Patient's Diary

Many CFS sufferers have asked us if they could speak to someone who has been treated as our Healing Centers. We usually must refuse such requests for two reasons. First, it is considered unethical to reveal the names and phone numbers of patients to other individuals without their permission, and second, such we have found that such discussions, which can be lengthy, may seriously impede the recovery of the CFS patient contacted. However, recently we discovered that one of our longer-term house guests had kept a diary that she was sharing with other patients and she has given us permission to share this with you. Every word is her own except for the changing of the personal names to preserve patient integrity. She tells both the pros and the cons of our treatment far better than we ever have. We trust that you will be able to gain a greater insight into the workings of our methods from this impartial description.

While I was staying at the Sanctuary last year, I kept a journal that I sent out by e-mail to people who had requested it. Here is the final entry, just posted; that I thought you might be interested in reading. If not, please ignore!

Maybe not, but I did dance for three hours at our granddaughter's wedding March 17th. A year ago I would not even have considered going to the wedding. This year, I not only had a great time at the wedding reception, I spent about two hours with the bridal party at the beauty salon, hung out at our daughter's house the next afternoon, and had dinner with her and her husband that night at a Thai restaurant-all of which I most certainly could not have done last year. And except for the need to rest for an hour before dinner Sunday, I felt fine all weekend and afterwards. Amazing!

We made a five-day trip of it so that we could stop in Quakertown going and coming for treatments with Dr. Poesnecker. It was very enjoyable to return there, thoroughly familiar with what to expect, as compared with my initial first few weeks at the Sanctuary and the Clymer and Woodlands Healing Research Centers when I was so disoriented and sick. But by the time I left on June 2nd, 2000 after two months there, I was feeling "at home" and definitely much improved.

Now, a year later, I continue to recover. Though not well yet, I am significantly stronger and I feel much better than I have for eight years. Although I haven't yet tried to walk farther, I can walk two miles most days, exercise, work at the computer, do needle art for several hours, and prepare meals. I've ventured out to Wal-Mart, the supermarket, and to a show of Manet still lifes at the Walters Art Museum, something I haven't been able to do in many years. Moreover, for the first time since we've lived here, I'm now able to have dinner in the dining room. Still mostly in seclusion, I'm certainly not able to live what most people think of as a normal life, but I'm feeling good, almost free of distressing symptoms. Some public places and certain social situations, however, as well 'as over-exertion, still bring on those symptoms. Sleep continues to be problematic. I have to spend twelve hours a night in bed to get barely seven hours of broken sleep.

In touch with Dr. Poesnecker by e-mail, receiving the natural remedies by mail, I'm still taking licorice in milk at 5:00 a.m. to increase my available cortisol. Three times a day I take Adrenal Cortex Extract and Mil-Adregen, two glandular formulations to strengthen the adrenal glands, as well as pregnenolone and 7-Ketc, to supplement my inadequate DHEAs and to rebalance the neurohormonal system. I've decided to give Seriphos another trial. It's supposed to help sleep by calming the hypothalamus-pituitary axis, but it had no effect on me at all a year ago. Maybe now that I'm in a different stage of CFS, it may help. Although I'm not able to live as I used to before CFS, I'm nevertheless much better than I was a year ago and encouraged to continue treatment.

As a matter of fact, I don't even want to live the way I used to live, constantly on the go, all day involved with other people. In solitude, with needle art; studies and reading; access to the arts through videotape, CDs, and the Internet; a beautiful campus in which to enjoy nature and exercise; and the good company of my husband, I'm thoroughly content. During the past eight years, my family and pre-CFS friends have mostly drifted out of my life. I almost never hear from them. At first, that was painful, but just as though they had all died, I've had to accept that they have other priorities and I must live and be happy without them. Now my social life is by e-mail.

Christa, who has been with Dr. Poesnecker for 19 years, told me how very rewarding it is to see people come to the Center so weak and ill that they cannot hold up their heads, and within a few months to see them smiling and chatting, and eventually restored to full functioning. While this is true of those who are treated at the Center, the success rate is not as high for those being treated by phone and e-mail.

Although I am quite sure Dr. Poesnecker's treatment is effective and could help any CFS sufferer, it is not for everyone. I know some people who have recovered under his care and others who have not. For example, Doris and Henry, who were at the Sanctuary during the same period I was there, did as much sightseeing and visiting as they could (collapsing afterwards), had no signs of recovery, went home to Australia, and have not been heard from since. They never got over their skepticism of Dr. Poesnecker or their anger at his idiosyncrasies, and presumably believe that the treatment failed them. On the other hand, Silvia, also at the Sanctuary with me, believing in Dr. Poesnecker and Dr. Cushing, has continued her treatment, making significant progress. Homeless a year ago, she now has a house a block from the ocean in Boca Raton. What's more, she's getting married April 21st and we'll be at her wedding!

As for the difference in responses to Dr. Poesnecker's treatment, first of all, it requires the willingness to suspend disbelief in an unorthodox system, one not accepted or validated by the medical establishment. Secondly, it requires much self-discipline and motivation by the patient. Third, it depends upon the patient's willingness to give up a lifestyle that is contrary to that person's well-being and healing. Fourth, it is expensive: though the price of the remedies is tiny compared to drugs, no insurance covers this treatment. And fifth, for those who, like me, cannot be helped by the remedies alone, residential treatment in Quakertown is even more prohibitively costly. As Dr. Poesnecker is dedicated to making this help accessible to as many people as possible, the daily costs are almost unbelievably low compared with any medical treatment. But as the days pass, the total bill becomes quite large, especially for those CFS patients disabled enough to be unable to earn income and who may already have depleted whatever financial resources they had in pursuit of other therapies.

Dr. Poesnecker's therapy is an odd coupling of 21st century technology (the regenerative therapy instruments such as the Magnatherm, the Myoflex, and the Microlight 830 low light laser) and traditional, natural healing practices. It bypasses the contemporary medical paradigm altogether. That does not mean it is unscientific. On the contrary, everything Dr. Poesnecker uses is based on sound science and validated by research as well as over 40 years of clinical experience-thousands of people helped to recover from CFS. It just doesn't fit the narrow medical model, which aims at "killing" disease by attacking the symptoms with drugs, surgery, and other destructive means. Dr. Poesnecker's therapy aims at providing the constructive means to support the patient's natural recovery. He understands CFS, not as a disease, but as a weakened condition of the body, primarily but not exclusively based on adrenal insufficiency and a dysfunctional hypothalamus-pituitary axis, a condition that can be corrected by positive methods. Such recovery is not available through a quick fix, which we have been taught to seek and expect-immediate relief. It is a slow, gradual process, with setbacks, with trial and error experimentation, without fast results. Not everyone has the tolerance for such a process. Still, his current caseload of distance patients is over 500, plus the steady stream of those who come to the Healing Research Center. He's treated thousands of CFS patients in his over forty years of practice. I don't know of anyone else who's had such experience.

Dr. Poesnecker told me that the CFS patients he's seeing now are much sicker, their condition much more complicated by allergies, heavy metal toxicity, chemical sensitivities, yeast overgrowth, misguided medical treatment, and other problems than those he was seeing in earlier years. It's harder to heal them and recovery takes longer, but, he assured me, there is no limit to the improvement that is possible.

Continuing the remedies to see whether I can improve further, I'm grateful for the progress I've made so far. But the key aspect of this experience is that it has forced me to change my way of life, leading to a more satisfying and contented life than I had before CFS. In my search for relief from constant pain and distress, I've had to give up almost everything that once made my life meaningful; but that previously fulfilling life has been replaced by an even better one. How I wish that everyone suffering with CFS and similar disorders could have the kind of healing experience I've had.

It's good to know that Dr. Poesnecker is recruiting trainees to come work with him, become certified, and return to their homes, able to provide some of his therapy locally. Having expanded the residential facilities to include a dormitory-type building in addition to the Sanctuary, which is a six-bedroom cottage, he is also recruiting health care professionals to come work with him and Dr. Cushing at the Clymer Center. Perhaps more suffering CFS patients will have access to care that will help them, eventually establishing the effectiveness of this alternative treatment for those who can take advantage of it.

In November 2001, it is now three years since I wrote about learning to live "inside my envelope". Since that time I have had significant progress toward recovery, due in no small part to the discipline of self-management described above.

Two years ago I discovered Dr. Poesnecker, who has been specializing in treating CFS for over forty years. After reading his book, Chronic Fatigue Unmasked 2000, I decided to try his treatment. In 2000 I spent nine weeks at his Healing Research Center, and in 2001 I spent seven weeks there. At home, I continue treatment by e-mail and parcel post. Since the treatment is described at Dr. Poesnecker's website, I will not discuss it here.

Instead I'll just describe the results I've experienced. I am feeling so much better than I was last year and much, much better than two years ago. I now have nearly 100% symptom-free Good Days. What a difference that makes! My one remaining problem is sleep. I'm still struggling to have consistently Good Nights, but they are much more comfortable than earlier years. Although I still must live inside my envelope, the envelope has expanded considerably. I do not need to rest during the day. I'm busy all day, usually at home. But I also go shopping occasionally and visit friends and family. I even danced for hours at our granddaughter's wedding. In fact, I can do whatever I want to do occasionally without having any symptoms.

Where once I believed that recovery was unlikely for me, I now consider myself substantially recovered and still making progress. For me, having CFS is like having diabetes: it's a chronic condition that can be managed and that requires lifestyle adaptations. My recovery has not meant that I can live the very busy, active way I once lived. Living inside my enlarged envelope, however, I have a productive, comfortable, and happy life.