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Detection of Mycotoxins in Patients with CFS

Discussion in 'Latest ME/CFS Research' started by slayadragon, Apr 11, 2013.

  1. Valentijn

    Valentijn Activity Level: 3

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    8) NAC helps some of us sleep pretty normally. Probably by combining with glutamate in the process of producing glutathione, and lowing glutamate levels in the process.
     
  2. detts

    detts

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    I have had low grade fevers the last few days and clamminess- and have felt quite awful. I seem to get a bit better by the evening but the mornings are really tough. My nose has been very congested and still bleeds a bit but not as much as before. I alternate between being incredibly snotty and have gone through boxes of tissues and then terribly congested where my nose can't even breathe.. I am on day 10. My throat is not as sore as before. I have also been tearful which of course makes the congestion worse! I have started Azelastine spray to try and calm the nose down as I feel like I have really bad hay fever. Hope that is going to be ok with the protocols. I started doing neti pot rinse and loads of mucus and blood clots come out. I am sticking it out though.
     
    Last edited: Aug 2, 2014
    Forebearance likes this.
  3. Skiii

    Skiii

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    Do you eventually get used to the amphoB?? This burning is awful! My sinuses, radiating down into my teeth, and then I'm all stuffy from blowing my nose.

    Also, I have had no discharge after doing the chelating px/amphoB. Isn't it supposed to be a good sign if you do, like you are getting rid of biofilm? Ifish or anyone else, do some people on Dr. Brewer's protocol not have mucous?

    Sorry for the questions. My doctor is leaving his practice for a Lyme clinic in CA. I'll have to move to the care of another colleague of his, but there's quite a wait.
     
  4. detts

    detts

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    The burning is not as bad as the burning I get from the BEG spray. I feel the ampho B burn shooting up to my sinus and then front of brain.... I think it is easier to take now than when I first started - I get a ton of mucous after although it could just be the medicine I suppose coming out - they look similar!
     
  5. m1she11e

    m1she11e Senior Member

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    I don't find the Ampho B to burn nearly as bad any more. I don't get the crazy running nose all day. I do get a really bad headache but it is less too. I get very very tired from it. No bleeding at all. I was gonna go to every other day but I chickened out. Im still at every 3rd day.

    It seems to be that the chelating PX is a finer mist or there is less of it or something. It is just way easier to do. The Ampho B seems to take forever to dispense. At first I just felt like I turned right around and blew it all out of my nose. Now I use my own method that I learned from someone who used to use the Neti pot a lot. I dispense Ampho B in both nostrils (not all of it, just to the point where you feel its gonna drip back out or you are gonna have to blow.) then I turn my head upside down while standing. Im trying to get it to run up into those sinus cavities up by your eyes. If I stay upside down and resist the urge to blow it will usually stay put. I keep doing this til I dispense it all. I do everything I can not to blow my nose for at least 10 more minutes. If I don't do this I feel like most of it comes right back out. ????

    I will say I am not sure why it really doesn't burn much anymore. The headache I got at first was all into my teeth like you described. It was horrible all night and into the next day. It is way better now.

    Worst symptom is just the dead tired I feel after I do it. Every third day is much more tolerable though.

    Sorry about all the nose blowing talk!!!:oops:
     
  6. Skiii

    Skiii

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    Thanks m1she11e.

    I'm going on a full blown 24 hour sinus attack since doing it last night. Haven't been able to breathe through my nose, or sleep, or function. I'm beyond miserable. Not sure I'll be able to proceed with the protocol...
     
  7. m1she11e

    m1she11e Senior Member

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    I don't know if that would mean it is working better for you than it is for me?? Is that a good sign? I have had NOTHING that bad as far as sinus symptoms.

    I also wonder if maybe it would help to take an antihistamine while doing the protocol. I started doing that and I think it is one of the things that helped.
     
  8. Skiii

    Skiii

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    My sinuses act up like this occasionally with allergies. It's like they get irritated and then get super irritated, leading to usually 8-12 hours of complete congestion. I think the amphoB just irritated it and the more I blew my nose the more it acted up. What's strange is that it's 24 hours later and hasn't subsided. I don't think it has much to do with it 'working', I think it's just my crazy sinuses. I am on TONS of allergy meds, anything I can do to try and relieve it! The thing is I can't just clock out for a whole day like this when I've got two young kids.

    Thank you for the support though- it's nice to have others at least know what I'm going through.
     
  9. Ifish

    Ifish Senior Member

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    Skii,

    My experience and that of my family members is similar to m1she11e. It does get better after a while. Now, my symptoms with the AmphoB are pretty minimal. If it is just too intolerable the alternative is Nystantin. The thing about Nystantin is that it is a lot of volume. It takes about 30 minutes. The other downside is Nystantin does not have as much of a track record. It is not as proven as Ampho B. I'll be seeing Brewer toward the end of August, so perhaps I'll learn more then.

    The volume of Chelating Px is not very much so I have never had a lot of mucus and medicine come out as compared to the Ampho B.
     
  10. detts

    detts

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    I have the same issue- I have been doing steam inhalations to help unblock. I had to resort to taking a sudafed and using a decongestant as I couldn't breathe and like you say it makes a person so miserable to be like that. My sleep has been really compromised because it's hard to lie down when you can't breathe. It was totally blocked this morning but after the steam inhalation with a few drops of thyme one nostril is unblocked.
     
    Skiii likes this.
  11. Ifish

    Ifish Senior Member

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    It has now been four months on the protocol for me, my younger daughter and my wife. My older daughter has now been on the protocol for over two months.

    I have stated before that I am better, but I've never gone into a lot of detail. I feel it might be helpful to others if I did so at this time. It is important to understand I'm not new to this. I've been sick for 23 years. For the first seven years I had no diagnosis of any kind. Since then I have mostly operated under a Chronic Fatigue Syndrome diagnosis, but I have also been diagnosed with Lyme Disease and coinfections. I feel certain the Lyme diagnosis is wrong.

    I can think of at least 14 different medical practitioners I have worked with during the course of my illness. I've made major commitments in time and money to many of them. I have conferred with many other medical providers that could offer no help. I've treated in five different states. I have read that long term sufferers of CFS do not experience a placebo effect. That is certainly true in my case. I have done treatments that helped me, but these improvements have been minimal and ended up being temporary.

    There has not been any time during the last twenty years I have not been on one treatment or another. I have done endless antibiotics, including a five year stint I was on them every day. I did three months on daily IV antibiotics for lyme disease. On another occasion I did six months (seven days a week) of twice daily high dose IV antibiotics for lyme and coinfections. I've done many CFS related protocols, including protocols for mitochondria dysfunction, immune boosters, detoxification regimens, IV and oral chelation therapies, acupuncture, oral antivirals, IV antivirals, a number of other IV therapies with several providers including IV vitamin C, Meyers cocktails, detox IVs, etc. In the last few years I've gone through two different protocols for mold detoxification and treatment. I've tried a plethora of alternative remedies, some of which are just a little alternative, and some of which are way, way out in left field. As the years have marched on and other family members have become ill, they have done many of these treatments as well, all to no avail.

    Through all this, in all of these years, none of these treatments worked for me, but the mold colonization treatment developed by Dr. Brewer is working very well. I take no binders and do not practice extreme mold avoidance, yet I continue to get better.

    I was working at the time I became sick in 1991. I was able to work until 1998, but I should have quit several years earlier. My biggest issues have been extreme fatigue and malaise. I simply felt very sick all of the time. I have had a lot of issues such as peripheral neuropathy, chronic sinusitis (4 surgeries and never ending antibiotics), sleep disturbances, mental fog, headaches and body pain. I would gladly put up with these other issues if I didn't have so much fatigue and malaise.

    At the time I started the protocol I was about a 3 on a scale of one to ten, with one being bed bound, two being able to be out of bed with very limited activity, and so on. In the last six year or so, I'd say I spent quite a bit of time being a 2 but I had improved up to a 3. This is pretty much the same range I have been in for about 15 years.

    The protocol set me back significantly for about seven weeks, then suddenly I was able to start exercising. By this I mean walking for 30 minutes at a fairly slow pace. I have been able to exercise the great majority of days since then. In the prior year I was never able to exercise at all. Not a single time. In the two years or so before that I probably only able to exercise one time per month or less. .

    I have slowly gained ground these last couple of months. I added the mupirocin about 4 weeks ago, which initially set me back but has now seemed to give me an additional boost.

    I am now consistently around a 6.5 on a scale of one to ten. I am very productive and active every day. My daily ability to get things done is probably 3 or 4 times what it was previously. I have reduced the time I spend watching TV by about 70%.

    My energy is up. My brain fog has diminished. I read more and comprehend better. I have less pain. My malaise is greatly improved . My over all quality of life has improved immensely.

    I'm now able to go out and do things I wasn't able to do before. Earlier in my treatment I did things while really wishing I could feel better doing it, but now I am able to enjoy it much more. The best part of this is I can now plan to do something knowing I can and will do it. I no longer have to worry that when the time comes, I will have to cancel. This does not mean I can do everything I want to do. I still have limitations.

    I had my first real check up in many years. I have lost weight. My blood pressure has dropped 15 points. My bad cholesterol has gone down. My good cholesterol has gone up. My labs were all good.

    If I never got better than I am right now I would consider my treatment to be highly successful, even life changing. Of course, there are no guarantees about what the future will hold. I will just have to see.

    I don't have as much feedback with regard to the other three family members. My wife, who has been working full time does feel better but she has had to pace through the protocol to keep working. What she notices more than anything is a dramatic improvement in her ability to sleep and an improvement in the quality of that sleep. It seems like she is really starting to rest (and improve) for the first time in years.

    I don't ask my daughters how they are doing. They have been asked too many times and at the stage of life they are in, they don't want to talk about it much.

    I do feel it is important that I mention my younger daughter. I had reported a while back that she had reached a milestone and had really turned a corner. I know that many people have been reading this thread and I have wanted to be as objective and accurate as possible. As such, I have tried to not overstate anything. In retrospect it seems she really hadn't improved as much as I thought. Then she went on mupirocin a few weeks ago she really had a major apparent die off reaction. She now seems to be past that.

    I am confident she is now better than when she started, but it is not a profound improvement. She has had some minor symptomatic improvement but her neurological symptoms and fatigue continue to limit her greatly. She does have small windows of feeling better. These windows are pretty spread out, but when she is better it is quite clear because she is doing things that had not been able to do previously. She has been so sick these past six years that she has been very isolated and unable to interact with others around her own age. She has now been able to socialize on her good days, which is a very meaningful step forward. In the big picture, I feel she is just sicker and it will take longer, but she has great promise going forward.
     
    Last edited: Aug 5, 2014
  12. Forebearance

    Forebearance Senior Member

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    I am SO happy for you and your family, Ifish.
     
    soulfeast likes this.
  13. Soundthealarm21

    Soundthealarm21 Senior Member

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    @Ifish

    So great to hear this. I'm happy you are doing well. I myself have seem pretty amazing results just by being out of my toxic house. I've talked to my doctor about Brewer's protocol and he sent me in for a CT of my sinuses. We might go forward with it, but I just don't know yet.

    I, like you, am better able to plan things at the moment and it's a very nice feeling. I take it very easy, but I can arrange things. I've already got my tickets booked for my friend's wedding in November. I'd be worried of having a die off and not being able to go, but i'll cross that road if I come to it.

    Once again, thanks for sharing and answering everyone's questions and keeping us updated on your's and your family's situation.
     
  14. Skiii

    Skiii

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    Ifish, so very happy for you and your family. My mind continues to be blown by Dr. Brewer's findings and how it's helping people.
     
    soulfeast likes this.
  15. Skiii

    Skiii

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    I'm feeling very upset about accepting that I won't be able to continue a protocol that could potentially cure me. I will try and give the amphoB one more shot, though honestly it was beyond what I can handle- my husband actually asked if I needed to go to the ER. I think if I can get a new prescription for Azelastine that may help reduce any swelling before I do the amphoB. Is the Nystantin also atomized, and does it come from ASL? Has Brewer spread the word about the Nystantin... I'm not sure if my doctor knows of it.
     
  16. detts

    detts

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    I gave the edta and ampho B a break yesterday - my mucosa needed a break - it is still blocked up but not as bad. I am going to experiment going down to once every two days to see if I can tolerate it better. Every day is too harsh for me right now.
     
  17. Ifish

    Ifish Senior Member

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    Skiii,
    About 1/3 of Brewer's patients cannot tolerate the Ampho B and he is generally putting these patients on Nystantin. ASL does compound this medication. ASL can give your doctor the information. Brewer does not feel it is quite as good in the lab as AmphoB but he feels the percentage of Nystantin patients with die off symptoms is similar. Nystantin actually has some advantages. One is that it is so well tolerated that it can be dosed more frequently, if necessary. Also, there is zero absorbtion so less concern about it's effect on the system. So don't dispair, there is a viable alternative.
     
  18. Skiii

    Skiii

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    Thank you so much Ifish. I'll give ASL and my doctor a call.

    Also, thank you for sharing your story. I'd actually be curious to hear the stories of others on Brewer's protocol, too!
     
    Soundthealarm21 likes this.
  19. detts

    detts

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    I had a break from the edta and amph b for 3 days - which helped my blocked sinus recover. I took a dose today of edta and within half an hour my face flushed and felt like it was burning and my arms have come out in a blotchy rash. This seems to be an allergic reaction to me..... Has anyone else had this type of reaction before to the edta?
     
    soulfeast likes this.
  20. soulfeast

    soulfeast Senior Member

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    Mast cell reaction... which is an allergic reaction. If you have problems with hyperreactivity, could be due to mast cell activation syndrome (MCAS). If not it sounds like an isolated allergic reaction to EDTA product. Not sure it it has acetic acid in it, which would make sense as a mast cell trigger.
     
    detts likes this.

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