posted
Jane2904, Sorry, I haven't been on this forum for a while. Here is an update. My wife, youngest daughter and I have entered into the third month of the treatment. My oldest daughter has returned from college and is now in her second week of treatment.
I have been ill for nearly 23 years. During time, I have been able exercise minimally. Over the last couple of years I've lost this ability altogether. I have not exercised even a single day for the past year and for about two or three years prior to that only very rarely.
I suddenly gained the ability to exercise about a week ago. I am now able to walk a couple of miles, about 30 minutes on most days. I now know I feel better and I have more energy than I did prior to the protocol.
For the last couple of weeks my wife has said she is "definitely" better than before she started the protocol. She is not well by any means, but there is a clear and noticeable difference.
My youngest daughter is by far the sickest. She is 18 years old and had to quit school when in the 6th grade. She has not been well enough to even tutor at home for the last 3 1/2 years. Her excursions outside the home are very limited due to her neurological symptoms. The only thing I can say for certain is that she is feeling better than she did during worst of the die off. I am not sure if she is better or not than she was prior to the start of the protocol.
My older daughter is the least effected by the illness. She lives a fairly normal life, but has a great deal of fatigue and sleep issues and other symptoms. The start of the protocol has effected her similarly to the rest of us but she is still very active. She is definitely feeling worse from the die off.
What really stands out about the treatment is how much is effects fatigue and malaise. During the die off I often slept 10 hours a night, sometime more, while barely moving a muscle. In order to get through it we had to pare down our activity level to the bare minimum. The good news for the three of us is that the worst seems to be over.
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posted
Thank you for the update, Ifish. Glad to hear that 3 of you are making progress.
Can you tell me exactly what your protocol is? I have tested positive for aspergillus in both my sinuses. Was doing a different protocol with minimal success.
Thanks so much!
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For some the die off is too much and he will reduce the protocol to every other day or every third day. Some patients connot tolerate the amphotericin B. I beleive he is using nystantin for most of these patients.
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quote:Originally posted by CherylSue: What binders is B....r not using? CMS? Questran? So he doesn't do Dr. S's protocol?
Brewer's protocol is entirely different the Dr. S protocols. He feels the issue of mold patients is the continuous production of myctoxins growing in the sinuses. He does not feel the issue lies with an inability to detox, thus is generally does not recommend binders.
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posted
birdie67, It has been a tough ride but things are really looking up for us now. Just remember that the die off is difficult, but you have to keep your eye on the prize. I suddently got better in the third month. My wife is better but really up and down. My youngest daughter seems to be slowly working her way up to the break even point. So it is highly variable. Best of luck and let us know how you do.
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Jane2904
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posted
Thanks for the update Ifish, so glad to read that things are improving for you and your family.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
My wife and I took our 18 year old to see Dr. Brewer. Much has happened in the three months since we saw him last. We covered a significant amount of information which I plan to post, but I will need to do that in installments.
RealTime Labs has formed a scientific committee with eight members. All are MDs or PhDs. Brewer is on this committee. They have collected data on approximately 300 patients. Of this number Brewer has attempted to treat approximately 150 patients on the AmphoB/Chelating Px combo. About 1/3 could not consistently stay on it due to side effects from the AmphoB, including nose bleeds. (He is developing alternatives - more on this later).
Of the remaining 1/3 (approximately 100 patients) 94% have reported improvement and approximately 25% have returned to normal. These patients have been on the protocol on average about 6 months. The 6% that did not improve are not necessarily lost causes. Some might need more time, some might have bacterial infections holding them back. (Brewer believes that antibiotic resistant staph infections may be involved in many patient - more on this later).
Brewer will use this data to publish another paper. This might happen within the next couple of months or so. He recognizes that it will fall short as far as a lot of folks are concerned, since it is not a blinded study and improvement is measured subjectively. One thing that will be measured and reported scientifically is a drop in mycotoxin levels due to this treatment. This drop in mycotoxin level corresponds directly to improvement in reported symptoms.
He has discovered that it can take a very long time for extremely ill patients to improve. He recently saw a patient who had a slight, if any, improvement at six months.(This patient had been bed ridden with extreme abdominal symptoms including vomiting several times a week.) At one year on the treatment the patient is 50 to 60% improved and is continuing to improve.
We reviewed my daughter's laundry list of symptoms including anxiety, nausea, sensitivity to light, sound and touch and bladder and gastrointestinal discomfort. All of these issues have improved in one patient or another. Some patients have experienced a complete resolution of these type of symptoms.. Therefore, there exists a possibility of improvement in all these areas. (In fact my daughter did report improvement in some of these symptoms)
Six of Brewer's patients who became well attempted to discontinue treatment. All gradually relapsed over a long period of time but improved again upon retreatment. He does not know how things would be handled long term. Maintenance dosing might be required or the mold colonization might be completely eradicated if treated long enough.
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Jane2904
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posted
Thanks so much for the update IFish,
Glad your daughter is improving.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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I was tested by nasal swab and it was cultured. It took about 3 weeks for results. I will go back through my labs and see what lab it was, I can't remember.
I now doing BEG nasal spray and also Itraconazole. I also take cholestyramine to mop up the toxins that are being flushed through my sinuses.
I am seeing improvement. It is slow, but it is happeneing.
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posted
Brewer now believes antibiotic resistant staph infections may be a cofactor in many patients. (I believe Shoemaker refers to this at MACRONS - multiple antibiotic resistant, coagulase-negative staph). He does not seem to think there really is a very good test for it as it can locate to far up in the sinuses to culture without anesthesia. Dr. Psaltis from Australia has done some interesting experiments with staph and mold in sheep. His group took healthy sheep and divided them into three groups. In 1/3 of the sheep researchers deposited staph into the sinus. A fair amount of biofilm grew. In another 1/3 of the sheep they deposited aspergillus. A fair amount of biofilm grew. In the last 1/3 they deposited both staph and aspergillus. The biofilm exploded exponentially. Brewer's drug of choice to treat the staph is mupericin. ASL pharmacies had been producing atomized mupericin, but according to Psaltis the dose was far to small. So now ASL is producing a high dose mupericin (100 mg). Psaltis believes the mupericin at this dose will not only kill of the staph, but will also break up the biofilm, possibly better than the Chelating Px. A fair number of ENTs have used this formulation for chronic sinusitus patients and have been enthusiastic with the results. Mupericin is one of the ingredients in Shoemaker's BEG spray. I don't know how the dose compares to ASL's atomized mupericin. Brewer is not doing any testing as he feels there really isn't a practical way to do it. He believes, for now, that appropriate candidates are individuals that are not getting better on the mold protocol or patients with chronic sinusitis. The treatment period is one month. My 18 year old daughter and I plan to go forward with this.
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posted
Ifish - how recent was your discussion with Dr. Brewer? Any idea on cost?
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
All my other scripts from ASL Pharmacy have been treated like any other prescription medicine, so it should be covered by insurance. I just saw Brewer last week.
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posted
Very interesting that Dr Brewer isn't using binders any more. I have noticed a slight improvement on them, and absolutely no side effects, so heck I'll keep taking them if they help me eliminate this stuff even a little bit quicker!
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posted
About 1/3 of patients can't tolerate the Amph B. Bleeding is one of the issues that is causing problems. Brewer now has about 50 patients on Nystantin. It is not quite as good as Ampho B in the test tube. It does have the advantage that it does not seem to bother the sinus at all. It also does not absorb at all (I think a small amount of Ampho B does absorb), so it is possible to take it multiple times a day.
It is too early to know how effective Nystantin will be. However, a number of Nystantin patients have had die off reactions and the percentage of such patients is similar to the percentage of Ampho B patients that had die off reactions.
He now only has about 15 patients on Intracanazole. He feels it can work but it isn't nearly as good as Ampho B.
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Jane2904
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posted
Hi Ifish,
Thanks for the updates.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
OK, I have results that surprised me so I am needing some feedback. When I started on this journey three years ago, my first LLMD tested for the HLA gene test.
I tested positive for the gene that does not detox mold well. It was no surprise to me as I seem to react in moldy environments.
I was also in a WDB for a brief time in college.
When my progress in treatment stalled, I thought now would be a good time to look at the mold issue.
I just received the results back from my LLMD and all three types were negative. The only group that showed any detectable levels was the trichothecene at .11 ppb.
I can hardly believe it. I really was hoping that this was the missing piece. I have done a little research on the internet and read that Dr. Lisa Nagy says the use of a sauna can increase the numbers.
Has anyone heard about that? Also, increase the numbers from negative to positive? Can I rest assured that the negative is truly a negative?
Arrggghhh?!!! Help anyone?
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posted
Did you do a urine test? If so, I'd generally accept the results. Not a lot of gaming there and they account for dilution levels due to water intake.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
Yes. I had the realtime lab test urine test done. It tested for three different types of mycotoxin.
What I am trying to figure out is if the mycotoxins can get buried in tissue and not be "free floating" in urine?
Posts: 538 | From kentucky | Registered: Nov 2011
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quote:Originally posted by soccermama: OK, I have results that surprised me so I am needing some feedback. When I started on this journey three years ago, my first LLMD tested for the HLA gene test.
I tested positive for the gene that does not detox mold well. It was no surprise to me as I seem to react in moldy environments.
I was also in a WDB for a brief time in college.
When my progress in treatment stalled, I thought now would be a good time to look at the mold issue.
I just received the results back from my LLMD and all three types were negative. The only group that showed any detectable levels was the trichothecene at .11 ppb.
I can hardly believe it. I really was hoping that this was the missing piece. I have done a little research on the internet and read that Dr. Lisa Nagy says the use of a sauna can increase the numbers.
Has anyone heard about that? Also, increase the numbers from negative to positive? Can I rest assured that the negative is truly a negative?
Arrggghhh?!!! Help anyone?
It is important to understand what the test shows and what it does not show. It has to be interpreted by an expert. I am not an expert but there are a few things I can pass along. The test shows how much mycotoxin is excreted in a single sample. It does not show how much is stored in the body. When you excrete a mycotoxin you are in fact detoxing because the mycotoxin in leaving the body. If you are a poor detoxer than it stands to reason you might excrete a lower amount.
I have done several tests and the results have been highly variable. I have had a mycotoxin be at zero on one test and positive on another. Brewer has had a number of patients with initial negative tests who then had positive tests on the second attempt. According to Brewer we don't excrete mycotoxins at the same rate all the time. I have also read that some is excreted in the feces.
The one thing we know for sure is that on this one occasion you excreted a dangerous mycotoxin. (You should google trichothecene and you will see what I mean) I believe that further inquiry is warranted.
If you are not working with a knowledgeable doctor, you might consider just calling Dr. Hooper at Real Time Labs.
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quote:Originally posted by RC1: I did this to get rid of biofilm, it's crazy how well it works. It works a lot better than Chelating PX, in my opinion.
I did it three days in a row and my post nasal drip was completely gone. It came back though after a few weeks. I'm going to start doing it every other day, with a saline rinse on my day off.
The big question is this. What will happen when I add the Ampho B? I went off abx for six weeks in January and I had a big Bart relapse.
Regarding that, I don't think that Septra with Mino and Zithro will clear the infection...based on my experience. I'm taking the whole dose of Rifampin one time a day in the morning. This is making me herx like crazy unlike the Septra protocol.
When the Bart herxing subsides I will go back to addressing the sinus problem. I did have that cat scan and it came back all clear, the ENT said my sinus looked perfect, other than having a deviated septum.
Ifish, thanks so much for your post. Please keep us updated as you find out more. I think I'm going to ask my LLMD for the atomized Nystatin instead of the Ampho B.
Hi RC1, Your link to the protocol is broekn, could you tell us what it was?Thanks Posts: 1 | From UK | Registered: Jul 2014
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posted
Thanks, lfish for your comments. I have an appointment with a functional medicine doctor to see if my detox pathways are functioning.
This research article demonstrated that the Realtime Lab test is highly sensitive and specific but we know that the levels can increase after detox methods are employed.
quote:Originally posted by soccermama: Thanks, lfish for your comments. I have an appointment with a functional medicine doctor to see if my detox pathways are functioning.
This research article demonstrated that the Realtime Lab test is highly sensitive and specific but we know that the levels can increase after detox methods are employed.
posted
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.
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posted
I had a urine test done at Real Time labs and had a high level of Ochratoxin A.
My doctor prescribed Active Sinus rise saline 30 mins before the Nasal Touch atomizer, which I am using 60 Chelating Agent 15mg with 60 Mupirocin 15 mg.
Then after that, I atomize 60 Amphotericin B 5 mg.
The Atomizer Nasal Touch battery operated unit, atomizes the medicine into each nostril.
I am to continue this twice a day for the next 30 days, we will see how it goes.
-------------------- Bartonella (Rifampin 300 mg 2x day, A-Bart, A-Iflam) Toxic mold exposure (Cholestyramine 4x day) Heavy metals Marcon staph infection (Beg spray) Posts: 53 | From Maine | Registered: Jun 2014
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quote:Originally posted by thehause: Please detail the treatment in the thread... if it is just mupirocin, or with a chelating agent, saline flush, etc... would like to hear.
Thanks!
For most people, it is a two part daily protocol:
1. Atomized "Chelating PX” contains EDTA and Polysorban X in the morning 2. Atomized Amphotericin B in the evening
For some the die off is too much and he will reduce the protocol to every other day or every third day. Some patients connot tolerate the amphotericin B. He is using atomized nystantin for most of these patients.
Brewer is also using atomized mupirocin for patients he suspects has multiple antibiotic resistant staph. Generally these patients will do the Chelating Px in the morning, the Ampho B at least an hour from everything else, and the mupirocin in the evening. The protocol has been discussed extensively at http://forums.phoenixrising.me/index.php?threads/detection-of-mycotoxins-in-patients-with-cfs.22743/
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quote:Originally posted by thehause: Please detail the treatment in the thread... if it is just mupirocin, or with a chelating agent, saline flush, etc... would like to hear.
Thanks!
For most people, it is a two part daily protocol:
1. Atomized "Chelating PX” contains EDTA and Polysorban X in the morning 2. Atomized Amphotericin B in the evening
For some the die off is too much and he will reduce the protocol to every other day or every third day. Some patients connot tolerate the amphotericin B. He is using atomized nystantin for most of these patients.
Brewer is also using atomized mupirocin for patients he suspects has multiple antibiotic resistant staph. Generally these patients will do the Chelating Px in the morning, the Ampho B at least an hour from everything else, and the mupirocin in the evening. The protocol has been discussed extensively at http://forums.phoenixrising.me/index.php?threads/detection-of-mycotoxins-in-patients-with-cfs.22743/
I've actually done this protocal per Brewer. i wasn't sold it helped. He refused to get my sinuses tested, which also made me skeptical. just sharing. He did recommend I try the product Sinusoothe.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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quote:Originally posted by Anxiety soldier: when you use the nasal touch, and breath the medicine in, do you let it run back out your nose?
Also at the end do you blow your nose to get out all the crap or does that effect the treatment?
My doctor didn't give me then clearest of instructions.
Thanks
The medicine comes with specific instructions. Generally, yes, you let it run out your nose and eventually you will have to blow it.
Posts: 27 | From USA | Registered: Mar 2014
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posted
Anyone experienced balance or slight vision problems from this treatment. I feel like I'm losing the ground I just made up the last few months . might just be the die off
-------------------- Bartonella (Rifampin 300 mg 2x day, A-Bart, A-Iflam) Toxic mold exposure (Cholestyramine 4x day) Heavy metals Marcon staph infection (Beg spray) Posts: 53 | From Maine | Registered: Jun 2014
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Up for anxiety soldier
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
Since I started this thread I had a big relapse/ realization...
I had to quit the sinus treatment because I had gone off abx (only for a month) and relapsed Bart hard. I am really beginning to believe that Bart is a much bigger player in this illness that anyone realizes.
I think there are many DIFFERENT reasons for people staying sick. For some it may be Lyme, others Babs, mold, sinus mold, Protozoa, thyroid dysfunction, or the many other things that may have gone wrong with our bodies along the way. In addition to that there are many other opportunistic infections like CPN, or Mycoplasma, and viruses.
It's not only Lyme. In my case I had MANY things that were contributing to my illness. It took me four years to realize my biggest problem was Bart. In my case I treated all of the other things extensively (with the exception of the nasal fungus) which I had to quit after a few months.
For those of you who have Bart for sure, don't under treat it. The symptoms change so much through the process of treating it aggressively, that you would swear it's something else surfacing. Stick with it.
It takes a long time to treat Bart successfully, up to 9 months or even longer. There are symptoms that can be Bart even though they are assigned to other infection, like air hunger and sweating. These symptoms are now gone for me, from Bart treatment.
For the first time I can say that I believe I am going to get well. Not just 80-90% or so...
I've been back at treating Bart for 5 months so far, I still have symptoms but I am now getting better than I ever have from any other treatment. I still have a little ways to go, DO NOT UNDERESTIMATE THIS INFECTION!
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TNT
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posted
I'm so glad for you RC!!! This has been my suspicion, too, for a while-- BLO anyways (which would include Brucella).
If you don't mind, what are you doing for your bart treatment?
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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posted
I posted it on your other thread TNT.
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GretaM
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Member # 40917
posted
Agree with RC1 and TNT re bart and bart lo being the root cause of many stubborn to get rid of symptoms. Sinusitis, irritated bladder, sore throat also symptoms of fungal infections.
Started sporonox for systemic fungal infection re real time labs results.
My doc said binders are crucial during any mold treatment protocol.
Wondering what binders you use for the nasal fungal treatment?
Also do you use l-glutathione to release mycotoxins from fatty tissues?
Thanks Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
We are about to hit the six month mark on the Brewer protocol. My last detailed report on progress was at the four month mark. What has stood out the most these last few weeks is the progress made by my youngest daughter who will turn 19 next month. My daughter has battled ear and sinus infections throughout her life. In January 2008, while in the 6th grade she underwent a balloon sinuplasty procedure which caused a permanent crash. She has never been able to return to school since then with the exception of a few weeks of part time school in 2010. For the last four years, she has not even been able to tutor at home.
My daughter has been continually doing one treatment or another since her crash. She was treated for lyme and coinfections for several years. In 2009 she did six months (seven days a week) of twice daily high dose IV antibiotics for lyme and coinfections. She has done many CFS related protocols, including protocols for mitochondrial dysfunction, immune boosters, detoxification regimens, IV and oral chelation therapies, IV vitamin C, Meyers cocktails, detox IVs, etc. Prior to starting the Brewer protocol she had gone through two different protocols for mold detoxification and treatment. None of these treatments have resulted in significant benefits
My daughter suffers from extreme fatigue and malaise. She has chronic sinusitis (requiring several surgeries and never ending antibiotics), sleep disturbances, mental fog, headaches and body pain. She has issues with her gut and bladder and suffers from nausea and anxiety.
By early 2014 her symptoms left her nearly home bound and able to do very little. She would often go a week without leaving our house (usually for doctor appointments). When she did leave the house it would require a great deal of planning and preparation. She would have to take anti-anxiety medication, anti-nausea medication, a cold pack, a vomit bag, among other things. She could only travel a few miles at a time.
I reported two months ago that my daughter was better but it was not a profound improvement and that she had small windows of feeling better. Since then the windows have become bigger and more and more frequent. She is now able to leave the house almost every day and often multiple times per day. Lately she has been able to leave the house without the aid of anti-nausea and anti-anxiety medications. She has obtained a learners permit and is practicing driving on most days.
My daughter has been going to restaurants, shopping, ice skating, and bike riding. She went on a 40 minute car trip with only one stop. All of her symptoms have improved, including the malaise, fatigue, anxiety, nausea, bladder and gut issues.
My daughter is now able to concentrate enough to read books more often, and seems to be busy all of the time. She has a very very long ways to go, but after trying everything under the sun for nearly 7 years she is now experiencing solid improvement.
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GretaM
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posted
Yay! Fantastic news about your daughter's progress!!!!
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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dbpei
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Yes! It is amazing news! Congratulations to you and your family on finding a treatment protocol that seems to have worked for you all!
I really appreciate your detailed report of your journey with this treatment - as you explain that it sometimes takes months for real improvement to begin.
This is important for those venturing this treatment to know so they don't abandon it before it has had a chance to work. Thank you so much!
Posts: 2386 | From New England | Registered: Aug 2011
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Jane2904
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Thanks for posting.
I am so happy for your daughter!!! Congrats to you and your family!!
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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surprise
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Brings me great joy to hear a child getting well-- thank you- and you are an amazing parent. God bless--
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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ukcarry
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That is fantastic news. Hopefully, your daughter can now start to live a much more 'normal' life. Congratulations to you both for your persistence and determination.
Posts: 1647 | From UK | Registered: Nov 2008
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dbpei
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I just started taking amphotericin B and mupirocin 2 x daily through atomizer. I am surprised at the thick stuff coming out of my sinuses throughout the day. Some has been blood smeared. I did not realize I had so much inflammation and gunk in there.
I feel stuff happening in my head and ears. Head feels burning and tingly. I have some dental and jawbone pain as well but it is not constant and it is tolerable. I notice my tinnitus is acting up more and I definitely feel a herx like effect, but it is not as bad as when I was on ABX.
Hoping we are on to a treatment that is going to help me get better! I will write again to update you in a few weeks.
Posts: 2386 | From New England | Registered: Aug 2011
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CD57
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up
Posts: 3528 | From US | Registered: Apr 2007
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dbpei
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I am into the second week of amphotericin and mupirocin treatment. I have rhinitis and am still expelling gunk from my sinuses at different times of the day. I feel a 'burning and sizzling sensation' throughout my head and sinuses with an increase in head pressure and tinnitus and electronic sounds.
It also feels like my jaw bones are being squeezed and tightened. This dental and jaw pain used to be on just one side, but now I am feeling it on both sides. I also feel a little nauseous and tired.
I have a very large, painful boil or cyst of some type on my chin. (staph?) Not sure if that is related but my complexion is usually good. I tested negative for MarCons last year, but perhaps the swab was not in deep enough.
Hopefully something big is happening. I did not do the Real Time Lab testing because my insurance would not cover any of it. I sure do wish I knew what we were fighting here - whether fungus, staph infection or both.
Posts: 2386 | From New England | Registered: Aug 2011
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Jane2904
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Dbpei, thanks for the update.
Good luck !! Posts: 1357 | From Massachusetts | Registered: Jun 2008
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"I have a very large, painful boil or cyst of some type on my chin. (staph?) "
It "could" be a good sign as when the body tries to heal itself it will try to push things to the skin (the safest place) to vent the dis-order.
Posts: 764 | From Northwest | Registered: Sep 2014
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CD57
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Exactly what I was thinking Lookup!
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dbpei
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My symptoms seem to be worsening. I have a lot of burning, sizzling sensations in my face and sinuses that travels to the side and other parts of my head and left eye. Recently, there are a few little painful bumps on my scalp near my forehead. I have also had some odd pain in my neck on that side.
I am still using mupirocin and amphotericin B twice a day with the atomizer. It is almost a month now. There are times of the day when I have to blow my nose and a lot of stuff comes out. It is usually clear, but sometimes there are some clots of blood or some other substance.
I think the cyst above my dental implant may be rupturing. I saw an oral surgeon yesterday, to see if he thinks it is time to take my dental implant out. He is going to remove it next week! Last year he didn't want to. But after suffering another year with these symptoms, he agrees with me that removing the implant could make me feel better. No guarantees though.
My LLND is away until a few days before the sugery . I will probably stop the atomizer treatment when my first month is complete. The oral surgeon says I will probably need a bone graft to repair the hole he expects I will have in my sinus after the implant is taken out.
I will write after the surgery and let you know if there are any changes. Good or bad!
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Could be Rhinitis... be careful irritating your sinuses day in and day out.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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dbpei
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The Brewer protocol needs to be done at least a month. Most need to do it several months before seeing improvement. I talked to the pharmacist about my reaction to treatment and he seemed to think this was indicative of successful treatment. I sure hope that is the case. I am going to take a break though with my surgery coming up.
Posts: 2386 | From New England | Registered: Aug 2011
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I did it for nearly a year without much change, so there's that too.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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dbpei
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Did it irritate your sinuses much? I just want to know whwther the stuff coming out is stuff that needs to get out or caused by the irritation to my sinuses Posts: 2386 | From New England | Registered: Aug 2011
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It didn't at first - it burns of course and that is irritation - but over the course of time I got chronic irritation (Rhinitis), and it hasn't really calmed down since. It sucks.
The stuff coming out is likely mucus - mold will likely be invisible, if there is any at all.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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dbpei
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thehause, so sorry to hear this. Do you use any type of netipot with a saline solution to help? I called the pharmacist and he strongly recommended this. It would probably help, with or without the atomizer treatment.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
I didn't use Netipot brand, but another brand of saline solution rinse. I also used Sinusoothe at times and SinuOregeno - they maybe helped a little.
Basically, it takes steroids to calm down Rhinitis and that may or may not last. And it is it's own bag of worms regarding immune system.
Brewer didn't want to get a culture of my sinuses, which I thought was weird since it would be potential confirmation of a theory. I think that the scientific method hasn't been applied to everything I've been through - perhaps to avoid criticism as times - and that is disappointing, as you can imagine.
Hope that helps.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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dbpei
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Yes. It's too bad that he didn't take a culture. Do you think the lab below might be of help to you? I emailed them with questions and they got back to me promptly.
posted
Not really. What I am talking about is cutting me open (or getting highly invasive) and sampling the innards of my sinuses. That needs to be done in a very sterile environment.
I know this lab may try to do some of that, but it seems a little hard to say an oral sample (I don't know which one you had in mind specifically), wouldn't contain contaminants. Everyday things have fungus on them. But who knows.
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