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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Biotoxin/Mold Illness

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by soulfeast, Aug 22, 2010.

  1. slayadragon

    slayadragon Senior Member

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    That's really interesting. So you think it's blowing from somewhere else rather than emanating from Council Bluff? Is it just when the wind is blowing from the SW that it acts up?

    Probably you won't want to spend much time in Council Bluffs to try to figure out the patterns though! That's the problem: those of us who know how to identify this stuff automatically run from it. That limits how much we can learn about it.

    Stormy's house (near Wichita) isn't hit as badly with the "?" as it was in January 2009, but it's still noticeable. I've experienced it on a couple of occasions since I've been here. It is present only when the wind blows hard from the south. Whether it's blowing all the way from Dallas (which indeed is directly south.....though a couple of hundred miles!) is unclear. It's definitely blowing from somewhere south of the Kansas border (e.g. Oklahoma or Texas) though.

    Best, Lisa
  2. slayadragon

    slayadragon Senior Member

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    These are terrible stories.

    My own mold avoidance experiences have been awful beyond what I ever could have imagined. I'm not sorry that I've done it, but it's absurdly hard even with a huge amount of resources.

    I can't imagine suggesting to someone with ME/CFS that it's okay to continue living in a house that has a Stachy problem. I can't imagine suggesting to someone with ME/CFS that it's okay to stay in a place like Lake Tahoe or Dallas.

    But engineering a successful move elsewhere is something that is very difficult to pull off.

    I'm at the point right now that if people with ME/CFS are just moderately ill and ask if they should pursue mold avoidance further, I'm really hesitant to suggest that they try it. The likelihood that they will end up in an environment that's worse than the one that they're in -- and that they'll just end up sicker and poorer than when they started -- is too high.

    Erik always stated that his goal in talking to patients about this is with the hope of encouraging researchers and doctors to look into the phenomenon, not to try to get them to try extreme avoidance themselves.

    That's how I'm looking at it too. Certainly I would like to help people to get better if I can, but mold avoidance is a really hard way to do it.

    Best, Lisa
  3. soulfeast

    soulfeast Senior Member

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    Me: Not taking sides.. I have to figue this out for myself. How do you know there is an ? around Joey's parents house that is not directly from the house? The house has to breath in some sense doesnt it? The laundry room in my old house did me in.. it vents out.

    I probably wont pitch a tent but if I do, I'll let you all know what happens. I need to go outside and sit for periods and may need a sleeping bag or some sort of insulation for that unless it warms up some here.

    Our move was very traumatic for me. I do not regret getting out. Lisa did not make me move. actually I met a man by chance in the grocery store who tripped that wire. He heard me say mold to my neighbor who I met up with at a corner in the store and walked over to me.. said he thought he had lyme and found out it was mold.. he moved and is 90% better after csm and other therapies.

    In a perfect world, we would have found a house in VA to rent but we didnt. My gro store friend got the hell out as soon as his ERMI results came back.. literally. Idont know how it all came together so well for him and his family but it did. Probably one reason is he didnt second guess his decision and another reason is that he had not developed chronic fatigue, and if he had it was a milder version.

    Ive had CFS myself for only 2 years but Im toast. He did say that the ablity to handle stress was one of the first things to go for him. He is doing really well in VA so if ? is there with all the algae covered ponds (which I thought was included in the ? factor at some point) then the ? doesnt keep him sick. If the ? is here, its not keeping my sister or my parents bedridden.. they function better than me and my parents are 72.. admitting neurontin and other meds are holding them up. They do not have CFS!

    My decision to move to AL from VA was based on the fact that I was deteriorating emotionally from I think "hits" in the house from dust as well as physically. Though before the dust hits, I started to feel my muscles beginnig to recover.. a fast trip to the store was not an overwhelming idea. Before I had to plan for a day I could manage to go and plan for days to crash.

    There was an obvoius connection to the dust and I wonder if at that point I was unmasking in my "mold" house since the remediation nd experiencing intensification reactions.. I would lose it emtoionally, dive into depression and sometimes to the point of suicidal. We looked for places to move into but my ability to endure that was just not there. My husband didnt know what to do. We had no clue a new house would be a problem. that I would unmask though I was told this could happen.. just didnt sink in the load of chemicals in a new house.

    We were hoping to find a new townhome to then later use as rental income and then move from VA. It would take 6 months to have one built because market is so slow.. I was too afraid that any older place would have mold. I was not able to think clearly about this and my husband was at a loss. At the same time, every bone in my body and brain was telling me to get the hell out of not only my house, but VA. In my swollen brain there was a blazing NO that would come up on my forehead if Va was mentioned. So I was primed emotionally for some reason to leave VA.

    So I call my parents devastated.. I dont know what to do but I have to get out of here. My father has property that he started to develop with a builder and one of the houses was almmost ready.. I need help. My husband has been staying home from work days to help.. so it seemed a good way to go.. time with family.. time for the kids to get to know g=parents. Biggest problem was my husband would have to travel back and forth until house cleaned out (which he would have to do on his own anyway... I was and am afraid of the dust and the effect..this is a state you do not just pull yourself out of.. you have to wait it out).

    Our house was already "remediated" The problem was it had not been cleaned, cloth, stufffed items had not been trashed.. it may or not be livable for me one day. But I dont think I will take that chance.

    So the move I took did not have to be so hard. I dont blame anyone for that. I dont have problems with people sharing their diff experiences and POV..

    I do have problems with no counter POV.. and I appreciate this here. I esp appreciate the civil tone you all are using. ive been ion mold venues where people are not civil or its one way OR the other and that is very difficult for someone in crisis to work through. I just wishe there were more views and experiences openly shared.

    How many people left a home and kept objects .. I would love to hear from you? Moved and threw everything away? Remediated and got better?

    I know from reading SHoemaker's info that he uses the EMRI, which is flawed in my opinion, to measure if your house is livable. He can correlate his biotoxin labs to EMRi findings.. so he is not yet at least in the pristine faction.. yet he will not prescribe (grapevine) VIP unless ERMI results are good. It wont work if you are still being exposed. The question is what measur edo you use for determining that.. and how far do you take it? What is the cost.. benefit ratio for the decisions we make?

    So in addition to the ? potentially in the air, there are alot of ????? that are also factors. If I drive my ANS to the brink worrying about ?, I could kill myself. There has to be some sense of the big picture.. does that make sense?

    I am also not convinced ? is or is always responsible for the identified ? symptoms. Or if ? is not a chemical in the air that triggers something internal.. too many factors to say an ? in the air caused my ANS to whack out. I have pooling in my legs.. I dont think its electrical, classic OI-POTs the most extreme Ive espreiences.. im not only hyperadrengeric at this point.. its not all glutmate based though thats involved. .. but I just moved my family out of the house they grew up in.. left everything behind.. feel like shit... and moved into (I should have known) the cruelest sorry to say Christian community I have ever encountered (in recent years) justiposed to the addict culture (which the Christians here are manifesting btw in their own way).. classic either or dysfunction which ironically fits right into the mold community if you think about it.. mold wars that Ive run into .. the energy is just overwhelmingly nasty at times and Im too sensitive to deal with it.. so thats a factor as well. How much do we need to load on?

    Honestly there are all kind of avoidance one may need to practice to get well. Frustrated but appreciate info to a point.


    Originally Posted by jenbooks
    I haven't been everywhere by any means, but anyway Robin is it possible to set up a good tent with a safe little space heater to warm it and a super good sleeping bag (I just picked up a floor model that goes down to 20 degrees) and see if you feel better sleeping outside for a week? It will give you info instead of worrying about stuff.
  4. soulfeast

    soulfeast Senior Member

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    And.. I can try to talk logically to some degree and act like I can spare to experiment with this or that option but I am limited in how much more my body can take. I need common sense ideas to work with what Ive got. I am out of the mold house. Plus one I would hope but unfortunately I feel like that is not enough anymore. I have to get "cleaner". Then I have had people suggest not letting anyone in the house (i get that.. so they dont bring their mold spores in) and I get that (becasue a primed biotoxin pathway cannot take but so much exposure and they leave their shit in your house), but this is sure way to prime you SNS to control your entire life. Esp if you are as sick as some of us are and esp if you have a family to take care of. There HAVE TO BE MIDDLE GROUND GOOD ENOUGH WAYS TO HANDLE BIOTOXIN ILLNESS.. I have said many times, I am not looking to climb MT whatever.. I would love 50% better.. then we can go from there.. THIS IS THE KIND OF TALK I NEED.

    That said.. others need to pardon me.. push for the mountain.. we need separate threads for things like this.. TWO DIFF INTENTIONS.

    yes Im frustrated, tireed, overwhelmed and just want to feel I am doing OK.. I cannot do more.

    I cannot imagine some of the sick people I know just moving out of their houses let alone finding the unfindable pristine..

    It would be nice to have reasonable in here somewhere.. while still pursuring the mountain.. on diff threads.. make sense?

    I have a friend I might (not sure its a good idea but where to go?) send to this thread who has a c4a count close to 90,000. I think I can say that she needs step by step common sense ways to look at this picture and deal with it.. she does not need to worry about avoiding ? .. how do you manage that.. its close to intangeable.

    Thats why I think if we think support vs research, it would be helpful. When you tell people to move out of their houses, gosh.. think families, think this person had to crawl to the bathroom not too long ago.. how much support does this person have.. are their helpful guidelines or hints to share..

    I became so stressed trying to get, pull, sort, flush out info from people before I moved that THAT almost did me in.. so now my ANS is whacked out... which ??? factor caused that\? And I am not dismissing the ?.. its just life is complicated.. and telling someone to MOVE and get the hell out.. comes with consequences just like them staying there does. :-( Not easy.. same time appreciating ALL info..
  5. Tree

    Tree

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    northern Colorado
    Complete misunderstanding

    Lisa, I'm sorry that your reading of my post apparently gave you the wrong impression about my level of functioning being normal or moderate or thereabouts. It wasn't my intention with my post to give an account of my medical ups and downs in the 25 years I've had this illness (and yes, I fit the Canadian criteria.) I can see how you might get that impression because I mentioned some times along the way in which I was able to work and be more active.

    But to clarify, when I fell ill - dramatically so -- in 1985 in Albuquerque, I was then bedridden for three years. The first six weeks, I barely was able to move. My parents cleaned my apartment and brought me food. I could not even stand up. Eventually, I crawled to the bathroom, sat on the floor of the shower letting water hit me, and then spent days getting over that. The two times I made it out to the doctor in three years, it took me weeks to recover. I was flattened by this illness, as we all have been. If you had read my post and the part about my altered white count and fever of unknown origin, which persisted for YEARS, then I don't think you would have come away thinking I've had normal or moderate functioning. The fairly brief trip to Wichita that I took in those years was devastating to my health.

    I did improve initially in Florida, but then gradually went downhill due to toxic exposures. Even then, even at my best, I was not able to travel, and never had vacation time, because I always used up my vacation as sick days. I also was able to work from home for two of those years (I was a government speechwriter, and able to do my work in bed.) So while I had some improvement, I was always right on the edge, and after four years, I was barely holding on. I was able to sing on occasion, which gave me a lot of happiness, and I sacrificed in other ways to be able to do that. I had to hire my cleaning and ALL shopping done. I sometimes could not even drive and had to take cabs. And often, I just was at home, going downhill over those four years.

    I also initially improved in Chapel Hill, and felt pretty well there, but my job was completely undemanding editing work, and I did nothing outside of my job but go home and rest each night and every weekend. I had no social life or other demands. Again, it was a very dicey kind of existence, dependent on doing just the right things and not expending too much energy.

    Eventually after my year in Chapel Hill, my health deteriorated again so badly over the following two years. I'm now to the point that I have not worked in the past 15 years. I cannot travel at all. My MCS is not as severe as it was initially, but still troubling. I use wheelchairs in big box stores. I ride in the car on occasion to be out in the world, and sometimes can do a grocery store if I am having a good day, but more often than not, I just sit in the car while my husband shops. I still have no margin for stressors of any kind, physical or otherwise. I still "pay for" any overexpenditure from my energy bank. I still wake up most days tired. But yes, I am better than in the beginning, and not flat on my back every day. But I have to pace myself to do things. I let housework go until I have the energy to tackle a small part of one room at a time, so that I don't overdo. I have made all the usual adjustments that all of us with this illness have had to make over time. I cannot spend a lot of time online, as the fatigue of just reading long threads really affects me.

    It's not my intention to debate you about any of your beliefs or ideas. I don't think I fully understand your thinking, and that may be a matter of my inability to concentrate well on your long, explanatory post. I just don't have it in me to do so, and I am sorry I have misread or misunderstood anything. Apparently, that can happen to all of us, as I think it did when you were reading my post.

    I only offered my experience as a way to shed light on the fact that for me, some of the locations mentioned as being free of the ? factor you mention have turned out to be some of the places I've felt the worst. You seem to continue to say that northern Colorado is fine and free of ? -- it may be free of ? but it has been the worst location for my health since Albuquerque, where I first fell ill. I have not worked in 15 years. NOT WORKED. NOT TRAVELED. NOT LIVED LIFE. I don't understand your remark about being eaten by a tiger, again, I don't do well unraveling double negatives, but I think you just didn't understand my situation, or the point I was trying to make, which is:

    if the ick ? factor is not present in northern Colorado, then the ick ? must not be a very strong element in MY illness which IS Canadian criteria CFS/ME. I have been a CLASSIC case of this illness, with ups and downs, and long, now-permanent periods of inability to function, and even came down with it at a time close to the Incline Village epidemic. The fact that my illness has been at its worst in three places (Albuquerque, Wichita, and northern Colorado) that you mention being relatively free of the ? factor, and the fact that MANY people have severe forms of this illness in places that you say have low ? factor indicates to me that ?factor cannot be the determining element in this illness.

    If I am missing something in your theory, I wouldn't be surprised. I just can't unravel right now all that you've written. I do agree that toxic mold is a huge problem, and I agree that getting out of toxic mold dwellings is a must for the repair of one's health. I just don't fully understand the ? factor, the plumes you speak of. I don't believe or disbelieve your theory, I just don't have any personal experience that is supportive of it, and I do have considerable personal experience that is not supportive of it. If we are to be fully open-minded and explore the possibilities, and seek to investigate and study possibilities, we have to take into account all anecdotal evidence, and not just that which supports our theories.
  6. Tree

    Tree

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    Wayne, I wanted to thank you for such a thoughtful and helpful post. I could well relate to a lot of what you wrote about the things that set us up for falling prey to ME/CFS - the cigarette smoke exposure in childhood (how many thousands of toxins in each one? Yikes!) And the vaccinations - I had a seizure and lost consciousness at age 5 after a polio vaccine, probably a big piece of my trouble started right then. Like you, I had the head injuries and whiplash, also, and at least one concussion. Multiple amalgams and two bad root canals that failed. The dental element in regaining our health seems paramount for so many of us. I am still working on that angle.

    I will check out the AP form of atlas adjustment you mention having helped you so much. I have badly deteriorated cervical discs, and after the last whiplash injury in 1997, I spent years just holding my neck. I did finally get some relief with an atlas adjustment and my neck no longer bothers me as it did. I still have tremendous TMJ, jaw, ear, sinus issues, however, and migraines/dental things. I also have severe imbalance in my inner ear between the sodium and postassium lymph chambers, resulting in extremely high inner ear pressures and what is called endolymphatic hydrops, which is similar to Meniere's. So I sympathize with your vertigo. My balance has improved, but I still regularly walk right into the side of my husband if we are walking side by side. This illness struck me as neuro from the start - I had extreme photophobia in the early years, and spinal cord tenderness. And most of my symptoms have been from the shoulders up. I'm encouraged that you have found greater resiliance since doing the amalgam removal and the AP, among other things. I know you still struggle mightily, but over time, I have found your posts, and your journey, to be so interesting and helpful.

    One question I have related to something you mentioned - I found the story of the woman in your town who improved so much to be a compelling story. How did she track down the focal infections? I believe that unknown dental infections are a huge factor, and would like to find a way to track down focal infections. I don't have a biologic dentist here in my town, but there are some nearby. How did this woman treat those focal infections? I am reluctant to do antiobiotics except in life-threatening circumstances. But if it would help more than harm in the long run....

    Anyway, thanks again for your post, and for shedding further light on your experiences.

    Tree
  7. mojoey

    mojoey Senior Member

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    I think we're making an already complex issue exponentially more complex if we're talking about multiple illnesses. Isn't this discussion about biotoxins in ME/CFS? None of us know if there is one primary cause or multiple causes to ME/CFS, but as Tree alluded to above, we're talking about Canadian Consensus Critera ME/CFS here right?

    I'm not trying to discount other illnesses, but if we're unraveling into all chemicals, all molds, all pesticides, all EMFs, in relation to ME/CFS, chronic lyme disease, MCS, and more, does anyone actually believe this discussion will do anything but spin off into endless permutations?

    The role of biotoxins in ME/CFS. I kindly suggest we get back on track.

    Also, as a correction to what Lisa posted, I am pursuing moderate avoidance first. I am moving to a house in Las Vegas, which may be good or bad; I really have no idea. However, I am planning this as if my end goal is to make it into the GFD so that I don't need to buy anything twice. One of my secondary goals is to outline what it takes to do this, and that would include transparency about cost estimates. Hence, I'm pretty much starting from scratch besides my computer and cell phone for now to choke off the contamination without the credit card runneth over more than need be. Seriously thank goodness for Hanes.com and Amazon.com.

    However, Lisa was right in that I moved into a tent in my backyard because of the undeniable mold toxicity in my house. She is also right in that I feel far worse living in my backyard with virtually no possessions than I did inside a house in Santa Cruz.
  8. soulfeast

    soulfeast Senior Member

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    The thing is, I think.... Erik seemingly got well just avoiding mold and ? and since I have yet to read the entire e book (skim, skip reading) I dont know if he referred to whatever he was avoiding with his MECU as ? or what he considered it.. stachy plumes, plumes???

    I dont think Eriks "healing" was holistic.. I think it was and is just about mold avoidance and that seeminly fixxed everything else but he still has to practice avoiidance to a lesser extent than he once did or he will get "hit" again.. I dont know how hard "hit" is now for him compared to the past.. how that has progressed.

    I dont know if he has viruses lingering.. Shoemaker or some researcher has identified viruses as contributing to low MSH and low VIP>. this could be why some people re,main biotoxin primed.

    Seemingly, the idea is to avoid mold, avoid ?, allow the biotoxin pathway to deprime then see about adding the antiretrovirals. Is that right? So in this sense this thread has turned into something other than what I started it for which was how to deal with Biotoxin Illness.

  9. Tree

    Tree

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    JenBooks, thank you for your thoughts. I agree that we are all individual and what is good for one of us is not necessarily so for the others.

    And true, there are many illnesses with similar symptoms and different primary causes. When I refer to "this illness" it is just in reference to ME/CFS, which yes, as you point out, has myriad symptoms and which we all struggle with in unique ways. This is an ME/CFS forum, and "this illness" refers to that disease and its symptoms found in the Canadian criteria. "This illness" -- or maybe I should say, "these illnesses" -- are tentacles of the bloody beast that has stolen our lives and affected us so severely. I believe the XMRV research, and that it is a big part of the picture, even for those who test negative to XMRV right now. (More sensitive and accurate testing will evolve, methinks.) I think a viral component is there for many with ME/CFS, but you are right, there are many illnesses at work here, with overlapping elements, and that, of course, is what has made this a nightmare to live with, and find answers for. But yes, I agree, of course we're not all the same, or experiencing ME/CFS the same way, and I never meant to imply that at all. Thank you for bringing up that point.
  10. jenbooks

    jenbooks Guest

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    My point about different illnesses is that biotoxins/mold will have a different order of importance for different people. It's just the way it is. And that will lead to different life decisions, and different responses to avoidance.
  11. Tree

    Tree

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    Agreed! Well said, Jen.

    And with that, I am now going to bow out and get back to some serious non-computer/resting time. It's been great reading everyone's posts and joining in a bit. Hope my posts didn't hijack the thread too much from its original intent, or add too much mud to the mud puddle. See y'all a bit later.
  12. soulfeast

    soulfeast Senior Member

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    Dont worry about hijacking the thread. I created it with a general title and its taken on a life of its own. I created a new thread called Biotoxin Treatment, hoping other addressing biotoxin illness will find it. The thread is for mutual support and sharing of info and experiences in the parameters of what is considered treatment and "mild to moderate" mold avoidance.. wish there was another way to phrase that.

    http://forums.aboutmecfs.org/showthread.php?9042-Biotoxin-Treatment&p=143066#post143066
  13. Wayne

    Wayne Senior Member

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    Diagnosis Unknown - Story of CFS Recovery

    Hi Tree,

    Thanks again for your comprehensive and interesting posts. There's much I would like to comment on, but don't quite have the energy and focus at the moment. I did want to post a link however, to a thread I started a short while back, that I think will give you some good information and insights you're looking for.

    Diagnosis Unknown - Story of CFS Recovery


    Best Regards, Wayne
  14. Tree

    Tree

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    Thanks, soulfeast and Wayne --

    Soulfeast, glad I didn't hijack things too much...these discussions sometimes meander into interesting and unplanned territory. I know I learned a lot from this particular thread, and I thank you and everyone else who contributed.

    Wayne, I'll be reading that story as soon as I am able. Appreciate the link! Take care and rest up.

    Wellness to everyone,
    Tree
  15. soulfeast

    soulfeast Senior Member

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    You didnt hijack at all! I hope the discussion continues. I needed to create a more specific separate thread for treatment of biotoxin illness and for those practicing more moderate avoidance. I think Joey has one for extreme avoidance to document his endeavor as well.
  16. dannybex

    dannybex Senior Member

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    Speaking of mold, and weather, and environments -- this is kind of selfish, but you might find it fascinating too.

    We've been having a lot of flooding in our area (not in mine, but around the Seattle area). My nephew lives up in Arlington, about 2 hours north, right next to a river that frequently spills over the banks, and did so big time 3 days ago.

    But his father-in-law built the house to withstand flooding. It's the yellow one in this clip. They've been through at least a half dozen bad floods with no damage, while surrounding houses are ruined. My nephew is interviewed briefly about half way through the clip...the house surrounded by the river's water:

    http://www.komonews.com/news/local/111750389.html?tab=video

    (for the sound sensitive, you may want to turn down the volume for the first 15 seconds -- they run an 'ad' that seems to me to be too loud)

    d.
  17. stefny

    stefny

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    Does anyone know if sapponins can be used instead of CSM/Welchol?

    They are supposedly a natural bile acid sequestrant. I bought a bottle of Yucca from Nature's Way to try.
  18. Wayne

    Wayne Senior Member

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    Ashland, Oregon
    Hi Tree,

    Sushi just responded to an inquiry of mine regarding LED laser energetic detoxification, and gave me a link to this practitioner:

    Douglas J. Phillips - Theocentric Holistic Healing and Consulting

    Here's a couple of paragraphs:
    I found his website quite intriguing, and anticipate following up on this in some manner. Finding a competent biological dentist to help me track down some focal oral infections has been a long and continuing goal of mine. I thought you might find this website and the description of his medical approach to be helpful as well.

    I hope you're doing well.

    Wayne
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Dr. Phillips seems to have a listing of the good biological dentists, so he might be able to help you find one nearby.

    Sushi
    Wayne likes this.
  20. Wayne

    Wayne Senior Member

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    Thanks for your posts this morning Sushi. I was wondering if Dr. Phillips ever tested you for focal infections, and if so, whether you found the testing to be helpful. -- Thanks.

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