CFS: Forebearance's thread 32

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Jul 7, 2009.

  1. Forebearance

    Forebearance Member

    Hi everyone,

    Another month, another thread!

    You know, there was a time when I forgot to take any Candidase or Virastop for a week and a half, and I felt it. It's funny how I take them for granted now, but they really have helped me in a number of situations. And they're good general maintenance.

    Right now I'm experiencing some slight moments of facial numbness, and some moments of hearing my pulse pounding in my ears. Actually, the pulse in ears phenomenon happened first, and it's moving on to the numbness. I suspect it might be something that has been living in my head and is fighting with the colloidal silver. Perhaps it's Lyme.

    I should go check the Lyme board and see if anyone reported those symptoms while fighting Lyme to the death.

    But in the end it doesn't really matter what it is that is fighting back. It just matters that I kill it and get rid of it. I'm sure it's some opportunistic infection that I picked up somehow.

    Taking a little bit of colloidal silver every day has been undramatic. There haven't been any big Herxes. But I do think it is gradually accomplishing something.

    On the mold front, my family is supportive up to a point. They don't understand the concept of hyperreactivity. I guess it sounds very strange to someone who isn't going through it. I wish I had gotten a well-understood illness instead of this! Who would ever choose to have something as crazy as chronic mold illness??


  2. krock

    krock Member

    Interesting... I always hear my pulse pounding in my ears, especially when I am lying down. I just figured it was another symptom of this DD.
  3. Debra49659

    Debra49659 New Member

    I truly admire you :) You are a fighter, and not even thinking of giving up the battle! I am so happy that you are making progress in the battle over CFS. For someone who has struggled for so long, you deserve a standing ovation for never quiting the fight!

  4. Forebearance

    Forebearance Member

    krock, I'm sorry to hear that you always hear your pulse. That sounds worrying. Do you have Lyme, by any chance? I find hearing my pulse to be kind of scary, because I haven't had it happen before.

    Deb, thank you so much for the moral support! It's so nice of you!

  5. Forebearance

    Forebearance Member

    Well, moving on to the next crisis. My home is developing a moldy smell. I can't figure out if it's coming from the refrigerator, the washer, or the bathroom sink. They are all very near each other. At least I've figured out that it's not coming from the furnace/air conditioner! Whew!

    This developing mold explains why I feel bad when I shut up the house and run the air conditioning. But leaving the windows open and letting the house become hot and humid doesn't help the situation, either.

    I've been crabby and tired and achy. Now it's gotten to the point where I hurt even with the windows open. ARGH!!!! My refrigerator has an automatic ice cube maker and I am suspicious of the water line. I sure wouldn't choose to have one of those if I ever bought a refrigerator.

  6. Forebearance

    Forebearance Member

    Hi Kelly,

    Thank you so much for the sympathy!

    I think the only thing that will help is if I find the mold and get rid of it. I think an air filter would help if mold spores were just blowing in the window.

    I put some plumbing probiotics down the sink drain and it helped, but there is still something in the back hallway. Curses.

    You get that pulse thing, too? I have been feeling like my adrenal hormones are low. Maybe it's related to that. Relaxation does help the adrenal glands to heal.

    That is great that Colloidal Silver breaks up biofilms! That is exactly what I would need if I had that MARCONS in my nose. Since many people with mold illness have that, I probably do too.

    I have been using 20 sprays a day under my tongue. !0 in the morning and 10 at night.

    I hope you are hanging in there!
  7. Slayadragon

    Slayadragon New Member

    A leak in the icemaker line in my Florida condo is what caused the mold growth in the kitchen there.

  8. krock

    krock Member


    I have wondered that myself. I had a lyme test last year that showed positive for IgG P41 and IgM P23. The doctor that ordered the test said that having only 2 bands positive meant negative for Lyme Disease. However, another doc that I showed the same results to said I was positive for Lyme if any band was positive, but he did nothing to treat it.

    Many things about this DD are scary. I would love to find out conclusively if I have Lyme or not, and if so to treat it.
  9. krock

    krock Member

    I have the susceptible genes for both mold and lyme. My C4a was very high, over 32,000. Never had CD57 test - what is that?

    Wish I could find a local doctor to help me put all this together and treat the right illnesses.

    Where are you going to find 'godforsaken wilderness'?
  10. Slayadragon

    Slayadragon New Member

    Kelly, did you purchase the Townsend Letter online? Which article is it? How would you suggest I access it?

    Also, who is your doctor?

    Here's a wholly original theory about Lyme, based only on my own experience. So take it in that context.

    What I wonder is whether the toxins that Lyme makes only are problematic for people insofar as their systems are being inflamed as a result of exposure to mold toxin.

    Killing Lyme has been hell on earth for me, but only when I've been "under the influence" of mold. If I'm really clear of mold, I can take all the doxy on the planet and have no negative response.

    One time when I was being hit with mold and taking doxy, I tried to describe what it felt like. The analogy I came up with was "pouring salt into a wound."

    And that made me think of something.

    What if the toxin that Lyme makes doesn't bother normal people? What if it's only a problem for those of us who are being affected by mold?

    Mold inflames the brain and nerves. It doesn't seem unreasonable to think that some chemicals might be especially damaging to an inflamed nervous system. And the idea that Lyme might do this makes some kind of intuitive sense to me, considering that it actually tastes salty.

    Maybe even a little bit of the chemical that Lyme makes is really bad for those of us whose systems are inflamed from the mold.

    That would explain why it is that CFS sufferers can come up as not having any appreciable amount of this stuff (on standard Western blots) but nonetheless be affected by it.

    And it would explain why they have such terrible herxes. Part of that may be that the immune system isn't strong enough to work with the doxy (or whatever) to get rid of it, but part of it may be that even a little bit of the poison that's released is really horrible to all those inflamed nerves and brain cells.

    I personally think that a very high percentage of the population has been exposed to Lyme disease. It's just that, for most people, the bacteria don't cause very much harm, I think.

    If I'm right about this, then going to the trouble of killing Lyme and then embarking on mold avoidance is sort of a bad strategy.

    If you're not going to do mold avoidance, killing off Lyme (in whatever painful way) might be useful, to get the chemical loads way down for the long term.

    If you are going to do mold avoidance, then killing off Lyme may not be necessary if you don't have very much of it. Or if you do have a lot of it (as I did when I got an acute Lyme infection just after starting extreme avoidance), killing it off won't be that hard once things are under control.

    This is just a thought though. Kelly usually likes these kinds of purely speculative thoughts, so I thought I'd throw it in just for her. :)

    Love, Lisa/Slaya

  11. Slayadragon

    Slayadragon New Member

    Hi Kelly,

    I'm actually really sympathetic with regard to your situation with your mom. And I think that with that in mind, you're doing all the right things now.

    I feel okay about you because you don't seem to be on a downward trajectory. I'm a lot more concerned when I see people getting worse and worse.

    Hopefully you eventually will pursue addressing the mold, but doing it at the right time and in the right way is essential!

    What I meant with the Lyme is that I see an awfully lot of people who go through real hell in killing it. A lot of doctors would have had me do that, back when I was still living in a bad place.

    This would have been a mistake. Likely it would have been a mistake regardless of whether I ever figured out that the mold was an issue. But in light of my subsequently pursuing mold avoidance and having Lyme easily become a non-issue, I'm really glad I didn't pursue it back then. That would have been a lot of suffering for nothing!

    I'm of the impression that you yourself can take antibiotics without real negative impact. That's another clue that makes me think that your house may not be really terrible for you. (Just living in Texas likely would be enough to keep you sick, I suspect.)

    Insofar as they don't make you worse with horrible herxes, I think that they're a fine thing to do.

    Love, Lisa

    P.S. How would be the best way for me to access the info in the Townsend Letter? Which issue is it?

    [This Message was Edited on 07/12/2009]
  12. rampartrange

    rampartrange New Member

    Hi Forebearance, Slaya, Kelly and everyone else !

    Margie and I just got back to Colorado (love this high altitude!) after a trip to Pocomoke City MD to see Dr. Shoemaker.

    We were astounded by Dr. Shoemaker, he is brilliant !

    Right now, no special meds (i.e. Advipidal...) just another month of CSM until the bloodwork comes back, then subsequent treatments will of course, follow. Feeling hopeful :)

    Two Topics of interest:

    (1) tadalafil

    This link is highly interesting:

    look for "Treatment of CFS patients with low levels of vasoactive intestinal"

    Results: No adverse events occurred aside from headache in 16% that did
    not prevent finishing the tadalafil protocol. Change in erectile
    behavior was noticed in 93%. Symptom reduction occurred in 90%; PAP
    showed improvement in 83%. VIP levels rose in 66%.

    So "tadalafil" brand name Cialas

    Some links:

    Seems What is important is whether the drug has been approved by FDA for pulmonary arterial hypertension (PAP) or not.

    That does appear to be the case for

    Levitra (Vardenafil)
    Viagra (Sildenafil citrate)
    Cialas (Tadalafil)
    Resvatio (Sildenafil citrate)

    It is the PDE5 inhibitor aspect that is key.

    But I cannot get clear understanding on how this relates to PDE4 inhibitor...

    also, Revatio

    This is also Sildenafil citrate, but less well known...

    The dosage for pulmonary arterial hypertension (Revatio) is one 20 mg
    tablet three times a day. Revatio pills are white, round, film-coated
    tablets imprinted with "RVT 20" embossed on one side.

    So pretty much same as Cialis.

    While, clearly I CANNOT suggest that any of this be followed, you can come to your own conclusions and / or actions.

    (2) EPO
    The other article is about EPO


    "Treatment of CFS patients with elevated C4a using low dose"


    Which can be simulated by exposure to high altitude.

    We live at 8500', but have easy access to 14000' on Pikes via the roadway, trails or even train, so Margie is going to hike the flat ridges at 13,000' to get some boost.

  13. Slayadragon

    Slayadragon New Member

    Hi Kelly,

    That EMF angle is indeed really interesting to me. On the Locations group that Paul Beith runs, two of the main suspects for what makes a location good are EMF's and mold. The idea that EMF's might be important as a result of their effect on the mold is very cool.

    I will call Townsend tomorrow and see how soon they can send me that magazine. At the moment I'm in Wyoming and am not sure how long I'll stay here. But maybe waiting for the magazine will be reason enough to stay for a little while.

    I used to think that places went bad only as a result of having mold grow in them. The idea that a "supermold" could be so bad that it would make any place unlivable never occurred to me. My car is an absolute mess from the supermold right now though. The little Casita trailer I just bought still feels really good, but that doesn't mean it will stay that way.

    This is a dangerous way to live! The more I think about it, the more I think that the only reasonable way to do this is to go to the super-godforsaken desert upfront, detox like crazy, and get the reactivity down. That does seem to work, based on my experience. It's hard to get the motivation and situation to do that, but having it be for a set period of time makes it feel manageable. Living in fear that things are going to crumble around you is not manageable, long term.

    It's nice to have you writing again. Like many of us, you've had a hard month or two!

    Love, Lisa
  14. Slayadragon

    Slayadragon New Member

    Hi Rock and Margy,

    I'm so happy to hear you had a good visit to Dr. Shoemaker. I'd like to hear more details, if you ever have time to summarize them.

    Did he talk to you about using epo in drug form rather than just through getting to a higher altitude?

    I've been thinking that if I were going to try something new at this moment, that is the one thing that I might consider.

    I believe that the body does not like to detoxify until C4a is normal. But insofar as I stay in really clear places, the toxins come out like crazy. And after several months of that, my reactivity is going down. I can tolerate a lot more mold than I used to be able to a few months ago without getting sick.

    However, now I've contaminated my car with the supermold. So it's a lot harder for me to keep C4a down low enough to do good detoxing. Plus it would be nice to be able to do a few more things in general.

    So maybe if I used the epo, it would help me to keep detoxifying fast during this key time. I wouldn't be inclined to use it permanently. Just for a little while to get me over this last hump.

    The VIP stuff is interesting too. I'm going to have to read more about that.

    I'm really glad you're feeling optimistic! Please keep posting your progress here.

    Best, Lisa/Slaya
  15. Slayadragon

    Slayadragon New Member

    Hi Kelly,

    I wrote a summary of my experience with the supermold for you on Google. Maybe I should post it here too.

    I think the supermold is a particular strain of mold. Probably stachy, though I'm not sure. Whether it really has anything to do with fire retardant chemicals is just conjecture on my part.

    I was in Lake Tahoe and got zapped by the supermold there. I wish I'd known how problematic it was, since then I'd never have let the car sit in it (or stopped in Lake Tahoe again at all!) for a number of hours. Dealing with it certainly been a good learning experience though.

    I suppose the worst thing that will happen is that I'll have to sell the car, buy a replacement car, and get rid of some of my stuff. I'd like to avoid having to do that though. This is so blasted expensive that I'm getting really sick of that drill.

    Possessions that sat in the supermold for a few hours became more problematic than stuff that sat in my moldy house (with the "regular bad mold") for years. It's only because my reactivity is so much lower now that I'm surviving relatively intact. This stuff is vicious!

    I think that as is the case with regular stachy, these spores are water soluble. The mycotoxins bond permanently with everything, of course. But getting rid of the spores is something.

    The car's gotten caught in good rainstorms, so I'm guessing the outside is reasonably okay. The inside is really contaminated though.

    Like an idiot, I still haven't addressed the inside. My brain wasn't working very well for a while, and it seemed like a lot of effort when I was still out it and also preoccupied with buying the Casita.

    So what I'm going to do right now is go to a campground and take everything out. I'll use the outside shower of the trailer to wash everything that wasn't sealed up in the car and throw away everything was exposed and that can't be washed. (There's a reason that everything I own is in plastic bins!) Then I'll take the car to get it thoroughly vacuumed out.

    Vacuuming is much less good than washing, but it should help some. Hopefully if I do all these things, I'll stop getting my clothes and hair quite as contaminated when I sit inside it for even a short period of time.

    There's no way I can host CFS sufferers on trips to the wilderness now, unfortunately. The car is a stretch even for me. For someone who was still severely reactive, it would prevent any wellness whatsoever from being obtained.

    Which means, of course, that people who are super reactive (e.g. severe CFS sufferers) and who ever get exposed to any of the supermold will never get well regardless of how good their house is. This stuff nullifies everything.

    I suspect that includes you, since the muck in Texas seems to include at least a bit of the supermold. There may not be hot spots in your town per se, but the plumes blowing around that state seem (from what I've heard) to have a big component of them in them.

    There are enough places left in the U.S. that don't have supermold that an extended escape to the wilderness should be possible. And insofar as people can get their reactivity down during those escapes, conceivably they might be able to deal with a little supermold on occasion if they're supercareful about it (meaning, don't let your stuff be exposed to it for hours and hours). It does make the whole problem a bit more challenging than I used to think though.

    Forebearance got a little bit of what is clearly the supermold on her belongings a while back, and recently got it on her patio table outside. She then oiled the patio table. Water sat on the oil and the mold started to grow. She thus got forced from her apartment. (She's more reactive than I am, so this stuff has a bigger effect on her.)

    Right now she's at a Hampton Inn but thinking of giving camping a go in a day or two. Nothing like an emergency situation to make the wilderness look attractive! That's what happened to me back in February when my roommate's house in Las Cruces went tremendously and suddenly moldy on me.

    I'm keeping my fingers crossed that this will be a good thing for her. It's sort of amusing to see her following in my footsteps.

    The mold/EMF connection is really interesting to me. Paul Beith from Locations has gotten increasingly interested in the mold, and I've been wanting to provide him with enough information that would make him give avoidance a go. (Though whether supermold is an issue for him in whatever country he's at, I'm not sure. I need to ask him about whether he gets heart symptoms.) I just have to figure out how to get that publication delivered to me out here in the Wyoming wilderness, since I'm sort of disinclined to stay here forever!

    Love, Lisa

  16. rampartrange

    rampartrange New Member

    Hi Lisa, Forebearance and everyone else !

    Pocomoke City trip report

    Margie had hoped she was getting Aviptadil on this visit, which I thought unlikely since this is her first time to see Dr. Shoemaker. (After all Aviptadil is not FDA approved for general use.) So Dr. Shoemaker has suggested a month of CSM (she has done that for 2 months last fall) while the analysis of the blood tests is done. It is a bit unclear, but it sounds as if he will then have conventional treatments for lowering c4a, and MMP9 and raising MSH and VIP.

    He didn't discuss taking the drug form of Epo, but stated that living and hiking at higher altitude (reduced oxygen) forces the body to produce more Epo naturally.

    Now, (OK, slightly off topic...) from the travel perspective, Pocomoke City is a small city in Maryland's DelMarVa penninsula. Lodging at Holiday Inn express in special MCS rooms was quite nice ! While we flew in to Richmond VA (fantastic small airport) I think Norfolk VA would have been better. We found that dining (i.e. seafood) was quite good. Looking for places to walk a few daily miles was hard. Chincoteague national seashore was buggy to the extreme away from the beach, but people crowds on the beach were also extreme. On subsequent Pocomoke City trips perhaps it will be in the off season and less crowded.

    Margie and Rock.
  17. Forebearance

    Forebearance Member

    Hi everyone,

    Thank you so much for the Lyme information, Kelly!

    Thank you so much for the report on your trip to see Dr. S, Rock!

    How interesting that medicine for ED might be helpful for us.

    Well, I keep trying things on the area where the mold was growing in my back hallway, and I still get a moldy smell in there. Rats.

    In the meantime, a bigger crisis occured. I hope that my experiences can be a cautionary tale, and hopefully help other people to avoid some of the mistakes I've made.

    Last July, my temporary apartment got contaminated with the worst toxic mold I've ever encountered. I've been calling it "Biltmore stachy" after the apartment complex, but now we seem to be calling it supermold, because it exists in other places too. I think it might be the same as the stuff Lisa ran into in the Lake Tahoe area. It behaves similarly, anyway.

    I put everything from that apartment into storage but the houseplants.

    This crisis of mine happened because of decisions I made. My first decision was to try to save my houseplants. I tried re-potting cuttings of them, but wasn't careful enough and mold spores came along with the roots and the soil stuck to the roots.

    Then I decided to set the pots of cuttings on my teak table, which was sitting out on the patio. I couldn't keep the plants. They made my patio and house toxic. After recovering from that, I thought the toxins and mold spores had weathered off the table with time. After 3-4 months, I decided to put another coat of oil on the table to keep it from getting bad looking.

    Oiling the table released another round of toxins. Then later on it rained a lot. Water sat on the table. Last Friday, I was out on the patio and saw hundreds of dots of baby mold growing on the table top, where water had been sitting. (because the table was freshly oiled)

    I decided to scrub the mold off with Bon Ami while wearing lots of proective gear. I would not normally mess with toxic mold, but in this case there was no way to contain it or get rid of the table and I was worried about letting it grow. It might have contaminated my house worse than it did, or spread to the neighbors' houses. The Bon Ami seemed to kill the mold. Later I put an enzyme treatment on the table top to make sure it was not re-growing.

    My reaction confirmed that this was the super stachy. At first I didn't get too sick, but I had a feeling I needed to get out of my house before I became really reactive to it. Last summer I made the mistake of staying in the temporary apartment for days even though I was in increasing amounts of pain.

    I don't feel like trying to tough it out any more, and I knew that the smaller my exposure was, the less the long-term effects would be. At least I've learned a few things.

    So I've been staying in a hotel, becoming more and more reactive. I can't use my computer now. I think I need to go try camping and get really clear and see if I can get my body to calm down.

    I don't know of any way to wash the toxins of this mold off! The spores, sure, but not the toxins. Most toxic mold will wash out of clothes in one washing with soap. This one doesn't. I get heart pain from clothes that I just wore in my house and have washed twice.

    The Salvation Army picked up my table yesterday and took it away. They really were my salvation, doing it on very short notice.

    Tomorrow I plan to go out to the local state park. I am terrified of camping, mostly because I hate bugs and I don't know if I'll be able to sleep on my camping cot. Gulp.

    Also, I have basically no clothes. I wish I had had an emergency pack of basic items like underwear etc. I did have some extra shoes and shirts in tubs in the garage, so that helped.

    This is incredibly expensive. I don't know how to redeem items that have been contaminated with this super mold, so I keep buying new ones and throwing old ones away. I'm on my third hair brush, I think. Because last night I plugged my laptop in to the outlet in my hotel room to re-charge it and it contaminated the whole room. Sigh.

    If I had a spare $4000, I would definitely buy that 10 gallon ultrasonic cleaner I've been eyeing and try washing things in it. It would be big enough to wash clothes in.

    I'm not finding my situation very amusing. But at least I'm not panicking as much as I did last summer. And I'm not doing as much "woe is me" thinking.

    At this point, I don't know if I'll be able to go back to my house or not. Maybe I'll try being away for a couple weeks and then see how it feels.

  18. Slayadragon

    Slayadragon New Member

    Hi Rock and Margie,

    Thanks for giving us more information!

    Knowing about Pocomoke City is really a good thing. It should help other people who decide to go there in the future.

    For people who are still getting exposed to some toxic mold, keeping chemicals at a low level is important. Somehow even low mold exposures keep the MCS going.

    If I can keep my mold level low enough, chemicals are not a problem for me. So I'm more concerned with whether hotels are contaminated with mold.

    (Most CFS/mold patients already are getting hit with more mold than they can tolerate, so a small amount in a hotel isn't anything special for them. So my issue at this point is different!)

    My experience is that Holiday Inn Express (especially the newer ones) tends to be pretty good with regard to toxic mold. Not nearly as good as Hampton Inn, but better than just about anywhere else.

    Sometimes the rooms do get moldy, but the individual air conditioning systems (rather than HVAC) keep it pretty well contained rather than spreading it all over the building. Trying different rooms can be useful.

    My main problem with Holiday Inn Express is pre-contamination. Their building materials must be stored someplace moldy. It's not horrendous, but it's enough to keep me from sleeping well.

    Hampton Inn is better. Amazingly, they have very little pre-contamination. They seem to be very careful not to let anything get moldy, and their HEPA filters in each of the rooms are replaced regularly. (It may be after each guest, but at least weekly.)

    I'm talking about their newer hotels though. Maybe built in the past 6 years or so.

    I think that Hilton got so slammed by mold in their flagship hotels that they decided to create a hotel chain that wouldn't possibly have this problem. Their hotels are so consistently good that I think there must be people there who REALLY know what they're doing. Eventually I'm going to see if I can talk to some people there and try to get them to 'fess up.

    I suppose Dr. Shoemaker has examined the Holiday Inn Express there. His mold sensitivity is apparently pretty high, so he probably would be able to tell if somewhere had a big mold problem. But I'm not sure if he's gotten it high enough to be able to detect small amounts of mold that would bother Forebearance or Erik or me.

    Did he talk to you at all about hyperreactivity to very small amounts of mold toxin causing the C4a problem?

    Why is it that you're so interested in Aviptadil in particular? Does Margy have really bad MCS issues? Or is it because you think it would be helpful in general?

    Please please keep in touch!

    Best, Lisa
  19. illroy

    illroy Member

    I wonder if you could put an air bed under a tent and avoid the out gassing that bothers you. It could be on top of a tarp if necessary to avoid getting punctured. Coleman air beds are relatively inexpensive and fairly durable in my experience.

    FWIW, sickbuildings #67574 is about mold toxins, and says ammonia destroys some. I don't know if that is valid.

    If you have a link to the ultrasonic cleaner, I'm curious as to how they are constructed.

    Don't worry about the bugs. I'm sure they will love you. We all do. ;-)

    Good luck
  20. Slayadragon

    Slayadragon New Member

    Hi Roy,

    That's an interesting post. Branislav (who is from some Eastern European country) is pretty knowledgeable about the mold.

    At one point, Branislav discussed a mold that sounds to me like the supermold. Branislav was afraid to send Erik anything that was contaminated with it because of fear that he would introduce it to the United States and cause terrible destruction.

    That's going a bit too far. As if it's not already here!

    You read SickBuildings some. Do you know who the four other people in the group are that have cultivated their sensitivity to mold toxins enough that they can identify contaminated objects?

    Probably I should read SickBuildings more often. Sometimes I get discouraged with that group because few of the folks there pursue avoidance to enough of an extent to get any better....meaning that the tone there tends toward "nothing can be done." And I haven't noted them to be any happier about hearing that I've gotten well from CFS/mold than they were about hearing that Erik had gotten well. I suppose that in their eyes, hope is a dangerous thing?

    There is some interesting information on there occasionally though. When I get a chance, maybe I'll spend some time there again and see if anyone is saying anything of value.

    How are you doing these days? Do summers in Indiana feel any better for you than winters?

    Best, Lisa