Guest guest Posted November 17, 2006 Report Share Posted November 17, 2006 Hello Sharon, Have you been retested for co-infections of Lyme disease? Hello everyone, I joined this list a few weeks ago and have been avidly reading and learning. I have been chronically fatigued for years; it's worsened terribly lately. I had Lyme 5 yrs ago, but was lucky enough to find the bull's eye within a few days and start the 28 day doxy routine. That may or may not be relevant to what I'm experiencing now, the crushing exhaustion and now constant FM type pain, along with a hip that's deteriorating with arthritis. I only mention the Lyme because the distinctive rash was about 4 " below the hip in question and I have no other arthritic symptoms. The now constant FM pain and stiffness, mainly in my upper thigh muscles, along with the fatigue is what drove me to this list. Oh yes, cognitive dysfunction is definitly present as well. At some point I'm hoping that some Dr will give me a diagnosis! I so firmly believe that mold is *probably* at the base of my problems (humid climate, flooded basement many times), that no matter what dx the orthodox profession may come up with I'm going to self treat for mold. Which brings me to my question----I have a rx for " Nystop " powder that I talked my GP into about a yr and 1/2 ago. I put it away and forgot all about it till Edy's post reminded me. My original plan was to make (homemade) a nasal spray with this, and I'm positive I had found a " recipe " from someone on an email list. Darned if I can find it anywhere now! Has anyone here experimented with this? I'd be so happy if anybody has a " recipe " ! I do make my own nasal spray with colloidal silver and MSM, but it really doesn't do much for a low level sinus infection that I've been walking around with for years. Gotta be fungus..... Sharon/starshar > From: Edy Rayfield > Sent: Thursday, November 16, 2006 10:45 AM > > Thanks , > > I'm seeing a mold doc here in central CA that admires Shoemaker, but has > a couple of different opinions. His name is Marinkovich, you can google > him, but he did a MAST test on me and I'm looking for some input on this. > At this point he has me on Nizoral nose spray and boy has it caused some > herxing. That would indicate to me that I am killing mold. Am I correct > in thinking this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2006 Report Share Posted November 17, 2006 Good point. But from what I read even the lyme is disasterously diffifcult to erradicate. You should consider testing agian for all co-infections as well as the lyme again. Also, finances allowing I don't know about self treating for mold. There's things you need a scrip for such as cholostyramine and such for eliminating the biotoxins from these organisms. If you can go into the archives and read what you can find that has been written on this list in the past about mold and it's toxins. <teresasimmons@...> wrote: Hello Sharon, Have you been retested for co-infections of Lyme disease? Hello everyone, I joined this list a few weeks ago and have been avidly reading and learning. I have been chronically fatigued for years; it's worsened terribly lately. I had Lyme 5 yrs ago, but was lucky enough to find the bull's eye within a few days and start the 28 day doxy routine. That may or may not be relevant to what I'm experiencing now, the crushing exhaustion and now constant FM type pain, along with a hip that's deteriorating with arthritis. I only mention the Lyme because the distinctive rash was about 4 " below the hip in question and I have no other arthritic symptoms. The now constant FM pain and stiffness, mainly in my upper thigh muscles, along with the fatigue is what drove me to this list. Oh yes, cognitive dysfunction is definitly present as well. At some point I'm hoping that some Dr will give me a diagnosis! I so firmly believe that mold is *probably* at the base of my problems (humid climate, flooded basement many times), that no matter what dx the orthodox profession may come up with I'm going to self treat for mold. Which brings me to my question----I have a rx for " Nystop " powder that I talked my GP into about a yr and 1/2 ago. I put it away and forgot all about it till Edy's post reminded me. My original plan was to make (homemade) a nasal spray with this, and I'm positive I had found a " recipe " from someone on an email list. Darned if I can find it anywhere now! Has anyone here experimented with this? I'd be so happy if anybody has a " recipe " ! I do make my own nasal spray with colloidal silver and MSM, but it really doesn't do much for a low level sinus infection that I've been walking around with for years. Gotta be fungus..... Sharon/starshar > From: Edy Rayfield > Sent: Thursday, November 16, 2006 10:45 AM > > Thanks , > > I'm seeing a mold doc here in central CA that admires Shoemaker, but has > a couple of different opinions. His name is Marinkovich, you can google > him, but he did a MAST test on me and I'm looking for some input on this. > At this point he has me on Nizoral nose spray and boy has it caused some > herxing. That would indicate to me that I am killing mold. Am I correct > in thinking this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2006 Report Share Posted November 18, 2006 I would give anything to be as close to Dr. Shoemaker as you are. He is VERY lyme literate and that's where I would go. Actually that's where I am going to go as soon as I can afford it. If I were you I'd definetly give his office a call. It may not be within 60 miles of you, but it's right in your neck of the woods. Re: Nizoral nose spray? Thanks, Edy and Theresa Here in the SE corner of PA, access to Lyme literate docs is almost non-existent. My primary knows of 3 within about 60 miles. None take insurance, and all are avid abx prescribers. Since $ is a bit on the scarce side, I'm playing Dr for myself, for the most part. Alternate docs are also quite scarce around here. I'm seeing my GP in about 10 days, and I'll be armed with a lot of ideas I've gleaned from this list, and the archives. Within the limitations imposed on him by the insurance cos, he still works with my ideas as freely as he can. He surprises me by knowing about most of holistic modalities I bring up and will encourage me to use " x " , frequently. This tells me how hampered he is by today's medical/insurance guidelines. (stifling rant). I have one of Doug Kauffman's books on mold, I think it's the one on diabetes. It was quite an eyeopener. I've got Shoemaker on my book wish list now. Does anyone here have any experience with Pau d'arco? It's said to be very efficacious against mold. As you might guess, I've pretty much dismissed the idea of long term Lyme since my CFS/FM symptoms don't match that closely. My sinuses tell me that I'm probably dealing with a long time mold problem. 3 yrs before I got Lyme I ended up in an ENT's office because of constant deep itching in my ears. He took one 10 second look in one ear and pronounced FUNGUS. I had such a massive sinus infection 2 yrs ago, after being stung by 5 yellowjackets (I don't know what that connection is, maybe histamine..), that I ended up asking for Bactrim for 14 days (I hate abx!). Kauffman had mentioned that it was the only abx that had an antifungal in it. It was great, for awhile, I felt well again! So, here I am, on the trail of killing off mold. I do figure the " terrain " has to be considered, otherwise humanity should've died off millennia ago considering the mold population of our planet. Sharon From: " Edy Rayfield " <edyrayfield@...> Sent: Friday, November 17, 2006 10:42 AM > Good point. But from what I read even the lyme is disasterously > diffifcult to erradicate. You should consider testing agian for all > co-infections as well as the lyme again. Also, finances allowing I don't > know about self treating for mold. There's things you need a scrip for > such as cholostyramine and such for eliminating the biotoxins from these > organisms. If you can go into the archives and read what you can find > that has been written on this list in the past about mold and it's toxins. > > <teresasimmons@...> wrote: > Hello Sharon, > Have you been retested for co-infections of Lyme disease? > > Hello everyone, > > I joined this list a few weeks ago and have been avidly reading and > learning. I have been chronically fatigued for years; it's worsened > terribly > lately. I had Lyme 5 yrs ago, but was lucky enough to find the bull's eye > within a few days and start the 28 day doxy routine. That may or may not > be > relevant to what I'm experiencing now, the crushing exhaustion and now > constant FM type pain, along with a hip that's deteriorating with > arthritis. > I only mention the Lyme because the distinctive rash was about 4 " below > the > hip in question and I have no other arthritic symptoms. > The now constant FM pain and stiffness, mainly in my upper thigh muscles, > along with the fatigue is what drove me to this list. Oh yes, cognitive > dysfunction is definitly present as well. > > At some point I'm hoping that some Dr will give me a diagnosis! > > I so firmly believe that mold is *probably* at the base of my problems > (humid climate, flooded basement many times), that no matter what dx the > orthodox profession may come up with I'm going to self treat for mold. > > Which brings me to my question----I have a rx for " Nystop " powder that I > talked my GP into about a yr and 1/2 ago. I put it away and forgot all > about > it till Edy's post reminded me. > My original plan was to make (homemade) a nasal spray with this, and I'm > positive I had found a " recipe " from someone on an email list. Darned if I > can find it anywhere now! > > Has anyone here experimented with this? > I'd be so happy if anybody has a " recipe " ! > > I do make my own nasal spray with colloidal silver and MSM, but it really > doesn't do much for a low level sinus infection that I've been walking > around with for years. > Gotta be fungus..... ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.409 / Virus Database: 268.14.6/536 - Release Date: 11/16/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2006 Report Share Posted November 18, 2006 From: " Edy Rayfield " <edyrayfield@...> Sent: Saturday, November 18, 2006 3:17 PM >I would give anything to be as close to Dr. Shoemaker as you are. He is >VERY lyme literate and that's where I would go. Actually that's where I am >going to go as soon as I can afford it. If I were you I'd definetly give >his office a call. It may not be within 60 miles of you, but it's right in >your neck of the woods. **** I hear you, Edy! I think he'd be about a 2-3 hour drive, tops, but I'd have to win a lottery or something to be able to take advantage of his expertise. I used to be in email correspondence with a woman in southern land, very sick with long term Lyme, CFS/FM. In her search for healing she went to Shoemaker, spending the night in his area to be able to deal with the fatigue problem. Last I heard from her, she claimed that she was not getting any better, despite following his recommendations to the letter for months. I do believe that she was almost fanatical in his program, very disciplined and determined to be well. I don't know if she is an exception, or whether his program might not work for Everyone........... I hope you get there soon; I suspect there will be a lot of people on this list waiting to hear about it! Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2006 Report Share Posted November 18, 2006 Nothing seems to work for everybody. That is probably true in all of medicine. Adrienne I don't know if she is an exception, or whether his program might not work for Everyone........... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 People need to remember that fungal infection is not the same as being sensitive to mold toxins - I can't follow the discussion where people keep going back and forth between the two as if they are the same. Mycotoxins are produced by mold outside the body and usually inhaled or otherwise absorbed/ingested and are not alive themselves. Fungus is like bacteria that live and multiply in the body. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 I use the Grossan Nasal Irrigator attachment to the WaterPik. I include 50 mg of Nizoral in each full reservoir. That amount is just my arbitrary choice, so it wouldn't count as a recommended recipe. (Note: Rx Nizoral _is_ used locally, although it's as an ointment.) I did have herxing from this when I started it. While I'm at it, I also include in my arbitrary formula Benadryl (two tabs) and Xylitol (four teaspoons). I also use a dehumidifier (relatively cheap one, about $120 at Sears) set to 30% (very low: standard recommended level is 35% to 55%), in the room where I spend most of my time. It heats the room as a side effect, a problem in warm weather. At the smart suggestion of someone on the list (thanks!), I add a little Tea Tree Oil after emptying and before restarting, because the squeezed out water will sit there until it is full again. I think all this has helped me, but who knows? Something has helped me, and I tend to believe in things. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 On 11/19/06, H. Wish <orchidwish@...> wrote: > > People need to remember that fungal infection is not the same as > being sensitive to mold toxins - I can't follow the discussion where > people keep going back and forth between the two as if they are the > same. Mycotoxins are produced by mold outside the body and usually > inhaled or otherwise absorbed/ingested and are not alive themselves. > And the thing that a lot of people don't realize is that they can persist in a building for a very long time, because they are fairly stable compounds.The trichothecene mycoxins can last years with very little degradation. So spore testing (which is usually called 'air testing' but it only tests for identifiable spore families.. which are overly broad..) Spore testing should not be used for clearance testing..IMO. Blowing a tiny amount of air through a 1 micron or more filter and then examining the spores that were not just blown through - testing that often purports to say that a given mold is not there, is often wrong. All spore testing can do is tell you that a given family of mold spores IS there. Also, some of the worst mold types, like stachybotrys, almost never sporulate, so a 'clean' mold test means next to nothing where stachybotrys is concerned. Also, a number of recent studies have indicated that the mycotoxin load that is carried on microscopic fungal fragments is much higher than the mycotoxin that is in identificable spores. The fungal fragments are often so small that they sail right through filters..both spore testing filters like the Air-O-Cell and also even HEPA filters.. etc. If the filters stopped everything, they wouldn't let enough air through.. Think of a mesh and you'll get the picture. Very small particles just go through the mesh. This has led to a number of scientists using high-volume centrifugal air sampling into buffered liquids.. what are called " impingement sampling " devices.. one example is called a " Spin Con " - to extract the microscopic fungal fragments - the mycotoxin particles, basically from the air. The particles are so small that they simpy go through most filters along with the air. So, it stands to reason that measurements of the amount of the toxins in the air are almost certainly lower than the real amount. When you have fungi that have developed these toxins to fight each other over millions and millions of years, is it unreasonable to say that the chances are good that we still have not discovered all of them, as well? Fungus is like bacteria that live and multiply in the body. > Some fungi can cause 'mycoses' which are colonies inside of a host where they grow, just as they would in any other growing medium. Yes, they can act like bacteria, but the difference is that fungi are not mobile like bacteria are.. they are not plants..either, as I understand it they are more closely related to 'animalia' than 'plantae' or whatever.. A doctor would need to explain the difference. But they have been around for millions of years... we evolved alongside them. That does not make them safe or nontoxic, as some would have you believe.. (How scientists can put forward that chain of logic amazes me.. its like saying that we should not worry about diseases because they have always existed. I guess those people's argument is directed at liability.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 From: " Kolodney " <d4235@...> Sent: Monday, November 20, 2006 6:22 PM Thank you for this " recipe " , ! I'm still wading through 100s of emails since T-day week kept me away from the computer so much. I'm grateful for this and will print it out. I'm familiar with the Grossan products, though have not used them. Appreciatively, Sharon >I use the Grossan Nasal Irrigator attachment to the WaterPik. I include 50 > mg of Nizoral in each full reservoir. That amount is just my arbitrary > choice, so it wouldn't count as a recommended recipe. (Note: Rx Nizoral > _is_ > used locally, although it's as an ointment.) I did have herxing from this > when I started it. > > While I'm at it, I also include in my arbitrary formula Benadryl (two > tabs) > and Xylitol (four teaspoons). > > I also use a dehumidifier (relatively cheap one, about $120 at Sears) set > to > 30% (very low: standard recommended level is 35% to 55%), in the room > where > I spend most of my time. It heats the room as a side effect, a problem in > warm weather. At the smart suggestion of someone on the list (thanks!), I > add a little Tea Tree Oil after emptying and before restarting, because > the > squeezed out water will sit there until it is full again. > > I think all this has helped me, but who knows? Something has helped me, > and > I tend to believe in things. Quote Link to comment Share on other sites More sharing options...
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