CFS: Forebearance's thread 30

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, May 5, 2009.

  1. Forebearance

    Forebearance Member

    Hello everyone,

    I can't believe it's been 30 months since I've been writing these online journal threads!

    Well, this is the thread and the update from me for May 2009.

    I'm starting to get over the effects of having contaminated my household with stachy toxins from my houseplants. I still find things around that burn my skin and that I have to get rid of. Last night it was a pair of socks. I put them on and was like, whoops.

    My fingers still burn from my computer keyboard. It's the slowest object to denature. Except for textile items, which never seem to get rid of this particular toxin. Most other kinds of mold toxin will wash out, but not this one!

    I have found a park near my home that is like a little piece of wilderness at the edge of the city, so I've been going there as often as possible. If I can spend a couple hours there, I feel better for the rest of the day.

    Back when I lived in my moldy apartment, I used to sit outside in the yard, and that felt really good. But every time I went back inside it cancelled out the good I had done from breathing fresh air, so it didn't have a long-term positive effect.

    Now sitting outside seems to have a positive cumulative effect. I could swear that my pants seem looser every time I come home from the park. (It's a good thing because I need to lose weight.)

    Boy, it seems like my life is really dull compared to most people's lives. All I do is sit in the park and go on occasional errands and do the usual daily stuff of life.

    But it's better than having a crisis, so I'll take it! I'm grateful to have a car and a roof over my head and food and clothes.

    I've been trying to be supportive of Slayadragon as she works on writing down all the mold avoidance info she has learned. It's a big job.

    I ordered some Ave to try, because reading about it in another thread reminded me that I had wanted to try it years ago but had decided it was too expensive. Now I feel like it might be good for my immune system. (Now that I understand what's going on with my immune system better.) The Ave is supposed to calm down the overactive parts of the immune system, like the out of control cytokines I have.

    Maybe it will make me feel better. Who knows. I'm willing to try things that seem like they won't hurt me.

    I've been made sick recently by the fresh mulch that was put down around my rental complex, and the weed killer that was sprayed on the lawn yesterday. And even the flowering bush near by bedroom window is bothering me. So spring is apparently not a good time for chemical sensitivities. I'd better go to the park now!


  2. spacee

    spacee Member

    If you think your life is dull...just think of where you would be without learning all you have. amazing. I am happy for you. My life isn't much different. The kids are grown so it is just out for the errands and some exercise. I feel better inside the I reckon I don't have mold.

    Appreciation for what we do have is very therapeutic.

    I have seen on on the methy. protocol emails. You are going to be better! I do hope and pray.

  3. Forebearance

    Forebearance Member

    Thank you, Cindy and Spacee, for you words of encouragement and support! I appreciate it.

    It's true that I've learned a lot from having CFS. I know a lot more about health and my body and the medical system now. One gift that CFS gives a person is time to think. Most people consider that a luxury and I have so much of it!

  4. Forebearance

    Forebearance Member

    Hi Kelly!

    Yes, I think it's not the plants that are the real potential problem, but the dirt they are growing in. So unless you have really super bad mold, like the stachy I had in my temp apartment, it should work fine to take a cutting and re-plant it in fresh dirt.

    Just be sure to keep the old pot and dirt separated from the new pot and dirt, so dust from the old pot doesn't blow onto the new pot. Another idea I didn't think of at the time was to try washing off the roots of my plants before I re-potted them. Maybe that would have worked.

    Maybe if I sit under a tree in the park long enough, I'll reach enlightenment. hee hee

    Today I decided to go for a walk in a wild part of the park. The long grass and budding trees were irresistible. As a result of doing that, I found two ticks crawling on me afterwards. They were just regular stupid dog ticks, but still I hate them.

    I also encountered a very large snake. It was coming from the opposite direction, and we met face to face. The snake and I saw each other at the exact same moment and we both recoiled in horror. The only difference was that the snake hissed loudly. I bounded out of there in a burst of adrenaline. Geez! I haven't seen a snake that big out of captivity before!

    Um... so maybe I won't go walking in there any more. Maybe I'm a chicken when it comes to wilderness! lol

    How are things going for you?


  5. Waynesrhythm

    Waynesrhythm Member

    Hi Forbearance,

    I was up early this morning, likely due to the full moon which often disrupts my sleep. I used the "opportunity" to read some of your threads, starting with this one and going back to about 26. I've been wanting to do this for quite some time, but trying to read and integrate what I'm reading can be so difficult for me.

    I wanted ask you a couple of things. Have you considered whether you are sensitive to electromagnetic frequencies (EMFs)? I also feel better when I can get out of the city for a couple hours. I often wonder if I'm feeling better because I'm getting away from EMFs and other frequencies, or if it's just from getting away from the energy of city in general.

    Your threads have given me the incentive to research mold more indepth. I'm currently taking MMS as my main supplement I'm experimenting with. I'm doing it primarily for Lyme, but I have it in mind that it may help with mold as well. It's often hard to decipher what's going on, but it seems to have me in cycles of increased neurological stress, alternating with occasional bouts of lucidity. Ah yes, lucidity. So often overlooked in my earlier years. :)

    I think I may be able to sleep now, so maybe I'll wrap this up for now. I just wanted to take a minute to thank you for all your threads and posts in your journaling. I'm going to try to get back them again soon. It sounds like your journey is similar in many ways to mine, especially the hypersensiivity.

    I might just mention an experience I had once that still amazes me when I think of it. We had a friend visit once who was taking a tablet form of chemotherapy. I had been out of the house and started to settle in the kitchen to prepare something to eat. I soon started to become quite nauseous. And as I stayed in the kitchen I started to become quite agitated. So I finally left the kitchen and immediately began to feel better.

    Shortly after, I decided to go back to the kitchen and finish my food preparation, only to start feeling very sick again. I then noticed some odd looking pink tablets on the counter I had not noticed before. As I walked toward them, I could feel myself feeling even sicker. It was readily apparent to me I had been reacting to these pills (chemotherapy tablets).

    I often asked myself whether my reaction was a physical reaction, or some kind of energetic reaction? I finally concluded that it was primarily an energetic reaction. I'm curious, given your sensitivities, if you have had any similar type of experiences? I want to eventually start doing more EFT that might hopefully desensitive myself to these types of experiences. Unfortunately, the thought of undertaking anything new feels overwhelming at this time. I guess one thing at a time for now.

    Thanks again Forbearance for posting on your journey. I look forward to reading further.

    Kind regards, Wayne[This Message was Edited on 05/08/2009]
  6. Forebearance

    Forebearance Member

    Hi Wayne,

    It's nice to hear from you. I hope you were able to get back to sleep!

    I've heard of EMFs, but I am not able to identify if or when they might be affecting me. I haven't noticed a correlation between EMFs and my symptoms.

    It sounds like the MMS is doing something in your brain. I hope it turns out to be really helpful in the long run. I understand what you mean about how it's hard to decipher what is going on.

    Wow, that is interesting that some chemotherapy tablets made you sick! I don't think I understand what an energetic reaction is. Can you explain it a little bit more?

    You're so welcome for the journal threads. I hope they are helpful to somebody. They help me to remember all the things I've done and things I've tried.

    Also, I noticed that when someone on this board announces that they are well, a lot of people want to know exactly what the person did. I figured that by the time I am well, I won't remember exactly what I did. So I will be able to refer any interested people to my journal threads.

    Kind regards back,
  7. Waynesrhythm

    Waynesrhythm Member

    Hi again Forbearance,

    Energetic reaction is a term I came up with on my own. I guess I needed some kind of label to describe some of the reactions I've had to various things. A couple more examples:

    I felt well enough to go grocery shopping one day and was doing pretty well until I made my way to the canned seafood section. As I stood there mulling whether to get some tuna or something else, I all of a sudden started to get very queasy and nauseous.

    I decided I better go quick get a few essentials and get back home ASAP. But as I shopped, I began to stabilize again, enough so that I went back to the canned seafood section to see again whether I might want to get something. Interestingly, I had the same exact reaction. I surmised at the time that this particular section probably had the highest concentration of mercury of any section in the store, and that I was likely being affected by it.

    Another time I went to a homeopathic practitioner. After getting an appropriate prescription, I walked down to the room where they stored all their remedies, probably hundreds or more. Well, as soon as I stepped inside the room, I felt like I was in a sea of whirling energies. As soon as I stepped out, it ceased. Again, I felt I was being affected by the energies of the remedies.

    When you think about it, homeopathic remedies are essentially vibrational therapies. Normally, you take them under the tongue to get maximum benefit, but I can see where just having them within a few feet could have an affect on somebody who has an ultra-sensitive system.

    I read once that convention medicines and drugs, though not an intentionally vibrational therapy, also affects the body vibrationally in addition to the physical effects they have on the body. Interestingly, apparently these drugs can leave behind discordant residual frequencies in the body, long after the drug is discontinued. Another reason to be extremely careful about using any kind of drug.

    I read once that one of the functions of the physical body is to filter out harsh vibrations that abound in this world. I think it's the neurological system that is primarily responsible for this function. I often wonder whether some of the often bizarre health symptoms many of us experience are a result of this protective function being impaired.

    So I have a keen interest in energetic therapies of all kinds. From homeopathic, to flower essences, to light and sound therapies, etc. I think these likely have a good chance of positively affecting many of us who likely have disrupted electrical systems.

    One last little story. My partner is doing some training in EFT (she's now a licensed counselor), and so is watching a number of EFT videos. One that we watched together was of a man who had severe Environmental Illness for most of his life. A therapist was working with him and another woman.

    The therapist essentially had them hold their fingers in a specific configuration around the base of their nose for about three minutes. During this time, they were supposed to imagine all the symptoms they experience when they have severe reactions to extermal stimuli.

    Afterward, she had them do another three minutes of contemplation. This time they were to visualize, to the best of their ability, what they might have experienced, perhaps earlier in life, that made them vulnerable to these types of reactions. As I remember, the woman got some relief, but the man achieved almost complete remission of his EI (or MCS). And reported that the improvement had been sustained in the months following their session.

    When I see stories like this, and then also some of the amygdala training that some people are getting good results with, I think it all attests to the "possible" effectiveness of some of these types of therapies for some people. So I have an orientation toward this type of energy work. And I hope to some day be far less sensitive to various energies and environmental pollutants around me.

    I'm also hoping to greatly desensitize myself to the Lyme bacteria in my body and the neurotoxins they've released. In conjunction, I'm hoping they will also help with what I feel are significant mold challenges. My thoughts are that it might be far more effective to desensitize my body than to have to try to live a strict mold avoidance lifestyle. Don't know if it's possible, but I feel it's worth a try.

    I hope this wasn't too long. :)

    Best, Wayne[This Message was Edited on 05/08/2009]
  8. m1she11e

    m1she11e New Member


    You mention Ave, I think it must be short for something else? What is it?

  9. Forebearance

    Forebearance Member

    Hi Michelle,

    A new-ish dietary supplement named Avemar is sold in the US under the name Ave. It's supposed to have an accent over the e, but I don't know how to type that!

    [This Message was Edited on 05/09/2009]
  10. Forebearance

    Forebearance Member

    Hi again Wayne,

    Thanks for explaining more about what you mean by energetic reactions! Those were some interesting experiences you had. Now if only I understood what vibrations are.

    It sounds like you have an amazing ability to sense things in your environment. So you are trying to reduce this effect. And you're trying to reduce your sensitivity to biological neurotoxins like the ones made by Lyme bacteria and toxic mold.

    I hope the alternative strategies do this for you! That would be cool if they do.

    This brings up a question that some other people and I have been wondering about. Is it a good thing to reduce our sensitivities?

    You may know that the immune system has two halves: the complement or innate immune system and the acquired immune system. The two parts of the immune system usually work together to identify and remove things that aren't supposed to be in our bodies, like viruses, bacteria, poisons, etc.

    What is going on in people who have CFS from neurotoxin build-up is that the acquired immune system is not doing its job. It has a blind spot for certain kinds of toxins.

    So you have an internal conversation happening that is like this:

    Complement: Hey, there's something bad in here! Do something about it!
    Acquired: Duh.......what? I don't see anything.

    Complement: Seriously! There is something bad in this body. It's not supposed to be here! It's hurting us! Can't you see it?
    Acquired: Nope, sorry, I can't see anything bad.

    Complement: ARGH!!!! Well, my job is to alert you to dangerous things in the body, so I'm going to just keep doing my job and yelling at you louder and louder.

    So then the person gets sick because of the toxins and because of the complement immune system going into overdrive, trying to make the acquired immune system pay attention.

    So the question is: do we want to calm down the complement part of the immune system? Do we want to make it shut up? I mean, it's very over-activated, but it's also right. There really are bad things in the body: neurotoxins.

    Calming it down would bring some relief to the person involved, but it wouldn't solve the underlying problem of the presence of toxins.

    Dr. Shoemaker's idea was to use Questran (cholestyramine) to remove some of the toxins from the body, basically doing some of the acquired immune system's job for it.

    Mold avoidance seems like it is trying to put the body in an environment where there aren't any more neurotoxins coming in from outside. So at least the problem isn't getting worse. And that seems to help the complement immune system calm down some, and somehow it seems to help the acquired immune system to be able to kick out some of the toxins better than it could before.

    I'm not sure exactly how mold avoidance works on a biochemical level. The experiments with it have been on a purely practical level. Maybe Dr. Shoemaker understands. Maybe he'll write another book and talk about it.

  11. Forebearance

    Forebearance Member

    Well, I received the Ave but i haven't tried it yet. It's supposed to be taken hours away from both food and supplements, and I'm having trouble finding a time like that.

    For the past couple weeks I've been eating three multi-berry chews a day. I knew they were powerful antioxidants, but they seemed pretty innocent. The active ingredient in them is aronia berries. But around 4-5 days ago, I started feeling like I was going into a too-fast detox. I cut way back on my methylation supps and then stopped them completely. It felt a lot like when I took too many methylation supps! But the detox didn't stop.

    Then I realized that it was the berry chews that were causing me to detox. Boy, that was unexpected. So note to everyone: beware of aronia berries. They are powerful little buggers.

  12. Forebearance

    Forebearance Member

    Well, maybe it's not the berry chews. I'm still detoxing like crazy. This is scary, and I can't figure out how to slow it down. I guess I have to hang on for the ride. What else could be causing it?

    On the positive side, I had my annual thermogram today and it was normal! No more signs of the heat in the left breast that meant it was heading down the road to breast cancer! woo hoo!

    One of the main reasons I decided to move and do extreme mold avoidance was because I felt like staying in a moldy environment would increase my risk of getting cancer or heart problems and would increase the risk of my living a shorter life than I should.

  13. richvank

    richvank New Member

    Hi, Forebearance.

    Sorry about the heavy detox.

    I just looked up aronia berries (chokeberries) and found out that they are rich sources of folate (25 micrograms per 100 grams of fresh berries), and that the predominant form of folate in berries of all types is 5-methyl tetrahydrofolate, i.e., the same as FolaPro! I assume that the berry chews contain dehydrated berries, so their FolaPro content on a per-gram basis would likely be quite a bit higher than for the fresh berries. So I'm guessing that you got a pretty hefty dose of the active form of folate.

    If a person totally stops taking in folates, folate deficiency occurs in one to four weeks, so I'm guessing that the timescale over which you will get relief may be on the order of a couple of weeks or so. That's the sort of time that has been reported by people who took more than the recommended FolaPro dosage before the detox became more tolerable. As you said, I think you will just have to ride it out. Sorry about that. I'll have to put out an "all points bulletin" about watching out for berries on the methylation block treatment, I guess. On the other hand, are they cheaper than FolaPro? :)-)

  14. AdirondackScarlet

    AdirondackScarlet New Member

    I smell mildew or mold in my bedroom at times
    I try not to sleep in it much.

    What's AVE
  15. AdirondackScarlet

    AdirondackScarlet New Member

    I have it even grocery stores bother me with cleaning isles etc
    you name it. Uggghhhhhh I get physically ill.
    Noise makes me sick and edgy.
  16. Forebearance

    Forebearance Member

    Thank you so much for doing that, Rich! I have been too flattened to do any research. Everything makes sense now. The detoxing crept up on me very gradually, so it makes sense that it would fade gradually.

    In case you are interested, the company that makes them is called Mae's Superberries. They cost $20 for a generous bag, so maybe they would be cheaper than FolaPro. They are good enough to eat like candy, so it is lucky for me that I was only eating three a day.

    Some people take them for other health issues. I can't remember if it was for lowering blood pressure or lowering cholesterol. One of those.

    On a side note, when I was having my thermogram I told the thermographer that I was detoxing like crazy and just for fun she took a picture of my head. It showed all my sinuses lit up like they were really hot.

  17. Forebearance

    Forebearance Member

    Hi AdirondackScarlet,

    I'm sorry to hear about the mold smell in your bedroom!

    Here's the thread that explains what Ave is:

    I think that chemical sensitivities can be correlated with neurotoxin poisoning. I've had them for many years, but they have gotten a lot worse while I've been working on getting the toxins out of me.

    You might be interested in reading the book called "Mold Warriors" by Dr. Ritchie Shoemaker. It explains how neurotoxins from toxic mold, Lyme bacteria, and a few other things can cause CFS.

  18. AdirondackScarlet

    AdirondackScarlet New Member

    I will check it out.
    Thank you for taking the time and effort to provide the info you gave me.
  19. Waynesrhythm

    Waynesrhythm Member

    Hi Forbearance,

    LOL, thanks for elucidating on immune system function by way of your little story. I got a good chuckle out of it. And it was educational as well. I'll definitely keep it in mind as I move forward with some of my EFT experiments.

    RE: """This brings up a question that some other people and I have been wondering about. Is it a good thing to reduce our sensitivities?"""

    *** In my case, my answer would be yes.

    But I differentiate between being sensitive and being aware. From my perspective, being overly sensitive means becoming vulnerable to the effects of certain things in our environment, both internally and externally.

    Being aware of subtle things in our environment can be very beneficial to protect ourselves, but I don't believe has to reach the point of being overwhelming or totally debilitating.

    In my case, my best guess is that the Lyme bacteria and the neurotoxins they produce have significantly affected my brain and neurological functions. In my post on "leaky brain syndrome", it was pointed out that these neurotoxins damage our blood brain barrier (BBB) and allow things to enter our brains that shouldn't be there and create "cerebral allergies".

    I think it's likely these cerebral allergies are creating the hypersensitivity in my system. And I feel I really want to try to correct the cause and the effect of this dynamic.

    BTW, sorry to hear you're experiencing some a major detox from the aronia berries. Just wanted to mention that anti-oxidant rich berries like aronia, gogi, and others apparently can be very helpful for the supporting the blood brain barrier. I've eaten a lot of gogi berries in the past, and always found them to be supportive. Perhaps I should get back to them.

    Good luck traversing your detoxification wind-down.

    Best, Wayne

  20. Elisa

    Elisa Member


    Just wanted to sau Hi and tell you I am happy you have found some places (outside) for peace and rejuvenation!

    I have installed graham-stetzer filters in my entire home and also measure EMFs when I am out. I am fasinated by the research and have had a very positive response so far - better sleep (less waking up all night), better color, lowering of fever, more energy (YEAH) - but I have only had them in a week or so - so I will report back.

    I am also doing Donna Eden's energy medicine routine and work with an EFT master once a week. So this is interesting and powerful.

    I am so glad to touch base with you - I haven't been able to in sooo long!

    God Bless,

    [This Message was Edited on 05/14/2009]