (For People with Innate Glutathione Problems)

    1. The cascade described (with all the steps leading to the destruction of the methylation/folate cycle) occurs.

    2. Toxic burden is decreased in whatever manner. Detoxification efforts continue over time. (Toxins seem to me likely to include things such as mercury, pesticides or other man-made chemicals, certain kinds of mold, etc. Things that the body mistakes as toxins--e.g. through autoimmune reactions--can count here too.)

    3. Methylcobalmin production is increased, and as a result the methylation/folate cycle starts to improve somewhat.

    4. However, since glutathione is an innate problem, viruses remain problematic. Dealing with them continues to suck up huge amounts of glutathione to keep under control.

    5. As a result, the body continues to have relatively little glutathione available to meet all its needs even though toxins are not absorbing as much of it as before. While more glutathione may go towards viral fighting (decreasing this problem) and to the Krebs cycle (giving more energy), the overall problem has not been repaired.

    6. As a result, the patient may improve significantly, especially if efforts to eliminate toxins are continued. However, insofar as this is all that is done and the patient has a relatively severe innate glutathione problem, it seems that full functioning will not be achieved since the viral problem will not have been fixed.

    D. Toxin Elimination Theory (For People Without Innate Glutathione Problems)

    1. It seems plausible that if enough toxins are present in the body, this cascade can occur even if no innate glutathione problem occurs.

    2. If a huge toxic burden is present, this may absorb huge amounts of glutathione---more than even a normal person can produce/use.

    3. Less glutathione thus would be available for other things. Krebs cycle energy production (desirable but not necessary for survival) would seem the first to go. If the toxic burden is sucking up enough glutathione, viruses also may start to proliferate.

    4. Again, if the toxic burden is great enough, B12 production may begin to slow, followed by at least a partial shutdown of the methylation/folate cycle.

    5. In this case though, the removal of the toxic burden may reverse the cascade in itself and get the patient back to normal. For instance, if the patient is removed from a moldy house, the glutathione eventually will get rid of the mold in the body. Then (since a larger amount of glutathione may be available), it is reallocated to fixing the methylation/folate cycle and wiping out viruses. Then the Krebs cycle comes back online and the patient gets well.

    6. Since there is not innate glutathione problem, there is no particular reason for the patient to relapse unless again undergoing severe toxic exposure. If this occurs, the mere removal of the toxin (sometimes easier said than done!) should fix the problem.

    7. A totally unproven hypothesis is that severe toxic accumulation might cause either fibro pain and/or cognitive problems. If the toxins are bad enough, energy decreases and conceivably even viral problems would result. Unfortunately it could be that some toxins are "sticky" and not easily cleared from the body (e.g. avoidance of the toxic source as may be the case with mold). In that case, extra glutathione could be helpful in removing the toxins. This could be supplied either through improving the methylation cycle or supplying glutathione directly. (I don't know enough about fibro to understand whether this works in practice, though.)


    Okay. So now--based on the information in your summary and my quickly drawn hypotheses--this gives us a wholistic theory about CFS causes and treatment approaches.

    Whether it is right or not, I don't know. However, it seems worth continuing on to see if any of these treatments might be improved upon, based on the theory developed.

    A. Repair Methylation Cycle

    The basic drawback of this approach is that it seems it would be slow. Increased glutathione is available, but it needs to be allocated to a variety of different uses. Especially if there are a lot of viruses, a lot of toxins, and/or a lot of stressors, it could be quite a while before this approach even starts to increase energy beyond a minimum amount (much less get the patient fully cured).

    Ways to speed up the process might include:

    1. Decrease viral numbers through other means, such as AV's. This will allow increased glutathione to more quickly finish off the rest of the viruses as well as address itself to other areas (toxicity, stress management, Krebs cycle) more quickly.

    2. Decrease toxic exposure to the extent possible. (I would think that toxins could include things like yeast die-off, btw.)

    3. Support Krebs cycle with supplements (e.g. CoQ 10 etc.). I believe this will allow more energy to be obtained from less glutathione, thus allowing more activity at the same time as viruses and toxins are eliminated. In addition, not pushing Krebs cycle (e.g. by overexercising etc.) might be desirable while recovery is occurring.

    4. Reduce stress as much as possible. Many of what I think of as "second-tier" and "third-tier" effects could be related to this. Yeast problems seem to be big stressors. Auto-immune responses (such as food allergies) could be viewed as either stressors or toxins, but in any case suck of glutathione. Avoiding such things as surgery or injuries during this time period might be advisable. Not getting enough sleep (and deep enough sleep) is stressful. Emotional stress obviously is bad. Working too hard (if work is started), especially at a stressful job, would seem potentially problematic. Etc. etc. (with regard to all the things that many people say preceded or accompany their CFS). Note that many of these things fit into Teitelbaum's summary of treatments that can help CFS patients. (Presumably this is at least in part because reducing stress on the body allows more of CFS patients' precious glutathione to be available for viral killing, toxin removal or energy utilization.) Not reducing stress may not preclude getting well if this approach is used, but it seems it might slow down the process.

    B. Use of Antiviral Drugs or Transfer Factors (or Other Anti-Viral Means)

    1. Reduce stressors as much as possible throughout the process, as described in the previous section.

    Note that my doctor views this as a crucial component in using AV's successfully. This allows most of the precious glutathione (still limited because the underlying deficit problem has not been addressed) to be directed to viral killing. His stress reducers include: getting the Teitelbaum stuff into shape before starting, avoiding the "heavy herxing" experienced by some patients taking large quantities of AV's, and providing stress reducers (such as adrenal and HGH supplementation) during the viral-killing process.

    2. Get the viral load way down fast and keep it down.

    This would allow less of the precious glutathione to be directed toward keeping the viruses under control. This would cause the upward spiral described above to occur. Make sure that viral load does not start increase again until the system is in shape to handle it (e.g. more glutathione is being produced) and that that the viral load does not zoom up fast.

    3. Increase glutathione available during the process through folate/methylation supplementation (and possible direct glutathione supplementation). This should allow more glutathione to be directed at the tasks at hand, thus allowing the immune system to come online faster. (This might speed up recovery, but even more importantly decrease viral resistance problems.)

    Note that if glutathione is diverted to detoxification and if detoxification is stressful, this could be contradictory to Helpful Possibility #1 in this section. It may be that care needs to be taken in deciding when and how quickly to supply glutathione at this point, so that detox doesn't cause problems with viral killing. Or measures in which detox can be made less stressful (whatever those might be) could be taken.

    4. Don't encourage the body to convert glutathione to Krebs cycle by overdoing it once energy becomes available. The goal is to keep as much as possible going toward viral killing. Using Krebs cycle enhancers (e.g. Myhill protocol) could be helpful in allowing the body to make the most of the glutathione it does direct toward outward energy expenditures.

    **As a side note, during the month I used the methyl cycle block supplements, I noted significant detox symptoms and mild physical energy increases (perhaps due to Krebs cycle kicking in?). I don't know how much of the glutathione went toward viral killing, but it is obvious that much of it did not.

    5. Once the patient has mostly recovered, use the folate/methylation supplements and/or direct glutathione supplementation to promote full recovery and prevent relapse. (Again, I'm not sure exactly how this should be done since I don't yet understand the innate problem with regard to glutathione that CFS sufferers have.)

    6. For patients with severe viral problems, using AV's may a necessary route since repairing the folate/methylation problem may never supply enough glutathione to kill all the viruses. If the viruses aren't killed (the theory suggests), the patient will never get fully well. Having a good sense of just how bad the viral problem is thus may be wise before starting treatment of a particular patient (since those patients with huge viral problems may experience little or no progress with the methyl cycle block/glutathione protocol, thus making it seem like the protocol is of no value to these patients and perhaps indeed precluding it from being effective).

    7. One apparently relevant question is whether patients with severe viral problems (and comparatively lower toxicity problems) should first attack the viruses, first start the methylation cycle supplements, or use both at the same time.

    a. If the methylation cycle block supplements are started first, most of the glutathione may be directed toward the pressing viral problem. However, if the newly available glutathione is not sufficient to get the viruses in check reasonably quickly (or to ever get them in check), that patient may not experience any subjective improvement for a long time (or may never experience it). This could be discouraging if nothing else.

    b. If both viral killing and glutathione usage repair is undertaken at the same time, it is possible that (as stated above) much of the glutathione may be misdirected at detoxification. If in combination with the viral killing this causes a good deal of stress on the body, an undesirable result may occur. In that case, delaying the glutathione usage repair until after the AV has done most of its work may be a better strategy. (Having a way to tell how much of the increased glutathione is going toward the killing of viruses compared to detoxification would be useful here.)

    c. If antivirals are used first, it may be possible to get the virus levels down to fairly low levels relatively quickly. The introduction at that point (as early as possible without causing undue stress) of the methyl cycle block/glutathione supplementation may then help the immune system to kick in and help lower the viruses further, as well as to address the toxins. The goal is to make sure that sufficient glutathione is available to keep the viruses in check as the AV is withdrawn. Hopefully, recovery will follow.

    8. If patients have very high amounts of both viruses and toxins, additional glutathione supplied to the body might be allocated to each. In that case, it might be wise to start with the glutathione-availability supplements, since at least some of this will go toward decreasing the toxic burden. Once the toxins are brought down to a reasonable level (and this may take a while), it then may be time to directly attack the viruses with an AV of some sort. (It is conceivable that the methylation block supplements might be briefly discontinued during this time, so that the patient does not get too exhausted from the combination of both viral killing and detox.)

    9. Understanding the relative extent of viral problems vs. toxin problems in a particular patient seems to be a key question, therefore. Ways in which to measure each of these problems should be used to every extent possible, in order to determine whether antivirals should precede the use of the methyl cycle block/glutathione support.

    C. Toxin Elimination Theory (For People with Innate Glutathione Problems)

    1. The addition of the folate/methylation supplements (as well as perhaps glutathione) should speed up the process considerably and make it more likely that a full recovery can be made.

    2. Reducing stressors on the body (thus allowing more glutathione to become available) is again a good thing.

    3. For patients with huge amounts of toxins, increasing usable glutathione to high levels may cause very rapid detoxification. If this happens and the body cannot dispose of it, it may be absorbed back into the system. Thus, it is important to support disposal organs of the body (e.g. liver, colon) as well as go moderately slowly (perhaps monitoring through tests).

    4. As always, minimizing stress (as above) will cause less glutathione to be sucked away and allow the process to go faster. Not encouraging a lot of the glutathione to go toward the Krebs cycle (e.g. by resting) and supporting the Krebs cycle with supplements (e.g. Myhill protocol) could be useful.

    5. A higher toxic load will cause recovery to come much slower. Provided that viral problems are not severe, increased functioning (especially reduction of any symptoms directly related to toxins) and then hopefully recovery may occur, but it may take a significant amount of time. A longer illness may be associated with increased toxic load due to lack of detoxificaton along the way, but external toxic exposure may be even more problematic.

    6. It is important to take steps to address the innate glutathione problem after recovery, since otherwise relapse (due to viral infestation or new toxin exposure) has the potential of recurring.

    D. Toxin Elimination Theory (For People Without Innate Glutathione Problems)

    The issues and strategies here seem likely to be the same as the ones with the innate glutathione problem. However, after recovery, these individuals should be able to remain well without continued supplementation (e.g. of folate/methylation supplements, additional glutathione, or whatever).


    Probably you (Rich) already have gone through all these issues. It would be nice to see how closely my logic matches your theory though, and also (if I'm at all on the right track) what parts of the puzzle I'm not yet understanding due to my lack of knowledge.

    I could ask dozens of questions at this point, but a couple seem to me especially salient:

    1) What is the innate glutathione problem that CFS sufferers have? Is it problems with methylation cycle (which are exacerbated by the spiral downward) or something else?

    2) You talk about T-cells using glutathione. However, it is my impression that although some CFS sufferers have problems with numbers or activation of T-cells, Natural Killer Cell activation seems to be much more key. Is this related to glutathione usage somehow?

    3) Why are herpes viruses a particular problem for CFS sufferers? (This ties back to the NKC activity, since herpes viruses seem to be mostly kept under control by NK Cells in normal people. An answer to the previous question may make the answer to this one obvious, therefore.)
  13. getwellgirl

    getwellgirl New Member

    Hi Lisa

    I am so glad you are up-to-date about your adrenals and the need for h/c or in my case 2.5mg Prednisolone plus 2.5 h/c if needed. It really can turn things around in hours if it is needed, its just so annoying that traditional doctors know nothing about a low dosage protocol or the fact that people with CFS have hypo adrenal function and would benefit from some medication, despite the studies that have shown this.

    With regard to the NADH I seem to be only able to tolerate 5mg with breakfast plus there is small bit in the Thorne's Basic Nutrients I take with each meal. It really does make a difference to my energy but can make me too hyper and then it will affect my sleep, hence me only being able to take the 5mg with breakfast. I have know added in 500 mg carnitine x 2 because this should also help plus the Q10.

    I am still going with the modified methylation support but think the high amount of betaine HCL I have to take with my meals cos of little stomach acid might be causing problems. I am waiting to hear from Rich if this is true.

    Good Luck with the anti-virals, I am going to ask Dr M next week if she thinks I might benefit or if she thinks its better for me to carry on with Cumanda and Samento.

    BTW Did you ever try Samento?

  14. harmony21

    harmony21 New Member

    guys for writing these long explanations etc, I would not be able to put it together and certainly cannot decipher it all either....Here in the land of downunder we havnt heard of these protocols and are doing very simple and conservative things, nothing like you guys
    I for one dont know where you get the energy from cause it makes me tired just trying to read it

    good luck to you all I will be watching with much eagerness

    love, hugs and healing light
  15. Daisys

    Daisys Member

    I don't often post to your threads, because I have no input or questions. So, I just want you to know that I'm learning a lot from keeping up with your progress.

    I'm really glad you're seeing results and getting a sense of moving thru the process. That sure feeds the motivation, doesn't it?

    I hope you don't mind if I copy your thoughts on different scenarios to give to my NP. I'd like her to see where I'm heading with questions, supplement decisions, etc.

    I'm chelating for lead and mercury currently. It's going to be a gradual thing (5 months), because the MD doesn't want it to be too hard on me. Since I've had this for 30 years, and am 55, I think he's being conservative with my treatment. So, hopefully, when that starts to clear out, I'll be able to see the 'next step' for me. I wonder if adding some of the 3rd Yasko protocol would be in order. Just starting to look into that.

    It sure would be wonderful to have this all figured out, wouldn't it? Anyway, thank you so much for your efforts to share as you go. It's been of invaluable help for me. This message board has been a life saver for me altogether with all the info sharing. Hopefully, I'll soon be on the other side and able to help others, in more ways than proclaiming the wonders of xyrem for those who can use it.
  16. bigmama2

    bigmama2 New Member

    I had my appt w dr levine last week - it was not what i was expecting! i'll write aobut it later tonight in another post- dont want to hijack yours.

  17. Slayadragon

    Slayadragon New Member

    Hi Pam,

    What kind of problems do you think the betaine hcl might be causing you? Are you taking the other supplements right now?

    I need to look up the cumanda and samento, since I know nothing about either. If you were to explain very briefly what they are, it would be very useful so that I can know if I should put more time into it.

    I can't remember what doctor you're seeing. Dr. M does not ring bells, but maybe my mind isn't working well right now.

    I was thinking that maybe we should write a thread with the title "Do You Have Low Blood Pressure?" and then discuss adrenal issues. A lot of people might find out they have problems that way. The stuff you wrote to me above might be a good start, if you want. Otherwise I'll do it eventually, when I get a bit more energy.

    Best, Lisa
  18. Slayadragon

    Slayadragon New Member

    Hi Connie,

    My thread this week is out of control, since it's got a compilation of stuff in it that's taken me six months to sort out in my own mind. It's not like I came up with it overnight or that I'd be able to understand it this week either!

    It does sound like the U.S. is further along with CFS treatments than other countries though. I would imagine that would change if anything becomes legitimate. I'm keeping my fingers crossed for Dr. Montoya's Valcyte study.

    Thanks for checking on me on this thread. I really appreciate it!

    Best, Lisa
  19. cherylsue

    cherylsue Member

    It's late and past my bedtime, but I just wanted to let you know I read part of your thread, but will try to continue reading it tomorrow. It looks like you posted quite a bit of good info, and I want to take my time to absorb it.

    I'll go ahead and email you so you can let Dr. Guo's office know you referred me. They can double check my form.

    Will write later.

  20. getwellgirl

    getwellgirl New Member

    Hi Lisa

    Dr M refers to Dr Myhill, a well-known CFS specialist here in the UK.

    The problems that I think I am experiencing might not be due to low stomach acid but might be a parasite problem. I am now going down that route with the help of a herbalist and I am taking black walnut, clove and wormwood tincture 3 times daily. Fingers crossed it does the trick because the feeling in my gut is horrible and it is also affecting my blood sugar badly and also my energy. I think this problem might well have been building for several months.

    I have just started to add a teaspoon or so of cider vinegar in water to take with my meals and some digestive enzymes too so hopefully I can cut right back on the HCL.

    It might be a good idea to start a thread on the low bp. Of course for some it will be the section of the adrenals that produce the mineralcorticoids that are the problem and they might well benefit from more salt and/or Florinef and not need the extra cortisol.

    This was never the main problem for me, mine was definitely related to low cortisolI guess because of all the stress I had encountered all my life. Its much easier for people to start taking a bit more salt and see if that helps their bp and how they feel. This is especially important of course in the summer months when I do add a bit more salt especially when I have been out for a walk with my dog. However if I add more salt in the winter it pushes my bp up too high.

    The most complicated scenario is when the adrenal medulla part of the adrenals is unaffected by the illness and throws out too much adrenaline but the adrenal cortex is badly affected and cannot produce the cortisol to balance it. This will happen when there is far too much stress around in somebody's life and it is very damaging. Its a horrible symptoms one feels so wired yet so tired to do anything. This is when extra cortisol can really help.

    Hope I haven't gone on too much!