One Person's Experience with a Promising New Lyme Treatment
By L. James Johnson
Hyperbaric oxygen (HBO) therapy is an experimental treatment for Lyme disease. It is also something that I have become very familiar withand for good reason. I am told that I hold the record for the most near-consecutive HBO treatments in North America. I completed my 150th "dive" on January 29th, 1999 at a hyperbaric facility in northern California. I was treated for chronic Lyme disease. But more about me later.
The Technical Side of HBO Therapy
HBO therapy is a medical treatment. Like any medical procedure, a physician's prescription is needed prior to beginning treatment. HBO therapy uses the administration of 100 percent oxygen at a controlled pressure (greater than sea level) for a specified period of time. Lyme patients usually receive two, one-hour treatments each day, five days per week. Each treatment is administered at a pressure equivalent to 45 feet below sea level or what is termed 2.36 ATA (Atmospheres absolute). William Fife, Ph.D., established this treatment protocol.
It is common for Lyme patients to undergo between 30 and 60 treatments in the first phase of HBO therapy. If a patient has been impacted by treatment, such as by experiencing a Jarisch-Herxheimer reaction (this can confirm bacteria die-off), then another 30 to 60 treatments usually follow. A physician can prescribe more sets of HBO therapy based on the patient's individual evaluation.
HBO therapy is often used to treat conditions such as difficult healing wounds and burns. HBO therapy increases the amount of oxygen in the body, which in turn causes several physiological changes that result in accelerated healing. The basis for these changes is the fact that HBO therapy increases the amount of oxygen in the blood by up to 2000 percent, depending on the treatment depth. This dramatically increases the amount of oxygen at the cellular level. Scientific research indicates that Lyme bacteria are microaerophilic, or debilitated in high oxygen environments.
My Story
I was infected with Lyme disease four years ago while camping with my children in Manitoba, Canada. I saw six physicians before a Lyme diagnosis was made. I went untreated for ten months. Since receiving my Lyme diagnosis I have worked with a number of caring and professional Lyme physicians and their staff. Working together, we have adjusted my antibiotic therapy as needed, and there have been periods when I felt that I was moving past Lyme symptoms and toward near-perfect health.
However, I regularly experienced relapses, which became more severe with each occurrence. This situation culminated last summer when I relapsed again, but this time with new Alzheimer-like symptoms. It appeared that I was not reacting to my daily oral antibiotics (Suprax and Zithromax), and weekly intramuscular injections (Bicillin IM) in a manner consistent with recovery. I was forced to face the fact that a more intense treatment was necessary in order to break this cycle of spiraling relapse.
Why HBO Therapy?
How did I end up spending a few hours each weekdayfor four-and-a-half monthsbreathing pure oxygen while sitting with others in a six-person hyperbaric chamber? Last summer I was living in Berkeley, California when I was forced to quit my job because the Alzheimer-like neurological symptoms I was experiencing became too severe to remain functional in the workplace. In my attempt to find a solution to this dilemma, I asked a friend to research hyperbaric oxygen therapy for me. My friend reported back that a private facility had recently opened just a few hours away in Chico.
At about the same time, a Hyperbaric Medicine specialist by the name of William Fife, Ph.D. released a preliminary outline of a yearlong study he conducted into the effects of HBO therapy on Lyme disease. (This outline can be viewed at https://hbotoday.com/treatment/clinical/researchstudies/effectsonlyme.shtml, or send me your address, along with one dollar to cover costs, and I'll mail you a copy of the outline.)
Like other Lyme patients, I scoured the Internet for scientific data that I hoped would clarify the use of HBO therapy in treating Lyme disease. Until Fife's study was released, there was not much hard evidence to consider. Thankfully, William Fife's study outline gave me at least some of the evidence that I had been looking for.
William Fife's Study
The study was completed at Texas A & M University in 1997. It was approved by the Texas A & M University Review Board. The results were compelling: 85 percent of the 66 patients in the study showed improvement following HBO therapy.
I was particularly impressed by the fact that Fife's subjects were Center for Disease Control (CDC) positive, which included a positive Western blot test. Even more important to me was the fact that, "All had failed intravenous antibiotics, and many were continuing to deteriorate even though still on various antibiotics."
The study outline confirmed that these were not new Lyme patients. These were adults and children who had tried and failed antibiotic therapy, including the big gun in the antibiotic arsenal: intravenous antibiotics. It appeared that this study had chosen the most difficult subjects to test, most of whom probably had nothing to lose.
The fact that about 13 percent of the patients in the study showed no benefit from HBO therapy did not surprise me. After all, any form of treatment for Lyme disease has a wide variety of results. What did surprise me was the fact that as many as 85 percent of the study group, which had previously failed IV antibiotics, showed improvement with HBO therapy. Fife's study defined improvement as a decrease or the elimination of symptoms.
Fife's results were significant to me because I had begun to believe that I was a lost cause. If Fife's study was representative of how the typical chronic Lyme patient would react to HBO therapy, then my chances appeared good for at least some relief from the hell my life had become. My decision was made. I was off to Chico!
"Diving" in Chico
I was nervous when I arrived at the treatment facility for my first "dive" in late August of last year. I had not been able to find any first-person accounts of HBO therapy on the Internet and I didn't know what to expect. As it turned out, my first treatment was simple, easy and stress free.
The first thing I did was change into surgical scrubs, which are 100 percent cotton and static-free. Karen Gossett, the Hyperbaric Technician who gave me the technical rundown prior to entering the hyperbaric chamber, told me, "don't take anything flammable or anything that can create a spark into the chamber." Karen told me that this included electrical devices (such as radios), watches, clothes made out of rayon or nylon, etc., or newspapers. I was surprised that newspapers were on the list. Karen explained that the low combustibility of newspapers made them inappropriate to be in close proximity to oxygen. I was happy to learn that almost every other form of reading material was acceptable.
Vital Signs
After I changed into scrubs, Karen took my vital signs: blood pressure, pulse rate, and a short list of other items that are checked daily. I learned that I would not be able to dive with high blood pressure because HBO treatments constrict blood vessels, which can increase blood pressure during treatment. Obviously, it is not a good idea to dive if your blood pressure is already high because the treatment itself can cause it to go even higher.
However, I also learned that the treatment's effect of constricting blood vessels can be beneficial. A friend of mine was experiencing a severe migraine headache when she began her HBO dive. Within five minutes of breathing pure oxygen under pressure the migraine headache was gone. I have since learned that studies show that such immediate relief is common when migraine headaches are treated with HBO therapy.
The Hyperbaric Chamber
Some HBO treatment facilities use monoplace chambers, which hold just one person. The facility that I underwent treatment in uses a multiplace chamber, which holds up to six patients and one technician. The technician looks after everyone during the dive.
When you become experienced at HBO therapy you quickly learn that the most important concern prior to going into the hyperbaric chamber is kidney management. Going to the bathroom in a timely fashion is first and foremost on everyone's mind prior to diving. Once the door to the chamber is closed, the next bathroom break is just over an hour away!
Once kidney management was taken care of myself, five other Lyme patients and a technician entered the hyperbaric chamber. For the next 12 minutes we sat and talked while the pressure inside the chamber was increased to almost two and a half atmospheres, or the equivalent of 45 feet below sea level.
This initial stage of a HBO treatment is similar to sitting in an aircraft while it descends. Like the airline passenger, the patient's ears adjust to a change in air pressure. The technician in the chamber made sure that everyone's ears were clearing properly. I discovered how easy this was during my first dive. The simple act of swallowing is often enough to do the trick.
Undergoing a hyperbaric oxygen treatment is mostly a boring experience. It is common to watch movies and read books or magazines. After an hour of breathing pure oxygen the chamber is returned to normal pressure and everyone takes a break. Half an hour later we do it all again before going home for the day.
What Is It Like?
One of the most common questions that I am asked about HBO therapy is how do you feel while breathing pure oxygen. Most people assume that you experience an altered state or some other sensation. You don't. The average person who sits in a hyperbaric chamber breathing pure oxygen under pressure will be bored silly because they don't experience much out of the ordinary.
However, what is confounding to some in the medical community is the fact that Lyme patients are affected by HBO therapy. Although their state did not change, most of the 34 Lyme patients whom I "dove" with experienced a flare-up of their Lyme symptoms during the dive itself. Also, many people experience increased Lyme symptoms for up to a month or two or more after their HBO therapy ends. Some Lyme and Hyperbaric Medicine specialists have deduced that this is a result of a Jarisch-Herxheimer reaction. If true, it confirms bacteria die-off and at least suggests that HBO therapy is appropriate for treating Lyme disease. The severity of this reaction was different for everyone and varied for individuals throughout their treatment.
In most cases, when a Lyme patient experiences something that resembles a Herxheimer reaction during treatment, it is considered to be a good sign. The objective of any Lyme treatment is to kill the Borrelia burgdorferi (Bb) organism. As most Lyme patients know, a Herxheimer reaction occurs when Lyme bacteria are killed off quicker than the body's organs (kidneys and liver) are able to process them. This bacteria die-off results in toxins being released in the body that create a flare up of symptoms. Lyme patients experience this as a "healing crisis." In other words, we get worse before we get better. Thus, getting worse during HBO therapy is considered to be part of the healing process.
Double Duty
Most of the Lyme patients that I dove with continued aggressive antibiotic therapy while undergoing HBO therapy. This is standard protocol. This is also good news if your objective is to kill as many Bb organisms as possible because you are doing double duty therapy. It is believed that HBO therapy and antibiotic therapy work in a synergistic manner. In this context, "synergistic" is defined as the combination of both treatments (HBO therapy and antibiotic therapy) being greater than the effect of either one alone.
Unfortunately, there is not enough space in this article to go into the technical aspects of how it is believed HBO therapy affects the Bb organism. However, if the above statement is truethat HBO therapy and antibiotic therapy work in a synergistic mannerit means that if you plan on combining these treatments, then you should be prepared to experience a strong Herxheimer reaction.
It is also important to note that HBO therapy's exact mechanism of action is not known. More research is needed.
Lyme Confusion
Some people, including certain Hyperbaric Medicine specialists, believe that the more HBO treatments you undergo, the higher the probability of a positive outcome when treating Lyme disease. This rationale formed part of the reason why I did a total of 150 treatments.
However, it is important to note that most of what is known about HBO therapy and its relationship to Lyme disease is speculative. This follows the fact that much of what we know about the diagnosis and treatment of Lyme disease is based on less than exact medical science. After all, the medical community is often perplexed by the highly individual and complex nature of Lyme disease. This results in controversy and opposing theories concerning the diagnosis and treatment of Lyme. A major reason for this is the fact that the diagnosis of Lyme disease remains clinically basedthat is, a diagnosis based primarily on symptoms alonebecause, unfortunately, there is no common test available that can accurately rule out or confirm the infection.
The fact that an accurate and common test does not exist for Lyme disease means that both physicians and patients are forced to rely on treatment guidelines that are more subjective than either would prefer. This is true for antibiotic therapy and it is also true for HBO therapy. The only way that this situation can change is if research can advance our understanding of all aspects of Lyme disease.
In Closing
It has been five months since I finished HBO therapy. I am happy to report that I have been working full time for more than two months. Although I still experience a few basic symptoms and have occasional bad days, each month is better than the last. This month I am living life at about 90 percent of my capacity. It not only feels wonderful to be well again, but I am thankful to have my life back.
How much of my current success in treating Lyme disease is attributable to HBO therapy? As always, any answer to this question will be speculative until more scientific research is completed. However, I believe that I would not be 90 percent without HBO therapy. Yet, the most important question for me is this: What effect will HBO therapy have on the cycle of spiraling relapses that have been part of the pattern of Lyme disease in my life? No matter how good I feel now, this crucial question may not be fully answered for another year or more.
In the meantime, I plan on using my newfound life to good advantage. Like others before me, I am writing about Lyme disease in the hopes of helping others who are afflicted with a disease that much of the medical community doesn't understand, yet. Also, I am thankful to the Lyme Alliance and its volunteer staff for their huge effort in helping to educate people in the United States and around the world about Lyme disease. Where there is hope, there is life. Thankfully, the Lyme Alliance is continuing to build hope for all of us. Stay tuned!
Publisher's close:
L. James Johnson is a 47-year-old marketing consultant. He now lives and works in Chico, CA. He can be contacted by email at or by regular mail at 491 Posada Way, #10, Chico, CA 95973. If you want a copy of William Fife's report, send a dollar (to cover costs) and your return address directly to the author.
Mr. Johnson plans on writing more articles on the diagnosis, treatment and controversies surrounding Lyme disease. If you want to be kept informed on future articles, please send the author your email or regular address.
Fife, William, Ph.D., Effects of Hyperbaric Oxygen Therapy on Lyme Disease, January 29, 1998.
This article is Copyright © 1999 by the Chico Hyperbaric Center (HBOToday.com). Permission is given to reproduce it, in its entirety, and including this notice.
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