Discussion in 'Latest ME/CFS Research' started by slayadragon, Apr 11, 2013.
Did Brewer recommend the sauna? He didn't mention it to me. When did you last see him?
I don't know how relevant this is because I understand that the natural interventions are just not cutting it. But, I did start a rinse with a nasopure bottle of saline blend, xylitol (2 tsp) and 8 drops of agrumax (citrus seed oils). I felt like I had the flu. Stopped and by next day I was fine. I started before my visit to ENT, maybe close to a week. This became worse after seeing ENT and with continued rinsing. I have a polyp and he did push up against it when scoping, so maybe that stirred something up.. but it did resolve the day after stopping the rinse. Kind of scared me a bit about starting the protocol. Good to hear symptoms resolved fairly quickly. Thanks so much for sharing this information!
No he didn't. I didn't discuss it with him.
You know what, soulfeast? I just tried a Himalayan salt inhaler for two days and had a big reaction to it.
I developed a fever in the evening both nights after using it. The second night I also had major body aches. It was actually pretty scary, because I was reminded of the mono that I had at the beginning of this whole illness. I really don't want to go through THAT again.
So I feel you. If salty air affects me this much, what would Ampho B do??
Isn't it great being a canary?
Soulfeast and Forebearance,
It would seem there might be two reasons for these reactions. The first is that the stuff you are putting up your nose irritates the mold and causes the release of mycotoxins. The second is that the stuff is effective and you are getting a die off reaction. Perhaps too much of one.
We are now at around 3 to 4 weeks into the protocol. I also have a friend that started at around the same time. So I have first hand knowledge of four people. A few things are becoming clearer. It does seem Brewer has it about right with dosage. My friend and daughter have been able to carry on at the standard dose. My wife has had to take a few days off here and there in order to accommodate work. I've had to go to every other day and sometimes every third day.
All four of us have been worse, but things have eased up over time. I had a difficult time for 17 days. Then, suddenly, the 18th and 19th day were better, maybe pretty close to where I was before I started.
My daughter took a couple days off at Easter and the results were encouraging. She had lost her sensitivity to light and her GI issues were much better than prior to the protocol. Her cognitive abilities also seemed better. She then went back on the protocol and symptoms returned, but not quite as bad.
Everything that has happened so far points to a die off while on the protocol which eases up gradually. It also appears that getting the dose right is critical. Too much die off is very difficult to deal with. Of course, one must put up with it to some extent, otherwise no progress will be made.
We all have had a lot of nasal congestion, cough, and sore throat while on the protocol. This seems to be easing also. For quite a while, I had a hacking cough, but this has nearly gone away.
Our family health situation has been a nightmare. Our story would take volumes to tell. We have been through a mind numbing amount of disappointment and despair. As such, we don't allow ourselves to become overly optimistic. However, things have gone well so far.
Thank you so much for the report, Ifish.
I hear you on not letting oneself become overly optimistic.
I'm gradually recovering from the reaction. Last night I still had a slight fever, but it's better today. Knowing myself, I'll probably have to use the Ampo B once a week or something. I think I'll keep on doing the salt inhaler as I can tolerate it until my appointment with my doctor in May.
I hope you start noticing even more improvements in yourself and your family.
Forbearance, that's the pipe? Interesting and interesting analysis by Ifish. Thank you for sharing this.
Ifish, Thank you so much for sharing this information. I am wondering about cost and a few other things. Do you pay 30$ for a twice a day monthly supply? And did Brewer test and treat you for bacterial infection as well? I am hoping that the meds have a shelf life that would support skipping the twice daily dosing and days. When I had Ampho B compounded as a spray, that was only good for 10 days. Thanks so much.
Soulfeast, it was one of these: http://www.squipusa.com/products.php?cat=28
I pay $15 for 30 vials of the Chelating PX and $15 for 30 vials of the Amphoteracin B. This is after insurance. Shipping and the atomizer is extra. The standard dosage is one vial Chelating PX per day and one vial of the Amphoteracin B per day. The shelf life of both of these products is 60 days. Therefore if you had to cut down to every other day your cost would be a total of $30 for two months. If you only did the protocol every third day or less, some of the medicine would have to be discarded.
I wouldn't assume you would be able to do it very infrequently. My daughter is nearly housebound and she does it daily with a little break here and there. It sounds like alot of very ill patients are able to do the treatment every day.
Brewer acknowledges that bacteria may play a role. I have the good fortune of working with an excellent ENT. A couple of months prior to starting the Brewer protocol my ENT prescribed antibiotics using the very same atomizer. It helped me quite a bit and I still do a maintenance dose. I don't know if Brewer is prescribing any atomized antibiotics.
What atomizer are you using ? The atomizer given to mewith the amph B is not working. The solution is clogging it up. Sorry if you've already posted this info.
We use the NasaTouch. According to the instuctions we are suppose to atomize distilled water daily to keep the nozzel open.
lfish, can I ask how you're doing now with Dr. Brewer's protocol? Are you being exposed to mold at all or are you in a mold-free environment? My son and I started the protocol a week ago and we both feel pretty crappy, but I'm curious when people start feeling better. It doesn't seem like there are many of us doing this protocol yet, so it's hard to compare notes. Oddly enough, I felt really good the first day I was on the nasal sprays but went downhill from there... Hope you're doing better.
We have been doing the protocol for about 6 weeks. It hasn't been easy. The die off has been fairly distinct. I don't feel we are having nearly as much die off now. We are better than we were during the worst of the die off, but we have not made it back to the point we started from. Things have been complicated by the existance of bacterial sinus infections which have plagued us for years. According to Brewer, most patients start to get better in about 2 to 12 weeks, so now we are somewhere in the middle of that.
We had an excellent ERMI test the last time we did one, which was over a year ago. I plan to do another soon. We treated our entire house with a product called TM-100 which is an enzyme based mold killer. So I feel we are living in a low mold environment. I don't think anyone can live mold free, unless you live in a ceramic house with hospital grade HEPA filters.
Feeling worse is suppose to be a good thing, and I believe this is true. Brewer said the die off symptoms last "a couple of days to a couple of weeks" but his nurse said it is a couple of weeks to a month or more. The line is not real distinct. I surmise that from the time the die off is mostly over until you actually feel better would take a while since there naturally would be a lot of mycotoxins to excrete.
Hi all, my $0.02.
This study is of interest to me also. I used to be on monthly allergy desensitization injections for cat & dust mites which caused respiratory symptoms but since with CFS and having to move I haven't bothered to keep up with it.
Now I noticed that my dustmite & cat allergies have been increasing lately. Yet I notice that when I have IV Vitamin C therapy I get immediate relief from these allergies that seems to persist for several days. The same effect seems to help me by giving me an energy & brain boost.
So it certainly seems to me that IV Vitamin C seems to give the immune system temporary relief.
I have also noticed that the same effect happens when I go camping (one of my hobbies is Gold & Gemstone prospecting) - which I always look forward to because I get a huge relief from my CFS symptoms even camping for one night. Despite the fact that I've sometimes camped forgetting to bring a pillow on a hard uncomfortable ground I feel more refreshed in the morning than I do having slept in a comfortable bed at home!!!
I can also relate that the house I was living in when my illness started did have some past water damage & some internal mold.
The other day I was thinking about this and I actually tested myself by taking a high dose of anti-histamines and I felt like I got quite a positive reaction from them. I need to trial this more to see if it is the antihistamines that produce the effect. I haven't discussed this with my CFS doctor yet but it seems to me that these are all clues that something is aggravating my immune system and contributing to poor energy. I suspect this could be mold.
Perhaps toxic mold is one of the things that causes the immune system to create inflammatory cytokines that causes our "wake-up feeling trashed" experience and depletes our B vitamins & antioxidants leaving Mitochondria exposed to oxidative damage?
Redaxe, you think possibly you have a mast cell activation issue going on? Antihistamines have been very helpful to me and for symptoms that are not typically "allergy" related. I've created a mast cell protocol with my doctor using Zyrtec and Zantac twice a day (h1 and h2 blocker) along with ketotifen (mast cell stabilizer) and Neuroprotek (by Algonot and Dr Theohardies from Tufts www.mastcellmaster.com ). I use Atarax at night in place of the second dose of zyrtec. This crosses the BBB and does not have the problem of becoming ineffective over time like Benadryl. I do use Benadryl for breakthrough reactions. My daughter's standing pulse rate has dropped from about 120-130 to upper 80s-lower 100s, depending on when I catch her. usually in 90s. I've been able to split my beta blocker in half and am taking a very low dose now. I can stand and feel like my anaerobic threshold has slightly increased from a pulse rate of 85. My daughter takes Gastrocrom (sodium cromolyn) for a mast cell stabilizer and Allegra with Pepcid for H1-h2 blockers. I do have mitochondrial damage at respiratory complex one of electron chain transport.. so something is causing that. I've had 3 positive mycotoxin tests as well.
Grant, who is referred to in this thread, mentions mast cells and how fungal hyphae can trigger them. I've found research to support fungus and lyme as mast cell triggers. Once one has MCAS, heat, stress, foods, chemicals, pollen, mold, etc can be triggers.
Do you know if/how mycotoxins relate to mast cell activation?
Sorry no I my knowledge of inflammation processes is pretty non-existent.
Its something I've been thinking a lot about though because as I mentioned when I go camping I get a huge improvement in my symptoms, which typically return when I enter urban areas. I can also say without a doubt that some buildings have had a worse effect on me then others. For instance last year I stayed in a relatives house for a night & woke feeling absolutely shocking (this was directly after I had a 3 week relief from CFS when I camped outdoors in the Gold and Gemfields of central Queensland - and that house does have some issues with dampness and mold)
So I just tried the anti-histamines to see if it would have an effect. I can't really prove one way or the other just yet but I have noticed that when I take I do seem to feel better (that is more energetic, sharper mind etc)....
so I am thinking of seeing an allergy specialist down the track.
Soulfeast: Thanks for the information - so can I assume now that I'm not the first person to have noticed this then? That is encouraging and It gives me some hope that I may be narrowing in on what could be a central cause of the problem.
There are lots of people who find their MECFS goes into remission when they change location or go camping etc. It is usually called the "location effect" and/or "mold avoidance". Look for the location effect facebook page and forum, look in the "Biotoxin" section of these forums, go on Yahoo's CFS Locations board. There are some blogs too by properly-defined PWC's who experience this. Lot's of Dr Shoemaker's work is relevant. Look at Cort Johnson's healthrising site for stories and look up "chronic inflammatory response syndrome" - you probably have it. Lot's of people on the CFS HealClick site talk about this too.
I have no idea why this isn't the topic of intense research and discussion by patients...!
Hi Redaxe, I've heard of others in mast cell support groups. There may be a mast cell element for some of us. My daughter and I seem to fit the POTS/OI, EDS/CTD, MCAS trio presentation and thus have a tendency to have mast cell issues. Working on this angle since I am seeing results that seem correlated to mast cell treatment.
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