Discussion in 'Latest ME/CFS Research' started by slayadragon, Apr 11, 2013.
How have you been feeling, Ifish? Still good after the die-off?
I got a call from Hopkington Drug today- they cancelled their partnership with CVS Caremark! So basically I would have to pay out of pocket for CSM, which would be $415 a month. Does anyone know any other pharmacies to get it from?
I think CSM can be bought at any pharmacy. Why would you not be able to?
[quote="Ifish In my current regimen, I use mupericin, Chelating Px and Ampho B.[/quote]
is brewer prescribing the mupericin? or who is?
I think my doctor just wanted to avoid the sugar or aspartame 3x a day... but good to know I can at least get it anywhere.
I found another thread mentioning another compounding pharmacy that does it with xylitol, and I have a call into them. Is xylitol any better than aspartame?
Yes, I believe xylitol is much better than aspartame.
As well as being a sweetener, xylitol is thought to have health benefits itself.
I am still significantly better, but not completely well. There is no question that my quality of life is much better. I am doing things I wasn't doing before. I started the mupirocin about ten days ago. It set me back some, but I'm doing better now. Time will tell how I do in the long run.
is brewer prescribing the mupericin? or who is?[/quote]
Yes, Brewer is prescribing mupirocin
I just realized a Red Raider was the leading researcher!! Guns up! Wreck 'em!
When you say Mupericin do you mean Mupirocin? I just want to make sure i'm looking at the correct medicine.
You are correct. Sorry about the poor spelling. The brand name is Bactroban.
I'm not sure if this has been addressed. I'm sure Brewer recommends to deal with a moldy environment while doing the treatment. I feel living here in Florida I am constantly exposed even outside. I'm wondering if that would keep the treatment from working if you are continuously breathing in more mold.
I am.still feeling very bad on the treatment. Very tempting to throw in the towel. I've been couch bound in the past and I'm close to being there most of the day on the treatment. So depressing unless the die off itself is making me depressed. Im wired tired during the day so can't even nap.
I am backing off to every other day. Going to get charcoal and other binders. My doc called in the script for Brewer protocol at my request but does not understand the concept of the treatment at all. So I'm on my own here. (Like many)
My main concern is am I doing any good here if breathing in new mold every day? I'm not in a known water damaged building currently but Florida is after all pretty much one big swamp.
Does Brewer have his own website?
Im not aware of one.
Many if not most of Brewer patients are from the Kansas City area which has a lot of rain, humidity, and mold. He has never suggested moving or brought up the possibility with me. Your reaction is similar to mine. I cut back also and turned the corner at seven weeks.
I really don't think that geographic location matters to Brewer. He emphasizes having a clean living space and treating the sinuses.
Thanks again for your response! I would love to do some kind of extreme mold avoidance but if that is the cure its going to be impossible for most of us to get cured. Its nice to hear these patients of Dr. Brewers are achieving results even though I am sure they are exposed to at least outdoor mold like myself.
I am now doing every third day with the treatment. Unfortunately I cant be flat out day after day for an extended period and it was really wiping me out. I feel pretty good by day 3. Maybe even better than normal this last time but then its time to do the treatment again. At this every third day rate I am able to still do the things in life I have to do. I can usually work out a little and am not on the couch all day. My intentions are to do this for a few more weeks and then every other day until I work up to the daily protocol. I also have started taking a lot of Chlorophyllin. It is some how different from regular Chlorophyl and I read it helps remove mycotoxins from the body. I also ordered Charcoal that I will use as well. I think we do have to be careful to make sure our bodies can process these mycotoxins. Im feeling like the way I am going about this is not only conducive to maintaining a some what normal life but may be safer as well. ???
Are you sure where you're staying is a safe environment (inside)? Have you gotten it checked out, and if you have how did you get it checked out?
No, I am not sure of that and don't have the money to run the tests. I have been sick for over 30 years though. Started in California, remained the same in Montana, same in North Carolina and then in Florida. It only got worse when I move to a new condo complex about 4 years ago. That is the only time in this illness I was couch bound and nearly home bound. Went from working full time to barely being able to walk. I never even considered my environment prior to this experience. It was built right in the middle of the wetlands. Either the wetlands affected me (that is actually what I think it was due to some other experiences) or new building materials giving off other VOC's.
I moved to a different place in Florida, not new or in the wetlands and recovered slowly over time. Within about a year I was back to being able to work and my legs and body were fully functioning again.
Currently I am in a very nice home but we are renting it. We move in a year (will be buying) so I really cant afford to test this house and do any remediation. We did have some one who specializes in remediation come take a look at our house and there were no obvious water damage issues. Im not saying there couldn't be an issue with this place too but money is tight. Specially when you are sick!
After our lease is up here, we do plan to test any house before we buy. I also looked into that stuff Ifish had his house treated with and we may just do that too for safe measure. Currently I also have very good air purifiers in every room in our house. When you walk outside here though you can smell mold and mildew. That is true of a lot of Florida. I cant just move into a bubble. Wish I could but it is not an option. Im trying to do the best I can though.
This is why I asked the question as to how much Dr. Brewer talks about exposure to mold while on the protocol. It looks like he doesn't want you living in an obviously water damaged building but isn't asking people to take extreme measures either. I feel better knowing that!!!
I mention this because being in a safe house can make all the difference in the world. I'm speaking from experience on that one.
Also, you might think your house is clean but that's not always the case. Just because there is no visible water damage does not mean there is not mold For example, we used the ERMI test earlier this year in February and the results came back as though we were in the top 95% (very clean) houses. I went through a lot of treatment and nothing seemed to make any difference. We finally went to retest and this time used an air quality test and it showed very high levels of Aspergillus, stachybotrys, and many others.
In Texas people have to be licensed to tell you something is mold and to clean it up. Most states do not have those types of regulations.
Anyways I'm just throwing that out there because it is a huge deal.
Did you do your ERMI test through Mycometrics? It's interesting that the ERMI did not show anything where the air quality test did -- I thought I read that the ERMI is a more reliable test...?
You can also try a Google Site Search
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