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Neural therapy, Toxic Mold, Mike Dessin and Me

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by Cort, Sep 8, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    Moved From A New Day Group to Get More Circulation

    From slayadragon
    Hi All,

    Ive been having some e-mail conversations with Mike Dessin about the role of toxic mold in his illness and recovery, as well as the role of energetic medicine similar to the sort that Mike has pursued in my own recovery.

    I thought Id summarize those conversations here.

    Mike, obviously if Ive misstated anything or if you have anything to add, Id greatly appreciate your comments!

    In reading Mikes bio a few weeks ago, I noted that he had changed residences a number of times since getting really ill.

    His bio also suggested that later declines happened concurrently with some of his subsequent moves.

    Its my observation that in some cases, merely moving away from a residence contaminated with toxic mold and putting aside all of the contaminated belongings from that residence can move CFS sufferers in the direction of improved health.

    Usually this isnt enough in itself to lead to true wellness for CFS patients. However, Im starting to think that combined with other treatments (especially those related to detoxification, viral problems or immune support), moderate mold avoidance may be enough to to effect real improvements or even a recovery.

    As I suspected, Mike stated that toxic mold did indeed play a major role in his illness.

    He stated that a severe black mold (stachybotrys) problem was found in his home in southern California at the same time that his CFS began.

    Mike also stated that his health had been problematic prior to this incident, and that the mold thus seemed to him to be the last straw rather than the sole cause of the disease.

    This is consistent with what I and others who have successfully addressed CFS through toxic mold avoidance have experienced. I personally tend to think that CFS sufferers have had numerous exposures to various chemicals/metals and to toxic mold throughout their lives, and that exposure to a particularly moldy home or workplace can push those who are wavering over the edge into true CFS.

    Mike says that upon finding that his residence had a toxic mold problem, he immediately moved out and discarded almost all of his stuff. He then began the odyssey described in his bio, living in a variety of residences in different parts of the country.

    Finally he ended up in a home in Ohio that he says is good with regard to both chemicals and toxic mold.

    Let me add here that my own observations suggest that large chunks of California (where Mike got sick and spent some of his time after getting ill) are quite bad with regard to the presence of particularly nasty strains of toxic mold in the outside air. There are some parts of California (e.g. some remote desert areas) that are very good, but they seem to be exceptions. Insofar as toxic mold is (as hypothesized) a key underlying cause of CFS, the high rate and severity of CFS cases in that state are consistent with my and others observations regarding the mold levels there.

    Conversely, its my observation that the Midwest tends to be more moderate in terms of outdoor toxic mold levels. This is consistent with the apparent lower number of CFS cases (and in many cases somewhat milder symptoms) in that area.

    Mike stated that though he felt good when next to the ocean, he tended to feel worse in California than elsewhere. (My observation is that beaches tend to be great in terms of toxic mold, possibly due to the toxins being easily blown out to sea and/or the presence of negative ions.)

    Mike stated that it took him a year in his current residence before he started to feel better, and that his improved wellness seemed due to the neural therapy he received.

    This also is entirely consistent with my own experiences and observations with regard to toxic mold, other toxins and various detoxification treatments.

    Rarely do people with CFS experience immediate improvements upon moving to an environment low in toxic mold. The toxins present in the body as well as the downstream effects continue to take a toll. It is not until effective detoxification (of whatever sort) is achieved that improved wellness occurs.

    Im especially interested in MIkes experiences because of my own history with neural therapy treatments. 

I received neural therapy from Dr. Dale Guyer in Indianapolis for a number of years throughout my illness, prior to my learning that my house had a toxic mold problem. He administered them with a homeopathic solution added to the procaine. My belief is that hes quite skilled at the technique, and I would recommend him highly.

    I found neural therapy to be one of the more helpful treatments that I received. In retrospect, I think it was the only treatment I found helpful that addressed what I believe to be one of the direct causes of my illness (e.g. toxins or viruses). Other treatments I pursued also were somewhat helpful, but its now my belief that the things that they addressed (e.g. candida, food allergies, sleep, hormone problems) were downstream from the core causal factors.

    Neural therapy certainly was not enough to bring me anywhere near full wellness when I was living in my moldy home. However, it was helpful enough that I am quite inclined to believe Mikes assertion that it was responsible for his own recovery.

    I described my experiences with neural therapy to Mike. He stated that my experiences were similar to his, bringing up the concept of flash points. (I dont know if hes discussed that here; if not, we should.)

    About 18 months ago, I discovered the toxic mold problem in my home. I was very ill at this point, spending 18-22 hours comatose in bed and rarely leaving the house. (My illness was clearly classic CFS/ME: my results on more than 100 tests over a dozen years were as expected, I would have qualified for Dr. Montoyas Valcyte study, my case history had the killer flu, I had nearly every symptom attributed to the disease, and my responses to a very wide variety of treatments were consistently as expected.)

    Like Mike, I immediately moved out of my moldy house and put aside all my stuff. I made a special effort to seek out non-moldy environments and made a modest amount of progress.

    About a year ago, I spent some time in the godforsaken wilderness. This allowed me to become sensitive enough to toxic mold to start to be able to immediately identify even small amounts of toxic mold in the environment (including in the outside air, on objects and in buildings). I then proceeded to make a concerted effort to get away from these sources of mold as I encountered them.

    Almost immediately, I moved to almost full recovery. Likely this would not have happened had I not been doing moderate avoidance prior to my stay in the wilderness, but it was remarkable how fast the improvement occurred.

    Having to avoid mold so scrupulously is a pain, no doubt! I thus have been focusing on intensive detoxification treatments with the goal of needing to be less careful.

    What Ive found is that my body does not easily shed toxins unless I am in a place that is very clear of toxic mold. Ive thus spent a lot of time in Death Valley and other areas that have low amounts of mold.

    While in these good locations, Ive taken a whole lot of cholestyramine (a prescription drug that Dr. Ritchie Shoemaker believes removes mold toxin from the body). I also have continued Rich van Konynenbergs protocol.

    The thing that I have found particularly interesting (and relevant to Mikes experiences) is that when Im in a really mold-free environment and taking cholestyramine, my body automatically goes into the exact same reactions that it did when I was getting neural therapy. 

(I hesitate to describe these reactions because they sound pretty hocus-pocus, but theyre so much in keeping with my neural therapy experience that I will do so anyway.)

    What I am finding is that I spontaneously get what feels like energy buildups in my trigger points. The trigger points get tender and swollen. By focusing my attention just a little bit on a particular point and pulling the energy toward it, I get what feels like a sudden release. I experience full-body convulsions that feel centered on that particular trigger point. As this happens, the trigger point hurts a bit (sometimes a lot!). The pain dissipates as the convulsions cease. At that point, the apparent energy blockage moves to another point, and I automatically focus on it. I repeat the process until I get exhausted.

    If I do this for a while during a session, I feel quite dizzy and toxic and worn out. Over time, Ive done this with hundreds of points on my body. Its been hard work, but it seems to be paying off.

    Since I started this about six months ago, my ability to be around toxic mold has gone up substantially. I still am bothered a lot when I hit my limit in terms of mold exposures, but Im needing to worry about it less and less. Hopefully further detox will allow me to tolerate even more toxic mold and thus to lead a mostly or wholly normal life.

    In terms of my health when Im not around too much toxic mold, Im about at the level that Mike seems to be reporting. My ability to do physical exercise is terrific. Every single one of my CFS symptoms has disappeared. My alcohol intolerance has wholly disappeared. My hormones (I used to supplement almost a dozen different ones) are perfectly fine. My sleep is great. My brain fog is gone. I used to take dozens of supplements just to keep afloat; now I only take large amounts of Vitamin C (which appears to be detoxifying and also helps the cholestyramine to move through my system) and some of the ones Rich suggests (B12, activated folate, phos serine). All the others seem to have become wholly unnecessary.

    As is the case with Mike, my cognitive function has improved but not returned to where it was prior to getting sick. In particular, my input/output (e.g. reading and writing) and task-switching abilities are still lower than they were when I was getting my Ph.D. and doing academic research. My hope is that with further detox and time, my brain will slowly go back to where it used to be. I certainly can live a satisfactory life at the level Im at, but being able to get in all ways to my pre-illness level would be a real accomplishment!

    Mike and I agree that our treatment approaches have been extremely similar. Weve both made strong efforts to avoid toxic mold as well as excessive chemical exposures. Weve both focused strongly on detox, and in particular energetic detox. Weve both been effectively addressing mold (him in his current house, me in various places) for about 18 months, and weve each been pursuing the energetic detox for about the same length of time. And weve ended up at almost exactly the same place in terms of our health.

    The difference is that while Ive leaned more toward mold avoidance, hes leaned more toward systematic energetic treatment. This seems to be a minor detail rather than a core difference in approach though.

    (At some point I will go back to Dr. Guyer and give neural therapy a try again, just to see how I respond to it in conjunction with mold avoidance. What Ive been doing is extremely powerful in itself, but I would imagine that the neural therapy would be even more effective.)

    I agree with Mike that it may be possible to achieve wellness through neural therapy even if an individual is living in a somewhat moldy environment (inside or outside). Insofar as the neural therapy is particularly efficient at removing mold toxins (or the negative energetic effects of mold toxins) from the body, this makes theoretical sense.

    My experience, and that of others, suggests that mere avoidance (insofar as its particularly stringent) also can be effective at allowing wellness to be achieved.

    However, the amount of neural therapy required to overcome substantial current exposures of toxic mold seems like it might be quite high. And certainly, the amount of mold avoidance needed to get a CFS sufferer well is (in my own experience ad that of others) quite difficult and life-limiting.

    Combining the two approaches, as Mike and I have both done, thus seems like it may be a better choice.

    I bring all this up in the context of a) the recent decisions of a number of CFS sufferers to try neural therapy and b) the comments Ive gotten from a number of people that the fact that Mike has gotten well through neural therapy means that addressing toxic mold isnt necessarily something that CFS sufferers need to do in order to move toward recovery.

    The idea that CFS has subgroups is one that is frequently floated in these conversations. This idea of subgroups seems to me to be a somewhat dangerous one, in that it has the potential of causing us to inappropriately dismiss approaches that have been key in CFS sufferers recoveries as irrelevant to our own cases.

    Ive yet to see any evidence that seems even modestly convincing that such subgroups exist. Rather, my observation is that every single real CFS/ME (as opposed to mere fatigue!) patient has the exact same constellation of problems: herpes family viruses, Lyme, general toxicity, mold toxicity, and various other problems that seem to be more downstream. Insofar as this is the case, it seems reasonable to proceed under the tentative assumption that all CFS patients have the potential of benefiting from the same sorts of therapies.

    (The role of toxic mold has been overlooked until recently, due in part to the fact that it can hide really well in buildings and needs to be present only in very small amounts to have huge effects on CFS sufferers. Tests developed by Dr. Ritchie Shoemaker now show that CFS sufferers almost invariably exhibit patterns of test results that signify serious mold illness as well as genes predisposing them toward this illness, however.)

    More to the point on this board, insofar as individuals with CFS are pursuing neural therapy without first having addressed toxic mold, they are not following the path that Mike followed.

    It disturbs me to think that these folks might be setting themselves up for disappointment when, with some extra effort, they might have been able to achieve Mikes results. It is even more problematic to think that the efficacy of neural therapy might be dismissed as a result of such failures, and that the potential role of toxic mold in this illness might continue to be overlooked.

    
I thus thought it appropriate to bring my discussions with Mike to the attention of this group.

    Again, Mike, any comments you have would be great.


    Best,

    
Lisa
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    09-02-2009 07:43 PMMichael Dessin

    Great Great stuff!! I just got done writing a somewhat long post below, I really want to comment on this. Will do in a day or two.

    Particularly interesting--Can these treatments in them selves, heal while we have continued exposure????

    Lets go beyond mold exposure!! Mold, mercury , pesticides.....all of it!

    Can continuous exposures to any of these, be enough to block the effectiveness of energy therapy and other treatments?

    I want to get some input from my doc tomorrow on this.

    Thanks for posting Lisa
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    09-04-2009 08:27 AMslayadragon

    Mike,

    Do you have the feeling that the neural therapy is working on toxins such as mercury as well as mold toxins?

    The reason that I ask is that when I've gotten chelation, my symptoms are significantly different that the ones I get with the energetics.

    The chelation causes much more headaches, for example.

    I've found the same thing with brown seaweed (aka Modifilan and Limu).

    Dr. Mary Beth Short-Ray claims that this supplement helps with mold illness, but in discussions has presented no evidence that it's working on this rather than on "regular" toxins (that go through the methylation cycle).

    Brown seaweed has been shown to remove metals, and this is consistent with my finding that it's similar to chelation in its effects.

    I've focused primarily on cholestyramine/energetics thus far. Too much chelation or brown seaweed (especially if I combine it with saunas) is pretty painful.

    But I'm wondering....do you think that maybe our failure thus far to obtain full cognitive recovery could be due to our not having adequately addressed mercury?

    In which case, merely waiting for the brain to repair itself may not be enough.

    A couple of doctors (Dr. Shoemaker and Dr. Guyer) also suggest that mold reactivity can go down as a result of chelation. This is consistent with the idea that total toxic load can affect our susceptibility to being harmed by all kinds of toxins.

    I've been doing Rich van K's protocol for two years. But I get the feeling from his comments that it's less able to remove mercury from the brain than from other parts of the body.

    I don't know how well chelation and brown seaweed address mercury (and other metals/toxins) in the brain, but it seems plausible.

    I think I'm going to cautiously try the brown seaweed (and maybe the chelation when I can get it) and see what happens.

    Do you (or others) have any thoughts?

    Best, Lisa
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    09-04-2009 09:23 AM jenbooks


    I would like to see toxic mold discussed on the main board, not on the group to follow Mike's doc's protocol. Here the posts generally are about his protocol or other docs learning/doing similar protocols. Unless Mike's doc agrees mold avoidance is part of his protocol, it seems this should go under the treatment section on the main board. Just my opinion, so this group stays focussed.
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  2. Cort

    Cort Phoenix Rising Founder

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    09-04-2009 10:36 AMdannybex


    Hi Lisa,

    Fascinating post. A couple questions/comments:

    I know that Shoemaker uses cholestramyne (sp!), but have you ever asked him about activated charcoal? Just wondering, as it seems like the drug pulls out fats too and can have some nasty side effects...

    Interesting comments too about all the subgroups. I tend to agree...having so many labels can really cause confusion, perhaps to the point of stifling treatment options. Having said that however, your case, and Mike's, and I think many others that may have initially been labeled as 'sudden onset' may in fact be something I like to call "gradually sudden" (as you noted that Mike's health had been iffy, and that the mold was perhaps the thing that finally caused the crash. This is consistent with Dr. David Buscher's theory of CFS/MCS/Fibro...many different possible (and sometimes hidden) 'stressors' until the body/immune system just can't handle them all, and boom...CFS.

    Re Energetic medicine/MCS, and avoidance: I know a woman (wife of someone quite well known in the CFS community), who was sick for about 17 years or so. She improved with vitamin d and related supplements, hypercoagulation issues, but had plateaued at about 70% and was kind of stuck there for a few years. And the worst part of it was her MCS...she was almost completely housebound because of it.

    But then she started trying things like Reiki and EFT, which helped get her to 75-80%-ish, but it wasn't until she tried something called 'Bodytalk', (which I know, sounds like something Suzanne Somers would sell on QVC), that she began to improve. Has something to do with balancing the chakras.

    Anyway, I'm not sure how many sessions she had or precisely how long it took, but eventually her MCS was so improved that one night she came home reeking of perfume (according to her husband), but was so unaffected by it she didn't even realize it.

    And ironically, during this period, her husband was building a 'mcs-safe' home. Months before it was finished, her MCS was gone, and remains gone. She still apparently has some lower back pain issues, but aside from that, considers herself about 95% well.

    I'm not recommending Bodytalk...haven't been able to try it myself...but just thought I'd mention her story.

    Very interesting comments about 'energy buildups' in the trigger points Lisa. Made me think of Gupta's comment about symptoms in one of his relaxation CD's. At one point he says to 'just ignore them for now' (the symptoms)...'they're just trapped energy'.

    ???

    Finally, re mercury and seaweeds, etc: I'm kind of paranoid about seaweeds after developing arsenic poisoning a few months back. I didn't test the supplement, but my arsenic symptoms came on after taking a kelp supplement for 2 weeks...something I had never taken before, and something associated with high arsenic contamination.

    I don't know if you've heard of Andrew Cutler PhD, but he says that alpha lipoic acid (ALA) is the only compound that can move mercury and other heavy metals from the brain, and has a protocol (which he claims is the safest...he's very outspoken!) where one takes small doses of ALA every three hours for three days on, one week off. Apparently ALA has a very short half life, hence the need to take it every 3 hours. A google search will turn up a lot more info.

    Thanks Lisa,

    Dan
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    09-04-2009 01:19 PMslayadragon

    Hi Dan,

    Dr. Shoemaker says on his Web site that he has not found activated charcoal to work.

    He says hes treated 4000 patients with mold illness, so he does have a large sample size.

    Its my tentative belief that gradual sudden onset may be the rule rather than the exception with regard to CFS.

    It seems to me that cognition and emotional issues (and in some cases things like asthma) tend to be the precursors, with physical issues and the weird stuff that we experience following the killer flu.

    My own cognitive decline started about 18 months before I got that flu. During that summer (1994), I got a series of three Hepatitis B vaccines. Undoubtedly they were loaded with mercury.

    Ive heard other CFS patients (including some diagnosed with the disease by Dr. Peterson or Dr. Cheney) state that vaccines marked a real change in their health as well.

    Mold toxicity is known to affect the emotions more than it does anything else. Even those people who are overall normal can experience mood declines or other mood symptoms when exposed on a short-term basis to a really moldy environment.

    Insofar as CFS patients have had multiple mold exposures during their lives, it wouldnt be surprising to find that mood issues were precursors to their CFS as well.

    This, I think, is responsible for the continued assertions of some researchers and officials that CFS is caused by emotional issues. They look at CFS patients histories and note mood issues, and then attribute the illness to emotional problems.

    What seems more likely to be happening is that the emotional problems as well as the CFS are both being caused by a third variable. My suspicion here is toxic mold, but there could be other toxins affecting mood as well. I have found that insofar as Im avoiding mold, my emotional state tends to be quite good. A big mold hit, on the other hand, can propel me suddenly into depression, irritability, panic, insecurity or other undesirable states.

    Something additional seems to be happening with the killer flu. My suspicion is that its the acquisition of a pathogen (such as HHV6a) that wrecks all kinds of general havoc. But it could be something else as well, like maybe a particularly nasty strain of mold. Or a combination of these.

    Ive yet to look at all the emotional techniques that you mention, but I do believe strongly that the energy congestion has an emotional component tied up in it.

    Ive found that the variant of neural therapy that Ive been doing on my own is powerful in general. But its much more powerful if I focus on particular emotional issues that are currently bothersome to me.

    While the release is going on, the emotions become stronger. Then afterwards, they lose their potency. Theyre still concerns, but Im able to deal with them more comfortably rather than feeling upset or blocked.

    I didnt do this when I was getting actual neural therapy treatments, in large part because interacting with the doctor during the session was distracting. This is one reason that what Im doing seems especially useful for me, though probably a mix of both kinds would be even better.

    Note, again, that I do not believe that the emotions are what are causing the blockages. I believe that the toxins are causing the emotions to be stopped up. Whether thats the principle of EFT or the other techniques, I dont know.

    Another experience I had a while back was with constitutional homeopathy (rather than homeopathy administered in conjunction with neural therapy).

    Constitutional homeopathy goes under the belief that there are different types of people, each of which benefit from different types of remedies.

    The one that ended up being effective for me was Natrum Muriaticum. This is supposed to be effective for people with repressed or stopped up emotions. Certainly I wasnt thinking this at the time, but that seems to me to be the same phenomenon that I discuss above (and that may be related to toxic mold and other toxins).

    As a side note, one respected homeopathy practitioner stated that by far the most prevalent type in England is Nat Mur. The stereotype of the English, of course, is that theyre repressed. More interesting to me is that both CFS/ME and mold illness are extremely common in that country.

    I was using the little pellets at a high potency (10M). This is actually very dilute....homeopathy works backwards. And I used the remedy infrequently, which also is supposed to add to its potency.

    Shortly after I took a dose, I would get a sort of congestion of what I thought of a emotional garbage in my abdomen. This would move up to my sternum, with the main trigger point (sea of chi) feeling swollen and painful.

    Then the energy would break up and Id have an emotional meltdown. (My husband called this remedy an emotional bomb.) Id cry and focus on emotional issues (mostly boring ones like I have so much that I need to do and no one will help me.) After a short period of time, the emotions would calm down. Then my gall bladder would gurgle. And then Id feel really good.

    I thought at the time that I was releasing just emotional garbage. Now its clear to me that it was actual garbage (toxins) as well.

    An interesting point is that Nat Mur is comprised solely of a extraordinarily dilute solution of salt. This makes no sense on the surface. But salt certainly is related to energy/electricity, and electricity is strongly related to emotions (e.g. electroconvulsive therapy and anticonvulsants have an effect on emotions). And mold is strongly related to electricity as well (with static shocks being a key symptom of mold illness).

    How this all ties together, Im not absolutely sure. But considering that just about everyone that Ive encountered in the past has been absolutely baffled whenever I talk about this stuff, its kind of a relief to do so here!

    Thats a good point about the brown seaweed. I certainly wouldnt want to add metals from a supplement that had the supposed task of removing them!

    Im going to look at Modifilan et al to see what kind of guarantees they have regarding purity.

    I hadnt thought about ALA for a long time, but thats an interesting notion too. Im going to be talking with Dr. Guyer next week, and Ill ask him about it then.

    Thanks for your interesting comments!

    Best, Lisa
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    09-04-2009 01:30 PMWayne


    Lisa, good to see you here posting on your experiences. I always appreciate you sharing the many things you've learned. It feels very generous that you take the time and effort to post with such detail.

    There's a number of things I would like to comment on, but I think I've only got the energy for one thing at the moment; namely, mercury. I've been concerned about mercury for many years. Even though I've had my amalgam fillings removed several years ago, my understanding is that mercury can remain "sequestered" in gum tissue for years afterward.

    To me, being extremely sensitive to metals of all kinds, sequestered mercury in my gum tissue was just too uncomfortably close to my brain. So part of my overall detoxification regime is to do the "oil pulling" technique for about 20 minutes, and follow it with another 20 minutes of holding a bentonite clay solution in my mouth. I can't say whether it is working or not, but it is extremely inexpensive, and my gut feeling is that it is continually and gradually reducing my heavy metal load. Besides that, I almost always feel better after having done it, which I do several times a week.

    I first learned a lot about clay being able to draw heavy metals out of the body on a website called evenbetter.com. There's some great information there on detoxification, and how clay foot baths (which I also do), FIR saunas, and other methods can reverse many chronic neurological conditions that are due to toxicity. CherlSue over at PH once posted how she could see the "silvery" mercury at the bottom of her tub after having done a clay foot bath.

    Thanks again for all your postings. I always appreciate watching how you continually attempt to pull so many diverse perspectives into a cohesive, overarching understanding. BTW, I think Jen had a good idea about perhaps posting some of this information on the main board where it could be helpful and more available to other readers here.

    Also, BTW, I feel my regular (about every other day) FIR saunas are continuing to do very well for me. I feel these saunas are starting to improve my cognitive function somewhat, which may be due to mercury being sweated out of my body. I think it's notable that this is occurring during a time of having gone through a difficult ordeal with two toxic dental appointments.

    All the Best, Wayne
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    09-04-2009 02:19 PMdmholmes

    The mold issue is very interesting. How does one go about determining if they have a mold issue? And how do you determine if your environment, home or office, has mold?

    Thanks,
    David
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    09-04-2009 05:26 PMMichael Dessin

    I agree with Jenbooks, Lisa can you post this on the treatments section. Not because I'm worried you will steal any thunder from me. Mainly because like I mentioned earlier to Mojoey, there is a much bigger audience on the forum as opposed to the New Day group alone, who can learn from your experience. Of course you can go any route you prefer.

    If you email Cort directly, he will copy all that has been posted on this thread over to the treatments section, to make it easier for us.

    We are all very interested in your post!!

    In a quick reply to mercury and mold detox with Neural Therapy. Neural Therpay does detox mercury and mold.

    HOWEVER!! I think the one huge differnce were looking at. Is that Neural Therapy induces body detox.

    Chelation with seaweed/DMSA and many others are used to lift the toxins out.

    A little food for thought there?? What would work better, safer and so forth.

    Also, in regard to Dan's comments in regard to gradual or sudden onset.

    Great question...I would have to say mine would be considered gradual.

    ALTHOUGH!! All cases of ME/CFS are acute, occuring on that one day of initial onset.

    The symptoms from that intial onset can vary dramatically, for some, not even knowing they are sick to others being bedridden for the remainder of their life.

    The later, those becoming very ill right after onset, would be considered sudden onset. Doc beleives about 10% of ME/CFS sufferes fall into the sudden onset category.

    Look forward to more conversation...and discussing if we must avoid long term exposure to get well, regardless of the treatment!!

    Mike
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    09-04-2009 08:17 PMLisa

    Hello Lisa (feels like I'm talking to myself here! lol)

    Don't have much time now, but wanted to comment on the energy in your trigger points that you were describing. I've started doing EFT on a daily basis this last month and have felt a very similar sensation to what you were describing when I am working on big stuff and moving a lot of energy. Sort of a full feeling in those spots and then just have to really shake it out of that area because otherwise it feels rather uncomfortable for a while. Like my muscle wants to be moved, almost has the electrical current to do the movement but then just sits at that spot till I move it a fair bit myself.

    Ok, gotta go. But wanted get this post done really fast.

    Take care!
    Lisa
  3. Cort

    Cort Phoenix Rising Founder

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    Michael Dessin

    Lisa

    I get those same sensations. Energy blocks and releases create those. Usually when a block is corrected it will create another block elsewhere, a new weaker area, than you hit that area and so on!

    called flash responses
    Mike
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    09-05-2009 07:32 AM jenbooks

    Thanks--Mike--I agree we should try to keep your group to your doc's protocol and related topics. I would like to figure out if I can bookmark your page as right now I click on "community" then click "social groups" then click "new day" and then get to this group. I wonder if there is an easier way. I also agree that even though the 2nd patient is mainly toxic as opposed to classic pathogen-induced...that it is relevant to us anyway as we all cannot detox either...
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    09-05-2009 08:05 AM richvank

    Lisa (Slayadragon)

    I just listened to the DVD of Dr. Klinghardt's talk at the recent Lyme-Induced Autism conference. He has revised his metal detox protocol, so that the first thing he uses now is MicroSilica from Biopure:

    http://stores.homestead.com/BiopureH...tail.bok?no=73.

    This is silicon dioxide with a very small particle size (basically, very fine sand), bound to sulfhydryl groups, which in turn bind metals including mercury. He says this one is better than all the rest. He adds several other things, also, which I think are described on his website (such as glutathione percursors, special forms of chlorella and cilantro, and others). In the talk, but not in the slides, he added that incorporating Boyd Haley's OSR#1 is a powerful thing to do, but that it should be done after the MicroSilica has had a chance to take out quite a bit of the mercury.

    Rich
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    09-05-2009 12:08 PMtahoma

    Hi Lisa:

    Good to see you here. This is zip from ProHealth, now Tahoma.

    I've just been prescribed the microsilica. I haven't started yet, but can report if you are interested.

    By the way, have you recovered your correct metabolism since you've recovered?

    One of the things that upsets me the most about this illness is losing all my muscle and gaining all this fluff.

    Tahoma
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    09-05-2009 12:38 PMm0joey
    Hey Lisa,

    Good to see you here. Haven't talked to you in awhile.. I have the same handle from PH Speaking of subgroups, I recall there was a classic CFS symptom which you didn't have? Was it postexertional malaise?

    best,
    joey
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    09-05-2009 11:39 PMtahoma
    Hey slaya,

    Just after reading your post about the microsilica, I was surfing the web about something completely different and came across a product I saw years ago that is promoted for treating candida. It's called Syclovir, and when I read the ingredients... micro silica.

    tahoma
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    Yesterday 10:14 AMslayadragon

    Hi All,

    Wow, what a delightful welcome!

    I agree that a lot of the topics that people have brought up would do well to be discussed on the main board.

    At present, I’m working on a comprehensive biography describing the history of my illness and recovery. I’m inclined to finish that as a “base” for talking about my own experiences and thoughts as time goes on.

    Hopefully if I focus on that, I can get it done soon and then engage in discussions on the main board.

    However, I would like to discuss a bit further here the one topic that I think is essential with regard to evaluating Mike’s experience and that of those who are attempting to follow in his footsteps: that of subgroups.

    I recently went through “Osler’s Web” by Hillary Johnson and made a list of all the symptoms mentioned.

    (“OW” details the history of the first 10 years of CFS, starting in 1985 with the epidemic in Incline Village/Lake Tahoe.)

I found that I had nearly all the symptoms mentioned in the book. Some of them were present only during certain points in my illness, but most of them were constant.

    Post-exertional malaise was a problem throughout. I also gained about 40 pounds, most of which came off during the six months after moving out of my moldy house and pursuing “moderate avoidance.” (This, btw, was without substantial increase in exercise---that came later---or changes in diet. In fact, due to the fact that I no longer had a candida problem, I started eating a nice dessert almost every day. Making up for lost time!)

    More to the point, though, I don’t think that the fact that some CFS sufferers have somewhat different symptoms than others provides any even slightly convincing argument that subgroups are relevant to understanding this disease.

    It is a rare disease that presents with exactly the same symptoms in all sufferers at all stages. This is especially true of diseases (like AIDS) that involve an immune component that allows various pathogens to establish themselves. Various species and strains of toxic mold also have the potential of causing differing symptoms.

    Considering these factors, what is surprising is the extent to which CFS (in terms of test results and symptoms) presents with as much consistency across patients as it does!

    The other thing that I think that is necessary to reiterate is my increasing belief that all the core underlying factors (aka “causes”) of CFS work together in a synergistic fashion.

    Address one of them and you may get some improvements (in most cases with great difficulty). Address all of them concurrently (or sequentially), and the process and speed by which improved wellness or recovery occurs becomes much greater.

    For instance, directly relevant to my case (and Mike’s) is the idea of avoidance of toxins combined with detoxification. Either of these on its own appears to have the potential of having some effect on wellness. Combine them (as Mike and I both have done) and improvements seem to have the potential of being much more dramatic and sustainable.

    Here’s another example.

    Back when I was living in my moldy house, I tried a very small dose of a mild antiviral (Famvir). This gave me a die-off as severe as most people taking Valcyte, and so after a while I abandoned the effort.

    About six weeks ago, I decided to once again give the Famvir a try. This was in part because I wondered if my cognitive function might improve, but also merely to see if (as was the case with antibiotics) mold avoidance would allow me to tolerate the drug better.

    I did indeed tolerate the drug well, being able to immediately tolerate a high dose of the drug with only minor die-off symptoms.

    But also, to my astonishment, within three days the extent to which I was bothered by toxic mold went down substantially. My tolerance had already increased a lot (apparently just as result of “detox in the wilderness”) but this gave another huge amount of decrease.

    This improvement has remained constant, allowing me much more flexibility in terms of where I’ve been able to go. Exposures to a lot of mold (in a few buildings but mostly in the outside air in some places) still have a big negative effect on me, but it’s far less of a problem.

    This has been important not just in my life limitations but also in the extent to which I’ve been able to detox. As I stated earlier, my body seems quite reluctant to detox anything unless it is in an environment with a very low amount of toxic mold (enough to, I believe, get my C4a/complement levels totally down to normal).

    Now that mold is bothering me less, my system is spitting out toxins like gangbusters even in places that used to be pretty bothersome to me. And while very heavy detox is not always a barrel of fun, the extent to which it’s happening makes me optimistic that my reactivity will go down even more.

    Whether Valcyte might help further is something that I’m considering. It’s a thought.

    Why it is that an antiviral might decrease mold reactivity is an interesting question. My first guess is that it might have something to do with improving the functionality of the macrophages, but something else certainly could be happening.

    What I now wonder is whether those folks who have gotten improvements through the use of antivirals may have already been engaging in inadvertent or purposeful moderate avoidance (e.g. having moved out of a moldy house to a good residence as well as living in a place where outside mold levels are good). I would guess that if they’d not also pursued detox their wellness might be fragile, but even a short-term big gain suggests that there likely is _something_ to the treatment.

    (The success of Ampligen in helping patients to obtain wellness only insofar as they are on the drug fits with this theory too.)

    I’ve hesitated to bring my antiviral use up in public forums 1) because I previously was not sure if the improvement would last and 2) because I wanted to make sure that I wasn’t getting across the idea that antivirals alone are the solution to mold illness.

    If I hadn’t been avoiding mold scrupulously, I’d never have been able to do any detox to begin with. And if I hadn’t detoxed and been avoiding mold, I’d never have been able to tolerate the antiviral.

    Again, then, it seems to me important to consider ALL components of this illness when working toward recovery. To the extent that a particular treatment has brought at least a few individuals close to full recovery (rather than just effecting improvements with regard to some symptoms), it seems to me that it should be considered part of the overall puzzle.

    Insofar as we try to partition the illness into “subgroups,” we’re almost certainly going to leave out some of these puzzle pieces. That’s why I said earlier that I believe strongly that the notion of subgroups is dangerous.

    I thus hope that those following in Mike’s path will consider looking at mold, as well as (even if pathogen killers aren’t pursued) supporting the immune system.

    On a totally different note:

    Mike’s shared some great photos of what’s happened to him since his recovery. Before going back to working on my bio, I’d like to share a few of mine.

    About a year ago, I decided to do my best to avoid mold as scrupulously as I could.

    I started out by finding a particular location and staying put.

    After a few months, this started to drive me crazy. Too much like what my life was like when I was disabled by CFS!

I thus decided that I’d travel around the country, seeking out places that felt good to me.

    The interesting thing is that when I’ve told healthy people about my road trip, they’ve almost invariably expressed excitement for me and stated that it would be fun to do that themselves.

    On the other hand, almost all the CFS sufferers I’ve discussed this with have been horrified on my behalf. Why would I want to do something that “stressful"?, they’ve asked.

    I think this says something really important about the extent to which the mentality that this disease forces on us limits our sense of what is possible in the world. Of all the things that the illness does to us, that seems to me one of the saddest of all.

    I’m thus really glad to be back amongst the truly living.

    In the event that people are interested, I’ve put together a “travelogue” (with photos) detailing the places I’ve been and the things I’ve done during the last year. It can be found at:

    http://twitter.com/SlayaDragon

    (I’ve got a lot to add for August, so look for an update soon.)

    Finally, if anyone would like to talk to me about their own personal considerations with regard to addressing toxic mold, please feel free to write to me at:

    slayadragon@yahoo.com

    Thanks again to all for your kind welcome to this board! Hopefully I will hear from you again soon.


    Best regards,

    Lisa
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    Today 01:41 PM jenbooks

    As long as the mold discussion is here for now (though I think if Lisa would ask Cort he'd easily move it all to the treatment section and that would be more useful as this social group is about following Mike's doc's patients...the 3 new patients...

    Anyway

    http://www.moldrx4u.com/Scientificdata.asp

    My friend interviewed this guy and I just spoke with the maker of the aroma diffuser at diffuser world. This may work for people with any mold problem that is not severe (ie some stachy infestation that requires cutting out and removing much material etc). He sells it for much cheaper than Dr. Close...

    He's also working on a commercial prototype using pressurized air to push nebulized essential oils into wall cavities. Not sure when that will be available.

    It looks like nebulizing potent essential oils (I'd suggest Nature's Gift and NOT young living oils!) kills spores dead.

    Re: CFS people don't like the idea of travelling and camping out and that indicates how sad and limited their sense of life is, I really profoundly disagree. Healthy or sick I wouldn't want to do it. I have a strong sense of place and don't like disruption. Being on the move and sleeping in tents sounds very disruptive to me. I have close ties where I live. I have work ties as well. Others have family to take care of including children they can't just up and leave. I've said all this before. It's also expensive, since you won't be working during that time or earning money, and since a proper vehicle and all the camping gear ain't cheap. It's not a sign of limitations so much as preference as to how to live. Thus if mold exposure is a part of some of our illness and it probably is--I am curious if there are other ways to deal with it and so I'm buying this diffuser and we'll see. I was also informed today that though Hepa filters (true Hepa) are great at catching mold spores, a typical Austin air filter will get clogged up in terms of mold in about six months. Then it won't be catching the spores anymore.
  4. tahoma

    tahoma

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    Hey Lisa

    Hi Lisa:

    I have some specific questions for you and will take you up on your offer to email you at your personal address. I have to go out of town (back to Chicago, where I'm from as well), and will contact you when I return...

    THanks,
    Tahoma
  5. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    I have problems with mold but mold is definitely not all 'it' for me. There's an ongoing hypersensitivity problem to so many substances. Basically I would say that everything is over-activated for me - that my body/nervous system is in a state of arousal

    I stepped into a room and literally felt my system slump and the hairs stand up on the back of my neck - I looked up at the ceiling and there was a streak of black mold spreading across the ceiling. But moving out to the desert only provided temporary help. Indeed camping out there eventually proved impossible as I ultimately became overwhelmed by the odors from every aromatic shrub around. It took a while for this to manifest in the desert but was immediately evident in a pine forest - just could not handle the outgassing from the pine needles.

    It actually drove me back into the city where you don't have masses of the same kind of vegetation.

    What a bizarre problem that was; there I was in the middle of the Mojave desert with some of the cleanest air in the country and evening would come and the cool air would come sliding down the slopes carrying with it the fragrances from these aromatic shrubs and I couldn't sleep. I was actually in pain. Later I had problems with the shrubs on the desert floor.

    I wondered if I just stuck it out if my system would adjust; I actually think it would of. I contemplated forcing myself to camp out in the forest for three or four days to see if my system would adjust - but could never bring up the nerve to do.

    At the same time I was actually doing better with chemicals in the city thank god.

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