My Experience with Antibiotics
I was fortunate, in 2000, to find an ILADS doctor in Switzerland who would treat long-term with antibiotics. She began conservatively, prescribing doxycycline, 200 mg a day. I responded strongly to this dosage, and remained at this relatively low dosage throughout treatment. Doxycycline is considered relatively safe as far as antibiotics go, because it is absorbed directly in the stomach, rather than in the intestine, where antibiotics damage the intestinal flora. My doctor was pleased that I responded so well to doxycycline (meaning, I had acute healing responses), and she kept me on it for the next ten months.
I was fortunate, in 2000, to find an ILADS doctor in Switzerland who would treat long-term with antibiotics. She began conservatively, prescribing doxycycline, 200 mg a day. I responded strongly to this dosage, and remained at this relatively low dosage throughout treatment. Doxycycline is considered relatively safe as far as antibiotics go, because it is absorbed directly in the stomach, rather than in the intestine, where antibiotics damage the intestinal flora. My doctor was pleased that I responded so well to doxycycline (meaning, I had acute healing responses), and she kept me on it for the next ten months.
This link to the use of doxycyline
is interesting, as it represents the standard, CDC approach of
short-term treatment, and the assumption they go on, that one can treat Lyme disease much like other infections, with one to two weeks of antibiotics. Compare this to what actually worked for me.
"A 2003 study suggested that a 10-day regimen of doxycycline was sufficient for curing most cases. The duration is a matter of some debate, since many physicians are concerned about persistent symptoms and so prescribe the antibiotic for 20 days. Whether prescribing antibiotics for longer periods of time adds any benefit, however, is uncertain. For example, according to the same 2003 study, extending the duration to 20 days did not prevent persistent Lyme symptoms any more effectively than the 10-day regimen."
"A 2003 study suggested that a 10-day regimen of doxycycline was sufficient for curing most cases. The duration is a matter of some debate, since many physicians are concerned about persistent symptoms and so prescribe the antibiotic for 20 days. Whether prescribing antibiotics for longer periods of time adds any benefit, however, is uncertain. For example, according to the same 2003 study, extending the duration to 20 days did not prevent persistent Lyme symptoms any more effectively than the 10-day regimen."
I soon began to "herx," and that can be very frightening and difficult to deal with. However, Lyme patients learn that they can't avoid it, and that they have to "herx their way back to health." If all goes well, each healing crisis is one step closer to recovery.
For an understanding of the herx, see Under Our Skin now available on hulu.com. A few of these patients allowed themselves to be filmed while herxing.
Briefly, a
herx is a temporary increase in disease symptoms as a result of the die-off
of pathogens such as bacteria or fungii. When being attacked by antibiotics, the Lyme spirochete bacteria
produce powerful toxins and neuro-toxins to poison the host and defend themselves. At the same time, their dead cellular
bodies float in massive numbers throughout the body, triggering autoimmune inflammatory reactions such as pain in the nerves and joints, and mind-fog, hallucination or seizure in the brain.
In treating Lyme disease, the herx reaction commonly occurs in four week intervals. This has been observed so consistently by patients and doctors that it is a taken as a "given" in the dynamic of treating Lyme disease.
There are many possible explanations for the cyclical nature of the herx, none of them completely satisfactory. It is known that when the bacteria are attacked, they evacuate the parts of the body where blood easily
circulates and go deep into the body's denser tissues. They hide within cells,
within connective tissue, and even within bone. They change
their shape to avoid detection.
They join together into colonies and surround themselves with a
protective gel (a bio-film) that antibiotics cannot penetrate. They
separate parts of their DNA into tiny cysts, from which they emerge later when antibiotic use has stopped and it is "safe to come out." Even if all active bacteria are killed, cysts survive and months or years later, break out to form a new population of bacteria.
It is easy to understand why Lyme disease is so difficult to heal, and why it often requires months to years to overcome it. The only hard thing to understand is why the CDC does not admit the necessary complexity and length of treatment in the face of the evidence.
The most convincing argument I have heard for the cycle of herx is that the bacteria may have to leave their hiding places to feed and reproduce about once a month, at which time they come into the line of fire of the antibiotics or other antimicrobial.
My Lyme doctor explained that over the course of treatment, the antibiotics penetrate more deeply into the body and into the bone. From month to month, they reach into new "layers" and kill off bacteria hiding there.
In my case, the herx first showed as pain in the peripheral
nerves and under the skin. I experienced pin-prick pains
all over the body (actually, some of them felt more like ice-pick pains,
very deep, and long lasting) and I also lost the coordination of my legs (the
nerves were affected) and my extremities were sometimes numb.
Then
the herx went deeper, into the joints, with knee and hip
pain. I would sit for hours in a recliner while videos of light comedy
ran on tv, and would pass in and out of consciousness as surges of toxins hit my
brain, and pain throbbed in my joints.
Then
the herx moved into the brain. Lyme patients say that when the
herx hits them in the brain, they go through extreme anxiety and depression, as well as loss of cognitive abilities. Sometimes, they hallucinate and are in a completely different world. One of the women in my support group landed in a mental hospital, and was fortunate because a doctor there recognized her illness as possible Lyme disease. In my case, I lay as if dead on the couch. My mind felt like a block
of concrete, unable to go anywhere... not into thought, prayer,
meditation, memory, or emotion. This continued for two or three days, each day worse.
When
having a herx of any kind, it is difficult to keep the faith that this
extreme experience is actually a necessary part of healing, rather than
simply the illness getting worse.
Bottom line: herxing is scary.
In the film, Under Our Skin, we see one woman going through seizures as she herxes.
At the end of the
film, after months and months of torturous treatment she is well. She
had to go through absolute horror to get well, herxing her way to health. What a bizarre disease
and healing process!
Finally, my herxes
grew shorter and less acute, and my doctor said I could now
"pulse" the antibiotic, being sure that I was taking it during the time when I expected to herx. Each herx was shorter and less intense. After ten months on doxycycline, I felt better. I wanted to stop treatment, and my doctor agreed.
I was very fortunate that I responded so well to oral doxycycline.
I was very fortunate that I responded so well to oral doxycycline.
Colloidal Silver
During
the next expected herx period, I did still feel some pain in my lower
legs, so I decided to try colloidal silver. Many Lyme patients say that it
helps them. Rather than buying expensive products from the store,
however, I ordered a top grade "generator" that I could use at home to
make quarts of quality colloidal silver. I took a small dosage
every day for the next few months, and finally felt I had beat the Lyme. This was late 2001.
Lyme
disease however cannot be cured. It goes into remission when the bacteria (and
co-infections) are beat down in numbers to the point where one's own
immune system can deal with them. But it can and will break out again if
the immune system is weakened.
It is helpful to have something at hand to give one's body some help, and all wise Lyme patients have one or another antimicrobial ready to use at the first sign of relapse.
It is helpful to have something at hand to give one's body some help, and all wise Lyme patients have one or another antimicrobial ready to use at the first sign of relapse.
For
the next three years, I would rely on colloidal silver, using it briefly whenever I felt Lyme symptoms such as pin prick pain or numbness. Each time, the overt symptoms disappeared. But Lyme was affecting me in less obvious ways.
In the spring of 2002 I developed bursitis--a
painful condition in the right shoulder (the same shoulder where I'd
had the tick bite in 2000). I saw a physical therapist, did
exercises and so on, but the condition did not improve.
It happened that I'd
promised to play the guitar and accompany some musicians on a recording, but I developed a very bad
cold a few days before. I reached for colloidal silver, which is often used to reduce the
duration of a cold. Because I needed a strong healing boost, I drank down an entire quart on the evening before we recorded the music. My right arm was very busy of course, strumming the guitar (as it had been during several rehearsals.) Perhaps the colloidal silver and good blood circulation to the shoulder combined to help. The day following the recording, all the pain in my shoulder was gone--and it hasn't returned.
I have to suspect that what I'd thought was bursitis was actually an inflammation caused by Lyme bacteria that
had settled into that area (the closest joint to the initial tick
bite).
Now,
people with Lyme disease become expert at understanding where they are
in their healing cycles. They learn to tell the difference between normal fatigue after a hard day of activity from debilitating fatigue due to the illness or a
healing crisis. They become expert in telling if therapy is working, by seeing if it makes them herx. .
Online,
you can read many reports from the FDA and Quackwatch, saying that
colloidal silver is bogus. But I believe the experiences of people with Lyme disease who report improvement using colloidal silver. They do not report complete cures, but, like me, they experience definite benefit from its use.
Lyme
patients develop an extraordinary sense about what is happening
in their body. This, in combination with the general lack of knowledge
and support from the medical community, has led to unprecedented
experimentation in healing and detox modalities by Lyme patients--and has helped many to get well. I am confident that our struggles will eventually benefit the world community, as this disease continues to spread around the globe.