CFS: Forebearance's thread 26

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Jan 2, 2009.

  1. Forebearance

    Forebearance Member

    Hi all,

    I am spending most of my time in my new place figuring out what is bothering me.
    I have cleaned out the drain in the master bath, so there is no mold smell coming from it any more.
    Then I had to get rid of my futon, because it was bothering me.
    Then I covered my mattress with thick, crunchy plastic because it was off-gassing and bothering me.
    Geez! I am so sensitive to chemicals.
    Now I am tracking down some piece of new furniture that is bothering me. It's between three items.
    I'll have to try putting each one of them outside and seeing if I feel better.
    This is HARD.

    I continue to take things to detox. I'm really, really tired but no longer half-dead.
    I added nutritional iodine to help support my thyroid. I think that the cholestyramine probably sucks out some hormones, because hormones are fat-based.

    I still take soluble fiber to help me detox.
    I tried taking a bath with some Kombu seaweed, which was supposed to be a detoxing treatment. It was all right. It made my bath smell like sushi. I don't know if it detoxed me or not, but it was fun anyway.

    I thought the new car smell of my car had worn off, but I am aware of it again. Other people say that heightened chemical sensitivity is a sign of detox. So it appears I am going down the usual path.

    It is still hard to comprehend that the solution to my CFS is to live this odd mold avoidance lifestyle! I am into it now and I can't quit! This is sooooo strange.

  2. Heyygirl

    Heyygirl New Member

    You are doing a fabulous job breaking down your environment and it's effects on you.
    Just a suggestion....cholestyramine DOES suck out hormones....I only take it in the afternoons and evenings LONG after I have taken all the hormones and nutritional suppliments in the early mornings and noon. It may result in the detox taking more days to do it's thing, but I need those hormones since I have no thyroid. the Iodoral should help with the thyroid uptake as well. Have you been checked for soluble fibrin monomer?

  3. Forebearance

    Forebearance Member

    Hey, Cheryl!

    Thanks for the suggestion!

    Aha! It's nice to have confirmation that the csm sucks out hormones. I have also been taking it as far away from my necessary hormones and supplements as possible. Yeah, I am also detoxing very slowly, compared to how Dr. Shoemaker prescribes it. But I know my liver is a weak spot of mine, and I want to go at a pace it can handle.

    I haven't been checked for the soluble fibrin monomer. Is that the stuff that clogs up the blood vessels? If so, the Virastop I take should take care of it. Virastop eats fibrin for breakfast.

    I think I have figured out what is going on with me. I think that the seaweed bath I took must have loosened up a bunch of toxins and they have been bouncing around inside my body ever since, waiting to be excreted. It has been extremely painful, and scary.

    At the same time my chemical sensitivities have gotten much worse. I had to remove my new wood furniture from my home because the fumes from it were making me sick. As I understand it, that is also a sign of detox.

    Whew. If I survive this, I will be much more careful about taking those seemingly innocent seaweed baths in the future. I've been using all the tricks I know to ease the detox symptoms: eating fiber, drinking vinegar in water, taking Vitamin C, taking cholestyramine, taking molybdenum, taking a Virastop and a Candidase at the same time. None of my usual tricks is working very well!

    And I am going to the bathroom a lot. So that's definitely a detox symptom. I guess it will just take time to get through this. The pain is getting a bit less, but it still feels like my intestines are tied in knots.

    At the same time, I am feeling the most delicious sleepiness. It feels very healing to sleep.

    I'll go see my massage therapist tomorrow, and I'll see what she says about my feet. She can tell how I'm doing by how my feet feel.

    I think what's scary about this detoxing process is that it's an unknown. If someone were to tell me that what I'm going through is normal and expected, it would be a relief.

  4. Heyygirl

    Heyygirl New Member

    Hope you slept well again last night. It is amazing when it happens, isn't it?

    I checked out your Virastop product online. Interesting! Yes, the soluble fibrin monomer, if I understand it correctly is due to a coagulation defect some of us seem to have and a fibrin coating is laid down in the blood vessels and capilaries. When I started taking a product called "coag clear" after about 3 days I had my first identifyable Herxheimer effect. Whew. What an experience. Anyway, even though you probably know all of this, and may have already seen this, I will leave a website for you to watch a video on if you like. Dr. Holtorf is giving a presentation on issues you talk about. Scroll down to the "Potential Unique etiologies..." and click on the "download" link. It doesn't actually download the lecture rather opens it up for you to watch. He takes awhile to get to the point as he gives some background first, so you need about 30 minutes to watch it. Again, it is probably already stuff you know, but one never knows where one might get a new piece to the puzzle, and I just thought I'd offer it.

    Have a restful day.

  5. Forebearance

    Forebearance Member

    Hi Cheryl,

    I did sleep well last night! Thanks for asking.

    Oh, those Herxheimer effects are no fun. You have my sympathy!

    Aw, thank you for the link. I'm not familiar with Dr. Holtorf, although I know people on this board have talked about him before. I'll check it out.

  6. Forebearance

    Forebearance Member

    Well, it seems like I just go from one strange new experience to another.

    I finally got better from the effects of my seaweed bath. Whew. Then a few days ago I put a bunch of colloidal silver on a sore tooth I had. I was afraid it might be getting infected, and I wanted to nip it in the bud.

    I had never used so much colloidal silver before. (It's an anti-microbial.) It turned out it wasn't an infected tooth, it was something living in the sinus below the tooth. And I made it mad! Ack!

    So I started a war and now I feel like I have to keep fighting until I win. I keep taking more colloidal silver, and the pain keeps moving around all over my sinuses and even around my body. I don't know what all I might have living in me, but it's time for this critter to go.

    And today I've been having cognitive symptoms! Ack! Could it be Lyme that I'm fighting???

    I tried Saventero (a brand of cat's claw) back when I lived in my moldy apartment, just in case I might have Lyme bacteria. I could barely tolerate any of it. It made me so sick.

    And I heard from Lisa that she was much better able to tolerate doxycyline after she got away from her moldy house. So maybe now I will be able to tolerate some kind of antibiotic better.

    So now I"m detoxing mold poison, taking Virastop to fight viruses, and taking colloidal silver as an antibiotic. I did not intend to be fighting on three fronts at once, but it kind of happened.

    I'll go very slowly with the colloidal silver and take just enough to keep the war going on. I don't want to have a big Herx.

    Oh yeah, and I'm methylating better, so who knows what THAT is detoxing out. Geez!!! Luckily the methylation supplements don't seem to cause me stress.

    What a long strange trip this is. But somehow the colloidal silver feels like it's good for me. I have a feeling this fight will be worth it.

  7. redhummingbird

    redhummingbird New Member

    Hi Forebearance!

    Colloidal Silver can pack a punch. It hits lots of bugs including lyme. I took it along with antibiotics when I was treating lyme.

    It's good you're going slow with it. Sounds like it might be time to get tested for lyme.

    I found drinking water with fresh squeezed lemons and a little bit of stevia helped with the herx.

    Long, strange trip indeed!

    I have no doubt you'll win the fight.
  8. Forebearance

    Forebearance Member

    Hi you guys!

    Thanks for your note, redhummingbird! I did get a good Lyme test in November (my third one) and I am still waiting for the results. The doctor is slowing things up.

    I drink lemon water too! I don't put stevia in it, but I love it also. Meyer lemons are in season now and I adore them for using in lemon water.

    I just got done reading your thread, Kelly. I forgot to say that I am intrigued by the Liv52. I have never heard of it. And it's made of stuff that I didn't know helped the liver! Now you've got me wanting to try it. I think my liver is a weak spot of mine, too.

    Yes, I get cytokine reactions to Virastop sometimes. Especially when I first started it, but also if I forget to take it for a while and then re-start. But the re-start reactions are more like having a mild cold. They're not so bad.

    I love Throat Coat tea, which has slippery elm in it. I drink it even when I don't have a sore throat. That is, when I'm not drinking lemon water. lol

    You know, I had just purchased some Epsom Salts and some Castor Oil before I decided to dismantle my apartment. So I never got to try them. But I really wanted to try the epsom salts bath and the castor oil pack on the liver. Hopefully I can do them soon. The bath with epsom salts sounds gentler than the seaweed bath I did.

    I'm really glad to hear that the Epsom Salts bath you took relieved your cytokine symptoms.

    That is so cool about your friend and the Rescue Remedy. You just reminded me that I was taking it to help me sleep when I was staying in hotels this summer. I should get mine out again. It was really useful in a time of stress.

    It wasn't an easy task for me to find a new place to live. I stayed in a lot of hotels this summer while I was apartment hunting. I went over to look at another town with the idea I might like to move there, then I realized I was too sick to do something like that. So I came back and hunted around here some more. Yes, I'm back in Nebraska.

    I wish I had known that Hampton Inns are relatively mold-free. It would have saved me a lot of grief. Lisa tipped me off about them.

    First I rented an apartment that ended up making me sick after one week. I managed to get out of the lease, with a lot of unpleasantness. Then I decided to look for something that was located on a hill, with good water drainage away from the building, and on the west edge of town so the air would be fresher. I finally found a place that is WAY over my budget, but so far it has been safe for me. I am SO relieved to have a roof over my head.

    My credit card will just have to suffer for a year while I stay here and get better. It got to the point where I wasn't picky about the cost. I am considering it to be part of my treatment expenses.

    So I think there was a certain amount of luck involved in my finding a new place. I could do all the prudent things like look inside the bathroom and kitchen sink cabinets for signs of water leaks, sniff the air in the place, and look at the baseboards for signs of past flooding. But really, if the problem was a small one, it could take me days to feel it.

    It is probably wiser to find somewhere that has a month-by-month lease option, or a roommate situation, or something where you can change your mind more easily.

    Yes, as I understand it, colloidal silver is supposed to work on viruses, fungi and bacteria. So it could be battling anything! I'm sure it does get absorbed well when sprayed in the mouth like I've been doing. I hope my tooth is okay, too. I'm really sensitive to my calcium levels. If they get low, I get cavities very easily.

    The cholestyramine really seems to suck out calcium, so I have to take as much calcium as humanly possible. And take breaks from the csm. And take it very slowly.

    It's true that I rely a lot on being able to communicate with my body. As you say, it's hard to tell what is going on sometimes. Detoxing can feel just like toxing.

    Thanks for saying those nice things. I chose my screen name on purpose, thinking about how hard the CFS journey is! :) Maybe I was hoping to give myself extra power!

  9. Heyygirl

    Heyygirl New Member

    are an inspiration to many of us. Here's hoping this phase passes soon.

  10. Forebearance

    Forebearance Member

    Thank you so much Cheryl!

    I hope you are dong all right these days.

  11. Heyygirl

    Heyygirl New Member

    Well, I am about to join you in the detox game. I will be having my silver/mercury amalgams removed in March and will be doing the heavy metal detox for the next years. This should be interesting. I am so tired of lights being too bright, sounds being too loud, normal smells driving me crazy, and hopefully a few months down the road this will subside somewhat. The dentist I selected does use the proper procedures and has the equipment to keep me from being further infused by the mercury he will be digging up.

    Gotta hit this on all fronts!!!! You are an inspiration!!!

  12. AuntTammie

    AuntTammie New Member

    I just wanted to let you know that I can relate to so much of what you post. I'm sorry that you are dealing with so much, but it helps me to know that there are others out there who totally get it...and your posts have that effect on me. I definitely get the chemical sensitivity thing, and I joke that I have super power senses! I mean seriously all my senses seem so strong and sensitive to everything, esp smell and touch...I try to take a step back from myself and see it as amusing and interesting, but that only works when I am having a fairly good day.

    As to the silver, I started taking it recently, bc I had a chance to fly to visit family and I was worried that I would catch something on the plane. I normally react to everything I try (supplements, meds, etc), but I didn't have that experience with the silver. I just started feeling a tiny bit better overall and I did not get sick on the trip. I started out taking it 7 times a day (the amount recommended on the bottle for short term immune boosting), and had no problems with herxing or anything else. Obviously we are all different, so you still might want to start slow, but I thought I'd share my experiences with it.
  13. Forebearance

    Forebearance Member

    Oh boy, Cheryl, I hope your heavy metal detox will go well! I hope you will feel a lot better after you get those fillings out. Will you let me know how the detoxing goes for you?

    Aunt Tammie, I'm so glad you can relate to my posts. Detoxing has been really strange, for sure. Oh, that is good news that the silver made you feel better instead of giving you some kind of Herx. Maybe you don't have any smoldering infections to get rid of.

    I find that the colloidal silver is one kind of antibiotic that I can handle. The prescription antibiotics make me so sick to my stomach. Maybe it's because they're made from mold! Thank you for sharing your experiences.

    Yeah, I know what you mean about catching things on airplanes.

  14. Forebearance

    Forebearance Member

    Hi Kelly,

    Well, in the long term, I can tell I'm methylating better because I get thinner and I sleep better. But in the short term, I rely on excretion to tell me how I'm doing. If I'm having at least 3 bowel movements a day, I know things are going along well. Detoxing makes me tired, too, but in a good way. It also makes my sweat a lot more strong smelling. Lovely.

    I don't know if that info will help you at all. Sorry! I know that some people have taken one of Dr. Yasko's recommended blood tests to see if they need more B12 than most people. I can't remember the name of the test. It's some SNP, of course.

    Lately I have been trying some Resveratrol. I heard about it on "60 Minutes". I feel like the csm I take sucks the life out of me just a little bit, because it feels like it sucks out tiny amounts of all my hormones. So I thought maybe the Resveratrol would put a little life back into me.

    So far it seems to be doing that. My thyroid seems happier! So I am very encouraged. If I can find something to make taking the csm easier, I am all for it.

  15. Forebearance

    Forebearance Member

    Well, this morning I didn't take any colloidal silver, because I was just bored with taking it. I thought maybe I'd take a break from it.

    Then I went out to do some errands. Well, my brain became impaired. I could barely focus enough to remember what I wanted to buy or to remember how to drive. That was scary. Of course I took some as soon as I got home, and I'm getting back to normal now.

    So I guess I can't stop it. At least not now.
  16. kd25

    kd25 New Member

    I feel like csm sucks life out of me too. I would like to try Resveratrol. How much is the rcommended dose?
  17. Forebearance

    Forebearance Member

    Hi kd25,

    I haven't researched resveratrol yet. So far, I just bought a bottle that says it contains 40 mg tablets, and I've been taking one a day. I've been putting off my research because it seems so harmless. But I'll get on it soon.

    Will you let me know if you find out anything about the recommended dose?
    Thank you!

    Hi Kelly,

    The odd thing is that I have never felt that spacey before. So yes, I think that something might be coming out of my brain. Or else there is a battle going on in there. I wasn't feeling anything going on from taking the colloidal silver for a few days, so I thought it might be done. But I was sure wrong!

    Also, the silver was making my tongue numb. Maybe I could figure out a different way to take it.

    Ooo, I haven't heard of longevatrol. Is that a brand name of a supplement? I've been taking grape seed extract for a couple years and the resveratrol seems to be different. It seems more powerful. I wonder if I could stop the gse now.

    I hope the new methylation supplements have a good effect on you!

    Oh, you had that flu too! I'm not sure, but I might have had it. It was very subtle, if I had it.

    I hope the lumbro helps you.

    Yeah, I think I'll stay home until I feel better. It was too strange to be trying to remember to stay in the lane lines on the road and to stop when I approached other cars. It was like I was unable to concentrate on anything. I wonder what is going on in my brain.

  18. Forebearance

    Forebearance Member

    Thank you Kelly.

    My sinuses are going crazy again today. Who knows, it could just be regular old candida that is causing the battle. I usually keep it down to a dull roar with Candidase, but maybe the colloidal silver is trying to polish it off.

    I'm glad to know that you've had some brain detox experiences and survived them. Yes, yesterday it felt exactly like learning to drive, having to remind myself of all the basics. I could vaguely remember how to do those things, but what bothered me was that I couldn't seem to get myself to care about remembering them. My brain was more interested in spacing out. Yikes.

  19. Forebearance

    Forebearance Member

    Well, it's a new month, so it's time for a new journal thread.
    I'll call the next one "CFS: Forebearance's thread 27".
  20. Heyygirl

    Heyygirl New Member

    I hope that those using this remember to do it on a totally empty stomach...otherwise those little enzymes will get used us digesting food rather that the soluble fibrin monomer lining the blood capillaries. That would be a huge waste of money!!!!!!! And don't eat for at least 1 hour!!!!!