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