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Intranasal Antifungal Therapy in Patients with Chronic Illness Associated with Mold and Mycotoxins:

Discussion in 'Latest ME/CFS Research' started by Ifish, Apr 24, 2015.

  1. Ifish

    Ifish Senior Member

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    Intranasal Antifungal Therapy in Patients with Chronic Illness Associated with Mold and Mycotoxins: An Observational AnalysisJoseph Brewer, Dennis Hooper, Shalini Muralidhar
    GJMR (2015) Volume 15 Issue 2: 29-33.
    Category: NLMC Code: QV 252 · Added: Apr 24, 2015 · Rating: οο
    · Link

    Exposure to mycotoxin producing mold and mycotoxins can be associated with numerous adverse health consequences. We previously reported that patients with chronic illness frequently had a history of prior exposure to water damaged buildings (WDB) and mold. Additionally, the vast majority of these patients had mycotoxins present in the urine. We have postulated that the mycotoxin producing molds were likely harbored internally in the sinuses of these patients. In the present analysis, patients with chronic illness and a positive urine mycotoxin assay were treated with intranasal antifungal therapy, either amphotericin B (AMB) or itraconazole (ITR). AMB was associated with local (nasal) irritation adverse effects (AE) in 34% of the cases, which resulted in discontinuation. In patients that remained on therapy without AE, we found that 94% improved clinically. Additionally, we found that the urine mycotoxin levels decreased substantially in patients that improved on therapy. Similar findings were seen with ITR, however the number of patients treated was much smaller.
    Keywords: toxic mold, mycotoxin, chronic fatigue syndrome, intranasal antifungal therapy

    Note from Ifish: All patient participants have been diagnosed with CFS. There has been extensive discussion concerning the role of mold and mycotoxins in CFS in the following thread: http://forums.phoenixrising.me/index.php?threads/detection-of-mycotoxins-in-patients-with-cfs.22743/
     
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  2. cigana

    cigana Senior Member

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    I may not have read the paper in enough depth, but I didn't understand what method they used to score/rate the self-reported improvements.
     
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  3. justy

    justy Donate Advocate Demonstrate

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    This is exactly what KDM told me in March - that mold lives in the sinuses. I just completed 25 days of amphoceterin B intranasal twice daily with no problems. I did think at first that I might have felt a tiny bit better after this treatment - my sinuses certainly feel clearer - other than that I don't know - my mold panel (serum) just came back negative, so maybe mold wasn't a problem for me anyway, and yet im sure we didn't test for every possible strain and didn't do the urine test they talk about here.
     
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  4. cigana

    cigana Senior Member

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    Did KDM mention what made him think you should be treated for mold? (i.e. was it a specific symptom he looks for?)
     
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  5. justy

    justy Donate Advocate Demonstrate

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    I have not been able to tolerate antibiotics for Lyme and co, so KDM is looking to see whay I would react so poorly plus what he can do to get me on the road to recovery. I guess he thought of mold next as I had reported living in a very moldy house over 20 years ago when I first became ill. He had me take the online vcs test which was positive for mold (quite badly). So started me on the Amphoceterin B to see how I got on - luckily I didn't react to it and was fine over the 25 days - in fact everyone in my house had a cold and mine didn't make me bunged up at all, it was great.

    In the meantime he ordered a mold panel from Redlabs which was all negative - but im not sure it covered all types of mold - I see him in June so will find out what he says about the negative result then v the online VCS test.
    I have felt slightly better since the nasal irrigation.
     
  6. cigana

    cigana Senior Member

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    Great that you are feeling slightly better. I wonder if KDM would consider giving you a second dose, or continuing treatment along these lines...
     
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  7. justy

    justy Donate Advocate Demonstrate

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    I think I will ask him about it in June.
     
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  8. free at last

    free at last Senior Member

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    I personally think mold just adds to the problems, so is worth minimizing. But I don't see it as a cause, or sustaining the illness. If it was as simple as that. there would be a lot more people cured by now.
    But anything that aggravates the condition, is worth helping.
     
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  9. Ifish

    Ifish Senior Member

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    I'm a 23 year veteran of CFS and disabled with the condition since 1998. Skepticism is understandable. I have followed different lines of thinking and treatment many times over the years, and I know how hard it is to shift gears. I'd just like to suggest it is worth a closer look. One thing I am sure of is that to be effective one has to stay with it a very long time. What followed is my one year posting on the previously referenced thread:


    ONE YEAR

    We have almost hit the one year mark on Brewer's protocol. Here is my one year report.

    To give a little background, I have been married for 28 years and I have two daughters age 19 and 22. My wife and I moved into our home in 1991. My oldest was born in 1992 and my youngest in 1995. We all have significant CFS/ME health histories and clearly meet the CDC definition for CFS.

    I became ill 4 months after moving into our home, but was not diagnosed with CFS until 1997. I went on disability in 1998 but I should have done it years earlier.

    My wife became ill in 1995 and was diagnosed with CFS a few years later.

    My two daughters both have had health issues since early childhood. My oldest clearly had CFS by the time she was in 8th grade.

    My youngest battled chronic ear and sinus infections for nearly her whole life. She crashed completely over seven years ago when she was in sixth grade. With the exception of a five week part-time stint in 2010 she has never made it back to school. In fact, it has been 4 1/2 years since she has even been able to tutor at home.

    The impact of Brewer's treatment has been great, but it is slow.

    A year ago, my youngest daughter was almost homebound. She felt terrible all of the time and suffered from numerous neurological issues, including sensitivity to motion, sound and light. She also had significant issues with her gut and bladder. It was very, very difficult for her to leave the house, and she did so only after taking medications for anxiety and nausea and planning stops along the way. Daylight prevented her from sitting in the front seat of the car.. A 30 minute ride with one or two stops was the absolute maximum she could endure.

    Her improvement has been very uneven and very gradual.

    After five month on the treatment she was well enough to get her permit to start to learn to drive. At approximately the same time she was able to start therapy to address her severe anxiety.

    At the 11 month mark she passed her driving test. Since then she has continued to move forward and now drives herself most places she needs to go. She leaves the house almost every day, most often on her own. She can go to appointments, stores, run errands and the like. She regularly drives herself to her therapist and doctors' offices.

    She has improved in many other ways. She has dramatically reduced her medications. A year ago she lived a very isolated life. She had little ability to deal with the outside world. Now she speaks with people regularly, conducts her own transactions and is a regular functioning person.

    Her cognitive function has improved and her anxiety is slowly getting better.

    What holds her back the most still is fatigue, brain fog and anxiety. The windows of time she can get out and do things is still pretty small.

    Now that she has improved physically, her mental outlook has also improved. She believes she can continue to get better. She is hoping to start work on her GED in the fall and has aspirations to eventually get her college degree.

    The illness has been different for my oldest daughter. She was a very bouncy, energetic and happy child, but over the years the illness took hold of her and she lost her energy and bounce. Her main symptom is that she feels crummy all the time. It is like a case of the crud in wintertime that never goes away. She has been good enough to function close to normal, but never truly felt well. She never had to drop out of school and in fact obtained her college degree on time, but she hasn't been right for years.

    Because of school she didn't start the protocol until last June. Although the rest of us showed small signs of improvement at around 2 to 3 months, my oldest went month after month without any signs of improvement at all.

    My oldest is now in graduate school. After about 8 months on the protocol I was talking to her on the phone and I knew that she had turned the corner. I could hear it in her voice. She is becoming the person she used to be many years ago. My wife, youngest daughter and I can clearly see how much better she is every time we talk to her.

    My wife and I are better as well. My wife has a very demanding job which I think makes improvement difficult but she is clearly feeling better. She often comments on how much improved she is mentally and now wonders how she survived her job in previous years.

    As for me, I am a totally different person than I was a year ago. I have more energy. I think more clearly. I am much more stable. I feel a ton better. I am taking on projects I have wanted to do for years. Everything is significantly better.

    I would describe this year as one big turn around. But it is also important to remember that we have not completely recovered. I would say my youngest is 1/3 of the way back. A year ago I was terrified that any further deterioration would mean that I wouldn't be able to care for her. I believe this is now in the past

    There are a few other things I feel are noteworthy. It has been a learning process and I think we could possibly be further along if we knew then what we know now. Doing the right amount of treatment is a balancing act. Either using the wrong anti fungal or treating too often can cause a lack of progress. Inflammation in our sinuses due to the treatment caused my youngest and I to have a severe bacterial infections for at least 6 months. It is still hard to keep that under control. We are now better at balancing the treatment so we are doing enough to improve but not overdoing it to avoid other issues.

    Overall, my family has reduced our reliance on fringe or alternative treatments for CFS. We are using fewer and fewer supplements. We now have the energy to refocus on more traditional medical therapies to enhance the recovery process.

    We have also been using the sauna more and more and it seems to be a very important part of the process. In prior years the sauna would make my youngest and I feel worse so we didn't stay with it . Now it improves our energy levels and decreases body aches. On a bad day some time in the sauna can really turn things around

    I have tried to just stick to the facts as best as I can, and neither understate nor overstate how we are doing. So far the treatment has impacted me and my family tremendously. I am getting back the wife and daughters I used to know. Hopefully things will continue in this direction. Time will tell.
    Ifish, Mar 21, 2015 Report
     
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  10. cigana

    cigana Senior Member

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    Hi free. When I went to a place that was mold-free for 1 week, I had a HUGE recovery. Almost feeling cured. I can't be sure it's mold, but "something" in the environment is obviously making me ill, and I think the number one suspect has to be mold.

    Also, it is not simple to eradicate mold from your body nor to find a place free of mold, so that is why we don't see many people being cured I think. But if you read around, I think mold-avoidance has so far the best outcome as a treatment for CFS (with maybe the exception now of Rituximab). I am talking about classic Canadian MECFS (not some wheat allergy or something). There are not many people on this forum, but if you read some of the older posts and the HealClick forum, you'll find people who have had huge improvements. Also there are a few blogs around (don't know how to find them now), like that guy who was writing a diary of his Ampligen treatment...he started mold avoidance before his treatment so as to increase his chances of getting good results, in the end he didn't need to take the Ampligen!

    Also remember, the treatment Brewer is using is quite unique, combining a specific anti-fungal with a chelator, over a long period of time, and using a quite unusual device, so I don't think there are many people around the world randomly taking this combination of treatments.
     
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  11. free at last

    free at last Senior Member

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    Hi Cigana

    I have no doubt avoiding things that can worsen a condition will bring about improvement. Sometimes dramatic ones, especially if the problem is severe. As mold could be in different circumstances. places of habitat.

    Healthy people likely do not respond to Mold in the same way as ill people do. They likely will tolerate it much more readily.

    That easily explains the dramatic improvements you mention.

    It by no means, proves it is the cause, or sustainer of the condition. Just a aggravation from mild to sever. Depending on a persons circumstance.

    But knowing how my illness started, with very high temperatures, more reminiscent of Flu type illness.
    I could only ever see Mold as one of many aggravating problems on top of another condition already present.

    It could well be the more sever of the aggravating problems, one has to deal with, once the immune system has been under attack and or damaged.

    Of which there are many. Candida. Further viral and or bacterial infections.

    lack of sleep, anxiety, the list is endless.
    But I agree for some people under some circumstances. Mold avoidance may help.
    I do not believe it is the cause, just as candida is not. or allergies for example.
    But who knows maybe there is subsets. where Mold has a bigger role to play in the development of ME/CFS Seid sounds weird to me
     
  12. cigana

    cigana Senior Member

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    Mycotoxins strongly affect the immune system, so mold could be the reason you had a bad reaction to an otherwise normal flu. I think this explains why ME SEID sometimes occurs in outbreaks (e.g. in schools or other buildings) localised to a particular building rather than set of people.

    Mold species evolve very rapidly, so I think it is fair to say we don't know what species are present in typical modern living environments. Nor do we know how different mycotoxins act synergistically. There is just not enough research being done.

    I'm not saying mold is the cause, but I think the jury is still out. Perhaps this is why no research to date has found the cause...we've been looking in the wrong place...
     
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  13. free at last

    free at last Senior Member

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    Hi Again Cigana, I have reason to believe, the initial attacks, were not a normal flu. I had so many episodes, that no one in my family ever caught. This seems extremely unlikely to me. I feel sure it is likely if the initial attacks were some kind of normal Flu, some one in my family, especially my partner would have caught it. I never took any precautions to prevent this, Which in hindsight I likely should have. But of course not knowing the initial cause, doesn't really rule out your theory, And I agree it could be correct. But I believe even if it that is true, there are so many other factors at play. Confusing the issues.

    And ME Seid is filled with inconsistencies, As outbreaks of the flu type onset have happened in cases. But not mine ? make of that what you will. I also caught this Flu so many times, in the words of a GP I saw at the time

    ......You can not catch Flu that much .......?

    Of course my family possibly being exposed to the same triggers, meaning the flu type onset, and the same mold environment. One does wonder what other factors are at play here, Of which I assume there must be many.
    As they did not develop ME Seid ? which your theory would seem to suggest they would. or could

    My partner would have been the more likely to have done.
    Clearly any theory does not work in all cases This has been the overriding pattern in this illness.
    And explains much talk about subsets.

    I am not trying to disagree. But just pointing out the many inconsistencies. In most theories about this illness.
    I believe the reasons for this can be so complicated its rather difficult to be certain of patterns, one way or another.


    I also believe regardless of concensus or who a diagnosis came from. in my case two psychiatrists and a consultant at hospital.
    I do not believe we are all suffering from the same illness. I have never believed this.
    It is of course possible many different triggers can all lead to the same type of symptoms. And end up with the same diagnosis. When infact the conditions might appear the same or very similar but are infact not.

    Some types of poisoning for example can mimic Flu type illness fevers the lot.
    I believe there are subsets on this forum. There is no unified theory. Which bothers me a lot, As I want there to be

    Any theory can be made to work for some people in some circumstances. Leading to much confusion. And can anyone tell me much confusion has not been the over riding observation of this illness. This has to be taken into account. and can not be dusted under the carpet.
    Regardless I do believe people can improve, on mold avoidance treatments. sometimes dramatically. We do agree there Cigana.

    As per my whole conversation what this means I am unsure about ?
     
    Last edited: May 10, 2015
  14. cigana

    cigana Senior Member

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    It is known that certain toxic molds in living environments can have drastically different effects on the members of a family within that environment. Sometimes, for example, it is observed that some members of the family will become very ill while others will not be ill at all. Some will have headaches and nausea, some will have joint pain without headaches or nausea. etc. Why this is so, we don't know. Obviously genetics can play a role.
    So not everyone within a household will become ill in the same way.

    Anyway, I do not doubt, as you say, I think there are many subsets in this disease, and mold would not turn out to be important for everyone. And, like you say, any theory can be made to appear to fit and work. I suppose that in my case, after trying so many things with zero results, something this simple could produce miraculous results, it is hard for me to ignore the obvious central role this thing in the environment is playing. Imagine, you go to live in a new environment for 1 week, and your PEM, that you've had for years, simply rapidly disappears! You can walk for hours and no side effects! You can get up the next day and walk for hours again!

    It's just a shame, that it is not taken so seriously as the more "traditional" biological causes, because I think it could help many.
     
  15. redaxe

    redaxe Senior Member

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    I think that is the most plausible explanation for mold sensitivity. I too also experienced what seemed to be a freak recovery after camping out in a semi-arid area for a couple weeks and had a sudden relapse when I went back to living in my normal environment.
    Which to me doesn't really fit with the sinus mold colonization theory. Camping in the desert isn't going to suddenly remove a mold colonization of the sinuses nor is it suddenly going to reduce your mycotoxin levels. The only plausible theory I think is that your stressed immune system is reacting abnormally to the environment. This could be some form of autoinflammatory response or mast cell activation disorder.

    I got caught up in the whole mold hysteria and I thoroughly regret spending $1000s on mycotoxin tests and alternative physicians that charged me an arm and a leg on expensive appointments and then on a regime of antifungal drugs, liposomal glutathione, cholestyramine etc. In the end it did nothing for me so in desperation I travelled to the USA to consult a proper CFS physician who diagnosed me with persistent HHV6. This makes a lot more sense as my illness started from a viral like episode.

    Turns out that I did have ongoing problems with sinusitis but I made a lot more progress by seeing an ENT who did swabs and CT scan of my sinuses. No evidence turned up of a mold infection but they did find evidence of mucosal thickening and an overgrowth of Staph aureus. I tried a few courses of antibiotics which helped quite a bit but I also got a lot more progress by washing my sinuses out with saline from a neti pot and then inoculating them with kefir yogurt which I had home fermented with extra probiotic strains. This has helped a bit and I probably should continue trying it more frequently. There was an article about sinus microbial diversity so hopefully there will be more research on what microbial species are beneficial to the sinuses.
    https://www.ucsf.edu/news/2012/09/12718/sinusitis-linked-microbial-diversity
     
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  16. psz

    psz

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    It may in fact fit with fungal colonisation. Molds produce mycotoxins as a survival mechanism in response to external stimuli. These stimuli can be for instance other molds or bacteria competing for the same environmental niche.

    If there are no such stimuli from the environment, then mycotoxin production may be significantly reduced or even stopped altogether which may explain why extreme mold avoidance works for so many people, yet once they are back to civilisation, there is a sudden relapse.
     
  17. Gingergrrl

    Gingergrrl Senior Member

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    Agreed.
     
  18. cigana

    cigana Senior Member

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    That is a very good point...
     

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